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.

1,298 thoughts on “Lukasz’s Story – Clarithromycin and Ciprofloxacin Poisoning, and Healing

  1. Perry September 14, 2020 at 1:04 pm Reply

    Lukasz, What about ginseng or other “male” Chinese herbs instead of dhea? I really recommend you try Chinese acupuncture and herbs especially since where you live probably has a great selection. I had good luck with two trained in Shanghai. The good thing is you don’t have to explain anything, they (if they are Chinese trained and experienced) can SEE and FEEL what is imbalanced. You don’t have to stress about them believing you, denying your illness or gaslighting you. Well, the best thing of course is recovery and relief and it might work for you. I found it to be extremely powerful and helpful.

    • Lukasz September 16, 2020 at 1:05 pm Reply

      Thanks for the advice. I’ve been meaning to find an individual who is well trained in this field of medicine but I haven’t started this process as yet. If I can’t get a hold of the supplements that were recommended to me, then I may start looking for a practitioner in this field of work.

      What kind of improvement did you experience?

      • Perry September 16, 2020 at 5:44 pm Reply

        Hey Lukasz, I don’t think you have to worry so much about researching an acupuncturist from China in Canada. I’ve had great experiences with doctors I don’t even have a language in common with. I think with the large population of recent Chinese immigrants in Canada, you won’t have a problem finding multiple acupuncturists, and probably at a good price. It’s a covered service in BC, too.

        Even when they insert a few points, I get very relaxed, almost a trance, my limbs too heavy to move. It is very powerful. It gives you better circulation as well. I don’t know how to explain it, but you can really feel it. I get kind of dazed immediately afterwards, but then I leave, go shopping or something, and later that evening realize I had had a very productive day. Feel clear, happy. It’s subtle but amazing in retrospect.

        My best experiences have been with doctors from Shanghai who did not normally work with non-Chinese patients. You can talk to them about your problems, what you expect, bla bla bla, but upon reflection you will later remember that they were carefully examining your eyes, your hair, your skin, taking your pulse, looking at your tongue. They have really rigourous training in China, so I cannot recommend a Canadian or US acupuncture school. I think the acupuncturists from China have to do the Canadian or US degree to get the license anyhow, so someone who also has a Chinese degree must be seriously overtrained!

        I lost everything and had to move to a really desolate area where I can’t get any decent kind of healthcare. I didn’t know that lack of access to Chinese medicine was going to be so devastating. I’m trying to figure out a way out of my situation and trying to teach myself at least the principles of Chinese medicine now. I am so envious of where you live in this respect!

        I hope I am not stressing you about yet another recommendation from yet another unknown person on the internet. It just seems that it’s probably inexpensive where you live and easy for you to access, and if you do it, you’ll see that it really can’t hurt because it’s a very gentle from of medicine. It’s just when I read your story, it really jumped out at me that it could help you, especially since you’re kind of international and like to travel and try new things.

        So do whatever you want, but if you try it and it helps you, send me some good vibes because I’m not doing so great. Thanks.

        • Mandy September 17, 2020 at 8:33 am

          Isn’t she’s steroidal? Aren’t we not supposed to take that?

        • Mandy September 17, 2020 at 8:34 am

          Isn’t dhea steroid

        • L September 17, 2020 at 9:37 am

          There is a difference between natural steroids (which we have in our bodies) and synthetic steroids.And yes, I would avoid steroids like prednisone, or cortisone, like the plague. But DHEA is an naturally occurring one. (I took it for a while.) I haven’t completely read through this article, but it give some idea of the difference. https://ijpsr.com/bft-article/a-review-of-natural-steroids-and-their-applications/?view=fulltext

        • Mandy September 17, 2020 at 10:40 am

          But that’s why it’s banned, because it is a steroid. It might make you feel better in the short term, but there are definitely risks.

        • Lukasz September 17, 2020 at 6:27 pm

          Perry,

          That’s great that it’s a covered service in B.C. I wonder if it’s also covered in Ontario? Probably not though. Even if it isn’t, I’m willing to pay out of pocket if it means finding relief from this daily hell. I’m now at a point where I get daily headaches or migraines, so if acupuncture and Chinese traditional medicine can help me with that, that in itself would be worth the expense.

          Thanks for describing the experience. Doesn’t sound bad at all. Is it painful when they insert and remove the needles? I’m guessing the good feeling wears off after a day or two?

          So a CTM doctor who was trained and certified in China is the way to go. I hope I can find a good one and not an imposter as I’ve already encountered a few of those, but that’s really interesting how they fully examine a person, right down to all the details. Conventional doctors never seem to take the time to examine these things, just want to prescribe their Rx drugs.

          So sorry to hear about you losing everything. That’s terrible. I can relate to you since I too have lost nearly everything. I’m still blessed to have a roof over my head but I’ve lost most everything else. I really hope that you’re able to get back on your feet soon and that your situation improves to a great extend. As for stressing me out, no, not at all. The opposite in fact. I appreciate your input on all this as it’s something I’ve been meaning to pursue for some time. I think now is the right time to start looking into this.

          Thanks again, Perry. I’ll be sure to send those good vibes your way if it all goes well.

        • Lukasz September 17, 2020 at 7:14 pm

          Mandy,

          As L already stated, there are natural steroids like DHEA (that are abundantly found in the human body IF they’re not wiped out by various factors) and synthetic ones such as the ones she mentioned, which are harmful to the human body. The natural steroid DHEA is supposed to be circulating is us but many of us are low or depleted of it. It’s the same with other vitamins, minerals and nutrients due to antibiotic-induced damage which wipes everything. DHEA is banned in some countries and not others. For example, in the U.S., it can be purchased from almost every health store, online and actual shops, while here in Canada, it’s banned. The regulatory agency that bans it here, Health Canada, also bans plenty of other supplements which are known to be beneficial to health. They also approve pharmaceuticals that contain black box warnings in the U.S. and allow them to be sold by drug peddlers aka doctors en mass to Canadians. So the point is, Health Canada doesn’t give a damn about your health or mine. If they’re keeping toxic drugs on the market and banning naturally-occurring supplements, what does that say about them?

          Steroids are a risk, alright, but not having enough steroids in your body is an even greater risk.

          Not trying to throw you under the bus here, Mandy. Just clarifying the difference between the two.

        • Lukasz September 17, 2020 at 7:38 pm

          L,

          If you don’t mind me asking, what was your experience with DHEA like?

        • L September 17, 2020 at 7:51 pm

          well I really don’t remember. Nothing bad for sure. I just was being treated for something I couldn’t “feel.” I was put on DHEA and some other supplement based on a blood test (perhaps high cortisol?) I think I stayed on it for awhile, and just stopped when the bottle was gone. ( I have to decide WHICH of the dozens of supplements I need to take at any given time. I have gone through shopping bags full.) But I didn’t have a bad reaction or anything like that. Of course, like anything else, dosage is crucial, but I am sure you got all that info from the doctor… How close are you to the border? could you just drive across, buy some in the US (then maybe put it into a different bottle? Go into the US with say an almost empty vitamin D bottle….)

        • Lukasz September 18, 2020 at 7:36 am

          Thanks for your input. I’m only an hour and a half away from the Canada-U.S. border. It’s a quick and easy drive but with the current situation, they’re not allowing anyone to cross unless it’s for essential reasons. I’ve already called both CBSA and U.S. CBP and they’ve advised me that I won’t be able to cross due to the closure. They’re following Public Health’s guidelines. Even when they re-open, it’s a risk to swap out the supplement like that since I can receive a lifetime ban from entering the U.S. if I was to get caught. There’s a good chance I wouldn’t get caught, but it’s not worth the risk.

        • L September 18, 2020 at 8:19 am

          Damn. It’s all so senseless. Is there a doctor there who could do a blood test? If it showed you were deficient, could you get it prescribed?

        • Mandy September 18, 2020 at 8:45 am

          Lukasz, Sounds like the melatonin story. Banned first and now ubiquitous. Drink fenugreek tea in the meantime.

        • Lukasz September 18, 2020 at 11:27 am

          L,

          That seems to be the only way to obtain it here. I might have to go this route.

        • L September 18, 2020 at 11:45 am

          Do you have an ND or integrative MD that you can show your info to from the prescribing doctor? (I forget..was it Ghalil?) You know, that reminds me of something that happened early on in my floxing. I was so bad. I was struggling to breathe because it would just cut off (nerve or mitochondria damage.) My vision was so blurred and full of hundreds of floaters. I was in excruciating pain. My gut was destroyed and I was down 1/4 my weight.I had this hideous olfactory nerve damage that made everything asphyxiate me to the point where it hurt to inhale. Bodywide hives, hair coming out in chunks. The mental side effects were nightmarish, and on and on. I was SO desperate. And I found a doctor mentioned in a video I had seen on fluoroquinolones, who was in Indiana, at a teaching hospital, who was trying to help people like us. I contacted him (he has since died, as has his wonderful successor) and this man was so kind. I told him there was no way I could fly there…but because I was in a different state he could not advise me. However, he offered to do a phone consult FOR FREE with a physician here. I contacted a half dozen of them and not ONE would do the consult. I even contacted a doctor I had seen for over 20 years. Crickets. (I ran into him at a store not too long ago and went up to say something. He made up some excuse about slipping the letter I sent in a magazine and then forgetting about it. But I know the real reason. These doctors are thick as thieves, and by taking the call it would have been admitting I had been harmed by Cipro. And they have ALL used it before. Plus they protect each other. Shameful.)

        • Lukasz September 18, 2020 at 12:56 pm

          Unfortunately, no. I only learned about DHEA and its benefits after reading Ian’s story. Had I not read his story, I wouldn’t even know it exists.

          Yeah, they really do everything in their power to keep the pharmaceutical genocide a secret. Except everybody can see through their bullshit these days and many people know better than to take a pharmaceutical, thanks in part to websites like this. Unless, they’re unconscious of course. That’s when these psycho doctors and nurses go into full ‘Get Rich Fast’ mode and start pumping the victim full of antibiotics or other drugs. Then their victim goes home and realizes that something is really off but rarely makes a connect to their hospital stay where they received X number of grams of poison into their veins. Then these psychopath doctors, nurses and pharma shills go about living their posh lives like nothing happened.

          It’s a sick, disturbing world we live in, L, but I like to think the pain and suffering we’re going through as a result of their actions won’t go unnoticed. I like to think that at some point, karma will come around and take care of them. Then they’ll have a taste of their own medicine.

        • L September 18, 2020 at 1:35 pm

          I sure hope so. I have to say though, if I post something on facebook about pharma and greed and corruption, I usually have people jump all over me with “but science!” I point out that the science is often bought. I give links to credible sources. But they are SO brainwashed. And they don’t link their auto immune problems or other health issues to all the meds and vaccines. Here is a perfect example. This is from the well-respected Science Alert. Even “media bias,” which mostly, erroneously savages any natural health cites, gives this source a “high” factual rating and calls it “pro science.” https://www.sciencealert.com/how-much-top-journal-editors-get-paid-by-big-pharma-corrupt

        • Lukasz September 18, 2020 at 5:20 pm

          It’s because, as you said, they’re just too brainwashed to know any better. It’s as simple as that if you ask me. The way everything is setup, you can see why they would be so inclined to ride that bandwagon. After all, the presentation of these scientific journals and studies is so professional and the language so fancy that everything presented within them MUST be true. Surely, men and women of such intelligence wouldn’t lie to us, would they? It’s all smoke and mirrors. Sadly, many people have a sheep mentality and are easily swayed into believing that science knows best. It’s why I avoid all these social platforms, not to mention news media itself, which is mostly propaganda anyway. I know, from firsthand experience, the damage pharmaceuticals and other “medications” do so I know better than to go down that route again, but if others want to do so, it’s their life. We can only warn them. After that, it’s all on them.

          Thanks for sharing that article.
          I found it to be very interesting.

  2. Lukasz September 18, 2020 at 11:43 am Reply

    Mandy,

    Exactly. They ban and approve as they wish. Most of the decisions revolve around politics rather than people’s well being anyway.

    Thanks for the tea suggestion. Lately I’ve been drinking a herbal tea containing aniseed, sweet fennel seed, cardamom pod, licorice root, coriander seed and turmeric root. Pleasant tasting tea and seems to be good for digestion. I’ll have to try fenugreek soon.

    • Mandy September 18, 2020 at 12:46 pm Reply

      Hey Lukasz, that sounds like a great tea. Do you mind if I borrow your recipe?

      Actually the fenugreek is good for testosterone but it also sounds like it would mix in well with your South Asian inspired tea. It’s called methi in India and halba in Arabic.

      L, that’s why I go around the way with a Chinese trained doctor/acupuncturist! I don’t want to tell people what ethnicity their doctor should be, it’s to get out of the medical establishment mindset. At least you got to know a decent doctor, at least for a short time. RIP

      • L September 18, 2020 at 1:29 pm Reply

        Well luckily I have since met several decent doctors, NDs, health care providers. Not only was this initial Indiana medical school dr a sweetheart, but the guy who took over when he passed away. He tried to carry on the same work helping flq victims, and sadly he himself died too young of another disease.

        • Mandy September 18, 2020 at 6:02 pm

          Hi L, You probably tried this already, but there must be someone who worked with those doctors or studied with them. Don’t give up trying to reach someone connected. What were their names?

        • L September 18, 2020 at 6:33 pm

          Oh I have been to over 40 since this all started. These guys were treating patients in a very rudimentary way. But they were at least trying to help the injured. They were kind of pioneers, along with Dr Jay Cohen. In fact, I just saw that Lisa had posted about him here. https://floxiehope.com/2015/12/07/in-memory-of-dr-david-flockhart/

        • Lukasz September 18, 2020 at 6:09 pm

          As much as I despise doctors for what happened to me, I have to acknowledge that there are some kind-hearted, generous doctors, who give their time and do all they possibly can to help those in need without resorting to prescribing drugs. I’ve met a few of them myself and sincerely appreciated their time and willingness to help me. I wish you luck with future doctors and yes, may those two good doctors rest in peace.

      • Lukasz September 18, 2020 at 3:35 pm Reply

        Mandy,

        The tea I drink is from a tea selection box. More specifically, the one I was referring to is the Feel New (Organic) Tea from a company called Pukka. All those herbs are inside the tea bag.

        If I can find the seeds locally, I’ll heed your advice and make tea out of it. If not, I’m going to try to find fenugreek powder and sprinkle it on my meals. Seeing as it has a similar taste to maple syrup, it should be be a decent food topping alongside the testosterone boost.

        Thanks again for the advice.

        • Lukasz September 18, 2020 at 3:45 pm

          This is the tea I was referring to above – Pukka Feel New – 20 Sachets:
          https://www.pukkaherbs.com/uk/en/products/organic-teas/feel-new.html

        • Lukasz September 18, 2020 at 3:56 pm

          And here’s the tea selection box I referenced earlier:
          https://www.pukkaherbs.com/us/en/products/gifts/pukka-tea-selection-box.html

        • Mandy September 18, 2020 at 4:38 pm

          Lukasz, Cool, they give you the exact percentage, because you can get a whole bag of each ingredient for a loonie or a toonie. You bought from them already, no guilt in making your own now!

        • Lukasz September 18, 2020 at 6:21 pm

          A pack of 20 sachets goes for $7.99 so it’s not so bad. Though you’re right, if I was to buy individual ingredients, they would last longer and I’d get more cups out of them.

    • Mandy September 18, 2020 at 12:51 pm Reply

      Sorry to switch names! I haven’t decided on one yet.

  3. Lukasz September 30, 2020 at 9:00 pm Reply

    It never ceases to amaze me how quickly and abruptly a person’s life can be taken from him. One minute you’re living the dream life, and the next, you’re caught up in a nightmare. Fuck destiny. Humans are responsible for destroying other humans. Plain and simple. This world is a fucked up, cruel place. May the pharmaceutical companies, health agencies, doctors and pharmacists, all burn in hell.

    See you all on the other side.

    • L September 30, 2020 at 9:26 pm Reply

      Lukasz, did you take a turn for the worse? Are you okay? (I mean I know none of us is really okay…)

      • Lukasz October 1, 2020 at 4:38 pm Reply

        L,

        Yeah, things seem to have taken a turn for the worse. Anxiety has been really bad of late. Not sure what’s causing it. Maybe as Nat stated below, the weather? Maybe 5G? No idea but whatever it is, it’s making me very anxious and irritated. Add in 6 years of this, and I’m just plain tired of it all.

        Sorry for the anger.

        • L October 1, 2020 at 5:22 pm

          No apology necessary! Just glad to hear from you. Interestingly the last couple days have been bad for me…and they have also been very hot and humid. Can I ask how much Dr G was going to charge you for stem cells, and what type they were?

        • Lukasz October 1, 2020 at 8:03 pm

          Sorry to hear that. I hope your pain diminishes in the coming days. Pretty sure 5G is playing some part, maybe even a big part, in us feeling off. I just don’t know how much of this is related to that and how much is related to other factors. Unfortunately, there’s no way to find out.

          I think he charges 9,000 USD for them. At least that’s what I recall being quoted over the phone. I’m not sure about the type as I never inquired beyond the cost.

        • L October 1, 2020 at 8:07 pm

          I actually got a meter to check for RF radiation. (I went to hear Dafna Tachover, an expert and attorney in the field, and she recommended that. The one I have is by Cornet. Where I am staying now is actually higher than the studio I had to leave, but still pretty low. And I turn off the wifi at night. (If I had my own place I would get wired.)

        • Lukasz October 1, 2020 at 8:39 pm

          I borrowed one of those units (not the one you mentioned but a different one) a while back and it was off the charts when I brought it close to wireless phones, internet modems and other wireless devices. I use an ethernet cable to connect my computer as I don’t need any more electrical waves destroying my health even further. The communications companies are already doing a fine job of that every time I leave my home. As if this world didn’t have enough hazards already.

        • L October 1, 2020 at 9:22 pm

          Yeah. So totally screwed up. Then Elon Musk and others sending thousands of satellites into space so we are blanketed in RF radiation. I was watching a video the other day where they talked about a study where they put mold right next to wifi. And the same mold away from it. The one near the WiFi grew like 600x as much. Great. I am fighting mold illness on top of everything else. And I am certain my reaction was so devastating because of the cipro damage.

        • natdavauer October 2, 2020 at 1:22 pm

          Have you read the Medium.com series by Jen Brae? I’m in the same camp of mold exposure and subsequent illness being the first thing that happened. Jen and I have similar histories and outcomes. Now I struggle with a clear neck/brain problem. She got surgery on her neck and spine and saw remission of CFS. I’m curious how mold started it all for you and if you see similarities in Jen’s posts?

        • L October 2, 2020 at 2:09 pm

          I was not familiar with that. I just took a quick look. I don’t have typical ME symptoms. My really only main one is over-production of phlegm that fills the back of my nose, my throat, and eventually my lungs, making it very difficult to clear or breathe. Can feel just suffocating at times. Truly nightmarish. (I did however notice collagen breakdown mentioned, and I had plenty of that post cipro.)

          I think the mold (it was not black mold) might not have effected me had it not been for the cipro. And then I was tested for Marcons, which many with mold illness get (an intractable nasal infection deep in the sinuses that is protected by a bio film.) and when I read about that, I read that most people that get it usually have a recent health even (like pneumonia) OR they were on cipro!!!!

          the thing is I was in this apartment for ten years.There was no change in the air quality, no leaks, nothing like that. So I have to believe that the Cipro eventually wore down my ability to withstand the mold. I think it made me more sensitive (and I already had mold allergies) and also perhaps there is a nerve dysfunction issue. Not sure how to deal with that.

          Meanwhile I just started what’s called LDA therapy. It differs from allergy shots or drops (which I had in the past) in that you are not pretested for allergens. you are given an under the skin injection with a mix that is supposed to make your immune response normal, instead of viewing every damn thing as an assault on your body. I think I will need a few more (spaced a couple months apart) to see if it will help. Even if it does not fix this issue (because maybe it IS nerve damage) I would still like to not have to worry about encountering mold or other substances in the future. I have no idea who this doctor is, but he gives a good explanation of LDA. (There is also LDI, which is like homeopathy. It was recommended to me to try that with a bit of cipro put into it. I REALLY trust my ND, but not sure I can take that stop. Maybe if nothing else ends up helping and I have nothing to lose.) https://www.drkaslow.com/html/ldilda.html

        • Lukasz October 1, 2020 at 9:00 pm

          Bees vs. Technology:

    • Azz October 1, 2020 at 2:23 am Reply

      A better day will come soon, hang in there

      • natdavauer October 1, 2020 at 6:21 am Reply

        I always get worse as the season changes to cold. Had a huge setback that started yesterday. Not sure why. Seems to be the cold and/or low pressure. You’re in an even colder climate than me. The ans is what deals with temperature in the body and I know our ANS is not working. So this cold is a big assault on our nervous system. I’m hoping it’s an adjustment period and than back to base line. I’m also looking to get one of those single person near infrared saunas and just sit in it everyday this winter. Hang in there.

        • L October 1, 2020 at 9:34 am

          and interestingly I always do worse when it gets really hot…especially hot and humid.

        • Lukasz October 1, 2020 at 4:51 pm

          Nat,

          Sorry to hear about your setback. I’m trying to make sense of it but it could be any number of things, including, as you said, the weather. Many factors at play in 2020.

          Thanks for the support.

      • Lukasz October 1, 2020 at 4:47 pm Reply

        Aaron,

        I hope so. Thanks for the encouragement.

  4. erik October 1, 2020 at 4:29 pm Reply

    I just received my GI360 test and on scale 1-5 my dysbiosis is 5.
    What do you guys do to improve the gut? I see that Lukasz done FMT. Why did you have to go to UK for this? IS there any place in USA?

    • L October 1, 2020 at 5:19 pm Reply

      something I am doing now (because an ND suspects perhaps parasites) is a protocol (for five days, and then see how I feel) that is rather complicated with four products by a place called cellcore (para 1, para 2 and para 3, as well as cellcore biotoxin binder– that are taken at different times of the day—as well as something called mega sporebiotic. (It’s a real juggling act with all the OTHER stuff I take.) I am just at 2 1/2 days at this point. So hard to know what is causing the dysbiosis…and you may have seen something from Lisa about a neuroscientists (I think) who is doing a study on whether the gut issues are related to damage to the part of the brain that controls it.

    • Lukasz October 1, 2020 at 7:40 pm Reply

      Erik,

      Sorry to hear the news. Unfortunately, dysbiosis is an all too common occurance following antibiotic use.

      The U.K. is one of the few places on the planet where FMT is performed. As you can imagine, it’s not the nicest procedure, so very few clinics around the world offer this service. Taymount Clinic U.K. are one of the few in the business and I believe they’re one of the first, if not the first, to offer it. Seeing as the choices are so limited, it only made sense to go there for treatment. That and the fact that they have the most experience performing this treatment. Taymount also has some affiliate clinics, including one is Bratislava, Slokaia, Nassau, Bahamas and they had one in Duncan, British Columbia, Canada but I believe this clinic has shut its doors as I don’t see it listed on Taymount’s website anymore. I’m sure there are some clinics in the U.S. that also offer this treatment, but probably not very many. If you do find one, just make sure they have significant experience and a reliable donor bank before going ahead with any treatments. Some people have supposedly died from contaminated stools. As far as I’m aware, Taymount hasn’t reported any deaths, at least so far. The process isn’t so straight forward, but I don’t know of any other way to reverse disbiosys other than FMT itself. Perhaps there is, I’m just not aware of any other method.

      There’s also prebiotics you can take including one called Bimuno. It’s also from the U.K. and has a good reputation aka good ratings from users of this product. They had me use it during treatment. I’ve been off of it for the entire month of September but I got back on it this morning. You can find it on Amazon or buy it directly from the company itself as they ship internationally. Their website is here: https://www.bimuno.com/ They also offer international shipping. The product I’m referring to is Bimuno DAILY. You can buy them in 30 day supplies, 60 day supplies or 90 day supplies with the 90 day supply being the best value. This product supposedly feeds the beneficial bacteria. At least, those are the claims.

      Last but not least, a clean, varied and high-nutrient diet should also help in this regard. No quick fix though.

    • Azz October 2, 2020 at 12:30 am Reply

      3 years ago my stools were bright yellow (undigested) and now their a solid brown, I’ve also noticed that I’m not as lactose intolerant as I used to be, my other symptoms aren’t significantly better though.

      • Lukasz October 9, 2020 at 8:30 pm Reply

        Aaron,

        That’s a big step in the right direction. The only thing that helped me in this regard was FMT. If not for it, my stools would still be like the ones you described (pale and undigested). So your stomach situation is improving but not the neuro situation. Sounds a lot like me. Perhaps as discussed below, we’re dealing with a brain stem injury or inflamed spinal fluid. Maybe even toxins lodged deep into the brain tissue.

  5. A.Coleman October 8, 2020 at 1:50 pm Reply

    Lukasz; I read with interest your update discussing Craniocervical Instability (CCI) and Atlantoaxial instability (AAI). I am getting much better with most of my floxing symptoms but still have headaches, brain fog, lightheadedness and some days a sore, stiff neck and it pops when I roll it back and forth during these episodes; but will be perfectly normal at other times and even for days at a time. I had been looking for what tied it all together. Reading other posts I wondered if I might have a cerebral spinal fluid leak but while my symptoms are consistent with that diagnosis the timing of the symptoms isn’t.

    I tend to wake up with no or mild symptoms and do pretty good until around noon. Then symptoms tend to progress getting worse around 4 to 5 PM. After that they start getting better and I will be feeling fine by 8 PM. This happens on weekends too; but it might partially stress related since it is often a bit worse on work days.

    I now wonder if CCI or AAI may be the culprit. It all started with a very sore stiff neck a few years ago and following a trip to a chiropractor I developed tinnitus. Today the neck is much better, but not well and the headaches / brain fog / lightheadedness is about 50 to 60% better than at the worst. I have been seeing a new neurologist the last year who at least believes me when I say I was floxed. I have an MRI coming up as I was recently diagnosed with very mild central sleep apnea (as opposed to obstructive sleep apnea). When they go to read the MRI I will ask them to consider CCI or AAI.

    I will leave you with some hope. I have started having a few days where I am mostly normal (95% or more of the old me); only two or three a month but as someone who just experienced their 5 year floxiversary continued, though very slow improvement is welcome. I still expect some day to be to that 95% of normal at least 90% of the time; though I suspect 100% healing all the time is never going to happen.

    Have you had any workups for CCI / AAI or any thoughts on the method of action of the FQs that would cause the loose ligaments?

    • L October 8, 2020 at 2:06 pm Reply

      Wow! A neurologist who believes you! That’s really something. (I’ll bet he/she also is aware of possible permanent nerve damage from FLQs.) Good to see there are some enlightened ones out there. Of all the ill-informed doctors I saw the two neurologists were hands down the worst.

      • Lukasz October 9, 2020 at 7:11 pm Reply

        L,

        The one I visited looked at my old MRI, said everything looked fine and sent me on my way. This after waiting months to see him. I’ve come to realize that they don’t give a damn about us. They really don’t. They collect money (cash/insurance) for each of our visits, spew some bull crap to kill the time and move on to the next patient until the day is up. Rinse and repeat. And the cure for what ails us? Please book another appointment. We’re out of time.

    • natdavauer October 8, 2020 at 3:20 pm Reply

      I’ve talked about CCI and other neck problems on here a lot because I have very similar problems at this point. I was floxed 4 years ago and went through so many things but they evolved into neuro problems that from my experience, clearly stem from my neck and brain stem. Always feeling like high CSF pressure or a leak. Or brain stem compression or blood flow problems. I can absolutely feel it’s at the center or my continued suffering but I am torn as to if I think it’s fundamentally a microbial imbalance problem causing inflamed nerves or something or if it’s a structural problem like physically compressed vertebra because of collegian damage. Totally lost. But I’d tell you to join the CFS neck and brain group on FB run by Jen Brea. She is the one championing the idea that these neck issues are actually at the root of a bunch of chronic illnesses. You’ll find MANY people there with the exact same problems. And it seems that many doing know what to look for in these cases on the MRI and yet, there’s a few who do and people have had complete recoveries after having surgery by them.

      • Lukasz October 9, 2020 at 8:14 pm Reply

        natdavauer,

        Have you considered attending one of the clinics where they can perform the neck/head scan to check for CCI/AAI? You’re in the U.S. so it should be a little easier to find a location where they have the proper equipment to carry out this scan.

        I know you’ve been addressing your gut issues intensively, so perhaps as you said, it’s a physical problem rather than a microbial one? I’m starting to lean in this direction as well but it’s also possible that it’s a combination of the two. Only way to know for sure is to have this scan done.

        What’s Jen’s status now? Is she back to full health? Awhile back I saw that she was reporting post-surgery ailments and not fully recovered from the surgeries? I think her CFS-related symptoms were resolved by the numerous surgeries though, right?

        It’s odd but the only things that seem to help my constant neurological / psychological issues is fats like goat milk and fish oil. Nothing else works but these two seem to ease the pain almost straight away after consumption. Only temporarily though. Have you observed the same?

        • natdavauer October 11, 2020 at 6:57 am

          Jen isn’t perfectly recovered but the amount of people in the group who are finding that connective tissue disorders and structural problems in their neck and spine are causing many downstream neurological problems is growing. The majority of doctors seem to not believe or look for the subtleties in imaging that seem to be there if looked at by the right people. Maybe the best resource of the group is finding the few select doctors who are familiar with the outcomes of people who have had surgery following subtle evidence on scans that were considered normal by most others and ended up with improvement. There’s also the non-surgical route of injections and stem cells which people have tried and seen success with. I’m also definitely considering that option.

          My gut issues are not totally resolved by any means but they are plateaued at a point where I don’t see any dramatic positive or negative effect from eating. It may be happening but I can’t pinpoint much either way. I still fundamentally do not know which direction the cause and effect here is though. It could be that a microbial imbalance caused by the antibiotic is the fundamental problem. But it could also be that physical damage or compression of something like the vagus nerve is causing problems with the CNS communicating with things like the digestive system. In that case the gut problems would be because the nerves that control how it works are compromised. For instance, Jen bray got “normal sick” for the first time after surgery. That implies that her immune system was not functioning properly because of physical impingement of the nerves that send signals to the immune system. Hi can identify with that because I haven’t gotten a normal sickness for 4 years but I’ve been sick in a different way every day for 4 years.

          I saw a neurosurgeon who completely shut me down as usual so I’m kind of starting over as to finding my way to one of these other neurosurgeons who are familiar with the subtleties that could be caused by connective tissue neck problems. The key is getting in front of a doctor who understands what group you’re coming from rather than seeing you as a normal patient they just assume is a hypochondriac on Google.

    • Lukasz October 9, 2020 at 6:45 pm Reply

      A.Coleman,

      I’ve had 2 MRIs, some years apart, and both came back clear. Both times, the technician had no clue what I was referring to when I mentioned CCI/AAI and wanting to have that ruled out. I later learned that it’s a completely different x-ray than the conventional MRI and so they’re not familiar with it here. In fact, a doctor once informed me that they don’t have a single x-ray machine that is capable of detecting CCI/AAI in the province where I live. The closest one is supposedly on the other side of the country, in the province of British Columbia. They have some in use in the States but they’re also quite sparse over there. I recall New York state and Washington D.C. being mentioned as areas where they’re being used, as well as a few places in Europe. If access was easier, I wouldn’t mind travelling down to one of the clinics and undergoing this x-ray to rule out CCI/AAI, but with the way things are right now, it won’t be easy. Having said that, I’ve always suspected that this could be spinal related considering I too have had frequent headaches (mainly migraines), spells of dizziness, lightheadedness, feelings of being spaced out, indescribably painful burning in my head that feels like acid is being poured on the inside of my brain (inflammation?) and brain fog that impairs my ability to read and comprehend information. I know for certain that there is something very wrong in the region of my head and perhaps even my spine but I simply don’t have the energy to pursue answers anymore, as I’m completely spent from fighting this for the past 6 years.

      As for the FQs and a possible method, my only guess is severe inflammation. Since they’re known to cross the blood brain barrier (BBB), it’s likely the brain and spinal fluid is full of inflammation and that this is the reason why some of these symptoms exist. That and toxins lodging themselves deep in the brain’s tissue is my speculation.

      I would be curious to know what they tell you when you go to inquire about this condition but my guess is that they won’t have a clue about what you’re talking about unless you are able to attend one of these specific clinics where they have the right technology and are capable of diagnosing CCI/AAI. I hear these clinics aren’t cheap either.

    • Lukasz October 9, 2020 at 9:01 pm Reply

      Forgot to mention that I too experience a gradual decline in overall health as the day drags on. My pinnacle well-being is the morning and then I start to get progressively worse. Unlike you though, I don’t go back up in health later in the evening. I stay bad. Interesting to see that you also experience this. Makes me wonder if this is related to our damaged immune.

      Btw, congrats on the improvements made. Having kept up with some of your posts over the years, I know you’ve been through a lot in these past 5 years, so even minor improvement needs to be celebrated. I truly hope you’re able to reach that 95% peak at some point and remain there for good.

    • Lukasz October 9, 2020 at 9:03 pm Reply

      *Immune system… sorry.

  6. Lukasz October 9, 2020 at 9:29 pm Reply

    Any of you taking L-methylfolate? Is it safe for us to use short-term and/or long-term?

    • L October 9, 2020 at 10:14 pm Reply

      Everyday. I have the mthfr Mutation which doesn’t allow me to process folic acid. It’s added to many foods (not that I can eat most of them anymore) and not only can I not process it but it can build up to unhealthy levels (folic acid). So I have been taking methyl folate for several Years now. I think most floxies likely have one or both of the mthfr mutations. My blood tests have never shown me to be high so I’ll keep taking it. So important for so many cellular functions

      • Lukasz October 10, 2020 at 11:15 am Reply

        Thanks for the input. Do you also take the methylated form of B12? If so, do you take these two together or apart?

        • L October 10, 2020 at 11:36 am

          I remember reading somewhere that you don’t want to take a single B and risk throwing the balance of the others off. So I take supplements that have all (or at least B12, B1 and B6, which I think are the most important for nerve damage.) BUT now that you mention, my B12 is not …it is the cobalamin form…and I probably should be using the methylcobalamin form. Thanks for bringing this up. Going to look for that in my next supplement.

        • Lukasz October 10, 2020 at 12:17 pm

          Re: B6, Dr. G told me to avoid it. He said it can make matters worse for some reason. As for B12, he wanted me to take it only 3 times per week. And yes, methylated form is best for sure as it’s most easily recognized and absorbed by the body.

        • L October 10, 2020 at 12:21 pm

          Interesting. I see on mine the b6 is the lowest, at only 2 mg. I usually take the complex every other day, instead of daily. Will have to run all this by my current ND. Thanks

  7. Jeff October 10, 2020 at 8:56 am Reply

    Hey all, I haven’t been here in awhile. It’s sad to come here and see how so many of you are still suffering so much. Anyhow, I’m here to tell that I haven’t made a complete recovery, but am back to about 85% of my former / normal self. How did this come to be for someone who was about as rock bottom as could go you ask? Well, my neurologist sent me to a special neuropyschiatric unit in Vancouver for six weeks, for ECT treatment. I was reluctant at first but figured what did I have to lose. I received two ECTs per week for six weeks under propofol anaesthesia. I found ECT greatly reduced the neurological burning hell that had previously pushed me to the edge of my sanity. My symptoms aren’t gone now but are at a level where I can live again. I had lost 80 lbs as I was unable to eat anything without causing extreme neurological burning in most of my body. Now is barely an issue. I will be receiving one ECT per every two weeks starting again soon to keep this demon at bay. My most persistent symptom is the tinnitus which at times is still very overbearing but it does also reduce sometimes as well. I literally feel like I’ve returned from certain death. So, if asked if ECT is a positive form of treatment for neurological symptoms that no medication or supplements seem to be able to touch, my answer would most definitely be yes.

    • Jeff October 10, 2020 at 8:59 am Reply

      And yes, I’m back to eating like I used to and finding food is not effecting the burning issue that made life intolerable before. I am slowly gaining back my former weight.

  8. Lukasz October 10, 2020 at 11:47 am Reply

    Jeff,

    That’s great news! Super happy for you!

    I’ve heard of ECT and it’s something I’ve considered in the past many times, especially near the beginning of all this, but I’ve heard of some people going the other way and decided against it. Plus the use of anaesthesia really put me off. I’m guessing it was a non-issue for you? I met an older gentleman a while back who was also helped by ECT and was convinced that it saved his life. He suffered from major depression for years before deciding to go ahead with the treatment. Looks like you had the same result as him.

    Some Qs…

    Can this treatment be done without the use of anaesthesia or is it a requirement?

    How much did it cost you? (If you’d rather not disclose this, ignore this question).

    Did this treatment completely rid you of depression / anxiety or partially resolved?

    Glad to hear that awful burning feeling is gone for you. I’ve had this feeling in the past and it’s absolutely torturous. Also, it’s interesting how you’re now able to suddenly eat more and regain some of the weight you lost. This is further evidence that the gut and brain work in synergy. Is this procedure painful or easy to tolerate?

    • Lukasz October 10, 2020 at 12:25 pm Reply

      When I say painful, I mean the time frame after you wake up from the procedure. Is there pain and discomfort upon waking up?

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