Thread: virus and PD?
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Old 12-23-2008, 05:20 PM
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
Default 5 p.m. ramble warning

I hit thanks accidently but meant to hit reply. This is precisely what Rick wanted to work on in the neurotalk group - encourage communication among different specialists either by making entries into a wiki or listserve or something.

There is a high percentage of pd in teachers, who are around every germ on the planet, and a virus as possible cause is not a new idea. They are presenting these ideas, but how much are they actually doing with them?

We hear about subtypes. And again, wonder how much they are specifically working on this. Are we waiting for DNA testing to become cheaper and combine that with our EHR to go online? See you in the next life......

I have known that some wonder about a virus since I first came online. lfac, I am not directing this comment to your post or to you in any way. I'm still agitating and probably always will be loud about letting patient consumers be included, which adds honesty, urgency, and the models they need on the trip through the pipeline.

I dislike repetition, could never have settled for a career where you must do the same thing everyday. But this need for patient consumers concept is so overdue, that I'm not stopping till it happens. I'm committed....why do they even do clinical trials with the subtypes together that they already know about? There is tremor dominant and rigid, bradykinesia dominant.....why would they be expected to respond the same to treatment?

Why would we test a 71 year old man who is rigid/bradykinesia dominant with a 42 year old woman with tremor dominant symptoms and expect them to respond in the same way?

Does anyone know of trials where they separate even these two subtypes when designing the trial or analyzing the results? There have to be some, but they seem to be mixed in most.

Then the results, which Madelyn reminded us to day, are biased, the two phases use different language in their phase results, explanations that deliberately confuse the layman. You can't believe the articles. Jaye, could you please post what tips the good researchers off to the article as being "tabloid" research [my own term]. Was it "supplement"? Would you explain when you have time?

Am I incorrect, jumping to the wrong conclusions?....Just shooting my mouth off? ...How would I know that? Talking to us wastes their time is one view.

Darn ..... it's the holidays. Am I ruining some rich peoples' holidays? I doubt that anyone is paying attention. I must need to get a life.....well it's getting too late. So here I am, making noise to the end.

However, I do wish all of you faithful friends, posters, readers, caregivers, advocates, moderators, administrators, a very Happy Hanukkah, a very Merry Christmas, and Happy Holidays to all.

We will need a thread about New Year' s Resolutions soon.

Sorry LFAC, all you did was post a few simple questions about getting a virus test. But it's 5 p.m. - my crazy sinemet paranoid schizo ramble hour, to which i have now had to add no solid foods to the metabolic mix, a no chew diet until I get a bridge and other dental work in January.

Down a pound to 115 today. I'm not going to stop making noise....many are older and have it much worse. They need someone to make noise for them.

sorry, but not sorry - i think you know what i mean.

paula


Quote:
Originally Posted by lurkingforacure View Post
A friend recently told us that someone he knew was diagnosed with a significant heart problem...he wisely went to get a second opinion and the savvy doctor ran some tests and discovered the guy actually had a virus that was making it look like his heart had a problem. Took care of the virus and end of problem.

We can't help but wonder if a virus might be at play in the whole PD scenario, and so...

If someone wanted to get tested to be sure they didn't have any virus lurking around in their body, what tests do they get? Who do they go to-a virologist or an immunologist? Maybe a lurking virus causes PD outright or sets the wheels in motion, or maybe it only makes symptoms worse, meds not work as well, etc. But we are thinking of going to someone to be sure a virus is not at play anywhere.

Any experience or advice on this anyone may have would be very much appreciated, thanks.
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paula

"Time is not neutral for those who have pd or for those who will get it."

Last edited by paula_w; 12-23-2008 at 05:48 PM.
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