ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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What has helped you the most?

Discussion in 'General ME/CFS Discussion' started by hanhanhannah11, Apr 11, 2014.

  1. amaru7

    amaru7 Senior Member

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    No medical treatment ever helped. But I'm learning acceptance now that I'm disabled due to mitochondrial defect which is not curable despite of what many claim about orthomolecular treatments like coq10, d ribose, NADH etc. So it is acceptance for me and trying to live with it the best way possible for me
     
    Tito likes this.
  2. SOC

    SOC Senior Member

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    What medical treatments have you had?
     
  3. amaru7

    amaru7 Senior Member

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    Hi, almost every orthomolecular treatment that is available. There is no medical treatment for severe inherited mitochondrial dysfunction which is the culprit in my disease
     
  4. SOC

    SOC Senior Member

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    If you have severe inherited mitochondrial dysfunction instead of ME/CFS, I can see why nothing has worked for you. As you well know, there are no known treatments for inherited mitochondrial diseases. :( You have my sympathy.

    Fortunately for those of us with ME/CFS, there are some symptomatic treatments that work for some people, particularly in the areas of sleep, pain, OI, immune support, and pathogen treatment. They're not cures, but they can significantly improve quality of life.
     
    peggy-sue and amaru7 like this.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Isn't that the case with most ME treatments. :ill:
     
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  6. justy

    justy Senior Member

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    Hi hanahhanah11, what has helped me the most has been lots and lots of rest and time. Also MB12 daily injections for a year had a noticeable effect on energy, but then stopped working. Armour thyroid gave me a few fantastic weeks and then I crashed badly last September and am only now back to my baseline.

    Magnesium supplementation cured my restless leg completely. Vitamin D3 helped with cognitive issues, but not much and not permanently.

    Nowadays I can feel sort of OK if I rest pretty much all the time, but as soon as I then feel normal ish and start tp do things it runs away with me and I still feel crap.

    I have to force myself to pace and TRY to do less than I can and TRY and stay within a certain, as yet to be full determined, shifting daily, parameter - and that sort of helps.

    However I continue to search out 'causes and cures' I will be going to see KDM in two weeks for more in depth testing. I had mito testing with Dr Myhill 4 years ago, but her protocol. apart from as outlined above did not help significantly.

    Onwards!
    Justy x
     
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  7. ukxmrv

    ukxmrv Senior Member

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    I'm lucky in that I've been helped by Valtrex, Immunovir, MAF, Humira, Magnesium, Celebrex, charcoal, Betaine HLC and other things. That and, aggressive rest therapy when I am at my worst. Resting with my feet up and little stimulation.

    No sign of a cure though (or even a remission) and I have a lot of problems being able to take the things that help me for financial reasons.
     
    Last edited: Apr 29, 2014
  8. Starfive

    Starfive

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    Forgot to mention feeling more toward normal when taking a brain stimulant medication. The illusion of normalcy though disappears the next day though and the pay back for me is more severe PEM. One day able to enjoy some function :), the next back in bed sleeping for 14 hours only to awake to exhaustion, brain fog and OI imbalances. :(

    Thanks for the comments. I think all of us would like to find something that helps.
     
  9. Starfive

    Starfive

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    @justy
    Would you mind sharing what kind of magnesium and ow much helped your restless legs? I have a friend who has that nightly. Thanks.
     
  10. justy

    justy Senior Member

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    I used Natures Own Food State magnesium 100mg - as it is food state it equates to 300mg. I took one daily and it had an impact on my daily foot cramps within a week and completely cured the restless leg over a period of a couple of months. Dr Myhill states that it can take at least 3 months of supplementation to replete a deficiency of any kind, so taking it for at least 3 -6 months to see results can be normal.

    I know many people with RLS have been helped with magnesium, but most of the ones I know also had M.E.

    http://www.natures-own.co.uk/Biofood-Magnesium-100mg-M565/
     
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  11. Starfive

    Starfive

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    Thanks Justy for the info, I will pass it on.
     
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  12. amaru7

    amaru7 Senior Member

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    SOC likes this.
  13. manna

    manna Senior Member

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    one thing that helped me alot was a healthpoint electro-acupuncture device. i manage to buy 1 for £2 at a car boot. it removed two years of stitch in my liver immediately. i rate it as what brought me back from a state called "retention toxicity" something i heard h.huggins coin first and fit me to a t. basically it untied a load of nots all round my middle. id gotten worse post mercury removal. i found this device to be much more affective than paid for needle treatments.

    another device(s) ive used alot of are "angel pulsors", set of 3 in blue, green and red, with the handbook "healing energy" by john davidson, to go with them so as to know where/how to use the pulsors. for instance, green pulsor on the brow, red under the right shoulder, blue under the left, whilst lying down, relaxes the mental circuit. can also relax emotional and/or physical circuits. can be profoundly relaxing. they induce the delta state which is kind of catatonic i think, very healing, like deep sleep. it combines the principles of polarity therapy, of randolph stone with the use of the composite micro-crystal pulsors of dr .yao. i find sleepig with the pulsors on my tummy to be very soothing. i would rate that single inclination as the reason for another possible recovery as doing that, with the right diet, was able to repair the gut during sleep.

    tai chi did some real good once but never kept it up. central most important step for me was low g.i. organic "hay combining" diet. the rest only works if i get that right really. no way i could ever repair my gut if i were eating gluten. so i go for diet and treat yourself at home. there are some real decent devices on the market now, that healthpoint device, with the indepth manual, is like being a master acupuncturist. ive tried a few other devices but only had any luck with these. the pulsors are quite surprising in how they can inintiate a deep relaxation. if i had to have only one device it would be a set of pulsors. i found they really tip it in my favour. the relaxation they give is followed by an equivalent small die off. so you're getting die off without taking anything physical inside, that might have undesribale side affects anyway.

    i thought complex homeopathy had quite a kick to it. cranial-sacral was nice and something id do twice yearly if i could. my sis has done relfexology on me which was relieving.
     
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  14. jann1033

    jann1033 Senior Member

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    The thing that has helped me most is knowing my limits and stopping before I pass them, rest when I need it and not pushing myself.
    If they would give them, cortisone would help. I get a cortisone shot for arthritis every 3 months and get some relief fromCFS from it (I think this last one helped relieve the flare I was having since my 2 month old butterfly rash disappeared overnight and hasn't returned for a week.)
    Early on I tried every supplement I could find and nothing really helped. Didn't think it was worth the cost for basically no results
    I was prescribed antidepressants even though they admitted I was not depressed and they made me considerably worse. When I was dxed there wasn't much else to try.
    I'm kind of glad I took that route as I don't see a lot with much benefit to those who have been sick a long time. I saw a chart once about the topic and rest and maybe diet changes(? Maybe 1 other thing, i forget) were the most successful for most .
    My original doc was big on doing no harm and since anything then was way experimental that was probably a good thing
    .
    Gotta say though sometimes I wonder if some meds are successful due to questionable dxs. I have a relative who "had CFS", about 6 months start to finish, mussed a few weeks work and was "cured" by a naturopath. Or did she not have CFS to start
     
    Last edited: May 19, 2014
  15. Ian

    Ian Senior Member

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    For me, root canal extraction, 5 cavitation surgeries, and a tonsillectomy, and I'm basically 100% normal now.
     
  16. anusca

    anusca

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    hi ian.did you go to bedford to have ur cavitations done?i had mine june i feel azimg for a month and then back to normal.when u say u had five ops, is that you had to have them done all the cabitations 5times?
     
  17. Debbie23

    Debbie23 Senior Member

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    I was reading this thread and thinking Honestly? What has helped is Finding this site! Finding so many intelligent, educated and knowledgable people who are willing to talk about this disease and share their experience online, along with people like Jonathan Edwards and Charles Shepherd willing to share their insight, empathy and understanding. After fourteen years or more of being ill, of being bed bound, housebound and totally reliant on other people, I was STILL in denial about being so ill. About the fact I needed to accept my limitations in order to manage at a better consistent level without getting payback.

    While I've not tried half the medications or things you guys have that see an improvement. Finding this site has made my outlook of, and acceptance of being ill better. It's helped me to accept how limited I am which means I've managed to do more without so much payback. I've found its okay to learn to accept my limitations By forcing myself to listen to my body and adopt pacing properly. I'm still learning! But I'm better at it now and over time I hope it will make things better. I'm going to invest in a HR monitor as well and see if I can improve on things again. But it shows the kind of experience and wisdom that can be shown and shared from within the community.

    I wouldn't have know anything about the ICC or CCC, or principles about AT that reassure me that I'm not a fraud and grant me the strength to say it's right to listen to my body...because look! Here's some very clever people right here saying the same thing! :)

    So this site has helped and you guys, all of you. So thank you to everyone, Charles Shepeherd, Jonathan Edwards and all you guys. You want to know what's helped me? you all have! :)
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Leaky-gut diet and supplements. Details in my profile and also in the Leaky-Gut forum. No recovery though (yet...). That is a rarity.
     
  19. alex3619

    alex3619 Senior Member

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    The simplest, cheapest and most long term treatment is pacing, or staying within your energy limit and not doing too much or too little. Its the not doing too much most of us struggle with.

    I have had short term success with lots of things, but no long term success. Methylation treatment helped at first then I declined, though I lacked the resources to follow it properly. A form of CoQ10 that is no longer available helped, but I have not tried PQQ or MitoQ, so they might help. Resveratrol once every four days helps. I do not need to take it every day. Resveratrol is particular good for my asthma-like issue.

    As for sleep, I no longer try to keep regular hours. I sleep when I need to, and only when I need to. This makes it hard to function in the waking world but improves the quality of my sleep.

    I try to eat healthy, but working out what is healthy is an individual journey. We are all different.

    I have never tried antivirals but I know people who do well on them. Some do well on antibiotics, or a paleo diet, or methylation treatments. If you have the time, patience and money then there are lots of things you can explore, including seeing a doctor who really knows what they are talking about.

    If these options are not available, then learning to find things you can do that keep you active and not too active, and learning to accept you issues for now, is about all you can hope to do.

    In the UK (and elsewhere) its important to be cautious about claims that CBT and GET can help. Cognitive behavioural therapy and graded exercise therapy have not been shown to produce any substantive improvements in functional capacity, but a small percentage of patients do find they help with their attitude toward their capacity .... but against that a large percentage of patients report they get worse from GET in particular. In surveys this is regularly over 50%. Do investigate this thoroughly if its been offered, there are some great commentaries on this site.
     
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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    What has helped me the most is finding this website which led to finding my doctor and to several very close friendships from PR that I would not trade for anything (except for ALL of us getting well!)
     

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