Low Dose Naltrexone LDN

wmonique2 · Post by **wmonique2** » Sat Mar 30, 2013 3:42 pm

Tex,

has anybody asked Polly what she thinks about this treatment?

Thanks,

Monique

Post by **tex** » Sat Mar 30, 2013 4:28 pm

I don't recall that she has ever offered any opinion on it. She may not have an opinion on it.

Tex

wmonique2 · Post by **wmonique2** » Sat Mar 30, 2013 4:52 pm

Tex,

Yeah, I checked all the links you provided and she didn't chime in on any of them...The reason I am asking is because today I had an interesting conversation about this with a friend who is a doc in psychology and a medical researcher. She cautioned that serotonin turns to melatonin at night and that can cause serious sleeplessness, which is what some complained about (I already take melatonin at night). And also she explained that it suppresses our overactive immune system, which is what we have then it boosts it again.

Just thought I'll share her POV. Anyway, I am having her read the plethora of info on it.

love,

Monique

Eric · Post by **Eric** » Wed Apr 03, 2013 8:05 am

I did lots of LDN research months ago when I first heard of the treatment. Sleep issues seem to mainly occur when starting the med but soon normalize. My understanding is that LDN is what you might call an immunomodulator. It will suppress an overactive immune system, but it will also boost an underactive one.

wmonique2 · Post by **wmonique2** » Wed Apr 03, 2013 8:30 am

Eric,

Thanks for chiming in...I am still on the fence about using it. A little scared, actually because of the insomnia thing. I am already an insomniac...

Monique

Eric · Post by **Eric** » Thu Apr 04, 2013 12:56 pm

Understood; the effect seems to vary, but most of what I've read indicates the majority of people find it tolerable/worth it. However, I've seen two or three accounts of people stopping the med after a few days because it wasn't comfortable for them.

Zizzle · Post by **Zizzle** » Thu Apr 04, 2013 1:46 pm

I wonder how many MCers have ever tried Plaquenil/Hydroxychloroquine (probably for associated autoimmune diseases?)? It's also an "immunomodulator." In fact, docs don't really know how it works, but it helps to control many Lupus-like autoimmune diseases including mine. I'm tapering prednisone, now down to 10 mgs/day, and still no sign of MC. My skin rash is 98% under control too.

Plaquenil is an anti-malarial, and I'm reading it's often used for people with Lyme-induced autoimmune conditions too. One possible side effect is stomach discomfort or D, but I haven't experienced either.

Just wondering if others have found it helped the MC...

Eric · Post by **Eric** » Fri Apr 05, 2013 8:58 am

Thanks Zizzle, I don't think I've heard of that but I'm interested since lyme is part of the puzzle I'm piecing together.

Post by **tex** » Fri Apr 05, 2013 12:06 pm

Eric,

FYI, Polly and several other members attribute their MC to an extended regimen of antibiotic treatment for suspected Lyme disease (which was never actually diagnosed, in her case).

Tex

Eric · Post by **Eric** » Fri Apr 05, 2013 1:04 pm

Thanks Tex. Lyme diagnosis was after I knew about the MC - refused abx treatment for lyme since they have caused such trouble in the past.

wmonique2 · Post by **wmonique2** » Sat Apr 06, 2013 9:05 am

Tex,

The LDN website claims that it helps with IBS, ulcerative colitis and Crohn's. Does that mean that it can help us? I don't see much difference between them and Crohn's and us. (I take mesalamine which is usually given to Crohn's patients).

Thanks,

Love

Monique

Post by **tex** » Sat Apr 06, 2013 9:39 am

Hi Monique,

Yes, there are absolutely no medications labeled for treating MC, so every drug prescribed to treat it is an off-label use. Therefore, doctors simply prescribe the drugs that have been used for treating other IBDs.

LDN is not simply used to treat IBDs, of course — it's used to treat virtually any autoimmune disease, so the possibility certainly exists that it may be helpful for treating MC, at least in some cases.

You're more than welcome, and if you decide to try this, I hope that it's effective.

Love,
Tex

wmonique2 · Post by **wmonique2** » Sat Apr 06, 2013 9:46 am

Thanks Tex,

I am on the fence about it. The only reason I am not plunging is the insomnia part of it and also I am scared to death that it would aggravate my symptoms although I am not sure that is has a direct effect on that.

I am gonna wait until I am more stable. Or maybe not, since if I tried it now it would certainly tell me if it's gonna help or not.

I am confused. don't know what to do.

Love,

Monique

Post by **tex** » Sat Apr 06, 2013 9:52 am

Monique wrote:I am confused. don't know what to do.

Active MC makes clear thinking and decision-making about a hundred times more difficult.

Love,
Tex

wmonique2 · Post by **wmonique2** » Sat Apr 06, 2013 10:52 am

Tex,

Thank you for clarifying that. I am no thinking clear enough to figure that one out

love,

Monique