Parkinsons with Lewy bodies

[dfdffdf]

Hello everyone! Just wondering- has anyone had any experience using high dose thiamine for parkinsons with Lewy bodies?

Also- has anyone had any success in any way trying to get hallucinations under control?

Thanks a lot.

Steven

[WinnieThePoo]

What is Parkinson's with lewy bodies? Lewy bodies are the original post mortem diagnosis for Parkinson's disease.

[dfdffdf in reply to WinnieThePoo]

The neurologist letter says a type of Parkinson’s that is Lewy bodies based?

[WinnieThePoo in reply to dfdffdf]

I think it's probably a reference to lewy body dementia, especially since you mention hallucinations. Lewy bodies are clumps of alpha synuclein (some recent dispute about this) which are hallmarks of Parkinson's and a condition known as lewy body dementia.

All PD is associated with lewy bodies and alpha synuclein, (even if lewy bodies are not just clumps of aggregated alpha synuclein)

[dfdffdf in reply to WinnieThePoo]

Yeah that’s what I think my dad has. I think his neurologist is a little reticent to say the word dementia directly.

He does not have a tremor though. Is on madopar for muscle stiffness but can still move pretty well.

The main issue is hallucinating at the moment. The exelon patch seems to be keeping it a little more under control now.

Just wondering though - do most people wh are using b1 therapy on here use it for movement issues? Does anything address hallucinations that you’ve heard of?

[WinnieThePoo in reply to dfdffdf]

You'd have to ask the B1 boys but it seems more linked to dopamine production. If i were looking for a long shot alternative option i'd look at Bacillus subtilis PXN® 21

[dfdffdf in reply to WinnieThePoo]

Have you been using this personally and seeing any results?

[WinnieThePoo in reply to dfdffdf]

Not yet. But i believe the microbiome is a big player in PD and other brain conditions and the recent research on this strain is interesting

[dfdffdf in reply to WinnieThePoo]

I will look into it thank you.

Also- I was talking to a doctor in the USA yesterday who recommended an off label prescription for AMX0035 by Amylyx which is a drug for ALS but he was certain it would work for alzeihmers as Parkinson’s neurodegeneration as well by targeting neuro inflamation. Have you heard about this?

[WinnieThePoo in reply to dfdffdf]

It sounds a very promising drug - for ALS and PD. I am waiting for an update on the science of parkinsons about it.

I had thought though that it is a new experimental drug, and not a repurposed drug, and is therefore not available for any existing condition off label

[Bashert0302]

Hi Steven! I’m sorry this isn’t an answer to your question, but I am curious how does one get diagnosed with Lewy Body PD?

I hope someone can guide you to an answer! Erin

[dfdffdf in reply to Bashert0302]

Hey Erin. Basically my dad had vision problems for years. People thought it was a problem due to his actual eyes or maybe a side effect of his sleep apnea but sight problems gradually progressed to hallucinations and it became pretty obvious there was a neurological issue. He did some cognitive testing, an mri and dat scan and the lack of dopamine combined with hallucinations I think got the diagnosis of Lewy body dementia with Parkinsonian traits.

[dangilio]

hi, my mom was diagnosed lewy body 2 years ago. i spoke with dr costantini and he say that b1 could be effective also with lewy body dementia even. he suggest me to give a try and so we do. she take madopar levadopa b1 and cbd oil. for the moment she is fine even if she stay all time in bed.

[dfdffdf in reply to dangilio]

Hey has she been doing the same medication for two years ? Or did she start b1 and cbd oil later? What differences did you notice in symptoms from using b1 and cbd oil? Does she hallucinate? Sorry so many questions...

[dangilio in reply to dfdffdf]

yes about two years. she start everything in the same time.maybe b1 a little later..4 month . she started with stifness and after a fall and antidepressant she start also hallucination..then stop antidepressant and start the current therapy and recover a lot

[dangilio in reply to dangilio]

she is also in keto diet