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Re: T cell research

Posted: Fri Dec 29, 2006 10:57 am
by HarryZ
Bob,
But Harry, even 13 or 14 biopsies is too small of a sample size when the results are only attributible to two researchers working together.
Too small a sample size for what? Prineas and Barrett weren't trying to prove anything but ended up discovering that the auto-immune system simply wasn't involved in causing the demyelination in these particular cases. This is a very interesting discovery because up until this time, the researchers were "fixated" on the immune system as the only culprit in MS.

It is stated that the immune system goes after myelin when it detects inflammation. That is a normal response. But what some researchers say is that the immune system is reacting to the inflammation as opposed to causing it. With MS being a long time,chronic disease, I would imagine that most brain autopsies would show some kind of immune system activity since it would take years and years for the patient to succumb to the disease. Finding what Prineas and Barrett did would be quite rare and obviously difficult to duplicate. Obviously you don't take brain biopsies of MS patients who are experiencing an attack so it's all but impossible to determine first hand what is happening to the myelin at that time.

If MS were an auto-immune system disease, then I would think that the CRAB drugs, over the years, would have had a far greater effect on controlling the disease. That simply isn't the case and their results have been poor at best.

At lease now, researchers have an option to look at and perhaps be able to answer a few more questions about this mysterious disease.

Harry

Posted: Fri Dec 29, 2006 12:23 pm
by Lyon
..

Posted: Fri Dec 29, 2006 12:48 pm
by HarryZ
Bob,
It's an admitted mystery to me regarding how researchers determine in an autopsy what damage is and isn't autoimmune. As I mentioned, the only basis for my argument is that despite the findings of Prineas and Barnett, which wasn't exactly recent, the vast majority of researchers continue to embrace the theory of autoimmunity.


Somehow they are able to detect the presence of certain kinds of T immune cells that indicate the immune system has been involved in the particular area. I would think that the vast majority of recsearchers continue to be involved in the autoimmunity theory because that's where their bread and butter lies and that's what big pharma funds. I don't know if you have ever read Dr. P.O. Behan's paper on MS but he explains the past history of MS research and how futile the results have been following this theory.
Regarding the crabs, I've read speculation but 've never gotten the impression that researchers are entirely able to explain any positive effect the crabs have on the human system so I don't know how anyone could determine if they would have worked better or worse if autoimmunity is really a factor.
I think trying to break it down as simple as possible, the CRABs are supposed to prevent or at least reduce certain parts of the immune system from crossing the B/B barrier and doing the damage to the myelin. I think they have some minor effect on the disease but certainly nothing even close to being highly beneficial to the MS patient.
I know that we aren't supposed to consider the findings of studies and clinical trials as evidence until they are approved treatments but if you don't think MS is autoimmune how do you console the impressive results evidently seen with the use of Campath 1H, High Dose Cyclophosphamide and Tovaxin which are only directed at the Lymphocytes and in the case of Tovaxin, only the myelin reactive T cells?
When you give anyone these very potent, anti-cancer , powerful immune system altering drugs, you throw the patient's system into "over-drive". The results are very mixed with some patients benefiting for a short time while others can become very ill. You normally can't take these drugs for long periods of time and/or there can be some pretty dangerous side-effects. But in almost every case, after initial positive results, the MS eventually marches on and continues to progress.
Have a wonderful New Year but watch your egg nog Harry. Remember that Ian is intending to spike it with Tysabri!
Bob
Geez, good thing I don't drink egg nog....but if Ian were to spike it, the cost of doing so with Tysabri would likely bankrupt him :D

Have a Happy New Year.

Harry

Posted: Fri Dec 29, 2006 2:45 pm
by Lyon
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Posted: Fri Dec 29, 2006 5:54 pm
by CureOrBust
HarryZ wrote:But in almost every case, after initial positive results, the MS eventually marches on and continues to progress.
Thats something i have failed to read of as yet.

Posted: Fri Dec 29, 2006 8:49 pm
by HarryZ
Bob,
Despite that, this isn't about how dangerous or how long lasting these treatments are. It's about the direct and obvious impact that these lymphocyte (immune system) depleting treatments seem to have on the MS disease process.
And what effect on the MS disease process is that? A patient's entire immune system gets shaken up, all of their body systems go into extra work and they may feel better for a period of time but so far there is no evidence that these heavy duty drugs have any long term effect on the progression of the disease. Even an immune system altering drug like Novantrone, which has had a lot of testing done on it with MS patients, doesn't keep the MS from progressing after a period of time. Perhaps the MS gets "interrupted" but whatever is at the root cause of the disease continues to march on. And until the docs discover this root cause, I'm afraid pumping a MS patient's system full of these heavy duty drugs isn't the answer.
Not specifically to make life miserable for you, but this is part of the learning process for me. I honestly am interested in how the opposing view explains away autoimmune involvement in the face of this kind of "evidence" so your input on this will be appreciated.
The opposing view doesn't "explain away" the autoimmune involvement. The immune system pretty much reacts when it recognizes a problem somewhere in one's system. With an MS patient, it sees that there is inflammation around damaged myelin and sends off its cells to try and "fix" this. Well, more problems and inflammation are caused. The CRABs try to reduce this reaction of the immune system but as we know they have very limited effect. Try heavy duty immune system altering drugs and they have an effect as well but nothing long term.

What the "opposing view" people say is that the immune system is "reacting to" as opposed to "causing" the original inflammation. When Prineas and Barrett made their discoveries during their autopsy work, this opened up a whole new episode in trying to find the answer. Did they prove anything? Nope! Have decades of work by the immune theory docs proved anything? Nope! Nobody yet has been able to prove the auto-immune theory....taking it a step further....nobody has been able to prove anything about MS as yet. It's still all theory and speculation after all these years and that has to be frustrating for MS patients everywhere!

Take care.

Harry

Posted: Sat Dec 30, 2006 9:17 am
by becca
Multiple sclerosis is believed to be an autoimmune disease.

this was in an article from 16 years ago..

Posted: Sat Dec 30, 2006 9:27 am
by HarryZ
becca wrote:Multiple sclerosis is believed to be an autoimmune disease.

this was in an article from 16 years ago..
If you check the articles on MS today, the same sentence is included! The sad part that it is 16 years later and nobody has been able to prove this nor has a cause been determined. Pretty hard to figure out a treatment or cure if you don't even know what the cause is!

Take care.

Harry

Posted: Sun Dec 31, 2006 10:22 am
by Chris55
Okay Harry Z...you have put all of my thoughts and opinions into your posts! To me, it does not matter if they autopsied 1 or 1 million brains. The fact that they did NOT find an autoimmune attack is what is so critically important to me. I am a bit more extreme than you in my thinking. I don't believe in "autoimmune" diseases, period. I think it is a politcally correct, trendy name given for "Misc." or "We don't have a clue in hell!" They know there is inflammation in the autoimmune diseases---arthritis, diabetes 1, MS, etc. What they do not know is which came first, the chicken or the egg? Is the immune system responding to some kind of infection (prompted by inflammation) or is the immune system attack causing the inflammation?

I believe down to my toenails that the direction of research is totally contolled by the CRAB drug companies and will continue to be as long as they can suck in the money.

Here's my biggest problem with all of this...I care not about what is available or what "might" be over the horizon. You people need help NOW, NOW, NOW! Were I the one with this dreadful disease, I would try ANYTHING--even baying at the moon on every second Tuesday--IF it garnered even a small amount of help! There have been SO MANY drugs, supplements, drug trials that point to great improvement for this disease and continue to be shot down and smothered by the medical industry. (And you really don't want to get me started on the "stem cell" miracle--NOT!)

This is all a travesty of justice--period! So, I will continue to read everything I can, pass it on to my child and pray, pray, pray for justice for ALL of you! I will hope and pray we ALL have a wonderful NEW YEAR!

Posted: Sun Dec 31, 2006 10:28 am
by becca
travesty of justice--period!
so true Chris(everything you said) thank you for saying it...

I agree!

Posted: Sun Dec 31, 2006 10:45 am
by lyndacarol
With becca, I thank you, also, Chris. You said it all so well for me, too.

specifics

Posted: Sun Dec 31, 2006 11:01 am
by gwa
Chris,

Do you have any specific examples of such drugs, or is this just your opinion?

There have been SO MANY drugs, supplements, drug trials that point to great improvement for this disease and continue to be shot down and smothered by the medical industry

If anyone here has documentation that the drug companies are controlling all MS research for their companies monetary gains, with no consideration for the patients, we need to give such data to a broadcast personality for it to be researched and shown to the public in a medium such as television.

If no such documentation exists, people need to state that such thoughts are personal opinions and not readily proven fact.

I personally believe that much of the research is being done by university professors, medical researchers, and biotech upstarts which are very much trying to cure this disease.

As once espoused by bromley, most of us would be dead from another disease by now if the pharmas had not invented antibiotics, medical supplies, and other medicines.

I personally would have been dead by the age of 5 due to diseases that needed anitbiotics to save my life.

gwa

Posted: Sun Dec 31, 2006 11:11 am
by becca
maybe when someone can find out the real truth we can all share in it. do u think if there was documentation to support these claims it would be available to us to post for all to see com on a little commom sence here would go a long way.

Posted: Sun Dec 31, 2006 11:31 am
by Chris55
gwa--Minocycline, LDN, the treatment my daughter is currently on, supplements/diets geared towards MS to name a few. Evidence of the "travesty of justice"? Geez, I could go on forever! Here are a few...

1. Minocycline: Small trial (10 people I believe) for 3 years. An over 80% reduction in lesion rate. Next step: Phase III. OOPS! Whole thing bought up by Copaxone for a dual (God help me!) trial. Doctors encouraged to please NOT prescribe Minocycline so as to not sully their combo results. I actually read those very words. (Can you see through this one, gwa???)

2. LDN--being stopped at every turn--PERIOD!

3. Go back a few years and check out the drug trials being conducted with OUR MONEY by the MNSS. Avonex vs. Betaseron, Copaxone v. Avonex, Avonex v. Copaxone v. Betaseron, etc. There were ONLY 5 drug trials and EVERYONE involved the current CRAB drugs! I simply ask: Why???? Don't you??? Furthermore, give this a try. Just see if you can get a breakdown of the MNSS operating budget and how much goes where. Oh, and good luck!

4. Now this one is very interesting....about 15 years ago, there was research (yes, I read research results going back years!), into how many people originally diagnosed with optic neuritis went on to be diagnosed with definitive MS. It involved about 800 people and the percentage of those who went on to develop MS was about 50%. Now---jump forward to "now". In order to support the efficacy and timeliness of putting someone on a CRAB drug at the first sign of MS, research results were recently released stating that ONLY about 50% of folks who were immediately put on a CRAB drug actually went on to develop MS.

5. The continued refusal by the medical profession to even acknowledge the reality of Lyme Disease. Now, I cannot give you the #s here, but there was research into the readings of the spinal tap test as it pertains to MS. If the # was between ? and ?, MS should be strongly considered. If, however, the #s fell between ? and ? (even though these numbers are used as evidence of MS), a differential diagnosis should be considered. Examples of other possibilities included Lyme Disease. (LD causes brain lesions just like MS. The configuration is, however, different.) My daughter's MS specialist said he could not consider LD as a differential diagnosis since he knew nothing about it. Great!

I used to save all of these articles/research I came across. Then I stopped. Anyone can do what I did. I call it self-education. One will search what interests him/her the most. We all have very different priorities on this board. I understand that and respect if highly.

I am a "why, why, why" kind of person. Always have been regardless of the subject. As I said, I am not a doctor but I can read and I can understand (especially the "Conclusion") and I am not dumb.

In the end, these are all MY opinions based simply on what I read. And I read about not only MS, but the drug industry itself. I work for the SC Dept. of Mental Health. We just got a news release on the dishonesty of the drug company Lilly and the millions (billions) of dollars they earned at the expense of the health of mental patients. (Product could cause diabetes--Lilly knew it but, of course, forget to share that one little feature. Also encouraged doctors to misdiagnose patients so that they could be put on this drug.)

The drug industry is just as sleazy as all big businesses today. Again, I call it the "Enron Mentality". Honesty and integrity are NOT alive and well right now.

As I said, I have absolutely hours of information I could share here. But I have nothing to prove to myself anymore. The picture is now "crystal clear" for me personally. God bless! Chris

Chris you are great

Posted: Sun Dec 31, 2006 3:07 pm
by MISunshine
just wanted to add

Copaxone states relapse rate is about 1 in 5 years compared to not taking their drug. So I took their drug for two years, nothing for three and just had my first Major relapse...hmmm, 1 in 5 years...that fits their statistics.

You and I and my husband could have great conversations as we all come from the same state of mind. I hope and pray for your family. Take care.

MISunshine