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Is it a wonder drug or snake oil? (LDN)

Discussion in 'Other: Methylation; B12; Glutathione; GcMAF' started by Snowdrop, Nov 28, 2018.

  1. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    In October 2003, Linda Elsegood was diagnosed with secondary progressive multiple sclerosis, and told that doctors could do nothing more for her.

    “That was devastating,” she says. “I was living, but it couldn’t be called living.”

    Then she found out about a treatment using a low dose of a drug called naltrexone (LDN) from other MS sufferers. Elsegood found a prescribing doctor, and began taking it. “After three weeks, LDN tuned in that television set. I could see properly. I could begin to hear better. Cognitively, I could start to understand. It was amazing. Totally, totally amazing.”

    Link here: https://medium.com/s/story/is-it-a-wonder-drug-or-snake-oil-c5b4012c097e
     
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  2. Webdog

    Webdog Senior Member (Voting Rights)

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    I personally think LDN should be available to all ME/CFS patients who want to try it for brain fog, fatigue or pain. I'm trying to convince Kaiser Permanente of this.
     
  3. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I have access to LDN through my GP who was willing (after some cajoling) to prescribe it.
    Sadly, it needs to be compounded and it is not covered by insurance. I can't afford to take it as a result.

    I would cost me CDN $96 a month/30 capsules.
     
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  4. andypants

    andypants Senior Member (Voting Rights)

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    LDN had made a huge difference for me, I’d say it has probably increased my level of physical functioning by 10-20%. I would never have survived this fall without a major crash if not one it.

    Not that much of an effect on the brain fog, but that’s probably because the last six months while on LDN have also been very busy, and all my energy has been spent keeping my head above water. I’m excited for the new year when things will hopefully calm down a little and I might have more brain power to spare:)

    I agree with Webdog, everyone with ME should have the chance to try it. Of course it doesn’t work for everyone, but even so.
     
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  5. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @andypants.
    After a very heavy year, my functioning has deteriorated and, added to new comorbidities needing frequent hospital appointments, I would welcome the chance to retrieve some ground. Are you able to tell me where I can get LDN to U.K., PM is fine? Many thanks.
     
  6. Webdog

    Webdog Senior Member (Voting Rights)

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    Insurance wouldn't cover compounded LDN for me and that got expensive fast. So I convinced my doctor to prescribe covered 50mg Naltrexone tablets, which I dissolve in water for the correct dosage (discussed in other threads).

    Even if insurance won't cover, 50mg Naltrexone tablets are fairly inexpensive to purchase. However, a prescription is required in the US, though I've heard it said there are ways around this.
     
  7. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Yes, I have wanted to do that but every time I have managed to get to my Dr I never get the chance. I barely speak and am there to get my sleeping meds renewed.
     
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  8. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    Have any studies looked at this?
     
  9. Alvin

    Alvin Senior Member (Voting Rights)

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    I want to see a proper study done on it. Several in the ME/CFS world have advocated it (Dr Klimas, Dr Younger) but i checked and found no actual research on it beyond anecdotal statements which really irks me.
    And if it does work the proposed mechanism is not convincing
     
    Last edited: Nov 28, 2018
  10. Webdog

    Webdog Senior Member (Voting Rights)

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    What @Alvin said.

    However, there was a 2010 pilot study in Multiple Sclerosis, which found "LDN was well tolerated, and serious adverse events did not occur" and "LDN significantly improved mental health quality of life indices."

    Pilot trial of low‐dose naltrexone and quality of life in multiple sclerosis, 2010, Cree et al
    https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.22006
     
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  11. Alvin

    Alvin Senior Member (Voting Rights)

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    I had only looked for ME and CFS when i was trying to find out more about it so i had not seen this study.

    Its very interesting. In our case i would guess the theory is that immune boosting is causing the cognitive improvements since low NK activity has been stated by several sources as the cause of ME related cognitive issues. Does this mean the cause is similar in MS?
    Since Naltrexone is supposed to boost immune activity how does it improve MS which should involve worsening autoimmunity if the immune system were enhanced. And with us, we have immune deficiency and immune activation, it should make ME worse in some ways and improve in others if immune boosting were its mechanism of action. All that said how it works and what exact immune abnormalities are involved with us and MS is not well understood...
     
    Last edited: Nov 29, 2018
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  12. JES

    JES Established Member (Voting Rights)

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    From my understanding LDN is more complicated than an immune boosting medication and I think the idea that anything that activates the immune system is necessarily bad in autoimmune diseases is outdated. Immune suppressants have been used for decades in diseases like MS and they have only seen limited success. LDN also inhibits activation of TLR4 receptors in microglia, which makes it an anti-inflammatory with regards to this effect.

    AFAIK there are no studies on LDN with regards to ME/CFS, but LDN has had an impact within MS community especially in Norway and there was also a study here showing some results on fibromyalgia. The author of that study (Younger) is also involved with Ron Davis' and OMF research. Younger spoke at length about neuroinflammation in ME/CFS, but since he already has studied LDN, it seems he doesn't think LDN will be the drug to solve neuroinflammation in ME/CFS.
     
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  13. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    It didn't do anything for me and I tried it for a year but I heard it works for some.
     
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  14. Mij

    Mij Senior Member (Voting Rights)

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    Oh, that is expensive. I paid $45 CDN for the same amount several years ago. The price differed quite a bit between the 2 compounding pharmacies that I contacted.
     
  15. Alvin

    Alvin Senior Member (Voting Rights)

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    I don't doubt it could have complicated effects, but from my point of view thats all the more reason to study it to tease them out.
    Also many seem to have tried it and found it didn't help their ME so thats important to note.

    I could not find any, Younger apparently tried to do one but could not find patients to recruit according to the FDA listing.

    We probably have some similarities to MS but thats not enough, we have a different disease even if it is related. If it works, how it works and why it works are very important questions. And if its supposed to help then why would it not help one of the cardinal symptoms. Maybe it only does one thing and leaves the others untouched, or maybe the anecdotal evidence is terrible in aggregate or who knows. The need for more study is clearly indicated
     
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  16. obeat

    obeat Senior Member (Voting Rights)

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    This was an 8 week study so imo in a relapsing remitting illness these results are irrelevant.
     
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  17. Sbag

    Sbag Senior Member (Voting Rights)

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    In the UK you have to get LDN from a pharmacy in Scotland. Ideally your GP writes a prescription and then you get it from them. I think it costs about £30 a month.
    If your GP won't prescribe it then I think they can arrange a call with another dr who will , which you pay for. Not entirely sure on this but I know someone who had to get it this way despite her consultant saying she should have it her Gp wouldnt prescribe.
     
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  18. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thank you @Sbag. I think I’m sorted. Thanks for the helpful info.

    ETA: will be discussing with doctor to check advisability in my case.
     
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  19. andypants

    andypants Senior Member (Voting Rights)

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    That’s good @Binkie4 :) I wouldn’t be able to help as I get mine on prescription in Norway and have no idea how it works in the UK.

    In my case I’m pretty sure it’s the anti-inflammatory effect that is helping me. At least, something about LDN is definitely helping. If I forget one dose I will quickly be reminded, as the nerve pain will be back about an hour after, when the effect of the last dose runs out. I always feel the pain come back before I remember that I forgot to take it. Hard to believe that is placebo, but I’m open to the possibility. If it works...

    I got significantly worse for the first 10 days, then suddenly it flipped and started helping instead. I don’t think my energy levels have improved much, just that the absence of chronic nerve pain/aches makes it so much easier to function.

    I have heard just as many people tell me it didn’t do anything for them, or they felt worse while on it, as people who are helped by it. Have not heard anyone say they got worse long term, but then like with everything else people are usually quicker to tell success stories than failures.

    My GP was pretty clear that if it doesn’t work within one month I should quit.

    I completely agree I would like to see some proper studies on a ME/CFS cohort. My impression is that it’s a low risk drug at such tiny doses, but we don’t actually know that. And, of course, PwME often react differently to drugs than other groups. Studies definitely needed.
     
  20. Binkie4

    Binkie4 Senior Member (Voting Rights)

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