Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Where to go from here?

Discussion in 'General ME/CFS Discussion' started by grace30, Mar 24, 2016.

  1. grace30


    I would really appreciate some advice. i am in a bit of a difficult situation. I was diagnosed with ME a few years ago, but i have had it for longer. I have children who are very lively so i don't get to rest as much as i need to, i am also trying to work just a few hours a week, very minimal.
    anyhow, i read dr myhills book and started to implement her regime last year. i haven't noticed much difference - minimal difference. the supplements are all very expensive to keep getting and so i have read another different regime (it is on a website called selfhacked) and i bought the supplements recommeneded for brain fog as that is a major struggle at the minute.
    so, this week, i stopped taking all the other supplements, as ive hard a few times just to add one at a time in to se if it helps. i have got a sore throat now (don't know how related this is as mom has it too and i saw her the other day) but i am not feeling good. i took one of the new herbs for 2 days now and no difference.

    My question is for those who understand this journey is: was i right to stop all the other supplements? how long do i give a new supplement a try? should i add back in what i think are the most important myhill supplements? i have something coming up in a few weeks, which was my motivation for making these changes now,but i see it is backfiring for me. i need to be as well as possible. because im more tired at the minute im struggling to keep my diet healthy too, which obviously isn't helping.
    if it helps i was taking:
    omega oils
    vit c
    oregano oil
    olive leaf
    l carnitine
    d ribose
    vit d
    co 10

    I can't remember offhand all the new ones, but the one i started with was suma root, and there is also black cumin seed oil.
    I have no idea what to do now, please help. please bear in mind i have no money left to buy anything else, i am in the red, so please don't recommend anything else!! thank you for reading
  2. daisybell

    daisybell Senior Member

    New Zealand
    Hi @grace30 and welcome to the forum!
    I think in this journey, we can only do what feels right for us. We are all so different, and things that help one person do not necessarily help another.
    I think trying to eat a healthy diet is good. For me personally, I feel that magnesium helps with muscle cramps. I take coQ10 - but I honestly don't know if it helps or not. I made a decision for myself that I would stop there, and not spend any more on loads more supplements.. I also take LDN and I definitely feel worse if I miss a dose..

    In your shoes, I think I would focus on how to get the maximum rest I could given the demands that you have...
    Good luck with it all!
    helen1 and justy like this.
  3. grace30


    thank you so much for writing me back daisybell. i am going to have to put a stop to the supplements after i finish this batch, unless i notice serious improvement with them.... i guess i just want to feel like im doing something to help myself, to make a difference.

    i find it so hard to rest properly, my mind is active. i try meditations etc, but ned a lot of motivations to keep those up day by day.

    i did ask my dr for the LDN but i am in the uk and he seems surprised and said no thy are only for addicts trying to get off drugs. i am interested in nootropics but i guss i am reluctant to pump any more drugs into my body (have taken loads of meds in the past)

    oh for some answers, and some improvements!
    daisybell likes this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Hi @grace30
    Welcome to PR

    You are certainly in the right place for this kind of info. Many of us have tried the suppl's you mention above.
    And you are discovering for yourself what many of us have. There are so many supplements and they often have minimal effect.
    Some people do say they find some reasonable improvement but usually they are people who have had some lab testing done and who have spent lots of time and money trying things out til they find something.

    For many of us this is not possible. I have spent money better saved on supplements chasing an improvement that is fleeting and not substantial.
    The list of suppl's you are on are all good to try.

    You will find that there are a variety of nootropics and that there are many people here who've tried them. Not everyone has had positive results and some have had short lived results that were not sustained.

    With the suppl's you do have you could try a new approach and (after stopping use for some days) start trying individual suppl's starting with one tab/capsule a day and increasing to a safe maximum dose to see if you notice anything.

    Like Daisybell I take Mg, and CoQ10 and vitamin C. There are a variety of Mg formulations. I have used different ones and find Mg malate works best for me. But others have different results. And there is the issue of quality of specific brands.

    I also have decided that periodically it's good to take a suppl holiday to reassess.

    A few other thoughts. There's the issue of making sure that you have eliminated other reasons for being ill that might actually have a treatment.
    And you might have a look at the threads here on POTS/OI/NMH. There are some treatments that might help if you have this problem as many with ME do.

    And last--your Dr is wrong. Naltrexone 50mg IS for addicts but you were talking about low dose Naltrexone in the 1.5-4.5mg range. And this is used with sometimes good results for fibromyalgia in particular but also ME.
    helen1 and daisybell like this.

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