• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Reasons for not trying LDN

mermaid

Senior Member
Messages
714
Location
UK
I tried it twice with a year between each attempt but had some very unusual difficult side effects unfortunately which were worse the 2nd time I tried.

I was terribly disappointed as I really thought it would be helpful for me. I had researched it very well and been on LDN forums etc, and knew of others who had been helped. Also I have autoimmune disorders so it seemed an obvious choice for me.
 

helen1

Senior Member
Messages
1,033
Location
Canada
It's hard to find a doctor to rx it. Most are unfamiliar with low dose therapy. Yes you can order it online like I do but a lot of people are uncomfortable with that. So those are two other barriers.
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California
@digital dog - I tried it 5 years ago - it made me spacey, tired, had difficulty concentrating, so I stopped it. Looking back, maybe I should have lowered the dose. I do plan to try it again in the near future and will probably play with the dose more if need be. It looks great on paper, and many do well on it - my sister tried it (for another illness) and had none of the side effects I did, although I don't know if it actually helped her.
 

digital dog

Senior Member
Messages
646
Thank you for these replies.
It does sound so promising but I'm too scared really.
Insomnia is not something I can handle
 

NilaJones

Senior Member
Messages
647
My doc was unwilling to prescribe it when I talked to her a few years ago, but I asked her again recently and she said yes. It was less expensive than I expected. I have the bottle in hand and will try it when I get my sleep sorted out -- the abx I just started are disrupting my sleep.

I didn't know I could get it online, or I would have tried it years ago.
 

Gingergrrl

Senior Member
Messages
16,171
Am unclear right now as someone with Hashimotos (autoimmune) and a severe mast cell disorder, if LDN could push my immune system too far to the other side and make my MCAS worse (or if I will have allergic reaction to it).

Also I tried it two yrs ago and got severe insomnia but dose might have been too high and I took it at night vs. morning. I am still interested in it and was researching it last night to see if it is okay for those with MCAS but found nothing!
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I would not want to go without it now....
I believe, although I have no proof, that it is also helping to stabilise my thyroid function (I have Graves' disease) and my thyroid levels have returned to normal from being elevated... I did take some thyroid meds for a bit, but I couldn't tolerate them, even at a tiny dose, so I stopped even though my levels were still abnormal.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Insomnia is not something I can handle
Same here. But you can start at very low doses, you can dose in AM to avoid insomnia.

@daisybell the forums suggest that often people need to decrease thyroid rx when on LDN. :)

You can order naltrexone 50mg tablets from alldaychemists in India. Very inexpensive, can ignore the section asking for prescription. Dilute 50mg w/ 50ml distilled water, dose then is 1ml:1mg. Start low, go slow. I did have some detox initially, but I was prepared for it, and used my standard treatment, coffee enemas. LDN increased my stamina significantly. Also helping my old cat and husband, also old.;):cat:
 

JAH

Senior Member
Messages
497
Location
Northern California
It's hard to find a doctor to rx it. Most are unfamiliar with low dose therapy. Yes you can order it online like I do but a lot of people are uncomfortable with that. So those are two other barriers.
I think this is the main barrier. It helps a lot of people, so I think is it worth a try. I understand the fear, but worth a talk to your doc, if he or she knows about it.

It didn't work for me, it increased my pain too much - and pain is/ was not a real problem for me - so that surprised me.
 

Starlight

Senior Member
Messages
152
I think this is the main barrier. It helps a lot of people, so I think is it worth a try. I understand the fear, but worth a talk to your doc, if he or she knows about it.

It didn't work for me, it increased my pain too much - and pain is/ was not a real problem for me - so that surprised me.
 

Starlight

Senior Member
Messages
152
I have started it a month ago., At 1.5.dose. I had been afraid of the reported insomnia I had none of it. It really helps me to sleep raising the dose to 2.5 was too much for me it made me way too tiredNi haven't had any increase in energy yet and it has increased flushing and sweating. I am lowering the dose to 2 and will stay there if it doesn't cause too much fatigue.i find it great for sleep, better than sleeping tab and am enjoying the meandering dreams..I have heard of some people who say they got there lives back.i am hoping it will help along with antibiotic therapy I am starting for chlamydia pneumonia.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Same here. But you can start at very low doses, you can dose in AM to avoid insomnia.
I've been taking it for a month now. I had insomnia for the first 2-3 weeks no matter what time of the day I took it. As many people have said, the sleep disturbances should go away after a couple of weeks.
I did have some detox initially, but I was prepared for it, and used my standard treatment, coffee enemas.
I had what seemed like detox symptoms too. My sweat would have a horrible ammonia type smell, like cat urine. :eek: This seems to have subsided somewhat but it's still noticeable.

I've been taking 1mg per day. I've experimented with upping the dose to 1.5 and 2mg but it seems to worsen some symptoms if I take too much. Going to give it another week, or so, and try increasing the dose to 1.5mg again.

I seem to have 2-3 really good days a week and the rest of the time I feel the way I usually do. I haven't been careful with my diet lately so that may also be a factor. Seems promising nonetheless.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
You can order naltrexone 50mg tablets from alldaychemists in India. Very inexpensive, can ignore the section asking for prescription.
@ahmo
I've just ordered some naltrexone through alldaychemists. Very easy, very quick and not a big cost, even with teh shipping. Thanks so much for your advice.

Yes, the thought of trying to explain low dose naltrexone to my doctor and knowing that she would almost certainly say no was a big disincentive to trying to get hold of it. I'll let you know how it goes.

Has there been any trials of LDN for ME/CFS?
 

digital dog

Senior Member
Messages
646
DAisybell,
Did you have high thyroid antibodies? I'm interested that your thyroid stabilised on LDN without thyroid meds. How amazing! I cannot take the meds so I have to do something else; LDN seems the obvious choice but I doubt I will tolerate it.

JPV perhaps you will be okay on just 1mg. U have heard that some people only need this much. I wouldn't try and go higher if it is causing you problems and you are getting a reasonable response (a few good days).
 

digital dog

Senior Member
Messages
646
I have just listened to some video testimonials of LDN (thank you for the link....very slow and bit dull but have helped me) and a couple of the patients are only taking minute amounts of LDN and doing very well. One ladies life has been transformed from 0.6 mg/ml (not sure which). She tried to go higher but can't.
Another lady felt 1ml was her optimum amount.
Thought i'd pass that information over as perhaps for a lot of us under 1mg is the perfect amount. Perhaps the 3-4.5 level is too high for some of us.
Personally, if I try this I will start on 0.1mg like one of the ladies on the video testimonial.
 

digital dog

Senior Member
Messages
646
Perchance dreamer, do you think those people with insomnia started on too high a dose perhaps? The insomnia scares me very much.