What Helps

Contributed by floxies for floxies. Thanks to Bruce M for contributing to this synopsis.  A special thanks to all the floxies who contributed data that was used in the compiling of this information. Please read the disclaimer regarding any information provided on this site.  Don’t forget that your input provides valued insight for future versions.  Have something to share?  Please Contact Me with your input. Revised: November 21,  2020 

  SUPPLEMENTS:

Magnesium: Most people who do not have kidney problems or other health problems such as atrial fibrillation, myasthenia gravis or high blood magnesium usually benefit from a magnesium supplement of 250 mg – 450 mg or so a day. Be aware magnesium like many metals becomes toxic at a relatively low multiple above its Recommended Daily Allowance. If you’re deficient in Magnesium, you may need a higher dose, but you should check with your healthcare provider before taking large doses of magnesium that exceed the RDI.  The following types of Magnesium have been reported as helpful to some floxies:

• Magnesium L-threonate : is often used for its potential brain benefits with some individuals reporting success combating brain fog with this form of magnesium.  See my article:  Is Fluoroquinolone Brain Fog Actually Chemobrain?
• Magnesium glycinate: is easily absorbed and may have calming properties. It may help reduce anxiety, depression, stress, and insomnia.

Supplements of vitamin D3 and of B complexes are also widely supported.  Healthy Origins makes a Vitamin D supplement with no soy.  Desert Harvest makes a Vitamin B complex with NO B-6.

Probiotics such as Align Digestive Care Probiotic or refrigerated probiotics at health food stores or yogurt with active cultures are valuable to prevent antibiotic-associated diarrhea including from Clostridium difficile overgrowth.

Vitamin B6, although generally considered safe and necessary in low doses, has caused exacerbation of peripheral neuropathy in some floxies even when taken in low doses in supplement form and some of the symptoms, such as tingling, lasted for long periods.  Adverse effects have been documented from vitamin B6 supplements, but never from food sources.♦Desert Harvest makes a Vitamin B complex with NO B-6.  So far I have not found any other Vitamin B complexes without B6. 

Many people try many other supplements and don’t let this stop you, but be warned there have been excesses ending in hospital visits or making the situation worse.  So do be careful. Please remember, “What work for one, can be a disaster for another.” ~ David

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  MEDICATIONS:

Fluoroquinolones: Having had an adverse reaction to Fluoroquinolones, you should not take fluoroquinolones or quinolones again for the rest of your life as the medication insert states. This list includes Cipro, Levaquin, Avelox, Floxin and other members of the quinolone family. Your next Fluoroquinolone exposure will always be much worse than your last.  (Further reading: Cumulative Toxicity of the Fluoroquinolones) 

We are not doctors and can’t tell you what to do, but several floxies write a special note on their doctor forms “adverse reaction – fluoroquinolones” near the allergy section.

Steroids: Medium to large doses of steroids like cortisol, cortisone, and prednisone (technically “corticosteroids” or “glucocorticoids”) in all non-inhaled administrative routes – creams (topical), pills (oral), and injections (parenteral) – dramatically worsen or bring back tendon problems, and also worsen nerve pain and joint pain; their damage may be worse than the original FQ symptoms and lasts months to years.

We are not a doctors and can’t tell you what to do, but we can tell you that several floxies write a special note on their doctor forms “adverse reaction to steroids” near the allergy section.

This adverse effect to steroids seems to apply for a minimum of 5-10 years post FQ ADR onset for those who are susceptible to it. Between 10% to 25%  tolerate steroid usage to varying degrees. Those who are already taking and tolerating glucocorticoids and derive benefit and need not stop, but stories from those who did not tolerate them strongly suggest to use extreme caution and avoid experimentation when possible for those who have not yet tried. Inhaled steroids are larger molecules with low systemic absorption when used sparingly and appear mostly safe; asthma sufferers may consider spacers or DPIs. Other common drug names: hydrocortisone, prednisolone, dexamethasone, and betamethasone. The academic literature agrees with the recommendation of avoiding steroids in FQ induced tendinopathy, (e.g. Damuth et al 2008, PMID 19161929).  See Steroid Usage Post Fluoroquinolones

Anti-Malarials: Despite big differences in their form and function, the drugs are close enough in relation (chemical cousins) that we do see cross-influence between the drugs, especially in certain people. We see these drugs contributing to both cumulative toxicity and cross-adverse event profiles with the fluoroquinolones. In other words, if a person has previously taken doses of anti-malarials, the likelihood or percentage of developing an adverse event to the fluoroquinolones appears to increase. Conversely, if a person has had an adverse event to the fluoroquinolones and then takes an anti-malarial, the likelihood of having a relapse or worsening of the fluoroquinolone adverse event goes up, sometimes significantly, depending on the antimalarial taken.

Over the years anecdotal data has shown us that:

• Mefloquine intolerance ranges from p= 0.80 (newly floxed) to p= 0.50 (farther out)
• Chloroquine intolerance ranges from p = 0.75 (newly floxed) to p=0.35 (farther out)
• Hydroxychloroquine intolerance ranges from p=0.45 (newly floxed) to p=0.20 (farther out)

Of the antimalarials, the anecdotal data suggests that mefloquine represents the greatest risk of contributing to a more severe or permanent injury, followed by chloroquine, and to a lesser extent hydroxychloroquine.  This data would confirm that hydroxychloroquine, although not ideal and could still pose a risk, is the less toxic of the quinoline antimalarials in relation to FQAD.

There have been a floxed individuals who have reported they tolerated Plaquenil (hydroxychloroquine), having had to take the drug for Lupus, Lyme and Arthritis. 

Eye Drops/Ear Drops: Regarding Eye drops and Ear drops, permanent vision loss has been reported from use of the fluoroquinolone eye drops in those sensitive to oral FQs. FQ eye drop and ear drop drugs have generic names that end in the suffix “-oxacin”. See Can You Be Floxed By Eye Drops?

The Neuropathy Association advises neuropathy sufferers to avoid:
chemotherapies, amiodarone, chloramphenicol, chloroquine, colchicine, dapsone, disulfiram, ethambutol, fluoroquinolones, isoniazid (INH), linezolid (Zyvox), Flagyl (metronidazole), Macrobid (nitrofurantoin), nitrous oxide (laughing gas), nucleoside analogs (zalcitabine ddC), stavudine (d4T), didanosine (ddI), procainamide, phenytoin (Dilantin), statins, tacrolimus (FK 506).
Another list may be found here:

http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/typesofpn/toxic/drugs.shtml

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ILLNESS AND EXERCISE:

Illnesses seem to have the potential to trigger flare ups that last days to weeks, affecting at minimum tendon, joint, muscle, and nerve pain. Also affected are “brain fog” symptoms, including short term memory deficits, confusion, and lack of coordination. Sometimes minor common colds do not cause flare ups.

In all but moderate reactions, exercise beyond personal physical limitations causes next day body wide fatigue.  Some individuals ‘crash’ if they exert themselves beyond their energy envelope.  This crash can last from hours to several days. This post exertional malaise is commonly seen in fibromyalgia and chronic fatigue (CFS/ME), and in many individuals probably linked to mitochondrial dysfunction.

Weather related storms and temperature changes have been reported to cause symptom exacerbation. A common manifestation is joint pain, neuropathic pain, or muscle twitching exacerbated by storms and cold weather. Cold weather also affects poor peripheral circulation and feelings of being unusually cold.

COVID-19: Most people suffering with Fluoroquinolone Toxicity, especially severe cases or those who are Chronically affected with multiple co-morbidities would be considered at “high risk” for COVID-19 because of multiple underlying medical conditions.   We recommend maintaining adequate vitamin D3 levels (Covid & D3).  

A drug free way to help prevent respiratory illnesses such as COVID, colds, and flu is to use an airway protectant such as Fend nasal spray.  This is backed by science and is basically side effect free.  It has been used by several floxed folks since the start of COVID and has a proven track record through 2023.  Follow this link here to get a $5 discount on FEND. 

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EMOTIONS:

Emotions of anger, stress, fear, and hatred will make your symptoms worse as will sleep deprivation. Their correlation with cortisol release has not gone unnoticed.  This trend also applies to other chronic pain syndromes.

Emotions of love, laughter, relaxation, and a sense of humor tend to diminish symptoms.

FOODS:

Percentages in this section are based on a Feb 2011 survey of FQ-induced, long-term ADR sufferers. Of 131 respondents, 63% reported a problem with at least one type of food making their symptoms worse, but any given food only affected a minority overall (sometimes a large minority). Stated alternatively, development of food sensitivities is common, but each person’s food sensitivities differ from another’s.

For a majority, people can eat just about anything after a few months or a few relapse-remission cycles.  There is a segment of chronic sufferers who develop long term intolerance to certain foods, again each person’s food sensitivities differ from another’s.

Caffeine and coffee triggers a day of anxiety, insomnia, and panic attacks (CNS symptoms) in about 51% of those already experiencing such symptoms. Sometimes neuropathy is also aggravated. Caffeine sensitivity typically disappears between 3 and 9 months. Some may have trouble metabolizing caffeine (feels like a jittery overdose) for about as long. Overall 35% are in some way affected. People with heightened hypersensitivity to caffeine can’t tolerate even small amounts of it without experiencing negative side effects.  Please note: This is not the same thing as an allergy to caffeine. A variety of factors causes caffeine sensitivity, such as genetics and your liver’s ability to metabolize caffeine.

Sugar in large amounts (e.g. a large soda or dessert) exacerbates certain CNS and PNS symptoms for 38% with neuropathic pain, vision disturbances, or muscle twitching, but also popping/crackling joints. 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 tract. Overall 30% are in some way affected.

Soy reportedly triggers 2-5 days of up regulated pain in 23% or more. Nerve, tendon, and joint pain effects are reported. Soy lecithin is used in the fabrication of many supplements and pills. Males are affected disproportionally. These symptoms do not resemble soy allergy, and the shear commonality of this makes it unlikely to be related to food allergies, though the only person reporting a soy allergy blood test, which came back negative, did not have flare ups from soy. Note: The author believes difficulty in removing soy-derived ingredients (lecithin, mono- and di-glyceride, etc.) for testing leads to under-reporting and up to 35% could be affected.

Those with endocrine abnormalities (non-thyroid) post-FQ exposure are more likely to react to caffeine, sugar, and soy.

In early months, alcohol sometimes exacerbates peripheral neuropathy (especially heat and buzzing), joint pain, or joint stiffness for a couple days.

Less commonly reported are sensitivities to dairy; and in those predisposed, fibromyalgia triggers of artificial sweeteners, carbonation, and MSG. Sensitivity to MSG most commonly triggers headaches, difficulty focusing, anxiety, insomnia, and panic attacks beginning from a few hours up to 12 hours afterward and lasting for 24-48 hours.

Gluten has been reported to perpetuate joint pain in a proportion, with gluten-free periods ranging from 24 hours to 3 weeks yielding substantial pain reduction; less commonly other symptoms are affected.

The safest animal protein sources have historically been beef, organic eggs, wild caught fish, organic chicken (except Whole Foods stores have medium safety). The U.S. food supply is becoming increasingly safe through the 2010’s. The vast majority are unaffected by these.

The relatively least safe animal protein sources have historically been foreign sourced meats (especially from China _s), farmed fish, and bottom feeders like shrimp and mussels.

Exposure to unsafe meat brings back CNS and PNS symptoms within hours, lasting around 7 days to several weeks.

The cause of food sensitivities/intolerances is unknown; the symptoms do not resemble typical allergy (IgE mediated type I hypersensitivity) but several appear consistent with Type II or Type IV hypersensitivity.

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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 here are some recommendations.

 Tendons/Joints/Muscles: 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 usually 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.

Nerves: For nerve problems, pains under the skin, anxiety, insomnia, or depression see a neurologist. FQ-induced neuropathy most commonly affects legs to feet, forearms to hands, the face, teeth & gums, and head; and feels like: tingling, prickling, pins&needles, numbness; bugs running on the skin, moving fabric, water trickling down; burning; deep stabs, electrical zaps; buzzing; or a sense of pressure. The sense of pressure or squeezing is most common on the head running from the back of the head to the forehead and even down the face. The neuropathy can also cause abnormal sensations: feeling pain instead of normal touch or hypersensitivity to pain. It is typically worst at night. In medical terminology, it is most often a non-length-dependent, “idiopathic,” small fiber sensory neuropathy. Names of Peripheral Neurologists can be found at the Neuropathy Association website under “Resources” then “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.

For vascular problems, consider seeing a vascular doctor from: http://www.svmb.org/clinical_archive/find_physician.cfm

Pain management doctors are usually of no value according to data received.

It helps to see a doctor who has a background in pharmacology; only 47% of medical school programs include pharmacology training.

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TESTS:

All medical tests should be interpreted by a trusted health provider.  The ability for floxies to obtain tests varies via individual situations.  Some floxies have the ability to obtain necessary medical care, while others have limited means and thus limited access to testing.  Because of this, where applicable, I have listed by each test information on each and a link to a lab for low cost testing.  Lab tests can vary tremendously in their price between labs.  Right now Walk-In Labs offers some of the best prices and they use either LabCorp or Quest Diagnostics for testing. I  occasionally shop around to try and find the lowest cost, on average. Obviously, no one is under any obligation to use this information, it is just provided as a service to those who wish to use it.  If any monies are generated from low cost lab affiliate links, it is donated to academic FQ research, I never personally profit.  Read my monetization policy here. Note: Links below have been updated and I will continue to add information as time permits.

A description of some of the more common test abnormalities seen on each test, anecdotally observed and shared by floxies, is listed in the section directly below this section.

(highest priority first:)

(medium priority:)

• fasting blood glucose and insulin; hemoglobin A1C.
• IGF-1, HGH.
• apolipoprotein A-1 (Apo A-1).
• cortisol.
• cholesterol.
• blood pressure and EKG, if heart rhythm is abnormal.
• vitamin B1, B3, B5, B9, if nerve pain still present at 3 months.
• brain MRI and quantitative EEG, if CNS symptoms are debilitating and last > 2 months.
• abdominal ultrasound (look for liver, kidney, spleen, ovarian lesions/cysts).

(low priority:)

•  gastric emptying study.
• endoscopy.
• oral glucose tolerance test with 75 grams glucose measuring glucose and insulin for four hours (if tolerant of some sugar), if no neuropathy improvement in 6 months.

Your doctor may also want to rule out rheumatoid arthritis, lupus, drug-induced lupus (anti-histone antibody test), Lyme disease, Sjörgren’s syndrome, multiple sclerosis, fibromyalgia, mixed connective tissue disease, polymyositis, neuromyotonia (NMT, aka Isaac’s syndrome), and erythromelalgia depending on your symptoms.

If experiencing excessive bruising or dark blue spots under skin of limbs (petechiae or purpura), ask your doctor if prothrombin time (PT) and partial thromboplastin time (APTT) tests are advised.

For neuropathy, nerve tests of nerve conduction studies that check demyelination of muscle control nerves and electromyography (EMG) that measures muscles and nerve-muscle junctions may be abnormal in severe cases wherein reduced muscle output and muscle wasting are experienced. Skin punch biopsy to count damaged small fiber nerve axons is the most reliable test for FQ neuropathic pain, particularly with sensations of diffuse pain, burning, or buzzing. Unless severe and disabling, waiting 3 months before testing can increase likelihood of measurable damage on tests. In less severe cases, only the skin punch biopsy may be abnormal. Despite the usefulness of QSART in diagnosing peripheral neuropathy as reported in medical literature and the commonality of suffering changes in sweating response such as lack of sweating, no reports of test results have been shared thus far.

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A description of some of the more common test abnormalities seen in Fluoroquinolone Toxicity:

(Correlated with the highest priority tests:)

• Vitamin D: Many floxed individuals have reported low Vit D level (this could correspond with the general population statistically), and in some normalizing Vit D helped with FQ symptomatology.  Many (not all), however, reported poor responsiveness to supplementation.
• Inflammatory Markers: C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) and lactate dehydrogenase (LDH) indicate inflammation or cell death and can justify musculoskeletal symptoms, with CRP most commonly being high during the early months.
• Autoimmune Markers: ANA tests are often abnormal with speckled pattern (indirect immunofluorescence microscopy) or high titer numbers (ELISA) reported, particularly in women. Less commonly than for ANA, rheumatoid factor has also appeared high for several months.
• Ferritin has been found low in many sufferers including those who later developed fatigue.
• Testosterone: Low testosterone for men is very common (up to 50% affected), but also occurs in women; FQ testosterone effects appear in animal studies; low testosterone is pro-inflammatory.
• Thyroid markers are often lowered in men and women, and thyroid medications often need adjustment.
• B Vitamins: Those who go on to develop neuropathy have often reported low vitamin B12 or B6, although a fraction (~10%) with neuropathy already have high vitamin B6 levels so that B vitamin supplementation exacerbates neuropathic pain.  Be very careful with B6 supplementation.
• Blood Count: Complete blood counts with differential, lymphocyte subpanels, complement tests (CH50, C4, etc.), total IgG, and IgG subclass tests have often revealed abnormalities in counts of lymphocyte and CD cell types and abnormalities in ratios between IgG subclasses.
• Progesterone: A number of women have reported low progesterone.
• Magnesium: A number of sufferers have low magnesium for months.
• MRI Results: MRI tests have revealed tendon degeneration, cartilage degeneration, cysts, and labral tears, but many MRIs didn’t detect abnormalities unless pain was severe or range of motion was limited.

(correlated with the medium priority tests:)

• Blood Sugar: Fluoroquinolones as a class can cause dysglycemias _(src).  Blood sugar irregularities (hypo/hyper) are often reported, especially early on in Floxing. 
• Growth Hormones: High HGH or IGF-1 during the first six months has been reported by several of those with diffuse tendinopathy.
• Blood Lipids: Apolipoprotein A-1 has tested extremely high for a few.
• Cortisol: High cortisol in the first 2-3 months has been reported by a few.  Some chronically floxed individuals have reports consistently high cortisol as tested by 12 hours saliva tests. Possibly due to chronic inflammation. 
• Cholesterol: Several have reported elevations of cholesterol with respect to previous tests.
• Blood Pressure: Several of those with abnormal heart rhythm (cardiac arrhythmia) have found unstable high and low blood pressure as well as abnormal electrocardiogram (EKG) results.
• B Vitamins: Again, several other B vitamin high/low abnormalities have been reported.
• MRI Results: Several of those left unable to work had permanent brain lesions or brain abnormalities revealed by MRI and or quantitative EEG that justified claims for Social Security disability benefits (see FQ Social Security Disability Guide).
• Lesions/Cysts: Liver enlargement, liver lesions, kidney cysts, spleen enlargement, spleen lesions, kidney lesions, and ovarian cysts all have been reported with frequency.

(correlated with the low priority tests:)

• Gastroparesis: Gastric emptying studies have revealed delayed gastric emptying (gastroparesis) frequently in those having neuropathy or mitochondrial pathologies combined with constipation or slow motility.
• Endoscopy: EGD has revealed stomach inflammation in several of those with nausea, reflux, and extensive food tolerance problems.
• Blood Sugar: Four-hour long oral glucose tolerance tests (OGTT) using 75 grams of carbohydrates have revealed a variety of blood sugar abnormalities for several persons, such as reactive hypoglycemia and more.

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FOR DOCTORS:

When talking to doctors, it might be useful to tell them what page numbers in the 2011 Physicians Desk Reference to cross reference for confirmation that your symptoms are known FQ side effects, hence the following table is provided:

Book: Physicians Desk Reference, 2011, 65th edition.

Drug trade name (Generic name): page numbers describing Tendon, CNS, PNS, Arthralgia, Myalgia, Ocular side effects.

Cipro (Ciprofloxacin): pp. 1957 & 1959, p. 1961, p. 1959, p. 1961, p. 1957, p. 1961.

Levaquin (Levofloxacin): pp. 2710 & 2718, p. 2710, p. 2710, p. 2711, p. 2711, p. 2717.

Avelox (Moxifloxacin): p. 1942, pp. 1943 & 1944, p. 1943, p. 1944, p. 1944, missing.

Book: Drug Facts and Comparisons, 2011.

Drug trade name (Generic name): page numbers describing Tendon, CNS, PNS, Arthralgia, Myalgia, Ocular side effects.

Cipro (Ciprofloxacin): pp. 2150 & 2158, p. 2152 & 2159, p. 2159, p. 2152, missing, p. 2152.

Levaquin (Levofloxacin): pp. 2150 & 2153, p. 2153, p. 2151 (only as “parasthesias”), p. 2153, p. 2153, p. 2153.

Avelox (Moxifloxacin): pp. 2150 & 2172, p. 2153, missing, p. 2153, p. 2153, missing.

NegGram (Nalidixic Acid): p. 2143, p. 2144, p. 2143, p. 2143 (“juvenile animal”), missing, p. 2144.

Your doctor should note that the adverse reaction rates for arthralgia (joint pain) run about 4.5% more than placebo for Levaquin with at least 1% occurring after drug discontinuation, and adverse reactions of CNS and PNS symptoms runs up to 2% in Avelox.  On PDR page 2710 section 5.6, Levaquin is described as causing axonal neuropathy, which is not something that goes away in any short length of time.

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COMMON MEDICAL SITUATION SUGGESTIONS:

• Eye Exams: Eye exam dilating eye drops have not been a problem.
• Anesthesia for Dental, Endoscopy, and Colonoscopy procedures: For local anesthesia, lidocaine with or without epinephrine is reported as okay; regular epinephrine side effects include a racing heart and some anxiety. Despite European popularity, articaine at a 4% concentration has been known to cause permanent localized injury even in non-FQ users and should be avoided. Septocaine contains articaine. Topical oral anesthetics like benzocaine are generally not subject of complaint. For general anesthesia, Nitrous Oxide Laughing Gas or the combinations of Versed + Valium or Versed + propofol are reported as okay. The American Academy of Neurology recommends against nitrous oxide gas if having peripheral neuropathy.
• Colonoscopy preparation: The laxatives MoviPrep, Miralax (polyethylene glycol), and Dulcolax (bisacodyl) have all been reported as tolerated. One suggestion exchanged is to apply Vaseline to the perianal regions before initiating laxative treatment to make cleanup easier.
• MRI: I fully realize the controversy surrounding MRI’s and the use of gadolinium, however there are floxies that are faced with having to have a MRI with contrast out of medical necessity, such as having to image a brain tumor and the doctor needs to see all the vascular connection. If you have a 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 most Fluoroquinolone ADR sufferers. There are people in the world with permanent injuries from some gadolinium agents. We have also received a few reports of individuals who reported negative symptoms from gadolinium. These that were the most greatly impacted had a mitochondrial pathology and also claimed heavy-metal toxicity issues.  If you suspect heavy metal issues caution is warranted. Also, NSAID use, antimicrobial use, most drugs, dehydration, taking supplements, and recent exercise all increase injury risk by increasing kidney workload when the dye is in the body. Those concerned with safety can refuse dye for a first scan, 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. At 1.5T, the dye “Multihance” is safest when requested at 1/2 dose. The dye “Prohance” at 1/2 dose is safest at 3T, and has no permanent side effects reported. The dye Eovist is good for patients with elevated Creatinine to 1.9. MRI with contrast dye should not closely follow CT scan with contrast dye due to temporarily reduced renal function.
• Prostatitis is usually not bacterial, so cultures should be taken to establish origin; doxycycline for 45 days is effective for bacteria.
• UTI treatment success has been reported with: natural treatment of cranberry juice and D-mannose; prescription trimethoprim.
• See Reported Drugs with Mitochondrial Toxicity

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PAIN RELIEF AND SYMPTOM COPING STRATEGIES:

In medicine, all treatments are probabilistic, and each individual will have treatments to which they do not respond even though others do. FQ ADR sufferers tolerate supplements and natural treatments at a much higher proportion than pharmaceuticals, but pharmaceuticals are more powerful in their effects. Some sufferers develop idiosyncratic reactions to previously tolerated medications and supplements, though those having only musculoskeletal ADRs generally do not.

Oral anti-inflammatory medications like aspirin, ibuprofen, Motrin, Advil, naproxem, Aleve, and Celebrex (celecoxib) are often ineffective for the first few months or years after FQ adverse reactions, worsening symptoms (esp. nerve symptoms) in about 25% of reporting sufferers, with about 25% reporting these has helpful. Use during or within 10 days of FQ use is associated with worsening of central nervous system and peripheral neuropathy symptoms. Tylenol / paracetamol / acetaminophen is a bit different in mechanism of action. Research recent to 2011 suggests NSAIDs delay normal (that is, sports-induced) tendon healing and should be used as short a duration as possible. Dozens of biopsies show normal tendinopathy, though it may last many months, loses its inflammatory components within the first few weeks. However, the healing pattern of FQ induced tendinopathy does not resemble normal tendinopathy. An individual should decide if he/she wants to use NSAIDs or not.

For tendon pain and muscle pain, pain relief has been reported with: the topical prescription NSAID Voltaren Gel (only in the first few weeks on any given tendon); and with over-the-counter (OTC): ice massage; Tylenol / paracetamol / acetaminophen (which shouldn’t be taken with alcohol); Tiger Balm; Icy Hot topical analgesic; juice of a lemon in a cup of water twice daily; and to a minor extent transdermal magnesium oil. Ultrasound and TENS units sometimes help, but low level laser has generally not been of benefit. Massage is sometimes pain relieving. For Achilles tendinopathy, benefit has been reported from heel shoe lift inserts and orthotics, while those with shoulder tendinopathy report overnight pain benefit from: foam mattress pads on their beds, specialty pillows, and sleep number beds. Those with tendon pain in hands, forearms, and knees reportedly benefit by sleeping with braces on affected knees and wrists to protect from motion and pressure overnight. Techniques that may increase healing rate in those showing healing capacity include: nitroglycerin patches and 0.2% ointment; deep and slow gua sha performed from tendon insertion across muscle to tendon origin; ASTYM; and (again only for those showing existing healing capacity) prolotherapy and platelet rich plasma.

For muscle pain, relief has also been reported with cyclobenzaprine; Soma (carisoprodol). OTCS: rest; massage; NSAIDs. Supplements: magnesium oil.

For joint pain, relief has been reported with NSAIDs and with fish oil at 4-6 g once or twice daily (wild caught sources recommended). Collagen supplements have not been found helpful.

For TMJ-area pain, temporary relief has been reported with: heating pads, massage for TMJ, topically applied magnesium oil (a general pain reliever), and mouth splints from a TMJ specialist.

For nerve pain, Neurontin (gabapentin) and Lyrica have been tried successfully, but there are side effects to those medications. The SSNRI Cymbalta works very well for some but is terrible for others, and withdrawal is harsh. Several consider nerve gliding performed by a physical therapist as the most helpful treatment. As OTCs: Benadryl; epsom salt baths; tennis ball massage for foot neuropathy; if good circulation present then icing and/or wearing compression socks; ginkgo biloba; acetyl L-carnitine sometimes with alpha lipoic acid (if tolerated).

For depression, talk therapy, connecting with others, and religious practices have all been found beneficial. Studies show talk therapy is as effective or more effective for depression than medication. SSRI’s Lexapro and Celexa and SSNRI Cymbalta (hit or miss) have been tried successfully sometimes with simultaneous reduction of nerve pain, but Prozac and Zoloft worsen any nerve pain. As OTCs, transdermal magnesium oil and SAM-e have minor anecdotal support. There are a number of reports of amitryptyline worsening neuropathy and some CNS symptoms. Article on anti-depressants after FQ’s here.

For pain in general, opioids are rated highest of all treatments tried, with OxyContin having better reviews than Vicodin. Opioids do not appear to have a significant effect on mitochondrial function. Tramadol also has many positive reviews. Morphine has been tried successfully. A small percentage about 15% report help with pain from legal cannabis with a balanced CBD/THC 1:1 ratio. As OTCs, typical chronic pain syndrome techniques help, with: strong support for warm baths enhanced by Epsom salt and for massage; moderate support for acupuncture and for tolerated light exercise at least every 3 days. Level of activity tolerated changes with progression of symptoms and relapses; as a general rule, pain from exercise lingering more than two hours means it was overdone. As for supplements, there is strong support for turmeric/curcumin and minor support for chlorella. Detox diets have not been particularly helpful.

Pain medications should be started at the lowest standard dose, and then increased to the expected dose while watching for adverse reactions.

The most common gastrointestinal problems fall under the condition of “antibiotic associated diarrhea” which is caused by overgrowth of anaerobic and/or resistant bacteria species not targeted by FQs and affects about 20% of all FQ users. Short term success has been reported with: bananas to control diarrhea; Pepto Bismol. Long term success has been reported with: the antimicrobial rifaximin; probiotic supplements containing multiple bacterial strains especially refrigerated probiotics at health food stores; and replacing entire meals with probiotic containing foods. Probiotic containing foods include yogurt with active cultures and Kefir (a yogurt drink found in health food stores). A special restriction regarding only probiotic foods is that they should not contain inulin, maltitol, or any other sources of dietary fiber, or any sugar alcohols, which can feed “bad” bacteria. Regarding gastrointestinal symptoms, removing sugars from the diet for a few weeks is sometimes necessary.  The FODMAP diet has been used successfully in this context. Current research indicates yeasts are always present in the digestive tract and moderately increased yeast presence after antimicrobials is a side effect of antibiotic associated diarrhea, not the cause of it. Development of thrush and need to take an anti-fungal drug is less common, affecting 3-4% of all FQ users; FQ ADR sufferers report tolerating anti-fungals Diflucan (fluconazole, more systemic) and nystatin (more local but easier on liver).

Gastrointestinal symptoms of acid reflux, nausea, and constipation also occur and have been associated with autonomic nervous system damage or dysfunction of digestive system acetylcholine neurotransmission. For both nauseau and acid reflux, sufferers may find some relief from: avoiding acidic foods; avoiding some nightshade foods (sometimes just when cooked). For just nausea: prescription Zofran; Dramamine (dimenhydrinate); Dramamine II (meclizine); ginger; colostrum. For just acid reflux: proton pump inhibitors like Nexium (esomeprazole) and Prilosec (omeprazole); histamine H2 receptor antagonist Pepcid (famotidine); the supplement slippery elm bark. For constipation relief has been reported with: eating prunes; eating wheat bran; eating rice bran. As OTCs: Miralax; fiber products; supplement alpha lipoic acid (which also helps with food tolerance); triphala.

For insomnia, success has been reported with: Benadryl (which should only be used in short term); the supplement melatonin; Ambien; Valium; Tylenol; Klonopin; gabapentin; the supplement chlorella; hawthorn; magnesium; Hemi-Sync CD’s with binaural beats; and many other prescription and OTC methods but not as consistently with valerian. Many people found caffeine worsens insomnia while a few found alcohol, vinegar, and carbohydrates worsen their insomnia; still others found reasonable amounts of alcohol helpful.  About 25% report CBD (without THC) helps with sleep, while a smaller percentage about 15% report insomnia help with CBD/THC 1:1 ratio.

For anxiety, Xanax and Ativan have good reviews, but should only be used for periods of several consecutive days to prevent dependency. OTCs: Epsom salt baths; warm milk; chamomile tea; the supplement inositol; and two juiced limes (as an inositol source) twice daily.

Dry eye which can cause light sensitivity (photophobia), difficulty focusing, and halos 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; having an ophthalmologist plug tear ducts with temporary, dissolving plugs (“punctal plugs”); prescription restasis eyedrops; protecting light-sensitive eyes with sunglasses. Specific brands recommended have included Allergan Refresh Plus Lubricant Eye Drops in Single-Use Vials, and Optive Lubricant Eye Drops for Single Use.

Improvement of visual problems of floaters and dark black specks has been reported with the supplements bilberry and lutein and grape seed extract for several months.

For poor peripheral circulation, relief has been reported with: heating pads to encourage vasodilation; wearing thin gloves with finger holes cut; submersing limb in buckets of warm water; the combination of double dose gingko biloba + odorless garlic + pycogenol.

Back pain relief has been reported from: TENS units; inflatable seat cushions for car travel (e.g. ThermaRest “camp seat cushion”); orthopedic pillows designed to raise legs for sleeping (e.g. “ortho bed wedge“); the muscle relaxant cyclobenzaprine; ice.

Brain fog symptoms have been reported to improve with the supplements alpha lipoic acid and acetyl L-carnitine, though alpha lipoic acid may exacerbate neuropathy for a few hours in those less than one year into ADRs, while improving nausea + acid reflux, and double vision in others.

Improvement of fatigue has been reported with: vitamin B’s (if blood tests show existing levels are not too high); D-ribose; colostrum; getting plenty of rest; thyroid supplementation that includes T3 triiodothyronine. Specifically for males also having low testosterone: subcutaneous prescription hCG injection; and/or testosterone therapy.

Relief from fasciculation has been reported with various benzodiazepines (which should not be taken more than periods of a few consecutive days to prevent developing dependency), and magnesium supplements.

Male low testosterone has been successfully treated with subcutaneous prescription hCG injection; and/or testosterone therapy..

Tachycardia (rapid heart rate) is reportedly worsened by stress and lessened by beta blockers, like Toprol (metoprolol).

The supplement rutin and its component quercetin (which binds to DNA gyrase like FQs) have purportedly worsened symptoms in some.

Alternative therapy techniques leading to several days of overall feelings of improvement for a portion of so-inclined users include: glutathione and vitamin IV infusions; hyperbaric oxygen therapy; ozone therapy; Traditional Chinese Medicine bloodletting. Some find low-sugar diets like the Paleo diet, Caveman diet, Candida diet, or other variations such a FODMAP diet helpful, which help with a diverse set of symptoms. N acetyl cysteine (NAC) was found helpful by some. Religious Faith was also identified as helpful by some.

This is a deliberately abridged summary of successes reported daily in support groups, and the best solutions may still be waiting for your discovery.

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COMMONLY REPORTED CLASS EFFECTS

The following is a collection of symptoms, observations, and unusual effects that have been reported by many floxed individuals.  Please note that not all floxed people experience or will experience these occurrences. However these have been reported, anecdotally, in enough numbers to warrant mentioning.

• Cherry Angiomas: Cherry angiomas appearing on the skin have been reported my many floxed individuals.
• Cysts.  Many floxed individuals have reported the observation of cysts, usually benign and fluid filled, showing up on various forms of radiography.
• Lipid Abnormalities: Many have reported various serum lipids abnormalities despite having a lifestyle that would predispose to these abnormalities.
• Carb Restricted Diets: Poor performance on total carb restricted diets.  Many floxed folks report doing very poorly when attempting to completely eliminate or follow a very low carbohydrate diets.  Enough people have reported this effect to rule out sugar withdrawal.

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MISCELLANEOUS:

Fluoride, Lead, Lyme, Parasites, and Candida yeast are not causes of this condition, though thrush is an infrequent, treatable consequence.  These conditions can exacerbate FQAD and definitely make the suffering worse but they are not the cause of FQAD.

It is unnecessary for FQs to remain in the body for new symptoms to be appearing for months afterward.

The FQ-injured considerably benefit by joining online support groups.

Feeling the worst location of tendon or nerve pain change location every 1-3 days is typical, and if experiencing such, join a support group even if you must use a pseudonym.

FURTHER INITIAL READING:

If you are are new to this plight:

What is Floxing?

My Quin Story’s FQ FAQ

The page at:

http://en.wikipedia.org/wiki/Fluoroquinolone_toxicity

…is well-researched, unlike most Wikipedia health articles.

Admin Note: the Wikipedia page on Fluoroquinolone Toxicity (above) has been censored and redirected to a very ‘sanitized’ page time ago and is no longer worth of viewing. For now it is possible to view a previous more detailed version of the page here:

http://web.archive.org/web/20130723042915/en.wikipedia.org/wiki/Fluoroquinolone_toxicity

The “Flox Report” linked from:

https://www.myquinstory.info/wp-content/uploads/2010/01/FLOX_REPORT_REV_11.pdf

Medications

My Quin Story’s Saving Money on Medications

Any of the many online support groups.

My Quin Story’s Recommended Facebook Pages

CURE:

There is no known cure, only time.

Revised: Nov. 21,  2020