Anyone doing DRibose, LCarnitine, COq10, B12 (Myhill's protocol)?

Discussion in 'Fibromyalgia Main Forum' started by kholmes, Nov 26, 2006.

  1. kholmes

    kholmes New Member

    Dr. Sarah Myhill, in the U.K., has prescribed this or a similar combination, for treating patients with CFS. It also includes magnesium.

    Is anyone trying this protocol currently? Are you noticing any changes on it?

    <br>[<i>This Message was Edited on 11/27/2006</i>]
  2. Catseye

    Catseye Member

    Yes, this has helped more than any other mix of supplements I've tried. I had the coq10 and the acetyl l carnitine and I was taking them both. But when I added the ribose, magnesium and NADH, I went from being a 2 to a 6 (scale of 1 to 10) in 2 days. I've been taking them, and some other things including b12 shots, about 3 weeks now and feel good enough to believe I'll be cured some time next year. I'm a 7 now with definite, slow, steady improvement. I just have to get my strength back after being on my back for 9 months. The other day I ran after the cat!

    I had been bedridden most of this year until I read that article. I was having heart palpitations and weird episodes in the middle of the night with low blood pressure where I couldn't move and then I'd get scared and the adrenaline would make it too fast. It was horrible. These supplements plus a good electrolyte solution twice a day really made a big difference. I'm taking like 20 supplements right now.

    Be careful with the ribose, I had a few episodes at night with hypoglycemia and had to drink some juice right away to feel normal again. I was doing about 10-15 grams a day at first but now I usually only do it in the morning, about 2-3 grams and that seems to be enough. Sometimes I'll take some in the afternoon. Ribose is supposed to cause hypoglycemia at doses over 10 grams per day.

    I wish I had seen this article about 3 years ago, it would have saved me a great deal of agony and nightly horrific episodes.

    don't forget the nadh and magnesium

  3. kholmes

    kholmes New Member

    I'm very glad to hear her protocol has helped you.

    I've been taking magnesuim, COq10, and L Carnitine, but not the other things.

    I think I have L-Carnitine, rather than Acetyl L- Carnitine. Is that an important difference?

    When you were bedridden, did you ever have a tightness in your chest or difficulty breathing?

    Lastly, can you give me a general idea of the doses you are taking of all of the supplements?

    Much thanks.

  4. Catseye

    Catseye Member

    Hi, kholmes. From what I remember (which isn't much, sometimes), the acetyl l carnitine is a more easily absorbed form. Since I have digestion problems and stuff going on, I take the more easily absorbable of everything. So I also take, and I believe it said in the article, the oil based version of coq10. It's more expensive but it seems to be working better than the old one. I think the article said like 300 mg a day and I'm taking 200 mg twice a day with my fish oil pill.
    It's also supposed to be more easily absorbed with fat. I don't know if it being oil based is enough, but I tend to do as much as I can because I was feeling like death for so long.

    So, to sum them up:

    acetyl l carnitine 500 mg twice a day

    coq10 200 mg twice a day

    ribose 5 grams twice a day to start with and felt so good in a week, cut it back to 2-3 grams, once a day, watch for hypoglycemic symptoms, may have to cut back

    magnesium - 2 kinds, a krebs cycle chelated mineral supplement for heart health that has 100 mg each pill and I take 2-3 each day and also Jacob Titelbaum's Daily Energy Enfusion powder. It has 200 mg magnesium glycinate per scoop (highly absorbable form) and I take 1/4 scoop of powder 4 times per day

    NADH 10 mg sublingual tablet first thing in the morning, I take it with my Sam e

    electrolyte stamina is the stuff I drink twice a day, it tastes really good

    I am taking a bunch of other stuff, too, but I think these really did it for me. I got the electrolyte tip from Cheney, the heart is having a problem with low blood volume and this is causing palpitations and low oxygen. So he says to increase preload (with electrolyte solution, a good one) and reduce afterload (with magnesium). So I had most of this stuff and I ordered the ribose, the oil based coq10, the NADH and the chelated magnesium and got results immediately. Worked like a charm!

    I had horrible tightness in my chest for most of the last 4 years I was ill. It wasn't really chest pain, exactly, it was like a severe exhaustion that was centered in my chest. I couldn't get away from it, it sucked worse than anything else in my life. When I did too much, it got unbearable and I felt like I couldn't breathe and that my heart and lungs were going to quit at any second. I go to the hospital, they do tests, refer me to a psychiatrist because nothing shows up, then they send my poor, dying ass home. I haven't had any chest problems since I started these supplements.

    I don't know how long I'll have to take them, maybe in a couple of months, I'll start cutting back on some to see if I still need them, but even if I have to take this stuff forever, it's so worth it. My chest and body are starting to feel "normal" again and that's something that I haven't experienced in so long, I forgot what it felt like. I also take alot of stuff for digestion and liver because I had hep c. hope this helps, karen

  5. Forebearance

    Forebearance Member

    I'm thinking about trying it, after I get my experiment with anti-viral enzymes under control.

    I'm already taking the d-Ribose and magnesium, and 100 mg of Co Q-10, so I would just have to add a few more things.

    Thanks for the info about acetyl-l carnitine, Karen. I was wondering what the difference was.

    I'm so glad to hear that this protocal has helped someone!

    I started noticing my heart was aching within the past year. I assumed it was an issue with my dose of thyroid (too much or too little can make your heart hurt).

    But I can see how this doctor's ideas would make sense.

    If you try it, Kholmes, please let us all know what you think!

    <br>[<i>This Message was Edited on 11/27/2006</i>]
  6. kholmes

    kholmes New Member

    Much thanks!

    That was very helpful. I am disabled with CFS and have the chest and breathing symptoms you mentioned, among other symptoms. No heart tests have shown any problems, but I'm doing most of the Myhill protocol at the moment--still missing D Ribose and NADH.

    Have you posted a thread about your good results with the protocol yet, for all to see?

  7. Catseye

    Catseye Member

    No, I haven't posted mine yet. I guess I probably should but I was waiting just a little longer so I can say I'm "cured" because that's exactly where I think I'm headed. I just want to make sure. But I should post it anyway, because I think it would work for most people. It's a mixture of Cheney's, Sinatra's and Titelbaum's protocols.

    I took all the supplements from each one and treated each symptom at the same time. I was pretty desperate and getting tired of trying just a few things at a time. I was so ill, I finally got really mad and just started taking everything at once. I'm not so sure that was the smartest thing to do. I was waiting for my liver to rebel but I researched everything and all the supplements I'm taking are stuff the body needs and gets in food or stuff the body makes. Cheney says to add a new supplement every 2 weeks but I didn't wait. I improved rapidly doing this. In 2 days I was walking around instead of lying in bed all day and having my husband help me into the bathroom. I couldn't bathe myself, half the time I couldn't feed myself and I was really wondering if I was going to die this time.

    Okay, I'll put what I did under "what worked for me" sometime soon. The things I treated for myself were:
    liver congestion and dysfunction
    heart disease secondary to mitochondrial malfunction
    central nervous system dysfunction
    hormone imbalance
    neurotransmitter deficiency/brain fog
    indigestion and overall GI dysfunction
    immune system imbalance
    vitamin and mineral deficiency
    body cleansing and detoxification
    food intolerance
    adrenal fatigue

    Funny how I've pretty much self-diagnosed all these things but after about 10 different doctors, nobody could figure any of it out. Thank God for the internet and supplements or I'd still be lying in bed dying. The internet is my doctor, now. karen
  8. kholmes

    kholmes New Member

    Fantastic. It's great that you've done your homework over the years and have found a protocol that works for you. It would be great if you could post what has helped you recover under "What works for me," and maybe copy it to another post here as well.

    Do you buy Electrolyte Stamina online or at a local health food store?
  9. Catseye

    Catseye Member

    I get everything online. I have to now, since I'm in the Dominican Republic. They actually have alot of supplements in stores here, but some of the stuff I can't get like this electrolyte solution.

    And I'm stopping the ribose as of yesterday. I had a particularly bad episode of hypoglycemia in the middle of the night last night. I had to get my poor husband up to get me juice and rice and beans. But I think it has probably done it's job by giving me the jump start I needed.

    I guess I'll start writing down my protocol since I can write again, now, and I want to have a record of it. I'll probably type it out and then copy it in the "worked for me" section. I can't write a book, because I owe it all to Cheney and Titelbaum! They're geniuses!! karen
  10. Kombucha

    Kombucha New Member

    I'm really interested in this as I've been reading Myhill's site although I've read about the Sinatra protocol before.

    I wanted to ask barrowinnovations if you are on a low carb diet with plenty of meat and fat?

    I went on the Life Without Bread diet and because he suggested to take L-Carnitne I did and noticed a strong postive reaction in terms of raised prolonged energy. So I also increased red meat instead of chicken and such and I thought what else can help the whole mitochondria ATP thing. Lutz's book really goes into L-carnitine and low carb and how burning fat more instead of sugar makes MORE ATP. I wonder if the Sinatra protocal would not work very well without a low carb diet?
    This is the levels in meat

    Lcarnitine mg/100g

    Lamb 190

    Beef 145

    Pork 25

    Poultry 13

    Fish 3-10

    It hardly seems worth it to not eat red meat at least once a day.

    I'd like to see if co q 10 follows this sort of level in meat also??

    Anyways, I'm going to start on this mix of supplements tomorrow as my local Health food store is 10% off.

    Oh, my main point is I think the low carb diet is PRIMARY, and in Lutz's book it shows via graph different illnesses and markers and how long it takes to improve--mainly a full 6 months of lowcarbing gets 95% of the results, so I'm thinking MyHill is right on about the Stone Age diet for CFS and REALLY sticking to it. Your body wont make ATP in the same way as it will low carb.

    If mitochondrial dysfunction is due to straying from our ancestors diet then I can understand carnitine and co q 10 which could be corrected with plenty of MEAT, but how do you figure the ribose or high levels of niacinamide figure from a Stone Age diet?


  11. Catseye

    Catseye Member

    Hi Linda, my diet is so weird nobody in their right mind is going to want to do it! I had hep c so my liver is not operating properly (even though my idiot liver doctor said it was just fine!) so I can't eat alot of things. I can't eat alot of protein, that's why I take so many aminos and concentrated whey protein. I can't eat red meat hardly at all so I stick to a small amount of chicken about once a day. I eat mostly lentils, veggies, rice and beans as of right now. Oh yeah, and spinach, lettuce and cucumber juice with lemon. (yuck!)

    The only fat I eat is unheated olive oil with the veggies, avocado and my fish oil, flax oil and primrose oil capsules. Sometimes I can get away with a few nuts or pumpkin seeds but my GI system is so sensitive, still, I have to be careful or my liver gets overwhelmed and I get tired. It's better than it was, about 2 or 3 months ago, I couldn't eat any chicken or avocado at all without feeling really bad - they would make me crash horribly. I was practically starving to death because everything was like an assault on my liver.

    The ribose I'm quitting, but it's what your body makes and uses to make ATP. Your body makes ribose from glucose but it takes awhile. I think it's done it's job; I'm feeling pretty energetic, but my muscles have wasted away and I'm like a coma patient trying to get my body back. That's okay, I've been suffering for so long, at least now I feel good. If it takes awhile to get my body back to normal, no big deal because now I feel good. I missed that for soooooooooo long.

    Since I'm hypoglycemic, I can't do without a lot of carbs or some juice during the day and sometimes, night. I'm blaming this on my liver not being able to store or retrieve glycogen properly and hopefully, it'll go away; it's already improved. But for right now, I'm stuck with my weird food rules. I also have to follow strict food combining rules like no starch with protein and fruit alone. I got a few tips on food from my dreams, my body telling me what it wanted. I've learned to listen to my body and give it what it wants even though it wasn't what my mouth and tongue wanted! Too bad!!

    I'll probably be eating differently in a month or two as my liver recovers moe and more; I'm dying to get some different ingredients in my boring diet!

  12. Kombucha

    Kombucha New Member

    Hi Karen,

    The wierder thing to me is that you can take tons of supplements but not many natural foods!!

    But if the high carb and supplements got you out of bed I am so happy for your improvement.

    I think I am gonna add the ribose to my carnitine high meat diet. After catching the price of co q-10 I know it will be a no way situation sustained. But 20 some a month of ribose is worth a try. I will not give up the carnitine/red meat no way!

    It sure seems there is a cascade to mitochondrial dysfunction and taking care of that should continue to help your liver yeah?

    Good luck to you,
  13. Catseye

    Catseye Member

    Yeah, I think the mitochondria were definitely not getting what they needed and then no energy makes everything else worse. I would love to eat more meat and red meat for that matter, but be careful of the liver. If you find that you get tired after eating a lot of meat or other protein, it's probably the liver and kidneys getting too much to deal with.

    The byproducts of protein metabolism include ammonia. So I take the amino acid arginine because it helps convert the ammonia into urea or uric acid, I forget which, so it can be eliminated. I don't get much arginine in the foods I'm eating. And to help digest fat, I take lecithin. The liver is supposed to make it but I'm helping mine along by taking a capsule. It's also in eggs, but I can't eat much eggs. And the mitochondria create waste, too, and it needs to be eliminated by the liver. I took alot of liver cleanse and liver support pills that helped me to be able to eat protein and fat again.

    My stupid liver doctor gave me antiviral chemotherapy when I had only a 2 million viral load count and cfs. Oh, and he didn't believe in cfs, either. So that was basically kicking my liver while it was down already. I wish I knew then what I know now about livers; I would have tried other ways to get rid of the hep c, colloidal silver, even. Anyway, what a ride for my poor liver!! karen
  14. Kombucha

    Kombucha New Member

    I called my HFS to make sure they have it in for tomorrow, but it is next week that is the first of the month 10% off. I am messed up on dates. So I said, heck and went and got it and tried it with a 1/2 cup of coffee and then ate breakfast/lunch.

    I do not like this stuff at all!

    Muscle pain is gone yes, but I feel WOOZY and wiggly weak on my feet and spacey and nauseous! I feel like time has slowed down. I've never felt this way before.... Remembering other posts on ribose I know someone mentioned hypoglycemia so I'm gonna figure that is what is going on.

    I think I'll stick with brewers yeast as a source which is rich in RNA and therefore d-ribose.

    Well, that was the quickest trial of a new protocal I've ever done! Not for me for sure!!

  15. kholmes

    kholmes New Member

    Isn't it interesting how our bodies are so different in terms of diet?

    Linda: Interesting reaction to the D Ribose. I hadn't thought about Brewer's Yeast.

    Karen: I hope your hypoglycemic episodes stop as you reduce the D Ribose. Do you know about the role of antioxidants in mitochondrial production? i.e. COq10 and the B vitamins are supposed to help, but what about vitamin C?

    My plan is to add the Electrolyte drink next (I'm already doing magnesium, COq10, and L Carnitine), and then I'll add D Ribose and maybe B vitamins in a month or two. We'll see what happens.

    <br>[<i>This Message was Edited on 11/28/2006</i>]
  16. Kombucha

    Kombucha New Member

    Sorry. You had hypoglycemic reaction! But also I had read of someone else on this forum too.

    I had some left over baked potato and am now feeling better.

    I would not have bothered at all with any of this IF I had read the review of Stephen Sinatras book Optimum Health on the Westin Price website. He eschews red meat, butter, skin on chicken and organs and is pro grains and soy--OY, against everything Stone Age for sure. Any cardiologist who holds to this ridiculous party line is certainly not cutting edge and harmful in my opinion! Maybe because I am so firmly entrenched in low carb I had such a reaction of the ribose. I used 1/2 teaspoon which is 1,000. Another 20 bucks lost! Anyone live near Sarasota you can have my bottle if you want to try it.

  17. Catseye

    Catseye Member

    kholmes, yes I take a powder multivitamin and several antioxidants like alpha lipoic acid and pycnogenol, including ester c with quercetin. I'm taking tons of stuff!

    Kombucha, I didn't know Sinatra was pro-soy, that does make him a nut in my opinion. I think grains are bad, too. But I think the grain grasses are good. I seem to feel better with green juices, even though they gag me.

    The ribose definitely helped me for a few days, anyway. I first saw it on Cheney's article talking about Sinatra but when I looked it up, it was one of the things we need to make ATP, and even Cheney says the mitochondria's manufacture of ATP is important to heart function. At least you know you're making ribose okay and it's one less thing to worry about. I bought an extra tub of Ribose, too, when I first started taking it because it gave me such a boost. But now I can't use it either! But you know how many supplements I've bought that I can't use or don't use or don't need? Dozens. I've literally blown hundreds of dollars on stuff but it was the only way to find out. Look at it like paying a doctor to do nothing. We've all been doing that, right? We are our own doctors, now! Trial and error is the only way to heal with cfs!! see ya, karen
    <br>[<i>This Message was Edited on 11/28/2006</i>]
  18. kholmes

    kholmes New Member

    I've blown thousands of dollars on stuff that I either couldn't take or didn't help me over the years.

    Karen: In what form is the Electrolyte Stamina you take? Is it a liquid or is it a powder that you dissolve in water?



  19. musikmaker

    musikmaker New Member

    Thanks for all this great info. I am just taggin this post so I can read it and study a bit when I am thinking a bit better.
  20. Catseye

    Catseye Member

    Electrolyte Stamina is a tasty powder I dissolve in water. It comes in convenient little packets so I can take them in my purse with a bottle of water and have them whenever I need them. When I go far from the house, like to Santiago to go shopping which is an all-day deal, I have to take my own food and stuff with me. This stuff is worth its weight in gold (but it's cheap where I get it), it has:
    Vit C
    Vit B1, B2, B3, B5,B6,B12
    folic acid
    alpha lipoic acid (just 1mg)
    other trace minerals
    but only 2.5 grams of sugar

    No matter how bad you're feeling, this stuff will always perk you up a little bit. And it's really good, comes orange flavored. It has stevia and is kind of "fizzy".

    Don't leave home without it!