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

Patient4Life

Senior Member (Voting Rights)
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

Few episodes in medical history are as dramatic as the “discovery” back in the 1960’s of L-dopa therapy. University of Rochester Medical Center’s Karl Kieburtz, an authority on the history of the drug, describes L-dopa as “one of the most potent therapies in all of neurology – indeed in all of medicine – think about it: to take someone who was essentially rigid like a stone…and enable them to get up and walk and function…it’s unbelievable.” But clinicians soon discovered that L-dopa exacted a price for the miracle. In time, patients displayed disabling side effects, notably involuntary writhing movements called dyskinesias, and so-called on-off fluctuations – in which the medicine’s power to combat Parkinson's disease suddenly vanished without warning. Neurologists euphemistically called these L-dopa-induced side-effects “motor complications” (MCs).

What, then, does this case reveal? It tells us that even though his disease was not progressing like regular PD (rather, it resulted from a one off event), he still developed MCs in the damaged side of his brain. Pita Lobo’s study joins other documented cases of “non progressing” Parkinsonism, which displayed serious and permanent MCs – including the California “Frozen Addicts,” and the epidemic of von Economo’s encephalitis.

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