Discussion in 'Fibromyalgia Main Forum' started by jjoys, Mar 24, 2007.
Anyone have any stories of people getting over CFS/FM?
I see no-one is breaking down the door to answer this. It's discouraging not to be able to wave our hands and say yeah!! I know!!
Hmmmmmm.. I've heard stories..
Most have been from people peddling snake oil or this or that new cure. Who knows if they ever had it to start with.
I know a lady that comes to this site who is in remission. She had her own protocal she followed.
I personally, don't know anyone who truly had cfs/fm getting better.. but I've heard stories...
I have to believe that we are going to get better. I have to believe that they are going to find a cure or at least a treatment that will help us.
I wonder if it's kind of like believing in Santa.. Yes Virginia, there is a Santa claus...
I need to believe we can get better, but personally I don't know.
sorry not much help...
We always need hope.
LOL I hope it improves sometime.
I was talking to my neice and she has had it since '84.
Thats a long time!
We can hope!!!!
You might be interested in a new treatment that looks very promising, and I'm not selling anything.
The new proposed treatment for CFS is based on the Glutathione Depletion--Methylation Cycle Block hypothesis for the pathogenesis of CFS, which is based on the work of S. Jill James, Amy Yasko and other autism researchers. You can read about the hypothesis here:
The treatment includes B12 as well as active forms of folate, and some other things. There is a thread here on ImmuneSupport called Methylation Cycle Protocol Experiences and Progress, on which people are reporting their experience with it. This thread has the highest number of hits here right now, not counting the permanent threads.
You can find the treatment spelled out here:
You can also get more information on how it's going for others by joining the cfs_yasko group on Yahoo groups and/or the discussion group at http://www.ch3nutrigenomics.com/ , particularly the "Parent and Adults" topic
Rich Van Konynenburg
I'm going to bump up a thread from a while ago, called something like
Have you heard of CFS patients getting truly well?
pls do a search under the names of these people, who all say they recovered and have left the board.
Stormyskye, MATN, Elsa.
Also, check out Rich Carson's various testimonials. He is the founder of this board. Works full-time now after 17 years of disability.
he usually posts under the name moderator. Try searching under :My mercury treatment/protocol.
Also Alex Barton wrote a book called :CFS: 50 stories of recovery. Think it's available off the web somewhere.
I have been sick 10 years. Now back working freelance again after 2 years of unemployment. I'm using Rich Van Konyenburg's protocol as mentioned above. Seems to be working for me.
I have heard very few reports of people getting well, most of the reports I've seen were from men and young people. However, I do believe that one can get better, sometimes I think it happens as the illness runs its course (I firmly believe in Cheney's idea of CFS in three stages as it has been my experience). In the third stage, which I feel I'm in, the active symptoms have pretty much abated and you're able to function within certain parameters though the illness has left its mark on your system.
I also think people get better through finding healing treatments that work for their unique condition. My experience is that different treatments work at different stages of the illness. Some treatments I couldn't tolerate in the beginning or had no effect, at later times were quite helpful.
I've not given up hope to be "cured," but I have changed my definition of what it means to get well. After having been so sick for so long, I'm grateful for the improved quality of life I have now even though it's no way near what my life was like before CFS.
congrats on your improvement Delia,
I have encountered Rich Van (you know, whats-his-name sorry about my brainfog Rich) a few times before on the internet and he seems to be one of the very good guys for sure.
I was trying to read up about the protocol from the links in Rich's post above but with my brainfog its way too complicated, and so quite impossible for me to follow.
I was trying to raise my glutathione levels before after reading some of his stuff here:
So my big question Delia if you have time,
is please can you tell me how do you manage to follow the protocol yourself and how long have you been doing it?
I mean do you get any help and advice to help you to follow this protocol or you just muddle along on your own?
what improvements have you noticed? sorry thats 3 questions
I muddled along on my own with the glutathione depletion thing until I stopped buying the suppliments I was on for it after quite a while of trying, being broke now and not at all sure if it could still be working with all my pain meds I have to take and I really couldnt cope without them, not unless I was guaranteed the pain would go away after a few weeks.
The other thing I have to say that I feel is important is about our remission periods, because I have been sick for 11 years, and after I received an inheritance I was spending literally hundreds of pounds on complimentary therapies for two whole years, I tried everything thats real, including homeopathy, herbs, hands on healing, aromatherapy, "foot massage"(-sorry brain fog I forget the proper name of that one-) and I sustained most of these therapies weekly for around two years.
I am pleased to be able to report that I DID have a wonderful period of remission which lasted for nearly 3 blissful years,
but of course I then stopped nearly all of the therapies and I wasnt pacing and taking proper care of myself like I used to;
I was in denial for sure-
so then I had a major relapse after trying to work part time (despite increasing symptoms) for around two years.
That big relapse was about six years ago, and since then I have been just as sick as I was before, I wonder if perhaps it was my own fault for pushing myself too hard?
But maybe it was not my fault after all, because although I beleived at the time that the complimentary therapies probably might have lead to the remission, I cant try to repeat it because I really cant afford them now,
and I have come to understand that this is often an illness of remission and relapse, and therefore my remission and relapse quite likely could have been purely coincidental.
In retrospect we are all wiser, and my guess is that the remission could well have happened anyway, so it all depends how wealthy you are; whether you want to gamble and try out some sustained complimentary therapies for yourself; but most of us are too sick to work, so finding that sort of money is a real problem.
I do have a Reiki mastership now, (hands on healing and yes it is real); I reached level three teaching and practice, so I can do my own Reiki healing on myself, I do think it helps me quite a bit;
but of course it cant cure me,
after all if it was a cure then we would ALL know about it already -right?
check out Dr. Susan J. Shlifer - she is offering us more hope than anything else we have checked out - It seems to us, as parents of a suffering child, that so many of the protocols are at opposite ends of the spectrum as far as what to take and what to avoid....when we meet with Dr. S in April, we will have the opportunity to meet with current/past patients who have used the MP - including Dr. Shlifer herself - we are hoping that gives us more reassurance in having TJ use the protocol himself.
I am a mamma bear - I will never give up hope of finding a cure for my son!
I got this first in 1978, when I was young. All I did was rest(no choice, no help from doctors, and couldn't stay up for long), and gradually got better and better (3-4 years?) until I thought I was cured. I really was in remission, probably 80% of what I could do before, but I was really pushing myself to the limit before I got sick.
I was in the state of remission for a few years, at least 3, and then got very sick (unrelated) which put me into relapse. Since then, I've had the relapsing, remitting sort of illness, usually getting worse in the winter, and some years better than others.
So, maybe if I'd never gotten the other acute illness, I would've been 'cured' long term? Impossible to know, of course.
Nofool posts that those who went to Goldstein were cured, but talks about them going back every year for meds. So, I'm wondering if that means they were in remission as long as they took the meds? Or were some cured, and others on their way--I couldn't tell by his wording.
I'm hopeful that getting to the root cause(s) of this will result in a cure--like the methylation block, kelating heavy metals, and zapping the weird viruses. If there's a genetic component to this, the cure would need to be on hand for any reoccurences.
Lisapetrison started a thread: Have you heard of CFS patients getting truly well?
Your post was headed: Heard of several hundred, met many
Your comment: All were Dr. Goldstein's patients. Met some in his office whom were there for their yearly, or twice yearly appointments for their meds. I was one of those who would see him about 3 times a year.
Some got well in as few as 2 appointments. Some only one.
I'd be happy to get a clarification of this statement, since obviously it stuck in my mind.
Were those several hundred truly well as long as they continued the treatment? Is that what you meant?
Ok, I just reread your post, and that is what you meant. Thank you for explaining. It's all about the wording. Does truly well mean cured? Apparently not.
[This Message was Edited on 03/25/2007]
I have been sick for years. I have three daughters that are doing all they can to get though another day. I have never met a person that really got better. working with our doctors we can get by with meds. My hope is with the study the National CFIDS Foundation. Real work is getting done, they are not wasting money ( 4 million) to let the public know we have Chronic Fatigue. They could not even get the name right with the $4.
You want hope , a test,a group working for a cure check out http://www. ncf-net.org. The blood test will only work if you have CFIDS. You can get information for the test on line, it is called 'Ciguatera Testing' Protocol. You can read the Memorial List all so.
Take it one day a time.
[This Message was Edited on 03/25/2007]
That sure is what I pray for every day.
will reply later. .. on a deadline right now.. hope I can help you with this.
ARe u in the UK?
I am in the uk, and whenever you are ready I will be grateful,
and do by all means start a new thread up for your reply if it is considered bad form to tell me on this one in some way.
(I am a bit confused about the rules)
Separate names with a comma.