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

 

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

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

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

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

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

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

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

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

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

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

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

How It All Began

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

ER Visit On Day 2

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

The First Symptoms

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

Enter Ciprofloxacin

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

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

-Abrupt wakeup

-Insomnia

-Depression

-Anxiety

-Lack of energy

-Weakness

-Muscle pain

-Joint pain

-Tendon pain

-Inflammation

-Eyelid twitch

-Burning sensation in the ear

-Sensitivity to light / sunlight

-Dry heaving

-Stomach / GI issues

-Urinary tract issues

-Muscle spasms

-Post-nasal drip

-Chest pain

-Heart palpitations

-Loss of appetite

-Major weight loss

-Psychosis

-Depersonalization

-Derealisation

-Paranoia

-Panic Attacks

-Suicidal Thoughts

-Fear of Dying

-Brain fog

-Confusion

-Numbness

-Apathy

-Irritability

-Depersonalization

-Derealisation

-Hearing loss

-Tinnitus (Ringing in the ears)

-Blurred vision (Double vision)

-Peripheral vision problems

-Back floaters in the field of vision

-Pressure near the frontal lobe

-Difficulty conducting activities

-Memory loss (Short / Long-term)

-Inability to form new memories

-Inability to concentrate / focus

-Inability to process information

-Inability to make a decision

-Inability to learn new tasks

-Inability to feel all emotions

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

Adverse Drug Reaction

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

Healing From Toxicity

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

# 1 – Obtain Support

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

# 2 – Positive Mindset

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

# 3 – Finding Forgiveness

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

# 4 – Fitness Club / Sauna

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

# 5 – Supplementation

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

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

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

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

# 5 – Other Therapies

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

# 6 – Rebuilding Yourself

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

One Year Update (February 2016)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I wish you all a speedy recovery.

Two Year Update (February 2017)

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

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

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

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

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

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

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

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

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

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

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

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

List of things that have helped me along in 2016:

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

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

  1. Natural Spring Water [No Fluoride]

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

  1. Fruits [Various]

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

  1. Vegetables [Various]

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

  1. Nuts [Various]

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

  1. Carrots [Organic]

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

  1. Avocados [Organic]

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

  1. Vitamin C [Powder]

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

  1. Spirituality / Mythology / Philosophy

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

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

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

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

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

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

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

-Lukasz

 

5 Year Update – November 2019

 

Hello Friends,

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

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

 

-Lukasz

 

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

1,007 thoughts on “Lukasz’s Story – Clarithromycin and Ciprofloxacin Poisoning, and Healing

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

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

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

      Isn’t it incredibly expensive?

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

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

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

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

        • Lukasz December 6, 2019 at 1:05 pm

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

        • Azz December 6, 2019 at 8:52 pm

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

        • Lukasz December 6, 2019 at 9:11 pm

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

        • Azz December 7, 2019 at 3:09 am

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

        • Lukasz December 11, 2019 at 11:32 am

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

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

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

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

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

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

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

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

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

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

        • Azz December 18, 2019 at 8:31 pm

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

        • L December 18, 2019 at 11:43 pm

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

        • Azz December 19, 2019 at 5:29 am

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

        • L December 19, 2019 at 11:23 am

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

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

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

        • Azz December 19, 2019 at 5:47 pm

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

        • L December 19, 2019 at 6:05 pm

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

        • natdavauer December 21, 2019 at 8:22 am

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

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

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

        • L December 21, 2019 at 9:00 am

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

        • natdavauer December 21, 2019 at 9:28 am

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

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

        • L December 21, 2019 at 9:58 am

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

        • L December 21, 2019 at 9:01 am

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

        • Lukasz December 20, 2019 at 10:30 am

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

        • Azz December 20, 2019 at 5:00 pm

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

        • Lukasz December 20, 2019 at 10:37 am

          “All disease begins in the gut.” -Hippocrates

        • Lukasz December 20, 2019 at 6:41 pm

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

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

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

        • Azz December 20, 2019 at 7:49 pm

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

        • L December 20, 2019 at 8:07 pm

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

        • Lukasz December 20, 2019 at 9:46 pm

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

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

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

          Just my two cents.

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

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

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

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

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

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

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

    I am 2 years out.

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

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

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

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

        • Lukasz December 15, 2019 at 1:19 pm

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

        • Laram December 15, 2019 at 4:46 pm

          thank you lukasz, I wish you that too

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

    lukasz, did you think of fecal transfer?

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

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

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

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

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

    Hi Lukasz,

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

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

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

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

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

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

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

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

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

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

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

        • natdavauer December 23, 2019 at 9:28 pm

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

        • L December 23, 2019 at 10:18 pm

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

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

        • Azz December 23, 2019 at 11:09 pm

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

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

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

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

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

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

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

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

        • Jason December 31, 2019 at 5:44 pm

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

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

        • Azz January 2, 2020 at 3:35 am

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

        • Jason January 2, 2020 at 5:00 pm

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

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

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

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

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

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

          Hows your symptoms going into the new year ?

        • Azz January 4, 2020 at 3:52 am

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

        • Jason January 4, 2020 at 5:09 am

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

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

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

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

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

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

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

        • natdavauer January 4, 2020 at 8:18 am

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

        • L January 4, 2020 at 11:47 am

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

        • Jason January 7, 2020 at 4:32 pm

          That’s the thing nat

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

          I miss it tbh

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

        • Jason January 10, 2020 at 3:40 pm

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

        • L January 10, 2020 at 4:01 pm

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

        • natdavauer January 12, 2020 at 8:16 am

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

        • L January 12, 2020 at 11:23 am

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

        • Azz January 19, 2020 at 9:28 pm

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

        • L January 19, 2020 at 10:43 pm

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

        • Azz January 23, 2020 at 2:26 am

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

        • L January 23, 2020 at 11:17 am

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

        • natdavauer January 23, 2020 at 11:43 am

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

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

        • L January 23, 2020 at 11:57 am

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

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

        • Azz January 24, 2020 at 8:39 pm

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

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

    Wasn’t clear I was talking about fasting not ashwaganda

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

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

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

        Posted but can’t see the comment..

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

        Answer posted below

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

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

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

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

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

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

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

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

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

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

        • erik February 13, 2020 at 10:31 am

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

        • erik February 17, 2020 at 10:35 am

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

        • Azz February 18, 2020 at 7:52 am

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

        • erik February 18, 2020 at 8:45 am

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

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

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

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

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

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

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

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

        • natdavauer February 24, 2020 at 8:10 am

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

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

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

        • natdavauer February 25, 2020 at 6:21 am

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

        • natdavauer March 2, 2020 at 7:09 am

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

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

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

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

        • Jeff March 4, 2020 at 12:07 pm

          Hey L,

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

        • L March 4, 2020 at 1:37 pm

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

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

        • Jeff March 4, 2020 at 2:29 pm

          Hey L,

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

        • L March 4, 2020 at 8:15 pm

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

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

        • Jeff March 6, 2020 at 2:39 pm

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

        • natdavauer March 6, 2020 at 8:43 pm

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

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

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

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

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

        • Jeff March 4, 2020 at 2:45 pm

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

        • L March 4, 2020 at 4:43 pm

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

        • natdavauer March 5, 2020 at 7:40 am

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

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

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

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

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

    Hi Nat,

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

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

    Hey Nat,

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

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

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

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

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

        • natdavauer March 15, 2020 at 10:17 am

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

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

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

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

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

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

        • Jeff March 27, 2020 at 11:08 am

          Hey Chris,

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

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

        Hey Nat,

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

        • natdavauer March 19, 2020 at 7:20 am

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

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

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

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

        • Azz March 23, 2020 at 11:17 pm

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

        • natdavauer March 24, 2020 at 7:02 am

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

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

        • Jeff March 24, 2020 at 12:04 pm

          Hi Nat,

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

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

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

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

    *HPA axis was what I meant to write

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

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

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

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

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

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

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

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

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

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

        • natdavauer March 28, 2020 at 2:21 pm

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

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