Like the movie "Lorenzo's Oil"
 

I'm new here and was glad to see a stimulating discussion underway. I agree with Bearygood's thoughts that we can all come from different places and have a lot in common to learn from each other about.

The discussion above reminded me of the two varying views among the parents' group in the movie "Lorenzo's Oil" with Susan Sarandon and Nick Nolte which was based on a true story of the main characters' son's illness. It really amazed me to see how the chronicle of their struggles reflected my own family's stuggle with my own, different, illness.

It is a heartwrenching story, but in the end a cure was found by some of the parents and they overcame great difficulty to get their message out to the others who suffered from the same illness in the days before the internet. They saved many lives and improved many more even though there was no "proof" of the cure except that patients were getting better. Open communication in the end was a blessing to thousands. I highly recommend the film and plan to read the book soon.

So here's to more great information sharing and open minds! Go Neurotalk community!

Best wishes for healing,
Anka

You're certainly welcome, I'm just trying to take a level headed approach to the cacophony of data that we are all confronted with.

As you surf around the various MS websites, you'll find that there are "evangelical" communities of patients who fervently push their own view of the disease. This evangelical fervor is especially prevalent in folks convinced that chlamydia pneumonia or Borrelia Burgdorferi are responsible for MS. You'll also find it in some patients who are convinced of some of the more far out claims (mercury amalgam fillings, diet soft drinks, etc.). The irony is, all of these groups may in fact be correct, or at least partially correct, but only for a specific subset of MS patients.

It can all be very confusing, but none of these claims should be dismissed out of hand. I am certain that chlamydia pneumonia, Borrelia Burgdorferi, and EBV all play a part in the MS story.

The problem is, by committing to a combination antibiotic protocol, the patient is denying themselves access to other disease modifying drugs. Though these drugs are far from perfect, they do have some demonstrated efficacy, and for some patients do stem the tide of the disease. It would be unfortunate for patient who might be helped by one of the current disease modifying therapies to find after two years that the combination antibiotic protocol has failed them, when one of the other drugs may have slowed their disease progression.

It's all a bit of a crap shoot.....

MS is a death sentence? LOL Isn`t life a death sentence? Just my opinion we aren`t as smart as we like to think. Do I know the cause? No! Until I find it I am blaming aliens!:eek:

Yeah, the aliens came down, abducted us, probed us all with with giant alien probes (anyone ever see the South Park episode where Cartman was abducted by aliens?)

and then they infected us with the alien microbes to get us ready for the colonization of the planet...

oh wait...that's the plot for an X-Files episode. (loved that show)

But, blaming aliens is a good excuse, just as good as blaming the Epstein Barr Virus, Lyme and genetics.

There are progressive forms of MS that are fatal - I'm remembering Grassman who was a member of BT. There have been others in the MS community we have lost in the past year - Harry Z wife and others I can't remember....sorry.

However, most with MS have a normal life expectancy.

I'm reading how on CPN your MRIs are proof it's working. The MRI is a wonderful diagnostic tool but it's not reliable for predicting progression or lack of progression. Lesions disappear all on their own, with or without treatment.

There are those who have alot of lesions with little to no disability and those who have one or two with alot of disability. You can have symptoms and the MRI can remain unchanged or your feeling fine but the MRI shows active lesions.

MS is a very strange disease -IMO. Your MS can be quite severe, possibly unable to walk and months down the way it's as if there was nothing wrong with you. That is the nature of this disease - for some. There are no miracles just a disease that does what it wants when it wants and sometimes with or without the patient using any meds.

I agree very strongly with Marcstck and believe the same.

Does anyone else get the feeling that "rude" and all the other visitors that have suddenly popped up on this thread are all one in the same (with the exception of Barbara maybe) - just to keep the thread going and people whipped up?

That seems to be how they go about it.

They rarely introduce themselves on websites but just post about CPN. Then they go back to their website and discuss how they have been "flayed" on whatever forum.

I feel that much information has been shared here and each individual member can decide for themselves what they might care to do with it.

It seems that the discussion has now turned, though, so to prevent upset, I'll be closing the thread.

Thanks, everyone!

KD

Edited to add:

I LOVE THE MEMBERS OF THIS FORUM AND THE CARE HERE...Y'ALL ARE AWESOME. :)