1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Do Remissions Give Us Any Clue That This is Treatable?

Discussion in 'General Symptoms' started by julius, Sep 12, 2010.

  1. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I will be celebrating my fifth year of being house/bedbound in November and I am really worried how bad I will get. I feel I am very fragile right now and anything could make me tip over. I remember someone saying that if you don't recover within 3 years of the illness, you will never recover. I hope they were wrong. My GP also believes that I will not make it back to the way I was.

    If you say that the worse is to come, I wonder how I will be able to survive and endure more of this.
    This is why sharing your story is so crucial for people like me. It is one of hope and new possibilities!
     
  2. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    Michael do you have any evidence of the approx 10yr theory followed by 2 yrs later the worst of the illness develops. This is important to me as my 16yr old daughter is doing well at the moment (8.5yrs with me), i would hate to think this was the calm before the storm!!
     
  3. Jenny

    Jenny Senior Member

    Messages:
    1,233
    Likes:
    200
    London
    Doesn't fit my experience, or those of many I know. I was at my best between years 14 and 22. And during years 22-28 I had several 6 month periods of 95% health.

    Jenny
     
  4. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    And how are you today?
     
  5. slayadragon

    slayadragon Senior Member

    Messages:
    1,100
    Likes:
    403
    twitpic.com/photos/SlayaDragon
    Do you know what happens with the immune system, that it can handle the viruses and toxins for a period of time and then collapses?

    I got a "precursor condition" in 1994 and ME/CFS in 1996. My system collapsed in early 2006. So I would fit right in with your description.

    Is that when your system collapsed, Mike?

    Thanks, Lisa
     
  6. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    ETA: Dang! Way too long again. :rolleyes:
    Summary: I think remissions suggest that many of us have high potential for full remission with the right treatment.

    Speculation Warning! For those who are uncomfortable with speculation... :Retro smile:

    I'm speaking just from my family's experience; this may not apply to anyone else.

    We have 3 PWCs in my extended family with somewhat different situations.

    My uncle had slow onset probably initiated by a flu-like illness contracted during a visit to Tahoe during the outbreak. His ME/CFS was mild-moderate. He could work full-time but do nothing else. He is now in complete remission after 8 years on antivirals (and 2 years off them so far).

    I had the classic sudden onset flu-like illness, recovered partially with several years of mild-moderate symptoms mixed about 60-40% with flares/relapses. With every relapse or illness (cold, flu) I got a little worse. By Jan of this year my condition was high severe/low moderate -- mostly housebound, couldn't do any housework without flaring, "napped" 3-5 hours most days just to function minimally. After about 6 mo of little improvement and some serious symptom worsening on Valcyte, I made a sudden turnaround and improving noticeably (by ME/CFS standards). I can see the possibility of remission over a number of years, but it's nowhere near a certainty.

    My daughter (at 12yo) had the same sudden onset flu-like illness about a week after I did. She appeared to recover normally, but had occasional very, very mild flares. She would have a bad flare with a cold or flu, the magnitude of the flare corresponding to the severity of the viral illness. It appeared we could reduce the length and severity of the flares with 4-6 weeks of the full Pall protocol. Dr Lapp diagnosed her in Dec 2008 with ME/CFS in remission.

    In early Feb 2009, at 16 yo, she got a chicken pox booster (live herpesvirus). She went into a bad flare from which she never fully recovered. Hasn't been back in remission for even a day since. She picked up H1N1 at college the following fall, followed it with pneumonia and was a complete mess by Dec 2009. From remission to moderate-severe in 1 year.

    Valcyte (starting Jan or Feb 2010) gave her a substantial improvement fairly quickly (6-8 weeks) so that she was functional in college with a minimum courseload of easy classes and living at home. After 6 months of Valcyte and LOTS of rest she's doing fine in college living in the dorm taking a minimum courseload of engineering classes. She is still very careful and rests a lot, doesn't do any more physical exercise than she can help. I can see remission for her again within the next year barring a catastrophe.

    So, I think remissions are possible for some patients. I'm not convinced the illness isn't doing some permanent damage. I think the young and the less ill seem more likely to achieve full remission.

    For my family, the clues about remission seem to be related to viral infections. Or perhaps more specifically, to the immune reaction to viral infections. My guess is that each viral infection stresses the immune system so that it either upregulates thereby spreading the HMRV infection (if there is one) or conversely, stresses an already taxed immune system so that latent infections can reactivate and do their own damage.

    I think periods of full remission are times when the immune system is managing to hold it's own, however briefly. This is good. Flares occur when the immune system can't handle the load and something -- HMRVs, EBV, Lyme, HHV-6 -- manages to reactivate.

    Some of us live on the edge, where our immune systems are sometimes able to push everything back into latency (or something like). My daughter was one of those before Feb 2009. I think those people have the best chance of full remission.

    Some of us have slipped over the edge and our immune systems never catch up. We live with chronic, possibly low-grade, infections that over time may do permanent damage. I suspect our immune systems may have even given up. We're likely the ones that get anything that goes around. I'm probably one of those. I pushed too hard early on and have spent too much time with something or other running amuck in my cardiac and nervous system tissue, I think. :sad:

    My uncle never got really bad. I think his immune system had trouble completely supressing herpesvirus infections, but was almost doing it so he may have only been suffering from the up-regulated immune system part. They may be the ones who don't get the colds and flus because their immune system is already running on high. I think they have a good chance at remission because their immune systems have kept the infections largely, although not entirely under control and so have not done much permanent damage.

    There's my speculation, based only on my family, about what remission means with regard to treatability. I kinda hope I'm wrong, since I don't see high potential for full remission for me. However, if I'm even vaguely right, the fact that some people have full remissions suggest that many of us can achieve full remission with the right treatment. :D
     
  7. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    104
    England
    I been ripped off then - yes my "remission" was about 10 years from onset but I only got 6 months - followed by a several month long crash where I was virtually bedbound - who do I write to to get my other 18 months of remission?
     
  8. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    lol - a very good question... where do you need to go to get a refund?
     
  9. Cloud

    Cloud Guest

    Sickofcfs.....Thanks for that information on your family. That really shines light on a lot of what I believe about this illness.

    Michael.....pretty close for me. I had been on a gradual progression up to the final drop off into the abyss at ~10 years. Never had remissions, but sure found the abyss around that 10 year period....but then, I had some really significant factors contributing to that final nudge off the cliff. So encouraging to hear of your 85% recovery with 15 years sick....that says it all, especially knowing how sick you were.

    I've always really liked Dr Hyde too, especially because of all his work with health care workers and studies on the vaccine trigger for ME (which was my trigger). But, I have to disagree with his latest position on downplaying the significance of xmrv based on the it's incubation period being too long to explain clusters. Lots of possible explanations for that. But then, he knows lots more about ME than me.

    Boule de feu......Most of the immune stuff is over my head, but I know it's not just suppression or over-responding....It's both. That whole TH2 shift thing....one side too high, and the other too low.
    Dr Peterson called it a "perturbed immune system", lol. I'm sure your right about the Biotoxins too, especially Neuro-toxins. I thought that was why HydroxyB12 helps me so much....clears toxins from my CNS.
     
  10. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    10
    Ohio
    sickofcfs-- Thanks for taking the time for such a lengthy a post, that and the others are always helpful.

    Its been generally understood by Peterson and Cheney that there are phases to the illness and the ten year mark seems to be a critical point in many of the cases, not all.

    Its just very odd, how some folks can get slammed right off that bat with the original infection and bedridden right away. Others like myself took over a decade of slow decline after

    the initial flu like illness to become bedridden.

    Just seems like after a period of time our immune system just hits that wall and crashes from all the viral and toxic burden.

    But really never give up hope at any stage, like I said its possible for everyone at any point in the illness to get better. Yes, those sick less than 5 years have

    a better chance of natural remission and those who have been sick for a longer period almost always need a tx to get them well again, but recovery can

    happen at any point
     
  11. Jenny

    Jenny Senior Member

    Messages:
    1,233
    Likes:
    200
    London
    I've been going downhill for the last 5 years (years 23 - 28) since a ski-ing accident. But I had an eight month period in 2009 when I was 95 % again. Been at my worst for the last year though and mostly bed-ridden.

    After being ill for 4 years in 1986 I was told I would never recover and never be able to work again. But I coped with bringing up two children as a single parent and got back to full time work in 1990.

    I know several people in my ME support group who've got 95% well after 12 - 17 years of illness. I think there are very few clear patterns - there is always hope of remission (but sadly always the possibility of another relapse).

    Jenny
     
  12. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I agree with you. I disagree with Dr Hyde. But, I'm not a scientist... oh, wait.. I used to be a microbiologist /medical biologist but that was before I got sick... I don't make too much sense anymore and everything is really mixed up in my head... what I write is what I'm able to remember, but I'm often wrong so I always have to check twice before posting something (what a bummer!).

    Funny because today I was reading something along those lines:

    "Instead, they suggested these findings could reflect what some CFS researchers have long believed— that the immune systems of people with or prone to CFS are a bit out of balance.This could have been responsible for both the slight tardiness of the immune response and the early antibody response of the CFS patients in the study. The researchers proposed that the CFS patients might display increased production of an important anti-inflammatory immune messenger called interleukin-10 (IL-10)."

    http://www.cfids.org/cfidslink/2007/080103.pdf

    So, Dr Peterson calls it a "perturbed immune system" and this author talks about an immune system "a bit out of balance".

    ...and guess who the author of this article is...

    CORT! ;-)

    By the way, you were DEAD ON! =-)
     
  13. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    If this is perturbed, I'd hate to see my immune system when it's really angry. ;)
     
  14. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Thank you for sharing your story. I can relate with the part where you say:

    "With every relapse or illness (cold, flu) I got a little worse."

    And for me, it was also catching life-threatening stuff that normal adults should not catch (eg. mycoplasma pneumonia), and catching odd/weird infections (eg. pneumonia caused by molds) + being so sick from it.

    I'm starting to think that anti-virals is THE way to go!
     
  15. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    10
    Ohio
    Yea no kidding!!

    It seems ME can take similar patterns of other disease such as MS in that it can be mild, remittent, progressive and so on at any point?

    Im actually having my first bad day in a while, having difficulty thinking and writing without mixing letters around, still frustrated!!

    Also, even with recovery its with a grain of salt, knowing so many people you know and care for are still very ill :(
     
  16. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    I'm guessing that my immune system collapsed under the load at which point I was catching everything. Sounds like you're in the same place, Boule de Feu.

    Dr Lerner diagnosed an active HHV-6 infection, but my titre was not very high. My daughter's was higher, although she was less sick.

    At about 3 months into Valcyte treatment I had something that I think sounds similar to an IRIS (Immune Reconstitution something-or-other Syndrome) reaction. I'm thinking -- no real data to back this up -- that the Valcyte eventually cut back on some infection(s) enough that my immune system kicked back in.

    Have you been tested for HHV-6? Not that it's all that helpful, since the testing is notoriously poor at finding active infections. :rolleyes: But it sounds like antivirals might help you, too. Worth a try at this point, probably. :Retro smile:
     
  17. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Actually, I think my case is totally the opposite. I was really sick for many years (catching all kinds of life-threatening and weird stuff), and then it stopped. In the last five years, I haven't caught a single thing ( not even a cold). It feels my immune system is in overdrive. I have the odd symptoms : extreme nausea, severe headaches, chronic sore throat, tender lymph nodes, and intermittent low-grade fever (flu-like symptoms). I have seen an infectious disease but I think he did not test me for HHV-6 (but everything else was done). I would have to look it up and see if it was done.
     
  18. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    Oops! Looks like I got it backwards. :ashamed:

    It sure does sound like you've got some kind of infection, though. I'm sorry the ID doc didn't find it. This is the most frustrating of illnesses.
     
  19. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    What really kills me is the "uncertainty" in this illness. That's what I find unbearable.
     
  20. justy

    justy Senior Member

    Messages:
    2,735
    Likes:
    3,058
    U.K
    Hi, I have been following this thread with a lot of interest. I was first ill with undiagnosed M.E about 14 years ago. I would say i was moderatley affected for about 2 years. This started with a lot of lung infections and having lived in a lot of substandard accomodation for years, 2 of which where very mouldy, and with no heating systems. I spontaneously recovered after about 2 years.

    I was one of those people at the time who thought it must have been just a depressive illness as i had been told by Doctors. I gradually improved until i though i was 100% recovered. I continued to believe that M.E was a psychosomatic illness (yes i am ashamed of this, but i qwant to be honest)
    I then became really ill again 2 years ago after my kids all had Measles. I strted getting really nasty lung infections and had Pneuomonia and pleurisy on and off for a year, wityh massive doses of antibiotics and steroids. I ended up in the moderate to severe category and more or less housebound most of the time. I got diagnosed this year and have made some small improvements. IU can go out a couple of times a week with someone and i can be up most of the day, just pottering etc.

    I now realise that i wasnt completely recovered in between. i was living a more or less normal life, but couldnt work and look after the kids like many women do. I was always going to the doctor and begging them to find out what was wrong with me - i could function but was seriously below par and couldnt take on too much.

    I'M not really sure whaty i am trying to say, its a bit garbled. BVut i think that remmission is possible, but as i have become so sick again i am not sure if complete recovery is possible, or if i wil always be ill to some degree. I have pretty much spent most of my adult life waiting to be well enough to do what i see others doing, but now have to accept that i may never be able to.

    Until i joined this forum i had no idea that people could have remmissions and relapses. For me, my immune system has now gone pretty quiet, i am not sure if i am more worried by this than when i was too terriffied to meet anyone incase i got ill from them. Its a relief to be able to breathe and not be in bed all the time with viruses, bit its weird that i no longer seem to catch anything!

    For the record, i don't think M.E is a psychological disorder anymore -i see i was in denial before about the true nature of my illness. In my defence i have spent 14 years without a diagnosis and being treated like a nutcase by the medical proffession -good old NHS!
     

See more popular forum discussions.

Share This Page