This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

As most of you know I'm not a believer in the auto-immune theory of MS. I have no medical training etc but rely on basic observation. Inflammation is the body's response to something e.g. if you cut your finger it becomes inflammed as the immune system targets any foreign invaders. My gut feeling tells me that the same must be true with MS. Something is happening in the CNS and the immune system gets involved to mop up the damage. As yet, no one knows what is happening but damage is taking places - maybe a virus, bacteria or chemical imbalance.

For some reason the MS experts do not look at the problem in this way but focus on the response rather than the underlying problem. Pretty much all the licenced therapies or those in the pipeline focus on the immune response and the inflammation that follows. Results to date have been very poor and the therapies are described as slowing down the progression of the disease rather than stopping it (which we actually want). A number of recent research papers have shown that MS is much more than a disease of the white matter (myelin) but also affects the grey matter. In other words the theory that the immune system mistakenly attacks myelin must be considered highly questionable. Even very powerful drugs such as Tysbari only manage to slow down progression of the disease. Campath 1-H wipes out some of the T Cells but when used on those with SP MS unrelenting cerebral atrophy continued.

There has also been attempts to wipe out the immune system and replace it, but these experiments have had very limited effects. This to me suggests that other mechanisms are also causing damage in addition to when the immune system gets involved. I recognise that some have seen benefits with drugs such as Toxaxin, but it is too early to say whether such drugs affect the possibile underlying cause.

Despite all this. the researchers are still focussed on the immune response and inflammation. Relapses (whatever they may be) and numbers of lesions are easy to measure.

Treatments for SP are pretty much non-existent and for PP don't exist at all. For both of these, nerve loss is taking place (as it does for RR, but perhaps inflammation helps slow down the loss).

50-60 years of research have got pretty much no where. I would suggest that it is because the researchers are still focussed on the body's response rather than the underlying disease process.

Dr David Wheldon has proposed CPn as the underlying cause and many are following the abx regime. I don't know if this is the culprit in all cases, but it is an attempt to target the root cause. Perhaps the root cause for others will be a virus or something else.

My point - recent research has shown this vile disease to be much more than a disease involving myelin, the immune system and inflammation. There must be a root cause and until the researchers start to focus on this we are being fobbed off with ineffective and expensive treatments. The following article also looks at infections in relation to Alzeimers.

http://www.alzforum.org/res/for/journal ... fault2.asp

Sorry for the rant. I just feel that MS is like an old car rusting away and all the medical profession are giving us is a can of spray paint.

Very well put, like you Bromley I never believed in the auto-immune theory either. Your body doesn't turn against itself. I started on Dr. Weldon's protocol in August and then switched over to Dr. Sirram's protocol @ Vandy in October.

Not much to report except that the brain fog and the fatique has deminished greatly. The ABX treatment has helped myself greatly.

Read my post (natgas) under "Regimen" and check out the site "CPn Help.org" there are alot of folks there getting better and educated about the bug that may be involved in this and more.

It's a long road back but we didn't get here overnight either.

There is light at the end of the tunnel
Roy

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The hurrier I go the behinder I get....

I don't think anyone disputes that there is a trigger that starts the inflammatory process in MS. That trigger may well be an infection but why is it so hard to believe that the immune response gets out of control? All of the proposed pathogens EBV, CPn etc. are endemic yet virtually harmless in 99.9% of the human population. There is something in our genetic makeup that makes us susceptible to something more serious.

We've all seen those fantastic displays where they line up thousands of dominoes, kick over the first one and the others follow. Remove just one of those dominoes and the process halts. Righting the first one after it has started the process has no effect.

The trick is removing a domino that can halt the effect without causing a problem elsewhere as in Tysabri and PML.

Another analogy: Smoking causes lung cancer. It is however not the only cause. You can develop lung cancer without ever having smoked or having been exposed to cigarette smoke. If you develop lung cancer then stopping smoking is not going to help. The cascade of events has already taken over.

With MS clearing the triggering infection may not stop the deterioration.

All of the observed facts of MS including the grey matter deterioration, the failure of Campath and AHSCT to halt progression in the later stages and the subtypes of the disease can be adequately explained under the current auto-immune model.

If there is another model that can explain all of this then I would be interested to hear it, but I haven't found one.

MS and the whole immune system is a bloody complex problem. Just because they haven't got a cure yet does not mean that they are looking in the wrong place.

Take nuclear fusion, the holy grail of the energy world. We know the how's and the why's. You can create fusion on a desktop fairly easily if you build a Farnsworth fusor. However, generating energy in usable quantities without blowing the crap out of ourselves in the process remains a distant dream.

Give it time, the answers will come. Until then there is life there to be enjoyed. Don't let MS take more of your life than it absolutely has to.

Robin

p.s. See ya Wednesday

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Do not go gentle into that good night. Rage, rage against the dying of the light.

Ian,

Very well said! I've stated for a number of years many of the very same comments that you mentioned. But only recently have researchers started to find evidence of what you have written. It wasn't that long ago that I was raked over the coals on other MS forums for saying such things.

I continue to believe that trying to find super drugs to prevent the immune system in MS patients from working normally is a waste of time and money. Yet that's exactly where the vast amount of research dollars are still continuing to go with the pharmas still pulling all the strings.

Perhaps some day the situation will change and the cause of this dreaded disease will be discovered.

Harry

Harry

Firstly the idea is not to prevent the immune system working normally but to prevent it from working abnormally. There is a world of difference.

It is very easy to criticise in the absence of proof, less so to come up with constructive ideas.

At the end of the day the pharma companies are subject to market forces. If it don't work, you don't get paid. If there was some big secret you can bet your life some other company would exploit it to their own advantage.

Robin

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Do not go gentle into that good night. Rage, rage against the dying of the light.

Great post Ian I agree completely. Like you have noted there is a huge logical reason to disagree with the autoimmune model, not least of which is that autoimmune diseases with known triggers like rheumatic fever are self limiting- they go away. So in rheumatic fever there is a known antigen which causes molecular mimicry and it is self limiting. EXACTLY like EAE is.

Below is a copy of an abstract about EAE and MS ported over from pubmed. Please if you are interested in this get the whole citation and read it. EAE is a pure autoimmune disease it is created by lab researchers on purpose to be that because that's what they THINK MS is not becasue it matches MS on a cellular and molecular level. It doesn't match as more and more work indicates. It has completely different cytokines, interleukins and other immune factors than MS does, all summarized in this well referenced paper. Since EAE is autoimmune for certain because we create it by vaccinating the mice against their own myelin, and then they react to their own brains in an autoimmune way, if MS was us reacting to our own brains because of molecular mimicry or other epitope spreading of some kind it should be the same not grossly different as it is. It is that gross difference that results in EAE cures time and time again and dismal failure in MS when it gets to us. Copaxone cures EAE.

It's disconcerting how much of the 06 budget for research is focused on "let's knock out this part of the immune system..." I, too, am tired of the lack of progress and thank you for the opportuinity to share with one another the frustration of answers not being there. I am of course doing abx, but I wish it was well proven accepted and understood, not still in process.

The abstract is extremely understated: you'd never guess how technical and interesting this paper is based on the abstract. The references cited by the authors support the work well.

Ann Neurol. 2005 Dec;58(6):939-45. Related Articles, Links


Experimental allergic encephalomyelitis: A misleading model of multiple sclerosis.

Sriram S, Steiner I.

Department of Neurology Vanderbilt Medical Center, Nashville, TN.

Despite many years of intensive research, multiple sclerosis (MS) defies understanding and treatment remains suboptimal. The prevailing hypothesis is that MS is immune mediated and that experimental allergic encephalomyelitis (EAE) is a suitable model to elucidate pathogenesis and devise therapy. This review examines critically the validity that EAE is an adequate and useful animal model of MS and finds credible evidence lacking. EAE represents more a model of acute central nervous system inflammation than the counterpart of MS. We propose to reconsider the utilization of EAE, especially when this model is used to define therapy. This will also force us to examine MS without the restraints imposed by EAE, as to what it is, rather than what it looks like. Ann Neurol 2005;58:939-945.

PMID: 16315280 [PubMed - in process]

Robin,



What's abnormal about the immune system recognizing inflammation in the brain and reacting as such? That's what it is supposed to do! What I'm concerned about is that MS research has been pretty much focused on preventing certain aspects of the immune system from going after the myelin but spending little if any time on searching for the initial cause. It's only been recently that the docs have been able to come up with some clues that another mechanism is responsible for the myelin getting attacked in the first place.

For the past 15 years the drug companies have been promoting the CRAB's which try to interfere with the immune system in going after the myelin and have made billions of dollars in the process. They have little incentive to change the focus of their research and they are now turning to monoclonal antibodies to try and do the same thing.



I have.....stop spending millions and millions of dollars in trying to prove that your CRAB is better than the other guy's CRAB and start looking in other areas for the initial cause of MS. But that's not what drug companies do.....they aren't interested in research for the sake of health and scientific discovery. They develop and promote drugs that will make them billions. The real MS researchers are in the universities and medical centers but they lack the resources to quickly do this. MS is not a serious enough disease in the eyes of the public. Look what has happened in the treatment of AIDS in a relatively short period of time compared to 5 decades of MS research.



And that's pretty much why we don't' even know the cause of MS after all these years. The pharmas really don't give a damn about MS. Their work is centered on developing drugs and making a big profit and they have done that extremely well. The big difference between what they do and what other companies do is that their products have a very large control on people's health....and that is a very big difference!

Harry

Mrhodes40,



I couldn't agree with you more!!

Harry

How true Marie.

Roy

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The hurrier I go the behinder I get....

Inflammation is good, uncontrolled inflammation isn't. Cell mitosis is good, uncontrolled cell mitosis is cancer.



No? Arthritis, diabetes etc. etc. Ad nauseum.




That's the way of the world. It isn't pretty, it isn't fair, it isn't gonna change. Get used to it. However the 'real' MS researchers are also following the auto-immune theory, including the fabled Dr Sriram.



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Talking of the good Dr Sriram, his work on CPn is good. However he himself states that CPn may be responsible for MS in only a subset of patients. In the small clinical trial run for the ABX treatment they found no significant effect upon lesions but did find a positive benefit in respect of brain atrophy. However they themselves advise caution given the small size of the trial.

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Robin

_________________
Do not go gentle into that good night. Rage, rage against the dying of the light.

Dear all,

Thanks for all your responses - I just hope that the MS researchers are at least having this sort of debate. I don't know which theory is right but that's what they are paid to do.

I'm meeting up with Raven on Wednesday as he passes through London. At least something good has come out of getting this vile disease.

I think I've mentioned before that if this curse if ever erradicated we should all get together to celebrate.

Ian

Robin,



I fully realize that this is how the world "is" and that it is likely going to stay that way. For MS research, it's been "this" way for over 50 years and where are we? No known cause, no really effective treatments and not even remotely close to any kind of a cure!!

That's all that I'm saying, Robin, is that because of how it "is", is why MS research over the decades has produced the abysmal results that we have today. You mention that "the real" MS researchers are also following the auto-immune theory....well, they have been fixated on this path for a very long time and looking at their accomplishments so far indicates to me that if they stay the course, you and I will be having this same conversation 15 years from now!!

The only good news that I have seen in the past few years is that some docs like Behan , Barrett and Steinman have really questioned the old, standard theories and at least some researchers are looking at other possibilities. But unless something dramatic takes place soon, we won't be much farther ahead than we are today and that is not good news for MS patients.

But like Ian has just said, his posting has caused some interesting discussion!

Harry

Robin (and all),

Once again, you are picking my brain before I can get it out. You mentioned Dr. Sriram (Vanderbilt) and CpN.

Ok............to go one step farther (and this will cause an uproar, I'm sure), BUT............I have talked to them.

Charles Stratton may have some sort of antibiotic protocol that he alone advocates..........BUT...........it is not one that Sriram or Moses or Vanderbilt as an institution supports. I checked. So, there is actually no such thing as the "Vanderbilt protocol". There may be a Stratton protocol and an ongoing clinical trial at Vanderbilt with regard to antibiotic treatment in MS, but as Robin himself has noticed, Sriram himself isn't/doesn't support any type of "protocol". And they do not prescribe nor support an antibiotic regimen to MS patients outside of clinical trial.

And Robin is also correct on their (Moses and Sriram) recent findings with regard to CpN, etc.

Deb

OddDuck,

You had better ask Roy (Natgas) about this:



Roy is being treated by Ram Sriram, using the so called protocol, after dropping out of another trial which was doing him no good.

http://thisisms.com/modules.php?name=Forums&file=search&search_author=natgas

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Hi, Sarah!

I did one better than that. I talked to the researchers themselves at Vanderbilt.

If Roy is in an antibiotic clinical trial at Vandy, then yes, as I said above, he probably is taking an antibiotic regimen.

But...........is there a clinically academically supported "Vanderbilt protocol"? No. There isn't.

But, I'll write right now to them and mention Roy's name.

Deb