ME/CFS and the Change of Seasons: How Does This Affect You?
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What treatments have CURED people?

Discussion in 'General Treatment' started by Binky123, Aug 8, 2010.

  1. Binky123


    I want to hear stories of anyone you know of who went into remission, and what treatments they were using. I've heard a couple stories from Dr. Lerner and Dr. Chia where they mention remission (these were anti-viral treatments). Also heard of a couple people going into remission from undenatured whey.

    I want to hear about anyone you know. Please respond.

    It's imperative that I get better. I'm only 23 years old and can't let this disease ruin the rest of my life.

    Thanks very much,

  2. Otis

    Otis SeƱor Mumbler

    Cure is a very strong word but I have a friend who has been greatly helped by Dr. Chia. He treated her for chlamydia pneumoniae and now she takes Equilibrant/Oxymatrine under his supervision and consideres herself in remission and lives at least 75%. I would take that. :) Getting a handle on infections is a key step.
  3. Daffodil

    Daffodil Senior Member

    i've heard of a few people recovering on ampligen but i think most got sick again once they went off. also, i know of one teenager who recovered on antiretrovirals but she was sick only one year. i have also heard of a young female recovering on valcyte but i dont know if it lasted.
  4. jimbob

    jimbob ME/CFS84-XMRV+

    myrtle beach, s.c.
    Back in the 80s, the word was if you were going to get well, it had to be within the first 2 yrs, otherwise, well you get the rest.
  5. Esther12

    Esther12 Senior Member

    [Edit: Just seen this thread from four years ago has been bumped - having read and experienced more, I am now even more wary of giving the impression that anything in particular is helpful for CFS, and I really wouldn't want people trying to do the same ammount every day because of something I've read. I've now tried a few different things, and think that my quality of life is higher when I don't try to do the same amount each day, but instead let my health and energy fluctuations guide what I do. Having said that, I've not recovered!]

    Some things a few of those who've recovered have mentioned is:

    1: Meticulous measuring of activity levels, pedometer etc.
    2: Finding the amount of activity you can do every day without feeling worse, and sticking to it (this requires that you're able to avoid any additional external demands... actually that could be no. 3)
    3: Avoid any external demands/desires which could side-track you. Pacing activity levels being the sole consideration.
    4: When you got these things right, gradually get better...

    Saying that, I've spoken to people who have recovered using just about every quack cure imaginable. Quite a few people seem to have something else wrong with them, and when this is identified and treated, recover from CFS. Individual cases aren't terribly helpful for guidance, and CFS research seems to be such a mess that we don't have access to terribly helpful studies.

    I'm still ill, so I'm not terribly confident in any of the above. I've never really intensely committed to the pacing stuff - but I've only just been in circumstances where I realistically could do, and that seems to have led to some recovery on its own. Very often CFS brings with it other problems (poverty, etc) which make it even harder to take care of yourself properly.

    I'm still assuming 'CFS' has lots of causes, and those who recover could happen to have a condition more amenable to treatment than others. I really don't know though.

    Good luck with it all though.
    Last edited: Oct 28, 2014
  6. slayadragon

    slayadragon Senior Member


    All the people I've ever heard of who've provided legitimate stories of getting really well from CFS have done so in one of the following ways:

    1. Extreme mold avoidance lifelong (there are a bunch of these)

    2. Effective moderate mold avoidance + detox (per above....there are some of these)

    3. Ampligen, lifelong

    4. Stem cells (not many cases yet)

    5. Antivirals (mostly just within the first couple of years of illness)

    My PEM was severe when I still had active CFS. But once I started doing mold avoidance, pacing no longer was a defining factor in my illness.

    Here's a thread related to the role of toxic mold in CFS. It's extraordinarily difficult to get well from CFS through mold/biotoxin avoidance, and I would not recommend that people go this route.

    An increasing number of doctors (including, as of two weeks ago, Dr. Cheney) are accepting this as a legitimate approach though.

    Best, Lisa
  7. dannybex

    dannybex Senior Member

    I know a half dozen people who have recovered. And two of them were ill for over 16 years (one was ill for 17 years). So don't believe everything you read.

    Like Esther suggested, the people I've mentioned, have all used different methods and treatments, both conventional and totally non-conventional in order to gradually recover. One has relapse, after four years, but is doing much better in just the past six months. And a LOT of the work, if not often the majority, is pacing, etc., things the patient must do, not the doctor.

    And finally, everyone I've known have all had different issues to deal with, and usually multiple issues: mold, infections (bacterial, fungal, viral), chemical exposures, MCS, food intolerances (often completely overlooked), detoxification problems (as Rich Van K talks about), etc., etc..

    Unfortunately, most of this takes money, or very good insurance. But pacing and resting, and setting those activity levels and learning to say 'no' -- those are free...but very often the hardest piece of the puzzle.
  8. A friend of mine was sick for 5 years. She recovered with pacing, gamma globulin and homeopathy. She considers herself 90-95% recovered.

    I know of another lady (friend of lady #1) who had cancer, and once she did chemo etc. for cancer, the cancer and the CFS both went into remission. Unfortunately she died a few years later when the cancer returned.
    ChrisD likes this.
  9. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    There simply isn't any way to know if ANY intervention leads to a "cure", since people go into remission for unknown reasons.

    The plural of anecdote is not data.
  10. richvank

    richvank Senior Member

    Hi, urbantravels.

    I like that!

    I would like to say though, that if there is a collection of anecdotes from unrelated sources that are all saying the same thing, you have a good start for developing a hypothesis.

    Best regards,

  11. slayadragon

    slayadragon Senior Member

    Caledonia, what do you mean by "homeopathy"? Sometimes people use that word to just mean natural treatments of various sorts, so I'm never sure what to think when I hear it.

    Where does your friend live?

    I have taken to visiting people who have recovered from CFS (there aren't that many!), in order to gauge their living environments in terms of indoor and outdoor biotoxins.

    So far, folks who are recovered all live in terrific locations. I have to restrain myself from asking to move in. (Sometimes, as with Mike and Stormy, they kindly invite me to stay for a few days.)

    So far, I've yet to visit any really sick CFSers who live in a place that wouldn't have made me really sick too.

    In any case, it would be interesting to at least talk with your friend, if she's willing.

    Best, Lisa
  12. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Hi Blinky.. i had a what i thought was a complete remission for 2-3 years (which came after 5? years of illness, 2-3 years of that was very severely sick eg bedbound or housebound). I was that recovered that I even completed in and did a 2 day marathon without post exertial fatigue afterwards.

    I achieved that by basically the advice Ester gave above.. except i didnt use a pedometer, I just guaged activity levels of whatever i was doing and used a clock to make sure I didnt go over my limits. Think of each crash as you have that you are sending yourself away from healing.. and aim to never trigger your symptoms off, this means trying to do less than you are capable of and avoiding anything which will cause more symptoms to come in.

    This is VERY HARD work to do as it means you will need to change MANY things in your life to do it... eg limit friends and family visits, miss things you may want to be going too ect and will mean having to simplify every part of your life so things are easier and you can do less. It involves finding new ways to do things.

    I also set myself enforced rest periods even when I didnt feel like resting or think I needed it (This is called ART=Agressive Rest Therapy). In that time I made myself go to bed and try to sleep (or if i couldnt sleep I'd just lay there with eyes shut). I'd do "ART" every afternoon. If you know by a certain time of most days you get tired.. set a scheduled time to do ART an hr or two before that time happens. It was "ART" time the moment I could feel a crash coming on, I'd send myself immediately to bed for THREE days and stay there, I hated to spend that much in bed but I realised this ART really helped me CFS wise. I've heard of others using ART and being helped a lot too by this.

    (of cause we are all different as our CFS is currently at different levels of severity and what was right for me time wise, may not be right for you). Some may need only half a day in bed to ward of a coming crash while others may need to be there for several weeks. (always aim to be in front of your symptoms, like to try to outwit the CFS). In my brain I saw myself at war with the CFS and my strong point was in strategy and defence (rest).

    I basically lived by a scheduled program to make sure I got the rest I needed and to help stop symptoms. (each day when i first got up, I'd set my program.. from the aim or aims of that day.. all broken down into managable time slots.. to the enforced rest times etc).

    On top of that you need to work out if you have any coexisting things going on eg Postural orthostatic tachycardia syndrome, food intollerances (avoid all foods you find you are sensitive too), chemical or mood issues (if so you need to completely avoid those things) etc.

    I went out of Remission when I stopped listening to my body as I truely thought I was fully over the CFS as I hadnt crashed or got sick in so long.. so what harm can really pushing myself when feeling healthy kind of tired and feeling a little unwell, probably due to a cold or something do?.. and ended up suddenly then having to my surprise a minorish CFS crash, then before i was over that, someone pushed me with something and hence i then severely crashed futher.

    Ive spend now 4-5 years, trying to get back into remission and thou i can stop my symptoms by doing the things I got well doing in past (i can by that go weeks without any CFS symptoms except not a great brain and a very occassional POTS hit). Im nowdays left not able to do much at all without causing symptoms so living a severely restricted life now wishing I'd stayed in remission where i was doing everything again. My body doesnt now seem to heal whatever is wrong. i still thou have hope of going back into remission again at some point. (im better now then i was 2 years ago). Getting into remission Ive found to be a slow (may take years of doing things right), hard process. Last time it took me 2-3 years of trying to get into remission.
  13. Dainty

    Dainty Senior Member

  14. I agree with Taniaaust - I too was in 100%remission through pacing and leading a boring life to stop the relapses but I also took isoprinosine. I had been sick for 13 years. when I go better I felt I could do anything and did - however I cut down on the pills and got into a stressful situation and for the last 16 months have been back down - not as low as I had been - but house and mainly bed bound. I'm back on the isoprinosine now for 16months. I'm so crossing my fingers it works again as I and other experts have said they have patients it worked for. It is expensive and not paid for by social security. I'm like her trying my best to stop the relapses as I do think that is so important.
  15. Victoria

    Victoria Senior Member

    Melbourne, Australia

    I can't comment on what has "cured" people, because everyone is so unique in their variety & severity of symptoms.

    May I suggest that instead of trying to find "cured" people, try looking for treatments & therapies that have improved symptoms.

    I believe half the battle is being informed & educated about your body & how it works, listening to your body & how it reacts, and most importantly learn to relax, pace your day, love yourself, ensure you stay away from negative people & seek out family, friends, doctors, therapists - who are positive, supportive & encourage you to be pro-active.

    Negative people & negative emotions have a negative impact on your chronic illness.

    Improving your health needs to be a mind, body, spirit thing.

    You can't just take a pill.

    I still have pain & health problems since finishing work 6 months ago, but my mind is 97% happy. I do things I love. I fill my day with the best emotional well being I can possibly have.

    I have finally got out of a punishing round of daily anger, frustration & lack of support. I was always too exhausted at the end of the working day to do anything.

    Having emotional "freedom" and getting rid of mental shackles has made all the difference to my life.

    I can honestly say, the last six months (or about 5 months actually) has been the happiest time of the last 30 years.
  16. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    If there were a known cure, we'd all be doing it. Remission doesn't mean you're cured, but some people do go into long term remission, or maybe they recover.

    As near as I can tell, sometimes, in some people, a combination of doing everything you can to boost the immune system combined with careful pacing allows the immune system to recover enough for remission to occur. It seems to happen more in young people, and it seems to happen more with those who start making those lifestyle changes early in their sickness. Of course, we don't have hard data on any of that because good epidemiological haven't been done, so we can only go by what some of the long-time doctors have observed.

    Pacing is important, learning to live within your "energy envelope" and not pushing beyond it. Good nutrition, heavy on the anti-oxidents. Good sleep. Clearing up opportunistic infections, if possible. Minimizing stress. All the things that support good health in general.

    From the patient stories I've heard, it's important that if you're one of the lucky ones who recovers enough to resume a fairly normal life, that you continue to pace yourself and live a very healthy lifestyle, because you will always be susceptible to relapses. And even then, something out of your control, such as getting a virus, could land you back being sick.

    I don't say that to be discouraging. I just think you'll do better if you look for gradual, slow, incremental improvement. I think that will lead to recovering your health better than looking for "the cure." One day, perhaps in the not-too-distant future, there may be a cure; in the meantime, think tortoise, not hare, in getting your life back.

    There's a pretty good video (in 3 parts) from New Zealand about ME/CFS. There's a doctor there, Dr Ros Vallings, who's been treating ME/CFS for 30-some years and she has a better-than-average rate of improvement. That's the approach she takes.
  17. soulfeast

    soulfeast Senior Member

    Virginia, US
    Really Good Place

    How do you judge a really good place? Are there certains states, areas in certain states that are better?

    Thank you!
  18. garcia

    garcia Aristocrat Extraordinaire

    Hi Frankie, I too am taking isoprinosine. Can you tell me what dosage/schedule you take it on? Any time off?
    Many thanks,
  19. ukxmrv

    ukxmrv Senior Member


    I've not met anyone with ME who has ever fully recovered. That may be because I am in the UK and few people here can afford medical treatment for the disease.

    What works for me is to find international discussions on symptoms and then follow treatment plans that from similar sufferers.

    You need to ask yourself first of all, what it is you are trying to cure. Analise your onset, symptoms and history and find people with a similar set. Then find out what protocols they follow for increased functioning.

    If someone claims that they are cured or in remission, check their diagnosis and history and compare to yours first before embarking on anything that could make your situation worse.

    I have wasted years of my life and many thousands of pounds chasing a cure. Very little that I have done has helped me and much has made me even more disabled.

    Min likes this.
  20. slayadragon

    slayadragon Senior Member

    I'd never use the word "cured." Hardly any diseases have cures, and I especially wouldn't expect a disease as complex as CFS to have a cure.

    I would be hard-pressed to use the word "remission" too. That suggests that all the symptoms are totally gone and that nothing ongoing needs to be done to maintain health. When a cancer goes into remission, it means it might come back but there is no sign and people don't need to do anything special except live a healthy lifestyle. I've not heard of anyone with Canadian Criteria CFS/ME who's gotten to that point.

    The word i use is "recovered." Meaning, that people have recovered their health. "Recovered" health means that people can live normal lives again, without painful or debilitating symptoms.

    I've talked to a few people who have pretty much totally recovered from CFS/ME after a couple of years of illness, through at least in part the use of antivirals or Lyme treatments. They've gotten to the point of pretty much putting the illness behind them, though the ones I've talked to report some symptoms still. Hopefully they don't relapse. It would be good for people to keep track of them.

    The rest fit into the category of "mostly recovered." They have some symptoms of the disease, but are living more or less normal lives. And most are having to do something in particular to stay at that level.

    Best, Lisa

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