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LDN - how's it working for you?

Discussion in 'General Treatment' started by jace, May 26, 2010.

?

I've been on LDN for...

  1. Less than a month - it seems good

    11.6%
  2. Less than a month - it's not nice

    14.0%
  3. 1 - 3 months - feeling much better

    7.0%
  4. 1 - 3 months - some good, some bad

    7.0%
  5. 1 - 3 months - feeling worse but hanging in there

    4.7%
  6. 3 - 12 months - it's great

    10.5%
  7. 3 - 12 months - not sure it's working for me

    10.5%
  8. 1 year and more - this stuff works for me

    11.6%
  9. 1 year and more - not sure it's worth it

    4.7%
  10. I used to take it but I gave up

    18.6%
  1. jace

    jace Off the fence

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    England
    Helsbells asked if there was a poll on how LDN is working for people. I couldn't find one so I thought I'd make one...
     
  2. _Kim_

    _Kim_ Guest

    jace, can you edit your post and add a poll please?
     
  3. jace

    jace Off the fence

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    England
    The forum crashed for me while trying yesterday, Kim, and I couldn't get back in until now.

    ETA If you delete your post, I'll delete this one :innocent1:;)
     
  4. Resting

    Resting Senior Member

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    For me there has been some good (but no bad) so I chose the 4th selection but it is not entirely accurate.
     
  5. jbclem

    jbclem

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    About the time I started taking LDN, I developed an upset stomach. It's common for me to have an upset stomach for 4-6 weeks at a time, at least since I came down with CFIDS 27 years ago, but this one dragged on and after 3 months I decided it had to be caused by the LDN. I stopped taking the LDN and the upset stomach went away within days. It's been about two months now and I'll probably try the LDN again...I didn't get any obvious benefits during the time that I was taking it but I want to give it another chance.
     
  6. leaves

    leaves Senior Member

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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.
     
  7. oipemowell

    oipemowell

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    Portland, Oregon
    It worked for a week and a half, or helped with energy and less pain, and was able to get off Vicodin. Then when I tried to raise it to 4 mgs, dizziness, splitting headache, etc. hit, so I lowered it...had to go as low as 1 mg for side effects to go away. Tried to get back up to 3 where I had experienced something sortof good, but could never get up that high again. Just got splitting headache when I tried to raise it. Then more pain all day long...wanted my Vicodin back! So I threw in the towel. Quit it, and felt much better, and happy to be back on Vicodin, which seems to keep pain away all day, til I hit the sheets again and aching starts up again.

    Very disappointed LDN didnt work for me. No source, but a friend told me it works best for those with auto immune illnesses, like MS, lupus and RA.
     
  8. SaveMe

    SaveMe *****

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    the city
    No appetite on LDN what the heck is going on??
     
  9. drex13

    drex13 Senior Member

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    Columbus, Ohio
    Under a month, but it has already helped with IBS issues.
     
    ggingues likes this.
  10. SaveMe

    SaveMe *****

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    the city
    also my extremities (hands and feet) are colder on LDN.

    Coincidence?
     
  11. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    I have been on LDN for some months. I am currently on 3mg/day. Until recently the only benefit was improved sleep. However, for the last five years the demands over the holiday season have wiped me out. I kept expecting to crash this year too. It never happened. Coincidence? I can't say yet, but it could be LDN. So I can't answer the poll, I don't fit any of the options. Bye, Alex
     
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Yeah, I would chose the next to last. But not sure what the "worth" is really refering to. It's a relatively cheap med. I have been on it for over 2 years and do not plan to discontinue.

    GG
     
  13. Charles555nc

    Charles555nc Senior Member

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    I just recently got back on ldn (only .5mg) after I took a massive vitamin protocol for 2 and a half months.

    Before I felt like I got hit by a truck with even just .5mg

    Edit 1/20/12

    Getting massive herx on ldn and my vitamin protocol very dangerous but noticing improvement
     
  14. Frickly

    Frickly Senior Member

    Messages:
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    Texas
    It was hard in the beginning. Migraines and could not sleep. the sleeping issue kept getting worse until I was exhausted. I started taking it every other day for about a month and that solved the problem immediately. Then went back to 4.5 everyday with no problem. I have been on it going on seven months but did not realize it was helping until I ran out for a week and a flood of pain came back.
     
  15. Min

    Min Senior Member

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    UK
    it made me incredibly ill
     
  16. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    I was sick like a dog for over six months but I'm a different person now. I'm glad I persisted.
     
  17. L'engle

    L'engle moderate ME

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    Canada
    Too early to say. I think it helps with energy but the insomnia is bad right now, even taking it only twice a week and in a small amount. Going to try once a week. I don't have insomnia when not taking it, so the idea of finding a sleep aid and testing it with he LDN, potentially having to try several at great expense, is not seeming worth it. If I can't tolerate once a week I will go to once every two weeks. I've been trying it off and on for a few weeks.
     
  18. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    @ l'engle

    LDN disturbed my sleep too in the beginning but with the help of a sleeping pill, I made it through the first months. After a year my sleep improved substantially!
    Now I don't take LDN anymore because I had some lab work to be done and I had to be off medication. Unfortunately, after three months I'm awake again most of the time ...
     
  19. chilove

    chilove Senior Member

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    I've been on it for about two months. I started at the full dose of 4.5mg per day. It immediately helped a great deal with seasonal and environmental allergies and sensitivities. It helped me fell less inflammed all over and it helped me feel a bit more energetic. It also great reduced my EMF sensitivity and I think lately it may be making me need less cortisol and thyroid meds.

    The bad is that I've had a lot of mucus production in my eyes, ears, nose and throat and have two ear "infections". I'm suspecting some kind of detox/healing reaction.

    My history is CFS/Fibroymalgia, Endocrine system dysfunction, Sarcoidosis, MTHFR mutation.
     
  20. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    I am on 4.5mg/day and it has a beneficial effect on sleep. However, it does create a disturbed sleep pattern. I take it before sleep currently, and sleep for about three hours. Then I wake up. I am awake several hours, then I can go back to bed. I think this is about when LDN stops working. I start feeling better - and my body says wake up. However, when I go back to sleep I am able to get good quality sleep for as long as I need.

    I tried taking it in the morning. I feel good enough that I think I can do things. My normal warning signs that I am doing too much are mostly not there - so I overdo things and crash. The only warning sign, which seems to be reliable, is when I start breathing harder. I think thats a result of crossing the aerobic threshold.

    My fatigue is very noticably less at some times of the day, but not all the time. I don't know if this is better sleep or endorphins. I also seem to bounce back from a crash even faster. When I was at my worst in the 90s I would take in excess of two week to recover from even a mild crash. I don't know how long because I would crash at least once every two weeks, if not every few days. In the last couple of years I have bounced back in a day or three. Last week I bounced back in twelve hours. Now I might not have overdone things much, and so recovered faster, but its still a good sign.

    The only other treatment I am on at the moment is Thorne B-Complex formula 12.

    Bye, Alex
     
    ggingues likes this.

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