Please note Frequently Asked Questions (FAQ) as opposed to Facts. I get asked a lot of questions regarding Fluoroquinolone (FQ) Toxicity. The following is a compilation of some of the most prevalent questions I am asked and what would be my answer in a nutshell. My decisions are my opinion based on my experience, interaction with researchers, and anecdotal information from floxies. Again, it is my opinion and subject to change. If you are very new to FQ toxicity and in the throes of an adverse event I advise caution. Please read my disclaimer for information used on this website. I will be adding to this page frequently. Updated: 09/08/18.
There are individuals on the internet selling books that are nothing more than a compilation of community acquired knowledge that is publicly available in the file sections of some of the bigger Facebook groups. However, much of this information changes routinely. There are no ‘cures’ or ‘solutions’, so books labeled as such should be looked upon as highly suspect, especially if you do not have the money to afford the purchase. I do not want to see anyone victimized. Chances of your learning anything groundbreaking is pretty slim.
My best advice is to read through forums and groups.
There are good books that describe the travesty of FQ Toxicity, in terms of it being a international crisis, such as written by the late, well respected, Dr. Jay Cohen.
If you are new to this plight, please avoid reading the “Flox Report”, which is available in my files section (no I am not trying to subliminally get you to read it!). Although it does a good job of describing symptomatology and some mechanisms, other areas such as timelines are outdated and can cause unnecessary fear and worry for those not experienced.
Also, it is very important to note that what works for one person, can be a disaster for someone else. This has been exampled time and time again.
YES, but please read so that you do not misunderstand me. Despite what you may hear, and separate from the limited university research, in my opinion there are no private non-profits that are currently working on the FQ problem from a scientific research standpoint that will produce tangible, real world results. Oh yes, there are a few smaller non-profits (at least two that I know of) that are attempting to solve the problem from a research standpoint but unfortunately, in my opinion, they are too pigeonholed or myopic in their focus.
Seriously, I am not trying to be negative, but pragmatic and practical. Unfortunately they are dominated by strong self-interests that do not work well with other organizations or people, are not working with researchers at academic institutions, and are focusing too narrow on their goals.
The FQ molecule is complex in its ability to damage, especially the DNA. For us as a community, even proving the fact that FQ’s cause DNA damage isn’t good enough. It is essential to be able to identify ‘what’ metabolic systems are breaking down in each individual person, as the trajectory each floxed person takes is different after the initial insult. Thus is the inherent wickedness in DNA damage; different combinations of metabolic systems breakdown in each person. The only way to cast a wide enough net in this heterogeneous mix and elucidate treatments is through metabolomics.
Because of this I support the Open Medicine Foundation. Like I have said all along, the contributions made by the ME/CFS community will one day benefit us all. I have no doubt that in the future the first testing protocol using metabolomics to identify “what” is breaking in each individual will come to the flox community from the ME/CFS community based on their ability to work together, raise money, and identify and fund researchers. There are many, many closet floxies in the ME/CFS community and many don’t even know it. The Open Medicine Foundation is researching as we speak how to elucidate treatments for ME/CFS through metabolomics and their research will directly benefit us.
No. Your genetics are fixed and unchanging so 23andme or similar sampling cannot elucidate any damage to your genome. 23andme does not sample the entire genome only around 600,000 or so SNP’s which cover what they consider the most active parts of the genome. In other words, the sections that they believe gives them the biggest bang for their buck.
Having said that, 23andme testing is helpful for comparing current symptoms with what is shown in your data. It can give you insights as to ‘why’ you are responding a certain way. Remember genetics are probabilities not actualities. For instance, it is helpful to know if you are homozygous for MTHFR or other SNP’s such as CYP that can effect how you metabolize drugs, which can effect your healing after being floxed. Remember, jut just because it is listed in the genes does not mean you will respond that way.
There was some erroneous information floating around from a supposed credible source in the floxing community that services such as 23andme could detect DNA damage. Occasionally this rumor will ‘make the rounds’ so to speak.
I have had my genome sequenced by a couple different companies, 23andme included. I have learned some amazing insights about myself, including why I have some of my symptoms today post floxing. Even though I recommend the floxies eventually patronize a service such as 23andme if possible, I have one word of caution, with these genetic services it is easy to get caught going down a ‘rabbit hole’, as there is still so much more unknown about the human genome that is known. None the less, they can bring about some fascinating insights, some of which could help you learn how to help yourself heal.
Again, these services are good for learning more about yourself but they cannot identify nor quantify any damage to the nuclear DNA.
Obviously, if you take another drug from the family of the fluoroquinolones after you have already had an adverse event to a fluoroquinolone, there is a good chance that you could have another adverse event that could be worse than the initial one.
There are some other pharmaceuticals that are close cousins in their chemical makeup and whose side effect profiles are similar that could pose a cross adverse event susceptibility. Those pharmaceuticals are from anti-malarial family.
The claims of being re-floxed from foods and other substances are dubious at best and are generally subjects of internet hearsay caused by people attempting to explain something that they do not understand. Before that statement upsets your apple cart, let me explain.
The amount of biochemical pathways in the body is astronomical. If you doubt me, please follow this link and have a quick peek. http://biochemical-pathways.com/#/map/1
When you have an adverse event to the fluoroquinolones your homeostasis becomes thrown off and many biochemical pathways become unstable or outright damaged. When this happens seemingly innocuous substances can easily unbalance these already disrupted pathways causing a return of symptoms.
These innocuous substances could have been foods that you easily tolerated before, or it could be something more substantial such as another pharmaceutical. What is happening is that these substances are putting pressure on a damaged or strained biochemical pathway causing a return of symptoms.
Often people attribute these flares as eating foods, or drinking water containing an FQ or taking a substance that is causing the FQ to be released from the adipose tissue (fat). Due to the parts per million distribution factors or an understanding of partially decomposed FQ molecules in adipose tissues, I have never seen any hard evidence (research) support these attributions.
Before you get upset and start telling me that you have talked to people who have been refloxed from food just remember one thing. Over the last decade or so, I have talked to literally hundreds of folks. I know one guy who at at KFC, five days a week after he recovered from floxing or another lady who ate farmed salmon at least twice a week, etc…
Do not misunderstand me, these sensitivities are not in your head. Due to the extensive damage that FQ’s can cause, it is entirely possible to become sensitive to other drugs (through inhibition or damage to the CYP system in the liver) or foods (through damage to the lining of the intestine, etc…), even chocolate 🙁 . So, yes, it is entirely possible to have other substances cause a negative reaction or symptom in the body, however these sensitivities are generally very unique to the individual.
Am I saying that there are no FQ residues in our foods? No, not at all. There are all kinds of drug residues in our current chain, unfortunately. Just use common sense and do what you believe to be the best for your body.
I do believe that a person should try to be as wholesome (avoiding over processed animal meat and foods that could have higher FQ tissue concentrations) and eat pure as you can and avoid many of the synthetic substances that are in our diets today. However, too much hearsay and fear about the consumption of food causes undue stress and worry in some individuals, which in itself can become a problem. I have actually seen that far more than actual claims of refloxing from food.
Remember, when very sensitive, the slightest thing can throw us off and it can be quite different for each person.
Please read my other FAQ on “Why do we have cycles?”
No. And that is what makes these drugs so insidious. There is still not enough known about ‘how’ the FQ’s damage the human body to develop a test to determine who will have a bad reaction or adverse event. Oh sure, there are some factors that seem to play into an adverse event such as CYP polymorphisms and many, many ways identified that the FQ’s can damage the body, but so far none has proven universal enough to developing an accurate test.
This is a subject of intense debate. Before I give you the yes and no answer, let’s review one point:
It is not necessary for the drug to remain in the body to wreak long term havoc. Let me repeat, “It is not necessary for the drug to remain in the body to wreak long term havoc.”
Before some of you with preconceived notions get upset, let’s look at a few logical points to back up this assertion. If you have been consuming alcohol and/or smoking, the effects of either drinking or smoking permanently stop 2 to 3 days after you quit using them, right? Of course they don’t. There are many individuals who had to deal with the consequences of smoking or drinking years after stopping.
Now I am not trying to be sarcastic, uncaring or rude. I just want make a point that substances can have a strong, long lasting consequences. Because of this, there can be no expectation your side effects or adverse events will go away when discontinuing the medication.
Let’s look at another point regarding mitochondrial damage. The analogy is the snowball rolling down the hill. In some people, when you damage the mitochondria it is akin to starting a small snowball rolling down from the top of a large hill. Initially the snowball is almost unnoticeable. But as the snowball rolls downhill it gets larger and picks up speed, becoming more damaging as it proceeds. When drug toxicity damages mitochondria the damage is not immediately observed. Many times people believe the have recovered or never had an adverse event in the first place. Since mitochondria turn over slowly in many tissues, time is required for the amount of mitochondrial machinery and the ability to synthesize ATP fall below a pathogenic threshold value.
Because limited space I will not go into all the ways FQs can damage your body, but one more avenue they can damage your body and leave, and that is through epigenetic influence, or the turning ‘On’ or ‘Off’ of genes that control disease processes. In this scenario the FQ’s basically switch ‘On’ a process that becomes a problem ‘down the road’, then they leave.
So no, I personally, do not believe that the intact molecule remains in the body. I believe it does its damage and it leaves.
Additionally, I am not aware of any academic or private documented research that proves the intact molecule remains in the body.
But there’s more…
As you probably know by now, nothing is simple when it comes to the FQ’s. I believe that in some people the FQ molecule breaks apart and various metabolites remain. These metabolites can remain in adipose (fat) tissue. These metabolites have the ability to join with other metabolites from concomitant substances (other drugs such as NSAIDS) to form toxic metabolites. This theory is purely anecdotal but is pretty sound based on input from over a decade of interactions. The FQ molecule is complex and we know of some of the metabolites it can break down into but, again, there is no documented research that elucidates all the metabolites the FQ molecule can break down into. There are many variables so I do not know if that will ever bee accomplished. We do know from research that FQ metabolites can adduct to cellular micro and macro structures causing problems with various structures in the cell such a lysosomes or DNA.
No and Yes! How is that for an answer? A somewhat nasty toxicity profile can be traced back through the quinoline pharmacophore all the way back to the cinchona tree (the natural source of the alkaloid compound that the synthetic quinolones had as an inspiration).
The first medical case report of a short-term quinolone induced syndrome from a non-fluorinated quinolone was reported in the year 1972, before fluorinated fluoroquinolones were invented. The report “Nalidixic acid arthralgia” detailed a case of diffuse severe arthralgia, difficulty focusing, photophobia, and CNS disturbances of delirium and hallucinations. Nalidixic acid (trade name NegGram) was the basis for quinolone and fluoroquinolone antibiotics and technically was called a naphthyridine due to the extra nitrogen atom at position eight on the quinolone nucleus, similar to future fluoroquinolones enoxacin, gemifloxacin, tosufloxacin, and trovafloxacin.
Why is fluorine added? Fluorine greatly increases a molecule’s lipophilicity. Incorporating fluorines increases fat solubility, improving its partitioning into membranes and hence increasing bioavailability. In addition fluorine can also aid hydrophobic interactions between the drug and binding sites on receptors or enzymes.
It could be argued that with the addition of fluorine, the subsequent metabolites produced by the FQ molecule’s metabolization, caused an exponential increase in the ability for toxicity. So, I concede that the fluorine addition probably made a pharmaceutical that had a penchant for toxicity much worse.
Given that, is it just as simple as detoxing fluoride from our bodies? Unfortunately no.
Bottom line, the quinolones had the capability to be toxic before the addition of fluorine but gained the ability to be super toxic after the addition of fluorine.
No. There is no cure. And there is no universally reliable treatment program either. Please read on….
In order for that to change there needs to be in-depth research, and in order for in-depth research to occur we need greater acknowledgement from the FDA and other medical peer groups. This is part of the travesty of the Fluoroquinolone Toxicity. Doctors either dismiss the patient or attribute the patient’s symptoms to something else. Many people come into this community expecting greater acknowledgement from doctors, the FDA, and expecting the ability to find a cure or reliable treatment.
On a positive note, that change is slowly starting to take place and the FDA is slowly starting to recognize the problem.
I have been at this going on 10 years now and have talked to hundreds of FQ victims and have had direct and indirect interactions with many, many more. I have worked with researchers, met with the FDA, and have been foolhardy to pay out of the pocket in the past for expensive health consultants. I have watched groups of people take three paths in an attempt to heal; #1, do nothing, #2 pursue alternative healing methods either through naturopaths, holistic healers, etc…, #3 rely on traditional doctors and traditional medicine. With the slight exception that the group choosing to follow path #3 has seems to have a slightly worse outcome, no path has resulted in greater healing over the other. There are many opinions but keep this fact in mind, if there was a universal cure you would have heard about it and there would not be thousands upon thousands of individuals in various health forums and Facebook groups supporting each other and looking to make a change in our medical system. They would be healing and moving on with their lives.
The reason that there currently is no cure lies in the complexity of the damage caused by FQ toxicity, combined with the fact that individuals are so unique. If someone tells you they have found a ‘cure’ for FQ toxicity, they are trying to sell something. Please be careful as there are those who will seek to victimize those in the FQ community, or anyone who is experiencing chronic health issues, by charging for ongoing frivolous consultations, very expensive supplements, and or medical equipment. I have written a cautionary tale about Internet Health Consultants. Most medical systems, including those practiced by naturopaths and homeopaths, follow paradigms. Experience has shown that floxing falls outside these paradigms because you are looking at damaged caused by a synthetic, DNA altering substance.
Now, this is not to say that people do not heal, some do. Plus, there have been individuals who have found relief from various symptoms by finding solutions tailored to their body but, as with most helpful substances or routines, they are tailored to the individual. What helps heal one person can do tremendous damage to someone else. At this time, time plus very clean living is the best healer for many. If you find something that you believe helps you, great. Just be careful recommending it to someone else.
NO, not really. It really all boils down to how well someone metabolizes the Fluoroquinolone (FQ) molecule. We know that that the FQ’s metabolize improperly in some folks, probably due to genetic CYP phenotypes COMBINED with other systemic variables and concomitant substances. Once they metabolize improperly and depending how much of the dosage breaks down into various metabolizes you are heading for an adverse event. At that point it depends on the type of metabolites that are left over from the original molecule, quantity of the left over metabolites, and probably systemic variables such as cellular PH, trace elements (metals), and a host of factors.
It would appear that CYP polymorphisms do play a role, in part especially in shotgun reactions or adverse events that come on fairly quickly. Cytochromes P450 (CYPs) are the major enzymes involved in drug metabolism, accounting for about 75% of the total metabolism. These pathways are highly polymorphic or heterogeneous (variable) in humans, plus there are so many other drugs and naturally occurring compounds that influence CYP activity as well. Because of this, trying to quantify their involvement in a FQ reaction is astronomical. More research is needed in this area.
Due to the heavy epigenetic quality of the FQ’s, the molecule can metabolize normally and still ‘switch on’ latent genetic predispositions that become pathogenic over time.
Some things that have been ruled out as universally causing floxing are Blood Type, MTHFR, G6PD.*
* These issues could very well play an important role in the severity, type, and length of some symptoms in certain individuals In other words they could affect downstream issues.
NO. Fluoroquinolone toxicity creates a syndrome. It is a novel syndrome that mimics many disease processes, such as MS, Fibromyalgia, Chronic Fatigue Syndrome, etc… Yet, even though it mimics other disease processes, it also sets itself apart in many areas as well as many sufferers experience wider ranging and more intense symptoms than many with organic disease processes.
Due to lack of research and guidance form the FDA many doctors are woefully ignorant to FQ toxicity and the syndrome that it causes. There needs to be intensive academic research that defines the causal mechanisms and damages that manifest after and adverse event.
The FQ’s can and do damage and exert pressure in several different ways. First, they have the ability to cause direct DNA damage. Second, they have the ability to exert tremendous epigenetic pressure thereby ‘switch on or off’ genes and creating a pathogenic process. Third, they set the state for extreme states of oxidative stress that damages cell structures and influences gene selection. Fourth, they can directly damage delicate cellular structures such as lysosomes, cell membranes, and external and internal cellular proteins responsible for cellular communication. These are just some of the more prevalent ways that FQ’s do damage to the human body.
I have seen genetic results from literally dozens of floxed folks, and at this time it would appear that there is no clear genetic predispositions to floxing, including MTHFR. How do we know this? We have seen the genetic tests from severely floxed folks who have had no mutually shared genetic markers. There is some indications that certain CYP polymorphisms may lead to more extensive metabolization in some individuals. This is a strong possibility that needs further research.
There has also been rumors that DNA adductions are the root universal cause of floxing. Again, at this time, this has been proven false by comparisons of mass spec results of known severely floxed folks in addition to consultations with a leading geneticist who cautions that something much more than adduction is at work with this damage process.
Because of this there is no ‘one test’ that conclusively detects FQ damage. It’s possible to indirectly catch FQ damage via testing the reveals malfunctioning metabolic processes. Often times however, the patient will have normal standard testing. Doctors are often befuddled and many end up dismissing patients, diagnosing a psychological disorder, or haphazardly diagnosing a common catch-all such as Fibromyalgia. This further victimizes the sufferer.
First, I am a mixture of both standard and alternative approaches to healing. I tend to try and extrapolate the best out of each of the disparate fields and apply that information to a given problem. Right now, stem cell research is in its infancy. It does seem to hold promise for future systemic treatments and may provide more immediate help for very specific treatments. I, however, have not talked to anyone with genuine FQAD that has been systemically helped by stem cells, yet. I have talked to some folks who have had stem cells injected locally to solve local problems that have had some improvement, but no systemic body-wide ‘reset’ or great improvement has been reported to me. Stem cells are different, depending on their locale in the body so promises of system improvements can be misleading. Instead, a few folks I have corresponded with have come away feeling victimized after spending $25,000 for stem cells treatment that did not produce viable results. I do get it and I am not without compassion because people are scared, in pain, and suffering. People get desperate and look for help and they want it right now. They don’t want to hear anything negative, they just want to get better. Believe me, I, and many, many others have been there. The bad news is that people are often vulnerable during these times and can easily be taken advantage of, and in the area of stem cells it would be easy to be taken advantage of. My advice is to read this article from the International Society for Stem Cell Research entitled Nine Things To Know About Stem Cell Treatments. Please use caution.
More than likely this is a trying time for you and a highly emotional time as well. The amount of information on (Fluoroquinolone) FQ toxicity is overwhelming once you start digging through it, so please use caution.
Keep a few things in mind.
First, the odds are in your favor. Statistically your chances of recovery are pretty good.
Second, when reading through forums and Facebook groups you will encounter a lot of perceived negativity. The reason for this is that people do feel horrible, both physically and emotionally, and they come online and express their feelings. They need a place to outlet their frustration and to find others who are going through the same thing. People need safe places to vent frustration and discuss their physical and emotional problems.
Third, and possibly the most important, it is very, very, very important to note that what works for one person, can be a disaster for someone else. This has been exampled in our community time and time again. Do not go out and buy a boatload of supplements (unless you are under the care of a qualified practitioner) and start mega dosing things that you hear are helping others. If you do intend on trying something, research, research, research. Please.
Fourth, be kind to yourself. I know that you are desperate. Do not starting reading book such as the ‘flox report’, which can scare the ‘Holy Living Crap’ out of some new folks. Although the book has some good technical and symptomatology data listed in it, it is also becoming quite out-dated and thus inaccurate some areas.
Fifth, absolute uncertainty is one of the hardest things created by FQ toxicity. FQ adverse events are tailor made for the individual based on your uniqueness as a human being. Despite what you read or hear, there are no set patterns or time lines. Anyone that tells you that there are, are full of the proverbial ‘horse hockey’. Symptoms can be similar, but in all reality, no two adverse events are exactly alike nor do they have the same time-lines. Too many times I have heard people say “you will be over that by six month”s or “that will go away soon”. It is human nature for us to want to extrapolate someone else’s time-line or symptoms onto ourselves, DO NOT DO THIS! This is terribly unfair to you and can cause undue pain and hardship.
Sixth, there are plenty of places online to find like minded individuals who will help you share your burdens, but again you will encounter people in varying stages of severity.
Seventh, despite research and admissions from the FDA, expect denial from many medical professionals. Its frustrating to say the least.
Eighth, there are no doctors, consultants, or bloggers who can ‘cure’ FQ toxicity. Zero, zilch, nada. If they say they can, they are trying to sell you something. There is no secret cure to be found being safeguarded by a monk on a mountaintop in Tibet. FQ toxicity is a systemic multi-faceted dilemma that is best treated symptomatically and by providing the necessary healthy support for your body to heal. Just because there are no experts on FQ Toxicity does not mean that you should not have serious health symptoms checked out.
Please read My Quin Story’s What Helps page. It is chocked full of information gleaned from the floxie community. The data is free of charge 🙂
Delayed reactions to Fluoroquinolones (FQs) are complex to say the least. However if we look at how drugs damage the mitochondria we can get a good idea how this process works, especially antibiotics.
In the book “Drug Induced Mitochondrial Dysfunction”(2008 Wiley) they discuss antibiotic mitochondrial toxicity. In the book it states that mitochondrial protein synthesis is more closely related to bacterial endosymbiont than cytoplasmic protein synthesis. “As a result, antibiotics that bind to the bacterial ribosome and target bacterial protein synthesis may also bind to the mitochondrial ribosome and inhibit mitochondrial protein synthesis.”
It is important to note that “toxicity caused by inhibition of mitochondrial protein synthesis is not immediately observed. Mitochondria turn over slowly in many tissues. Depending on the degree of inhibition, time is required for the amount of mitochondrial machinery and the ability to synthesize ATP fall below a pathogenic threshold value.” (DIMD; page 465) This delayed reaction can make connecting the adverse symptoms to an environmental exposure (like a medication or chemical) very difficult as it happens slowly, over time, as mitochondrial function falls below a critical threshold and the individual then becomes symptomatic.
In a nutshell, certain antibiotics such as fluoroquinolones, damage the mitochondria. Because mitochondria turn over slowly in many tissues it takes some time for the damages to become evident. It is only after they reach a critical point (the ability to synthesize ATP fall below a pathogenic threshold), does the damage become evident.
The amount speed, severity, and location of the damage in the body depends on many factors, such as how much initial toxicity was present, health of the person at the time of the initial onslaught, and their genetic makeup, to name a few.
Take Levaquin for instance, the drug company in its application for approval stated that 87% of the drug is recovered unchanged in urine in 48 hours and approx 4% is recovered unchanged in feces, that totals to 91%. Off the remaining percentage, they found that 5% broke down into desmethyl and Various N-oxide metabolites. Those metabolites have little relevant pharmacological activity.
However overwhelming anecdotal information has taught us that in something different is happening in some people. The fluoroquinolone (FQ) molecule metabolizes improperly and there is no way of knowing ‘who’ will metabolize it incorrectly. For the layman this means that it appears the drug breaks down and is not excreted appropriately but instead breaks into pieces called metabolites. The metabolites remain in cells adversely interfering with cellular operation.
It is my opinion, that once the metabolites start circulating, especially intracellularly, it is a virtual crapshoot as to how the FQ metabolites interfere with cellular operation. It is like an endless puzzle where one clue leads to another. The reason for this is because the FQ’s can interfere in numerous different ways with the normal operation of the cell. There are science papers showing FQ metabolites interfering with lysosomes, cellular signaling protein both internal and external, membrane integrity, and on and on.
You can endlessly speculate, and people do, about what happens in the cell, and you know what? You would probably be right about most educated guesses you made, because the possibilities as to the type of damage to the cell, once the metabolites are present, are virtually endless due to so many variables.
Because of the this, all the body systems have the ability to be affected. In addition, the FQ’s exert tremendous epigenetic pressure on both the nuclear and mitochondrial DNA within the cell. This can ‘switch on’ genes in combination that can lead to pathogenic (disease) processes.
Let me tell you a brief story… Once this young woman came to me and asked for help. With each and every avenue of help I offered up for consideration, she instantly shot it down. She would tell me “Well, I analyzed this person’s case or that person’s case and I am worse than them.”
Believing herself to be wise, she dug herself into a trap that I have seen time and time again; constant comparison to others that leads to assumptions of doom and gloom. Yes, you do know your body, but you are not smart enough to predict the future. If you can predict the future, let me know, for I have some sports teams that I would like to bet on or stocks that I would like to invest in! Anyway, this young lady dug herself into a pessimistic trap that was eventually beyond the reach of anyone. The ironic part is that she constantly reached out for help and then would tell each person why she could not be helped. It became a vicious self-defeating cycle.
Some of the absolute worst offenders are those who are floxed ‘intellectuals.’ It is not uncommon for some of them to think themselves into a quagmire of despair. Like everything else, pain, suffering, and quality of life are hard to quantify and measure. They are relative to the point of measurement and that point is variable per person and situation. It takes professionals years of training and experience and even then, gauging suffering is tentative at best.
Here is what I know. Predicting your floxing outcome is like making a prediction about the end of the world: The minute you make it, it will probably get proved wrong.
Let me finish this section with one last small story. There was this middle-aged woman who became floxed. Initially, like so many others experiencing a ‘shotgun’ style reaction, her life was in absolute turmoil. I kept telling her that in the first couple of years there will be many ups and downs and at times you will feel like you are dying, but nothing with the FQ’s is set in stone. Yes, one day you can feel like dying and the next you could start healing. But alas, every time I offered a suggestion, she countered with extreme negativity. Responding to her was an exercise in futility and it got to the point that she would get mad at me if I did not answer her pleas in a timely fashion.
One day I saw her posting on Facebook that she was healing. She was going for long bike rides and started living life again. Just few months earlier, she was contemplating suicide because life was so miserable. She still has some lingering problems but she alive and living a life worth living. Please never say never!
It is my opinion that two processes create the symptoms that we see present; both mitochondrial cytopathy and cellular senescence. Both of these pathogenic processes overlap and are interrelated.
These pathogenic processes cause the vast array of symptoms that we see and encompass skeletal muscles and tendons, and dysfunctions in the nervous, visual renal, digestive and circulatory systems. In a sense every body system can be impacted.
Undergirding these symptomatic processes is the driver of FQ induced defects in the respiratory chain inside the mitochondrion. This assembly line of protein complexes is the heart of the mitochondria and a malfunctioning chain can cause a dizzying array of symptoms.
Some of you will understand what I just wrote and others will just go “huh?” Seriously, I could write for pages and pages but believe me the FQ’s have the ability to insert themselves into almost every body system. That is what makes them such potent antibiotics and such a nightmarish ‘hell’ when things go awry.
The Fluoroquinolones (FQ’s) were released in the 1970s. Please note that it wasn’t until 2013 that the FDA started sounding the warning, and even then, it was a lukewarm one. The adverse events of FQ’s are disparate and by all definitions, outrageous. They range from permanent nerve damage, tendons spontaneously rupturing, organ failure, psychosis, and literally dozens more. Most doctors consider this broad ranging pathology preposterous and they simply can’t wrap their heads around a differential diagnosis to include the FQ’s. Hell, most of them don’t know what to look for or how to connect the symptoms. Because of this, they don’t get documented.
The FQ’s kill and damage through so many mechanisms that it is not usually connected by doctors.
When nalidixic acid, a non-fluorinated quinolone antibiotic and the first publically available quinolone, was first released and thereafter for some time, researchers did not know about mitochondrial DNA. Because of this, how the first quinolones and the subsequent fluoroquinolones affected the mitochondria was not on the researcher’s radar scope. The ignorance continued on to the present day while the FQ snowball was rolling downhill ever faster and getting much larger.
Remember, there were other FQ’s, such as trovafloxacin or temifloxacin, that had “good” safety profiles, that passed all medical standards, and then removed when they started killing patients. The damage these two FQ’s inflicted was immediate, in your face, thus they had to be dealt with. In fact over half of all created FQ’s have been removed from the market because of safety concerns. But even more important, what about all the disease machinery that the FQ’s start in motion that kills slowly over time? The answer to that question is both mind boggling and preposterous as well. There really is no measure for this type of insidious damage. This style of damage is ‘off the radar scope’ of most doctors.
These drugs set the stage for scary long term damage. Due to damaging the genome (both nuclear and mitochondrial) this damage may not be readily apparent for weeks, months or years. Just because the damage is not readily apparent does not mean it does not exist.
I frequently get contacted, usually from someone new to this plight, about how to detox from the Fluoroquinolones (FQ’s). This is a complex subject that I admit is hard to clarify given the varied amount of information that is found on the Internet, much of it based on flawed paradigms. Let’s briefly look at detoxification and, despite what you have read or heard, how most of it does not apply to FQ’s.
First of all, detoxification is unquestionably a natural process that is always going on in our bodies. Numerous organs and systems including the liver, kidneys, lungs, lymphatic system, gastrointestinal tract, and bladder all contribute to the regular elimination of the natural metabolic byproducts of digestion, activity, and cellular regeneration.
Many aspects of our modern life can make the work of these organs much harder and given our mass produced, highly manufactured, chemically laden society, the burden placed on these organs can eventually lead to a disease process. However many in the alternative world erroneously suggest that detoxing is possible from FQ’s. This type of thinking presents an ignorance about how the FQ’s work in the human body.
Now, let me say that it is highly probable that, for many, the FQ’s interfere or ‘throw off’ many metabolic processes. And for some, eating healthier, juicing, or some other safe detoxifying procedures provides some relief from some of the unpleasant symptoms incurred by these various malfunctioning metabolic processes. Unfortunately, it does not actually address the underlying problems associated with FQAD. That is why we do not see any better healing outcomes via those who pursue alternative healing methods.
Over the last decade i have talked to hundreds of FQ victims and have had direct and indirect interactions with many, many more. I have worked with researchers, met with the FDA, and have been foolhardy to pay out of the pocket in the past for expensive health consultants. I have watched groups of people take three paths in an attempt to heal; #1, do nothing, #2 pursue alternative healing methods either through naturopaths, holistic healers, etc…, #3 rely on traditional doctors and traditional medicine. With the slight exception that the group choosing to follow path #3 has seems to have a slightly worse outcome (give or take a few percentage points), no path has resulted in greater healing over the other. If a form of detoxing would work, everyone would know about it and everyone would use it to heal and move on with their lives.
- FQ’s are synthetic not natural.
- FQ’s can damage both nuclear and mitochondrial DNA.
- FQ’s can change gene expression and start pathogenic processes.
- FQ’s do not need to remain in the body to cause long term damage via the above genetic avenues.
- FQ’s can damage other cellular structures besides DNA.
- FQ’s can permanently alter the gut microbiome.
- FQ’s can upregulate MMP’s causing long term connective tissue problems.
- and on and on (I could literally make a list with over a hundred entries).
So, a simple detoxing regimen may help in the short term, however the ‘detoxing’ paradigms of alternative medicine do not apply to a synthetic DNA damaging/altering chemotherapeutic agent that should not be handed out like candy by our ignorant medical establishment.
No one gets out completely unscathed. The level of damage caused by the FQ’s is imperceptible in some people and very perceptible in others. If you have an adverse event response to the Fluoroquinolones (FQs) your body took a tremendous hit from a toxic perspective. It reached critical mass. Even though some people recover and go one to live a fairly normal life, there usually is some sort of permanent cellular damage. For instance a high intensity athlete may never go back to performing at the same intensity level as before. But before you get super upset about any of these statements keep in mind that substances that are seemly innocuous, such as hair coloring, can cause permanent cellular changes and damage. I am not trying to downplay the seriousness of any FQ adverse event, just make sure to keep a balanced perspective.
Seemingly quite novel in the syndrome that it manifests, the only remote parallels I can draw with an adverse event to FQs is it is akin to having a very large dose of anti-tumor chemotherapy. I have had some people criticize that example saying they know people who have had systemic chemotherapy who are in better shape than many floxies. However, conversely, I know people who had had chemotherapy who were devastated by it, and I know people who had FQ’s who had no apparent reaction to it.
Fluoroquinolone (FQs) antibiotics are very strong and are, in fact, chemotherapeutic agents in their method of action and adverse event profile. Many times safer antibiotics are available. FQ toxicity (FQAD) is real. Become an informed patient and know the risks involved.
Posted by My Quin Story on Saturday, February 4, 2017
If you look at those receiving systemic chemotherapy, many, if not all, will have some lingering negative effects and reduction in some aspect of functioning. This varies from person to person just like floxing varies from person to person. Again, although novel in its form of damage, FQ damage is akin, not identical, to receiving strong chemotherapy and your ability to metabolize the dose. Some damages from systemic chemotherapy, such a neurological and ‘late effects’, are also seen in FQ damage. However, FQ damage, for the most part, can also manifest in ways that are much worse that standard damages seen in chemotherapy.
Again, personal metabolization variables dictate how well your body can handle the onslaught that was placed upon it by the FQ’s, so they subsequently dictate recovery timelines and levels of functioning as well. Again factors such as inherited genetic traits, age, environmental variables, all come into play, with genetics being one of the biggest players.
Cycling after the initial adverse event has to do with homeostasis. Homeostasis is the property of a system in which variables are regulated so that internal conditions remain stable and relatively constant. When you are healthy all of your internal conditions remain stable and you are in a state of homeostasis. When something comes along with a severe toxic onslaught, such as the fluoroquinolones which have the ability to disrupt many body systems, your bodies’ homeostasis is thrown off.
Various cycles in the body such as sleep, breathing, hormonal, blood sugar regulation, stress/tension, etc…all get disrupted. When these systems are out of balance or malfunctioning your experience unpleasant symptoms. Them more the disruption the more serious the experienced reaction or event.
Despite this, it is your bodies’ natural inclination to seek balance or homeostasis. After a while weeks or months your body adjusts to its new level of functioning even if it is much worse than before. Although healing can take place, a subsiding of symptoms does not guarantee it. Often times it just means that an adjustment has taken place. Often the floxy perceives that things have gotten better when in fact the body is now living on a precarious ‘edge’ that can easily become unbalanced.
Think of your health as now balancing on a knife edge as opposed to a wide solid platform. Before it used to take a lot of disruption to throw you off balance. Now that you are balancing on a knife edge, it takes very little pressure to throw you off balance.
Once your are balancing on this new edge any little stress is placed upon the system such as physical exertion, eating a new food, exposure to a new chemical, etc… can throw you off. What causes you to be ‘thrown off’ your edge is very different from person to person as well as intensity.
Many people call this ‘re-floxing’, when in fact it is nothing more than the bodies’ homeostasis being unbalanced again.
If cycling becomes farther and farther apart with less intensity, it is a good sign that some healing is taking place. Keep in mind that people cycle differently. Some individuals experience severe cycling while others experience mild cycles.
This cycling can be, and often is, very unnerving for the floxed person causing depression and psychological stress. Often times they think the worst is behind them. However, one of the worse things you can do is compare your reaction or cycles to another floxed person. Remember there are no timelines for healing set in stone.