Mostly Recovered From ME/CFS After 22 Years!!

Mostly recovered after 22 years ME/CFS!

  1. Marilyn Lemmon

    Marilyn Lemmon Moderator

    Marilyn Lemmon submitted a new resource:

    ME/CFS Recovery - Mostly recovered after 22 years ME/CFS!

    Read more about this resource...
     
    Tammy7 likes this.
  2. Empty

    Empty Well-Known Member

    Congrats on your health. Sorry it took 22 years.

    The article confuses me. The antivirals would have worked without the A training?

    Putting that aside, can you jog?

    Can you aerobically exercise until you sweat and are out of breath and recover like a healthy person? and build up stamina? Does it feel good or deathly? And can you improve your mileage steadily week in and out?

    Thanks.
     
  3. Marilyn Lemmon

    Marilyn Lemmon Moderator

    Thanks for the good wishes.

    The antivirals didn't work. I have no theories as to why. Two of them were taken before the amygdala retraining and one during.

    As to exercise, I am 61 years old and have been forced to be very sedentary for the last 20 years. So I'm not taking up running, a sport I have never engaged in. I started by just walking to the mailbox and back. That was about 4 months ago. Now I am walking 2 miles a day at a good 3 mph pace with no symptoms. Which is huge! I hope you can see that.

    Twenty years later, there is a lot of anxiety associated with activities that made me sick for 20+ years. So I have been taking it slow. I plan to eventually add bicycling, the sport I used to do. But not until I'm walking at least 3 miles every day.

    Good luck with your journey and I hope you'll be posting one of these yourself before too long!
     
    Last edited by a moderator: Aug 13, 2016
    Merida likes this.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Congratulations Marilyn

    I'm sure that you tried many other times to get past the PEM and it didn't work and this time it did. That is so cool.

    The stress response for many people with ME/CFS and FM is huge. I agree that it's on a hair-trigger and it looks like you've been able to get it off that hair trigger and are benefiting a lot. I'm reading a book on FM by a doctor who thinks basically thinks it's everything in FM.

    My guess is that something happened over time - whether it was the antivirals or the amygdala training or just time or whatever - to get your stress response to calm down a bit or to allow you to get a hold of it better. Then when the time came for you to test it - wa la! You could handle it - surprise - surprise.

    Some times when it is time it is time.

    One person years ago told me I would get better when I got older as my immune system started to turn itself down. Who knows?

    Dr. Myhill says she just has to get people with ME/CFS to 51% and then their bodies will take over.

    May it be that way for you :)

    Good luck and please tell us how it goes.
     
    Last edited: Aug 13, 2016
  5. Empty

    Empty Well-Known Member

    I see the antivirals now under the "did not work" section. Apologies. Thought you had undergone successful anti-viral treatment which I am interested in.
    Understand yes about not racing round the block.

    Having had bigger improvements than you are currently experiencing, only to relapse, I would think it right to take it steady and at your own pace.

    If all the recovery stories could spare any time for yearly follow up coverage, would be grateful. Swank followed and recorded outcomes of his MS patients he put on a low fat diet regularly and up to 50 years later.

    Good Luck.
     
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  6. Gijs

    Gijs Active Member

    I am still wondering if the abnormal stress response is primair or just a reaction for compensation (bloodflow)?
     
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The reason I suggested that antivirals might have had an effect is that they might have done some underground that you didn't notice until push came to shove. On the other hand the amygdala retraining may have been the ticket. I actually have more mind/body recovery stories, I think, than any other kind.
     
    Tammy7 likes this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It could also be causing the blood flow problems I think.
     
  9. Marilyn Lemmon

    Marilyn Lemmon Moderator

    Thanks for your thoughtful and well articulated reply, Cort. I agree that it could have been the antivirals, a concept that comes and goes in my thinking about my recovery. For whatever reason I was feeling a bit anti-anit-virals when I wrote that piece. I'll change it to reflect that those drugs could have set me up for my breakthrough.
    What's the title of the FM book you're reading? I'm interested in looking at it.
    Your recovery story questions might include something about physical and mental stress before disease onset. I certainly had plenty of both.
    I will keep the HR community posted on my progress.
    Lastly, thanks a million for everything you do. Both Phoenix Rising and now Health Rising have been major sources of ME/CFS information for me over the years. I wouldn't have been nearly as well informed without them!
    Marilyn
     
    Tammy7 likes this.
  10. Empty

    Empty Well-Known Member

    In all seriousness though, I am happy to hear of your improving health ML.

    General question, does this really qualify for a "recovery" story at this point in time?
    Because if it does, then I am recovered! Put me in the hall of fame.
     
  11. Beth from Oz

    Beth from Oz Active Member

    It's so great to hear about your getting so much better , so congratulations! It gives me hope to think it's possible. I hope you keep on getting better and better until you're back on your bike.
     
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  12. Marilyn Lemmon

    Marilyn Lemmon Moderator

    Yes it absolutely qualifies. Most ME/CFS patients would kill to be able to walk 2 miles a day. I feel close to normal, but imagine 22 years of an extremely sedentary existence. That's a lot to overcome even if it were due to shear laziness rather than illness. So totally good that your symptoms are mild- you have an excellent chance of recovery.
     
  13. Marilyn Lemmon

    Marilyn Lemmon Moderator

    Thanks so much Beth! May you find your road to health also. Believe me, if someone had told me last summer that I would be where I am now, I simply wouldn't have believed it.
    Best wishes, Marilyn
     
  14. Empty

    Empty Well-Known Member


    Patients are where they are. Some of them are so much better off than you are on all kinds of levels, and yet they are bedbound. Maybe some would kill to be able to walk two miles a day, I don't know. Why compare?

    So would you say that you were just deconditioned then and needed a bit of a kick start? You say you still have fears of exercise. It is a valuable lesson I guess to keep trying, periodically to check to see if you have recovered and are just now deconditioned.

    Is my asking questions causing you a stressful response? I think I will leave it at these questions then.


    I have recovered. I have relapsed. I did not say my symptoms have been mild.
    I never developed fears of exercise though. I expect most people don't. They learn discernment. Under normal circumstances the body just moves, stretches, does stuff!

    I have re-read your story. I can't see you say in it that you walk two miles a day. Have I missed it? Can you elaborate on that? Is this every day, in all weathers, at what pace, all in one go without stopping, and how many months have you been doing that for?

    I think if it were merely 22 years of laziness, its actually not that much to overcome unless you were severely morbidly obese. A month of exercise would quickly turn that around, they may ache a lot, but recovery and energy production is normal.
     
  15. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks! The Book is by Ginerva Liptan - I can't remember the title - she just updated it - she recommends stress reduction and a whole bunch other things including supplement, drugs and myofascial stretching to fight FM. She has FM herself.
     
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    These stories often bring up a lot controversy. In fact they are among the more controversial posts I do..They set off all sorts of stuff

    Up until her recovery Marilyn's story sounds pretty typical to me (?) She had a

    I don't know if the suggestion was that she might have been lazy...For me I would be shocked if a former avid bicyclist and grad student had just become "lazy". Marilyn was clearly out to do things - and things in her profession where I imagine there weren't that many women.

    Plus she was willing to really test herself with that vacation - that took guts. I imagine that she like all of us had tested ourselves many times before - and this time it happened to work. God knows why - was it the Amygdala retraining? or the antivirals?" or did time and rest just do its work?

    I do think a lot of people with ME/CFS would love to be able to go on an hour walk a day without repercussions.

    I agree, though, it would be good to know if Marilyn can do that consistently? Can you do that say five days a week? Do you feel you are getting stronger?
     
    Marilyn Lemmon likes this.
  17. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I would say that it's a "recovering story". I know that's confusing but I wanted to find out what people who had made really significant recoveries but weren't recovered did - so I said that if you were about 75% recovered that would fit. Most people who get to 75% start off around 30% thankfully.

    I've always been at about 60%. I don't think I would put my story in there until I was about 90% of normal actually.

    I grant it's an imperfect system. o_O
     
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  18. Marilyn Lemmon

    Marilyn Lemmon Moderator

    Whew! Didn't know these posts were so controversial.

    I am currently walking 2 flat miles every day in one go at a 3 mph pace, so it takes me about 40 minutes. I also cook, grocery shop in big stores, do quite a bit of serious photography, and go on road trips. This does not cause any symptoms. As for work, I am retired. I am adding activity back slowly. I would rather go too slowly than set off symptoms. There's no road map for this. I'm approaching it in a way that feels right for me.

    In the past I was frequently pushing my limits and often getting PEM. This happened from going to the store, walking up a particularly steep one flight of stairs, carrying a 15 lb bag of cat litter a few feet, socializing for too long, etc.

    So I am now in a totally different place. Call that whatever you want, but I feel mostly recovered.
     
    Last edited by a moderator: Aug 16, 2016
    Tammy7 and Lissa like this.
  19. Marilyn Lemmon

    Marilyn Lemmon Moderator

    Very well put Cort. Thanks.
     
  20. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Congrats again.
     
    Marilyn Lemmon likes this.
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