Therapies for long term CFIDS sufferers?

Discussion in 'Fibromyalgia Main Forum' started by michella, Oct 23, 2005.

  1. michella

    michella New Member

    Are CFIDS therapies to reverse damage or the illness itself that worthwhile in patients who have been ill 10+ years? I realize that no CFIDS therapies can claim to reverse damage or the illness itself. I'm just looking for some personal opinion.
  2. busybusymom

    busybusymom New Member

    I think the therapies that are out there (which I am always looking) are provided just to MANAGE our illness. I've been sick 5 years with CFS.

    Honestly, the only therapy that has worked for me is IgG injections and IVIG (intravenous gamma globulin - mega doses of it). I am currently getting the injections twice a week - will be getting 10 ccs tomorrow, and the rheumy I am seeing is trying to find the IVIG - it is in short supply right now. I find that I don't get sick as often, my stamina/endurance is greater, and I feel somewhat more "human." It is NOT a cure because your body uses it up and it literally runs out, like gas in a car, and my body becomes more fatigued and I have no stamina for anything, and feel like I am back to square one. The only negative about gamma is that it is EXTREMELY expensive. Thank God I have insurance to cover a portion of it. If I couldn't get the gamma, I have no doubt I would be flat on my back on a regular basis.

    My rhemy also suggested Plaquenil. He says it is an immune stimulant and thinks it would help for the energy part. Because my CFS is due do an immune deficiency, he has suggested this. I posted a question about it today. Not sure if I will go this route.

    I hope this helps somewhat. Otherwise, I have found nothing else that works - even vitamins don't seem to really help.

    Interestingly enought, both my brother- and sister-in-law had CFS years ago. They both had it for a couple of years and have since resolved. I know they didn't do anything "special" - my b-in-law told me recently he started exercising very slowly after two years of being sick, and he gradually got better. It's hard for me to believe that exercise "cured" him, though. I don't know - maybe their immune systems are stronger than mine (and yours, and many others) or maybe they deal with stress better. I have other medical problems that I think compound the disease, and I believe they were only dealing with the CFS.

    Jennifer
  3. michella

    michella New Member

    Thank you for writing me back! Now intravenous gamma globulin (I had to copy-paste that) is something I have not tried. That is interesting that your brother and sister-in-law also had CFS. When they were ill were you around them much? Have you heard about the theories of CFIDS being contagious? And about the genetic links? I ask because both me and my dad have CFIDS. Also in regard to your family recovering, I've read that the way that we care for ourselves at the onset can make a dramatic difference in the future outcome of the illness. So, if we push ourselves to keep up our previous level of activities the illness severity and longevity may increase. Whereas if we acquiesed to our illness when it first CFS first reared up and listened to our bodies with lots of much needed sleep/rest,nutrition,lowered stress level,ect... then we would have a better likelyhood of recovery. It's a theory anyway. Of course their genetics and current state of health no doubt helped them to handle cfids and beat it off. Although the other day I was reading one of Dr. Bell's newsletters and he was talking about old patients that recovered only to have a relapse years later. Oh my, when I get started I do ramble about theories. I'll have to look into this gamma globulin stuff tomorrow. 10 years and I still can't help getting excited. Have you read the new Paul Cheney article? I just read it. Totally fascinating. Sorry I talked your ear off. I'm used to glazed or quizzical looks when I ask hypothetical questions or bring up health problems!
  4. LittleBluestem

    LittleBluestem New Member

    I have just recently realized that I most likely have CFS, and have had for years. I am still trying to find a doctor. Even if the therapies are not as successful in long term CFS, I think treating is better than doing nothing at all. If nothing else, at least you will get worse more slowly.