3 months ago, after 3 years of general malaise, I was diagnosed with PD. I had all the symptoms. I was devastated. My mum has PD and is in an almost vegetative state now at 83 years old. Accordingly I had seen where conventional therapy takes you and I did not want to go there. I tried the Levodopa but it made me feel worse. Shakier than ever! So I decided to do some research and work on it myself
I have introduced a few things things concurrently but the main points are these: gluten free diet
Injections of. Vit B12 twice weekly ( tests showed I was at 185)
High anti oxidant intake
Coconut oil 6-8 tablespoons per day
I was meant to see my diagnosing neurologist in Dec but that appointment got cancelled. I was pretty happy with that as I wanted time to experiment with what I had decided to undertake.

I finally went to see him this week and I think he was pretty surprised at my improvement when he ran me through the same suite of motor coordination type exercises. He asked me what had been going on so I told him about coconut oil and he said " there must be levels of levodopa in coconut oil" and then he googled it. He was evidently pretty surprised at whatever popped up on his screen .

He said I was clearly better than when he saw me 3 months ago and suggested I see a colleague of his who specializes in PD.
This is not a clinical trial. It is purely anecdotal. But it gives me hope that there is a solution to this cruel disease.

Just wanted to pass this on - I recently saw a Dr, and MD who practices alternative medicine. He suggested I try this oil in place of coconut oil. It's high in MCT's and is easier to take. Supposedly it's 18x stronger than coconut oil, so you don't have to take as much. I ordered it and it has arrived, I just started taking it, so not much to report yet, but we shall see!

http://www.upgradedself.com/products...ain-octane-oil

I am both surprised, and not, by your neuro not making a link to B12, especially as there are crossover symptoms that make it look similar.

I wonder whether your mother has been investigated for B12/folate deficiency and treated. Older people are very susceptible to this and often gets missed.

I was reading an account by an eminent haematologist of the cumbersome, accurate and now rarely used Schilling test as an example of a test that has been superceded by a poorer test protocol. He puts a rash of misdiagnosis with B12 down to pulling this one test, and describes the current situation as a 'dreadful mess'. It has effectively led doctors to believe that 'curing' the anaemia that show up in tests, is curing the condition. The patients then get investigated for other conditions.

PD treatments are not easy, as I am sure you will know. Good luck either way.

so you are this MD's guinea pig or has he/she seen improvement with other pd'ers?

good luck!

Thanks! I'm not his guinea pig - this is his standard protocol with PD'ers and he says he has seen improvements. No miracle cures of course, but people do feel better. He had been in practice for many years and is pretty well known and respected here in SF.

Along with the MCT oil, I am to begin slowly incorporating a ketogenic diet. He provided me with a very detailed, typed out diet plan. The plan states to eventually get down to 40 mg of carbs per day, include bone broths, grass fed meats, dark green veggies, grass fed butter, ghee etc. He said the key with both the diet and the oil is to go slowly. He's seen patients dive in too quickly and feel worse, easing into it seems to be best according to what he has seen.
He also suggested some other supplements, he did not sell me anything, he just provided the information. I am to try this for 6 weeks and report back.

I have been gluten free for years and had tried the ketogenic diet on my own, but never really stuck to it. For me, its been nice to have some guidance.

I finally took a closer look at my dna sequence that I had done by 23andme and found out that I have the C677T gene mutation which means I produce 40% less glutithione and less dopamine. From what I've read, this can be easily fixed by taking 5-MTHF (methylfolate) and the active/methyl form of B12. This is huge! Taking synthetic folate apparently merely builds up and doesn't get metabolized which also causes higher homocystene, results in less B12 obsorbtion and which apparently kills dopamine cells. Sure wish I knew this 3 years ago! I got a feeling this new dna data is going to be a big deal in PD and other treatments now and in the years to come! Be sure to consult with your doctor regarding 5-MTHF and methyl B12. Apparently taking too much is not good either.

Here's a website discussing this:

http://mthfr.net/mthfr-c677t-mutatio...ol/2012/02/24/

anagirl, Thanks for your post. I am interested in trying out your diet since I'm low carb/sugar already. Would you mind posting it. Thank you.

Zanpar, Where did you find the C677T gene info in 23and me? Guide me. I also carry this gene muation.

It's the SNP location rs1801133. The 1298 mutation also needs to be checked rs1801131.

See mine below

Gene

MTHFR C677T rs1801133 AG +/- (if you have two +'s then you metabolize at 30%)
MTHFR 1298 rs1801131 TT -/- (so I don't have this mutation).

You can get a free analysis of 23andme data at geneticgenie.org. Another great resource is

http://mthfr.net/

I hope this helps.

Here's a great graphical tutorial of the MTHFR677 and 1298 mutations

http://www.youtube.com/watch?v=tBUCe...FB6636&index=5