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

 

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

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

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

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

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

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

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

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

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

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

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

How It All Began

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

ER Visit On Day 2

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

The First Symptoms

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

Enter Ciprofloxacin

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

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

-Abrupt wakeup

-Insomnia

-Depression

-Anxiety

-Lack of energy

-Weakness

-Muscle pain

-Joint pain

-Tendon pain

-Inflammation

-Eyelid twitch

-Burning sensation in the ear

-Sensitivity to light / sunlight

-Dry heaving

-Stomach / GI issues

-Urinary tract issues

-Muscle spasms

-Post-nasal drip

-Chest pain

-Heart palpitations

-Loss of appetite

-Major weight loss

-Psychosis

-Depersonalization

-Derealisation

-Paranoia

-Panic Attacks

-Suicidal Thoughts

-Fear of Dying

-Brain fog

-Confusion

-Numbness

-Apathy

-Irritability

-Depersonalization

-Derealisation

-Hearing loss

-Tinnitus (Ringing in the ears)

-Blurred vision (Double vision)

-Peripheral vision problems

-Back floaters in the field of vision

-Pressure near the frontal lobe

-Difficulty conducting activities

-Memory loss (Short / Long-term)

-Inability to form new memories

-Inability to concentrate / focus

-Inability to process information

-Inability to make a decision

-Inability to learn new tasks

-Inability to feel all emotions

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

Adverse Drug Reaction

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

Healing From Toxicity

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

# 1 – Obtain Support

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

# 2 – Positive Mindset

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

# 3 – Finding Forgiveness

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

# 4 – Fitness Club / Sauna

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

# 5 – Supplementation

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

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

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

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

# 5 – Other Therapies

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

# 6 – Rebuilding Yourself

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

One Year Update (February 2016)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I wish you all a speedy recovery.

Two Year Update (February 2017)

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

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

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

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

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

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

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

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

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

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

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

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

List of things that have helped me along in 2016:

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

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

  1. Natural Spring Water [No Fluoride]

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

  1. Fruits [Various]

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

  1. Vegetables [Various]

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

  1. Nuts [Various]

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

  1. Carrots [Organic]

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

  1. Avocados [Organic]

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

  1. Vitamin C [Powder]

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

  1. Spirituality / Mythology / Philosophy

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

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

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

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

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

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

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

-Lukasz

 

5 Year Update – November 2019

 

Hello Friends,

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

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

 

-Lukasz

 

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

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

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

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

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

      Isn’t it incredibly expensive?

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

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

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

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

        • Lukasz December 6, 2019 at 1:05 pm

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

        • Azz December 6, 2019 at 8:52 pm

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

        • Lukasz December 6, 2019 at 9:11 pm

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

        • Azz December 7, 2019 at 3:09 am

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

        • Lukasz December 11, 2019 at 11:32 am

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

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

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

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

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

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

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

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

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

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

        • Azz December 18, 2019 at 8:31 pm

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

        • L December 18, 2019 at 11:43 pm

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

        • Azz December 19, 2019 at 5:29 am

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

        • L December 19, 2019 at 11:23 am

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

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

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

        • Azz December 19, 2019 at 5:47 pm

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

        • L December 19, 2019 at 6:05 pm

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

        • natdavauer December 21, 2019 at 8:22 am

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

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

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

        • L December 21, 2019 at 9:00 am

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

        • natdavauer December 21, 2019 at 9:28 am

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

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

        • L December 21, 2019 at 9:58 am

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

        • L December 21, 2019 at 9:01 am

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

        • Lukasz December 20, 2019 at 10:30 am

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

        • Azz December 20, 2019 at 5:00 pm

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

        • Lukasz December 20, 2019 at 10:37 am

          “All disease begins in the gut.” -Hippocrates

        • Lukasz December 20, 2019 at 6:41 pm

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

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

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

        • Azz December 20, 2019 at 7:49 pm

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

        • L December 20, 2019 at 8:07 pm

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

        • Lukasz December 20, 2019 at 9:46 pm

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

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

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

          Just my two cents.

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

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

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

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

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

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

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

    I am 2 years out.

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

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

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

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

        • Lukasz December 15, 2019 at 1:19 pm

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

        • Laram December 15, 2019 at 4:46 pm

          thank you lukasz, I wish you that too

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

    lukasz, did you think of fecal transfer?

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

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

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

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

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

    Hi Lukasz,

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

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

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

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

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

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

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

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

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

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

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

        • natdavauer December 23, 2019 at 9:28 pm

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

        • L December 23, 2019 at 10:18 pm

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

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

        • Azz December 23, 2019 at 11:09 pm

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

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

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

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

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

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

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

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

        • Jason December 31, 2019 at 5:44 pm

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

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

        • Azz January 2, 2020 at 3:35 am

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

        • Jason January 2, 2020 at 5:00 pm

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

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

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

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

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

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

          Hows your symptoms going into the new year ?

        • Azz January 4, 2020 at 3:52 am

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

        • Jason January 4, 2020 at 5:09 am

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

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

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

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

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

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

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

        • natdavauer January 4, 2020 at 8:18 am

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

        • L January 4, 2020 at 11:47 am

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

        • Jason January 7, 2020 at 4:32 pm

          That’s the thing nat

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

          I miss it tbh

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

        • Jason January 10, 2020 at 3:40 pm

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

        • L January 10, 2020 at 4:01 pm

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

        • natdavauer January 12, 2020 at 8:16 am

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

        • L January 12, 2020 at 11:23 am

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

        • Azz January 19, 2020 at 9:28 pm

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

        • L January 19, 2020 at 10:43 pm

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

        • Azz January 23, 2020 at 2:26 am

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

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