LDN Information & Check In
 

This is an interesting blog from a Writer with MS, who discovered LDN. Dr. Gluck of the LDN. org, wrote a comment, as well.

http://sclerotics.wordpress.com/2008/07/16/27-miracle-cure/

Thanks, Sally. I've been asking my Neuro to prescribe LDN for me but he refuses to do so. I even asked him to just let me try it for a few months - if it didn't help then I would not ask for more. No luck.....:rolleyes:

How long have you been on it? Which of your symptoms did you notice improvement in? How long did it take for you to notice those improvements?

How can I get a script for it? Do I have to go through an on-line pharmacy to get it?

Sorry for all the questions.....it's just that this article was really informative and I would at least like to try it.

Kelly, I PMed you some info.:)

I know I've said this 100 times, so, log off, if you don't want to hear it again..:D

I started on LDN in April of 2003 and the very first day, I noticed that I could stand up easier and faster, dizzyness was gone and i could pee. This initial stuff could certainly be from the placibo effect, but the staying power was certainly not.....it was all LDN.

I didn't have a lot of symptom relief, since I was already SPMS, when I started. I tried to go up from 3 mg to 4.5mg, but my legs got stiff and uncomortable, so, went back down to 3mg and stayed there for about two yrs. I am on 4.5 now.

This med, right from the beginning, had me feeling better.... I presume it's the endorphines, but I just had an overall feeling of well-being. The other DMDs, made me feel awful...UGH

As far as I'm concerned, LDN has stopped, or at least slowed the progression of my illness and dissability. The DMDs have some scientific proof, backing some of their claims, and LDN is, so far, Antidotal. I say, the proof is in the pudding and it works for me.:p

Peeps who start LDN earlier in their disease (RRMS), have reported even better sx relief, Than I ( Talk to Larry LDN or our Cherie here at PT. A friend in Austrailia, just e-mailed me that she started on 3 mg of LDN and loves what it has done and is doing for her.

Good luck to you, Kelly.:hug:

I really really really want to try LDN.

Last time I saw my neuro (who wears hearing aids) I asked him about the LDN. I think that he misunderstood me and thought I was talking about some other drug that I cant think of the name of right now (also starts with an "N")

I'm printing off some information about LDN for my neuro visit next week. I am so hoping that he'll give me a Rx for it...if not tho, I might ask my regular doctor the next time I go to see him.

Hopefully the neuro will write me a Rx. I dont see what it would hurt, and if it doesnt work, then it doesnt work. But I want to at least try it.

I dont know if there's any pharmacies here in Nebraska that can compound it for me tho. (I should have gone to pharmacy school like I was thinking about a few years ago...darn!)

I'm totally with ya Sally!! The so-called "approved" injectables did a number on me and I just felt miserable all the time. Guess I've been on LDN about four years, think it was about a year after you started that I finally convinced my neuro to prescribe it since all else failed.

Even though I have the nerve pain, it's always been there, and the neuro said at my last checkup, I seem to be stable. Just wish he would have let me take it before becoming SPMS.

Like Sally, the 4.5 mg. caused extra stiff legs so went back to 3 mg and here I've stayed. At the beginning my legs worked some better but the main improvement was in bladder function. I still have to go before I really have to -- LOL -- but without the LDN it's a total disaster. Yes, the well-being feeling is there too with NO side effects, plus it's sure alot cheaper than anything else!!

Try it......maybe you'll like it!! :)

Thanks for the info Sally!

Sure Vic -- Hop on whenever you're ready!!!! Good luck with your treatment!!!! :)

Sally, can you take it with other meds like Neurontin, Zoloft and blood pressure medicine?

My Neuro won't even discuss it with me. If I take it I'll try it and see if it works before I tell him I'm on it. He'll probably get mad and tell me to look elsewhere for care.....:rolleyes:

Kelly, both my Neuro knew and my PCP knows I am on LDN. I think my PCP would write the script now, but I can live with the arrangement I have. A good Doc in Penn, writes the Script and faxes it to Skips Pharmacy in Fla and they mail it out to me.

LDN doesn't seem to counteract with any other med I have taken. If you are on a narcotic pain med (they say) your pain med may not work as well, since LDN, at the high doses is a narcotic antagonist, but I and others have said, that isn't true. I took a narcotic during my tooth surgery and it worked just fine.

It is also suggested not to take it with the interferons, but some have with no problems. It is such a small dose that it really does no harm. It's hard to believe that it does so much good, but it does.

Of course, keep in mind, that, like any other med, you could be allergic to Naltrexone..... and some have been allergic to the filler the compounder uses. Lactose filler, for instance, if you are lactose intollerent.

My neuro just kind of shook his head when I asked him about it, but agreed to humor me and prescribe it. I explained to him that I understood there were no studies proving LDN did anything, that maybe it was all a placebo effect..But I was feeling so bad even a placebo would have been acceptable..

I've been taking it almost 3 years (I think :o), and I really like it. If I go over 4mgs though, my bladder goes into little spasms. Nothing painful, but really annoying, so I stay at 3.5. Most bladder issues have improved, I have a better overall feeling as well. For me though, the best part was being able to dream again. Sounds crazy, but that alone makes me feel better when awake..

I'm the writer of the blog that started this thread.
 

Hi guys...

Here's the scoop. And it's big.

I spoke this morning with Dr. David Gluck who runs the naltrexone info site. He's 75 years old, though from his voice I thought he was in his mid 40s.

I can only tell you that I was blown away on his depth of kowledge on the subject.

He knows about every study being done everywhere in the world and what the results are showing. Before they are officially published.

What he told me is that LDN is being found to be helpful in all conditions related to a misbehaving imune system.

It has been helpful in conditions ranging from cancer to autism, as well as the more obvious MS and Krohn's.

Most important to me, he told me that it has been effective in stopping Progressive MS.

As a progressive sufferer, I was led to believe that there was no current treatment that had any effect on it.

Given the description of my condition and reaction to the treatment, he was adamant that he believed that my condition was over. All I would have to do is keep taking the LDN.

The only other important drug that is contraindicated for LDN users is opiods. Stopping the LDN for one day before taking opiates eliminates even the possiblity of interactions.

Bottom line folks, today I was given permission to hope for a future again. This is probably the most signifigant day of my life and the consequenses are only now just beginning to sink in.

I'm too overwhelmed at the moment to go into detail, but trust me, when I'm done, EVERY PMS Patient will know about this option. One would be crazy not to give it a try.

It should be the first line of defense for all MS patients and it is currently the ONLY line of defense for Progressives.

Please help me spread the word. Someone else please make a special post with this info.

I'll be back with a lot more later.

Cheers!

Joe

Thanks, Joe, for coming here to Neurotalk....Welcome!!

Around here, the word has already been spread and I and others try to keep it an open topic. We discuss all of the MS therapies, meds and their efficacy, here at NT.

LDN is NOT a cure, Joe, and, even though, I appreciate your enthusiasm, please don't overrate it. I am on it now for 5+ yrs. and I love what it has done for me, just as you are discovering......but, I still have MS. LDN does not go back and undo the permanent nerve damage, already done by MS.

I firmly believe that LDN does stop or, at the very least, slows the progression of MS. I say that, not because it has been proven scientifically, but, from my exerience only.

I, like you, would love all PwMS to try it for year to see if it helps them. too.

Thanks again and do come back to let us know how you are doing and Welcome to the Family.:) :hug:

Narcotics, codeine and the interferons (for now) are not recommended with LDN. Copaxone is apparently ok, and I so know of some who've used LDN with one of the interferons too. They are currently wrapping up a trial that included people on Beta, Rebif, and Avonex, so they should have some idea from that whether they are compatible.

LDN has been somewhat of a miracle for me over this last 3+ years, and I was in pretty bad shape when I started. I don't think it works as well for everyone, but it is pretty obvious for some of us that it is working.

I've heard people on Tysabri claim that that drug has improved their disability significantly, and I know that LDN has that affect for some people too. Does that mean that it has repaired damage :confused: . . . I don't know. :cool: Why else would a disability that someone has for 2 or 5 yrs suddenly go away, then come back within days of going off the med, then go away again when they start using it again?

It took a several months for me to realize that the shelf-life on LIQUID LDN was only 3 weeks, and that leaving it out of the fridge was not a good plan (for me). Many people who've tried to raise or lower their dosage are keenly aware what "works" for them . . . so clearly it is doing something for some of us!

I believe that I would be in much worse shape by now, if it wasn't for the LDN. I don't think this med can save us from ourselves, ie. we can still overdo things or cause harm by not treating an infection, etc. . . . but for many, I think it can improve symtoms and stabilize the disease as much as we could hope for.

Like any drug though, I don't think it works as well for all PwMS (and/or perhaps other diseases it is used off-label for).

NO doctor has the right to refuse a rx for it, if we DEMAND it.

Cherie

I decided after reading about some successes with LDN that I would pursue it. I made 2 phone calls this morning to 2 neuros and left messages. One is actually gone until next month, so I called the other and just received a call back. (That was FAST!)

He said he doesn't and won't prescribe LDN until double blind studies have proven its effectiveness in pwMS. I should also mention that he has his own Tysabri infusion clinic. Tysabri = $$$. LDN = $0.

I'm not usually a conspiracy theory-type person, but it just makes me wonder, you know?


Now what?

Have you tried your PCP? Also, you could call Skips pharmacy in Fla ( he is the best compounder of LDN, IMO) and ask him to reccommend a Doc, who may do phone appts for scripts of LDN.

http://www.skipspharmacy.com/

I live in Ohio and call a Doc in Penn, every 4 mos., have a phone appt with him and he calls or faxes my script to Skips and they mail it to me. I use my credit card with both.

I also pay for my DD's LDN script, which she gets from her PCP. She has been in total remission since starting LDN, over 3yrs ago...:):):):):)

There will never be the kind of trials on LDN that there have been on the drugs that can make the pharmas billions of $$. I think that is common sense, really. He knows that.

I'd be curious whether he would rx Baclofen, Ritalin, or any of the other "symptom" drugs that we use "off label" . . .? In fact, I bet they've never even double blind tested Wellbutrin on MS. :cool:

If there's a will there's a way. ;)

Cherie

Thanks, ladies.

I will call my PCP here in town who likes to throw pills at everything. I'll bet he would prescribe it!

If not, then I will definitely use that link to Skip's Pharmacy.

Thanks so much! I'll keep you posted!

Dangit! The doc won't be back until tomorrow, so the soonest I would hear back is Tues. evening.

His nurse had never heard of it, so I told her to look it up on Wikipedia or the LDN website.

If you get your PCP to write the script, I'd still have them fax it to Skips or give it to you and you can send it to Skips and arrrange for them to send the meds to you. Not everyone knows the proper way to compound LDN.

Good Luck..:)

Did he give you a rationale for this? I totally understand the skepticism but from what I have read about LDN I don't really think it would be harmful to try it.

I suggest for all interested, to go to the LDN homepage and read and copy all pertinent info and take it to your Doc and make him read it..:D There is absolutely no good reason for any Neuro or PCP to refuse a script for you to try it. :rolleyes:..:mad:

http://www.lowdosenaltrexone.org/

:hug:

I just left a detailed mess for nero the neuro, and he called back and said tomorrow he should have more time to talk about it over the phone, my neuro is pretty cool i even have his cell number incase of serious emergency

prior to this I have read a few other threads about LDN and have been curious, so lets see if he is game, would love to drop 5-6 meds, that would be great

Again a big hug for Sally :hug: and thankl you

Where can I find the naltrexone info site? Thank you very much!

I asked my neuro for the OK to try LDN and my GP prescribed it for me. I am waiting to get some other drugs out of my system before I start LDN so I have a real baseline to judge from.

However, I cannot STAND articles like this that claim a miracle cure for MS and several other diseases. There may be ulterior motives to not promote or research/study LDN, but many people ARE taking it and MOST ARE NOT CURED!! Many have symptom improvement or feel a slowing of progression. I don't care who prints what... if ANYTHING (?perhaps Revimmune?) could guarantee to stop progression, everyone would be on it. Especially with so few potentially dangerous side effects.

I will wait until after my next MRI in Sept and will be starting LDN then...I think:rolleyes:

See my reply #22...I put the link there..:)

I agree, I did exactly that, along with the pharmacy information required and my GP said "Why not? You've tried a lot worse than this!"

I like a good, logical attitude.

I'm going to ask my neuro again, when I see her in August. If she won't prescribe, maybe she'll agree to let my PCP. I plan to ask my PCP with or without neuro's Okay.

Should I stop other meds before starting LDN? Are they compatible?

I read somewhere, if you're on an interferon you should stop it first, but what about a chemo med (Imuran)?

How about those for sx relief, such as Baclofen?

Any guidance or others experiences are most welcome and appreciated/

:hug:'s

As I mentioned previously, until the trial results are announced, they don't know for sure IF the interferons contradict LDN. Up until recently, it was Dr B's thoughts that they might cancel each other out in some way . . . but I do know of some people who found relief from LDN even while on the interferons.

As far as Imuran, I'd ask Skip. I know that people were allowed to continue with LDN in the Tysabri trials . . . but of course that is a whole different drug then Imuran.

Are you on an interferon? Does it not seem to be working for you? Have you considered Copaxone (with LDN) instead?

You can use LDN with any other symptom management drug (except Codeine and Narcotics), but most people I've talked to have found they can drop several of those meds once they start feeling better from the LDN. I dropped antidepressants after starting on LDN, but I still waited about a year to try it and I went through a long and difficult withdrawal from them. I don't take anything but the LDN now (and Naproxen, occasionally).

Cherie

Thanks so much Cherie!
I've tried the A, C, and R meds and we don't get along. That is why I take the Imuran. Not being on it is when I had my worse MS year, 2006.

I'll definitly ask about my meds before stopping them. I was wondering about a/d's as Lexapro has helped me immensely.

:hug:'s

Bappy, you can go right on taking your AD, if it helps you. I have been on one the whole time I've been on LDN, For anxiety/depression.

The jury is still out on taking narcotics, too. They did a study (don't ask me where) on using Morphine and LDN together. They say it causes you to actually use less of the morphine and yet, it still works on the pain. I took Darvocet and it worked great for my pain, while still on LDN. My Doc told me to stop the LDN, but I forgot and....it didn't matter.

Imuran is an Immune system suppressant, so, I'm not so sure of it working with LDN....it seems counterproductive to me, but, I'd ask Dr Gluck of the LDN. org. He did say it was ok to take IVSM.

Good luck..:hug:

Thank you...
 

Sally, I am confused. It happens alot.:rolleyes: Does LDN boost your immune system. I have been told to avoid vitamins that do so. Doesn't copaxone suppress your immune system? And yet, you can take LDN with copaxone. Is the LDN organization recommending it for those with RR ms or just more progressive cases?

I am also wondering if anyone has found out anything more about whether or not LDN and immuran are incompatible.

My neuro has told me that LDN is just providing a placebo effect. Of course, he is the one that does not want to prescribe anti depressants or stimulants either.

Barb, LDN is not an I mmune system booster persay....It does raise your endorphin level which in turn, helps to correct your Immune system response as to, not attack your myelin.

Just as the Interferons say they are not IS suppressants(:rolleyes:..they are, rather modulators, LDN is not an IS booster, rather, also a modulator.:)

Oh and LDN is recommended for all types of MS.

It's an opioid antagonist (a drug that neutralizes or counteracts the effects of another drug) I havent been able to find anything that says it boosts the immune system.

So, I guess for some reason, in the low dose, the receptor that the LDN works on, must have some problem...recepting...when the person has MS, and the LDN must somehow make it more...receptive...

I have no idea if I'm right about this, but maybe the MS makes our bodies either not produce enough of a chemical, or makes too much, or makes certain receptors in our bodies not work right...and the LDN either increases or decreases the chemical, or it makes the receptors of the chemical work better.. I dont know.... but something about the LDN helps some people with MS. Why it helps some people and not others, I dont know.

I'm going to ask my neuro about LDN next week when I see him...hopefully he wont refuse outright to give me LDN...and hopefully I'll be one of those people who can be helped by the LDN.

I believe this is the link to an interview with Dr Skip Lenz (Pharmacist), where he explains the immune modulatory effects of LDN:

Scroll down to:

Health Talk, August 22, 2007
On this exciting episode of Health Talk, Dr. Hoffman is joined by Dr. Skip Lenz. They discuss Low Dose Naltrexone (LDN), how it works and who should be taking it.

http://wor710.com/pages/48794.php

(I haven't time to listen to it right now, but if someone who does will let me know if this is the right link . . . thanks!)

Cherie

I have really never seen anything about LDN and alchohol. Is that a potential contradiction?

If you take LDN, can you have a drink now and then? Does it mess with the effectiveness of the LDN?

In the higher doses of Naltrexone it's used to help you with your addictions of alcohol and opiads, but at the LDN doseage levels, it doesn't work that way. Of course you cannot drink to excess but a drink a day for a non-acoholic, is not going to hurt.

Serious question...how would you define excess? I would say that a few times a year I make up for that drink I don't have every day! :eek:

I really have been curious about this.