This section contains the following topics I’ve written some drafts on. I may edit them further, and maybe separate them out into separate pages someday. In the meantime, this section is rather long, and divided into the following topics:
- Which One Do I Have?
- Post-Viral Syndrome, Post-Lyme Syndrome, Post-Fluoroquinolone Syndrome
- Fluoroquinolone Toxicity: A Window into the Common Underlying Mechanisms of These Syndromes?
- Post Ebola Syndrome and Post Fluoroquinolone Syndrome
- Those Perplexing Antibodies: Autoimmunity, Lyme, Natural Autoantibodies
- What Else We All Have in Common: Welcome to the Merry Go Round of the Diagnostic Process
- No . . . Not Really
An underlying theme in this section is that FQ ADR’s appear to cause, trigger, or mimic many other “Chronic Invisible Illness” symptoms. If FQ’s can cause the same or similar symptoms as these other conditions, then it only makes sense that some of the underlying biochemical, genetic, or epigenetic causal mechanisms may be similar as well (see here, here, and here). In my opinion, studying FQ adverse effects and the underlying mechanisms could probably teach us a lot about many of these other conditions as well. This means that millions of people suffering from these conditions could potentially be helped by studying FQ ADR’s. This is one reason I wrote Researchers: Why Study FQ-Induced Reactions?
Which One Do I Have?
Take your pick. At this point in time, between your physicians and anything you might read on the internet, it could be any or all of them. My acute reaction was initially more tendon based, and severely so, which is a hallmark of FQT. But this initial reaction set off a cascade of events, eventually morphing over time into multiple symptoms experienced by so many with numerous or multiple diagnoses. There are a whole host of traditional (mainstream) and alternative diagnoses I could now be diagnosed with, depending on which physician or naturopath I choose. FQT, Lyme, Sjogren’s, Mitochondrial Disease, Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Lupus – take your pick. And the list doesn’t end there. Throw in things like the more descriptive conditions such as Trigeminal Neuralgia, Tinnitus, Dry Eyes, Meniere’s, Inappropriate Tachycardia Syndrome, POTS, Peripheral Neuropathy, Dysautonomia, Mixed Connective Tissue Disease, Somatic Symptom Disorder, Interstitial Cystitis, Adrenal Fatigue, Candida, Leaky Gut, Fluoride Toxicity, MTHFR, Heavy Metal Toxicity, Mold Toxicity, lots more I’ve forgotten . . . . and the list goes on and on. None of these even include the Autoimmune Thyroid Disease I actually have been objectively diagnosed with based on high antibody titer results from multiple labs across the US.
Post-Viral Syndrome, Post-Lyme’s Syndrome, Post-Fluoroquinolone Syndrome
Although it became apparent to me over time that I could be diagnosed with any or all of the above, here, I will focus on viruses such as EBV and CMV, bacteria such as Lyme, and antibiotics such as FQ’s. This is because all of these have been highly suspected of being the initial cause of many of the above diagnoses at one point or another. Yet, despite these differing initial causes, the end result often appears to be the same, resulting in a familiar and similar “syndrome of symptoms” for many of us. And in my opinion, this is significant, and something to look at and consider.
All of us are exposed to any number of viruses throughout our lifetime. For example, everyone gets the common cold, 95% of us have antibodies to the EBV (Epstein-Barr virus), and 50-80% of us have antibodies to CMV (Cytomegalovirus). Most of us will get over these viral infections without incident, or without even knowing we contracted the virus at all. But some of us won’t. Some of us will develop long term chronic symptoms, similar to my current “syndrome of symptoms”. Many of these people say their initial symptoms appeared to start with symptoms indicative of some kind of acute viral infection, ie, a typical “flu”, “mono”, “sore throat”, etc. Some of these people even developed these symptoms within hours or weeks after a flu or other viral vaccine. Many of these people will eventually be diagnosed with autoimmune conditions, whether they are seropositive or not. Actual eventual diagnoses of these long term “syndrome of symptoms” will vary, as I listed above. But collectively, they could be called “Post-Viral Syndrome”, no matter what the diagnosis.
Many people are exposed to the bacteria Borrelia burgdorferi, the Lyme organism, or other similar tick-borne organisms. In humans, statistics vary, but there is always a portion of the healthy, asymptomatic population that have the positive antibodies for Lyme disease. Like many viruses, Lyme in general is considered a “self-limiting” disease, meaning, that most people exposed clear the infection on their own quite well, with minimal or no symptoms, or without even knowing they have it. But some people don’t. Some people will develop long term chronic symptoms, similar to my current “syndrome of symptoms”. Just as with “Post Viral Syndrome”, some people develop chronic “Post Lyme Syndrome”, whether or not they have been treated with antibiotics during the acute phase, resulting in the same or similar “syndrome of symptoms”.
Most people in this country have been exposed to Fluoroquinolone Antibiotics as well. And most people take these antibiotics without incident. But some people don’t. Just as with Post-Viral and Post-Lyme Syndrome, some people, such as myself, develop “Post-Fluoroquinolone Syndrome”. An argument could be made that since antibiotics are often prescribed for infections, both bacterial and viral in nature, that this “Post-FQ Syndrome” could really be due to Post-Bacterial or Post-Viral Syndrome. However, this argument doesn’t really hold up for those of us who felt healthy and fit and took these antibiotics for a simple UTI. It also doesn’t hold up for those who took the antibiotics prophylactically to prevent infection “just in case”, such as before a knee surgery, for example, or while traveling to prevent a “traveler’s diarrhea” they don’t yet have. An argument could also be made that Post-Viral and Post-Bacterial Syndromes are really Post-FQ Syndrome too. I would imagine this argument wouldn’t hold up for those people who developed Post-Viral and Post-Bacterial Syndromes without ever taking an FQ specifically. I also suspect Post-Viral and Post-Bacterial Syndromes have been around as long as viral and bacterial infections have been around, although they may not have been recognized as much in the past. People probably didn’t survive the more serious infections long enough to develop the chronic post-symptoms, or if they did, probably didn’t survive the post phase either.
So I don’t think anyone can definitively say that Post-Viral and Post-Bacterial Syndromes are really Post-FQ Syndrome — or vice versa. However, clearly all three syndromes have many things in common. In all three, most people in the population tolerate the initial insult well, and recover and move on – while some people in the population are felled with a “Post-Insult Chronic Invisible Illness Syndrome”. Why are only some people in the population affected? What does this affected group all have in common, regardless of the initial insult? Of the affected group, although symptoms vary widely, there appears to be a bell shaped curve “syndrome of symptoms” that many people have in common. Why are these symptoms so similar? Why are three different insults – bacterial, viral, and drug induced – causing a similar constellation of symptoms? A key word here is “constellation”, because we’re not just talking about one or two symptoms in common – we’re talking about a group of symptoms that appear to be linked. And why is this syndrome very long term, or often permanent? They also tend to have many diagnoses in common as people make the rounds in both the traditional mainstream and alternative communities to get answers to these chronic and disabling health problems. And I think there is something to be learned from this.
Fluoroquinolone Toxicity: A Window into the Common Underlying Mechanisms of These Syndromes?
With the fluoroquinolone antibiotics, here we have a drug that knowingly targets DNA replication and repair enzymes and DNA directly, as well as creates epigenetic modifications on DNA. It is also a very well known chelating agent, and is also promiscuously binding to or inhibiting any number of known (tyrosine kinases, tyrosinase, tyrosyl -DNA-phosphodiesterase, dioxygenase demethylases and collagen prolyl 4-hydroxylases, HIF1a, V-ATPases, CYP1A2/3A4) and other unknown proteins in the body as well. These antibiotics, often given to a physically healthy population, are suspected in unmasking or causing neuromuscular disorders such as Myasthenia Gravis-like symptoms, Parkinson’s Disease, ALS, permanent peripheral neuropathies, Alzheimer’s and other central nervous system disorders, Mitochondrial Disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, cardiac and ocular abnormalities, and severe tendon disorders often seen in numerous endocrinopathies, rheumatic, and autoimmune conditions. The “syndrome of symptoms” that develop with FQT often mimic the millions of people who find themselves with “Chronic Invisible Illnesses” for which no cause or even a definitive diagnosis exists, such as seronegative ‘autoimmune’ conditions, chronic fatigue syndromes, chronic Lyme Disease and even chemotherapy patients. In other words, “Post-FQ Syndrome” has much in common with “Post-Viral Syndrome” and “Post Lyme Syndrome” and even “Post-Chemo Syndrome”. Viruses hijack host DNA, spirochetes with their limited genome depend on host cell metabolism, and both chemo and FQ drugs target specific proteins and DNA causing similar adverse effects. Surely there is something to be learned from this.
If we get rid of all the political issues surrounding the idea of studying the adverse effects of these antibiotics, we’re left with a drug that has the potential to teach us a substantial amount about a conglomerate of diagnoses with a common constellation of symptoms. If FQ’s can cause the same or similar symptoms as these other conditions, then it only makes sense that some of the underlying biochemical, enzymatic, genetic, or epigenetic causal mechanisms or predispositions may be similar as well. These FQT adverse reactions often mimic other conditions (many chronic invisible illnesses), and may provide a window into these conditions, genetic or otherwise. This means there is a much wider audience and population than “just FQT victims” that could benefit from researchers studying FQT. Again, chronic seronegative Lyme Disease, chronic seronegative Sjogren’s Syndrome, and chronic long-term FQT often have many, many symptoms in common, to the point that they are indistinguishable via symptoms alone. Yet, one condition is bacterial-induced, another is autoimmune, possibly viral- induced, and the third, FQT, is drug-induced. For me, the question is not what the specific diagnosis is (because there are often raging arguments about this). Rather, what are the underlying mechanisms of action? What exactly is the Lyme organism doing to create and leave such devastating pathology, and what does that mechanism have in common with other viruses, toxins such as FQT, and the initiation of autoimmune diseases? What genomic or epigenomic, enzymatic, receptor, signal transduction or other damage or predisposition do we all have in common, that is affecting mitochondria as well as our other cells? If researchers from each specialty actually came together and started brainstorming and figuring out what Post Viral, Bacterial, Chemo, and FQ Syndromes have in common, I’m sure much progress would be made. And by the way, it’s not enough to just chalk it up to “autoimmune” issues and leave it at that, and attempt to treat by suppression of the immune system – an approach which happens to have a very very poor track record so far, whether we’re talking diagnosis or treatment. “Autoimmunity” doesn’t explain why only some people in the population develops it, and not everyone exposed to the same triggers. If “autoimmunity” is an end result, then there are causal mechanisms underlying and initiating that end result, and whatever those mechanisms are, viruses, spirochete bacteria, and anti-neoplastic and fluoroquinolone drugs are targeting commonalities to those underlying mechanisms. Just a few considerations could include the relationship of Manganese and Magnesium requirements of all four, cationic polyamines for the same, tryptophan metabolism for the same, iron/heme based enzymes involved with aromatics, oxygen and pH sensing enzymes, ER stress mechanisms, RAR/RXR genes and retinoids, G-proteins/receptors, purine metabolism, sphingolipids, phosphodiesterases, endogenous retroviruses activated or “let loose” due to epigenetic switches or mutations, cytokine activation/deactivation, tyrosine kinase activation/deactivation, topoisomerase enzymes, and of course epigenetic modifications and gene mutations occurring anywhere else, including non-coding regions, as a direct result of any of these insults. FQ’s create double stranded DNA breaks, probably at specific site locations, are highly mutagenic and clastogenic as a result, chelate cations such as divalent, trivalent, and polycationic proteins, create epigenetic modifications, and as aromatics, are reactive intermediates in reactions and may be acting as structural analogs for purines and/or amino acids such as tryptophan and tyrosine. I’m sure researchers much more learned than I could come up with more detailed and specific mechanisms common to all four – which would give an excellent start to exploration and eventually answers that could make a real difference for all of these syndromes.
Regardless of what the “formal diagnosis” is, I think there is a lot to be learned about each of these conditions simply by studying a drug that appears to cause or trigger them. There are thousands of permanently disabled FQT victims of all ages, both genders, and who considered themselves healthy, with no known co-morbid conditions, and were not on other drugs, available for study as a population. There are cases of multiple family members which have been affected, and even affected people with a twin. Researchers have a real opportunity here. Do the in vitro binding studies on FQ’s, as well as basic in vivo lab studies and association studies within the human population who are going to get these drugs either way. We must have something in common with each other that we were so affected by the FQ’s. Study the connections between tendons and the brain, because there is one – a strong one, and every FQ victim knows this and experiences this first hand, and there is much to be learned from this about tendinopathies as well as CNS pathologies. We must have something in common with the millions of other people with similar syndromes of symptoms, stuck in the category of “Chronic Invisible Illness” as well. The anti-malarial drug Mefloquine (Lariam), given to untold number of our veterans, and considered the “sister drug” to the FQ’s in terms of its quinolone relationship as well as similar CNS ADR profile, should be included in these studies as well (For people unfamiliar with Lariam, there is a lot on the internet about it, here is one interesting article about the Law and Order SVU episode done in 2005). The statin drugs, causing the myopathies, are another. The potential of what can be learned is huge, and the implications are great. Again, this is one of the reasons I initially wrote up up Researchers: Why Study FQ-Induced Reactions?
Trying to look for one or a few mechanisms contributing or causing these complex syndromes is often described as “looking for a needle in a haystack”. It’s an apt description, given the literally billions of places to look biochemically, enzymatically, genomically, epigenomically . . . . and all the various permutations of the interrelationships involved. But I believe the search could be narrowed down considerably by looking at 1) the commonalities of the various affected patient populations, 2) the commonalities of the known mechanisms involved suspected in causing or triggering these syndromes, and 3) both of these. A pictorial representation of what I’m suggesting might look like this:
Adding in additional stressors, such as Post Ebola, Post Vaccine Reactions (ie, Gardasil, flu, childhood vaccines), Spirochetes (Syphilis), and Lariam (Mefloquine) might narrow it down further and look like this:
Symptom wise, there are a limited number of ways the body can respond to a multitude of stressors, so even looking at “the commonalities”, we’re still left with a pretty large “haystack”. But the fact we’re looking at a “syndrome” of symptoms also would help to narrow the search further. This is the technique I used to come up with some of the potential mechanisms to consider that I listed above, by doing a simple manual literature search on known common symptoms of, and molecular mechanisms involving viruses, spirochete bacteria, and anti-neoplastic and fluoroquinolone drugs. I explore some of these topics a little more in “Additional Mechanisms to Consider” and provide extensive scientific literature references in “Additional Targets of Fluoroquinolone Antibiotics: Examples and Research” (Part 1 and Part 2).
My overall stance is that this class of antibiotics should be severely restricted in use unless or until it’s known who, why, and how these ADR’s occur, and most importantly how to prevent them from occurring in the first place, as well as providing a proven acceptable treatment for those that do get hit (see “Responsible Use of Fluoroquinolone Antibiotics” and “How to (Try) to Protect Yourself From ADR’s: The Six Big Clues I Wish I Had Seen” until that occurs). However, I question if this is going to happen in reality, and certainly not anytime soon. These antibiotics aren’t going away anytime soon either, and in fact, more quinolone derivatives are being developed every day as possible drug candidates for any number of conditions, a frightening thought (mostly for cancer, as FQ’s are chemo drugs which target rapidly proliferating cells, but also as TKI’s for a wide range of conditions, as I discussed here, and even as anti-virals: note how this paper states that “the quinolones family of drugs seem to link three different biological activities: antibacterial, anticancer, and the antiviral profiles”). As this occurs, the number of those adversely affected will continue to increase as well. Given that this is the case, I sort of took the approach of “if these ADR’s are going to be happening anyway, the least we can do is learn from them” with some of the ideas I present. I believe it’s absolutely irresponsible to keep these drugs on the market and continue studying and promoting the quinolone pharmacore drugs for everything under the sun without also acknowledging, studying, and giving equal time to the severe and disabling adverse effects they can cause in some patients. If they’re going to stay on the market anyway, it’s not only the logical, practical, as well as moral, ethical, and humane thing to do, in my opinion, it is criminal to do anything less.
Quinolone drugs, when used thoughtfully and judiciously, can obviously be very useful and helpful to have available in our arsenal against illness. But the potential adverse effects for severe and permanent bodily damage must be acknowledged, studied, and strategies for prevention and treatment employed. And by doing so, much can be learned about Post-Viral, Post-Bacterial and Post-Chemo Syndromes that millions more people are affected by as well. There are common underlying mechanisms in place here, and the fluoroquinolone antibiotics can cause or contribute to them. Start looking, researching, and studying them, and start helping millions of people afflicted with these “Chronic Invisible Illnesses”.
Post Ebola Syndrome and Post Fluoroquinolone Syndrome
I’m creating a separate topic on this because of the emerging evidence that some survivors of Ebola are also developing “Post-Viral Syndrome”, which in this case is being called “Post Ebola Syndrome”. Symptoms will sound familiar: muscle and joint pain, chest pain, fatigue, weakness, hair loss, memory loss, anxiety, mental illness diagnoses, hearing problems, and vision problems, including blindness. Given that Bayer has so “generously offered to help out in the Ebola crisis”, it’s understandable that many FQ victims question as to whether or not this syndrome is really “Post-FQ Syndrome”, at least in part. I think it’s a legitimate question, and one that I hope is being actively studied. I hope records have been kept as to which Ebola survivors (and non-survivors) received FQ antibiotics versus another class of antibiotics for comparison. This may be a way to help distinguish Post Ebola Syndrome from Post FQ Syndrome, and by studying this phenomenon, lessons learned here may help all of us with any of these syndromes.
As a clinician myself, I can’t argue against providing antibiotic coverage in a viral disease as devastating as Ebola, which can cause bleeding of internal organs, leading to potential internal necrosis and severe secondary bacterial infections. We’re not talking about a simple UTI or chronic sinus infection here; we’re talking about a potential life threatening bacterial infection that can develop with astounding rapidity as a consequence of a severe viral infection, especially in an immune compromised patient in less than ideal sanitary situations. In my opinion, antibiotics very much ARE warranted in this case, despite the initial disease being viral. As a clinician, I would not want to take the risk in a case of Ebola of not providing antibiotics if I had access to them, simply because of the nature of this life-threatening disease. I also would not “wait to see if a bacterial infection developed” if I had a choice, because by then, it would most likely be too late in an immune compromised patient. And if I was a patient going through Ebola, I would want antibiotics on board for myself for these reasons. However, as a victim of FQT, and knowing what I know now, I would NEVER use a fluoroquinolone antibiotic as my first choice here. If FQ’s can fell perfectly healthy and athletic people in developed countries, just imagine what they can do to people when they are at their most vulnerable, immune compromised, and physically fighting for their lives due to Ebola. Given that both FQ’s and viral infections in general can cause these “Post-Insult Syndromes”, getting an FQ during the acute stage of Ebola could easily be a major “double whammy” for this population. FQ’s would be dead last on my list of choices for antibiotic coverage in Ebola patients, used only as an absolute last ditch measure if nothing else existed. I’m not sure what the antibiotic availability status has been during the crisis, but if antibiotics were in short supply, perhaps this is why Bayer decided to step in.
However, with my newfound suspicious nature towards what the true motivations of Pharma companies in general may be, I also can’t help but question why Ciprofloxacin, rather than a non-FQ antibiotic, was chosen to be donated in the first place. There have been complaints and accusations made before of Pharma “experimenting” on vulnerable third world populations with FQ’s to see what the affects might be. There are plenty of cheaper, readily available antibiotics with acceptable coverage, and I hope that some of those were donated to the cause as well. If not, why not? Cipro isn’t even a first choice for anaerobes. I’m no Ebola expert, but I would think anaerobic coverage would be a concern in Ebola patients who develop secondary infections given we’re looking at internal necrosis of organs possibly occurring. Or might it have been to test their “anti-viral” potential? An interesting thought puzzle to ponder, given that these “Post Syndromes” can be caused or triggered by both FQ’s and viruses.
Studies are being initiated into Post Ebola Syndrome. Whether those studies include looking at antibiotic usage and different types of antibiotics used, I don’t know. But I certainly hope there’s an awareness of this possibility of Post-FQ Syndrome being a potential part or cause of Post Ebola Syndrome. If Post Ebola Syndrome turns out to be more due to the virus itself, I hope studies into those mechanisms will be done and considered and extrapolated to studies of these other syndromes I’ve discussed here as well. At the time of this writing, a case of re-activated Ebola appears to have occurred, causing severe symptoms including meningitis. Interestingly enough, this person also developed “thyroid problems” post Ebola, once again suggesting thyroid axis vulnerability and involvement with these “Post-Insult Syndromes”. Initial viral infections, as well as vaccinations, are often suspected in “Post-Viral Syndromes”. With Ebola being as dramatic and at the forefront in the clinical and research psyche right now, I hope that whatever is learned about “Post Ebola Syndrome” will spill over and cross over into some of these other syndromes as well. I’m sure there is a lot to be learned here. Search on “Pauline Cafferkey” and “Ebola Virus” to keep updated on this ongoing issue.
Those Perplexing Antibodies: Autoimmunity, Lyme, Natural Autoantibodies
I decided to spend some time addressing this topic simply because antibodies are so often used as a biomarker of disease or “something wrong”. The problem, however, is that it’s not a very good biomarker overall, and simply having recognized antibodies – or not having them – doesn’t tell us much about our Chronic Invisible Illnesses or how to cure them. Increasingly, many conditions are thought to be “autoimmune” in nature, even if diagnostic antibodies (or other biomarkers) haven’t been found yet. The immune system is incredibly complex, and “antibodies” are only one part of it. However, traditionally as well as currently, “antibodies” are used as a marker of “autoimmune” conditions, if for no other reason than it’s the best we’ve got right now. The problem becomes when “antibodies” are labeled as “always a bad thing” and the “only and definitive” cause of our “Chronic Invisible Illnesses”, even though “antibodies” may only be a part of the story – or not involved at all. For these reasons, here, I focus on “antibodies” as part of the “autoimmune conundrum”. I’m also including interesting research reading at the end of this section on natural autoantibodies, which suggests that these antibodies may play a role in a variety of functions, not just the more well known “immune” functions.
Antibodies for most of us are a good thing, until they’re not. They literally protect us and keep us alive from dangerous pathogens. If there is ever a true threat of a major Ebola outbreak in this country, I’m pretty sure there will be lines for whatever vaccine they manage to create to fight it. This would be a case where you want those antibodies, because the alternative is pretty drastic. Millions of years of evolution have given us antibody production, to at least give us a chance of surviving the pathogens that surround and infiltrate us every day. Untold zillions of people without antibody protection have died throughout the ages. As one example, it’s estimated up to 90% of the Native American population were wiped out due to smallpox from the European Invasion, because this population didn’t have the protection antibodies provide. And of course Europeans themselves have had huge numbers of their population cyclically wiped out throughout the ages due to any number of diseases due to lack of resistance or antibodies. So these are cases where having the protective antibodies or not were literally the difference between life and death.
When it comes to modern day antibody testing, having antibodies against certain pathogens usually means you’ve been exposed to that pathogen in some form in the past, not that you have the disease now. So, for example, I have antibodies against polio, smallpox, and rabies floating around in me, because I’ve been vaccinated for each of these. Importantly, and significantly, I don’t have polio, smallpox, or rabies – even though I have the antibodies. This is an excellent example of how just because a person has antibodies against certain pathogens, doesn’t mean they have the condition. And I’m glad I have these particular antibodies, because I’m old enough to have known people with polio, and have relatives who know people who died of smallpox. And there are still people in many places of the world who still die of rabies today. Rabies is still within the US as well, and so I always checked my rabies antibody titers to make sure I was adequately protected in my profession as a veterinarian. I also still have antibodies to many of the viruses I’ve been exposed to throughout my life, as most people do, but as far as I know, I don’t have any of those viral illnesses now. And because of these antibodies, I probably am still protected against those particular viruses and strains. (Just in case anyone’s wondering, I have never had a flu vaccine, and other than one rabies vaccine and two tetanus shots as an adult, no other vaccines other than my initial childhood ones way back in the sixties. I also went through natural chicken pox [no vaccine], and I’m not sure about measles vaccination).
Lyme Disease is a good example of where the whole issues of “are antibodies good or bad, and what do they mean” start to get a little more fuzzy. For starters, Lyme Disease is caused by a bacteria, not a virus, and antibody production and protection against bacteria are never as good as antibody production and protection against viruses. But in theory, people with Lyme antibodies should be better protected against the symptoms of this disease. In theory, having the antibodies doesn’t necessarily mean you have the disease – just that you were exposed to the organism in the past and you should now be protected from it. In theory, people without the antibodies, or the ability to make them, should succumb more to the disease than people who do have the antibodies. There are people who are seropositive for Lyme – meaning they test positive for the antibodies to Lyme – and yet they remain asymptomatic and totally healthy. On the other hand, there are people who are seronegative for Lyme – meaning they don’t test positive for the antibodies – and yet, they are highly symptomatic and diagnosed with Lyme Disease. (I am purposefully staying away from what the “right” tests for Lyme are, because those controversies can be easily found elsewhere on the internet).
Lyme Disease in people may be different than Lyme’s in dogs. But being a veterinarian, I saw this a lot first hand in my profession of vet med, because, unlike in human medicine where most humans are only antibody tested when symptomatic, we run the annual tick-borne tests on dogs every year whether or not they are symptomatic. It’s simply part of the annual health screen. So millions of dog across the country, and virtually always in the Lyme endemic areas, are monitored every year for this. And it turns out there were plenty of asymptomatic seropositive dogs, especially the ones out in the country, out on the farm, or hunting dogs. Year after year, there were strongly Lyme positive dogs who were perfectly healthy and lived to ripe old ages, sometimes remaining seropositive their entire lives. What to do with asymptomatic seropositive dogs is an ongoing controversy in vet med, and algorithms exist which morph over time depending on the current beliefs. Lyme Disease – in people or dogs, is very, very real, can be very devastating and life-altering, and I certainly hope no one reading this is thinking I’m trying to minimize or deny the symptoms of Lyme Disease. I hope it’s clear from my entire website this isn’t the case, for Lyme or any other Chronic Invisible Illness. Like everyone else out there, I want better research and better diagnostics into these conditions (not to mention, treatment), and my point here is that Lyme is another example of how those perplexing antibodies aren’t very definitive either way in this endeavor.
“Autoimmune Diseases” in general are another example of where the whole issues of “are antibodies good or bad, and what do they mean” are also very fuzzy. We currently live in a time when “autoimmune diseases” are diagnosed with “autoimmune antibodies”. There’s a general feeling and agreement out there that these autoimmune antibodies are doing something bad, even if we don’t really know what they’re doing at all. It’s been reported that a full 50% of people diagnosed with Sjogren’s Syndrome, an “autoimmune” disease, don’t have the antibodies used to diagnose the condition, ever. And for some Sjogren’s patients, their antibody status seems to wax and wane, sometimes testing positive, sometime testing negative over time. Yet other Sjogren’s patients always test positive with these “diagnostic” antibodies. These “mystery diseases” and “chronic invisible illness” diseases are so perplexing, and these antibodies are the only thing we can find right now that seem to have something to do with these conditions, that it’s often times the best we’ve got right now in terms of biomarkers and diagnoses. And as with anything else in life, there is a “herd mentality” among physicians, scientists, and researchers, where right now, everyone is “chasing the antibodies” in an attempt to reach definitive diagnostics and treatments. Right now, “autoimmune disease” usually means “bad antibodies turning against our bodies”. But the reality is, no one really knows what these antibodies really mean for many of these conditions. And just like with Lyme, both symptomatic – and perfectly healthy, asymptomatic people — can have all kinds of antibodies floating around in them, including the ones implicated in disease.
There was a time “everyone” believed the earth was flat, until it wasn’t anymore. And I suspect it will be the same way with many of these autoimmune conditions as well. I suspect that moving beyond antibodies to underlying mechanisms of disease will be a transition the medical and scientific establishments will have to make before any real progress will occur in diagnosing and effectively treating many of these conditions. When it comes to my own diagnosis of Hashis’ and Graves, based on antibody testing and symptoms, I too, have followed the “herd” in terms of my opinions and interpretations of what’s going on with me, because it’s the best we’ve got right now. It’s the best I had in an attempt to figure out my own health problems as well. But I remain open as to what these antibodies in me really mean, and I suspect my problems run much deeper than “antibody production” – and may even lie elsewhere altogether. On the other hand, “It Felt Like a Homeostasis Problem” in my case, and if natural autoantibodies participate in maintaining that homeostasis, it could be that my antibody status was a true marker of “something wrong” somewhere, including with these antibodies themselves.
I’m also using Lyme Disease as a topic for antibody discussion because I’m aware there are people out there who will whole heartedly believe I have Lyme Disease, regardless of what testing I have or have not done, or physicians I have or have not seen. I don’t happen to believe that I have Lyme, nor do I believe I’ve experienced any “herx reactions” during my acute reactions with Cipro or anytime during this ordeal. However, I’m well aware my long term chronic symptomatology, especially in the later stage/past few years of my condition, is quite similar, if not indistinguishable, from many with Lyme (or Sjogrens, or Mitochondrial Disease, or Chronic Fatigue . . . etc). What I do believe very much, is that there are underlying common mechanisms of action in many people with many “Chronic Invisible Illnesses”, including Lyme, and that if research could find some of those commonalities, a lot would be learned about all these conditions and real progress might be made in terms of both diagnosis and treatment of them. At this point in time, after all the research I’ve done, I actually don’t really care so much about which of these diagnoses I might be defined with, despite the raging arguments about this. Attempted treatments, whether mainstream or alternative, for all of them are similar, with varying rates of success. I’m more interested in the fact that many people have similar symptoms, no matter what the diagnosis, no matter what their antibody status is, and no matter what the initial triggering event seems to be. And I hope that someday, researchers from all the various disciplines of these varying diagnoses will start coming together and questioning and learning from one another in addition to studying their own particular niche.
The statistics are astounding for the percentage of the US population suffering from either an autoimmune disorder, chronic invisible illness, or Lyme Disease, here and here. Numbers are less for FQT, but as with the other categories, no one really knows the full impact and breakdown of what’s causing what and what the overlap is in the statistics of these disorders. No matter how you break it down though, the overall numbers are staggering, and are growing.
Interesting reading on natural autoantibodies and seropositive asymptomatic Lyme in humans:
Natural IgG Autoantibodies Are Abundant and Ubiquitous in Human Sera, and Their Number Is Influenced By Age, Gender, and Disease Download Full PDF for an interesting read
The significance of natural autoantibodies
The immune system, natural autoantibodies and general homeostasis in health and disease
Characterization of natural autoantibodies: A case for functional significance
Natural autoantibodies: from ‘horror autotoxicus’ to ‘gnothi seauton’
Natural autoantibodies and associated B cells in immunity and autoimmunity
Protective natural autoantibodies and lupus pathogenesis
Protective natural autoantibodies to apoptotic cells: evidence of convergent selection of recurrent innate-like clones
Natural Autoantibodies are Biomarkers of Immunosurveillance System
Properties and Function of Polyreactive Antibodies and Polyreactive Antigen-Binding B Cells
The epitopes for natural polyreactive antibodies are rich in proline “There is a long list of known proline-containing epitopes on autoantigens. This is not surprising since proline commonly occurs in proximity to protein–protein interaction sites (33). Proline is also important for chain conformation and protein folding, and the sequences containing proline tend to be conserved. The unique nature of proline and its tendency to appear in solvent-exposed regions of proteins probably contribute to their reputed immunogenic properties. Proline-rich motifs are also present in pathogenic bacteria and viruses (34), and therefore polyreactive low-affinity antibodies against proline-rich sequences may contribute to the first line of defense against foreign invaders. Since proline is present in most proteins at loops, turns, random coils, and in the initial turn of a helix, the immune system may recognize these structures as self-antigens and ‘‘mark’’ them for further processing.” (My note: proline is a major amino acid in collagen and tendons).
Asymptomatic Borrelia-seropositive individuals display the same incidence of Borrelia-specific interferon-gamma (IFN-γ)-secreting cells in blood as patients with clinical Borrelia infection
Longitudinal study of Lyme borreliosis in a high risk population in Switzerland
Prevalence of antibodies to Borrelia burgdorferi in forestry workers of Ile de France, France
Demonstration of Borrelia burgdorferi DNA in urine samples from healthy humans whose sera contain B. burgdorferi-specific antibodies
Autoimmune diseases may be side effect of a strong immune system. I’ve often wondered this about myself, as from an overall “autoimmune” perspective, when I look back on my life, I was a pretty healthy person, not prone to infections in general. I discuss this more in “I Believe I Had a Predisposition.”
What Else We All Have in Common: Welcome to the Merry Go Round of the Diagnostic Process
What I’ve tried to point out above, is that many of these diagnoses have an awful lot in common. And not just the symptoms, or probably even the mechanistic causes, that are the only commonalities. If you are unfortunate enough to develop some or all of this constellation of symptoms at some point in your life, welcome to the diagnostic merry go round. Based on what millions of patients before you have experienced, here’s what you can expect:
- You will most likely make the rounds to endless traditional mainstream physicians and specialists for years before you get some kind of diagnosis. Or, at least, this is what happened before the age of the internet and you could look it up yourself from “Dr. Google”. Most of these esteemed medical professionals will dismiss or deny your symptoms, and you will essentially be ‘medically abandoned’. But not before being pseudo-diagnosed with one or more of the typical “Top 40 Diagnoses”, such as “stress”, “burnout”, “increasing age” (no matter how old you are or if you’re in your twenties), possible ‘flu’, “bladder”, or “throat” infection so let’s keep throwing antibiotics at it, peri-menopause or menopause if you’re a woman, etc.
- You will be labeled a psychiatric case and offered endless pills, usually in the form of anti-depressants, sometimes along with addictive pain killers, for this ‘non-existent’ problem. Yes, despite the fact that “nothing is really wrong”, many of these physicians will be happy to prescribe all kinds of drugs for a problem that ‘doesn’t really exist’. For the ones that don’t, they’ll label you a malingerer, and be more up front about their medical abandonment of you.
- When you get onto the various internet forums that exist for your symptoms, you will fit right in, be welcomed with open arms by other members, and your diagnosis confirmed. Your diagnosis will be whatever forum you happen to visit.
- At each forum, you’ll be told that most physicians don’t know about or recognize your particular diagnosis, and you have to keep going to various physicians until you find one who will confirm your diagnosis and be willing to treat. Just keep going until you find the doctor who knows, believes, and understands your diagnosis enough to try treatments.
- At each forum, recommendations will be made as to where to find the ‘right’ physicians, naturopaths, or labs for your particular diagnosis. If you don’t go to these physicians, naturopaths or labs, then you won’t get the ‘right’ diagnosis or treatment.
- There are no definitive tests for your diagnosis. Your diagnosis can occur even if every single test for it turns out negative. This is literally true for every single one of the diagnoses I’ve listed so far. This is particularly true of the conditions based on antibody testing, which is why the autoimmune conditions are so perplexing. Healthy, asymptomatic seropositive people abound for every autoimmune condition, including Lyme Disease, just as highly symptomatic seronegative people abound in people ultimately diagnosed and being treated for some kind of autoimmune condition. So ultimately, whether traditional (mainstream) or alternative, it will not matter what the tests say. What you need to do is find a physician or naturopath who believes you, recognizes the symptoms, and will be willing to attempt treatment no matter what the tests say.
- You will visit endless alternative and holistic practitioners, all at your own expense. They are happy to see you, and know what’s wrong with you. You will get one or more diagnoses the traditional medical establishment dismisses, change your diet, and purchase endless supplements which may or may not help your condition. You may go through any number of intravenous treatments, adjustments, acupuncture, massage, or various other treatment modalities the traditional medical establishment dismisses.
- You will sort yourself into one or more of these diagnoses based on any number of factors, very few of which have anything to do with knowledge and objective proof of what actually causes these conditions by either the traditional or alternative medical communities. If you recover, your particular diagnosis and treatment will be vindicated, you will be grateful for the experience and all you have learned, and you can go on to help diagnose and suggest treatments for others. If you don’t recover, it’s because you didn’t “see the right doctor, do the right treatment, eat the ‘right’ foods, or follow the right protocols” suggested in any of the forums or by your mainstream or alternative practitioner. This includes not praying enough to the right god, meditating enough, having a good enough attitude, lessening your stress, experiencing gratitude for your predicament, or just didn’t believe enough – basically the alternative version of the “psychiatric” and somatoform diagnoses the traditional physicians diagnose you with.
- No matter what you do or don’t do, you may or may not recover. For all these diagnoses, some people get better, some don’t – no matter what the diagnosis is, no matter what the treatment attempts are. Time, usually in the lengths of months to years, seems to be a big factor in all of these, although for those who recover, their recovery will be attributed to whatever their latest treatment attempt was. Recovery also often seems to include a lot of coping and learning to live with your limitations, as well as self treatment with diet and/or supplements.
I’m not purposefully trying to be negative here. I think it’s important for people to have hope and to continue looking for answers, and to continue shouting out to whoever will listen about these terribly devastating conditions. Prior to the computer and internet age, these really were silent, invisible, unknown conditions. It’s only been with the advent of the internet that people who can barely lift their head or get out of bed finally have a voice through their keyboard, and are able to let the world know that that this happens more often than is recognized. All the different viewpoints, all the different opinions and information, all the arguments about the causes and treatments of these illnesses is part of the process in trying to figure it out, now that the problem is finally coming to light.
And thank goodness for these internet resources, since the curtain has been pulled back on “the wizard of Oz” and it’s become apparent that the mainstream traditional medical profession is as in the dark as the rest of us, and their diagnoses and treatments for these conditions are every bit as experimental and clueless as any other. Thank goodness for “Dr. Google” and the internet and the collective wisdom of the crowd, because the one thing that has become clear is that there are millions of people suffering from these chronic invisible illnesses. Initial triggers might be different, but there is no denying the commonalities and overlaps in symptoms, no matter what the diagnoses are. I learned more from the collective wisdom of the internet than I ever did from any of my degreed medical professionals about both traditional mainstream and alternative approaches to try and manage my symptoms. I personally believe the internet to be an absolutely wonderful source of information simply due to this “collective wisdom” and open information. When I was practicing, I always encouraged my clients to check out the internet and bring in their questions so we could try to sift out information that might be useful. I learned a lot from my clients this way. In return, my clients learned not only from me, but from the collective wisdom of veterinary specialists all over the world through the professional veterinary information network I belonged to. There are now also numerous “mystery diagnosis” websites popping up in an attempt to help people who can’t get any answers elsewhere, which can only be a good thing. So I’m a big believer in this open source information, as we all now have the opportunity and access to information that allows us to start seeing patterns in symptoms, and even in treatments, whether we are patients or clinicians. We no longer have to wait on and rely on limited scientific publications, which may or may not be biased, or on one or a few medical practitioners, who also may or may not be biased, as our sole source of information.
If you are a normal healthy person and suddenly break your leg, where the bone is literally snapped in two, there are no arguments about “what is wrong”. You can’t walk or put weight on the leg, you’re in severe pain, you can literally wiggle the two portions above and below the break back and forth if you decide to try this, you can see the break clearly on an X-ray, setting the break with a rod, plate, screws and/or a cast will immobilize the leg and allow it to heal, the bone will heal, and eventually, you’ll be back to normal. Like I said, there will be no arguments about this. In today’s modern world, this is an obvious problem with an obvious fix, and statistics are good now a days that you’ll recover. You won’t need to see lots of doctors who all have a different opinion, and a different approach, on treatment. No one will tell you you’re making it up, lying, exaggerating, that you’re a psych case, and if you just “walk more or start exercising more” that the break in your leg will heal. No one tells you this happened because you’re “getting older” at 20, 30, 40, 50 years (ie, no matter what age you are). You won’t need to take tons of supplements the rest of your life to heal your bone, or expect meditation or prayer to do it. There is plenty of “proof” for all to see, including you, that your leg is, in fact, broken, and there are standard protocols on how to fix it that work. And when it’s all over, you can get on with your life, if not as good as new, then almost so.
None of this happens when you get hit with any of the conditions I’ve listed, or a “Chronic Invisible Illness”. This is because no one really knows what the underlying causes of these conditions are; why some people develop these conditions from triggers most people are exposed to, or what to do about it. When it comes to ‘Chronic Invisible Conditions’, it’s as if we’re living in medieval times, with medieval solutions and attempts at healing. Someday, maybe hundreds of years from now, people will look back at these illnesses and our attempts at healing them the same way we look back at 15th century ‘medicine’. At least, I hope so, because that will mean some real progress will have been made. I’m not sure how long we as a society can continue to ignore the growing numbers of people with these chronic illnesses, and not look at the causal factors as well as potential treatments and cures.
I ended up watching many, many “history of science and medicine” documentaries over and over again during my over five year incarceration. And over and over again, I was struck by how many useless, sometimes humorous, and sometimes barbaric “diagnoses” and “treatments” have occurred and been attempted throughout most of the history of humankind. Arsenic, mercury, and lead were common and preferred treatments for any number of ailments right up through the early twentieth century. Entire populations and cultures have believed in all kinds of bizarre and erroneous reasons for the causes of disease and illness, and zillions of useless or downright dangerous “treatments” for them, often promulgated by physicians, healers, mystics, or the “gods themselves” in each society and culture, have been tried. Given the generalized infant mortality rate of 50-70% and life expectancy of 31-35 years throughout most of the history of humankind, it’s understandable that humans with their big brains and relatively newfound thinking potential in the last tens of thousands of years are trying things out to change this. Sanitation/cleanliness/hygiene, diet and exercise, and the basics of vaccination, fluids, steroids, and antibiotics in the past century have been absolutely miraculous in this endeavor, giving human beings a real, true, and significant fighting advantage for the first time in all of our history. The incredible population explosion is evidence of this. Modern medicine and life is nothing short of miraculous. And yet the recklessness, widespread, and indiscriminate use of thousands of drugs, pesticides, food additives, and pollutants changing not only the “external climate” of our environment on this planet, but our incredibly and exquisitely sensitive “internal climate” within our bodies and cells as well, is nothing short of horrific. I have always loved and been amazed at the best of human potential, but it seems the other side of being human is always there, pulling us down to the lowest common denominator with every great idea and advancement thought of, produced, and developed. If human beings actually manage to survive this external and internal “environmental toxic onslaught” over the next several hundreds of years, I suspect they will look back at this time period and wonder how we ever made it. In the meantime, more and more of us will succumb to these “chronic invisible illnesses”, at younger and younger ages, and any gains we’ve made with ‘modern life” will be lost as we succumb to these “diseases of modernization”.
No . . . Not Really
The only way these FQ adverse reactions are going to stop happening is to either 1) withdraw these antibiotics from use completely, or 2) focused research until answers to prevention and treatment are found. Do I really think either of these are going to happen? No . . . not really.
The quinolone pharmacore, and the fluoroquinolone antibiotics, are too valuable to be removed from the market completely. In fact, plenty of funding goes into studying even more quinolone derivatives – thousands of them – because they are a “hot topic” for drug development overall. Millions and millions of people take these antibiotics annually, and although the true statistics of those experiencing ADR’s (especially long term and delayed reactions) are completely unknown, it appears that for many, there is no problem with them (at least, that we know of yet). They’ve probably saved as many or more lives than they’ve harmed. It doesn’t help any that antibiotic resistance in a big issue these days. “We’re running out of antibiotics and we need the FQ’s” is the mantra the public will here from Pharma, the FDA, and the medical profession. What the public won’t hear, and doesn’t realize, is that the FQ’s are the biggest problem of all when it comes to creating bacterial resistance due to their mechanism of action: creating double stranded DNA breaks with high rates of mutation, and therefore bacterial resistance, as a result. What the public won’t hear, and doesn’t realize, is that the FQ’s are potentially severely damaging to a multitude of human cells and biochemical or genetic systems as well, creating double stranded human DNA breaks with high rates of mutation, with some delayed effects not cropping up for weeks, months, possibly years, possibly intergenerational, and that intergenerational epigenetic modifications are even more likely. What the public won’t hear, and doesn’t realize, is that there are other alternative, older antibiotics still available for use despite the resistance issue, and that if FQ’s are to be used at all, they should only be used as a last resort for a proven susceptible infection. What the public won’t hear, and doesn’t realize, is that chronic feeding of these antibiotics to our food supply animals is a huge source of the problem, and that practice must be banned outright to combat and have any success at all with the FQ- resistance problem and FQ residues in our soil and water supply in the environment. What the public won’t hear, and doesn’t realize, is that billions and billions of dollars per year are made off these block buster drugs, and that profit motive is the bottom line in their reckless use and abuse. And if tens of thousands, or even a few hundred thousands or millions of us have our lives destroyed, it’s just the cost of doing business for Pharma. So despite what the public won’t hear and doesn’t realize, do I really think these antibiotics are going to be withdrawn? No . . . not really.
As far as research goes, the news isn’t much better. There doesn’t seem to be a whole lot of interest by researchers in various specialties in working together. This may be due to the competitive nature of research, and the “system” we all live with in general, which stresses competition over cooperation and collaboration. But even within each specialty – think Chronic Fatigue Syndrome and Lyme’s – the arguments and disagreements and divisions between patients, doctors, and researchers is rampant and fervent. Even the specialties themselves seem to have a hard time getting together and working together for their own common cause. So it’s hard to picture these groups coming together into an even bigger group to learn from each other and help each other out. And as far as funding for research goes: Unless you’re a researcher justifying your research by working on the next big block-buster cancer or diabetes drugs, which can bring in billions of chronic profit streams, and possibly a Noble Prize and recognition for the researcher, you’re not going to get much funding or recognition at all. Competition for funding – and recognition/fame – are fierce in the scientific research field — as they are in any other field. And working on adverse drug reactions may be the kiss of death for your career and any hope of recognition or funding for your interest. The very last thing Pharma wants to do is acknowledge adverse effects from the products they develop, market, sell, and profit off of, and in fact, they will do their damndest to shut down any research or studies that might even hint to the contrary. Post marketing ADR’s are dead last on the list of things to study . . . if they’re even on the list at all. Since Pharma seems to have most of the money, most researchers don’t want to bite the hand that feeds them or piss them off. And it’s pretty hard to do any substantial research without money or support, or being labeled an outsider or pariah in your field. So do I really think a concerted effort will be made to study the FQ ADR’s? No . . . not really.
As far as corporate greed goes, it’s nothing new here either. If you live long enough, you will see the same old story over and over again, whether in the pharmaceutical industry or any other industry. I mean, does anybody really believe that the folks in the automotive industry, the processed food industry, the pharmaceutical industry, or any other industry, actually cares about your health and safety more than they do their own profits? Of course not – they’ll simply wring out every last dollar from you before they get caught with faulty airbags or seatbelts, toxic ingredients in food, or poisonous drugs. I suppose the day may come when the rampant and indiscriminate use of the fluoroquinolone antibiotics will go the way of thalidomide, DES, and most recently, Vioxx, but not without a hell of a fight. Simply look up any of these previous “wonder drugs” to see how many people had to be killed, maimed, or born with birth defects before FINALLY these drugs were pulled from the general market or greatly limited in their use. My own mother was “prescribed” cigarettes – yes, that’s right – as part of her “prenatal care”, she was told to start smoking by her doctor while pregnant with my younger sister “to prevent hemorrhoids”. We can laugh, or be aghast now at such a notion, but an entire generation, including the medical profession at the time, was repeatedly brainwashed by the corporations manufacturing these products, and they would leave no stone unturned in promoting the “health and safety” of their products for the sole interest of their own profits (see here and here). We no longer have cigarette ads, but Pharma has replaced them with all their endless direct-to-consumer TV ads (which in my opinion, should all go the way of cigarette ads – OFF THE AIR completely). “Corporate greed” has been around forever, no matter what it is they’re selling. So do I really think that’s about to change? No . . . not really.
At the time of this posting, the November 5, 2015 FDA Antimicrobial Drugs Advisory Committee and FDA Drug Safety and Risk Management Advisory Committee hearing has occurred and voted overwhelmingly that better warnings are needed on all fluoroquinolone antibiotics to warn physicians and consumers of the potential for the severe constellation of symptoms which they are now calling “Fluoroquinolone Associated Disability” (FQAD). This is a huge victory in one sense, and one to be celebrated for everyone involved in helping to make it happen. I would never want to downplay the incredible hard work and effort and accomplishment this is. It takes an unimaginable and tremendous amount of energy it seems, to get the FDA to do anything useful, at least for the general public. So this is actually quite an accomplishment. And certainly, it’s a step in the right direction. And yet, do I really think this step alone is going to make a difference? No . . . not really.
“I keep wanting this story to end, but it never does”
PRESCRIPTION FOR DISASTER. By Stephen Fried, April 3, 1994. “ . . . Then the folks at “Good Morning America” decided to use the article for a women’s health segment on adverse drug reactions; they had Diane and me on, along with Murray Lumpkin, then director of the division of anti-infectives of the FDA’s Center for Drug Evaluation and Research. The show generated more calls and letters . . . I keep wanting this story to end, but it never does. Late last year I got a call from a producer of Oprah Winfrey’s show. She wanted to do a program on adverse drug reactions because she had just had one — to Floxin. Diane and I appeared on the program, along with several other people we had met through the original article, and since then I’ve gotten a steady stream of calls. Many of them are from people who had almost the same reaction Diane did, but weren’t as lucky to have doctors who at least recognized a drug reaction and were willing to learn what they didn’t know about how to treat it. I’ve talked to people whose spouses have lost their careers in the aftermath of drug reactions, people whose fathers attempted suicide because of depression that seemed to have been triggered by quinolones.”
Those are the words Stephen Fried wrote for his excellent article “Prescription for Disaster” for the Washington Post — in 1994. Yes, that’s right — 1994 — over twenty years ago. For anyone who thinks that the FQ ADR’s are something new, think again. It’s an old, old story, this one, which actually goes back much farther than 1994. But this article highlights how Pharma, FDA, flox victims, the ignorant and dismissive medical profession, even publicity on shows like GMA, Dateline, Donahue, and even Oprah — they were all there — it’s all happened before — way back in 1994. It’s all been completely ignored; and in fact, sales of FQ’s continued to increase and soar exponentially during the past 20 years. I, and who the hell knows how many others just like me, have been “floxed” since then. Had the FDA, Pharma, and the medical profession done their job back then, my life (and the life of many of you reading this) might have been spared. Don’t think Pharma or the FDA is just finding out about these ADR’s now. They’ve known. They’ve known for a very, very, long time. And they’ve done absolutely nothing about it. So do I really think that FQ ADR’s will end? No . . . not really.
If the pharmaceutical companies and the FDA even remotely gave a shit about the “health and safety” of the population they market to, they would put their money where their mouth is and take some of their billions in profits to study and research 1)who and why some people have these adverse reactions, 2)how to prevent these adverse reactions from happening, and 3) how to effectively treat them so as to return health and functionality to those who have been severely hit. They would also be promoting “RESPONSIBLE USE” – not widespread, nonchalant use for everything under the sun, passing this stuff out “like candy” to a disbelieving and unsuspecting public.
Sadly, they will not do this out of the “goodness of their hearts”, or because they feel any moral, ethical, or responsible reason to do so. It will only be when they are absolutely backed into a corner and FORCED to do so, just as occurred with thalidomide, DES, Vioxx, and cigarette warnings. Until then, people’s lives will continue to be utterly destroyed by the fluoroquinolone antibiotics. And until the research is done to find the commonalities or cause of why some of us are afflicted, hold your breath and hope it’s not YOU.
“I keep wanting this story to end, but it never does”
That one line says it all, whether it’s my personal flox story, or the greater flox story overall. Do I think I’m ever going to recover from this toxicity? Do I think no new victims will be coming on board daily from here on out? Do I think Pharma and the FDA will do what’s right, or do their job, or even remotely develop a sense of ethics, morals, compassion, or humanity in this endeavor? Do I think any of the medical or pharmacy associations will take a stand on this issue to help protect patients? Do I think tons of funding will be given to interested researchers, and collaboration encouraged, to do unbiased studies and publish unbiased results on their findings? Do I think this story will ever end? No . . . not really.
And yet, I hope I’m wrong. Despite the negativity of this particular writing, I hope I’m wrong. It’s always an uphill battle – but stranger things have happened. FQ’s are once again in the news, and that’s a good thing. And now, we have the internet. We no longer have to rely on scattered case reports of only the most observant, cognizant, and intrepid of physicians willing to report these adverse effects of the drug they prescribed – ie, willing to admit that they harmed, more than helped, their patient. Thousands of patients who can barely lift their head or get out of bed, and therefore were never seen, heard, or acknowledged in the past, now have a voice, and an outlet for their horrific stories and this continued atrocity, in the form of the internet. Our numbers are only going to grow, for all to see. So when you hear all the Pharma companies make their same old tired statements over and over again about how “Safety is our greatest concern, and these antibiotics have been prescribed safely for the last 20-30 years without problems” you’ll know what bullshit that is. Post Stephen Fried’s 1994 Washington Post article as proof and rebuttal that’s not the case. There is a historical record accumulating. Remember: the internet saves everything now. There will be less and less places for Pharma to hide as time goes on and the number of victims the world over continue to grow.
Greater awareness on this issue is essential, and spreading the word through the media and social media is probably the only way this is probably going to happen. Every single person that posts their story, or creates a website, or writes a book, or stands up to the FDA and Pharma; the TV News reporters who are telling the story; the physicians and pharmacists who are speaking out; the researchers who attempt to do unbiased studies of these ADR’s and publish against all odds; all are helping and contributing in their own way. Patients have a right to informed consent regarding the potential adverse effects from fluoroquinolone antibiotics, including possible life-long disabilities. Widespread public pressure through the media is the best hope to provide awareness for all and to pressure physicians to prescribe responsibly, the pharmaceutical companies to warn adequately, and the FDA to regulate appropriately. I hope that every single flox victim continues to scream their story out over the internet, so that maybe this time, I’m wrong and it will be different. I hope that all the reporters who have worked on this story in this latest push will not drop the ball, be intimidated into silence, and keep these antibiotics in the news. I hope that bigger media shows, such as the talk shows and health shows and investigative shows, will not be intimidated into silence by their (Pharma) advertisers. I hope the FDA will finally step up and do their job. I hope that Pharma with their insatiable appetite for profits at the expense of our health, can actually be held accountable and reigned in and their power diffused. I hope that medical professionals will be informed and understand how absolutely devastating the results of taking a fluoroquinolone antibiotic can be, and that they will change their prescribing habits on their own, if necessary. I hope that the “physicians” whom Pharma has hired on their behalf, will finally grow a conscience and realize it could have been them that was affected, or their child, or someone else they loved, and that continuing to support Pharma is a blatant contradiction to “First, do no harm” and the oath they took. I hope that someday, real research will reveal how to use the quinolone drugs safely in appropriate and responsible ways, and not a single additional person will have their life completely destroyed by a fluoroquinolone antibiotic. Against all odds, I hope that someday, we can say “Yes . . . really”.