CFS: Anyone Improved after 15 yrs?

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 7, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i am having a rough time and am trying to find people who have improved significantly (especially in the cognitive area) after beginning treatment after many many years of the illness.

    is anyone like this out there? i need hope...

    thank you very much,
    sue
  2. mindblower

    mindblower New Member

    There are a few treatments that have produced in me some symptom improvement, cognition included, listed in my profile. I can't recall for sure if you've tried similar things.

    Then there's my recent post if you check with a direct-immediate link to a free preview of Dr Goldstein's book, Tuning The Brain. There are likely things in this book and his tool kit for ME/CFS that your typical doc may not have thought of trying in you to reduce symptoms.

    Also and this may be getting out there for some, but it has been used successfully for neurological illnesses as well as depression refractory(unresponsive) to other treatments. It's electroconvulsive therapy(ECT).

    Here's a link to an article about the most advanced and apparently very safe version of it:

    http://www.sciencedaily.com/releases/2008/05/080527091907.htm

    I've not tried any form of it myself, but this new safe version of ECT may be worth considering for ME/CFS treatment.

    MB





    [This Message was Edited on 12/08/2008]
  3. deliarose

    deliarose New Member

    Yes, I'm a veteran.. I stopped counting how many years a while back.. I am on yasko. coming up on the 2-year mark. Feel like a human being again, but it has been gruelling, maybe because I hit it too hard.

    I would say I'm 30-40 percent. It's hard to say. Even teh brain has improved.. although it was the last thing to really start coming around.

    There's just an ease in my body now.. hard to explain.

    cheers
    delia
  4. ladybugmandy

    ladybugmandy Member

    MB..thanks for the suggestions....

    delia...i am so glad to hear of the improvement.

    strange thing is, i always read that the brain fog is supposed to improve first but when i felt a little better, it was more in the energy dept.

    but i have declined again.

    i wonder what the odds are that my sick periods are die-off?...wishful thinking i know lol

    hope you both continue to get better...

    sue:)
  5. znewby

    znewby Member

    Any improve taking hormones after being ill a long time?
  6. Slayadragon

    Slayadragon New Member

    Delia, are you still getting improvements?

    Are you still getting a lot of detox symptoms?

    I wish I knew how much the methylation stuff is helping me.

    I have too many things going on to be able to tell.

    It will take a true miracle to pull it off, but someday I want to get Erik to try that simplified protocol.

    Then I'd have a better idea how well it might work above and beyond mold avoidance.
  7. ladude

    ladude New Member

    the guy who started the LA CFIDS support group has seen significant improvement, not 100% but much better and he but works full time and does things on the weekends, maybe even weekdays, not sure. But he has seen much improvement that past few years with the infra red sauna and especially the hyperbaric chamber. the chamber eliminated those terrible crashes.

    don't give up hope.

    LAdude
  8. deliarose

    deliarose New Member

    Yes & yes. It's kind of slow and steady. Detox is kinda below the radar.. but I"m thinking of kicking it up a notch. Most recent methylation panel shows the cycle is still blocked.. so still have a long way to go. But I'm transformed from what I was when I started this.
  9. PVLady

    PVLady New Member

    Yes I have improved. What helped me the most was taking in more protein in the form of a daily protein drink. There are many excellent brands in health food stores. I added another supplement called "Miracle Reds" which is a powerful antioxidant from fruits.

    I read a book by Dr Daniel Amen called "Change Your Brain, Change Your Life" He recommends among other things antioxidants from fruits and vegetables. The Miracle Reds helped me with that.... I used a protein drink called Gold Standard.

    I started doing these things about 6 months ago and it is the only thing that really helped me start getting better..
  10. stschn

    stschn New Member

    As I've said before I have had cognitive improvement on Valcyte. I can balance our check book and even found an error that my fellow a Stanford grad had made in it. I can now deal with my IRA without Phil haveing to walk me through it. My directions are better in that I no longer confuse my left and my right and I can remember where places are in my small town. I don't get as up tight when rideing in the car bright lights and loud noice do not bother me as much. However I still can't spell well and I often have trouble with words either remembering them of pronouncing them when I am reading. So clearly I'm not 100% but I do think 70 maybe 80% improved. Please don't feel that I am too hard on you but I often wonder if Doctor Learner doesn't tell people as Doctor Montoya does about the danger we face when we over do. For most of us it always leads to a relaspe. I had read that Dr. Lapp says that each relaspe does enough damage to the body to make recovery that much harder so I asked Dr. Montoya (of the shattered vase theory) if he felt that way as well. He said yes there seemed to be truth in that statement. So why are you painting a bathroom? You're already working your body so hard because of the work and travel that you have to do. I know how contrary to the personality of most of us that doing nothing is. But I do believe that it is our best shot for getting any improvement. After my last relaspe I feel like the alcoholic must when she hits bottom. I will not over do again because it just is not worth it.