Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group LDN for Fibro

Ldn getting some attention from Stanford researchers


http://www.cisionwire.com/glasgow-health...-ldn-conference

thank you for this

this is pretty awesome. thanks so much for posting this. they say i have fibro as well as AS. i wonder if calcium suppliments help with the little pockets they are talking about? and i guess im going to look for some things that increase saritonin [cant spell] to my brain. though i have read too much saritonin can result in a headache. as for the Ldn...i thought i saw somewhere on forums here that ppl use it for AS too? i could knock out all kinds of stuff with that!!!! forget the weed... pass yhe LDN!! EDIT: the forum i refered to was abut 'LDA' not 'LDN' .. theres the brain fog for ya :]

that's one of the things i like about the LDN, even if they haven't made up their mind which autoimmune disease i have, seems like it should work for any of them. and as you stated, fibro often goes along with other diseases that cause pain, so if it knocks that out too, 2 birds with one stone, so to speak.

and i haven't noticed any side effects. though wonder if my getting migraines more than i think i used to is related to taking LDN, hmm? never thought of that before. but if i take care of myself, can still prevent migraines most days, and am pretty good at getting rid of them, but still, i do seem to get them more easily lately. LDN connection? hmmm? still if so, worth the tradeoff. still get inflammation in my tendons and ligaments, but now LDN helps body get rid of that inflammation a lot faster.

so you are on LDN? what type of dr. prescribed it to you? as for your headaches ummm .. i was reading about food sensitivities and it was either 'tannin' or 'histamines' that increase saritonin to the brain. tannin found in tea and beer and im sure other things i just cant remember. my boyfriend gets migraines from beer and tea and he doesnt need much to cause it.

have had migraines most of my life, have figured out most of my triggers: hormones, high stress to low stress (not high stress though, but rather the crash), traveling, the heat, hunger. they are the main culprits. but lately, last few months, those things set them off easier, and now will pay more attention.

actually for me, tea relieves my migraines, not the tea itself, but the caffeine, just about the only time i have black tea. otherwise, daily its herbal, occasionally green. tonight, just a little migraine from the days events, so had some green tea, and that knocked it right out.

as for the LDN: it was my rheumy. but here's the story. i am his first patient to be allowed to try it. and i think the reason he relented was that a year and a half ago he said, "let's not worry about what you have (a dx), let's just worry about treating it." and i said, "fine." but then his solution was to put me on a NSAID (aleve) even though i told him that naproxen (and about a half dozen other NSAIDs and Cox2 inhibitors) gave me both gastritis and edema. but he insisted, said there wasn't anything else he could do for me, said if i just took two prilosec a day instead of just one, i'd be fine. i knew that wasn't going to be the case, but felt my hands were tried. i was actually delighted that i could tolerate the aleve for 2 weeks, they were great weeks, took it around christmas time, could go shopping without my feet or SI killing me. but then the edema started to take over. so thought, "ok, i've proven the NSAIDs do work but give me side effects (though i tried to tell him that but he wanted to see it for himself), so now it will be on to other drugs. but his solution was a second NSAID, but one pill gave me the edema, so on to, you guessed it, a third NSAID, but one pill bothered my stomach. so at this point, he tells me, by way of the nurse on the phone, he doesn't actually talk to patients on the phone, well, not me anyway, so the nurse tells me, "the doctor says he doesn't know what else to try. nothing else." so i tell her, "what about SSZ, MTX, biologics, LDN........" but i really didn't want the first two. i get really really nauseous to sulfa antibiotics and even the rheumy agrees that the MTX would probably flare a lot of my current problems, but that still left the biologics and LDN. well, he won't even consider the biologics if we don't know exactly what my dx is; so much for "let's just treat this." but since i reminded him of his original promise to me to treat me and how he kept saying things about not wanting to give risky (side effect wise) drugs, and was able to take in scientific peer-reviewed journal articles pointing up both the efficacy and safety of the LDN, that's how i was able to persuade him. i really had to get my ducks in a row, but was at least able to persuade him, in the end, that's all that really mattered. but it did take quite awhile. while it was pending, i had made an appointment with a GP who prescribes LDN; the local compounding pharmacy, where i was already getting my progesterone creme, gave me her name. but once the rheumy prescribed, i canceled the GP appointment; she's rather expensive and doesn't take insurance as she practices a mix of western and eastern, traditional and alternative medicine, which the insurance companies don't pay for. though now that my current GP is retiring, i'm thinking about going to her anyway, so long as her medicine really is a balance between the different kinds, i'm still a scientist at heart, and still believe in western medicine to a large degree, supplemented with alternative methods. will be interesting to see if the rheumy will keep prescribing it when i go to my appointment in june. he should, since i have proof its helping, but its been harder and harder to get the prescriptions filled lately, but that's another story.........

wanted to add, though the LDN has been great for helping the inflammation to dissipate, still, my SI would become too inflamed, then too unstable. but found a solution to that. flector patches. so long as i change it every ~12 hours, and where one almost continually, my SI feels a lot better. still irritated if i really push it, like mostly sitting for two hours today during our universities convocation. but after leaving there, walking around a bit, it settled down pretty well. so things still get inflamed, but the LDN helps the body rid itself of that inflammation really fast. but the LDN alone wasn't enough for my poor SI, but the flector patches have been amazing. keep trying to test that theory regarding the flector patches. since the beginning of april (~ 2 months now) will where them for a week or two, then try to take a break from them. but within a day or two of that, it is clear that i need them. have done this probably half a dozen times over the last 2 months. usually we do experiments in triplicate, so that's already more than triplicate. the LDN results are a bit more subtle because they help in the healing process vs the prevention, but the flector patch results are dramatic. without them, i can feel my SI being incredibly unstable. with the flector patches, the SI is stable, not inflamed, and while not completely painfree, close to it. just don't know how long this combination of drugs will continue to work: zanaflex for muscle spasms, flector patches for the SI, and LDN for helping the body rid itself of the inflammation. but for now, i feel like i'm getting some relief. i'm still careful, still try to avoid all the things i've learned to avoid over the last 10 years, just that i have a bit more success with all these habits.

i put in reply and it didnt post hmmmm. anyway i try again. the patch thing seems better than pills in so many ways. im glad you found a combination thats giving you some relief. im a spasm from neck to pelvis so i feel a little discouraged that it didnt do much for your stiff muscles. but at this point i take any relief i can get right? =]

What does LDN stand for? I am kind of lost on this one.

low dose naltrexone

most in depth thread, a lot to sift through, but a lot here:

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=337437#Post337437

and if you go to the pharmacy forum, you'll see a few other LDN threads as well.

hope this helps.

naltrexone at higher dosages (50 mg) blocks the opiate receptors to treat narcotic drug addiction, also used for alcohol addiction

but at the low dose (3-6 mg), 3 for MS, 4.5 typical, up to 6, blocks opiate receptor just a bit, causing the body to produce more endorphines, serotonin, which allows the body's immune system to work the way its supposed to, or so scientists think.

but more and more evidence to its power. so used to treat a variety of autoimmune diseases, a lot of success for MS, some for crohns. even seems to work on fibro as drizzit linked, have read its use for cancer and hiv as well.

the way i considered it, for the price, and the safety of the drug as far as they know, it was well worth trying. so glad my doctor let me try it. not the "it changed my life" response that i see some people on biologics report, but every little bit helps and it is cheaper and safer, and most importantly for me, being the pragmatist that i am, its the drug my doctor let me try.

hope this helps.