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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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Reverse Mitochondrial Damage 101

Discussion in 'General ME/CFS Discussion' started by Radio, Feb 11, 2014.

  1. Leopardtail

    Leopardtail Senior Member

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    Sorry did not realise you were talking exclusively about PS vs PC. Thought you comment referred to supplements generally versus PC.
    High night timer Cortisol or trouble sleeping might suggest PS first, inability to think laterally might suggest PC first, other than that not sure.
  2. Sporty

    Sporty Senior Member

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    Hi @radioactive_man @radioactive_man

    I was just reading your post....

    I am on the mitochondrial repair programme and have been for four months now. The question is I'm not on any of this lipid stuff you mention. Am I missing a piece of the jigsaw here?

    I take at the moment:

    B12 and mag injections
    1500 mg of niacin
    Multi vit and min
    Multi B vit
    Co-q 10 200 mg
    D-Ribose
    L Carnatite
    Creatine
    MMM (mineral mix)

    Am I missing this lipid component?

    Cheers
    Simon
  3. m1she11e

    m1she11e Senior Member

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    Im just starting the Wahls diet. I may or may not take some supplements in conjunction with it. Have you incorporated the diet and have you gotten any results?

    BTW, I took NT factors years ago and I did feel an increase in energy. It wasn't life changing but I felt it. I was trying to remember the name of the stuff when I read your post. I may give it a go again depending on the
    cost. I remember it being a bit pricey.
  4. burgeo10

    burgeo10

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    hey @Sporty, am thinking for starting a similar programme to you. is it working by any chance?

    Thanks :)
  5. Sporty

    Sporty Senior Member

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    Hi there,

    Well I've been four months on the mitochondria programme and yes I feel better. All symptoms are lessened, but alas still there. I don't know why I'm on an impasse just now but hey oh, better is better! I'm just today starting a methylation programme on top of the mito sups. Expensive but I'm determined lol
  6. burgeo10

    burgeo10

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    That's great that its helped even a little bit. If you dont mind me asking, how did you decided on the supplements? Also i live in London, and wondered if you know any decent cfs doctors in the UK, as you appear to be based here? Finally, how are you determining which methylation programme to begin?
    Thanks!!
  7. Leopardtail

    Leopardtail Senior Member

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    Sarah Myhill is good for Mitochondrial stuff. A great deal depends on your dominant symptoms.

    Might be worth you checking out her book, it has a lot of good advice you can self follow before consulting.
  8. Aerose91

    Aerose91 Senior Member

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    I just wanted to add something to this discussion. I tracked down a doctor who is familiar with the Patricia Kane protocol and she did 2 blood tests in me which were read through BodyBio, Dr Kanes company.

    Talk about detailed, I got about 30 pages back of intensive breakdown of myelin, mitochondria membrane function, immune system deficiencies, cell membrane health, all fatty acid levels and every single nutrient that makes up a cell membrane and their ratios. It takes the guessing game out if it and tells you exactly what you need and what ratios are off. I'm meeting with my doctor so I to interpret all of this but I really look forward to attacking these things since there's a lot wrong. I feel more confident that this is a major source of my problem and I know how to proceed vs guessing.
    maryb likes this.
  9. maryb

    maryb iherb code TAK122

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    @Aerose91

    the Bodybio Co looks very interesting. I just read a little this morning about how essential the balance is between omega3 and 6. Pity Dr Kane doesn't take patients, she's sounds fantastic. Good luck with your doc.
  10. Leopardtail

    Leopardtail Senior Member

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    I look forward to hearing how you get on when you put it into Action.... please keep us informed... :)
  11. Aerose91

    Aerose91 Senior Member

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    Will-do. If you guys would like as well I could post my results to check out the tests they do
  12. Aerose91

    Aerose91 Senior Member

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    Yes she just interprets the test and gives it to the treating physician so you're still getting her expertise. As long as the doctor does the test through BodyBio it will be read by her. Just need to find a doctor who does it. I'll try to get a list of physicians associated with the P.K. Protocol when I see mine next.
  13. Aerose91

    Aerose91 Senior Member

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    Oh and also the test is $550. The blood lab is at Johns Hopkins hospital and then they send it to BodyBio to be read and the report put together. I just noticed it also comes back with a detailed diet plan to fix the ratios that are off.
  14. maryb

    maryb iherb code TAK122

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    @Aerose91

    I'm sure this programme will help you improve as its so specific to your needs.
    Its such a shame that I have so many intolerances, this is part of what stops me moving forward with anything like this. Most of the time I can't tolerate the supplements even though they're what I'm deficient in:(
  15. Leopardtail

    Leopardtail Senior Member

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    Mary,

    intolerances can be associated with low levels of Melatonin, Vitamin D or Melatonin. I have a friend with very severe Chrones Disease - he get's around this by eating food one day then waiting at least three days before eating it again. Apparently you have to eat something once to turn immunity again, then again to trigger that immunity/allergy. No idea whether it works for ME but maybe worth a try.
  16. maryb

    maryb iherb code TAK122

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    @Leopardtail
    thanks, that does make sense, the only thing is I have such a limited range of foods with all my intolerances, that I'd struggle to have one food and then not have it for a few days. Its very similar to the 5 day rotation diet that nutritionists I've seen have recommended, but it just doesn't work for me.

    For example at the moment as I've been feeling so ill the juicing has gone out of the window, I've cooked some brown rice and frozen portions of that, so then I just put some turkey and frozen broccoli in a steamer pan for 1/2hr and then add the rice for 10minutes. Its just a question of eating something to give myself strength without using energy needed to prepare stuff. I had just an advocado last night, I was too exhausted and felt so sick. Its hard.....

    I've not eaten rice for a long time due to the arsenic problem, I had very high levels on a hair test but I was eating it every day. At the moment I don't have any other options.
  17. Leopardtail

    Leopardtail Senior Member

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    Do you have to avoid the foods completely, or just put up with symptoms?

    I know the feeling about preparing meals, there are times when I have had to learn to hate ready meals less, or use refrigerated soups to get some proper vegetables.

    Funnily enough though some of the things I react badly to (like cabbage) I just do not need at all (I have masses of Sulphur based amino acids). I ended up having some amino acid and mineral tests done (at my expense) that revealed all sorts of useful information.
  18. Aerose91

    Aerose91 Senior Member

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    I'm extremely sensitive, too. Mine is from benzo withdrawal a couple years ago and since then I have paradoxical reactions and sensitivities to basically everything. I have to tip-tow very lightly when starting any new paradigm because if I go too fast it can have disastrous effects
  19. Sporty

    Sporty Senior Member

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    Hi, was this reply meant for me?

    Si
  20. Sporty

    Sporty Senior Member

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    Whatever happened to radio who posted all this stuff? He seems to have disappeared.....

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