It's early days in fighting back on my PD symptoms and during this short time I have tried various forms of targeted B vitamins for PD. When I try supplements I put a lot of importance on first impressions.

It seems that in general B2 as riboflavin-5'-phospate, and then B1 are most important. I started with B2 first, using 100mg of B2 twice a day. Upon first use, the next morning I was able to smell again. I did not know in any what to expect, if anything, so it was a real surprise that I awoke being able to smell. Frankly I didn't know that I couldn't smell before this. I can also feel my feet better too. I have had problems with my feet, especially the right one, as far as feeling goes. I had plantar fascitis in that foot for an extended time, and after some physical therapy that problem was licked but my feeling in that foot, along with blood flow was/is compromised with varicose veins. I've been on B-2 for about 5 days now and these gains continue to solidify. I plan on continuing high dose B2 for the duration. It definitely makes a difference. Ideally I would like to move on to a smaller (30mg) dose, every 5 or 6 hours, like the study. So far I haven't found that size. Here's a link to a study that had great success with it ..
http://www.scielo.br/scielo.php?scri...rm=iso&tlng=en

As for B1, I did some days taking benifotiamine to no avail. There were no discernible changes I could feel. I guess reports are that benfotiamine does not cross the blood brain barrier (BBB). How much difference does that make. Well I wasn't sure it would make much difference. All the cells in your body .. nerves especially need B1, so I was unsure if it made a difference.

Yesterday though I go my first delivery of allithiamine, a version of thiamine (B1) from garlic, that easily crosses the BBB. Last night I noticed that could walk in a straight line. You have no idea what it's like to realize that there is a difference in my balance and direction all the sudden, by just walking to the back door and then up the steps. There is definitely something to using a B1 that crosses the BBB. ** Also I just returned from the mall and my walking and balance are definitely much better .. normal in fact!** My typing is better too, though I still have high reliance on spell check, of course. One dose is not gonna fix that. My typing started to deteriorate over the last year or so and it's been quite frustrating, given that I spend ALL DAY working on computers. I do programming and must write about 20-30 emails a day. I also noticed improved eye focusing ability as well.

As for tremor, if anything it has gotten a little worse, but according to the study on B2 and cutting out red meats (including pork) that will likely come in time. **Right now 12.5mg of prami taken under my tongue helps the tremor a lot.** The link for the study is above.

BTW, trying to get these vitamins in a B complex formula is a waste of time for a few reasons .. first is the dose .. complex B vitamins have these in small does and are usually types that don't absorb well. Second is that if you take a lot of B vitamins all at once the B2 gets depleted right away. B2 is used to transfer the other types of B vitamins into their useable form. They call it a "co-factor" for the other B vitamins. I would say that you should take only a few key B vitamins at a time because of this.

As I'm feeling these changes I'm realizing more and more just how long I've been showing these little symptoms that are markers for PD. I know now more clearly the fight ahead and right now, while it's early, I'm gonna do everything I can to push back. I hope that some of these initial impressions will give others some encouragement to try some of these B vitamins. Best of luck to everyone ..

Thank you BreezyRacer for the info and interesting analysis. What brands of allithiamine and riboflavin-5'-phospate do you use?

Lana
I'm not too sure that the brand matters but here's what I'm using ..

B-2 Tabs from TwinLab, 100 mg tabs twice a day .. I would prefer a smaller dose that I could repeat more often to mimic the study I referenced above. I may go 3 times a day to see if it makes a difference. Make sure that it's riboflavin-'5-phosphate though.

Ecological Formulas Allithiamine, 50 mg .. I'm taking this just once a day at this point and probably will continue to do so. Swallow them fast, they are very garlicy.

Thank you BreezyRacer.
THORNE RESEARCH - Riboflavin 5' Phosphate - 36.5 mg per capsule, available on amazon.

A little progress report ..

Things continue to go well .. very well. I think my tremors are reducing, at least in intensity. While I still have tremor in my hands (the only place I've had it) it's very mild and it doesn't seem so out of control, if that makes sense. Then again I haven't had to deal with a highly stressful situation during this period, and that's when my tremors go out of control.

A little possible note of caution in regards to the dosing on B2. I currently have 100 mg tabs of it and I decided to try 3 of them in a day. There was a marked difference, in that I got pain my some of my joints. I awoke to my shoulders killing me, for instance, along with some tennis elbow too. These pains are from old injuries that happened over the last decade or so.

So I have couple of takeaways from this singular day experience .. it seems that B2 acts as a nervous system amplifier for me. At 200 mg a day I feel great, with only an occasional light knee pain going up steps, etc. Entirely normal pains for a 60 year old, IMO. 300 mg however really wakes up old pains for me. Again this is only from one day at 300 mg so we have to take these results with a grain of salt. In me that works out to about 1 mg per pound, though, of course I'm not sure that dose per pound is relevant.

I'm not sure that the idea of keeping B2 circulating is blood is that important either. I do not feel any difference in the way it works when comparing the first hour of taking of it vs 8 hrs later. From what I understand your liver stores some B2 so it probably evens out in the system by doing such. One of these days I am going to try to skip a day and see what happens.

My days are so much better and thanks to the allithiamine (60 mg a day) I can walk as fast as ever, and with normal balance and confidence. I am so pleased about that.

PD seems pretty far away for me right now. I can only hope others get the same results.

just curious, have you been diagnosed with pd by a neurologist or are you just self diagnosing?

I am "just" self diagnosing. I cannot find a good reason to go get a label put upon me at a time when it will do me no good. I know from your previous responses to my posts that you think I am a "faker" .. or whatever.

The fact is that a diagnosis of PD is highly subjective, given that PD seems to be a wide range of symptoms. Just for the record, I do not relish having PD in the least. There aren't any single neurological diagnosis' that fit exactly, and thus it seems you are pushed into a diagnosis of PD.

I have restless legs (diagnosed), more than decade long tremor (much worse when under stress), more than decade long urinary incontinence (even though my prostate is quite small according to the doc), lost my ability to smell, difficulty focusing my eyes, declining balance, ED, and some recent years of depression. I stuttered as a child as well.

I have NOT had nightmares, dementia, shuffling gait, nor constipation. Though I've had a mild tremor for over a decade it could be incidental, or at least I thought so till I found my left hand shaking uncontrollably about 1-2" while in my lap a week or so while under stress. I think I'm early in the process and as I stated above I'm gonna do everything I can to address it early.

It's entirely possible that I have a B vitamin absorption dysfunction, especially given the way I've reacted to B2 and B1 in high doses. Great if that's the case though as per the study referenced in post 1, ALL of the PD patients in that study were found to be B deficient. So is that a flag for PD? Who knows? Neuros don't even test for that stuff. I'm focusing on dealing with my symptoms and hope that doing so will keep me far away from canes, walkers, wheelchairs, and rest homes.

What was your first clues about your PD? I'm assuming that you have a diagnosis ..

i was diagnosed by happenstance, i didn't nor did anyone i knew have any suspicion that i had pd. i saw a friend who was an orthopedic surgeon about a problem i had with my right hand, i noticed i couldn't move my fingers as fast when cleaning my hard contact lenses. he sent me to a MDS who diagnosed pd. what i did with that diagnosis was up to me, nobody forced me to take meds, etc. in hindsight i had symptoms pointing to pd, frozen shoulder and not swinging my right arm when running. i was playing on a men's soccer team then and holding my own but occasionally lost my balance which was so unexpected other players would laugh cuz it looked so odd.
the MDS noticed some other slight pd symptoms such as stiffness in my right shoulder/arm and dragging my right foot a little, he pointed out my the sole on my right shoe was more worn than my left shoe. i also received an MRI to rule out other possible medical conditions.
I made that comment because I think it's important readers know you may not have pd. It's that simple. I appreciate your honesty, it would be simple for you to just say you have been diagnosed. With a diagnosis you could qualify for clinical trials, there might be some personal benefit to you and to others. There are biomarker trials where they just measure your progress and compare to biomarkers. And you never know, there might be some super duper potential cure phase 1 trial that you might want to get into that filled up before you could get that "official" diagnosis.

Also, believe it or not, some people get substantial relief from pd drugs. Imagine that.

Thanks for the reply, soccertese. Are you still able to play at all?

As for meds, I already have access to pramipexole for RLS, and since I started this B vitamin routine I've only been doing 12.5 mg a day (in the morning and under my tongue .. it seems to work better that way) vs the 37.5 mg that I am prescribed. It helps me to focus my eyes a bit. I had not mentioned that above because I don't want people to read to much into these results and interfering with their meds, but it's true for me.

I will get a diagnosis when/if I am faced with having to. I would not dare be first in line in any US drug trials though. Over the many years of dealing with medical issues, not just for myself but family members too, I increasingly find it hard to believe that creating "unnatural" compounds of man made design rarely actually fixes the problem at it's source. Mostly it covers up symptoms or trades one set of symptoms for another.

The whole drug patent process usually has US researchers looking in all the wrong places and looking for patentable compounds rather than the source of the problem. There are, of course, exceptions but it seems that even vitamins are not well understood yet. I find that frustrating .. researchers get paid to come up with patentable solutions rather than doing true research of understanding the human body. End of rant ..

I understand that you're a bit snippy with me, but I would strongly urge you to spent he $20-$30 to try these two things out if you haven't already. They will not hurt you and may help you for little cost. Most important, if they do help they will provide benefits that you cannot get elsewhere. Please try them. I strongly suspect that your balance could improve. I'm wishing you the best.

you really haven't done much research on pd, there's been as much research if not more on natural products than synthetic and what to you think l-dopa is? it's a naturally occurring amino acid. i guess you haven't read about the success of fetal cell transplants which had long lasting disease reversing affects in a few pd patients? GDNF and other natural growth factors have been tested and are currently being tested.
COQ10, CREATINE, VITAMIN C, VITAMIN E have been tested. exercise has been tested, there are stem cell trials.

with the slow pace of clinical trials and the amazing advances in understanding this disease, i wouldn't totally write off a phase 1 trial of any kind, and like i said, some are just information collecting, no drugs involved whose info will potentially benefit you and others if you have pd.

best of luck. i tried b1 and benfotiamine, no benefit.
i can't play soccer anymore after being diagnosed 12 years ago. but i'm 61 and wouldn't be playing, too much wear and tear. i stopped playing in 2005.

pd is quite a different disease from RLS, but what happens when you see your neuro again, are you going to discuss pd?