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What is your personal method of trying to find the route to your illness?

Discussion in 'General ME/CFS Discussion' started by Fogbuster, Nov 2, 2013.

  1. Fogbuster

    Fogbuster Senior Member

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    I want to try and understand how everyone else is approaching and strategising on how to make their plan and get to their root of their problem (or problem's) in the most cost effective, thorough and efficient manner.

    What I mean is if a newly diagnosed CFS/ME sufferer is at the start of the "finding the root cause (or causes) to their illness" recovery plan, what specialists, tests and therapies would you encourage to start with if they can't rely on their doctor anymore due to being brushed off with, "take a pill and pace yourself".

    Best wishes
    Jamie
    merylg and helen1 like this.
  2. maryb

    maryb iherb code TAK122

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    When I got ill the first time - it took me 6 months to figure out on my own what was possibly wrong with me.

    Once I'd diagnosed ME I took myself off to a local ME doc - got a/biotics from him ( no longer practises, hounded out), lymph massage weekly - also did it daily myself. Took multi vits, b vits, b12 and magnesium injections, small amount of thyroid and adrenal support. coq10. All contributed to an improvement.

    I recovered to 90/95% within 12 months - relapsed a few months later with a virus and couldn't get back,... 7 yrs on.
    A big part of my problem is I now can't tolerate many supplements, especially vits and minerals - I'm working to build up a good balance of transdermal and hoping this will help me absorb them.
    Wayne, justy, merylg and 2 others like this.
  3. SOC

    SOC Moderator and Senior Member

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    That probably depends upon where in the world you live. What's possible in the US is not necessarily what's possible in the UK, for example. Also, how far you are willing and able to travel for specialist treatment matters a lot in how you approach the illness. If you're willing to share that info here, you might get better advice. :)
    Valentijn, Sushi, maryb and 1 other person like this.
  4. meandthecat

    meandthecat

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    Less of a learning curve more a staggering lurch toward understanding, a limited understanding, not just of this illness but of the social and political landscape I have lived my life within and had scarcely seen yet alone grasped.
    Naive, so ill and reliant upon NHS support it took 18 months for a diagnosis and to be dropped like a hot potato, NICE guidelines were specific at this time that no treatment was to be offered.

    I was 3yrs going down, so low, more ill than I knew you could be and it was PR that gave me the information to turn it around, a serious thank you to all of you out there.

    In the absence of testing, care or the medical support you would expect of a third world country and so ill that death was preferable I tried anything and DHEA started to work along with ribose. Then Q10, sam-e carnitine and all sorts.

    Slowly I came back from weird paralysis, memory loss and weakness which forced me to crawl if I had nothing to hold me up and still no doctor would even admit I was ill. Then I turned to the dark side and used anger and hatred to purge myself and to renegotiate my place in the world, you don't know the power of the dark side.......
    I guess that some may find this disturbing but I wonder if men need a different path to that which women follow, not that women can't express anger, more that testosterone has a special role in the male make-up.

    The next major step was methyl B12 and a major shift back toward health, which is where I am now.

    I have blundered about and used nutrition and supplements and found a way, no thought or plan worthy of the name just supporting a body's regeneration. No certainties, no guarantees, just process

    I don't know if this will be of any help Jamie, but for many years I had lost hope or rather felt foolish for thinking I could ever improve; I have, people do and with better care many more would. Things are changing for the better, in-spite of all the powerful interests ranged against us, even in the UK.
    justy, Beyond, rosie26 and 3 others like this.
  5. helen1

    helen1 Senior Member

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    If I was to do the past year and a half of illness over again - there's a dour thought - I would have gotten all the testing right away instead of spread out over that time. That way I would have gotten onto the regimen I'm on now sooner, which is helping; I've definitely made some improvements and am back at an intense job very part-time, true, but handling it extremely well; also sleeping much better.

    I would borrow money if need be for testing because I never quite believed what my naturopath thought was going on until I saw the test results, then I committed to a plan. I've repeated the OAT and stool test every 4-5 months to help shape protocols.

    Tests I've found most helpful :
    Organic acids by Great Plains
    Methylation by HDRI
    Comp stool analysis by Genova
    Amino acids by Metametrix
    Salivary cortisol and other hormones by Diagnos-tech
    Genetics by 23andme, then various websites
    MCV and other blood measures by any lab

    I also learned a heck of a lot on PR here from these incredible people. I recommend reading as much as you can and asking questions.

    I'm on a combo of Rich and freddd's SMP, plus all the usual cofactors such as B complex, C, D, E, magn, DHEA, cod liver oil (vit A retinols), GABA, a GAPS type diet and have significantly healed my gut through the usual means, including at the moment lactoferrin-colostrum. Next plan of action is to have my 9 remaining amalgam fillings removed, then after that chelation.

    Wishing you the best, Fogbuster.
    Sparrowhawk, maryb and merylg like this.
  6. August59

    August59 Daughters High School Graduation

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    I'm in a holding pattern as I have tried everything. I'm just trying to rest as much as possible and keep my stress as low as possible and I hope and pray that we get a significant cause to our disease and treatments that lead us to living some significant type of life by the end of next year!!!!
    justy, biophile, maryb and 2 others like this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Fogbuster

    If I could do it over I would have gone to a specialist for testing early on instead of messing around with other doctors who didn't really know what they were doing. I lost a bunch of years that way.

    Best,
    Sushi
    roxie60, justy, maryb and 4 others like this.
  8. stridor

    stridor Senior Member

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    Italy has one of the highest concentrations of C677T and therefore the potential for methylation problems and yet it is not overly expressed in that population. I don't think that it is possible to understand how ME unless someone also comes to know the trigger.

    For many, it will be viruses...some mold...others heavy metals....
    I think that the discovery of the trigger can be very important. If someone has mercury toxicity and still sports a mouthful of amalgams, then recovery is not going to be possible. Same with a houseful of mold...

    My road to recovery was filled with "why's" and I would have gotten further had I kept asking them.
    My theories:
    2007- malabsorption/nutrient depletion theory of Bipolar
    2008 - low glutathione theory of Bipolar
    2009 - NAC as a cure for Bipolar
    2010 - mercury toxicity theory for Bipolar
    2011 - mercury toxicity theory for ME
    2012 - methylation theory for ME
    2013 - Genetic testing which showed 20 out of 25 immune SNPs were hetero or homo plus a bunch of methylation and mitochondrial.

    So, I think that you have asked a great question. For me the road to recovery has been like peeling an onion. None of my ideas or theories were wrong - they just couldn't stand on their own. There was more than one problem driving my health issues.
    So, keep asking the right number of "whys". Keep your eye out for people who seem to be on the same path as you and pick their minds. And look for your trigger.
  9. caledonia

    caledonia

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    If I was starting from scratch and know what I know now, I would learn as much as possible about methylation. Then I would get a 23andme SNP test and a Nutreval test. If I could find a knowledgeable practitioner to help me avoid various roadblocks, I would do that too.

    See the Methylation Made Easy videos linked in my signature. I also have many other helpful methylation links there.

    As far as what the root causes are, it's a combination of genetics and various environmental factors. Your genetics set you up to be more susceptible to these than other people might be. Then it's just a matter of what environmental factors you run into over your lifetime, until it's too much for your body to take. Then you get into a vicious cycle where you can't recover without assistance.

    Everybody has their own unique combination of genetics and environmental factors, and that's why the search for one cause for ME is a failure. There is a general procedure for treatment, but again, it's going to be unique for each individual.
    merylg and helen1 like this.
  10. lnester7

    lnester7 Seven

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    I went to CFS specialist but If you do not have access to one, I would see an immunologist and/or infectiologist, Also if you suspect OI a cardio/electrophysiologyst.

    I just went symptoms by symptom the most bothersome first.
    OI,
    Sleep,
    Thyroid, Low NK cell, Treat infections (HH6, PArvo, Cosaxie reactivations....)
    SOC likes this.
  11. lnester7

    lnester7 Seven

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    I forgot to tell you, My biggest mistake was to ask for stuff that Doctors couldn't fix like fatigue, brain fog... Then I discovered as I target the symptoms that could be treated all the others would get better. So I focused on those that are not too general and you can pin point better (like sleep, Diarrhea,.....) Just a thought.
  12. voner

    voner Senior Member

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    Sushi,

    You are knowledgeable. What do you consider specialists in the United States?
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Well, that is a matter of opinion so I'd rather discuss it where it isn't indexed by Google. How about opening a chat with me?

    Sushi
  14. SOC

    SOC Moderator and Senior Member

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    This is an excellent point that I think is rarely overtly discussed, but probably makes all the difference in getting relatively successful local treatment. The trick, of course, is to know in the early days what symptoms are treatable and which are not.

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