Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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New to LDN for CFS... Tolerance? Where to get?

Discussion in 'General Treatment' started by Jeremiah, Aug 14, 2016.

  1. Jeremiah

    Jeremiah

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    Does this stuff last without increasing the dosage? In my particular case, I have a pretty long history of trying things (drugs, supplements, activities) that work for just a couple days and fizzle out. I've given up on some things, and in other cases stayed faithful for many months, but there is ultimately no difference. The only thing that has consistently helped me out as of late is fasting throughout the day, eating no more than 50 calories an hour.

    After 15 years of trying things, LDN initially seems like a breath of fresh air. Only learned of it a couple weeks ago. However, it sounds like any other drug I've taken... It makes you high by releasing endorphins by doing something chemically to keep the endorphins in your system. Do this over and over again and the body compensates by shutting things off. For me, within a couple days. I can't imagine this would be any different?

    Also, is it really all that hard to get this stuff prescribed? Do I really have to see a specialist that is listed on the Internet? I'm sure I could get the folks at my local sleep disorders clinic to prescribe this? Or any physician?
     
  2. frederic83

    frederic83 Senior Member

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    I had this problem of supps/drugs that only work a few days, now I'm mostly sensitive to everything. I think you will experience the same thing with LDN, it will only help for a short time. I tried it and that is what happened. Then it is possible that the benefit will stop, or you will just feel worse. That was my usual reaction with supps and increasing the dose (you can't overdo it with LDN because the benefit is lost otherwise) does not work in my case. But I think it should be tried, because we do not have a lot of alternatives.

    To get the drug, and if it is hardly available where you live, an online pharmacy is ok, there are some safe sites. Although, you can have some problems with the custom. Where do you live?
     
  3. Jeremiah

    Jeremiah

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    I agree... probably won't work but it's probably worth trying! In the US I imagine it shouldn't be hard to get it prescribed. I just don't want to pay the out-of-pocket some of the specialty alternative therapy clinics charge.
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    Any doctor in the US or a nurse practitioner can prescribe it. I get the 50 mg tablets from any pharmacy and dissolve them in 50 mls of water. Works as well as the compounded version for me and costs about $1 per month. I have taken it for years and never got tolerant to it. It does a lot more than boost endorphins temporarily. Most do find that they have to titrate the dose up very slowly. It took me 4 months.
     
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  5. JES

    JES Senior Member

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    LDN works in a different way than most supplements. It actually blocks endorphin receptors, and the "rebound" effect you get after this blockage is what produces the increase in endorphins. So a typical dosage like 3 mg would block the receptors for a couple of hours, then your body would respond by calling more endorphins to be produced to compensate for this blockage, and few hours later you'll benefit from this effect. I have used LDN for 3 years and it still has some positive effects on sleep and pain. I have even seen results that suggest these endorphins remain permanently higher after you completely stop LDN.
     
    frog_in_the_fog likes this.
  6. Firefly_

    Firefly_ Senior Member

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    I asked my GP to prescribe it and he did, I also get the 50 mg tabs and compound it myself. Seems to be great for some people and not so much for others so you'll just have to try it and see for yourself. Fwiw I didn't have any troublesome side effects and quickly titrated up to 4.5 mg and am at 6 now (been taking for over a year without developing a tolerance). I feel that it helps overall with my fatigue and general wellness such as it is. Doc wants me to slowly go up towards 10 mg to see if it will get rid of my fibro pain. We'll see. Anyhoo, that's my 2 cents. Good luck.
     
  7. frog_in_the_fog

    frog_in_the_fog Test Subject

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    I agree, if LDN works the way they say, it should have long lasting benefits after long term use.

    I have used it for a month, but not without quite a bit of difficulty. Seems the LDN causes me to wake up quite a bit, plus it makes my dreams very strange. I got it up to 3mg before I had to stop. I will try again, taking it earlier and ramping it up more slowly.

    When I picked up the naltrexone, the pharmacist asked me if I knew what it was for. I surprised him with the off-label use, we have a lot of heroin addicts around here, so he must have thought I was one of them.
     
  8. daisybell

    daisybell Senior Member

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    I take mine in the morning - which sorted the strange dreams!
     
    frog_in_the_fog likes this.
  9. AlmostEasy

    AlmostEasy

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    I developed complete tolerance to it within a month but at first it was like a miracle drug for my brain fog and scattered thoughts / memory. I have a now what seems to be, heroic ability to build tolerance to everything and anything and have done so for the past 4+ years so for me it's none too surprising. I've only heard stories here and there of people who heard other people build tolerance but I am definitely one of them.

    One thing it did was cure my impotency when I was having problems with that and so for that I kept taking it. I mean total cure. If I missed a dose it would come back. I solved that in other ways and so discontinued it. After a month or so off I tried it again and it was great for about 2.5 days then stopped working again. *shrug*

    I wouldn't ever use my case study to discourage someone from trying it but tolerance IS possible, but unlikely from all the success stories I've read.

    Good luck
     
  10. daisybell

    daisybell Senior Member

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    Did you try increasing the dosage? I now take three 4.5mg capsules daily....
     
  11. AlmostEasy

    AlmostEasy

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    You know I had thought about it since I don't think what was helping me was the opioid rebound but more the anti microglial properties.

    What was your experience like getting to that dose? Did you do it for the brain fog help? Did it stop like mine and then remain effective at that dose?
     
  12. daisybell

    daisybell Senior Member

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    @AlmostEasy initially I went slowly up to 4.5mg, but then I had to take another medication which really set me back and the benefit from the LDN disappeared. So, on the advice of my doctor I tried two capsules - trial and error on dosing times until I found that taking both together in the morning seemed to give me the best result. Then more recently I added in another one at night, which has helped me to maintain my level of activity through a more stressful period. I'm not sure I notice improvement from taking more, but I did notice deterioration which reversed when I increased the dose. I guess I will probably add another capsule in at some point....

    I think for me, the LDN helps in all areas - generally I have a larger energy envelope. I believe that it's the immune modulating effects that are making a difference for me.
    If I miss a dose I certainly notice that I feel worse the next day!
     
    AlmostEasy likes this.
  13. AlmostEasy

    AlmostEasy

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    Ok so it sounds like the benefits just maintained at a higher dose where they fell off at a lower dose. If that's what I could get from it I'd be stoked.

    With energy do you get help from brain fog at all? Gains in cognitive clarity and just general benefits to thinking properly?


    Also just to keep from derailing too hard. @Jeremiah I had my doctor put in a prescription for 10 x 50mg tabs so I have a supply for quite a while and out of pocket it was like $22 I believe. She's very understanding of my situation, not that she has any idea what is going on with me but she lets me experiment if I have studies that make sense to back up what I'm looking for.

    Also I've had 1 person I talk with order from here and successfully receive the order:
    http://www.buylowdosenaltrexone.com/order-now.html

    I found that link within PR somewhere and they vouch'd it as well. Might be worth a shot if no other option. A little goes a long way.
     
  14. Jeremiah

    Jeremiah

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    Thanks for all the replies so far!

    First of all, thanks AlmostEasy for the link. My sleep disorders specialist referred me to an opioid addiction center to get it, and I'm not sure I want to do that. I don't actually have a general practitioner for physicals and things and I don't want to get one just for the sake of this one drug. I also don't want to pay $100's to see the alternative medicine folk. I'll give this link some strong consideration.

    Beyond that, some random thoughts stemming from some euphoria I'm taking advantage of right now...

    I'm pretty sure that naltrexone's action could be described as follows... its an opioid receptor antagonist, which I think is the same thing a re-uptake inhibitor, but for opioids, both natural and unnatural. I think the latter term is more intuitive so I'll use that from now on. That means more endorphins let to roam free in the brain, and the tolerance of pain killers is reduced. Basically, if you take any pain killers, the addictive quality comes about because your brain starts building more re-uptake sites to drain away the drugs faster, which means that you feel more normal when you take an abnormal amount of drug, and feel like crap when you aren't on the drug. The naltrexone binds to these sites, reducing the number of them to a lower amount such that you can take less opioid to feel normal. The brain will also continue to build more re-uptake sites in response to the inhibition of what it has already built, but I get the impression that the rate at which the brain builds more sites is slower in response to a re-uptake inhibitor than it is to more intake of the chemical being re-uptaked.

    So, I can certainly see how this drug would work, in the same way that many re-uptake inhibitors work, to maintain your natural endorphin levels in the body. It sounds like the "runner's high" is what you would feel after taking this drug. Again, the brain would start building more re-uptake sites to make up for the excess endorphins, and as such you should technically gain a tolerance to this drug, and feel kinda crappy after coming off of it. Obviously this varies with brain chemistry and genetics. And perhaps this particular drug binds in a special way that the brain THINKS that it has the same number of active re-uptake sites, or shuts off its negative feedback response, whatever, for those folks who are able to maintain on the drug for years.

    But I'm pretty sure in my case, I'd build a tolerance in a couple days or weeks seeing as I've seen the same thing with every drug I've taken to improve energy levels in the past.

    I went on an incredibly slow 4 to 5mph jog for 30 minutes yesterday for the first time in about two months. Got a subtle runner's high which built through the evening, gave me the most refreshing sleep ever, and I'm still buzzed a whole 24 hours after the jog. I haven't eaten ANYTHING today and I'm still going. This is typical when I start running for the first time in a while. But if I keep jogging every day, the effect wears off until I no longer feel it anymore, just like any other drug I've taken. I've been very much physically fit in the past and maintained it for months, yet felt like crap the whole time! It's hard to describe this... even while feeling like utter crap I could punch out <24 minute 5k's. I'd feel like crap before, during and after. Brain fog. No euphoria. I was doing this to save my life (originally very overweight) and maintain.

    It seems that running would be a lot like taking morphine... it stimulates your body to produce more endorphins. Your body builds receptors to drain the endorphin over time... you get tolerant. I wouldn't say I get depressed when I stop running... but this is clouded by the fact that I have just recently had this revelation and was probably doing many things at the time like also drinking coffee, tea, sugar, etc. I need to experiment more with this...

    So looking forward, before I try LDN, I think I should start a rotation between stimulant sources like coffee, chocolate, tea and running.

    Each of these foods/activities seems to effect the brain in a slightly different way that the brain's negative feedback response needs to address differently, which gives you time to get high on something, stop using it, try something else, and cycle back.

    I'll have to run some experiments to collect data points over the next few months. Isolate things and test things without interference.
     
  15. AlmostEasy

    AlmostEasy

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    An antagonist and a re-uptake inhibitor are not the same and do not function the same.

    An SSRI would keep serotonin in the synaptic cleft, and the serotonin would be released from the agonism of a serotonin receptor initially. An opioid antagonist prevents the opioid from ever being released in the first place, it does nothing to prevent it from being re-absorbed or broken down. It actually lessens the amount that is ever released. It prevents the agonism. The only thing it would do is allow opioid agonists to float around outside the receptor and not be able to activate it and release opioids. Functionally there will be less while this is happening but from the anecdotal reports it seems that the rebound from this action is worth it and the antagonism may not be noticeable.

    What happens is the receptor (from what I've read) gets blocked for enough time for the body to start spitting out more opioid agonists because homeostasis has been disrupted and with such a small amount / range of naltrexone it will disappear from the receptor sites before the body clears the additional agonists out (that last part is pretty theoretical on my end) and (this part being documented) 200%-300% of the levels natural endorphins are produced in response. Almost like the Mars rover using the moon to slingshot faster into space ;)

    It's very clever.

    I could not subjectively feel this while I was on LDN and people find that different timings "work" for them, as the endorphin production happens at night time which is why people take it then, to try to capitalize on that mechanism.

    That's a pretty strange response to exercise. I typically feel worse afterwards as well, it's disheartening. I'm messed up with this disorder and still put in more effort than your average joe slob who feels better than I do 24/7 and my reward is more brain fog and muscle tension lol. Brilliant.
     

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