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Long-chain acylcarnitine deficiency in CFS. Potential involvement of altered carnitin

Discussion in 'Latest ME/CFS Research' started by Dolphin, Dec 31, 2010.

  1. Dolphin

    Dolphin Senior Member

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    Australian study just out
  2. Dolphin

    Dolphin Senior Member

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    Carnitine is the one supplement I know has helped me. I know from stopping initially because of cost (until I found cheaper sources) and then temporarily supply issues.
    This was at a dosage of 3g/day (3000mg/day). I reckon a lot of people take less and may not then give it a fair. Sometimes it is sold at 250mg or even 100mg tablets. When I first got it, it was 100mg tablets so I was taking 30 tablets a day. If I hadn't known about the Pliopys study, I wouldn't have taken that dose.

    The full text of:
    is at:
    http://www.cfids-cab.org/cfs-inform/CFStreatment/vermeulen.scholte04.pdf

    I think the fact that people got worse when they stopped taking it is extra evidence that it was helping. I remember reading that the authors thought what had happened was the patients had got used to a higher level of functioning with the carnitine which they couldn't maintain without it.
  3. Dolphin

    Dolphin Senior Member

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    The authors try to link the findings with viral e.g. XMRV, research:
    ==============
    I was reading it and wondering how relevant the findings were - the carnitines looked a bit random (not that I'm an expert on the different ones).

    So I thought this was very interesting:
  4. glenp

    glenp "and this too shall pass"

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    Thank you so much for posting this.

    I am told that it is not allowed here in Canada. I have to buy it under the table- and the date has been erased. If anyone knows how I might get it please let me know. I have tried getting it online but they say its not legal to send it to Canada. I pay $55 for the only one i can find under the table here - Natures Design Acetyl-L-Carnitine 60-v caps 500 mg-- with the date rubbed off

    I just sent the link to the abstract to Health Canada - will see what their reply is. I explained that it is a recommended treatment for CFS and we have to buy it illegally

    glen
  5. Dolphin

    Dolphin Senior Member

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    These days I take acetyl l-carnitine and l-carnitine. I find acetyl l-carnitine is the one that tends to be available as powder - it's cheaper as powder. I get that in the UK. iherb.com and puritan's pride have good prices for l-carnitine. Canada must be very strict - I didn't know any countries were strict about carnitine (one hears it about some other things e.g. hormones, Gingko Biloba, etc).
  6. leaves

    leaves Senior Member

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    Hey dolphin why do you take both forms?
  7. justy

    justy Senior Member

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    Thanks for posting this Dolphin. I found out that my carnitine levels where low when i had Mitochondrial testing done. I have Acetyl - l -carnitine in powder form but havent started taking it yet. Its good to be reminded of it though and will try and speed up ther introduction of my supplements. I always have a problem as i am a bit phobic about taking new things as i have had severe reactions drugs, supplements and homeopathy.

    Why would it be so strictly controlled in Canada?
  8. Dolphin

    Dolphin Senior Member

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    This Dutch study:
    http://www.cfids-cab.org/cfs-inform/....scholte04.pdf
    found that
    I think I have read this before from other studies (not CFS).

    From what I can make out, taking propionylcarnitine (which I may have only seen offered once and I think was dear) is somewhat like taking l-carnitine. The Pliopys et al study used l-carnitine only.
    is a bit like taking l-carnitine.

    But then I have the dilemma that the combined group in the Dutch study didn't do so well:
  9. richvank

    richvank Senior Member

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    Hi, all.

    I would like to note that there have been several studies published about carnitine levels in ME/CFS, and most show low carnitine.
    For what it's worth, the explanation for this in the GD-MCB hypothesis is that it is known that some carnitine normally comes in
    from meat in the diet, and some is synthesized in the body. The latter requires methylation reactions, starting with the amino
    acid lysine. There is a partial block of the methylation cycle in ME/CFS, producing a deficit in methylation capacity. Among
    the many effects of this is a deficit in synthesis of carnitine.

    Supplementing L-carnitine or acetyl-L-carnitine can provide benefit to some PWCs, but it is temporary, because it does not
    address the fundamental problem, which is the partial block in the methylation cycle. Treatment to lift this partial block has
    the potential to restore normal synthesis of carnitine as well as restoring many other biochemical pathways to normal. More information on this is
    available at www.cfsresearch.org by clicking on CFS/M.E. and then on my name.

    Best regards,

    Rich
  10. Dolphin

    Dolphin Senior Member

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    Thanks for pointing out Rich how you feel carnitine fits into the model you propose.

    Temporary is an ambiguous word here. I have generally sustained the higher level of functioning when continuing to take it.
  11. August59

    August59 Daughters High School Graduation

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    I think I had this test done when I wen to Mayo Clinic. It had several "high-lows" that I questioned, but they explained that they were looking for very specific "high-low" models that represented a genetic abnormality?

    I'll have to dig out and look. Thanks
  12. richvank

    richvank Senior Member

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    Hi, Dolphin.

    Yes, "temporary" is ambiguous here. What I meant was that it is not a permanent fix. One has to keep taking it to experience the benefit, as you wrote.

    Also, some PWCs don't experience a benefit at all from supplementing carnitine. I think the reason for that is that there are other problems beside low carnitine that are limiting the ability of their mitochondria to produce ATP at normal rates. I think that these other problems stem also from the partial block in the methylation cycle and the depletion of glutathione. They include oxidative stress, buildup of toxins which block enzymes and act as adducts on DNA, increase in calcium and lactic acid, decrease in magnesium, and deficiencies in production of coenzyme Q10 and creatine, both of which also require methylation for their synthesis within the body. All of these have been documented by lab testing, all of them are known to be produced by this fundamental cause, and all are known to hinder mitochondrial function. Dr. Myhill has been able to help mito function in quite a few patients with her mito support package, which includes carnitine, co Q10, magnesium, B vitamins and D-ribose. However, I think that lifting the methylation cycle partial block is a more fundamental approach that has the potential to correct the root cause, and be a permanent fix. A small number of PWCs have found it to be so, but most are not completely recovered after doing this treatment. There appear to be some stubborn impediments to restoring the methylation cycle function and glutathione levels completely. I think that pathogens and perhaps toxins are the main suspects.

    Best regards,

    Rich
  13. Dolphin

    Dolphin Senior Member

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    Thanks again for taking the time to share your thoughts, Rich.
  14. Chris

    Chris Senior Member

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    Hi, Canadians; Acetyl l-Carnitine is available in Canada, but only as a prescription drug--at very high price--I paid over $100 for I think 100 capsules of 500 mg. each. Your doctor may or may not be familiar with the stuff... Mine was not. The deal was reached apparently between a previous minister of health and a drug company. This is the world we live in, and it will get worse, not better, with the pressure from Codex Alimentarium.. Chris
  15. Snow Leopard

    Snow Leopard Senior Member

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    Wow. Acetyl l-Carnitine is being sold in powder forum in Australia on ebay for around 5-10c per gram shipped. I haven't tried it in high (3g/day) doses.
  16. Dolphin

    Dolphin Senior Member

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    For anyone in Europe, myprotein.co.uk has it for UK50.99 for 1kg (=1000g) or 5.099p per g (it is slightly dearer for 250g and 500g sizes) plus postage (free in UK for orders over 40 it seems). They have recently set themselves up that they are designed for Europe (price will be in Euro etc - it may end up being slightly dearer but one should see before buying).

    Note: I have no financial interest in the company. The general trick is to look out for powder form and it's much cheaper.
  17. Cort

    Cort Phoenix Rising Founder

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    More carnitine - this time from the Far East - this was a writeup from the 2007 Conference

    http://phoenix-cfs.org/old_site/IACFS07II%20BrainGenes.htm

  18. Cort

    Cort Phoenix Rising Founder

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    How funny that was in the Journal of Psychosomatic MEdicine
  19. Snow Leopard

    Snow Leopard Senior Member

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    Well the optimist in me hopes that is so certain people read the article and learn the errors of their ways. ;)
  20. Dolphin

    Dolphin Senior Member

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    Plioplys & Plioplys

    I'm just making excuses now but perhaps with more than 8 weeks treatment there could have been improvement in some of the other areas. Anyway 12 out of 18 areas isn't bad!

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