Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 from The United Mitochondrial Disease Foundation web site: http://www.umdf.org/mitodisease/treatment.html Consult your physician before starting any of the following possible treatments First Tier Supplements CoQ10 5 – 15 mg/kg/day Levo-carnitine (Carnitor) Variable, starting dose of 30 mg/kg/day, typical maximum of 100 mg/kg/day Riboflavin (B2) 100 – 400 mg a day Second Tier Supplement Acetyl-L-Carnitine 250 – 1000 mg per day Thiamine (B1) 50 – 100 mg a day Nicotinamide (B3) 50 – 100 mg a day Vitamin E 200 – 400 IU; 1 – 3 times a day Vitamin C 100 – 500 mg; 1 – 3 times a day Lipoic Acid (a -lipoate) 60 – 200 mg; 3 times a day Selenium 25 – 50 micrograms a day b -carotene 10,000 IU; every other day to daily Biotin 2.5 – 10 mg a day Folic Acid 1 – 10 mg a day --------------------------------------------------------------------- ----------- Medication, Minerals, Vitamins and Substrates that May be Helpful Any use of the following medications, minerals, vitamins and substrates MUST BE made only under a physician's direction Supplement Dose Range Calcium Variable Magnesium Variable Phosphorus Variable Succinate 6 gm per day Creatine 5 gm bid after initial load (adults) Uridine To be determined Citrates Variable Prednisone Variable Vitamin K3 5-30 mg per day --------------------------------------------------------------------- ----------- Avoidance of Physiologic " Stress " Physiologic stress is triggered by external factors that may result in worsening the metabolic situation, which may result in temporary , or in sometimes, permanent worsening of the condition. It is impossible to avoid all physiologic stressful conditions, so one should not attempt to do so. However, recognizing what may be stressful for patients allows one to adjust the lifestyle. Many patients and their parents have already identified these stresses, despite not knowing why the stresses were important, and avoid them. Cold Stress is extremely important. Thermal regulation (temperature control) is not always normal in people with mitochondrial diseases and exposure to cold can result in severe heat loss and trigger an energy crisis. When going out into the cold, all exposed body parts should be covered, and exposure to extreme cold should be avoided for anything more than a short period. Over bundling can be a problem too (see below). Heat Stress can be a problem in some people. This is especially true of those with an inability to sweat normally. Heat exhaustion and heat stroke may occur on hot days. It is typical for parents to describe that their child seems to " wilt " in situations like hot classrooms or direct sunlight, whereas the other children function normally. Light clothing is important. Patients should avoid direct sunlight on hot days and stay indoors if it is too warm outside. An air-conditioned environment may be needed. Starvation – avoid fasting. Lack of sleep may possibly be harmful Quote Link to comment Share on other sites More sharing options...
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