low dose naltrexone

[lchoppel]

Does anyone here take this?

[sich59]

I've been taking LDN for almost a year now. I have PPMS and I found that it provided some relief for my symptoms. I don't notice it as much anymore but have a feeling if I stopped taking it I would notice the symptoms getting worse.

It isn't a cure-all, but in my opnion is does help keep things at bay

[djprieve]

LDN

tHANKS, i AM HOPING TO START LDN SOON

[knuckle]

Annapolis...great town. I used to live there.

If you go to www.LDNaware.org and click on the "Resources" tab you'll find some user testimonial documents.

Also, on the "Forums" tab the LDN Research Trust has testimonials.

I think LDN should be the first drug tried for MS. Give it six months and see how you feel. No progression? Give it another six months. Maybe you don't need the CRAB drugs afterall.

[JHubbs]

Whats the deal with Alpha Lipoic Acid and LDN. In regards to treating MS, do you have to take these two drugs together? Are there specific reasons why the two are prescribed? Do certain diseases require taking both drugs for effect?

[knuckle]

Go to www.LDNaware.org, click on the "Resources" page, go to the bottom and watch "Dr. Burt Berkson Presentation on LDN and Alpha Lipoic Acid Therapy for Cancer & Autoimmune Disease"

It will explain everything in detail.

[knuckle]

Another resource that may help...

If you google "LDN Research Trust", under the "Information" tab you can download the recent November newsletter which contains links to many YouTube presentations from the recent UK LDN Aware Conference.

[JHubbs]

So I did my LDN research, LNDAware.org, LDN You tube channel, etc. Sounded like a great idea. I understood the concepts of how it works, prescribing it at night in low doses, endorphin release, etc. It's inexpensive and practically harmless (compared to DMDs). You can even obtain it easily as I learned from reading about "Skip's Pharmacy".

I gathered all this information and even printed up the form from the LDN website that let's me educate my doctor in case she is unfamiliar with LDN.

I see a well-respected, "very expensive" rheumatologist and medical researcher outside of NYC for my lupus (yes, I have both). She's been a great help for me so far, she has no problem supporting any alternative medicine I have suggested along with my treatment. But when I asked her about LDN, it looked like she was going to punch me in the face for even mentioning the word naltrexone.

she knows all about LDN. She told me how controversial it was at the yearly October medical conventions. Basically, I was shocked by her reaction after feeling so positive about the possibilities of LDN. Sounds to me like another too good to be true cure. I have just have way too much respect for her opinion to disagree with her based on any information I got about LDN. I didn't expect her reaction to be so strong.

Has anyone else had this happen when talking with their doctor?

Knuckle - what would your response be to this?

[Tawanda]

LDN: Guilty of not working

So I did my LDN research, LNDAware.org, LDN You tube channel, etc. Sounded like a great idea. I understood the concepts of how it works, prescribing it at night in low doses, endorphin release, etc. It's inexpensive and practically harmless (compared to DMDs). You can even obtain it easily as I learned from reading about "Skip's Pharmacy".

I gathered all this information and even printed up the form from the LDN website that let's me educate my doctor in case she is unfamiliar with LDN.

I see a well-respected, "very expensive" rheumatologist and medical researcher outside of NYC for my lupus (yes, I have both). She's been a great help for me so far, she has no problem supporting any alternative medicine I have suggested along with my treatment. But when I asked her about LDN, it looked like she was going to punch me in the face for even mentioning the word naltrexone.

she knows all about LDN. She told me how controversial it was at the yearly October medical conventions. Basically, I was shocked by her reaction after feeling so positive about the possibilities of LDN. Sounds to me like another too good to be true cure. I have just have way too much respect for her opinion to disagree with her based on any information I got about LDN. I didn't expect her reaction to be so strong.

Has anyone else had this happen when talking with their doctor?

Knuckle - what would your response be to this?

I brought up LDN to my neuro. I got prescribed, but not at his urging, at mine. I was utterly disappointed. Nuthin'( and not cheap ENOUGH to try any longer)! My neuro didn't give me a reaction either way, and not an "I told you so", either, thankfully. I get the feeling the jury isn't totally in on LDN, but getting there quickly.

[knuckle]

JHubbs,

Plenty of neuros and GPs prescribe LDN and it sounds like your rheumatologist doesn't know much about the drug. Just because she's well-respected and very expensive doesn't mean she's an authority about LDN anymore than she's an authority about other drugs outside her specialty.

"She knows all about LDN" - really? More than all the other neuros and GPs who do prescribe it? Is she smarter than my neuro? Is she smarter than the researchers at Penn State, at Stanford? Is she smarter than all the doctors in the UK who prescribe LDN?

Has she been the websites I referenced? Did she watch Dr. Berkson's presentation? How can anyone discount his success rate with Lupus? Dr. Berkson has treated hundreds of Lupus patients with LDN (and Alpha Lipoic Acid). Is she smarter than Dr. Berkson?

It really irks me that doctors like these have no problem immediately putting patients on toxic immuno-suppressant drugs without trying LDN first. With MS, they'll be perfectly happy to prescribe you chemo that can damage your heart, or wait until you're in a wheelchair, before they try LDN.

LDN is less toxic than aspirin. It's not like it is some scary voodoo treatment. LDN is off-label use of an FDA-approved drug. Why is this so different than any of the other off-label drugs they use to treat MS? Baclofen? Amantadine? Provigil? Diazapram? I've taken all these drugs and more and at the very least can state that LDN is the best drug I've ever taken for MS-fatigue.

It's your body and your choice. If you're happy with the results of your treatment stick with your rheumatologist. If you're not, find another doctor who really knows about LDN.

Twanda - How about some specifics? Like how long did you take LDN? Did your MS progress while on it? How did it help with fatigue, heat tolerance, bladder control, etc.

[knuckle]

I wanted to add one other point...according to the LDN Research Trust, 831 doctors currently prescribe LDN in the UK.

How many in the US? Who knows?

On www.LDNaware.org - on the UK page, all the MS charities are listed supporting LDN. On the US page, none.

[davmets1]

I stopped taking tysabri in October of last year. I've been on copaxone and LDN since January. I do 3.0 mg of LDN each night, I notced improved sleeping right away when I started taking it. I suppose I could stop taking it for a while to see if I feel any different...but for the cheap price, I'll wait a while before trying that.

By the way, my neurologist has quite a few patients taking it. He didn't bring it up to me to take, it was my idea, but he had no problem prescribing it for me. If you have a neurologist that won't do that for you, you have a very closed minded one.

My opinion would be to try it out, what have you got to lose? Of course if you're taking a CRAB med, copaxone is the only one that's compatible with LDN.

[Tawanda]

J

Twanda - How about some specifics? Like how long did you take LDN? Did your MS progress while on it? How did it help with fatigue, heat tolerance, bladder control, etc.

Hey knuckle...I was only on it a month. Nothing happened, nothing at all (bad or good) but perhaps a month was not long enough to judge. Even if it was "voodoo", I would not have cared if it did something for me. At least there weren't side-effects. These are the M.S. drugs I take:
Avonex
Klonopin
Provigel, sometimes
Prozac
and:
cod liver oil
vitamin D 5000

I have tried every drug/vitamin in the book for my M.S., and this is what has stuck for me (but looking into Nuvigel as Provigel seems to be falling short). I hate taking pills, so what I take has to work pretty good before I add it in to my regime.

[knuckle]

Thanks Twanda.

I think people need to assess whether LDN works for them just like any of the CRABs - give it at least six months and see if you observe any disease progression.

Most people experience a dramatic reduction in fatigue shortly after taking LDN, which is great of course. Often another result is lifting of "cog fog" and pain. But what we really want to know is if LDN slows, or halts, disease progression. Will LDN keep you off a cane, a walker, or out of a wheelchair?

Since we will never see a LDN vs. CRAB clinical trial we are all on our own to make the judgement on whether LDN is at least 30% effective at slowing disease progression. That is all it really has to be, 30% effective, to be a preferred treatment.

My opinion is that if you are newly diagnosed, LDN should be the first drug tried because it is non-toxic, inexpensive and an oral capsule. If you are newly diagnosed, more likely RRMS, your MS is unlikely to progress much in six months so what is the hurry to jump on a CRAB treatment?

What if you do great on LDN? What if it is more effective for you than a CRAB? It seems to me you would want to try out LDN first rather than wait 10 years, after those T-cells have chewed-up your myelin.

I think it is really a shame that most neuros in this country don't see it this way and instead give a (devastated) person newly diagnosed with MS a choice of basically four ineffective drugs, especially over the long-term, not to mention their administration, side-effects and cost.

Finally, for many with MS, these drugs, Tysabri, etc. are simply out-of-reach due lack of health insurance coverage. Even with coverage, these drugs can lead to real financial hardship and for that reason alone LDN should be considered. I'll stop now because there are organizations in this country whose entire mission is to aid the plight of MS suffers who are doing nothing to support research of LDN because it jeopardizes their financial interests.

[skreynolds57]

I took LDN for over six months and discontinued. I had no negative side effects but saw no symptom relief. As for progression, I'm 24 years in and my progression is very slow. I don't have attacks or an active inflammatory, demylinating disease.

If it were early, I see no reason not to try it but as for SX relief, take a shot. Its not like just about anything else that just made me more fatigued.