Combo treatment

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Re: Combo treatment

Postby Lyon » Tue Jul 25, 2006 5:17 pm

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Postby HarryZ » Tue Jul 25, 2006 5:20 pm

Hi Bob,

You're not the first person who has brought up that example but I've never read the report and I'd like to so I'm going to try to find it online and read it before responding.


These docs published a paper on their findings. I have only read a few excerpts on it but can't remember just where. I also read that some of the more conservative docs didn't agree with what they said.

If it really was a case of MS to begin with, it was a weird one. Maybe it happens but I've never heard of anyone as young as 17 dying of a single MS exacerbation and I don't remember reading of anyone at any age dying from an exacerbation?


From what I know, it was indeed MS that this young lady had. But this kind of fatal exacerbation is very, very rare and that's why Prineas and Barrett were privileged at being able to autopsy such a case so soon after death occurred.

Harry
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Postby Lyon » Tue Jul 25, 2006 6:08 pm

oo
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Postby HarryZ » Tue Jul 25, 2006 8:24 pm

Hi Bob,

Doesn't it seem that a fatal exacerbation being admittedly very, very rare automatically make the situation not representative of the vast majority of MS cases and gives good reason to question whether it was MS at all?


What was rare about the exacerbation was that it was fatal. Although not common, serious exacerbations do happen. A friend of ours living here in London, ON had a very serious exacerbation about 1 1/2 years ago and was extremely sick in the hospital for a couple of weeks.

This young lady who died, from what I read, definitely had MS. What totally surprised Prineas and Barrett was the fact that they found no evidence of the patient's immune system being involved in the very bad damage to her myelin.

Harry
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Postby Lyon » Tue Jul 25, 2006 8:44 pm

oo
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Postby HarryZ » Wed Jul 26, 2006 6:32 am

Hi Bob,

You mentioned in an earlier post that there were a lot of critics of this information.


I don't believe that I said there were a lot of critics but I read a few comments from MS researchers who didn't agree with his findings.
Here is a link I found which is an abstract of the 12 similar cases Prineas and Barrett did after they autopsied the young lady who died. They went back and looked more closely at some previous specimens that they had saved.

http://www.azomed.com/?id=1053

I'm thinking that you would have to search the Annals of Neurology to read the entire paper and am not sure if you need a subscription to do so.

I can't really find about it either positive or critical but as far as I'm concerned that doesn't affect it's credibility. When MS is involved it seems that if something doesn't fit the preconceived notions of the mainstream it goes nowhere.


I'm a supporter of Prokarin which many readers on this forum are aware. It doesn't work for everyone but it has really helped my wife's symptoms for the past 6 years. She has SPMS. The story of how the NMSS in New York treated both the medication and inventor supports your statement of preconceived notions. It was this incident that turned my support away from the NMSS....likely forever!

Harry
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3 thoughts

Postby notasperfectasyou » Wed Jul 26, 2006 8:14 am

I've read the thread and I agree that posting photos will not cause progression. Was that the topic?

Ok, seriously....

1) We are leaving Avonex and starting Copaxone and will be getting on Novantrone ASAP. But in the study that was mentioned, folks did Novantrone first. Is there reason to think that this will effect the outcome? Afterall, we will continue using Copaxone post-Novantrone.

2) I don't think we're second fiddle in that we get the drugs that didn't work for cancer. I've read a lot of stuff and still am, mainly medical journals and I try to stay away from anything that includes a photo of a man in a white lab coat. Research on cancer, aids and MS ALL involve the immune system and some aspect of it's imperfection (I won't use the word malfunction). So it stands to reason that the folks who are chasing down AIDS and Cancer would learn a lot that's useful in MS and might even develop drugs that might work in MS. Oh, we should add spinal cord injury folks to the list too. I think the MS research folks get a decent jump on things because they can piggy back on work that is otherwise focused on other diseases.

3) Mystery agent and the the 17 year old girl. I agree, it's very interesting. I agree that the entire CAUSE of this could very well be something outside of the immune system and it's WBC's. Could, Believe and May are very key words in any MS related Medical Journal article. I'm open to all possibilities. I do think it's very enlightening to read about suppressor cells - another theory. Of course, the thing that causes the disease may not be the thing that perpetuates the disease. And if you read a fair amount about suppressor cells, you quickly realize just how imperfect a normal working immune system is. So, maybe, just maybe, altering the immune system with stuff like Novantrone can provide a second chance by reseting the system to a more normal state. Of course, even if that's the case, we don't know if the same mystery agent is lurking a ready to start the process over again. Maybe a study of folks who didn't get any benefit from Novantorone is needed. napay
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Postby Lyon » Wed Jul 26, 2006 1:52 pm

oo
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Postby HarryZ » Wed Jul 26, 2006 5:12 pm

Hi Bob,

I'm glad you mentioned that because I was going to ask you what your "favorite pony" is. I'm not familiar with Prokarin so you've given me something else I need to look up.


The accurate info on Prokarin can be obtained at www.edmsllc.com


If you have any questions about it, I'll be glad to try and answer them.

Harry
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Postby Lyon » Wed Jul 26, 2006 6:42 pm

oo
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Re: 3 thoughts

Postby Lyon » Wed Jul 26, 2006 7:31 pm

oo
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Postby HarryZ » Wed Jul 26, 2006 8:49 pm

Hi Bob,

I was a little dissapointed to find that one of the first pages I clicked on wanted $19.95 plus $5.00 shipping and handling for a book but I did find some free information on the site that I am reading now.


Never noticed that before but in reading the paragraph, it does mention that if you want to read info about the book, please click on the link.

If you ever end up reading that book, you'll come away just shaking your head on how certain aspects of the established MS world of medicine operates.

So far it's interesting.


I'll never forget the first seminar my wife and I attended about Prokarin in Toronto. Elaine Delack was there of course but most of the medical work was explained by Dr. George Gilson. It was quite fascinating and my wife, a nurse herself and the most reluctant when it comes to taking drugs, was very impressed. It was there that she decided to look further into using Prokarin.

Harry
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Re: 3 thoughts

Postby notasperfectasyou » Thu Jul 27, 2006 6:51 am

Lyon wrote:
notasperfectasyou wrote:So, maybe, just maybe, altering the immune system with stuff like Novantrone can provide a second chance by reseting the system to a more normal state. Of course, even if that's the case, we don't know if the same mystery agent is lurking a ready to start the process over again. Maybe a study of folks who didn't get any benefit from Novantorone is needed. napay


Hi Napay,

I agree. I hope for the best but it will be interesting to see what the long term results are after the treatments.

Bob


I liked the other picture of you better.
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Re: 3 thoughts

Postby Lyon » Thu Jul 27, 2006 1:04 pm

oo
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Postby dignan » Thu Jul 27, 2006 4:08 pm

I have to jump in here about the Prineas & Barrett paper as there was just a little something about that on the Accelerated Cure Project site from a presentation made at a recent conference at Johns Hopkins.



Pathological evidence for immune effector heterogeneity in MS – Claudia Lucchinetti

Dr. Lucchinetti, who has done extensive research on MS lesion tissue, reviewed various pieces of evidence concerning MS lesion patterns and characteristics that have been identified. Much of this related to her findings of four different lesion patterns in MS biopsy/autopsy samples.

In type 3 lesions, MAG (but not MOG) is missing; this phenomenon is also seen in some viral and ischemic disorders. One hypothesis for this phenomenon is that nitric oxide (NO) compounds damage the mitochondria of oligodendrocytes which leads to energy failure in the cell.

When interpreting the Barnett & Prineas paper that presented multiple lesion patterns simultaneously in one patient, keep in mind that the subject had recently had steroids which may have dampened inflammation in the tissue, and that certain lesions may have been caused by hypoxia around the time of death as opposed to being true MS lesions.

http://www.bostoncure.org:8080/article. ... =nocomment
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