Help with LDN

[AnneLouise]

okay, my neuro wouldn't prescribe LDN. I think he wanted me on avonex, though I chose copaxone. He really wants me to try Tysabri, but I was tested positive for the JC virus. Though I doubt I would have taken Tysabri. I really don't want to go this way. We feel I'm spms. I don't get what relapse/remitting is. Must be what I had 20 years ago.

Anyway, I saw my gyno today. He is also a nutritionist. He already has me taking a compounded progesterone (which I swear by), and we were talking about LDN. He wrote me a prescription for it. Plus recommended other supplements.

My questions are: Is it "normal" for a dr other than your neuro to prescribe LDN?

And do you feel differently using LDN?

I feel I progressed past rrms. And I know there's another way to treat ms. I've been reading about LDN, I just want feedback from real users.

[FL_Jhawk]

Who cares who writes it for you?

The thing to care about is the dosage. My neuro, who is also a friend, wrote me a script for the normal 50 mg tablets, not really understanding how LDN is used in MS. This was fine with me. I have had organic chemistry and can easily dissolve a tablet in water and figure out the exact dosing that I want, so this works great for me. Many people start out at 2 mg, so you can dissolve one 50 mg tablet in 25 ml of water, such that 1 ml of the dissolved soloution will give a 2 mg dose. Dissolve in 50 ml of water and each ml of solution will give 1 mg, if that is easier. The tablets disssolve easily. Mix and store in a small bottle and store in the fridge. I use on old srynge to do the measuring.

I think copaxone is a good choice to go along with LDN. Some say LDN interferes with the interferons.

[knuckle]

The issue with LDN is many doctors, especially neurologists, are unfamiliar with it, how to prescribe it, or where to get it. Plus LDN doesn't have a big pharma marketing machine behind it sending in sales reps to detail the drug's applications.

Here is letter that should help:

http://www.ldnaware.org/uploadeddocu...-my-doctor.pdf

As for "Do you feel differently using LDN?" - yes. You feel "better" because you experience a 2-300% endorphin rush the day after you take it. Endorphins reduce pain and increase pleasure and most people who take LDN for MS quickly see an improvement in fatigue and pain.

Endorphins are hormones that support the proper functioning of the immune system and also are generated by exercise and direct sunshine on the skin / vitamin D. People who live in darker / colder areas of the world have higher incidences of MS, as well as other auto-immune diseases, because they are endorphin deficient.

[Torn]

I've been using ldn for about a month or so. I don't feel any better unfortunately. I've heard wonderful things, but don't think it's for me. I don't think you can take with other dmds but I'm not sure. Good luck with that. I'm on 4.5.

[knuckle]

If you want to be a little argumentative with your neuro who won't prescribe LDN, ask them if you think it's a good idea to take a vitamin D supplement for your MS.

They'll probably say yes and go on how vitamin D seems beneficial for MS patients. Then ask them about exercise. They'll say of course, exercise is great.

Ask them why.

Now the neuro thinks you're being a pain because you're making him or her think.

So, you say, don't vitamin D (sunshine) and exercise produce endorphins? Well, yes says your neuro, they do.

So, getting some direct sun, some daily exercise should be good for my MS, right? Should help you says your neuro.

So, what's wrong with taking LDN? All it does is increase my endorphin production. The neuro now is not happy - you have outsmarted him or her.

And then you hand your neuro the letter. If they still refuse, it just may be they are more concerned about their bank account, their ego, than your health.

[MarkLavelle]

If they still refuse, it just may be they are more concerned about their bank account, their ego, than your health.

...or maybe they just don't think the research on LDN is convincing enough yet. IMO, it's not unreasonable to want to see human trial results for statistically significant numbers.

[knuckle]

Who's going to pay for a human clinical trial for a generic drug that costs less than 50 cents a dose?

Still, people have been taking LDN for MS for years and surveys have been done:

http://www.ldners.org/surveys.htm

[JerryD]

I have been on LDN for a few years. I started with a 3mg dose and I am now on 4.5mg dose. It is compounded by a compounding pharmacy from the standard 50mg pill.
I wholeheartedly believe in this drug. My neuro didn't even know about it (even though there is plenty of info on LDN / MS on the web).
I had to search out a doctor that knew about this treatment and was also a MD. My insurance doesn't cover his consultations or the prescription. If I was overdosing on heroin, my insurance would pay. Such is the way of the world !!
I am disgusted with standard medicine and the lame *** practitioners, so I won't rant.
Suffice it to say, I sleep better with LDN, than without. The NYC doctor who began using this technique was thinking 'out of the box'. In my mind, he did what every doctor should be doing.
It is a relatively harmless drug that assists the body's regulation of endorphin production.
Your regular doctor or neuro, probably will not know about it. But if I were you, I would be a 'bee in the bonnet' of your 'health care provider' . And if your regular doctor prescribes it, your insurance will probably pay for it. And it is relatively inexpensive.
LDN has been a life changing blessing to me. Good luck!!

[Tapdancer]

Jerry, does your insurance company pay for it? I am pretty sure that Medicare does not cover it. Glad it's cheap, because it's been great for me.

[Tomjadg]

Can I take this with Ty ?

[knuckle]

My opinion...you can take LDN with Tysabri or any other DMD but you can't take it with painkillers. Here is a link to explain:

Drugs To Avoid When Taking Low Dose Naltrexone

http://www.webspawner.com/users/avoi...ldn/index.html

Now it is doubtful any neuro is going to prescribe LDN along with a DMD, and for good reason. The neuro has no idea how LDN will impact the efficacy of the DMD.

But, again in my opinion, if you understand how LDN works, by causing the pituitary gland to over-produce endorphins, LDN should basically have the same effect as getting a large dose of vitamin D / direct sunshine. If you ask your neuro if it's OK to take vitamin D or get a little sun while on your DMD they'll probably say fine.

Vitamin D / direct sunshine generates endorphins, the reason why after spending some time mid-day at the beach you feel good. Not coincidentally, most people think vitamin D / direct sunshine has a positive effect on MS.

Of course, we all know that there is a higher likelihood of acquiring MS if you live in a darker, colder climate, or a place where your skin cells are not producing much vitamin D.

Then consider that LDN has shown efficacy not only with MS, but other autoimmune diseases like Psoriasis, Fibromayalgia, Rheumatoid Arthritis, Lupus and Crohn's, to name a few.

And that the new Biogen drug for MS, "BG-12" is also used as a Psoriasis drug, and is being researched for the other auto-immune conditions. BG-12 is "dimethyl fumarate" a refined version of Fumaric Acid, which is created by the Citric Acid Cycle of our skin cells...but only when exposed the vitamin D / direct sunshine. Fumaric Acid has been used by dermatologists for Psoriasis for years.

BG-12 produces endorphins and if you read about experiences of people who have been on the clinical trials they report less fatigue and less pain.

It is when I realized this connection between LDN, BG-12, all these auto-immune diseases, that I thought treating MS with the CRAB drugs may not be as effective as increasing daily endorphin production. The clinical trial efficacy data of BG-12 versus the CRABs seem to support this.

[AnneLouise]

Thank you all for your replies!

I printed out the letter knuckle posted, actually more than one copy. And I plan to use at least one!

And, I, too will have to search for a new neuro. If this doesn't change his mind. But I'm going to start looking now. Not wasting my time.

A lot of the supplements my gyno recommends are the same as knuckle and others have listed as ones they take.

Where does everyone get their supplements? Do you get them online?
And, again, thanks!

[knuckle]

AnneLouise,

I'm in your neck of the woods and my neuro prescribes LDN, but I think I'm his only patient and he'd never heard of it until I "educated" him. He's pretty old school but open-minded.

Send me an email if you want his name.

Likewise, JerryD gets his down the road from me in Devon from an integrated health doctor - Dr. Mulders. I'd suggest trying him first as he can help you on the bigger picture of vitamins, blood tests, etc.

I get my supplements online from Swanson's and I find they usually have the best selection and pricing, especially if you catch a sale, which are pretty often.

[Tapdancer]

knuckle, do you also get Calcium AEP from Swanson's? malic acid?

[ddsan]

LDN

My GYN (a friend) originally wrote the script for LDN after reading all the material I gave him. After I was on it for 6 months I told my neuro and gave him all the info. Over the years he has had other patients that went on it and he now writes the script for me.
I get mine from Skips Pharmacy in Boca Raton, FL as do many other MSers. The script can be phoned or Faxed in.
I take 4.5 and wouldn't go without it. I, too, have progressed to SP after 20 yrs. I took it while on Copaxone also. Good luck with it.