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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Low dose Naltrexone

Discussion in 'General Treatment' started by Cort, Jul 22, 2009.

  1. alice1

    alice1 Senior Member

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    garcia i agree with you as far as taking lose dose ldn and it not doing anything.i felt something happening at a 1/4 of 1 mg.
    i'm now up to 1 mg and my sleep has been much better,i wake up once then i'm out again.
    i have to say i really am feeling a difference.i'm up at 6am every morning with energy and i'm good til about 2pm.i have a wee nap then i'm good until
    10.my brain fog has decreased which is a blessing for me i couldn't think straight.please understand i'm not 100% but i think the increase is at least 15 to 20%.
    dr klimas mentioned the imunovir would take about 4 months to notice a difference.that would be june.
    i will continue the ldn until i'm at optimal dose 4.5.and may stay on it forever because of the great things i've read regarding lymphoma.
    i haven't once doubted this drug,,i don't know why as i'm usually leary it's too good to be true.but so far so good.
     
  2. jace

    jace Off the fence

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    Garcia, thanks for the clarification :)
     
  3. JT1024

    JT1024 Senior Member

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    Here is a link to a review of the recent LDN conference in Glasgow. It is written by an ME/CFS sufferer from Finland that takes LDN.

    http://review-url.com/9
     
  4. JT1024

    JT1024 Senior Member

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    Another link by the same author...reviewing a memoir of an MS patient's experience with LDN.

    http://link-url.com/GEJ3
     
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I have been on LDN since Sept 2009 but SAMe only 1 Month, I have not noticed anything significant with the SAMe.
     
  6. knackers323

    knackers323 Senior Member

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    when I started to take LDN it made me feel worse. can someone please explain this for me? and is it a case of needing to fight through this period before we fell better or is it just not going to work for me? thanks
     
  7. Jenny

    Jenny Senior Member

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    Sorry to hear you're worse on LDN knackers. That's my experience too, I'm afraid.

    I'v been on it over 2 months now. I've tried to increase from 0.5 mg to 1.0 mg to 1.5 mg. What seems to be happening is that after 10-14 days on any particular dose i feel so much worse that it's almost unbearable. Shivering and sweating, severe cramp-like pain all over, permanent headache, nausea, diarrhea, dizziness, head pressure, and vertigo. I'm so weak I can hardly move my hands to type, and I've lost nearly a stone in weight since I started it as I can hardly eat anything.

    So what's going on? Perhaps several possibilities:

    1. It's making my immune system work better and it's starting to attack infections. This at the start makes you feel worse. If you carry on you'll get through this and feel better eventually. (But the danger is that more damage is caused by more inflammation.)

    2. It's moving the immune system further towards TH2 (see my earlier post on a paper from Medical Hypotheses), which is the opposite of what we need. This feels like what's happening as I'm sneezing a lot as I do when I'm allergic to something.

    3. My worsening is nothing to do with LDN but just reflects what are my normal ups and downs. This is a distinct possibility.

    I'm going to stop it completely for a while and see if I start to feel better. Then I might start again at 0.5 and/or take it once or twice a week.

    Hope you feel better soon knackers!

    Jenny
     
  8. garcia

    garcia Aristocrat Extraordinaire

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    This is a definite red-flag that you need to stop. I also got the weight loss (I'm underweight to begin with). Basically what it did to me was reduce my absorption of nutrients. I know this because my stool volume was hugely increased. I suspect this has to do with LDN's suppression of TH17.

    It's possible, but if this is really the case then the cure is worse than the disease!

    This sounds the most plausible explanation. Or as I said turning off TH17 which is responsible for gut-health.

    I don't buy this.

    Good choice. That is basically what I'm doing.
     
  9. Jenny

    Jenny Senior Member

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    Thanks garcia that's helpful. I think the weight loss though is just due to not being able to eat much. I don't have any evidence that I'm not absorbing nutrients - stool volume is unchanged and diarrhea is only intermittent.

    I find it odd that hardly anyone on the LDN sites have such worsening in their condition and most on Patients Like Me report benefits.

    Jenny
     
  10. garcia

    garcia Aristocrat Extraordinaire

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    It's interesting we both got the same symptom, but apparently by two different mechanisms, since my appetite was unchanged, and if anything was increased.

    Yes it is strange. But then non-responders may not go to the trouble of publicising their results and just move on to trying something else. Even then, I'd expect to hear more negative stories.
     
  11. Diva55

    Diva55 Member

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    I've been looking at the various Yahoo LDN sites and quite a few posters mention adverse reactions when starting up:
    • Weight loss
    • More FM pain flares
    • Appetite supression
    • Candida / Yeast flares
    • Insomnia
    • Viruses

    It's easy to read some sites and think this is a miracle drug which it is of course not.

    I try to look for the good, bad and ugly when taking a new drug and think I've found enough to get a balanced view.

    I've had insomnia, viruses, candida, rashes, appetite supression (lost a few pounds)

    I've also benefitted from falling asleep quicker and more solid sleep. Some good days with less pain and more energy (not shouting about this as it could be down to mini remissions) but the sleep is definitely down to LDN.

    However the virus / rashes / candida I believe are also down to LDN so no easy ride!

    I'm finally on 1.5mg for the last 17 days. I restarted at 0.1mg and worked up slowly as I had massive stomach cramps initially on 1.5mg. Now able to tolerate that dose without cramping.
     
  12. Diva55

    Diva55 Member

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    I know some people report great reactions with Sam-E. I'm with you in that I don't feel anything different but have to believe it's supporting my liver, mood & joints.

    The fact that I'm now able to tolerate it says that something has shifted for me which could be down to Methylation coming online. But then again who knows!

     
  13. SaraM

    SaraM Senior Member

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    Last year I was on LDN for 1 week which helped with my muscle pain. It lost the effect after the first week. So, I stopped and then started it again with no benefit at all. Two weeks ago I gave LDN another try and I have been 95% pain free to this date. I got the first one from an online Indian pharmacy and the second one was purchased for me by a friend overseas.
     
  14. Cloud

    Cloud Guest

    LDN made me feel like I was going into a severe full blown ME/CFS relapse. I haven't been that sick in years, even with the more severe crashes. I have seen several identical reports from other pwc's, and some tried to make it on through this reaction continuing the LDN at lower doses, but they only got worse. That seems to be most of what I see...it really helps, or it really hurts....I don't see a whole lot of benign responses. And OMG, would I ever love to know the mechanism causing such vastly different responses. I still have mine on the shelf and hiss at it occasionally. I am glad for those it is working so well for.
     
  15. Frank

    Frank Senior Member

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    Started out on 0.5 mg for two days had horrible herx reaction (headache, swollen lymph nodes, soar troat, feverish, bad sleep). Now doing 0.25mg every second day that's going good. Next week i will be going for 0.25mg every day. It has helped me already feeling better and removing some gunk out of my system.

    So garcia's impression, is also my own, that is, very low dose naltrexone seems better suited for CFS/FM. Starting from 0.125mg - 1mg and taking it every second day to start off. My therapist told me the LDN is balancing out Th1/Th2 and the body is removing the opoid peptides.

    I will repeat myself: the opoid-peptide free diet and supplementing the DPPIV-enzyme, is to my knowledge an important aspect in this therapy. cfr. autism treatment.

    I'm also thinking there could be some kind of autism-like subgroup in CFS/FM that is responding well.
     
    L'engle likes this.
  16. knackers323

    knackers323 Senior Member

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    I was taking LDN for a few weeks and it made me feel worse. Since I stopped it with each day I have felt better and better. And its hard to say but I think maybe even better than what my baseline was before? Has anyone heard of this happening or have an idea how this would work?
     
  17. garcia

    garcia Aristocrat Extraordinaire

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    I can't remember anyone else saying this, but it certainly sounds plausible to me, and chimes somewhat with my experiences. Basically that LDN seems to do some good, but also has some unwanted effects. Its possible that by stopping you have reversed the temporary unwanted effects, but still retained some of the benefit of the good effects.

    If so might be worth trying another round (then stopping again)?
     
  18. Cloud

    Cloud Guest

    Even though I reacted so badly to the LDN, I did have a similar experience of feeling better (than pre LDN baseline) a few days after stopping. This is the only reason the LDN still remains on my shelf as I comptemplate another trial at microscopic doses.
     
  19. Jenny

    Jenny Senior Member

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    Our reactions to LDN are very interesting. No other illness group seems to have such severe initial problems. I wonder what that says about the nature of ME?

    Do we have a very high load of pathogens compared to other illnesses it's been used for?

    If our problems are due to bugs being killed off or toxins what might this tell us about these bugs?

    Do we have problems because our systems find it difficult to deal with toxins?

    Are our immune systems disregulated in a different way from the systems of those with the other illnesses it's used for?

    These seem to be some of the possibilities - another thing that occurred to me though is perhaps we have a bad reaction at very low doses and would do better on the maximum dose. (Seems a bit unlikely - and I won't be trying it - still feeling dreadful after stopping 3 days ago.)

    Jenny
     
  20. Lynn

    Lynn Senior Member

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    Hi Jenny,

    About 6 months ago, I was thinking along those lines. I tries a dose of 3 mg and crashed pretty badly.

    On another note, yesterday I started daytime dosing. I'm not so sure that is the route for me. I could barely keep my eyes open all day. I took it again today and will see how it works for me.

    Lynn
     

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