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PKU symptom after me/cfs

Discussion in 'General Symptoms' started by Lou, May 20, 2013.

  1. Lou

    Lou Senior Member

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    Phenylalnine was not a problem for me until after I came down with me/cfs. Any kind of soda, chewing gum, mint, etc with this amino acid now causes near instant and severe brain fog.

    I know this must be rare, but anyone else here have this problem? For those of you knowledgeable in biochemistry, can you make any sense of this, or have suggestions that might help? Thanks.
  2. SOC

    SOC Moderator and Senior Member

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    Phenylanline makes me wired and jittery rather than giving me brain fog. I avoid it like the plague.
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  3. Lou

    Lou Senior Member

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    I could have added wired and jittery, it certainly does that to me, too. Have you ever tried to run down WHY it has this effect on you?
  4. SOC

    SOC Moderator and Senior Member

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    I asked my GP years ago and got one of those dismissive responses like I was imagining it. "If you had a problem with phenylanaline you wouldn't have made it to your age." :rolleyes: So I haven't bothered to follow it up. I just avoid it. I've always been curious, though. Seems like it ought to mean something.
  5. Lou

    Lou Senior Member

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    Yes, probably means we have too much of it already, but what is causing it to accumulate or not break down is the question in that case. Don't you just hate it when you have a symptom that seems the one 'white raven' that practically doesn't exist elsewhere in nature? And it might be that solving the mystery could help with other me/cfs problems.

    Can you remember if it has always been a problem for you or if it started after me/cfs?
  6. SOC

    SOC Moderator and Senior Member

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    Not clear if it was post me/cfs or not. My "official" sudden onset viral illness occurred after I first noticed the phenylalanine problem. That said, it's quite possible that I've had me/cfs much longer, but my first major crash was caused by that viral illness. I certainly had some me/cfs symptoms before my "official" onset.

    So, I don't know for sure, but I suspect my phenylalanine problem started in the true early days of my me/cfs.

    It certainly seems possible that we naturally have higher levels of phenylalanine so that adding extra in the form of aspartame, for example, is just too much for our systems. But who knows? o_O
  7. alex3619

    alex3619 Senior Member

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    I think its about phenylalanine detox, not phenylalanine. The detox mechanism, involving biopterins, is often under a lot of stress, and this system working right is suspected as being essential for proper vascular function. If phenylalanine detox strains biopterin availability, then not enough is left for vascular health: blood vessel dilation is compromised, which means decreased blood to the brain, which induces brain dysfunction. I hope to try adensyl cobalamin to see if it helps me with this, but there are no guarantees. We need the biochemisty investigated and not have to rely on hypothesis and test with ourselves as guinea pigs.

    I have forgotten the details of a lot of this which is why its sounding a little vague. The treatment for PKU is another potential treatment for ME and CFS patients who have this problem.
  8. Lou

    Lou Senior Member

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    Hi Alex,

    Good to see you back here! May I ask if you get the 'wired and jittery' or brain fog or both these symptoms from phenylalanine?

    Thanks for you comments, I'll look into PKU treatments, see if any might apply in my case.
  9. acer2000

    acer2000 Senior Member

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    You know its interesting. I became very sensitive to "tyramine" which is another amino acid/byproduct once I got sick with ME/CFS. I get the whole mess of symptoms (elevated hr, migraine, sweats, etc) if I eat foods high in it. I basically have to eat like I am on an MAOI drug, even though I am not. Never had that problem before I got sick. I wonder if I am also sensitive to Phenylalnine.

    EDIT: I haven't read in detail, but it states in this article/post that PKU can be a secondardy consequence to BH4 metabolism problems. Perhaps the development of "PKU-like" symptoms in CFS is somehow related to this?

    http://en.wikipedia.org/wiki/Phenylketonuria
    Lou likes this.
  10. aquariusgirl

    aquariusgirl Senior Member

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    yeah... bh4 metabolism...thats yr bottleneck...
    http://emedicine.medscape.com/article/949470-overview
    there's genetic problems that cause BH4 deficiency & then there is functional BH4 deficiency caused by peroxynitrite, inflammation etc
    Your doctor does not appear to understand the difference....
  11. alex3619

    alex3619 Senior Member

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    Its not clear that I do, and its not clear that I don't. How many of us with this problem have high blood pressure and OI is what I am wondering.
  12. SOC

    SOC Moderator and Senior Member

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    I do.
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  13. SOC

    SOC Moderator and Senior Member

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    What else is new? :rolleyes: I've wondered a lot over the past 8 years why exactly I'm paying doctors who know less than I do and who don't bother to do any research.

    Done ranting...

    That info on BH4 deficiency resonates quite a bit with me. The question is: what do I do with this information?
  14. aquariusgirl

    aquariusgirl Senior Member

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    cardiologists at johns hopkins are using bh4 to treat blood pressure or cardiac issues .. you can google that....also it's important for serotonin and dopamine ...BH4 is hard to get hold of these days..Merck & biomarin locked up the supply.
    Lou likes this.
  15. Valentijn

    Valentijn Activity Level: 3

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    To prescribe the drugs that you ask for and run the labs that you want? :D
  16. SOC

    SOC Moderator and Senior Member

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    Hah! Like that works.....not. :D I can't even tell my GP that my specialist wants a particular test run and get it. I have to get paper scripts mailed from my specialist to take to the local lab.

    I suppose I don't need to say that our local medical monopoly is very evidence-based medicine and thinks ME/CFS is a psychiatric disorder that shouldn't be enabled by providing medicine and lab work. :rolleyes:

    Fortunately, every decade or so I happen upon on doc in the system who actually manages to think for him/herself. Unfortunately, they don't last more than a few years before moving on.
    Valentijn and Lou like this.
  17. Lou

    Lou Senior Member

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    Not sure I understand Merck monopoly; is BH4 by prescription?
  18. Lou

    Lou Senior Member

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    A few years ago my bp went from low to high, not sure of the cause but it was during experiment with Yasko protocol. I don't have OI.
  19. aquariusgirl

    aquariusgirl Senior Member

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    Yeah ...kuvan is Rx bh4

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