Remissions and recoveries...

Discussion in 'Fibromyalgia Main Forum' started by isiselixir, Jul 26, 2009.

  1. isiselixir

    isiselixir New Member

    Does anyone know what the recovery statistics are for CFS and/or ME?

    Does having remissions play a role in this? Do more people with remissions make a full recovery than without or vice versa?

    Even if you don't know the stats, I'd like to know your thoughts on remission and recovery in CFS and/or ME. Feel free to share any remission stories too.
  2. shari1677

    shari1677 New Member

    I wish I had something to contribute to this threat, but I dont. I was diagnosed about 5 years ago, was doing fine until a relapse in October of 2007 at which point I was bedbound for 6 weeks. I have never fully recovered, though I am able to move about. I live in my pajamas and rarely leave the house.
  3. isiselixir

    isiselixir New Member

    I am so sorry for what you are going through since your relapse. What was it like for you prior to that - what was your level of functioning? I got sick in Fall 2006 (at age 28) and gradually but quickly became mostly housebound with severe CFS for 17 months. Then I had a remission which I thought was a FULL recovery but it only lasted about half of 2008 and the other half I started to come down with fatigue and other symptoms but this year it is full blown. This illness is so cruel. I also don't leave the house very often. I hope you have some emotional support and people who can help you. My heart goes out to you.
  4. ladybugmandy

    ladybugmandy Member

    hello. i have heard several stories of people recovering. some say they recovered on a diet, antibiotics, antivirals, ampligen, etc.

    usually, people who recover completely are those who were treated relatively early but others sometimes improve a lot.

    i don't think looking for stats at this point would be of any use because the treatments are new and knowledge is evolving very rapidly. most websites have stats that are no longer accurate.

    since you have had this only a few years, you should really see a CFS specialist and see if you have treatable infections! (ASAP!)

  5. isiselixir

    isiselixir New Member

    Well I was tested within three months of my symptoms for many things including EBV, HHV-6, lyme, thyroid, etc. and all came back negative.
  6. ladybugmandy

    ladybugmandy Member

    was it antibody testing? can you share your results? did you have lyme testing at igenix? did you test RNase L activity at Redlabs?

  7. cfsgeorge

    cfsgeorge New Member

    According to Dr David Bell's book, remissions and relapses(days, weeks, months, years) are common in people who have the acute infectious onset type of CFS as opposed to the gradual non-infectious onset type of CFS. He says the acute infectious CFS group has a better chance of recovery than the gradual non-infectious group. Further, he says the more remissions you have the better your chances of full recovery. His definition of remission is normal to near normal health. Again, he says remissions are random and can last anywhere from days to years.

    As a PWC that is of the gradual non-infectious type, i have never had a remission or a day of normal or near normal health. bummer!

  8. jasminetee

    jasminetee Member

    cfsgeorge, this is interesting: "According to Dr David Bell's book, remissions and relapses(days, weeks, months, years) are common in people who have the acute infectious onset type of CFS as opposed to the gradual non-infectious onset type of CFS."

    I had an acute flu infection in 1985 which kicked off my Odyssey with CFS. I now suspect it was Mono as I heard the test isn't accurate and I'm sure it was caused by the EBV.

    I gradually went further and further downhill until I was completely bedridden within a few months. I remained that way for the next 7 months or so.

    Eventually I was able to exercise more and more every few days and then I was able to go back to college, get my degree, teach and play hard for 11 years. I looked fine to most people but roommates I had along the way would say, "You're sick all the time." To them I was. They had no idea how much pain, mostly digestive, I was dealing with though.

    They just saw that I caught flus all the time and Strep throat a lot. In retrospect, I shouldn't have been working with kids.

    I sprained my back in 2000 and developed severe FMS. I also went into perimenopause that same year and my CFS came roaring back. It wasn't the same as when I first got it but similar. In both cases I had almost every symptom listed pretty much daily. This time though, my glands didn't swell up like golf balls and I didn't have some weird lump under my left ear like I did the first year with CFS.

    I figured I could get better again like I had in the past when I was 20. Now I had the Web and tons of info and things to try and I did. I did just about everything I could try and spent many thousands of dollars on treatments and worked with several specialists including Dr. Rosenbaum a CFS specialist.

    They were unable to help me except Rosenbaum got me doing Psyllium which I still have to take daily or I'm really in dire straits.

    Valcyte for 7 months in 2007 made me much worse and I feel like just this week I'm finally regaining some strength. This has occurred after riding my bike some. I can't do it very much though.

    Overall, I slid way downhill after 2000 and have ended up being bedridden about 95% of the time. Right at this moment, I happen to feel pretty good compared to how I've been these last few years. But it's Summer and Winters are much harder for me.

    I plan to damn the torpedoes and continue to try to exercise. It got me out of this once. I know people here say that means I never had ME but I disagree. I think we're all different in how we respond to things. I couldn't exercise at all during and after Valcyte up 'til now. And it does cause me to relapse but it also makes me feel better with circulation and I feel stronger each time I do it. I'm going very slowly.


  9. dannybex

    dannybex Member


    "For each year of illness through year 15, both sudden and gradual onset cases had similar recovery probabilities. Thereafter, gradual onset cases had higher recovery probabilities, but these differences were not statistically significant. Patients reporting recovery and those remaining ill were similar demographically."

    So, I guess it depends on who you talk to, etc..

    I also have gradual onset, but even some who report 'sudden' onset, when asked more questions about their history often conclude that there were other issues that 'gradually' led to the 'sudden' collapse.

    Personally, while I'm not recovered, and have had ups and downs, I know about 7-8 people just in my local group who have recovered anywhere from 70-100%. Four of them have been completely well for a minimum of four years. One has been well for almost 9 now. So that keeps me going, even when I want to give up.

    For a great recovery story, google "Martha Kilcoyne". I think there may even be an interview with her here on ProHealth.

  10. cfsgeorge

    cfsgeorge New Member

    teejkay- i have a childhood friend who is a physician now that had severe mono during his college days over 20years ago. He was bedbound and housebound and lasted 6months before he fully recovered. He does not have CFS but is well aware of it because of his chronic mono. I've never had mono or the symptoms of a mono infection. Almost everyone contracts the mono virus or EBV sometime in their life, but most do not show any symptoms of it because of their healthy immune system.

    Your CFS onset is a bit unique although not unheard of. Others have reported contracting CFS after many years or decades of being "dragged down" by "it." However, gradual onset CFS is usually seen in terms of a few MONTHS not days, weeks or years. Personally, CFS slowly disabled me over 3-4months.

    I would highly recommend you read Martha Kilcoyne's "Defeat chronic fatigue syndrome" before attempting any exercise program to push through your CFS. Exercise and the resulting CRASH/PEM/DPEM made my CFS much worse. The golden rule to remember with CFS is DO NOT DO ANYTHING TO "CRASH" OR PEM/DPEM YOURSELF! You can never recover or allow your body to heal if you keep crashing yourself. yes, i learned this the hard and painful way. Being a fitness freak for over 20years did not help me in this case!

    Dan- Why would anyone who recovered from CFS for so many years keep going to support groups? I understand people want to help others, but CFS has been such a nightmare for most of us that i'm sure most would not want anything to do with CFS once we are recovered and living a full life again. personally if i recovered, i would share my story of recovery online, answer questions for a week or so, and disappear from the CFS nightmare forever.
  11. isiselixir

    isiselixir New Member

    To answer your questions, no it was not antibody testing, I don't have my results because it was so long ago, and I didn't get lyme tested at igenix or get tested at Redlabs for RNase L activity. Personally I am not at all worried about lyme because I really don't have the symptoms for lyme disease.
  12. isiselixir

    isiselixir New Member

    Thanks so much for this info.

    I must be an anomaly though because I had a full remission where I went back to 100 % health but I had a gradual onset with no acute infection very similar to you, it was like 3-4 months onset. My remission in FULL health only lasted about six months and then started declining. I am sorry to hear you have never had a remission since you got sick. I was hoping and thought that my remission was a recovery but it wasn't.
  13. TigerLilea

    TigerLilea Active Member

    Dr. Martin Pall feels that people with ME/CFS who exercise (not enough to cause PEM) are much more likely to recover than people who do not exercise. He feels exercise is an important component of recovery.

    I always feel mentally better when I get some exercise on a regular basis. I find when I go for long stretches without doing anything, that is when I find myself becoming mentally slow (what people call brain fog).
    [This Message was Edited on 07/27/2009]
  14. cfsgeorge

    cfsgeorge New Member

    A remission for 6months is to die for! Lucky you! I would do everything on my "to do list before i die" if i ever got a chance at remission. I can dream?

    I would highly recommend you read Dr Bell's book, A doctor's guide to CFS, b/c it best answers the prognosis and symptoms of CFS better than anyone else with really useful charts, graphs, and summaries. His book gets an A for explaining CFS, but also gets an F for treatment as with most other books about treating CFS. His newest 2007 book, Cellular Hypoxia and Neuro-Immune Fatigue(very scientifically intensive not the the laymen though), also gets an A for explanation and a big F for treatment.

    So why read these books if the treatment is a F? It puts your mind at ease when he explains the who, what, where, why, and how's of CFS!
  15. isiselixir

    isiselixir New Member

    I can tell you that having the remission makes you love every minute of life, including the mundane stuff like tying your shoes. I felt good just breathing! That is the first thing I noticed, I could breathe really well.

    If I get SSDI/SSI I will buy lots of CFS/ME books, but for now I am broke. I did look up Dr. Bell and was elated to find that he has his own website! So I will be reading his Q and A and more on there. :)
  16. dannybex

    dannybex Member

    Totally agree -- Martha Kilcoyne's book is fantastic...very inspiring, and very easy to read for even those with a lot of brain fog.

    I don't have my post in front of me, but I don't think I said those who had recovered are still coming to our support group. We do hear from them from time to time, and I've met some for lunch during the past year. The one's that post from time to time are the ones who are around 70-75% recovered and have kind've hit a plateau.

    Which brings me back to Kilcoyne's book. She RAN from CFS...for 10 years...before writing her book. Totally understandable. :)

  17. cfsgeorge

    cfsgeorge New Member

    isiselixir- the public library(LA county at least) has many of the CFS books(Bell, Tetielbaum, DeMerlier, etc). you can order books online and have them delivered to your local libary free of charge. all you need is a $3 library card and a computer. you can even order up DVD movies for free!

    Again, i'm so jealous of your remission. hope we will all get it or get it again!

    dannybex- martha's book was the first CFS book i read because i was so sick at the time that i could not read anything else more detailed or "huge" like osler's web. It turned out to be one of the best books on treating CFS and alot of it is just good common sense we all seem to have ignored. Her book basically saved me from getting worse and worse by self induced and doctor induced GET causing the awful CRASH/PEM/DPEM for months!!!!!!!!!!!!!!

    When i do run from CFS oneday, i will never look back!
  18. jasminetee

    jasminetee Member

    See how it is! lol It all depends on what you happen to read. Actually, I've read both of what you're referring to and all kinds of other opinions over the years as I know we all have. I only know what seems to work for me.

    Actually, as someone pointed out above, my situation is that I had major digestive probs all my life even as a toddler and I used to pass out as a toddler. But I mostly outgrew my dizzy spells and food sensitivities and my inability to handle carnival rides and then I was hit with EBV in the prime of my life at 20 and became bedridden and sickly like I'd never been before. I was never sick much growing up yet I did have the growing pains and chest pain that feels like a heart attack as a child. All that was gone when EBV hit too. The doctors have always said I was so healthy!

    I've come across many CFS stories that are exactly like mine regarding getting EBV at 20. It may be more uncommon here on this board but many people with Blogs and in Chat have recounted my same experience.

    I was able to exercise more before I started Valcyte in 2007 and I believe it helped me much more than hurt me. During Valcyte and up 'til now I've rarely been able to and really the only exercise I can now do is ride my bike although I'm planning to try to swim again either this summer or next.

    This week I got on my bike 3 times. I do have PEM and much pain after I ride but I also feel so much stronger overall and this lasts whereas the PEM fades. I am finally feeling like I'm getting my strength back after becoming extremely weak. I have been bedridden 95% of the time these last few years.

    I first got a workout last June, a workout for me that is as I was finally able to go through 30 boxes of school supplies in my garage from my teaching days. We're going to donate them to a New Teachers program in our town.

    Then my cycle happened which is when I know to stay in bed now for weeks and then this week I'm at a point where I've been able to ride. I've been in bed so much over these years and have had almost everything done for me, brought to me etc.. and I've gotten so much worse. The flus I've gotten have affected my lungs like never before, seems like pneumonia for the first time in my life and I've felt close to death so often I can't believe I'm still here.

    Getting out on my bike has given me so much joy. Just seeing the people and the water and the sky and trees and flowers. It's all flat where I live and we have a long bike path along canals that is totally sheltered from the wind. I take it very easy and slowly.

    My circulation feels better, my lymph system feels good for a change, my breathing is way better, (I was very breathless from the damage by the Valcyte) and I feel so much stronger. I am in terrible pain and still sick but better than I was before.

    I'm still mostly bedridden. My laptop is on my tummy right now in fact as I'm flat on my back.

    Thanks for your thoughts and concerns. That means a lot to me.

  19. place

    place New Member

    I am on a lot of meds and it took a ton of tweaking from My doc. and a whole of trial and error with crazy suggestions.

    I was on Doxy and could not get off or I would get more flu like stuff and relaps symptoms. BUT I also had sinus issues.. I flush my nose out and if I get infection stuff out, I feel 100% better. NO Joke. It is weird, I know.

    Anyway, someone told me to but a little bleach in my saline.

    Oh my goodness, after the first time, It's like I could deeply breath through my nose! Long story short, I was able to get of the doxy the next week. Have not been back on it since!

    And don't get me wrong if I have a busy week and no down time, I do crash. But I am happy to have my life back 75%.

    As to why I still come here.... I am looking for a cure or a way that I do not need to take so many damn pills to function or only drink Disani water.

    And maybe a long the way I can help someone get one step closer to a recovery.

    It took nearly 3-4 years and a great doctor who was willing to check each symptom and try 20 treatment options for each one. You need a Relentless doctor.

    It is possible to recover but its a hard, expensive and frustrating road to travel.

    Good luck everyone!
  20. gapsych

    gapsych New Member

    Are there any doctor's who follow Dr. Goldsteins treatment protocols?

    I know you had once said that he had written a book which is very complex. Have there been other books, more for the layperson, that describe his theories and practices.


    [This Message was Edited on 08/03/2009]

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