LDN (low-dose naltrexone) anybody?

I became aware of LDN many moons ago when I was first researching Graves' (autoimmune hyperthyroidism that sometimes moves into hyPOthyroidism which is what happened to me).

LDN definitely has promise for MS and I am aware of Graves' patients who have used it with success.

Additional research shows possible benefits with Lyme.

Is anyone taking it? Any info to share?

Thanks to all who post!

I have been on it since May last year. Started at 1.5, tried 3, but 4.5mg works for me. I started taking it when I was dx with MS. I contribute LDN to my brain lesions healing and the gradual fading of my lingering symptoms. I definitely recommend LDN. My first MS neuro would prescribe LDN, but only after I tried the 7 MS FDA approved drugs.... and I no longer see her.

I pay 164.00 for a 6 month prescription. Almost no insurance will cover LDN because there is NO patent on it and it's extremely cheap. 89 cents a day compared to 115.00 a day for an MS drug. My insurance was reimbursing me for LDN, but they just sent a letter that they will no longer cover compounded medications because of the meningitis outbreak 4 years ago, all BS really. Thankfully though, it's only 328/yearly.

There is a whole conspiracy behind LDN. I searched the internet for doctors for months and found 1 doctor who did PHONE consults. Like seriously, I called him and he prescribed it over the phone. Now my Lyme doctor prescribes for me.

I noticed a difference in fatigue within weeks, and my hand numbness went away about 2 months on 4.5mg. Try it, you won't be sorry!

Here is a good recent tread discussing LDN—I love the stuff. I posted some info about it and my experience with it:

www.healingwell.com/community/default.aspx?f=30&m=3239020

Let me know if you have any q's—

-p

The doc I was seeing in Boston for my thyroid put me on it. I tried it for about 4-5 months with NO improvements in any of my symptoms. So I discontinued it.

I wasn't taking any extra immune support. Just the LDN. It didn't make any of my symptoms better, so I stopped. But I never had any pain type issues.

cd3764—

The text I quoted was from the website link at the bottom of my post (from the other thread)—I grabbed it from a commenter called "JDC" who posted the comment July 28, 2014.

Regarding the other benefits—unfortunately, I can't recall a lot of detail—it was over a year when I last researched LDN. But if you do a search on LDN just within this healing well site (without including lyme) you'll see that many people are taking it for various disorders (chron's, CFS, fibro, psoriasis, lupus, Parkinson's, RA, colitis, IBS, chronic pain, thyroid, diabetes…)

Here is another good article:
www.sciencedaily.com/releases/2011/09/110902133047.htm

-p

Me again

You inspired me, Pirouette, to take a peek in my book on LDN.

In the extensive resources section at the back, Elaine Moore has a section "LDN Patient Advice for Doctor Appointments" with links to articles that patients might find useful to share with their doctors when requesting an LDN prescription.

I was then reminded that Elaine Moore maintains a website and there are a bunch of articles on LDN with medical references.

Yeeeeehaaaaa!!!!

Post Edited (cd3764) : 12/12/2014 4:14:49 PM (GMT-7)

You are just too sweet, Piroutte!!

While I am very familiar with the site you linked, I'm glad it's posted here since others might benefit. Janie Bowthorpe even has a section on Lyme.

I joined the 20% of Graves' patients who go hypo after remission. That happened back in 2010 and I'm still taking thyroid hormone replacement so I doubt I'll be one of the temporary cases ;)

Thankfully, I learned enough about thyroid disease to help me identify a doctor I can work with. I kissed 4 toads before I found my prince(ss) :)

I'm doing very well thyroid-wise by getting regular labs and any appropriate dose adjustments.

Oh, in re-reading Elaine Moore's articles about LDN, I was encouraged to read that it can be dosed in the morning which reduces the chances of insomnia and vivid dreams.

Seems like a win-win situation. I hope my LLMD agrees :)

Oh, Pirouette!

Your story is all-too-common! So sorry you suffered needlessly!!! I was an active participant on multiple thyroid forums for over 5 years and I find it absolutely revolting that most MD's are clueless about thyroid issues when they are so very prevalent. Patients shouldn't have to educate themselves to the extent that seems to be necessary.

Hyperthyroidism gets a doctor's attention. I barely had any symptoms when I was diagnosed so, to develop almost 40 after starting treatment didn't seem right. My doctors over-medicated me with anti-thyroid drugs since they were slaves to TSH. Yep, I know what being hypothyroid feels like and brain fog certainly didn't make things easy.

I had unknowingly entered remission when I finally felt comfortable with the knowledge I'd acquired and was able to fight back lol Still, I'm glad I'd partnered with my current doctor because she was caring for me when I needed to start thyroid hormone replacement. I've basically "led" my treatment but, that's OK as long as I get the meds/doses I need ;) After all, I'm the one living in my body.

My family has signed the Thyroid Change petition and, more recently, the Lyme petition that was circulated around on here. We've joked about my "luck" in getting such controversial health conditions lol

I so agree with you about MD's and the lack of nutrition counseling. Health care in America is more symptom treatment vs. maintenance of health - blech

We will prevail in spite of them all!!!

I will definitely update and thank you so much for your support!! Best wishes to you as you tame your Lyme beast!!

bluebyyou—
Awesome that you had immediate results. I think you're one of the lucky ones. It took me some work but I finally got there. Hope it continues to help you. I might try to increase my 4g to 4.5g soon—having more and more muscle pain lately.

cd3764—
Good for you—leading your healthcare. I think that's what it comes down to for us—which is so hard especially when we're at our worst. If people only knew… And it is great that your family is so involved and supportive. They are part of the team!

-p

I think I should try this for my shoulder - LDN is new to me.