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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
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  1. Rockt

    Rockt Senior Member

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    I think this is relevant to Mehtylation/B12. I've had a small but significant improvement from Mb12/Ab12, Metafolin + some co-factors, (can't tolerate mag. or zinc yet), but keep crashing. I know this is obvious, but it just seems like there is a very limited supply of energy (ATP) available and once I go over the limit... CRASH. And man, do I feel like crap. It almost seems worse than before I started the B12's, etc. because I can do a little more and then it's gone. Rest up, feel like crap, feel pretty down and then things get to the slightly better stage again, until... CRASH.

    So, is there a way to increase ATP?

    Found this:

    How to Boost ATP Levels

    Overview

    Adenosine triphosphate, or ATP, is known as the main energy source for cells in the body and aids in various functions like muscle contraction and protein production. While there are no known ways to definitively increase the amount of ATP your body produces, there are supplements that may help boost levels of ATP. Before you take any supplements to increase your ATP levels, talk with your health-care provider. These supplements may not be safe for everyone and can cause adverse interactions with some medications.
    Step 1

    Consume a creatine supplement. According to the University of Maryland Medical Center, the loading dose for exercise performance is typically 5 g creatine, four times a day for one week, and maintenance is 2 to 5 g daily. Creatine is an amino acid naturally made by the body and can be converted into ATP.
    Step 2

    Take 30 to 200 mg daily of coenzymeQ10, or CoQ10, recommends the University of Maryland Medical Center. This compound is involved in the body's production of ATP and helps increase energy levels. Since CoQ10 is fat-soluble, it is best absorbed by the body when taken with food. Taking it at night may also yield better results than taking the supplement in the morning.

    Step 3

    Consume a B-complex vitamin. B vitamins are necessary for the body to produce energy, states the American Cancer Society. Vitamin B-1, or thiamine, is especially necessary for the production of ATP. Taking a B-complex ensures that you are getting all eight B vitamins necessary for optimal bodily functioning.



    Any comment? Appreciate any input.
     
  2. alex3619

    alex3619 Senior Member

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    Hi Rockt, we make huge quantities (in weight) of ATP during a day, but we have very little at any moment - it continually cycles back and forth as ATP or ADP. I think we need more of both ADP and ATP. There was one study I can recall that was saying we might have a severe limit as to how fast we can move ATP and ADP in and out of the mitochondria - it might be a rate limiting step. I am hoping that further research can clarify this. Bye, Alex
     
  3. Mary

    Mary Senior Member

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    Rockt - I have the same problem. I feel better since starting the metafolin, B12 etc., but still crash when I over do it. Very frustrating! I think my stamina may have improved a little, I may be able to do just a little bit more before crashing, but can't really say yet.

    I used to think the problem was not enough ATP but now wonder if something more is involved, perhaps as Alex suggested, or something else. Here's an article I found about something athletes experienced called Delayed Onset Muscle Soreness (DOMS) and it sounded remarkably similar to a CFS crash (post-exertional malaise) - http://www.bodybuilding.com/fun/south127.htm

    The author suggests certain enzymes for this which I haven't tried yet, but am planning to.

    I'm also hoping that since I'm doing better on Freddd's protocol, that my whole body will start working better and heal and maybe get past that damn crashing!

    Creatine makes me nervous. I've only read a little about it, but would be very careful with it and read more before starting it.

    Things can help are carnitine fumarate and CoQ10. To be honest, CoQ10 has never helped my energy. However, I've recently read that it works synergistically with folate - well - I believe I've been folate deficient for many years (with a high MCV on CBC tests) so that could explain why CoQ10 never helped me, if it needed folate to work properly.

    Also, try d-ribose, 1/2 tsp. several times a day. It helps produce ATP, (although it never stopped my crashing either).

    How long have you been doing the metafolin etc.?

    Mary
     
  4. aprilk1869

    aprilk1869 Senior Member

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    Seemingly a lot of what SAMe does is to create creatine as a result both SAMe and creatine are effective in treating depression. They also bring about the manic phase in people who are bi-polar.

    This is also a good guide to deciding how much creatine to take - the author claims you don't need as much as companies suggest.

    http://www.creatinemonohydrate.net/creatine_doses.html
     
  5. Jenny

    Jenny Senior Member

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    I took CoQ10, B1 and B complex for over a year as well as a lot of other things for ATP and had no improvement. A few months ago I got my CO2 tissue levels back to normal by using a rebreathing mask for 4 hours a day for 2 months and was then given a whole load of 'mitochondrial resuscitation' supplements, including COQ10, Niacinamide, B12, B1, Ribose, Alpha-ketoglutaric acid, ENADA, Acetyl-L-carnitine and Creatine to take for 12 weeks.

    I'm a lot better - can walk and cycle a few miles (was previously mostly bed-ridden for 18 months). My doc says there is no point taking the mitochodria support supplements if you have low CO2, and that's why I didn't improve on them before. (Not sure there's any evidence for this though.) I'm also taking vaccines for allergies.

    I still feel ill a lot of the time though, and since my ME has been relapsing and remitting like this for 30 years, I might have improved without all this treatment!

    Jenny
     
  6. Rockt

    Rockt Senior Member

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    I've ben taking the B12's/metafolin approx. 4 months. Can't tolerate magnesium and seem to have some trouble with vit. e and zinc and possibly the AOR b-complex. Trying to work up.

    I'm in Canada where, for some crazy reason, you can't get L-carnitine. So... was thinking a little creatine might help. Why are you so nervous of it?
     
  7. Rockt

    Rockt Senior Member

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    So could you supplement additional phosphate? Is this done? Is it effective, safe?
     
  8. Rockt

    Rockt Senior Member

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    This is helpful. Thanks.
     
  9. Rockt

    Rockt Senior Member

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    THAT is very interesting. I remember reading something about Ken Lassessen, (guy who was "cured" of CFS) doing some sort of re-breathing. What testing is done to determine your CO2 levels? What's it like while you're doing the re-breathing - do you get light headed and feel crappy or is there any positive response?
     
  10. Freddd

    Freddd Senior Member

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    Hi Rockt,

    Here is what appears to work TOGETHER. Adb12, Metafolin, l-carnitine fumarate, Alpha Lipoic Acid and then D-Ribose to aid recycling. This is in addition to all the basics of vitamins and minerals.
     
  11. Freddd

    Freddd Senior Member

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    HI Rockt,

    The story of why you can't buy l-carnitine forms in Canada is because of one person reporting "side effects" from taking it. I read the case report. He was on so many powerful drugs assigning the cause to l-carnitine is doubtful. Also, he may have been experiencing mitochondrial startup and considered that an undesirable startup effect. You can order it with your doctor's cooperation. Also, if convenient you can go to Buffalo, Detroit or other parts of the USA where you can buy it, depending upon where you live, or have a friend buy it and bring it back. As a bottle of 180 capsules can last 6 months it doesn't have to be done very often. Once a year or 2 years can be plenty often.
     
  12. Freddd

    Freddd Senior Member

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    Hi Rockt,

    While I have never hear of Lassessen, you are communicating with somebody cured of CFS and FMS, me. And I don't say "cured", I say CURED! All I have left is neurological damage from subacute combined degeneration and a variety of physical and neurological damage from a 6000 pound forced injection of heavy metal when I was hit by a truck running a red light.
     
  13. Freddd

    Freddd Senior Member

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    Hi Jenny,

    my ME has been relapsing and remitting

    ME too, for 40 years at least. I have a handle on it now. It is the pattern of paradoxical folate deficiency induced by folic acid, folinic acid and vegetable food source folate. The allergies are another indicator of folate deficiency. Perhaps this is an answer for you too.
     
  14. Mary

    Mary Senior Member

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    Rock - re creatine, I've just read negative things about it. I just did a brief google search and there are people saying it's safe despite what other people say, and others saying watch out for kidney damage etc. I really can't comment on it, except I would try to get good information from someone knowledgable before trying it.

    Have you tried using magnesium oil? It's a way to get magnesium in your system while bypassing your digestive tract. Also I think magnesium glycinate is one of the best absorbed forms taken orally, with the least intestinal disruption.

    Mary
     
  15. Jenny

    Jenny Senior Member

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    Hi Rockt - the testing was as part of an autonomic function test with electrodes, heart rate monitor etc. My CO2 was very low and it had got worse since the first time I was tested 3 years previously. The re-breathing mask takes a day or so to get used to - I felt a bit nauseous at first but after that it was fine. You can't do much while it's on though as it mists up so you can't even read. I spent a lot of time listening to audio books! I started to have a bit more energy after about 3 weeks.

    (I forgot to add to my first message that I'm also on Valtrex so that could be helping too.)

    Jenny
     
  16. Jenny

    Jenny Senior Member

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    Hi Freddd - I tried some of your suggestions but got no improvement (or bad effects) from any kind of B12 at high doses or any kind of folate. Also tried Rich's methylation protocol for 18 months or so with no improvement. I might try again now my CO2 is more normal though.

    Jenny
     
  17. rwac

    rwac Senior Member

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    Jenny, where did you get the rebreather mask from? Was there a brand name or anything like that?
     
  18. rwac

    rwac Senior Member

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  19. alex3619

    alex3619 Senior Member

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    Hi, I was looking into CO2 more than a decade ago, though not recently. It increases both the absorption and release of oxygen from blood over time, by altering RBC oxygen binding properties. It is not a quick fix however. Bye, Alex
     
  20. Freddd

    Freddd Senior Member

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    Hi Jenny,

    I do wonder what role CO2 plays in all this. I did find that aerobic exercise to a pulse rate of 125-140 and maintained for 20+ minutes was quite helpful in rebuilding my body and healing the muscles. Just to check a few things, NAC, glutathione, whey and similar glutathione precursors can completely negate the effects mb12 and Metafolin. Paradoxical folate deficiency can also completely negate the effects of mb12, adb12 and Metafolin. Did you ever try completely removing folic and folinic acid while increasing Metafolin? Also the complete removal of glutathione and precursors, NAC and whey could have a beneficial effect. Are you taking any of those?
     

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