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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Low dose Naltrexone

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

  1. amylouise

    amylouise

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    Hobart, Tasmania
    Thanks for replies! Yes I am under the care of a doctor, he had never experienced anyone reacting as I have to it. No doubt I should of started low but I cannot even comprehend taking any now because of what it's done to me. I just want to be reassured these symptoms will pass ha. It's all very interesting and does give me some insight to an area of massive concern for me. Has anyone else reacted like this and did it pass?
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    3 mg is a very big dose to start with. Many of us would get a pretty strong immune and other reaction starting with that high a dose. I'd stop for a few days till your symptoms are gone and start with half an mg or less and see what happens. It usually takes quite a few months to titrate up to a full dose of 3.5 to 4.5 mg.

    Good luck with this. I hope you find a dose that helps. I had immune activation starting with just 1.5 mg. Yes, the symptoms pass. Every time I raised the dose I had immune activation (i.e. I felt sick!) for 5 days to a week. That indicates that the immune system is actually doing what it is supposed to. You just have to go very slowly.

    Sushi

    P.S. one friend found 1.5 mg good so he doubled it and took 3 mg and ended up in the hospital with a temperature of 104! He actually caught something!
     
  3. juniemarie

    juniemarie Senior Member

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    I dont know why people start at such high doses especially if the have CFS and have sensitive systems.
     
  4. juniemarie

    juniemarie Senior Member

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    I started with an extremely low dose well under 1 mil like 1/4- 1/2 mil and got most of those symptoms, queasy stomach, disturbed sleep, headache but I stayed on that small amount for a week before I considered going up....went up 1/4- 1/2 mil at a time it took many many weeks to get up to 3 Never a good idea to start at such a high dose. Have been on it for a couple of yrs now....thanks to Sushi and her spanish compadre Sergio who got me started.
     
    jace likes this.
  5. amylouise

    amylouise

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    Hobart, Tasmania
    Yes I thought it was way too high bit my doctor was pushy, he wanted to start in 4.5mg!! I think I would of had to be hospitalized if that was the case. Certainly when the flaring of symptoms settle I will consider trying 0.25mg. I'm too scared right now. It is comforting having this community here. I feel a bit alone in the LDN trial, the best support and knowledge is here!
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think we have all learned to check with other patients before starting something a doctor recommends! o_O

    There are a lot of people here who take LDN so you should get some good support.

    Just let things settle down and maybe try a couple of specs of it. Different people clear LDN at different rates too. You really only want it working for about 4 hours, so some take it every other day if every day proves too much.

    Best wishes,
    Sushi
     
  7. jace

    jace Off the fence

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    Hi Amy, here's the facebook group for LDN for ME - https://www.facebook.com/groups/200010163370187/ If you pm me your facebook name, I'll get you added to the group.

    They've lots of files with information on compounding, dosage, experiences, etc. Well worth a look if you're on Facebook.

    I went gung-ho into LDN three years ago, I started on 1.5mg, but many more sensitive souls find they have to start as low as 0.05mg - though most start at ten times that, 0.5mg. Start low, go slow is the general advice. I wouldn't be without it. I find now I can take a night off to advantage (when I need to compound more supplies), but it's risky to take two nights off, and three nights off is just plain stupid.

    One friend of mine found LDN aggravated her gut symptoms, the theory is it was because of a Candida overgrowth. She found success using a transdermal cream version of LDN, from Dicksons (though I think she's making it herself now).
     
  8. juniemarie

    juniemarie Senior Member

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    Amy Actually the very best place to get guidance and help with the LDN protocol is to join the LDN Yahoo group. Filled with very long term LDN users who are generous with their knowledge, which is considerable.
     
  9. penny

    penny Senior Member

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    Hi Amy,
    Just wanted to say that I'm another person who can tolerate (and benefit from) a very dose of LDN. I've been on it for almost a year and a half and don't do well on dosages over .5mg - but do do well at that dosage! I wouldn't want to be without it but also wouldn't want to take a large dose.

    Oh, and I also got some immune activation when starting (a little fluey, actually caught a cold), as well as some nausea, headaches, mild sleep disturbance, etc. All of these were manageable at a low dose and went away as my body got use d to it.

    Good luck!
     
  10. jace

    jace Off the fence

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    The lower the dose, the lower the cost ;)
     
  11. Marlène

    Marlène Senior Member

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    hello amylouise

    The lower you start, the better you can manage the symptoms. Start low, 0,25mg and see what happens after a week. If you feel the worst is past, you can slowly increase again. It took me 1,5 years to go from 0,25 tot 3,5 mg. The first six months I spent in bed mostly. It made me very ill in the beginning but the benefits are huge.

    All the best
     
  12. Hanna

    Hanna Senior Member

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    I am too weak to review all the pages that deal with LDN, and maybe there is already the answer to the question I am going to ask... I would like to know if there are some studies/reports that have designed specific subsets of ME/CFS patients likely to be better responders to LDN therapy.
    I belong to the EBV sudden onset subgroup, with amybiasis infestation one year prior to the illness (diagnosed 1998, 25 on Karnovsly scale). Thank you very much for your reports.
     
  13. perovyscus

    perovyscus

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    Hi, Hanna. It's been a while, I know, but no CFS-specific trials of LDN exist, and fibromyalgia trials have shown mixed results for fatigue improvement.

    Case studies show 100+ mg dosing of naltrexone, it's more than merely interesting how poorly it's metabolized in more than the occasional patient.
     
  14. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    hello hanna

    people who have less DPP-IV enzym activity generally benefit a lot from LDN. Some people notice they cannot digest gluten anymore as they did in the past. Also people who have tendency to consume a lot of opiates (gluten, bread, pasta, cookies) or painkillers derived from opiates will benefit a lot from LDN.
    If you had a lot of ear infections as a child, tend to have allergies, prone to hyperactivity or if there is autism-like behavior, easily have a lot of physical pain or needing a lot of affection to feel comfortable, you are a good candidate.
     
    ahmo likes this.
  15. future_man

    future_man

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    Hello all,

    A health care practicioner I'm working with recommended that I try LDN for my CFS symptoms. I ordered some from a pharmacy which I'm current waiting to receive. However, I have a couple of concerns about starting it.

    First of all, sleep has been a major issue for me and reading the reports of insomnia that some of the others have has, I'm concerned about making it worse.

    I'm also hoping to minimize the long term usage of anything, and wondering if starting on LDN means that I'll need to take it indefinitely. Or does it help some people recover so that they can eventually phase it out?

    Lastly, I wonder if something like LDN ends up masking deeper issues which need attention?

    Any thoughts or experience along these lines would be appreciated.

    John
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    future_man

    Most people do get some insomnia for a few days when they start LDN, but it passes quickly for most. I got it every time I raised my dose, but just for a few days and took extra sleep supps for that period. Some docs seem to start patients on doses that are too high though. Most ME/CFS patients seem to need to start with really low doses--.5 mg to 1.5mg.

    I don't think LDN would mask things because it really just modulates your immune system. I think some people take if for a while and then stop. I have used it for several years because it helps with a number of things including inflammation.

    It is probably not enough to get you out of ME/CFS, but for many it helps with some of the symptoms.

    Best wishes with it,
    Sushi
     
    ggingues likes this.
  17. future_man

    future_man

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    Thanks for the reply Sushi. Starting low and going slow seems like the right approach for me.

    Inflammation and possible chronic infections are both things that I hope to address.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I know people say they feel better on ldn but any seen increases in immune funcyion eg nk numbers and or function and neutrophils? ?
     
  19. Sparrowhawk

    Sparrowhawk Senior Member

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    West Coast USA
    Bumping this good question from heapsreal ... And along the same lines, anyone seen specific lowering of viral antibody or any other labs along those lines? I read some of the thread and people who respond get lower pain, andmore energy which is great. Was curious if immune modulation by LDN also helped get rid of the viruses.

    Also what is the exact name of the Yahoo group on LDN?

    Thanks.
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A lot of us who have taken LDN for a considerable length of time are also taking other things that would affect immune/viral and other tests, so we can't separate out the response from LDN.

    Sushi
     
    ggingues likes this.

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