My Thiamine journey

Started with Thiamine yesterday after email exchange with Dr Constantini.

I am Tremor dominant autonomic diagnosed about two years, 64

Reluctant to take prescribed Sinemet.

Have tried various herbal sedatives such as Valerian.

Looking like we all are to address the root cause . Not just relieve the symptoms.

Have needed to dust off my rusty neuroscience training to research this Parkinson’s syndrome.

Thiamine therapy has a logic going for it, even though the science is a bit thin.

Can we help with this by giving some structure to the data spread out over all the threads? I am seeing a spreadsheet at least.

Any support/suggestions?

[MBAnderson]

already done. see easilly post

healthunlocked.com/parkinso...

[Hidden in reply to MBAnderson]

Seen this. it’s a good start but I was seeing something a bit more structured

[MBAnderson in reply to Hidden]

A spreadsheet would be a good idea, but then wouldn't we'd have to list most of the variables, i.e., most or all of the symptoms and then gradients of each? What do you have in mind as far as that goes? Would it have to be on Google docs or another site?

[Hidden]

We should keep it as simple to start with and will have to watch the legal side. Probably use private messaging on this site. If a member wants to submit data they ask for a data entry form.

The statistics only are published, say monthly never the database. The database never gets put on the web.

[KERRINGTON in reply to Hidden]

Some of 'us' only have basic computer skills. Is private messaging merely the exchange of private email addresses ?

[Hidden]

Suggestions

Year of birth

Date of diagnosis month and year

Predominant motor symptom

•Tremor

•Rigidity

•Bradykinesia

Non motor symptoms

•Constipation

•Drooling

•Loss of sense of smell

Date started Thiamine day month year

Updrs score at start

Initial dose milligrams

Current dose milligrams

Current updrs

Intermediate doses

Other current medication

•Levodopa/+inhibitor

•Agonist

•Mao/COMT

Exercise

•Vigourous

•Skilful

•Competitive

Supplements

•Magnesium

•B6

•B12

•Zinc

•

[marion11005 in reply to Hidden]

I just received my thiamine order today and was just thinking about making a similar control list to chart my own progress. I decided to assess my progress by grading my symptoms according to a 1-5 system with 1 being poor and 5 being normal.

[Hidden in reply to marion11005]

Have you seen the updrs. It’s a bit of a hitch pitch but it appears to be the standard rating method?

[Hidden in reply to Hidden]

Compact version of Updrs

Attached

viartis.net/parkinsons.dise...

[20fatcats in reply to Hidden]

Thank you for posting that. It is very helpful and I am looking forward to filling it out and keeping it as a record of where i have been to where I am at.Thanks

[MBAnderson]

I, for one, think it's an excellent idea because if we are going to list out all the symptoms and supplements, it may be that we can draw correlations beyond just those to thiamine.

A spreadsheet that only correlated outcomes to thiamine usage would be pretty straightforward. People would grade the severity of their symptoms from one month to the next (perhaps on a scale of 1 to 10 since it would be less subjective and more refined than the UPDRS) and we could see what kind of correlations there would be from the point they began taking thiamine.

I have a couple questions, though.

I don't understand how we do this to private messaging. If people are filling out a data form, won't that require somebody to collate and/or reenter data? Would it be easier if everybody had access to the same spreadsheet and filled in their data themselves? There are plenty of free message boards that are password protected.

What are your legal concerns? It seems like a spreadsheet is just a simplified quantification of the information were already providing to each other.

I don't know that there is any other place where people are compiling this kind of data in one big spreadsheet and I can imagine that after a year or so, it would provide a lot of valuable information, maybe enough for someone to do an RCT study of thiamine.

It is something of an ambitious project, but I think well worth the effort to figure it out.

[Hidden in reply to MBAnderson]

With the right volunteer It would be possible to trawl through the existing posts. And message for the missing bits. Then build the spreadsheet

Dr C might have someone doing it anyway ?

[meandpd]

Have folks heard of Dr Laurie Mischley? - she's a naturopathic doctor in USA who has compiled a lot of data on CAM treatments. If we can get her interested in a B1 study she has the expertise on compiling data I think. bastyr.edu/people/alumni-re...