Just started LDN after years of Lyme treatment with antibiotics (85%) improved in hopes of clearing up lingering CMV virus and few remaining symptoms (heart arrhythmia, weak adrenals, occasional spells, GI problems).
Would like feedback on following:
1. How long have you been on LDN?
2. Any improvement?
3. Side effects?
4. Do you take with or without antibiotics?
Thank you!
Posted by miapiaface (Member # 31679) on :
Up
Posted by sammy (Member # 13952) on :
1. I've been taking LDN for about 3 yrs 2. Helps with general pain and inflammation, hope it helps with immune support. 3. No side effects. 4. Have been taking it with antibiotics.
Posted by bcb1200 (Member # 25745) on :
1. About 14 months (4.5 mg / night) 2. More energy, normal feeling. 3. no side effects 4. With antibiotics.
Posted by fatigued15 (Member # 6437) on :
2 years 4.5 at bedtime helps with sleep, hoping it helps my immune system no side effects with abx
Posted by karenl (Member # 17753) on :
1. 9 months 2. feel somehow better 3. no side effects except first week 4. with abx and without
Posted by Myco (Member # 9536) on :
Anyone else?
Would love more numbers if you are out there. My first week I have experienced some nausea, a few strange spells, sleep is ok, good energy. Not presently on antibiotics because I am giving myself a break after 4 yrs on and off to see how I do.
Posted by karenl (Member # 17753) on :
I was hoping to hear from more Lyme patients. Very few on LDN Yahoo Groups.
Posted by faithful777 (Member # 22872) on :
Did LDN for 6 months with no improvement at all.
Posted by Lauralyme (Member # 15021) on :
Would LDN throw off an Igenex test?
Posted by baileypup (Member # 22824) on :
!. Over a year 2. Higher CD57, much improved, increased immune system 3. Start at lower dose like 1.5 or 2 - takes your body a while to adjust. 4. On heavy antibiotics
Posted by Myco (Member # 9536) on :
Thanks, this is helpful.
Posted by Myco (Member # 9536) on :
Anyone know if their viral titers (CMV, HHV-6, EBV) went to normal after starting LDN?
Posted by lr26 (Member # 7437) on :
Hi myco, 1. 1 yr 6 mo 2. improved sence of wellbeing, sleep and less pain. LLNP said it has really help adrenals, adrenal function normal now! 3. no, fist week vivid dreams 4. with ABX
lr
Posted by j_liz (Member # 20496) on :
I have been taking it for a few mos or more.
I started at 2mg and worked up to 4.5mg, I had insomnia for a few wks. (The 1st time I took it I had insomnia for 6 wks. and gave up.) That was the only side effect.
I take too many things to know if it helped with my improvement, but I have improved during this time.
I take it w/o abx, but did abx for 3 yrs. Stopped abx March 2011.
liz
Posted by Fuel1212 (Member # 29312) on :
I took it for a about 4 months... Did not notice too much difference except my sleep is always disturbed. Takes me at least 2 weeks to get decent sleep on it.
For me, sleep is too important and I have stopped for now. I do have a full Rx at home so when I am ready I may start again.
Posted by Myco (Member # 9536) on :
I started with 4.5mg at bedtime. Going on two weeks now and notice minor headache in the AM, frequent waking, more energy, less twitching. Also some fatigue that comes on late afternoon.
Posted by CountryMouse (Member # 32073) on :
1. How long have you been on LDN? 4 months
2. Any improvement? I take it first for Crohns and Hashimotos thyroiditis, put me into remission for both. Now hoping it will help Lyme and PSC with time.
3. Side effects? Hard to settle to sleep for first few weeks, nothing else.
4. Do you take with or without antibiotics? Right now with ABs.
Posted by lightfoot (Member # 2536) on :
1. How long have you been on LDN? June 6 - began 1.5 second week - 3.0 third week to 4.5 to present
2. Any improvement? Actually I can't believe it! I bounce out of bed with energy and a brighter attitude. I would say I can do at least 50% more in any day. Cognitive also seems better besides being more alert. Not sure about reduction of pain.....I want more time before I comment on that.
One of the reasons for trying it was to modify sleep patterns. There is some progress in that area - I'm hoping for more as I go along.
3. Side effects? None that I have detected.
4. Do you take with or without antibiotics? Bsctrim Septra 3 per day - recently did a two week stint of Cipro with no noticeable difference.
Posted by Satya (Member # 30218) on :
1. How long have you been on LDN? 2 months and just recently stopped taking it
2. Any improvement? No, at least not that I was aware of.
3. Side effects? Insomnia, bad stomach pains, stomach swelling, elevated liver enzymes (probably because of drug interactions with others I was on.)
4. Do you take with or without antibiotics? I took it with Doxy, Flagyl, Plaquenil, Rifampin, and Augmentin. I was also on Cymbalta, Neurontin, Ativan, baby aspirin and Diflucan, all drugs which may react with it. Rifampin and Augmentin are also possible reactants.
Based on my own experience, would NOT recommend LDN, however it seems to have helped others in this thread.
[ 07-31-2011, 10:32 PM: Message edited by: Satya ]
Posted by AnnaOD20 (Member # 29942) on :
1. Started it a couple of weeks ago (3.5)
2. Hard to tell yet, but I am hopeful!
3. I have vivid dreams and will wake up from a sound sleep for no apparent reason, but can fall back asleep soon after.
4. Taking it w/out abx. Stopped abx in June and my CD57 dropped (my LLNP thinks that may be due to the IV chelation I did and not because of stopping abx...but don't know for sure) so prescribed LDN to get my immune system back up and running. I retest my CD57 this week and hope it is on its way back up!
Posted by ktkdommer (Member # 29020) on :
I am so glad you started this post. I am being a chicken and not trying LDN again. I took it before my Lyme diagnosis for what was supposed to be lupus. I was on plaquenil, no antibiotics. I had to stop because the fatigue was profound and I was working full time. My hands and body ached a lot.
Now I am going to try it again and take it slow. I will be on 3 antibiotics with it.
Ideally I would like my sickest child to start it, too. My new insurance covers compounded medicines- yeah!
Posted by Healing in Santa Cruz (Member # 7798) on :
I had the same hellish reaction that Stillwater's wife had. Docs think Tramadol is not an opoid or addictive. WRONG. Be careful everyone if ur on it and want to do LDN
Glad she had you to support her Stillwater.
I did searches on google and there r support groups for Tram addiction and peeps that had the same experience with Tram and LDN that I did.
Posted by smckibben (Member # 27878) on :
I too had a really bad reaction to Tramadol and LDN. I decided if this is what withdrawals are like I don't want anything to do with them. So I weaned myself off the Tram....waited about a month and then started on the LDN with some coaxing from my dr. I must say...after suffering with Lyme for over a year and chronic back and hip pain for over 20 yrs, LDN has greatly improved my pain. Only taking an Aleve once in a while. No side effects. I'm happy!! Hope this helps someone.
Posted by Satya (Member # 30218) on :
I just talked to my psychiatrist today and she said that the reason Naltrexone is used to treat opoid addicts is because it blocks the pain relief sensation and that it may also block other pain medications. Be aware of this before starting!
Posted by ktkdommer (Member # 29020) on :
I'm updating my information to started last night with 1.5. No problems so far.
Posted by nefferdun (Member # 20157) on :
This drug intrigues me. I am going to ask for a script for it next week. Does anyone get the sublingual liquid form so you can adjust your dose in the beginning? I need to start very low, like 1 mg because I am prone to insomnia.
I never knew how endorphins affect the immune system. No wonder I am sick!! I stress all the time over one thing or another. It is wired into my personality to be looking for something to fix.
When I was undiagnosed I was dancing two days a week - a lot of aerobic activity which boosts endorphins. While I was doing this I was not as sick.
My son has LADA, latent onset type one diabetes in adults. He is controlling it with diet but the expectation is he will lose all of his beta cells without some kind of intervention.
I read Dr. Bahiri, who discovered LDN's ability to boost the immune system (being particularly helpful in autoimmune diseases), had 6 diabetic patients and they all were in remission.
Very exciting discovery.
Posted by j_liz (Member # 20496) on :
I don't get the liquid, but your dr. can write it for 1 mg. Mine started me at 2.
liz
Posted by faithful777 (Member # 22872) on :
Did LDN for 6 months. Some improvement with sleep but that is all. Had severe migraines when I started and stopped using it.
Posted by Amanda (Member # 14107) on :
1. How long have you been on LDN?
Was on it twice 4 weeks each time, had to stop
2. Any improvement?
immune cell counts went down (already a problem for me)
3. Side effects?
First few days, fine. Then horrific insomnia, anxiety, headaches. Started out at 2 mg first time, then took month to recover, then 1 mg every other day, still had terrible insomnia. One of the more difficult drugs for me to take so far (and I have take a lot of hard core drugs)
4. Do you take with or without antibiotics? took with abx
Posted by nefferdun (Member # 20157) on :
Insomnia is what scares me. That is why I want to be able to take the smallest amount possible to start and build up tolerance. If it is compounded in liquid form, I can do that. . . . For instance, if ten ml had 3.5 mg, taking 2 ml would only be .7 mg. When I got used to that I would take 5 ml etc.
I am of course changing the topic with my comments but I need the information. Insomnia is the biggest complaint. Perhaps it is triggering an attack on bartonella which makes the insomnia worse.
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