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

Lukasz

*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.

489 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.

  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.

  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.

  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

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