This Is MS Multiple Sclerosis Knowledge & Support Community

After previously discrediting the treatment,they are now calling for studies.

http://www.nationalmssociety.org/Clinup-Naltrexone.asp
National MS Society | Treatments

Dr. Agrawal proposed that LDN reduces disease activity in MS by reducing the destruction of oligodendrocytes, the cells that manufacture myelin.

Hopefully studies are on the way soon to prove or disprove.

Flacky,

flakyteabag wrote:After previously discrediting the treatment,they are now calling for studies.

Don't you just like how the NMSS seems to put their foot in their mouth when it comes to anything outside the conservative envelop of MS medications.

When they got Dr. Allan Bowling to write their first response about LDN last fall, he not only stated they required clinical trials for proof but went on to unjustifiably trash the drug. Now a medical doctor, who appears to have more credentials than Dr. Bowling, has written a paper outlining how LDN may possibly work. There is no way that Dr. Bowling is going to trash this doctor (not acceptable in the world of doctor relations) so now he writes another article, back-tracking from his original "trash job".

This kind of "tap dancing" by the NMSS isn't new and is just another example of how this group looks after the best interests of MS patients.

Harry

it absolutely boggles my mind that no studies have been done.

i've been reading an ldn group user forum for past 3 months.also
a 2 page discussion of ldn from old braintalk harvard forum.its 3 years old but still relevant
http://neuro-mancer.mgh.harvard.edu/ubb ... 07271.html
On LDN 2 yrs now and my progression has stopped. - BrainTalk Communities - Neurology Support Groups
its obvious from reading various posts that some folks have shown significant improvement on ldn

a study to assess its benefits would seem to be in the no brainer category

small study due in june
http://www.emediawire.com/releases/2005/4/emw230084.htm
A New Version of an Old Drug Successfully Treats Deadly Diseases Like HIV/AIDS, Cancer and MS in an Entirely New Way, by Strengthening the Immune System

flakyteabag wrote:it absolutely boggles my mind that no studies have been done.

It shouldn't.....and there is one reason only...nobody can make any money off of LDN at the current time. This drug also goes against all the standard theories about MS and you can imagine what would happen if LDN became the drug of choice.....a lot of people would be losing a lot of money!!!! Very sad but very true!!

Harry

I'd really like to know what you are referring to in this statement Harry

This drug also goes against all the standard theories about MS and you can imagine what would happen if LDN became the drug of choice

I don't know LDN or its suspected mechanism of action, and how it goes against the theories. I'm sure I could read, read,.....and more read to learn myself but Harry.........asking you is so much easier

Thanks Harry


Treez

Treez,

Most MS researchers state that MS is an auto-immune disease (never been scientifically proven). They feel that the immune system is over-active and mistakingly attacks the myelin and thus the damage. The current MS drugs alter and/or reduce the effect of the immune system in an attempt to prevent it from doing this attacking.

LDN, on the other hand, regulates the immune system and allows it to function as it was designed to do. In fact, in Dr. Bowling's initial press release on behalf of the NMSS, he came out and stated that LDN was no good because it had a tendency to "stimulate" and not suppress the immune system as the approved drugs do.

Getting back to the immune system attacking the myelin.....last year Drs. Prineas and Barrett of Australia did an autopsy on a 17 year old girl who died suddenly from a massage MS attack. They found no evidence of any immune system activity in the lesions on her brain. The big question that comes out of that is what caused the lesions if it wasn't the immune system.

I believe that there is some unknown mechanism that originally causes damage to the myelin. When the myelin becomes damaged, the immune system becomes alarmed and thus goes after the myelin further. Of course this is pure speculation but to this day, nobody knows what causes MS.

So, if LDN proves to be effective, then the CRAB drugs look pretty useless and that is going to cost a lot of people a lot of money...so you get the picture.

Harry

I forgot about the girl and autopsy. I had read that some time back. I know all about the MS theories, it was the LDN I wasn't educated on.

Small part of my theory........Legions as seen on MRI(after the fact), neural damage......all collateral damage. The inflammatory response of our bodies(everyone not just MS'ers) is know to over react or over compensate. I have posts somewhere here explaining my theory of this further.

Briefly, If you have an injury that results in tissue damage, or destruction. over several hours, even days, the "redness" (inflammation) increases in response to the original injury. For years doctors have recommended ice on the injury to limit inflammation and swelling.

I'll look for my other posts

Treez

Oooops, I duplicated your post...Can I delete it?...Sorry.

I had to re-register because of a ISP change and got a little confused...MS brain fart, I guess.

BTW, there is a LDN trial coming up in the next month or so, and that may have something to do with this new blurb from the NMSS.

Ya think they saw the light

Cheers,
Sally

Edited to say: OK I deleted it.

HarryZ wrote:

flakyteabag wrote:it absolutely boggles my mind that no studies have been done.

It shouldn't.....and there is one reason only...nobody can make any money off of LDN at the current time. This drug also goes against all the standard theories about MS and you can imagine what would happen if LDN became the drug of choice.....a lot of people would be losing a lot of money!!!! Very sad but very true!!

Harry

True, but isn't there money to be made on trials? Does anyone know?Imagine if the trials drag on for years.

True, but isn't there money to be made on trials? Does anyone know?Imagine if the trials drag on for years.

Trials are terribly expensive propositions and the money has to come from someone....and that is a drug company who thinks there is a chance of getting a decent return on their investment. And so far, that's why we haven't seen any large LDN trials....and likely won't until somebody can find a big chunk of money.

Harry

HarryZ wrote:Trials are terribly expensive propositions and the money has to come from someone....and that is a drug company who thinks there is a chance of getting a decent return on their investment. And so far, that's why we haven't seen any large LDN trials....and likely won't until somebody can find a big chunk of money.
Harry

Why? With modern computers the data compilation should not be too hard. With a cheap drug like LDN that the patient/insurance pays for there is no extra expense there. The doctor visit is already being paid for by insurance. In fact, for cheap drugs that look promising, the insurance companies (perhaps a consortium) should be eager to pitch in a little, and they could get a huge return on their investment in terms of reduced future drug expenses. Imagine them not having to pay for Avonex, Betaseron, Copaxone, and Rebif anymore because a cheap oral drug works for most people. They could justifiably remove the expensive drugs from their formularies. And imagine the huge public goodwill that would result from finding an inexpensive solution to MS.

I don't think you have a great understanding of what is involved in clinical trials. The actual cost of the drug is the least of the expense worries. It's the entire structure of the trial that is the big cost. They must be carefully designed and approved, patients must be solicited, facilities and doctors obtained to conduct the trials, thousands of MRIs completed and analyzed and the data tabulated. And the trials are run over a minimum two year period and those are the Phase III trials after a drug has proven to be safe in Phase I and II trials. The costs run into the millions and then there is the additional cost for FDA approval which is required if you are going to advertise the fact that a particular drug has been approved for MS. And with the current patent situation with LDN, any other drug company could come along after all these millions have been spent by one company and this other company could manufacture the LDN and begin selling it without spending one cent on the research.....not a very attractive situation for any drug company!!!

Sure the insurance companies would be happy to eventually pay for LDN vs any of the CRABs but they won't be saving anything until LDN is properly approved for MS.

As for goodwill for anyone helping to pay for the trial costs....unfortunately that rarely if ever happens in today's world of medical drugs.

Harry

HarryZ wrote:I don't think you have a great understanding of what is involved in clinical trials.

Little to none. Got me there.

HarryZ wrote:The actual cost of the drug is the least of the expense worries. It's the entire structure of the trial that is the big cost. They must be carefully designed and approved, patients must be solicited, facilities and doctors obtained to conduct the trials, thousands of MRIs completed and analyzed and the data tabulated. And the trials are run over a minimum two year period and those are the Phase III trials after a drug has proven to be safe in Phase I and II trials. The costs run into the millions and then there is the additional cost for FDA approval which is required if you are going to advertise the fact that a particular drug has been approved for MS. And with the current patent situation with LDN, any other drug company could come along after all these millions have been spent by one company and this other company could manufacture the LDN and begin selling it without spending one cent on the research.....not a very attractive situation for any drug company!!!

Sure the insurance companies would be happy to eventually pay for LDN vs any of the CRABs but they won't be saving anything until LDN is properly approved for MS.

As for goodwill for anyone helping to pay for the trial costs....unfortunately that rarely if ever happens in today's world of medical drugs.

MRIs - again covered by insurance, one per year.
Doctors - again covered by insurance. Maybe a few extra minutes to put the data in the study place. A quick review by someone later could see whether impressive results were being seen making it worth further analysis.

Surely enough trials have been undertaken that there is a standard method now. Or would that be patented too and thus require redesign for each trial? Sounds like the open-software movement needs to be exported to the medical field. Or some framework for those more-informed to work together to accomplish something. Sounds like the entire structure of the trial is the problem.

Batpere,

Insurance companies don't pay for clinical trials and hospitals or clinics don't pay their docs to conduct these trials. And the MRI costs aren't covered either. That must be paid for by the drug company who is testing the particular drug. That's why these trials cost millions!!

And study designs....that is another story as well. They are VERY complex and there is a huge amount of work that goes into them. They don't come on a CD, all ready to go

I realize that clinical trials may appear to be simple in nature but I can assure you they are anything but!

Harry

A quick trial should be put together to determine if a more detailed trial is needed. The quick trial would not use MRIs as a measurement device. They could go by the disability scale or self-reporting or doctor's analysis. If it shows that LDN is beneficial, then they might be able to get the NMSS, NIH, and other governmental or international institutes involved to fund it. I would think insurance companies would have interest since it would save them millions in prescription and treatment costs.