An update on my LDN therapy: A Miracle? An unequivocal YES!

[Zizzle]

Jan,
I had temporary worsening of muscle twitches and hand tremor when I started LDN. The twitching subsided after about a month, maybe 2. My autoimmune disease was in remission at 3 months. I took extra magnesium and calcium during that time, but not sure it helped. Many symptoms seems to get worse before getting better on LDN. Maybe you didn't give it enough time? I had absolutely no muscle twitching problems after the first few months.

[Lucy_B]

Hey Monique, MZH, Zizzle, et al! I'm getting ready to move forward with LDN and have a question about sourcing. Where do you all get your medication? My doc called it in to a local compounding pharmacy and it's ~$80 for a one-month supply (starting at 1 mg. then going up to 2 mg. after a week). My insurance doesn't cover it, which does not surprise me. But I still thought it would be cheaper than that... I checked out www.buyldn.com and it looks like a better deal there (not sure about shipping). My main concern is whether I can get it this way without a prescription and also whether it's safe to order online. What do you think? Do any of you use a mail order option?

Also, do you have any handy dandy LDN tips/tricks/suggestions/warnings you'd like to share? :)

Thanks!

Lucy

[Sheila]

Hi Lucy,
I've ordered from Israel (buyldn.com) twice without a problem. My PCP won't prescribe LDN unfortunately. I take it for Sjogrens (AI disease) and will attempt to get the RX from my rheumatologist when I return home for the winter. If I can't get a script from him, I'll continue to order from Israel. Even with shipping, the cost is less than the $80 you're paying now.

I have had definite improvement of SS symptoms as well as improved allergy symptoms. There have been no bad side effects except for vivid dreams.

Good luck,
Sheila W

[Lucy_B]

Thanks, Sheila! Good to know. About how long did it take for your meds to arrive?

[Sheila]

The company changed their shipping procedure between orders. They are now shipping from Singapore and the last order took 2 weeks. I'm going to order a 3 month supply next time, if necessary.

Sheila W

[wmonique2]

Lucy,

Have your doc call Skip's Pharmacy in Boca Raton FL. the best compounder around and you can get it for less than $30. He is the foremost authority on LDN.

I get it in a cream to bypass the gut. And join us at:

https://www.facebook.com/groups/3808297 ... p_activity

And join : https://www.facebook.com/groups/IBDLDN/

We gonna need your email or FB name to invite you

Good luck,

Monique

Tex ---- I never got any notices on this thread... I wonder why...

[Lucy_B]

Thanks, Monique!! Super helpful. I'm so glad this drug is working for you! Hoping I will be another success story. That would be awesome. :)

[louis]

I think if it really will work for you lucy, i might give it a try too.

But do you have any further autoimmune diseases, besides MC?

[Lucy_B]

Hey, Louis-

Well, not technically. But I do have high thyroid antibodies (which my doc said is "pre-Hashimoto's") and I've had numerous miscarriages, all of which were attributed to some nebulous "autoimmune" cause. I also have slightly high ANA and high serum TNF-a (both indicators of autoimmune issues/inflammation). Essentially, I'm hoping the LDN will prevent additional AI diseases from reaching fruition.

[tex]

Tex ---- I never got any notices on this thread... I wonder why...

If I recall correctly, there's a built in protocol such that if you ever fail to respond to one of the notifications about a post, the system will deselect (cancel) future notifications for that thread. Or maybe the cookie from the discussion board in your computer has become corrupt. Try clearing the cookies on your computer. The easy way is to click on the link below (that says "Remove cookies set by this forum"), and follow the on-screen directions. When it says to "close your browser", be sure to close all open tabs, not just the one you are using at the moment.

If your browser automatically fills in your username and password when you try to log in the next time, the cookies were not properly cleared, and you may need to go through the procedure again. If it asks for your username and password when you try to log in again, the cookies were properly cleared.

Tex

[Lucy_B]

Well, first night on LDN has been kind of harrowing. :( Took 1 mg. at about 10:30 p.m. and went to bed at 11:00. Never went to sleep. At around 1:00 or 1:30, I started having awful stomach cramps (like a gassy feeling). Got up once to pee around 2:00, then again at 3:30. At 5:00, the pooping started. At first it was one of my normal loosey goosies, but now it's turned to WD. Monique, I'm assuming this may be why you use the cream. :) At any rate, I wasn't surprised by the insomnia but hadn't heard anything about gut irritation. Is that normal? Did anyone else have it, and did it go away eventually? I should probably point out that I did not take my normal evening dose of Imodium because I thought it might not be a good idea to mix it with the LDN. Should I add it back, you think? For now? I sooooo want this medication to work, and I don't want to give up on it until I've given it a fair trial. Just need to mitigate these effects in the meantime.... Definitely planning on taking a sleep med tonight.

Thanks, all!!

Lucy

[mzh]

FWIW, I'm currently taking both Entocort and LDN because I took neither during recovery from knee surgery. When my gut calms down completely after that fiasco I'll go off the Entocort. LDN has very few interactions, other than than with opiods. So, I suggest you continue with the Imodium if it works for you.

[Lucy_B]

Thanks, MZH! I guess I was concerned because Imodium operates by opiate receptors. I don't know if it's technically in an "opiate", but I've read it can be contraindicated with LDN, at least if they are taken at the exact same time. I think I will try moving my evening dose up to the afternoon. I doubt it's dangerous – I've just heard mixed reports about how it impacts the effectiveness of both drugs to take them simultaneously. I didn't realize you could use Entocort and LDN together! Do they not cancel each other out, lol? Glad it's working for you, at any rate! Whatever does the trick. :) If LDN doesn't help me after a few weeks (or however long it's supposed to take), then I'm moving on to Entocort.

[Zizzle]

You can take LDN with as much as 10 mgs prednisone (I did), so I bet it's fine with Entocort. Regarding timing, I take the pill the moment before I put my head down to sleep. Any earlier and it might delay my ability to fall asleep. I tried morning dosing a couple of times and I felt totally off -- altered with some brain fog. But daytime dosing does work for others. What filler did you get in your capsules? Lactose is sometimes the default. I use Avicel (celluose), which is becoming the new standard.

I do notice it usually makes me wake up to pee, almost exactly two hours after I take it. I think it has diuretic qualities because I never feel bloated, even at PMS time.

I did have some tummy trouble with it early on. Nothing major but some gurgling and discomfort. No issues now.

I would look into any contraindications of taking sleeping pills with LDN.

[Lucy_B]

Thanks, Zizzle! I was told the filler was cellulose with no other additives, so hopefully it's fine. Glad to know I'm not the only one with the tummy issues, lol. I really do want to stick this one out. The medication I have for sleep is a super low dose of Trazodone (25 mg.). I've also used Ambien in the past, but not recently. I can't find any contraindications for either of these (and I don't think either works on opiate receptors). But if you're aware of any info the contrary, please let me know! ;)

Lucy