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L-dopa for ME/CFS? Prescribed for a Patient on Twitter

Discussion in 'General ME/CFS News' started by Patient4Life, Oct 12, 2019.

  1. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    ME/CFS patient on Twitter prescribed L-dopa. I am thinking this is a pretty risky drug to utilize considering what it does to Parkinson's patients long-term. Any thoughts?

    The L-dopa Conundrum via Journal of Parkinson's Disease, August 26, 2013

    Just an added note, Lewy Body Dementia is running on my mother's side of the family. My mother, her aunt, and most likely one of her sisters had LBD. Parkinson's and LBD are related and the difference between them is the part of the brain where the cells are dying. LBD patients develop a Parkinson's like rigidity, and many Parkinson's patients develop dementia. LBDA.org has stated that LBD is the second most prevalent dementia and is often misdiagnosed, as it was with my mother, as Alzheimer's. LBDA.org also states that LBD is more prevalent than Vascular Dementia although the organizations that support Vascular Dementia state that it is the 2nd most prevalent form of dementia. Many drugs and OTCs used for Alzheimer's and other dementia patients will accelerate LBD which we believe happened to my mother. We think she was prescribed a drug used for diarrhea prior to her experiencing hallucinations and becoming erratic; finally she was diagnosed with Alzheimer's.

    I guess my point in posting this article is that it does not seem to be a drug ME/CFS specialists should be prescribing as there may be complications out there just waiting to rear its ugly heads in ME/CFS patients and those at risk for other disorders like I am.

    Again, just wanting to know what others think about L-Dopa in general and for ME/CFS patients.
     
    Annamaria and alktipping like this.
  2. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Did it work for/help the patient? No sense doing a cost/benefit if we don’t know if it worked....
     
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  3. Trish

    Trish Moderator Staff Member

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    I would ignore what some random person says on Twitter.
     
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  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    There are some people who post sensible stuff on social media.eg Tom K Sten H for example but there’s a hell of a lot of rubbish on there.
     
  5. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    you should see the ME/CFS Facebook groups.....
     
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  6. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I have seen. My local one is closed and has admin works pretty well. I have followed one open group that attracts a lot of people many undiagnosed/newly diagnosed and uninformed where all sorts of weird stuff is discussed. Actually some pretty weird comments come up on posts from ME Association/AFME as well. I get a bit frustrated that people don’t seem to educate themselves but then I forget how much utter claptrap there is out there about ME much of it from ostensibly credible organisations like NHS, MAYO clinic, Action for ME etc etc etc etc.
     
  7. Londinium

    Londinium Senior Member (Voting Rights)

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    Literally no reason to prescribe to ME/CFS patients for their ME/CFS. AFAIK, there has been no mechanism proposed for ME/CFS that indicates L-Dopa as a possible intervention. Avoid.
     
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  8. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Maybe they had Parkinson’s Diagnosis as well otherwise it seems the Dr is using them as a guinea pig.
     
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  9. Londinium

    Londinium Senior Member (Voting Rights)

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    Yeah, I tend to wince when you get comments whose certainty seems to be inversely proportional to the actual amount of evidence for their claim.
     
  10. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    It is someone that posted today on Twitter on the #mecfs hashtag and no, they do not have Parkinson's. This is what I think, they are a guinea pig.
     
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  11. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    ugh...I know. My former Primary suggested Mayo Clinic for Fibromyalgia. I told him that the Mayo Clinic was clueless when it came to Fibro.
     
  12. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    The patient was recently prescribed L-dopa by their ME/CFS "specialist".
     
    Last edited: Oct 12, 2019
  13. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    It is a professor at SSU, which is either Sonoma State or Savannah State. An ME/CFS blogger. This person seems to be greatly misled.
     
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  14. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    there are a lot of possible explanations including misunderstandings. I reckon It’s not going to be productive for us to speculate further.
     
    Annamaria, Trish, Milo and 1 other person like this.

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