Who here takes only LDN and NO other MS drugs? PLEASE post and let me know....

[misslux]

Sigh, no. You are twisting my words.

The onus is on the proponents who claim that LDN

1. works as a DMT
2. stops or slows progression

[misslux]

Hit send to fast.

Also, I'm not for or against LDN. I take it too. I would just like to see more comprehensive data like I mentioned a few times. It doesn't even have to be a clinical trial.

[danintheden]

Both sides of this discussion have good points.
When a disease like MS affects each of us who has it so differently, it is not unreasonable to expect that treatments for it would also have varying results.

Even with a drug like copaxone that has some positive results in studies of its effectivemess in thwarting relapses, they are not exactly world-shaking, and not everyone can handle its baggage.

Anecdotal evidence? From the clear-headed folks who post here, I'll take it. LDN is affordable and worth trying long enough to make one's own decision about its worth. If it doesn't work for you, quit, and look for an alternative.

This disease is all about persistence and appreciating small successes.

[knuckle]

I've always been disappointed in the NMSS's aggressive lack of interest towards LDN and think it's a real disservice to the MS community.

Some people have very lofty expectations of LDN - like it will halt or reverse disease progression - and that's unfortunate. Realistically, all LDN has to be is 30-40% effective in preventing exacerbations to be preferable to the CRABs as a first line treatment upon disease diagnosis. Just think of the costs and toxic side effects that can be avoided, especially with the interferon drugs.

Every day 200 people receive the devastating news from a neurologist that they have MS and are given a prescription that is their first stop on an endless train of expensive, toxic drugs, lab tests, MRIs, doctor's visits...Why wouldn't you want to try the least expensive, least toxic, a simple pill that actually makes you feel a bit better, as a first treatment? It's not like your MS is going to explode over six months. Why must people (like me) have work there way through all these big pharma drugs, accumulate all this disability, before you try LDN?

If there are any newly diagnosed reading this thread here's a piece of advice from a guy who was diagnosed at age 32 and is now 56, did almost all the MS drugs one after another as each successively failed to slow progression from a limp to a walker to a powerchair.

I wish somebody had told me about LDN when I was 32 and I'd given it a try for 6-9 months.

[J-Bo]

I've been following this thread with great interest. I'm a PPMSer who is currently taking Ampyra and Tecfidera, neither of which have been proven to help with this type of MS, nor do I have any evidence yet that either of them is doing anything for me. But there's not much hope offered to people with PPMS, so what else is there to do but try?

Now that I've read a bit here and elsewhere about LDN, I'm wondering what the downside to trying it could be. Low cost, minimal side effects, and as far as I can tell, few interactions with other drugs--sounds like a very low-risk option. Am I wrong in assuming that it's OK to take it while alongside of the Tec and Ampyra?

[Tapdancer]

J-Bo, I don't know about Ampyra, but my neuro gave me the green light to take LDN with Tecfidera. I have to agree with your assessment about the limited downside of taking LDN, especially given the considerable side effects of the big gun drugs. I agree with Knuckle that I would love to have had the option long ago.....like 1988. I so desperately wanted to take a pill, a placebo even, so I went with evening primrose.
Such a pretty name. Just popping the pill into my mouth would ease the fear of MS. I do profoundly believe in the power of the placebo effect. And LDN is far more than a placebo for me. Wishing you well as you take the LDN leap.

[Myoak]

LDN is not a disease modifying drug approved by the FDA for treatment of MS, so ewizabeth is right about that. But Lilly is also right that there are patients who are using LDN as such to treat their own MS. Many do so based on the work of a Harvard-educated doctor, Dr. Bihari and a huge number of other doctors, both researchers and practitioners.

Ewizabeth said LDN isn’t a disease modifying drug and went on to say it doesn’t work like Bihari’s followers say but provided no source to support that position. Lilly said, “Dr Bihari did find that LDN does stop progression of MS (shown on MRI scans).” Misslux asked for the source for her claim. I provided that source by directing her to a hour and 20 minute video of Bihari himself speaking about his decades use of LDN in hundreds of patients. Unfortunately, misslux expressed no interest in “scouring through a bunch of Youtube videos.”

“Low Dose Naltrexone (LDN) Pioneer Dr. Bernard Bihari Talks” is only one video. It is direct and personal testimony from Bihari himself. I would question the methods of any researcher who didn’t have time to go to a primary source for information.

For me, personal testimony provides some of the most convincing proof about any treatment for MS. We all appreciate those who share their personal experience. In a way, isn’t that one of the most practical and meaningful clinical tests of all?

For those who want scientific discussion, begin with the link knuckle provided. When you understand that article you will begin to understand the scientific explanation for the mechanism of LDN; how it works. But comprehension takes time and effort. Understanding science doesn’t come by being spoon-feed; it comes by the hard work of digging, discovering, and digesting.

Misslux was it you or someone else who mentioned they had been a patient of Dr. Turel? If this is the same Dr. Turel from Hershey Medical Center then he would have been a colleague of Dr. Zagon and McLaughlin who first published about LDN in 1985. Z and M have since done dozens of studies involving LDN.

Zagon and McLaughlin first provided the science; Bihari first provided the practice involving LDN.

Misslux, to borrow a line from OZ… you must start at the beginning. There are no short-cuts if you want to understand how LDN works from a scientific point of view. For the science start with Zagon and McLaughlin. For the practical application start with Bihari.


Many thanks to Lilly for starting the discussion and for the civility everyone has shown. Blessings to each poster and every reader. We all appreciate how difficult treatment decisions are. Personal testimonies here are extremely helpful.

[misslux]

Asking for a comprehensive data set versus watching a presentation is hardly being "spoon fed".

I'm not even really on a "side". Frankly, it really does not matter to me personally whether it stops progression. If it does great. If not, life goes on.

And no, I was not a patient of Dr. Turel.

[misslux]

I've been following this thread with great interest. I'm a PPMSer who is currently taking Ampyra and Tecfidera, neither of which have been proven to help with this type of MS, nor do I have any evidence yet that either of them is doing anything for me. But there's not much hope offered to people with PPMS, so what else is there to do but try?

I take 4-aminopyridine which has a similar mechanism of action to Ampyra. It is okay to take both.

Ampyra was shown to help with walking speed and secondary benefits in all four types of MS in their clinical trials. Do you notice a difference if you have a late dose? I can totally notice a difference!

[knuckle]

For J-Bo and any other PPMSers...

A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis.

http://www.ncbi.nlm.nih.gov/pubmed/18728058

Abstract

A sixth month phase II multicenter-pilot trial with a low dose of the opiate antagonist Naltrexone (LDN) has been carried out in 40 patients with primary progressive multiple sclerosis (PPMS). The primary end points were safety and tolerability. Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life. Clinical and biochemical evaluations were serially performed. Protein concentration of beta-endorphins (BE) and mRNA levels and allelic variants of the mu-opiod receptor gene (OPRM1) were analyzed. Five dropouts and two major adverse events occurred. The remaining adverse events did not interfere with daily living. Neurological disability progressed in only one patient. A significant reduction of spasticity was measured at the end of the trial. BE concentration increased during the trial, but no association was found between OPRM1 variants and improvement of spasticity. Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS.

[knuckle]

I think it worth noting that Tecfidera (dimethyl fumarate) is considered an "immunomodulator" and that LDN also "modulates" the immune system by increasing Endorphin production.

Dimethyl Fumarate is also used for Psoriasis (Fumaderm), is being researched for other autoimmune diseases, like Rheumatoid Arthritis, and some cancers.

So is LDN. Clinical trials have shown efficacy with Crohn's Disease and, along with Alpha Lipoic Acid, shown remarkable results treating cancers.

It's quite possible that Tecfidera and LDN work in similar immunomodulatory ways - by regulating Tcell proliferation. LDN does it by boosting Endorphins and Tecfidera by correcting a Fumaric Acid deficiency.

The fact that both drugs exhibit efficacy across the same diseases is not just a coincidence.

[zjac020]

You may want to also look into Psorex. its a single methyl fumerate ester rather than a double like Tecfidera. It can be bought as a supplement. Many believe it provides almost the same benefits.

Dont expect Biogen Idec to point that out to you in clinical trials. Remember. ..big farma only makes money by selling new treatments. Look into how much Tecfidera costs now and what it cost before when it was used for psoriasis....

[Myoak]

Misslux, You are to be commended for desiring comprehensive data about LDN. I wish more MSers would demand the same. You are on the right track.

But absent data from large-scale Phase 3 trials we are left with assembling data from smaller trials, testimony from doctors who prescribe LDN, patients who use LDN, and researchers who study LDN. Together this group presents a compelling volume of evidence.

A large Phase 3 trial may track 1000 patients for 2 years. If the results are good often another large trial is done to confirm it after which it may be submitted to the FDA and the drug used may get approval.

LDN has had multiple thousands of MSers using it for many, many years. One of the limited studies we do have was published back in 2005: http://hauge.imaker.no/data/f/0/05/8...DNhypotese.pdf

I quote, “over 70,000 LDN capsules have been dispensed between Jan-Aug 2004 from just one pharmacy (Dr.Henry Lenz Pharm D, personal communication), an international petition for a clinical trial of LDN in MS has over 5500 signatories (www.thepetitionsite.com)"...(my note,12,025 signatures when closed)

"Furthermore, MS patients who had been going downhill with conventional therapy have reported their experiences with LDN in five newspaper reports in the British and American press, as well as have organized and participated in a self reported web based survey of 267 LDN users from 16 countries."

"This patient organized survey, reports an average relapse rate of only 0.2/year in patients with MS. While the patient self-reported survey cannot be equated with a physician organized clinical trial, it begs the question as to why are there no clinicians investigating this.”

The great mystery about LDN it is how there can be so little investigational interest from Pharma, disease societies, and the NIH. Only one scenario makes sense to me. LDN costs my brother $53 for 3 months; Tysabri costs my wife $14,101.95 for 3 months so I understand why Pharma isn’t going to fund a study of LDN. The only explanation plausible to me for why disease societies and the NIH don’t fund comprehensive studies for LDN in MS is that Pharma prefers they don’t. No other explanation makes sense.

Because if any of those three entities truly believed LDN was not safe in MS or was not effective, Pharma would fund studies to prove it, as would disease societies and the NIH, on behalf of patients, of course. Isn’t it worth knowing if thousands of MSers are using something which doesn’t work or is not safe? Yet, no funding for a comprehensive trial! Even by disease societies who raise money for the benefit of sufferers!

Misslux, many, many MSers are interested in the same thing as you, comprehensive data. But don’t hold your breath waiting for it. You are up against billions of dollars interested in you not getting that data from large-scale studies. That’s why we have to compile all the information we can from small studies, LDN doctors, LDN patients, and LDN researchers.

Your voice is very important misslux, thank you for speaking up!

[knuckle]

These people certainly see LDN as a viable product.

TNI Biotech expects to sell a billion doses of LDN this year in Africa and Asia.


TNI BioTech, Inc. Announces Proposed Spin-Off of Cytocom, Inc.
Spin-off Would Allow Cytocom to Operate as a Separate Biotechnology Company Focused on Development of LDN and MENK Immunotherapy Products
TNI BioTech to Continue its Focus on International Manufacturing, Marketing and Distribution of LDN and MENK Immunotherapies

ORLANDO, Fla., May 1, 2014 /PRNewswire/ -- TNI BioTech, Inc. (TNIB) ("TNIB" or the "Company"), a biopharmaceutical company focused on the development, marketing and distribution of opioid-related immunotherapies, announced that its board of directors has approved a plan to spin off its wholly-owned subsidiary, Cytocom, Inc. ("Cytocom"), an entity established to operate TNIB's drug development business.

Following the spin-off, Cytocom will initially focus on developing low dose naltrexone ("LDN") and methionine-enkephalin ("MENK") (the "Drug Development Business"). TNIB will continue to retain rights to certain assets, and will focus on manufacturing, distribution and marketing of these LDN and MENK therapies for the treatment of both humans and animals in certain territories (the "Marketing and Distribution Business").

[knuckle]

`

"You may want to also look into Psorex'

No kidding, $30 a bottle, plain old Fumaric Acid used by dermatologists to treat Psoriasis.

If Dimethyl Fumarate, otherwise known as "Fumaric Acid Esters" corrects a Fumaric Acid deficiency in the citric acid cycle, why wouldn't this stuff too?

I've also thought Malic Acid would be beneficial as well. Malic Acid is good for skin and oral health and consequently is an ingredient often found in toothpaste and cosmetics.

Apple cider vinegar which is high in malic acid content is a folk remedy for MS. People use it to treat Psoriasis too.

I think there may be a connection between the citric acid cycle not processing vitamin D correctly, or possibly not getting enough, that the citric acid cycle breaks down and the immune system fails to regulate Tcell balance. Adding Dimetyl Fumarate, or Fumaric Acid, maybe just Malic Acid, helps correct the problem - along with a vitamin D supplement.

Google: dimethyl fumarate cancer

Dimethylfumarate impairs melanoma growth and metastasis.

http://www.ncbi.nlm.nih.gov/pubmed/17178886

Now that's even more interesting, so does LDN.

I've been taking about 1800mg Malic Acid daily along with an Apple Cider Vinegar supplement every day for a couple of years now.