Hi Breezyracer,
I'm about to go away so excuse me for not replying to your posts for the next week but there's a relatively simple way your neurologist can perhaps diagnose PD.
The Sinemet challenge test.
You're given a small amount either in his consulting rooms, in hospital or at home.
If your symptoms improve markedly as particularly in your circumstances you've been unsure for some yrs now I would then try to accept that as the closest for the time being as a diagnosis of PD.
Best wishes.

It's a good time for a little progress report. I've been on the B2 caps and B1 allithiamine for almost 2 weeks now. So, has anything changed?

Well my typing is almost back to my old normal. What has been throwing off my typing is a lack of timing between the fingers on my left vs right hand. That has decidedly continued to improve to the point where my speed is back. Maybe every couple of sentences I'll flub up but there is no doubt there is substantial improvement.

It's nice to have my sense of smell back to some degree and it may be improving as I go along. It seems like it's especially keen in the morning. It does make me realize though, that my taste is poor. I love Indian food, the spicier the better, and recently we out with a couple for nice meal. I added so much red pepper spice to my meal that even I couldn't believe it. Our waiter was a bit taken back by it too. Still, the flavor just wasn't there. I'm hopeful that my taste will improve but it's kind of funny .. without smell I didn't realize that my taste was faint.

Pain seems to be a good indicator for how much B2 I should take during the day. In general the more B2, the more pain and feeling I have. Most days I take 2 b2s, but when I'm planning on an active day I may only take 1 in an effort to minimize pains later. 3 B2 tabs (I'm still taking the 100 mg ones) make me hurt in my shoulders, neck, and knees. Hey, at least there's feeling there now so I'm not complaining.

My walking is fine. I can honestly say that I haven't had a single out of balance veering around while walking since I started on the allithiamine.

BTW, I did experiment with a large dose (500 mg) of conventional thiamine. I read that large doses of thiamine calm anxiety and I reasoned that less anxiety would produce less tremor. I find that my tremors seem to amplify with anxiety. I didn't feel a thing from it though. I may revisit this idea .. I think it might have some promise. From what I read you can do 3x500 a day for anxiety and it works. And it's side effect free too.

My eye focusing has improved but still has room for improvement. If I take my prami for restless legs then the next morning my focusing abilities are improved, and pretty good. That tells me that there is room for improvement and hopefully (eyes crossed) I'll have good mornings even without having taken the prami the day before. I'm kind of using this as a gauge for how I'm managing.

Speaking of prami, I am on a small dose for RLS .. .37mg a day. I hold back on my prami though and only take it when I need it, as in restless legs driving me or my wife crazy. I have definitely found that I'm using far less prami. This last week I had 2/3rds of my doses left in my pill case. I'm sure if I took all my prami I would feel better but I wouldn't be able to judge the changes so well.

So there you have it. I'm continuing with this B2 and allithiamine thing. It's working for me. Until something changes this is part of my daily routine.

I'm working on some new things to expand into but if they pan out I'll be starting up another thread for those.

Best of luck to everyone.

While I've been following the treatment methods in the study on Brazilian study on B2 I've run into a little more info on hemin, the ingredient in red meat and pork that should be avoided, according to the Brazilian study.

I have indeed been staying away from red meat and pork and I didn't know how much difference that makes but I think I got a little taste of the difference quite by accident the other day.

The weather has turned nice and my wife wanted an impromptu cook out. In my effort to stay way from red meat I bought some turkey hot dogs. They tasted pretty good too. However the next morning I was shaking like a leaf on a tree. Why? Well this is speculative at this point but it turns out that hemin used to color meats. They even color red meats with it. I bet it was in my turkey hot dogs, and I bet there was a lot of it.

So I guess the lesson is to be careful with processed meats, especially if they are faked up to imitate beef.

BTW, hemin is toxic in digestion but the body normally converts it via B2 in the liver. If your liver is deficient of B2 hemin goes to the brain, cleanly passing the blood brain barrier. I think that's how I got the shakes that next morning. I usually never have shakes in the morning and I had them bad. I think that there is definitely something to this.

Here is a study that piggybacks on the Brazil study which attempts to create the symptoms of PD in lab animals. There is a lot of good info here for someone with a scientific bent and seems to tighten up the connection of B2 deficiency and PD. According to the hypothesis of this study, B2 deficiency could be at the heart of PD. The study wasn't able to prove it though because there are not any PD lab animals. All they were able to do was to take lab animals and make them B2 deficient via diet. Likely the PD B2 deficiency is caused via genetics or lack of B2 absorption in the intestines.

http://ctnr.newcenturyhealthpublishe...v5p149_156.pdf

Here's also an interesting little link from a blog associated with the Parkinson's Foundation ..
http://forum.parkinson.org/index.php...ed-meat-study/

Another week or so and time for another progress report. For the last 10 days or so I have been taking the B2 more like in the study, which is to say that I'm getting 3 30 mg doses a day vs the 2 100 mg doses like I was doing before.

I do feel more "stable" that way. I'm progressing along well for the most part. Sometimes now I can feel a treble but cannot see it My trembles are predominately in my left hand. I guess that's some progress in that sometimes when I feel treble it is not outwardly discernible. Mostly I'm feeling more normal most of the time.

I'm still taking some prami in the AM to get my focusing better in the morning. In general though I'm trying not to take anything to directly treat PD.

I guess I should also mention that I'm taking a raft of supplements in addition to the B2 and B1 allithiamine. I have always been big on supplements though ..

Hi BreezyRacer
Thanks for the interesting posts - especially the links to research. I understand your desire to manage your health yourself. I've had, (and still having), difficulties with the medical 'profession' in getting adequate diagnosis and treatment, (but that's another story - too long for here).

My question is did you ever get any initial testing done for vitamin deficiency and or malabsorption problems: eg Plasma Homocysteine?
Thanks

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.

Hi again BreezyRacer
I appreciate the long report - I had read some of your earlier postings but so much stuff on these forums that my fuzzy brain sometimes can't remember what I've read where. I don't have PD - I have auto-immune Addison's Disease (5yrs since diagnosis), plus whatever else is causing my current general deterioration.

I'm investigating the Vit B (and possibly other essential nutrients) and malabsorption connection. That's why the Brazil study interested me. I'm still in early research and like you trying to find out as much as I can before following up with doctors - something they don't seem to appreciate. Following a very dismissive endocrinology appt. yesterday it's time for Plan B (or by now C, D or E!). You mentioned being labeled with a particular disease - I have the label - it only took them 10+ years to figure it out - the problem now is that any other problems get attributed to that label and they won't look any further.

I'm not as well read as you are on the medical research and with abysmal short-term memory struggle to take a lot of it in. It seems to me that a general deterioration with a wide variety of symptoms (physical - neurological) would suggest some form of system wide metabolic (is that the right word?) disorder. Agree?

Yes being labeled as a nut is something I have to be careful to avoid. The Mental Health service in my country is even less resourced than the general health service. Forget getting any adequate treatment. People joke about the easiest way to get Mental Health treatment here is to 'get yourself a P habit (Ice in the US) and go off your rocker' - then you'll get seen to!

Sorry this is about all I can manage for now - would love to rabbit on about innovation and changes to medical systems but then you'd really think I was nuts. thanks for the input - will keep following.

Time for yet another progress report ..

On Monday 4/27, I added a methylated folate to the b vitamins I take, based on this posting by BlackFeather ..
http://neurotalk.psychcentral.com/thread219224.html

It has only been 4 days but I could tell my tremors are decreasing from it. I'm not sure I felt much more than reduced tremor except to say that I felt "smoother". This morning I tested for tremor (just holding my hands out looking for tremor) and I couldn't believe it .. zero tremor at first. I have had this little tremor thing for like a decade or more and it's getting under control!

So, a lot more progress!

Just an FYI, my B vitamin protocol from all these studies is ..
100 mg of vitamin B2 a day, taken in 3 parts during the day
50 mg of allithiamine a day, taken in the AM
3 mg of methylized folate (B9) a day, taken in 3 parts during the day
NO RED MEATS OR PORK (I still do fish and chicken)

In addition to the above I have been taking (I started way before this B vitamin thing .. most of them I have been taking for years) 2 grams of cinnamon, 4800 mg of Omega 3, a special form of CoQ10 with PQQ for mitochondrial health, and 4 grams of vitamin C with quercitan (another very strong anti oxidant from onions), and 5,000 mg of vitamin D3. These did not impact my PD symptoms and in fact were not taken for PD symptoms.

So if you haven't already, I urge you to give these B vitamins a chance.

BTW, while I've been on these b vitamins I also tried a high quality B complex vitamin for a few days. For reasons I cannot fully explain it made me feel pretty crappy. Perhaps too much B12 or niacin or something else? I don't know, but I know I'm not going to do that again. So perhaps more of everything is not better.

Next step is to increase the folate (B9) to 5 mg a day ..

Best of luck to everyone!

Hi BreezyRacer
Thanks for the update. Glad to hear you are making progress. Agree with you about the B multi's (or any multi's). It's hard to get the right mix in the quantities you need - or one ingredient may be in a form that you know is not absorbable.

Just a word of caution re you adding the methylfolate - although you're probably already aware of it - Folate works in tandem with cobalamin (B12) too much folate can cause B12 deficiency. Also there's this thing called the 'Folate Trap' to do with remethylization of folate masking B12 deficiency (If I understand it correctly) - we're getting into complicated territory here - hematologist level.

Sorry I'm too exhausted today to do further research on this stuff and I know you like to do your own anyway. Keep us posted on how you get on.

Thanks Bluesfan. I was aware of the B12/folate thing but have never heard of folate being re-methylated and presumably recycled in the system. I will watch out for that kind of thing. I have some B12 in case but so far no problems.

I guess if you're somewhat deficient (at least in the brain) it may take a little time for these things to come forward.

B vitamins are quite complicated. The interplay, the conversion, FAD, the co-factors .. I think I study it for a week and still not quite fully understand it all.