Why autoimmune?

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Why autoimmune?

Postby sou » Sat Jan 31, 2009 4:43 pm

Hi all.

I have the feeling that I am missing something fundamental. Why is MS autoimmune? What is the evidence?

I disagree with this dogma, but I have been looking for studies in PubMed proving this hypothesis. But it is always considered as a fact without citation. What I have found so far is that SOMETIMES there are lymphocytes, either B or T, at the site of the lesion. How can this be enough?

Let me put it a little different. A short circuit ignites a fire in a building. 10 minutes AFTER THE FACT, hundreds of firemen gather in an attempt to put it off. Since every time a fire starts and firemen are present at the location, wouldn't it be stupid to say that it is them who caused it?

Of course, this is an over-simplistic approach. Assuming that the immune system is the "root of all evil" in MS is over-simplistic, too.

There is much information about non autoimmune hypotheses in these forums. However, I thought that gathering opinions and evidence that only counter the autoimmune hypothesis, without necessarily presenting some other cause for MS, could be useful. What do you think?

Thanks,
sou
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Postby chrishasms » Sat Jan 31, 2009 5:53 pm

It must be auto immune because when the immune system is killed off the symptoms go away and damage repairs itself.
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Not autoimmune!

Postby lyndacarol » Sat Jan 31, 2009 6:15 pm

There are several us here, sou, who are in the "MS is not an autoimmune disease" camp. There have been articles posted to support that view.
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Postby BioDocFL » Sat Jan 31, 2009 8:00 pm

Why is the autoimmune reaction primarily at specific sites (lesions) and not every inch of myelin? Why primarily myelin as the target? To me it seems there is something going wrong with the myelin at some sites and the immune system is focusing on that initially, as opposed to something going wrong with the immune system and it manifests as an autoimmune attack on some innocent myelin.

Knocking out the immune system may alleviate the disease for a while. But when the immune system is knocked down, there could also be a knock down of EBV activity, whether it was in immune cells or non-immune cells. T cells are often the hosts. When the therapy wears off and the immune system returns to its prior state, perhaps latent EBV hidden in cells is once again able to reactivate and in some way instigate more neurodegeneration that provokes an autoimmune reaction again.
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Postby notasperfectasyou » Sat Jan 31, 2009 8:53 pm

Ah, the magic of office cooler logic - I heard about the game on the radio this morning and at lunch I can talk like a real sports junkie.

My neuro told me, it must be true. Ihave the best neuro in the entire world, my doctor has degrees on the wall. lots of 'em.

I've written a lot here about discernment, yes? Sick of it yet? I don't hold any view against anyone, but please be prepared to explain your understanding and drill it down to all the 5+ syllable words they use when they write those peer reviewed double blind comparable sampled p-valued articles which always open with some sort of qualification in the opening paragraph that goes something like this:

...... which may be an autoimmune pathology.

may. hummmmmm.........

Could be in some folks, might not be in others. But isn't it the coolest thing in the world that Kim is walking better, and becoming increasingly more ABLED since she's been on bacteria killing therapy? What's not to like about that? It's easy to regurgitate what experts have told us, but reading piles of crap can be personally enlightening.

But, then there's the rule of the lost keys.

Where were they? All of us together now ....... IN THE LAST PLACE YOU LOOKED! What the heck is that supposed to mean? It means, each of us find and generally get attached to the last answer we found and accepted about MS. Hey everyone, I figured out the answer to my last rant here. Special thanks to Lyon for tolerating me. THANK YOU LYON!!! Please let me repeat, this is golden....

Each of us find and generally get attached to the last answer we found and accepted.

For Kim and me, it's not autoimmune. I spent a long time here studying autoimmune. Then I very bravely cast it aside in an enormously humbling leap into darkness and after wallowing around in a directionless void, we arrived where we are today. Good Luck on your own personal discernment. Ken
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Postby Lyon » Sat Jan 31, 2009 9:32 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:07 pm, edited 1 time in total.
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Postby DIM » Sun Feb 01, 2009 1:19 am

It must be autoimmune so doctors, big pharmas etc can continue the milking, MS is a big cow for them!
Just think what is going to happen if one day someone could proove it isn't...
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Postby Loobie » Sun Feb 01, 2009 9:27 am

I don't really care what IT is. I am like Ken in that I agree that it's human nature to believe and act on your most recent 'stuff you just learned'. With that in mind, I've been reading basically everything and have come to the conclusion that since no one really definitively knows, that I'm going the anecdotal route and trying what others have done successfully. The thing I keep coming back to is WHAT IS IT THAT I CAN CONTROL. There is only one answer, diet. I'm going to stay on Tysabri because I feel at least the same day to day since I've been on it, but no one fully understands why that stuff works. When you watch the DVD of the mechanism of Tysabri you realize after hearing it numerous times, that they don't understand the action of the drug fully with all the "mays" and "it stands to reason's" that there are in that video.

So with that in mind, I take that drug on blind faith and, to date, it seems to help, but nothing more than that. So I must look at my behavior which is the only thing I can really control anyway. And then I look at my diet and I really don't eat all that well. I always thought I did because I got all my nutrients by default since I ate so many calories a day to keep up with my very high burn rate. Well that has slowed way down and I need to give adjusting my diet a try. I've dabbled in it, but never really got off the ground with it. So whether it's autoimmune of not, I don't really care. I just know I have this neurological disease and I'm just going to try to change what I can to just make myself healthier. I worked out and didn't smoke and all that stuff for years, and it probably masked the fact that I eat like hell. Typical american diet; red meat about 4 nights a week, and veggies if I had room.

So this post doesn't add anything to the argument for or against, but I just wanted to chime in and say that from a patient's perspective, I don't really care what it is. I just need to go about the business of making it easier on me if there's something I can change that will make that a reality.
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Postby mrhodes40 » Sun Feb 01, 2009 9:57 am

I own a copy of Prineas and Barnett's paper, and while they do not state specifically that ms is not auto-immune the paper is damning for the hypothesis that MS is autoimmune. It basically offers the same thing y0u did; that the firemen got there after the fact, they have evidence including microscope pictures of lesions degenerating with no immune system activation. Would you like me to quote widely from that paper on this thread? It is opposite of what you asked for........
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Re: Why autoimmune?

Postby notasperfectasyou » Sun Feb 01, 2009 11:24 am

Lyon wrote:Although I'm from the "Dark Side" which leans towards the "autoimmune" outlook.


I like thighs and legs too. But seriously, I'd bet money, maybe not as much as my last bet on opxa, that when it's all completely figured out, it's a little bit of everything we discuss and think about and everyone will find that a part of what they have held true to is infact true. Hasn't Obama cured MS yet? I knew I was on the right path drafting Lyon. I knew it. Go Steelers!!! Ken
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Re: Why autoimmune?

Postby Lyon » Sun Feb 01, 2009 11:58 am

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Last edited by Lyon on Sat Nov 26, 2011 9:06 pm, edited 1 time in total.
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Postby Miss_Feisty » Sun Feb 01, 2009 12:06 pm

I haven't an intelligent argument to offer at this moment but I deeply understand the question Sou states:

I have the feeling that I am missing something fundamental. Why is MS autoimmune?


I have read several papers from Scottish and Australian researchers who oppose the autoimmune theory. The fireman analogy is a keeper, it makes sense as simple as it sounds.

Thinking outside the box is key. We are all here seeking symptom relief, trying to fix our own ailments because no one has the correct immediate answer for each individual. This we do know.

I can not regurgitate a scholarly paper to back up the multitude of information I've come across, but the autoimmune link still does not make sense to me either. We all bleed when cut, some more, some less and for various different reasons. This is ms to me. The body's reaction to bleed is the common element, but the reasoning behind the cut is variable.

The "recent things learned" is what human survival depends on in most cases. The positive and negative reinforcements with all animals. The caveman "touch the hot fire" syndrome, does it burn, does it still burn?

OUTSIDE THE BOX.....there are researchers who do try to look at the common theories and challenge them. DNA is also just a babe in arms in our history of medical science. There is more to come.

I hope our future graduates jump at the chance to challenge ms and challenge it well, just as every poster on this forum has done.
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Re: Why autoimmune?

Postby notasperfectasyou » Sun Feb 01, 2009 12:17 pm

sou wrote:There is much information about non autoimmune hypotheses in these forums. However, I thought that gathering opinions and evidence that only counter the autoimmune hypothesis, without necessarily presenting some other cause for MS, could be useful. What do you think?


Ok, in my personal opinion, understanding the autoimmune theory is important. I really mean that. It provides a significant background for understanding what is known about MS. I put together two posts a long time ago that are still relevant if you want more info than you really thought you wanted on auto-immune theory.


Understanding MS 101: Doctor Talk and People Talk


Understanding MS 102: My Doctor is Expressing Cytokines


Lyon, I completely agree. Ken
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Re: Why autoimmune?

Postby sou » Sun Feb 01, 2009 5:36 pm

Thanks for the interesting comments.

Lyon wrote:I've said many times that when it gets down to it, I could really give a shit less whether or not MS is autoimmune. Some people feel it's very important to be able to define MS as one or the other.....as if MS research were actually accurate enough to be directed at will. Those people are early to the learning process.


I completely agree that, from the patient's point of view, autoimmune or not is of no importance. But there is more to that from the side of the physician and the researcher.

Several medications, mainly chemotherapeutic agents, which can be very dangerous for the overall health, are prescribed for MS aiming to suppress the immune system. Many of them have never been tested in MS. Azathioprine, mycophenolate etc. Can these potentially dangerous substances be prescribed based on an unproven hypothesis?

Additionally, there has been too much time wasted on rats with EAE. MS is not EAE. EAE is not a model of MS. It is a model of what we think MS is. I am tired of hearing in the news about drugs that miraculously work in EAE. Of course, this is not a 100% pointless research since it yields results about how a damaged nervous system works. But the chances of finding a very effective treatment through it are disproportional to the amount of time and money that is put on it.

Thank you all.

sou
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Re: Why autoimmune?

Postby Lyon » Sun Feb 01, 2009 8:49 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:05 pm, edited 1 time in total.
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