August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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  1. Kiwi Jack

    Kiwi Jack

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    I have several gene mutations and it appears my methylation is compromised is several different areas; glutathione, detox, neurotransmitters, gut, others.

    I'm wondering if dopamine might be one of the bigger and more significant issues relating to my symptoms. I did an organic acid test and my HOMOVANILLATE result was 10 on a range of 8-50 so 5%, which appears to mean my dopamine is very very low. I have all the symptoms of low or deficient dopamine and I have them to the extreme.

    Is the solution to take L-dopa which is the direct precursor to dopamine, or L-tyrosine which is the precursor to dopa? And how long should it take to get a response? I read that you should feel it fairly quickly. And I assume if not, then this dopamine deficiency is not likely the primary cause of my symptoms, although it could still be part of the bigger picture.

    Anyone else had any experience with this?
     
  2. PeterPositive

    PeterPositive Senior Member

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    Tyrosine should help you if that's the problem.
    I have taken it and quickly made me overly nervous and snappy. Definitely not my thing :) But it works, no doubt.
     
  3. trails

    trails

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    I, too, suspect that a dopamine deficiency has something to with our illness. I suffered with progressively worsening muscle fatigue and PEM for about 10 years, but those were pretty much my only symptoms and I could live with them. Then a little over a year ago, virtually overnight, I was hit with the full range of other symptoms - persistent and overwhelming fatigue, interrupted sleep patterns, significant cognitive issues, nerve pain at base of neck and across shoulders, etc.

    Interestingly, all of the other symptoms (other than PEM) appeared within a month of quitting cigarettes and have persisted without letup. Cigarettes, of course, raise dopamine levels. I actually suspect that the cigarettes, through this mechanism or another, were masking these symptoms for a long time.
     
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  4. Battery Muncher

    Battery Muncher Senior Member

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    I'm also quite certain that I have low dopamine. I feel this plays a large role in my cognitive issues.

    I've tried L-Tyrosine before. It was slightly beneficial for a day or so, but quickly stopped working. Overall, it did nothing to resolve my cognitive issues.

    I have had slightly more success with nicotine. I've never smoked, but I tried using NRT (Nicotine Replacement Therapy) products like Nicorette etc. See here: http://forums.phoenixrising.me/inde...-neurodegeneration-activated-microglia.29337/

    All of these have only had a mild effect. It's clear to me that my problems stem from a deeper underlying issue, and low dopamine is simply a surface expression of that.

    It's worth noting that I am the sort of person that does not really experiencea response to the vast majority of supplements I've tried. If you respond heavily to most substances, you will likely have a very different experience from me.
     
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  5. PeterPositive

    PeterPositive Senior Member

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    Out of curiosity what dosage have you used and for how long?
     
  6. Kiwi Jack

    Kiwi Jack

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    I'm getting feedback that Dopa is more effective than Tyrosine, assuming that dopamine deficiency is in fact the problem. But also assume everyone's Dopamine could be cause by a different problem; genes, absorption, not producing Dopamine, receptor issue, etc. I spoke to one nutritionist who said standard Dopa supplements range from 60-120 mg per day, but some folks on prescription get up to 1,200 mg per day, mega dose. So the dose range can be very broad. No easy answer here. Also told if Dopamine is the problem and Dopa is the answer, response will be quick. So should be easy to experiment. I tried Tyrosine for a few weeks and it did nothing. So will try Dopa now and see if there's any benefit.
     
  7. Battery Muncher

    Battery Muncher Senior Member

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    Unfortunately, It was a couple a years back, so I don't really remember. What dosage did you use? I might give it another shot.
     
  8. traray

    traray

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    I have taken Tyrosine for pain for a couple of years now. I watched this YouTube video (which I think someone on this forum shared) and added DLPA (which I only toke occasionally when my brain felt heavy and dead) and added mucuna dopa. So now I take 1000 mg tyrosine, 1000 mg DLPA 1-3 times a day. During a Fibro flare, or when I feel one coming on I add 300 mg mucuna dopa to that. This always make me feel better, awake, less pain, etc. When a flare is winding down, I have to decrease the number of doses of all, and take out the mucuna dopa as I begin to feel better (Too much mucuna dopa makes me feel the same as not enough, tired, heavy head etc). I am taking the fact that I can no longer take the same dose everyday (since starting LDN) as a good thing, maybe my brain is starting to make more dopamine on its own when I am having good days.
    Hope that makes some sense.

    John Gray - How I Reversed My Parkinsons's Disease Symptoms
     
  9. PeterPositive

    PeterPositive Senior Member

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    As I said earlier for me Tyrosine was not good, it just made me more irritable and anxious. A couple of 500mg doses were enough to cause that, so I quit pretty soon.

    In any case 500-2000mg of L-Tyrosine a day can be used without problems, if one is not sensitive. Maybe your dosage was too low. Some people take even more. I think it is relatively safe up to 5-6grams / day, although I would speak with a physician before taking such a high dosage for long time.

    cheers
     
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  10. Battery Muncher

    Battery Muncher Senior Member

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    Thanks for the helpful and informative post, I'll keep that in mind if I decide to try it again.
     
  11. Kiwi Jack

    Kiwi Jack

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    In Canada can not get Dopa over the counter, need prescription, bummer, so much for self experiment. Will need to wait for next Dr appoint and ask.
     
  12. trails

    trails

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    If you are able to get a prescription, Jack, I'd love to hear back from you regarding the results.
     
  13. garyfritz

    garyfritz Senior Member

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    Very interesting! I don't have any tremors or other Parkinson's symptoms, but I show many symptoms of low dopamine: Low zest for life, ADD, etc. I will have to look into this...
     
  14. Grigor

    Grigor Senior Member

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    That's very interesting. I stopped smoking 3/4 before my first problems with ME. Then I got sick. An infection and never recovered. When i got sick I slowly started smoking again.

    Then years later . Doing much better I stopped smoking again. Half a year later Boom .Big relapse after a flu.Now 2 years housebound. Always wondered if there is a link. I'm obviously happy that I'm not smoking but still.
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just a quick read through this thread. Anyone used dopa macuna, a supplement which contains l dopa. I have found it hit and miss for energy but works better combined with acetyl tyrosine .

    Acetyl tyrosine is suppose to be better absorbed than regular tyrosine and a lower dose can be used.

    I have found both need to work irregularly as constant use they lose their effects.
     

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