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MarcB

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About MarcB

  • Rank
    Advanced Member
  • Birthday 03/09/1946

Profile Information

  • Gender
    Male
  • Location
    St. Paul, MN
  • Interests
    Family, friends, & our dog Margaret, who is also family.

    Monitoring PD forums, doing research, reading, political junkie, exercising, -- just trying to stay healthy.

    My PD likely caused by Agent Orange - in Vietnam from 10/66 to 10/67.

    Diagnosed 7/2011. I take no PD drugs.

Recent Profile Visitors

176 profile views
  1. longvida curcumin & nilotinib

    As this medication being approved for treating PD by FDA? Probably not for 6 - 8 years. Does curcumin have the same beneficial effect like Nolitinib? No. https://examine.com/supplements/curcumin/ MarcB, are you participating in the Nolitinib study? No. How long have you been taking this medication? 2 mos, 120 mg/day. Has is helped to slow down your PD? No effect - yet. Dear Pharmacist, will any MD prescribe Nolitinib for me,despite not being approved by FDA for treating PD. No Marc
  2. longvida curcumin & nilotinib

    Boo-hoo, but thank you.
  3. CBD Oil

    Try Charlotte's web
  4. Does Curcumin prolong the QT interval? Is it dose or formulation dependent? Are EKGs the only way to know if you're at risk? Are home EKG machines reliable? I'd like to start, but I'm taking 60mg 2 X day of Nilotinib.
  5. IMHO seems likely Curcumin, especially Longvida, is helpful for pwp. I'd like to start, but I'm taking Nilotini and a primary concerns with Niotinib is that it is known to prolong the QT interval.b. This link says Curcumin prolongs the QT interval. I've read a lot about Curcumin, but never anything re QT prolongation. Have you? (They have a fix for that problem. "Here we show a curcumin encapsulated lipopolymeric hybrid nanoparticle formulation which could protect against QT prolongation and also render increased bioavailability and stability thereby overcoming the limitations associated with curcumin.) So, my question is, can I take Longvida Curcumin and Nilotinib? https://link.springer.com/article/10.1186/1477-3155-11-40
  6. Does anyone know the ratio, i.e., how much 5-HTP should be taken with 100% pure L-Dopa? I bought 50 g of 100% pure, pharmaceutical grade L-Dopa (and 25 g of 5-HTP from Nutrivita,) but as I read more, I find many pwp feel taking Mucuna Prueiens is preferable to taking pure L-Dopa, but I am hard pressed to throw both packs out. What is the proper starter dose of each?
  7. This works for me...what works for you?

    Yes, the VA accepted my claim in 2011. They give me $800/month for it. Seems fair to me ------------------- not.
  8. This works for me...what works for you?

    The VA agrees my PD is likely from Agent Orange. The chemical engineers who designed this stuff, and the Pentagon that bought and approved its use, had to know that anything that could defoliate a jungle in 4 or 5 days would be toxic to humans. They dumped 18,000,000 gallons on their own soldiers.
  9. This works for me...what works for you?

    Maybe the best, most up to date understanding. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5421223/
  10. This works for me...what works for you?

    What are the concerns with Melatonin? Will continual use cause one's body to stop making it?
  11. Thank you, thank you for such a well written and thorough description.
  12. When a PWP ask a doctor if they should start medication at the onset of diagnoses or the onset of symptom severity, the most common answer they get is, ‘It is completely up to the patient.’ This answer is very frustrating because at the time of diagnosis, pwp know zero. "Your guess is as good as mine." It's like asking a six year old if they want deep brain stimulation -- or, for that matter, if they think they should take sinemet. What does the data show? Is the jury in on this?
  13. Anyone taking Nilotinib? Compare notes?
  14. Your expertise of Parkinsons, what if?

    We all like to believe our neurologist knows best, yet competent neurologists disagree on this important issue, so asserting a position based on what your/one neurologists says is not the best way to make your decision. One should do enough research to be confident they have found, read and understand the newest data or, it's easier and more reliable to look at what is the consensus of the PD organizations and university/research centers. It's like, you can always find scientists who deny climate change, so what matters is, what is the consensus? Over the years, I've seen 3 neurologists at the Minneapolis VA all of whom are also professors at the U of MN and they disagree with each other on this central issue. I'm 71, was diagnosed 6 years ago, and took the path until very recently of holding off on L-Dopa meds, which I now regret. I'm satisfied the recent data and the consensus is you are better off to start sooner than later. https://www.youtube.com/watch?v=utVZaOLUiDo&t=6s https://vimeo.com/191664871
  15. Thank you, thank you.
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