LDN - how's it working for you?

I've been on LDN for...


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EMilo

Elizabethmilo.com
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I've been taking it for a few months at 4.5mg. Effects not all neg but over time I got wose and worse. Now I stopped it and already doing better. Will start with very low dose soon. Probably only small window that works.
I got worse and worse, too, and was only taking 1.5mg. I stopped sleeping for a month.

My blog was originally created to post my LDN results. If anyone is interested, you can read from the first post (the first day I took LDN): elizabethmilo.com
 
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Can one stop LDN at once? I don't know why but I feel like is not doing anything so I want to stop all unnecessary pills.
 

Marlène

Senior Member
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I got worse and worse, too, and was only taking 1.5mg. I stopped sleeping for a month.

My blog was originally created to post my LDN results. If anyone is interested, you can read from the first post (the first day I took LDN): elizabethmilo.com
Hello elisabeth

I started at 0,5 mg and it was unbearable. I had to go back to 0,25 mg for 4 weeks and then slowly increase. It took me over a year to increase over 1,5 mg.
Don't hesitate to stop for a month and try again at 0,25 mg. LDN is very powerful for ME and Lyme-patients.

The first six months were very very difficult like a huge herxheimer but a lot of symptoms have disappeared and never came back. I'm at 4,5 mg now and my life has changed forever.

If it interrupts your sleep too much, you can consider a sleeping aid like stillnoct or 1-3 mg melatonine.

All the best
 

Clodomir

Where is the sun?
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Hi,

It doesn't do something for my insomnia, but for join pain, it is GREAT!
I am on 4,5 mg after 2/3 month.
It is a great improvment.
Now that I take some ABX for lyme, Sometimes I have ( at the end of the day) join pain, but before: nothing...

Have a nice day

Clodomir
 

OverTheHills

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LDN is a really big step forward for me. I've been taking it for a year now (when I had a couple of months break it was a nightmare). I find it gives me much better quality sleep though not necessarily better quantity, and I think that helps my memory quite a bit. Aches and pains gone completely and it has a subtle positive effect on mood (not that I was depressed before).
I take 3mg a day - more makes me sleepy during the daytime. I didn't have any problems when I started and I am extremely sensitive to many meds. It took a while to start working though maybe 3-6 weeks. The only thing I find is that I need to take the capsule form not a solution,the solution doesn't seem to work at all.
OTH
 

Charles555nc

Senior Member
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LDN has been wonderful for me (did develop aggressive rosacea and had to take a break+take benedryl). But then I reached a plateau in symptom reduction and I tried taking LDN twice a day (after praying to God for help), 12 hours apart and started having a strong herx again! I think there is a limit to your endorphin production though, so I only take it twice a day on the weekends, 12 hours apart (8am/8pm).

Anyone still trying/know of a doctor that treats XMRV with antiretrovirals, I couldnt tolerate them before but now I feel like I can!
 

undcvr

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On its own it didn't do anything much or noticeable for me but as as the icing on top of the other supplements I take it basically healed up my immune system and moved it away from being th2 dominant. I can say that I am functionally cured on ldn. I take supplements for mitochondria dysfunction and just about only ldn for my immune system.

I notice that the brand of ldn is a big deal. The best is Teva/Barr. Sometimes I can take the same 4.5mg of another brand and still feel like I need alittle more in the day but not with the Teva/Barr brand ldn. All generics are not created equal.
 

OverTheHills

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I notice that the brand of ldn is a big deal. The best is Teva/Barr. Sometimes I can take the same 4.5mg of another brand and still feel like I need alittle more in the day but not with the Teva/Barr brand ldn. All generics are not created equal.
Right now I am wondering whether the generics issue was the problem when I took LDN in solution which didn't work. So far the LDN from Marcos compounding pharmacy in Florida works great but the locally dispensed stuff doesn't. Does anyone know if a US pharmacy will take a NZ prescription?? I last saw a US doctor more than 1 year ago so they can't prescribe for me any more

OTH
 

undcvr

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i am interested in finding out if other pple here have had issues with the brand of ldn they use, anecdotally i know of 2 other pple, after switching away from the teva/barr brand, that their ldn stopped working. Now I think I am the 3rd cos i have to take 4mg in liquid form 12hr apart to get the same effect on this other brand.

anyone else anything similiar ?
 

undcvr

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Ok so I have access to the Teva/Barr LDN who some pple swear by and say that the other generic brands just don't work. If anyone is looking for it please PM me.
 

Thinktank

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I've tried LDN from 3 different sources.

Transdermal LDN - Didn't do a thing
Transdermal LDN from a Hong Kong source - didn't do a thing
Oral LDN 1.5mg from buyLDN.com - made in Italy if i'm right, this stuff did the trick but my gut was inflamed back then and was also on diflucan so the herx reaction was too much to bare. Had to stop the LDN after 5 days.
 

Lotus97

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I'm reading a book on Lyme by Dr. Horowitz. He seems to have great success using on Lyme patients:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3351864/
As for integrative pain therapies, Dr. Horowitz said that low-dose naltrexone (ReVia, Duramed) has proved effective in Crohn’s disease, multiple sclerosis, and fibromyalgia. In his open-label study of 500 patients with Lyme disease and MCIDS, approximately 75% of patients experienced less fatigue, myalgia, and arthralgia when the naltrexone dose was titrated to 4.5 mg at bedtime.
 

Ninan

Senior Member
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I started on 4,5 mg. Noticed effect the day after. More energy. It lasted for two months and then disappeard completely. When I tried to stop LDN I got extremely restless legs. Awful. Noticed LDN helped me, it takes it away in just 15-20 minutes. So now I use it a few times a week against RLS. Which got worse from using LDN in the first place. But even when I've taken it every night there is no difference.
 

Wally

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I don't think this has been posted on the Forum or perhaps it just did not come up when I searched for it. However, I thought people might be interested in viewing this interview with Lisa Elsegood (who is a MS patient) about her experience with LDN.


It is is a long interview, about 50 minutes. I found it to be a very interesting to listen to how she describes what it was like for her in dealing with her illness and the hope that comes from finding a treatment that gave her some of her life back, even if it was not a cure for her illness. I wonder if this treatment combined with Dr. Wahls treatment would provide any additional improvement to her condition?

My hope is that if LDN does not work for ME/CFS, there will be other treatments that are affordable that ME/CFS patients can try in order to give them some relief and hope for getting part of their lives back. For some people it is drugs (immunomodulators) like Ampligen or Equilibrant and for others it might drugs (anti-virals) like Acyclovir, Valacyclovir, Famciclivor, or Valcyte. I do realize that some of these drugs are too expensive for many patients to try, but some of the anti-virals like Acyclovir, Valacyclovir, and Famciclivor, which are off patent may for some people be within their reach to try with or without insurance coverage. I also wonder if a combination of something like immunomodulators or anti-virals and LDN might also be something to be looked at for ME/CFS.

Whatever the answer might be, we as patients need to find the strength and help to keep searching/pushing for answers. We can't give up and we need to understand that we do not stand alone in suffering from these types of devastating illnesses, ours is a unique illness, but perhaps more closely aligned with many of these other chronic illnesses than we might imagine. I wish we could find a way to fight these illnesses together in order to strengthen our power and force the hand of those who deny us basic human kindness and dignity.

Wally
 

Lotus97

Senior Member
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I started taking LDN recently because I thought it would help with inflammation caused by microglia activation and an overactive immune response, but now I'm reading here and elsewhere that LDN can boost the immune system and make things worse. So how do I know if it's working since I've already been experiencing those symptoms before I started.

Also, does any know which generic brands work the best? It doesn't say on my bottle, but we're going to call the pharmacy tomorrow. Someone in this thread said Teva/barr was supposed to be good. Can anyone confirm this? And what about the other brands?
 

NK17

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I'm on LDN 3 mg x day, compounded by a local pharmacy (I've been taking it for the past 2 months) and on Valcyte 900 mg x day (soon it's going to be 5 months) and I'm getting worse ...

Pain level has gone up and doesn't seem to want to abate, energy it's a memory of the past, plus I experience a lethal mix of joint/muscular/nerves pain, it ebbs and flows, but it's basically present from the moment I wake up until I go to bed!

I'm hoping I'm getting worse before I get better.

Maybe as it has been mentioned, the LDN is cranking up my immune response making more damage...

I was already at this level, more or less, of low energy/pain/inflammation before I started the LDN and the valganciclovir.

The only other time I had tried LDN it was at 4,5 mg, a couple of years ago, back then I was feeling much better compared to now in regard to my ME. Back then I'd noticed a mood uplifting action, almost to the point of giving me euphoria, which then subsided.

Back then I was another person, still with ME, but semi functional compared to where I'm now bed/housebound.

I'm hanging in "here", I'm being perseverant hoping at some point I'll feel better, but when do you think I should draw the line?
 
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I dont know how you can all start at 4.5mg at once!! I am light CFS and I couldn't deal with the "herx" of starting LDN that high. It took me 2 to 3 years to go up to 4.5mg!!!!
Start low ALWAYS no matter what it is in CFS