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Everything posted by MarcB

  1. 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
  2. If you go to the Parkinson's forum on the website HealthUnlocked and put thiamine in the search window, you'll find many comments from PWP who are reporting high doses of thiamine are benefiting them greatly. Dr. Constantine, in Italy, is following 2,500 patients on Thiamine HCL and reporting good results on nearly all of them. Is your organization aware of this? If not, you may want to check it out because it's the most encouraging information available. While it's all anecdotal, although the doctor has some studies, it's too many and too consistent to be ignored.
  3. MarcB

    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
  4. I've been following Dr. Constantine's work, in Italy, where he is following 2,500 patients on high doses, usually 4 g a day, of thiamine HCL and is reporting very positive results. I also participate in the Parkinson's forum on the website healthunlocked where many of the participants are also taking high doses of thiamine HCL and are also reporting significant reduction in symptoms. Have you heard of this and/or are you following this, i.e., do you have an opinion about it?

  5. MarcB

    Recent Alabama study

    Dr. Okun, are you aware of, or have you following, Dr. Constantine's (in Italy) use of high dose, 4 g per day, of thiamine HCL? He is following 2500 patients who are reporting very good results. I participate in the Parkinson's forum on the HealthUnlocked website and the vast majority of those who are using thiamine HCL are also reporting very good results, i.e., they say it is substantially reducing their symptoms.
  6. MarcB

    Recent Alabama study

    Regarding your position that there is no reason to delay beginning carbidopa/levodopa therapy, please let me know what you think the flaw in my reasoning is. Whatever are the consequences of beginning Sinemet, be it dyskinesia after 5 years or loss of effectiveness after 10 years, I will be that much older when those conditions occurs if I start later. In other words, I would rather be 80 years old when it loses its effectiveness than 70 years old?
  7. MarcB

    longvida curcumin & nilotinib

    otolorin, greetings. Regrettably, after I read the pharmacist reply I didn't come back to this site. I participate in the Parkinson's forum on the healthunlocked website. I believe there's a doctor in New Hampshire name is Dr. Bennett who will prescribe this off label. Doubt anyone else will. I take a dozen other supplements so I'm not able to tell what anyone of them is doing for me. I believe I am progressing slowly, though, but it may be due to just plain dumb luck, a robust nondrug regimen, i.e., exercises, etc. Who knows? My email address is marcbanderson@gmail.com Marc
  8. 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?
  9. MarcB

    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.
  10. MarcB

    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.
  11. MarcB

    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?
  12. MarcB

    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
  13. MarcB

    longvida curcumin & nilotinib

    Boo-hoo, but thank you.
  14. 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.
  15. This, the most common answer, " When assessing whether someone should start medication at the onset of diagnoses or the onset of symptom severity, it is completely up to the patient." 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. This non answer can only mean the studies have not brought the jury in on this, the central question, otherwise, how does it happen that the PD healthcare community takes opposite or no position on this issue?
  16. MarcB

    CBD Oil

    Try Charlotte's web
  17. 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?
  18. 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?
  19. MarcB

    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.
  20. MarcB

    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.
  21. MarcB

    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/
  22. MarcB

    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?
  23. Thank you, thank you for such a well written and thorough description.
  24. Anyone taking Nilotinib? Compare notes?
  25. MarcB

    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