It is definitely helping my PD but a friend has severe lewy body dementia and dystonia (neck forced down to the chin). The medication she was on had to be stopped as it made hallucinations much worse so wondering if she could try Zandopa.
If someone out there is trying that for lewy body disease could they please let me know if it helps the neck pain and central stiffness. She is not depressed and the medication given her that made her worse was for depression.
My aunt had LBD; Parkinson's meds made her worse. I don't know which one(s), but it accelerated her decline.
That's what I've read as well. Thought Mucuna might help if in the natural powdered whole bean state. Her neck/tremor of the head and pain are very similar to mine and MP helps that so much but also relieves the anxiety quite a bit so was hoping. I
Since MP contains levodopa, which may be detrimental, it seems like a great risk, IMO.
Yes I agree. From what I've read PD with LBD treatment differentiates with each person just as PD or PD with dementia has variable symptoms and different treatments for them. Often it's found out during trial and error that some can tolerate certain drugs, including levodopa, while others cannot. Just wondering if anyone with PD with LBD is on levodopa and has tried Mucuna.
nhs.uk/conditions/dementia-...
Thank you....makes things pretty clear. She told her doctor she wasn't depressed and he gave her anti-depression medication that sent her over the edge with hallucinations. Go figure! I guess Mucuna could also mess things up.
I do wonder what the effects of Vitamin B1 or Mannitol would be on LBD.
What we are up against. Parkinson's Pathology: Alpha synuclein. Lewy Body. 
My gran has Parkinsons and Dementia
The Value of a Good Compounding Pharmacist, a True Story
Antidepressant
"Papa! Which is your shaky hand?" or Love will get us through. 
