Anyone doing the Myhill Protocol lately?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by kholmes46, May 1, 2012.

  1. kholmes46

    kholmes46 New Member

    D ribose, acetyl L-carnitine, coq10, magnesium, NADH? Haven't looked into this in a while, and I know I've got mitochondrial/atp problems. Also wondering if the caveman diet is helping anyone.
    Thanks--
  2. simpsons

    simpsons Member

    hi katie

    yes i am doing the myhill protocol, it does help. the caveman diet is good though hard to keep up all the time

    the main factor is to keep processed foods out of your diet

    i found dr myhills advice to cut out wheat really helped with pain light sensitivity and ringing ears

    i can tell if food has wheat in it without any taste as my ears start ringing

    i am a big fan of nadh and q10 is great combined with the correct form of magnesium. see dr myhills site for more details

    it is not a quick fix but does work for me and other on here have said the same in the past

    the other thing is vit b12 shots they are really good. though i have found some vit b12 tablets that help too

    good luck let us know how you get on

    really its the chemicals in the food and the microwaved food but also cutting out chemicals in your house is important for the mitochondria too

    toilet cleaners air fresh products even soaps can all have chemicals that block the mitochondria

    simps
    x
  3. Gee1

    Gee1 New Member

    Yes, I've been taking them, d-ribose, AL-Carnatine, Taurine, Magnesium Malate.
    I know it felt better to try this than to do nothing. I think with ME/CFS, one has to always try and hold on to hope, and trying a new regime, supplement or prescription drug, can give & help maintain hope. We would all happily accept a massive placebo responce, for so long as we are not hurting others, I don't we care what makes us well again, we just want the pain to go away and feel some energy in our mind and body again.

    I was using D-Ribose intensively, with Taurine, in tea. I needed some normal sugar as well. I ran out of D-Ribose and felt dreadful, until new supplies arrived. Tea tasts so much nicer without the D-Ribose and especially Taurine, so in the last week I have stopped taking it, and I feel no loss of it. I do wonder how the body copes with the sugar of D-Ribose, as we are all told with CFS/ME we should avoid lots of sugars it gives an energy crash. I cut out sugar five years ago, using sweetners, then last year went back to white processed sugar as they say aspartame in sweetners may cause harm. There is an expensive natural unrefined sugar, which I have not tried.

    It may be an unrelated co-incidence, but in the last week I have had two or three days where I felt much better, waking in the morning to no stiffness in my muscles, and sleep that I was shocked to find was actually for once refreshing. This co-incided with adding sea salt to my diet. Normally I take no extra salt. Taking 2g (one teaspoon) three times a day in a table spoon of warm water. My advice would be, if you do not have high blood pressure, then you should see if taking sea salt will help with your fatigue and pain. The sodium is vital, and with decades of being told not to take salt, many people now have too little salt. I have just read, by coincidence again, that saline iv drips have been found to greatly help CFS/ME. It may be a placebo responce, but right now I praise my new sea salt regime and am not feeling a need to take d-ribose.

    My CFS/ME with Fibromyalgia came on in Dec 2009.

    Gee1
  4. simpsons

    simpsons Member

    Gee1

    you are so correct salt is needed by our body. it is very important.

    only if you have high blood pressure you should not take it, but always check with a dr

    dr julia newton of me research uk said that there are a lot of people feeling v ill because they are not getting enough salt

    i took her advice spoke to my dr and it really helps raise my blood pressure and helps my pots too

    good luck with myhill protocol katie
  5. Gee1

    Gee1 New Member

    Hi Freida,

    http://en.m.wikipedia.org/wiki/Stevia#section_1

    Thank You ! Stevia is the name I could not remember; brain fog. I had in the past skim read too quickly about it, and mistakenly decided not to try it having missed read about it being 'bitter' as an after taste. Apparently this is only if one takes too much, and it is 200 to 300 times sweeter than refined sugar ! And 1kilo is only $30 USD, so that would last for ages. So, I think I will try it.

    I was taking around 22 different products, between supplements and meds., so it gets expensive and quite confusing and actually quite dangerous as some can interact badly. I was just trying to 'press as many buttons' as possible in the search for recovey from CFS/ME. Thus I became someone who has experienced Seratonine Syndrome. I was looking out for it, and being careful, but it still caught me by surprise, came on quickly in 60 minutes, then over 5 minutes deteriorated rapidy. It was my first experience of fainting, everything went black as I rushed for the loo with terrible nausea. My fiance found me on the floor. Could not remember immediately how I got there. In the space of 15 seconds I became drenched through in perspiration, like having taken a shower, then the nausea slowly subsided, and I had a pretty rough night with flu like pains, stabbing ear pain, and it took 7 days to get over it. Three prescription meds in small doses, had combined, to cause it, and it was my fault.....though the dr prescribing ever told me not to take them at the same time.....they were very small doses of Tramadol, Lycra and Selegeline. Never take these together. I had wanted to inhibit MOA-B by 5mg of Selegeline twice a day to enable PEA (the good stuff in chocolate) to give me a boost, 30mg PEA every 60 minutes, for 3 hours, it gives a lift, but is too short lived to be practical, unfortunately. Still, it made a change to find an anti-depressant that actually worked. I was also taking 5-HTP and Ginseng and Ginko bilboa, and one should not take these supplements together either. So, I have digressed off topic, but hope it was of interest to all readers.

    Gee1
  6. deepak

    deepak Member

    Having a lot of Bananas also increases serotonin !

    My yoga teacher told me to have 6 a day !! but I find it too much to have. I have one medicine called STABLON which is a serotonin enhancer and no side effects.

    Love,
    Deepak
  7. Gee1

    Gee1 New Member

    Hi Deepak,

    Yes, I've tried Stablon and Strattera, and neither did anything for me.
    When I got Seratonine Syndrome, I realised afterwards, that despite pushing Seratonine that high, it did nothing to make me feel any better. The medics have
    no means to test what a live persons seratonine level actually is. I believe it can only be done by autopsy. And, you know, they don't really know how anti-depressants work, its all theory, as there are no physical means to test.

    Gee1
  8. mbofov

    mbofov Active Member

    I've been taking d-ribose, carnine in one form or another, coq10 and magnesium for at least 5 years. I don't take NADH - at one time it boosted my energy but then it stopped helping and was too pricey. I don't know how I would do if I stopped these things, I know they're not hurting and may be helping.

    Some things I found in the last year that really helped were folate in the form of methylfolate (cut out all folic acid, which is synthetic and can interfere with the absorption of folate), and P-5-P - the bioactive form of B6. Both of these gave me a boost in energy, thoiugh I had been taking a B complex vitamins for many many years, but they had the synthetic forms of the Bs. Also take methylcobalamin 5,000 mcg. a day. Thorne Research has a good B complex and there is a B complex by Swanson that is very good with all bioactive forms of the Bs.

    These are helping my energy, but also found that they increased my need for potassium - I now take 400 mg. of potassium a day, and that is very important. Did not realize I was deficient before.

    I generally eat unprocessed foods though I do drink coffee. It helps keep off weight and keeps me healthy in general, so well worth doing. I cannot remember the last time I had a french fry.

    Mary
  9. rachel76

    rachel76 New Member

    On the subject of Dr Myhill, I worsened on her protocol. The EPD injections were bad for me. The diet was too narrow for me to keep a decent weight and health on it. (If you think about it, there is no real research published that says the Paleo diet will make all people with ME healthy - or even improve. No controlled trials.) The Biolab and other supplements she gave seemed to be full of chemicals that also made me worse. I regret trusting her and not my body when i was feeling worse. Since then I am skeptical whever docs say "It will get worse before it gets better".
    I wish I could be more positive but that was my experience unfortunatly.
  10. Gee1

    Gee1 New Member

    NAD is much cheaper than NADH, and as I ordered NAD by mistake, I decided to take it when I ran out of NADH.

    I can't say if the supplements really work, but they are better than doing nothing, so I take them. Reading of formal studies on placebo effect, I have read of people saying they feel great improvement after receiving what they are told and believe is an injection, when all the Dr has done is insert the needle of a syringe, without injecting anything.

    Gee1