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fqtoxicity · 8 years ago

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Bittersweet Validation: Thoughts on my Muscle Biopsy, has been published on My Quin Story

New Post has been published on http://www.myquinstory.info/muscle-biopsy-experience/

Bittersweet Validation: Thoughts on my Muscle Biopsy

“The chances of the biopsy showing anything are pretty low, if at all,” the neurologist said to me as he walked out the door. I looked unknowingly at my wife as his words caused me to briefly reflect on the history that brought me here.

My symptoms started in 2007 after taking 750 mgs of Levaquin for 21 days. No, I did not have a shotgun reaction where all the symptoms come on at once, but instead my symptoms all came on slowly. But, looking back, the contrasting before and after Levaquin could not be more stark:

Before and After

Before Levaquin: I had a career in law enforcement and I was physically large and very active. At 6’ 4” and 243 lbs I would bicycle, on average, 7 -10 miles a days, and bench press 300 lbs. And no, I wasn’t some muscle-bound knucklehead either. My I.Q. ranged everywhere from 145 to 160 depending on which test (Stanford–Binet through Raven’s Matrices) and I had completed two college degrees in disparate fields. The worst health problem I experienced was the occasional knee problem, from and old track injury in high school, and GERD, from drinking too much coffee at work.

After Levaquin: Tendinitis, tendinosis, small fiber neuropathy, mild denervation of distal muscles, two heart attacks (yes two), gastroparesis, chronic fatigue, and mitochondrial dysfunction. These are the main diagnoses and does not include the numerous other small issues that affect us post floxing.

Big difference, isn’t it? Even the heart issues I know were caused by Levaquin. You could be thinking that I could have had heart disease brought about by lifestyle or genetics not brought on by the Levaquin, but for the most part, you would be wrong. You see, prior to my floxing, I was provably healthy. I did not drink, smoke, or engage in otherwise naughty health habits. Arguably, you may have found me a bit boring (not that I didn’t engage in a bit of revelry in my younger days) but I could readily attest that I was not diabetic, I ate healthy, and like I mentioned above had a routine exercise schedule.

In addition, four years before my floxing I had a nuclear cardio stress test and heart scan, because I wanted to increase my high intensity workouts. Being in my early forties, my doctor wanted me to have the test to rule out any abnormalities, such as arterial heart blockages (remember Jim Fixx) before I increased my high intensity workouts. The result was a clean bill of health, when it came to my cardio system, but I digress.

I have had the blessing of having two excellent primary care physicians over the last decade, with the first one being spectacular (no, he was not the one who floxed me, that was a urologist). The second primary care, and also my current one, is not completely ‘on board’ with the fluoroquinolone toxicity, but he agrees that in my case I was delivered a “one – two punch” where the Levaquin initiated some very unpleasant problems in my body.

Back to Neurology

Despite fasciculations, muscle fatigue, mild atrophy, and neuropathy, numerous EMG’s and NCV tests showed no abnormalities. That changed somewhat in 2010 when my neurologist, frustrated he could not find anything, sent me to the University of Chicago’s Peripheral Neuropathy clinic. Again my EMG & NCV came back negative, as did any other tests with reasons for my symptoms, except for one. The performed a nerve punch biopsy on my right thigh and ankle. Send off to a lab called Therapath in New York, the results came back abnormal.

The nerve biopsy detected ‘significantly reduced small nerve fibers’ and they gave me diagnosis of peripheral neuropathy (polyneuropathy). Interestingly enough, the pathology on the tissue showed no amyloid deposits or micro-inflammation. One of the neurologists who did the nerve punch said the damage was indicative of a toxic exposure, such as seen with heavy metals, yet all my testing showed no exposure. Despite my suggestions and even protestations, no one at the University of Chicago, would even entertain the idea that Levaquin cause this damage.

My symptoms continued to progress with severe gastrointestinal problems manifesting and the diagnosis of Gastroparesis.

In 2013 a repeat EMG at my neurologist’s office started showing some subtle changes to my nervous system. Their EMG showed mild to moderate denervation of the in my distal muscles. During a follow up appointment to discuss the EMG findings, the specter of mitochondrial problems was brought up in the conversation and my neurologist suggested that I see a mitochondrial specialist. Even he was puzzled due to my previously robust health. My primary care agreed based on my symptoms, but unfortunately my insurance company denied the referral, so I was left to work within my local system.

My primary care then referred me to the Illinois Neurological Institute (INI), located in Peoria Illinois, and covered by my insurance. There I saw a neurologist who specialized in muscular dystrophy. I saw this neurologist several times before the option of a muscle biopsy was discussed. This neurologist was skeptical of most of my suggestions and in general was skeptical that mitochondria problems could be behind the health problems I was experiencing. To me it was obvious, but to him, since I exhibited no signs of large motor problems commonly seen in neuromuscular pathologies, I was a puzzle.

The muscle biopsy that we discussed would be an invasive procedure. It would be a deep open biopsy of vastus intermedius muscle of the left leg. The procedure involve about a three inch incision where they would harvest about an inch-long strand of deep muscle fibers. The neurologist reiterated that because I did not have an elevated CPK, the likelihood of my muscle biopsy showing any abnormality was very slim.

Sources of Information

It was then I reached out to the United Mitochondrial Disease Foundation (UMDF), Mito Action, and the Mitochondrial Medicine Society (MitoSoc). I was told by the UMDF that this biopsy holds the greatest promise for detecting mitochondrial problems over needle or punch biopsies. I shared this information with my neurologist who again said that it more than likely would come back negative, so be prepared for the possibility.

The UMDF told me that an elevated CPK was not necessary to capture mitochondrial problems. I shared my concerns with my general practitioner told me that the neurologist, who has his expertise in muscular dystrophy, was viewing my case through the filter of his experience. Admittedly, my neurologist said that they do not see many mito cases (even though most neuromuscular disease are indeed mitochondrial based).

After several months of deliberation, mainly over fears of how I would tolerate the procedure, I decided to go ahead with the biopsy. Oddly, my insurance company factored into the decision. They repeatedly denied my doctor’s request for genetic testing calling it ‘experimental’ and cost prohibitive. Ironically, the muscle biopsy was going to cost much, much more than the genetic testing.

I had quite a bit of anxiety about the procedure since I do not metabolize drugs well since floxing, but I went ahead with the procedure on February 7th, 2017, a deep open muscle biopsy of the left vastus intermedius. I tolerated the procedure fairly good and was told that it would take several weeks to analyze the tissue.

The week before the procedure I am sure I became an annoyance to the neurosurgeon’s nurse. I wanted to make sure that they performed the correct testing on the muscle tissue so I forwarded them lists of tests taken from the UMDF and MitoSoc websites and pestered them until I was sure that the pathologist was on the same page.

Finding a Culprit: Bittersweet Validation

After several weeks, I was contacted by my neurologist’s nurse who said the pathologist found some abnormalities. The pathologist said they did not find any red ragged fibers normally scene in mitochondrial disease but they did find cytochrome oxidase negative fibers which are indicative of mitochondrial dysfunction often seen in mutated or damaged mitochondria. They recommend the muscle tissue get sent off to a University lab for more in-depth testing which will take about 8 weeks.

Since then I have been researching the findings. I do know we are on the right track as the findings do explain my symptoms. We just need to dig a little further in the genome and the mitochondrial metabolism to uncover some more answer.

After so many unremarkable tests, and so many years, some of the bigger pieces of the puzzle for me are starting to fall into place. One floxy friend told me that the results must be ‘bittersweet validation’. I guess that would be a good way of putting it.

If another floxy undergoes this type of procedure looking for answers, I would be interested in hearing their results and experiences.

Testing Resources:

http://www.mitosoc.org/tissue-testing

http://www.umdf.org/lab-evaluation/

#Advocacy #Biopsy #Gastrointestinal #General Medical #Genetics #mitochondrial

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bliss1970 · 6 years ago

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On the anniversary of fours years of being damaged and disabled by leveaquin, cipro, avelox and flagyl. Yes I was given high doses of all of these in a 2-3 month period. Yes each dr knew what I was given before they gave me each new prescription. I was never warned of the possible side effects. What I have gone through and my husband has gone through being my caretaker is more difficult then anyone that hasn’t been in a similar situation can understand. Please read this please learn from me and wake the heck up!!! Also this took me over a month to write. I have two choices: depressed it took me a month to write this or grateful I pushed through the pain to get it done!!!!!

I have learned the following:

To hear you must learn what it feels like to be truly silenced. Not just by people that you choose to have in your life who are jerks but by an entire system. To bang against doors and been seen as a dirty secret and feel what it is like to have a system tell you we don’t care please go away and die.

Don’t tell me I’m wrong because that’s how I’ve been made to feel and there are many floxies who do give up because of mental damage of the drugs it’s been proven to cause phycological damage added to that damage is how the medical system treats them. If you haven’t been damaged by big pharma then you have no clue of the cruelty they unleash on you. Each suicide is murder and I have fought my own demons because this shit does horrible things to people. I’m too stubborn to let a piece of crap system steal who I am. It’s a struggle every day and I fight it because if I lose then they win in silencing one more person. Then they get to kill more people. Systems only change when enough people rise up and say no more.

It has enabled me too see things that most turn a blind eye to. That we as a society choose the easy route the path of cognitive dissonance.

Our let someone else solve it society has allowed corporations to have more rights then I do. We have normalized “side effects” to the point where we have allowed the companies that did this to me and countless other to say oh well it’s my fault and that I have no way of suing these companies. Yes I’ve talked to lawyers. Somehow if their medication damages me I’m told it doesn’t count and that I have to pay for it when I lost my ability to work. The whole they shouldn’t be responsible thing is crap. It is absolutely bs. It’s been told to us that it’s our problem if you have side effects or it’s falsely told to us it’s such a small amount that it doesn’t matter. The lives ruined don’t matter!!! We as a society have normalized this. Levaquin one of the drugs that I was given at a high dose for two weeks is now off the market. So I guess for the “greater good” it was pulled but the companies that pulled it aren’t being held responsible.

Let me be clear last year I was told by two drs who are familiar with this that it is unlikely I will ever heal. That western medicine doesn’t spend the money to heal side effects. The reason they don’t is because society allows it. I don’t want your pity I want you to wake the hell up.

I am still here and still going but I’ve also accepted the fact that this is my life. It’s not easy and for the rest of my life I can’t take care of myself. If I have an attack I can’t always understand what someone is saying to me. I know someone is speaking I see what’s occurring around me unless my eyes roll back into my head but depending on a number of things during my attacks I don’t always know what someone is telling me.My husband double checks everything he also checks on me while at work. I have 30 mins to respond or he will leave work to make sure I’m okay. It’s a toss up on how people interact with me anytime I go out in public. I still go outside even if I scream in public with no control of it and I smile not matter what the reaction. Yes it took a lot of tears to get to this point. It took more personal strength to deal with people laughing and refusing to help me. Yes it’s happened many times and I still smile at them because I have empathy for them. I feel so sorry for people who seek to judge me because they must have a really sad life when they project those emotions on to me. So I smile at them no matter what because I hope maybe the crazy disabled lady with the smile helps them face their own demons.

I am pretty positive and I have worked like crazy to get to where I am. I don’t want pity I hope you wake the hell up. Stop letting greedy people who gave corporations more rights then people have and pushed agendas that normalized actions and concepts where if you talk about them in isolation are stupid. If you want to defend it you are defending a company. The whole greater good bs is propaganda. FDA HAS LABELED WHAT HAPPENED TO ME AS AN ACTUAL DISABILITY YET AGAIN THE COMPANIES RESPONSIBLE FOR THE CREATION FOR THIS DISABILITY ARE NOT BEING HELD RESPONSIBLE. AGAIN MY DISABILITY IS CAUSED FROM A DRUG.

Talking about actual important subjects and not idle gossip is actually what we as a society should do. There is no such thing as the right place or time. That’s more idiotic propaganda about manners that we have normalized.

Please be captains of your health look into naturopathic treatments.

I can’t try a bunch of stuff because I react to what feels like everything makeup makes my face swell perfume can trigger attacks usually choking attacks followed by a rash and I now learned that Stevia can burn the top layer of skin off my lips completely. I’m more grateful for my life then I can ever explain. I have my ups and my downs both are normal and healthy.

I force myself to talk about all of this because society as a whole loves to defend the pharmaceutical industry. I have fought these 4 years to stop the medical system from dehumanizing me.

Stop being lazy we as a society allowed ourselves to be divided a long time ago. We have the power to believe in unity. I don’t believe in political parties, I believe in unity. I don’t care what religion you follow or if you even follow one, I care about what you practice when no one is looking. Stop falling for stupid bs that is meant to divide and look for common ground and support basic rights for everyone all those concepts lead to unity. Stop dehumanizing people!!!!!

If you actually read my rant, thank you and I bet I know who the three of you are..... 😂😂😂😂🤪😱🥰🤗🥰

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ask-the-swapfell-crew · 8 years ago

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God!floxy: where are you going?!? wait for me. [God!floxy tags along with the skele bros] why did you bring the human here?

*you see they're going to the castle*

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fqtoxicity · 5 years ago

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New Post has been published on My Quin Story

New Post has been published on http://www.myquinstory.info/covid-19-preventative-and-critical-care-management-protocol/

COVID-19 Preventative and Critical Care Management Protocol

Introduction

The entire world is currently on hold due to the coronavirus and I realize that it affects everyone’s lives in a negative fashion. For me, the effects have been far ranging. Personally, we have been isolated from loved ones and have even had someone in our extended family die, due to the virus. It has put current FQ research on hold, as the researchers that I was working with have had to refocus their efforts.

As most of my readers know, FQ Toxicity is a devastating syndrome that impacts each person in various ways. It changes a person’s perception on life, and it adjusts how they approach life in general. One of these ways is to do everything in one’s power to mitigate further risk from medications and diseases.

Floxed people are some of the most health conscious people I know, and with good reason. Many have bodies who are now in a more fragile state of health, so they do what they can to stay healthy and try to avoid getting any further illness or disease.

Prevention

One of the more common questions I get asked is, “what can I do to increase my chances to prevent from getting COVID-19?”

If you have searched the internet you know it is a confusing place. As the old saying goes, the opinions on COVID-19 are like belly buttons, everyone has one. And to listen to all those opinions, even ‘so-called’ expert ones, is an exercise in futility and confusion. It is like the weather in Illinois, give it a moment and it will change. Also, try this experiment, post an opinion on COVID-19 and see what happens. If you have been seeing the same things that I have, you will get numerous ‘expert’ opinions.

The internet has one big fault, well, actually two, but who is counting. Anyway, there is too much information, and it overwhelms the senses. Also, anyone can find any numbers of so-called expert sources to bolster their prejudices.

Recently the East Virginia Medical School’s (EVMS) released the Critical Care COVID-19 Management Protocol. This protocol is updated periodically to reflect current critical care knowledge. This is one of the better COVID-19 critical care management guidelines (even includes Vitamin C IV’s and other supplements) that I have seen.

Their motto is “If what you are doing ain’t working, change what you are doing.”

That is a motto that I can relate to.

As part of their Critical Care COVID-19 Management Protocol, they have preventative (prophylaxis) guidelines for supplements you can take at home. Let me throw in the caveat that I know that some Floxed people cannot take some of these supplements for various reasons, so you should use common sense and consult your trusted health care professional to tailor this list for your situation.

Prophylaxis

While there is very limited data (and none specific for COVID-19), the following “cocktail” may have a role in the prevention/mitigation of COVID-19 disease. While there is no high-level evidence that this cocktail is effective; it is cheap, safe and widely available.

Vitamin C 500 mg BID and Quercetin 250-500 mg BID

Zinc 75-100 mg/day (acetate, gluconate or picolinate). Zinc lozenges are preferred. After 1 month, reduce the dose to 30-50 mg/day.

Melatonin (slow release): Begin with 0.3mg and increase as tolerated to 2 mg at night

Vitamin D3 1000-4000 u/day

On a side note I want to give Selenium, Vitamin A, and S-acetyl-glutathione a strong consideration for addition.

Critical Care COVID-19 Management Protocol.

Those that know me, know that I am no friend of governmental medical agencies, however I will give credit where credit is due.

For the most part I believe that good COVID-19 emergency protocols, unfortunately, are still not being used here in Illinois (at least in the area I live in). We had an extended relative die of COVID recently who was older with no comorbidities and lived near Chicago. I am pretty sure after talking with family that something like this wasn’t followed.

The PDF version of this Critical Care COVID-19 Management Protocol would be good to have available. God forbid, if you would have to go to the ER for COVID-19, it would be a time of turmoil so having something to use as a guideline would be extremely helpful. I am not fully endorsing all the drugs listed, but this document could be used to facilitate conversations with your doctors to formulate an action plan or to determine if the facility you are at is competent enough to offer you the best medical care.

Here is the link to the PDF.

In Summary

My advice for floxies is still to try and do everything humanely possible to avoid getting COVID-19. I won’t go into the lengthy details but it can easily be proven that it is much more serious than the flu and should not be compared to the flu, it can have long term health impacts, even in healthy people, and can be very deadly for those in certain demographics. Don’t live in fear, but don’t take any unnecessary chanced. Humankind has been dealing with this for too short a period of time to fully know all the implications, and because of this we must err on the side of caution.

Having said all that, I still understand that people need to live and survive in this imperfect world.

I currently do not have any data about any chronically ill floxies who have contracted COVID-19. When I have some credible data to share from reliable sources about floxed COVID-19 cases, I will get that data out as soon as possible.

Please, be safe everyone.

#Advocacy #Coronavirus #COVID-19 #Supplements

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fqtoxicity · 5 years ago

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New Post has been published on My Quin Story

New Post has been published on http://www.myquinstory.info/the-fluoroquinolones-inconvenient-truth/

The Fluoroquinolone's Inconvenient Truth

If you are newly floxed, let’s say two years or less, or if you are in a bad space emotionally it’s probably best that you pass this article over. Seriously.

When I started this website years ago, I was faced with an overwhelming about of data. Here I was, blogging about fluoroquinolones (FQ’s) as a cathartic release, unprepared for the road on which I was about to travel. Literally, I was totally unprepared to face the number of people who were travelling, more or less, the same road. I knew a lot of people had experienced these adverse drugs events (ADE’s), but the actual numbers ended up beyond my imagination. As a matter of fact, prescription drugs are the third leading killer of people in the U.S. and Europe, only second to heart disease and cancer (1), the the FQ’s are a big part of that.

ADE’s have complex manifestations, and the FQ’s are the poster children of complex manifestations. The modern medical establishment has a very tough time recognizing ADE’s from pharmaceuticals, even from those drugs that are likely to create ADE’s, so asking them to recognize FQ ADE’s is nearly impossible.

The FQ class of antibiotics are capable of setting into motion an idiopathic syndrome that causes numerous symptoms, of which can number into the several hundred. The adverse events of FQ’s are often disparate and by all definitions outrageous to a classically trained doctor. Although I am not making excuses, there really is no way to quantify this type of insidious damage based on the training of most doctors.

Mining Data

Mining data from this realm is challenging to say the least, and, the people who are supposed to be doing it, aren’t. That, unfortunately, leaves schmucks like me left to do the dirty work.

Regulatory agencies and pharmaceutical companies, despite now having access to decades of FQ prescribing data, are dropping the ball. One could easily surmise that they are doing this intentionally because if they did, we would uncover many ugly inconvenient truths.

I, regrettably, have been wading waist deep in this anecdotal collection of FQ ADE information since I started this website since 2009, but at least some of it has come to fruition. Scholars like Dr. Bennett, Dr. Noble, Dr. Golomb, and others, have tapped me for data in one aspect or another, and I have contributed to the occasional academic paper on FQ’s.

I have found, more often than not, that the FQ data trail leads us into areas where we do not want to go; areas that we would normally avoid, if it were up to us. One of these ugly inconvenient truths that I would like to away from but keeps rearing its ugly head is what the medical community refers to as ‘late effects.’

Late Effects

Late effects are defined by the National Cancer Institute as health problems that occur months or years after treatment has ended (1).

Actually there are only a few classes of drugs that are recognized by the medical establishment as causing late effects. Among them are topoisomerase inhibitors that are used in anti-cancer therapy (chemotherapy) such as etoposide, teniposide, doxorubicin, daunorubicin, mitoxantrone, and amsacrine (2).

Yet, the FQ’s are topoisomerase II inhibitors.

See the disconnect?

We expect late effects in some patients who take systemic Topoisomerase Inhibitors for cancer, but the medical system totally dismisses them in patients who take Topoisomerase II Inhibitors as antibiotic therapy.

The late effects are there, but the medical establishment isn’t looking for them.

Like ripples on a pond, these late effects are spreading out throughout society, and not getting connected back to the FQ’s.

Ever since my entrance into this hellish word called floxing, I have been loosely documenting cases of individuals who were exposed to FQ’s, assumed a recovery, and then developed ‘late effect’ much later on, or those who took and FQ and had an unremarkable course of therapy and then later, much later, developed health problems.

Falsehoods

There are two falsehoods that have become apparent to me.

The first, and the most obvious to those who have been personally impacted by the FQ’s, is that the general population is being sold a false bill of goods that these drugs are safe. Many doctors, researchers, and the like, find these drugs are impeccably safe. Why? Because they are not looking for the long term collateral damage. Their eyesight for ADE’s is myopic and narrow.

The second, and the most unpleasant one, if you suffered from an adverse event, no matter how small, you are home free once you recovered.

Initially, years ago I thought that the pools of late arrivals (those suffering from what is referred to as delayed adverse events), and those returning after having apparently recovered, were both very small. Regrettably, time has shown me that these pools are much larger than I previously thought. And that is just from the people who ‘connected the dots’ linking their new health problems to the FQ’s they had much earlier.

This begs the hypothetical question, “How many people don’t actually make the connection?” The obvious answer is that we’ll probably never know as the data gets lost in the noise, and the medical establishment will never blame it on the antibiotic…. ever.

The world’s belief structure about the FQ’s, driven by the medical community, is built on false narratives about safety that frankly don’t exist.

Cognitive Dissonance

There are many reasons why the FQ’s have fallen so handily into a protective niche in our society: they came on the scene at the perfect time before our knowledge of mitochondria was more advanced, their method of action is poorly understood by the medical community, their unique method of action allows for the development of late effects which separate cause and effect, and medical cognitive dissonance, just to name a few.

I do think that most doctors suffer from cognitive dissonance.

Cognitive dissonance is a universal human phenomenon and it is based on the assumption that people want consistency between their expectations and reality. Because of this they contort their thinking into knots to make that happen. In the case of ADE’s, to preserve the notion that our efforts help rather than hurt, their impulse is to attribute the harm to something other than their intervention.

Obviously, a cognitive dissonant attitude drives the failure to connect ADE’s to the guilty medications. This not only fails the patients, but again it fails in reporting statistics which leads the FDA to grossly underestimate the ADE’s experienced by patients. The bottom line is that doctors and patients believe that the FQ’s are much safer than they really are…and they cling to this belief, despite evidence to the contrary.

Unpleasant Truths

Today, however, one of my biggest demographics is individuals who have assumed complete healing and have returned. My data also shows that when they return, many are less vocal than before; they tend to shun FQ related social media and other outlets, so the community doesn’t hear a lot of the stories told by these unfortunate souls. However, in my little niche, I do, and with regular frequency.

Many times, returning individuals end up in more specific communities such as chronic fatigue, peripheral neuropathy, mitochondrial, neurological, and on and on. They have one thing in common however, the FQ’s were the initiator.

The detractors to this inconvenient truth are varied, from those entrenched in our political and medical system, to those new to this horror, and to some who are in self-denial.

With hindsight starting to allow us to peer into the once fog shrouded statistics, we start seeing the ugly anecdotal ties to Parkinson’s, ALS, Alzheimer’s and a whole host of other, albeit less serious but still terribly disabling pathologies.

When you look at the recovery stories through this lens, the veracity of the statistics takes on a whole new dimension. People’s recovery, like levels of pain, are subjective, since no one uses the same standard to describe their recovery. I often get asked the question “What does a recovery look like?”

When you weed out the ones who were probably never floxed in the first place (those who recovered from death’s door in six months or less and are back jogging), or those suffering some other health malady with overlapping symptoms, and then analyze the scant long term data that we have, the picture is . . . not real pleasant.

For those poor returning souls this situation creates a conundrum. Their message, along with their data, gets lost, delegitimized. It is an inconvenient truth that gets relegated to the dark fringes of the FQ community. The medical establishment treats these patients the same way, like pariahs, especially if the try to blame their ADE’s on FQ’s. This often forces drastic measures.

One floxie who I will call ‘Bill’ told me his story which epitomizes this situation:

It was about a year and a half or so after floxing, Bill started to feel great. He never really was that active in the online support community, feeling a bit out of place or uncomfortable in most conversations. He remembers telling a few people he was feeling better, so he left, setting the FQ community firmly in his rear view mirror. He was happy to have this bad nightmare behind him. He continued to carry on with his life, yet over the next several years he realized something was not right. Unfortunately, he started experiencing unusual fatigue and eventually developed some neurologic symptoms. In the back of his mind he knew exactly where these problems stemmed from. Again, most doctors were of no help so he sought out a new doctor, but with a different twist. Frustrated and wanting to get some help, Bill took a drastic step, he lied to his new doctor, telling him that he was suffering from late effects from chemotherapy that he had years earlier. Bill knew this proposition was dicey and that he would have to maintain the façade, however, for the first time, he received some recognition, instead of a blank stare.

Time will tell where this leads him. In a sense, Bill wasn’t lying. He did in fact have a Topoisomerase II inhibitor, he had Levaquin.

To his body, metabolically he received a course of chemotherapy.

Bill, who thought he was home fee, fell back into the black hole of long term collateral damage from floxing.

For many, calling Bill’s story rare or unusual makes them feel better.

The inconvenient truth is that Bill’s story is not rare or unusual. The messages of toxic positivity, which I wrote about here, take away from the true devastation that these drugs cause. Regrettably, medical professionals and policy makers gravitate towards recovery messages and use them as excuses to look away. This feeds into the cognitive dissonance that I mentioned earlier. The resulting output is the belief that serious long lasting damage is rare and that these drugs are safe.

My premise; its all an illusion.

FQAD outcomes are blurry at best. There is no long term tracking data done of the floxed population. Although my capabilities are limited, my statistics don’t paint a pretty picture.

This begs another hypothetical question and one that I, like I mentioned earlier, get confronted with on a regular basis, “What does a true recovery from the FQ’s look like?” Many times I am asked to speak comfort, when I can’t.

In reality, how many individuals go on to develop other health conditions years down the road related to the FQ’s? I think the truth would shock us all.

What about the athlete who can no longer perform in peak condition? Or a police officer that can’t chase after a suspect? A secretary who can no longer ‘concentrate’ at her job? A typist who can’t type, a jogger who can’t jog, or a singer who can’t sing? You get the picture.

Walking Wounded

In first aid and triage they have a phrase called the walking wounded. These are injured persons who are of a relatively low priority. How many FQ related walking wounded are in our society?

If politicians and doctors believe that FQ toxicity is a recoverable condition, it lessens the amount of energy put towards drug safety and curbing the use of these drugs. It also alienates the multitudes that become permanently disabled, in one way or another, from these horrible medications. They have no legitimate label, or recognition. In other words it goes on….forever.

I don’t know the exact count of these disenfranchised and damaged people wandering about like battle weary survivors of an apocalypse, and I probably never will. All I know is that they are there, and there many more than I had even begun to imagine when I started this endeavor.

Do you know of a loved one, a friend, a co-worker, or someone else who suffers from a diagnosis of mysterious origin, such as peripheral neuropathy with an unidentified cause? If so ask them to do some detective work to find out if they have had FQ usage in their past, and not necessarily their immediate past. Tell them that FQ’s are often given during surgery, often without the patient’s knowledge.

If you are faced with potential antibiotic use, for yourself or a loved one, please become informed as to the choices that you have available. If antibiotic use is necessary, there are generally safer alternatives than the Fluoroquinolones. Discuss all concerns with your doctor about treatment to help you choose the safest method.

Monetization Policy

#ADE's #Delayed Adverse Reactions #Dr. Bennett #Dr. Golomb #Dr. Noble #FDA

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fqtoxicity · 6 years ago

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New Post has been published on My Quin Story

New Post has been published on http://www.myquinstory.info/hydrogen-sulfide-in-chronic-floxing/

Hydrogen Sulfide in Chronic Floxing

Could hydrogen sulfide (H2S) be driving some of your chronic floxing symptoms? Evidently it is in a subset of individuals who are chronically floxed.

Table of Contents

Caveat

The Gut

Symbiotic Relationship

Enter Hydrogen Sulfide

Dave, Aren’t We Talking About SIBO

How to Get Tested

How is This Affecting Some Chronic Floxies?

Genetics

Probiotics Good or Bad?

How are People Treating This?

Diet

Probiotics

Enzymes and Acids

Natural Herbal Antimicrobials

Prescription Antibiotics, Seriously?

Going Down the Rabbit Hole or Can We Recover?

Increasing Gut Motility or What Came First, the Chicken or the Egg?

Prokinetics

Case Descriptions

Conclusion

Caveat

Chronic floxing is ridiculously heterogenous. Outside the single incident of a person taking the Fluoroquinolones (FQ’s) themselves, there is no single mechanism, and there is no single trajectory when it comes to floxing. The drug can wreak its damage in multiple ways and cause an untold number of problems.

I do consider one of my obligations to report possible connections that are literally stumbled upon as we navigate the dark corridors of FQAD. Whether these connections are strong or weak, these bits of data give us more information that could help some people deal more positively with the symptoms they experience. Obviously, these connections will only apply to a sub-set of individuals and not a majority, but they can be significant for some.

I report this data for information only to spawn further investigation and maybe the impetus for discussions with your trusted medical provider. Reading this article assumes that you agree with the obligatory disclaimer.

Hydrogen sulfide has emerged as an issue in some chronically floxed individuals.

The Gut

It seems that chronically floxed folks generally experience some degree of gut related symptoms that run the gamut from mild to severe. For example, alternating constipation, diarrhea, bloating and functional dyspepsia (where folks experience upper GI discomfort soon after meals), are some of the more common complaints. Also, many report mild gastrointestinal discomfort but not any significant pain or dysfunction.

The bio diversity of gut bacteria is now considered much more important than it was years ago. As we know the FQ’s are atomic bombs to the human body and damage through several different avenues. Like the atomic bomb dropped on Hiroshima, the FQ’s the damage by outright destroying the gut microbiome through depletion in the short term, and epigenetically altering the bacterial composition in the long term, which allows the symbiotic state to cease functioning effectively.

I know that all antibiotics (actually many pharmaceuticals and non-pharmaceuticals alike) can damage the microbiome. What makes the FQ’s so insidious is that they damage the microbiome and also impact other gut functionality as well, such as affecting motility via mitochondrial dysfunction. So, the FQ’s can deliver a one, two punch to the digestive tract.

The combination of strains of bacteria in the human gut are as unique as each person’s fingerprint and it appears that disruption in that population can have severe consequences in some individuals, even in small amounts. In some, these minor disruptions seem to fly under the radar scope therefore not creating any suspicions.

Symbiotic Relationship

From my own personal research I have learned that there are about 1000 different strains of microflora that could end up populating your gut, give or take a few hundred. Most individuals are inoculated with around 150 core strains (not including subspecies) of this larger. The exact amounts differ slightly depending on which expert you follow but you get the idea. This inoculation of bacteria primarily occurs during the birthing process.

This bacterial cocktail become unique to you over time and some experts believe these colonies of ‘probiotics’ become about as unique as your fingerprints. It is theorized that this adaptation happens when DNA in the bacteria mutate to link to the environment in your colon. More simply, they adapt to you in order to survive by providing you with nutrients that in-turn insure their survival in a true symbiotic relationship.

Viewing our gut microbiome this way, one can understand how devastating antibiotic use, especially FQ usage, can be to the overall health of an individual. Also using this perspective, one can see that, even though some bacteria are considered good ‘probiotics’, they may not be ‘good’ for you as they lack the history of being ‘seeded’ by mother and then subsequently mutating to your environment.

Enter Hydrogen Sulfide

Human gut microbes perform many metabolic functions that our own bodies cannot carry out. They assist with the breakdown of food and their associated by-products contribute to our health. Most gut microbes are present within the large bowel but in many individuals, due to motility problems or other factors, these colonies of bacteria can become overgrown and move up the digestive tract. In this scenario, even good bacteria can behave bad. The overgrowth of bacteria in the gut inevitably leads to an overproduction of by-products which can become toxic in certain doses. One of these by-products is Hydrogen Sulfide or H2S.

H2S, like many things, is produced by normal cells and is involved in regulation of blood pressure, neuro-transmission, muscle relaxation and levels of inflammation. Internally produced H2S plays a role in regulating blood pressure, body temperature, vascular smooth muscle, cardiac function, blood flow to the brain, and is an important modulator of the hypothalamus-pituitary-adrenal axis.

In the ‘normal’ person H2S is cleared quite efficiently, being broken down by enzymatic activity and released through the lungs.

However, when the mitochondria are poorly functioning, as they are in many chronically floxed folks, H2S can become quite toxic.

When in excess (what constitutes excess H2S can be quite arbitrary depending on the individual) H2S acts as a mitochondrial poison inhibiting many enzymes involved in oxidative phosphorylation, affecting the levels of mitochondria of energy by reduction of ATP (source).

Dr. Sarah Myhill, MD says that besides hitting the mitochondria (mito’s) very hard, excess H2S also interferes with oxygen transport in red blood cells, inhibits immune cells such as CD8, T cells, and Natural Killer cells, impacts the hypothalamic-pituitary-adrenal axis, and possible affects levels of glutathione.

As I have pointed out before, the FQ’s target and damage mitochondria via Topoisomerase disruption. Mitochondria themselves resemble bacteria in many ways and some scientists believe these organelles descended from ancient eukaryotic sulfur-using microbes. Many chronic floxies that I know are poster children for mitochondrial dysfunction/disease, so it is no surprise that H2S could be very toxic to those with poorly functioning mito’s.

Dave, Aren’t We Talking About SIBO?

That is a good question. Yes, but we are looking at it in a more specific scope. According to studies, SIBO is a very heterogeneous syndrome. In other words, it can have very broad symptoms and implications (source). In our case SIBO, caused by floxing and compounded on a mitochondrial dysfunction backdrop, is pretty complex. A while back I wrote and article about SIBO, you can find it here. There is a lot of good information to be found on SIBO, but the opinions on causation and treatment can be very complex. Anyway, more than likely the reason for the excessive H2S production is SIBO caused by dysmotility, microbiome disruption, or both.

A healthy body has several different ways of preventing SIBO. Chris Kresser M.S. L.Ac, functional medicine expert, states that these include gastric acid secretion (maintaining an acidic environment), waves of bowel wall muscular activity, immunoglobulins in the intestinal fluid, and a valve that normally allows the flow of contents into the large bowel but prevents them from refluxing back into the small bowel. (This is called the ileocecal valve because it’s located between the ileum, or terminal end of the small intestine, and the cecum, a pouch forming the first part of the large bowel.)

When functioning normally the small bowel plays an important role in digesting food and absorbing nutrients. It is also an important part of the immune system, containing an impressive network of lymphoid cells (cells of the immune system that help fight infections and regulate the immune system).

As I mentioned earlier, the normal (beneficial) bacteria that are an essential part of the healthy small bowel also perform important functions. These beneficial microorganisms help protect against bad (i.e. pathogenic) bacteria and yeast that are ingested. They help the body absorb nutrients, and also produce several nutrients (such as short chain fatty acids) (it also appears that the fatty acid metabolism is somehow targeted by FQ’s I will write an article on this in the future) and vitamins like folate and vitamin K. These bacteria help maintain the normal muscular activity of the small bowel, which creates waves that move the intestinal contents, like food, through the gut.

There are many ways that this complex system gets disrupted or damaged by FQ’s. To be blunt, sometimes this is permanent damage that will require periodic or even ongoing treatment. I will briefly touch on this towards the end of the article.

How to Get Tested for SIBO (Or Should I?)

Breath Testing: Breath testing is a non-invasive test that is used fairly frequently as a way to diagnose or rule out SIBO. The test works by testing for the presence of hydrogen or methane in the breath at specific intervals after a person drinks a liquid containing a sugar solution, such as glucose or lactulose. Many gastroenterologists can do this testing in their offices.

Despite its wide use, concerns about the validity of breath tests for SIBO have been raised. One of the biggest concerns is the fact that the test yields too many false positive results, particularly for people who have a rapid transit time of food through the digestive system, or false negative results, most likely in people who have gastroparesis (slow emptying of the stomach). In addition, there is no consensus on the best protocols for performing the test, nor is there a consensus on exactly what amounts of gas present in the breath constitutes a positive test result. Nevertheless, the simplicity and safety of the test are the primary reasons why this is the most popular way to test for SIBO.

I have heard of folks who cannot afford to get the lactulose testing. There are reportedly home test kits for this but I do not have any feedback on the bad or good regarding these.

Jejunal aspiration: More invasive, but considered more accurate for diagnosing SIBO than the breath test, is a test called “jejunal aspiration.” This procedure takes place during an upper endoscopy procedure and requires that a sample of fluid be taken from the middle section of your small intestine. The sample is then cultured and evaluated for the presence of bacteria.Jejunal aspiration is not generally used. Its downsides are that it is costly, time-consuming, and while generally considered safe, still carries more risks than a breath test.

Medication Trial: A fairly common way, and the most used, was for a medical practitioner (naturopath, functional, or traditional) to assess the presence of SIBO via consultation and symptom review and experiment with a therapeutic trial of an agreed upon treatment regimen. Obviously, some sort of symptom relief would therefore suggest that SIBO was present.

I have interacted with several floxies over the years who have not had any outward signs of digestive issues but had to have an antibiotic or other antimicrobial for other health reasons and reported a lessening in some of their non-digestive floxing symptoms. Although antibiotics (natural and synthetic) can have other effects in the body such as anti-inflammatory mechanisms, one could argue that H2S was driving symptoms in a stealth manner without them knowing about it.

Testing is controversial. I, personally, had a lactulose breath test several years ago and failed it miserably. Some have had symptoms but passed the lactulose test and still responded well to some form of treatment.

How is This Affecting Some Chronic Floxies?

I collect real world data on floxing from sufferers. I have done this for many years. Over time patterns seemingly appear amongst groups of individuals. In one such pattern, some chronic floxies are finding that their unpleasant symptoms are being exacerbated by H2S. Some of the more pronounce symptoms commonly reported are:

More commonly:

Chronic Fatigue (And it can get severe)

Tired but wired feeling (seen frequently with chronic fatigue)

Post exertional malaise and weakness

Cognitive difficulties (brain fog), interestingly in particular some people have reported aphasia (dysphasia) like symptoms

Breathing difficulties (air hunger with normal SpO2 and cardiac function)

Achalasia and other digestive tract motility issues

Abdominal, arm, and leg weakness

A Little Less

Myalgia

Palpitations

Neuropathy exacerbation

“Tweaked” Nervous system ( Increase in tinnitus, insomnia, etc…)

Weight loss and symptoms related to vitamin deficiencies (malabsorption)

General mention but not common to all: Photophobia, Dizziness, specific pain complexes (such as chest, arms, shoulders, or hips). This is not an all-inclusive symptom list as symptoms can vary.

Genetics

Interestingly, and I wouldn’t completely hang my hat on this, but I am also noticing a loose correlation between severity of symptoms in floxies who have certain single nucleotide polymorphisms (SNPs) when exposed to and overabundance of H2S. From 23andMe data those with more homozygous SNP’s in the ATP, COX, and NDUF sections seem to have more severe fatigue symptoms than others. H2S at toxic levels inhibits cytochrome c oxidase, a key component of the mitochondria respiratory complex IV (source). Also, CBS mutations may also play a role in some. Again, this is a loose correlation and more data needs to be extrapolated to hang our hats on specific genes, but there is enough of an occurrence to warrant a mention and point to an investigative follow up if you suspect H2S as a culprit.

So, in retrospect, it appears that in some chronically floxed folks the gut is producing too much H2S and driving negative symptoms. In most floxies who were affected by this, their mitochondria are believed to be moderately to severely dysfunctional. In some of the floxies the corresponding gut symptoms were very noticeable and on others hardly at all. What is remarkable here is that there is no ‘one size fits all’ symptom pattern for excessive H2S production and buildup. There are many unknowns about H2S, including the amount of gut H2S the normal person can tolerate. Some folks had severe symptoms while other had mild symptoms, but all were helped to some degree or another by bringing the H2S under control.

Probiotics, Good or Bad?

That’s a good question. Over the years I have talked to many floxies that cannot take probiotics for one reason or another. It appears that in some floxies probiotics drive an increase in H2S production and make their symptoms worse or it may drive some of their negative symptoms even without them knowing it. This is because high levels of H2S are caused by an intestinal overgrowth (SIBO) of gram positive D/L lactate-producing bacteria. So, for those plagued by H2S over abundance, strains of Lactobacillus bacteria, which are frequently found in those cheap and group packaged probiotic preparations (even expensive ones), could exacerbate lactic acid production and thus an over production of H2S as well.

It is important to note that not all Lactobacillus strains produce the undesirable D-Lactate. For example, the Lactobacillus GG has been researched thoroughly and does not produce D-Lactate. Unfortunately, many strains of the Lactobacillus family have not been thoroughly researched to determine their pros or cons when it comes to H2S production. That is why I avoid those broad-spectrum “acidophilus” probiotics, especially the ones that are packaged with prebiotics.

How are People Treating This?

This is another area of wide opinion. What we are basically looking at is primarily treating the SIBO. However as we talked about above, SIBO is neither easy to quantify nor treat. Treatments for SIBO run the gamut from diet, targeted probiotics, acids, enzymes, and antibiotics. The controversial part is whether some people, or most, have crossed the point of no return so to speak and require continual or at the very least periodic treatment. It appears that in most chronic floxing cases where the person is affected by H2S, some form of ongoing treatment or adaptation may be necessary.

There are experts that believe once the microbiome is damaged or obliterated beyond a certain point it cannot be repaired. So, at what point do you cross the Rubicon to reach point of no return? This, obviously, is an individual threshold that would largely depend on what type of damage/dysfunction is driving the dysmotility in the digestive tract.

In my particular case I am beyond the point of no return. I have come to terms with the realization and work to maintain my gut continuously. In my case I have neurological/mitochondrial and functional issues post floxing that cause motility problems and in-turn predispose me to SIBO. Since I cannot correct the underlying pathogenic process that drives the dysmotility, I just do my best to maintain it.

Let’s briefly look at some of ways some floxies are treating this.

Diet

One thing that may be successful in mild cases is changing to a FODMAP diet. FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols, which are short chain carbohydrates and sugar alcohols that are poorly absorbed by the body, resulting in abdominal pain and bloating.

These carbs and sugars feed the bacteria in the small intestine that produce H2S. Some folks have had a great reduction in symptoms by following the FODMAP diet. Things that should be avoided on a low-FODMAP diet are some vegetables and fruits, beans, lentils, wheat, dairy products with lactose, high fructose corn syrup, and artificial sweeteners.

Some folks try the FODMAP Diet for a while to see what symptoms abate. Some have found that their digestive symptoms get better and their energy improves. Others have found that digestive symptoms improve but fatigue does not. The latter would probably indicate a more aggressive treatment is needed. It is important to note that a FODMAP diet will not cure dysmotility but instead favors bacteria in the gut that do not produce H2S as a byproduct.

You get more information about the FODMAP diet here.

The FODMAP diet along with probiotics seemed to help those suffering from milder symptoms, while some others felt relief from a Stoneage diet. Personally, for me, I have found the FODMAP diet easier to follow post floxing than the Stoneage diet.

Another diet that has been reported to have limited success is an intermittent fasting diet. I have no experience with this diet, but you can find more information here.

Probiotics

Some of the individuals that I have interacted with that have had success improving their symptoms using probiotics usually go strain-specific and avoid common probiotic groupings. There are some exceptions to this, that I will point out. The idea behind treating H2S and SIBO with probiotics is to populate the small intestine with strains that do not produce lactic acid and subsequently H2S. This easier said than done. Sometimes finding strain specific or single strain probiotics is difficult and expensive. Often, probiotics are packaged with prebiotics which can be a big no-no for some people (I explain this shortly, below). Plus there is a plethora or (mis)information floating around out there pro and con about various probiotics. Even though there is a lot of hype, there does seem to be some evidence that suggests probiotics can be beneficial for some individuals in changing their microbiome.

The bad news is that, it appears that those who have seem to benefit from probiotics seem to have to use them almost continuously. This is probably due to an underlying dysmotility issue which helps drive the SIBO and in-turn the H2S. There is a chance, in some, that the gut may get properly re-seeded so to speak and continual probiotic inoculation may not be necessary. Anyway, some strains that have been reported to be helpful are:

Lactobacillus GG

Lactobacillus Reuteri

Bifidobacteria infantis 35624

Lactobacillus plantarum 299V – Some folks have has success with the nonpedigree strain of L. plantarum

Bifidus Lactis

Bacillus Indicus (HU36TM)

Prescript Assist – This is one of the exceptions that I mentioned earlier. Prescript-Assist is a probiotic formula containing 29 different bacterial species. Unlike most probiotics, these bacterial species aren’t lactic acid bacteria. Instead, they represent soil-based bacteria. There is some controversy surround the use of soil-based probiotics. This article is not designed to explore that controversy, so you would have to do your own research or consult a professional.

Saccharomyces boulardii – Not a probiotic in the traditional sense but instead a beneficial yeast. It fights off pathogenic strains of bacteria and some research shows it reduces inflammation. It does not colonize the gut, so it needs to be taken continuously and with probiotics. There is some controversy surround the use of probiotic yeasts, but many have safely taken S. boulardii without any problems. Again, this article is not designed to explore the controversy so do your own research or consult a professional. Again, I do know several folks who have used this very successfully, especially with those suffering from IBS-D associated with their SIBO and H2S.

Kefir – This one is a conundrum. Interestingly kefir does not form D-Lactate according to some experts. One would have to experiment with the various brands, types, etc…

Unfortunately, yogurt has a bad track record of producing high concentrations of D-Lactate.

Important note about prebiotics: Many, not all, who I reacted with when writing this article had to avoid using probiotic brands that contained prebiotics such as FOS, MOS, or other integrated prebiotics. Prebiotics, although good in certain circumstances, can feed the bad bacteria that are causing the H2S problems. Evidently using too much prebiotic can hamper find that ‘sweet spot’ necessary to switch microbiome makeup. It is hard to find many probiotics, or even S. boulardii for that matter, that are free of prebiotics. Because of this, I have integrated links to products that I am aware of. There may be more products out there sans the prebiotics you’ll just have to look hard for them. If you find some, let me know and I will use the data to share with others.

Enzymes and Acids

Over the years I have received several reports of either suspected or documented pancreatic insufficiency. In addition, pancreatic insufficiency is found to be increased as we age even in people without any known gastrointestinal disease or diabetes. Whether this is the case or not with a larger pool of floxies, some folks have been helped with the addition of digestive enzymes. Digestive enzymes are essential for quick and efficient digestion of foods, so they cannot be fermented downstream and contribute to the H2S situation. There is a plethora of digestive enzymes on the market. Personally, I have had pancreatic issues post floxing and I take digestive enzymes, one of my personal favorites can be found here or here.

Stomach acid is essential for sterilizing the stomach and upper gut. This low stomach acid or hypochlorhydria can be caused by numerous factors, including antacids such as H2 Blockers, PPI’s and other pharmaceuticals and aging. Since hydrochloric acid helps your body to break down, digest, and absorb nutrients, low acid can contribute to bacterial overgrowth.

I was always in a catch 22 situation post floxing. For me floxing did something that started me having bouts of gastritis. For a while I saw an alternative practitioner who told me my problem was due to low stomach acid and tried me on apple cider vinegar, betaine HCL, and other acid increasing techniques. These treatments were abject failures causing me great distress. Later, I saw a gastroenterologist who, through testing, showed I was producing too much acid mainly due to gastroparesis which was caused by the mitochondrial dysfunction. For me, my stomach was holding on to food too long thus overproducing acid. I was forced to take something to lower the acid.

Nonetheless, some folks have been helped by taking supplements to help raise the level of stomach acid. It is important to work with a professional on this one.

Natural Herbal Antimicrobials

When the problem is more severe, stubborn, or been present for a long time turning to a natural antimicrobial might be the next step. It is my opinion that those who work with a knowledgeable functional health provider have a better overall chance of success when choose the right combo of natural antimicrobials. There are a few studies that have shown that herbs can work just as effectively as pharmaceuticals for some(source).

Another observation is that, for some, success depends on the synergistic effect herbs have when used in combination with other herbs. This is because herbal antibiotics which are made from whole plants contain numerous different beneficial compounds instead of one isolated compound in regular antibiotics. Also, herbal treatments usually need to be taken longer such as 4-5 weeks.

Some straight herbal treatments that have been used:

Allimed (Allimax)

Oregano Oil

Berberine

Neem

Juniper

Below are combination formulas that have been proven effective for some. The dosage used was 2 caps twice a day for each product in one of the combination formulas.

Dysbiocide + FC Cidal from Biotics Research or

Candibactin AR + Candibactin BR

There are other natural antimicrobials that need to be mentioned. I am sure that I will miss some, these are just ones that people have mentioned to me or that I have tried myself:

MCT’s: Medium chain triglycerides. These are excellent as energy for some with impaired mitochondrial functioning. The FQ’s are suspected to interfere and even damage genes involved with fatty acid oxidation. Anyway, MCT’s have antimicrobial properties (source).

Olive Leaf Extract, (source).

Prescription Antibiotics, Seriously?

Despite our fear of ever using antibiotics again, many folks must for one reason or another. Ironically, several folks have mentioned to me that they feel a lot better when they took antibiotics for various reasons. This phenomenon makes perfect sense if some of your post floxing symptoms are being exacerbated by an overgrowth of bacteria in your small intestine, since antibiotics are killing off the bacteria.

Let me throw in the caveat here that antibiotics require a prescription in the U.S. and many countries, so please consult your trusted medical professional for all decisions related to taking antibiotics. Also, I am not advocating the use of antibiotics. I do know several floxies that have purchased antibiotics and other pharmaceuticals without a prescription from here. This is supplied as information only. In addition, I believe tha this is a highly individual decision best left between you and your doctor.

I wish that I could say that individuals reported that only one course of antibiotics would cure them of this situation but alas that is not the case. Antibiotics are a double-edged sword. For many they are the cause of the problem in the first place and although they can help some, antibiotics alone rarely cure SIBO in the long term.

It is possible that initial FQ antibiotic use in the first place, created a no-win scenario.

There are two antibiotics which are mainly used for treating SIBO: Rifaximin (Xifaxan) and Neomycin. Note, that Neomycin is usually used with methane dominate bacterial species. The reason these two are commonly used is because they are primarily non-systemic, meaning they mostly don’t get absorbed into the bloodstream and instead stay in the intestines, allowing them to kill bacteria residing in the intestines and not elsewhere.

Most floxies can tolerate Xifaxan according to reports, but I have had several reports of floxies not tolerating Neomycin.

Less frequently used is the systemic antibiotic Metronidazole (Flagyl). Flagyl is sometimes chosen over Xifaxan because of the cost. Flagyl has a so/so reputation for toleration at around 50%. It can cause some neurological symptoms via thiamine deficiency. I wrote an article about Antibiotic Use After FQ’s here.

Generally, doctors will prescribe these antibiotics for 10 to 14 day courses.

At siboinfo.com, Dr. Siebecker (a leading expert on SIBO) gives these as some examples of SIBO dosage options. Keep in mind that there aren’t any established protocols for SIBO antibiotic dosages, so your doctor may prescribe something different1:

Rifaximin 1600mg daily x 10 days

Rifaximin 1200mg daily x 14 days

Rifaximin 1600mg daily + Neomycin 1000mg daily x 10 days

Rifaximin 1600mg daily + Metronidazole 750mg daily x 10 days

Oftentimes, a single round with one of these antibiotics doesn’t cure SIBO, especially in severe cases. When the first course doesn’t work, doctors will often prescribe another antibiotic or add another antibiotic to the treatment for another course.

I have had mixed reports of success using antibiotics for SIBO (H2S Treatment) from floxies. Reports range from a miracle cure to no help at all and several in between, where the antibiotic will help with some symptoms and not others. Some have had to take a non-systemic antibiotic like rifaximin, followed by a systemic antibiotic like a short dose of vancomycin. I think the reason for this has to due with gut permeability and the fact that some of the bacteria actually get deeper into the lining of the tissues surrounding the digestive tract.

Going Down the Rabbit Hole or Can We Recover?

Antibiotics are often used by both alternative and traditional doctors to treat SIBO. However, studies show that despite treatment with antibiotics, recurrence develops in almost half of all patients within one year. One study comparing treatment with rifaximin (the most commonly used antibiotic for SIBO) and botanical antimicrobials showed slightly better outcomes with the botanical protocol, but still with successful treatment in close to only half of all patients after one course of treatment.

Ironically, taking FQ’s in the first place was the trigger that started this mess for a lot of people.

Microbiology expert Jeroen Raes recently told listeners his Brussels TEDx talk on the subject of SIBO that “If you get a normal dose of broad-spectrum antibiotics, some of you will recover, in terms of gut flora, after a few weeks. For some of you, it will take months. For some of you it can take over a year for your gut flora to become ‘normal’ or to return to what it was again. And for some people, they never recover. They have permanently altered their gut flora.”

Keeping this in mind, I have contact with a lot of people that would suggest that the FQ’s do create a permanent case of dysbiosis in some. Either by permanently altered their gut flora or causing dysmotility via mitochondrial damage, neurological damage, dysautonomia, or a combination of several factors.

Furthermore, a lot of alternative medicine treatments that focus on addressing the underlying cause, or predisposing factor don’t work on floxed folks because the FQ’s caused a permanent situation. I have found that many, not all, alternative practitioners are no better than their classical counterparts when it comes to understanding what the FQ’s can do to the human body.

Increasing Gut Motility or What Came First, the Chicken or the Egg?

There are many identified associations between SIBO and disease processes. It would be safe to say that abnormalities in gut motility are probably the predominant driving force in H2S coupled with other factors on top, such as low acid, enzymatic insufficiency, and so on.

Did the FQ’s cause mitochondrial dysfunction or nerve damage which led to SIBO(H2S) over production? Or, did the disruption of the microbiome cause the slow down then becoming reinforced via other factors? Trying to figure out what comes first is like arguing the chicken or the egg scenario.

Either way, it seems safe to say that a slowdown is taking place. Most individuals, who do not recover after a standard course of antibiotics, or botanical antimicrobial, or enzymes, or probiotics, may benefit from the addition of a prokinetic agent. Prokinetics increase the muscular contractions of the small bowel. The migrating motor complex (MMC) is a cyclic and recurring pattern of motility that occurs in the stomach and small intestine.

Abnormal motility of the phase III “housekeeper” waves of the migrating motor complex in the small intestine may contribute to the development of SIBO in individuals with IBS (source).

Many practitioners recommended to take prokinetic agents immediately before going to sleep, since, while we sleep, our body is going through several detoxifying and repairing processes and this is also the time period where we experience the most MMC waves.

To be honest I do not have a lot of data on prokinetic agent use in floxies. Just a sparse handful of reports here and there.

Prokinetics

Prokinetics fall into two categories: Pharmaceutical and Natural

Pharmaceutical prokinetics include, Domperidone, Metoclopramide, Levosulpiride, Erythromycin, Tegaserod, Mosapride Citrate, Renzapride, and Prucalopride.

Pharmaceutical prokinetics can and do have many drawbacks. First, and foremost is that most of them affect other parts of the body apart from the gut, acting act on chemicals that are important for regulating memory, mood, and behavior. It is very imperative that you understand all the risks before using these drugs. Of the drugs in this category domperidone has one of the lowest side effect profiles. Domperidone is widely available in every country in the world accept the U.S. which has more limited availability. In the United States domperidone is not yet FDA approved but it is currently available at select compounding pharmacies with a doctor’s prescription.

Natural prokinetics include, Ginger, Iberogast, Motilpro, Triphala, Rikkunshito, and Si Mo Tang.

It is important to realize that most natural and herbal medications are not regulated for purity and quality therefore it is imperative to buy quality products from a trusted proven source. This is only after you have equipped yourself with all the available information.

Also, while herbal formulas are generally safe, if you take prescribed medications, know that herbal supplements (especially in large doses) sometimes interact with your prescriptions causing other side effects. So, it would be wise to work under a doctor’s guidance.

To research these prokinetic substances in more depth you can follow this link here.

Cases Descriptions

Case #1

Bill, 58-year-old male, floxed for 12 years. Bill suffers from the standard post FQ’s chronic floxing; some neuropathy, chronic fatigue, some digestive issues. His digestive issues began after floxing. And ranged from mild to moderate, mostly IBS-C with occasionally IBC-D, and he was using the Fodmap diet to control most of his digestive symptoms. One day at the gastroenterologist’s office his doctor mentioned the lactulose test which Bill consented to take. Bill failed the test miserably, showing an excess of H2S producing organisms. Ironically, the doctor’s office wanted to start him on Cipro right away but obviously Bill said, “Hell no!” Bill also refused Flagyl (Metronidazole) and instead he opted for a course of Xifaxan (Rifaximin) which luckily the insurance paid for after the doctor’s office jumped through some hoops documenting a FQ allergy.

Bill said the results of the Xifaxan were pretty astounding. First thing that happened was that he got about a 20% increase in energy within a week of starting the xifaxan, which he said was a great improvement. He also reported an improvement if brain fog and lessening of neuropathy symptoms and a moderate improvement in digestive issues. Currently, he still watches what he eats and still follows the Fodmap Diet. He takes 5-htp at bed to help with motility. Despite that, he still has to repeat the Xifaxan every six months or so, which my insurance covers with help from my Gastro doc.

Case #2

Gail, a 55-year-old woman floxed for 10 years. Post floxing, she suffered from severe weakness and fatigue which included PEM and routine ‘crashing’ that would leave her bedridden or house bound. She had a history of gastrointestinal problems post floxing which included some mild diarrhea but severe constipation, non-specific abdominal pain, bloating, and gas. Certain carbs or sugars exacerbated her problems. She did have to have a cholecystectomy (gall bladder removal) post floxing. She was forced to have to use oral dicyclomine for an infection and noticed an improvement in her floxing symptoms, which initially puzzled her. After discussing with her doctor her digestive symptoms, she received a lactulose test and results show H2S production. She agreed to try a course of Flagyl (Metronidazole).

Gail initially got some stomach cramping and diarrhea from the Flagyl but decided to finish all the medication. Amazingly, she reported a 50% reduction in fatigue and weakness. Since the Flagyl she is eating a lower carb diet and uses Iberogast to help with motility. She knows that she will probably have to use the Flagyl again in the future but is apprehensive about ever having to use antibiotics again.

Case #3

Lydia, a 38-year-old female was floxed for 6 years, She described herself as moderately floxed and suffered from neuropathy, migraine headaches, fatigue, and digestive issues that included mild to moderate constipation and abdominal pain, both of which were intermittent, and self-limiting. She sought help for her problems from a naturopath who determined from her symptoms that she had SIBO.

Lydia was prescribed a combination of oregano oil and Berberine. She also used 5-htp and Ginger for motility. Her treatment eased her digestive issues along with some of her fatigue and brain fog.

I want to thank the three floxies who allowed me to share their brief experiences. I do have more and in the future I may add others experiences in correcting H2S as time permits.

Conclusion

It is very important to note, as mentioned earlier, that I have interacted with floxies who have not had any outward signs of digestive issues but had to have an antibiotic for other health reasons and reported a lessening in their floxing symptoms. Although antibiotics can have other effects in the body such as anti-inflammatory mechanisms, one could argue that H2S was driving symptoms in a stealth manner without them knowing about it.

H2S can be quite detrimental to some individuals with mitochondrial disease/dysfunction brought about by the FQ’s. Although this article covers a lot of information, I have barely touched the surface and did not cover areas such as attempting to heal the gut and the controversy surrounding L-Glutamine and floxies. It is provided to be an impetus for further investigation or to spur conversations with your trusted medical provider.

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#General Medical #Genetics #H2S #Healing #Hydrogen Sulfide #Medications #mitochondrial #Research #Supplements

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