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Posted 3/10/2014 2:16 PM (GMT 0)
My LLMD prescribed LDN for my Lyme symptoms. The first two nights I took the prescribed 4.5 mg. and very quickly had side effects- sleeplessness, which I expected, Sharp shooting pains in muscles and joints, muscle tension, tingling in face and arms. I dropped to 2.25 mg. on the third night with less side effects but still felt worse than before I started. Last night I took 1.1 mg. I did not have the pain or sleeplessness but did have the muscle tension and feeling exhausted. Also, I am noticing a slight return of hand tremors and dropping things more. I am wondering if these side effects are normal, if I should stick this out and give it a chance to work or if I should quit taking the LDN since I am feeling worse? Does anyone else have a similar experience.
Posted 3/10/2014 7:01 PM (GMT 0)
Hi there...I'm on LDN 4.5mg and the only side effect I have are vivid dreams and wanting to sleep (which is why I take it at night). It's supposed to calm your neyo problems down...not stir them up. Hmmm...have you called your doctor back? Also was is custom compounded?
Posted 3/10/2014 8:52 PM (GMT 0)
Yeah I've been on it since June and I sleep so soundly and not dragging when I get out of the bed in the morning. I'm with LearnLyme...the side effects don't sound like LDN.
Posted 10/13/2014 9:39 PM (GMT 0)
I was doing fairly well with my Lyme and coinfection's. The Babesia symptoms seemed to be more of the culprit at the time, so I went to my LL M.D. I was continuing to have heart palpitations and such. after testing, my immune system was tanked. The levels were 2.8, normal being 4.0 to 10.0. He prescribed LDN. I stopped right thing and decided to only do the L a D in to get an accurate assessment of what it was doing. I started on a 1.5 dosage for three nights. I seemed to have a die off that kept me in bed for a day. Took a two day break and resumed the 3.0 mg for a day or two and felt okay. Sunday night I ramped it up to three pills. (4.5) within an hour, I started having a few heart palpitations, tingling all through my arms, my face went numb, I couldn't talk or communicate, I was fearful and scared of everything, I could feel it going down my spine, I had to "think" about how to use my arms! It was so insanely scary. It was attacking my central nervous system. The next morning, my thoughts were still strange, I was exhausted all day, and felt many tingling and muscle sensations. I took a four day break. Then started on a 1.5 mg pill again. I had the same reaction but on a lower scale. Remember during this time I am doing no other treatments. This was so we a reaction from the LDN. I have yet to find anyone with such a strong reaction. My plausible guess is the immune system was activated and killing things in my central nervous system and apparently my brain! I am still baffled. Has anyone experienced anything g like this? Lyme, Babesia, and Coxsackie show up on my MSA.
Posted 10/13/2014 9:40 PM (GMT 0)
What is LDN?
Posted 10/13/2014 10:53 PM (GMT 0)
When I tried it, I read that you should start at a low dose and after a week, increase. Maybe try that.

I have to say, though, that it didn't help me. When I was on it, I felt pain at night that woke me up...something I didn't have prior.

I tried it, because it looked promising...disappointed that it didn't.
Posted 10/14/2014 12:43 AM (GMT 0)
I get a lot of help out of it... I couldn't stand the pains anymore, and painmeds (all kinds of, from normal to very strong) didn't help me. I thought I was slowly going crazy because of the constant pain.
I guard that box of Naltrexone with my life :-)

You built that up very quickly though, Moomishgirl... I did it much more slowly, went with when my body told me when I needed more. Took me 3 months to go to 4,5mg.
That regimen, was that prescribed by your dr, building up the dosage so fast?

I didn't experience any side effects though... And it worked very quickly, I felt a huge difference after only one night on it...

There are a few interesting Facebook groups about LDN. Maybe you could join them if you are on FB?? 'LDN Research Trust', or 'Got Endorphines? LDN' are a few of them.
You could post there and see if someone can help you?

MarieLS
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