More than likely this is a very trying time and highly emotional time for you. The amount of information on (Fluoroquinolone) FQ toxicity is overwhelming once you start digging through it, so please use caution.
Keep a few things in mind.
First, statistically your chances of a functional recovery are pretty good, especially if you are young.
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Second, when reading through forums and Facebook groups you will encounter a lot of perceived negativity. The reason for this is that people do feel horrible, both physically and emotionally, and they come online and express their feelings. They need a place to outlet their frustration and to find others who are going through the same thing. People need safe places to vent frustration and discuss their physical and emotional problems. Because of this you will find various people in various emotional and physical stages, do not apply this to you.
Third, and possibly the most important, it is very, very, very important to note that what works for one person, can be an absolute disaster for someone else. This has been exampled in our community time and time again. Do not go out and buy a boatload of supplements (unless you are under the care of a qualified practitioner) and start mega dosing things that you hear are helping others. Desperation drives people to throw common sense out the window. If you do intend on trying something, research, research, research. Please.
Fourth, be kind to yourself. I know that you are desperate. Do not starting reading things such as the ‘flox report’, which can scare the ‘Holy Living Crap’ out of some new folks. Although the book has some good technical and symptomatology data listed in it, it is also becoming quite outdated and thus inaccurate some areas.
Fifth, absolute uncertainty is one of the hardest things created by FQ toxicity. This will be just as much a psychological battle as a physical battle. FQ adverse events are often based on your uniqueness as a human being (strengths and weaknesses). Despite what you read or hear, there are no set patterns or time lines. Anyone that tells you that there are, are full of the proverbial ‘horse hockey’. Symptoms can be similar, but in all reality, no two adverse events are exactly alike nor do they have the same time-lines. Too many times I have heard people say “you will be over that by six month”s or “that will go away soon”. It is human nature for us to want to extrapolate someone else’s time-line or symptoms onto ourselves, DO NOT DO THIS! This is terribly unfair to you and can cause undue pain and hardship. And for gosh sakes, do not accept recovery advice from someone who has been at this only six months!
Sixth, there are plenty of places online to find like minded individuals who will help you share your burdens, but again you will encounter people in varying stages of severity.
Seventh, despite research and admissions from the FDA, expect denial from many medical professionals. Its frustrating to say the least.
Eighth, there are no doctors, consultants, or bloggers who can ‘cure’ FQ toxicity. Zero, zilch, nada. If they say they can, they are trying to sell you something and it is usually very expensive. Again, THEY ARE TRYING TO SELL YOU SOMETHING EXPENSIVE. There is no secret cure being safeguarded by a monk on a mountaintop in Tibet, or by a chiropractor practicing genetics, or by a self-proclaimed MD guru in California. FQ toxicity is a systemic multi-faceted dilemma that is best treated symptomatically and by providing the necessary healthy support for your body to heal. However, just because there are no experts on FQ Toxicity does not mean that you should not have serious health symptoms checked out and it doesn’t mean you won’t heal.
Ninth, unless you are over two years (an arbitrary point) or maybe longer in your struggle, never say never, and even then things can change drastically for the better or worse. Many people contact me who have been impacted less than six months and believe they are crippled for life. Floxing is fluid, changing, and dynamic.
Tenth, If you are reading this then you obviously found your way to my website. My website can be scary to newly floxed individuals. The reason for this is because this site caters to those who are chronically floxed. Many of the individuals are ‘lifers’ or those who have been dealing with this for a long time. Yes, there are thing you can learn while traversing these pages but please keep this in mind.
Finally, for those new to this plight, be prepared to face challenges and losses, including friends, family, career, and even dreams. Despite it all, remember that no matter what, you are important and your perspective on the world is so valuable. We are pioneers on a journey we didn’t choose. Take the advice of a counselor who deals with chronic and complex illnesses: “Go where the current takes you.” If needed, find a counselor who understands your situation, as friends and family may not have the practical skills or emotional ability to provide adequate support.
Please read My Quin Story’s What Helps page. It is chocked full of information gleaned from the floxie community. The data is free of charge 🙂
Thank you very much for this very helpful informative website.
I need help. I had AKATHISIA for two years then given Ciprofloxacin by mistake.
My insides are exploding. Brain doesn’t work.
Food doesn’t get in. Lost 50 pounds in bed or sat rocking.
Ice soles
No longer can eat. Chewing too hard.
Weak. All bones. Vision half gone
So I’ll. Cipro on Aka. And third time. On Valium etc.
I don’t think I’ll last the year. Barely stand.
Left on own