Please note that the following information is supplied as general information only and is based on anecdotal information, it is also recommended only for those who have been suffering from Chronic Floxing for several years and consider themselves chronic stable or chronic declining. For those who are newly floxed, please see the “What Helps” for general information.
This advice is not meant to replace the advice of your doctor or medical professional so please discuss all medication use, including supplements, with your doctor. Reading this page any further assumes that you have read and agree with the disclaimer. Also please note that the data contained herein can and will change as further information is obtained.
Chronic floxing is poorly understood and multifactorial. I have compiled this page based on information collected from those suffering from chronic floxing. It is not designed to be a miracle cure or solution and may or may not help in your case. There are two paramount steps; The first is to repair cellular damage and the second is to get oxidative stress under control. The supplements listed here take time to work so don’t expect them to perform miracles overnight. This information is basically averaged from what helps those who are chronically impacted by FQ’s and designed to help compensate for the factors that drive the oxidative stress mechanisms, not cure them. 03/01/2016
Step # 1 NT Factor
NT Factor is a substance originally designed to help those suffering from chemotherapy induced fatigue which is caused by oxidative stress to the mitochondrial and cellular membranes. It acts as a bandaid to repair the permeable condition of the mitochondria membrane structures. This is a base or foundational step on which to build. Gathered information tells us that NT Factor seems to be much more successful than just supplementing with individual lipids such as Phosphatidylcholine (PC). This is due to how the NT Factor mimics the lipid percentages in the mitochondrial membrane. I have written an article on membrane repair here. Floxies are following dosing instructions on the label. It is important to find the NT Factor that is plain without additional or proprietary ingredients. The only drawback is price. My suggestion is to shop around and look for sales or short date sales. More information is found in the following references: (1), (2), (3)
Floxie Toleration approx. 65%
Step # 2 Fish Oil
High dose fish oil has numerous reported benefits. It acts as a anti-inflammatory, lubricant, repairs cellular membranes, and regulates serum lipids to name a few. Many floxies have to start low and titrate up, with some floxies taking 9 grams a day or more. It is important to note that Fish oil can thin the blood a bit and uses up vitamin E in the body. If you are lacking in vitamin E taking fish oil could become a problem. Dr. Sears has written about the benefits of high dose fish oil in those fighting chronic illness. Look for a brand that does not have soybean oil, is purified from mercury and PCB’s, is from wild caught sources, and contains tocopherols (Vitamin E), to fight against oxidation. There are some floxies that do not tolerate fish oil and others that can only take smaller amounts. Please note: It is vitally important that if you take fish oil, you supplement with additional vitamin E, see next step.
Floxie Toleration approx. 50-55%
Step # 3 Vitamin E
Along with being a powerful antioxidant, vitamin E is and absolute must if you take fish oil. It is best to find a high quality brand that is water soluble with natural mixed tocopherols. Floxies are taking 400iu to 800iu’s a day, with those taking fish oil taking more towards the 800iu range. Vitamin E can thin the blood.
Floxie Toleration approx. 75%
Step # 4 Additional Important anti-oxidants
R-ALA R fraction or r-somer of alpha lipoic acid, commonly known as R-ALA, is a very powerful anti-oxidant which quenches all reactive oxygen species such as superoxide radicals, hydroxyl radicals, hypochlorous acid, peroxyl radicals, and singlet oxygen species. It also protects cell membranes by interacting with glutathione, which in turn recycles vitamins C and E. R-ALA is much more stomach friendly than traditional ALA and Chronic floxies are taking anywhere from 50 to 300mg per day. It some folks it can actually help with peripheral neuropathy. I can say enough positive things about R-ALA. It is my opinion that every floxie should be taking this supplement if they can. The only drawback to R-ALA is that it can be pricey, so I recommended shopping around for the best deal. (1)
Floxie toleration approx.: 80%
Buffered Vitamin C A powerful antioxidant Vitamin C buffered with sodium, magnesium, calcium, or potassium, is often gentler on the body, and can be taken without stomach upset and provides a longer-lasting effect. Floxies usually have to experiment of which buffered version agrees with their toleration needs. Dosing varies from person to person with the average reported amount of 3 grams a day.
Floxie toleration approx.: 75%
Selenium Another powerful antioxidant, Selenium has a safe upper limit of 400 micrograms a day in adults. Anything above 400 mcg is considered too much and could result in an overdose or become toxic. The average dose per day is reported at 200 mcgs.
Floxie toleration approx.: 85-90%
Carnosine Another powerful antioxidant, Carnosine can scavenge both free radicals and damaged protein products, give it unique protective characteristics that have the potential to lengthen. Dosing usually ranges from 250mg to 500mg daily. Carnosine can cause stomach upset in some people and can be pricey so shop around for the best price.(1)
Floxie toleration approx.: 45%-55%
Supplements to consider avoiding in chronic floxing:
Iron In a poorly understood process in floxies, iron seems to play an important role in the intracellular oxidative stress mechanism. Excessive iron imposes a pro-oxidant trend that needs to be counterbalanced in some way. Unless a medical doctor determines the need for additional iron, my advice is to steer clear of iron supplementation until more is known. (1)
Vitamin B6 Vitamin B6 is a water-soluble vitamin and assumed by many, including many naturopaths, to be very safe. But this supplement can be a wolf in sheep’s clothing. B6 is metabolized to its active form called pyridoxal-5′-phosphate or P5P. P5P is highly bound to protein in the blood, and once it is bound to protein cannot be excreted by the kidney and its half-life becomes 15 to 20 days. Eventually, P5P is again metabolized in the liver to 4-pyridoxic acid which is then eliminated by the kidneys. As a vitamin B6 is also a form of an aldehyde so it can contribute to the toxic systemic aldehyde levels.
Ironically low B6 can cause neuropathy problems, but this happens very rarely and should be confirmed by medical testing. Conversely, peripheral neuropathy (PN) can be caused by taking too much B6 as well. Many naturopaths, wrongly assume that the active form of B6 called P5P is safe at any dose and this is simply not true. There are no adequate guidelines defining the upper limit of B6 consumption plus there can be other confounding issues such as MTHFR that can also affect B6 absorption. Some floxed folks and others in the chronic fatigue community have reported a long term worsening in their PN from quite low doses of pyridoxamine (less than 25 mgs) or P5P (less than 15mgs). This is possibly due to poorer liver metabolization or already high levels of circulating aldehydes indicative of heightened oxidative stress. The dose that seems to cause the worsening of the PN seems to be quite individual but overall most most were taking less than 50mgs and disturbingly in some cases the worsening of the PN symptoms lasted a very long time. B6 can be readily obtained from many food sources, and there have been no reported toxicities from food sources, so why chance it?
Form many, chronic floxing appears to be driven by a strong oxidative stress mechanism. The only way to get it under control and get ahead of the repair curve is to repair the membranes and then get the oxidative stress under control. If you have any information to contribute regarding this protocol, pro or con, please let me know. Information gets updated in response to feedback provided by floxes.