Day 2 of Dr. Nicholson's clinical trial

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Jun 4, 2011.

  1. mbofov

    mbofov Active Member

    Well, so far so good. I had been a little concerned because the dose involved is rather large (10 capsules of ATP fuel a day in divided doses which I think is twice the regular dose) and thought I might have a bad reaction to so much so quickly, but nope.

    So of course it's too soon to tell if this will measurably help with CFS, but at least I am tolerating the protocol!

    Cheers -

  2. elliespad

    elliespad Member

    Nothing good, nothing bad so far, so that's good. I wonder if any of us are taking a placebo?
  3. mbofov

    mbofov Active Member

    I never even thought of that - I think I will e-mail Elaine and find out -
  4. mbofov

    mbofov Active Member

    Elaine replied today and all participants are taking ATP Fuel.

  5. elliespad

    elliespad Member

    Well, good to know. But, I seem to remember reading MANY years ago, that the NADH had to be the ENADA NADH to be effective. I'm recalling that only the STABILIZED, PATENTED form is effective. When I took NADH years ago I took the ENADA type. Came in little blister packs that you punched out through the back. They had a coating on them that was supposed to help them navigate the digestive system until it arrived in its' desired location. Since these are capsules they obviously contain powder. I find it odd that the bottle doesn't contain an ingredient list, with doses, don't you?

    Oh well, I'll stay with it till the end as long as I don't encounter unpleasant side effects. Wishing you improved health and energy.
  6. joanierav

    joanierav Member

    and hoping no side effects. elliespad, how did you ever make out with the lyme disease doc? just wondering as i remember you going to see one.

    god bless, joanie
  7. elliespad

    elliespad Member

    HA!! I'm still getting testing. Been to him 3 times. He hasn't dx. me with Lyme, yet. There was a Lyme Multiplex test he wanted me to do, where I had to take Doxycycline, Flagyl and Azithromax, all together for about a week. I wouldn't do it, as I react so severely to drugs, and know I have trouble detoxing. He did order a genetic test that showed I have MTHFR Gene Mutation. He explained nothing about it other than it causes a problem with Folate and can cause me to have trouble with detoxification. No surprise there. Surprising he hasn't ordered me to start the Methylation protocol or to even supplement with active folates.

    My body and brain have been too pathetic to even ask for RichVanK for his input.

    There seems to be a WHOLE LOT more problems with this MTHFR Gene Mutation other than detoxing. Fibromyalgia is implicated too. Here is a link:

    Doc has ordered another test in place of that MultiPlex test, but is another $400, so had to wait to get enough money together for that. Will likely get it done this week.

    [This Message was Edited on 06/07/2011]
  8. mbofov

    mbofov Active Member

    I have not had the MTHFR gene mutation test. However, in general I have a terrible time with detoxing.

    I tried Rich's methylation protocol off and on for 3-1/2 years. I had to keep stopping because it made me feel sick and I thought it was a detox reaction, so I kept at it, off and on.

    Some 6 or 8 weeks ago (I've lost count) I came across some postings by Freddd on the Phoenix Rising board. It's a little complicated, but he believes taht basically many people who seem to have detox on Rich's protocol are actually suffering from induced folate deficiency, caused by Rich's suppelemnts (most notably folic acid and folinic acid). Rich has since removed I think almost all folic acid from his protocol.

    Anyways, Freddd's recommendation is to take Metafolin (methylfolate - Solgar makes a good one) which is the biologically active form of folate, and to cut all folic acid, folinic acid, l-glutathione and NAC, which he says all induce folate deficiency in certain people. Also to take large doses of sublingual methylcobalamin B12 (not hydroxocobalamin) and dibencozide, another form of B12. Since starting Fred's protocol, my energy has picked and I have not had any bad side effects or "detox" reactions. So I am really curious to see if I can detox better now and will be giving it a little try before too long. But all in all I am doing better, have hours where I actually feel welll, have more energy and so on, although I still crash.

    Here's a link you should check out:\B12\Glutathione\Chelation\... - there's a thread about the MTHFR (that always reminds of a certain word which we cannot say here ;D) gene.

    Also check out the thread: B12, the hidden story

    Here's another link with more info re Fred's protocol. About 1/2 way down the page he lists the supps:

    And Freddd has subsequently cut out all folic acid, including all B complexes taht have folic acid in them. There are a couple that now have metafolin (methylfolate).

    You may already be aware of all this and if so, just ignore it.

    One more thing - on my CBC blood work (the standard blood work docs do each year), my MCV (mean corpuscular volume) has been almost at the top of the normal range for many years. Finally a couple of years ago a doctor told me it meant my red blood cells were abnormally large to compensate for B12 or folate deficiency. I've been doing methyl B12 shots for several years and taking lots of B vitamins, so left it at that, until I came across Fred's explanation. It seems like I cannot convert folic acid (which is synthetic) in a bioactive form, but I seem to be doing just great with the Metafolin. I will be curious to see on my next blood test what that number is.

    So if your MCV is number is high (even though in the normal range), you might have the same problem I do and you might benefit from Fred's protocol.

  9. mbofov

    mbofov Active Member

    Still doing okay - will keep you posted!

  10. mbofov

    mbofov Active Member

    Hi elliespad - in the letter the Institute for Molecular Medicine sent us with the supps, it states that the product is called ATP Fuel, and here is a link which has all the ingredients:
    (link not permitted per rules)

    In the above link they do talk about NADH and what they do to ensure it's properly absorbed.

    I used to wonder if Enada was just trying to coerce people into buying their pricey product ... anyways, this ATP Fuel does something to the NADH so supposedly it is stable and absorbed.

    Well - close to a week, and still doing okay - I hope you are too!

  11. mbofov

    mbofov Active Member

    I was concerned in the beginning about the high dose, because I'm really sensitive to meds and detox at the drop of a hat. So I am really pleasantly surprised to find that I'm tolerating this protocol just fine. It is a supplement (no prescription med), although I know it's easy to react to supplements as well.

    Here's a link to the product we're taking:

    Actually, I've been doing a little better than usual. It's impossible to really tell what is making the difference, as several weeks ago I started a modified methylation/B12 protocol by someone named Freddd (user name) on the Phoenix Rising board, which has been helping my energy. Here's a link with more info on that:

    So I know my improvement is at least partly due to Freddd's B12/methylation protocol, and this new supplement may be helping as well, but can't really tell. In any event, I am not doing worse!

    I know all about exhaustion. You might want to check out the above link. I found I'm doing quite a bit better on Freddd's protocol than Richvank's.

    Take care -

  12. elliespad

    elliespad Member

    Oh, thank you Mary. Somehow, I never saw that link in our letter. The doses don't seem high to me though. Anyway, not having any problems taking it so will continue. I'm glad to hear you're seeing improvement in energy, no matter what the source. I did Methylation protocol back in '07 and ran into problems and had to quit. Been wanting to go back to it.

    I've seen Freddds' posting before, but my brain is not absorbing what I'm reading. I have to find something to help me, I feel like I'm going down with the ship. Can only stand a minute or two, having severe shortness of breath.
  13. simpsons

    simpsons Member

    makes a lot of sense to me this is in part dr myhill treatment in one tablet

    not surprised you are doing well mary on the b12 jabs if i got that right, i take vit b compound which has niacinamide and other b vits in find this helps

    we need to know which treatment is helping you so interesting so its a shame you are not starting one at a time or stopping one so you can see the difference when you do so

    sort of a test if you like to see objectively how you do

    are you keeping a diary and can you please keep us posted

    thanks for all the links really useful can t concentrate to read them but your snips are v interesting

    i will come back to them

    i have odd shaped red blood cells and i put this down to the blood brain barrior and then i read simpsons research in new zealand he put people on a high dose of cod liver oil and this helped the cells return to normal shape so they could get back to going through the tiny vessels again

    i have tried several people on this high dose cod liver oil and many were not believers but they did improve and stay on the treatment

    sorry i can t give you links but knowing your enquiring mind sure you will take a look

    shame he had a car crash and so we lost this researcher

    watching with interest your progress be very interested if you did stop the other treatment to see which was helping but your health is most important of course

  14. mbofov

    mbofov Active Member

    First, if you ever are able to do so, do read the link I posted to Freddd's protocol on the Phoenix Rising board. It's really worth plowing through, even if only a little at a time.

    I know without question that Freddd's B12/methylation protocol helped and is continuing to help my energy. It wasn't just the B12 shots which I've been doing for several years with no noticeable results.

    I did do Richvank's methylation protocol for 3-1/2 years but always felt sick on it (tired and it screwed up my digestion), so had to keep stopping it. I put this down to detox symptoms until I read Freddd's posts on the Phoenix Rising board. He had the very surprising idea that these supposed detox symptoms were actually symptoms of folate deficiency, induced by Rich's methylation protocol itself. It turned everything upside down.

    Freddd found that when he cut out all folic acid (including that found in B vitamin complexes), folinic acid, l-glutathione and n-acetyl-cysteine (all of which I had been taking) he did much better. In place of folic acid (which is synthetic), he started taking something called l-methylfolate (Metafolin trade name, Solgar makes it), as well as dibencozide (another form of B12), sublingual methylcobalamin lozenges (instead of hydroxocobalamin) and carnitine fumarate (instead of l-carnitine or acetyl-l-carnitine).

    So 6 or 8 weeks ago I stopped all of Rich's supplements, and started taking Freddd's. I had been doing methylcobalamin B12 shots with no results prior to then, but once I cut out the folic acid, etc., and started taking the Metafolin and the other supplements recommended by Freddd, within a couple of days I started feeling almost normal. It was unreal - there no bad side effects, no detox.

    So it wasn't the B12 jabs - it was everything else that I changed that made me feel better.

    I've been taking the ATP fuel now for about 11 days - I don't feel any worse, and not really any better either. To be honest, I don't have high hopes for it - I've taken all of its ingredients before, although never have taken the NT factor in this high of a dose. But it's not hurting me and just maybe at the end of the 2-month trial I'll see noticeable results.

    I still crash - I over did it last week and crashed as I always do, so neither Freddd's protocol nor the ATP fuel did anything for that. It's just I feel better now when I'm not crashed.

    That's interesting about the cod liver oil and odd shaped red blood cells. Did you try the cod liver oil?

    My red blood cells on the CBC test (MCV - mean corpuscular volume) are at the top of teh normal range - in other words, they are extra large, which indicates a folate and/or B12 deficiency, despite B12 shots for several years and years of taking B complex vitamins. BUT - if the problem was the folic acid itself, that my body can't convert it into a usable form, then that makes sense and perhaps this methylfolate I'm now taking will help my red blood cells return to normal size. My increase in energy would seem to indicate this, but we will see.

    I hope I cleared things up -

    Take care -

  15. mbofov

    mbofov Active Member

    You could compare ingredients. This is what I'm pretty sure we're taking on Dr. Nicholson's protocol:

    So just look at the ingredients and then compare to whatever other brands you're wondering about.

    Elaine, the researcher coordinating this, told me that after 3 days one person called her and was amazed at their increase in energy - they had really good results. That hasn't happened to me, but I could see this helping some people, depending on why their energy is depleted in the place. Too bad we cannot all take a simple blood test to find out what's going on with us!

  16. elliespad

    elliespad Member

    This is day 11 of Dr. Nicholson's clinical trial on ATP fuel for me. Yesterday, day 10 , I started with significant headache, neck pain, continued into the night. Woke at 1 a.m., still had odd headache, neck pain along with nausea, couldn't go back to sleep. Got up took Excedrine Migraine. Did finally fall asleep from around 6 to 9 a.m. Have had this headache complex all day today too. Have taken Excedrine Midgraine, twice today, no help. I am realizing I've been having neck pain, more in my knobs at the base of my head for several, several days. Have not had any increase in energy, feeling of wellbeing, alertness, nothing.

    Don't know if the headache complex is related yet. I hope not. Will have to give it more time.
  17. mbofov

    mbofov Active Member

    Wow - I'm sorry to hear about the headache, neck pain etc. I hope they're not related to the protocol too. You're right, time will tell.

    I haven't really noticed much of anything either way. I was feeling better but that started before I started taking the ATP fuel, and I think is related to Freddd's B12/methylation protocol.

    I did get sick this past week-end, sore throat and extra tired, but think it was related to overdoing it and lack of sleep and crashing and am still recovering.

    Well, onward and upward (I hope!)

  18. simpsons

    simpsons Member


    thanks for your reply will study it when brain function is better kinda understand this. sort of sank in a little

    yes the simpson research is very interesting such a shame he had that car crash and couldn t continue.

    i take 2000mg morning and night and it helps. in fact the first time i was very ill with ME i did not know much and was not online at the time and my grandmother said to take lots of cod liver oil as i was having such pain in the heart. pure rest and heaps i cannot tell you how much i took but it was massive amounts and i recovered.

    it has antiviral properties i seem to recall so that may be part i wonder if anyone else can tell me of this?

    i also find probiotics really helpful in large doses, after a trip to asia i had terrible stomach and lots of people caught it. others had large anti biotic to clear it up but being allergic to the anti biotic i took large doses of the non dairy pro b s and cleared it up much faster than the traditional meds cleared everyone else

    i just let th good bacteria fight it out withthe bad ones, good won through. bless them millions of them like a war zone in my stomach.

    i can only guess at the entro viral wrok that dr chia is doing with such high pro portons eighty per cent and such a long history on these viral infections starting up this illness that although i don t have any bug i can tell there may be a reason why i feel better on these natural biotcs related to enteroviral infection

    i wonder at the link between enterviral infections and xmrv or glandular fever

    i was reading that there was some talk when researching aids hiv that it may be gland fv that mutates into another virus.

    my mind questions that maybe it leaves the immune system and or central nervious system damaged

    oh to have all the answers


    hope the migrainse clear up its the worst has anyone used any new cleaning fluid or chemicals in your house or hav eyou changed shampoo or anything. removing chemicals is a major help or hinderence to mitochondrial. i was amazed at john mclaren howards advice to cut out chemicals and information on toilet cleaners perfumes etc that sit on the mito s and stop the m working.

    i hoe for you that they cease v soon if not already, also cutting out my pain killers was more advice by john and they can cause headaches research shows

    it could be infection in the brain and a herb called mellisa can do wonders but you would need to check ti out or take a medical herbalists advice on interactions etc, you can grow it in the garden its more common name is lemon mint. just like mint for your cookign but lemon version. i pick this and add ordinary mint and just infuse in a teapot for fiv eminutes.

    also good for anti imflamation is if i remember rosemary a few twigs with a slice of lemon in a mug or strong glass a little manuka or better stilll local honey again infuse for 5 mins works well for me, again you would have to check that it doesn t effect your conditions or interact with anyting you are taking meds wise.

    someone here may have a site that you can check this out on or be able to advise you, herbs are powerful drugs in themselves and can interact badly

    on the other hand codliver oil may be a good place to start

    i once took st johns wort less than two weeks after stopping the prozac and boy oh boy it was a terrible reaction so caution is needed

    sorry if you as you prob do all this already

    peace love and hope to all
  19. elliespad

    elliespad Member

    Thankfully the migraine/headache is gone. Still have significant neck pain, and really ditsy feeling head. Woke last night at 2 a.m. and still have not slept. I am pretty sensitive to all chemicals/food additives, so I'm careful to stay away from those things. I did buy a new brand of Melatonin that I opened several days ago, maybe,,,,,,who knows. Thanks for all your suggestions Simpsons, that was very thoughtful.

    Just grateful the migraine is gone.
  20. simpsons

    simpsons Member

    glad your migraine is gone

    had blood tests today and my vien collapsed half way through drawing blood, doc used other arm but both are really hurting now. was such an effort to get there must have done my mito energy in and heart just couldn t pump much as weak after effort of moving

    have a constant headache always, and getting worse atm so i understand