Encouraging LDN Study on PubMed

[Quest11]

Here is a recently published LDN report on PubMed from a Pennsylvania State University study:

http://www.ncbi.nlm.nih.gov/pubmed/21256121

Admittedly, the study was conducted on the EAE mouse model, but the conclusions are very encouraging and relate to treatment with either OGF or LDN (which produces high endogenous OGF levels):

1. Halted EAE disease progression
2. Reversed neurological deficits, and
3. Prevented onset of dysfunction across considerable span of time.

This is very encouraging news to those of us who use LDN.

I only use 2.0mg LDN nightly right now because of bladder related spasticity problems, but hope to work up to 4.5mg nightly over time. This article encourages me to stick-it-out.

I haven't seen this reported elsewhere, and wanted to share.

[mirey45]

Thank you for posting this. My DW has been on LDN 3.0 for a little over a year for her MS Dementia, so far it's working really well. She will be moving up to 4.5 at her Dr's suggestion soon. I hope it helps her even more, good luck on your's.

[Louise]

Thank you for posting this. I have been doing research all week on LDN and am considering asking my neuro about it for me. I'm now on Copaxone. After 7 years I don't think it is working any more and I feel myself progressing.

How long have you been on LDN? Can you take Copaxone and LDN together?

[Quest11]

How long have you been on LDN? Can you take Copaxone and LDN together?

I have only been at the 2.0mg level for a few days. In the past, I had taken LDN at the 4.5mg level for about a year, but had given it up because of a bladder spasticity problem (constant leakage). I am determined to make it work this time.

I have been using Copaxone for 12 years now. I have progressed over that time, but I never understood that Copaxone would completely stop progression. The two can definitely be taken simultaneously. I consider Copaxone and LDN to be the most important elements of a neuroprotection regimen (the third being exercise...).

Good luck,

--Tracy

[Tapdancer]

Thanks so much for the link. PubMed is the one site I trust. Research and peer reviews. I know for sure that LDN is working for me. I was on either Avonex or Betaseron for fourteen years and quit two years ago to try LDN. Never regretted it. 4.5 mg. caused spasticity in feet and legs in my sleep, so I cut back to 3.5. If anything, it has helped with the bladder issues. I am having far fewer UTIs. I feel so fortunate that, having been dx 23 years ago, I am still able to work, walk the track, do yoga, and I am almost Medicare age. I still experience lots of fatigue. MS, after all. I think the best thing I get from LDN is an increased sense of well being. No more antidepressants Not in two years. I highly recommend giving LDN a try.

[knuckle]

This is Dr. Ian Zagon's study from a few years ago that was funded through a $40,000 NMSS grant.

Upon achieving these results, he submitted two grant proposals to NMSS for further research study. NMSS didn't respond to either (I've communicated directly with Dr. Zagon about this as well as NMSS - Dr. Patricia O'Looney / VP Research, and others).

I'm really pleased Dr. Zagon found LDN safe for mice. After all, the 10s of 1000s of people who have been taking LDN for MS and other autoimmune conditions were probably very concerned LDN was safe for mice.

In my communications with NMSS, it became clear NMSS has no interest in supporting any further LDN research as, while very effective with mice, LDN evidently has no future with humans.

[mirey45]

I have to sound in on this and this is just my opinion. It's clearly all about the money. Copaxone just had another price jump and there will NEVER be a generic available. LDN 4.5 mg is less then $20.00 a month. My wife just got on a medicare drug plan and it will cover her LDN, I just have to file a claim for it. Total cost to us for something that is helping her form of MS less then $100 a year.

I just want to add something I noticed over the last few years concerning Dr's office visits. We went to see a Neuro here in S. Il back in Oct. of 09, this woman is considered an "expert" in MS. When we entered her office everywhere yo looked was "advertising" for Copaxone and Avonex, ( I.E. pens, posters, mugs, clipboards ) the first words from the Dr. was " we have to get you on a med, I don't care which one and I don't even know if it will help but we have to get you on one.". When we asked about LDN she would not even talk about it.

We since found another Dr. who wrote LDN for her, and have moved on to another Dr in Chicago, (easier to get to him then the first Dr. who was in Springfield), upon entering the new Dr's office there was NOTHING promoting Copaxone, Avonex or any of the other drugs made for MS. He was very willing to continue her on LDN and even suggested moving up to 4.5.

Makes you want to stop and think which one is really looking out for the patient.

[knuckle]

Couldn't agree more mirey45 and think this extends to the NMSS.

If you ask a neuro if you should take vitamin D and exercise for your MS they will more than likely agree. Ask why. They'll probably say vitamin D and exercise help your immune system. Ask why. They'll probably say something about endorphins.

What does LDN do? Tricks your body into producing more endorphins.

Totally non-toxic. Cheap. A pill.

But instead, the neuro trained by big pharma gives you some marketing brochures with all these happy people taking their drug. Ever notice how much fun people seem to be having taking Tysabri, Copaxone, Avonex? They look like they're having a blast. Running, biking, rock-climbing...

Instead, the neuro says oh no, no LDN, here are some happy-face brochures, pick one. No, why try something cheap and non-toxic first when I can prescribe something really expensive and potentially toxic and requires painful injections and could make you feel like crap and if you're lucky, and you take this drug over the next 10 years, may slow disease progression 30-35%, but we really have no idea.

But don't worry if the drug doesn't seem to be working as the studies indicated over 15 years ago, where even the placebo was 25% effective, with no idea if it works better on men or women, on brain versus spinal lesions, we'll offer you a new and improved MS drug.

The new drug is so much better, it's more expensive and has killed some people, may cause cancer, but we really love it. Here's a new brochure, look how happy these people look, the drug must be great.

You've got good health insurance right? There's nothing better than a MS patient with good health insurance.

After all, I'm you're neuro and I know everything about MS and you are just someone who actually has the disease. How dare you spend time on the Internet researching LDN and come here asking me about it.

After all, I'm you're neuro and I know everything about these MS drugs. In fact, (insert drug company here) pays me to lecture about their drug, and go to important conferences (insert luxury resort in sunny climate here).

No, better not try LDN, here, let me give this brochure. It comes with a lovely tote bag.

[NotMadCow]

Totally non-toxic. Cheap. A pill.


You've got good health insurance right? There's nothing better than a MS patient with good health insurance.

This statement is totally true and totally sick.

Don't need a tote bag. Ironically, I hung on to a tote bag that I had won for raising some money in an MS Readathon that I participated in when I was a kid.

[opiegirl]

After all, I'm you're neuro and I know everything about MS and you are just someone who actually has the disease. How dare you spend time on the Internet researching LDN and come here asking me about it.

Thanks for your insight Knuckle, I go next week to the neuro/MS specialist and plan on asking about LDN. Hoping he has an open mind.

I had a good chuckle reading about the happy faced people on the brochures. That's what he gave me last visit, told me to look through them and we'd talk next appt.

My plan is if he won't consider LDN, I guess I am going to call the compounding pharmacy in town and find out if any Dr. prescribes LDN and make an appt. with them.

[mirey45]

Knuckle, try not to hold anything back, let it all out. Very good response. I love your passion about this "drug" problem over LDN.

As I see it the one point most Neuro's use to "hide" behind when it comes to LDN is that it's not FDA approved for MS treatment. First off that's BULL**** FDA encourages doctors to, what we in the pharmacy business used to call "cross- write" a drug for a purpose other then what it was intended. If the Dr and/or patient feel it will or might help.

Fine then let's all try, us belivers in this use of LDN to "nip" this in the bud. We should start to write or contact our congressperson and Senator to put pressure on LDN approval by the FDA. It totally makes no sense that they are going to Fast-track a drug like Compath from England ( where more then 800 doctors write LDN ) with all the problems it has and ignore the outcries from people in the US for LDN.

Give all of us the option in our treatments. If just 5,000 people on all the MS approved drugs were to switch to LDN the cost savings in out-of-pocket, Insurance and Medicare would amount to over 35 MILLION a year.

I talk up this form of treatment my wife is on every chance I get. I have letters in to some members of the House and Senate, I will fight like he** to get this OKed just so others can get better relief from this.

Quality of life is what's important here, with LDN it's so much better then all that other stuff.

[knuckle]

mirey45,

You should consider contacting the LDN Research Trust in the UK as they are conducting a "voices" testimonial project with LDN users worldwide (for a variety of immune-related conditions).

They set-up a Skype call with you, ask about 10 questions, it is edited and will be burned to CDs for distribution, many for doctors. They also have a documentary film maker lined-up to start soon.

Go to: www.LDNaware.org and on the Home page, click on the UK flag and LDN Research Trust is the first website listed, along with all the UK multiple sclerosis charities.

[Redwings]

We should start to write or contact our congressperson and Senator to put pressure on LDN approval by the FDA. It totally makes no sense that they are going to Fast-track a drug like Compath from England ( where more then 800 doctors write LDN ) with all the problems it has and ignore the outcries from people in the US for LDN.

The FDA doesn't approve drugs or drug uses through "pressure" or "outcries." It approves drugs after a sponsor (usually the manufacturer) conducts extensive research following specific study designs and protocols, pays significant amounts of money to do it and then requests approval of a drug for a specific purpose. (Research fraud is outside the scope of this discussion.) An example of this is Novantrone and Cytoxan. The maker of Novantrone funded expensive testing and requested approval of Novantrone for MS, which was granted. The maker of Cytoxan didn't do specific testing or request approval, so Cytoxan isn't FDA approved for MS. That doesn't stop it from being used off-label.

LDN isn't FDA approved for MS because no sponsor has come forward with the money and necessary research. (That doesn't mean that there isn't research for LDN. But apparently the necessary testing procedures haven't been followed.) After a drug has gone generic (which naltrexone has), there's no financial incentive for anyone to go to the expense necessary for testing because there's no way to make back the huge amounts of money invested. That's why LDN isn't FDA approved for MS. "Pressure" from consumer groups or elected representatives won't change that. It's far, far beyond legislators' jobs to be dabbling with medical issues they aren't qualified to be dabbling in (although that hasn't stopped them in other areas ).

Fast-tracking is for drugs that aren't FDA approved. Fast-tracking isn't even an issue here because naltrexone is already FDA approved and available off-label. Doctors not wanting to Rx it off-label, and insurance companies not wanting to pay for it off-label, is a different issue. If there's any "pressure" to be applied, it should be in educating doctors and medical insurers about alternate uses for a medication that's already been proved safe and effective.

[Redwings]

Just want to clarify a point at the end of my last post, where I misspoke. I did not mean to say that fast-tracking was for drugs that aren't FDA-approved). What I did mean to say instead was that fast-tracking is for name-brand/nongeneric drugs with a sponsor, not for generics without. And because naltrexone is a generic that's already available off-label, fast-tracking isn't an issue.

Please excuse the error.

[wkikta]

Yes, the Penn State Study showed effectiveness for treating EAE, unfortunately MS is not EAE, just a Mouse Model that mimics it, used for very early study. The Neuro's concern with LDN is that Patients might lean on it and not do any treatment for the Disease. LDN is a great 'Feel Good' Drug, boosts Endorphins, probably doesn't do anything to slow the progression of MS. And, only about 50% see positive effects from the LDN.