LDN - why aren't more trying it

Discussion in 'Fibromyalgia Main Forum' started by deepak, Apr 14, 2012.

  1. deepak

    deepak Member

    I recently joined a yahoo group on LDN where many seem to be having such good results with low-dose LDN.

    But I see not many posts or users of it on this board.

    Was just wondering why that is , as it seems to be a low-cost, low-risk, effective way to lower pain.

  2. Nanie46

    Nanie46 Moderator

    I am just finishing a 4 month trial of LDN. I did not notice any benefit from it.
  3. deepak

    deepak Member

    Dear Nanie,

    Do you have CFS mainly or FM ? I hear its more effective for the FM pains.

    Jaci, do a google search for LDN and fibromyalgia - that would give you a lot of info. :)

  4. Nanie46

    Nanie46 Moderator

    I have chronic lyme and bartonella infections, which my FM is a symptom of. I had fatigue, insomnia and brain fog which have resolved with long term treatment.

    The LDN did nothing for my pain.
  5. mbofov

    mbofov Active Member

    A couple of years ago several people here tried ldn with varying degrees of success. There were a lot of posts about it then. I tried it myself although pain is not an issue for me. Anyways, it made me spacey and tired and had trouble functioning, so had to stop it.

    I know someone who initially had very good results with it for pain and energy and then it stopped working.

    But I do think it's definitely worth a try for people with pain. ANd it is supposed to help the immune system but it didn't work for me.

    A good website is lowdosenaltrexone.org -

    Are you trying it?

  6. deepak

    deepak Member

    Read some interesting comments on amazon and on the LDN yahoo group about it.

    It is non toxic , safe and some also say just good to take as a general preventative for various bad illnesses. Moreover, I can get it the high dose tablets here in India and then make the low dose myself. So, yes I am thinking of trying it. In the curetogether site LDN has scored the highest in a pain treatment survey for FM people.

    Just sometimes I get scared doing all this on my own without a doctor - like you guys say, we are experiments heh !!

    Started a new therapeutic yoga class so am rushing there now.

    With love,
  7. hermitlady

    hermitlady Member

    Be aware that if you use any type of narcotics for pain, that you CANNOT take Naltrexone. It will make you very sick...been there, done that.
  8. Saoirse3

    Saoirse3 Member

    I take Robaxin for herniated disc, Facet Disease and spinal stenosis. Not sure if that is considered narcotic, but all the same I want to keep my prescriptions to a minimum, if possible.
  9. spacee

    spacee Member

    LDN at Skips Compounding Pharmacy in Florida is about $20 a month.
    The short time I was on it, it seems to be shifting my immune system
    in a good way.

    I have the Facet problem in my lower back! I didn't know that it was
    called a disease. When I googled it, i seem to be doing what is suggested
    (as I sit here with heat on my upper back and ice on my lower.

    It has been 2 days since I have done the yoga class and some weeks, I
    seem to need it more often. I have a class in about an hour.

    So, thanks for mentioning that Saoirse.

    There is a list of meds that don't work with LDN at lowdosenaltrexone.org.
    Hope Robaxin is compatible. I take mobic. Will look up the robaxin...it
    might be better.

    I agree, A lot of meds....a lot of stuff in our bodies. I hope I never have
    to go to the hospital with my list :(


  10. deepak

    deepak Member

    Do you have FM ?

    What were the downs you felt with LDN ?

  11. deepak

    deepak Member

    Dear Leah,

    do a google for LDN. Lot of very interesting results and testimonials - some call it a miracle.
    The good thing is it is non toxic and almost no side effects.

    It is an immune system regulator and makes that strong - so then that can tackle whatever problem the body is going through


  12. MicheleK

    MicheleK Member

    Hello everyone,

    I have ME/CFS/FM. I go to a top ME/CFS/FM clinic for my medical care related to these diseased. About a year ago I inquired about LDN with a few of the leading treating doctors in the USA. No one at the time was really into using it.

    Now a year later, those same doctors are beginning to use it with their patients. I know three top doctors who are being very open about having changed their minds on this drug (It is a drug and you need a prescription in the US) They told me they are seeing good results not just in pain, but in how patients feel as a whole.

    As for me, I am on it but ony for the past month. I have not noticed any difference but the doctor said it is something that needs to be taken in the exact low dose, without skipping days, and could take as long as 6 months to get real benefit. The thing is there is no large clinical study on the drug except for what it was initially made and definitely works for, alcohol and pain medicatin addiction. So most of what you find on the internet is antedotal, not any scientific background to Low Dose Naltrexone.

    I will stay on it and maybe write an update once a month for any noticable changes. I would love it if others on LDN would do the same.
  13. deepak

    deepak Member

    Dear Michele,

    I just started it since 4 days and am taking 4.5 mg. How much are you taking ? I get the 50 mg tablets here in India and make my own LDN.

    Cognitively I surely feel MUCH better !! Pain wise too I would say I am seeing some reduction but maybe it is too soon to say.

    Do a google for Dr burt berkson, Dr Bihari and others - it seems miraculous that this LDN can be SO helpful for so many things - it is just an immune regulator and does not tackle any particular disease directly but makes the immune system stronger to be able to tackle it - it has also been used to treat cancers successfully.

    Will keep posting on my experience with this - you do too :)

    With love,
  14. MicheleK

    MicheleK Member

    Hi, I was started at 1.5 mg for the first week. The second week I was put on 3mg for a week and at the 3rd week up to the full dose of 4.5mg. That is the recommended dose for those with autoimmune issues.

    I actually have ME/CFS/FM/POTS which are not thought to be autoimmune, however my genetic testing showed some as yet unidentified autoimmune issue.

    I don't have much pain that cannot be taken care of with over the counter medications, so I was not put on it for pain. The doctors are seeing LDN modulating the immune system. So I suppose I am on it to support my immune system. I have a lot of issues with inflammation. We are hoping this will help so I do not have to go on steroids. Currently I am on a week of steroids about every 6-8 weeks. They are so bad for the body. I hope the LDN does the trick!

    Wishing you all a good day!

  15. deepak

    deepak Member

    Dear Michele,

    I think I read some place you cant take steroids alongwith LDN ?

  16. MicheleK

    MicheleK Member

    Yes, from what is written that I have seen taking any more than 10mg of steroids along with your LDN defeats the purpose of each. One is trying to down regulate your immune system(steroids), while the other is trying to up regulate or plain and simply just regulate it.

    It is hard to determine what to do when there is so little solid scientific evidence on LDN. We,the patients who are put on it are watched and what happens is taken note of.

    What is it like in India?

  17. cal-bunnygirl

    cal-bunnygirl New Member

    I tried it for two days. Doc started me on 2 mg and the first night, i was fine, felt a little speedy the next day, then the next night I took it and didn't sleep at all and felt really weird the next day. So I stopped.

    My doc put a few patients on it and he said it helped a few of them enormously with energy levels.

    I think if i try it again, I would have to start at a lower dose. I'm sensitive to alot of medication though and have terrible insomnia, so I have to be careful myself.

    I have cfs and fibro. CFS is what i consider my primary illness though as the post exertional thing is the worst for me.
  18. deepak

    deepak Member

    From what I have read most people's minor side effects on starting LDN go away within a week to a month.

  19. MicheleK

    MicheleK Member

    I have read about people getting insomnia and energy from LDN. The doctors then tell those patients to take it in the morning. I however have noticed no new energy. I have ME/CFS/FM & POTS. All of these are energy suckers. But I am willing to give it a good 6 month try since it is so inexpensive and it's not like I have any other better alternative I haven't already tried. We'll see.

  20. MicheleK

    MicheleK Member

    Hi Jaminhealth,

    I know it is so disappointing when yet another treatment doesn't work. We just would like to feel better! If LDN was expensive I probably wouldn't have tried it. But like I said we'll see if it does anything.