check in, how are you doing? I’m 3 months in and was not feeling anything, however in the last week I feel like I’m improving! Balance is better, strength is MUCH better, fuzzy brain gone and anxiety is so much better! Maybe I was slowly getting a little better but this week I feel so good!
Buntanetap trial people: check in, how are... - Cure Parkinson's
Buntanetap trial people
Wow! That is great news!! I hope your improvements and symptoms are indeed from the trial medication! I was in the Roche/Prothena trial for 5 years and never experienced such a positive change. Fingers crossed improvements continue!!
Brilliant! I am in France and as far as I know, butane tap is not tested here. So I am very keen to hear about the results you get. Keep on posting! Thanks
Great news! I hope the improvements continue. Are you only taking the buntanetap during the trial or also your other meds or the thiamine?
Do you know for sure you are taking the buntanetap is it random trial ?
I don’t know if I am getting placebo or not
Is tremor also improved. What's your age and when we're you diagnosed.
Hopefully I'm getting placebo. No question that I am worse than when I started in January.
Natural progression to such a degree would even be odd within 3 months on placebo
I'm happy to hear about your improvement. My first pill was April 18th 2023, so I think it's too early to tell yet for me.
I knew I had Parkinsons in 2018 (though I knew something was wrong for at least 3 years prior) and was officially diagnosed in 2019. I started taking Sinemet and Selegiline (MAOB inhibitor) May 2022, and that has greatly helped my balance.
I have been taking a weightlifting class twice a week for years, so strength hasn't really been a problem for me.
I have never had a problem with fuzzy brain, but I'm still working so I am using it a lot (use it or lose it) plus I have been taking Citicholine since 2019, which supposedly both makes Mucana pruriens and/or Sinemet be more effective and is supposed to help with cognitive impairment.
I have been using CBD oil for anxiety for several years--it's controlled it well for me.
My main symptoms are bradykinesia, rigidity and pain. The Sinemet/Selegine addresses these well for me, and I can tell when the medicine wears off. I'm looking forward to see, if I have the real drug, if it addresses these symptoms.
here’s hoping you see improvement too
I'm going to wait until I am done in July before commenting any more about my experience, but I am glad you appear to be improving. 🙂
Its best if people don't comment as it may effect the results of others.
Awesome, how do you feel now?