We all have Bruce to thank for this awesome list of suggestions and recommendations! I was lucky enough to find him on a floroquinolone board.
For additional suggestions, you can read my post:
The following are general recommendations specific to adverse reactions to fluoroquinolones aka "floxing".
* Most people who do not have kidney problems benefit from a magnesium supplement of 250 mg - 400 mg or so a day. Be aware magnesium like many metals becomes toxic at a relatively low multiple above its Recommended Daily Allowance. Many people take a little more, but that isn't the official recommendation of this list.
* Supplements for Vitamins B and D are also supported on this list.
* Probiotics such as Align Digestive Care Probiotic are valuable to prevent Clostridium Difficile overgrowth.
* Many people try many other supplements and don't let this stop you, but there have been people whose excesses ended in hospital visits or made their situation worse. So do be careful.
* Most people can eat just about anything after a few cycles / months.
* The safest foods to eat are beef, organic eggs, wild caught fish, organic chicken (except from Whole Foods).
* The least safe foods are foreign sourced meats, farmed fish, and bottom feeders like shrimp and muscles.
* Caffeine and coffee triggers anxiety, insomnia, and panic attacks for those who have such symptoms which includes a fair percentage of the victims on this list.
* Alcohol exacerbates peripheral nerve pain, if present.
* In some victims, sugar in large amounts (e.g. a large soda or dessert) can trigger nerve symptoms like insomnia and neuropathic pain. Depending on an individual's age and digestive system, large amounts of sugar or certain types of sugar potentially feed any bad bacteria in the digestive track.
* In a small minority of victims, Soy can trigger days of worsening symptoms, but we have no data on whether those people have medically detectable allergies to soy. Soy lecithin is used in the fabrication of many supplements and pills. The only person we know who took a blood test for soy allergy, which came back negative, did not have flare ups from soy.
* Steroids like Cortisol, Cortisone, Prednisone in all forms (creams, pills, injections) trigger multi-month relapses that may be worse than the original symptoms. I'm not a doctor and can't tell you what to do, but I can tell you that I write a special note on my doctor forms "adverse reaction to steroids" near the allergy section. This adverse reaction applies for a minimum of 5-10 years post floxing.
* Having had an adverse reaction to fluoroquinolones, you should not take them again for the rest of your life as the medication insert states. Your next exposure will always be much worse than your last. I'm not a doctor and can't tell you what to do, but I can tell you that I write a special note on my doctor forms "adverse reaction - fluoroquinolones" near the allergy section.
* Illnesses including colds and flu will trigger relapses that last weeks.
* Emotions of anger, stress, fear, and hatred along with sleep deprivation will make your symptoms worse. The correlation of these with cortisol release has not gone unnoticed.
* Emotions of love, laughter, relaxation, and a sense of humor tend to diminish symptoms.
Doctor Types to See:
* The multitude of body systems affected creates a need to see many doctors who won't have a complete picture of how your problems fit together, but we have these recommendations.
* For tendinitis and joint pain, see either a "Physical Medicine and Rehabilitation" doctor (also known as a Physiatrist) or a Sports Medicine doctor and also see a Rheumatologist. Orthopedists are of no value and usually deny these symptoms have a chemical cause even if the physical therapist to whom they write a referral has seen it two dozen times.
* For nerve problems, pain under the skin, anxiety, insomnia, or depression see a neurologist. Names of Peripheral Neurologists can be found at the Neuropathy Association site under Neurologists or PN Centers.
* For reduced or increased appetite and body temperature changes, see an endocrinologist who can order the full range of hormone tests.
* For eye problems with focusing, seeing stars, seeing floaters, etc. see an ophthalmologist, not an optometrist.
* Pain management doctors are of no value.
* It helps to see a doctor who has a background in pharmacology; only 47% of medical school programs offer pharmacology training.
Typical recommended tests are:
* comprehensive metabolic panel
* liver function
* kidney function
* vitamin D
* vitamin B
* serum magnesium
* c-reactive protein
* thyroid including TSH, T3, and T4
* total testosterone in men
* free testosterone in men
* MRI of joints can't walk on, if doctor agrees and is affordable (MRIs tend not to show much unless the joint pain is quite severe)
Your doctor may also want to rule out Rheumatoid Arthritis, Lyme disease, Lupus, Sjorgren's Syndrome, Multiple Sclerosis, and Fibromyalgia depending on your symptoms. For neuropathy, EMG and Nerve Conduction tests that measure muscle control nerves may be abnormal in severe cases; skin punch biopsy to look for demylenation of the nerves and damage to small nerve fibers is the most reliable test, particularly if experiencing feelings of diffuse pain or heat or cold.
Common Medical Situation Guidelines:
* Eye Exams: Eye exam dilating eye drops have not been a problem.
* Dental Anesthesia: For local anesthesia, Lidocaine with or without epinephrine is reported as okay; be aware the epinephrine may cause a racing heart and some anxiety as a regular side effect. Despite popularity in Europe, Articaine has been known to cause permanent injury even in non-FQ users and should be avoided. For general anesthesia, Nitrous Oxide Laughing Gas or the combination of Versed + Valium or Versed + Propfol are reported as okay. The American Academy of Neurology recommends against Laughing Gas if you have peripheral neuropathy.
* MRI: If you have an MRI that will use contrast dye, request a Creatinine blood test to check kidney function, and tell the MRI center the result. Contrast dye has no reported problems for FQ victims, though there are people in the world with permanent injuries from some dyes. NSAID use, antibiotic use, most drugs, dehydration, taking supplements, and recent exercise all increase injury risk by increasing kidney workload while the dye is in the body. Those concerned with safety can either refuse dye, or can call ahead to MRI centers, ask the power of the MRI (either "1.5T" or "3T"), ask the dyes available, and make special requests. The dye "Multihance" is safest at 1.5T because it can used at 1/2 dose if requested. The dye "Prohance" at 1/2 dose is safest at 3T, and has no reported permanent side effects. The dye Eovist is good for patients with elevated Creatinine to 1.9. Contrast Dye used for CT scan causes temporary reductio n in renal function, so MRI with contrast dye should not closely follow CT scan with contrast dye.
Pain Relief and Symptom Coping Strategies:
* Oral anti-inflammatory medications like Ibuprofen, Motrin, Advil, Naproxem, Aleve, and Celebrex rarely help for those who have tried them and are associated with worsening of central nervous sytem and peripheral neuropathy symptoms. They are best avoided for several months or years when their effectiveness will return. Dozens of biopsies show tendinopathy, though it may last many months, loses its inflammatory components within the first few weeks though.
* For tendinitis and muscle pain (myalgia), pain relief has been reported with: the topical NSAID prescription Voltaren Gel (should only be used first few weeks on any given tendon); ice massage; Tylenol (which shouldn't be taken with alcohol); and to a minor extent transdermal magnesium oil.
* For nerve pains, Gabapentin and Lyrica have been tried successfully, but there are side effects to those medications. The SSRI Cymbalta works very well for some but is terrible for others, and withdrawal is harsh. Pain medications should be started at the lowest dose then increased as necessary while watching for bad reactions.
* Many people with varied symptoms find mild short term pain relief from warm baths, enhanced by Epsom salt.
* For general pain, Tramadol has very positive reviews and Morphine has been tried successfully.
* For depression, SSRI's Lexapro and Celexa and SNRI Cymbalta have been tried successfully sometimes with simultaneous reduction of nerve pain, but Prozac and Zoloft make any nerve pain worse. As an OTC, transdermal magnesium oil has minor anecdotal support.
* Most gastrointestinal problems fall under the condition of "antibiotic associated diarrhea" which is caused by overgrowth of bad bacteria. Short term success has been reported with: bananas to control diarrhea; Pepto Bismol. Long term success has been reported with: the antibiotic Rifaximin; probiotics supplements containing multiple bacterial strains such as Align Probiotic; and replacing entire meals with probiotic containing foods. Probiotic containing foods include yogurt with live cultures and Kefir (a yogurt drink found in health food stores). A special restriction regarding probiotic foods is that they should not contain inulin, maltitol, or any other sources of dietary fiber, any sugar alcohols, or any artificial sweeteners. Regarding gastrointestinal symptoms, removing sugars from the diet for a few weeks is sometimes necessary. At present, research indicates yeasts are always present in the digestive tract and moderately increased yeast presence af ter antibiotics is a side effect of antibiotic associated diarrhea, not the cause of it. Need to take an anti-fungal drug like Nystatin is rare.
* For insomnia, success has been reported with Benadryl (which should only be used in short term) and Zoloft.
Dry eye can be treated by: inserting a drop of preservative free eye drops hourly, washing Meibomian glands upon waking, holding a hot wet towel against the eyes for 3 minutes to stimulate Meibomian glands, or having tear ducts plugged (with temporary plugs) by an ophthalmologist.
* This is a deliberately abridged summary of success reported, and the best solutions may still be waiting for your discovery.
* Pain medications should be started at the lowest standard dose, then increased to the expected dose while watching for adverse reactions.
There is no known cure, only time.
"Revised: Mar. 2011"