Member
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Join Date: Mar 2015
Posts: 116
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Member
Join Date: Mar 2015
Posts: 116
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No Bluesfan, I did not go for any diagnosis regarding PD or malabsorption though I did, in the beginning (before I started this protocol) treat for candida overgrowth and do believe that I had it. I went thru a lot of changes that are consistent with that.
In hindsight I wish I had gone for testing of my vitamin B levels given that this treatment, which I am responding to is all about B vitamins. OTOH, after reading a lot of studies and articles about this and other PD treatment methods I'm not sure that it would have done more than confuse the issue. The b levels this method addresses the B2 levels in your liver. So, first you have convince someone that your liver does actually store and use B2, and second, press for testing it. That alone gets you off the reservation and labeled as a nut.
I've been there before, going to a doc and asking for a particular test, only to be told that what I am asking for is not on the "protocol" for my concern/problem/disorder. So instead you are pigeonholed into a diagnosis and that diagnosis has nothing to do with the way you want treated, etc. It's largely like if a drug company doesn't market a drug for it doctors don't know what to do with you. I know that sounds bad, like I don't trust doctors, but i do. There is just no way a doc .. even a specialist .. can know all these things. I do not expect them to, either. They are gonna label you with a particular disease and then prescribe the protocol for your disease and send you home.
A recent case in point .. I went to my GP about my legs .. I was having RLS symptoms that were now dramatically affecting my sleep and driving me a bit crazy. As I do with everything, I studied it and was aware of the protocol as well as being aware that at John's Hopkins they do a totally different treatment that offers a 60% chance of complete cure. I wanted some blood tests related to the John's Hopkins method. My doc actually read the Johns Hopkins method and seemed interested in it but immediately said that he would not be able to get approval for it via the insurance company .. and I have pretty good health insurance too.
He explained that an IV treatment of iron costs a lot. He said that he could order the blood tests but I already knew that wouldn't make a difference because the iron was not about serum levels which is all they would measure. I took the standard protocol (pramipexole) and treated with that. To put it in perspective, a lifetime of prami vs 1 or 2 treatments of IV iron. Which costs more in the long run? That is the way heath care works in the states .. anything unconventional just doesn't fit the cookie cutter protocol, even they don't know what causes it and don't have a "cure" but rather just a coping mechanism.
I have thought, and dearly would love to interact with a specialist/researcher that had an interest in doing something to try for a cure. Given though, that I cannot find that yet (there is a specialist from South America at a major PD center near my home I've considered) going my own direction for the short term seems the best thing to do. I may elect to seek out that specialist when it becomes evident that I need to do more than I can manage or nothing works.
The fact that I'm having positive responses to what I'm doing here indicates to me that I'm either responding to placebo or that this treatment holds promise for my condition. Given the change in physical symptoms I doubt it's placebo. There definitely seems to be something profound about B vitamins and PD. It's not an instantaneous fix but then the disease also took probably decades to get to this point. It's highly unlikely that you find a 5 minute cure. I'll be quite pleased if I continue to improve at any rate of time. The study was only 6 months long itself, and it showed slow continual improvement so I'll be very patient.
Sorry that the reply had to be so long but I want you to know where I'm coming from. In light of all this though it does makes you wonder how innovation will happen in health care. I'm glad I'm not a doctor. It's gotta be very frustrating.
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