Here is a list of things I want. I figure that it can’t hurt to state my wishes. People generally try to give you what you want, if you ask for it. So…. hereyago –
- I want them (the doctors, pharmacists, etc.) to stop giving fluoroquinolones to children.
- I want for fluoroquinolones to only be prescribed/administered after all other viable options for cures of infections have been exhausted.
- I want the FDA to do independent investigations and studies on every one of the top 10 drugs that are complained about in their adverse event reporting system.
- I want there to be a process through which accurate and complete information about all of the possible risks associated with a drug are communicated to patients in a way that ensures that true, honest INFORMED CONSENT is given prior to the administering of any prescription drug.
- I want pharmacists to truly be gatekeepers and to refuse to fill prescriptions that are unnecessarily dangerous.
- I want doctors to listen to people other than other doctors.
- I want nurses to speak up when they see something in the system that is wrong.
- I want all Floxies, and Floxie friends and allies, to rise up and fight these pharmaceutical companies that have hurt us, who have disregarded our worth as humans so that they can have profits, and I want us to bring them down to their knees, to force them to change.
- I want everyone who is suffering from an adverse reaction to a fluoroquinolone to find healing, peace, hope and happiness.
- I want a cure.
- I want to know what makes some people more susceptible to being floxed than others.
- I want floxing to be acknowledged – by everyone.
- I want for the attitude of – if it can’t be tested for, and if there isn’t a cure, then the problem doesn’t exist – to go away.
- I want all of the victims of fluoroquinolone toxicity to win lawsuits against Bayer and Johnson & Johnson and for all of us to be compensated for the damage that they have caused us.
- I want studies to be done establishing whether or not there is a connection between fluoroquinolone use and fibromyalgia, chronic lyme disease, chronic fatigue syndrome / Myalgic Encephalomyelitis, Desert War Syndrome, anxiety, depression, suicide, plantar fascitis, autism, leaky gut syndrome, rheumatoid arthritis, M.S., Lupus, carpal tunnel syndrome, etc. Then, once a connection is established, I want a study to be done that firmly establishes a causal relationship between fluoroquinolone use and fluoroquinolone toxicity (in all its various incarnations and misdiagnoses) to be done.
- I want the stock of Bayer and Johnson & Johnson to crash.
- I want this anger that I feel to serve a purpose for both me personally and for humanity generally.
- I want an article in The New Yorker to be written about fluoroquinolone toxicity.
- I want to do a TED talk about floxing.
- I want to make a living advocating on behalf of victims of the pharmaceutical industry.
- I want the pharmaceutical industry to have a lot fewer victims – zeroish.
- I want an apology letter from Bayer.
- I want to know the pathology by which these drugs messed me (and others) up.
- I want pharmaceutical companies to have a lot less power.
- I want people to take side-effects of all drugs seriously.
- I want everyone to treat everyone else with compassion, caring, respect and love. I want everyone to treat everyone else as if their health matters – because it does. I especially want doctors, nurses and pharmacists to treat everyone that they see as if they matter – because they do – regardless of their disease, their mental state, their hygiene, etc.
- I want there to be a societal shift away from thinking that it’s okay for people to be sacrificed in exchange for money.
- I want universal sympathy for those who are suffering.
- I want this blog to go viral.
- I want my mind fully back – my memory, my reading comprehension, my concentration, my ability to connect with others – I want it to be back completely.
- I want a boyfriend/husband, good sex and a baby – in approximately that order.
- I want a fully loaded, brand new Tesla.
Okay, so those last four may be a bit selfish. Seeing as I’m able to live a normal/good life, while other people who have been Floxed are bed-ridden for years and only want a normal/good life, I feel a little bad about asking for those things. But I do want them… 🙂
Great list! I’m right there with you. It broke my heart to have an acquaintance/friend be prescribed Cipro, and when i tried to tell her how dangerous it was, see that look of distain come across her face because “the doctor” prescribed it. Sigh. We’ve a long way to go.
I want my doctor (a very compassionate woman) to stop saying that it is very rare to be floxed. I want her to be upset with the drug companies.
Wonderful!!!! Mary from Ireland
I want the drug companies that profitted from these drugs and fought the “black box warning”, to have to put every dime of their profit into research to reverse the damage
and help the ones who have been damaged.
Hello,
I just want to say that, while I don’t profess to have all the answers, I do strongly believe that there exists a major correlation between adverse reactions to fluoroquinolone antibiotics and Lyme disease. It is imperative for all “floxed” people to extensively seek testing for Lyme and its co-infections by a LLMD – that is, a Lyme literate doctor.
Statistics show that tens of thousands of people each year go undiagnosed or misdiagnosed as they continue to suffer from some form of Lyme disease and/or its co-infections. Until this year, you could count me as one of those people.
This past March, I had an acute reaction to Ciprofloxacin after having taken it for about two weeks. Upon being cross-examined in the ER, I was diagnosed by one doctor as having had an episode of toxic psychosis wrought by the medication. I was assured that the effects I were experiencing were transient, and was sent on my way. My condition persisted, and as weeks went by with little to no improvement, I opted for a brain scan (which was reluctantly ordered by a neurologist and came up negative), and later saw an ophthalmologist to address my new onset of eye floaters, who diagnosed me with a vitreous detachment. He also added his own opinion, which was that the Cipro had caused a shift in my metabolism, which, in turn, caused the vitreous detachment. I had more answers, but still suffered with many symptoms.
Several weeks later, I scheduled an appointment with a doctor of internal medicine, upon reading success stories from folks online who claimed that they were “floxed” and had seen significant and/or full recoveries from various forms of alternative therapies. My first impression of my doctor was that of instantaneous trust and a sense of optimism about making a recovery; her roots as an osteopathic MD seemed tailor fit for the specificity and complexity of my unique set of symptoms. What didn’t occur to me, however, was that she also specialized in tick-borne illnesses. After running down an extensive list of symptoms and giving her a thorough run-down of my “pre-flox” medical history (depression, anxiety, ODC, etc.), she immediately ordered several blood tests for Lyme and its co-infections. Two weeks later, lo and behold: I tested positive for Lyme disease (Western Blot) and its co-infection, Babesiosis – a malaria-like bacteria that infects and depletes red blood cells.
So why was I completely asymptomatic before Cipro? Lyme and its co-infections can often lie dormant and continue to be suppressed by a young and healthy immune system (such as mine) for many years, while its presence manifests itself in subtle but insidious ways. What I thought was clinical depression and generalized anxiety disorder throughout most of my high school years, for example, was most likely an early manifestation of the babesia microti parasites attacking my blood cells on their outer wall. That the “uncaging” of my otherwise dormant Lyme and Babesia was initiated by Cipro provides substantial evidence for the much-discussed phenomenon within Lyme-centric medical circles known as the Jarisch-Herxheimer Reaction – “herxing” for short. Essentially, “herxing” is what occurs when antibiotic treatment kills spirochete bacteria emitted by Lyme, and then creates die-off, which is toxic in and of itself and poisons the tissues until fully removed from the body by way of detoxification. Because Cipro, by its very design, is not suited to treat Lyme disease and its co-infections, what happened in my body can be understood as a malfunctioning of treatment; the Cipro tried its best to kill off the bacterial infection, but instead inflamed my pre-existing condition. When my doctor told me “Usually when this happens you wind up on your butt and can hardly move for about a week,” I was astounded. With that sentence, she had summarized the entire experience that led me to her office before I had the chance to explain it myself.
Since my diagnosis, I have not been “cured.” Many symptoms persist. Currently, I am treating the condition with a combination of an herbal anti-microbial protocol; doxycycline; and have just added hyperbaric oxygen chamber dives to my regiment with considerably positive results. The battle against Lyme takes place on an arduous and unpredictable road, especially with a co-infection such as Babesia, and the diseases’ formidability cannot be understated.
But I am posting here because, having been where many of you are…Having felt the immense horror that comes with Googling “cipro side effects” and “fluoroquinolone toxicity”…Having done enough research to appear as a panelist at a public awareness forum to discuss slews of controversial and/or mysterious medical issues… I do not consider myself “a floxie.” The legitimacy of the word “floxie” as a label, in my opinion, is tenuous at best. I am a person battling Lyme disease, who happens to have found out I had it because of an unfortunate experience with Cipro. There *IS* a correlation between the use of potent antibiotics and the elusive nature of Lyme. In the case of fluoroquinolones, causation does not necessarily imply culpability.
Again, I share my story and my findings because it is my great hope that many “floxed” persons seek extensive testing for Lyme disease and its co-infections. People who claim to be suffering long-term effects of fluoroquinolone toxicity are certainly justified in their anger and confusion, but a great many of them may be doing themselves a disservice by not treating a persistent infection that is capable of invading many vital organs of the body.
So please, seek out a local Lyme literate doctor and get tested ASAP. You could find your worst enemy has been right under your nose, and that it took the nasty help of a fluoroquinolone to realize it. If even one person goes out and gets tested after having read this, I’ll feel I’ve done some good. And, hey, even if your labs come back negative and you’re left with FQ-induced symptoms with nothing to blame but the FQs themselves, by that point, you’ll be in touch with a doctor who’s well-versed in alternative therapies that could very well lead you on the road to recovery.
Thanks.
I think a more accurate assessment is that being floxed is a HUGE hit to your constitution and the immune system – a) by hindering the energy making mechanisms which are needed for the body to do anything and everything and b) by wiping out beneficial gut flora, and releasing toxins from die off. . and c) who knows what else . . . . but to say floxing does not exist is a complete wrong turn. Being floxed will, I think, make you more susceptible to opportunistic infections like lyme, babesia, bartonella (I have all 3) and I was floxed about 2 years before developing the 3 b’s after two bites – I suspect the floxing made me more susceptible to lyme etc but it did not cause it. . .I was bitten after I was floxed. Many lymies think everything is lyme and many floxies think everything is FQ toxicity. Be careful to not let your own personal filter (ego) make blanket generalizations.
Lisa,
Thanks for your kind words. You and your site are a beacon of sanity and much-needed forward-thinking in a sea of abysmal moaning and self-pity from so many people who are content to label themselves as victims and throw in the towel. Perhaps my refusal to acknowledge my floxing in spite of my willingness to accept my Lyme can be accounted for by the fact that those living with Lyme disease don’t exhibit the same pathetic levels of despair and defeat I see coming from most floxies online. (Trust me when I say that [after much obsessive web-surfing for information and feedback on both FQs and Lyme] this is not a sweeping generalization).
Having said that, I do agree that it’s important not to ignore the compromising affects that FQs, as Tee so rightly points out, have on one’s constitution and immune system. That’s why I made the point from the outset of my initial post that I do not, by any means, claim to have all the answers. I can only offer my assertions based on evidence, and hope to learn from those who share similar experiences and who work toward a full recovery, rather than chalk up every ailment they ever had to the evils of Bayer. I do support the vigilance of those affected who seek justice and are hell-bent on raising awareness, and I agree that Bayer (and the other pharmaceutical companies manufacturing and distributing FQs) should absolutely have taken this poison off the market a long time ago. Accountability is also sorely lacking and needs to be restored amongst these companies, most likely through legal means.
But my God, if FQs have initiated a nightmare for many, unsuspecting sufferers of their toxic effects have made it a million times worse for themselves and those in the same boat with their incessant wailing! Not a day goes by that I don’t think about the day I had my acute reaction, but you know what? It happened. In spite of not being able to string sentences together properly half the time; being short of breath out of nowhere; forgetting what I was just about to say five seconds after it enters my brain; having floaters in my eyes constantly; combatting bouts of depression and anxiety and feelings of isolation; and countless other current symptoms, I still edit a magazine. I’m still going to start my graduate studies at the school of my dreams this September. Yes, I’m attending part-time now, and have to prioritize in order that I manage my illness, instead of going full-time and gunning for a spot at any of the several companies and/or outlets I want to eventually work for at the beginning stages of my career. But I’m not stopping. I’m not deferring enrollment. I’m not giving up on my dreams. I will never, ever be one of the many voices who lament about how “Everything was perfect until Cipro!” I will be a success story. I owe it not only to myself, but to those who will one day end up in the same boat as I did and are desperately searching for hope, answers and advice. This too shall pass.
Now, on to greener pastures. Tee, I’m sorry you’ve had to endure the same realm of pain and confusion I have, in terms of having had an FQ reaction *and* Lyme. If I may ask, how has your progress and prognosis been since then? Have you undergone any treatments that helped particularly well? My most frustrating symptoms are those related to my brain – that is, my speech/word finding difficulties, lack of mental clarity and overall typical “quickness”. The physical stuff sucks too, but I have a much easier time coping with it. Any good for me?
Again, thanks for your time and I wish you all the best.
Hi Max and Tee:
I know you’re not doctors, but, as folks experienced with both antibiotic sensitivity and Lyme, I have a question for you about your ability to distinguish between Lyme and ‘floxing’ symptoms. (And Max, I suspect I am an example of your thesis about exposure of underlying Lyme after antibiotic stress.)
I’m a (now former) trail runner who has been diagnosed by different MD’s with both Lyme disease and an acute sensitivity to antibiotics. My symptoms started last summer after years of trail running in the woods around New York City. After two rounds of Levaquine last year I started to experience constant mild gut distention and weight loss and occasional vision blurs. After a course of Flagyl this fall I ended up with anxiety-induced sleeplessness, heart tics, anxiety attacks out of nowhere, vision problems of various types, eye and skin tremors, limb numbness and tingling, and tinnitus.
One set of docs believes that my symptoms indicate Lyme disease and that I must go on doxycycline immediately. This is supported by some positive Elisa tests as well as 3 bands on a Western blot and 4 on a Western blot from IGenex labs in CA. The Lyme thesis may be supported that after 3 weeks or so on the Cowden herbal protocol I have started to be able to sleep a bit better. I also have certainly had a lot of exposure to tick-laden areas and have found deer ticks on or near me in the past (though no bites that I know of).
Another set of docs believes that the symptoms are from antibiotics intolerance, and that I should avoid antibiotics at all costs. This point of view is supported by the fact that when I tried just one dose of doxycycline, I experienced (within an hour or so) pins and needles in my hands and feet, crazy stomach activity, and some balance problems that had started to fade (I would best describe this as feeling as though I’m walking on a carpet of water, but, I’m sure everyone has their own description!) It’s also true that I have not had the fatigue often typical of Lyme, nor the distinctive fever or rashes.
So, my questions are two:
1. DId you find that certain symptoms were more indicative of one than the other? Tee, you may be able to answer this more easily, since your experiences were in different periods. For example, is the balance stuff more about floxing than Lyme? And, some of the neuro symptoms (eye flashes, headaches, etc.) more about Lyme than floxing? It may be tough to generalize, and I’m sure everyone is different, but, I’d love any perspective you could offer.
2. DId doxycycline have any notable effect for you – either negatively, or, positively? Lisa (who has done an amazing job in setting up this forum) suggests that most people with FLQ sensitivity do okay with doxycycline. Again, I realize every experience is different (as is every case of Lyme), but, I’d appreciate any experiences you have had that you might think worth sharing.
In the meantime, I’ll be carrying on with the herbs, and waiting for time to go by.
Speaking of which, thanks for your time! best, Chris
Hi Chris,
Sorry to hear about your predicament! I’m the Floxie/Lymie friend mentioned in the above post who was treated with the Marshall Protocol. Before my experience with the Marshall Protocol, I was treated with a long term antibiotic therapy pioneered by infectious disease physician Dr. Samuel Donta.
“Dr. Donta is principle investigator in the study, “Tetracycline Therapy for Chronic Lyme Disease” (Clinical Infectious Disease, 1997;25 (suppl 1):S52-6). That study found in an evaluation of two hundred and seventy-seven patients with chronic LD, a 3-6 month course of tetracycline treatment is associated with cure or significant improvement in 80-90% of patients…”
If you’re interested in more information on Donta’s therapy, the full paper can be accessed here: http://www.ncbi.nlm.nih.gov/pubmed/9233665
After receiving his tetracycline therapy for fourteen months, which began sometime back in 2008, my condition improved substantially, but I felt that my recovery had reached a plateau. I had been researching the Marshall Protocol for some time, and I was very eager to try it based on the science and testimonials from people I was corresponding with who were experiencing resolution of their chronic symtpoms.
At the time, part of the protocol advised low dose, pulsed bacteriostatic antibiotics, but that has since been de-emphasized. The focus of the treatment revolves around the off-label use of Olmesartan, an Angiotensin-II receptor antagonist, normally used as a hypotensive agent.
“Studies have shown that the MP’s bacteriostatic antibiotics – all but one of the MP antibiotics are bacteriostatic – are effective when given in pulsed low doses. Several studies have shown that even when administered in low, pulsed doses, the bacteriostatic antibiotics are still able to decrease the production of bacterial exoproteins”
I experienced what I would call a full recovery after being treated for over a year with the Marshall Protocol. I was virtually symptom free until my Fluoroquinolone experience a few months ago. I no longer test positive for Borrelia proteins by Western Blot diagnostic, however, I still experienced a severe adverse reaction to a fluoroquinolone. It’s possible that my reaction is related in some way to my history with Lyme, but I would exercise skepticism over the notion that most FQ toxicity cases are actually misdiagnosed Lyme. I understand the intuition behind making such an association, as the symptom complexes are very similar.
I can’t comment with regard to Doxycycline, as I’ve never taken it. I have taken Tetracycline, of which Doxycycline falls into the same class, but this was long before I had my adverse reaction to an FQ, so I don’t have any first hand anecdotal evidence to indicate a correlation. If you google “Doxycycline loss of balance”, there are some reports of this.
I’d be happy to answer any questions questions you might have about treatments. I’ll ask Lisa to send you my email address! Best of luck in your recovery. I can assure you, it gets better! Don’t lose hope.
Thanks Lisa for getting in touch with Robert, and, thanks Robert for your reply above! Sorry for the slow reply, as I think I may have mis-entered my email in my post. I will enter it correctly below, and, LIsa, feel free to pass it on to Robert.
Robert, thanks for your interesting thoughts about Lyme and I’m sorry to hear about your subsequent flox.
I’m most curious about the similarity of the symptom complexes you mentioned. As I described, with conflicting diagnoses going around, and what seems to be a lot more awareness of Lyme than of adverse antibiotic reactions in my area (which is New York, where of course Lyme is endemic), I’m just trying to understand whether an antibiotics course is worth the risk. Without the CDC-positive Western blot, I hesitate to attack my system as though it were Lyme.
Understanding that there are large differences between individuals’ reactions, are there any general differences you’ve noticed between your two experiences – generally neurological vs. generally other symptoms, etc.? Or, do you feel like you’re seeing the same movie again – ?
Feel free to comment here, or, reach out as you see fit – thanks for your help!
I am following this with interest, i think both Floxing and Lyme are very real independently but i also think there is an overlap in some people, for this reason i will be pursuing a Lyme diagnosis via tests and may use herbal remedies to see if there is any improvement in my condition post Cipro.
I think it would be prudent for all Floxies to persue the Lyme route and attempt to rule it out, either via blood test (not 100%) or via some mild treatment to look for improvement, avoiding conventional antibiotics if possible. I read somewhere that a physician actually uses a mild but effective chinese herbal remedy as a test, if you improved or reacted then you are very likely Lyme infected, based on the blood tests being so unreliable.
This is a great and beautiful post Lisa. I share all your wishes, except for the husband and child. I have them already ;).
I wish sincerely I could find us a cure.
I wish Pharma could be forced to put all their excessive gains in finding us a cure ( research done by an independent research team. We just want their money for research and compensation for the harm being done to so many of us)
I wish I would heal, so I could put more effort in finding us a cure.
I not only wish to find us a cure, but also wish for recognition that should come with finding a cure and healing from the toxicity.
I want to force Pharma to use and develop and sell saver antibiotics than fluoroquinolones.
I wish they would stop giving these antibiotics to animals.
I wish bio industry would stop. As well as pollution of our world.
I wish the world was more of a loving place instead of a place to gain as much money as possible.
Unfortunately I am only getting worse instead of better. Si I can’t put as much effort as I would like in spreading the word, read and find us a cure.
I hope one day, sometime, we will be celebrating all of my and your wishes that came through her on Floxie Hope..Lisa
Thanks for writing!