Lukasz’s Story – Clarithromycin and Ciprofloxacin Poisoning, and Healing

 

*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments. 

My story revolves around two different sets of antibiotics taken approximately six months apart – November 2014 and April 2015.

The first antibiotic was Clarithromycin which I took for ten days to treat a stomach bacteria called Helicobacter Pylori (H. Pylori). This antibiotic was prescribed in the form of capsules and tablets.

The second antibiotic was Ciprofloxacin which I took for seven days to treat an ear infection. This antibiotic was prescribed in the form of liquid drops.

Before I share my story, it should be said that prior to these events, I was a completely healthy and active person who enjoyed backpacking, climbing mountains and hiking. I had no prior conditions and was in overall good health.

All that changed when my health, post-antibiotics, suddenly and rapidly began to deteriorate. Since then, I have been on a journey to not only reclaim my health, but also my life which vanished with a couple of bad decisions.

I am not going to sugar coat this. What transpired in the months following the above antibiotics was equivalent to being stuck in a nightmare of unparalleled proportions. It was surreal, to say the least.

Although I have been shaken to my core, I am still standing. My recovery has been slow and gradual but compared to the place I found myself in at the start of this whole ordeal, the difference is night and day.

If you’re reading this and dealing with your own nightmare scenario, know that you will emerge from this. No state is permanent. It may take months or even years but know that, in time, you will recover.

Keep the faith. Don’t give in. This is not the end of your story. Only a dark chapter which will eventually cease to exist.

That being said, here’s my account of events.

How It All Began

At the end of October 2014, upon having a blood test done at a local walk-in clinic, I received news that Helicobacter Pylori (H. Pylori) was present in my stomach and was told by the attending physician that antibiotics would be needed to eradicate the bacteria. Admittedly, back then I had little knowledge of the delicate intricacies of the human anatomy and in particular, the devastating effects of antibiotics on the stomach, gastrointestinal tract, liver and other vital organs. As such, I made the nearly fatal mistake of putting my trust in the doctor, believing that they have the knowledge and understanding to set me on the right path, in this case, to eradicate the bacteria without due harm. After all, if the antibiotics that were handed to me were not safe, the doctor would surely say something, give me a heads up of some sort. Unfortunately, that warning never came. When I decided to speak up and inquire about the safety of the pills myself, I was briskly and casually told that they were safe. Nor was there any mention of possible side-effects. I was simply sent on my way. As for the final hand-off, there was no warning at the pharmacy counter either. Little did I know that I was about to get myself into a life-threatening situation.

ER Visit On Day 2

Upon starting the antibiotics in November, I started to feel the powerful effects of the pills. I got through the first day but on the second day I could no longer tolerate the pills and felt absolutely brutal. The state of my health was bad enough that I had to be driven to the local hospital and attend ER in the late hours of the day. After spending countless hours in the ER, I was seen by a doctor who dished out three Tylenols for the road and sent me happily on my way. On the advice of the original doctor, I decided to continue with the antibiotic until Day 10. Upon the conclusion of the antibiotic course, I started to feel better with each day. I was certain that the worst was behind me. The worst, however, was yet to come.

The First Symptoms

It was now February 2015 and exactly three months after I ingested the first pills, the first wave of symptoms hit me. It began with an abrupt wakeup. I woke up at 5:30 am for absolutely no reason at all. The wakeup came in the form of a very sudden jolt and I could not fall asleep afterwards no matter what. I didn’t think much of it until the following night when I could not fall asleep all night. All I was able to do was close my eyes and rest but at no time would I be able to fall asleep. This sudden, inexplicable insomnia came out of nowhere. Prior to this, I had never had any sleeping issues whatsoever. Nor did I experience any abrupt wakeups. Now I was dealing with insomnia issues and the odd time that I did fall asleep for several hours, I would always wakeup abruptly at 5:30 am each and every time. This was beyond normal, yet it was only the start of my symptoms. In the coming weeks, I started to lose all my energy. I became so weak that I could barely get myself out of bed. It was as if my body was running out of fuel, even though I was providing the fuel in the form of food and water on a regular basis. I also started to lose weight very rapidly. Before the end of the month, I started to experience neurological impairments which I first noticed at work. Suddenly, I had trouble coping with my everyday tasks. Tasks that were natural to me before were all of a sudden becoming foreign to me. My concentration levels dipped, I could not focus and the world around me seemed to be closing in on me. People would be talking to me and I could barely make out what they were saying. I started to make a lot of errors at work. Things got so bad that I would exit the elevator on the wrong floor. I also started to lose track of time and could not tell how much time had passed by. It was becoming evident to me that something was very wrong, yet out of fear, I refused to acknowledge that the antibiotics had anything to do with these sudden changes in my daily function. I simply ignored the symptoms to the best of my ability and carried on. When I tried to shake off these symptoms at the gym, I was surprised to find that I could not lift anything remotely heavy. Prior to the antibiotics I could lift all sorts of heavy weights, this was virtually impossible at this point. I had no energy and my muscles felt extremely weak. Seeing as I was doing myself more harm than good, I decided to give the gym a rest for the time being.

Enter Ciprofloxacin

The old saying “When it rains, it pours” comes to mind when I reflect back on the six month period that started it all. Upon dealing with the sudden blow to my health, in a cruel twist of fate, I did something that nearly put the final nail in my coffin. In April, I went out and got poisoned a second time. Due to a so called medical professional, and I use the term loosely, I had sustained inner ear damage. This led to an infection and subsequently, a prescription for Ciprofloxacin from another doctor, one I thought would be the answer to my problems. Instead, with my continued lack of knowledge on the subject, I put multiple drops of Ciprofloxacin into my ear each day for seven days straight, in the hopes of healing my damaged ear. The antibiotic not only leaked into my ear but subsequently found its way into my body. At this point in time, I had enough toxicity in my body to create the perfect storm for neurological and physical dysfunction.

Here are just some of the symptoms that presented themselves in the days, weeks and months following the antibiotics:

-Abrupt wakeup

-Insomnia

-Depression

-Anxiety

-Lack of energy

-Weakness

-Muscle pain

-Joint pain

-Tendon pain

-Inflammation

-Eyelid twitch

-Burning sensation in the ear

-Sensitivity to light / sunlight

-Dry heaving

-Stomach / GI issues

-Urinary tract issues

-Muscle spasms

-Post-nasal drip

-Chest pain

-Heart palpitations

-Loss of appetite

-Major weight loss

-Psychosis

-Depersonalization

-Derealisation

-Paranoia

-Panic Attacks

-Suicidal Thoughts

-Fear of Dying

-Brain fog

-Confusion

-Numbness

-Apathy

-Irritability

-Depersonalization

-Derealisation

-Hearing loss

-Tinnitus (Ringing in the ears)

-Blurred vision (Double vision)

-Peripheral vision problems

-Back floaters in the field of vision

-Pressure near the frontal lobe

-Difficulty conducting activities

-Memory loss (Short / Long-term)

-Inability to form new memories

-Inability to concentrate / focus

-Inability to process information

-Inability to make a decision

-Inability to learn new tasks

-Inability to feel all emotions

The symptoms listed above occurred during different time periods. Some symptoms were short-lived while others persisted for longer periods of time. *At the height of the toxicity, most were present.*

Adverse Drug Reaction

It’s true that the human body can only take so much toxicity before it begins to shut down. In the weeks and months following the antibiotics, I entered a brand new world, a world filled with unimaginable horror and terror. I could no longer feel my frontal lobe working. It was as if it didn’t exist. For the first time in my life I was dealing with depression and anxiety. Not mild, not moderate, but major depression and anxiety. A blanket of sadness and despair overpowered any emotion I had left in me and drove me to the brink. I began to lose sense of what’s real and found myself battling depersonalization and derealisation. When I found myself outdoors, I felt as if the world was artificial, a 3D model of what I used to know. When around busy public spaces, my anxiety would skyrocket and I would seek to escape my environment as soon as possible. I began to close myself off from society and tried to conceal my degrading condition from my employer, co-workers, family and friends. Deep down inside I knew it wouldn’t be long before the truth would surface and surface it did. At the end of May, after months of agony, I suffered a mental breakdown at work. It was at this point that I knew I needed to leave my job behind and focus my efforts on making a recovery. I went on short-term medical leave and would later revise my leave to long-term status. From here on, all my energy and efforts were dedicated to healing.

Healing From Toxicity

The following is a list of items that I have undertaken towards my recovery from both sets of antibiotics. It is of upmost importance that each individual use his or her own discretion when undertaking any sort of treatment and/or supplement. I cannot be held responsible for any injury or mishap that occurs from this list. We are all incredibly unique and no DNA is the same. In other words what works for me may or may not work for you. Having said this, I hope this list will be of some benefit to you, your loved ones or anyone out there who has been injured by antibiotics.

# 1 – Obtain Support

When it comes to personal issues in my life, the last thing I wanted to do was to reach out to anybody during my ordeal. I thought to myself, “I can do this on my own”, “this is my fight, not anyone else’s”. The problem with this logic, as I found out, is that although it is your fight, winning this battle on your own is next to impossible. The reason being is that this is an invisible monster and going at it alone is setting yourself up for trouble. I had no choice but to reach out for support and I’m glad I did. I credit these people with saving my life and the same may hold true for you. Take my advice, reach out to someone, anyone. There are people out there who are willing to listen and help you through the storm. I enrolled myself in several groups such as an insomnia group and depression group. While it’s sad to hear about people’s problems, you will walk away with the sense that it’s not only you who is going through the storm. Countless others are going through the very same storm. This is very empowering.

# 2 – Positive Mindset

I know first-hand how difficult it is to stay positive during a nightmare that unfolds right in front of your eyes, however, I cannot stress the importance of at least attempting to keep as close to a positive mindset as possible. It’s essential to remove the persistent negative thoughts that flood our mind. The reason for this is because our thoughts turn to behaviours and our behaviours turn to actions. It’s a difficult and draining task but training the mind to stay on track is vital to recovery. As hard as it is at the present moment, finding things in your life to be grateful for, even if they are now in the distant past or minimized by your current state, will at least shine some light on the current situation. Afterall, what’s done is done. We cannot undo the past, however, we can write our future. In this future, you may feel like your old self or you may even be a happier you and the only way to get there is to stay in the game.

# 3 – Finding Forgiveness

It’s a major obstacle to overcome since it involves forgiving yourself, even if the effect was accidental, and forgiving those individuals who played a part in the process. Individuals who should have warned you about the possible side-effects but for whatever reason, did not. I believe that those of us who find ourselves in this situation are progressing through the five stages of grief with the end goal being not acceptance, but a feeling of having regained control of our lives. This is where we enter forgiveness. Holding on to the anger won’t solve the problem, it will only agitate it. Therefore, the only sensible act is to forgive yourself and those certain others. Times heals and it is only a matter of time before you feel better. Finding inner peace is part of the recovery process and it starts with us making peace with the situation we find ourselves in. Quite simply, it’s best to view this entire ordeal as another lesson in life.

# 4 – Fitness Club / Sauna

As I mentioned earlier, I had to give up the gym for a while since it was doing me more harm than good. In November 2015, I returned to the gym and this time, I felt different. This time around I could lift more weights and not be as exhausted as before. When I first returned, every single joint in my body started to crack like eggshells. I was concerned that this was going to be a long-term occurrence, however, the cracking of the joints dissipated after about a week or two and after that I no longer heard any cracking. So why should you hit the gym? The answer is simple. It will improve your mood and quite possibly, your overall state. Your brain needs to have its endorphins (hormones) stimulated and working out does the trick. This will reduce the pain and stress associated with the toxicity. You should only consider the gym when you’re ready though. This may take some time depending on when your toxicity took place. Also, what really helped me along was the use of a Swedish-style sauna that is located inside my fitness club. The use of a sauna helps eliminate toxins from your body. The toxins are removed through excessive sweating, as well as urine and stool excretion. You will need to drink a lot of fluids beforehand, during and after the sauna use. Water is best. Also, keep the sauna use to a minimum. 10-15 minutes is more than enough.

# 5 – Supplementation

Like most people on this website, I have gone out of my way to try and heal myself with supplements. It seemed like the easiest solution. The problem with supplementation is that you don’t know which ones work, if any. I bought my fair share of supplements, but in the end, I settled on only a few which may or may not be making me feel better. Again, it’s hard to say if these supplements work or if we are feeling better naturally with time. Perhaps both. The only supplements I continue to take are the ones I started off with which are:

Omega-3 (Heart/Brain/Mood) (NutraSea+D 1250mg liquid – 1 tsp daily)

Greens+ Original (Nourishing Superfood) (Genuine Health powder – 1.5 tsp daily)

Also, although this is not a supplement, I have been consuming Golden Flaxseed on a nightly basis to repair the stomach damage caused by the antibiotics. As I found out after the fact, antibiotics knock off both the good and bad gut flora / microflora. It does not discriminate. Seeing as the gut is considered a second brain with some in the field arguing that the state of your gut is more important than your brain itself, this means repairing your gut is critical to your overall health. In other words your gut health has great influence on how you feel. Consuming the flaxseed immediately before bedtime will kick start the repair process. It’s best to boil the flaxseed until it becomes a gel, let it cool slightly, and then drink it. It’s not the best tasting beverage in the world but it’s meant to help repair your stomach lining which may be damaged. The flaxseed is also high in fibre, iron and calcium so it has multiple benefits to it.

# 5 – Other Therapies

The only other therapy I sought out was Manual Lymphatic Drainage (MLD). MLD is conducted by a licensed therapist who specializes in this type of massage. This massage is meant to get the toxins moving away from their storage areas such as fatty tissue, organs and bloodstream. By moving toxins along, you are bound to remove/excrete them, a process similar to that of using a sauna. The price of these massages isn’t cheap ($70 CDN for 45 min session) however if you have coverage from your employer, it should help dampen the cost. It’s very relaxing and there is no pain involved whatsoever.

# 6 – Rebuilding Yourself

Let’s be honest with ourselves. This is a complete rebuild. Our house has been burned to the ground and we are being forced to start over. It’s a scary thought but it’s reality. How we emerge from this is up to us and our willingness to fight. There will be doubts, there will be setbacks, but in the end, one can only be victorious if he/she stands the test of time. Am I the same person I was before the poisoning? No. Do I hope to get there one day? Absolutely. I know it will take time and I also know I will need to exercise patience if I am to succeed. As difficult as it is, I urge you to do the same. Rediscover your old hobbies or find some new ones. I’ve started on some new projects. There is no better way to shelter from the storm than to keep yourself busy with hobbies/projects that you enjoy. I know the enjoyment is not the same as it used to be but in time, it will be. Believe me, you will be happier doing something than doing nothing at all.

One Year Update (February 2016)

It has now been one year from the start of the symptoms and I am feeling generally good. There are times when I still stumble along, however, when I think back to 2015 and the darkness that engulfed me, I can safely say that I have made huge strides in my recovery. Of all the symptoms that plagued me in 2015, the ones that remain are as follows:

Abrupt wakeup (No longer 5:30am! I usually wake up around 8:00am these days which has helped a lot)

Insomnia (There are nights that I sleep well and there are nights which I don’t but there is improvement)

Depression & anxiety (I have downgraded myself from major to moderate with mild being my next goal)

Lack of energy (I continue to have problems with energy but it has gone up substantially since last year)

Sensitivity to light / sunlight (On-going issue which I hope will resolve itself with time)

Dry heaving (On-going issue that has improved substantially; my guess is that it is connected to anxiety)

Muscle spasms (Major improvement in this department; I barely get spasms anymore)

Post-nasal drip (Still some excessive mucus forming in the lungs but it has gone down drastically of late)

Weight loss (Continues to be a problem as I have a difficult time putting on any weight)

Neurological issues (The brain fog is gone and I am able to make decisions quite well again; the biggest problem is my short and long term memory impairment – this really bothers me as my memories are extremely important to me; I am hoping that with the passing of time these memory issues will resolve)

Vision issues (Continues to be a big problem as my vision is still somewhat blurry; black floaters persist although they are mostly visible when looking at a screen or wall; peripheral vision has improved but is still obstructive; bright conditions are especially difficult to deal with but I’m hoping all this will vanish)

Concentration and focus issues (Improving steadily; I can concentrate and focus much better as of late)

Emotions (I’m still awaiting for my emotions to return; the numbness has gone down quite a few levels)

These days, I’m keeping busy with all sorts of projects and trying to put this whole nightmare behind me. A complete recovery is still a long way away but the thought of getting there has me excited and looking towards the future, with cautious optimism of course. I am incredibly thankful for the big improvements in my recovery but also know that I am not out of the woods yet.

Prior to this incident, traveling was my biggest passion in life. It was what I lived for. Unfortunately, this incident has robbed me of this passion and countless others. I will say this though. It is my goal to one day be able to set out into the world again. To one day, reclaim that ultimate feeling known as euphoria. It’s a work-in-progress but I am determined to get there at some point.

I hope the information contained here has been useful to you or your loved one. If there is anything I can do to help, please let me know.

I wish you all a speedy recovery.

Two Year Update (February 2017)

Hi, folks. Two years have now passed since the onset of a myriad of symptoms from Clarithromycin and subsequently, Ciprofloxacin. It’s been another tough year filled with successes and downfalls. Truthfully, I was hoping to be more or less recovered from this whole ordeal but it seems there is a lot of work left. Having said that, I do have to count my blessings as to where I stand currently. I’m sure things could be far worse than they are. As it stands, I have good days alternating with bad days. I’m hopeful that down the road more good days will follow but there are some things that have helped me along over the past year and I’m happy to share these with you in the hope that they may help you in some way or another.

Since my one year update, there’s been some minor changes in my life, both good and bad. For starters, in May of 2016, after missing a year of work due to my failing heath, I returned to my job and resumed full-time work. Originally, this seemed like the right move since I needed to keep myself busy and distracted from what was unfolding in front of me but as of late I’m beginning to question whether work is helping or hurting me. The problem is that I’ve been encountering some stress there lately and it has been taking a toll on me. My ability to handle stress has been greatly diminished since this whole ordeal began and along with the flu, it’s the easiest path towards experiencing my worst symptoms. This probably has something to do with a compromised immune system and/or damaged CNS. Avoiding stress and the flu isn’t an easy task. I was hit hard with the flu last winter (it was so bad that I had to be rushed to the ER) and this winter I’m undergoing a similar kind of battle but on a smaller scale (perhaps my immune system is slightly stronger this time around). As for the stress, my body and mind have endured so much of it over the past 2 years, that I’ve basically forgotten what it feels like to be free of it.

The aches and pain in my body are more or less under control at this point. Since I stopped going to the gym, there’s been little to no pain in my tendons, muscles and joints. Though I suggested exercise as a treatment in last year’s update, I’m not sure it’s a good idea for those that are newly floxed. In retrospect, I wish I had waited for some time as it’s clear to me now that a person who has been floxed has some significant damage to his/her tendons, muscles and joints and that these aspects of the body require lots of time and rest in order to heal. Perhaps undertaking lighter exercises is the best compromise. I have also been taking some oils so it’s quite possible that these oils have helped relieve the inflammation (I’ve been taking one full tablespoon of olive oil daily since the beginning of this year).

In regards to my symptoms, over the course of the past year, I have won more battles than I have lost. The psychosis, depersonalization and derealisation that these pills triggered in me back in 2015 are no more. Along with the frequent panic attacks, they were by far the worst and scariest symptoms I have experienced in my life. Not only did they inhibit my judgement and reason, but they also drove me to the brink of committing suicide. With the exception of the past couple weeks, I was able to downgrade myself from major depression to minor depression. Unfortunately, something has changed in the past couple of weeks and I’ve been attempting to right the ship ever since. It may be that I’m experiencing the Herxheimer Reaction. It’s hard to tell if that’s what’s happening or the usual relapses that seem to have no end. Presently, my most debilitating symptom is one that has been with me since pretty much the beginning – cluster headaches aka central pain syndrome. This condition can best be described as constant burning/melting of the brain. Currently it’s centred in the middle of my scalp but it does shift with time. The pain/pressure can sometimes be unbearable. Ironically, one of the very first symptoms that I complained about upon my November 2014 ER visit was an unbelievably painful pressure in the head. The ER doctor dismissed it as nothing and gave me three Tylenols for the road. There have been periods this past year whereby this issue seemed to be resolved only to come back later on. It’s almost always accompanied by concentration issues, short-term memory loss and blocked/burning ear canals.

Aside from this, insomnia and abrupt wakeups continue to be a problem for me. I haven’t had a good night’s sleep in 2 years and it doesn’t look like there is any end in sight. As a result of waking abruptly, I’m forced to sleep (I use the word loosely) in otherwise I’m extremely tired all day long. The ringing in the ears (tinnitus) only adds to the burden. This symptom ranges from mild to severe and seems to be worst when the cluster headaches occur. On the visual side of things, floaters continue to exist though I’ve somewhat become accustomed to them now. My throat issues have improved quite a bit but that too isn’t fully resolved. As for the nerves, I can sometimes feel myself shaking for no reason at all. My guess is that this has something to do with a damaged CNS and/or damaged nerve(s) within the body.

In addition to all this, I seem to be in worse shape when consuming wheat, dairy and recently, seafood. I’ve never had a problem consuming these types of foods in the past but since the ADRs I’ve developed some kind of allergy to them. Both wheat and milk seem to trigger either constipation or diarrhea. Fish, on the other hand, such as salmon, can set off multiple symptoms. Even beef can have this same effect. The only form of meat that seems to have no negative impact on my health is poultry (chicken, turkey). Needless to say this type of limited selection when it comes to food intake doesn’t make life any easier.

Speaking of digestion, I’ve found some interesting books that delve deeper into ADRs and our gut flora:

“Bitter Pills: Inside the Hazardous World of Legal Drugs” by Stephen Fried (HIGHLY RECOMMENDED)

“This Is Your Brain on Parasites: How Tiny Creatures Manipulate Our Behavior and Shape Society” by Kathleen McAuliffe (YET TO READ)

“I Contain Multitudes: The Microbes Within Us and a Grander View of Life” by Ed Yong (YET TO READ)

To end things off, the best advice I can give anyone who has been recently poisoned or at their wit’s end is to find something that makes you happy, even semi-happy, and stick with it. Anything from the arts to zip-lining and everything in-between, just do it and do it often. It’s these kinds of undertakings that have kept me alive and they might just do the same for you.

Remember, one day when you’re least expecting it, you’ll be feeling like your old familiar self and you’ll have these distractions to thank for getting you there.

List of things that have helped me along in 2016:

  1. Coconut Water [Contains Potassium, Calcium, Phosphorus, Magnesium, Manganese]

I believe drinking 500 mL of this water has helped with the inflammation in my body.

  1. Natural Spring Water [No Fluoride]

I’ve been using this water since the ADRs. I usually drink between 2L & 3L. I also drink tea.

  1. Fruits [Various]

I’ve been eating various seasonal fruits ranging from berries to melons and others.

  1. Vegetables [Various]

I’ve been eating various seasonal vegetables ranging from broccoli to spinach and others.

  1. Nuts [Various]

Mainly almonds, walnuts and hazelnuts. For enhanced/improved cognitive function.

  1. Carrots [Organic]

For the vision issues and antioxidant properties. High concentrations of Vitamin C in them.

  1. Avocados [Organic]

For cognitive function and inflammation management. Various other benefits as well.

  1. Vitamin C [Powder]

I tried Vitamin C in powder form for a while and it seemed to help a lot, albeit temporarily.

  1. Spirituality / Mythology / Philosophy

I’ve been reading books about the above topics and they’ve helped me cope better.

  1. Coconut Oil Pulling [Daily – Swish the oil around for your mouth for 10 mins then spit]

This helps remove harmful bacteria from the mouth. Thanks to Ger for the suggestion.

Last but not least, an unrelenting will to live. The ONLY way to beat depression is to OUTLAST IT.

The hard truth is that the road to recovery is a long and painful one…. but it’s there nevertheless.

I hope that you are all obtaining progress in your recovery.

I wish you days filled with peace, serenity, and tranquillity.

-Lukasz

 

5 Year Update – November 2019

 

Hello Friends,

 

I thought I’d write up a 5 year update. I have been hoping for months to be able to include positive news in this update, but reality is a different matter, and the truth of the matter is that I’m still in the fight of my life.

 

Unfortunately, my overall state has been on the decline and this has me very concerned. Issues that can become life-threatening are starting to appear. Things like brain inflammation, irregular heartbeat and chronic insomnia coupled with interrupted sleep are the major concerns for me at the moment. What’s worse, there is nowhere to turn to for help. The medical system in Canada cannot be trusted given their record of harm. Natural health practitioners are out of ideas as well. So I’ve been in the same pattern that I’ve been in for the past five years, which is a pattern of wait and see, try this and try that, hope for the best and prepare for the worst. When your chronic illness is complex and unrelenting, where do you turn to?

 

What is most troubling about the fallout from adverse drug reactions is that they bring about countless diseases and conditions in the human body. Diseases and conditions such as Celiac Disease, Bipolar Disorder, Depression/Anxiety, Arthritis, Peripheral Neuropathy, Chronic Fatigue Syndrome, Heart Disease, Alzheimer’s, Dementia, Parkinson’s and the list goes on. Sadly, the people who work in the field of medicine know this very well. They also know that their very livelihood depends on the population possessing these diseases and conditions, hence, we have this cycle of people falling into the trap, falling sick, and fighting for their life as a result of these incidents. It’s disturbing, to say the least.

 

I should add that I’ve been displaying symptoms of all of the above diseases and conditions and I know of many others who are as well.

 

Since we are on the subject of diseases and conditions, I have been especially concerned about my body exhibiting Parkinson’s Disease type symptoms. Tremors have been occurring more frequently and lasting for longer periods of time. Originally, this would occur after meals but lately the nerves have been shaking throughout the day. Coupled with cognitive decline and increased brain inflammation, I can’t help but wonder if that’s what I’m heading towards. Hope I’m wrong and it resolves.

 

Another matter that’s been on my mind of late is a condition called Craniocervical Instability (CCI) and Atlantoaxial instability (AAI). I’ve done quite a bit of research on this condition and while many items appear to line up, it’s another shot in the dark. Still, my mind keeps coming back to it as a real possibility, especially considering the fact that I suffered serious whiplash from a car accident just prior to the antibiotic catastrophe.

 

A lot of my organs are also acting up. My heart rhythm has changed quite a bit and feels somewhat off. It feels like its’ working overtime and under too much pressure/stress. In conjunction with my lack of sleep, I worry about a possible heart attack/stroke scenario. Again, hope I’m wrong and it resolves. In addition to the heart issues, I’m seeing other organ problems like that of my bladder which cannot handle much liquid. I have to urinate after only a few sips of water. Additionally, there is excessive mucus forming inside of my mouth which originally obstructs my throat. I have to clear out both often. Insomnia has also been kicked into high gear and when I do finally manage to get to sleep, it’s shallow and interrupted. This has been extremely difficult to cope with because it affects my overall state.

 

Then there is the brain inflammation. After the sets of antibiotics, I developed a burning sensation in my head. It felt like my brain was being fried. It was a very distressing feeling and I could barely cope. When this feeling would come over me, I could barely function as I could not utilize my brain’s normal function. This did at some point, resolve, but now it’s returned and it’s really making life hell for me. Taking all symptoms into consideration, this abnormality along with sleep deprivation (insomnia) are by far the most difficult to endure.

 

To wrap things up, I want to applaud each and every one of you who are battling to stay alive. In this daily struggle, I have endured many feelings of helplessness and imprisonment, but I’ve always kept all of you in mind. I wanted to see all of you return to good health, to get yourselves back to a decent quality of life, at the very least, because that’s what you all deserve. Many of you are my inspiration to keep going, to fight another day. I’m struggling… but I know I’m not alone.

 

Below I have posted an illustrative diagram of my current physical and mental health issues.

I believe this diagram best describes what it’s like to live in my body at the present moment.

 

Thanks for taking the time to read this update. I wish you all nothing but the very best.

 

-Lukasz

 

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

1,191 thoughts on “Lukasz’s Story – Clarithromycin and Ciprofloxacin Poisoning, and Healing

  1. ilker December 2, 2019 at 6:42 am Reply

    dear lukasz, have you been dealing with problems for 5 years why didn’t you consider stem cell therapy for your joints?

    • Azz December 2, 2019 at 6:23 pm Reply

      Isn’t it incredibly expensive?

    • Lukasz December 3, 2019 at 11:27 am Reply

      SCT is expensive. I’m broke and have been broke since this ordeal began. Up to now, I’ve been trying to counteract the illness with cheaper, less expensive methods.

      • Azz December 5, 2019 at 9:47 pm Reply

        Have you tried Manuka honey? I’ve been consuming it for the last week and have noticed a marked improvement in my symptoms, perhaps it’s related. The high antimicrobial capacity of honey is also closely linked to the improvement of the gut microbial balance, thanks to the high content of oligosaccharides, which act as a substrate for the growth of prebiotic microorganisms. One study has reported the potential of honey to Lactobacilli and Bifidobacteria: the vitality and the growth rate of these essential microorganisms in the balance of the gut microbiota increased with the addition of different types of honey. Anyway worth a shot.

        • Lukasz December 6, 2019 at 1:05 pm

          Yup. I have it at home. I’ve taken it in the past but it’s been a while since I had it. My concern with honey and any form of sugar is that it can feed the pathogenic bacteria. I’m trying to find out if SIBO and Candida is present in my body so that I have a better idea of what I’m up against. If they’re present, I need to eliminate all forms of sugar and starve the little bastards to death. I was suppose to do the breath test yesterday but there was a mix-up and it didn’t materialize. Now I have to wait at least a couple of weeks for a new appointment.

        • Azz December 6, 2019 at 8:52 pm

          I have heard Manuka honey fights against candida as well, in any case I know coconut oil does, perhaps you could try that instead. I’ve had a few fungal infections during the last 3 years and it’s been very successful in getting rid of them. If that is infact an issue in your case.

        • Lukasz December 6, 2019 at 9:11 pm

          I’ve had good results with coconut oil. I need to start it up again. I did have it recently and made some good strides. Or perhaps it was the pomegranate juice, I’m not sure since I was having both. Either way, one or both did wonders for my bladder infection. How much coconut oil did you consume per day for these fungal infections?

        • Azz December 7, 2019 at 3:09 am

          I haven’t actually consumed it but it’s been obvious that it’s helped multiple fungal infections on my skin so it goes to reason it would help in the gut as well. I will try it as of next week and see how it goes. To be honest my health has gotten worse as of last night. I’m so tired of this disease.

        • Lukasz December 11, 2019 at 11:32 am

          I hear you. Wish we could recover from this once and for all.

  2. Lukasz December 11, 2019 at 12:01 pm Reply

    What do you think might have caused your recent decline? I was also bedridden for quite a few number of days and I’m just now getting back on my feet. I was experimenting with very high-intakes of sugar for a week to see if Candida and/or SIBO would flare-up and ended up getting severely ill in the end. Now I know for certain that systemic Candida/SIBO/Leaky Gut are the main source(s) of my illness. I wonder if maybe this is your root cause as well?

    • Azz December 13, 2019 at 1:10 am Reply

      I wonder that too, let me know how your test goes as it will most likely be the cause of my troubles as well. I wish I knew what caused these setbacks but as of yet I have nothing but theories. By the way, have you been lactose intolerant since getting poisoned? I wonder how this could have happened as I certainly have the symptoms of it. I can’t believe another year has gone, it doesn’t seem like that long ago that I wished everyone a merry Christmas. Let’s hope this time next year I’m completely better sipping beer on a beach in Noosa. Merry Xmas and happy new year!

      • Lukasz December 13, 2019 at 2:14 pm Reply

        Unfortunately, the breath test for SIBO is not happening afterall. For some reason, they’re not accommodating my urgent request even though I was told it would be approved as they made a mistake and gave me the wrong info re: the requisition. Two different people, two different things told. Now they want to book me for April 2020 which makes it a 4 month wait. I’ve decided I’m not going to wait around. Instead, I’m going ahead with a treatment plan for systemic candida, SIBO and leaky gut. I’m going to start the treatment in the New Year as December is not a good month to dodge food. It’ll require a lot of discipline but I’m excited to start the process.

        Re: lactose intolerance, yes, I’ve got that too to my name. Antibiotics are known to trigger whey, casein and lactose intolerance. They mess with the conversion processes which in turn lead to these intolerances. Very similar to gluten and soy.

        Yup. Another year in the books soon. Time is flying by. Not sure if you agree, but undergoing chronic illness seems to make the time go by even faster. Or at least it seems that way. When I used to be healthy, the days seemed so much longer.

        Amen, brother. I hope your wish comes to fruition and that you get to enjoy the paradise that is Noosa. Merry Christmas and Happy New Year to you as well.

        • Azz December 18, 2019 at 8:31 pm

          Do you know if these food intolerances are permanent? I’m still shocked how they can give such toxic poison to the public, I like to think its possible to return to normalcy but perhaps I’m being too optimistic. Do you know if it can cause celiac disease? Like you I will try to change my diet once again as it did make me feel better before. Good luck for the new year.

        • L December 18, 2019 at 11:43 pm

          I can tell you that most things I couldn’t have after floxing (coffee, wine, some foods) I can have again now. I still don’t eat things like dairy (except goat’s milk cheese and kefir) No soy, non gmo, limited bread…only organic sourdough made from starter or 100% other kinds of non wheat grains…

        • Azz December 19, 2019 at 5:29 am

          Did you have lactose intolerance as well? I get it even from drinking a cup of milk, it’s very frustrating as you know! I would also LOVE to drink coffee again. Did you ever have insomnia and incessant dreams? I’m starting to get so tired of this situation after 2.5 years.

        • L December 19, 2019 at 11:23 am

          I had total insomnia…zero sleep…for a couple weeks. I also had horrific breathing issues, so I had to start using a sleeping pill, to even get one or two hours, before I jolted up gasping for air. I weaned off when I was able to get 6 hours, which was several months later. As for dairy, I didn’t really eat it much to begin with, except cheese, which I developed a problem with. Interestingly, goat milk cheese and kefir didn’t seem to be an issue. It was about a year before I had coffee and wine again, and had virtually no side effects.

          We are all so different. My side effects were not so typical. Nightmarish, but not typical. I am almost 5 years out and now have been dealing with a horrible nose/throat/lung congestion for over two years that I think has to be related to the cipro. a dozen doctors and no one can figure out what’s wrong with e. My fear is that it is autonomic nervous system damage, for which there is no really good cure.

          If you ever want to experiment with the coffee again, you might try just half a cup and fill the rest with almond milk.

        • Azz December 19, 2019 at 5:47 pm

          Honestly I think your nose, throat and lung issues are allergy related. I had exactly the same symptoms for years before I took cipro (and was the reason I took it in the first place). I also had a negative result in every test conducted, and I did every test. Totally the opposite to you though it largely disappeared after getting poisoned as I believe my immune system was utterly destroyed. But on a good note, having allergies massively reduces your risk of getting cancer. Do you have large mucus build up in your throat in the morning?

        • L December 19, 2019 at 6:05 pm

          no, we have ruled out allergies over and over again. I did a year of allergy drops, did blood tests, even did a $350 peptide injection that would have had immediate impact had it been allergies. WE have beat that to the ground. I have mucus at the back of my nose, my throat and my lungs CONSTANTLY. It is not allergies It is either nerve damage, or some other weird cipro related thing. I have seen over a dozen doctors, integrative and not, including allergists and ENTS….

        • natdavauer December 21, 2019 at 8:22 am

          I have constant phlegm. I have to spit it out. Many, many times a day. Funny, but it’s the second I stand up. Always when standing and moving.
          I think a few possiblities…

          The sinuses were recolonized by different bacterias, fungi and viruses. There was a year at least where I had zero boogers. Everything there was dead. Same goes for the gut. All the body’s mucus membranes were destroyed. They have recolonized, but they aren’t correct and cause a lot of reaction from the body

          I have A LOT of pressure issues I’m my head. I know I have issues when CFS flow in my head. Maybe due to leaks. Compromised connective tissue in the dura and other collegen based tissues. This has lead over the years to sagging of the brainstem and brain and weakness in the neck. There’s some people with these problems and I’m 100% the same. I feel like the mucus reaction might be a part of this.

        • L December 21, 2019 at 9:00 am

          The weird thing for me is this started 3 years after the floxing. In fact, I had felt (in spite of some permanent side effects) almost back to normal. I have asked several doctors now to do a culture of my sinuses, and they all said “oh, we can tell from your scan and from looking and seeing there is no color there that there is no infection.” I said I read that you can have clear phlegm and still be infected, and they all said “you don’t need a culture.” I finally got one to agree. and I was supposed to get the results back last Tuesday and they still don’t have them. I was reading that the bad gut microbiome can get into your respiratory tract. (IT seems the gut really IS related to everything!) Anyhow, I will be curious what the culture says. On the one hand, I am desperate for an answer…esp when it gets in my lungs and I can’t remove and can’t breathe. But on the other hand, if it turns out to be fungal, that’s scary because the anti-fungal meds are super toxic. So on the chance it’s that I have been taking a an anti-yeast supplements and ordered another one that is supposed to treat yeast, fungi, etc.

        • natdavauer December 21, 2019 at 9:28 am

          Interesting. Normal Drs are pretty useless for this I can agree. I’ve seen many ENTs and they all say nothing is wrong. Were you tested for marcons? I wasbuy a holistic doctor and the results came back positive. But of course that’s the opposite almost. All the normal ents believe marcons isn’t an issue and has no symptoms. So like many things here, the Establishment doctors believe there’s no problem when there might be one and the holistic doctors believe everything’s a problem that might not be. The patient is stuck in the middle of basically having to decide if they’re sick or not. FQT is being stuck in this position for years.

          I did take flucanazole early on and it had dramatic effects. I knew my fungal situation was bad after Cipro and antifungals dramatically changed my symptoms immediately. But as you said they did lead to much worse problems and I think I probably experience some kind of foxing from the toxicity of flucanazole. Had terrible heart problems after taking it for over a year. Just horrific. Now I won’t take them again but I still believe my bacterial, fungal and viral balance is completely off. And it leads to all sorts of chronic illness States in anywhere that you have mucosal membranes.

        • L December 21, 2019 at 9:58 am

          No I haven’t. I just did a little investigating and it said it doesn’t necessarily create the kind of problems I am experiencing…and of all the symptoms listed here, I have none. https://nutritionmba.com/what-is-marcons/#Symptoms I know one ND who I saw only once had given me a nasal spray with a anti-fungal in it. I wonder if those are less harmful systemically. I had to stop because it completely blocked my nose and I couldn’t breathe at all through it afterwards. But that was before two sinus procedures. Maybe I will ask to try that again if the culture shows a fungal infection.

        • L December 21, 2019 at 9:01 am

          what I meant to say is that I read that candida in your gut can get into your respiratory tract

        • Lukasz December 20, 2019 at 10:30 am

          MOST food intolerances are NOT permanent. At least that’s the impression I get from many hours of researching this topic. They will, however, persist until such time that the digestive system is more or less, fixed. These food intolerances are caused by a poorly functioning gut which is not processing food as it normally would. The blame falls on dysbiosis caused by antibiotic-use. Once the stomach and intestinal tract has been repaired to an acceptable level, these food intolerances begin to fade away. In addition to the gut needing to be repaired, the immune system also needs to become stronger to keep the intolerances in check. Once both of these issues are addressed, the intolerances resolve. Additionally, sticking to a clean diet free of inflammatory foods is also something that has to be adhered to in order for the digestive system to work at its optimal level. Poor diet voids the entire process.

        • Azz December 20, 2019 at 5:00 pm

          Has it gotten better for you yet? Looks like I need to take the plunge and go into monk mode from all gluten, dairy and sugar ect. We have very few pleasures left, but I did notice the greatest improvement during that time. The last 6 months I’ve basically gone nowhere in my recovery. New Years resolution!

        • Lukasz December 20, 2019 at 10:37 am

          “All disease begins in the gut.” -Hippocrates

        • Lukasz December 20, 2019 at 6:41 pm

          My food intolerances have improved but I don’t think they’re completely resolved. My digestive system is still down, hence on-going malabsorption for the past five years. I think the food intolerances will only resolve when my stomach is able to process food again. Until such time I’ll probably always have this problem because certain proteins aren’t being processed and utilized by the body. My body, and likely yours as well, is rejecting certain proteins that are found in wheat, dairy, soy and some other foods. It leads to these food intolerances that we’re discussing here. The only way back from this big mess is to fix the dysbiosis, eliminate possible SIBO/Candida overgrowth and repopulate the gut with beneficial bacteria in order to try to replicate what is now lost. All of this, of course, is easier said than done. We have a big mountain to climb here.

          Like you, I intend to eliminate all the things you mentioned. In fact, I’m going to try to stay on a zero-sugar diet for 2 consecutive months in order to try to heal from these digestive issues. As I mentioned before, it’s going to be difficult to see this through, but the time is now and I don’t have any more years to waste. As you said, there’s very few pleasures left for us, which is very unfortunate, but I think going on a clean diet for the foreseeable future can only benefit our health not only in the short-term, but the long-term as well.

          No better time to start on this kind of a mission than the start of a New Year. Good luck to us both. : )

        • Azz December 20, 2019 at 7:49 pm

          Thanks for imparting your knowledge of this to me, out of interest were you successful in getting a disability pension? It’s recently come to my attention that childcare subsidies and the tax benefit scheme is barred to those who refuse to vaccinate their children. Can you believe it, it’s literally black mail, especially for those in vulnerable financial situations like myself.

        • L December 20, 2019 at 8:07 pm

          That makes me so mad! Everyone is bought by big pharma. To be punished for not wanting to inject toxins into your child. 😦

        • Lukasz December 20, 2019 at 9:46 pm

          The decision hasn’t come forth yet. Last time I mentioned it takes 90 days for a decision to be made but I forgot to mention that it’s 90 business days and they don’t include weekends and holidays in that number. With that in mind, their decision should make its way to me no later than mid-January. I’m still extremely disappointed that you weren’t approved. Did you end up appealing the process like I had suggested? I was told that many applicants here get rejected the first time but are successful after appealing the decision. Perhaps the same holds true in Australia?

          Re: the childcare subsidies and tax benefit, that truly is despicable. You know, I lived in Australia for some time and this really saddens me. It’s a beautiful, wonderful country but this is not right on behalf of the Australian government. It makes me wonder if the Canadian government is posed to do the same, if it hasn’t already? I keep myself disconnected from the news and media altogether so I don’t know for sure but being a Commonwealth nation like Australia, we tend to have many of the same political outlooks and regulations.

          I get the feeling that parents all over the world are being targeted with these vaccine roll-outs. The epidemic of child autism and the overwhelming evidence that points to the vaccines as the source is something that parents all over the world struggle with. I’m not a parent but I would hate to be in that kind of a situation where I’m being held hostage (financially) if I choose to not vaccinate my child. It’s downright wrong. This control over people’s lives from the governments down to pharmaceutical companies needs to stop. They need to get their heads out of their ass and leave us the hell alone.

          Just my two cents.

  3. Laram December 13, 2019 at 10:04 am Reply

    Hallo Lukasz, hallo L, hallo Azz
    What mental symptoms still persist?
    DP?
    Brainfog?
    Concentration Problems?
    Panic Attacks?
    Dizzyness?
    Anxienty?

    • Lukasz December 13, 2019 at 2:26 pm Reply

      Hi Laram. For me, DP is completely gone. The other symptoms are intermittent. How long are you into your ordeal?

    • Azz December 13, 2019 at 6:14 pm Reply

      Hi Laram, many symptoms persist, nightmares and insomnia are generally every night, dizziness as well but less so during the day, depression although better then before is by en large ever present, anxiety and brain fog are intermittent. How about you?

  4. Laram December 13, 2019 at 3:17 pm Reply

    I am 2 years out.

    • Lukasz December 13, 2019 at 5:35 pm Reply

      What are your remaining symptoms? I find severity of side effects depends on how much poison one ingested.

      • Laram December 14, 2019 at 4:05 pm Reply

        I still have problems with brain fog, dizziness, restlessness, tinnitus, memory problems, problems with concentration and massive eye damage (blurred vision, damage to the cornea, floaters, lightning, fog …)
        and sometimes bad sleep.
        in the first year there were impulsive thoughts (no control), depersonalization, derealization, hypoglycemia, psychosis, hallucinations, muscle twitches. the impulsive thoughts were the worst because I always heard a voice that said kill kill kill …
        I was very healthy before cipro. I took 2.5 grams of cipro

        • Lukasz December 15, 2019 at 1:19 pm

          Damn. I’m really sorry. I can relate to 90% of these symptoms. The only symptoms I didn’t experience were hallucinations and voices. Know that I was able to overcome many of the other ones, which leads me to believe that in time, you will do so as well. It’s a long, slow process to be sure, but taking it one day at a time is all we can do. Like you, I was also fully healthy prior to taking the antibiotics. My body and mind has fallen apart in so many ways, but for the time being, I’m continuing the fight. It’s all I can do. I wish you continued recovery and better days ahead.

        • Laram December 15, 2019 at 4:46 pm

          thank you lukasz, I wish you that too

  5. ilker December 21, 2019 at 3:46 am Reply

    lukasz, did you think of fecal transfer?

    • Lukasz December 21, 2019 at 8:28 am Reply

      It’s been brought to my attention in the past. Natdavauer, who posts here from time to time, has mentioned it several times. It’s helped him tremendously so it seems to be an option to consider for some. As for myself, I’ve thought about it, but the costs to have the procedure performed are quite high and the procedure itself is a bit intrusive so I’ve been holding off. It’s still on my list of options but for now I’m concentrating my efforts on more non-intrusive, lower cost treatments / methods.

    • natdavauer December 21, 2019 at 8:52 am Reply

      I did a lot of FMTs. Made a big difference in my weight gain, muscle, stamina and mood. Didn’t cure anything but I think it’s very helpful. The microbiome was ruined. Speaking of sinus stuff too.. I’d be open to a sinus mucus transfer

  6. Kris December 21, 2019 at 12:37 pm Reply

    Hi Lukasz,

    i’m always doing research and ended up here by chance. I have been increasingly ill until 2011 when I finally got diagnosed with late stage Lyme disease. I went through a couple of wrong antibiotic therapies (first cycle wrong duration, second cycle wrong dose) and seen countless doctors and experts. I went through Doxycycline, Amoxicilline, Azithromicin, Hydroxychloroquine, Ceftriaxone, antimicotics in all dosages, durations, and adminstration methods, until after more than a year I tested negative for Lyme. I went from ill to wasted in my body and my brain, and in 2014 I was still sweating my whole shirt just by walking 10 minutes to work. My first improvements came from B12 (all forms) injections, initially subq, later intramuscular and finally IV but effects were lasting few days. Some major improvements started when I begun at home IVs with Myers’ cocktail ingredients + Glutathione. Beside that I also did ALCAR IVs (it really fix your brain fog!), and later added one more IV protocol with the following: Calcium N5-methyltetrahydrofolate, Glutathione, Vitamin C, Vitamin B12, Fructose 1,6-bisphosphate, S-Adenosyl-Methionine. It definitely pulled me out of that horrible condition, and although I still feel I am not back 100% I need to consider that ~10 years are passed and feeling 90% should be expected.

    • L December 21, 2019 at 1:37 pm Reply

      IVs are what saved me…Mostly high dose C, Myers, phosphatidylcholine and glut. Sadly, some people on here are unable to get the glutathione IVs and have had bad reactions or a return of some of their side effects. Glad you found the right treatments! (and WOW that’s a LOT of antibiotics! Hope you are on a good probiotic.)

    • Lukasz December 21, 2019 at 3:50 pm Reply

      Kris, thanks a lot for sharing your story of surviving Lyme disease. It seems you’ve been put through the wringer as far as your health is concerned, something many of us here can really relate to. You seem to be on the right path now. Glad these IVs have helped you get to where you are today. As L stated above, many people on this site have been helped by them, which is great considering we need all the help we can get. I think 90% recovery is what many of us here aspire to reach. 100% is complete reversal of chronic illness with no symptoms. Not impossible for some, however, realistically speaking, I think there’s always going to be a symptom popping up here or there for most of us. Even years down the road. Regaining most of our health is more than enough for many of us. Especially, those who were staring death in the face for a long time, wondering if they’re going to make it out alive. Anyway, congrats again on the progress made. Positive outcomes such as yours are what fuel myself and others to keep pushing forward. Hopefully 2020 will bring even better health your way.

  7. Lukasz December 23, 2019 at 3:23 pm Reply

    Merry Christmas, Happy Holidays and a Blessed New Year to L., Azz (Aaron), natdavauer and everyone else who’s been popping by here. I hope all of you guys get to enjoy the festive season with your family, friends or anyone else who’s part of your life. Thanks for being so helpful and supportive this part year.

    • L December 23, 2019 at 8:04 pm Reply

      Merry Christmas to you as well…and I hope 2020 is kind to you…..

      • Lukasz December 23, 2019 at 8:11 pm Reply

        Thanks. I hope the same for you and I especially hope that your sinus issues finally resolve.

        • natdavauer December 23, 2019 at 9:28 pm

          Merry Christmas everyone. I will do so I can to be grateful to be alive over the holidays. I find it hard at holidays because everyone’s pretty happy and asking how you are.. I always want to give them a 4 hour response on just how horrible life can be and what’s happened to me.. but that would ruin it for everyone so I just say “I’m ok.” But living with the lie isn’t fun either. But still.. I AM happy to be alive and better than I was 3 years ago. I’m glad that at least some people know the truth of just how real the suffering has been. That means a lot on the days when you have to lie about your health. I’m thankful for all who help each other get through it here.

        • L December 23, 2019 at 10:18 pm

          I laughed reading this. I know JUST what you mean! I don’t want to be Debbie downer, so I just say “Oh, I’m much better” and leave it at that, rather than saying “well, a few times each day and every night, I feel like I am either going to suffocate or choke to death, and all my toes are still numb, and I still have vision issues, and the phantoms smells are god-awful, and the tinnitus is making me INSANE” etc etc.

          but no…..”I’m doing ok.” My Christmas wish for all of us is a healthier, happier 2020…

        • Azz December 23, 2019 at 11:09 pm

          I can totally relate, but by now it’s become obvious that they only think I’m a hypochondriac and to see the smirk on their faces is incredibly frustrating especially for those people I would like to think care. Better to fake it till I make it. I’m grateful to have found others as severely affected as myself, it’s nice to have some understanding, friendship and relatedness while suffering from this disaster. time has flown by and still we’re in this diseased state but like you said at least we’re alive and at least we’re better then we once were. I hope everyone has a “bearable” day tmr. Merry Xmas!

    • Jason smith December 24, 2019 at 7:24 pm Reply

      Merry Christmas all hope the next year bring more positive and better days ahead.

      I know I’m fairly new on here compared to some others and have appreciated the help you guys have given me this past year.

      Things have been tough but finally had a window yesterday and it felt great
      Not for long but still feels like progress

      Sending blessings your way
      Merry xmas and a happy new year
      (As much as possibly able)

      • L December 24, 2019 at 7:46 pm Reply

        That’s good Jason. Hopefully those breaks will be longer and more frequent…until they are no longer “breaks.” Merry Christmas to you as well.

        • Jason December 31, 2019 at 5:44 pm

          Cheers I’m.sure I they ( I hope )

          Happy new year all hope its bring a better one 2020 hese we go

        • Azz January 2, 2020 at 3:35 am

          Happy new year! How are you these days? Has your eyesight improved? To date you’re the only one apart from myself that had that symptom but I’m glad to say it did improve. Not anywhere near normal yet though.

        • Jason January 2, 2020 at 5:00 pm

          Hi azz sorry u couldn’t reply to your message so I’m replying here.

          I’m still very sensitive to light and dry eyes the big floaters have gone down alot but still covered in hundreds of little ones which seem to cause blurry vision alot

          My eyes still hurt but not as bad as they where.

          My biggest issue is the alice in wonderland syndrome. Feeling like tripping all the time and things dont seem to be in focus
          Or seem further than they are or closer than they are.

          I am noticing a twitch in my right eye now which I didnt have before. Which has only been happening about 2 months.

          I feel its improving but as you know so so so so slowly.

          Hows your symptoms going into the new year ?

        • Azz January 4, 2020 at 3:52 am

          It was going ok for a while and I actually had a good day on Xmas, but it whent downhill soon after, I suspect either from drinking alcohol or the mayonnaise (from Germany) I inadvertently ate on the potato salad. HOPEFULLY it will dissipate soon. Have you suffered from depression? I like to think this is all reversible albeit incredibly slow, in any case what else can we do but keep fighting.

        • Jason January 4, 2020 at 5:09 am

          Sorry to hear that
          And yes depression is a factor for sure but I cant tell the difference between feeling angry or upset tbh
          The anxiety is the big one with derealisation and depersonalization

          I have given up on not eating whatbu want so I’ve been eating everything and put on 21 pounds.

          I’m quitting my job to work on getting better for sure

          My sleep has improved but still have many issues to overcome.

          Still having awful headaches with tight neck muscles effecting my eyes and head
          With terrible tinnitus and hyperacuses.

          I even had a cigar over new years night but suffering a little now due to that
          Will weed help I’m.not sure I’m scared to try even tho never had an issue before the antibiotics.

          Still feel like tripping tho it’s so annoying
          How us your vision??

        • natdavauer January 4, 2020 at 8:18 am

          Just want to warn against weed or edibles. For me edibles sent me into boarder line psychosis for a few months. Not sure I’ve ever fully recovered. I was given too much by somebody so maybe it was an amount problem. I’m not saying smoking a little bit wouldn’t help but I just want to warn of a worst-case scenario. For me I would give anything for that not to have happened. Easily the worst time in my life within this whole experience which is already the worst in my life.

        • L January 4, 2020 at 11:47 am

          5 years out the floaters are now minimal. Ocassional weird flashes of light, and I have to call the doctor, and he says “it’s ok. let me know if it happens again.” The macular degeneration will not go away. I just have to hope it remains at the level it is.

        • Jason January 7, 2020 at 4:32 pm

          That’s the thing nat

          I smoked it for years every day
          But now I’m worried to try it due to the panic but would like it to help the pain and overthinking.

          I miss it tbh

          I’m going to wait some.more time before I try it again I think
          Hows things this year

        • Jason January 10, 2020 at 3:40 pm

          Has anyone heard of DMSO
          And what’s it like if you have tried it
          It sounds like it’s the wonder fixer for us but nothing is that simple
          Cheers

        • L January 10, 2020 at 4:01 pm

          Wow! You’re not kidding. I too would like to hear if anyone has tried DMSO. The list of possible uses here, sounds like a FLQ toxicity menu! https://www.alternative-medicine-digest.com/dmso.html

        • natdavauer January 12, 2020 at 8:16 am

          Interesting. I’ve never heard of it. I do find it questionable that it says for chronic conditions it can take 6 mo to a year to work. Applied multiple times a day. I mean… So many things change in that amount of time you’d never have any idea if it’s helping. :/

        • L January 12, 2020 at 11:23 am

          Yeah, that’s always an issue….when that much time is involved. Although that is true with a number of remedies, if the condition is chronic. Like Traditional Chinese Medicine. For acute issues, you may only need one or two weeks. But for something that has been going on a long time, you might be on the herbs for months. True with other supplements too. It makes sense that if your body has been dealing with something for months or even years, it is not going to heal quickly. It’s just frustrating, because you don’t know if it was that, or another supplement, or a change in diet, or just time.

        • Azz January 19, 2020 at 9:28 pm

          Has anyone tried supplementing with ashwaghanda? Theoretically it should help since it’s been shown to enhance GABA receptors and serotonin in the brain

        • L January 19, 2020 at 10:43 pm

          Funny I should just read this now. Was just sorting through my HUGE bag of supplements and came across the ashwaganda. I did use it for a while. One of my integrative doctors recommended it when I tested high for cortisol. I was on it for months. I was taking other things so not sure what in particular helped, but my levels did go down. Not a bad one to try,

        • Azz January 23, 2020 at 2:26 am

          I will, might have to sell a kidney to afford it though, you mentioned a while ago that you were going to try fasting? did you find it beneficial?

        • L January 23, 2020 at 11:17 am

          well I tried the fasting because I had run out of ideas on how to treat this unending congestion issue. It did not fix it but I have read so much good about fasting, I would recommend it. It is not a fix for everything, but can have some “resetting” benefits. I helps reset the immune system (I suspect my issue is not immune-related) and it can help detox. Again I would do no more than three days (or even start with one or two days) and breaking the fast s perhaps the most important part.

        • natdavauer January 23, 2020 at 11:43 am

          I’ve done it up to 2 days a few times. It’s not a cure but it does always feel like it helps. It’s possilbe that you’d have to do it regularly (weekly?) for a while (3mo?) for it to make progress.

          In other news I ended up with strep throat and had to take abx for the first time. Took amoxacillin and I felt really good the first day after. I’d say feeling 85%. It was a huge leap in all symptoms. But.. another factor I think was my immune system. This was the first real “sickness” I’ve had in 3.5 years. My body was killing me in all places. Couldn’t move my back at all. All joints hurt. Even had a fever. That was the first time I’ve had a fever in 3.5 years. I think though that actually was my immune system turning on as it normally would. Something it hasn’t done. It’s possible that the immune response went to work fixing all the shit that doesn’t work not just the strep. So a day after the immune response which was the first day after I started the abx, I felt really good. It’s widely known that in chronic illness the immune system is either on 24/7 or not on at all. It’s just not working so all these things that would normally stay in check.. sinus stuff, gut stuff, aches & pains would be constantly healing. Without an immune response they just build up and up and up. I really want to try abx and get sick again 🙂

        • L January 23, 2020 at 11:57 am

          well, don’t you like to live dangerously 🙂 and yes, longer fasts would certainly have more impact. In fact the whole reason I thought to do the fast was that a pulmonologist suggested it. (and this was a straight non-integrative allopath!) He referred me to a place in Northern CA where they do longer supervised fasts, for like a week, to two weeks, depending on your size and if your body could do it. They include days leading into the fast and then several days coming out of the fast. Sounded like a great place but I couldn’t afford it. (It was one of only three that were recommended.) But again I think my issue is not immune-related. I think perhaps it is nerve damaged related, or just a really bad case of vasomotor rhinitis, which is still a big question mark as far as treatments that work. (not very promising at this point.)

          But glad you made it through the strep fairly easily. And yeah, amoxicillin would be my choice if I had to take an antibiotic again….

        • Azz January 24, 2020 at 8:39 pm

          Interesting theory, I hope it lasts. It’s good to know we’re able to handle amoxicillin!

  8. natdavauer January 23, 2020 at 11:44 am Reply

    Wasn’t clear I was talking about fasting not ashwaganda

    • Azz February 8, 2020 at 5:52 pm Reply

      Hi natdavauer, how has your recovery been progressing lately? I was wondering if there were any side effects when you took benzodiazepines? I’m quickly giving up on the idea that the Gabba receptors will heal themselves, as it’s been 3 years now and I’m tired of the struggle. So tired.

      • natdavauer February 10, 2020 at 8:15 am Reply

        Posted but can’t see the comment..

      • natdavauer February 10, 2020 at 8:17 am Reply

        Answer posted below

  9. Erik February 3, 2020 at 2:27 pm Reply

    Hi Lukasz,
    Wish you all the best in your path to recovery. My question is, do you think that if you had not taken Cipro your recovery would have been faster or complete? Are most of your symptoms from clar or from cipro, or that is not possible to figure out now.
    erik

  10. natdavauer February 10, 2020 at 8:16 am Reply

    It says this is a duplicate comment but I don’t see it showing up…
    I’m pretty stable lately. Last 6 mo maybe. Some ups and downs and then a return to baseline. I’d say swings between 60% and 75% recovered. Still a long way to go, but my problems are more focused and days more predictable. I know the hydrodynamics of my head are a huge issues. The CSF flow and brainstem compression. Back of the head is where many GABA receptors are too and I don’t know if I’ll ever know the specifics of all the dysfunction that’s in my head. The nerves? the pressure? The receptors? I haven’t had benzos for 2 years now and although I do belive they help this whole syndrome, they only lead to a worse state in the future. The only choice of taking them would be to assume you will be on them for life and you will have to keep increasing and increasing the dose as your body gets used to it. Then there’s the chance that you will end up being desensitized entirely and left in the worst place possible. Basically, unless you’re feeling suicidal, I’d stay away from them and just soldier on. If I look at the recovery timeline in the flox report, it feels so accurate for me. So I’m looking at a 6-7 year timeline. I’m exactly at about 60% which is where I should be 3.5 years in according to the graph. So If I can expect another 3 years of recovery I’ll be happy. Total nightmare on one hand, but thank god it’s at least some kind of recovery rather than staying like it was early on. Truly horrific. If after 8 years I’m stuck and don’t want to live like that, I’d honestly consider just taking benzos for the rest of my life. Or anything else that makes life bearable. But until then, I’m going to stay hopeful and I have every intention still of making a full recovery.

    • Azz February 11, 2020 at 5:26 am Reply

      Thanks for your detailed response, yes I think it’s wise to follow the path your on, I will endeavour to do the same. I didn’t realise the recovery time line was so long and after almost 3 years I was starting to get anxious this may be permanent. Before this happened I was the happiest I’ve ever been, I hope one day I can reach that level again. 8 years is a hell of a long time but I will be happy if it’s not permanent.

    • erik February 12, 2020 at 2:15 pm Reply

      Hi natdavauer . I am just jumping in here with my experience. It took me about 8 years 2008/2013 to pretty much recover 95%. And I enjoyed happy life until last December 12/19 when I took two doses of claritromicin 500mg /amoxicilin 1000 for h pylori infection. How would I KNOW that majority of symptoms would came back. How would I know that my body cannot handle any other ABX. I am beyond miserable. I never saw this post here before; I simple could not believe. YES, symptoms are of less intensity but what future brings? Will this turn into something worse once process of toxicity is set in place again. Already joints are cracking and hurting, muscles hurting all over, pins and needless, anxiety, same old shit.
      HEY I WON THIS BATTLE ONCE !!!
      Sorry, I just had to share my misery here, not that I have been asked.
      I do not know what else to say. Hang in there few more years and you will BE FINE.
      For me, do I need to wait another 8 years? Or, as they say second time around poisoning is way worse then first time. Even though it is not flox but no guarantee. Uhhh, dark thoughts are coming my way. Take care. erik

      • Azz February 12, 2020 at 4:40 pm Reply

        I was poisoned for a second time 2 years ago and would love to know the answer to that as well, the first time it took me only 10 months to feel 90% recovered, this time I’m about 20% 2 years out. Have you read something saying it’s harder to recover a second time? I don’t know why that would be the case.

        • erik February 13, 2020 at 10:31 am

          Were you poisoned with LF abx again or some other type of antibiotic?

        • erik February 17, 2020 at 10:35 am

          Hi Azz: When you were poisoned second time around, were you poisoned again with LF abx or some other type of antibiotic?

        • Azz February 18, 2020 at 7:52 am

          No I wasn’t, honestly I’ve spent 2 years thinking about what caused it. Fungicide, b12…I don’t know, obviously the antibiotic you and Lukasz took are dangerous, it’s crazy how much toxic medicine they so willingly give out. My sister recently got the sickest I’ve ever seen her from a flu vaccine, and they wanted to give it to my newborn as well! Have to be careful and never trust the quacks.

        • erik February 18, 2020 at 8:45 am

          It’s even more puzzling if you do not know how did you got poisoned second time? B12 …really? I keep reading steroids, I was given those last july when I had allergic reaction but it did not affect me . I was fine afterwards. But claritromicin, what a mistake man, uhhh will I ever recover from this. Did you check that facebook group that has over 10,000 members? They should have some sugestions.

  11. Chris A February 22, 2020 at 6:40 am Reply

    Lukasz, yeah I had a terrible reaction to Bactrim/Keflex combo in 2014. I have some of the same symptoms. I knew there was a problem on day 2 and was told to finish the 10 days at the ER. Many of my organs are affected (bladder/heart/brain/). I was diagnosed with POTS and SFN within a year. It’s very frustrating finding a doctor that believes it all. Nobody wants to testify in court. One thing that has helped me a little bit is LDN. Again, it’s hard to find a doc that will prescribe that, or even knows what it is. I know how it feels being left in the dark, but try to keep the faith. Btw, I lost 30 pounds within 6 weeks of this ordeal. I’m probably still 40 pounds under now. Nobody really knows why. Some doctors just say I’m at a better weight now. Unbelievable. Dont give up! 💪-Chris

    • natdavauer February 22, 2020 at 7:21 am Reply

      Hey Chris..
      Did you have any other antibiotics or it’s specifically fluoroquinolones? Or did your reaction come from the bacterium/kelex combo?

      My problems started after keflex but were totally livable for 6 months. An intense sickness followed by Cipro was when the real-life devastation started. But I’ve always wondered if keflex wasn’t really the beginning of it all. But have never been sure if anyone experienced real issues from keflex.

      • Chris A February 23, 2020 at 3:41 pm Reply

        I never had an issue with fluoroquinolones and I had been on keflex before without issue. When I was prescribed keflex with bactrim I had a major problem. Some things are really hard to pinpoint. I think of it all day every day and it happened 5 years ago. All I do is wait for doctors appointments and wonder why I stayed on it for 10 full days. I’m sure you and most others on this site are in a similar boat. I couldn’t post my story because Bactrim is a sulfonamide. Mine started with a crazy weakness that jolted me up in the middle if the night on the second day. If yours really came on a while after the fluoroquinolones (and I know that is possible) it becomes hard to tell what role the Keflex played. People tell me not to replay the past, but it’s very tough not to..

        • natdavauer February 24, 2020 at 8:10 am

          I’ve seen a lot of people pursuing FMT because I have as well. What’s interesting about that is people are coming from all different directions and most of them are due to antibiotic issues. But not just FQs. All different ones. Bactirim is actually one one I’ve seen people mentioning was at the root of their problems a number of times. It seems that there can be a chronic illness caused by disruption of the microbiome and a whole variety of antibiotics could be responsible for causing that destruction.

      • Chris A February 25, 2020 at 6:10 am Reply

        Natdavauer, yeah it seems like the gut plays a pivotal part in this. I had never heard of FMT before. I’ve heard the same that many different antibiotics can be a culprit in neurological manifestations, and many other problems. Most of my doctors say there is no way Bactrim could have caused this, and it is not a neurotoxin. One has agreed it could have sparked an autoimmune reaction though.
        Since the start of your problem has it gotten worse, better, or the same?

        • natdavauer February 25, 2020 at 6:21 am

          It’s been 3.5 years since Cipro and it’s been a LOT of ups and downs. All downs for the first 2 years. Some progress in the last year. Overall, it looks like a very long, slow recovery curve. Some days I feel 75% some days still 50%. But at my worst I probably felt 5%. I’d say I’m 60% recovered if I had to put a number on it.

      • Chris A February 25, 2020 at 11:02 am Reply

        It sure is a long road. It’s kind of encouraging that you’re making some progress. Hope that keeps up for you

  12. Jeff March 1, 2020 at 9:22 pm Reply

    So much of this is similar to my story. Struggling now for 14 months after I was given Biaxin for a lung infection. My world has been turned on it’s head and I’m not sure I will survive. 60lb weight loss, chronic insomnia, anxiety, tinnitus and worst of all, chronic neurological burning pain through 90% of my body, intracranial and spine pressure. The medical system is zero help after doing this to me. I’m a dad with little kids and was a caregiver for 15 years and now am shut down. Recent tests show I may have cns lupus or autoimmune disease. Clarithromycin/ Biaxin destroys gut flora and the blood brain barrier and ultimately destroys lives. Fighting for my life. Pray for me

    • L March 1, 2020 at 9:40 pm Reply

      So sorry Jeff. I was severely injured head to toe, with some permanent side effects. The best thing you can do is find integrative doctors or NDs. Much will not be covered by insurance, but for me it was the only alternative, or I’d have been long dead. And there are many ways to heal the gut…a number of supplements; but most importantly you need to avoid things that will further damage it, like gluten, processed foods, GMOs. Add good probiotics. The gut is connected to so many illnesses. But this is all much easier if you are working with an integrative health professional.
      https://www.mindbodygreen.com/0-24663/9-lifestyle-changes-i-always-recommend-to-patients-with-autoimmune-diseases.html

      • Jeff March 1, 2020 at 9:43 pm Reply

        Thank L. I tried two naturopaths protocols, probiotics, diet restrictions galore and clean diet, yet still immensely struggling.

    • Jeff March 1, 2020 at 9:41 pm Reply

      Forgot to mention the sensitivity to sound and light. Waking up…if I actually do sleep, is inexplainably excruciating, cardiac issues galore, difficulty breathing…the list goes on. It has near destroyed my once happy marriage…the list goes on. These bastards give this to little kids without a second thought. There have been class action lawsuits due to clarithromyacin causing neuropsychiatric disorders…but of course big pharma gets a free pass. Canada is a country run by criminal corporations who are above the law. Sick and disturbing!

      • L March 1, 2020 at 10:13 pm Reply

        I can relate. I had extreme reactions to light and smells. In fact at one point smells were SO unbelievably, twilight-zone strong that everything in the world asphyxiated me. I shuffled out one day, during my worst time, and made it about a half a block, and the smells were so terrifyingly strong I felt like I would choke. I couldn’t get back in fast enough…which was hard since I was barely able to walk. Turns out that awful, excruciating smell was….orange blossoms, normally one of my favorites. I could not have anyone come in to my apartment if they had so much as lotion on. It was like a super power that no one would want. It’s hard to explain just how horrifying this was. It was so beyond our realm of what is normal. It was like constantly being surrounded by open vats of bleach. I could not have lived had it continued. I was frantically calling people around the world trying to get help. It was actually painful to breathe. My ND had a tiny coconut tealight candle on his reception desk. When the elevator doors opened, I could smell it….and it was the equivalent of a half a block away. They would put it out, put me in a room by myself an shut the door. But I could still smell it for the entire couple hours I got my IV. It was beyond hideous (and at the same time I had major vision and breathing issues.) That really awful extreme (thankfully) subsided after a few months, but it left me with a real sensitivity. Can’t be in stores that have candles or other scented items.

        I also had a very short time of having sound issues. I was in a hospital (against my better judgement) and a big metal door slammed shut. Thought I would jump out of my skin. Also, things like kids crying in a store, was very difficult for me to hear. I also go tinnitus. and my hearing is worse which is weird, since loud sounds were unbearable.

        I had extreme light sensitivity. I would wear sunglasses, a hat, and still have to hold something in front of my face. Like the smells, it would hurt. Same with fluorescent lighting. Just unbearable. (I also had hundreds of floaters and other vision issues, like flashes of light.) This too has gotten better but is not gone. (diagnose with macular degeneration within a month of cipro) I can now be in a store with fluorescent lighting. It’s still not totally comfortable but much better. And still have some light sensitivity outside. A weird thing is if a look to the side with my left eye, everything is normal. But with my right eye, in the bright sun, it’s like a shade pulled down over it.

        I also had heart issues. I had pericardial effusion (fluid around the heart) and every MD wanted me on NSAIDS or steroids and I told them I couldn’t do that. I was fortunate enough to find, unbelievably, an integrative cardiologist. (She was the first MD, who when I showed her my 8 1/ x 11 single spaced list of side effects, did NOT roll her eyes. She just shook her head and started taking notes. She took and “wait and see approach” and had me come in every 3 months for an ECHO to track the amount of fluid. Then every 6 months. Then every year. It never seemed to bother me, so we didn’t do anything about it. She said it looked like it might be permanent after two years of echos. But last visti…it had actually gone down. I had horrible breathing issues where it would just cut off. like a door shut. A researcher suggested it was mitochondrial damage to the heart muscle.

        Canada doesn’t hold a candle to the US regarding big pharma /FDA corruption.

        I would make sure you are getting all you need regarding supplements for nerve damage, like the B vitamins. I would also take things like ubiquinol, pqq, and other mitochondrial supplements. There are several. The gut needs to be in good shape though, or you may not be able to actually benefit from supplements.

        It will get better. I am over 5 years out. But things like improved sensitivity to sounds and light and smells got better several years ago. Not gone, but certainly not effecting my life. Again I would urge you to find a natural health care provider, esp one that is familiar with fluoroquinolone toxicity.

        • natdavauer March 2, 2020 at 7:09 am

          Jeff,
          I’m with you on all of this. Extreme anxiety, depression, insomnia, sound sensitivity, head pressure, brain fog and gut problems were many of my most severe symptoms. Of course the list did go on and on beyond that.

          I’m three and a half years out and have seen a good deal of recovery. It’s still windows in waves though with ups and downs. But the sound sensitivity which was at an extreme level has gotten better. The anxiety has all but gone away even though I still don’t handle stressful situations well. The heart troubles which really made quality of life poor have gotten better. Head pressure is now my main problem.

          I’m a big believer in fmt. Fecal matter transplant. I’ve done it at a clinic in the UK and I believe it helped a lot. If you feel like your gut is truly the center of the problems it is the ultimate turn around for restoring the microbiome. It can be done diy with a well vetted source. I lost 40lbs and all my muscle. I’ve gained the weight back and much of the muscle. I credit FMT for that.

          Also like you, I don’t think my marriage will survive this. Things have been said and opinions made clear that just can’t be undone. It’s a situation that shows who you really are when worst comes to worst. Both for the sufferer and those around them. I feel for you. But I do think you’ll get better over time. It’s an excruciating journey and we’ll all have PTSD of some sort even if we do recover. Besides FMT there was no magic cure for me except time. Music, audiobooks, meditation all helped just bide time. Stay hopeful and believe you’ll get better even if you don’t believe it yet. I pretend I’m in prison and will eventually get out. or I’m on a boat crossing the ocean but will eventually get to the other side. I believe we will make it through this.

        • Jeff March 4, 2020 at 12:07 pm

          Hey L,

          Sounds like you’ve been through hell as well. My smell went the other direction, Same with taste, where they were almost gone entirely for a long time. Now my smell has returned to a degree but taste comes and goes. For six months everything tasted like rubber and metal. Now that is on and off depending on what I eat. Eggs and dairy especially bring on that horrid taste, which I mostly avoid anyhow being that they are food that crank on my symptoms. Mainly being the chronic burning agony in which I endure on some level every day. Is hard to take. Areas of improvement have been sleep and anxiety. Months back I would pace 72 hrs straight, it was madness. I don’t know how I survived it to be honest. Now I sleep an average of 4-6 hrs per night and anxiety is somewhat more controllable, though always looming and threatening. My skeletal structure cracks and is sore. I’m positive I’ve lost bone density mass but of course my dr doesn’t see the importance of testing. But ya, my nervous system has caused my skin to never be in a state of comfort and constant intracranial an. It burns like a bush fire constantly. I’ve tried loads of supplements and probiotics on two separate naturopaths direction and honestly don’t feel much better for it, and am out of coin to pursue that further. I’m now considering fmt as my best option but again, my dr knows nothing about that so I’m on my own to figure out. Sick of living in this altered painful reality but is encouraging to hear from you and others who have endured it for years and made progress

        • L March 4, 2020 at 1:37 pm

          And doesn’t it just suck that when our senses go “off” it is always in a really unpleasant (understatement) way? After the initial terrifying hyperosmia where everything asphyxiated me and made me choke, the phantom scents that remained were always disgusting. The first couple years they smelled like dirty wet ashtrays. Then they morphed into some weird hard to explain chemical scent, bordering on a rotten egg smell. Never anything nice, like lilacs or baby powder. (speaking of which, when I had to go every three months for an Echo for my heart, they would rub this gel on that had a smell like baby powder, which normally I would have found pleasant, but during those first couple years, I would be in tears the whole time because it would choke me, it was so strong.)

          And I know what you mean about the anxiety. Really hard to describe the degree of torture that was. Just 24/7 of ‘I’m being chased by a bear,” being trapped in sympathetic mode nonstop. I would spend most of the hours of the day either curled up in a ball, in excruciating pain, or pacing and crying, and tryin to figure a way “out.” I had suicide on my mind all day and all night for the first year or so. I was wondering if I would ever breathe normally again, if I would lose my vision altogether; if the excruciating pain in my back (real down in the bone, untouchable pain) would every go away; if I would ever sleep normally again; if I would ever be a normal weight again—had gone from almot 140 to 90-something in three weeks.) I honestly don’t know how I am still here today. But yes, hang in there. It will get better. And once the gut is under control you will find a lot of other things improving.

        • Jeff March 4, 2020 at 2:29 pm

          Hey L,

          A hardwired anxiety that nobody other than others who have experienced could possibly understand. I was never an anxious person before the Biaxin through the early months everyone was telling me to”remember to breath” and to “snap out of it”. I’ve lost many important family and friend relationships because of that alone. People tagged me as simply becoming a nutter and won’t listen to my rants about being trapped by this poison ruining my gut and cns. This experience has shed all but the most devoted people in my life and I fear that in time I could lose them all. My best friend telling me last night that the reason that I never feel tired is because I don’t do enough. They just don’t understand. I had to retrain my brain to fall asleep a different way as I don’t nod off or drift to sleep. Now it’s a forced, no thinking on to off, nothing in between. I hate it! Never nap, never feel physically or mentally comfortable, just endure it and try to stay strong. I swear that it has caused a form of encephalitis and that’s what drives the beast but good luck ever getting answers from the medical system here. My heart is better than it was but still hurts and runs off at 120+ for no reason whatsoever. I was recently referred to a neuropsychiatrist who has diagnosed me with Functional Neurological Disorder, but I know it’s just an umbrella “we don’t have any answers as to what’s wrong with you” tag. He claims that through his program I can retrain my brain to settle and ground itself back in normal function. He believes the bacteria that initially caused my lung infection caused this and likely not the Biaxin. And now with my recent blood tests pointing toward autoimmune issues, he claims a retrained brain can control the gut back into balance. He’s not pushing meds thankfully but I’m honestly not grasping what he’s saying. Been to two of his sessions now which are basically science of the brain lectures. It’s all so bizarre and hard to focus through the symptoms. I told him to get to the meat of it but he says it’s a process. Anyhow, 14 months in and I’ve actually forgotten what life on the outside was like. Desperate to reclaim it all the same. Head pressure is so brutal today sigh…Thanks for the encouragement and sharing your own struggles and endurance. Is much appreciated.

        • L March 4, 2020 at 8:15 pm

          Yes, no one who has not been through this could possibly understand. Even one of the people who routinely drove me to appointments when I was unable to drive who saw me become a shell of my former self…who saw how difficult it was for me to breathe, to walk, to function…even she would make little comments under her breath. IT was so disheartening. I mean I have on occasion prior to Cipro experienced what I THOUGHT was anxiety. But I had no idea it could reach the terrifying heights it did.

          And fluoroquinolones have been linked to immune disorders. And some of the best things to do are the hardest to achieve with flq toxicity. A lot of good sleep and a great working gut.

        • Jeff March 6, 2020 at 2:39 pm

          Hey Nat,
          No reply tab on your comments so I’m replying here. I’m in Canada. Health care is on third world level here, almost non existent in BC where I am unless you’re in need of basic care. I have been diagnosed now with FND functional neurological disorder by a nneifopsych dr. He also now believes I’m suffering from an autoimmune disorder and sending me for a whack of tests, possibly a lumbar puncture. Took me 14 months to get this far in the system. Honestly feel the FND tag is just an umbrella for “we have no idea”. Anyhow I’m off all meds. In past months tried various painkillers to no avail and honestly feel they set me back further and did more damage. Most recently dropped the .5 Ativan that I took for almost a year. In the beginning it took the edge off but in recent months seemed to increase everything. I cut in half for two weeks and stopped entirely about 2 weeks ago. My main symptoms are the chronic burning in 90% of my body and the spinal and head pressure. Did you experience this burning as well? It feels like an extreme electrical burn. It’s honestly hard to bare and it totally shuts me down. The anxiety panic insomnia and tinnitus are also constant battles and if I do manage to sleep, waking up is terrifying. I’m starting on the fmt in my own as medically I have no support in that front and can’t afford private, even though I don’t think I’d find it privately here. Food intake is becoming increasingly more difficult as it drives all symptoms. I’m sure the blood brain barrier has been compromised due to clarithromyacin destroying my gut flora. I really appreciate your words of encouragement and endurance. There are so many of us with similar situations that it’s hard not to think that these antibiotics are designed to do exactly this. It’s sick to know that the system in which people go to for help is destroying people’s health and lives for profit and or other political agendas.

        • natdavauer March 6, 2020 at 8:43 pm

          Sorry to hear that. I didn’t have the burning. I do have constant vibrating and buzzing. Tinnitus of course and for a solid 2 years had tremors which would never wax or wane like the other symptoms. But they’ve gotten so much better I rarely think about it anymore. Just fine movements are hard.

          I did get an lp and nothing came off it except horrific headaches and back pain for months. I’d caution against it unless your Dr is pretty sure there’s something there.

          FND isn’t very meaningful to me either. I do however believe there is a strong mind body connection when it comes to health. Both wellness and disease. And I think this condition is like the ultimate mind body disease.

          I actually remember there is a taymount FMT clinic in Canada. Vancouver island I think. Still expensive I’m sure but less travel at least.

          Music really helped me in the worst of times. I’m not even religious but believe it or not, the kinda chanty meditative stuff helped. I’d listen to it during times when sleep was just impossible and it was like a trance that was kinda like sleep. Anyway, an option.

        • Jeff March 4, 2020 at 2:45 pm

          Also, if you or others here have any tips on tinnitus management I’d love to know. Been listening to my ears scream since this started and it’s excruciating at times. After eating it often hits piercing levels that feel like an audio razorbade in my brain. My vision fades in and out as well. Almost blind at times, then will break through for a few seconds of clarity. Have you regained vision with time ? My tremor is getting harder to control as well and at times feel like my cns is going to completely fall apart. It’s all so ruthless and terrifying. Fighting as hard as I can to get through for my kids.

        • L March 4, 2020 at 4:43 pm

          Yeah I’d like that too tinnitus drives me insane (r)

        • natdavauer March 5, 2020 at 7:40 am

          Hang in there Jeff. Everything you say happened to me and I felt the same way at you. It sounds like you’re really at the peak suffering right now. And I do believe there is a peak. I think everything ramps up the first year and the second year is the worst. Third year you start to get some windows that some things might get better and forth year you have lots of issues but it’s clear things are improving. I hate to give timelines but I feel that’s a similar one for L and others I’d say had a severe CNS reaction.
          If you’re in your second year, be prepared for hell. Take it day by day and just write this year off. Just focus on surviving it. You will see some windows of hope down the road.
          The head pressure was like a form of encephalitis that terrorized me all day, every day. Unfortunately, although the extreme highs and lows are better, I still suffer it and I’d say it’s my most desperate current problem. I believe it’s left a dysfunction of the hydrodynamics in my head.. ie the CSF flow and blood flow are not working right. I’ve spoken with others with the exact same specific situation. Some have cured all their issues with neck surgery to remove the pressure and open up CSF flow again. Not sure you’re in need of specific info in that department yet, but lmk.

          I’d join the FMT group on FB. Lots of people with all different abx damage there and a lot of thoughts and opinions if you need them. I did everything bottom up and have never done top down but honestly think I probably should.
          I started with my 9yo kid without them knowing. Saw progress so booked a week at taymount UK. Expensive for sure. (I’m sure I’ve spent over $75k on this whole ordeal). Diy is not hard and frankly I don’t find it gross or messy if you’re neat and organized. Living this hell resets your idea of what is “hard.” But you have to follow the testing protocol to find the right donor to make sure they don’t harbor something that makes you worse. My daughter I knew everything about as far as health history. Someone else you’d have to get all that info and blood, stool tests.
          Taymount takes all that work out but for a price.
          Are you in US or UK?

          The panic, acrophobia, insomnia are clearly the CNS stuck in sympathetic mode. I think ithas a lot to do with gaba function. I found that whole host of symptoms to cross over identically with people in benzodiazepine withdrawal. I did a test of taking more benzos than I ever had before for just a few days and found so many of those symptoms relieved. I quit after those days though because I know of course that you would end up in benzo withdrawal anyway since all of those people are suffering the exact same situation. So benzos could potentially relieve that right now but would only kick the can down the road and potentially make it worse when you stop. I mention it because I do believe in a truly suicidal situation it would be worth going on them and potentially staying on them for life if that was the only alternative. But on the upside it seems every person in benzo withdrawals does recover even if it takes a couple years. And the psych stuff took me a couple years to get over. It seems Gabba damage does heal but takes a long time. You just need to buckle down and make it to the other side.

          I’m here to tell you that giving your description you’re not alone. Sounds very, very similar to what I’ve gone through. And I can tell you there is some hope. I’m not recovered but I am far from the absolute desperation that I was in and sounds like you are in now. We used to wait days or at worst weeks to recover from being ill and we’ve had to readjust that time frame to years which has been very difficult. Like you, I have forgotten what it was like to be normal and healthy like I was. On the same note 4 years is only a fraction of my life and the distance I’ve come in the last 3 years gives me hope that I can get close to where I was before this all happened. I believe you can too

  13. Jeff March 4, 2020 at 1:52 pm Reply

    Hi Nat,

    I really appreciate the encouragement. It’s sad to know that you and so many others have also been through this nightmare but great to know that you’re still here and making positive progress. It gives me hope and strength and that’s the only way through 🙂
    Sorry to hear about you’re marriage taking such a huge hit as well. It’s been so hard to fight this and see my wife drift farther and farther away. So true on how things have been said that can’t be undone. I’m still fighting to save my marriage none the less. I feel like if I can access the true me beyond this, all would fall back into place. Maybe a long shot dream, but I have to try.
    I’d love to pick your brain more on the fmt. Feels like it makes the most sense. My dr. Of course isn’t on board so I’d likely be on my own to figure out. Thinking of a small healthy blood relative as a donor. How many times did you do fmt? And was it encapsulated oral route or the opposite end? Thanks

  14. Jeff March 14, 2020 at 12:22 pm Reply

    Hey Nat,

    Good to know on the lp as I’ve been strongly considering it. Sorry to hear it caused you extra suffering. I definitely don’t want to add to it if it has no value in accurate diagnosis or relief of symptoms. I didn’t know there was an fmt clinic here, so good to know. I likely can’t afford it but at least is close by if I did decide to pursue it. My Dr is now on the hunt for lupus or another autoimmune disease being that my ANA titre came back red flagged. It does look to me that autoimmune issue is a strong possibility. Diet affects my symptoms so extremely which is definitely an autoimmune response. Did you find diet to make your symptoms worse? And if so, did that fade with time?
    Music has been great medicine for sure. I’ve always liked meditative type stuff anyhow so that comes easy. I also find a lot of traditional middle eastern and Indian music relaxing and helpful. I’ve been getting a bit better sleep the last few days. Not great but better, like 4-6 hrs per night. Waking up is always rough.
    As you say, it’s the ultimate mind and body disease. I couldn’t agree more.

    • natdavauer March 15, 2020 at 6:57 am Reply

      Diet made a huge difference. I’d have a meal and then just crash completely and go to er only to find nothing wrong. Could never pinpoint any food as a cause because it seemed to be random. It did get better over time and I’m close to normal as far as diet now

      • Jeff March 15, 2020 at 10:12 am Reply

        Eating feels like dosing every time . U stay away from the big no’s like sugar wheat dairy as much as possible but I can eat basic stuff like baked free range chicken and steamed kale and have massive head and spine pressure, burning, insomnia and huge anxiety afterward. Is what has me really concerned about autoimmune lupus, ms or other. My neuro throwing around demyelination as a possibility. All very frightening. Hearing what you say gives me hope that it’ll just turn around with time. I’m waiting for info back on fmt with The clinic you informed me on. Thanks for that.

        • natdavauer March 15, 2020 at 10:17 am

          Yes. The head pressure and then downstream neuro reactions were always the way it worked. And still the way it works although not as extreme. I’m at a fundamental loss as to knowing whether there’s some kind of structural problem causing the pressure and secondary symptoms or if there is some sort of infectious or other damage that causes the feelings of the structural issues and pressure. God damn mystery.

          I will say that I think blood sugar was also nonfunctional although I don’t understand how and why. I do know though that I would avoid sugar because everybody said so but when I did have sugar I would feel significantly better. I tested it too many times for it to be untrue. It was a fact that if I ate extra sugar I felt better. Many diets out there are based on fear and elimination which I completely understand because I lived that. But I ended up eating extra sugar all the time in the end.

      • Jeff March 15, 2020 at 10:29 am Reply

        Strange twists for different people in the way it hits us. I can say from experience that sugar is hands down the worst thing I can put in my body. It causes the neuro burning pain to the extreme as well as all other symptoms. But like I say, even foods I’d deem safe have affect. I used to live to eat and cook healthy ethic fare and now I dread eating, having to force myself and then be punished for it. I also was accepted at the local university to be a test subject for advanced brain imaging on their DTI machine. Hoping to find clarity…or nothing so I know for sure things are intact in there, as it sure doesn’t feel like it.

        • Chris A March 27, 2020 at 8:03 am

          Jeff I know sugar can be toxic to our neurological system, but another interesting fact is it’s effect on the gut. You probably know that bacteria eats sugar, and these toxins in our gut multiply, causing symptoms. It’s a strange immune balance. If we have nerve damage, sugar may exaggerate it. If an autoimmune response was triggered by the antibiotic, then I think the gut is a factor. They say even eating garlic or immune boosting foods can exacerbate symptoms in this case.
          I have severe weight loss that started right away with bactrim in 2014 (along with pots/ sfn). I wonder what the weight loss is all about? I’ve heard of many “floxies” that have it. I’m not sure if its malabsorption, muscle related, or hypothalamus/ pituitary/ adrenal related? It really is exhausting when you spend half of your time researching what exactly went wrong, and how to correct it.

        • Jeff March 27, 2020 at 11:08 am

          Hey Chris,

          Yeah it’s all very overwhelming. I never stop researching as that feels like giving up but it’s hard to nail anything solid down. I’ve thought as well that it’s HPA acid related and is most definitely a gut imbalance issue. I’ve cut out garlic, wheat, sugar and nightshades but it seems everything plays a negative influence to some degree. I’m also wondering now about a cerebral spinal fluid leak as CB my spine pain is constant and super intense. Also my tinnitus is getting worse on the left side. Sounds like a dental drill burrowing into my brain and is seriously playing on may already fragile sanity….as well the constant intracranial pressure. I’m now at over 50lbs lost and lost so much bone density and muscle mass. It’s beyond criminal that the medical system gets away with destroying people’s lives and continue to do so with absolutely zero accountability whatsoever. I’m uncertain if I will survive it. I have everything to live for with my beautiful family and am literally in a fight for my life. Western medical of course has no answers beyond denial and offering more pharma poisons and naturopaths an alt approaches expect $$$$ for a big gamble that usually ends up not improving much. Still considering fmt at the huge cost it is. Otherwise, everyday I wonder if my heart will seize or I’ll have a massive stroke. Trying my best to endure it and hoping time and lifestyle changes will heal me. It’s all I have. Wishing you all the best as well.

      • Jeff March 18, 2020 at 10:07 am Reply

        Hey Nat,

        Just wondering, have there been any symptoms that disappeared entirely with time? Or did they just lessen to a tolerable / liveable level? Do you still struggle with tinnitus and over sensitization?

        • natdavauer March 19, 2020 at 7:20 am

          Some things have gone away entirely and some things are just lessened. But some things that have gone away entirely have come back here and there. While some other things that have gone away haven’t come back. I haven’t made a list to reflect all of this because frankly when things are gone you want to forget they ever happened. But early on I did make lists of issues and they were long. 30 or 40 specific conditions.

          Something like tremors… Quite bad at 1st and were with me every second of the day even when other symptoms would change the tremors would stay the same. For at least 2 years then they faded away and one day I noticed they were very minimal. I’ve recently experienced a setback and they returned. They definitely seem to be linked to the weakness of the nervous system and clearly my nervous system will probably always be weak and susceptible to set backs.

          The psychological issues and acute anxiety and derealization have slowly faded over time and I would say are mostly gone.

          But the issues in what feels like pressure in my head leading to brain stem compression or something get chronically worse with time. I think the connective tissue damage to the joints of the neck and the tissues containing CSF and the Brain are weakend and gravity over time leads to pressure issues directly on those central nervous system nerve tissues.

        • Azz March 23, 2020 at 11:17 pm

          Hi Nat, I’m glad to hear your psychological issues have improved, how is your depression? I’m still fighting this beast after 3 years and Im constantly worried it will be permanent. My physical issues have resolved the most, I can even go for runs but I fear the brain damage will never resolve.

        • natdavauer March 24, 2020 at 7:02 am

          Recently I had a huge setback. My grandma died and I slept at the hospital on the bad bed. The stress of her dying didn’t help but I truly think it was neck issues on the bed. 12hrs later I suffered an cranial high pressure episode I haven’t seen for a year. All kinds of shit is back after that. POTS, tremors, light-headedness, confusion, fatigue and maybe depression. Lost a year of progress at least. I can feel the back of my head, brainstem etc are all messed up. I had been having good windows where I was feeling 75% maybe.

          The depression was better though. I think it’s seretonin in your gut and/or endorphins. I think we stop making both after floxing.

        • Jeff March 24, 2020 at 12:04 pm

          Hi Nat,

          I’m so sorry to hear about your grandmother and the set back. I hope that it is only a minor setback and that you recover as quickly as possible. I agree about the serotonin depletion.

        • mmec7 May 3, 2020 at 5:02 pm

          Lucasz – Head and neck symptoms. Have you seen a neurologist – rule out multiple sclerosis. Or perhaps Arnold’s Neuritis. If this is an iatrogenic result of that blasted quinolone, then you need to find out ‘what’ it is, then, with a Dx, you cab deal.
          But for heavens sake stay well *clear of MRI dyes – horrible side effects. MS can be diagnosed with a straight MRI, preferably 3-Tesla. Also side step and lumbar puncture procedures. (They can be very nasty).
          Hope you can sort, Take care.

      • Chris A March 28, 2020 at 5:39 pm Reply

        Hey Natdavauer, I would say the brain fog and drunk (almost toxic) brain feeling was pretty constant for the first few years. After that it seemed to not be present at times. It seemed to gradually not be there as often the last two years. This all started in 2014. It was a very gradual process for me. I do still get pain, bowel and bladder issues (leaking at times). I get flares where I have no urge to urinate and I’m very dizzy for months on end. Now I seem to be urinating way too much. I get lightheaded walking long distances. I’m still about 30 pounds under weight. Still get tinnitus, dry eyes, and on and off fatigue. Im looking at Central Diabetes Insipidus now. I drive myself crazy online researching unfortunately.
        Somehow the head issues have gone in the right direction..

        • Azz March 30, 2020 at 2:15 am

          I’m glad to hear you’ve improved, I’m guessing you also suffered from depression? This is my most hated symptom

        • Jason April 16, 2020 at 3:50 am

          Hi Chris.
          It seems to be a very long process for sure.

          How long did it take for the panic,mania or anxiety to go.
          I sometimes feel somewhat like myself then bam tripping on acid feeling and full of panic and anxiety. These seem to be my worst symptoms as brain fog and other simular issues have passed for the most part.
          The tremors haven’t left yet unfortunately and tendons in my arms are awful.
          I’m.putting weight on all the time almost up 40ib I have no idea y I have put it on when so many have lost it.

        • natdavauer April 16, 2020 at 6:44 am

          I had just terrible issues with my arms and especially my forearms. Never got an answer as to why they were affected so dramatically. Was a long time before they really started to feel normal but they have felt 85% for a while now and I can’t even remember when they started to feel better. Most things it seems with this heals so gradually you don’t even notice until you look back six months or more.
          The nervous system is hit so hard it’s difficult to know where the damage is fundamentally. But the “feeling better and then, bam anxiety and everything hitting” was very common for me. That also has waned thankfully. Same with the tremors. Talking with others I think it has a lot to do with gaba damage. I think that neurotransmitter is responsible 4 many of your most fundamental feelings of wellness in your mind as well as muscle control and growth. Not really sure but there are so many crossovers with these symptoms for people in benzo withdrawal And their fundamental problem is gaba damage. The recovery timelines are very similar taking at least a year and often more for their gaba damage to heal.

        • Azz April 16, 2020 at 11:21 pm

          Sorry to hear about your grandma, are you feeling better from your recent setback? I also had a pretty severe setback after staying in the hospital with my wife when she had the baby, I was thinking it’s because of all the sanitisers everywhere and as you know their pretty hardcore in hospitals. I agree, improvements are ever so slow it’s hard to even notice it and when I think I’ve finally turned a corner it goes to shit again. But I’m greatful I no longer hallucinate anymore as that was a living nightmare. This year has been extra difficult because of the baby, my wife has to do most of the work as I feel dreadful most of the time and I guess she really doesn’t understand what I’m going through. I think anyone severely affected can relate to that.

  15. Jeff March 27, 2020 at 11:11 am Reply

    *HPA axis was what I meant to write

    • Chris A March 27, 2020 at 6:31 pm Reply

      Hey Jeff. I knew what you meant about the “Axis.” Yeah It’s so much trial and error. I took Bactrim, and on day 2 of a 10 day course, I had a massive weakness. The Pots, SFN, tachy-brady, pain, weight loss, bladder and bowel issues, floaters, tinnitus, etc. had nothing to do with the medication according to most of my docs, very frustrating. They cover for each other.
      I’ve heard that CFS leaks cause orthostatic headaches that worsen later in the day. Pots can cause headaches upon sitting or standing too. Usually in the lower back part of the head.
      As far as diet, for me white meats/fatty fish, and veggies are the best. Dairy, gluten, and sugars are bad. I found a doctor who prescribes LDN, and that can help with pain and inflammation. Mestinon can help keep you in a parasympathetic state if that is an issue for you.
      It’s really hard to balance family, and regular life when you’re always researching ways you may feel better, or get a concrete diagnosis. My parents are devastated, and I drive my wife crazy with research and constant appointments. It’s tough to cut out the stress, even though stress is bad for us… I’m trying to think of little things that have helped me over the last 6 years. if I come up with anything else I’ll send a message.
      Hopefully you can forgive this “big pharma” society, the doctor’s responsible. It took me 5 years to start to forgive myself for staying on that crap for 10 days when I knew it was a problem on day 2.
      Never lose hope because you never know what tomorrow may bring, or what God may bless you with.
      I truly hope we all get answers and relief someday soon! – Chris

      • Jeff March 28, 2020 at 10:32 am Reply

        6 years? I’m so sorry you’ve suffered so long. What do you feel has improved, stayed the same or gotten worse over that time? My neuro dr. prescribed LDN. After the second dose I became manic and it caused hallucinations, made anxiety even worse and anxiety beyond control. I have no idea what it is about pharmas but I always react to them adversely. Every one I’ve tried has only set me back and added more symptoms. I’ve never tried Mestinon but at this stage I have major med anxiety and struggle to not fear the worst. I weaned myself off .5 Ativan about a month ago and since that time have been pharma free. It’s a struggle for sure, being that the pain is so severe and I’d love nothing more than something to take the edge off other than ice packs, which I keep on my spine in almost all waking hours. I don’t know if I’m capable of forgiving the system for taking what they have from me and my family. I know it’s not healthy to hang on to resentment so I try to not dwell on it, but these criminals are continuing to dole this poison out to others, even little kids. It’s all for profit of course and they’ll deny it all the way. It’s sick and there needs to be accountability absolutely! I also could have stopped at two doses too but took eight of the ten prescribed. Anyhow, what’s done is done and now I’m set on surviving it the best I can. I have everything to live for and fight so hard everyday to overcome it somehow, someway. Life is truly a gift, I mostly feel guilty for what I used to take for granted. I’m so grateful for my kids, parents and wife for supporting me through it all. I in no way could have come this far without them. I really appreciate your encouragement and support Chris. I wish you and your family all the best.

        • Chris A March 28, 2020 at 11:45 am

          Thanks Jeff. I would say the thing that has improved the most over 6 years is my head. The head pressure, confused feeling, and a near constant feeling that I drank alchohol. I had that cotton 8n the ears feeling too. Those are the things that I get less frequently than before for some reason.
          I totally understand your reluctance to take pills. Yeah I went to the ER on day 2 and was told to continue, and contrary to my common sense reaction, I listened. Forgiveness is tough. As you said, “what’s done is done.”
          I wish you the best in your recovery. -Chris

        • Jason April 14, 2020 at 4:17 pm

          Hows everyone doing this year.
          Hope its good and recovering

          Making some leaps and backtracking myself but being positive as much as we can i suppose.

          Hope all is well.

      • Jeff March 28, 2020 at 11:42 am Reply

        Meant to mention as well that lean poultry and fish and green veg seems to be he safest route for diet. I get depressed though about all the stuff I used to enjoy eating so much. I cave every now and then and eat what I want and then get tortured for it. It’s a cruel reality.

        • Chris A March 28, 2020 at 11:47 am

          Yeah diet takes a ton of self control. I wish I could eat things I used to! I totally hear you Jeff!

        • natdavauer March 28, 2020 at 2:21 pm

          Hey Chris,
          I know we’ve suffered the same symptoms so whatever happened in this happened to us in the same way. The head pressure, confused, drunk feeling is my main problem now and everything else stems from it. When would you say that started to clear up for you? What’s left as your main issue now?
          Thanks

        • Chris A April 22, 2020 at 1:21 pm

          Hey Jeff I saw on one of your comments that you’ve lost considerable weight and muscle mass as i have as well.
          Have you ever explored muscle biopsies or mitochondrial testing? Its interesting because the lean meat/veggie diet benefits may suggest this considering that is a diet that feeds mitochondria.
          It also is anti-inflammatory, so it may be unrelated to DNA.
          Just curious. Even if a Muscle biopsy shows abmormalities i dont know if it can be corrected with meds. I did hear that Alpha lipoic acid, L Carnitine, NADA, B2, and CoQ10 can help mitochondria.

        • Jeff April 22, 2020 at 2:00 pm

          Hey Chris, thanks for your suggestions. Muscle biopsies are a good idea, something I haven’t thought of before. My GP and neurologist flat out refuse to do DNA or mitochondrial testing, claiming that it’s unnecessary. I’m sensing that if the tests came back positive for damage, it’d point toward the biaxin doing that damage and they want to keep those tracks covered for potential liability. So, in turn I’m paying a private dr. to do these tests. He’ll be sending my bloodwork to Germany later this month for a wide scope analysis. Will also be checking for lyme as I did pull a tick off my arm at one point, a year and a half ago. Have you had any of these tests done? Muscle biopsy, DNA or mitochondria? I’m continuing to drop weight and the tinnitus and awful burning neuro pain are all still persistent and I’m struggling to cope. I wonder at times if I’ll make it through this but am giving it all I have. All the best.

  16. Jeff April 22, 2020 at 2:08 pm Reply

    Also Chris, thanks for the supplement suggestions. I’ll have a look into those. I am at this point, very wary of trying new things to take as it seems my fragile system almost always reacts adversely. The last thing I tried was low dose naltrexone, which the neuro dr said was ideal and totally safe for my situation. It caused hallucinations and a manic state that lasted 48 hrs. I’m almost certain the biaxin caused a severe autoimmune disorder and that my blood brain barrier / gut connection is way out of whack. Things that seem to sit fine with others hit me like a sledge hammer.

    • Chris A April 22, 2020 at 3:43 pm Reply

      Hi Jeff. Im very reluctant to try anything. I do believe that many doctors are afraid to uncover the truth due to liability. My neuro said he would set me up with genetics testing and never did. I read that there is little they can do with nonspecific abnormal muscle biopsies unless its a disease process. I get tired of trying all these new things, starting over with new specialists and getting refferals. It usually doesnt get me too far. Ive never had a muscle biopsy. My father is a potential “floxie” and his was abnormal.
      I think the best bet seems to be diet, keep moving if possible, and try not to stress, even though that is rediculously tough. For me the weight loss is tough because its a reminder if all this stuff. I wonder too..is it autoimmune related or just damage?
      Try to keep positive and keep the faith. People do recover with time quite often. Thanks for the info Jeff

    • Chris A April 22, 2020 at 3:51 pm Reply

      Jeff, When i said Im reluctant to try anything, i mean meds. Im up for any tests. Ive had a positive tilt, abnormal QSART, and abnormal skin biopsy so far but i know there is more to it.

      • natdavauer April 23, 2020 at 7:27 am Reply

        Hey Jeff and Chris,
        I feel for you. It sounds like you’re really in the thick of the reaction. Everything you say I’ve been there. all I can tell you is that the tests never led to anything and the doctors were never able to offer any help whether they believed in the cause or not. In hindsight all of that ended up being irrelevant. Even though like I said, I totally empathize because I was making appointments with dozens of specialists and taking every test possible wanting to find answers. I would try many treatments and always have an adverse reaction to them. Almost anything. I had a skin biopsy that showed nothing. I had a positive tilt table test but it didn’t amount to any treatment. I saw a geneticist after a positive test for porphyria that didn’t amount to anything. I took a ldn with mixed results.

        As time went on symptoms eased slowly. it really seemed like it was just time that helped. A lot of time to be sure but just time. I know that’s hard to accept and again 100% understanding on my part as I kept actively trying to find the answer and the treatment. I’m not fully recovered and still suffer a version of everything you say but it’s just milder. I’d say I fluctuate between 50 and 75% recovered. I don’t care about the doctor’s opinion so much. I’m not too worried about any treatments or test results. I know it’s some extensive system nervous system toxicity. Where all of our body that is connected by the CNS is dysfunctional.

        Incidentally I got very sick a few weeks before getting Cipro. After I got Cipro everything got so bad it’s impossible to know what cause what at that point. But in the weeks before I think I may have gotten Lyme. I’ve seen many Lyme doctors and have partially focused on that the whole time as well. As the CNS toxicity from Cipro seems to be waning overtime I think many of The chronic issues might be lyme. I really have no idea and this is based on very little, but I’ve crossed paths with a few people who have similar stories. At this point I do Wonder if there isn’t some chronic infection and disturbance of the microbiome that sets you up for this adverse reaction to antibiotics.

        I’ll let you know if I find anything definitive but just wanted to say 1, that everything you’re going through I went through as well. I never found any answers or treatments and 2, please know that time does heal in this situation. For me I’m at three and a half years and it seems like a lifetime, but it isn’t. Maybe in 5 years I’ll be back on track and 5 years is a very long time but it isn’t my whole life. I’m middle-aged and I think the older you get the harder it is to bounce back from the reaction. I’m probably right on the edge of being able to recover. I’m still hopeful for a hundred percent recovery but would be happy with 90%. Hang in there guys.

  17. erik April 25, 2020 at 2:54 pm Reply

    Hi all. Has anyone seen this Dr. Mark Ghalili doctor.
    https://floxiehope.com/2020/04/25/fluoroquinolone-toxicity-featured-on-the-doctors/

    • Lukasz May 5, 2020 at 2:07 pm Reply

      Hey erik,

      I’m seeing him on June 3rd for a 5 day treatment. I’ll let you and others know how it went.

  18. Lukasz May 1, 2020 at 8:59 pm Reply

    Hey there folks.

    It’s been awhile.

    Still alive here. Just barely though.

    How are you all coping as of late?

    • Azz May 2, 2020 at 12:05 am Reply

      Good to see your back I was starting to get a bit worried. Well, I’m still struggling and holding on to hope I can recover by the 8 year mark..5 years to go. Have you had any improvement?

      • Lukasz May 2, 2020 at 10:37 am Reply

        Sorry that you’re still struggling, Aaron. As you can tell, I’m in the same boat. I did experience a short window of overall improvement recently after consuming high doses of vitamin D, alongside vitamin A, L-Glutamine and colon-specific probiotics, but it’s back to the misery now. I’ve stopped the L-Glutamine now to see if it was making matters worse but am continuing with the other supplements. Besides this, there’s been no improvement. FMT is now my final hope.

        On a happier note, how is fatherhood treating you? When did he/she come into the world?

  19. Lukasz May 1, 2020 at 9:02 pm Reply

    The latest from my camp:

    • L May 2, 2020 at 12:01 am Reply

      While it was nice to hear from you again, I am just so so sorry that you are still in so much pain. I hope you hang in there, but I certainly understand your desire to just leave the body behind. I prayed for death every day for the first year or so. We’re on about the same time line. I am almost 5 1/2 years out. I still am dealing with issues, but the worst ones are gone. (And it only took $60,000 and over 150 IVs! And I did NOT have the $60,000 to begin with. I went into to debt. It was either that, or hang it up.)

      Where is the pain and what have you tried to alleviate it? Pain is a hard one, and yet my excruciating midback pain I had…where I would just curl up in a ball and cry because it was so horrific, was one of the first things to go once I started IVs. (I don’t know which one helped but suspect it may have been the phosphatidylcholine.)

      I was just reviewing the Canadian segment by 16 x 9 on fluoroquinolones. It’s an older piece. There was a researcher from U of Victoria in it…quite critical of the pharma industry. I thought perhaps he could direct you to someone there. When I tried to find him though in the directory he was not there. His name is Allen Cassels…there was someone with the same last name, but the first name Jamie. Then I found a paper that he wrote and it did have an email address on it, but this was from 2011, so probably not good anymore, but, here it is if you want to give it a shot cassels@uvic.ca. That’s what I did when I was dealing with things and had no hope. I just started doing searches, and calling people and sending emails. I got some good info back too.

      I wish there was something I could.

      • Lukasz May 2, 2020 at 2:04 pm Reply

        Hey L,

        Thanks for your concern and kind words.

        To be perfectly honest with you, if I wasn’t holding onto the prospect of FMT getting me back on my feet and living again, I would have already committed suicide. I’ve read enough about the subject to know that FMT is my final hope for any kind of recovery. There are too many similarities to my own state and that of past FMT recipients, for me to not pursue it. In fact, I’m kicking myself in the ass for not going down this route earlier, but there were other non-intrusive methods I needed to tick off the list before going down the route of FMT. If FMT is unsuccessful in bringing back some form of order as far as my health is concerned, then at least I can die knowing that I tried everything to reverse this brutal situation. I just hope my badly damaged mind can sustain itself long enough to see these treatments be carried out.

        It sounds like you, Aaron and Nat are all doing better these days. That’s great to hear. I know all 3 of you have been through your own hell, so I’m really happy for each of you.

        As for the financial burden, while it sucks that you had to go into such deep figures, your health is of paramount importance and if it means spending that much to get your life back, then it’s not the worst investment imo. Some people leave that kind of money inside of a casino in a single night. Hopefully, with better health and the ability to work again, you can eventually dig your way out of this debt. Unfortunately, I too, for the first time in my life, have now gone into red digits. If I go through with FMT, as I hope to, it will set me back even further, much further in fact. But if there is a vastly positive outcome from it, I’d consider it money well spent. Like you said, sometimes there’s no choice but to go for it, especially if the alternative is a one-way ticket to the grave.

        The pain is all over my body. It’s this deep tissue/muscle pain that comes and goes. It’s extremely uncomfortable and sometimes feels like my body is on fire. It can be anywhere at anytime. It migrates and I’ve noticed it gets worse with exposure to the cold. The colder the environment, the worse the pain. The bones and joints also seem to be affected. My guess is that it’s inflammation. Too much oxidative stress. Lack of exercise isn’t helping things but the last time I was at the gym, I could hardly lift 10 lbs. Also there was lots of cracking and popping sounds so there’s definitely damage to connective tissue, the muscles themselves, among other things. Opioids are out of the question for me as I don’t want to give these criminals another penny, nor do I want to deal with more side effects. So I just try to ignore the pain as much as possible and carry on. I’m glad to hear that one of the I.V.s helped alleviate your back pain. That must of been a huge relief for you, especially if it was a permanent cure.

        Thanks for providing Allen’s e-mail. That 16×9 segment was a very good piece of journalism. Pretty much sums things up perfectly.

        Have you considered FMT? Or are you well enough to not need it? I recently got diagnosed with dysbiosis via an indican test. I’ve suspected that dysbiosis was a factor in all this since the beginning. It only took more than 5 years for a doctor to come to the conclusion that maybe, just maybe, there is digestive, gastric and intestinal damage post-antibiotic use. 8 years of schooling, 3-7 years of residency, you would think this would be something that would be investigated from the start. Yet, it took more than 5 years and dozens of visits to countless different doctors for one of them to order this test and pass on the diagnosis. Bravo Canadian Medical System. Bravo.

        Anyway, good to see your presence, L., and again, super happy that you’re doing better these days. Hopefully things stay this way.

        • L May 2, 2020 at 4:14 pm

          well I see that Jeff posted about a place that does the fecal transplant closer to you, so fingers crossed that will work out for you.

          I have the usual on and off gut issues, but nothing major. For the last 2.3 years I have been dealing with respiratory issues. It gets so bad at night that I can’t clear my lungs and I feel like I am suffocating. Happens during the day too. Ag.ain, I started thinking “Ok, Im ready to check out now,” esp those nights when it felt like someone kept putting a pillow over my mouth. The congestion is in my nose and throat as well, and I had two pretty awful sinus procedures. I have seen 12 doctors. I kept being told “you have asthma” and I kept saying “THIS ISN’T ASTHMA.” Every new treatment I’d be hopeful, and nothing . (and now here is another $20,000 down the tubes.” Well PRETTY sure it is mold sickness. I always suspected mold in my apartment. My landlord had a test done, and told me there was no mold issue, which is what they told her…but I went back to my old integrative pulmonologist ($350 a visit! He did spend 1 1/2 hours with me though.) He was the first one to say “I’d like to SEE the mold report.” Well, sure enough there is mold. Part of the problem is I am highly allergic to one of them, that might not bother someone else. The other is that one is normally not really toxic, but it was in such high amounts. So fingers crossed, this is actually it. I have been getting glutathione IVs to help detox the myco toxoins, and wearing an N95 mask as I move out of the studio. A lot of work since I have to wipe down or vacuum everything before I put it in my car. I have already made 4 trips, and given away a lot of stuff. And done about 1o loads of laundry. One more trip and I am done. Staying at my ex’s place and so far I think there is a bit of improvement, so, like I said “fingers crossed.” (And ten more IVS.) I do need to take psyllium husk because I don’t get enough fiber, and I need to get rid of this nasty stuff, but other than that, I think my gut is in fair shape.

        • Lukasz May 5, 2020 at 2:45 pm

          I’ve been in contact with this clinic but I’m going to stick with the European based one. They have better pricing and no extra charges unlike the Canadian clinic which is charging $1000 more and has additional costs added in beyond the price difference.

          Sorry to hear about the on and off gut issues and especially the respiratory issues. It sucks that you’ve had to deal with this for so long but hopefully you’ve discovered the culprit now (mold) and things improve as far as this congestion and respiratory issues are concerned, or better yet, resolve for good. I know you’ve been through the ringer over the years with all these darn issues so I truly hope you get some relief and soon!

    • Azz May 2, 2020 at 12:45 am Reply

      Sorry to hear about your situation, what are you battling with the most now? Physical or psychological symptoms? I’ve actually improved a lot physically, enough to start running again. I’m clocking around 6km most days of the week and I’m just hoping it can also help heal the brain since I read it can help with GABA damage, but I’m not if it’s improved all that much, still feel like I’ve got the worst hangover with a bad flu on most days of the week along with horrible depression. My wife says I’m getting better And I ask for her evaluation constantly. Hang in there, the road is long and hard but the prospect for a normal life again is too strong to give up on.

      • natdavauer May 2, 2020 at 6:44 am Reply

        Good to hear from you all. I’m the same. Chugging along at 60% bad days and 75% on good days. Had a couple setbacks though. One brought the head pressure back at full force and it’s been weeks getting back to base line. Another hit me with extreme fatigue and heart problems I haven’t seen at all for a year or more. Really hated the heart stuff and was really disappointed to feel it again. Strangely it was after I found a tick so I took antibiotics after that. VERY reluctant to do so but I had strep in January and it was my first abx in years and I felt much better overall. So I did take amoxicillin to prevent Lyme, which I might have had in the first place before getting Cipro, and two days later I’m feeling back to baseline. I swear there is serious dysbiosis going on and any normal pathogens that aren’t symptomatic now are because of a dysfunctional immune system. It makes me want to revisit FMT after these abx are over.
        Still have tons of sleep problems, screaming tinnitus and spells of bad Brian fog. Spells of visual confusion followed by sheets of floaters. Can get by in the day though without thinking I’m going to die which is good and bad. Good to be moving in with life, but bad in that it’s a shit way to live. But since your are living nobody knows you’re sick or really cares about all the chronic issues (which if I was normal and healthy, I’d be running to the Dr for each of these.) Instead you live with it all day, every day because it’s not even that bad compared to the past years. God forbid anyone gets Corona virus.
        Hang in there everyone. For me the sun makes a huge difference in how I feel daily. So more sun is good.

        • Lukasz May 2, 2020 at 5:39 pm

          Hey Nat,

          Good to see you again and very happy to hear that you’re doing better these days.

          What do you think brought on the head pressure? What about the extreme fatigue and heart problems? Do you think it was the tick that caused these symptoms to manifest or issues stemming from your original poisoning? I too have these issues and they are worrisome to say the least, especially the heart palpitations which I thought were behind me for good. I’m trying to figure out what has brought it back.

          Refresh my memory if you don’t mind. How many sessions of FMT did you do again? Was it 5 or the full 10?

          Sorry to hear about the lingering symptoms. Do you have dreams and/or nightmares with abrupt/too early wake-up? The morning anxiety is brutal upon waking up and the lack of deep sleep isn’t helping either. There is likely a major problem with hormone production including melatonin. This is causing us to drift during sleep rather than be immersed in deep sleep like a healthy individual would be.

          My mom, who took cancer meds years ago, has also been enduring strange dreams and nightmares for years. She says they began after she began cancer treatment. Ciprofloxacin was once being used as a chemotherapy drug before they rebranded it as an antibiotic. How a single pharmaceutical can cause this much damage and for this long, that is something that is incomprehensible to me.

        • natdavauer May 3, 2020 at 8:02 pm

          I went to Taymount UK. I did the 10 day course. One per day.
          But then I took a few more back with me and did them in the following weeks. Saw a substantial improvement 3 months later and that faded away. I wanted to get back to where I was when I felt it slipping away so I ordered 20 more from Taymount. My wife went and picked them up because shipping is a problem. So in all I’ve done at least 35

          Things like Cdiff can be take care of in 1-5 treatments. But the dysbiosis across the whole body is more complicated. And it’s important to remember it’s not just the gut. The human microbiome is the symbiotic bacteria, fungus and viruses that live all over the body. The organs, the eyes, the skin, sinuses, mouth and even brain. When something like Cipro destroys all bacteria in the body it’s not just your gut. It can cause lasting dysbiosis in all of these areas. 100 thousand years developing the symbiotic relationships with these organisms and they’re wiped out in an instant. Very hard to just put back. Probiotics just don’t work in this extensive of dysbiosis. I remember for a fact the feelings of the mucosal layers in my sinuses being complexly gone. My stool had absolutely zero smell. I had no boogers for a year or more. Ears were totally hollow. I think there is immediate neurotoxic damage to the nerves and also GABA damage and collagen damage but there’s lasting dysbiosis that affects all organs in so many ways.

          Anyway.. It’s not an exact science and there is some risk involved with FMT. The idea is just to try and replace all of those parts of the microbiome by taking healthy stool with trillions of organisms whether you know what they are or not and hope they reboot the microbiome of the sick person. Taymount has a wealth of experience if not hard scientific expertise. Knowing exactly how it’s helping is less important then being intimately familiar with the types of unknown chronic illnesses and having done 1000s of FMTs and witnessed the outcomes.

          There’s no guarantee of cure and it’s going to be expensive. But.. there’s less risk and a better chance of cure. A DIY FMT will be cheaper (or free) but will come with some serious risks and because you’re not an expert at processing the stool, much less effective. I first did two with my daughter’s stool (she wasn’t even aware) but only because I knew everything about her life and medical history. Still a risk of pathogens but a lot less than an adult you don’t have 100% history of.

          One thing that’s great is that you won’t get any confused faces or disbelief from Taymount. People like us are what they see all the time and they 100% believe and know that antibiotics can leave a person destroyed in a million ways even those normal Drs say all tests are normal. They will support you and do their best to help you. You get what you pay for and yes it costs a lot, but you get some pretty great care and a procedure that’s pretty far out and most would balk at the idea of even considering it.

          I’m considering doing more. I got strep this jan and took amoxacillin. I felt better than baseline immediately after. I recently got bit by a tick and felt super bad afterwards. Like reverting to my sickness 4 years ago. Worried about Lyme, I took amox again and again, in a few days feel better than average. There is still dysbiosis I think. I’ve heard of people doing FMT for years until they get better.

          There’s more to it of course and any holistic dr. would say that you have to think of the whole body. Diet, activity, lifestyle etc. And hardest to believe but I know is a huge pice of recovery is mindset. Mindfulness and hope and gratitude. It can create a positive feedback loop that literally encourages all the things to move toward healing. It’s clearly shown that even the microbiome in the gut changes composition depending on your mood. I think this is some of the mysteries link in something like Dynamic Neural Retraining. I thought it sounded pretty BS at first but now I believe it. I plan to do it because I’ve seen too many times at people’s mindset can start a positive feedback loop that leads to healing. In the same way despair and hopelessness can lead to sickness. Not being preachy here. I’ve been there. Absoutle despair. And I’m not all rainbows. I struggle to find happiness and hope but I do believe it is part of the answer so I try constantly to commit to that.

          As far as sleep it’s not great. It’s not nearly as bad as it was at the beginning. I can count on falling asleep which I’m so grateful for. The sleep is poor and many days I wake up feeling drunk. My recovery looks exactly like the Flox Report recovery timeline for severe reaction. I’m at the 4 year mark almost and it says insomnia is a problem indefinitely. As it seems tinnitus is. I’m still far from recovered but I’m far from what I was. I’m around 70% I’d say. I’d highly recommend Taymount to anyone but understand the cost is tough. I’m in around $100K on this whole thing. But it’s the time lost and true horrors I’ve seen that are the worst part. All I can say is that everyone just keeps trying to move forward. Do whatever you can to keep believing in recovery. Keep the hope and find things that inspire hope.

        • Lukasz May 5, 2020 at 3:41 pm

          Thanks for sharing your experience with Taymount UK and for the detailed outlook of being floxed.

          There is a lot of hope in your reply, but I’m also experiencing some fear on a personal level because I get the impression that much of this may actually be permanent. The fact that insomnia and tinnitus may be with me for the rest of my life, well, this itself brings me to the lowest pits of despair. Are you certain this is the case? Aren’t there people who have recovered completely from insomnia and tinnitus? I’m hoping this Flox Report is wrong and that I fully recover from both symptoms because they are hell on their own. I need to believe that all of these symptoms can be wiped out at some point, otherwise, it feels pretty damn hopeless. I appreciate your honesty Nat, I really do, you seem very well educated on the subject, but damn, I truly hope none of this is permanent, else, I want out of this misery.

          On a side note, it’s absolutely criminal that individuals such as ourselves have to endure these kinds of financial losses. I mean, $100K, how does a person pay that off in their lifetime?! These pharmaceutical and medical mafia members need to be held 100% responsible for these atrocious crimes and pay off the victims medical bills.

          These are crimes against humanity. No wonder worldwide there are 800,000 cases of suicide per year!

        • natdavauer May 5, 2020 at 4:06 pm

          I did finish my course of amoxicillin and have some fmt implants from taymount that are still in the freezer. I’m going to do those over the next few days and see what happens. They are over a year old which means they art at there most effective but I don’t think dangerous. I’ll let you know how it goes.

          I’m prepared to accept permanent tinnitus and sleep problems if need be. I still actively strive for a 100% recovery but have to acknowledge that might not happen. Many things are better and I constantly remind myself to be grateful for the things that are better now rather than dwell on the things that might not get better. I know some people with other permanent illnesses and if they can accept those things, I can accept tinnitus. I’d encourage you to actively think of the items that no longer affect you anymore and say out loud how grateful you are that they don’t. Again, 100% no preaching. I fundamentally understand everyone’s suffering and despair. I just always encourage hope to cause that positive feedback loop for healing.

          So ironically for me I started a business before this all happened. Before the business I was in poverty my whole life and not all that unhappy with it. But the business took off and I made more money than I ever had in the past. Not tons but a lot compared to my prior life. The irony is a year-and-a-half after the business this happened. Luckily I had made money but unluckily I haven’t really been able to enjoy the money because it’s all been spent on battling this illness. Had I not had the business running though, I would have had zero money to spend on this. So again, I constantly think how grateful I am that happened before this happened. But what sucks for the American health-care system is that I’ve rung up a million in tests and scans that have been paid for by insurance companies. I’m paying outrageous premiums but I’m ringing up outrageously expensive scans left and right. Just insane to think of the money spent dealing with stuff that could be easily prevented by just restricting a cheap drug more.

          But in the end it is what it is. I can’t go back in time and what’s happened has happened. Things are better for me now than they were 3 years ago so when it’s all said and done I’m moving forward and I’m not getting worse. It’s a trajectory I’m grateful to be on and will continue to be grateful for even if it never gets me back to where I was. I’ve identified with Buddhism more and more as this goes on and recommend it for anyone to help focus on the present.

        • Lukasz May 6, 2020 at 10:13 am

          I respect your outlook and agree that it’s beneficial to view life in a positive manner, but I also have to acknowledge that my state of health is extremely poor and that viewing my situation in a more positive light is next to impossible. I mean, I’m so sick that I barely feel my existence on this planet. I wish I could count my blessings but there’s very little to be grateful for at the moment except perhaps for this upcoming treatment. For that, I’m grateful. Glad you’re able to view things in a more positive light though. This implies that your mental state is gaining strength, something that’s impossible for me at the moment, but hopefully the treatment will lift this dark cloud.

          That’s quite the story re: your business. Strange how life can unfold, isn’t it? I often try to make sense of things, but then I remind myself that none of this can be made sense of. It’s just really bizarre. I’m sorry that you were not able to enjoy the money that came your way from this business startup and instead had to invest it into your health. I hope that if/when you recover, you’ll re-gain some of this money and enjoy life again. But you’re right it’s a blessing that you were able to use your earnings to improve your health via FMT and other means.

          Good to hear that your health is stable at the moment. Unfortunately, the opposite is true for me. I’m getting sicker with each passing day and that’s why it’s really hard for me to see the light at the end of the tunnel. I just hope I survive to see this treatment through. As it stands, I can barely proceed with the planning process. It doesn’t help to feel dizzy and confused all the time.

          I’ve always had some kind of connection to Buddhism. Even though I’m a Catholic at heart, Buddhism has always fascinated me. There’s something incredibly peaceful about it. In the end, for me at least, all religions connect back to the same source so the way I see it, it’s no problem to feel a connection to more than one religion. Like everyone else, I just want peace and an end to this suffering. If no end, then at least a state that is suitable for living. As it stands now, this is not a suitable state for living. Just being completely honest here. I truly hope that this changes by early next month.

      • Lukasz May 2, 2020 at 3:38 pm Reply

        Aaron,

        Not sure if your question is directed at me or L but if you’re asking me, the issues that I’m battling with the most now are cognitive decline (i.e. trouble with reading, reading comprehension), confusion, agitation/irritability, depression/anxiety, physical pain and sleep issues such as falling asleep, abrupt/too early wake-up accompanied by early morning nightmares/dreams. These are my worst symptoms, presently. A full list of all my symptoms can be found further down. So as you can see, it’s a combination of psychological and physical pain.

        Awesome to hear that you’ve improved physically and are now running for 6km at a time. That’s a massive step in the right direction as 6km is a long way. And to do it most days of the week is even more impressive. Good on you, mate. I feel your pain re: the worst hangover / bad flu comment. That’s how I feel pretty much 24/7/365. Outside observations such as those of your wife are important for people like us. My family also does this. They can sense me quite well these days and know when I’m feeling brutal or somewhat better.

        I asked L above and I’ll ask you the same question. Have you considered FMT? I’ve recently been diagnosed with dysbiosis and I’ve been turning my attention towards FMT to try and restore the microbiome which is likely causing 90-95% of my issues. Perhaps the same holds true for you. It’s not cheap, by any means, but I’m willing to go into debt if it means getting my life back on some level. Taymount (U.K.) is the most reputable one out there. I believe this is the clinic natdavauer used for his FMT treatments. They’ve been conducting FMTs since 2009 thereby they have plenty of experience. They also have several partner clinics scattered around the world but none that are close to Australia. The options are England, Slovakia, Canada and the Bahamas. I’ll leave some links below to several past FMT recipients. Reading their story, you’ll find it may resonate with you.

        You may see some negative reaction online about Taymount and FMT in general. I’d take it with a grain of salt as it’s likely medical and pharmaceutical puppets who are against this method of treatment, for obvious reasons, and are writing these negative comments and articles to sway people away from this treatment. Anyway, there is a plethora of information out there about the benefits of FMT and how it actually works.

        Taymount Clinic
        https://taymount.com/

        • Lukasz May 2, 2020 at 4:04 pm

          Here’s a couple of FMT recipients:

          They were NOT paid by Taymount.

          Bill Burley
          http://billburley.com/health/fmt.html

          Paul E. Wanvig
          https://www.paulwanvig.com/recovered-from-chronic-disease-with-stool/

          Worth checking out the one-on-one interview with Dr. Glenn Taylor, PhD.

        • Azz May 2, 2020 at 9:51 pm

          I would be very interested to try FMT but the price factor along with the fact I live in Tassie which would require me to fly to Melbourne leaves me unable to do it. Did you see the recent story about the quack who was poisoned? He made a complete recovery within a day by using stem cell therapy. I hear you on the nightmares, the worse they seems to be a good indicator on how the day in general will pan out, last night I dreamt of getting stabbed and fighting a giant (strange). I’m convinced it’s from GABA receptor damage, perhaps taking benzodiazepines is the answer..Nat knows more about that. I’m giving it 8 years to get better before trying.

        • Lukasz May 5, 2020 at 4:30 pm

          I hear you. I’m back and forth as to whether I’m going to go through with it because of the price tag, but I think in the end I probably will because I just can’t handle living like this anymore. I need relief from this pain and suffering. I’m hoping Dr. Ghalili is able to resolve many of my issues but to be honest, I’m not holding my breath since I’ve been promised similar things by doctors in the past. But if he’s able to bring me back a long way, I’ll consider it time and money well spent. I’ll let you know how it goes either way.

          The nightmares/strange dreams are a real pain. I’ve had so many since all this began that I’m shocked beyond belief when I don’t have one. Like you said, it paves the way for the day. That’s one messed up nightmare you had there. I’ve had similar ones but not quite like that. Many morbid ones but some strange ones sprinkled in like the one about me riding a massive flying dog (looked like Falkor from The Neverending Story) through the air. I guess it applies well since this mess feels like it’s never going to end.

          Careful with benzos, mate. Search “benzo brains” and “benzo brain damage” on YouTube.

        • Lukasz May 5, 2020 at 4:59 pm

          Also, check out this trailer for “As Prescribed”. It’s to do with benzos:

          “At this point, it’s almost a point of pride, if I kill myself, those motherfuckers who poisoned me win.”

          “I was a good patient and I paid the ultimate price.”

          I could really relate to these people. They’re pretty much going through a similar battle as we are.

        • Lukasz May 6, 2020 at 6:52 pm

          This Is Life with Lisa Ling – The Benzo Crisis

    • Jeff May 2, 2020 at 1:09 pm Reply

      Btw Luckasz. You’re in Canada? Me too. Taymount has a fmt clinic on Vancouver island in Duncan BC so you wouldn’t have to fly to the uk. I looked into it and it’s 7k so I just can’t swing it but it’s always in the back of my mind.

      • Lukasz May 2, 2020 at 5:58 pm Reply

        Hey Jeff,

        The Canadian clinic seems to be charging about $950 more over the other locations. I’ve contacted all of them in the past, including recently, and the ones in Europe are charging $7,000 (when converted to CDN $) while I’ve been quoted $7950.00 by the Canadian location. They claim this is a discount from their original price of $8950.00.

        It is a hefty price tag to pay, but at this point in time, it’s the difference between life and death for me.

        • Jeff May 2, 2020 at 6:12 pm

          Hey Lukasz,

          Wow, everything is such a cash grab. I asked for a quote months back and I swear she said $7,000 CDN at the time so they’ve upped it since then. I can’t figure out why they have to charge such an insane amount to have someone else’s crap inserted into our bodies. It’s robbery and a major red flag for me. Taymount here also told me I’d benefit from hyperbaric oxygen chamber sessions, which I did half a dozen of months back at $80 per session and it did absolutely zero for me. If fmt turned out the same I’d be out almost 8K and still suffering! But I hear you, we’re in a vulnerable state and that’s when the vultures start to circle. I’ve been robbed by two naturopaths as well who said they “guaranteed” their protocols would heal me and I’m no better for it. Just out a few more thousand dollars. This world is so sick and corrupt, who can a dying man trust? I like you am pushed to the door. I’m only 16 months in but absolutely cannot bare the symptoms any longer. It’s constant torture. All I have going now is my bloodwork going to Armin labs and (If I test positive for lyme) a lyme specialist who claims to know how to bring a person back from this living misery. As far as mainstream healthcare goes, it’s a total list cause in this country, as you know. I pray for you, all the others and myself that by some miracle we get released from this and get our once normal happy healthy lives back.

        • L May 2, 2020 at 10:45 pm

          I know it’s a lot of money, but honestly, it sound reasonable to me, especially if it works. Not a lot of places are willing/able to do it. Like I said, I’ve spent around $60,000. So that’s a bargain! You have to figure in all their overhead, and training, and compared to the obscene prices that allopaths charge for many things, it doesn’t seem unreasonable.

        • Jeff May 3, 2020 at 11:26 am

          I guess it’s just not affordable to me and it makes me bitter because wether I can or can’t afford a treatment shouldn’t be the difference between life or death or suffering and not suffering. It feels cruel and hopeless for me. But I guess I should have figured out by now, that’s the kind of world we live in. Hope it works for you and turns things around. I really do.

        • L May 3, 2020 at 12:16 pm

          Oh, I’m with you, Jeff! Everyone should have healthcare as a right. And REAL healthcare, not this pharma nightmare that passes as healthcare. I pay $350 a visit now, not covered by insurance for my office visits. I don’t have it. I charge it. And I think it is high. (My other integrative doctor also does not take insurance and charges $175/visit…but he has a receptionist—that’s it. The doctor that charges $350 has four nurses and two front office people he has to pay, plus all the other overhead.) I wish it was less but I totally get they no longer want to deal with insurance companies…and instead of being whisked in and out like I’m in some kind of factory, he takes the time he needs. I mentioned last visit was 1 1/2 hours. (Most attorneys charge several hundred an hour!) So, I’d rather get REAL health care rather than go to some insurance- covered MD —like the one who gave me cipro. And after the Cipro devastated me, TWELVE allopaths threw me under the bus. No answers. “couldn’t be the cipro.” “You’re delusional.” etc. I wasted time and copays.

          The person who saved my life (I was gasping for air, unable to walk on my own, could barely see, lost 1/4 of body weight, in excruciating pain and asphyxiated by the entire world) was a naturopath. If not for him I would not be here. I could not live another week in the state I was in. He started me on IVs, told me he had treated other floxies and I was going to be alright. (He also thought I was twenty years older than I was…and I have always looked young for my age, but that’s how messed up I was.) The IVs were expensive. But with NDs and many integrative doctors the costs go beyond regular overhead. They are always in danger of being shut down by “the powers that be,” that don’t recognize anything that is not big pharma/fda approved, or effects their bottom line. They are risk-takers, and truly risking everything they have put into their careers, so I don’t fault them the high prices. (of course there are always the gougers out there.) This ND was a true healer. The day I called, barely able to get the words out because of the breathing, told me to come in that day even thought he was booked. I did, and when I left around 5:30 there were still a few more in the waiting room waiting to see him.

          So yes Jeff, I so completely agree that we all should be getting TRUE healthcare and not have to worry about losing our savings and everything else. I just understand why those flying under the radar have to charge as much as they do.

        • Lukasz May 3, 2020 at 2:53 pm

          Jeff,

          As someone who’s been milked for thousands of dollars by many doctors, specialists and medical personnel, I can completely attest to what you’re saying. While I’m also certainly to blame for taking the bait on these treatments, therapies and supplements, I know that I’m choosing to go down these paths for a reason, and that reason is to reverse what is now a 5 and a half year plight. I’m glad there exists potential avenues out of this mess, but like you, I completely disagree with the prices being charged for these services. It should NOT cost anywhere near what many of these establishments are charging. It’s clearly price gouging and the targets are society’s most vulnerable, meaning, people like us. Just like you, I’ve gone through with various treatments and therapies, some of which did nothing, while others have made matters much worse. I too did hyperbaric oxygen therapy (HBOT), 50 sessions worth at $200 bucks a pop, and I can’t say that it did anything for me. I still felt like hell after all these sessions. In addition to HBOT, I did various IVs all of which I briefly talked about on my YouTube channel, and they too yielded no results and may have even made me worse, though I suspect it was the 10-pass ozone therapy that did the most damage with its damn blood thinners being injected into my bloodstream. I now wonder just how much of the suffering I’m going through is related to the drug Heparin (blood thinner) that was used during the 10-pass ozone. Either way, these 3 interventions did not yield results and left me with thousands of dollars in debt, which is still on-going. If I go through with FMT, then the debt will only rise, but again, at this point, there is little choice left.

          It’s very odd that the Canadian clinic quoted you $7000 CAD, while quoting me close to $8000 CAD, and that’s with this supposed discount that ends on December 31st. As I mentioned previously, I have contacted them twice now, once quite a while back and once recently, and both times the price quoted to me was the same, meaning $7950.00. I’ve opted to fly to Europe and have the treatment there as I have a deep distrust for all medical establishments here, not to mention PTSD as well stemming from all that’s happened to me. I was suppose to fly out on May 1st and start FMT tomorrow. Due to the whole coronavirus situation, these plans fell through and are currently on hold. I’m still hoping to undergo this treatment, but I really have no idea how beneficial it’ll be. I’m hoping for a miracle but first and foremost, I need to keep myself alive long enough to get on the flight. Seems like an easy task but I’m in very rough shape and just getting out of bed is a mission and a half. Having said that, I can totally understand your hesitation to go through with it as the price is off-putting and there are no guarantees for results. If / when I go through with it, I’ll be sure to post an update.

          As for the whole corrupt system, I totally agree and fully relate. I’ve visited quite a few naturopaths myself and they too were unable to help me in any way. They did take a lot of my money though! I now view them in a similar light as all other doctors and that includes integrative doctors who, like naturopaths, are out to capitalize on vulnerable people. I want to believe that there is some good medical professionals in this world but from my experience, I’ve yet to find one. Most of them are out of make as much $ as they possibly can so that they can live comfortably. I’ve been to the schools where they train these people to become doctors and felt sick to my stomach there. I could see the smugness on their faces, the arrogance in their voices and the brainwashing was evident as well once I got into specifics with them. I hope to Higher Powers that I can avoid these people for the rest of my life as they have done enough damage in my life. Be it conventional docs, naturopathic docs or integrative docs, they all aim to suck people dry of their hard-earned money. We have to become our own doctors if we aim to live long, healthy lives. If we put our trust in them, we will surely be going to our graves early.

          Jeff, my heart breaks for you buddy. I hope that we both see the day where we are no longer in agony and as you said, able to enjoy life again. I’ve prayed a lot in the past. I no longer pray because I feel God is not responding to my requests, however, I still strongly believe that recovery is entirely possible for all of us who are suffering. Even if the Universe isn’t able to deliver freedom from this pain just yet, I believe it will soon.

          Sorry for the novel.
          Best wishes to you.

        • Jeff May 3, 2020 at 3:08 pm

          I’m with you there. I’m not sure how you’ve managed to make it 5.5 years fighting this. That takes a ton of courage perseverance and strength. At 16 months in, I’m ready to pull out all the stops or end this train wreck on my own. Taymount would mean a loan for me and everyone in my family thinks it’s a scam so have retracted offers. That leaves me with home cooked fmt and this lyme dr. Beyond that, if no progress, I’ll be taking the high trail into the hills and saying arrivaderci. I can’t bare this constant torture and suffering any longer. Sucks, as I love my kids so much and would love to be here to watch them grow but it just may not be in the cards.

        • Lukasz May 5, 2020 at 6:29 pm

          Honestly, I don’t even know myself. I guess I’m just holding onto hope all this time and haven’t had the balls to take myself out. I’m afraid of failing my suicide attempt and getting myself into a worse situation than I’m already in. God knows, that’s happened to quite a few people. I’ve contacted different agencies for assistance in dying but these MOFOs discriminate and only allow certain people to die with the assistance of lethal IV drugs. I don’t fit their criteria because I don’t have a terminal illness, so I’m left to suffer. I could go on a LONG discussion about that and what I really think of Bill C-14 but I’ll spare you and everyone the rant. I’ll just say this, it’s a joke that some people can end their life that way, while others, who are suffering just the same or far more pain, are unable to go out that way.

          Thanks for the kind words, Jeff, but I don’t see it that way. Like I said, I’m just too chickenshit to carry out what should have been carried out 5 and half years ago.

          lol. Home cooked FMT. I had a good chuckle when I read this and began to visualize human crap being prepared like a meal. I believe Nat above mentioned going the DIY route with his daughter’s stool. Interestingly enough, there was a youtube comment I saw a while back from a man who downed feces from his grandson when he was only an infant and recovered from a long-term illness. He did that for 2 consecutive days and rid himself of his years long disease. This is well before FMT went commercial so he didn’t have a choice for clinical treatment but in his case, it worked. I, personally, wouldn’t try it since there’s many impurities in unprocessed stool but since it was stool from an infant in his family, it worked wonders for him. It’s a shame private healthcare is so out of reach for so many people.

          I feel absolutely gutted for you and wish there was something I could do to help ease your pain, but as you know, I’m in the same boat and on the edge of life myself. My hope is that I make it to June and witness a miracle from Dr. Ghalili but that’s asking a lot, so I’m going in with low expectations. If he does heal me though, you will be the first to know. I hope you can continue to be around for yourself and your family but I’m also under no illusions as to how difficult it is to get through each day. I hope your pain and sufferings eases, I really do.

  20. Lukasz May 2, 2020 at 11:12 am Reply

    CURRENT SYMPTOMS AS OF MAY 2, 2020:

    Malabsorption, weight loss, nausea, stomach pain, abdominal pain, cognitive decline, confusion, depression, anxiety, eye floaters, ringing in ears, vibration in ears, muscle spasms, body tremors, muscle/joint/bone pain, heat/cold intolerance, food(s)/chemical intolerances, heart palpitations.

    • Lukasz May 2, 2020 at 11:14 am Reply

      Are you guys experiencing similar symptoms or have most of these resolved for you?

      • Jeff May 2, 2020 at 12:38 pm Reply

        I always had great skin. Was oily and healthy, looked ten yrs younger than I was. Since this, i look like I look like I’m 30 yrs older than I am. My skin is dry and wrinkly with white and brown spots. My muscles have wasted and the skin hangs on my arms like an old man. The tinnitus too has gained speed. On my left side it sounds like a dental drill drilling into my brain. Is always louder than anything else and hurts with pressure. Yet nothing shows in my ct scans or mri and I was referred to a neuropsychiatrist. He told me that my illness surpasses the understanding of modern medical science and all I can do is accept the pain and remember to breath. Anyhow yeah, I have the UBC research in July and we’ll see what comes out of the Armin labs tests. It’s so hard to carry on

        • L May 2, 2020 at 3:45 pm

          of course the horrible physical effects I had were terrifying effecting breathing, vision, smell (it hurt to smell even a potato, it was so strong) Torn menisucus, huge weight drop. BUT it really pisses me off what happened to my skin. I was I great shape. Now my skin is all wrinkly and crepey. Even my forearms. I am embarrassed to wear short or short sleeves anymore. Between my knee and thigh I look like a Sharpei dog. My stomach was flat and smooth and now it’s all wrinkly too. All this for a UTI.

        • Lukasz May 3, 2020 at 4:36 pm

          Jeff / L.

          I think a lot of people on Floxie Hope can relate to this, including myself. My appearance has changed by a huge margin. I try not to look in the mirror as I get instantly pissed about the changes to my face and body. Like you guys, I used to be fit and had no issues with my skin, very few wrinkles, and enough muscle mass for my weight. How things have changed since. Skin issues like the ones you described. White and brown spots on my face, chest and shoulders, which I never had before. Skin has wrinkled on the face, stomach and other areas. Muscle atrophy galore. I was always a thinner build but now I’m a walking skeleton. But the biggest change has been with my teeth. I used to have really good teeth. Now they’re a mess. The drugs ate through the enamel and I fear that soon I’ll have no teeth at all. Body and face has aged tenfold, or make that twenty or thirtyfold. Sucks and only adds to the overall misery.

          Jeff, that’s quite the statement from your neuropsychiatrist. Very helpful, indeed. As if accepting pain and remembering to breath will make all your pain and suffering disappear. I’m willing to bet you had to wait many months to hear these words of wisdom?

        • L May 3, 2020 at 5:07 pm

          yeah, it’s just all the really crappy icing on the whole abominable cake. I was skeletal for a while. Pants that normally fit nicely were literally down below my hips. It took over a year but I did gain the weight back. Sadly the skin did not follow.

          So sorry about the teeth. I ended up switching to an holistic DDS so I didn’t get yet more toxic stuff via my mouth. He took out all my mercury fillings, which can really be an issue when you are trying to detox. In fact, some detoxes recommend you NOT do them until you rid the body of the mercury. This DDS is a bit more expensive than my old one, but not by much, and I would not go back to regular dentistry at this point. (I went back to my old DDS to pick up some records, and mentioned the cipro, and she laughed and said “oh, I use it in my practice.” Now this is an ordinarily very nice woman whom I had NO issues with, but when she said that and looked her right in the eye, and with dead seriousness said ” this is not funny. It is a nightmare. You need to do some research, and you need to STOP using fluoroquinolones.” I got my stuff and walked out.

          The gold standard is someone who is Huggins-trained. You may want to find one, especially if you have any amalgam fillings. Here is the form to find one. https://form.jotform.com/71532518318152

        • Lukasz May 5, 2020 at 6:59 pm

          I had and continue to have the clothing issue as well. It was quite brutal watching all the weight on my body melt away. I couldn’t believe what was happening. I went from being a size 32 on the waist, to 29 or 30 max. On the shirt front, I went from being a medium size all my life, to being a small size. Collagen and muscle was eaten alive and if anything, I’ve only been able to regain 5-10 pounds since all this began. I must of lost between 20 to 25 lbs at least. When I look back at my old photos, I can barely recognize myself today.

          And I’m most certainly pissed off about my teeth. They were strong, healthy and white and now they’re anything but. This of course affects my self-esteem and makes me hesitant to smile. Not that there’s anything left to smile about. : |

          Glad you let that dentist have it, L. We need more people like you, who aren’t afraid to stand up to these ignorant and arrogant doctors and dentists. So many of them think their shit don’t stink. All this blood money will catch up to them.

      • Jeff May 2, 2020 at 7:39 pm Reply

        I have to apologize Lukasz, I don’t want to discourage you from going ahead with fmt. It could very well be the answer to turn this around toward healing and life again. I just wish it wasn’t so expensive and yes, I’m apprehensive on getting scammed or it not being effective. But your life, all of our lives are worth pulling out all the stops to save.

        • Lukasz May 3, 2020 at 5:54 pm

          No need to be apologize, Jeff. My mind was already made up and I was booked with one of the European clinics before coronavirus struck down my plans. The airline cancelled my flights and the country itself shut its border to non-nationals so I have no choice but to wait it out. I contemplated going to the Vancouver Island clinic as they advised me that they hope to resume FMT treatments at the end of the month, but again, my deep distrust for all things medical in this country makes me want to wait until the European clinics re-open. Hopefully it won’t be long.

          I do hope it’s the answer I’ve been searching for. Then again, I also thought HBOT, IVs and 10-pass ozone would be the answer. I’m so badly damaged that FMT may not be enough to overturn it all. Or perhaps I’m wrong and it’s enough to overturn it all. Only one way to find out.

          Another clinic I contacted in the past was Regenerative Medicine LA, which is the clinic Dr. Mark Ghalili runs. Have you heard of him? There’s lots of info out there about him. At first I was a little skeptical, but more and more I’m starting to feel like he might be the real deal when it comes to fixing this mess. Last time I contacted his office, many months ago, it was about $10,000 USD to clean up the mess caused by antibiotics. Like FMT though, you have to factor in the flight, hotel, food, transport, etc. So it will certainly add up in the end.

          Dr. Mark Ghalili, DO – His website:
          https://regenerativemedicinela.com/

          Lots of positive reviews from injured and disabled people on Google. I don’t know if he and his clinic are the solution, but again, it’s another avenue that can be pursued for those of us on the edge of life.

        • Jeff May 3, 2020 at 6:06 pm

          I don’t blame you for not trusting anything medical in Canada. I’m tapped out on it myself. That being said, I’m also very sceptical of this lyme dr and the Armin labs tests as far as legitimacy. After a guy gets nothing but burned at every turn it’s hard to believe something else will be different. I haven’t heard of that clinic no, and unfortunately financially would not be an option. It’s sad to be at the edge of life but the great unknown is starting to look better all the time for me. If it wasn’t for my kids I’d already be gone. I fight for them but, it’s starting to feel like a lost cause. I’m just getting worse and worse and honestly can’t endure this torture much longer. Something will give soon. I hope for a healthy life ahead but it may be a long lost dream at this point, I have to be realistic.

        • L May 3, 2020 at 8:49 pm

          I actually spoke with DR G on the phone early after he started doing this. I think he is the real deal since he was himself floxed. My only concern was that his damage appeared to be primarily tendon-related, so I was not sure he was aware at the time how all encompassing the damage can be. I am not sure what he offers. I will tell you of someone that I have heard only raves about (and I am guessing it is very expensive, because he does stems) but I consistently hear wonderful things about Dr Ron Hansen who joined in on a site called stem cell recovery for fluoroquinolone toxicity on FB. Maybe check this out. Like I said, it’s probably expensive…but as my treatment spending mounted to tens of thousands, I thought “if it’s this or death, then I’ll choose debt for now…” https://orthocureclinic.com/meet-drhanson/

        • Lukasz May 5, 2020 at 7:41 pm

          L,

          I was thinking the same. It appeared that most of his injuries were tendon-related whereas, so many of us have head-to-toe injuries with neurological/brain injuries.

          I’ve watched many of the video testimonials on his website. Some of those people were really badly injured, both physically and mentally, and he was able to restore many of them to health. I hope to High Heavens that he can do the same with me.

          This Dr. Ron Hansen looks to be very experienced. Been doing stem cell therapy since 2007, so one of the pioneers I think. Dr. Ghalili’s assistants mentioned stem therapy but the cost was up there. I forgot the amount but it was either 10 or 20K.

          I agree with you. I’ve started to look at it in a very similar way as you. Meaning this. Life of pain or life of debt? While both are possible, I’m hoping that when the dust settles, I’m left with “only” a life of debt. Of course, I wish it was neither, but life has presented me with this set of circumstances and I have to accept that for what it is.

          All that I can do now is hope that I have made the right decision to go down to L.A.

        • L May 5, 2020 at 9:17 pm

          well I hope some of what you are doing is the stem cell, because I truly believe that is the game changer for most of these people. Like the woman I quoted. Minnesota is closer to you, yes? Is there a reason you chose Dr. G over Dr Hansen? And the success stories you read about, did they include stems? I think it’s great you are going to one or the other, but I want you to get the most bang for your buck.

        • Lukasz May 6, 2020 at 10:36 am

          The reason for choosing Dr. Ghalili is because he has extensive experience treating toxicity and is regarded as one of the best in the field of regenerative and functional medicine. If there’s anyone out there that has the insights and know-how of what it takes to regenerate a wrecked body, I think it’s got to be him. It’s a leap of faith, to be sure, but as I said previously, it’s all or nothing at this point for me.

          As for the recovery stories, I’m not sure if stem cells were a part of it. That’s something I’ll have to look into. I just wish the price of stem cells wasn’t so ridiculously high. If I had the funds, I may have considered going ahead with them, but as it stands, I can’t afford them. The last of my money, make that the bank’s money, will be spent on FMT.

    • Jeff May 2, 2020 at 12:17 pm Reply

      Hey Lukasz, aside from eye floaters I get everything you are experiencing. I have had terrible vision loss and my visual field looks yellow tinged and distorted. My worst symptom being the chronic constant burning on my skin and spinal cord, I’m having lyme tests done at Armin labs in Germany as I did pick a tick off my arm in Oct. 2018.m, even though I was told by an internist that Lyme is a myth, unbelievable how ignorant and arrogant the medical system is. I know the though that the Biaxin played a huge role as everything got terrible in the following months after taking it. I hear you so much on how you feel, I have everything to live for, my boy is only 2 and my daughter 8. I want to live but I don’t want to live another second like this. Of course all my mainstream tests are clear. No inflammation nothing wrong with my blood count or urine tests. If I make it to the end of July, I’ve been accepted into research studies at UBC. Searching for answers but struggling so much just to make it through every day.

      • Lukasz May 3, 2020 at 7:35 pm Reply

        Jeff, I’m really sorry to hear about all the pain and suffering you’re going through. The symptoms from these drugs are so complex and surreal that you’d never possibly believe this was real, unless it happened to you. It took my family quite a long time to be convinced that I wasn’t making this up because they just couldn’t believe that pharmaceuticals could do this much damage. Now they’re fully convinced after having a front row seat to my suffering for the past 5 and a half years.

        I myself got tested for Lyme disease in the past because I wanted to rule it out. Turns out I didn’t have it. I have no idea whether Lyme disease is a myth or not, but it wouldn’t surprise me if it was since Big Pharma is excellent at making up new diseases for the sake of maximum profits. They love to disguise pharmaceutical damage and toxicity with all kinds of made up words. That’s how you hide dirty deeds from the public.

        Did you take Clarithromycin? How about Metronidazole? Both of these are as deadly and damaging as Ciprofloxacin. I got hit with all 3 and that’s probably why I’m so wrecked all these years later. As for medical testing, I wouldn’t rely on it. Almost every floxed person on this website reports normal results, yet they are practically paralyzed by these drugs. Their tests are a joke and are such that you won’t have a basis for suing them. Interesting enough though, my RBC (red blood cell) counts and WBC (white blood cells) counts have consistently come back low which indicates low immune system response. Also, these doctors were failing to notify me of this. I had observed it on my own after obtaining copies from them. Having low RBC and WBC counts is alarming because it opens you up to all kinds of issues including cancer so that’s something I’d like to know about, yet the doctors were failing to notify me of this. Criminal matters as this is proof that the antibiotics destroyed my immune system. Have you checked your RBC and WBC counts? Even if they’re low normal, it’s a sign your immune system is compromised.

        Have you had a urine indican test ordered? If not, I’d highly advise you to do so. It will paint a better picture of your microbiome situation. I found out through this test that I have dysbiosis, which I suspected for a long time. This is the only test that has ever indicated anything, but again, it’s because they know they poisoned us and can’t put their fingerprints on the evidence. But yeah, this test should be a good indicator as to whether FMT should be considered.

        Hang in there, Jeff and I’ll try to do the same.

        • Jeff May 3, 2020 at 8:08 pm

          Hey Lukasz,

          I took 8 doses of oral clarithromyacin. Then afterwards because of depression anxiety and insomnia, Ativan, citalopram zoplicone and amiltrytaline. I guess I’m the big sucker for continually taking the bait. I’ve been on no meds for a long time now but I’m ruined. I was always a busy active fit guy and now I’m stuck in the couch, can’t go into sunlight and I burn in the mot excruciating pain round the clock, 24/7. I also don’t sleep well, have permanent anxiety and tinnitus that is severe and piercing. My blood cell counts have been good but I’ve had other tests red flagged many times. Cortisol is always high but they say it’s high but not a concern as it couldn’t cause any symptoms. I also had a titre test come back red flagged at 1:80. The neuropsych dr said it could be demyelination, ordered those tests and they came back clean. They like to make me feel like I’m nuts and couldn’t possibly be experiencing what I claim to be. I pushed my gp to refer me to UBC for research testing but that’s not until the end of June. I have not had a urine info can test done but will push for it. I had mentioned about seven dozen time’s that this is most definitely gut macrobiome related but my gp and neuropsych shitheads disagree and shut me down. My gp won’t refer me to a complex disease specialist, a rheumatologist or another neurologist. So…I’m going to have to report them to the college of physicians and surgeons. And yeah, they deserve to be dragged into the carpet but I know they’re untouchable and so do they. They poison us, make it look like we’re crazy then do it again and again and again. To little kids even, they are soulless vampires who feed off of destroying lives to line their fat wallets. My wife is an RN and leans toward believing what the system says is true which has made this even harder and destroyed our relationship. I’m so done with it all. I fight through it each day for my kids but I’m losing and honestly just want peace. I wish you all the best man. You’re a true warrior to have made it this far. I respect your endurance and perseverance immensely.

        • Lukasz May 5, 2020 at 9:48 pm

          OH MAN! I was afraid it would be Clarithromycin when you posted about Biaxin which is the generic name. That’s the same drug they got me with, except mine came with another poisonous antibiotic, Metronidazole, and not even 6 months later, f-ing Cipro.

          Then they put you on a whole bunch of benzos which are just as bad as the freaking antibiotics. Jesus! What the hell is wrong with these people?! They are clearly out to injure, disable and kill with these kinds of actions! Worst of all they know exactly what they’re doing. They can’t play stupid because reports of severe injuries, disabilities and deaths have been coming in by the boatload since the 1980s. They are clearly doing this for the BLOOD MONEY!

          No, Jeff, you’re not to blame here. You simply did what these people advised you to do. You put your trust in them, like we all did, and you paid the price for it like we all did. These people are to blame, not you. You are correct, they are soulless vampires and they will feel God’s wrath when their time on this planet is up. Be assured of that.

          I hear you. I also suffer from sun sensitivity and I burn very easily when exposed to sunlight. Prior to the drugs, I had no such issues. And I too have burning pain from head to toe. Have you heard of Adam Maier-Clayton, the young man from Windsor, Ontario who was advocating for assisted dying for those with complex illnesses? He experienced frequent bouts of burning pain and many other debilitating symptoms. He too was put on many different drugs by incompetent doctors. Unfortunately, he succumbed to suicide in April of 2017. On his YouTube channel, he spoke many a times about his condition. If you read through the comments on his videos, you will see that there are MANY out there who are experiencing the very same hell he did.

          Adam was an incredibly intelligent young man who knew a lot about his condition, unfortunately like so many of us, unable to stop it from impacting/destroying his life. He was very aware of the complexities surrounding these doctor-induced illnesses, but trapped in his sick body. Good guy, unfortunate fate.

          Here’s his channel:
          https://www.youtube.com/channel/UClksfs-BjzgP_9uCagJ49lA/videos

          Re: high cortisol levels. I don’t know why their downplaying that. High cortisol levels can cause inflammation to spike in the body. Inflammation and oxidative stress can cause all kinds of symptoms including depression, anxiety, physical pain and much more. Just like they did with me, they’re downplaying all your concerns because its their opinion that counts and not ours. They like to feel/be in control. Heaven forbid you try to overrule them.

          I’m no doctor (nor do I want to be), but I’d say you’re right about the state of your gut. As L. had said in one of her earlier posts, the majority of conditions today have been linked to damaged guts (microbiomes). The environment there is super sensitive and even minor changes can cause havoc, nevermind, wiping out the entire system. Also, let’s not forget what Nat mentioned earlier about the micro flora being not only based in the gut, but, pretty much all over. This is very true. A body is like a clock. If a single component goes down inside the clock, it can affect the entire functionality. You then have to fix the broken part. But if multiple components are down, fixing one broken part won’t do the trick. All the other broken components have to be fixed for the clock to be operational again. Most of us are dealing with multiple systems down so it’s a huge undertaking to repair each broken part/section of the body. And then there’s the brain which is a whole different matter and as complex as the Universe itself.

          Anyway Jeff, I truly hope you’ll still be around for the UBC research study. Hopefully they will have some answers for you by means of testing or otherwise. I wish for you good health and better days ahead. Let’s try to beat this monster.

    • L May 2, 2020 at 3:39 pm Reply

      That’s a lot to deal with. I had so many floaters it was like trying to look through gauze for the first couple years. If I looked at a wall or floor it would literally be COVERED in black dots and little swirly things…hundreds of them. I am now down to a few. I don’t know if it helped or not but I did NAC eye drops for years. They are supposed to be for cataracts but I read online that they can help with floaters too. I did it religiously, twice a day for the first year then once a day. I continue to use the when I remember. Can-C is one brand. There are a couple others.

      AS for the tinnitus , mine is still there. Some days it’s just annoying and others it is deafening. I wish someone would find something that works for that. I also am still chemically senstivie, but nothing like before, where the entire world asphyxiated me. Just nightmarish and beyond words. I could not have continued to live that way had it not dissipated. Again, I think it was thanks to the mix of IVs I was getting. There are high doses of Bs in the Myers and they are good for nerve issues, as is phosphatidylcholine, which I got a LOT of. If you can’t get IVs I would suggest trying to get liposomal supplements. They get where they need to go without being degraded by the digestive acids.

      I am so sorry you cannot do the fecal transplant right now. Sure seems like if your gut got normalized some of the other stuff would go away. They have now connected pretty much every disease to gut issues. I have not watched the video I am linking here, but it’s by Dr Perlmutter, who wrote Grain Brain. He is a neurologist who talks a lot about a healthy gut. (Also dr Dale Bredesen wrote The End of Altzheimers” He has had great success treating people with just diet and lifestyle changes. Again, the gut is key to so many issues.) https://www.bing.com/videos/search?q=dr+perlmutter+fixing+a+damaged+gut&docid=607992765481814676&mid=57B6A34F1F6C4BC430E157B6A34F1F6C4BC430E1&view=detail&FORM=VIRE

      • Lukasz May 6, 2020 at 3:28 pm Reply

        You’re right about the gut being a major factor in all this. I know for certain that my gut is contributing to at least 75% of my poor health. Maybe even as high as 95%. In fact, I need to address it ASAP, as any day may be my last now. I feel absolutely God awful of late and need to end this nightmare once and for all. Fuck going to hell. It will be a slice of paradise compared to my living hell.

        • L May 6, 2020 at 4:21 pm

          I am so sorry Lukasz. When did you say your Dr G appointment is?

        • Lukasz May 6, 2020 at 8:44 pm

          I apologize for my language, L. I’m just very sick and tired of this daily nightmare. My appointment is on June 3rd.

        • L May 6, 2020 at 9:13 pm

          I didn’t even notice the language. No apology necessary. (You should hear me!). I was just on dr Ghalil,s sure and in the section on flq toxicity he mention IVs and other protocols prior to cutting edge cell infusion. (I read that as stem cell). Now I got 80 percent better from IVs but I am just concerned that he mention that (the stems) as part of the treatment but you are not getting any. As long as you are traveling so far and spending so much, would you be able to borrow or charge more to do some stems. I know you have been through so much and I only want the best for you. A go fund me perhaps?

        • Lukasz May 6, 2020 at 9:44 pm

          That’s a good point you make. I’ve been thinking more and more about that since you mentioned it the other day. Perhaps it would be wise to do them as well. The thing is, I did the math and if I was to do the stem cell therapy as well, I wouldn’t have enough $ for the FMT treatment in Europe. That treatment is suppose to run me $7K, plus cost of airline ticket, hotel, transport and food on top. So $10K to $15K is my estimate. My credit card will be able to cover Dr. Ghalili’s 5 day treatment but the stem cell therapy costing I think $10K, wouldn’t fit on the card. Unless, out of sheer goodwill they would reduce the price, but what are the chance of that happening? Slim to none, probably. As for the FMT, I would be using my line of credit for that, which would barely cover it. I’ve been to the bank recently to obtain higher credit but I was denied. They cited low income for the denied credit. I wasn’t even asking for much. Just an extra $5K on my credit card and $6K on line of credit. But the fact that I get peanuts from the gov’t on a monthly basis was enough for them to decline my request. So stem cells may not be in the cards unfortunately.

        • L Livingston May 6, 2020 at 10:52 pm

          Well g F if you talk to dr g’s office regarding the issue that you are getting the fecal transplant for? Perhaps that issue might be fixable with his treatment? Worth asking.

          Sent from my iPhone

          >

        • Lukasz May 6, 2020 at 9:48 pm

          As for GoFundMe, you may recall I tried that option a while back. I received $100. I can’t see it being any different the 2nd time around.

        • L May 6, 2020 at 10:56 pm

          No I didn’t remember that. Sorry. I don’t have much but I’d put in something! I didn’t get as much as I had hoped but it covered me for a while. I didn’t even want to do one. I was kind of embarrassed (shouldn’t have been). But a “pushy” kind-hearted friend set one up and the kept telling people to contribute. So I didn’t really have anything to do with it.

        • Lukasz May 6, 2020 at 9:52 pm

          Plus I feel bad about asking strangers for money, especially people on this site who are already struggling financially as it is. Outside of this network, I don’t know many people.

        • L May 6, 2020 at 10:59 pm

          Just saw this after I posted. Yeah, I felt funny too which is why it wouldn’t have gotten posted had a friend not taken it upon herself.

    • Azz May 2, 2020 at 9:35 pm Reply

      I’ve got the same symptoms except for weight loss, infact I’ve put on 11kg since this tragedy began. Have you felt like you’ve stabilised or gotten worse?

      • Lukasz May 6, 2020 at 3:43 pm Reply

        I’ve definitely been getting worse over the last few months. I feel like I’m losing myself, my mind and my identity. I don’t want to hurt anyone in this world so I have to take myself out ASAP. I will then allow my soul to rest in my favourite countries without this body weighing me down. Hopefully, it won’t be a painful exit.

  21. Jeff May 3, 2020 at 11:58 am Reply

    Hey Azz,

    Just thought I should reply on the benzo note. I took ativan .5 for a year after Biaxin poisoning. In the beginning it took the edge off of the anxiety but really helped with nothing else. I’d say it knocked off maybe 10% of the anxiety for the first three months. After that I noticed that it wasn’t helping at all so my dr said to take it three times per day. Once I started doing that I began having seizures and all symptoms got far worse. So I tapered back to one per day and then to half of .5 per day, then a 1/4 tab and then stopped completely. I don’t get many gains on this journey of torture but…since stopping Ativan completely, I have not had a single seizure. I still struggle immensely with insomnia so my dr says why not try Librium (another benzo). That’s not happening! After stopping the Ativan my anxiety is almost as bad at times as it was in the start. We’re all different and some swear by certain meds but I know for me I won’t touch another single pharma as long as I live…which feels at this point won’t be much longer anyhow. Thanks to conventional medicine my life is winding down at the ripe old age of 47

    • Azz May 4, 2020 at 6:11 am Reply

      Thanks for the heads up, I have enough to deal with already without adding seizures to the list. I was hoping to use it as a last resort if I didn’t improve, as things stand after three years it’s hard to imagine I will. It’s especially hard having children in this time so I feel your pain, I remember when my 3 month old boy was born I was basically emotionless, it sucks to have life’s special moments and happiness cruelly stolen from life while the soulless dr which gave me this poison lives on happily without a care in the world. I struggle to come to terms with this injustice on a daily basis. Have you seen any improvement over time?

  22. Jeff May 3, 2020 at 1:17 pm Reply

    Am wondering what part of Canada you’re in? And if by chance we’re in the same area, what naturopath you saw. I’m on Vancouver island and haven’t been able to find a naturopath who can help me. I just started with Dr. Chan np in Richmond as he deals with autoimmune issues and chronic Lyme. Trying to uncover if those are playing a role. So yeah, the last of my money is tied up in the lyme tests going to Armin in Germany and naturopath costs. As far as the fmt goes I guess I’ll try my hand at home using my sons waste. At this point I don’t have much left to lose so may as well give it a go

    • L May 3, 2020 at 2:26 pm Reply

      I always say that if you can’t find someone who has treated floxies, your next best bet is someone who has treated Lyme…especially if they do IVs. My treatments were very similar to those of the Lyme patients being treated with both my ND and my integrative MD who is a lyme specialist.

    • Lukasz May 6, 2020 at 9:09 pm Reply

      Jeff,

      I’m in Toronto. Are you in Victoria? Good luck with Dr. Chan. Hope he can be of assistance to you. Have you tried FMT with your son’s stool as of yet?

  23. Jeff May 3, 2020 at 3:30 pm Reply

    I wish you all the best too Lukasz. We all deserve freedom from this agony and to be happy and healthy again.

    • Lukasz May 6, 2020 at 9:13 pm Reply

      Thanks, Jeff. I couldn’t agree more. I hope we can all return to good health soon.

  24. Jeff May 3, 2020 at 4:58 pm Reply

    It’s a living misery that I have little patience remaining with tbh. I waited eight months after referral to be seen by that neuropsych asshole. I’ve now cut all ties with him after his latest statement “ your condition surpasses the understanding of modern medical science, all you can do is hope for the best”. I’m pretty sure I could have got better reassurance from anyone on the street but it takes a wall full of diplomas to drop a bomb like that on someone. What a piece of inhuman waste. He also refused to fill out any reqs to check for DNA or mitochondrial damage deeming it “unnecessary for something that is irreparable…even if they did find damage there is nothing that could be done to fix it”. He’s a true inspiration of enlightenment that’s for sure! And CEO of the FND (false) Hope society. I feel guilty for bringing kids into this world, I know that much. I hope they fare better than their dad did. I truly do!

    • L May 3, 2020 at 5:13 pm Reply

      OMG! That is just so beyond unacceptable. I said this before, some of the WORST responses that floxies seem to have gotten, myself included, have been in the neurology feld. (and that this idiot was also “psych,” well he should loose his license over comments like that.) It was the neurologist I went to (against my better judgment…I was already getting help from an ND, but went on this referral from a rheumatologist I had seen) who put in my notes that I was “delusional” and “had pseudo medical knowledge.” The latter was because I had the audacity to tell what is on the damn label! And he sat there, not two feet from a computer and could have confirmed everything I told him! This guy didn’t even know that cipro can cause permanent nerve damage!!!

  25. Jeff May 3, 2020 at 5:55 pm Reply

    Pseudo medical knowledge, Unbelievable! These guys must think they’re living immortal gods, immune to having something of the like ever happening to themselves and that their egotistical ignorance transcends the requirement of actually knowing anything of use or value. I too was good months back by a different psych dr that I had delusional ideas. She said it’s not possible that the Biaxin did this to me and that I was creating and living a false reality. I said, so my tinnitus and chronic burning pain are just my imagination? She responds that the mind is powerful that way, it’s possible that you are hallucinating your pain. I had no history whatsoever of mental or physical illness prior to ingesting Biaxin. They will defend their criminal enterprise from tip to tail. They are the lowest forms of human filth.

    • Jeff May 3, 2020 at 6:26 pm Reply

      I too was seen months back* not sure how “good” snuck in there

    • L May 3, 2020 at 8:51 pm Reply

      That’s what so disturbing. First you are tortured, mentally and physically, and then, instead of getting the compassion and understanding you so desperately need, you’re told you crazy.

  26. Jeff May 4, 2020 at 11:29 am Reply

    Yeah man. I highly recommend steering clear of benzos. The seizures were driven by a brain in a chemical bath type feeling which I still have to some level and the aftermath with withdrawal sets you right back to square one. I’m sorry about you feeling emotionless about your son, I can relate for sure. I used to be a fun active and enthuthiastic dad and now I’m pretty much useless to everyone, including myself. I’ve made improvements with containing anxiety and panic and sometimes sleep a little better h than months ago. Aside from that I’m in the worst excruciating constant chronic pain I’ve ever been in in my life, the tinnitus is worse and my reaction to food is severe as even a glass of water will cause a reaction. I continue to stop weight and am now at 65 lbs lost. I’m sure the dr who prescribed it is living large and continuing to dole this stuff out like candy at a parade. I hope he suffers too for what he does at some point. There has to be justice. I feel as this is probably the last year of my life tbh. Don’t know how I could possibly go much further. Is sad as I’m not ready to go but I can’t afford private treatments and mainstream healthcare is a torture chamber. Have you improved? If so in what ways and what helped?

    • Azz May 5, 2020 at 9:41 pm Reply

      If I look back 3 years ago I’m better then where I was but it hasn’t come far, I had a day almost without dizziness yesterday and it filled me with much needed hope again. Today it’s back to the usual nightmare. I’ve tried almost everything to get better glutathione, vitamin C and many others..if anything each thing I tried has made me worse not better. Time has helped but it’s so incredibly slow it’s hard to notice and the smallest thing can set me back to square one which is truly frustrating. How long have you been sick for? Have you seen any improvement?

  27. Lukasz May 5, 2020 at 9:21 am Reply

    Well, I took the bait again. 5 day treatment with Dr. Mark Ghalili of Regenerative Medicine LA begins on June 3rd. Either I’m really going to regret this decision OR it will be the best decision of my life. Time will tell.

    • natdavauer May 5, 2020 at 10:36 am Reply

      That’s huge. Best of luck and we look forward to your updates on the treatment. I’ve talked to him on the phone and considered booking treatment with him many times.

      • Lukasz May 5, 2020 at 1:58 pm Reply

        Thanks. Let’s see what happens with this. I’m hoping for the best but at the same time, preparing for the worst. I’ll let you guys know how it went post-treatment.

        • Azz May 5, 2020 at 9:47 pm

          It’s certainly a lot to be excited about, but why is it so darn expensive. He supposedly whent through this nightmare but is willing to charge exorbitant prices to others suffering like he did..I hope it’s not yet another scam to take advantage of the vulnerable. I don’t want to be a jackarse just realistic. I prey that it works for you and if so I’ll be booking a flight myself.

        • Lukasz May 5, 2020 at 10:43 pm

          If I could feel emotion, I’d probably be excited for this medical trip but like you during your son’s birth (congratulations to you and your wife btw) , I’m quite emotionless all the time. It’s like these scumbags have turned us into zombies. Maybe some excitement will materialize on the day I leave, but for now, I’m quite hollow about it all.

          I’m not sure why it’s so expensive, but if I was to guess, probably as you said, taking advantage of the chronically ill market. Just like FMT and HBOT before it, the prices at this clinic feel incredibly inflated. I mean $10K USD for 5 days of treatment with no guarantee of improvement? And $2K USD for each additional day?

          Having said that, I figure that if I’m going to go down with this ship, I might as well try the last lifelines available to me which are this treatment and FMT. Then I can die knowing that I tried EVERYTHING humanly possible to reverse this situation. It’s a shame that all my life savings were exhausted and I can have to turn to bank loans.

          You make a good point though. Why is he charging these kinds of prices knowing how devastating this can be? I guess only he and his staff know the answer to that.

          Thanks for the prayers, Aaron. I’ll be sure to let you and the others know if it works.

    • L May 5, 2020 at 2:21 pm Reply

      I had mentioned that I had seen a lot of positive reviews for Dr Hansen in Minnesota (I think) so I went back to the site to see if anyone posted about seeing Dr Ghalil (the stem cell site for floxies on FB.) I did find someone, and this was her response regarding Dr G. (I think its ok to post here since I’m not mentioning any names) “Yes I had a great experience with him in May 2018. …There are many options some people just do treatments, some do stem cells, some do different combinations of both. I chose 2 weeks of treatments and stem cells. I think treatment plans are individualized to need and cost.” So, sounds promising! I suspect it’s the stems that are the real “fixer.” Are you doing stems?

      • Lukasz May 5, 2020 at 7:57 pm Reply

        No, I won’t be doing stem cell therapy. The cost was extremely high, I forgot the exact amount but it was either 10 or 20K, and seeing as my 5 day treatment is actually 10 days because they allow for an in-between day for rest and to see how the protocol is coming along, it’s pretty much a 2 week commitment. My treatments will be on Wed. and Fri. and then again on Mon. Wed. and Fri. of the following week. On the days that I won’t be having treatments, they would like me to use their light beds which are suppose to be healing the mitochondria. They also advised me that each additional day of treatment after the 5 days is up, would cost $2,000 USD. YIKES! So I opted for the 5 day treatment.

        • L May 5, 2020 at 9:19 pm

          oh shoot. sorry, just saw this after I posted.

  28. Lukasz May 5, 2020 at 11:06 pm Reply

    Alright folks, I’ll be offline for some time as I have a lot to do in the coming weeks before I head out to L.A. I sincerely hope that each of you will have an easier time with your daily struggles. Wishing you all nothing but the best. Take care for now.

    • Lukasz May 5, 2020 at 11:21 pm Reply

      Looks like I missed some replies above. I’ll get to them tomorrow. Time to lie in bed and suffer some more!

    • Azz May 6, 2020 at 4:15 am Reply

      Good luck! I wish you success, I’m looking forward to seeing how it goes for you

      • Lukasz May 6, 2020 at 10:10 pm Reply

        Thanks Aaron. Hope your health continues to improve in the meantime.

  29. Jeff May 7, 2020 at 4:30 pm Reply

    Hey to everyone, just leaving a message to say that I’ve really been struggling so hard to get through every day lately. I’m not trying to ignore or avoid anyone on here who I’ve been chatting with. I honestly just can’t keep up with regular life. The constant severe burning agony (And many others symptoms, tinnitus that’s louder than life, tightening of internal organs etc) that has become my life is pushing me to the brink of my coping abilities and beyond. I honestly can’t take it much longer. I want to live life more than anything but I can’t go on living like this if it doesn’t start receding. I was always an extremely strong person, physically and emotionally but this has reduced me to…I don’t even know what…a vessel of pain agony and suffering to the most extreme degree. I know others on here are suffering so much too. The people responsible for doing this to us must be held accountable. THEY MUST BE!!!!

    • L May 7, 2020 at 5:30 pm Reply

      I’m so sorry Jeff, and I so understand. My side effects head to toe were so nightmarish for the first year, I prayed for death everyday. It does get better but it takes time, a good diet, the right supplements and if you can scrape the money together, IVs or stems of other form of treatment.

      and more than anything I wish these bastards would be held accountable.

      • Jeff May 7, 2020 at 5:41 pm Reply

        It has to get better or I’m finding a way out. I’m 16 months in and not getting better. I’ve spent about $2500 on supplements on two naturopaths protocols and am no better for it, just poorer. The Np I’ve started with now is literally my last resort as far as money goes. If he can’t help I’m out. I eat nothing processed, organic poultry and veg, no wheat, no dairy, no sugar and all I get is torment and torture 24/7. I can’t go into the sun, barely sleep. It’s garbage and far from anything that could be called life.

        • L May 7, 2020 at 5:51 pm

          So sorry. I honestly didn’t start to feel near back to normal until 2 years out. Do you know if this naturopath has treated other floxies? Does he use IVs?

        • Jeff May 7, 2020 at 5:57 pm

          I couldn’t find any here that treat floxies. I did talk with one in the states who does a few times who gave me supplement advice, which didn’t help. The one I started with treats autoimmune conditions which I’m certain this has caused. He’s also looking for lyme and toxins. My blood has gone to Armin labs in Germany for analysis on a steep price tag, so waiting on those results. He did mention IVs but we’ll see what the outcome of these tests is if I don’t snap before then. My spinal cord and brain are always maxed out with pressure and feel like they’re stewing in sulphuric acid and my skin burns like a 3rd degree electrical burn at all times.

        • L May 7, 2020 at 8:25 pm

          Well the fact he is looking for lyme and toxins I think is promising. As I have mentioned elsewhere, one of my primary doctors during this is a lyme specialist.

    • Azz May 18, 2020 at 8:34 pm Reply

      Hi Jeff, how are you going lately? I recently read an article the “flox report”, which seems like a legitimate source, explaining that people even in the most severe of cases entirely recover from insomnia and anxiety/depression before a period of 5 years. I found this very encouraging, so I thought you should know.

      • Jeff May 18, 2020 at 8:50 pm Reply

        Hey Azz,

        Thanks, is good to know. Unfortunately my tolerance for this living agony won’t last anywhere near even another two months. The constant severe burning agony, head pressure, all symptoms driven higher by literally ANY food intake and extremely painful constant severe tinnitus will force my hand unless something breaks very soon. Now at 70 lbs weight loss and my gp says nothings wrong lol. I’m waiting for my Armin lyme results and a neuro dr is trying to get me admitted to UBC for a two week research program. Beyond that my wife has split with our kids and wants a divorce as she blames me and me alone for what I’m going through. At the edge of the precipice and pretty close to heading into the beyond. I’m also filling out the forms for MAID in hope that I can catch a break and nod out legally and peacefully should a miracle not come my way very very soon. Every day is akin to climbing mt Everest. I love my kids and want to live more than anything but simply can’t endure it anymore. Thanks for caring though, means a lot

        • L May 18, 2020 at 9:19 pm

          Oh Jeff it breaks my heart to read this, and I can surely identify. I prayed for death every day for more than a year, as I gasped for every breath, as it shut off as soon as I began to inhale. My vision had twilight zone side effects and everything in the world asphyxiated me. I lost 1/4 of my body weight in 3 weeks. A couple years + out, in spite of remaining side effects (including, at times, deafening tinnitus) I felt like I wanted to live again. Now, sadly for the last two plus years, I have had a different kind of breathing issue, where my lungs are so congested I can’t clear them and I feel like I am suffocating many nights. Turns out there was mold where I was living, and I left, but I am still plagued. I imagine my cipro-riddled body cannot deal with it like a normal person.

          I am so pissed off at your wife. On the one hand, it is difficult to understand this if you have not been through…but surely she can see how damaged you are, and how difficult this is. It really is too much to bear at times.

          I don’t know where you live, but I would put my energy into a good naturopath or integrative MD, esp one that does IV therapy.

          Please keep us posted, and hope you find some relief soon.

        • Azz May 20, 2020 at 2:42 am

          Hey Jeff, I know your pain, it wasn’t long ago that I felt exactly the same way..but you must tell yourself that what your going through now is the acute phase, it only gets better from here. 3 years out and I’m no longer surviving but living again, it’s been a hard slog but I believe I still have the chance to live again. I briefly separated from my wife twice during in the last 3 years but it all came ok in the end. One day soon you will look back and be amazed that you even managed to survive all of this. It takes an amazing amount of will and fortitude but you can do it. Hang in there and remember it will get better!

        • natdavauer May 20, 2020 at 6:30 am

          I also urge you to hang in there Jeff. I’ve been there with the head pressure especially. Many trips to the ER insisting I’m having a stroke. I thought for sure the pressure episodes would cause permanent brain damage. So far it doesn’t seem to be the case.

          Stress makes everything worse and it sounds like emotional stress is being heaped on with your marriage. I’m with you there too and I’m on the brink of divorce literally every other day. I have four kids and this causes a permanent situation of deep stress and anger at my wife. that almost surely impedes my ability to heal. I’ve been told that it’s all in my head and all I do is lay around on the couch for three years. Of course during this time even while laying around on the couch I’m still the soul income earner for the family and I’m the only one who gets up to feed the kids and get them ready for school. Even in the state I’m in four years. So frankly my wife is super lazy and not compassionate or caring and follows that up with gaslighting me for being floxed. I don’t see a future where I can ever respect and love her again. But still… I’ve been to where you are and it’s the bottom. Having lived at that bottom I know even divorce and the suffering I endure now is better then that time.
          Like Azz said, I’m not recovered but I am living at this point. every second of my day isn’t spent enduring. There is a low level of suffering in some way everyday but I can go about living a mostly normal life. You have to believe that I was absolutely where you’re at. Thinking about suicide every second of the day. even considered taking a anti psychosis prescription from my doctor allowing me to be “snowed out” so I wasn’t even aware of the suffering.

          I’ve discussed volume on here before and always warn everyone of the combination with FQs. But I do believe Gaba dysfunction it’s behind some of the head pressure stuff. If you’re faced with suicide or taking Valium, take the Valium. Just be aware that it kicks the can down the road and may eventually face you with just as big of a challenge when you have to stop using it. But it did save me on a few nights when I was at the bottom.

          Please hang in there. Lay in the dark and listen to audio books for a couple weeks. That helped as well.

      • Moki June 10, 2020 at 7:48 am Reply

        Hey Azz, Did you ever get back on TRT? I know before you were floxxed you said you were doing trt treatments and once you got floxxed you stopped…

        • Azz June 10, 2020 at 7:14 pm

          I did it periodically, however before I was poisoned I had stopped completely and was the happiest I’ve ever been, I considered using it again as a blood test showed my hormones were all over the place. Just desperate to find something that could possibly make me feel better, I haven’t tried it in years now. Too afraid it could make this illness worse.

  30. Jeff May 7, 2020 at 4:42 pm Reply

    Dr. Arend Andries Delport at Powell River General Hospital. That’s who prescribed me clarithromyacin when I had a lung infection in Dec. 2018. I vividly remember him walking in the room with it in his hand and saying “you’re a big strong guy right?” He was sizing me up because he knew it was dangerous yet gave no warning whatsoever. He looked concerned that he might miss his break and scurried off I hope you suffer 10X more than I have for 1000 lifetimes you rotten piece of inhuman filth. You took everything from me!

  31. Jeff May 7, 2020 at 8:47 pm Reply

    Agreed. He’s apparently one of the leading lyme experts in North America. I’m just worried that I have irreparable brain damage. I don’t feel like me since the brain zaps last March. My vision is shit and I constantly feel twitchy and anxious. I feel so disconnected from normal life. I was never an emotional person but now am dominated by emotional pain on top of the horrendous physical. The tinnitus is insanely loud on my left side and it hurts. Feels like a laser or dental drill drilling into my brain tissue. It’s all hard to describe. My minors and intellect are as sharp as ever but I feel cognitively altered in a very bad way. My MRI and CT scans were clear but they didn’t use contrast. The idiot neuro dr I saw said that I likely have macroscopic brain damage that is undetectable by modern technologies. The constant intracranial and spine pressure and I feel “chemically” different. Like an form of autoimmune brain disease or something. I don’t know, I want to believe that it’s something that will heal in time but living it doesn’t feel that way. The constant neurological burning over 90% of my body is so severe, my bones ache and crack like they never have and my internal organs feel indescribably tight and strangely asphyxiated. 60 lbs weight loss and dropping. All food causes pain flares no matter what it is, even drinking water causes pain. I’m just repeating myself as this misery trap makes me do. Sigh, it’s not a life. Barely an existence

    • Azz May 8, 2020 at 4:46 am Reply

      I know your pain, I thought it was only cipro that could cause such devastation. The quack who poisoned me prescribed it on the “assumption” that it was a bacterial sinus infection causing my headache which lasted for over a month..turns out it was simply allergies, but why the hell did he give me the most poisonous and powerful anti biotic there is. And all without even testing my sputum first! The unfortunate thing is, short of going to prison in this diseased state, there is no justice and I’ve tried everything, the courts, the therapeutic goods administration everything. The mental side effects and depression are horrendous, even worse then when my mother died or when I couldn’t get out of bed for months after I had a motorbike crash, it’s hard to believe things could ever be normal again but we must do just that or we open ourselves for more mental torture and I’ve got enough on my plate already. Keep up the good fight, your only early in. For those severely affected it can take up to 8 years to get better..that’s what I’m preying for.

      • Jeff May 8, 2020 at 9:57 am Reply

        Same. They didn’t test my spirits until after they Rxed the clarithromyacin which came back negative do anything. The mental and physical torture is beyond human comprehension. I’m simply and honestly not interested in putting in eight years on this. With my inability to barely eat almost anything, I’d be dead long before that anyhow as I’m slowly starving to death already with the tiny amounts of food I eat. Even with that I get tortured for everything that I swallow. If things don’t turn soon. I’m out. I love my kids more than anything but I’m useless to them like this and it’s certainly not healthy for them to witness what has been done to me and my continual decline.

        • Jeff May 8, 2020 at 9:58 am

          Sputum*

        • Azz May 8, 2020 at 11:00 pm

          I grapple with that myself, I feel sorry for my wife as I’m not the happy go lackey man that she married anymore. I see myself in Facebook images before and after this happened and the difference is night and day, you can see in my eyes all the torture I endure on a daily basis. I’ve become conscious of this and now wear sunglasses and avoid social situations as much as I can. I’m pretty much unemployed without any future prospects because I seemingly can never return to my former career. Can you explain what happens exactly when you eat? Do you get stomache pain? I’ve actually put on a lot of weight and my body looks strange. I’ve lost my athletic body shape, my neck has turned into a pencil, my shoulders have lost a lot of muscle and I have a fat tyre around my stomach. I had a lot of stomach pain for the last 3 years and without going too much into detail the food was mostly unprocessed, and it showed on the numerous blood tests I did with very low iron and B12. My vision is horrible as well but I dont have floaters, it’s often blurry and things like blinds move as if there’s a wind flowing between them. It feels as if I’m in a computer game and when I turn, my vision takes longer to keep up if that makes sense. All of it isn’t as bad as it was in the first 2 years, I really hope you can hang on as it will improve after a while. I’m really looking forward to seeing how Lukasz treatment goes. Sending good vibes your way!

        • natdavauer May 9, 2020 at 7:51 am

          Jeff,

          Sounds brutal. My guess is that your GABA situation is quite bad. Causes much of what you’re experiencing and takes a long time to heal. The good thing about GABA though is that it does heal. You rarely hear of someone who hasnt’ seen significant progress in a couple years.
          The 8 years of suffering thing could be true but it’s also just months for others. One big piece of advice is not to compare your timeline to others. You could be way better 8 months from now. I know you’re useless for your kids now (I know, I have 4) but I don’t think it’s worth saying you never want to be there for them ever again. You might spend a year or more getting better but your kids (and you) will be glad when you make it out the other side (and you will). My youngest has seen nothing but the sick me since they’ve been alive. Others can’t remember me normal and the oldest is forgetting probably. It’s brutal to know the course of my life changed after Cipro. I used to want to get back to “the way I was” and I think it takes some mourning to transition from believing it will all go away and you’ll be the old you, to embracing the fact you did survive but your life will be different. You are alive. You are alive and you will get better, those things are true. Write this time off if need be. Pretend you’re in jail or lost at sea. Just let it go. Focus on the shore on the other side. It might be a while but you will arrive there some day. You’ll be on the other side looking back.

    • L May 8, 2020 at 9:57 am Reply

      First, I am glad you did NOT get contrast. That stuff is so toxic. And it just helps the dr reading the tests see a bit better but not necessary. And I will tell you that MOST tests come back negative, because, as Dr Todd Plumb, himself a floxie, said “the damage is functional not structural.” I had SOOO many tests, all negative in spite of head to toe damage.

      MY vision was one of the top 3 nightmares. I had so many floaters over night I rushed to the eye dr thinking I had a detached retina. I did not; but as the weeks went on, I had more and more until I saw hundreds of them. I remember shuffling in to a Costco with a friend who was picking something up for me. (I was down to 90-some pounds at this point and could barely walk, but didn’t want to stay in the car.) There was this enormous white tile floor, and I looked down and it was covered with little black dots and grey swirls, as far as I could see. Same with the walls. I just stood there are cried. I started taking these NAC eye drops, religiously, twice a day for over a year and the floaters have mostly gone. But within a month of this nightmare I was diagnose with macular degeneration. And at one point (this was absolutely hellish) I was seeing different things out of each eye. Not double vision, but the right eye was seeing what was directly in front of it, and the left eye what was in front of that eye. My brain was not melding the two images together, something we do without thinking. Thankfully that resolved after about a month.

      My vision went from 20/20 in one eye and 20/30 in the other to 20/40 and 20/60. I was so depressed. BUT I am 5 years out and after my last exam, it was 20/30 and 20/40 so some of it came back. So yours will likely too.

      I too got the tinnitus, which sucks. I used to LOVE silence. Now there is none. It varies. Some days it is mildly annoying and other days almost deafening. I sure would like to find something to fix that.

      I would NOT listen to what the neuro says. Again, from my experience and that of others on this site, they are some of the most uninformed when it comes to flq toxicity. (and some of the most arrogant.)

      I know a floxie who had many of the similar pressure, weird head things you are experiencing and several years out she is much improved. The body is remarkably resilient, but it takes time to fight this scourge.

  32. Jeff May 7, 2020 at 8:51 pm Reply

    Memory* and intellect -correction

  33. Jeff May 10, 2020 at 1:24 pm Reply

    Thanks for the encouraging words Nat, I do appreciate it. Wish you all the best to in healing on this bizarre journey of pain and suffering. Hope the future brings love light good health and happiness to all of us

  34. adam May 11, 2020 at 3:28 am Reply

    Please try a stellate ganglion block, I know many who got their lives back. Please do so and try also the drug propranolol — you must use this drug and then remember the traumatic event that caused you’re symptoms. What I believe you are suffering from is physical symptoms induced by mental trauma obviously caused by the antibiotics as I have gone through the same Clarithromycin poisoning, I have gotten better, but nowhere near to the happy, confident and vigorous man I was before. I suffer from constant health anxiety and wont even go into the list of symptoms. Please look to above and practice thought direction, meaning you control you’re thoughts. Ie whenever you think or feel something negative. Think and feel of something positive.

    What you are doing is forcing you’re subconscious mind to change into a new state.

  35. Jeff May 21, 2020 at 5:26 pm Reply

    Hey Nat,
    I appreciate your encouragement and sharing your own struggles. Sorry to hear of your own marriage and family stress. It’s so hard with little kids yet they are what’s gotten me this far. My labs came back negative for Lyme but positive for chlamydia and mycoplasma pneumonia bacteria. This all started with a lung infection so wondering if the biaxin didn’t kill it but flushed it out into my brain and cns, plus poisoned me on top of that. Anyhow, if I continue to drop weight and am so adversely affected by food, will power won’t get me through years and years of this torture. I feel as though my nervous system is failing and that I’m in a severe disease process. I’m awaiting admission to a university research hospital. Whatever I’m up against is very serious and the symptom torture is extreme and unbearable. Every day is climbing Mt. Everest and now doing it totally alone being that my wife has left with our kids. She also intends to kick me out of this house and expects me to find financial independence and a place of my own. She’s an RN, yet thinks I’m responsible for my illness and that it’s all fabricated, she blames me 100%. Anyhow, it’s a total disaster that I’m simply not strong enough to endure. This is so much bigger than me and I’m sick of living in agony. If the research admission bit doesn’t happen soon, it leaves me with zero options. Even this new NP is just suggesting brain excercices and I’m sorry but this is far beyond that. I’m at the edge, want to live but am left with little to bind me to this world. I worry that if I don’t take care of it myself, I will continue to die in the most agonizing way possible or be confined to a psych unit. I’d rather leave with even a 1/4 gram of dignity.

    • L May 21, 2020 at 7:34 pm Reply

      Just wondering jeff, if mycotoxins are the issue, if you have tried glutathione IVs? (It is what I am doing to get rid of mycotoxins from mold sickness.)

  36. Jeff May 21, 2020 at 7:38 pm Reply

    I haven’t. Is it helping? Are there side effects? Is it something a NP does? How much dosage wise and how often? Not likely something done in conventional medicine?

    • L May 21, 2020 at 7:49 pm Reply

      sorry, read that quickly, and apparently they are not the same. What I have is fungal from mold sickness and yours is bacterial. Still I think perhaps there might be some kind of nutrient IV to help with that. Or some nebulized treatment. Do you have an ND or integrative MD that does IVs? Also some kind of nebulized treatment.

      • Jeff May 21, 2020 at 7:58 pm Reply

        I have an ND. No idea if he does or not. Just wants to suggest vagus nerve and limbic exercises these days. Anyhow I’m flat on cash so I’m pretty much spent all around. I have this research admission pending and beyond that I’m adrift. Anyhow thanks for trying to help

        • natdavauer May 22, 2020 at 6:17 am

          I had a major mold exposure which caused ringworm just before this all started. Then I had a test that was positive for Lyme from one doctor but negative from another. I did have a test that was positive for Q fever in ended up getting a call from the health department because it is such a rare disease.

          It’s completely common to hear these exact same threads in everyone’s story. in fact it’s pretty much the mo for chronic illness. If you read of the journey of dr. Bill Rawls online I think that’s what’s going on. All of these issues should not cause this much sickness. All of these microbes can be harbored in the human body with no symptoms. So it’s not that it’s a devastating infection it’s that our immune systems are broken and can’t deal with these things that may have been there before. It’s likely the antibiotics cause a dysbiosis so the balance is gone. Also that there’s nervous system damage from antibiotics and our immune system can’t signal to work properly. So the idea is that we need to rebuild the things that reboot the immune system and that in turn will get all the microbe issues under control.

          I a hundred percent agree it’s no way to live. Just promise you’ll try all the options before giving up. Make appointment with all the doctors. I did. I saw multiple versions of each specialist in every hospital in town. I saw a naturopaths I did weird remedies. I went to church. I prayed and I’m not at all religious. Again, Valium was a big deal even though I didn’t want to take it. I did fmt which was a big turnaround in weight gain and strength. even if the doctors can’t figure it out, having appointments on the books and looking forward to them is something that helped me at least move forward in time. And I do believe time is the biggest healer in this case.

        • Azz May 22, 2020 at 7:22 am

          For sure our immune systems were destroyed by this poison, you may remember me complaining about fungal infections up to 2 years ago now..I still have it under my arm pits. 2 months after I was poisoned I had the worst fever I’ve ever had in my life, I felt as if my throat was cut, I was vomiting and my eyes were glued together it was super bizarre. I must have been to at least 20 GPs over the years and it all came to null, treated with nothing but patronisation and condescending arrogance. I found it a total waste of time, the unfortunate thing is this battle is very lonely but there is hope on the other side of the tunnel. I also tested positive for mycobacteria in my lungs, (the most horrifying and deadly of its species), paid for two chest CT scans, only to be told (she’ll be right mate your young). I’ve stayed away from the whole rotten system since then and haven’t regretted it. I almost consider the last 3 years as me against them, I’ve taken whatever the bastards have thrown at me and improved despite it, hopefully I can some day get back to how I was, now that would be perfect revenge. I really get the impression they really couldn’t give a shit, they just want their precious blood money.

        • Azz May 22, 2020 at 9:06 pm

          Sorry Nat, I kinda reneged on what you wrote, I guess having appointments and looking forward to them does buy precious time.

  37. Jeff May 21, 2020 at 7:40 pm Reply

    I tested positive for mycoplasma. Is that and mycotoxins the same thing?

    • Azz June 14, 2020 at 1:17 am Reply

      Hey Jeff, how are things going lately?

      • Jeff June 14, 2020 at 9:06 am Reply

        Slowly dying in hospital. All blood and urine tests are good, brain MRI good. Awaiting lumbar puncture tomorrow. Been accepted to university research hospital so playing the waiting game for intake but honestly it’s too late for me. Approaching 80lbs weight loss. Severe reactions to food intake. Constant symptom torment. I just need it to end. I need peace.

        • Azz June 15, 2020 at 2:17 am

          My Brian MRI came back normal as well, I’m hoping this means it’s not permanently damaged. Just remember every symptom gets less with time and try to keep going, easier said then done I know.

        • Jeff June 15, 2020 at 8:08 am

          Biggest issue is eating anything is like dousing myself in gasoline and striking a match. Severe burning, head pressure tinnitus insomnia. Muscles and weight wasting away to a walking ribcage. Getting a lumbar puncture today. Hoping for some kind of answers. Seems like an extreme autoimmune condition would be my best guess and it never shows anything through bloodwork

      • Jeff June 19, 2020 at 4:21 pm Reply

        So hospital discharged me saying they have no idea what I’m fighting and gave me a requisition for a bone density scan in a couple weeks. The scan req states; investigations of mast cell activation syndrome, yet I’ve been told nothing towards this direction other than reading that. I’m waiting for bloodwork and csf analyzation results. Anyone here familiar with mast cell activation syndrome? Apparently can cause mast cell leukaemia and or cns issues.

        • natdavauer June 20, 2020 at 8:26 am

          Yes, MCAS is a common issue that overlaps with so much of this. You’ll see it’s like a Venn diagram of issues. Wish I knew the connection. But it’s likely w secondary to issue that occurs because other things are fundamentally wrong upstream.
          If you got an LP though, take it easy. I experienced a lot of issues after because the dura takes a long time to heal.

  38. Lukasz May 23, 2020 at 6:43 pm Reply

    Hey everyone,

    Just wanted to stop by and ask if any of you had seen the new YouTube channel devoted to pharmaceutical-induced injuries? It’s an interview-based platform and the duo running it are interviewing all kinds of people from various kinds of injury groups including antibiotic, SSRI, benzodiazepines (benzos), psychotropic, acne drugs, etc. Basically, any and all drugs which are poisoning us. If you haven’t checked it out yet, I suggest doing so as there is a plethora of useful information from people like us.

    Here’s the link to the channel if you wanted to check it out for yourself – Rx PillD:

    https://www.youtube.com/channel/UC2FCCzGU8gWCFrzS5CbjCoQ

    On a side note, my trip to L.A. and the Regenerative Medicine LA clinic is on hold until June 20th. The airline I booked with is screwing with me, robbing me of money I don’t have and is demolishing my plans for urgent treatment. As it stands, I’m now in the process of rebooking with a different airline as I’m determined to overcome these demons which are holding me back.

    Additionally, as of yesterday, I noticed a very disturbing new symptom. It’s my lower right leg. Something is very off with it. I have complete numbness in the lower portion of it. It feels like there is ants crawling there when I touch it, but again, I can’t feel much as it feels very numb to the touch. When I touch my other leg, in the same spot, it feels normal. Any ideas what this is?

    • Lukasz May 23, 2020 at 8:45 pm Reply

      Also, I just remembered another platform that really helped me in my early days of suffering. This platform can also be found on YouTube and is called “Mad in America: Open Paradigm Project”. It’s a series of personal stories, people that have been through similar experiences that we’re all going through, that really resonated with me at the time and still do to this day.

      Link is below. There’s quite a few of these videos. Mad in America: Open Paradigm Project:

      https://www.youtube.com/results?search_query=Mad+in+America+Open+Paradigm+Project

    • Azz May 23, 2020 at 10:54 pm Reply

      That’s sucks, I know you were really looking forward to that trip and I was looking forward to hearing the results from you. As for your leg, I regularly get that symptom in my hands, especially the right hand. Sometimes I even have trouble gripping things it’s so bad, but generally it’s only occasional. Do you ever get nerve pain in your teeth? My teeth look totally normal except the left side is almost always in constant pain latley.

      • Lukasz May 24, 2020 at 6:35 am Reply

        True, but it’s just another obstacle to overcome as far as I’m concerned. I’m hopeful that I can make the June 20th departure with a different airline. I continue to be in a dreadful state, so there’s no guarantee that I won’t expire before then. It would be a damn shame to lose the fight at this point. On the same topic, I can’t help but think that L. is right about stem cell therapy and not being able to have stem cell therapy might limit the results. I hope I’m wrong through and that I still see plenty of benefits without the stem cell therapy.

        I’ve got weakness in my limbs as well, including my hands, but this leg numbness is something different to that. I don’t know, something just feels very off there. Hoping it’s not vasculitis as I’ve had many muscle spasms there and just about everywhere else since this began. Hopefully, one of these muscle spasms didn’t block or rapture a blood vessel there. Then again, we all have so many different strange symptoms coming and going all the time that this could just be another symptom that’s here to add to the misery.

        How are you with sun exposure?! I spent time in the sun the other day and now I’ve got bad sun burn. I mean really bad sun burn. That’s another thing I’ve noticed. My tolerance towards being in the sun is diminished by ten fold. I tend to burn very fast whereas before all this, I could be in the sun and not burn so easily. It’s just another thing I’ve had to adapt to. Have you experienced this as well?

        On a slightly different topic, I recall you mentioning having a fungal infection under your armpit. I’ve got this same issue as well. The back of one of my armpits is always itchy and feels infected. It’s been like that for years now. I even smothered the area with manuka honey and garlic to try to kill off the bacteria there but it hasn’t resolved the issue. I always find myself scratching that area because it can get quite itchy. In general, my entire body feels itchy which leads me to believe that there is a systemic infection, obviously started by the antibiotics themselves as they killed off all the pro-life microorganisms.

        To answer your question re: the teeth, I’m not sure if it’s nerve pain but I get strange sensations there from time to time. I used to have strong, healthy teeth and now I’m ashamed to even smile because I can see the damage done to them by these drugs. Enamel has been mostly wiped out from my front teeth and it’s not from my brushing technique as I brush in a circular motion and don’t apply much force. It’s these drugs that compromised by teeth’s bone density and caused enamel erosion. But yeah, I’m sorry to hear that this is another issue you have to contend with. If it wasn’t for these medical cartels we wouldn’t be having this conversation. The whole system is in real need of being completely overhauled. These evil-doers who are doing so much harm to humanity need to be expelled from it ASAP because I’m still hearing and learning about people being harmed these days. It’s the year 2020 and people are still getting a prescription for disaster. All because they are putting some trust in their M.D. / G.P.

        White Coats = Wolves in sheep’s clothing.

        • Azz May 25, 2020 at 4:48 am

          Hey Lukasz, thanks for the lengthy reply. With every new weird thing that happens i’m entirely confident it’s due to being poisoned, if I ever become normal again I will never take it for granted.

          The borders between Canada and the US are closed am I right? I can’t help but think with your treatment plan it would be better to go all out, simply because how else in the world is it possible to promote the repair response of diseased, dysfunctional or injured tissue. I know it costs a fortune but you may get regretful later if it’s unsuccessful.

          With the fungal infection, it seems to be ringworm. Not itchy so much as just an eyesore to look at, at one point I had it all over my trunk but I can’t seem to shake this lasting infection. Out of curiosity, did you get the disability pension? Their making it very hard for me here, I appealed the first result only to get a review by phone (because of covid) and because I didn’t answer it was rejected again! I don’t answer my phone unless I know the caller because I’m tired of being hunted by debt collectors.

          I noticed for the first few years you had steady improvements, do you know why it seems you have gone backwards? Have you tried anything resulting in a bad reaction? I really hope your on the up soon.

        • Lukasz May 26, 2020 at 7:21 pm

          Aaron, isn’t it mind-boggling how many odd symptoms and various issues arise from these poisons? Even years later? It feels like these drugs are designed to cause more and more damage with each passing year. I guess that’s the progression of an untreated disease. You’re right though, pretty much every symptom and issue is connected to the original source. I too will never take my health for granted if / when recovery comes my way.

          Yes, they keep extending the border closure. It’s now extended to June 21st, I think. However, travelling for medical reasons is still permitted and has been since the beginning. The clinic I’ll be attending is providing me with a letter just in case I have issues at the border, but hopefully there won’t be one and I will be able to attend treatment as planned.

          Yes, you’re right. I’ve spoken to the clinic’s administrator once again about stem cell therapy. She advised me that Dr. Ghalili makes that call when he assesses the situation as a whole. Meaning, it’s too early to know if I even need it, but judging by my wasted muscles, limb numbness and countless other issues, it wouldn’t surprise me to find out that I’m a prime candidate for it. If I do end up going through with SCT, then FMT is out of the question since there won’t be any funds left for that therapy. I’ve been back and forth about which one I should choose, as both have their pros, but in the end, I think the decision will have to be made on the spot, meaning in L.A.

          You should see how many strange rashes and sores I’ve developed since this mess began. I have them behind my armpit, on my forearm, hand and feet. Quite a few of them. Like you said, it’s aesthetically displeasing, and some of mine tend to be itchy so I’m often times scratching them. It would be great if this treatment could eliminate them once and for all.

          Same outcome for me re: disability application. I got denied the first time, appealed their decision and got denied again. I’m now awaiting a date for a tribunal hearing which is essentially the final stage of the process. I’ve been waiting for a while now. With this coronavirus situation, the wait is going to be that much longer. All of this filling out of forms and back and forth between me and them, is really stressing me out and I don’t even feel like challenging their decision in court anymore as I know they’re going to deny me anyway. They view me as a healthy individual, which is an absolute lie. I’ve supplied them with plenty of evidence to date, but you know how these people work. They do everything in their power to keep you from receiving a higher amount. At the end of the day, it’s just another injustice that victims like us have to suffer through. I’m very sorry that they rejected you because of the missed call. Will you be able to do the phone interview again or visit them in-person once covid19 passes? Seems very unfair to reject someone just because they didn’t pick up the phone. Not only do we have the stress of our illness, but our finances too.

          I’m not sure why my health continues to decline. My guess is that my body is dealing with a systemic infection and because my immune system is completely wiped out, it has no way to defend itself. I strongly believe that a central infection exists. This is why it was so important for me to travel to Europe and undergo FMT. Without FMT, my immune system will always be too weak to guard itself against toxins, pathogens and oxidative stress. So it’s probably causing my body to be in a constant state of chronic illness. That and the damage from the abx which hasn’t been fully resolved. Making matters worse is the stress of the whole situation. Pretty sure having more chemicals placed into my already damaged body i.e. blood thinners, a couple years back, didn’t help either. I think that doctor messed me up even further to be honest.

          Anyway, it is, what it is. What’s the latest on your situation? Any new developments?

        • Azz May 28, 2020 at 4:29 am

          Hey Lukasz, things were going ok for the last month but last night took a turn for the worse, today was dreadful, you know how it goes. Hopefully it’s a momentary thing.

          God only knows how much this poison has damaged our bodies but over the last 3 torturous years I’ve read about a few theories, one other then gut dysbiosis and GABA receptor damage is cellular and DNA damage. Which I think stem cell therapy has a real chance in curing. I’m really looking forward to seeing how it goes for you, I would love to see you make a big stride towards total recovery. By the way, If you don’t mind me asking, what was the reason for taking blood thinners?

        • Lukasz May 30, 2020 at 9:09 am

          I hear you man. Sometimes the pain / suffering is bearable at best and other times it feels like the end. Surprisingly, since I posted my last video, things have taken a turn for the better. Though as always, I expect that this is temporary and I’ll be back to my usual state soon. Do you find there is anything in particular that sets off these cycles of pain and suffering or do you reckon it comes on on its own?

          Absolutely. The damage is multifaceted. There’s so much that needs to be repaired. I just wish money wasn’t a factor in all this, because as it stands, this decision between SCT and FMT is really weighing heavy on me. If only I had the money to do both, that would be the ideal scenario. Well, I guess it’ll all play out soon.

          Thanks a lot for the well wishes. I appreciate it.

          The reason for the blood thinners was to undergo 10-pass ozone therapy aka major autohemotherapy. They have to thin the blood in order to conduct this treatment. So they use a drug called Heparin to do so. In hindsight, it probably did more harm than good. I went ahead with it because this integrative medicine doctor made claims that this therapy would bring me back to health. I also had I.V. drips at his clinic including Alpha Lipoic Acid, Adrenal Fatigue Drip, Amino Acid Drip and High Dose Vitamin C. I don’t think any of these treatments helped as I recall being in bad shape afterwards.

          I hope for a different outcome this time around.

        • Azz June 1, 2020 at 4:32 am

          Hey Lukasz, I think setbacks are the nature of the beast but major setbacks are brought about by something we have done. I’m sure my setback 2 years ago was brought about by using a fungicide which is also known to have horrible side effects yet stupidly I put my trust into a quack again. I feel like your IV treatment did more harm then good as you were slowly improving up to that date then it suddenly got worse for you, the years have rolled by so fast it’s hard to believe. Thankfully I feel slightly better today then the last 3 days which were truly horrendous, felt like I whent back 2 years in recovery. Yesterday I whent to a beautiful beach with my wife and sun and couldn’t enjoy it, and that’s been my main problem for the last 3 years, I can’t enjoy anything, and I curse that bastard Quack for doing it to me. I think you’ve done a remarkable job to have struggled so long and I truly believe you will make it out. Something I keep telling myself as I read it somewhere is the sign of ups and downs is a good thing, it means your healing. You’ve done a great job of saving money as well! I can’t even save enough money to register my car.

        • natdavauer June 1, 2020 at 4:41 pm

          The “waves and windows” are my life now. A week of progress followed by a crash. Then a week of suffering and despair. This has been there cycle for months.

          What was the fugal treatment that set you back? I took flucanazole 2 years ago and felt great right away and then feel like it set me back to the beginning after that when terrible heart problems for 1.5 years.

        • Azz June 2, 2020 at 1:54 am

          Hey Nat, sorry I don’t remember the name of the anti fungal but it was a strong one, meant to be used for toe nail infections.

          I think every drug is toxic, and for our already toxic burdened bodies it’s a recipe for disaster

  39. Lukasz May 24, 2020 at 8:54 pm Reply

    Another day in the life of chronic illness:

    • Aga Rasmus May 25, 2020 at 12:21 am Reply

      Lukasz
      I know it sounds crazy but perhaps someone can drive you or you can go on buses and trains and get there somehow
      There must be a way of getting to the clinic
      Please someone help
      I live in Poland so I can’t get you there but someone out there can help perhaps?!
      Please, please someone?
      Lukasz, you look so tired and worn out and I feel for you
      I took azitrox and metronidazol 1,5 years ago and then Cipro liquid drops for 14 days 5,5 months ago so It’s only the beginning for me
      You are the only person here who was poisoned by ear drops like me
      I was always checking how you’re doing for hope for myself
      Please don’t give up
      Covid is making our healing journeys very very diffucult
      Aga

      • Lukasz May 26, 2020 at 9:03 pm Reply

        Aga,

        Thank you very much for your concern.

        I have a new set of flights for June 20th, with treatment set to begin on June 22nd. All I can do at this point in time is to hang on for another 4 weeks or so. It’s a daily battle, to be sure, but I’m determined to get there.

        I’m very sorry that they got you with these brutal antibiotics. I too was damaged by metronidazole as it was part of the triple “therapy”, alongside clarithromycin and a proton-pump inhibitor (PPI). It’s a very nasty drug.

        You’re right. There’s not too many of us who were injured by Ciprodex ear drops, at least not here. I’m certain there’s a fair share of people in the world who have experienced Ciprodex, they’re just not on this site. One thing I know for sure, it’s lethal in so many ways. What makes it so dangerous, is the fact that, it’s in liquid form. The brain, being surrounded by tissue, would be taking a massive beating from this drug seeing as it’s acting as a sponge and absorbing the poison. I truly believe these ear drops did the majority of damage to my brain. Of course plenty of damage occurred from the oral drugs too, but these drops really did a number on my mental health.

        Let me guess, you weren’t warned about any potential side effects? Or were you?

        In my case, neither doctor, nor pharmacist mentioned one word about side effects.

        Anyway, I hope my appearance and restlessness isn’t making you lose hope. I am still up for the fight. I would hate to lose the fight having come this far, but destiny reigns.

        Are you or have you been taking anything for your condition? Has anything helped you? Where in Poland are you from if you don’t mind me asking? I’m originally from Lodz.

        I wish the best for you. I hope in due time, we can overcome this. Trzymaj sie, Aga.

        • Chris A June 26, 2020 at 1:41 pm

          Hi Lukasz, sorry to read your story.
          I was poisoned during a course of Bactrim/ Keflex in 2014.
          I have similar symptoms to the ones specified on your list. The physical symptoms that i deal with are difficult enough but something you said on a previous comment stood out for me. You mentioned weight loss, and that is a constant reminder of it all. In 2014, before the problem i weighed 210. Three-four weeks after i was at 186. Now I’m at 153. I do have many food sensitivities but im way under what i should be. My muscles are small and have reduced stamina. All i hear from people is how ive lost weight. That part of it, added to all the physical problems causes lots of mental distress for me.
          Then i hear doctors tell me it was all a coincidence and i was overweight before anyways sucks too.
          I failed the tilt, had abnormal skin biopsies, bad qsart, low white counts.. Theres much more to it though.
          I have brain fog, lightheadedness, headaches, widespread pain, bladder control issues, bowel trouble, tinitus, floaters, weight loss, ulnar nerve problems, dizziness, heart palpitations and a 4.1 second pause, and doctors shrug their shoulders. Everyone seems to think im either crazy or exaggerating. It’s totally insane, and its a constant problem.
          I take LDN 4.5 per day, it may help with pain a bit. I just started CoQ10 and creatine, with a few others that help mitochondria. Its all trial and error as we all know..

        • natdavauer June 26, 2020 at 2:26 pm

          Hi Chris,
          I also had everything you describe. Still have some things but other things have recovered. I also failed the tilt test and had dysautonomia. It seems Many of the symptoms revolve around a dysfunctional autonomic nervous system. That’s also the nervous system that controls resting and digesting. So heart rate bowel movement etc. It seems that even though you eat, the control of the gut to digest and absorb nutrients just isn’t happening.

          You might try enzymes while eating and there’s a product called Metagenics that makes a easier to absorb IBD supplement food. it might be easier for your gut to get some nutrition and stomp the weight loss.

          I also did fecal matter transplant after which I started gaining weight back. Somewhat dangerous and seemingly far out therapy but also simple and obvious on a more practical level. I went to Taymount just to maintain safety as much as possible but it is expensive.

          On the upside it does seem like the ANS can heal itself but it just takes a long time. Hang in there and stay hopeful.

  40. filmingshakespeare May 27, 2020 at 3:21 am Reply

    Lukasz
    good to hear you have rearranged your flights!
    Funny that, I’m from Lodz too :):))
    Of course no one told me. Some doctors I have met since think I’m a loony bin, but some actually acknowledge it and that’s hopeful and helpful.
    There is a private doctor here that knows a thing or too about this poisoning so I’ve been taking the following:
    PAW PAW
    some Ukrainina gel by mouth that absorbs toxins
    Vectipur by NUTERGIA
    Epsolm salt and borax baths
    ACE – that’s for my adrenal support – it does help with sleep. I took it before floxing as well but recently my order was 2 moths late because of the virus and I did feel the difference big style ( I take 500 upon waking and then 250 4-6 hours later)
    collagen
    Vit C
    Vit E
    Vit D
    NAC
    Vit B complex for stress
    for sleep: 1 mg melatonin, 2 tryptophans, half a cup cherry juice, 1 drop of CBD oil 40%, strong lemon balm tea and ZMA (magnesium plus vit b6) – don’t know if it works or not, but I’m working on it
    I drink curcumin and ginger tea
    I occasionally take PPQ, glutathione, hydroxy b12 and concentrated curcumin
    I meditate in the evenings
    That’s about it!
    I don’t have half a thyroid due to cancer 5 years ago so I also take selenium for that and NDT.
    This is all is costing an arm and a leg but there is no choice.
    I have also recently been listening to Marisa Peer health hypnosis online.
    Stroking my dog helps a lot too!!!!
    Great to hear from you and I keep my fingers Xed for you!!!!
    Trzymaj się Łukasz!!! You’ll get there!! You will beat this!!!
    Aga

    • Lukasz May 30, 2020 at 9:50 am Reply

      Aga,

      Small world when you meet a fellow floxie who was poisoned by the same antibiotics as you, including Ciprodex of all ABX, and who comes from the same city as you. Btw, I also have a cousin named Aga (Agnieszka) who lives in Poland. : )

      Ah yes! The irony of doctors viewing us as loony bins when in fact, IT’S THEM, who are the loony bins for POISONING US. I’m really sorry that you’ve had to endure these types of doctors. Glad you found a few helpful ones along the way.

      That’s quite a few supplements you’re taking there. Reminds me of myself not long ago. I used to take between 10-20 different supplements each day. Most important thing is, if they’re helping you, keep taking them. I’ve had to stop taking mine as I felt myself getting worse over time. It could have been due to the supplements or the progression of the disease itself. Either way, it’s hard to know with supplements which are working and which are not. It’s mostly a guessing game.

      I wish for you a return to full health.
      May we ALL get through this storm.

  41. CB May 30, 2020 at 6:59 am Reply

    I’m reposting this comment because it has failed to appear several times.

    Dear Lukasz,

    It sounds like FMT is a step in the right direction, however it is quite an extreme procedure. I live local to clinic and decided against having it done due to the preparation steps they required which included colonic irrigation and/or large amounts of magnesium to “clean out the gut” which I’m not sure I agree with. If your gut is damaged, this process could make things worse.

    Instead, I spent my money on single-strain probiotics and had some good results. Some probiotics flare symptoms so if the reaction is bad, they are best avoided (I reacted badly to Lactobacillus GG and “spore” probiotics. I eventually found 4 probiotics that I tolerated fairly well and sometimes noticed a stinging pain my gut after I would take them (Jarrow IBS, BB536 imported from Japan, Linden’s Pro Bio Live Max Acidophilus and BioGaia baby drops). The stinging pain appeared in a specific area of my gut for only a couple days and then disappeared so I assume it was pathogens being killed off. I also took Sovereign Labs Colostrum LD vanilla flavor (this stuff is powerful so start with maybe 1/16th of a teaspoon, a tiny amount).

    I also took Now L-Lysine powder to make sure any systemic viral infections were controlled, I recommend this powder because it doesn’t have any fillers. The Now branded capsules give me a bad reaction so always try to get the pure powder.

    Prior to the probiotics, I had been eating the same 4 foods for a year due to the severe reactions I was having to most food. After I started the probiotics, I began to eat cheese and worked my way up to eating pizza which in my country contains fortified wheat flour and may have helped.

    I did some more radical things including ingesting 1 drop of 100% pure Thursday Plantation tea tree oil and 1 drop of 100% pure gum spirits turpentine. The 1 drop of tea tree oil caused the stinging pain in a specific area of my gut which I felt was a sign of die-off. I took these drops maybe 3 non-consecutive days and then haven’t touched them since as they are considered toxic.

    It does feel to me that the gut needs re-balancing and needs specific foods afterwards. Don’t be disheartened about the travel situation, have a look at the probiotics I’ve listed, they should be safer than the FMT and a good first step.

    As a disclaimer, I am detailing my own personal experience and we’re all different so please take any of the supplements I’ve mentioned at your own risk.

    Regards,
    CB

    • Lukasz May 30, 2020 at 11:23 am Reply

      Hey CB,

      Thanks for your comment.

      While I don’t take FMT and its’ risks lightly, I don’t see any alternative to healing my gut. I’ve tried many different forms and strains of probiotics in the past, all made me feel worse. My stomach couldn’t agree with any of them. While the single-strain suggestion is an intriguing one, I’m not sure I’m prepared to go down that route considering that this may deplete my finances further, without yielding much in the way of results. While FMT is a very expensive treatment, it’s always been on my “Last Resort List” for reversing this mess. That and the clinic I’m going to in 3 weeks time. Both of these clinics are my last resorts and I wouldn’t be able to forgive myself if I didn’t visit them. Both of these clinics have been around for quite some time now and have extensive experience and knowledge when it comes to treating pharmaceutical-induced toxicity. I’m not implying that your approach is wrong, it may be the best approach of them all, but my mind has been made up for a long time now. All I can do is take a leap of faith with these two clinics, and hope that they somehow reverse this mess.

      As for colonic irrigation, I’ve done it once before, in preparation for a colonoscopy, and for some strange reason, I actually felt better after it. Perhaps it was due to flushing out a fair amount of toxins and pathogens from my body? I really don’t know. Hopefully, if I go ahead with FMT, there wont be a negative reaction from both the preparation and treatment itself. Unfortunately, there’s really no way to know this in advance.

      From what I gather, you seem very knowledgeable about probiotics and have done well to bring your gut into an acceptable state. This is encouraging to say the least. However, I’m quite limited with my knowledge of probiotics, how they work, which are needed, etc so I’m opting to put my trust in the hands of others. While I hope this decision doesn’t backfire at me, at this point, given my quality of life, I have little to lose.

      • Azz June 14, 2020 at 1:16 am Reply

        Hey Lukasz, Your flight leaves on the 20th of this month still? You must be excited, I would be if I was you. I’ve really got a good feeling about this treatment, I think it could be a real game changer. Let us know how things progress please.

        • Lukasz June 27, 2020 at 5:35 pm

          Hey Aaron, as noted below, I’m leaving on Monday. I had some obstacles to get over but everything looks good to go now. There’s excitement but I’d be lying if I didn’t admit to having some nerves. As you probably know, there’s a lot of stuff going down in the U.S. right now, but I’m trying to stay positive among all of it. Nevertheless, I hope everything will go smoothly and that there won’t be any misfortunes coming my way. That’s the last thing I need.

          Hope you’re doing alright of late.

          I’ll be sure to fill you and the others in on the outcome of the treatment once I return.

          Take care for now and stay safe.

  42. M G June 5, 2020 at 8:58 am Reply

    Lukas, in the meantime, can you try Hyland tissue (cell) salts? It might help you at the cellular level.

  43. M G June 5, 2020 at 9:33 am Reply

    I’ve also been poisoned by the Canadian medical system, what a farce, isn’t it? My health story started in April 2015, felt weak, no energy, cold feet, left ear inflamed. The so called “doctor” prescribed me Biaxin for 7 days and due to my ignorance (not reading the side effects) I took the first capsule around 10:00 PM. I immediately felt something was wrong, right foot bit paralysed, jerky movements every 30 mins during the night (like someone awakened by the ammonia smell), couldn’t sleep at all. Next morning I decided to take the second capsule (2nd mistake), right foot still paralysed, anxiety set in, insomnia became the norm. I was shocked, never had any sleep problems (slept like a log before), in the next two weeks I lost 22 pounds, night sweats, tachycardia, constipation etc, probably the antibiotic “nuked” my gut microbiota and put it out of commission for good. Insomnia was so severe, for 4-5 weeks I could barely sleep for 1 hour (not joking), no energy left, barely talk. Luckily I left Canada to “die” at home and lived at my parents house (Europe) ever since. A prescribed sleeping pill helped me sleep for 3-4 hours and my appetite slowly came back. The current main symptom is still the insomnia (mild, no more sleeping pills) and some food sensitivities.

    • Jason June 8, 2020 at 5:29 pm Reply

      How long did the anxiety and crazy panic and derralisation last for you,
      Im 18 months off taken full course and struggle so much with the LSD feeling constantly feeling drugged.
      This has to go surely,
      Tinnitus is down slightly but i feel constantly on edge and tired of it.
      The world looks strange

    • erik June 10, 2020 at 6:32 am Reply

      Hi M G,
      Have you ever recovered? How are you today? Please answer…

      • M G June 11, 2020 at 4:14 am Reply

        I’m good, the only issue left is the sleep. Liposomal melatonin seems to help (not any brand, watch for ingredients), which tells me that somehow melatonin process has been affected.

        • Jason June 16, 2020 at 3:31 pm

          How many did you take,
          Glad you have made an almost full recovery
          Brings good news thats for sure

  44. M G June 17, 2020 at 4:56 am Reply

    Liposomal is in liquid form, a full dropper is around 1.5 mg of melatonin, better absorbed than capsules due to digestive issues that you’re trying to fix in the first place.

  45. Jeff June 20, 2020 at 11:31 am Reply

    I’ve tried antihistamines in the past to no success. Honestly I’ve had no success with anything I’ve taken since this began. That includes loads of supplements and probiotics. Plus of course the stupid pharmas I tried that drs pushed hard on me but dug me deeper. Have you or anyone had good results with a particular type of antihistamines?

    • natdavauer June 20, 2020 at 1:52 pm Reply

      Unfortunately no. The thing is that it’s not as simple as any of us, including Drs, want. Most remedies are targeted at *a* symptom. I.e. have a histamine problem? Take antihistamines. But what’s wrong is so much deeper and fundamental. Histamine, hormone, energy, neurological, organs etc etc etc are all not working. The MCAS is likely just another downstream problem that’s coming from fundamental cellular damage or something. We will never get better with a few drugs targeted at a particular symptom here and there. But there is an upside. The body knows it’s broken. It doesn’t want to be broken and even though you can’t see it, it’s working hard to fix things. Time is our best medicine here. Letting the body slowly work away at fixing itself does have consistent results. Almost every single person improves with time. Sometimes months, sometimes years.
      I’d still love a drug that helps and I still try things, but I’m never surprised when it doesn’t help or makes things worse. Keep trying though and don’t give up. Just making it another day is literally a step towards improvement.

      • Chris A June 27, 2020 at 6:12 am Reply

        Hi Natdavauer. Thanks for the response and the suggestion. I’ll definitely check out the Metagenics.
        Hope your doing as good as can be

  46. Jeff June 20, 2020 at 2:06 pm Reply

    I pretty much stopped trying new things being that nothing has ever worked. As well, my system is so sensitive and I’m already maxed out in pain and symptoms, that trying something new usually means driving it over the edge. Time this far has not healed me, but I’m still here somehow, not sure how. After two weeks in hospital am no better for anything. It’s a dreadful journey. I keep waiting to turn a corner but it doesn’t come. I’ve been diagnosed now with fibromyalgia, central sensitivity, FND and somatoform disorder. Pending on the osteoporosis and MCAS. Amazing how our “healthcare” system can do this to a person with their poisons and then have zero clue as to what’s been done. It’s a sick and demented game they play. I’m awaiting research studies that I’ve been accepted to but I’m wondering if I should even bother. I’m not willing to take a bunch more of their toxic junk for “research” purposes. Anyhow, I’m at 80 lbs weight lost and dropping, being I can barely eat. All food causes extreme reactions and I’m pretty much down to free range chicken or turkey, wild caught fish and steamed greens. No dairy, wheat, nightshades, sugar, caffeine, alcohol, barely any fruit. It’s not a life.

    • Jeff June 20, 2020 at 2:13 pm Reply

      In the note of it all being downstream. I feel it’s all downstream from the severe tinnitus. Whatever causes that noise in the brain causes everything else. Plasticity alteration, chemical restructure or both but I feel the tinnitus drives everything.

      • natdavauer June 21, 2020 at 7:14 am Reply

        I feel your pain. Been there myself. The good news is I’m not there anymore. I’m not all better by I’m not where you are now. Not sure when you were floxed but it took a long time to even start to make progress.

        For nutrition you might consider trying this..
        https://www.metagenics.com/ultrainflamx-plus-360
        Helped my a little I think and another floxed friend. Your body just can’t absorb nutrition right now.
        As I’ve said here before,I did FMT and I think that’s when I started gaining weight and muscle back. Your microbiome is almost certainly destroyed.

        I get the tinnitus focus. Me too. Really days it was that ringing/screaming noise and pressure that behind everything. That turned to hyperacousis that was unbearable. I think it’s just the entire CNS just screaming in pain. CNS can heal, but it takes a long time to heal. Hang in there

  47. Jeff June 21, 2020 at 9:03 am Reply

    Unfortunately fmt is not an option for me outside of using my own kids at home, which I’ve used a dozen times to no success or change. It absolutely all comes from the gut. Putting food of any kind in my stomach is like pouring gasoline on a bushfire. I already burn internally and externally 24/7 but food always pushes it harder as well as the tinnitus. I feel absolutely cornered, I appreciate you trying to help with the link you sent, even with that though I know I couldn’t use it as pineapple is acidic and my system won’t tolerate it without extreme torture. It amazes me how western medical supposedly spends billions of dollars annually on medical research, yet knows nothing whatsoever on the gut brain connection or how to fix it. But yeah, it’s not about proactive healthcare, it’s about profit and keeping people hooked on toxic pharmas. Anyhow, I’m pretty much screwed at every turn and my wife pushing divorce with no sympathy or compassion for what I’m going through whatsoever.

    • natdavauer June 21, 2020 at 1:16 pm Reply

      That stuff does come in a few different flavors if you want to stay away from citrus. Just FYI.

      I also used my kids for FMT but didn’t make progress until I was over 15fmts in through Taymont. I did another 20 or so after that. I’ve read it’s not uncommon for extreme dysbiosis cases to take many, many implants to achieve improvements. I’m over 35 in and still need to do more.

      I also feel your pain on the home front. My wife has no sympathy and even tells people “all I do is lay on the couch.” I did lay on the couch a lot the first two years but that’s because I literally had POTS and felt so horrifically destroyed. Was in total DPDR and suicidal ideation. I still managed to keep my biz running though and supported the family by myself and still am called “lazy” and “it’s all in my head.” Divorce is inevitable.

      I see a lot of anger for Western medicine out there and IMHO I say let it go. I don’t think any Dr really wants to hurt us but they know not what they do. I don’t think it’s a conspiracy and I do believe my Dr cares about me. The anger and regret I felt for even going to my Dr at the beginning doesn’t help me recover and it doesn’t change the system. It’s just a waste of stress which I have enough of and I know it just exacerbates things. Not preaching, just suggesting working toward letting go of the anger at the people who put you here.
      Again, hang in there

      • Azz June 23, 2020 at 11:45 pm Reply

        I know it hard for our wives to understand but I wish they would at least try, my wife saw first hand the change in me pre and post poisoning yet she’s never seemed interested in researching or asking how I feel. I’ve also been called lazy, I wish they could have it for a day or two to know what it feels like. Natdavauer, how is your depression these days? I’m still struggling with this, although its better then it was 3 years ago, I still sink into a hole in thinking that I’ll never be happy again. I know you’ve been in this nightmare a bit longer then me, does it keep improving?

        • natdavauer June 24, 2020 at 6:48 am

          It’s been steadily improving for the last 2 years. I honestly think it’s seratonin production in the gut. Lack of it and it’s impossible to feel normal and happy. After FMT I started to gain weight and started to feel more normal and more happy. Assumed I was making seratonin again. Summer is a big factor too for me. I’m much happier with lots of sunlight and warm temps.
          I do try to make some effort though. I don’t expect it to just snap back to super happy. I am conscious of trying to be happy and actively try to be funny with my kids. I figure it’s a little like a muscle and using it helps. Watch funny movies etc.
          I mediate in the morning sometimes and just look at everything and really, really actively be grateful I’m still alive etc. I desperately want to be back to the way I was before but I worry I’ll never be completely. But I want it badly enough that I’ll keep forcing it forward if I have to

      • Chris A June 29, 2020 at 6:26 pm Reply

        Hi Natdavauer. I did look into that Metagenics and i appreciate the info. When i said Ive had lots of weight and muscle loss (210-152) in the last 5 years with gastro issues, i generally meant constipation 90% and diarrhea 10%. I typically eat a lot. I have lots of stomach discomfort and pain but i eat a lot and keep gradually losing weight and muscular endurance. This is a baffling symptom to me. The other baffling symptom is overactive bladder, but twice in the last 5 years (once for 6 weeks and once for 5 months) i lost any urges to urinate. I was also constantly dizzy (and working full time). It was insane.
        But as far as the weight loss, its weight loss with lots of eating. I wasnt sure if i said that last time.
        As far as family members or wives go, its very difficult for anybody to understand the magnitude of what we deal with, and its ridiculously difficult for us as well. My father was poisoned by fluoros in the late 80’s and has had a difficult road. It effects so much. I had a similar experience in 2014. We were both 36. Everyone around us is affected and everyone reacts differently.
        I wish everyone the best!

        • natdavauer June 30, 2020 at 6:14 am

          Interesting story. My mom was as well. I was floxed in 2011 but didn’t know it unfortunately. Wish I knew.
          Sounds like it’s probably gastroparisis. The ANS controls motility of the gut and the ANS is broken. The gut can’t do it’s contractions that move food through and get absorbed. So food’s in there, but it’s not getting digested properly because the nervous system actually has to work for digestion to work. If you’re not digesting properly, your gut is also not synthesizing seratonin which you need to feel happy.
          We are alone in the magnitude of suffering. Only others like us can understand. There’s just no way for others. But some People are empathetic and I treasure them.

      • Chris A June 30, 2020 at 6:53 am Reply

        Thanks again Natdavauer. Yeah hindsight is definitely 20/20. All we can do is hope things improve. I knew 24 hours into taking Bactrim/Keflex that i was having a serious problem. The ER doctor literally told me to “tough it out.” I stayed on it the full 10 days. By then, i was a total mess. I appealed it to the hospital, wrote to the doctor, hired a lawyer, and got nowhere.
        I also have a SMALL amount of people that i treasure who have stood by me.
        My faith as a Christian is the main reason i can cope.
        Thanks for the gastro tips again.
        Also btw, i did quite a bit of research on mitochondrial repair. I do take CoQ10, Carnitin, Creatine, B’s, and a few others that help that.
        Thanks

  48. Lukasz June 27, 2020 at 5:08 pm Reply

    Hey friends,

    Just wanted to provide a quick update. First of all, I haven’t left for Los Angeles, YET. I was supposed to leave originally on June 1st, then June 20th, and now it’s June 29th, so this coming Monday. The reason for the on-going delay is due to airline issues and a chronic UTI. FUN FACT: Prior to taking these poisons, I’ve never endured a single UTI in my life. Since the poisons, I’ve had unrelenting chronic UTIs pretty much every couple of months. Anyway, it’s under control now and I’m good to go on Monday. Bags are packed and the appointments made. I see Dr. Ghalili for the first time on July 1st. From there, I’ll do a 5 day treatment with him on altering days. Hoping for a good outcome. Let’s see what happens.

    Hope you’re all hanging in there with all this COVID-19 crap going down and the usual daily grind. I’ll be back to report on the outcome of the treatment once I get home later on in July.

    Take care and stay safe.

    • Jason July 10, 2020 at 2:17 pm Reply

      How is everyone doing atm
      Hoping this year is treating you better to the goal of healing.

      Anxiety is a little down recently for myself which is great floaters are down tinnitus still off the charts.
      Still staying away from any medication.
      Still plenty of issues but trying to see the pros rather than cons

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