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LDN Experiences

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Hugocfs, Dec 19, 2012.

  1. Hugocfs

    Hugocfs Senior Member

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    My cfs doctor is starting me on lowdose naltrexone (ldn). She is having me start at .5 mg with the aim of getting me to 1.5 mg after a couple of weeks. I was just wondering what others have experienced with ldn, both positive and negative. My biggest problem has been exercise intolerance, and I am especially interested if any improvement has been seen in this regard. You can PM me if you don't feel comfortable posting in the forum.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    There are a lot of threads on experiences with LDN--you might want to check them. This search engine isn't good with subjects as short as LDN, but if you use Google to search and put Phoenix Rising in the subject, you will find them.

    Sushi
    Marianarchy likes this.
  3. RUkiddingME

    RUkiddingME Senior Member

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    Hi Hugocfs;

    I started LDN in April and I don't plan to go off it any time soon! :) I'm not sure what it would do for exercise tolerance but for me it gave me some life back. I got sick in 2009, within 10 months I was already in a wheelchair with extreme weakness and difficulty standing.(was previously very physically active) Luckily I don't have any pain. From September, 2011 to April 2012 I was completely bedridden with some days having to be spoon fed. I started LDN in April, 2012 at a dose of 1.5 mg. I kept on this dose for 5 days during which sleep was a little weird with very detailed dreams. After 5 days I upped my dose to 3 mg. That next day was the best day I had in 8 months. I was able to go down our stairs standing up!!! and felt like I had a bit more energy. I was supposed to go up to 4.5 but when I tried that dose for 4 days I didn't feel as good as I did on the 3 mg, so I stayed at that dose. I still crash but since that time I crash, being completely bed ridden for 2 to 3 weeks at a time, not 9 months!! LDN supposidly also acts as an immune modulator so I plan to stay on it. It has not increased my low natural killer cell count since being on it but the little bit of life it has given me is so worth it. With LDN the results can be seen fairly immediately like it did for me. You can go on youtube and look up the LDN network channel with tons of testimonies on , http://www.youtube.com/user/theldnresearchtrust,and the following two sites as well http://www.lowdosenaltrexone.org/,http://www.ldnaware.org/. Hope this helps and good luck!! :thumbsup:
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    How many who have access to nk testing have seen this improve with LDN??
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I get NK cell testing but only started after taking LDN for a year or so, so I can't say if it is improved but the first test wasn't bad and it has gotten better since, but I am also taking other things that effect the immune system.

    Sushi
    heapsreal likes this.
  6. RUkiddingME

    RUkiddingME Senior Member

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    My NK cells were 6 before LDN and 9 after 7 months so certainly not as much as Immunovir would provide from what I've heard (30% increase). My doctor wants my NK cells at at least 60 and hopes that Valcyte will increase it once my HHV6 and EBV are under control.
    heapsreal likes this.
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I have been on LDN for almost 3 years now, I am exercising more and more, I increase in small doses. Been ill almost 10 years now, I also do high doses of Vitamin D, and have my blood levels checked regularly. LDN was not the only thing I changed, I had a major flare and was out of work for nearly 3 months, and wondered if I would ever be able to work again, I was in really bad shape. I was tired of changing 1 thing at a time, and taking weeks to months hopeful for some relief, but it never seemed to happen, so I went "nuts" changing all kinds of things.

    GG

    PS I did the 2 day in a row exercise test about 2 years ago, and it showed lots of impact from my illness, I think I would do much better on that test most days now.
  8. Creekee

    Creekee Senior Member

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    Hi Hug!

    I've actually started and stopped LDN three times in just over a year. Have stopped only because of medical procedures that might include opiate painkillers. I will definitely start again as soon as my over-crowded medical schedule allows. ;-)

    The very best news for me was that I went from almost completely bedbound to working several hours a day within a month of first starting the LDN. So for me, yes, energy was greatly improved.

    The bad news is that each time I start from ground zero, I go through a period of dramatically increased body pain. Strangely, it's worst in my large thigh muscles. Have no idea what that's all about, but it's consistent with each start-up. Lasts a couple weeks and then fades back to normal.

    My best advice is to increase your dose very gradually. I'll probably start myself at .5 and increase by .5 every three weeks next time.

    Hope you see a big increase in energy. Will be interested to hear how you do!

    Emily
    lnester7 and ggingues like this.
  9. Hugocfs

    Hugocfs Senior Member

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    Sushi, I tried the search engine without much luck. Thanks for the tip on Google. Hugo
  10. penny

    penny Senior Member

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    This is a repetition of what I've said elsewhere, but my experience with LDN -
    good (noticeable with short term use, all but the last item continues long term):
    - reduced pain levels (no specific type of pain, but more like the 'volume' knob on my pain perception was turned down a notch or two (this helped my sleep too I believe)
    - slight improvement with OI
    - milder crashes
    - mild euphoric feeling with initial startup and sometimes dosage increase (a feeling of all being right with the world)

    good (long term), these aren't all due to LDN alone, like GG LDN isn't the only factor in my treatment regime, but I see LDN as an integral part of that regime. But in the year and a half since I started LDN:
    - significant improvement in sleep quality
    - significant decrease in pain
    - significant increase in functioning and decrease in frequency/duration of crashes
    - significant improvement in hyperstimulation symptoms
    - improvement in cognitive functioning
    - improvement in OI
    - improvement in endometriosis (possibly unrelated, but who knows...)

    bad (all short term):
    - MILD sleep disturbance with initial startup and dosage increases
    - I think some mild nausea (lasted maybe a month or two?), not wonderful, but not that bad - never bad enough to cause me to be unable to eat (I think I just had a narrower range of what sounded good and ate more out of obligation than desire), or to even come close to throwing up
    - when my dosage is too high, excessive daytime sleepiness (different from fatigue), depressive feelings/anhedonia. This can happen if I rapidly increased my dose, or if I took a little too much for a longer time and it built up in my system. These symptoms clear up pretty quickly once I dial back my dosage.

    I don't try to exercise as I'd rather use my energy for 'doing things' so I can't specifically address exercise tolerance, but I am certainly able to be more active (which may be the same thing - or at least similar).

    Also you might want to try searching on 'naltrexone' usually someone will use the term in a thread about LDN and it's long enough for the PR search engine to work on.

    Good luck!
  11. lnester7

    lnester7 Seven

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    Take between 9pm and 3am.
    I am glad somebody mentioned the body pain for the first days. Is brutal!!! But getting better per day, the pain is decreasing (still in the barely tolerable category) but energy increasing.

    I am going to keep on it. Good luck.
  12. Hugocfs

    Hugocfs Senior Member

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    Hi Penny,
    When I use the term exercise intolerance, I am using it very loosely, meaning being able to walk more than a very few minutes without my legs being tired for extended periods of time or even crashing. I can't even consider 'formal' exercise at this point. Thanks for your long feedback.
    Hugo
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    U have probably tried it but ribose, creatine monohydrate are supps athletes use to increase their performance which may help u if u havent tried them before??
  14. penny

    penny Senior Member

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    Yeah, and you're right, in our context daily activities of living are basically exercise! All the best.
  15. Hugocfs

    Hugocfs Senior Member

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    Hi Heaps, yes I tried them before with no impact at all. I even tried the d-ribose twice. Hugo
  16. Hanna

    Hanna Senior Member

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    Hi all,
    I plan to try LDN and am searching for a reliable source from the net. I would be glad if someone could tell me which firm selling and shipping it abroad?
    Thanks a lot,
    Hanna
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  18. Hanna

    Hanna Senior Member

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  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I have heard of All Day Chemist and I think there is a source in Mexico as well, not sure how reliable they are now though.

    GG

    Try this Dr perhaps?: http://www.co-cure.org/ISR_ALL.htm
  20. lnester7

    lnester7 Seven

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    How long is the sleepiness suppose to last during day when one take LDN???

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