Edit: The paper linked in this post has some questionable aspects. But it does offer potentially valuable information concerning the use of methylphenidate in PD.
Background: ... AntiParkinsonian Carbidopa-Levodopa, Ropinirole, and Pramipexole commonly cause progressive neural damage (augmentation) and adverse reactions such as excessive sedation, sudden passing out, and slowed cognition. This study presents a neurobiochemistry analysis regarding the world’s first long-term treatment of Parkinson’s with Methylphenidate. ... explains how Methylphenidate adjunctive therapy counteracts the adverse effects of AntiParkinsonians and how Methylphenidate monotherapy controls motor and non-motor symptoms, strengthens neural tissues, sustains alertness and cognition, and slows progressive worsening.
...
Results: Initial experimentation found that 30 mg doses of Methylphenidate overcame the adverse effects of adjunctive AntiParkinsonians. Continued experimentation later found that 20 mg doses of Methylphenidate monotherapy controlled Parkinson’s illness-symptoms better than AntiParkinsonians.
...
Conclusion: Clinicians can replace diurnal AntiParkinsonians with diurnal Methylphenidate in order to provide safer and more effective long-term treatment of Parkinson’s illnesses and Parkinsonism.
This is essentially a case report of a single individual. Here is his medication regimen:
"Six years of gradual titration resulted in an optimally effective daily regimen of: [dose-1, 3-hour MPH-IR 25 mg], [dose-2, 6-hour MPH-ER 40 mg], [dose-3, 3-hour MPH-IR 20 mg], [dose-4, 3-hour MPH-IR 20 mg], [bedtime 2 tabs Carb-Levo 10/100 mg, 2 tabs Carb-Levo ER 25/100 mg, and 2 tabs Pramipexole 0.25 mg]."
20 years without meds seems a bit unusual:
"Dr R, had progressive Parkinson’s symptoms for 37 years starting in 1985. Symptoms were reported to his Physician in 2000. AntiParkinsonians started in 2005 and diurnal MPH was prescribed from 2014 through 2022.)"
The author does refer to some favorable trials for this medication which I plan on checking into.
This part is bizarre. There is no evidence for any of this nor does the author cite any:
"People who have Parkinson’s illnesses don’t have enough Dopamine to tell the body to stop producing and stop transporting extra Thyroid hormones. Thus the extra Thyroid hormones become more and more overcrowded and die in large numbers. People who have Parkinson’s illnesses don’t have enough Dopamine to make Dopamine-based transporter cells to take away the dead Thyroid cells. Large volumes of dead Thyroid cells have nowhere to go so they become larger volumes of dead Thyroid cells. The dead cells decompose into acidic remains that absorb into surrounding neu- ral tissues. The acid weakens and erodes the neural tissues that absorb it."
Granted, this is a sketchy, uneven, paper, at best. But there might be a baby in that bathwater.
To your point about "20 years without meds": my understanding is prodromal symptoms may regularly precede a PD diagnosis by decades. This has been the case for me - anosmia, for example. The author managed to go five years before meds after "reporting his symptoms to his physician" and presumably getting a diagnosis.
Full disclosure: I'm quite fascinated by methylphenidate's (admittedly uneven) effects in my own case where I've experimented sporadically over years. When it works for me - i.e. the right dose at the right time - the effects are stellar. It's like becoming almost instantly younger for a few hours. It certainly hits the right chemistry in my case.
I'll consider adding a stronger warning in the original post should the linked paper become apparent as too ridiculous.
Concerning the drug Dr Sackner-Bernstein is endorsing:
Conflict of interest statement
"Jonathan Sackner-Bernstein owns stock in Right Brain Bio, Inc., which controls the patent(s) for use of metyrosine as a therapy of Parkinson’s disease, which were issued to JSB."
Yes, I was aware of that but my point was that the cheapest Metyrosine I could find was >US$19,000 for 250 x 250 mg capsules or $76 each., Might Ritalin (or other) at 56 cents each have the same effect?
I must have missed this whole exchange in related conversations, having just seen the talk about metyrosine. The chemical slows down metabolic consumption of extant tyrosine where the metyrosine molecule finds the the tyrosine hydroxylase that breaks down the tyrosine. Well in Parkinson's tyrosine is simply a precursor for dopamine, among a couple of other chemicals, epinephrine and norepinephrine namely. Well that means that the dopamine molecule has to have been produced and distributed in the first place. But before that can happen, the metyrosine has precluded the tyrosine from getting to the point where it can be turned into dopamine. But of course Parkinson's is when we don't produce that molecule, so there's nothing in the first place to help with pd, except on SBs theory that there is too much dopamine in his molecule has to get into a cell and break down the excess dopamine into its constituents so they can be shunted out of the cell or detoxify the effect of the excess dopamine on the cell, or whatever. Well there's a huge amount of reach and reach and reach and overreach to assume anything like that until it's tried and works in Parkinson's. Has anybody bothered to notice all that and think it through?
I feel obligated to point out problems with posted papers. With that said, I do appreciate you bringing this to my attention. C/L is not working that well for me anymore. A workable alternative would be great. I take it that it is not reliable enough for you to make it your mainstay..
Wow, that is strange reading. Is it referenced at all, as their backup for the descriptions of these mechanisms? You're right, this is really strange text.
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Now the idea of methylphenidate might be that it is a methylated phenyl, this might be somehow substituted in with tyrosine to make some dopamine past the blood-brain barrier, since tyrosine can cross the BBB. Or maybe it will be manufactured outside and be used in calming of tremors. Could it hurt to try? I don't think so, so maybe you can get your clinician to do a trial prescription, it is short acting so you could always stop it if you had some kind of reaction you didn't like. It's a creative idea.
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