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MarcB last won the day on September 28 2017

MarcB had the most liked content!

Community Reputation

20 Excellent

1 Follower

About MarcB

  • Rank
    Advanced Member
  • Birthday 03/09/1946

Profile Information

  • Gender
  • 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

418 profile views
  1. Recent Alabama study

    Dr. Okun, I understand your position along with most of the other major Parkinson organizations, the Mayo Clinic, the Cleveland clinic etc. has been there is no reason to delay the start of carbidopa levodopa therapy. Does this most recent study from Alabama change anything? https://parkinsonsnewstoday.com/2016/08/04/researchers-discover-why-l-dopa-stop-working-parkinsons-seeking-prolonged-treatment/#at_pco=tst-1.0&at_si=5a8b566bbfca2f61&at_ab=per-2&at_pos=0&at_tot=2
  2. Please resolve a controversy on a Parkinson's forum. Some PWP site this study is evidence that long-term use of C/L therapy does not induce dyskinesia, but that it is the ever-increasing dose over time that does. “The modern pre-levodopa era of Parkinson’s disease: insights into motor complications from sub-Saharan Africa.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4163032/ Other studies say that it is the up-and-down spikes caused by the immediate release administration of Sinemet that induce dyskinesia. What is your position?
  3. URSODIOL - A Potential New Drug for PD

    I participate in a different forum now, where I have quite enough friends, which is very enjoyable because it's a large group and everyone shares their experience and research without all the acrimony. There are a lot of robust discussions because of course people disagree and there's two schools of thought on most Parkinson's therapies. You'd like it. As a diligent and knowledgeable researcher, your input would really benefit a lot of people, but I can't tell you which forum it is because you know who might jump on just so they would have a bigger audience to aggravate. ha.
  4. URSODIOL - A Potential New Drug for PD

    I used to read this forum religiously, but stopped because this running debate over TUDCA had become over the top tedious. I just tuned back in assuming everyone had finally gotten bored repeating themselves and moved on, but not so. The simplest concept and most obvious observation that every person on every Parkinson’s forum immediately figures out is that some drugs and supplements work for some people and not others. Is that really so hard? If a particular drug or supplement does not work for you, the only intelligent thing you can say about it is that it does not work for you. It is fundamentally ignorant to argue a supplement doesn’t work because it doesn’t work for you. The TUDCA skeptics, for example, have written many posts telling us what has worked for them, yet I don’t see anyone questioning the veracity of their comments. Everyone who reads their posts has the class to take them at face value, yet for the better part of four years now and the better part of 47 pages, they have disparaged Mr. Fritz insisting that TUDCA does not work - even though there are others who say it does. The only conclusion one can draw is that they are not so much interested in teaching and learning, that is, helping other PWP as they prefer being argumentative. “What does TUDCA do?” It helps some people with Parkinson’s disease. Is that simple enough? I believe Mr. Fritz must enjoy this endless back-and-forth as much as the naysayers do, otherwise he would’ve quit responding long time ago. Get a life, people. See you next year.
  5. Curcuma and Coconut Oil in Parkinsons

    I've read, altho I don't have the link handy, that Curcumin may prolong the QT interval. What's your opinion?
  6. 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
  7. longvida curcumin & nilotinib

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

    Try Charlotte's web
  9. 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.
  10. 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
  11. 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?
  12. 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.
  13. 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.
  14. 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/
  15. 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?