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Posted 10/29/2018 10:13 PM (GMT 0)
Oddly, the first time I tried it nothing happened. Then I started seeing a new doctor and he wanted me to try it again but from the pharmacy he trusts and uses. Now it helps my joint pain and energy. Maybe there are different qualities available? The new pharmacy I’m using is much more cost effective too. Win win!
Posted 10/30/2018 12:03 PM (GMT 0)
Can I ask what pharmacy you get it from?
Posted 10/30/2018 2:05 PM (GMT 0)
I also just started LDN. My LLMD stated 3mg for 1st 30 days then go up to 4mg. Hopkington Drug gave me 4mg capsules. So rather than guess dosage I started at the full 4mg. So far OK, with no significant reactions... good or bad, after two weeks.
Posted 10/30/2018 2:58 PM (GMT 0)
I took 3 mg last night for the first time in a while. I started it back. I was awake at like 3 am drenched in sweat and very restless. Thinking I might need to start at a lower dose again. LOL.
Posted 10/31/2018 6:10 PM (GMT 0)

NicHostetler said...
Can I ask what pharmacy you get it from?

It’s called belmar pharmacy they are in Colorado. I live in Washington so they ship it to me.
Posted 10/31/2018 6:14 PM (GMT 0)
I think I am switching to Belmar in January. I’ve heard theirs is much cheaper than Skip’s.
Posted 10/31/2018 7:38 PM (GMT 0)

MA10 said...
I think I am switching to Belmar in January. I’ve heard theirs is much cheaper than Skip’s.

The first pharmacy I tried was a local compounding pharmacy here in Portland. They only made LDN in troches and they were very expensive. Ive never had much success with anything in troche form. I’m paying about the same now at belmar but instead I get a 90 day supply of small pills!
Posted 11/1/2018 10:50 AM (GMT 0)
I use to get my LDN from Belmar Pharmacy but they no longer ship to North Carolina. I now use CareFirst Rx Specialty Pharmacy in Cinnaminson, NJ. They are the same cost as Belmar-$53 for 90 days with free shipping.
Posted 11/1/2018 2:32 PM (GMT 0)
That’s WAY cheaper than Skip’s. Dang. Lol. I paid $45 for a 30 day supply. Granted, I take 1.5 mg 2x/day. So there were more pills. But still. That’s steep.
Posted 11/6/2018 7:15 PM (GMT 0)
I started out with 1.5 mg at bedtime but it was keeping me up. I mentioned it to my LLMD to see if I could take it in the morning instead. He said not to bother taking it at all if it was interfering with my sleep.

Has anybody else been down this road? I think I read somewhere that it supposedly works better when taken at bedtime due to certain things happening/or not happening while we sleep???? Any advice? Thanks
Posted 11/6/2018 7:32 PM (GMT 0)

DiggerRudy said...
I started out with 1.5 mg at bedtime but it was keeping me up. I mentioned it to my LLMD to see if I could take it in the morning instead. He said not to bother taking it at all if it was interfering with my sleep.

Has anybody else been down this road? I think I read somewhere that it supposedly works better when taken at bedtime due to certain things happening/or not happening while we sleep???? Any advice? Thanks

It is supposed to be taken at night...but if that is keeping you up...then you can try taking it in the morning.

"The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days. "

http://www.lowdosenaltrexone.org/index.htm#how_does_ldn_work_


On that same website there is also a list of Pharmacies for the LDN. I don't know if the website is updated frequently though...
Posted 11/6/2018 7:48 PM (GMT 0)
Thanks Girlie. My LLMD was pretty indifferent about LDN in general after I brought up that it was interfering with sleep. Will I still get benefit from LDN if I take in the morning you think? (I'm on so many meds and supplements it seems that it's awfully hard to know which ones are helping and which ones aren't).
Posted 11/6/2018 8:19 PM (GMT 0)

DiggerRudy said...
Thanks Girlie. My LLMD was pretty indifferent about LDN in general after I brought up that it was interfering with sleep. Will I still get benefit from LDN if I take in the morning you think? (I'm on so many meds and supplements it seems that it's awfully hard to know which ones are helping and which ones aren't).

from the website:
"For an adult who is not significantly below the normal weight range, the optimal dose of LDN is 4.5mg, taken each night at bedtime; i.e., between 9pm and 3am. One can begin at this dose level. If one were to develop persistent sleep disturbance (i.e., a sleep disturbance lasting longer than 10 to 14 days) after starting LDN, which occurs in less than 2% of users, then the dose may be decreased to 3mg or 2mg."

So sleep issues could go on for 10-14 days....


** Also, I read on the website that you need to confirm that they are NOT doing the time released form. **

What time are you taking it? Right before bed?
If you go to bed at 11:00 (for example) - wonder if it would make a difference taking it around 8:00 p.m.
Posted 11/6/2018 8:54 PM (GMT 0)
Thanks Girlie. Hmmmmm....I started at 1.5mg for about a month taking it about an hour before falling asleep. After the month I was supposed to go up to 4.5 mg (I think) but was still having difficulty sleeping. I was very restless and was just constantly tossing and turning. That's when I contacted my llmd and he was like just quit taking it if it interferes.

That being said....I have sleep apnea and wear CPAP and am overweight (but starting to lose some pounds actually!) and have had a long long history of sleep problems. And Lyme has definitely made it worse. So I'd say that I'm definitely pretty sensitive when it comes to sleep. And I'm probably a little gun shy about not getting decent sleep because it seems to really make me feel a lot worse the next day.

Basically, I really want the benefit of LDN if at all possible but not sure my body/makeup is cut out for it.
Posted 11/6/2018 9:01 PM (GMT 0)

DiggerRudy said...
Thanks Girlie. Hmmmmm....I started at 1.5mg for about a month taking it about an hour before falling asleep. After the month I was supposed to go up to 4.5 mg (I think) but was still having difficulty sleeping. I was very restless and was just constantly tossing and turning. That's when I contacted my llmd and he was like just quit taking it if it interferes.

That being said....I have sleep apnea and wear CPAP and am overweight (but starting to lose some pounds actually!) and have had a long long history of sleep problems. And Lyme has definitely made it worse. So I'd say that I'm definitely pretty sensitive when it comes to sleep. And I'm probably a little gun shy about not getting decent sleep because it seems to really make me feel a lot worse the next day.

Basically, I really want the benefit of LDN if at all possible but not sure my body/makeup is cut out for it.

So you had trouble sleeping even at the 1.5 mg dose?
If you do try it again...stay longer on that dose maybe? and then go to 3 mg.
Posted 11/6/2018 10:53 PM (GMT 0)

Girlie said...

DiggerRudy said...
Thanks Girlie. Hmmmmm....I started at 1.5mg for about a month taking it about an hour before falling asleep. After the month I was supposed to go up to 4.5 mg (I think) but was still having difficulty sleeping. I was very restless and was just constantly tossing and turning. That's when I contacted my llmd and he was like just quit taking it if it interferes.

That being said....I have sleep apnea and wear CPAP and am overweight (but starting to lose some pounds actually!) and have had a long long history of sleep problems. And Lyme has definitely made it worse. So I'd say that I'm definitely pretty sensitive when it comes to sleep. And I'm probably a little gun shy about not getting decent sleep because it seems to really make me feel a lot worse the next day.

Basically, I really want the benefit of LDN if at all possible but not sure my body/makeup is cut out for it.

So you had trouble sleeping even at the 1.5 mg dose?
If you do try it again...stay longer on that dose maybe? and then go to 3 mg.

Yes, I never got above the 1.5 dose. I think I may try to work it in again at some point. It sounds like it really has some good restorative qualities to it. Thanks guys. This forum is great!
Posted 11/6/2018 11:11 PM (GMT 0)
Hi Digger I’m not sure if you’re interested in adding in another medication but I take the LDN but I also take 50Mg of Amitriptyline which helps with sleep as well as helps nerve pain. I’ve been on the 4.5mg of LDN for a few weeks now and I do seems extremely improvements pain wise. I really want to stick with it because like you said it has some great restorative qualities. Good luck
Posted 11/6/2018 11:51 PM (GMT 0)
Hey Hearts- Thanks for that suggestion. I’ll look into it.
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