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UsernameLast updated (mm/yy)Current activity levelLowest activity level everUnwell since (Year)ME/CFS diagnosis? Other relevant diagnosis (if applicable)Worst TWO symptoms (excl. fatigue / PEM)Treatment categorySpecific therapyStart date (mm/yy)End date (mm/yy) / ongoingImprovement in main two symptoms (%) Activity level at startActivity level at endTime taken to improve (months)Relative improvement activity levelCommentsSide effects or reactions
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PWCalvin04/11/20126420112011Low NKC function, candida, low testosterone and thyroid, EBV, HHV-6, Mycoplasma1. SOB, 2 Kidney PainGeneral treatmentLow carb diet, ribose 5gx211/2011OngoingGI tract 95%; SOB 50%; kidney pain 0%20%461-2 months2Also improved with Vitamin D3, T3 Thyroid hormone, melatonin for sleep, Methyl B12, and many others. Full list here: http://quixoticmeblog.blogspot.com/ Suffered a brief but severe crash from potassium deficiency after starting methyl B12
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Charles555ncGeneral treatmentVit C, sodium ascorbate 5g; DHEA 25gOngoing40%
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xrunnerbetween 4 and 6 (maf314 and hypoth. drag energy levels down)120042006Multiple Chronic Infectious Disease Syndrome(a) chronic flu-like; (b) nerve vibrations.AntibioticsMinocycline+Rifampin +Azythromycin alternated to Metronidazole. Biofilm reducing enzymes.10/201012/2011 ca 4months in all(a) 100%, (b)90%50%241-2 months1.5Supportive treatments: SMP, mercury detox, NAET, some herbals. Current treatment: MAF314, enzymes, mercury chelation, herbals, hypothiocyanite.
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AsklipiaGeneral treatmentVit K2 "Menatetrenone MK4"60%
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Valentijn1120112011Orthostatic Intolerance, WiredHydroxyB12, N-acetylcysteine06/2012Ongoing70% (OI effect temporary)60%37 (lasted 2 months)12 hours?Level 1 due to OI. All symptoms get worse if I stop these.
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Mark519951. Chemical and mold sensitivities 2.Food sensitivitiesDetox / Myhill protocolB12 / avoid triggersOngoing80%
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Hanna2.5119981999fibrochemical and food sensitivities, O.IGrounding/ diet09/2012ongoingO.I, GI tract10-15%22.5whith wheelchair for outside,but with grounding, able to walk bare foot on grass.
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xrunnerbetween 4 and 6 (maf314 and hypoth. drag energy levels down)120042006Multiple Chronic Infectious Disease Syndrome(a) chronic flu-like; (b)wired and severe insomnia.AntibioticsDoxicycline, Amoxicillin, Rifampin together with Minocycline (not all together)01/200912/2009 ca 5months in all(a) 70%, (b)80%20-30%122 months1.5
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heapsreal7-8, can drop with poor sleep or overdoing it down to a 43 or a 4 but had periods of being almost bedrriden for a few days to a week, coma sleeps i suppose and this was mainly in the early days20022006 by a proper doccmv, ebv, lymphocytosis, poor nk function, neutropenia, low dhea and free testosteroneinsomnia and PEM, has changed over the years as brain fog( a physical sensation of cottonwool head) has lessoned but memory getting worsefamvir cmv/ebv, zopiclone or zolpidem for sleep, dhea, antioxidants, doxyxcycline chronic sinusitismain treatment famvir2008? but was off and on it, been steady on famvir for last 2 years, 2010-2012ongoinggeneral symptom improvement, lowering of lymphocytes, gone from a 4/5 to a 7/8from a 40-50% to a 70-80%, was struggling to work part time with alot of bed time to now maintaining fulltime but still taking too much sick leave but getting therework partime with bed rest when not workingnow working fulltime, occassionally some low level exercise, still need to rest/pace myself2yrs for av's but definately need other treatments like sleep etc for this improvementsleep meds, antioxidants, dhea for adrenal fatigue, antibiotics sinusitis, low carb diet
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Justy41DetoxMethyl B12 injOngoing143Selenium v.helpful
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Taniaaust13019971998?POTS, hypoglycemia1. POTS 2 InsomniaDetoxB12 Hydroxy injOngoingMolybdenum v.helpful
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ahimsa2 to 4119901995NMH, endometriosis, migrainescan't maintain upright posture, heat intolerance?midodrine, fludrocortisone, salt tablets, potassium (Rx), extra water or rehydration drinksongoing
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