Unlike many of the articles on this website, this article is specifically directed to those who are newly floxed, although veteran floxies may also relate to some of the issues discussed.
For the person that is starting to become aware, or at least suspecting, that their health issues could be the result of damage by the Fluoroquinolones (Levaquin Cipro, Avelox, Floxin, etc…), the amount of data that you can be faced with is often overwhelming, frustrating, and just downright depressing.
When trying to assimilate information about a subject that is often dismissed by the medical community and that is scattered over a broad playing field, a person can be faced with several disadvantages. Some of these disadvantages can become psychological pitfalls and if you are not careful and they, in-turn, can hamper your progress.
The first pitfall: Separating Facts from codswallop, also known as poppycock, balderdash, hog wash, and the like.
There nothing like starting out with a hard and sensitive subject. This pitfall is one of the most difficult pitfalls for many people and a subject that I could write volumes on: The sorting of facts from opinions and personal belief.
For some, this pitfall arises because of the ambiguity between real medical research and personal opinion. These opinions, which are often well-meaning, can range all over the place from the practical to the downright bizarre, and they can come from various sources, some of them seemingly quite credible. These sources encompass countless floxed ‘experts’ that you find populating online forums and groups (myself included) to doctors who, although they have the moniker of M.D. by their name, wouldn’t know a floxed person if the surgeon general himself came up and put their arm around them.
Bottom line, the task of discerning good data from bad data can be overwhelming.
If you are a data driven person, the ugly truth is, when it comes to Fluoroquinolone toxicity, there are actually very few officially documented facts. Some folks, especially those with a science background, are often shocked by the paucity of research that has been done, despite the many years that have gone by and the sheer amount of people affected. Many times these well-meaning newcomers will march off, disgusted that I and others haven’t done more, hoping to change the world, that is, until they run into the FDA, AMA, and the whole “for-profit” medical industry.
In a nutshell, there are many reasons that explain the lack of robust medical research that has gone into Fluoroquinolone toxicity, but the nitty-gritty is that the drug companies control our “for profit” medical industry through funding and data. Even now, in many medical circles, Fluoroquinolone toxicity, is much like the Bermuda Triangle or Bigfoot, completely relegated to the lunatic fringe.
Getting back to facts. There are good facts that bolster our case against the Fluoroquinolones. Much of it is spread out across a large playing field and it is not connected together and this can be a daunting task that requires hours of research. Also, of the existing Fluoroquinolone facts that are available, we do have some good facts, but conversely we also have questionable facts despite having authors with seemingly impeccable credentials.
An example of a good simple documented fact about Fluoroquinolones is that they are Topoisomerase 2 Inhibitors. Again, this is a known and documented fact. Another fact is that they are chemotherapeutic agents that exhibit anti-cancer or anti-tumor tendencies. Again, both of these facts have been documented well in research.
However, just because the research has a supposed authoritative source, doesn’t mean the facts are actually good facts. An example of a questionable fact is that Fluoroquinolones have a good safety record. Although the science that proves that Fluoroquinolones are safe is readily accepted by doctors, much of it is fraught with tacit drug company interference and author bias. These supposedly documented safety facts, are also contradicted by the lived experience of thousands of individuals who have become disabled over the last several decades and it is backed up by the FDA’s own data.
So how do I filter out truth? I look at the data (medical science, research, current medical practices) and then compare it with the truckload of anecdotal information and form my opinions. I have to admit that I am in the unique position of having access to a lot of anecdotal information. But let me say one more thing about this point.
Many, many people in the floxed community, who are mostly well-meaning, incorporate other personal opinions about the Fluoroquinolones into their personal belief system and these belief systems exist at the sub-conscious level. Again, although well meaning, these beliefs can be incorrect but because of lived experiences or other influences this erroneous data is often believed to be correct. Let me give you an example:
There is a belief that circulates around the Fluoroquinolones community that NSAIDS are bad for floxed people, despite the paucity of data that backs up the belief. While it is true that NSAIDS are contraindicated and should not be taken WHILE a person is currently taking an Fluoroquinolones, there really is no hard science to show that they cannot be taken later, after an adverse event. The truth is, some people find out they can take them with no problem, while others cannot. Still, you have die-hard individuals telling the newly floxed, “You can never take another NSAID again!” or “NSAIDS will always cause a bad reaction post floxing.” These statements are coming from a belief system, albeit an erroneous one.
On a side note, do you know what happens when you question a belief system? You usually get anger as a response. If you question a person and get anger in response, you have tapped into their belief system. Social media is fraught with belief centered confrontations, especially during the COVID-19 pandemic.
Bottom line: Always be proactive and question medical knowledge that will be applied to your personal situation, regardless of the source. It doesn’t matter if it is safe for others, the question is, is it safe for you?
The second pitfall: Putting all your eggs in one basket.
Some people may think this this website (as great as it may be), or another website dealing with Fluoroquinolone toxicity, or a certain Facebook forum, or a certain ebook sold on the internet, are great authoritative compendiums of information. So much so, that they do not have the need to look for information elsewhere. Avoid this pitfall by looking gathering data from various sources and viewing it with a critical, detached attitude. Use the all information that you can for your personal benefit by adjusting it to your own expanding awareness and your lived reality. For example, because of your own unique physiology you may get very ill taking a supplement that everyone else finds perfectly safe.
But be careful, don’t go overboard. Try to compare the data from your various sources. Do they agree with one another? Is there a general consensus?
Sometimes, basing your decisions on just one fact or piece of data may be necessary, but it is also carries more risk, and in some cases can be very dangerous.
Mark Twain once said, “Be careful about reading health books. You may die of a misprint.”
The third pitfall: Watch out for Hypochondria.
Please do not read this website, the Flox report, listen to other ‘experts’ in Facebook groups or discussion forums and start believing that you have all the symptoms of any Fluoroquinolone Toxicity. Doing this you will end up convinced that you are suffering a far worse reaction than it really is, and that will make you suffer unnecessarily.
Recently, I believed I could have some symptoms from heavy metal poisoning, which can be real concern post floxing. To gather more information, I joined a Gadolinium forum to search out some specific information on various detoxing regimens from heavy metals. Boy was that a mistake! It was like taking an adventure into an alternative parallel universe. If I had not compiled the learned experienced of over 14 years in the flox community, I would have walked away devastated. I literally saw many of people with symptoms who were in search of a cause. Hear me…. I am not saying that Gadolinium deposition disease is not real, nor am I saying that people don’t suffer greatly from it, I am just using this to make a point.
I have seen this very exact thing play out in the floxed community hundreds of times over the last decade; some floxed individuals want, at all costs, to match their reactions against data and experiences of others in order to create an instrument to rate their adverse event (AE) or symptoms. They look for a precise timetable of recovery from others, who are eager to give it out, and then try to make plans to foresee every event that is going to happen to them during their recovery. Let me let you in on a little hint…no one can do that. Predicting the future, is not its objective of this website and it should not be the objective of any other source of data either.
While it is true, I and maybe some others, can give you a general idea of what floxing is and the suffering that is caused by Fluoroquinolones, I cannot, and neither can others, evaluate your individual case and determine its outcome or course of progression.
Bottom line: There are no prophets in the Fluoroquinolone community.
There was a person, who, in one of the Facebook forums, was handing out timeline advice like candy that was based on their own personal experience. They would tell people, “your digestive issues should clear up by the 6-month mark” or “an average reaction takes about two years to complete,” etc…
If after being told this information by someone who seems well respected, you try to establish at all costs the predicted recovery date for that symptom of yours, you will surely get very anxious and depressed when your digestion is not normal by month 12.
If you attempt to use the opinions of others as a complete guide for your illness, you will become frustrated and you will lose the necessary perspective and strength to handle your intoxication from the proper perspective.
Floxing is a life altering experience that does not resemble any normal illness process that you have experienced before in your life or have come to learn about, like post-surgery recovery, healing an infection, or post-traumatic recuperation. Most likely, all health issues that you had prior to the floxing started to heal as soon as the offending agent was removed. This is not the case with quinolones. They are synthetic DNA damaging/altering chemotherapeutic agent.
The hard truth is, some floxed folks will feel progressively worse for months or maybe years before returning to a normal functional life achieved. Most people are programmed under our current medical system, that there is something that can be done such as take a prescription medication, put a Band-Aid on the wound, or perform some rehabilitation exercises. Fluoroquinolones toxicity is different.
For most nothing can be done to halt or reverse an AE from Fluoroquinolones after the end of treatment. It is very much like suffering from a chronic degenerative illness and has many overlaps with gulf war syndrome, lyme, lupus, multiple sclerosis and others.
However, if you have one or even several symptoms of a severe AE, that does NOT mean that you are destined for a severe AE, and no one can predict its outcome. It truly is the whole complete picture that counts. I have seen too many floxed persons that have mild AE’s become hypochondriacs worrying about the possibility of having a severe AE and magnifying real or imaginary symptoms to match those of a severe AE.
Tip: Never, I mean never, take healing advice or timeline advice from someone who claimed to have been healed from Fluoroquinolone Toxicity in six month or less. The overwhelming chances are, they were never floxed in the first place.
The fourth pitfall: Becoming Overzealous.
Having partially fallen into this overzealous trap myself early on in my floxing, it is another extremely common mistake to be overcome overzealous in your search for exact answers, explanations, cures, treatments, timetables and protocols for every minor symptom that shows up.
Even people considered extremely healthy have negligible physical changes or events that take place in their life that are totally ignorable. Overreaction to the Fluoroquinolone AE can cause floxies to become worried and look for Fluoroquinolones lying in wait at every corner of their lives, or extremely afraid and obsessive about potential negative influences of normal habits, like taking a shower with tap water tainted with fluoride.
At the same time, this does not mean that you should not adhere to good medical practice and have new or unusual symptoms evaluated by a competent medical professional. About eight years into my floxing I kept getting some abdominal pain in my lower right abdomen. I assumed that it was a muscle spasm, and due to my medical knowledge, I even convinced my doctor that it was muscle spasms as well. Wrong, it ended up being my gallbladder that was displaying atypical symptoms.
Bottom line: Be proactive and advocate for your health, but please do not look at your entire life through the Fluoroquinolone lens. This only adds anxiety and despair to the already intense impact of being floxed.
Above all else keep in mind that your floxing experience is unique one that centers around your physiology. Floxing experiences are novel, probably more novel than the coronavirus SARSCOV2. No person (not even me), no report, no Facebook group, no Twitter post can substitute for your own personal knowledge about your symptoms, your recovery and all your health aspects.
Our medical system today has its strengths and weaknesses. It is very good at triage and very bad at pharmaceutical interventions. No one wants to go through the terrible experience of floxing, as floxing represents the darker side of our medical system. Most floxies end up here through no fault of their own. Instead, they trusted the advice of someone who was suppose to be an expert.
If you are new to this plight, do yourself a favor, first be kind to yourself, and the try not to fall into these four psychological pitfalls.
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Thanks for the insightful article. I have to admit that I found myself quickly becoming a hypochondriac after I got floxed in 2018. It is real easy to do. Although I still suffer from problems I had to learn to worry less.
Thank you very much for all your hard work and YT videos. Appreciate your balanced approach. Use iHerb for my supplements and will certainly gladly use your code.
I got flexed in hospital for surgical drainage of sinus infection . I was given the antibiotic with a bento. Thrown into acute bento withdrawal, but had protracted symptoms. Achilles pain and tendonitis appeared in hands 6-7 months after med. With help of this site and some news broadcasts on YT, realized it was the fluoroquinolone giving the symptoms.
Your site has been a definite reference, 15 months out, have more good days than before, but certainly daily reminders like sever bouts of vertigo. Like everyone else, coping as best I can. Waves/windows part of life now. Thank for giving reassurance that this is “normal” for our experiences.
My friend (45, male) was floxed and now uses a wheelchair and on 100% disability. Is this a degenerative condition? Or has the damage been done and it is what it is?