posted
Greetings, i'm looking for any experiences with taking LDN good and bad, i know this is a fairly new treatment for lyme and not many are taking it. I can't seem to take it and i don't know why. Dr H put me on 2 mg at night which is the lowest dose, and i've tried 3 different times to ttake it.I don't know if it's a huge herx or a reaction of some kind. The 3 separate times i've tried it i took it for at least 2 nights and about 2 to 3 hours after taking it i'm woken up by bad pains in my chest, feels like tightening that comes and goes, i also have been getting nerve pains here and there around my body. The chest pain seems to be relieved if i sit straight up, almost leaning forward, but i cannot sleep that way, so i get no sleep. Eventually it does stop, but it will last for a couple of hours. I've even tried taking it during the day, but it makes me sleepy which makes it difficult to function, let alone take care of an 8 month old. So i really don't know what to do, i have an appointmnet next week so i will talk to the doc then, but it's frustrating because i really want to take it, i've heard some good things about it. Any advice anyone? For those of you who have taken it, did it cause a herx? Thank you Deanne
Posts: 163 | From maine | Registered: Oct 2003
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posted
I started (and am on), 2mg also. At first it caused insomnia, but I stuck it out this time, and that subsided. Never any other symptoms as you describe. I'm going to go to 3 mg my next appoint.
You could stop just until your next appoint, so you could discuss it with him.
Maybe someone else has had other symptoms, and can help better than me. Good luck!
Posts: 847 | From upstateNY | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I had same experience while taking doing abx treatment.
I took it for 2yrs at 4.5mg prior to being dxd Lyme and didn't have any problem. Then wham while on abxs I too thought I was dying.
Do a search here - "search" is above under the "post a poll" and next to the "post new topic" there are a few older posts on LDN or low dose naltrexone.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I started this week. Did 4.5 mg the first night and have opened the tablets the last 3 nights and taken half. So far no problems.
it is supposed to work wonders on your immune system.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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I started LDN about 3 1/2 mo ago. My doc started me at 1.5 mg for 1 month, then up to 3 mg for a month and then 4.5 mg. I had a little insomnia and vivid dreams the first week. And each time I increased my dose I would have a small reaction to it for a day or so. (insomnia & vivid dreams.) Also had a sence of wellbeing almost right away.
I also started Serracor-NK, at the same time, which is a systematic emysine, blood thiner type thing. (I'm not good at explaining things) So I am not sure which was helping, maybe both. I have had alot of improvement on LDN, and also high hopes in it. Mind over matter?
I started getting night sweats and flares every 6th or 7th day. Some one told me maybe the LDN woke up the babs? So my doc is starting me on mepron and Flagel. I am scared to start the mepron.
My understanding of LDN, is it regulates the immune system, so.... it works better, so my body kills more bugs. My guess you might be haveing a herx reaction, but ask your doc, cause yours sounds extreme. I have been treated for Lyme for 5 yrs, lots of ABX, so my germ load is or should be down alot.
Some where I read that some people with Lyme have a hard time on LDN, and don't do well on it at first, and need to be treated with ABX for awhile and then try LDN again after the germ load is down.
lr26, i've been treated for lyme and coinfections since fall of 2003, so one would think that my germ load would be down but who knows, maybe not. I had a baby 8 months ago and things have been difficult since then lyme wise, so maybe that has a lot to do with it, maybe my germ load is high right now, my LLMD started me on omnicef a few weeks ago and i have not been able to get up to twice a day because of bad herxing. So maybe i should try LDN again later, i will talk to my doc next week, thanks again, deanne
Posts: 163 | From maine | Registered: Oct 2003
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posted
I took 2 mg. LDN to start. I decided to take it during the day, to avoid the side effects. It caused extreme drowsiness, nausea and chest tightening (like you). I was also not yet stable from uping my Mepron dosage, so, I stopped the medication.
After evening off from the Mepron, started at night with the LDN again, 2 mg., and have had no problems. I actually feel it is really helping my immune system.
I wouldn't add LDN until you are tolerating your abx well. Then, try it again at night. You might be similar to me, in that it makes us sleepy, rather than have insomnia.
With an 8 month old, you have to get your sleep!
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Thank you Nspiker, i am going to try it again later when i feel better,hopefully i'll have good luck like you!
Posts: 163 | From maine | Registered: Oct 2003
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