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Everything posted by MarcB

  1. 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?
  2. 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.
  3. 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.
  4. 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?
  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. 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. 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.
  9. 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?
  10. CBD Oil

    Try Charlotte's web
  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. 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. 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.
  14. 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.
  15. 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/
  16. 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?
  17. Thank you, thank you for such a well written and thorough description.
  18. Anyone taking Nilotinib? Compare notes?
  19. 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
  20. I'm taking 60 mg twice daily of Nilotinib and would like to add Rasagiline and Ropinirole.
  21. Thank you for your thoughtful and thorough reply.
  22. I just learned about AtreMorine, which surprises me since I do a lot health/PD research. If anyone is taking this or has researched it, please share. I’m tempted to try one bottle. Yesterday, I followed AtreMorine’s testimonial link to Facebook, went to every person’s own Facebook page to insure they were real people, sent each a private message asking if they still feel as strongly about it. I’ve heard back from two who both raved about it. Note the scatter charts and graphs in the "scitcentral" link. https://atremorine-viaphyt.com/ http://www.scitcentral.com/download.php?journal=20&article=75&file=documents/a777c18398327ec98bfbe9cf8a92d4bb.pdf https://www.ncbi.nlm.nih.gov/pubmed/28190394
  23. I've researching it all day and have now soured on it.
  24. I just read all the replies from Bazillion's post 4 mos ago. Not encouraging. "As promised K........ and I have been doing some research around Atremorine and Ramon Cacabelos. In short, we are not convinced by either of them! Beans and in particular Vicia faba (Broad beans) do contain dopamine precursors (like levodopa). However the precise amount of levodopa in each bean/plant is hard to control and therefore this type of natural supplements can be unreliable. There is an official response from Parkinson's UK about AtreMorine. Kirsty and I are in complete agreement with it. Please see below: “AtreMorine is a supplement made from broad beans (Vicia faba). Broad beans can provide a natural source of levodopa, the chemical building-block that your body converts into dopamine and the 'active ingredient' found in some conventional Parkinson's medications. Natural sources of levodopa, such as AtreMorine work in the same way as Parkinson’s medications, which work to replace dopamine and help ease symptoms. However unlike with Parkinson’s medications which are of known doses, it’s hard to control the amount of levodopa you receive with natural sources. We would encourage anyone with Parkinson’s who is thinking about trying supplements to speak to their specialist or Parkinson’s nurse. We also urge people to be cautious when buying supplements over the internet and be aware that they are not subjected to the same careful safety testing and monitoring as approved medical treatments” We also did our own digging. What we found made us question both Atremorine and Ramon Cacabelos' "science". This is what we found (don't worry, we won't be offended if you do not read it all ) Ramon Cacabelos He did study Medicine in the University of Oviedo (Spain) and did his PhD in the University of Osaka (Japan). He has had several academic positions in the past but all quite short. At the moment he is not working in any University (so not really a professor). You can have a look at his professional profile here es.linkedin.com/in/ramón-cacabelos-garc%C3%ADa-3236b3121 He has been president of EuroEspes, a private research centre, for more than 10 years. What research outputs or what the centre does are not clear. Which scientists or doctors work on that centre is not clear either... euroespes.com/en/gallery/ Cacabelos was in the Spanish news about a possible cure for Alzheimer’s in 2012. But this has not progressed any further (I have some links in Spanish if you want to read?) Buying Atremorine K....... and I are not convinced by the reviews on the Atremorine website