low dose naltrexone

Marigold, I highly recommend doing a search on the board here for naltrexone Lyme or LDN Lyme. We have had a lot of threads about this in the past. It did not work for me but it definitely works for some people!

Marigold,
I started on LDN in December. After being sick for three years all any of the doctors could come up with is that I had something auto-immune. LDN has been shown to help many auto-immune diseases so I figured it was worth a try. I started on 1.5mg for 1 month. I definitely had a issues with my sleep for the first week or so. I then went up to 3mg for 1 month. Again, I had issues sleeping for about 1 week after the increase. After 1 month of 3mg I was increased to 4mg, which I am currently on, and again, for about 1 week after the increase I had trouble sleeping but then went away. I should add that since my Lyme symptoms started my sleep has been horrible so adding in the LDN made me dread going to bed when I was making the increases. I knew I was in for a long night. My ND has also started me on Seriphos to help with my sleep and I must say it is AMAZING!! It has been a life saver! I have had so many changes with my treatment in the past 3-4 months so it is hard for me to say if the LDN is really helping. When I first started on it I did notice an immediate boost in my energy but that didn’t last long.

What has been difficult for me is I don’t have a local Dr. prescribing for me. I found a Dr. in NYC, who does phone consults, to prescribe for me. With all of the research I did on LDN I found that if you start to feel good but then start feeling worse again, that is a sign you are supposed to decrease your dose for a little while, NOT increase. Most think that would be a sign you aren’t taking enough and increase the dose but actually you are supposed to decrease. I did contact my Dr back in February to see if he wanted me to decrease the dose but he told me to continue with treatment as he had previously prescribed, which at that time meant I had to increase from 3mg to the 4mg. I also read that research has shown that the correct dose to treat Lyme is 4.5mg. Now that I am also being treated for Lyme I thought I would ask my Dr. to see if he wanted to increase me to 4.5mg. He said no, wants me to stay at 4mg, but like I said before, I really don’t know if it is helping. I am curious tho if increasing my dose, even just by 0.5mg, would make a difference.

Hey Sarah and Girlie, thanks! I had done a search but didn't find such good threads as the ones Girlie offered... awesome, thank you.

Jill thanks for the account of your experience with LDN.. Very interesting. Did you find a way to manage the insomnia weeks? It feels like a totally different kind of insomnia than I've had before somehow. Like I'm not hyped up or thinking about stuff.. Just dazed and awake. And then when I have slept it's been weird... Last night I had a dream that I was in a fight and in my sleep I punched my lamp off my bedside table! It's the first time in my life I've ever punched anything!! lol Daytime I'm a zombie, and like Greenblue I really don't want to get my sleep schedule all messed up again.

My doctor suggested taking the medication earlier, but I'm unclear as to whether that would have an affect on the insomnia! And I'm pretty sure it would decrease the benefits of the medication, since it seems important to time it to activate in the pre-dawn hours.

I'm also just wary of all medication and wish I could do this completely au natural. But I'm trying to give myself permission to accept I'm ill and could benefit from the support of it. The combo of my doctor wanting me to try it and the Dr. H webinar made we want to give it a shot.

Hi Marigold,

I'm on LDN too. Have been for a year now (with a break due to circumstances, not caused by a lack of results).

I have to say that I'm really happy my dr prescribed it. I couldn't stand the pains anymore, told him, and he suggested LDN.
I have to say that my story is a success story. Right after the first 0,5mg, I felt a huge difference in muscle pains. No sleep issues at all.
It doesn't help with the headaches though, and it took a while to help with the joint pain.

I hope this helps,
Marie

My sister is having nightmares since starting LDN, but she switched to taking it in the morning. Much better now. That's why our dr prescribes taking it in the morning. (I take it at night cause he forgot to add the instructions when I started, and since it's not bothering me I'm continuing like that).

How is it going w/ the LDN?

I had a rough time when I started taking it. A tough 4 wks then I finally got past that stage and once I had relief, I slowly started to increase doses .mg every 4 wks. But each time I increased dosage, the agitation, insomnia, increased pain and stimulation, jitteriness, jerkiness, spasms… all came back, then they would subside. I've been at 4.5 mg for nearly a year and I feel like I need to keep increasing. My gastro/integrative MD says I can go higher… we'll see.

p

So sorry…
Yes, I have had generally really great results w/ the LDN! Say, 3 wks out of every month that I was stepping up the dose was good, 2 of those weeks were great. And once I hit 4.5 mg I did really well for a good 6 or 7 months. But I only knew that for sure in retrospect. While I was building up to my max dose, I wasn't sure it was working.

I really don't know what I would have done w/out it. I was experiencing some really crazy nights and a lot of pain and discomfort.

However, now I am worried I have maxed out on it but very grateful I've had it the past year. My gastro/integrative MD thinks I can still safely increase the dose and I am ready to do it. So far, my research hasn't revealed any major risk in slightly higher doses.

For the low cost, the value and the successful results once you get to the right dose, I can't live without it. When I started experiencing heart problems in Feb, I stopped my entire complicated treatment program except the abx, my thyroid meds and LDN.

Good luck!

p

This is interesting... i did a year long research study with this drug added to percocet (i normally take Vicodin). I had a horrible accident years ago which resulted in a condition called "traumatic spondylolisthesis"... and my pain mgmt Doc asked me (because he knows that i hate taking narcotics...but can't stand upright without them) if i would like to do this study... where the naltrexone hinders someone from using pain medication in an unauthorized manner (crushing or whatever else they do).
The study was intended to reduce the street sales and abuse of narcotics. The naltrexone renders the narcotic useless if tampered with.

I had some horrible side effects... which i attributed to the percocet... but now i am realizing that it was most likely the naltrexone (which i thought was a harmless additive... silly me).

*I just looked up symptoms in case anyone may find this helpful (knowing what may happen ahead of time).

www.webmd.com/drugs/2/drug-7399/naltrexone-oral/details#side-effects

Pirouette, I am currently paying like $35/month... Is that your price?
I think I'm going to stick with it. I really appreciate everyone weighing in. I'm excited to get to the right dosage and maybe see some results.
In the meantime, I believe all the side-effects of dosage one have subsided. No more punching furniture in my sleep lol

I'm planning on seeing LLND Dr. C in Vancouver. Does anyone know if he scrips LDN?

awesome, thanks... I do have sleep issues, hopefully I can figure this out..

Thank you for posting on this. I had have some consultation with a LLPA in another city. She suggested that I try this. She has me taking supplements such as ALA and NAC, and I have had the Myers Cocktail and heavy metal testing at their facility. I keep both informed of the others suggestion so that we are on the same page. However, I have not brought this up with my local doctor, it just seems a bit daunting. Does it really help? or does it cover the symptoms?

I have joint pain all night long and would love to be rid of it! I hate to think I wouldn't sleep. I'd love to hear more success stories with this. Thanks!