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

** 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.

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

  1. Lukasz November 30, 2018 at 5:53 pm Reply

    Azz,

    Re: my Go Fund Me page, it didn’t go very well. I managed to raise only $150 of which $100 came from family members. I’m paying for my treatments out of pocket. To be more accurate, I’m borrowing money from my parents since I’ve been broke for some time and haven’t been able to work since end of March. Like you, I’m on social welfare/assistance.

  2. Lukasz December 2, 2018 at 6:58 pm Reply

    A short video on the supplements I’ve been taking:

    • L December 2, 2018 at 7:55 pm Reply

      Double that, add 100 ivs, and you’ve got my “protocol.” Not sure I mentioned, but my new doctor (integrative) told me I was taking too much and needed to take breaks from them…including magnesium. He said magnesium will lose its effectiveness if you take it day after day without a break. Makes me nervous, but I stopped them all this past week. (He recommends one week on, one week of…or one month on, one month off.) Not sure I can do that! I think I will thought take periodic breaks. IT’s actually good. I was taking so many that at times it would make me nauseous.

      • Lukasz December 3, 2018 at 4:24 pm Reply

        A nutritionist at my local health food store says the same thing about the supplements.

        I’ve got a new problem on my hands now. I’m waking up very confused and agitated. It almost feels like I didn’t sleep at all throughout the night. Have you had this happen to you? I think it began around the same time as I started CFD (Chronic Fatigue Drip) but I can’t be sure. I hope these people aren’t messing me up further with these I.V. drips.

        • L December 3, 2018 at 4:36 pm

          Glad for the confirmation on taking supplement breaks. I have become so attached to them, I feel like going off of them is liking doing a highwire act without a net.

          So sorry to hear about the latest issue. I have not experienced that. I went from total insomnia, to sleeping 1-2 hours WITH a sleeping pill (the only rest I got from gasping for breath)…to finally sleeping pretty normally, after about 1 1/2 years–with just intermittent insomnia, which pretty much all people experience.

          What is in the chronic fatigue drip? I have not heard of that one. IT is also possible that yo are waking during the night and not aware of it (sleep apnea.) Has anyone told you that you snore loudly? Wake up with a headache? There are other symptoms but not sure of them.

          What is in the chronic fatigue drip? Have not heard of that one.

        • natdavauer December 3, 2018 at 5:46 pm

          I wake up like that every single day. Have for 2 years now. I sleep terribly because something is so wrong with my brain. Some of the worst things seem to happen spontaneously in the hours before waking. I feel like it’s GABA or brain stem problems.

        • Azz December 3, 2018 at 9:39 pm

          I’m with you on that one, horrible wake ups with dizziness, confusion and horrible eyesight and hand numbness being the norm followed by an entire night of nightmares.

        • Lukasz December 3, 2018 at 7:54 pm

          L,

          I think we ought to be careful with some of these supplements. Taking too many at once, which may be the case with me as well, can pose its’ own set of problems. I think I may have to cut back pretty soon to determine if one or more of these is the culprit for my recent sleeping problems and elevated agitation/anxiety which I have observed during the daytime as well. It may just be that I’m overdosed on a vitamin such as the B vitamin since that’s a major component of the Chronic Fatigue Drip. They said there’s other vitamins and minerals there as well, including some formula that is supposed to heal the adrenal glands. It’s all good and dandy but having too much of something can lead to problems and I’m wondering if this may be the case.

          Currently I’m taking Iodine, ATP Co-factors (B2/B3), Selenium, Vitamin C, D and E. Usually I feel very good after the first set of supplements but the PM ones seem to perhaps be overkill for me. I’m talking about Vitamin D and E. I could be wrong and focusing on the wrong supplements. I’m going to stop the CF drip and switch to the mood one to see if I can counteract this latest relapse. The mood drip is just amino acids so perhaps it can fight off this anxiety/agitation that’s occurred of late. If it can help with sleep also, that would be a huge blessing. I did do a sleep test awhile ago to determine if I had sleep apnea but I never collected my results from that clinic. No headaches when I wake up, just the massive confusion and agitation that I mentioned.

        • L December 3, 2018 at 10:57 pm

          yeah, I take all those plus several for mitochondria (mito q or ubiquinol, R-ALA, acetyl l carnitine, d – ribose, NAC. Also take a bunch of other stuff like turmeric, krill oil, msm, special vitamins for my eyes, b complex with B 5mthf (I’m a mutant!!) etc. I had been on iodine since my 1st integrative MD put me on it 2 years ago. My new integrative MD told me to take it just once a week. Still trying to figure out a schedule, but for four days I took NOTHING and it was nice. Didn’t notice anything one way or the other. I get most nervous about the D (don’t want to get sick!) and the eye vitamins since I have so many issues. I also think much of my damage was mitochondrial (even the macular degeneration) so it makes me nervous to stop all those too. But I DO like the idea of not spending so much money on supplements.

        • Lukasz December 3, 2018 at 8:14 pm

          Nat,

          Interesting that you also experience this phenomenon. Recently, I’ve come to know more about people who were poisoned by benzodiazepines (benzos) and they also experience these sensations upon walking up. Same goes with insomnia and many other symptoms that are similar to that of being poisoned by antibiotics. Anyway my point is that I’ve seen the words “GABA damage” being thrown around those circles and I think you may be right about our own struggles with this.

          The thing is, my sleep was improving until recently. I had too little energy during the day and now that’s no longer a problem (maybe due to the CF drip) but my sleep is suffering as a result. As I wrote to L above, in my case, it could be too much vitamin. Then again, I wouldn’t rule out GABA receptor damage or brain signaling issues for that matter. I’ve also noticed an increased pitch in my ears (tinnitus) which seems to change often. Electrical sounds which had previously improved.

          Do you also have this sound in your ears? I’m quite certain it’s being emitted by the brain but our ears exaggerate the sound. It’s especially bad in the later hours of the evening. I dread going to bed every night knowing that I’m going to wake up feeling beyond brutal. How do you cope with this?

        • Lukasz December 4, 2018 at 9:49 am

          Azz,

          So you experience these morning nightmares as well? Did this occur recently or have you had them since day 1 of taking the antibiotics? I swear it’s a new nightmare every night. I’ve had insomnia and unrefreshing sleep for the past 4 years but nothing like this.

        • Azz December 4, 2018 at 9:25 pm

          The nightmares started happening 6 months ago and it’s been unrelenting ever since, even if I sleep for 5 minutes it occurs. But the shocking wake ups have happened since day one, for some reason my eyesight and dizziness are particularly bad in the morning as well. I spoke to a naturalpath about supplements and he thinks the most effective and safe ones are those that have been taken for hundreds if not thousands of years and that strenuous exercise can be very beneficial in healing the brains neurotransmitters. So I’ve been trying it out lately and I think I have improved ever so slightly mentally but I’m feeling a lot of pain again physchially so it’s not exactly a win win scenario.

        • L December 4, 2018 at 10:30 pm

          I would be very careful of the strenuous exercise. This stuff attacks all connective tissue, whether it’s the vitreous in the eyes, the meniscus in the knees, the tendons or the skin. There are also supplements that are good depending on which problem you are experiencing. Anyone without knowledge of this poison really is at a disadvantage as far as suggesting treatments. I was “lucky” in that I ended up with an ND who had already treated a half dozen floxies.

        • Azz December 5, 2018 at 6:58 pm

          Wow your lucky on that front however I’ve invariably had a bad reaction to all the synthetically made conventional supplements I’ve tried whether it be NAC, B12, Glutathione, Vitamin C ect, with the exception only being ALA to date. On the physical symptoms I’ve made enormous headway since first being poisoned which is why I’m now confident to push myself if only in the desperation to fix myself phychologically.

        • Lukasz December 4, 2018 at 10:04 am

          L,

          It frustrates me that everyone seems to have a different protocol. One integrative MD is saying to take iodine daily and another is saying to take it once a week. Which one of them is right? There’s too much conflicting information out there. It’s even worse online as you know.

          Seeing as you felt no different when you were off all your supplements for 4 days, I wonder how much of this is placebo effect. Are these supplements really helping us or is it all just in our head? Like you said, it would be nice to not have to spend all of our money on them.

          I hate this illness.

        • L December 4, 2018 at 10:46 am

          well regarding the drs, I think perhaps early on I was thought to be deficient in the iodine and now the other dr just wants me on maintenance. I am not sure I would really feel any differently just going off of them. I take D because I don’t want to get sick and the some are for the post cipro macular degeneration, based on studies done. So I don’t know that I would actually feel anything by not taking them. I did notice though, a while back, that when I went off the mitoQ for a while, my energy fell.

          yeah, I cannot hate this enough….all this time I will never get back; all the things I have missed; all the money I have spent; all the terror I have been through. And I was in incredible shape before all this. It really sucks. You exercise, you eat right, you really take care of yourself, and then some irresponsible, thoughtless doctor, and some greedy corporation take all those years of good work and destroy it.

        • Lukasz December 5, 2018 at 2:31 pm

          Azz,

          Sorry to hear this. I really wish I could do something to help you. As someone who has tried nearly everything to reverse this situation, I am out of ideas as to what we need to do to get our health back.

          L,

          I see. I guess in the end it’s all a guessing game as to what we should be taking and what is unnecessary.

          I can fully relate to what you’re saying re: lost time, events, money, etc. It is depressing the hell out of me when I think about it. I just want all of us to regain our health but how to do this, I have no clue.

        • Azz December 5, 2018 at 7:25 pm

          Me too I wish there was a quick fast cure for everyone apart from taking that toxic poison in the first place. I still believe we will all recover though as everyone has made some sort of recovery so far who’s to say it won’t continue, we have to think this as to think otherwise is extemely depressing along with the general injustice of the whole thing.

        • Lukasz December 6, 2018 at 11:43 am

          Yup, what other alternative is there but to push forward? One day at a time, one hour at a time, one minute at a time.

        • Leah March 20, 2019 at 11:45 pm

          Hi Lukas can you give me some comfort . Your story resonates with me so much. I’m 13 months out and battling for my life and my two small kids. I was floxed by four pills of levaquin. The symptoms that still remain with me are depersonalization, derealization, brain fog . How long did it take for the depersonalization and derealization to pass ? That’s one of my scariest symptoms. Second I am sooooooo fragile . I lost a lot of weight and was already a small girl to begin with. I am so weak I can’t pick up my child. In addition I also wake up abruptly, and when I wake in the morning I feel like I’ve been hit by. A truck. Fatigued. Please help assist if you can. I’m in total despair .

  3. Lukasz December 6, 2018 at 10:10 pm Reply

    Antibiotics… gotta love them! Now I have intermittent sharp pain on my lower abdomen. Developed this a few days ago and I’m trying to find out what’s causing this. It seems to increase after eating. Drinking water has been helping alleviate the pain.

    After doing some research, I’m leaning towards Diverticulitis.

    • Azz December 10, 2018 at 6:29 pm Reply

      Hi Lukasz, have you had any luck going down the legal route? I haven’t had much luck here in Australia, which is surprising since there’s so much evidence for the damage this toxin does to the body.

      • Lukasz December 12, 2018 at 10:05 am Reply

        Nope. I’ve contacted lawyers in the past but none of them are willing to take on my case. Perhaps if I have a car accident or slip and fall…

        • Azz December 13, 2018 at 4:22 pm

          Me too I’ve been refused on every occasion, it’s almost impossible to sue these bastards. The injustice of the whole thing is very frustrating.

        • Lukasz December 14, 2018 at 1:01 pm

          It is. I don’t understand it.

        • L December 14, 2018 at 1:52 pm

          I can tell you what the problem is in the US and my guess is, it is like this other places as well, thanks to the stranglehold of AMA, big pharma and others with a monetary interest.

          In the US, according to public citizen something like 97 % or all medical malpractice victims will not be able to secure an attorney. There are two big reasons, at least as applies here. First, laws are created by, or with the help of medical big business and big pharma. They favor doctors, pharmacies, drug companies over the patient. They will include things like putting caps on damages, which in turn, make taking the case unattractive to the attorney. For example, in CA, the cap on pain and suffering is $250,000. Now while that might sound like a lot, in practice it is not. First off, an attorney can easily spend that in investigating and trying the case. Then you have to factor in that the attorney only gets around 1/3 of the judgement.

          Additionally, in most places, expert witnesses are required. And they are expensive! You end up with dueling witnesses, and the only ones who really come out ahead are the witnesses! But again, just another block to put in your way.

          The second deterrent is that these are hard cases to try, because of the causation issue. You have to prove that the drug caused the injuries. And while it is so damn obvious to all of us, and to our naturopaths, you now how hard it is to get a damn MD to say “yes, this is the cause of the injuries.” Either they are ignorant, or they are sticking together, because they know they could be the next one named in a lawsuit.

          Still, I would encourage people to file suit against the doctor, hospital, pharmacy (depending on the laws in your state/country.) It is an uphill battle, but not unwinnable. And often if you can just get someone to take you on, that can “play the game” with the defense attorney, many will settle before going to court because their reputation is too important.

        • Lukasz December 14, 2018 at 2:36 pm

          Thanks for sharing this info, L. After reading your post, I really don’t think most of us have a shot at being compensated for our pain and suffering. Like you state, too many factors working against us. I know at the end of your post you encourage us to do so anyway, but I just don’t think it’s even an option.

          The only exception I see is a class action lawsuit but I believe it’s also an uphill battle to provide adequate evidence and the settlements are probably not that high anyway.

        • L December 14, 2018 at 7:38 pm

          well the problem with class actions is a) they can go on for years and b) the ones who really make out are the attorneys, not the victims.

          I was so angry at what happened to me, and so out of my mind for many months..between the vision damage, the gasping for air, the mental side effects, the nightmarish olfactory nerve damage and the dozens of other side effects (seemed like a new one would crop up every month) that I was going to get at least one of the people responsible or die trying. And I was feeling near death, when I filed my own lawsuit. I was so sick I had to sit on the floor in line at the courthouse to file the complaint. I would not recommend anyone else do this. Even with paralegal training, I was so far over my head. I literally had to train myself to be an attorney as I went, writing and filing motions, and arguing them before the judge. I look back on what I did, and I am beyond amazed. That is all I am able to say about it…but I did eventually find a willing attorney, although it was so late in the game I just continued on, on my own. So I know they ARE out there. IT just takes a lot of perseverance.

        • Lukasz December 15, 2018 at 10:01 am

          I know you’re unable to say much about the outcome but I truly hope you were able to get some compensation, more importantly, a moral victory after having to go through all this. Even taking this person to court would have been a victory in itself for you after what you’d been through. But I do realize that you were in a harsh state when you had to take this on which makes it that much more heroic. All this reminds me of a movie I watched a while back called “Conviction” a 2010 film based on true events. Similar circumstances but the lady was fighting her brother’s wrongful murder conviction IIRC.

          Anyway, I don’t see myself ever getting justice for what was done to me. I had hope early on that I was going to find a lawyer but reality came knocking when all of them turned me down. I’m just going to try to live out the rest of my life the best way I can.

          It’s all I can do.

  4. Lukasz December 15, 2018 at 4:11 pm Reply

    Too late for us, but not for others. Spread Awareness.

    • L December 15, 2018 at 6:03 pm Reply

      Wow….Voltaire was ahead of his time!

      • Lukasz December 15, 2018 at 6:15 pm Reply

        Tell me about it. I guess not much has changed since the 17th century as far as medical field ignorance is concerned. Though the more I think about it, the more I’m convinced that it’s chosen ignorance. There’s far too much documentation and evidence to be able to claim ignorance at this point. It’s all about the money and job security.

        • L December 15, 2018 at 9:26 pm

          Agreed.

        • Azz December 16, 2018 at 12:43 am

          Blood money that’s all it is, I’ve basically been told it’s impossible to sue them even if I had substantial evidence and besides I would need at least 50K to get it started. It’s no wonder they have a free hand to poison the masses.

        • L December 16, 2018 at 11:06 am

          What country are you in? In the US medical malpractice is handled on a contingency basis, where the attorney only gets paid if he/she wins or settles, and then it is usually 33% (and if it does not settle and goes to court it generally goes up to 40%.)

        • Azz December 16, 2018 at 6:55 pm

          I’m from Australia, one firm mentioned a no win no fee charge but it wasn’t uniform, either way the case was rejected. This whole experience has left me bitter, bigpharmas greed has no bounds. How many other poisonous “medications” are they handing out to people.

        • L December 16, 2018 at 11:51 pm

          hudreds…or even thousands I am guessing. not sure how it is there, but here there is a constant stream of lawyer ads that begin “were you harmed by…(fill the in blank with a medication or device.) And medical malpractice is pretty specialized. Enough to keep a lot of hungry lawyers working

        • Lukasz December 16, 2018 at 9:53 am

          I’m pretty certain another BIG reason why lawyers are hesitant to take on medical negligence cases is because they have friends and acquaintances in the industry. Additionally, as is often the case, their spouse or partner works in the industry. It’s much more convenient to sue people who you won’t run into at 5-star restaurants, private events and golf courses.

  5. Lukasz December 16, 2018 at 10:00 am Reply

    L,

    I’m going in for a high-dose vitamin C (ascorbic acid) I.V. drip. Would you mind telling me what dose your integrative practitioner used and how safe this dose is? Should I combine it with anything else like glutathione or is it best just to have the high-dose vitamin C as it is? Also, how many sessions of HDVC did you undergo?

    • L December 16, 2018 at 11:56 am Reply

      MY main ND had me on 50,000 mg. I believe that is what he used for everyone. When I started getting them at my integrative MDs office, they had like 5 different levels (and each cost a different amount.) I told them I had already done 50,000 so that is what they put me on. I did always get a push of glutathione at the end with my ND, but I didn’t do it at the other doctors, only because they were already more expensive.

      I can’t remember how many I got total. I am sure at was at least 20-30. And if I felt like I was coming down with something now (and had the money) I wouldn’t hesitate to go in for one.

      I assume they did the g6pd blood test for this already?

      • Lukasz December 16, 2018 at 5:29 pm Reply

        50,000mg? Is that safe? I ask because most oral vitamin C supplements are 500mg or 1,000mg but 50,000mg is astronomical compared to these amounts. Any side effects that can occur from such high amounts? I’m not familiar with the g6pd blood test. What is it?

        • L December 16, 2018 at 5:44 pm

          Yes. That’s the whole point of it….being able to a) get it right into the blood stream where it won’t get destroyed by the digestive process and b) in therapeutic amounts you could never do orally. In treating cancers, I believe they go as high as 200,000 mg. (My integrative DR tops off at 100,000.)

          I am concerned though that your doctor is going ahead and doing it without the G6pd blood test. In the US it is required. There is a very tiny group of people who have a genetic disorder that prevents them from being able to do these IVs. I have gotten IVs from three different places now, and each one asked me for a copy of the test results before administering the IV. You can read more about it here. https://www.healthline.com/health/glucose-6-phosphate-dehydrogenase#purpose

        • tammy gyarmathy December 16, 2018 at 6:34 pm

          So from your comments here it looks like you’re still dealing with a lot of issues from the medication. What symptoms are remaining? When did your tendon, muscle, joint pain subside? Or has it?

        • Lukasz December 16, 2018 at 6:58 pm

          L,

          My apologies. Upon reviewing my blood test, this test was in fact ordered. I guess it came back negative since they opted to go ahead with the I.V.s. I’ve done 6 in total so far. 2 of ALA (Alpha Lipoic Acid), 2 of CFD (Chronic Fatigue Drip) and 2 of AA (Amino Acid). The only other drip I’ve had before was Myers’ Cocktail way back when all this was beginning to unfold and I didn’t have any negative reaction to that one either. I did however have a negative reaction to the Amino Acid drip which I’m trying to overturn with this HDVC drip.

          Did you observe any positive impact from those sessions, as far as reduction in your symptoms or overall health improvement?

        • Lukasz December 16, 2018 at 6:59 pm

          Tammy,

          Are you asking me or L?

      • Azz December 16, 2018 at 6:57 pm Reply

        Did you find the vit C helped you? I’m seriously thinking about doing it myself.

        • tammy gyarmathy December 16, 2018 at 8:48 pm

          Lukasz I’m asking you.

        • Lukasz December 17, 2018 at 9:34 am

          Yes, I’m still dealing with a lot of issues. The main issues right now are related to my digestion, mood, musculoskeletal problems and nerve damage. Those are the main complaints right now but there are other issues such as food and chemical allergies which make life very difficult. Various aches and pains here and there as well.

          The tendon, muscle and joint pain has improved of late. If I don’t trigger the pain with food I’m now allergic to, then the pain is under control. I think it was Vitamin D3 + K2 that took away the pain. Before I couldn’t move my toes for close to 4 years and now I’m able to move them with no issues. It was this or high spinach consumption.

        • tammy gyarmathy December 17, 2018 at 1:35 pm

          I am sorry to hear that you’re still dealing with so much…

        • Lukasz December 17, 2018 at 1:43 pm

          This agony will soon end. I’m close to my breaking point.

        • L December 17, 2018 at 4:26 pm

          well, I don’t like the sound of that…although I can empathize completely. I wish you could find someone where you live who has treated floxies. Mine quite literally saved me.

        • tammy gyarmathy December 17, 2018 at 2:00 pm

          What do you mean by that

        • Lukasz December 18, 2018 at 7:21 pm

          Quite frankly, I’m more than tired of this ordeal. Why stick around in a world where all is lost? There’s nothing left for me here. There really isn’t. Health, wiped out. Travels, wiped out. Hiking/climbing, wiped out. Future dreams, wiped out. What is left to live for? My family, sure, but they’ve all had a front row seat to my pain and suffering and even they have had enough of me. I can’t even stand myself since I don’t recognize who I am anymore. I can’t even read because it feels like the poison ate through my brain and when when I’m not dealing with neurological symptoms, I’m dealing with various pains throughout my body. This poison isn’t going anywhere. It’s lodged in my body for good. So what is there to live for? A future filled with daily pain and suffering?

        • L December 18, 2018 at 9:51 pm

          I get it. I was there. When I was at my worst and I felt like someone was holding a pillow over my face 24/7, really struggling for each breath, and I was also in excruciating pain, felt sicker than I had ever felt in my life, had major vision problems and everything in the world asphyxiated me…along with dozens of other side effects, I just wanted out. I spent day after day, week, after week researching, trying to find a way that would be certain, so I didn’t also end up paralyzed (or in the ER with more tubes of toxins coursing through my veins.) I even went online to see if I could find a hit man to take me out. An old boyfriend had committed suicide not long before and while everyone else was saying how horrible all it was, all I could think was, how lucky he was. So trust me. I get it.

          I am amazed some days I am still here. I really prayed for death for most of the first year. I saw no point..just pain, suffering, mental nightmares, and the inability to do the things I was passionate about. Well, the main thing that kept me alive was the fear of screwing up, and somehow (although it is SO hard to imagine) actually making it worse. I just was not able to think of a sure-fire way.

          Eventually, after about 60 IVs I was starting to feel hopeful. To date I have had over 100. And I have continued vision issues, tinnitus, peripheral neuropathy, pericardial effusion, phantom scents…..and as much as I wish I was back to my old self, I am really glad I never did end it. I am sick of dealing with all the issues, and sick of all the money I have spent and continue to spend (over $40,000)…but I can do some things I didn’t think I would be able to do again. In fact, just yesterday during a walk I have taken nearly every day for the last couple years—ever since I was actually ABLE to go for a walk again—I was thinking “wow. I remember shuffling along here, still not breathing normally, and wondering if I ever would. Now here I am actually jogging a bit on and off.” (especially miraculous since the torn mensiscus—but the prolozone injections have been great) Now I feel kind of the opposite of how I felt…like I have so much lost time I want to make up for.

          So it breaks my heart to hear you say this, all the while knowing so well how you feel. Not judging at all. Just wishing so much more for you. I so wish there was something I could do.

        • Azz December 18, 2018 at 10:12 pm

          I know your feeling exactly, but haven’t you improved in the last 4 years? I thought your depression had gotten substantially better? It’s my hope of improvement that keeps me going and that’s it.

        • Azz December 18, 2018 at 10:25 pm

          I think all the treatments you’ve tried recently has done more harm then good, better off going solo for a while I think. Whenever I try something new it backfires, recently I tried taking ALA and it’s given me a crushing headache for the last week. Most of all don’t give the bastards the satisfaction by giving in. keep on fighting the good fight till you finally recover. That’ll be the best revenge.

        • L December 18, 2018 at 11:19 pm

          It’s too bad the ALA was troublesome. It is one of the several supplements that is good for mitochondria health, and we all need to worry about that. They effect every cell in the body. The one you want is R-ALA. And of course a good brand. When I am on it, I do 800 mg 3 times a day. Other good mito supplements are coq10 (or ubiquinol if you are over 40), acetyl-l-carnitine, mag ( I use neruo mag L threonate by life extension), benfotiamine, d-ribose and all the bs.

        • Azz December 19, 2018 at 2:04 am

          Thanks for the info, I haven’t been able to find R-ALA as it was recently discontinued in the only brand in Australia that produced it. I may have to import it from America.

        • L December 19, 2018 at 9:23 am

          Not sure if they ship to Australia but the best prices are at vita cost.

        • natdavauer December 19, 2018 at 9:20 am

          Lukasz, hang in there. I’ve felt the same for much of the last 2 years. But there have been many changes and when it’s at it’s worst, I just say.. Make it 3 months and then see. Usually something has changed and the thing that was the worst problem has gotten a little better. Of course then there’s a new worst thing, but then I just say wait 3 months again.

          I also don’t have a very good support network but like you, I’ve seen a lot of the world and know there is horror and beauty out there everywhere. I guess it’s our turn to suffer some of the horror but that doesn’t mean we’ll never get do see the beauty again. We are in the valley of the shadow. We are crossing the sea of despair. We are in a prison of our own bodies. But none of those are permanent. We will leave the valley, cross the sea and be released from our prison some day. This too shall pass. There will be an end to this soon enough regardless but there is hope that things will get better. Hold on to hope and keep your eyes out to look for a horizon. Some day or boat will land on the shore and the journey will be over. That will be amazing.

        • L December 19, 2018 at 10:15 am

          So well put. And I love the 3 month idea.

  6. Lukasz December 20, 2018 at 6:15 pm Reply

    I just want to thank you all for the encouragement and words of wisdom. I was in a very dark place for a while there. I don’t know what happened but something set me back. I’m going to pay more attention to what the possible triggers are but at the same time, I don’t want to live in fear either. Perhaps I’ll need to make peace with the situation and focus my energy on the positive things that remain and not on what has been lost over the past 4 years. I know I can overcome this with time, I just need to learn to be more patient. I don’t want to die but I don’t want to live in despair either. I hope things will improve…

    Thanks again to you all for the kind words.

    • L December 20, 2018 at 8:26 pm Reply

      Glad to hear it was transient. I still have those moments too. I truly believe you will be able to do many of the things you love again one day.

      • Lukasz December 21, 2018 at 9:36 am Reply

        Hope so. I would hate for life to pass me by.

    • Azz December 21, 2018 at 6:41 am Reply

      Great to see your doing better! As you can see from my previous posts I’m frequently going through those episodes myself, a frequent source of exacerbation seems to be chemical hypersensitivities brought on by pretty much everything. It’s almost impossible to avoid completely, if not for my wife I think I would have chucked in the towel long ago and gone to live in the forest or something.

      • Lukasz December 21, 2018 at 9:41 am Reply

        Life in the forest might actually be very beneficial.

        • Lukasz December 21, 2018 at 9:55 am

          Certainty not practical but not a chemical to be found there. Only pristine O2.

        • Azz December 21, 2018 at 5:56 pm

          Yes that’s my thoughts exactly, as well as to get away from all the financial pressures ect by not having a job anymore.

        • L December 21, 2018 at 6:08 pm

          not to mention all the damn dirty electricity and emf radiation we are being exposed to. 5G will fry us.

        • Lukasz December 21, 2018 at 9:59 am

          Btw Azz, does your wife experience any of these chemical sensitivities or just you? I’m curious to know if other people living in the same household develop these intolerances or just those with compromised immune systems.

        • Azz December 21, 2018 at 5:58 pm

          No it’s only happened since taking that poison a year and a half ago. She doesn’t even notice most things that turn me into a dizzy depressed mess like dishwashing liquid and things.

        • L December 21, 2018 at 6:11 pm

          since I had the nightmarish olfactory damage, where everything asphyxiated me (I truly cannot describe just how horrific this was. IF someone had so much as a light hand lotion on, I would start choking) anyhow, I pretty much run everything through Environmental Working Group’s Skin Deep site. If you can’t find the actual item, you can search the ingredients. All my products are either scent free or use essential oils. If a product just says “fragrance,” leave it on the shelf. Synthetic fragrance rates 8 on a toxic scale of 10.

        • L December 21, 2018 at 6:23 pm

          hey, I think I saw both Cameron and the prosthetics maker on an episode of Storage Wars.

        • Lukasz December 22, 2018 at 10:00 am

          Azz,

          It would be liberating to get away from it all. That’s what I miss the most about travelling. The sense of freedom and liberation that comes with it. Feeling like a bird. I lived this type of life for a long time. I would work, save up all my money and just roam as much as I could for as long as I could. It was the best way of life I ever experienced. I even envisioned myself doing this for the rest of my life. I guess I just fell in love with this type of life and wanted to carry on doing this forever. But then this happened.

          Now I have accumulated debt and owe my parents money for the treatments I’ve been having. This will certainly set me back a long way. Then there is the fact that I’ve been unemployed close to a year now. Employers as you know always question gaps on the resume. I’ve had quite a few of those since I fell ill. Jobs are difficult to come by when you’re healthy as it is, nevermind when you’ve got a setback such as this. So I’ve been binge watching travel videos of people I’ve never met in the hopes that I can one day return to that type of life. It might be a distant dream, or it might be nothing but a pipe dream, but all I know is that this daily daydreaming is the only thing keeping me going. It’s why I’m still here.

          For you, it might be your wife that’s your lifeline, or your own goals and dreams for the future. Either way, we all have something to live for.

        • Azz December 22, 2018 at 6:26 pm

          Yes, it’s hard not to dwell on the horrible injustices we find ourselves we’ve experienced that’s for sure. I’ve also spent a considerable amount of my younger years travelling and working overseas and before this happened I was planning to go to Eastern Europe and like you I haven’t worked for a year now due to the smells working environment being impossible to cope with. I’m a welder by trade so unless I make a complete recovery I really have no idea what to do for the rest of my life, I’ve been a burden on my wife’s income she never complains but that’s the situation. Out of interest have you had your testosterone levels checked? Mine have been rather low since this started and I wonder if that has something to do with it, since T is a known to stop inflammation in its tracks among other things. Despite all this I’m glad I found this website to have support and give support to others in this nightmarish situation.

        • Lukasz December 22, 2018 at 10:20 am

          Azz,

          Re: reactions to chemicals/synthetics. I experienced this head-on and had to do a major intervention to stop this process as it was destroying my life and killing me slowly. What I did was I replaced every single bathroom and kitchen item that was non-natural and replaced them with natural substitutes. Basically, I got rid of just about everything that had scents, artificial crap and toxins in it. I’ve replaced them with hypoallergenic substitutes and that includes dishwashing liquid, laundry liquid, shaving cream and hair wax. I also use natural, fluoride-free toothpaste and natural, goat milk derived soap. If you’re having these types of chemical intolerances, it may be of benefit to make the change to natural products. I believe it’s our weakened immune system that is unable to cope with the chemicals.

        • Azz December 23, 2018 at 9:01 pm

          Thanks, I have already implemented most of what you mentioned. Have your sensitivities gotten less intense with time? After a year and a half it feels as bad as ever for me, today I’m dizzy simply by the smell of a plastic dog seat cover I put in my car. Living a life in fear and always being paranoid about what can exacerbate my condition is tiring to say the least. Another Christmas passes tmr let’s hope this time next year we’ve all made a full recovery! Merry Xmas!

        • L December 23, 2018 at 9:36 pm

          I’ll drink to that!

        • Lukasz December 22, 2018 at 10:57 am

          L,

          That’s right. Dirty electricity and EMF radiation are a huge concern. 5G Wi-Fi signals an even bigger one. BUT… the biggest one of all is one that I recently came to know about and found out that it was messing me up real bad. BLUE LIGHT EXPOSURE.

          My recent dark night of the soul was as a result of being overexposed to blue light. It was some angel from above that brought this to my attention. Since I cut out a lot of the blue light from my life, only a couple days ago, I’ve been feeling MUCH improved.

          My digestion and stools are better, my sleep has improved tremendously and finally, my mood has stabilized. My internet connection has always been via ethernet cable but my computer monitor and room lighting was turning me into an agitated, dejected man. I spend a lot of time on the computer as I work on projects and I never put two and two together to realize that maybe it was my surroundings that was making me ill. Now I realize that it was the emission of blue light that was causing a lot of my recent symptoms.

          You can read more about it here: https://fatiguetoflourish.com/fluorescent-and-led-lights-making-you-tired/

          In a nutshell, I installed f.lux, a blue light blocking program on my PC and replaced my indoor lighting with incandescent bulbs, the kind they invented in the early 1900’s, and this has alleviated a lot of neurological and physical problems. If you’re able to I would install f. lux on all your electronic devices. Your eyes and body will thank you and your biological clock will start to reset itself. The replacement of LED or CFL lights will also go a long way in helping alleviate symptoms. Our floxed bodies need all the help they can get.

        • L December 22, 2018 at 11:02 am

          Yeah, I found both my pc and phone have a filter built in you can turn on. I also have amber glasses that I use in the evening. And I have always used incandescent bulbs…even when they told us to stop using them here in the US! So insane. First they came up with the ones that contain mercury, which would be a mess to clean up if they broke…then then the LEDS. Nope.

        • Lukasz December 22, 2018 at 11:35 am

          Canada did the same in January 2014 and 2015. First they banned 75- and 100-watt bulbs, then a year later they banned 60- and 40-watt bulbs citing energy consumption. It’s all BS if you ask me.

        • Lukasz December 23, 2018 at 10:44 am

          Azz,

          I’m sorry to hear that your plans for Eastern Europe have been stalled. I hope you’re able to resume this plan as soon as you’re feeling well enough. Were you planning on moving there or going on a trip? natdavauer and I were discussing how difficult it is to have all your travels plans come to a full stop. He also has travelled extensively. It’s terrible not knowing if and when we’ll be able to get back on an airplane. I’ve spent the past 4 years looking up at the sky whenever an airplane flies over my head. All I can think about is my old life when that happens and it drives me to the bottom of the pits.

          Yep, I’ve had TSH, T3 and T4 checked. I think one of those came back a bit low so it was suggested to me that I take synthetic thyroid medication. I decided against the chemical option and opted for a natural solution instead in the form of Lugol’s iodine. Only took it for a week though and then I stopped it because I wanted to see if the drips I was having were making a difference. I’m going to start up iodine again soon but I might make the switch to the tablets instead. Iodine is suppose to help regulate the thyroid. I have to do a little more research on it but a lot of people swear by iodine.

    • L March 21, 2019 at 10:37 am Reply

      Tara, it became apparent to me that you were a fake poster a while ago. It is incredibly sad that someone has such a meaningless life that they would spend their time insulting and ridiculing people that have been so harmed and been through so much. Enjoy what you have. Get outside. Try to make friends. Don’t waste your precious time being cruel and offensive.

  7. Lukasz December 21, 2018 at 10:44 am Reply

    The story of Cameron Clapp. Inspiring beyond words.

    Going to keep him in mind from now on when the going gets tough.

  8. L December 22, 2018 at 11:03 am Reply

    oh, and the LEDs are also bad for your eyes

  9. Lukasz December 22, 2018 at 11:10 am Reply

    Another remarkable hero, Alex Lewis. Incredible story.

    Good bless this man for his courage and determination.

    • L December 22, 2018 at 12:07 pm Reply

      wow! “no matter what you come up against, just keep going.” That was astounding.

      • Lukasz December 22, 2018 at 5:18 pm Reply

        True champion.

  10. Lukasz December 23, 2018 at 10:34 pm Reply

    As usual I can’t reply to your post above so I’m replying here.

    Actually, yes, my chemical sensitivities have improved quite a bit. It was really bad for a long time. Similar to you, I struggled at work with these sensitivities and that was one of the reasons why I had to leave work behind. It was especially bad when I’d come in contact with carpeting, when I’d go into stores and pass by the aisles with chemicals or pretty much any residential or commercial property that had items that would release fumes or outgas. I wouldn’t say I’m in the clear with this, I still have to avoid essentially everything which contains moderate or strong chemicals, but the mild stuff is no longer an issue. I hope with time I’ll be able to tolerate the moderate stuff. I can definitely see the same relief coming your way. It might take some more time though.

    Merry Christmas to you also, Azz… and to L and Nat as well.

    • L December 24, 2018 at 10:42 am Reply

      OH yeah, stores are an issue. At my worst with the hyperosmia, where everything asphyxiated me, I couldn’t step foot in a store. Adding this olfactory damage to the breathing and choking issues, was just the icing on the black cake. My naturopath had a tiny coconut tealight candle on his reception desk. I could smell it when the elevator doors opened even though it was the equivalent of about a half block away. I was gaggin on the way to the doctors office one day because my driver had coffee in a sealed thermous! She had to get rid of it. IT was like I had this super power that I didn’t want. It would be like if you were waiting for an elevator, and when the door opened it was crammed with people, each one wearing the strongest, more grotesque perfumes and colognes imaginable. Of course, you would run the other way, only I had to get on and stay in there trapped with all of them. Or like being in a closet filled with open vats of bleach. I was so desperate, I was contacting specialists all over the world begging for help and asking if it would be permanent. (Had it been, I would no longer be here. There was no way to live like that. Couldn’t even go outside because the beautiful flower smells I normally loved were suddenly asphyxiating me.

      It slowly get better but like you I am left with sensitivities. Stores are still difficult…especially ones that carry things like candles or fragrances. (Environmental Working Group has a site called Skin Deep where you can check out how safe cosmetics and household cleaners are, either by name or ingredient. It lists synthetic fragrance as an 8 on a scale of 10 re toxicity. The cleaning/detergent aisle of the grocery store is really bad. Of course I still have light sensitivity too not only to the sun, but to fluorescent lighting, so that makes it doubly bad.

      Merry Christmas to you too….and wishing for a miraculously healthy new year for all of us.

      • Lukasz December 30, 2018 at 7:49 pm Reply

        Sounds like stuff nightmares are made of.

        • L December 30, 2018 at 8:31 pm

          Truly. Just really beyond description. IF you saw it in a movie, you would think “impossible. I don’t believe it.” Horrifying, terrifying, no words can describe how awful it was.

        • natdavauer December 30, 2018 at 9:29 pm

          What’s interesting with this is that it’s healing for me. Same level of distress with just the tiniest sound. Volume was not the problem. It’s simply the firing of the nerve at any level that’s sheer pain. Earplugs with headphones over them don’t matter because your auditory nerve still fires. And that’s the problem. Significantly better now but still a problem

          Makes me think it’s the nerve itself that’s hurt in some way. Inflammed? Demylenated? My nose is the opposite… Numb and tingling. Teeth feel like lead. Eyes are both too sensitive but also have blurry vision, pressurized, tons of floaters and pupils are always tiny. Weird thing is the eye stuff started 2 years after.

        • Azz January 5, 2019 at 5:39 am

          That’s the disheartening part, when you think you’ve reached the pinnacle of nasty symptoms something else comes along. I slept all day and night for the last one and a half years, now I find it hard to sleep at all. My eyesight has been bad since day one but strangely I can see things moving when they aren’t, like curtains or the floorboards…if that makes sense.

        • natdavauer January 5, 2019 at 9:09 am

          Brutal. Day to day living. Would love to have one normal night of sleep. Haven’t had one for 2.5 years. Have never had the too much sleep this whole time. Had always been can’t sleep for me.

        • Azz January 31, 2019 at 3:23 am

          Hi Lukasz how have you been lately? I noticed you mentioned that you have dairy intolerance now, could I ask what are your symptoms? I’ve been having pretty serious constipation lately I’m just wondering if it’s related

          Thanks

  11. Tomas January 9, 2019 at 2:33 am Reply

    Hello Lukasz,

    have you been tested for infections? Cpn, EBV, CMV, lyme and its coinfections like Bartonella, Babesia etc..

    That ATB poisons could disturb/shutdown your imune system and activate an infections which were hidden before. It also triger autoimunnity often.

    I know that ATBs are poison from the very first miligrams but there can be another culprit.

    Good test is also GSTT1, GSTM1 a GSTP1 gene mutations (xenobiotics and toxins detox)

    Just my suggestions to consider to try to move forward because it is my issue now (EBV + Lyme) reactivated.

    Wish you to return to full health! I would writte more but its going slow on narrow 18:9 phone :/ So later.

    Tomas

  12. CB January 30, 2019 at 3:48 pm Reply

    Hi, I posted on this page a while back. I just wanted to provide my thoughts on this condition and what I’ve tried.

    I’ve experimented quite a bit with probiotics:
    – Lactobacillus: Most strains make my legs burn, it is generally high in lactic acid and histamine so I’m now avoiding Lactobacillus.
    – Bacillus (Also known as soil based organisms): Seem to worsen my symptoms and B. Coaglans is a high histamine producer.
    – Bifidobacteria: There are 2 powerful B. Longum strains that I find beneficial in small doses, they are BB536 and Serenitas-1714. I read research that said Longum has antioxidant properties so maybe that’s why it helps. I cannot take much Longum otherwise it worsens some symptoms, possibly because it produces folate which I have problems with.

    I’ve experimented with multivitamins and nutrient supplements:
    – Activated B Complex: Seemed to worsen symptoms, I think the Methylfolate worsens a B12 deficiency.
    – Alive! Childrens Multivitamin: Seem to do okay with this one.
    – Cod Liver Oil: Seems to worsen oxidative stress, The Flox Report says as much.
    – Flaxseed Oil: I believe this has powerful benefits including Gamma-Tocopherol, Lignans and Omega 3. I think I saw improvements on it.
    – Mushrooms: I’ve only just started looking at these.
    – Ginger/Tumeric: Worsened symptoms, seem to trigger more oxidative stress.
    – Gamma Tocopherol (form of vitamin E): I had an antioxidant profile done with Biolab and it showed my gamma-tocopherol was severely deficient. I do wonder if this deficiency is why Cipro caused so many problems for me. I’ve ordered a supplement called “Jarrow Gamma E” that I will try in the coming days.
    – Bimuno Prebiotic (B-GOS): This seems to help sometimes, but not always.

    I’ve experimented with some Amino Acids:
    – Full Spectrum Amino Acid supplement: Caused body pain.
    – L-Lysine: Took this and felt very good for a day BUT then everything crashed, I’ve since read that Lysine triggers apoptosis in mitochondria and can be harmful if oxidative stress is present. Lysine is also a component of collagen and known to suppress the Herpes viruses.
    – L-Arginine: This is the amino acid that acts inversely to L-Lysine, it boosts Nitric Oxide. I haven’t taken it but I suspect it will produce a similar reaction to the Lysine.

    I’ve also experimented a bit with exercise:
    – I think 5-10 minutes on an exercise bike has been beneficial. I haven’t done it regularly enough to know for certain.

    In terms of understanding my condition, I think oxidative stress and nitro-oxidative stress are the causes of the ongoing damage. I have two different theories about where this oxidative stress comes from:
    1) There is a condition called “endotoxemia” where an overgrowth of bad bacteria in the gut produces too much oxidative stress for the body to handle.
    2) The standard theory that damaged mitochondrial membranes (from FQ use) produce oxidative stress.
    3) A combination of the two.

    So in summary, I’ve tried a load of things and haven’t found a magic bullet yet but I have some useful tools like the Longum probiotics. As I mentioned above, I will see what effect the Gamma-Tocopherol has on my symptoms, I’ve tested a lot of vitamins and that was the only deficient one, it just so happens to be an antioxidant used to fight Nitric Oxide free radicals. I am quite interested in 2 Floxiehope stories of James (the one holding the fish in his photo) and Mark (the elite cyclist), they both claim to have healed using exercise. There is research about people with mito dysfunction recovering after doing 5 or 6 months of exercise so I’ll definitely try and get on my exercise bike each day.

    Take care friends.

    • Nathaniel Davauer January 30, 2019 at 4:12 pm Reply

      Interesting. The fact that you’re seeing changes from probiotics means the gut is involved which is what I’ve always believed. I’m a big proponent of FMT. There’s no way IMO that you’ll be able to take some specific strains of this and that and capture the human microbiome. FMT is the only way. It’s all about diversity and they it works symbiotically. Even absorption of vitamins isn’t possible without certain chemicals that only are a biproducts of certain bacteria in our guts.

      Loose the bacteria > loose the reaction > loose the byproduct chemicals > loose the ability to absorb vitamins > loose the ability to synthesize many important things like tissues, neurotransmitters etc.

      • CB February 23, 2019 at 11:08 am Reply

        I remember you talking about your experience with FMT at the Taymount Clinic and I do think I need to have it done. I’m not able to tolerate magnesium and I worry about the effects of colonic irrigation during the FMT preparation so I have not yet committed.

        The people that recover from floxing describe how the symptoms just get better one day, almost instantly. Maybe the gut bacteria recover to the point where the gut lining is suddenly able to be repaired. I don’t think such people have recovered fully though and the slightest stress, medication or food poisoning could bring everything back.

        I agree with what you’re saying about the diversity of gut bacteria and that FMT is the way to cure this condition. Are you continuing with the FMT? It’s my understanding that some people need regular maintenance doses. Also, I wonder if the small intestine needs fixing, I think an FMT by enema doesn’t fix the small intestine.

        • natdavauer February 24, 2019 at 6:58 am

          I believe more as time goes on the lasting effects of abx toxicity are from dysbiosis. Maybe everything but it seems the acute phase is possibly direct damage and toxicity to parts of the body and then the altered microbiome causes long term problems.

          I am still focusing on that for myself. I suggest you join the fb fmt page as there’s lots of people there and you start to see patterns. Here’s a post I just added that addresses some current revelations for me..

          Wanted to post something interesting..

          I’ve been doing intermittent fasting and the strict carnivore diet for the last 2 weeks. I can’t deny the clear progress in all symptoms.

          I did a short fast a few weeks ago and felt better the day after. This convinced me that the food coming in was potentially fueling the problem. (It did always seem like I was hungry and felt worse and then I felt much better when I ate but then felt worse again shortly after eating. )
          Even though I always thought the carnivore diet sounded dumb I read enough stories of pos results. It’s not like a drug, so considering the theory that food (carbs and fiber mostly) could maybe be feeding the imbalanced biome, why not switch to ketosis and have zero carbs or fiber coming in. Worth a try.

          To my surprise, each day has been a little better. My worst symptoms come from what seems to be a pressure in my head affecting everything else. Cognition, ears, eyes, teeth, CNS, sleep, mood, even joint/muscle pain. The pressure seems to be relieved a little more with each day.
          Is it possible that the imbalanced biome is just constant being fed and kept flourishing by eating high fiber and carbs?

          I am in ketosis and feel fine. More energy actually because of the relief from symptoms. Luckily our body can switch to a whole different system that doesn’t need carbs. I’m just eating big piles of all meats with plenty of fat. (Loosing weight too which I don’t want to, but just shows the fat is indeed being used as an energy source rather than sugars). Good bugs need fiber but so do the bad ones. Removing it starves them all. I’ve done enough FMT that I’m confident (mostly) that I can try to put the good ones back.

          So the idea is to run this diet until everything starves to death and then give FMTs a much better shot at taking over the environment.
          Again, I didn’t expect this to help and can not deny how much it clearly has.

      • CB February 26, 2019 at 4:42 pm Reply

        Good luck with the diet. I’ll look into joining that Facebook group.

        I’ve just started taking Xylitol which is used to treat biofilms. Biofilms are like colonies of bad bacteria in a protective shell attached to sinus cavities, lung and gut linings. Xylitol is a “sugar alcohol” that supposedly disrupts the biofilms if taken 5 or more times a day for 6 months, I have noticed a difference after only 2 days. I take the Xylitol with a probiotic called Enterogermina (also called Normaflore) that is supposed to rebalance gut bacteria.

        These sugar alcohols seem to be quite powerful. There is one called Mannitol that is found in sweet potatoes, Parkinson’s disease sufferers take it and I think Parkinson’s and other degenerative disorders are to do with a bacterial overgrowth. I am also thinking that FMT is unable to eradicate the overgrowth of bad bacteria, perhaps because the bacteria are protected by biofilms.

        Before floxing, I would get bouts of sinus pain and congestion if I slept in a room that was too hot. I always thought it was a bacterial or fungal colony and it only happened in my left sinus which further supported this theory. I also had gut problems like severe lactose intolerance where a very specific area of my gut would become uncomfortable if I consumed lactose. When I took the Cipro, I secretly hoped that these two issues would be fixed but I guess it allowed them to grow and spread.

        I should also mention that I took flagyl a few years back and afterwards developed a skin rash that looked like Staphylococcus aureus. I’ve also read that antibiotics cause C. Difficile infections to occur by upsetting the balance in the gut so I will be pursuing this idea that the Cipro damaged has my defences and allowed a biofilm infection to spread.

        If I get any success, I’ll post a story on this site. 18 months floxed so far.

    • Ger April 13, 2019 at 12:04 pm Reply

      Hey CB, good review on the supplements you’ve been taking. You’re not the only one with those issues, I had the same problems with b complex and lysine too.

      I’m the exact same as you with probiotics that contain any acidophilus, it just completely destroys me and wipes me out, I can’t take it at all. I thought I’d never be able to take any probiotics at all, but I discovered one that lowers histamine levels and I’ve been taking it for a good few months now with no issues. Seeking Health Probiota HistaminX, it might be what you’re looking for, it’s mostly bifido based.

      • L April 13, 2019 at 12:14 pm Reply

        I’ve posted this before, but since you mentioned histamine issues, you might be interested in this blog. She has a lot of great information on histamine and mast cell issues. I just am pulling up one article but she also has others linking it to fungal infections, blood sugar levels, etc. https://alisonvickery.com.au/anti-histamine-foods/

  13. Jason Smith-batty February 9, 2019 at 2:24 am Reply

    I took clarithromycin 3 months ago and have had the worst time since
    The heart palpitations And pressure in.my head and ears still scare me
    How long did thr palpitations last for you and did they go .as these panic me and I feel lost

    • Azz February 9, 2019 at 6:20 am Reply

      I wouldn’t worry about the palpitations, I had a pretty severe case of it with even my wife feeling it through my fingers. It took about 3 months to go.

      • Jason Smith-batty February 14, 2019 at 12:32 pm Reply

        Cheers azz that makes me feel so much better 🙂
        I’m hating every moment since I have taken a full course of these but I will get there.
        Brain fog is annoying but not feeling so much derealisation now.

        Just getting loads of acupuncture to try and take some of this tention from my neck to ease the headache and blurry vision
        Did anyone experience tinnitus aswell.

        I hope u all recover well.
        I will never trust doctors again
        Cheers

        • L February 14, 2019 at 12:50 pm

          Yes I had/have tinnitus as well. IT’s weird because I didn’t notice it right away. I just remember sitting with a friend about a year in (and I had dozens of really horrific side effects so maybe this one was overshadowed) …but I remember asking her if she heard complete silence or like a kind of humming/buzzing, like the ambient noise you would hear in a film. She said “no, complete silence.” That’s what I thought, but I had to double check. I have been one who always loved complete silence, so this was really disappointing to say the least. I am 4 years out and still have it. But others have said theirs went away or at least diminished, so I wouldn’t go by me.

          It’s interesting because I remember several years ago someone had posted that they could hear the electricity in the walls. Since I had a super -accentuated sense of smell, to where all things asphyxiated me, it made sense that her hearing had become superhuman. In retrospect though, I think she probably had tinnitus and that is what she was hearing. Mine is not a ringing (only ocassionally) but a humming/buzzing/hissing sound.

        • Azz February 14, 2019 at 7:25 pm

          Yep had and still have all of that plus more, it did get slowly better until 10 months out of was going pretty well until I got refloxed somehow and then again 8 months later. I guess all there is to do is wait it out. I’m with you with Drs, I wouldn’t trust them to give me s glass of water now.

        • Jason smith February 15, 2019 at 4:29 am

          Just waiting out the anxiety and panic to go now then

        • Jason smith February 17, 2019 at 4:48 am

          What did you guys do to sort out the headache
          They have now become so intense I can hardly move
          Before they were dull and effected my dat but now I can’t do anything
          Hope you recover
          J

        • Sandy March 21, 2019 at 9:16 am

          Jason how long have you been floxed. How long you have depersonalization derealization for?

    • Ger April 12, 2019 at 1:22 pm Reply

      Jason, here’s my clarithromycin nightmare story. I’ve spoke to Lukasz over the years about this too. I got affected by it back in 2015 and I’m still in a very bad way with no improvements.
      I recently published my story about what happened on another health site here…

      https://www.hormonesmatter.com/nightmare-antidepressant-withdrawal-exacerbated-antibiotics/

      Horrible drugs, I’ll never take anything like this again. And Lukasz, hope you’re doing well too, it’s been a while.

      • L April 12, 2019 at 4:28 pm Reply

        Ger I had all your side effects and about 20 more. AND I was on antidepressants for years. I had actually gotten OFF antidepressants before the cipro, but it was given to me with prednisone, so I imagine that is why my body was so devastated head to toe.

        Prior to the cipro I decided I really wanted to NOT be on any medication, even though a therapist said I should stay on it for life. I went off…I think Effexor was the last one I was on…and had horrible electric zaps I my knees and head. I figured it was the Effexor, so I went back on, and weaned off. I did 1/2 then 1/4 and so on and took 6 weeks to do it and had no issues. While I was doing that I started on Turmeric (95% curcuminoids) because I had read the studies about it being as good (or better) than Prozac. And it worked! I had been off antidepressants for over a year before cipro hit. Then I was horribly depressed and suicidal but I never went back on, and it’s a good thing I didn’t.
        I’m with you…..no more toxins again

        • Ger April 13, 2019 at 3:03 am

          Hi L, I’ve been seeing a functional medicine doctor recently and he said my body / system was already weakened by Effexor and then when I took the clarithromycin it was the straw that broke the camels back and sent everything over the edge.

          I’ve spoke to and know a few people in my country that have been trying to get off Effexor for years, but can’t. That’s one thing I’m glad of, as much damage it’s caused, at least I’m not taking it anymore. I think with some of those anti d’s, you have to take them for life, because they’re so difficult to get off of.

          My body is a total mess now because of the Effexor and clarithromycin, I doubt I’ll ever be normal again because of it.

        • Azz April 13, 2019 at 4:29 am

          That may have caused my problems as well, I took anti depressants for 10 years before I realised I was far more depressed on them then I was without. The trick I found was to take Prozac when withdrawing as it has a very long half-life and hence no withdrawal symptoms. The few years before I took that cipro poison was the happiest of my life.

        • L April 13, 2019 at 11:18 am

          Don’t give up hope. Maybe once everything is finally out of the cells, you will see more improvement. What country are you in? Tell your friends they CAN get off the antidepressants—they just need to do it VERY slowly. Mine were capsules, and I ended up actually counting all the little beads inside and just bought some empty capsules and kept dividing the doses over 6 weeks. Also the turmeric was essential. And it not only works as well as antidepressants it has other health benefits as well, like anti-inflammatory (which is one reason I think it helps with depression. The “sales pitch” that antidepressants help balance some chemical imbalance is just that. A sales pitch. IT has NEVER been shown that that is what is going on with depression, and I have read that inflammation is one of the culprits. But again it needs to be a good quality turmeric that is 95% curcuminoids—that is what the studies were based on.

  14. Dan Jervis March 2, 2019 at 1:38 pm Reply

    Dear Lukasz, I am Dan Jervis, the last one on the long list. Would you please consider sharing your story to CBS 60 Minutes? 60m@cbs.news.com
    OUR STORIES NEED TO BE HEARD, Dan

    • Jason April 5, 2019 at 12:12 pm Reply

      Sandy
      I have had derealisation and DP
      For 5 months now
      Still suffering with terrible anxiety heart rate spikes as soon as I move 5 feet
      I feel like I’m tripping with walls moving and dizziness
      Terrible brain fog or feeling of not there
      Floaters and sparkels in vision
      And many pains throughout the body
      And God awful popping and tinnitus in my ears

      Hoping this to end

      • Nathaniel Davauer April 5, 2019 at 4:17 pm Reply

        One day at a time Jason. I had all of those things all day every day. I still have a bunch but the crazy anxiety and derealization seems to be over. Thank god. That was the stuff that makes you feel inhuman. I just woke up and said if my heart’s still beating then I’m still fighting. Just make that promise every day and every so slowly it goes away. Just stay away from Benzos/drugs to make it better.

        • Jason Smith April 19, 2019 at 2:08 pm

          Hi Nathaniel
          what did u take and how much
          How long did it last ?

          I’ve tried natural things and eating healthy
          But it doesn’t seem to shift
          What issues still remain
          Thanks for the reply in advance

        • natdavauer April 20, 2019 at 9:16 am

          I did a million supplements and none of them helped. Time has helped I think so that means mindset is important. Hope, mindfulness, spirituality etc may not heal in and of themselves, but they’re important to stay motivated as time goes by. I did FMT about a year ago and saw many improvements over the months that followed. Fatigue got better. Gained weight and strength. Mood improved. Still had a lot of heart issues and head pressure related issues. Joint pain. I’ve done more FMTs since and have been up and down. But in the last 6 months heart issues seem to have gone away. That gives me more energy. Sleep still sucks but it’s better than it was. Mood is still better and had been since the first FMTs. I think I’m making more seratonin in the gut and wasn’t before. Just a theory. At this point my worst issues are all stemming from my head. A pressure tire problem that I just can’t figure out seems to cause all my problems. Brain fog, neck problems, eye, ear, teeth, not, face pressure and numbness. Headaches, lightheadedness, dizziness. Still have joint pain that is up and down. It seems I can eat anything now and before had all kinds of reactions. I still believe our microbiome has been destroyed and so many things are wrong because of that. I also feel there’s physical, structural damage to the connective tissue in my head but clear scans mean that might not be true. I also have an arachnoid cyst in my head and feel that might be a wildcard that was affected by fq damage. All of this might just be healed by a lot of time and FMT and everything else didn’t do anything. It’s a horrible way to live but I’m still hoping there’s and end to the suffering. Hang in there.

        • Jason Smith April 21, 2019 at 3:36 am

          Nat
          I’m sorry too hear your still struggling
          But glad there is improvement

          I seem to be a little better during the day but still spaced out and not connected
          The tinnitus and hyperacuses and eye sparkels i believe are also related to my head pressure and stiff neck
          I have found massage for scm and sub occipital muscles to ease some problems without being too strenuous
          Stretching makes it worse tho
          I cant eat alot as it ends up hurting but some apple vinegar after food helps keep the small intestine clean from bad bacteria
          I have lost alot of muscle but seem to have put alot of weight on.

          My heart hurts most of the time but when moving races to about 150 just walking up the stairs.

          I’m constantly drinking water 1 to flush the system and 2 because I still have an awful taste in my mouth.

          The weird thoughts and random anxiety annoy me with the derealisation.

          I’m sleeping ok when I get tired but cant track time too well.
          But when I wake I always wake in a panic with heart racing does that ease ?

          I hope this nightmare for us all ends
          Thanks

  15. L March 21, 2019 at 10:23 am Reply

    Recovery does not necessarily mean 100%. In fact MANY will recover much but not necessarily all. This was a GREAT story post with lots of helpful information, and much that many can relate to. Additionally, he has been incredibly helpful to so many people, in taking the time and energy to share what has helped him as well as what has not worked for him. I think your comment is way out of line. I will also add that one of the things that is so wonderful about this site is the level of civility and kindness. I hope your post is removed.

  16. natdavauer March 21, 2019 at 10:43 am Reply

    Tara, you’re way out of line here. People are sick before floxing, during floxing and after floxing. People often suffer long term depression from floxing with many bouts of absolute desperation. What’s strange is you taking the time to read what is clearly an optional piece of information on the internet and then spend even more time commenting on it only to insult someone. If you find something you don’t like, simply move on. Internet 101. Sounds like you really need something else to focus on.

    There are many who think they’re getting better only to slip back into what can be years of suffering. That’s a common theme in floxing. Positive reinforcement is one of the best medicines in recovery and that’s what many do in the comment sections. You must be newly floxed to not be aware of those two things. So just stay quiet and learn for a while before you comment again. I hope you get better quickly and move on. But god forbid if you don’t or even if you do and then slip back, I hope people treat you better than you’re treating people here.

    • Jason Smith-batty May 7, 2019 at 6:24 am Reply

      Ger what are your current symptoms regarding clarithromycin and have you found magnesium helpful ?

      • Ger May 7, 2019 at 3:36 pm Reply

        Hi Jason, most symptoms I have now are…
        Brain fog
        Tinnitus
        Stomach issues
        Constant fatigue
        Back and joint pain.

        I’ve recently started back taking magnesium at nights to help me sleep, so I’ve been seen some sleep improvements. It’s not a high dose I’m taking now, working my way up. I was taking magnesium citrate before and it just upset my stomach and gave me a headache, so stopped taking it. Somebody told me to try magnesium bisglycinate and it seems to work fine for me so far, no same bad side effects as I had with mag citrate. I need to increase the dose to see if it helps any of my other symptoms.
        But like I said, in the link to my story that I posted, I’ve not had much luck at all with any treatment or supplements so farm I still feel as bad as ever. Coming up to 4 years now like this.

        • natdavauer May 7, 2019 at 5:37 pm

          Have you considered FMT? Esp if there’s still stomach issues, the other symptoms could also be from dysbiosis. Many people who aren’t floxed but have post abx chronic illness suffer from those things too. It’s pouring your microbiome needs a hard reset. For me personally, it’s been the biggest factor in improvement. If course it might just be time, but probably both. The microbiome needs months after every alteration to establish.

        • Ger May 9, 2019 at 5:57 am

          Hey Nat. My stomach issues started about a year before the Clarithromycin incident. They’re caused by the withdrawal effects from the antidepressant (Effexor) I was talking at the time. It was when I took the antibiotic things got a thousand times worse, and ended up with sibo. So my original gut issues are likely serotonin based and then it’s now a combo of that and dysbiosis from the antibiotic.
          I’ve been trying to take care of that part over the last few years, and when I had a stool test a year ago there wasn’t too much badness going on, low in bifido bacteria, so I’m taking a probiotic to sort that out.

          In a nutshell, the Effexor did a number on my system and the antibiotic was the straw that broke the camels back.
          Don’t know if you seen it already, but my whole story is up on Lisa’s from here friends website…
          https://www.hormonesmatter.com/nightmare-antidepressant-withdrawal-exacerbated-antibiotics/

        • L May 9, 2019 at 9:52 am

          Interesting. I had been on antidepressants for decades, and once when I tried to get off Paxil, I got the zaps, both in my head and in my knees. They would literally buckle. I went back on and then WEANED off, even down to dividing individual capsules, and went off that way with no problems (and went on trumeric with 95% curcuminoids). That was a year before the Cipro nightmare. Hard to imagine it could have been any worse than it was! I lost 1/4 of my body weight in 2 weeks and my gut was just destroyed….

  17. Lukasz June 1, 2019 at 8:37 pm Reply

    Also, does anyone have Teri CiproVictim’s e-mail? I know she’s on FB but I need to reach out to her by e-mail.

  18. Lukasz June 1, 2019 at 8:50 pm Reply

    June 2019 Health Update:

    • Azz June 2, 2019 at 4:51 am Reply

      That was really heartbreaking, and as your symptoms mirrors my own almost to a fault depressing. It’s been 2 years like this for me now and I was really holding your recovery as hope for my situation, depression is also shocking for me on a daily basis while some other things have improved like the dizziness and nightmares ect. I was also better a year ago and I’m dumbfounded why we can’t recover like so many others seem to have. Some good news though, my wife is pregnant but on the flip side I worry how I will be able to cope with bringing up a child as well as the perpetual money problems I now face. Keep in touch please it’s valuable to not feel alone in this. Best wishes.

      Also please try Alpha Lipoic Acid I find it really helps pick up the mood somewhat

      • Lukasz June 2, 2019 at 3:00 pm Reply

        I’m really glad to hear that the dizziness and nightmares have subsided. I know how much those two side effects were bothering you so I’m extremely happy to learn that they’re currently under control. Have you seen improvements in any other areas or just these two? As for other people recovering before us, I think there’s many factors to consider including doses and amounts taken, their ability to detox, life stressors and things of this sort. Each person is going to have varying degrees of damage so we have to keep this in mind.

        That’s great news! Congrats to you and your wife! I’m sure you’ll do great as a dad. Also, I’m sure it will make you forget some of the daily pain since you’ll be busy with taking care of the little one. As for the financial situation, I’m sure Higher Forces will assist you with that. Things of this nature often times shift towards a resolution. For the time being, hard as it is, try to focus only on the positive aspects of becoming a dad. Everything else will resolve.

        Thanks for the tip re: ALA.
        It’s great to hear from you.

        • Azz June 3, 2019 at 11:13 pm

          I’m sorry to hear about your troubles, 4 years and 7 months is too long to put up with this nightmare. Do you consider the current time as a setback or has it been consistent for the last 6 months? The dizziness and nightmares seemed to have improved for me to almost non existent for about a month then it recently came back and is quite bad today, I always wonder is it triggered by something or just something that would have happened anyway. It definatley goes through cycles for me with pretty much two levels being unbearable and bearable. I consider bearable being a good day but after over 2 years I’m still FAR from being normal. I think I could put up with almost any symptom if only depression didn’t follow suit. Like you I have no intention to give up wishing for the day I can see the magic in life again. By the way did you take the ALA and did you find it made a difference? But I think it all must be reversible otherwise it wouldn’t go up and down all the time, you’ll get better, it will just take longer then most hang in there!

        • mmec7 June 4, 2019 at 4:37 am

          Quote : “[…] recently came back and is quite bad today, I always wonder is it triggered by something […]”
          Could the variations be triggered by something you ate, like antibiotics in meat ? Or even Roundup / Glyphosate, or GMO foods ? Another possibility, the sprays they use to give extended shelf life to foods – strawberries and other such soft fruits being case in point.
          Try organic food and if a meat eater, ditto organic and if a beef eater, only meat from grass fed livestock. See if that helps.
          Take care.

        • Lukasz June 4, 2019 at 12:40 pm

          Azz,

          THANKS for your empathy and support. It’s refreshing to see that some people still have compassion in this increasingly cold, cruel world. You and my brother are the last people to give a damn, so thank you for your kindness.

          While it’s true that I’ve been in the depths of hell for a long time, I’m still hopeful that salvation will come at some point. I just need to keep it together and get through this darkness.

          I would say that I’ve been in bad shape for all 6 months with each day being more or less the same as the previous one. I call it Groundhog Day. This tells me that I need to make a better effort to find the right supplements since I had been mostly off of all supplements. It’s clear that my body and mind are in a state of decline and so I need to get back on a few supplements to steady the ship.

          My worst side effects at present are daily insomnia, indigestion, malabsorption, weakness, visual and auditory problems, and the usual physical and mental symptoms. How about yourself? Which symptoms are troubling you these days?

          I had a short period with bad nightmares and so I understand how brutal that can be. I’m also quite dizzy everyday (vertigo-type dizziness) so I sympathize with you on that side effect as well. And yes, the depression and anxiety on top makes all this hell on Earth. I wish I had some answers for you but I don’t know if it’s triggered by anything or simply a part of this ordeal. Most likely, it’s part of the deal. It’s funny you say that, as I also consider bearable days, my good days. Unfortunately, these types of days are few and far between.

          No I haven’t taken ALA recently. The only time I took it was intravenously a while back when I was doing the 10 pass ozone sessions and the various other IV drips. I felt even worse back then so I’ve decided to never do IVs again. I don’t mind trying oral ALA if it helps me to cope better. What dose are you taking? Are you on any other supplements? Also, do you have any experience with anti-depressants or anti-anxiety medication?

          Thanks man. I’ll try to hang on a little longer. Sending good vibes your way.

        • Lukasz June 4, 2019 at 8:10 pm

          mmec7 is spot on. The food we eat is contaminated. It’s laced with all kinds of poisons that are meant to flare-up symptoms from antibiotic-induced toxicity. Just try to eat anything that you used to be able to eat prior to getting floxed and there’s a good chance you’ll react fairly quickly. I’m talking about 80 to 90% of the standard diet. The exception seems to be organic, non-gmo foods. The chances of a flare-up or inflammation occurring with organic, non-gmo foods are small but it’ll leave a mark on your wallet. Also, let’s be honest, not everyone wants to eat plant food, fruits and vegetables for the rest of their life. Quite frankly, this type of life is only for the strong willed. For the rest of us, it’s a constant struggle. The makers of these drugs knew exactly what they were doing when they were putting these drugs together in the lab.

          Two words:
          BLOOD MONEY

        • Azz June 4, 2019 at 8:47 pm

          Blood money indeed, it’s such a tragedy we got caught up in it, I wish everyday I could go back in time and not take that horrible poison. It’s left me feeling contempt for the whole medical establishment really, did you know the generic box of Cipro I got didn’t even have a list of the side effects! It’s no wonder without any warnings from anyone I felt free to take neurofen at the same time without knowing the disaster it’s creating.

          The worst symptom I’d say is depression followed by dizziness, brain fog, a sense of impending doom, nightmares, tinnitus, blurring vision with the inability to focus and many others…I’ve also noticed an inability to socialise, it goes without saying whatever this has done to our brains it’s been SEVERE. I often worry my wife thinks this isn’t the man I married.

          Outside of this site I’ve had no support from anyone but my wife and I can tell after 2 years she’s extremely bored of it, my family are virtually a non entity without anyone even bothering to call for the last 2 years so I know the feeling.

          I’ve been eating exclusively organic meat and some organic vegetables but there’s really not all that much to choose from with the other vegetables being low in pesticides such as broccoli, and I haven’t used deodorant or moisturiser or any other commercial product either which begs the question what sets off these constant setbacks.

          I haven’t thought about anti depressants or anti anxiety meds as I’m sure these as well come with horrible side effects, I recently read in the paper that anti depressants shrink the blood vessels in your neck! I’m sure if I had never taken anything a quack has given me I would be an entirely healthy and happy person.

          I take 600mg of ALA and it’s the only thing I’ve tried that only brings a positive outcome, though I worry it could be harmful as well so I only take it when I’m really suffering.

          Thinking this will be lifelong is absolutely soul destroying, I really do beleive we will see the magic in life Despite it currently feeling like Groundhog Day. It’s great to see you come on again and I hope we can stay in contact more often as it’s horrible to go through this alone.

          Sending prayers your way

        • Lukasz June 5, 2019 at 11:53 am

          None of us could see this coming. We would have to experience a premonition in order to have seen this coming but very few people have such powerful instincts. I too live with regret but when I think really deeply about this whole mess, I come to the realization that it was my destiny to go through this difficult ordeal. That there was no stopping this from occurring. Perhaps it was your destiny too. These days, I tell myself that this is the Hero’s Journey I’m experiencing. Look up Joseph Campbell (1904-1987). You’ll see what I mean if you get to know him and his works. He was one heck of a wise man. On the subject, Alan Watts (1915-1973) was another incredible man. If there’s an afterlife, I’d love to meet them both. Hopefully, with a competent mind (assuming that we even have a mind in the spiritual realm, who really knows?)

          Sorry to hear about all these symptoms you’re experiencing. I can totally relate to them all. It is, indeed, severe. Just remember though, states change. Everything changes. I know you and I have been in this state for a long time but I’m convinced that there’s something in this world that can help us get most of our health back. We’ve just got to find it. As for your concern re: your wife’s thoughts, perhaps she realizes that this is not your fault and that this could have happened to anybody.

          I’m sorry to hear about your family. I have a similar issue and as I stated earlier, only my brother can be counted on. The rest of my family have treated me poorly with an astonishing lack of compassion and empathy. It makes me even more depressed to be honest but at least I know who’s in my corner of the ring. Additionally, I have also lost some friends to this with them cutting off contact with me. It’s a shame really. It’s all part of adversary though. We’re going to rebound from this and meet new people.

          Setbacks are probably due to the poison circulating throughout the body. Remember, antibiotics can remain in the body for years, if not decades. One source estimated that antibiotics can remain for 7 years, but I’ve seen mention of 10 years or more. It all depends where the molecules (groups of atoms) and chemicals are lodged. I’m willing to bet that they’re mostly lodged in our tissues, but not only there, our organs and blood stream too. They move around freely and that’s why we sometimes feel better and other times like death. Traces of antibiotics, pesticides, herbicides, GMOs and other modern day poisons simply add to the toxic burden. I’m no expert but I’ve done plenty of research to come to this conclusion. Pharma scum, not surprisingly, would likely disagree.

        • L June 5, 2019 at 12:36 pm

          Wow. Joseph Campbell. Haven’t heard that name in years! I used to read his books and watched his interviews with Bill Moyers. Thanks for the reminder. I am so sorry you have lost support from family members. I am not close to mine and when I do see them I think they primarily just “tolerate” it. It is so difficult to understand what we go through, especially when we look so normal on the outside. I wish for you (and for us all) a full recovery…or enough to enjoy life without thinking about this poison all the time. And soon!

        • Lukasz June 5, 2019 at 12:17 pm

          Sorry, forgot to reply to the rest of your post.

          Re: anti depressants and anti anxiety meds, I was asking because the quacks have been offering to put me on their favorite chemicals. So far I’ve been offered two different anti depressants by two different quacks. I’ve said no to both but wanted to see if you had any experience with these things. Truthfully, I’d rather die than be exposed to another potent drug. Thanks for informing me regarding the shrinkage of blood vessels. That’s scary shit and is another reason to avoid them.

          Thanks for the dosage info. Do you take 600mg at once (one capsule) or take several throughout the day (multiple doses)? Do you take it with food or on an empty stomach?

          I sure as heck hope this isn’t a lifetime affliction. I don’t know how much longer I can cope with these side effects. I’m mainly holding out hope that there’s a supplement with my name on it that’ll bring me relief from this horrible suffering. Should I not find it, I fear the worst. In the meantime, I’ll continue the search.

          Good to catch up with you as well.

        • L June 5, 2019 at 12:39 pm

          Antidepressants have been shown to be no better than a placebo, and yes, like other drugs they have their share of side effects. The first time I tried to go off them I had electrical like zaps in my brain and knees. I had to go back on, and slowly wean off, to avoid that. Then there is also the problem of FLUORIDE in many of them.

        • Lukasz June 5, 2019 at 4:11 pm

          L,

          It’s great to see your presence again. I was wondering if you were still around. Now I know. How are you doing these days? Improved or no?

          Yes, Joseph Campbell is a legend. Like you, I’ve read some of his books like “The Power of Myth” and “The Hero with a Thousand Faces”. I also have the DVD series with Bill Moyers. It’s incredibly fascinating to watch these two men speak. So much intellect between them. Very few people could interpret life the way Joseph Campbell could. I think Alan Watts comes the closest.

          Thanks L. It’s very unfortunate that our own family members aren’t as empathetic as we’d like. I completely understand their frustration, it’s difficult on them, but we need them on our side. Giving us grief and additional stress isn’t helping their case or our own. Like you said, they have a hard time understanding what we are going through simply because we APPEAR normal.

          Since you were on antidepressants for a long time, would you say they helped you in any shape or form? Would you recommend them to anybody else or do you think they do more harm than good? The electrical zaps to the brain and knees sound pretty scary. I know some of the side effects can be downright brutal. So is there any advantage to actually taking them or not really?

          Thanks for the wishes.
          I wish the same for you.

        • L June 5, 2019 at 5:11 pm

          I just replied to another post with my health update. Basically hanging in there. As for the antidepressants, I would recommend Turmeric (95% curcuminoid) instead. That was shown in studies to be as good as (better than?) Prozac.

          I was on antidepressants for decades…several different kinds. My doctor kept telling me I HAD to be on them. But I wonder how much they impacted my health. When I decided I just wanted to stop, I went on turmeric and was doing fine…til the cipro hit me. Still, in spite of what I can only call sheer terror daily for months as I gasped for every single breath, and became this shuffling, blinded, pathetic, suicidal creature, I refused to go back on antidepressants…esp knowing that the turmeric worked just as well. Even on antidepressants, I can’t say that I felt “good.” It was like instead of everything being black, it was grey. So, no, I would not recommend them. I think a big part of them working is the placebo effect, because the selling point is that they help with a chemical imbalance. But it has never actually been proven that that is what causes depression. Here is an interesting piece on the subject https://jayfeldmanwellness.com/is-depression-really-caused-by-a-chemical-imbalance/

        • Lukasz June 5, 2019 at 4:18 pm

          Here’s a good explanation of the Hero’s Journey which Joseph Campbell talked about.

        • Lukasz June 5, 2019 at 8:02 pm

          L,

          Sorry to hear. I was hoping things were on the up with you. Have you been trying any new supplements, treatments and/or therapies? What’s your next move at this point?

          Clearly you’ve been through hell and back in your life. I don’t think I could ever find the strength to fight the darkness as long as you have (decades). It astonishes me how much willpower you have.

          Thanks for your views on antidepressants. I appreciate the feedback. So seeing as antibiotics wipe out everything in our gut, including serotonin, wouldn’t SSRIs help to restore serotonin? I feel like the antibiotics have wiped out not only our good (beneficial) flora, but also all the serotonin and melatonin a lot of which is found and formed in the gut. If this is the case, then our depression and anxiety would likely be due to lack of serotonin. But then if you’re saying you took antidepressants for decades and they never really did much for your mood, then this doesn’t hold much water. It would seem they weren’t doing anything beneficial, at least not in your body.

          I would only consider them for the serotonin restoration but if they’re going to cause more harm than good, I’d rather not touch them. Everything is so damn complicated.

        • L June 5, 2019 at 8:36 pm

          well I have just been dealing with the flq toxicity for 4 years and three months (but who’s counting? 🙂 ) Actually what I went through with the cipro was 100 times worse than any depression I experienced before. And the depression was not constant. It came in waves. I had a lot of good times as well.

          I agree re the link to the gut…not just to depression but to virtually every disease. So I would focus on healing the gut. Since you mentioned serotonin, I think I would try something like L-tryptophan rather than an antidepressant. https://healthfully.com/260230-l-tryptophan-anxiety.html

          I think I mentioned in my other post that the next step for me is to try a 3 day fast. It is supposed to reset your immune system. I don’t know if the current issues I am having are immune-related, but I think this is worth a shot. It is ALSO supposed to help reset the gut as well. I have been doing a bit of intermittent fasting (15-16 hours) but this will be a real challenge.

          I would LOVE to cut down on the number of supplements I am taking. So expensive and I just don’t like taking so many. I take them mostly for my vision, my mitochondria and nerve damage.

        • Azz June 6, 2019 at 2:52 am

          Hi L how is your depression these days? Has it lifted substantially from your worst? I’ve been having a tough time with it lately, I would have thought after 2 years it would have improved more then it has.

        • L June 6, 2019 at 8:34 am

          Considering I am still dealing with issues effecting my breathing, and that many nights I am up until 3 or 4 am because of breathing problems, and it is still preventing me from returning to my normal life, it is remarkably good. I think perhaps that is another indication that diet is playing a crucial role. I always ate fairly healthfully before the cipro, but I have cut out most processed foods and eat way more greens than before. And rarely have gluten, whereas before I routinely had sandwiches for lunch. I even have not been consistent with staying on the turmeric, and yet mentally I am much better than I was before all this, and on antidepressants! Of course the first year post cipro was hellish mentally and physically, and I cannot compare it to anything in my life before. I was not just suicidal but paranoid and had “jump out of your skin” anxiety for almost the entire year. So since I am still dealing with health issues, I would say the level of depression is pretty good. More pissed than depressed.

        • Lukasz June 5, 2019 at 8:25 pm

          Just finished reading the article you posted. Think I’ll be skipping antidepressants.

        • Lukasz June 6, 2019 at 10:30 am

          L,

          My apologies. I forgot that you’re on the same timeline as me when it comes to Cipro.

          Thanks for letting me know about L-tryptophan. I may have tried a supplement in the past that contained this amino acid. Actually, it may have been in a whey powder that I bought a while back. I don’t recall if I tried the supplement on its own. Have you tried it on its own? Besides probiotics, is there anything else I should be using to repair my gut?

          I’ve heard the same about the fasting. Apparently, if you extend the fast to 5 days, it’s suppose to regenerate injured and dead cells. I read that this happens only on days 4 and 5 of the fast. Personally, I don’t think I could go that long without eating but I’m sure there’s people that can do it. Let me know how it goes if you end up going through with it.

          Do you know how much CoQ10 we should be taking daily? I mean the daily dosage.

        • L June 6, 2019 at 11:45 am

          I have not taken l-tryptophan (unless you count thanksgiving dinners.) As for the gut, fermented foods are good UNLESS you have mast cell disorder. Even though I avoid dairy, I have had goats milk kefir. I also have coconut based kefirs and yogurts. Kim chee is good and saur kraut (not the kind you get in cans.)

          As for the coq10, I have read that one should start out at 200-300 mg a day and then down to a maintenance of 100. I take mito q so I just used the two caps a day as recommended. The only thing I do know for sure is that if you are over 40 you definitely want to take the ubiquinol form, because your body has a more difficult time converting the coq10 into a usable form.

          I have read several studies/articles now saying that the immune system can reset on a 3 day fast, including getting rid of dead cells. Also, a 3 day fast is the longest that is recommended to do on your own without supervision. If I had the money I would go to a referred center and do it for a week. (You actually stay 10 days because breaking the fast is just as important.) It’s gonna be tough! I have done intermittent fasting of like 18 hours and even that was hard. But I am desperate, so I hope the desperation will see me through.

        • Azz June 6, 2019 at 6:23 pm

          I now have lactose intolerance thanks to that poison so I now can’t eat dairy either, I’m glad your depression has improved so there’s hope after all. It’s seems as if certain things trigger breathing issues for you but for me it triggers dizziness. Would you say your depression was mostly improved 2 years out? I’ve also been fasting in the hope it could heal my gut because I know from blood tests I’m deficient in many vitamins like iron and b12.

        • L June 6, 2019 at 6:47 pm

          It’s kind of hard to remember exactly when the depression went, because as I said I had SO much mental stuff going on. I was suicidal, but I don’t know if it was because that is a side effect, or because I had such nightmarish things going on—the gasping for air, the vision issues, excruciating pain, horrific olfactory nerve damage, the sudden large weight loss, and dozens of other things. Either way, in addition to that I also had just mind boggling anxiety—like if someone was holding a gun to your head for months at a time. Then there was also paranoia. Just SO much going on mentally. If I had to guess, I would say maybe around the 1 1/2 year mark? It’s hard to remember. I did, at some point, go back on the turmeric.

        • Lukasz June 6, 2019 at 10:33 am

          Sorry, I meant to say that new cells are supposed to be formed in place of the injured and dead ones.

        • Lukasz June 6, 2019 at 5:28 pm

          Maybe we need to eat turkey dinners everyday for the rest of our lives? That might solve our serotonin issues. lol

          I have had those fermented foods but never ate them long enough to see results. I should get back on them but this time, eat them daily and for weeks or months at a time. I haven’t seen goats milk or coconut based kefir or yogurt. I’ve had goats milk for a long time and have seen goats milk yogurt one time but never the other ones.

          Thanks for the info re: CoQ10. How long should one remain on 200-300mg before scaling down to 100mg? For someone who’s currently 38, is CoQ10 still fine to use?

          So 3 days is plenty enough then for unsupervised fasting. Good to know. Like I said, I’m curious to know how it goes for you. If it works for you, I might give it a try myself.

        • L June 6, 2019 at 6:41 pm

          I’m not sure how long to stay at that dose before going back down. And since you are under 40 the coq10 should be used by your body fine (which is good—it’ cheaper!).

          So I just got back from ENT number 4 who thinks my issues are being caused by environmental allergies like pesticides, so even though I was tested and am on sublingual allergy drops, they wouldn’t contain the stuff I am reacting to. Ugh. I am up to 3 or 4 every night because my lungs feel stuck together, and my throat feels like I am choking. So the fix? STEROID nasal sprays. Great. Steroids. I purposely stopped my asthma steroids, and now this. I am too afraid to ever take a steroid again. There is a procedure to freeze the nerves in the nose so they aren’t as reactive, but that doesn’t sound appealing either. And its success rate is 75%. I am SO hoping this fast does something. May not be long enough to tackle this. We shall see.

        • Azz June 6, 2019 at 7:11 pm

          Have you tried nasal sinus rinsing? It’s been shown to be more effective then steroids and it’s safe.

        • L June 6, 2019 at 7:49 pm

          I do it several times a day. I have an entire 8 1/2 x 11 page of things that I have tried. 😦

        • Lukasz June 7, 2019 at 7:56 am

          Great, I’ll begin with the CoQ10 at 200mg for a while and then scale down to 100mg as per your recommendation.

          Sorry to hear that. I completely understand your unwillingness to use any steroid product. That’s something I’ve been avoiding myself. I haven’t touched a single NSAID or any steroid product since the ordeal began and intend to keep it that way.

          I’ll keep my fingers crossed that the three day fast does some wonders for you. There’s only one way to find out.

  19. Lukasz June 5, 2019 at 4:24 pm Reply

    Another video on YouTube that has a similar message to the one above is called “A Course In Miracles – The Hero Of The Dream”.

    • Azz June 6, 2019 at 11:19 pm Reply

      Lukasz have you heard about Benzo withdrawal? I beleive our brains suffered severe GABA receptor damage since our symptoms seem to mirror this syndrome. And exercise is supposedly a faster way to heal it, so I’ve started swimming 3km a day in the hope it improves faster. Worth considering anyway.

      • Lukasz June 7, 2019 at 2:44 pm Reply

        I have. There’s a channel on YouTube called Benzo Brains which is devoted to educating and advocating about the risks of using benzos. The girl who uploads the videos is herself a benzo survivor and she’s done a great job talking about the risks. Ironically, she’s also taken fluoroquinolones, so she’s been hit pretty hard in her life. There’s GABA supplements that can be bought from health food stores but I really don’t know much about them or how effective, if at all, they are at repairing damaged receptors. Perhaps L can weigh in and let us know if she’s tried this supplement in the past.

        That’s great that you’re swimming 3 km a day. This can only help you. Unfortunately, I’m not a swimmer but I did start walking for extended periods of late and have been taking in the green colours of spring to “feed” my brain and neurotransmitters. So far, so good.

  20. Lukasz June 7, 2019 at 3:08 pm Reply

    Azz, I want to apologize for saying it was mine and your destiny to go through this ordeal. I feel bad for saying this. Like you said in a previous post, if you hadn’t been prescribed this poison of a drug, you would have been an entirely healthy and happy person. This is very true. I’m sure the same would apply to me and just about everyone else on this site. I think the better terms to use are medical negligence and medical malpractice rather than destiny. This is the work of humans and by me saying it’s destiny, it takes away their responsibility. I would even go as far as to say it’s criminal responsibility that warrants prosecution and jail time, but clearly, these people are above the law.

    Anyway, please accept my apology for using the wrong term. Hope today is a good one for you.

    • Azz June 7, 2019 at 6:47 pm Reply

      No need to apologise in a way it’s a better strategy to reason it I think, otherwise I’m cursing about the injustice of it everyday while the so called medial professional that gave me this poison lives on happily.

      • Lukasz June 10, 2019 at 8:43 am Reply

        I wonder how many of these medical professionals have blood on their hands? i.e. people dying from side effects and antibiotic-induced suicide. You can’t live a happy life when you have blood on your hands.

    • natdavauer June 7, 2019 at 8:39 pm Reply

      Hang in there Lukasz. It’s both tragic and comforting to follow along on this thread. I share so much in common with you all it’s like reading my own replies. So many of the exact same things are happening to us on the same timeframe. It’s tragic because the thought of anyone feeling like me is horrifying, but it’s comforting because the thought of anyone else feeling like me means I’m not alone in this. It’s easy to think I must be the only person on Earth who could be experiencing this. It’s so awful, how could every person in my life and every dr I’ve ever met not be exasperated just trying to wrap their head around how sick I feel 24/7? But alas, it’s just the opposite. Few care and most don’t believe. My wife thought I was making it up for years and now thinks I’m probably not, but there’s certainly no support there. Most Dr’s just wish I’d take some psych pills and leave but a few do belive but just don’t know what to do. In fairness when there’s really no way to know what’s wrong, how do you help someone? I found Dr. Tim Hain (prominent neuro) in Chicago to really believe it’s a thing. He just had no idea what to do about it.

      It’s truly a mystery even though so many things are clearly consistent. Like a venn diagram, there are so many consistencies I see in this and most other chronic illnesses overlapping to create a condition that is completely debilitating but invisible in almost every way. Another constant seems to be change though. My worst symptoms have changed a lot over time. At first they’d rapidly change with crazy new things coming a few weeks or months apart. Now it’s many months but things still slowly morph from one problem to another.

      I still highly recommend FMT for anyone in the position. I do think I turned a corner when I first did it a year ago. I’ve done about 30 in that time. Benefits don’t always seem to last though and honestly, I’m wanting to do more. As mentioned, I do think serotonin plays a big role in this and without the right mix in the biome, you can’t make it well. You also can’t process all sorts of nutrients. So even if you’re supplementing, w/o the right biome, you can’t absorb enough of it.

      I often think of the recovery curve in “The Flox Report.” Of all the things I’ve seen, it seems more and more accurate as time goes on. A spike of extreme illness at the start, a peak of illness in the following couple years, up and downs, a very gradual curve that leads back to recovery that takes 4-6 years. That’s almost exactly how it’s been for me at 3 years in. I’m over the worst of it (hope to God) but feel a long way from normal. Getting better in small ways maybe, but so small they’re hard to see unless looking back over a year.

      I hope you’re all seeing some gradual recovery even if it’s barely perceptible. Again, it helps a lot to see there are other people who understand what it’s like. Even if it’s just a few, it’s huge to know that. That you could explain of the the horrible, insane things that have happened any you would all nod knowingly. Hang in there.

      • L June 7, 2019 at 9:00 pm Reply

        ah, another voice from the past. I am not sure I can ever get past the ignorance and apathy of most of the allopaths. And even though I seek out integratives or NDs whenever possible sometimes I HAVE to see a “regular doc.” I always go prepared with my filled 8 1/2 x 11 page of side effects, and try to explain the most grotesque things I went through, partly to educate and partly to let them know that I am not looking for another “pill” to fix me. And I cry. Every time. The PTSD is strong. I had to see ENT number FOUR yesterday, and kept wondering why the address seemed familiar. As soon as I pulled in the lot I realized that the neurologist, who was the WORST of the dozen that threw me under the bus, post floxing, was in the same building. I almost turned and walked back out again. (The neurologist I saw when I was really at the peak of the nightmarishness, gasping for breath, barely able to walk without help, sight devastated, spasming fingers, numb toes, mentally all over the place, in excruciating pain, and feeling sicker than when I had double pneumonia….and he put in my note I was delusional. A neurologist who had NO IDEA there was a warning about permanent nerve damage.) I did stay though and found out the ENT has had shoulder issues since taking Levaquin several years ago. Not sure he still “got” how body wide the damage can be, but at least I didn’t feel like he was dismissive.

        You mention the importance of the gut microbiome, and truly it has been connected to virtually every disease you can think of…cancer, Alzheimer’s, Parkinsons, etc. So it surely makes sense that it could effect this damage. I mentioned it was suggested to me to do a supervised water only fast, which does some of the same things, like improve gut microbiome. I really think that could be a key to many of the issues that are not directly related to say tendon damage or that sort of thing.

        Good to hear from voices from the past…..

        • Lukasz June 10, 2019 at 5:50 pm

          Have you noticed how every doctor PRETENDS to give a s**t? That’s one of the first things I’ve noticed from my visits. That and how every one of them just types s**t into their little computer so that it looks like they give a s**t, when they actually don’t. I can only imagine the bulls**t they’ve typed onto my file. Not that I care, whatsoever, I just find it funny that all they’re good at is typing some gibberish into a database. I’m also curious, who, if anybody actually looks at these records.

          Maybe the Ontario College of Physicians likes to gather all its’ puppets (doctors and specialists) every now and then and have a good laugh at our expense. Otherwise, I suspect these puppets are typing away for nothing.

          I’m sorry to hear about your PTSD, L. I too have PTSD from these drugs and it’s very difficult to cope with it, as you know all too well. I haven’t felt any joy in years. If you don’t mind me asking, did you get OCD as well?

        • L June 10, 2019 at 7:12 pm

          No, I didn’t. But the ptsd I think will be with me a long time. I cannot go to a new doctor, without crying the moment I start to relate the cipro history. Or talk to anyone about it for that matter.

        • L June 10, 2019 at 7:15 pm

          I don’t have OCD, but still ptsd

        • Azz June 11, 2019 at 7:23 pm

          I’ve found every Dr to not give a s*** and not even pretend to try. I spent a fortune seeing a neurologist who just said it was anxiety and got quite angry when I disagreed, she then referred me to a psychologist who on I suspect the neurologists instructions said the same thing. It’s insane what we’ve had to go through I wouldn’t wish it on my worst enemy. Someone early on told me to not bother seeing Drs they protect there own.

        • Lukasz June 11, 2019 at 3:29 pm

          PTSD is just another beast that needs to be slayed. We WILL defeat it.

        • L June 11, 2019 at 3:53 pm

          Well it’s lessening as time goes on. When I think about what I went through the first year, I can’t really believe I made it through. Some of it was so horrifying, it would make the scariest movie pale in comparison. When suddenly your breathing, your vision, your hearing, your thoughts, your body…are all out of your control, it is terrifying.

        • Lukasz June 12, 2019 at 9:08 am

          They say time heals all wounds, let’s hope that’s the case.

        • Azz June 13, 2019 at 12:51 am

          That’s the worst thing about this nightmarish ordeal, not knowing if it will ever end. I used to really beleive it would but after 2 years it’s getting harder. By the way Lukasz could I have your email?

        • Lukasz June 14, 2019 at 2:37 pm

          I’m still holding on to hope that it will, but like you, I’ve lost quite a bit of confidence as time goes on. First I thought it was a matter of weeks, then I thought it was a matter of months and now years are looking more like decades.

          Sure you can. If you don’t mind, please contact Lisa to obtain it as I would prefer not to publish it here in the rare event some quack of a medical professional or employee sends me spam or worse, a virus. Hope you understand.

        • Azz June 15, 2019 at 5:13 am

          That’s understandable perhaps Facebook would be better, my name is Aaron Hoppitt if anyone wants to add me

        • Lukasz June 14, 2019 at 6:06 pm

          Alternatively, if you feel comfortable putting up your e-mail address, feel free and I’ll reply back. Either way works.

      • Lukasz June 10, 2019 at 4:47 pm Reply

        Hey Nat,

        Good to see you on here again. I was about to post a comment a few days ago to see if anyone had seen you around.

        Yes, unfortunately, it’s these tragic circumstances that bind us. It’s what we all have in common. Sometimes I feel like I drew a bad card from the Deck of Life and that this is the result. Other times, I curse God and the devil. I’ve said some nasty things to them. I also curse the pharma and medical scum who put these vile drugs into the world. In the end though, it doesn’t change my or anyone else’s view of me. I’m still a mentally and physically sick soul.

        I’m sorry to hear about the lack of support. As you’ve read, I’m sure, others, as well as myself, have experienced this first-hand. It’s really unfortunate that this is happening as we are in an extremely vulnerable situation. I’m not saying this to draw pity from anyone who’s healthy, I’m saying this because I feel there is a stigma attached to our illness and it needs to be addressed. Iatrogenic illnesses are real, are an epidemic and they are wrecking havoc on human lives. Most people wouldn’t turn their back on a cancer or ALS patient, so why turn your back on a person who’s illness is caused by pharmaceuticals? I hope the outlook changes but like you said, people are too busy with their own life to worry about us. That’s generally how it’s always been and how it’s likely to be. I’ve come to realize that I just have to accept things as they are and live my life to the best of my ability. There’s no magic pill or cure coming so all we can do at this point in time is just make the best of our remaining time. Though it must be said that, this is easier said than done when you feel ill 24/7.

        As for the process itself, only the makers of these drugs know the details of how they work. I also believe, 100%, that they knew exactly what they were doing when they made them toxic to the human body. There is no way you release something in 1985, hear from people complaining about this side effect and that side effect, and not realize that you f**ked up and accidently poisoned someone. No, these are deliberate acts meant to disable society. There are many benefits to having a disabled society, I won’t get into the specifics here, but I’ll die with the conviction that this is all deliberate.

        Absolutely. Malabsorption seems to be at the centre of it all. No absorption, no health. We’re missing the key ingredients for health and that includes vital vitamins, minerals, nutrients, amino acids and so on. Add in damaged or deceased cells and you have a recipe for chronic illness. Let’s not forget about the toxins (free radicals) that are still very much deposited in our body’s tissue, various organs and bloodstream. They move around freely hence their name, “free radicals”. Oxidative stress, psychological and physiological stress round out the toxic soup. So you’re right Nat, a healthy biome is everything.

        Thanks for sharing some details from the The Flox Report. I’ve never heard of it but it’s reassuring to hear that there is light at the end of the tunnel. As for how long it takes to see this progress come through, I think it all depends on what the floxed person has been doing to get better. For example, I’ve barely touched magnesium in the past 4.5 years. It’s no wonder that my body isn’t recovering as well as I would have hoped. This is my obviously my fault and I need to start supplementing with it asap. For those who have been supplementing with the right supplements from the start, I believe those people are well on their way to recovery. Mind you, it all depends how badly floxed we all were. Some were minorly harmed, while others were so harmed, they were within inches of their life. Nevertheless, I do believe that some kind of recovery is possible for most people.

        Glad you’re doing somewhat better. I know you have a long way to go but keep that fighting spirit going. I’m going to try to do the same.

    • Azz June 9, 2019 at 3:42 am Reply

      Hi Lukasz I hope things have improved for you as late, I just want to ask you about a distressing symptom I’ve had lately and like everything else seems to be tied to that poison. After every meal I get pain in my intestines, does this sound familiar?

      • Lukasz June 10, 2019 at 5:10 pm Reply

        Yes sir. I too have pain in my intestines after eating. It’s especially prevalent down the left side of my abdomen. I had paramedics at my house exactly a week ago because I was on the bathroom floor crying and yelling in pain from abdo pain. I was transported to hospital but have recovered since. I still get this pain after I eat but I try not to think about it.

        • Lukasz June 10, 2019 at 5:15 pm

          It could be the small or large intestine that is causing the pain. i.e. Inflammation

        • Azz June 11, 2019 at 7:17 pm

          thanks, by now every freaky symptom I get can be put down to that poison it feels like someone has punched me in the stomach and it just came out of nowhere. You mentioned that you had a bad reaction to IVs? How long ago did you have it and what was the reaction exactly? I know L had success with it but I’ve been hesitant to take the plunge. Though like you mentioned living like this makes you desperate for a cure.

        • Lukasz June 12, 2019 at 9:05 am

          I had multiple IVs late last year from the beginning of October to the end of December. They were making my overall state worse. My symptoms were getting progressively worse with each IV session and I felt like my body was rejecting them. That’s about the best way I can sum it up.

        • Azz June 12, 2019 at 6:26 pm

          That’s a pitty when the hope is so dearly to find a cure, as you know I had a major setback a year ago as well and then again when I attempted to return to work, the smell of the paint killed me but stupidly I stuck it out for around 2 weeks to give my employer enough notice.

        • L June 12, 2019 at 6:30 pm

          Isn’t it just aggravating how sensitive we are now? I can’t go into certain stores that sell things like candles or other scented products. I have had to get up and move away from someone wearing cologne or perfume. I have gone into restaurants, where I felt ill from all the different odors. It’s hard doing things I used to do for so many reasons, not the least of which is this.

        • Azz June 12, 2019 at 8:17 pm

          I know it’s ridiculously hard to avoid in the modern world I often have to hold my breath and run past whatever I thinks causing the discomfort and it often ruins a planned event, honestly I don’t know what to do for a living now even if I do get better since I’m a welder by trade.

        • L June 12, 2019 at 9:04 pm

          Oh, damn. Yeah I am a paralegal and an actor. I have a real problem with fluorescent lighting now, so most offices are out for me. And I was afraid of not being able to handle stage lights. I can, but I have had breathing issues the ones time I have done a show in the past 4 years….so much going on with sets, makeup, hair products etc. It really sucks.

        • Lukasz June 14, 2019 at 2:26 pm

          I can relate to you both. I tried to carry on working for as long as humanly possible until it became unbearable. I had no choice but to leave work behind as my surroundings were making me too ill. Now I’m one of those people I NEVER thought I would become and it’s demoralizing beyond words. I now understand why so many Canadians have ended up on social welfare assistance. Before it was just a mystery to me.

  21. Lukasz June 10, 2019 at 5:21 pm Reply

    Try drinking caffeine-free peppermint tea that’s been steeped for a good amount of time and see if this helps.

    • Lukasz June 10, 2019 at 5:22 pm Reply

      Sorry, I meant post-meal.

      • Azz June 12, 2019 at 8:18 pm Reply

        Thanks for the advice I’ll give it a go

        • Lukasz June 14, 2019 at 2:40 pm

          No worries mate. Let me know if this helps you. It’s helped me in the past.

  22. Lukasz June 11, 2019 at 3:45 pm Reply

    Another informative video similar to the one I posted above. The message is almost identical. We are learning, we are evolving and we are on the path to enlightenment.

    The Hero of the Dream – Teachings from A Course in Miracles

    Hope this helps any of you who are dealing with mental illness.

    • Alex June 17, 2019 at 2:49 pm Reply

      Hi Lukasz
      What kind of urinary tract issues did you suffer? When did they come on and how long did they last?

      • Lukasz June 17, 2019 at 9:07 pm Reply

        Hey Alex. I had frequent urination and my bladder always seemed to become full after drinking small amount of water or other liquids leading to frequent visits to the bathroom. It would occur on a daily basis. At some point in time, this issue seemed to resolve.

        • Jason June 21, 2019 at 2:42 pm

          A new one for me is reality shifting
          Things warping in my vision walls doors ect.

          Even my perception of feels like things are further away than they actually are or moving even tho they ain’t
          Did you guys experience this ?

        • Azz June 21, 2019 at 9:09 pm

          Yes I’ve had and still have exactly that, it came on relatively later then everything else at 1.5 years in.

        • Lukasz June 21, 2019 at 4:03 pm

          Jason,

          Sorry to hear this.

          I experience something similar to what you’re describing but it’s more of a disconnect between myself and the environment around me. I have trouble connecting fully with whatever I look at, be it nature, objects, etc. I experienced extreme depersonalization and derealization at the beginning of my ordeal and I don’t think these have resolved, at least not yet. Everything is sort of disjointed and it feels like it gets worse after I eat.

          The floaters also annoy me a lot.

          How long have you been floxed?

        • Lukasz June 22, 2019 at 6:09 pm

          On second thought, I don’t think things are as I described above. It was that way for a long time, but I’m quite improved from the days of full-blown disconnect. I’d say this month is the first whereby I feel more connected to my surroundings. Prior to this month though, I still had a deep disconnect with everything around me and it made me incredibly depressed.

          I still feel disoriented and dizzy from time to time, but it’s nothing what I experienced before.

        • Jason June 23, 2019 at 10:31 am

          Over 7 months now and floaters are an issue for me also plus blue light phenomenon.
          I do have a detached feeling from my breathing and things I do al the surroundings around me it comes and goes duing the day.

          The tinnitus seems to go in and out sometimes I dont hear it.

          I have somehow put on alot of weight.and have regular panic attacks
          Still wake up jumpy and really scared.
          I havnt tried magnesium as of yet but have tried b12 supplements and multi vits

          Extremely breathless but have been going to the gym over the last couple of weeks and feel somewhat a little better when I’m there.

          I feel as if I’m in a trance or tripping alot of the time with things moving ect.

          I’ve stopped driving now and hope it passes
          The dizziness hasn’t subsided yet.

        • L June 23, 2019 at 10:45 am

          Jason, my floaters were horrible. For the first year it was like looking through gauze. Entire floors and walls would be literally covered with black spots and those wispy ones. I am over 4 years out and still have a few, but vastly improved from where I was. One thing that I think helped was NAC eye drops. They are mainly used for cataracts, but did seem to improve the floaters. You need to keep your eye shut for a minute after using them and use them every day. (I did twice a day.)

        • natdavauer June 23, 2019 at 5:51 pm

          L, so what was the timeframe on your floaters? I had no eye problems for the first 2 years. Extreme ear issues, but they got significantly better 2 years out. But then the eye issues started. Like you said, like looking through gauze. Eye pressure, pain, a pulling at the back. Worst is there inability to focus. And I don’t mean see sharply, I mean my eyes jump around constantly. I can’t look at one thing. It’s like CNS issues but totally in the eyes. Makes me feel nervous, disoriented, confused. Overall the pressure in my head and what feels like a CSF issue had caused all kids of problems down the line. But I thought I made it without eye issues and now they’re just terrible and getting worse. What’s weird isthat it’s a similar type of problem just applied to eyes instead of ears. Not only is the organ itself dysfunctional but the sense is injured or inflamed or something. With my ears any sound was pain. It wasn’t even the volume it was just the act of firing the audio nerve resulted in pain, confusion, everything. Now it seems to be that way with my eyes. they have all the physical problems but the worst is that looking and seeing actually causes mental issues I think as signals travel down the optic nerve. It sounds like you had this with smell. Cross my fingers I have a lot of nose issues with numbness and pressure but it hasn’t affected the sense I’m smell yet.

        • L June 23, 2019 at 6:27 pm

          well the floaters were better, but still bad at the year mark, then even better at the two year mark, and around 2 1/2=3 years out significantly better. But mine started immediately…literally the morning after the first pill. I was so scared I raced to the dr, thinking I had a detached retina. Then they got progressively worse until, again, it was like trying to look through a scarf. (or as someone else so pointedly put it, like looking through egg drop soup. I also had diminished vision and was diagnosed a few months after with macular degeneration.

          Again I think the carnosine eye drops did help and I used them religously twice a day, for over a year. MY vision had gone from 20/20 and 20/30 to 20/40 and 20/60. But it seems to have moved back to somewhere in between. I did not have the pulling feeling you describe, but I have read of others describe that same thing.

          As for my ears…I know what you mean. A baby crying in a store is PAINFUL for me to hear. And I was in the ER once (never again) and they have these big metal doors that slam shut and I thought I would jump out of my skin. I am still sensitive to loud noises, although not as much…and it really screwed up my hearing. Much diminished and tinnitus which I never had before. A constant whirring, hissing, buzzing sound that makes me crazy. Sometimes it is VERY very loud. NO luck with getting rid of that. (I also at one point had just horrific olfactory nerve damage where everything in the world asphyxiated me. Even things you would think have no scent. IT was awful. I would have had to “check out” had it continued. It was like contantly bein surrounded by open vats of bleach. Thankfully that mostly went away but I do have phantom scents that return (always disgusting) and I am very sensitive now to all scents. There are some stores I can no longer go into. I suspect it is all a lot of nerve damage since I had other nerve damage as well.

        • Lukasz June 23, 2019 at 5:50 pm

          Sorry to hear this Jason. I had similar occurrences to what you’re describing but luckily, they’ve now passed. Hopefully, this state you find yourself in right now will pass. It may take some time though so you may have to ride this out for a little longer.

          At present time, I’m taking probiotics and coq10. These two have stabilized me quite a bit. If you haven’t already, I’d recommend getting on them. So much of our health issue is related to our gut and mitochondria. These areas should be addressed.

          Sending good vibes your way.

  23. Lukasz June 20, 2019 at 7:48 pm Reply

    Clarithromycin and/or Ciprofloxacin cause skin rashes and capillary vessels to burst:

  24. Lukasz June 20, 2019 at 7:55 pm Reply

    More ramblings from my pharmaceutically-damaged brain. One day, I will be normal:

    • Azz June 20, 2019 at 11:16 pm Reply

      You replicated my thoughts exactly and it’s great to see your feeling a bit better! That means your healing so you can take that as massive encouragement. I recently had a good (bearable) day last Saturday and it was very much needed I was truly reaching the end of my rope after a horrible week, and today was going well until I walked past something that smelled like gas now I’m so dizzy it’s hard to stand. This whole experience has made me very apprehensive about the whole medical establishment and there drug peddlers. Keep up the good fight it looks like we’re winning.

      • Lukasz June 21, 2019 at 11:19 am Reply

        Thanks, Aaron. Like you, I have my good (bearable) days and this happened to be one of them. Most days are not like this and things change from moment to moment as you know all too well. Still, it’s nice when these sorts of days and moments come around. It makes you feel human again for a bit.

        Sorry to hear about the chemical reaction. I hope our bodies will be able to improve on the immune system side of things so that we can better tolerate chemicals and other environmental hazards in the future. Hopefully with time, this will get sorted out as well.

        Are you still swimming?

        • Azz June 21, 2019 at 9:13 pm

          Yes I’m still swimming 5 days a week although it cripples me by Friday I do begin to feel physically somewhat better by Monday again. I’m convinced this helps my neurological symptoms if anything by increasing blood and oxygen in the brain. How about your walking?

        • Lukasz June 22, 2019 at 6:00 pm

          For sure, and I’m certain the endorphins in your brain receive a boost as well. Good on you to keep up with it.

          Unfortunately, I’ve sort of neglected my extended walks the past week. I’ll need to resume at some point. Been busy researching different supplements. So much personal research is required to try to get a handle on all this. I feel like a student again.

        • Azz June 22, 2019 at 8:45 pm

          For the past few months I’ve put more faith in exercise then supplements as I didn’t find they helped much (apart from the ALA) and together they cost an absolute fortune. Though I probably didn’t take the ones I most needed like iron, I hope eventually my deficiencies will sort themselves out. I also find exercise gets my mind of the depression and that in itself is valuable. Let me know if you find any supplements help you though as I might not have tried them yet, have you done a test for iron and b12?

        • Lukasz June 23, 2019 at 5:30 pm

          I don’t blame you. The whole supplement game gets very tiring after a while. On the other hand, it can be a necessity for some. I still FULLY believe that there are some supplements out there that can help us tremendously. The trick is to locate them.

          I did have my B12 and iron levels checked. B12 was low a long time ago but the iron was fine. Have you checked them?

        • Azz June 26, 2019 at 12:14 am

          Yes both were low in my case, I guess it’s good news your iron was fine since some absorption is getting through. It was a long time ago but I guess if my symptoms are improving that would be too. I’m having a SHOCKING week at the moment though, looking forward to the next bearable day

        • Azz June 26, 2019 at 3:56 am

          I’m now freaking out about all the vaccines they will give to my newborn, I simply now no longer trust their competence.

        • L June 26, 2019 at 9:10 am

          I don’t blame you, although it might not be as bad as in the US. “In 1983, the US. government recommended 23 doses of seven vaccines, between 2 months and 6 years old. Today, the child vaccination schedule is 69 doses of 16 vaccines, between birth and age 18, with 50 doses administered before age 6” (mercola) I would just try to find the most integrative pediatrician you can.

        • Jason June 24, 2019 at 3:56 pm

          Sorry I cant reply on previous so replying hear thanks L and lucasz
          I am struggling with the random attacks of panic with crazy anxiety 1 min feel somewhat ok but then in dying fear.
          The ear problems are causing an issue for me with stiff neck inflammation and dizziness.

          Did the anxiety ease or does that still come in randomly and really intense ?

          I just dont feel like my thoughts are mine no more with this false reality.

          Patterns seem to move is that my floaters in the way or just tripping?

          I’m not sure if I have any food intolerances as of yet I am writing in a diary to see what sets my symptoms off.
          Blessings to you all
          J

        • L June 24, 2019 at 4:20 pm

          Jason, my anxiety was through the roof. Really terrifying. A constant state of fight or flight. I felt like I had a gun to my head 24/7. I also had paranoia, suicidal ideation too. It DOES go away. You just have to ride it out. Keep telling yourself it is temporary.

          As for vision, I had a number of issues. I had so many floaters that it was kind of like seeing patterns. But I also had (and still have to a lesser degree) major issues with fluorescent lighting. Everything kind of blurs. I also had/have extreme sun sensivity. With one eye, if I look to the side in the sun, it is like someone pulled a shade down. I am not seeing normally/clearly. My vision issues are far better than they were, but continue somewhat.

        • natdavauer June 25, 2019 at 6:15 am

          Jason, that’s all very similar to my experience. Constant dizziness, neck problems, ear problems, derealization and panic attacks. Not sure how far in you are, but the psych stuff does improve. When the anxiety and derealization go away, it’s easier to live. The other CNS stuff and physical stuff is horrible to live with, but at least it’s like living as a disabled person. But a person at least. The psych stuff is like living as an insane alien. Totally inhuman. I think it comes from missing seratonin and damaged gaba receptors. Gut health and time I think work to heal that. My ears aren’t all better but have seen significant improvement. Hang in there and just take it one day at a time. Forget about where you think you should be compared to anyone else. Be glad you’re alive each morning and you won the struggle for that day. Then take on the next day. Things do seem to shift over time so at the very least, just wait until your worst problem gets better and you have a new problem to focus on.

        • Jason June 25, 2019 at 1:59 pm

          It’s the phychosis stuff I’m worried about
          I feel like I’m tripping all the time things move in my vision and I feel like another person with a few moments of clarity.
          I end up crying out of the blue and get real whacky and shakey. Depression and awful anxiety

          What phychosis remains after such a long period of time ? Will I be tripping forever

          I do have a few physical issues like

          Fatigue which is improving
          Tinnitus
          Esr pain
          Dizzyness
          Neck pain
          Eye pain
          Heart pain
          Brain fog
          Breathless
          Back pain
          Leg pain

        • L June 25, 2019 at 2:29 pm

          I cried —no exaggeration—EVERY day for the first year, sometimes several times a day. I cried less the second year, but probably a couple times a week. Please trust that the psychotic stuff will leave. I was terrified mine wouldn’t and I felt so out of control mentally, but it did.

          RE the heart pain…have you had any imaging? Turns out I had pericardial effusion (fluid around the heart)..although it was found accidentally, I did not experience pain from it and was fortunate enough to find an integrative cardiologist who took a “wait and see approach” rather than trying to stuff NSAIDS (the standard recommendation) down my throat, or getting out through a tube. You can get an echocardiogram which does not have any radiation.

          The breathlessness may well be from mitochondrial damage since everything has to work harder. I had “beyond breathlessness” where my breathing would literally cut off as soon as I started to take a breath. It was terrifying. Like being suffocated 24/7. I suspected nerve damage to the central nervous system, but a researcher suggested mitochondrial damage to the heart muscle. Taurate is good for the heart (perhaps take that form of magnesium), coq10 or ubiquinol if you are over 40. A good omega 3 fish oil supplement. There a some other supplements that are good for the mito: R alpha lipoic acid, L carnitine, PQQ, NAC (which is the precursor to glutathione.)

          I had really excruciating midback pain—and I don’t think it’s a coincidence it was near the area where I had had a fractured scapula a few years back. This poison seems to find your weak spots. It was unrelenting, deep in the bone, 15 on a scale of 1-10. Really horribile. After I started nutrient IVs it was one of the first things to go and has never returned

        • Azz June 25, 2019 at 6:26 pm

          I also see patterns moving, at first I thought it was the wind flowing through my window blinds but soon realised there was no wind and my wood ceiling was moving as well. My eyesight was destroyed from day one but one terrible thing definatley improved and that was severe paranoia and hallucinations, like Nat said it was the feeling like I was insane. 2 years out my most painful symptoms are depression which seems to get worse and better but still far from my original happy self, photosensitivity which requires me to wear glasses at all times, nightmares and intermittent dizziness. I’ve always felt like the depression was the most destructive and has destroyed my life the most, in the early days I often thought about eating a bullet but I couldn’t do that to my wife and give the drug company which destroyed our lives the satisfaction.

        • natdavauer June 26, 2019 at 5:49 am

          I’m convinced the psych stuff is from neurotransmitter dysfunction. Specifically seratonin and gaba. As an experiment, I took Valium for a week. 1.5 years ago. I was surprised that it really, really helped with a lot of the dizziness, tinnitus and other head issues. I know it will inevitably put you in a worse position so I stopped and then all the problems came back. But I think since benzos enhance gaba receptors and that’s it, gaba receptor damage is a big part of this. I can identify with almost every single thing people in benzo withdrawal have yet I’m not in benzo withdrawal. I think Cipro puts you in the same condition as someone in benzo withdrawal instantly. Nice thing is that those people all get better. So maybe gaba receptors can heal over time.

          I’m also convinced since seratonin is made by a process of the gut microbiome, once it gets damaged and shifts, it’s not made in the same amount the body is used to. That’s how we end up with lasting depression and general apathy. After a few FMTs I felt it turn back on. Felt happier, could laugh, could make a joke, could watch emotional things and enjoy them. Had some hope about life in general. All of these totally impossible before. This isn’t that uncommon in FMT either. Many do it specifically to cure depression and many feel an emotional boost right after. The reason I think is that you import enough functioning microbes and you feel the seretonin that’s been so lacking. It’s like your body gets a shot of positive feeling. I know it’s far out sounding but it really is the thing that brought me most back to feeling like me again. Still a long way to go but..

        • L June 26, 2019 at 9:21 am

          Not far out sounding at all! They have linked damaged gut microbiome to nearly every disease you can think of…cancer, Alzheimer’s, parkinsons, MS, even fibromyalgia (just read that last week) since it can effect both immunity and inflammation. And since the vagus nerve travels all the way from the gut to the brain, those little buggers can just ride the escalator up. “The gut microbiome plays such a powerful role in mental health, it’s often called the ‘second brain.’ The gut and brain communicate with one another in a bidirectional manner. This may come as a surprise to you, but your brain isn’t doing all the talking. Your gut has just as much to say. This means your gut microbiome health is important to your mental health. ” https://www.jillcarnahan.com/2019/01/07/the-gut-brain-axis-provides-more-clues-in-the-alzheimers-mystery/

        • natdavauer June 26, 2019 at 5:56 am

          Jason,
          I second that the psychosis will go away. Can’t describe how bad it is and no one else ever believe or understand except those here I suppose. It will slowly get better though, hang in there. I used a lot of mantras. Just chants etc that I’d repeat to myself for hours. I listened to many audio books and podcasts. Those things helped get me through the year of psychosis.

          I have every single physical symptom you mention. No more back or leg pain though. Shoulders and neck are not good for me.

        • Azz June 27, 2019 at 7:06 pm

          Thanks for the info, I will certainly try FMT if I get the chance.

        • Nina June 27, 2019 at 7:37 am

          Hi I still have severe brain fog depersonalization and derealization 16 months out. I also have breathing issues and I’m weak and shaky . Can you please help me . When did the depersonalization and the derealization start to leave ? And the fog? I’m 16 months out. And what can I do to help them leave? I see they fully left for most people I don’t know what’s wrong with me or why they’re not leaving I’m scared I’ll be stuck in this other universe forever . I don’t feel real. Everything is weird . Please help me .

        • natdavauer June 27, 2019 at 9:22 pm

          Nina,
          I had all of those things. Terribly and felt exactly like you do. I thought the tremors would never end. Even vibration at night. But they did. Maybe around 2 years. Still have some shakes esp with even a little caffeine. But am not as weak and can be more steady.

          Depersonalization maybe got better around 2 years too. Same problem in the mirror. I was just a thing, not real and my thoughts existed somewhere but not in the me I knew. Still not myself but glad to say that extreme disconnect got better.

          I’ve been dizzy every waking second since the beginning. I dream of not being dizzy. But.. it has improved. At first it was just horrific. I’d be saying out loud constantly.. “I’m so dizzy.” Over and over, everyday, all day. Now it’s just a general feeling of dizziness but I can go about my day mostly.

          Some of us are severe cases and we’re looking at long recovery timelines. Years maybe. You may be in the severe camp, but don’t loose hope. That doesn’t mean you’re dooomed, just that you can recover but it will take longer. Or maybe you can get better quick one day. Don’t forget that is a possibility. Some people just got a recovery curve one day and get better fast. I still hope for it because why not? Hang in there.

  25. Nina June 27, 2019 at 7:27 am Reply

    Hi luckaz did the depersonalization and derealization fully leave ? When did they start to leave? I’m 16 months out and I still have them both with the brain fog pretty severe . Please help . What or I should say how are you feeling these days ? And what symptoms are left?

    • Lukasz June 27, 2019 at 11:44 am Reply

      Nina, I can’t recall when the depersonalization and derealization subsided. It’s been a while though. Perhaps after a couple of years or so? Unfortunately, everything is a blur in my life and I have trouble remembering the past thanks to this poison. This makes it difficult to give you an exact timeframe. Ironically, I used to have the best memory of anyone I knew. Now, it’s worse than everyone I know!

      I was feeling decent not long ago but recently, I’ve been on the decline again. It may be due to me eating diary (cheese) and wheat (bread) or possibly one of the new supplements I’m taking. I’m currently taking probiotics, coq10 and ashwagandha. Lot of confusion, dizziness, headaches and things of that sort. Perhaps my body is detoxing or it’s a sign of something not agreeing with me. I can’t tell.

      All I can tell you is that I’m still very much unstable, both physically and mentally, and on the lookout for supplements that can take me to the next level. It’s a grind.

      • Nina June 27, 2019 at 1:38 pm Reply

        That’s confusing I thought the depersonalization and the derealization is what is causing my foggy memory etc ? Blur? Ok but the days are not blurring for you anymore clearly right ? You can look in the mirror and recognize yourself?

        • Lukasz June 27, 2019 at 8:52 pm

          Yes, I can recognize myself in the mirror but as someone who has neurogenerative disease, I can tell you that all I see is a shell of the man I once was. I look thin, frail and sick. Benign fasciculation syndrome (BFS) will do that to you.

          When I made reference to my life being a blur, I meant that my brain is disorganized. I’ve been dealing with this since the very beginning and I can’t seem to bring it under control. Nothing in my brain feels organized, it’s all just disjointed.

          Fluoroquinolones cause neurotransmitter damage and oxidative stress which is why we have these mental and physical symptoms in the first place. I wish I had answers for you as to how to bring it all under control but I’m still trying to unravel the mystery myself. All I know is that neurotransmitter damage, magnesium and iron deficiencies seem to be at the root of it all.

        • Lukasz June 27, 2019 at 8:55 pm

          *neurodegenerative disease

        • Lukasz June 27, 2019 at 9:18 pm

          I use the label, Benign fasciculation syndrome (BFS), loosely. It’s just another medical community-derived term that overlaps with a countless number of other syndromes and conditions. In the end, most of these syndromes and conditions can be linked to pharmaceuticals.

      • Azz June 27, 2019 at 7:11 pm Reply

        I think wheat and dairy have caused me to decline as well, it’s hard to have such a boring diet but it would seem necessary for us at least.

        • Lukasz June 27, 2019 at 9:05 pm

          I’m going to ditch wheat and dairy from now on. There’s no choice as far as I’m concerned as they cause mucous, inflammation and muscle spasms.

        • Lukasz June 27, 2019 at 9:21 pm

          *excessive mucus production

      • Nina June 27, 2019 at 11:27 pm Reply

        I read if you heal the gut all the brain stuff leaves . Luckaz do you still have brain fog ? The weight loss comes back for everyone it just takes s long time . Hang in there I believe all floxies heal just at different intervals. Well at least the depersonalization and derealization leaves I feel like I’m in the twilight zone. Luckaz I had adhd before being floxed I think that’s what you mean by disorganized brain. Did you try meditating ? That always helped me.

        • Lukasz June 28, 2019 at 8:15 am

          That’s right. The gut-brain connection has been well documented. Without healing the gut, there is 0% chance of regaining mental health. I haven’t fully addressed my gut issues and that’s why I’m still mentally ill. Most people who have addressed this issue, are more or less recovered, at least from the mental health standpoint. The physical symptoms are an entirely different matter.

          Yes, I still have brain fog. Memory loss, confusion, disorientation, lack of mental clarity, inability to focus and difficulty with decision-making is all considered brain fog and I have all of them to my name. As I mentioned earlier, I’ve had these symptoms since the beginning and haven’t been able to rid myself of them likely due to the on-going gut issues. I plan to start addressing this.

          Yes, the depersonalization and derealization will leave you at some point. It was scary as hell when I went through it. I felt like I was living in my own hell and the world I once knew was separate from me. It was as if I was completely detached from it. Thankfully, I now feel somewhat back in the world, though not entirely. I might still be in purgatory or one of the higher levels of hell.

          I’ve tried meditating in the past but couldn’t stick with it. It just wasn’t for me. What works best for me is attending to creativity. Working on projects and things of that sort. Unfortunately, I’ve neglected the arts since all this self-research takes up so much valuable time. I agree though, for those who are able, meditation is a valuable practice.

  26. Nina June 28, 2019 at 2:30 pm Reply

    Luckaz your brain will heal. I read the floxie report the brain stuff heals for everyone but here’s the thing you have to and you must heal the gut. Once you heal the gut the brain heals as well as the body weaknes and the weight loss and food sensitivities. Have you a functional doc near you ? Go to one but don’t tell them your floxed just say you want to heal your gut. Docs looked at me like I was crazy when I said I was floxed and termed me anorexic. I lost 25 pounds . I’m 85 pounds but then again I’m a small female . What body symptoms do you still have? Have you not improved at all since you got floxed ?

    • Lukasz June 28, 2019 at 5:14 pm Reply

      Thanks for the reassurance.

      No functional doc, but I’m looking for one. For some reason, they’re hard to come by. Lots of conventional ones and plenty of naturopathic ones, but the functional/integrative ones seem to be low in numbers.

      Like you, I also lost 25 lbs. I’ve always been of a thinner build, but the collagen loss that was happening before my eyes was something unlike I’ve ever seen. It seemed like every muscle was turning into jello.

      How sad that doctors label people without knowing the real facts behind weight loss. Majority of weight loss cases that occur are directly linked to pharmaceutical use. Yet they never ask about that, do they?

      I’ve improved a great deal in the past 4.5 years, but there’s still some lingering issues. From the physical standpoint, I still have muscle, tendon and joint pain but it has improved since I started taking CoQ10. I still wake up in some pain but it’s not as bad as it was prior to coq10. I also tire more easily after exercising, walking and being out in the sun. My recovery time is much longer than it used to be. I used to get all kinds of strange aches and pains all over my body but they seem to have subsided, thankfully.

      How about yourself? Been improving well?

      • Nina June 29, 2019 at 1:36 am Reply

        Hi Luckaz well good I feel in my heart you will fully heal. Sadly my depersonalization and derealization is not leaving and I’m scared . I’m 16 months out . I still can’t gain weight but what is worse is I have weakness so terrible I have to sit to bathe I can’t syand to shower . I as well have always been small framed I’m just all ribs now. I’m trying to heal my gut. I’d say mu chief complaint is severe body weakness not sure if you had that and if it leaves ? Then I have horrible horrible depersonalization it’s like I live in another world. I’m worried that won’t leave either . Let m write the diet I am doing that is helping things along a bit . Hang in there . We can get there . Did you gain anything back from the weight lost?

        • Jason June 29, 2019 at 2:16 pm

          Somehow I’ve gained weight about 25bs of fat
          Full of anxiety and derealisation. Depersonalization is almost gone
          I can now recognise myself in a mirror but the world seems to scary for my brain to attach itself to it yet.I’m still quite dizzy,full of panic
          The walls and things are still moving like I’m tripping and unsteady in the brain.

          I want to thank you all for giving me hope in this dark time.

          I still suffer from nightmares and confusion. And constant anilising and overthinking but I do see improvement.
          I’m not sure if I so have any food allergies or causing issues how do you know?

          I hope you all are doing better every day

        • L June 29, 2019 at 2:57 pm

          You can tested tested for food allergies at the doctors or you can do a food elimination diet, starting with the “usual suspects” like dairy, corn, peanuts, eggs, soy, shellfish, wheat. Then adding them back in one at a time and see if you react.

          I can’t even describe my anxiety at its worst. Nightmarish comes the closest. Felt like I could jump out of my skin at any given moment. (When I was able to drive again, a year or so on, I would have to pull off the road if someone honked at me, tailgated, etc. IT was just so stressful.) One thing that honestly helped me…well make that two things. You want to get back to the restful state, as opposed to the “fight or flight.” So one thing to help get back into parasympathetic mode is to go for a walk. Especially in nature if that is available to you. The second thing that can make it switch back is breathing. Breathe in (from your stomach) for 4 counts, and the exhale for 7 or 8. I read that it actually tells the vagus nerve to signal your brain to switch out of sympathetic mode. I did this ALL the time. In fact, I got so in the habit of counting that to this day, almost 4 1/2 years later, I sometimes find myself just counting while I walk and I have to tell myself to knock it off!

        • Azz June 29, 2019 at 7:27 pm

          Throw in hallucinations which were truly terrifying and phychotic paranoia and you sound just like I did, the worst of it has passed but everything else still lingers. I now have a profound sensitivity to dairy, I know this by the stomach pain I get soon after eating it as well as having a bright yellow stool colour upon excretion. As for gluten, it’s just a hunch but whenever I eat a lot of it I have pretty severe setbacks.

        • Lukasz June 29, 2019 at 9:19 pm

          Nina,

          I had everything you’re describing here. The psychiatric symptoms do resolve but they tend to take a while. They’re the biggest hurdle to overcome but if you hang in there long enough, there’s a good chance they’ll vanish. If I can leave psychosis behind, so can you, and so can anyone else who is experiencing this state. As for the weakness you mention, I also had that for a LONG, LONG time, and it’s only recently resolved itself. For years, I could barely stand at the sink to brush my teeth or stand in the shower because my legs felt like they were going to give out at any moment. I also ended up losing a job I worked hard for because of my inability to stand or walk for prolonged periods. It was shattering to me because I really wanted to work for this company. Incredibly though, this is now resolved. Same thing with the weight. I was a skeleton for years but as of late, some weight has been coming back on. Not as much as I’d hoped, but it’s improving. So all the things you and others are experiencing, if all goes well, you should be seeing the same results.

          Jason,

          I feel your pain, bro. I was in this same state for a LONG time. Looking back, I cannot believe I survived it. Let’s just say I had to use up every ounce of willpower in me to keep myself alive. Thanks be to God, I’m in a much better place today but I know you and others can overcome this as well. Of this, I have no doubt. You just have to keep going. Keep swimming until you reach the shore. It may take months, it may even take years, but eventually, you’ll feel more like yourself and realize how far you’ve come. I still wake up with some pain, this uneasy feeling, lack of refreshing sleep perhaps, but I still remember the days of no sleep and the days of waking up feeling like somebody boxed the heck out of me throughout the night. I also had unspeakable nightmares. It was unreal. That too has passed. So keep believing brother. Before you know it, you’ll be feeling more like your old self. As for food intolerances and sensitivities, usually if you eat something and start to feel really off, it may mean that you’re reacting to that particular food. Many of us here have this issue.

          Sending prayers and blessings to you both.

    • Azz June 29, 2019 at 2:03 am Reply

      Any ideas on how to heal the gut? Other then FMT I would love to know of other methods if you have any.

      • Lukasz June 30, 2019 at 2:41 pm Reply

        Aaron,

        Not sure if you’re directing this question at me or Nat, but here’s my suggestions for fixing the gut. Keep in mind, I have no experience with the below supplements. I’ve been recommended them by others and am passing on this recommendation to you.

        I do, however, plan to purchase them soon.

        I’m hearing good things about Restore and their mineral supplements. A chiropractor I visited recently recommended it for my problems. It’s also one of the most highly rated supplements on the market for those experiencing leaky gut and/or antibiotic toxicity. I did a lot of research on it and it seems to be the real deal. I’ll be giving it a try after I’m done detoxing with Coseva’s Advanced TRS (Toxin Removal System).

        Restore sells 32oz., 16oz., and 8oz. bottles of the supplement I mentioned and luckily for you, they also ship to Australia. Their sinus spray is also popular and is suppose to further support gut-brain health by clearing toxins in the sinuses. I might add it as well when the time comes to purchase.

        There is also a Chinese herbal tea called Spring Dragon Longevity Tea. It claims to be the “Healthiest Tea On Earth”. It comes from organically grown Gynostemma leaves, as well as 5 other Chinese herbs which are suppose to be health promoting. One of the many claims is that it acts as a digestive aid and improves health on every level. It is suppose to be the ultimate Chinese herbal tea and the ratings are also very high. I have no idea how valid any of their claims are. I’m just passing on another option if the above ones don’t work out for you.

        Hope some of this info helps you out, mate.

        • Lukasz June 30, 2019 at 2:50 pm

          Links to the above-mentioned supplements are found below:

          Coseva Advanced TRS
          https://lymon21.mycoseva.com/

          Restore 4 Life Gut-Brain Health
          https://shop.restore4life.com/

          Spring Dragon Longevity Tea
          https://www.dragonherbs.com/spring-dragon-longevity-tea.html

        • Azz July 13, 2019 at 12:15 am

          Thanks for that, how have you been as late?

        • L June 30, 2019 at 3:46 pm

          Thanks for the reminder re Restore. MY initial ND (my “life saver” as I call him) had me on that too…need to go back one for insurance

        • Lukasz July 23, 2019 at 9:30 am

          Not good. I’m experiencing a lot of nervous system issues. Frequent and uncomfortable muscle spasms, headaches, dizziness, confusion. Lots of fear coming into my life. Feels as though someone is out to kill me. A higher power.

          I’m scared and want to die.

        • L July 23, 2019 at 10:28 am

          OH Lukasz, so sorry to hear this. I know it can get expensive but I wish you could find a good ND or integrative doctor to help you sort through all of this. I couldn’t have gotten to where I am without their help.

          I had heard of this site before, and found this info there on supplements that benefit the nervous system. (if the screen comes up asking to sign up with email address, you can just make one up. I did. https://www.newportnaturalhealth.com/2015/05/9-nervous-system-supplements/

        • Azz July 23, 2019 at 7:19 pm

          Sorry to hear that, unfortunately I’m also in your boat everything has come back if not worse then before with dizziness, confusion, nightmares, depression ect. It’s demoralising. My memory has also gone to shatters. Taking ALA definatley helps but when I stop it all comes back again. Here’s my email if you want to get in touch aaronhoppitt31@gmail.com.

        • Nathaniel Davauer July 24, 2019 at 11:02 am

          Sorry to hear this. I’ve also been feeling worse lately. But here’s something I think everyone should check out. I’ve been following jen Brea (Made the movie Unrest about CFS/ME) because she suffers in many similar ways. Well just recently she posted that after CCI surgery, she’s recovered from CFS. I’m positive my neck and brain stem are involved and have become more so over time because of connective tissue damage. I also had extreme mold exposure and a viral triggered onset (before getting Cipro). So Many things line up and I’m very surprised but not surprised to hear releasing the pressure on her brainstem cleared up a lot of the CNS issues. Check out the recent articles on this page. Also the health update #3 about remission.
          View at Medium.com

          Also, watch Unrest if you have time. It’s a good window of what it’s like to live with a chronic illness and I think a great example of what it’s like to have a supportive partner (her husband Omar).

        • Lukasz July 29, 2019 at 10:01 am

          So the question is, where do the rest of us go from here? What steps do we need to take to recover like Jen?

        • Azz August 13, 2019 at 1:51 am

          I would never risk having any kind of surgery, god only knows what a disasterous setback anesthesia would produce. Im still hoping time will be the cure, though I haven’t improved as much as I’d have hoped it’s still slight and hopefully someday I can be my normal self again. If I ever get out of this I’ve learned a very valuable lesson, to never trust the bastards.

        • Lukasz August 13, 2019 at 6:03 pm

          Aaron, that’s a good point you make. I can see anesthesia causing relapses in those of us who were floxed. Reason is simple: chemicals.

          Jennifer’s story, though, has me in awe. Here is this woman, who’s been suffering from much of the same symptoms that we’re suffering from for 8 straight years. Like us, she is essentially housebound, and on certain days, even bedbound. She has these crashes many of which are attributed to over-exertion, or in many cases, only moderate exertion. The symptoms cycle through her, the same ones coming and going year after year. Test after test, reveals nothing. Blood work normal every time. Sounding familiar yet?

          What amazes me though is that after her surgery for CCI (craniocervical instability), her symptoms are ALL gone. Every last one. That’s a miracle if I ever heard one. While it’d be premature to line-up for the surgery she had, I do think those of us who are experiencing the same symptoms that she experienced should be looking into brain-spine injuries as a possible cause of our suffering. In particular, the brainstem which could affect so many functions and cause so many symptoms to manifest. For those of us who’ve been in MVAs (Motor Vehicle Accidents), it’s even more important to leave no stone unturned. It took 8 years for her to get her life back, how long will it take for us to get ours back?

          While I agree with you about the many risks of surgery and anesthesia itself (I was put under a few years back for an endoscopy/gastroscopy and wouldn’t want to go through that again unless absolutely necessary), it can be the difference between living a good life again and living with this disorder for who knows how many years.

          Time, might in fact, provide the cure, but what if it doesn’t? What if we need to find the source of the illness? It’s then, in my opinion, that we need to dig deeper into what is actually causing all our symptoms. Is it just the antibiotics or is it something more than that?

        • L August 13, 2019 at 6:10 pm

          WE are all so different in our reactions. AS you know I was about as damaged as you can be post cipro. Head to toe damage. Nerve damage; mitochondrial damage,; damage to my eyes, my heart, my gut; peripheral neuropathy; olfactory nerve damage; terrifying mental side effects, and on and on. Over 30 side effects. And yet, since then, I have had dental anesthesia 3 times; anesthesia for a colonoscopy; anesthesia for a sinus procedure. …so at least 5 times I had anesthesia and had zero side effects. So my point is, if someone here is considering some kind of surgery that would help them, I would ask to know the anesthetic…check to make sure it does not contain fluoride, and go for it.

        • Lukasz August 13, 2019 at 7:14 pm

          L, I agree.

          Sometimes the risk outweighs the benefits but at other times, the benefits outweigh the risk. It’s a tough call. If I knew for certain that I had her issues, namely craniocervical instability and tethered cord syndrome, I would opt for the surgeries.

          When I read through your list of head to toe damage, it’s like reading my own list. I suffered the exact same issues as you and around the same time too. It never ceases to amaze me how consistent the damage is between so many of us.

        • L August 13, 2019 at 7:56 pm

          Just curious…it tore the meniscus in both knees and I lost 1/4 of my body weight in 3 weeks. Did you have anything like that? (and I can’t begin to describe the mental stuff…like a Stephen king novel meets the twilight zone)

        • Lukasz August 13, 2019 at 7:19 pm

          Also, thanks for the tip re: checking to see if the anesthetic contains fluoride. That’s a good thing to make a mental note of, but with the memory loss, better to write it down.

          🙂

        • Lukasz August 13, 2019 at 8:47 pm

          I don’t know if there is any damage to the meniscus in my knees but my legs have been ravaged by the drugs. I can tell there’s a lot of internal damage to my joints, muscles and tendons. It’s certainly improved over the years but my lower legs still cause me lots of problems especially if I stand or walk for too long. Also, once in a while I end up with these painful muscle pulls which seem to come out of the blue. One occurred just the other day, as soon as I woke up. It was so painful that I was forced to rest for days. To this day though, the lower part of my legs as well as the feet are most affected. It’s where I experience the most pain and where the drug’s fragments seem to be lodged the most.

          The weight loss was also extensive. I estimate at least 20-25 lbs. within a couple of weeks. Never have been able to regain the lost weight, likely due to collagen loss and on-going malabsorption. Were you able to regain any of the weight you lost or is it still off?

        • L August 13, 2019 at 9:19 pm

          It took me about 1 1/2 years to gain the weight back, but I did. Between the sudden weight loss and collagen damage it really took a toll on my skin. Especially on my legs. I had really great legs before this. Now I hate to wear shorts or a suit. Of course cosmetic issues are the least of the issues, but after religiously working out and taking really good care of my body for years, it just really sucks. I am now back to how I was before the cipro, where it is more of a struggle to keep my weight from going up, but I am just about right where I should be weight wise.

          Sorry to hear you are still having so many issues with your legs. I really think all the IVs I had must have helped considering how far I have come.

        • Lukasz August 14, 2019 at 9:38 am

          Good to hear that you were able to gain the weight back. Sudden and drastic weight loss is a classic sign of a disease-state. When I saw the weight melting off me, I knew I was in trouble. I actually thought I might have cancer since cancer patients drop a lot of weight but then I found this site and the rest, as they say, is history.

          Since you bring up leg appearance, mine have lost so much collagen/muscle, that I now refer to them as “Gazelle Legs”. These antibiotics chewed through the muscle. I never even knew that was possible. Like you said, it’s the least of our problems but confidence does take a bit of a hit when your body changes this much.

        • Lukasz August 14, 2019 at 9:45 am

          Then again, who cares? Our bodies begin to rot from the day we’re born.

  27. Lukasz August 13, 2019 at 6:12 pm Reply

    Here’s Jennifer’s Health Update #3:

    My ME is in remission – May 20, 2019

    View at Medium.com

    The charts at the bottom of the blog indicate that her last 2 surgeries were the jackpot.

    • Azz August 14, 2019 at 4:14 am Reply

      That’s great news, I really suspected using anaesthesia would be a nightmare for us. I’ve actually put off going to the dentist for exactly that reason. I agree with Lucasz though, I would have to be sure thats the problem before taking the risk. Ofcourse Im willing to try basically anything to get out of this 24/7 nightmare.

      • Lukasz August 14, 2019 at 9:52 am Reply

        How are you feeling of late? Any improvement since the last update or the same? Still on the ALA?

        • Jason smith August 14, 2019 at 11:00 am

          Is there a surgery to get rid of the hallucinations?
          I still have a lot of head pressure but the hallucinations and dizziness are driving me nuts as walls breath and things move even tho they dont.
          Which makes my anxiety and derealisation so much worse.
          Did you find anything to get rid of these issues. ?

          Somehow I have lost muscle but put alot.of fat on and even got stretch Mark’s on my legs and stomach.
          I cant even wear normal socks.as they cause my legs to swell.
          Hiw are you feeling these days as of late

        • Azz August 14, 2019 at 6:46 pm

          Only time helped me in that regard, I tried a lot of things all of which came to nothing. It’s gotten worse during the past week but till then it was significantly better then a year ago. Also do you find it hard to focus on things and seems as if your seeing double? This BS doesn’t go in a hurry but I like to think it will eventually, hopefully within the next 2 years. How is your mood? Depression has been strongly tied to my other symptoms in general.

        • natdavauer August 14, 2019 at 7:11 pm

          I Just know there are major issues with my neck, brain stem, back of my head, CSF etc. Positive. How much they are the blame for my current condition is the real mystery. I doubt Jen thought that was the key to so much improvement, but it was. I’ve been telling my neurologist and other drs for years about the sensations in my neck and head. So I know it’s involved, I only wish I knew how much. I’d push for surgery if I felt confidant it would help a lot.

          Like Jen, I think connective tissue is the key. It gets damaged somehow > genetic (EDS, Marfan), pathogen (Lyme, mold etc), or FQT. Once it’s damaged you start to suffer a cascade of things that all stem from that. People in all three of the above groups suffer very, very similar chronic symptoms for years. Collagen fibers seem to be the key. However they’re damaged, they end up causing the same problems. And one of those problems is that they erode the ability for the neck to hold up the dura, CSF, brain etc and then you start to get all these symptoms related to CCI and brain stem compression. usually a few years in because that damage takes time. Of course surgery would see a big benefit because you’re solving that long established issue even if you didn’t solve the cause.

          Maybe it’s the fact that mitochondrial damage has some direct link to collagen synthesis. Maybe it’s that we loose part of our microbiome that is needed to excrete the right chemicals to absorb the nutrients needed to make collagen. Maybe it’s that harbored microbes that were in check are no longer in check because of a weakened immune system (HHV, EBV, Lyme, mold etc). Maybe it’s the fact we’ve lost oxalobactor bacteria and can no longer break down oxalate and it builds up in connective tissue.

          When I approach a dr I don’t even know where to start but I do know the general venn diagram of symptoms that are shared among many of the conditions that are definitly linked somehow. Of course, they only see me as insane so will not even try to look into the answers to these questions. Understandably, it’s such a massive pile of things that are potentially wrong and such an extreme list of suffering, I can see how any Dr would just assume it’s not possible this is all happening to someone. Much easier to just think this guy needs some anxiety medicine.

          I know the microbiome is heavily involved too. I’ve done over 30 FMTs now and I’ve seen a lot of things change. I’ve gained weight, gained muscle, lost weight and am now loosing muscle again. My veins were almost invisible for years and now they’re buldgeing out. In the last few weeks my forearms and just dissapearing. Loosing muscle and just throbbing with pain. I believe the muscle is atrophying or something as my pee is darker and I think it’s a mild version of that muscle wasting thing. Legs similar but not as bad as forearms. How could this be related to microbiome? I don’t know but I do know when I did the first big biome replacement in the UK a year ago my forearms hurt so bad I couldn’t sleep. No idea what the link could but, but there is one. When my stools are more solid and I’m passing gas now and then, I can tell everything is better. It’s like the gut is working properly. I gain weight and feel stronger. I can just tell I’m absorbing nutrition and processing food. But lately, stools have been loose, not normal. Loosing weight and weak.

          Strangely my most visible problems are right in the center of my body. Right above stomach and below chest. It gets very red there. I have little inflamed vessels I can see under the skin when everything flares. It’s very painful along my rib cage and diaphragm. Sometimes it looks like sunburn when there’s a flare. Maybe that MCAS or something. This is the one thing I can show dr.s but of course it’s not my head and I can’t even begin to explain how it’s related to everything else so they just go: “huh.” Drives me crazy too because clearly that’s related but it’s hard to think it’s caused by brain stem compression or CCI. It’s more likely that whatever it is is also the cause of the brain stem stuff. Forearms, ribcage/diaphragm, microbiome and neck/brainstem. All ruined and all ruined by the same core problem but I have NO IDEA where to even start.

          Luckily, my psychological problems are a lot better. I still have terrible cognitive fog that comes and goes and it’s just insane that I just live with that like it’s ok, but my ability to feel like a person is significantly better. I’m not happy obviously but at least I feel human. That’s a big relief.

          Hope you’re all making those tiny steps of progress that keep you motivated. The Jen Brae thing whether I can get surgery or not is a big motivator. She suffered a lot of similar stuff and she did something and is making progress. I just need to know that life isn’t totally over. That there’s at least a chance to return to normal.

        • Lukasz August 16, 2019 at 10:33 am

          Jason,

          There is no surgery to remove hallucinations. Hallucinations are part of a psychiatric condition / illness. Early on in my ordeal, I experienced psychosis, as well as a state of depersonalization-derealization. I felt detached from the world, as well as my own body. It was one of the scariest experiences of my life. The psychosis encouraged me to commit suicide on a daily basis and I would be drawing up plans for my suicide on an almost daily basis. I penned countless suicide notes over the years that followed, that’s how badly I was affected by it. Even though objects weren’t moving around for me, as they are for you, I truly feel that at some point, you will leave these psychiatric symptoms behind. Over the course of time, their intensity will reduce and you’ll begin to feel better. My thoughts and prayers are with you.

        • Azz August 16, 2019 at 6:43 pm

          I also find eating organic seems to help tremendously, I’ve recently had a pretty severe setback and I think it’s because I whent back to eating chips and other non organic fruits and vegetables. Mainly because of financial constrictions. I’ve had all of your symptoms also phychotic paranoia which made me feel like someone was always watching me (scary stuff). This is one thing that did go thank god. How early on are you? I’m afraid for those of us severely affected it takes years to get better but it does happen. I found this immensely discouraging to begin with as so many on this site are completely better within 1-2 years.

        • Lukasz August 16, 2019 at 11:22 am

          Aaron,

          Not sure if you’re asking me or Jason but as far as my health is concerned, I’m still struggling. The detox supplement I’m on seems to be helping with clarity, but I can’t help but think that it’s also generating a Herxheimer reaction. I’m hoping to use this supplement to the end of the month as it wasn’t cheap and I want to obtain the max amount of benefit from it. If the Herx gets to be too much, then I may have to stop it before the end of the month. Hopefully by that time, this detox supplement will have extracted a fair amount of toxins from my body. Overall though, I’m far from where I need to be. Nothing short of feeling like a human being will suffice.

        • Lukasz August 16, 2019 at 1:50 pm

          natdavauer,

          I hear you. I’m long suspected the same. What has your neurologist and doctors said about it when you’ve brought it up? Let me guess, they’re not fully convinced? There is not much of an incentive for them if you get better, but plenty if you don’t. Frequent doctor, specialist and hospital visits, sales of medications aka drugs, supplements, treatments, therapies, and the list goes on. Until we find doctors who have their ethics and morals straight, nothing will change. Jennifer Brea seems to have found the right professionals who helped diagnose her, advise her, and ultimately, helped her regain good health. Problem is, these kinds of people are hard to come by. If found though, it can be a game changer.

          You make some really good points in regards to CCI and brain stem compression. As Jennifer and you also referred to, there seems to be a build-up of fluid (toxins) in the vicinity of the brain stem which adds even more pressure to an already overburdened system. This could be the reason why so many of us have the feeling or sensation of head pressure that seems to come and go. I know I still get it on a daily basis, and I’m sure many others here do as well. Getting this fluid out could be a critical component.

          I agree with everything you’re saying, except, the part about doctors thinking you’re insane. I truly believe MOST doctors are well aware of what antibiotics have done to people but are sworn to secrecy not to talk about it. If they choose to talk, they can get themselves into some serious hot water and will most certainly end their career. The ones I’ve spoken to, seemed to be in the know, but unable to speak about it for obvious reasons. A minority, on the other hand, simply have no knowledge of what’s going on.

          Sorry to hear about the current state of affairs. I’ve also been fluctuating in a similar way. The colour of my urine has also gone dark and I’ve been concerned about it. It certainly doesn’t look healthy. Interesting also that there seems to be a link between the muscle groups and the microbiome.

          Glad you’re doing somewhat better psychologically. I also get the brutal brain fog or whatever it’s called. Makes focusing on anything virtually impossible. Hell, if I’m to be honest, I think I suffered a form of autism from all this. Sometimes, I can’t even read because the concentration issue is so bad.

          I agree with you 100% on Jennifer’s story. It ought to give up some hope considering her symptoms match ours. I have a new, more detailed MRI coming up on Monday. It is suppose to be of the head and spine, and might paint a better picture of the brain stem situation. I’m also doing blood tests to determine the status of my thyroid and it too may help shed some light on all this. I also need to begin tackling the micobiome. Lots of work to be done still but there’s hope.

          All the best to you, Nat. Hope you can get to the root of it all and regain your health.

  28. Lukasz August 14, 2019 at 7:35 pm Reply

    For the past two weeks, I’ve been using Coseva’s Advanced TRS detoxification supplement, and a week ago, I added CoQ10 into the mix. I have seen some very decent improvement from these supplements and thought I’d share some thoughts on them. As mentioned in the video, they’re not a “magic bullet”, but they have given me some hope for the future. As for the other supplement, Restore by Restore4Life, I had a very negative reaction to it and as a result, have sent it in for a refund. I’ll continue with both the Coseva and CoQ10 in the hope that they continue to heal my body and mind.

    Coseva Advanced TRS and Coenzyme Q10 Are Helping

    • L August 14, 2019 at 7:49 pm Reply

      As always, I say this with the caveat that someone, somewhere, could have a negative reaction, but I cant help but think that most floxies would benefit from coq10 (or ubiquinol for those over 40.) You need coq10 for mitochondrial function. I also take pqq. There are other supplements that help as well, but the basic one is coq10. Here is something on using coq10 after issues from statins https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096178/

      • Jason smith August 14, 2019 at 10:59 pm Reply

        My mood fluctuates many times a day
        I get sperts of feeling ok and that I can beat this then a wave of hallucinations or something will take over me and I’m back to square 1
        Anxiety is still a big issue for me with depression
        I started curcumin 95% and has helped with mood but the derealisation keeps me stuck in this anxious state.
        Yes I have double vision.
        Hallucinations or things look weird
        Sparkles or visual snow
        Floaters
        Depth perception issues and dizzyness
        Looks like the world moves all the time
        And goes blurry quite often.
        I havnt tried mag yet was thinking of msm has anyone had luck with that sulphur based chemical.
        It’s meant to help with many issues plus leaky gut.
        Sorry to hear you have been struggling more as of late hope things ease off asap.
        What is coq10 ?

        • L August 15, 2019 at 9:08 am

          Starting at the bottom, coq10 is an enzyme you naturally produce and is necessary for mitochondnrial function. If you are over 40 it is suggested that you take the ubiquinol form because your body has a harder time utilizing the coq10 form. Magesium is the number one supplement we need to take because it is depleted by the flq and it necessary for all body functions. RE floaters, those will lessen with time but one thing that may help are eye drops like CAN-c or other carnosine eye drops. Glad the curcumin is helping. Studies have show it works as well (better?) than Prozac. IT worked for me, after decades on antidepressants.

          I take around 6,000 mg of MSM and have for months as a replacement for asthma meds. Of course you wouldn’t need to take that kind of doses, but I say that just to say that it seems to be a pretty safe supplement. I would just start small and see what happens.

          As for the anxiety, it was crippling for me, but thankfully it finally went away. Some things that can help you get back to the parasympathetic nervous system (rest/digest) from sympathetic (fight/flight) are breathing techniques. One I used a lot was breathing in for say 4 counts, then exhaling for 7 or 8. Also, ironically (since it is the “resting” system you want to get back to) I found that just sitting idly made it worse. go for a walk. (and if you can do it out in nature even better. Do it barefoot on a beach of grassy area. “grounding” has other health benefits too.)

    • Azz August 16, 2019 at 8:01 pm Reply

      You noted a while ago that you had a bad reaction to IV’s, do you believe this caused a setback to your current state? I was doing ok 10 months out but after putting on an antifungal to treat an infection it caused a SEVERE setback I’m yet to recover from.

      • Jason smith August 17, 2019 at 1:39 pm Reply

        Thanks for the support guys I dn where I would be it without your support.

        Trying magnesium tomorrow getting l threonate
        I think that’s the best from what I have researched but obviously it only works for some so I have my fingers crossed and keeping calm trying to not think about the walls breathing.

        Any food seems to set me back some how I am writing what effects me this way

        I’m short for breath still so I’m not too good at controlling my breathing but will do my best.
        Was you have depersonalization and derealisation all the time or did it come in huge waves
        Thanks 🙂

        • Lukasz August 17, 2019 at 2:29 pm

          Jason,

          No worries. We’re here for you whenever you need us.

          If I remember correctly, it affected me for long periods of the day. It was with me for most of the day and into the night but I’m sure I had moments when it eased up for some time. I remember really struggling with it…

          Good luck with the magnesium. I hope it brings you relief.

        • Lukasz August 17, 2019 at 2:34 pm

          Also, I’m not sure if you’re into creativity, but working on projects helped me get my mind off of things. If you’re able, I recommend taking to art or just creation of any kind. It’s good for the soul.

        • L August 17, 2019 at 4:27 pm

          I couldn’t agree more. There was a long period…over a year, where I was incapable of doing much more than being a lump on the couch. But once I was able, it did do creative things. It is very calming and the focus it takes help to take your mind off other things.

      • Lukasz August 17, 2019 at 2:15 pm Reply

        Aaron,

        It’s hard to say whether it caused a setback or helped me. If can obviously be one and not both, but I have no idea if they helped or made matters worse. I’ll probably never know. The reason I did them in the first place was because I was hoping that they would be a sort of “quick fix”, well, it turns out they weren’t because I’m still far from recovered.

        You mentioned earlier that a lot of people seem to recover within 1 to 2 years and resume their life. Well, it’s been nearly 5 for me and I’m nowhere near a recovery. This begins to affect the mind since you want to be one of those “lucky” ones who took only a year or two to recover. As you said, the longer this drags on, the more demoralizing it becomes.

        Re: the antifungal. Was it a cream? Do you happen to know the name of it? Are you certain it was this and not something else that caused you to have a severe setback? I ask, because as you know, feeling well is not something we’re used to post-floxing, and there doesn’t have to be a trigger. Just the illness being active and manifesting itself via symptoms.

        • Azz August 17, 2019 at 8:27 pm

          I’m not sure if it was the anti fungal or not but the setback happened at the same time, or maybe I inadvertently consumed some dairy from New Zealand who regularly use that poison in their livestock. I really feel for you being like this for 5 years, it’s really unimaginable. My worst fear of fears is that for those of us so severely affected it will be permanent, but if I think of that I’m on the edge of just giving up. Do you still feel some improvement year on year?

        • L August 17, 2019 at 11:35 pm

          Azz, I was as severe as they come. Head to toe damage. Damage to my eyes; my heart; peripheral neuropathy; horrifying olfactory nerve damage where everything in the world asphyxiated me; mitochondrial damage (that I believe is responsible for the gasping for each breath for months); psychiatric issues; devastated gut with the loss of 1/4 of my body weight; hair coming out in chunks; hives covering my torso; tinnitus; torn meniscus in both knees; and a dozen more. I still have some vision issues and the tinnitus, but I am pretty much back to doing everything I did before. Please don’t think you can’t/won’t get better. (I am 4 1/2 years out.)

        • Azz August 17, 2019 at 10:59 pm

          Sorry I forgot the name of the anti fungal, luckily I’ve managed to keep the infection under control with coconut oil which is far safer.

        • Lukasz August 18, 2019 at 2:48 pm

          Hopefully not. I mean, there are still many options available to us and many new ones coming on the market. With each passing year, there’s more and more options for us to seek out as far as repairing the various injuries is concerned. For example, I don’t think the detox supplement I’m currently taking was around some years ago, but it’s here now and available to us because of the demand for cellular detoxification. There are plenty of other supplements which weren’t in high demand before, but are now flying off the shelves because they’re needed by so many. A couple of examples are probiotics and colostrum. So what I’m getting at, is that until we’ve tried everything there is to try, then we can’t declare our state a permanent one because any one of these supplements can have a dramatic effect to stop, and even reverse the disease.

          For sure. If I’m to reflect back at how I was in year 1 through 4, then absolutely, I’ve come a long way. Do I wish I was further along in my recovery? Certainly, but like you and L., I was one of the severely affected. I’m talking about 3 different, VERY potent antibiotics on the market, in Clarithromycin, Metronidazole and Ciprofloxacin, and not to mention the proton-pump inhibitor (PPIs), Pantoprazole, which is pretty potent on its’ own. If I had just the one and not the rest, there’s a good chance that I might have been more or less recovered at this point. Who knows? All I know is that I’m much better off today than I was in years past and certainly MUCH better off since I began the detox supplement. Something tells me my body was overflowing with toxins and heavy metals and that extracting them has allowed my body to finally have a breather.

        • natdavauer August 19, 2019 at 8:00 am

          Aaron,
          Early on I took flucanazole shortly after everything started. I didn’t make the fq connection for over a year as to what was wrong with me. But reading and thinking I had a mold problem, I took this antifungal. It was the first thing to have an effect on how I felt. And it was the only thing for a year after that that had an obvious effect. I took it a couple more times after the first time because I knew it would have some kind of effect. So I knew whatever was wrong had something to do with fungus and yeast. I think what I’ve learned is that it just illustrated the microbiome is destroyed and like antibiotics, antifungals will cause symptoms to change and shift. The last time I took it though it seemed to cause major heart issues which I suffered for a year-and-a-half after that. I had some heart involvement but this was just horrifying and although I can’t be sure the fluconazole caused it, it does seem like it did.

          People think the microbiome is the bacteria in your gut but really it is the balance of bacteria, fungus, and viruses. It is all 3 all the time. A big dose of a very strong antibiotic will shift that balance dramatically because it only kills bacteria leaving two-thirds of the microbiome unbalanced and causing some form of dysbiosis which seems to be able to leave you with a infinite amount of variation in symptoms. I’ve spent a lot of time interacting with people who come to dysbiosys from many different directions and there is so much overlap in the types of chronic illnesses people suffer. I’m not at all surprised an antifungal had a large effect on you because your microbiome is almost surely unbalanced and that shifted the balance even more. The problem is that there seems to be no way to know how to shift it in the right direction. Sometimes antibiotics help sometimes not. Sometimes antifungals help sometimes not. Sometimes antivirals help sometimes not. what you may have seen me say on here before is what I’ve come to believe is the only way to restore the correct human balance of these three things in the gut. That is fecal microbiota transplant. Restoring microbiome with a pre-existing healthy balance of these three things from someone else’s stool makes perfect sense even though it seems a little gross.

          I’ve done over 30 fmt’s now and credit them with many improvements. I actually believe I should do more and I think it would make me better. Sometimes when it’s a simple c-diff infection one fmt can cure you. The rate is actually quite high. But in the case of massive dysbiosis I don’t think it’s unusual to need very many over the course of a long time to restore what took decades to build.

          anyway, let me know if you have more questions about it. I know it’s intimidating and seams kind of gross but honestly, I urge everyone who sees any involvement of the gut to really look into it and try to make the leap.

        • Azz August 19, 2019 at 10:16 pm

          natdavauer, thanks for letting me know, I would have tried it already but I’m really struggling financially, I’m literally only getting enough welfare to pay for the ever increasing rent thanks to the inept goverment. And I can’t get a job because of the vacant last 2 years.

        • Azz August 19, 2019 at 10:08 pm

          That’s great to hear, I’m definatley going to give that supplement a go

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