Fluoroquinolone toxicity diagnosis and treatment.

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Miriam in an older now closed discussion you said " In the US the FDA have already acknowledged that fluorquinolone toxicity is a diagnosable syndrome and we hope that the EMA (European Medicines Agency - who our MHRA report to) will soon make the same decision"

How are they diagnosed and what tests are made and is there a range of treatments from them.

Neurologists and other consultants I've seen accept that we may be affected but offer no tests or possible treatments. One neurologist even suggested despite negative genetic testing that I had CMT from my claw toes and my walking difficulties.

New thought does the toxiciy cause any dental problems ??

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  • Posted

    The toxicity DOES cause dental problems, many sufferers have found this. Fluoroquinlones (FQs) particularly like collagen and we have around 16 different types of it all around our body. Bone, muscles, tendons, connective tissue, nerve sheaths, artery and vein walls, skin, eyes, teeth - you name it. I've seen people report teeth crumbling for no apparent reason wheras prior to floxing they had no problems.

    Your other question about diagnosis is a tricky one. The FDA have given fluoroquinolone toxicity an official name (FluoroQuinolone Associated Disability or FQAD) which means a doctor can now write this down as the diagnosis. How a doctor reaches this diagnosis is not clear. You would think that a reasonably healthy person who is given a FQ then shortly after complains of the typical side effects on the packet leaflet would be easily diagnosed with FQAD - but not so, apparently! Sufferers in the uS say it's still very difficult to get a diagnosis.

    Meanwhile, the EMA said they couldn't say it was a diagnosable syndrome as there were too many variables. Some people will get a doctor who will write Ciprofloxacin toxicity (or fluoroquinolone toxicity) on their notes but most doctors won't commit themselves. mainly because the EMA said it's "very rare" so doctors never expect to see a case of it.

    As we know, it's not at all "very rare" - but very few doctors will accept this is what someone has got as they never expect to see a case of it!

    There is not any kind of test yet although I understand there may be some research done next year to try and find a bio-marker. There is no recognised treatment either - which makes me wonder why doctors are so gung-ho about prescribing it. Since it might well ruin your life (as in your case in fact) you'd think the least they can do is warn you.

    The only treatment so far seems to be rest, antioxidants and multi-mineral supplements. Search these forums (or further afield) for information about healing your mitochondria. These are the batteries for every cell and it's these that are most affected. CMT is a hereditary (i.e. primary) mitochondrial dysfunction. FQ toxicity causes a secondary mitochondrial dysfunction. The results are the same - your mitochondria don't function well so the signs and symptoms look the same. FQ toxicity has also been compared to MS, CFS, Fibromyalgia and more.

    • Posted

      I had a life saving operation to replace my aortic valve and was given my first of three Fluoroquinolone/Cipro courses as I had prostatitis and they could not get a catheter in.

      I limped out with tendonitis eight days later.

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