treatments

[pwpboy]

I apologise for making my third thread today, but I have a question. As there are many PD patients here online, I can imagine some of you have experimented with lots of stuf scientists claimed could have neuroprotective effects. For those, I would be thannkful towards them if they could answer me following questions:

Did you try green and black tea and do you feel like it improved any of your symptoms or even reduced PD progression ?

Did anyone try cat's claw and did you have the feeling that you could sleep better and managed symptoms better ? I read about a study on 135 patients in which cat's claw stablized the symptoms. But I also discovered a report in which was claimed 1 patient got worsened motor symptoms that removed after stopping cat's claw consumption.

Is there anything else you tried and helped you a lot ?

[monitor1]

I was Dx with PD in 2008. I have participated on Patients like me web site. Your question though basic is important. So many claims, counter claims and embellishments run rampant in the Net. Critical thinking be damned LOL

For me and others, it is like a 4 legged stool of proper meds, exercise, diet, and positive attitude. How you fill those 4 buckets is up to you and what you need and can accomplish.

As to your immediate question I take Stalevo for med and exercise frequently but I do take some over the counter items. For example Green Tea with Korean Ginseng past diluted in the hot tea. I take L Tryptophan, AND B complex. I also take Super Green and Wheatgrass

Could I isolate one over the other as to the greatest benefit. No. Can I say when I stray from this combination after years of trial and error I dont feel as well, Yes.

There are other things I do to relieve stress, improve muscle flexibility, yes yes yes . Are my techniques for everyone, likely not

good luck

[Nan Cyclist]

Cycling with the Pedaling for Parkinson's protocols. My doctor recently told me that I should be at level 2 after 3 years, but now at 5 years from diagnosis, but I'm holding steady at level 1.

[soccertese]

tea has no affect on me. in fact, i stopped taking some green tea supplements since they seemed to interfere with my sinemet, might be the amino acids in the tea.

i'm doing pretty well after 11 years from my diagnosis, might be due to vigorous exercise which i stopped 4-5 years ago but have started up again. i played soccer for 5 years after i was diagnosed and quit after i started getting too many charlie horses, i also jogged a lot. i had to choose between taking more meds and playing sports/running and decided i couldn't risk a serious injury if my meds wore off. at that time didn't consider that level of exercise as possibly neuroprotective so didn't try to keep up that level of exercise doing something else.

kind of rambling, sorry.

but bottom line, no matter what you do it ultimately has a biochemical basis.
keep in mind there have been many studies on neuroprotection, there was a major study on vitamin C and E, of course there was COQ10, studies on many drugs including agonists, mao-b inhibitors like selegiline and recently azilect, hundreds of studies on mouse/rat models of pd, and nothing really works, they're still testing COQ10 at 2400mg doseages and still debating azilect. i remember reading an article by a canadian researcher that ginger was neuroprotective in rats, he couldn't wait to start a clinical trial and zippo. of course there's glutathione which was supposed to work and a study showed it didn't. not to say there isn't something that works but i've tried everything, chelation, I.V. glutathione, b-12 injections, low dose naltrexone, dozens of supplements, probably the only supplement that helped for a little bit was american ginseng, gave me a little more energy but had to stop because of high blood pressure. wasted a lot of money.

do a search on this web site on dextromethorphan, some posters say it might have slowed their progression. i hope i got the name right.

[Arsippe]

Originally Posted by Nan Cyclist

Cycling with the Pedaling for Parkinson's protocols. My doctor recently told me that I should be at level 2 after 3 years, but now at 5 years from diagnosis, but I'm holding steady at level 1.

Nan, do you have a link to the exact program u are on and any details you could share.

[reverett123]

I have made a few attempts and posted here. Search for "white rat". But I haven't done as much as I wish I had. Several problems. In the early years you don't believe it is real and by the time it dawns on you that it is energy becomes a factor. Then there is a problem with neuroprotection being a longterm affair. How do you know if something is working?

I have switched to neurofunction for my own emphasis and Am finding that things such as creatine and carnitine help a lot at least so far.

[Arsippe]

Originally Posted by reverett123

I have made a few attempts and posted here. Search for "white rat". But I haven't done as much as I wish I had. Several problems. In the early years you don't believe it is real and by the time it dawns on you that it is energy becomes a factor. Then there is a problem with neuroprotection being a longterm affair. How do you know if something is working?

I have switched to neurofunction for my own emphasis and Am finding that things such as creatine and carnitine help a lot at least so far.

Rev, creatine is helping my legs from feeling weak and weird. That improvement is a little validated by the fact I am on no meds, PD or otherwise. Next step will be carnitime......what form of this do u take?

[reverett123]

Originally Posted by Arsippe

Rev, creatine is helping my legs from feeling weak and weird. That improvement is a little validated by the fact I am on no meds, PD or otherwise. Next step will be carnitime......what form of this do u take?

Acetyl-L-Carnitine seems to be the best based on what I have read, but not by a wide margin. This is still a new direction of approach for me. Like you, the change in my legs is remarkable. Also, my stomache's gastroparesis seems greatly improved as it gurgles happily to itself. I also find an undeniable response to Vit B-complex. Enough so that the word "chronic" comes to mind. A lot of new info to sort through here, but I can walk again! - Rick

[mark f]

Originally Posted by reverett123

Acetyl-L-Carnitine seems to be the best based on what I have read, but not by a wide margin. This is still a new direction of approach for me. Like you, the change in my legs is remarkable. Also, my stomache's gastroparesis seems greatly improved as it gurgles happily to itself. I also find an undeniable response to Vit B-complex. Enough so that the word "chronic" comes to mind. A lot of new info to sort through here, but I can walk again! - Rick

Recently tried Minocycline !00 mg twice daily . My symtoms improved quite alot but after 10 days i became too dizzy to continue. I may try again at a lower dosage. Dizziness is a common side effect of this antibiotic. As i reported on this site before, i had remarkable improvement on 500mg of Amoxicillin twice daily, and no dizziness. Unfortunately, unlike Minocycline which is a common acne medication which is prescribed for daily usage for years at a time, it would be hard to find a doctor to script Amoxicillin for daily use.(Even though my dermatologist claims it's not a powerful antibiotic). Somewhere down the road i'd like to try a daily dose of it, fortified by probiotics.

[pwpboy]

Originally Posted by Nan Cyclist

Cycling with the Pedaling for Parkinson's protocols. My doctor recently told me that I should be at level 2 after 3 years, but now at 5 years from diagnosis, but I'm holding steady at level 1.

Nan, could you give more info on the cycling exercise you do ? The lenght of your workout, the intensity ?