- Messages
- 8
I'm throwing this on here because I've searched online twice a week for six years, hoping to find anything to slow my disability. I've lost more strength and energy every year, until now. I'm at a point where I can only stand up for a few minutes, can't walk farther than the end of my driveway, and no longer drive myself: BUT I am finally, FINALLY getting better, not worse. I wish I could tell you what, specifically, in my regimin is helping, but like so many of us I take handfuls of supplements and meds every day. Most likely to be causing my improvement: Arteminisin i.v. once a week and daily oral; Curcumin i.v. once a week and daily oral; low-dose naltrexone daily; daily Valcyte. What I've tried that slowed my decline, but didn't reverse it; hyperbaric oxygen dives for almost a year; i.v. Glutathione, Myers cocktail, vitamin C; supplements of ATP and a dozen other things.
Of course insurance doesn't pay for any of this except the Valcyte; I've found naltrexone for a buck a pill, and the rest is hella expensive and I just suck it up and pay it, grateful every day that I can cover it for another month. If you can just try the Arteminisin (also called artusinate) and Curcumin (derived from turmeric, the main spice in curry), DO IT. Mega-doses. Honestly I don't think the oral stuff helps even a fraction of what the i.v. does. Arteminisin is an anti-malarial that they're finding targets a wide range of things; Curcumin is a super-potent anti-inflammatory; Valcyte works against herpes 6, which is a "silent" virus found in many CFS patients; and Naltrexone is a very, very tiny dose of an opoid that clears brain fog, depression, and lack of motivation.
I've been sick for so long that it took a month or two to realize I was improving - suddenly I was asking friends over again, or wanting to organize or decorate a corner of my house, or cooking an egg. Big stuff for me! And just now, the most exciting thing of all, I realized that I didn't have to lower and raise my body with my arms helping to use the loo!! That sounds stupid, but it's been demoralizing that muscle weakness had robbed me of the ability to do something so simple as use the toilet. The deterioration of muscle has been the most bothersome and intransigent symptom I've had, and even just to stop it is thrilling.
So there you go. Everyone is different, I have no idea if my regimin would help others, and I can't even say if it's a synergy between these things and the 20 other things I still take. I will say though that these are all cutting-edge CFS treatments easily googled. Feel free to ask me any questions, and my best wishes to all of us walking this difficult path.
Of course insurance doesn't pay for any of this except the Valcyte; I've found naltrexone for a buck a pill, and the rest is hella expensive and I just suck it up and pay it, grateful every day that I can cover it for another month. If you can just try the Arteminisin (also called artusinate) and Curcumin (derived from turmeric, the main spice in curry), DO IT. Mega-doses. Honestly I don't think the oral stuff helps even a fraction of what the i.v. does. Arteminisin is an anti-malarial that they're finding targets a wide range of things; Curcumin is a super-potent anti-inflammatory; Valcyte works against herpes 6, which is a "silent" virus found in many CFS patients; and Naltrexone is a very, very tiny dose of an opoid that clears brain fog, depression, and lack of motivation.
I've been sick for so long that it took a month or two to realize I was improving - suddenly I was asking friends over again, or wanting to organize or decorate a corner of my house, or cooking an egg. Big stuff for me! And just now, the most exciting thing of all, I realized that I didn't have to lower and raise my body with my arms helping to use the loo!! That sounds stupid, but it's been demoralizing that muscle weakness had robbed me of the ability to do something so simple as use the toilet. The deterioration of muscle has been the most bothersome and intransigent symptom I've had, and even just to stop it is thrilling.
So there you go. Everyone is different, I have no idea if my regimin would help others, and I can't even say if it's a synergy between these things and the 20 other things I still take. I will say though that these are all cutting-edge CFS treatments easily googled. Feel free to ask me any questions, and my best wishes to all of us walking this difficult path.
