[lurkingforacure]

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.

[paula_w]

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

Originally Posted by lurkingforacure

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.

[reverett123]

I would not rule out a virus for one reason. The German researcher Braak laid out a pattern of spread marked by the Lewy bodies. The theory is that something is transported along the neuronal "railways". As to what it might be, no one knows. My own theory is that it is a bacterial toxin piggy backing on tiny particles of soot, but there is another possibility. The one thing known to travel those paths in a pattern eerily similar to Braak's findings is a virus - polio.

[paula_w]

So virus could be a subtype....rignt? so could parasites and illnesses of the colon...and on and on.
p

Originally Posted by reverett123

I would not rule out a virus for one reason. The German researcher Braak laid out a pattern of spread marked by the Lewy bodies. The theory is that something is transported along the neuronal "railways". As to what it might be, no one knows. My own theory is that it is a bacterial toxin piggy backing on tiny particles of soot, but there is another possibility. The one thing known to travel those paths in a pattern eerily similar to Braak's findings is a virus - polio.

[lindylanka]

On the old forum there was a discussion about a viral cause for PD. I remember being surprised that the virus discussed was likely the same as caused the viral pericarditis I had in my twenties. I think it was the coxsackie virus (?sp). I wonder if anyone else remembers this thread. Being a virus there was no treatment except bedrest and sedation - I have often wondered since if something like that stays in the body, similar to post-polio syndrome and other viral after effects.

This is definitely where patient input could be so useful, we know our histories, environments and progression, and we have a vested interest too....... I am on the side of multiple causes for pd, that the brain has the bbb because it is so very vulnerable to many insults......... I had a very interesting discussion recently with my PD nurse specialist who, unlike the neuros, sees people in their home environments dealing with everyday existence. She felt that consultants were more and more coming to believe that not only were there a multiplicity of causes, but in the future it will be seen to be a multiplicity of conditions, and the old definition of PD will change.

The changes in thinking seem to come oh so slowly though, with researchers haring off after the latest theory, and then changing direction over and again, with the medics coming up in the rear. I would like to see both groups really use their observational skills on people, we are the real white rats they should be looking at, the ones in the labs have artificially induced PD brains anyway.......... all this stuff is readily available but the definition is still in the 19th century....

Am I right in thinking that most subtypes only feature in very small group studies, where they are identified as anomalies, and that they are mostly ruled out of drug trials ? Paula, from what I have read about trials, and you would know a lot more about this than me, a lot of people don't fulfill the criteria, except that the two main groups, rigid and tremor dominant, for some reason don't get separated out.......

Sorry, I started on viral stuff, but paulas post interested me too........

Wishing you all peace love and happiness for the holidays and the year ahead, and many thanks to all for helping me stay afloat in good times and bad.

Lindy

[reverett123]

Researchers like Carvey at Rush in Chicago and Hong and Liu at the NIH have painted a pretty convincing picture of what sets the stage. A pregnant woman who experiences acute stress in the first weeks of pregnancy exposes the fetus to her natural steroids and his developing developing endocrine system is changed in a way that disrupts the body's control systems.

The same woman may expose the fetus to bacterial toxins as the result of infection and the developing immune system is hypersensitzed to further exposure. The ultimate outcome is damage in the substantia nigra from our own cells via inflammation.

The body normally deals with inflammation by way of the endocrine system's natural steroids. But chronic exposure can actually encourage inflammation. Ever see the Sorcerer's Apprentice?

Some critical system's become exhausted at an early age and our "bounce" factor is low. Life insults such as a virus or stressful job take a bigger toll. And the immune warriors continue their dance in our brains.

I see it as a two-fold problem in need of a two-fold solution. Repairing the SN may be possible, even imminent. But like the temporary respite of DBS, that doesn't address the other, which is the underlyng process. Oddly enough, however, I think that once we see that the repair can be real, that we as individuals can do a lot on the other. No more heroics. Let them keep the high stress job. Tell Junior or Mama that they've got to deal with their own problems because I'm going fishing.

[lurkingforacure]

We were not part of braintalk so missed out on prior posts there about viruses and PD. But we are intrigued by it, mainly because a possible connection between PD and a viral cause seems to resemble AIDS so closely...my understanding of AIDS is (generally, I have only extremely limited knowledge of this and don't mean to sound off about something I really dont' know much about)...you get infected without knowing it (or caring, in some cases), and the virus lays in wait, for years, sometimes even a decade or more. Why? What is going on during that time? What is that viral bug doing all that time between infection and manifestation of clinical symptoms? Is damage taking place, but undetected because there are no physical symptoms? It is fascinating.

And this is precisely our question: how would one even go about trying to find out if there were any foreign "intruders" in his or her body? They can test for a specific known virus, but what about an unknown virus, maybe one that has mutated into a different and wholly unrecognizable form? How would you find that out, what specialist do you see and what test do you ask for? Somehow I doubt we could just waltz into an immunologist's office and say "Run whatever test there is to see what critters might be inside me". Or not? That's what I was trying to find out.

[Ronhutton]

I have often wondered about the herpes virus and PD. This is the one that shows up in cold sores on the lips. I have suffered from cold sores from around 20 years ago, and I am in my 18th year with PD. I put zovirex ointment on the sores and it gets rid of them for a few weeks, but it has not erradicated the virus and back they come. Then of course there was the ensephylitus outbreak many years ago, leaving a flood of PDers in its wake.
How many others have the cold sore problem?
Ron

[lurkingforacure]

Originally Posted by Ronhutton

I have often wondered about the herpes virus and PD. This is the one that shows up in cold sores on the lips. I have suffered from cold sores from around 20 years ago, and I am in my 18th year with PD. I put zovirex ointment on the sores and it gets rid of them for a few weeks, but it has not erradicated the virus and back they come. Then of course there was the ensephylitus outbreak many years ago, leaving a flood of PDers in its wake.
How many others have the cold sore problem?
Ron

Yes, and what triggers that cold sore? A ton of people have this and they will get a sore, then it will go away, maybe they are good for years, and then boom, there's another outbreak. What is that virus doing all that time in the body? Is is just lying around, choosing not to be active, or is the body working on suppressing it the whole time until something happens and the body is overwhelmed and cannot fight it anymore and then you see the fever blister? Anybody know?

And that's another point: so many people have viruses lurking in their body, and it is not until there is an erruption (AIDS, fever blister, etc.) and the body manifests with physical symptoms that you even know there is this alien in the body. Without any manifestation of physical symptoms, how would one find out their body had been invaded?

And I guess I am really asking these questions because if PD were like herpes, and we could control the virus...well, then we could control PD. Or maybe this is way too simplistic.

[reverett123]

Generally speaking, a virus would remain dormant until its environment changed. In this case it would normally be a stressor that triggered it. Shingles is another example.

Originally Posted by lurkingforacure

Yes, and what triggers that cold sore? A ton of people have this and they will get a sore, then it will go away, maybe they are good for years, and then boom, there's another outbreak. What is that virus doing all that time in the body? Is is just lying around, choosing not to be active, or is the body working on suppressing it the whole time until something happens and the body is overwhelmed and cannot fight it anymore and then you see the fever blister? Anybody know?

And that's another point: so many people have viruses lurking in their body, and it is not until there is an erruption (AIDS, fever blister, etc.) and the body manifests with physical symptoms that you even know there is this alien in the body. Without any manifestation of physical symptoms, how would one find out their body had been invaded?

And I guess I am really asking these questions because if PD were like herpes, and we could control the virus...well, then we could control PD. Or maybe this is way too simplistic.