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Posted 8/27/2018 10:49 PM (GMT 0)
I started LDN 1.5mg on Saturday night. Sunday, I woke up with a terrible migraine and felt extremely fatigued (fluish) all day.. so Sunday night I backed down to .75mg and still feel horrible. I have bad headaches and really bad fatigue.

Is this normal when starting LDN?

I see a lot about how LDN helps with autoimmune disorders, but how does it help Lyme? Modulate the immune system which causes it to finally start clearing lyme and co's?
Posted 8/27/2018 11:01 PM (GMT 0)
The way the LDN works is it blocks the opioid receptors in the early morning hours which produces an up-regulation of the immune system...which in turn results in an increase in endorphins and enkephalins.


I tried it in 2013 before I knew I had lyme...I though it might help with my daily pain.
It didn't work for me. I ended up getting pain waking me up at night after I started taking it.

I may have increased the dose too fast....perhaps.

Here's the (rudimentary) website where I first read about LDN:

www.lowdosenaltrexone.org/index.htm#How_does_LDN_work_
Posted 8/27/2018 11:32 PM (GMT 0)
For me, LDN (1.5mg before bed) had interesting results:

- improved my morale by a lot. Prior to LDN, I was going downhill mentally, because of my situation with lyme.
- Improved my sleep. In my LLMD notes, it was mentionned that the first week on LDN may lead to sleep issues. Except for one or two exceptions, I’ve been s’eeping like a baby since starting the medication.

I’ve heard about the immune aspect of LND, but I don’t quite understand how its supposed to help in that regard.
Posted 8/28/2018 1:18 AM (GMT 0)
I'm sorry to hear it has been a rough go initially.

I think it's a hit of miss med like a lot of this stuff. But it seems like one of those things you want to give a good week to see how it shakes out. Sometimes there are initial hiccups but then one sees stabilization and improvement.

I'd also like to learn how exactly it helps the immune system in regards to lyme/coinfections. That has never been properly explained to me.
Posted 8/28/2018 12:52 PM (GMT 0)
My llmd started me at 2mg. My sleep got worse and my head pressure increased. I didn't like it at all, so I quit taking it after a week. I read most people start at a much lower dose. After 2 months I tried again at 1mg and have been on it almost a year now (holding steady at 2mg).
Posted 8/28/2018 7:22 PM (GMT 0)
Never did anything for me
Posted 8/28/2018 8:25 PM (GMT 0)
I have just started ldn and upset stomach is all i experienced so far.
Posted 8/28/2018 8:28 PM (GMT 0)
I'm taking ldn for autoimmune symptoms.
Posted 8/28/2018 10:17 PM (GMT 0)
I have no idea what’s going on.. I’m getting really bad dizziness and I literally cannot focus on anything. I feel so terrible..

Although I did also start biaxin up again about a week ago.. so maybe that’s hitting something hard??
Posted 8/28/2018 11:45 PM (GMT 0)

NicHostetler said...
I have no idea what’s going on.. I’m getting really bad dizziness and I literally cannot focus on anything. I feel so terrible..

Although I did also start biaxin up again about a week ago.. so maybe that’s hitting something hard??

Maybe back off the LDN for a bit until you follow up with your doc? Those symptoms seem pretty intense
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