This Is MS Multiple Sclerosis Community: Knowledge & Support

I know nothing about LDN but this is the advice from one Canadian prof -

http://www.msanswers.ca/QuestionView.aspx?L=2&QID=57

his entire point in the article is that no studies have been done on LDN, so any benefit is theoretical and with no credibility. Which is why I find his following statement alternatingly amusing and infuriating:



And just how exactly does he know-- if there are no clinical trials-- that there are therapies that provide greater promise than naltrexone? By definition, you cannot compare something that has no basis for comparison.

Thereby, an obvious bias against LDN by the author is exposed, and his opinion is what it is-- an opinion, albeit relatively educated.

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Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

Arron,

The response from Dr. Murray is to be totally expected and is pretty much what you will see from any of the docs involved in MS research.

These people are in a habit of applying a double standard when it comes to their beliefs in MS medications. It's OK to state out of one side of his mouth that LDN has no credibility due to lack of any trials but then from the other side go on to state that there are many other drugs out there that are coming that are better than Naltrexone. (like you said..what proof exists from these "newcomers"?)

I'll give another classic example of this that involves the NMSS and their comments on Prokarin.

When the double blind trial on Prokarin was published, the NMSS was quick to claim that since this was a small trial of only 29 patients, the results were really insignificant. They further added that there was "proof" that histamine didn't work in MS and they quoted a trial done in the 80's. This trial was done at a Veteran's hospital in California, it consisted of 20 patients, was horribly designed and didn't have a control group!!!! Yet they were quoting it as "proof" to suite their own needs.

Remember it was the NMSS who got Dr. Allen Bowling to write that terribly inaccurate criticism of LDN a couple of years ago and he had to retract that article because it was so bad!

So, as long as these "experts" are around, we can continue to get this kind of comment.

Harry

Arron / Harry,

I am of the opposite view which is as follows:

LDN, Aimspro and ABX are all drugs / treatments that have not been tested in MS for safety or effectiveness. The CRAB drugs have been tested and although their efficacy is not great, it is known, and so is the safety profile.

I wouldn't have expected Prof Murray to say anything different, and Dr Coles in the UK has come out with the same views. Love them. or loathe them, neuros are professional doctors who have the patients best interest in hand. If you have a car you take it to the main dealer and he replaces whatever part is needed. Would you fit a part made by your neighbour in his garden because a few said it seemed to work OK?

I have seen reports of LDN being useful - but was does this mean? Slowing / stopping progression, reductions in EDSS, reduced disease activity? How many are taking it, how many are seeing benefits, are these benefits real / validated?

The same questions could be applied to ABX and Aimspro.

Neuros working in this field must have seen numerous examples of drugs etc which had not been tested and where great results were being reported. But I suspect that they all came to nothing.

I think there's a bit of a myth that neuros are pushing the CRAB drugs and show no interest in alternative treatments etc. I can see why those with partners diagnosed 20 or 30 years ago must feel completely let down by this specialism. But imagine if a neuro didn't suggest a licensed and tested drug and areed to prescibe an untested treatment. Imagine if that patient went down hill very quickly. How would the neuro defend himself / herself at the tribunal - "you let your patient take an untested drug, with its effectiveness based on hearsay".

So I support Prof Murray. And at the end of the decade when more effective, tested MS therapies are avialable, will continue to support this view, until drugs such as LDN have been properly tested and approved.

If LDN was so good - stopping progression, stopping relapses, then the CRAB manufacturers would be out of business. Unfortuantely, with this cruel disease people are putting their hope and money into drugs which have not been tested or approved. Bee Stings have been proven to be of no use, and I believe that LDN and Aimspro will have similar outcomes. In the case of LDN I'd like to be proven wrong and will give $100 to thisisms, if proved wrong.

Apologies if this comes across somewhat harsh but I met Dr Coles at Cambridge yesterday and you start to appreciate how complex this disease is and the work going on behind the scenes. I think it's an insult to these people that all you need is a pharmacist knocking out capsules of drugs which have not been test for efficacy or safety. And the real risk is that patients may be tempted off licenced and tested drugs and sometime down the line realise that they made a dreadful mistake, by not following the advice of their doctor.

So a different view - but that's the beauty of this site.

Ian

PS Unlike HarryZ I have no financial interest in any drugs companies. I understand that HARRYZARRON Inc have recently purchased the rights to distribute and sell LDN in the US and Europe.

Ian,

I think you may have missed the point that Arron and I were making. It wasn't that Dr. Murray's comment was wrong about the lack of clinical data for LDN. As a professional doctor in the field of MS, this is what is expected from him.

But quite often, when these docs make the comments that they do, they add in something that creates a double standard like Murray did about drugs coming down the pipe or the NMSS did about histamine. They use comparisons that go against what they have just said and that's what we are pointing out.

And yeah, I purchased the rights to sell LDN in Europe...and expect to lose $ 1.25 per prescription because it's out of patent.

Harry

Harry,

The dawn must be just breaking in Canada, yet the smell of profits (or losses) must have woken you up. Perhaps I'll forward you the $100 (US).

Some of the MS Societies such as the UK MS Society do fund trials that would not be funded by the drugs companies. If LDN appears to be offering benefit to a large number of patients, and can show that there is a logical basis for how it may address the disease / or parts of the disease cascade, then this may be the best route.

And I do think about you Harry. There was research paper published on the MSIF website yesterday concluding that EAE (the mouse model of MS) had made a substantial contribution to the research on this disease and had led to many of the current treatments. The thought of you reading that and suffering a heart attack prevented me from posting it. Although if LDN is to become a mainstream treatment it will have to prove its worth on that poor mouse first.

All the best

Ian

PS Arron must be quaking in his boots as I am 8 away from the 1,000 posts and the $1,000 prize money. Many thanks to the 220 members who PM'd me and thanked me for my sterling efforts.

Ian,



Cash only please.....sterling pound notes accepted as well



Yes, I know that various MS Societies around the world fund various kinds of research that the drug companies won't get involved. But I have never seen or heard of any kind of funding on something that would contradict the current work of the big four MS pharma companies that make billions off MS patients.

Why do you think that the NMSS in the US got Dr. Allen Bowling to write that scathing, inaccurate press release on LDN? It's all about the money, Ian

With thousands of MS patients reporting a benefit from LDN (at least as good as what the CRABs are giving) would it not seem reasonable for the NMSS to fund a pilot study on LDN? Heck, they did trials on bee stings and the hyperbaric chamber!



Although that poor mouse has made many sacrifices to MS research, I've yet to see a MS drug that has worked effectively on the mouse AND worked with humans. Most often it's just the opposite. My wife took part in a trial for a drug that stopped and reversed MS in that mouse...but ended up killing one of the trial patients!! She was on the placebo...whew!!

EAE is not the same as human MS...it's induced into the mouse and has a different mechanism. ...the main reason that drugs may work in the mouse but end up being useless for humans.

Take care.

Harry

I'll throw in an opinion or two, for what it's worth:

I can't speak for Aimspro, but for ABX and naltrexone there is actual considerable information on safety in humans, as these are drugs that have been used in people with a variety of conditions for a long period of time. Naltrexone has been tested in people at much higher doses than what people on low-dose regimens are taking. Have ABX and naltrexone been tested specifically in MS patients for either efficacy or safety? No. But I would argue that most drugs out there, for whatever related or unrelated condition, have not been specifically tested in MS patients for safety. For example, I would wager high blood pressure medication has not been tested for safety specifically in MS patients, but there are probably MS patients out there that do take high blood pressure medication.

What is interesting to me, is that a variety of compounds with a large amount of human data behind them, have been shown to be effective in the animal models for MS, yet these compounds don't quickly move into human MS trials, even with the available data on human safety already in place and anecdotal reports of efficacy in humans. If I didn't see that going on, I wouldn't get so irked. That is my big bone of contention with the research and I am building my EAE database to prove my point on this. Instead, mostly what has moved into human trials from animal studies are extremely expensive, patented, experimental medications that are hard to administer and for which the human safety profile is largely unknown. Building that safety profile wiill take years, as it does for any new medication, especially if a medication is in a whole new class. Time will tell for Tysabri, but I have looked at the long-term data on the existing CRABs, and weighting the side effects and costs against the dubious efficacy I have a hard time justifying that they are better than nothing, and I'd rather take my chances on something else that might work as well or hopefully even better, and doesn't comromise my quality of life right now as I live it. I'd like to be hopeful, and for me, there is no hope at all in CRABs. But that is my own personal experience and opinion, of course. I can't speak for anyone else.

I do agree with bromley, that neuros push the CRABs because they basically have to. I don't know how things work in Europe, but the U.S. is extremely sue-happy, so docs have to first offer what is FDA-approved. My neuro painstakingly documents in the medical records that he has given me information about taking CRABs. It is annoying, because I'm not interested in them, but I understand why he does it. I wish I could just sign an affidavit that I understand I am turning down FDA-approved treatment and could get on to a more productive office visit and explore some other treatment options. Since I don't have that option with him, I'll just design my own treatment. If I'm making a mistake, well, it's mine to make and I'd rather go out on an unproven track than accept the dismal status quo. I can't blame my doc. All the official, approved and annointed research out there has not given him much to offer MS patients, and that is not his fault.

Maybe something will break loose soon from the pharmaceutical research. I do hope that.

Lisa

good folks,

My only opposition to the doctor's comments was the implicit dismissive attitude towards LDN, again captured most beautifully in this quote:



If LDN has not been subject to appropriate trials, how can one possibly say another drug X has "more promise" than it does ? It's nonsensical, and is a quote that would only be made by a doctor who has *already concluded without the very clinical trials he bemoans the need for* that LDN is of marginal to no therapeutic value in MS.

I will defend him by saying that he may be making this statement out of his own beliefs as to what causes MS and what effective therapeutic options might be, and he does not see how LDN might affect those pathways. Nevertheless, medicine is far from an exact science and even if he can't see its relevance, to say something that is unproven has less promise than something else is preposterous.

Here's a somewhat weak, but visual example:

Is some random number greater than 44? Can't say. Neither can this neurologist say that some other medicine is "more promising" than LDN.

To be clear I'm not saying LDN is promising or not, just that one cannot say if they're basing their thinking on clinical trials.

_________________
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

I am not anti-LDN and hope that it is proved to be a useful therapy.

But I have been fortunate to have seen two of the UK's leading MS researchers / doctors, both incredibly caring, both incredibly dedicated to finding better treatments etc. I also respect them and trust them. I suppose at the end of the day, they are scientists, they are looking for strong evidence that a therapy works - through trials etc etc. And a good basis for the therapy to work. Neither gain any return from suggesting that patients start the licenced DMDs. But that is what they have to offer at this point in time.

Here is an artcle by Dr Coles about LDN in the UK. Just his opinion, but is strikes a chord with me.

http://www.mssociety.org.uk/search_clic ... eid=299558

Ian,




I don't think that you are anti-LDN and also understand why MS researchers would come out and say that since there isn't any clinical MS trials for LDN, they can't endorse it in any way.

But at the same time, Arron, myself and I'm sure others don't agree with the terminology some of these researchers use when making their statements. If they are going to criticize LDN or any other medication, they have to apply the same standards of analysis across the board. Dr. Murray simply did not do this and in my example, neither did the NMSS. One can't pick and choose certain aspects of criticism in order to prove one's point....you have to be consistent.

Harry

Ian, I know you're not anti-LDN. We're all anti-multiple sclerosis, and I know each and every one of us here is interested in finding good treatments, irrespective of where they come from and what they are.

The backdrop to Harry and my comments here is that there's a long, long history of very dismissive attitudes towards LDN in the medical field, and even now with a few more scientific results out that show LDN just might have benefit (even if it is merely symptom management), it just does not seem to abate. Good stuff, nevertheless.

_________________
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

Greetings to everybody.

I have to disagree with the statement that LDN has to prove itself against EAE. Why should it? EAE is an experimental model of MS in mice that reflects our current theory of what MS *might* be. But what if we are wrong and MS is not what we think it is? We are not mice, we are humans and we do not have EAE, we have MS. I can't accept the EAE agrument.

The fact that a big pharma will one day cure MS is quite oxymoron. Curing MS is like destroying a gold mine that produces billions of $. Why should they cure MS? Because we are suffering, maybe? Why should they help us if not for money? Why do you work? For helping the society? Would you work if you helped the society but were not paid for it? Unfortunately, in our world everything is done for money. I don't accept that it is something that has to do with our nature, though.

LDN has helped me much. It has stopped a terrible MS progression within a month. I feel that I am very young to pass the rest of my life walking with sticks. I am only 25, having MS since I was 17 and maybe 12. Ok. Perhaps it was not the LDN. But there are so many other patients out there reporting positive results. Is this luck? Even if it is luck, and since LDN is not dangerous (approved in 150mg doses), MSers should try it because it brings luck! Would anybody mind if by taking a pill that DOES NOT stop MS, MS stopped? Do you want "official" signatures that LDN stops MS? LDN is not approved for MS. Approved by whom? The FDA = big pharmas? I believe that the word "approved" has different meanings: For us: effective, for big pharmas: profitable.

If it is some day approved, does that mean that naltrexone gained its therapeutic properties because of the approval or it DID have these properties in the past? If it gained them by the approval, then why don't we approve more medicines for MS e.g aspirin, so that they become the cure for MS?

Sorry for the quite sarcastic tone of my words but all these questions haunt my thoughts from time to time. Since LDN is confirmed that it does no harm (actually it can be dangerous for some people. just like ANY other medicine) it is safe for (almost) anybody to try it. So let's not use the phrase "Not approved for MS" as equal to "Very dangerous and ineffective for MS, do not ever take it!".

And something else. Professors are specialists in a specific subject. When they are talking about something else, their opinion is not stronger and more valid than that of ANY other person.

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If God created MS, Devil would create Rebif to treat it!

Well I had a wonderful long post that somehow got lost when I submitted it. I'll try again.

I agree with stsolakos, that LDN is ready to go to human trials and does not need to get tested in EAE murine models. There is plenty of data on naltrexone in humans (at higher doses) and a large amount of anecdotal human evidence in treating MS. This is also the view expressed by Agrawal (2005) in about the only abstract about LDN and MS in PubMed; it was published in a journal called Med. Hypothesis.

I ran across a very interesting PubMed abstract, a case report of the use of LDN and alpha-lipoic acid (ALA) in pancreatic cancer, that resulted in a patient diagnosed as terminal surviving for several years into the present and who is back working. As a side note, both LDN and ALA have been used in MS patients. ALA has been shown to block EAE in animals. I post this seemingly off-topic cancer abstract to make a point: this pancreatic cancer case report of a novel, experimental treatment made it into a journal, got posted in PubMed, and reports their exciting and promising results. They are testing the regimen in more patients, and hopefully that outcome will be published soon. Pancreatic cancer is incredibly lethal, with survival only in weeks to months post diagnosis, so an improved outcome will be known quickly. If replicated in other patients, and then in other treatment centers, this treatment could quickly move to a full clinical trial.

My point is: why can't case reports on treatments in MS patients get published like this? I realize that MS is much more protracted than pancreatic cancer, that the prognosis is much more variable (pancreatic cancer having a pretty consistent dismal prognosis) and the outcome measures not as clearcut for MS, but still, there is a place for them and they get information out in the literature that cannot be dismissed, especially if reported by more than one doctor. My impression that reports of seemingly successful treatments in individual or small groups of MS patients get dismissed as flukes even before they get published, so they aren't published. This pancreatic cancer finding might be a fluke, too, if it isn't replicated, but the authors published it. If more treating doctors had published case reports with LDN, for example, Agrawal (2005) wouldn't have to make a case for a clinical LDN trial, the pressure would already be on. I think Anecdote's antibiotic story should be a published case report (maybe she'll post about this). Single case reports of successful treatments do not prove efficacy by themselves, but they stimulate further investigation, as the authors of this abstract note.

Here is the abstract if interested. Note the authors' statement about lack of toxicity of the ALA-LDN combination. Note that these drugs were administered intravenously as well, unfortunately doses are not given in the abstract. There are also plenty of studies on the use of ALA in the treatment of diabetic neuropathy, administered iv and/or orally. I don't know where ALA stands right now in terms of MS trials. - Lisa


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Integr Cancer Ther. 2006 Mar;5(1):83-9. Related Articles, Links


The long-term survival of a patient with pancreatic cancer with metastases to the liver after treatment with the intravenous alpha-lipoic acid/low-dose naltrexone protocol.

Berkson BM, Rubin DM, Berkson AJ.


Integrative Medical Center of New Mexico and New Mexico State University, Las Cruces.

The authors describe the long-term survival of a patient with pancreatic cancer without any toxic adverse effects. The treatment regimen includes the intravenous alpha-lipoic acid and low-dose naltrexone (ALA-N) protocol and a healthy lifestyle program. The patient was told by a reputable university oncology center in October 2002 that there was little hope for his survival. Today, January 2006, however, he is back at work, free from symptoms, and without appreciable progression of his malignancy. The integrative protocol described in this article may have the possibility of extending the life of a patient who would be customarily considered to be terminal. The authors believe that life scientists will one day develop a cure for metastatic pancreatic cancer, perhaps via gene therapy or another biological platform. But until such protocols come to market, the ALA-N protocol should be studied and considered, given its lack of toxicity at levels reported. Several other patients are on this treatment protocol and appear to be doing well at this time.

Publication Types:
Case Reports

PMID: 16484716 [PubMed - indexed for MEDLINE]
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LisaBee, I absolutely agree that published case reports might be helpful in spurring on other research in MS. If this website were required reading for researchers, we might accomplish the same thing!