Introduction: Hi all, sorry for the poor... - Cure Parkinson's

Cure Parkinson's

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Georgeofthejungle profile image

Hi all, sorry for the poor netiquette. (Popping in here and leaving comments without an introduction). My name is Ed. (George was just cuz I was frustrated everything I wanted was taken dunno why it popped into my mind). ;+)

Anyway, March 2016 I developed a tremor in my right lower arm/hand. I went to a couple of different doctors. One said Essential tremor, the other said Parkinson’s. So I just self medicated for a while. Reading here and experimented with antihistamines. (With large enough doses of Diphenhydramine I could almost completely knock out the tremor. But the side effects weren’t worth it). And:

I do that stack (figuring if Parkinson’s is destroying brain cells maybe if these things can help me grow new ones maybe I’ll break even) and LOTS of other supplements (including 4 grams Thiamine HCL) every day

I FINALLY got in to see a movement/motion specialist this past December. (They are rare around here). She said Parkinson’s and prescribed C/L 25-100mg 2 tabs three times a day. She said my tremor is quite aggressive and would take a larger dose than she wanted to give me to knock it out. But after a couple days I wasn’t noticing much improvement except on the way up and down at each dose. So I surmised it was too much. (Also doing Macuna Pruriens). So I cut back to 1 tab 3 times a day and see more improvement, though it isn’t putting any real dent in my tremor. I did mannitol for a few months, but quit when there was the controversy about good or bad bacteria. The only thing it was doing for me was improving my sense of smell.

Anyway, that's all for now. Thanks... Ed

13 Replies

Hello Ed! All the supplements on your link are great for PD. Please contact Dr. Costantini for your HDT protocol.

Welcome, Ed, in the club nobody wants to be part of...

At least, there is this site. That maintains hope and more.

The immediate release version of carbidopa levodopa seems to be what is prescribed by default. The controlled-release version is better for most people with Parkinson's – it provides an even flow of levodopa rather than a quick burst. Depending on the brand it may also be referred to as extended-release or sustained-release.

Astra7 profile image
Astra7 in reply to park_bear

I wonder why my neuro has never even mentioned controlled release. It makes much more sense. I’ve been wondering about dissolving my madapor and sipping it throughout the day, but might be difficult to keep a track.

park_bear profile image
park_bear in reply to Astra7

The controlled-release version of madopar is called "Madopar HBS".

The medical treatment of Parkinson's is all about getting the medication right. Therefore, the prescribing physician really needs to explain to the patient the controlled-release versus immediate release options and why to choose one or the other. Failure to do so is negligent in my opinion, and it seems to be the rule rather than the exception.

MBAnderson profile image
MBAnderson in reply to park_bear

What (is there) would be the circumstance to prescribe immediate release?

park_bear profile image
park_bear in reply to MBAnderson

A couple of people here have reported that immediate release worked better for them. In one case for some reason they did not tolerate the CR version in the other case the immediate release seemed to work better. I suppose one occasion to use immediate release would be someone meeting a quick boost upon arising in the morning.

Hi Ed, improving sense of smell could be quite an important observation for the potential mode of action of mannitol. Are you registered on the Clinicrowd website?

No, I'm not on a Clinicrowd website. Has a consensuses been reached as to whether or not Mannitol destroys good intestine bacteria while feeding bad bacteria? I think that's a big one. I certainly don't don't want to be the receiver of a "Stool transplant". :+( So I'd rather put up with my poor sense of smell (been doing it for years) rather than taking a chance on destroying my good bacteria and needing a "Stool transplant"..

This is the first time I've read that Mannitol destroys good intestine bacteria! Please give us more information on that, where you read it, etc. Thanks.

Richard2 profile image
Richard2 in reply to Despe

It also bothers my stomach

Like Despe, I've not come across this good/bad bacteria concern. I'm hoping that if mannitol is disrupting alpha-synuclein aggregates in the olfactory bulb to (fully or partially) restore some sense of smell, hopefully it will do the same thing in other parts of the nervous system. For what it's worth, I've had no apparent gut disruption.

Sorry, maybe I over-reacted. It's been a while ago. I do a search and find a LOT of posts talking about "Mannitol and bacteria", but I don't have time right now to read them all and see if they are the posts I remember. Here's one. (And maybe I misunderstood)

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