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Interesting Recovery Story that doesn't involve Antivirals

Discussion in 'General Treatment' started by AdamS, Mar 31, 2017.

  1. AdamS

    AdamS Senior Member

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    This is one of the few stories i've found online that give me hope of recovering so I thought i'd share it with you all:

    http://people.bath.ac.uk/ac886/cfs/

    It's hard to tell whether the sufferer would have met the International Consensus Criteria for M.E but it certainly seems like he had many of the typical features of the illness/disease. I know many will have already tried a lot of the advice in the article (supplements etc) but is there anything we can learn from this story about recovery that is different?
     
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  2. Revel

    Revel Senior Member

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    It may be of help to others as there are some useful management tips to consider, especially for those of us in the UK, who would prefer to fend for ourselves rather than be subjected to NHS "treatment".

    However, for me it was a case of "Been there, done that" - right down to the yoga and sauerkraut :meh:!
     
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  3. ukxmrv

    ukxmrv Senior Member

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    Not really for me. It seems to be based on some very general things that many people have tried and failed to recover on. I can't see anything different here and we are left with the question over whether they would recovered with no intervention at all.

    It's a horrible position to be in and not the writers fault. We are all just doing our best and they have kindly written an account.

    What I tend to do is look for recovery stories which match my own (selfishly as I don't have huge resources to look at everything) or in long term PWME that have a test and find something and treat it successfully or similar story with striking or interesting features.

    In that link the writer says
    "
    but my CFS was most likely triggered by a combination of severe lack of sleep over a long period, significant stress at work through the summer of 2014, and probably a long-term dietary problem. The desire to blame external factors is very strong indeed, so a bit of self-awareness at this stage is essential!
    "

    Sadly, unless we get some biomarkers and tests there isn't much benefit from these recovery stories as the writer wasn't able to determine what exactly what processes were wrong and what made them right.
     
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  4. AdamS

    AdamS Senior Member

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    Yeah agreed, i've spent about £750 on supplements and it seems like i'm just getting worse lol! Also tried Sauerkraut for about a month, I just wondered if there was anything I was missing!
     
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  5. AdamS

    AdamS Senior Member

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    Yeah we need biomarkers soon...Looks like I may as well chug my entire 60 pill bottle of Superoxide Dimutase...it probably won't make any difference anyway haha, I give up. If I could i'd literally administer my own Ampligen, i'm losing the will to live and for some reason recovery stories give me a little glimmer of hope.
     
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  6. jlynx

    jlynx Senior Member

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    They mention cortisol, mine was high in several blood tests, although I know saliva is more accurate. My doctor didn't advise any type of treatment for it. Cortisol dis-regulation makes sense for why I and many of us feel awful in the morning and somewhat better in the late evening. So I'm trying Licorice Root now in the morning to hopefully help with waking up and a supplement with other adrenal supporting adaptogens like Holy Basil, Rhodiola and Ashwagandha. Has anyone had any positive experiences with these?
     
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  7. AdamS

    AdamS Senior Member

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    Good point, maybe that explains why I wake up feeling like i've had all energy sucked from every cell in my body despite being laid in bed, only for this to very slowly improve into the afternoon/late evening.
     
  8. Kina

    Kina

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    This article gives me no hope whatsoever.

    Give up exercise
    Work out whether your immune system is compromised -- you can solve this problem by changing your diet.
    Change your diet.
    Meditate
    Do Yoga
    Take cortisol and DHEA
    Get some fresh air and stay positive
    Be disciplined
    Have good sleep hygiene
    Avoid social interaction

    I don't believe ME is the result of a bad lifestyle or the result of negative thinking. None of this offers any hope of recovery. Can you imagine if somebody offered these solutions for MS, AIDS, Cancer, Diabetes, Alzheimer's, etc. This is exactly why ME is not taken seriously when people believe it can be corrected by life style changes and thinking more positively.
     
    Last edited: Apr 1, 2017
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  9. Basilico

    Basilico Florida

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    This is a really good point.


    I'm always glad to hear recovery stories and I love hearing about what people did that helped them improve.

    Sadly, everything on this list my husband and I already tried or were doing before we got sick.

    If resting, eating healthy, etc... were the cure, I think this board would be vacant because I'm sure most people here have already been doing these things for years.
     
  10. Basilico

    Basilico Florida

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    @jlynx and @AdamS might want to consider doing the 24 hour saliva cortisol test, which my husband did. You take 6 saliva samples at home over the course of the day. Cortisol changes minute by minute (so it's not static) and what's important is that it should follow the pattern of being high in the morning and lowering at night.

    My husband's was the exact opposite; low in the morning, high at night. His doctor had him take phosphatidylserine, but unfortunately it didn't help him - it might help others, though. He also used adaptogens early on but found they did nothing for him.
     
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  11. arewenearlythereyet

    arewenearlythereyet Senior Member

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    It's possible that he went into remission by doing these lifestyle changes, although they haven't worked for me. I'm not even sure you can recover from this? Who's to say that two weeks after writing this he relapsed?

    Unless you trace people's medical history throughout their life and track relapse/ remission rates we will never know?

    I guess that goes for any biomedical cure that comes along.....only time will tell. I'll be first in line to try when they start prescribing treatment though.
     
  12. Jesse2233

    Jesse2233 Senior Member

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    He's still working according to his site
     
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  13. AdamS

    AdamS Senior Member

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    Likewise, but then again I don't think the author thought that either, the illness affected his life pretty profoundly even if it maybe wasn't International Consensus Criteria M.E. He followed Sarah Myhill's protocol which probably seemed to make a lot of sense a few years ago...even recwnt work at Stanford suggests deficiencies in the TCA cycle. One thing on the list that does stand out is a consistent sleep pattern, when I managed 2 weeks of good sleep, I was actually able to do a lot more. Now I struggle with insomnia and pain again which makes it hard to sleep in the first place!

    I do hear what you're saying about lifestyle though, people drink, smoke, take drugs, are overweight, overworked and still don't get M.E. There must be a genetic basis/succeptibility in my opinion.
     
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  14. Dechi

    Dechi Senior Member

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    I am trying not to judge, but this seems a little too easy. I am a fervent advocate of " CFS is not ME ' and to me this is the perfect example of someone fitting the CFS umbrella with some type of profound fatigue. I don't believe he has or had ME.

    In any case, I am glad he recovered.
     
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  15. AdamS

    AdamS Senior Member

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    Well put, i'd probably agree with that based on my experience so far.
     
    Dechi likes this.

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