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Question: low dose naltrexone?

Submitted by art on Mon, 2003-10-06 06:53.

I am reading a lot lately about low dose naltrexone and its use in MS. Unfortunately there do not appear to be any clinical trials supporting naltrexone's use in MS, but anecdoctal evidence on the web indicates a lot of people have tried it, and *most* have done OK.

The key proponent of using low dose naltrexone for MS is Dr Bernard Bihari, a Harvard trained neurologist who practices in NYC (he's board certified in neurology).

Any thoughts? Bob

Your thoughts don 't count

Submitted by Anonymous on Sat, 2003-10-11 17:40.
Your opinion about what is necessary for MS such as suppressing the immune system is just unnecessary and incomplete. Perhaps it is what your drug does and what many drugs with little benefits for MS do. Just keep it for yourself. Which drug manufacture do you want to sponsor the LDN medical trial then? Do you know anyone can put into the market a new product Naltrexone based since this patent is expired by now? There are already several brand names available and they already reached the lowest prices they can meet. You don't smell that good either.
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art's picture

Re:Your thoughts don 't count

Submitted by art on Mon, 2003-10-13 07:12.
Now now - no need to go commenting on individuals smells. I can't help how I smell :-)

Clinical trials can be sponsored by organizations other than a manufacturer. The NIH sponsors many such trials. And for a drug that costs so little, it wouldn't take much to do so. Don't you find it odd that doctors who are having miraculous results with Naltrexone aren't doing all they can to help the rest of the people with MS? That seems a little at odds with the ethics of being an MD. Are you on Naltrexone? I'm guessing you aren't but that you sell it. If you are, tell us more!

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Re:Your thoughts don 't count

Submitted by Anonymous on Fri, 2004-03-05 16:38.
THE LITERATURE I READ on lowdosenaltrxone explans that the the "immune system is boosted." Dr. Bowling from his research states that MS has a hyperactive immune system so I do not want to take lowdosenaltrxone if it's conraindicated. Most medication is not contraindicated however the literature also states that copaxone should be eliminated.
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Re:Your thoughts don 't count

Submitted by Anonymous on Tue, 2004-03-16 23:48.
Maybe we're looking at this wrong, MS patients are supposed to be low in endorphins which help to regulate the immune system. What if instead of suppressing the immune system, we increased the endorphins? Suprise! this is the desired effect of low dose naltrexone. The low dose merely creates a very temporary endophin blockade to stimulate the body to overcome it. This isn't a major hard-hitting nasty drug with monster side effects. It absolutely helped me with the bone-numbing fatique and brain fog, I wish I could say that it made everything else just go away.... But still, being awake and conscious is a really good thing :-) And besides, it's been approved at a 50mg. dose, so I figure my little 4.5 dose is almost non-toxic.
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Re:Your thoughts don 't count

Submitted by Anonymous on Wed, 2003-10-15 07:58.
Dear Art, I am definitely not selling Naltrexone and I cannot understand how you could figure out any profit for doing it. I have my sister that started LDN 6 months ago in Italy. She has RR MS and since she started Naltrexone all her symptoms are in recession. She had an MRI two weeks ago and this showed clear signs or improvement. I have been in contact myself with some Italian MS experts in Italy; they are willing to start medical trials if I can find them the money to fund it. I know it might sound all this ridiculous but, in a few words it is all true and I have emails prooving it, money talk! You are free to contact me in private if you like, and I hope you do so because we are desperate to give to LDN the right attention, writing me to maxbtm@yahoo.co.uk You can also ask as many questions you like to the people in the lowdosenaltrexone group with 545 members at this time and I am in there as well (you need to sign in to join it but choose option of not receiving email directly because they are too many). There are people taking LND from a much longer time than my sister does... http://groups.yahoo.com/group/lowdosenaltrexone/ You can read freely other testimonials from Remedyfind: http://www.remedyfind.com/rem.asp?ID=4393 Best Regards, Massimo
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Re:Your thoughts don 't count

Submitted by Anonymous on Wed, 2003-10-15 10:16.
I agree with the previous AR, from the UK, which why I -- Roelof Osinga, the Netherlands -- have already written to the secretariate of one political party overhere.

MS is costing the state money in two ways. First by gradually disabling people so they can no longer actively partake in the economic process and second in direct monetary support most european governments provide to stricken citizens.

Also there is the tremendous cost savings opportunity when compared to the ABCr medications.

I'm hoping this will little pebble I've thrown onto the political hill shall start an avalanche coming winter! At worst we'll be were we are now.

Roelof
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Re:Your thoughts don 't count

Submitted by one-eyed-jack on Wed, 2003-10-15 13:54.
The real stakeholders in treating MS are the pharmaceutical companies, their shareholders, and whoever pays for the drugs. If everybody in the US with MS were treated with Rebif the annual cost to *some*body would be about $6B. What I can't figure out is why the people who have to come up with that kind of money can't find any to fund an LDN trial that could potentially save nearly all of it. That's not a small $ figure. I guess for the same reason they ignored penicillin for so long. http://www.biology.buffalo.edu/courses/bio129/Lect ures/lecture10.html Chris Sullivan
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Re:Your thoughts don 't count

Submitted by Friday on Wed, 2004-05-05 05:53.
Art, firstly, go to www.galwaybayfm.ie and click on audio streaming to listen to Keith Finnigan's current affairs interview with MS suffers, and Irish Doctor, and Dr Bihari (founder of the LDN organisation). this interview is about 3/4's of the way into the whole program, so you will have to 'forward' the other stories preceeding it. This interview was on last Friday, 30th April. Secondly, realise that the Crohn's Society or Organisation has successfully lobbied for the first LDN trial and it is underway now, What is the MS society doing for us sufferers? It's not the damned funding that's the problem, its the 'lack of immense monetary returns' for something with no patent that's the problem. Manufacturers stand to make very very little. Thirdly, there are so many OTHER medications being legally prescribed as off-lable for MS - when they are indicated for use in Parkinsons - Why not legally give us with MS off-label use of a drug indicated only for Alcoholics and Heroin addicts?
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art's picture

There's nothing on PubMed

Submitted by art on Mon, 2003-10-06 07:04.
As noted, there are ZERO papers listed for naltrexone and MS on pubmed. You can see what's on the web via this google search. The thing that strikes me as odd is that it is an immune system booster, which is generally thought to be something you DON'T want happening in MS.

I'm always stricken by these reports of MD's who use a particular treatment in their practice with miraculous results and they never run a clinical trial. Why is that? If they have the anecdotal evidence that it is working they would have little problem getting funding for the trial (from the drug manufacturer who would love another application or the NIH). Don't they want to prove its safety and efficacy and help spread the word? I'd be cautious when approaching any such situation - it doesn't smell right...

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Re:There's nothing on PubMed

Submitted by hmmm on Thu, 2003-10-16 17:33.
I think skepticism is not in order here. I think a trial is. If big science won't pay for it, the patients should organize and get it done...
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ldn

Submitted by Graham(UK) on Tue, 2003-10-07 03:26.
I’ve been following the story for a few years and at face value it does seem to be altering the course/curse of MS in more than just a few individuals. It’s very low cost and for a drug that’s been approved by the FDA at up to 300 mgs/day, taking ~3 mgs/day implies little/no risk. http://www.sbpost.ie/web/DocumentView/did-94010197 2-pageUrl--2FThe-Newspaper-2FSundays-Paper-2FNews- 2FIreland-2FAll-Ireland.asp
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Low dose naltrexone

Submitted by jomangie on Sun, 2007-01-28 14:17.

It seems to be very difficult to get a GP or Neurologist to prescribe low dose naltrexone or am I just not contacting the right ones?

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art's picture

Unfortunately

Submitted by art on Sun, 2007-01-28 19:21.

Many people find it difficult to get someone to prescribe LDN. You can try different docs, or get a phone consult with Dr. Bihari - his contact info

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Art Mellor, Accelerated Cure Project for MS, art-msnews -at- acceleratedcure.com

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ldn presceiber

Submitted by steve rogers (not verified) on Tue, 2007-02-20 16:03.

If you are in Oregon or N.cal and can't find a prescriber just email me or call 541-955-6655

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art's picture

You forgot to leave your

Submitted by art on Tue, 2007-02-20 18:11.

You forgot to leave your email address. Also, could you explain who you are? I'm assuming you are a Doc, but if not, why would someone call you?

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Art Mellor, Accelerated Cure Project for MS, art-msnews -at- acceleratedcure.com

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LDN is a great medicin for

Submitted by Belinda (not verified) on Mon, 2008-04-14 03:25.

LDN is a great medicin for MS but also for other autoimuundiseases. I use it 6 months (for PPMS) and have never feel so good! I feel my progression goes slower when I use LDN. You can get Naltrexone without a prescription (my neuro wont give it to me) and make your own liquid LDN. I have a strong believe in LDN and think that every MS'er should try LDN for one year because it has no side-effects and works better than the regular MS-medicins.

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The neurologists at my VA

Submitted by James Brundage-Neill (not verified) on Sun, 2008-06-01 20:28.

The neurologists at my VA medical center would have laughed in my face (they have disrespected me in the past for my taking responsibility for my own health) and no VA would pay for a drug with only anecdotal evidence supporting it. So, after reading about a woman who was marching to Governor Schwartzenegger's office in Sacramento to request monies for a clinical trial to be conducted by the state, and following the e-trail to Naltrexone, I did the unthinkable: I purchased Revia, online, via the internet. It was not cheap, and the Indian company appears to be well-known... but having to grind 50mg tablets and then hope I have more or less obtained low-dose (not over 4.5) dosages... well... I would feel safer with already prepared pills. Still, I am desperate for relief after presenting neuromuscular symptoms to the VA for over 10 years and still having not received a final diagnosis... I have only taken three doses for three nights (hopefully in 3.6 doses) but I am going to follow the 6-9 month protocol that I learned in one of the commentaries I found on your site. ... Nothing ventured, nothing gained. Sincerely, Yours

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