.......

[NHE]

The 4% of healthy, normal people who had one stenosis in Zamboni's research - what if they become CDMS in five years or ten years? Would be interesting to know if Zamboni will be following up with them.

Agreed. What would also be interesting is to do MRIs on that 4% and see if they have silent lesions consistent with those in MS.

NHE

[mrhodes40]

BINGO!! right on! I also think that people who lost their jugulars to neck cancer or severe neck trauma ought to get MRI's to see if they develop silent MS type lesions over time as well. The problem is such people rarely live long....
...and if these poor souls develop some kind of neuro issue it is seen as a sad side effect of what they have been through, of the chemo or some such thing.

[NHE]

BUT we have never, ever found the direct evidence of autoimmunity....the antigenic target

This statement confuses me. It has been my understanding that Opexa's work on Tovaxin has revealed several antigenic targets in MS in each of PLP, MBP, and MOG.

NHE

[CureOrBust]

Gollllleeeee. A peson can't go spend the day at the country getting a permit for a deck without everyone doing everything while you're gone.

Boy, but you got your revenge with the length of that post!!!

Those that do not understand this theory, have a LOT of reading to catch up, those that disagree in its relation to MS, should maybe go rial up some others with questions in the ABX forum.

[Loobie]

I've been writing with these people for three years and I care a lot about them and I want them to have hope, but I want them to have hope based on valid reasoning. Telling people only what they want to hear seems like the "nice" thing to do, but it's pretty shitty in the long run and it's not the way things were done at thisisms, until recently.Bob

Bob,

The only thing I'm going to say about this subject is that this is the part I find the most patronizing. "but I want them to have hope based on valid reasoning."

What makes you think you have to save us from ourselves and our naivete? We are all grown ups capable of independant thought. Emotions are a big part of this. I can't be a complete Spock about all of it, but I'm not going to be doe eyed naive about it either. Debate for the sake of fact finding is one thing. But constantly stating that reasoning isn't there and we need to "watch out" for the false hope monster is ludicrous. The reasoning may get there and it may not, it's freaking new for Christ's sake. Let it play out. Just get to think how smug you get to be if this all turns out to be a crock of shit?

[mrhodes40]

My understanding based on what I have read here on TIMS, and I claim no expertise here at all, is that they started from the assumption that MS is autoimmune and MOG myelin and PLP were the targets.

They therefore made a peptide sequence that was based on the known genetic sequences of those (didn't they patent the gene sequences they discovered for this?) and then tested people's blood to see if there were immune cells that reacted to the peptide sequence they had created. Some people did, but more did not so they expanded the peptide sequences to get more people to react.
http://www.thisisms.com/ftopict-4202.html

Is this understanding accurate??

I never was invited to that trial though my MS neuro was a participating center. He told me early on it was not working at all well and he was disappointed. His comment was that only "10%" of people were testing positive for the antibodies and were therefore treatable. I believe they got the number up by expanding the sequence as the above thread indicates and Tim told me that they were having about a 50% reactivity, not 10% as my neuro commented, when I wrote and asked him about that.

But in other AI diseases you can do a blood test and see if people have that antibody. We do not have a specific MS antibody that is present in all people with MS and which is testable. If we did, we could block it and MS would be over. Tovaxin did not work well and probably because it did not target an antibody that was causing MS as was hoped.

Prineas and Barnett documented new MS lesions with oligodendrocyte death and no immune activation. This would suggest something killed the oligo's and THEN the immune system came along to clean it up.

If such a process took place, then there would be dead myelin. In fact, at the site of MS lesions there are macrophages that have "eaten" myelin. Some have assumed this means this is autoimmune, but if myelin is dead it is the job of macrophages to do that. As such it may make sense that there would be some MRTC's.... But since they did not initiate the damage, blocking them will not stop MS. Exactly what seemed to be true in Tovaxon trials....

I am very open to be corrected here if you know something different than what I understand... I do not know everything and that is certain!

Personally I really wanted tovaxin to work. It is safer and more targeted than what else is out there. The theoretical model was really good and it was going to be a good drug I thought. I would still be glad to see it proven helpful

[Loobie]

Boy I really did too! But I didn't understand it that well. I just loved Tim's story and wanted me some of that.

[patientx]

We do not have a specific MS antibody that is present in all people with MS and which is testable. If we did, we could block it and MS would be over.

Marie,

I don't quite see that last statement. For instance, in Crohns's disease, there are 3 identified antibodies. But, so far as I know, Crohn's can't be cured by blocking these.

[guitarguy]

You said something about the 'hopelessness of our disease' Geeez! I got news for you, there is hope for us.
(I can do a search and find the post)

Now I am back a year later and the same thing all over again, now in the CCSVI forum.

I'm literally paranoid to say anything right now lest it be taken wrong, but I would appreciate your looking that up if you don't mind because I don't remember. After reading it I will give you my reasoning and hopefully it won't sound like an attempt at justification.

http://www.thisisms.com/ftopic-5236-day ... ss-15.html


"I'm not an expert on FDA procedure but in this case, considering the hopelessness of the disease and the effectiveness of the treatment, I think that presenting the FDA with large numbers of favorable enough results, in the end is going to negate the need for a phase III."
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Your wife has MS and I understand you are doing some reading and researching treatments to help her. I think thats fantastic trying to help your wife. It's nice to see spouses here who care.

But sometimes it seems like some wierd hobby for you to post here just stir the pot. It's like you almost come off as if you feel superior to us with your wordy posts trying to make us look stupid or feel even worse about our disease. Everytime there is a postive, you post a negative.

[Jamie]

I'm surprised by Lyon's tone it's very dismissive - "can't cause MS", that is a very assertive and 'sure' viewpoint that turns most off us off, probably because that same dismissive tone conjures mental images of patronising neuros that most of us have endured.

However, in a way I'm glad he's against it. There's been lots of posting of very compelling evidence (to me - so much so we're going on Monday to see doctor Dake). Bob is very intelligent and thorough and can only add value.

My position on this is clear - regardless of MS, jugular blockages CANNOT POSSIBLY BE A GOOD THING and must have an impact on something so delicate as the CNS.

It will be good to debate this in true THISISMS style.

What I will say is people have been a lot more positive about theories backed up by a lot less evidence.

I love this website.

[Lyon]

..

[Sharon]

Bob -

I've only said that it hasn't been proven to benefit people with MS, which is only a factual statement

Yep, your statement may be correct until September Zamboni's research will be published and released at the vascular symposium in Italy in September.

And, (yes, I know it is just a few of us) but the Stanford group is seeing benefit - and, we are not that far away from our treatment - Jeff is only two months out.

Sharon

[mrhodes40]

Cure said

got revenge

LOL! Sarah says I write the book of rhodes and it embarrasses me that she is right. I am loquacious in person too. My kids hate it about me. sorry I go on and on.

Also you mention the thing that is at the heart of this, there is a lot here to understand and you have to study it to get it. There's no easy way.

Lew, As for the naive patients, I agree that most of us here are adults and can answer for ourselves and should be free to discuss what we like to. some of us have no options! At all! Thank GOD for this new idea and the freedom to talk about it.

That having been said I would not recommend new people get the treatment unless they have some reason to believe they can't do the regular ones or those have failed for them. If your MS is quiet and you can afford to wait a bit, do so. this is new.

PX; As for Crohns disease there are not three antibodies identified that are self antigen that I can find?? I see that there is some to saccaromycess cerivesia which is yeast that is in bread, but that is not a self antigen? what three antibodies are you referring to?

Bob: I believe you mean well. And I don't blame you and your wife for waiting to get stents or anything she has the luxury of time and can afford to wait for more definitive answers. I envy you guys that and would be there myself...oh say 5 years ago. The answers will be out very soon though and people will have more to go on.

Discussion is good for all of us and for the subjects that are the recipients of such scrutiny
marie.


I appreciate TIMS and discussion it is good and important for us all. that having been said a certain amount of

[Lyon]

..

[patientx]

PX; As for Crohns disease there are not three antibodies identified that are self antigen that I can find?? I see that there is some to saccaromycess cerivesia which is yeast that is in bread, but that is not a self antigen? what three antibodies are you referring to?

Marie:

You're right - the blood panel I had consisted of pASCA, which is the yeast, and pANCA, which is seen mostly with ulcerative colitis. There was a third, but it slips my mind.

However, my larger question remains: if an auto-antibody could be identified for MS, and the cure would be simply to block this antibody, why isn't this done with proven auto-immune diseases.