Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Sue B, It is really difficult for me to think that way. People who have CFS know what a disaster it is and I am sure they would like to help other sufferers. They should have records somewhere or they should have some friends who would report us they have gotten well but unfortunately we don't hear much about the people who have gotten well. I heard that there were some people who got well by alternative treatment methods but I could not find any info on them either.We are about 800 people here on this list if I remember correctly. Doesn't any one of us know anybody who got well? I wonder if there are not many recoveries or if somehow we are unable to reach them. Thanks Nil improvement | Dear Carol, | | You ask, " Has anyone gained substantial prolonged improvement?? " | | Sure. But they're not online anymore. Too busy. | | Sue B. | upstate New York | | | This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Nil, I have posted that I am about 80-90% functioning. I still take Zithromax and supplements every day. Is that well? Why do I hang out here? I spend a few minutes most days on an email list for cfs because I care about other people. Also the science fascinates me. Also I try to make money on biotech stocks. I just spent 4 days in NYC running to catch trains, walking, etc. I am tired but doing okay. Does anyone get WELL? I know people like me who are working and functioning, but they still have symptoms. Some relapse badly. I also know some Lyme patients who have recovered. But who knows? a > Sue B, > > It is really difficult for me to think that way. People who have CFS know > what a disaster it is and I am sure they would like to help other sufferers. > They should have records somewhere or they should have some friends who > would report us they have gotten well but unfortunately we don't hear much > about the people who have gotten well. I heard that there were some people > who got well by alternative treatment methods but I could not find any info > on them either.We are about 800 people here on this list if I remember > correctly. Doesn't any one of us know anybody who got well? > I wonder if there are not many recoveries or if somehow we are unable to > reach them. > Thanks > Nil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Nil, I have been on the list a while and have recovered 95%. I owe my recovery to Cheney's basic protocol which involves hydroxy, mag. sulf, taurine injections, antioxidants, whey protein, etc. and more than one try of his experimental HGH/bgf protocol with the initial immune modulation with isoprinosine, pinextra, etc. then HGH + bovine growth factors over six month periods. Unfortunately, this protocol is apparently only suitable for those who are what Cheney refers to as stage 3 or stage 2-3 CFSers. We are the ones who no longer feel ill all the time but are very low on the functionality scale. Steve B. >From: " Nil " <ng2113@...> >Reply- >< > >Subject: Ynt: improvement >Date: Fri, 14 Feb 2003 11:31:40 +0200 > >Sue B, > >It is really difficult for me to think that way. People who have CFS know >what a disaster it is and I am sure they would like to help other >sufferers. >They should have records somewhere or they should have some friends who >would report us they have gotten well but unfortunately we don't hear much >about the people who have gotten well. I heard that there were some people >who got well by alternative treatment methods but I could not find any info >on them either.We are about 800 people here on this list if I remember >correctly. Doesn't any one of us know anybody who got well? >I wonder if there are not many recoveries or if somehow we are unable to >reach them. >Thanks >Nil > improvement > > >| Dear Carol, >| >| You ask, " Has anyone gained substantial prolonged improvement?? " >| >| Sure. But they're not online anymore. Too busy. >| >| Sue B. >| upstate New York >| >| >| This list is intended for patients to share personal experiences with >each >other, not to give medical advice. If you are interested in any treatment >discussed here, please consult your doctor. >| >| Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 I tend to agree with Sue. When I was in remission for a few years I monitored the list messages somewhat just to keep up on new developments, but even did that less as I felt better and better. I was working full time, doing hobbys, hanging out with friends. In other words, I had a life and it took my time. It wasn't that I didn't want to help other people, but when you actually do become almost normal, it is amazing how quickly you forget how sick you were. Then there were the people that when I told them I was better, they said I must have never had CFS in the first place! The list isn't always kind to people who get better. Despite that, it definitely seems to me that every few months somebody says they got must better. I know that in the years I was " better " , nobody ever mentioned the fact that I had gotten better and was back into my life (as I said I monitored the list and even posted about the recovery now and then, and I would just get an occassional backchannel email about how I got better. Thanks, Doris ----- Original Message ----- From: Nil It is really difficult for me to think that way. People who have CFS know what a disaster it is and I am sure they would like to help other sufferers. They should have records somewhere or they should have some friends who would report us they have gotten well but unfortunately we don't hear much about the people who have gotten well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 I haven't thought this through very exactly, but I think it is better to be vague than silent. I'd say I have improved from say 45% to 85% over twenty years. It seems to be all from supplements, etc.When i realized I could have an effect independent of the MD, I sort of doggedly pursued one thing after another, and kept what worked. I take a huge number of them, and my improved state is extremely precarious in how much I rely on them. Small disruptions can crash me pretty far--into the state of just sitting and staring, and not being able to initiate action. My Dr. had already worked me through the yeast, via Nystatin mostly. There were many increments, and each was a bad die-off of about 2 weeks. Nizeral was far superior when I had it, but the Dr. wouldn't keep me on it for very long, Synthroid, was another long-term help that went went through many tiny increments, with a bad adjustment period for each. There were some kind of signs that I was allergic to my own thyroxin, so the synthroid was not just to bring the level up, but to displace my own with the synthetic. Prozac helped and I am still on it. The first thing I did on my own that made a difference was DHEA, lots of readjustments there too. A lot of things that worked had an immediate benefit, including ImmunePro, DL Phenylalanine, rhodiola. I feel like I am doing many, many things, each of which helps a little bit, including (get ready fot this!) coq10, culturelle, lots of Benadryl, dramamine, seriphos, zantac, l-glutamine, fish-oil. primrose oil, tumeric, green tea, ginseng, maca, alpha lipoic, l-carnitine, acetyl l-carnitine, IP6, colustrom. Astragalus, NADH, beta glucan, valerian, l-theanine, Larch, Holy Basil, Kava, olive leaf, melatonin, Mucana Pruriens. I have started Huperzine, which I will write about seperately. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Thanks so much for your detailed answer . It seems that we will have to be on supplements for life time. Could you mention me more about adaptogens if you have time and energy.I am looking for an adaptogen which will be helpful at later stages of the illness.(I am at about 30 percent functionality level) Did you make a concious search on adaptogens and selected the ones you have mentioned for some reason(maca,rhodiola,ginseng). Siberian Ginseng seems to be stimulating me.Korean ginseng is even worse than that. I am now thinking of trying ashwaganda. Any opinions on this will be appreciated. Thanks. Nil Re: Improvement | | I haven't thought this through very exactly, but I think it is better to be vague than silent. I'd say I have improved from say 45% to 85% over twenty years. It seems to be all from supplements, etc.When i realized I could have an effect independent of the MD, I sort of doggedly pursued one thing after another, and kept what worked. | I take a huge number of them, and my improved state is extremely precarious in how much I rely on them. Small disruptions can crash me pretty far--into the state of just sitting and staring, and not being able to initiate action. | My Dr. had already worked me through the yeast, via Nystatin mostly. There were many increments, and each was a bad die-off of about 2 weeks. Nizeral was far superior when I had it, but the Dr. wouldn't keep me on it for very long, | Synthroid, was another long-term help that went went through many tiny increments, with a bad adjustment period for each. There were some kind of signs that I was allergic to my own thyroxin, so the synthroid was not just to bring the level up, but to displace my own with the synthetic. | Prozac helped and I am still on it. | The first thing I did on my own that made a difference was DHEA, lots of readjustments there too. A lot of things that worked had an immediate benefit, including ImmunePro, DL Phenylalanine, rhodiola. | I feel like I am doing many, many things, each of which helps a little bit, including (get ready fot this!) coq10, culturelle, lots of Benadryl, dramamine, seriphos, zantac, l-glutamine, fish-oil. primrose oil, tumeric, green tea, ginseng, maca, alpha lipoic, l-carnitine, acetyl l-carnitine, IP6, colustrom. Astragalus, NADH, beta glucan, valerian, l-theanine, Larch, Holy Basil, Kava, olive leaf, melatonin, Mucana Pruriens. | I have started Huperzine, which I will write about seperately. | -- | | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 , if you don't mind saying, did you have to stop working when you were down to 45% and are you working now or if not, could you work? Based on all the supplements you are taking, it would seem to me that you are working or are independently wealthy! Mike C. > > I haven't thought this through very exactly, but I think it is better to be vague than silent. I'd say I have improved from say 45% to 85% over twenty years. It seems to be all from supplements, etc.removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 I know of a person who can't follow this list because of mental impairment. I think a big reason is that there is a lot of research related info. on this list as opposed to a message that says, " hi list, I tried supplement X and it really helped. " Posts such as the latest theory on cells not getting enough nutrients and why without giving any treatment would fall into this category. Not that the info. isn't informative, it just gets too technical for mentally impaired CFSers. Sue, also, the typical course of CFS for a large subset of us is to be really bad off for the first year or two, and then recover to a level where we can barely work, take care of ourselves, etc. BTW, whatever happened to Steve who was a professor in Missouri? I haven't seen a post from him in a long time. Mike C > > Hi, > > We often wonder what has happened to people who post for a while and > then disappear. Have they gotten too sick to post? Have they > recovered and are too busy to post? > > I've recently heard indirectly from a young woman who used to be on > this list about seven years ago, and at that point she'd been sick for > about three years, with a CFS diagnosis. I think at the time she > posted here she was going downhill, and eventually got to the point > that she couldn't ever leave her apartment, was in bed most of the day, > couldn't shower, had to have someone do all of her cooking. > > She finally stopped going to doctors, stopped taking supplements, > stopped posting on the internet. She gradually improved. Now she does > her own shopping and cooking, is up and about, cares for herself and > her apartment and even travels some. She doesn't know why she > improved. (So hang in there, everyone.) > > Sue , > Upstate New York > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2011 Report Share Posted August 4, 2011 Hi everyone, Glad to report an improvement snce I started with my new physio. The surgeon gave me a precription for more work on my knee as it wasn't bending well enough and was still getting swollen and hot. The physio was surprised that it was three months after the replacement but I picked him as I know he is quite strict. It has improved after only six sessions. I have weights attached to the heel and lift a little more each time. Up to four and a half kilos know. Its hard but I have increased the bend. He said he thought it was unlikely I would get the best possible but at my age and fitness thats ok. What is considered a reasonable angle of bend in the knee after total replacement? I am aiming for 110 degrees but can't kneel and it is still tender to the touch under the knee. I see the surgeon in 4 weeks to assess it. The other knee needs doing which makes things difficult but I don't want to think about having it done yet! judith Quote Link to comment Share on other sites More sharing options...
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