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Positive Clinical Trial Results For Low Dose Naltrexone In The Treatment Of Autoimmune Disease


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Rama, i sent you a message but i dont know if it worked as my ipad displays the message box only partially. Theres a guy i met online who is from brissy and had ank spond - he took LDN and it went away! The facebook group is called "Got endorphins?(low dose naltrexone)". He was so impressed with the drug he started up his own LDN company.

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  • 4 weeks later...

I havent yet as Im struggling with POTS very badly at the moment so anything that could potentially worsen it is probably not a good idea for me right now. Ive done a lot of reading on it. Basically it seems to make some improve with CFS (and I assume many of these with POTS) but actually makes a few go backwards. its worth a shot but for me most of the time my ank spond is only a minor inconvenience and even at its worst its just pain, not dizziness, and all the rest of the POTS presents that I find SO much more disabling...

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I was going to start it up, but then I got sick and with the holidays I just didnt want to start anything new. Basically waiting to get into Mayo first and if they come back with nothing new, I will start it back up. You have to have patience with those types of meds, and I just dont have that right now lol

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  • 3 months later...

I'm just about ready to take it. I have ME and peripheral and autonomic neuropathy. I am in the UK and LDN is not licensed here yet, so I am having a telephone consultation with a registered doctor and then the liquid form of LDN will be shipped to me from a pharmacy in Scotland. I will start on a very low dose and all being well will eventually work up to 4+mgs. I've been reading some great results from people.

As my ME started with Glandular Fever, I am hopeful that a drug that works gently on the immune system will help me with pain etc.

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Ok, ive been on LDN at 2mg for a couple of months now. Although im not properly diagnosed, i think i have hyper pots although i dont seem to get high bp anymore (it gradually decreased from high to low over 18 months). Because my pots was sudden onset im 99% sure i have AI disease. So anyway, here's whats happened on ldn.

1) i feel happier (i think its better than avanza as an antidepressant)

2) my joints hurt less

3) i can generally speaking do about 20% more every day

4) my orthosttic chest pain has decreased

5) my orthostatic tolerance has improved

6) i feel less tired and jittery

7) my vertigo has reduced

8) my dizziness has reduced ( i am going to trial coming off florinef soon).

9) i would say it has improved my health from about a 3/10 to a 4/10.

Having said that though i also started an alpha lipoic acid formula, arginine, plus coq10 at a similar point in time so i guess i cant say for sure which of these things caused the improvements.

Only downsides of ldn are:

1) its hard to get prescribed.

2) The first few weeks you tend to wake in the night.

3) in the first month your immune system behaves strangely- i got mouth ulcers (this immune system upset is a known effect).

WRT BP and HR. i dont know if these have improved. Its hard to compare over time as im taking so many things and i would have to standardise the ime of day etc. i feel less dizzy standing but my heart rate doesnt seem to be much different.

I will keep everyone posted on this as im very excited about my progress on LDN. My partner keeps saying he's seen a big change in me but maybe im just less cranky and thats what hes commenting on lol.

Btw, 2mg is a tiny dose. Most people take 3.5mg. I will up my dose shortly.

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Hi Annaliese,

I am having improvement with LDN too. I had this lovely feeling of well being on the 2nd day and I've stayed that way. I've been on 4.5 mg for seven months now. At the five month mark I did have bad stomach pain and headache but my doctor backed off the dose to 3 mg temporarily and it went away. Don't know if it was related or not.

This was prescribed by my physiatrist for fibro and it really works at lessening my pain, I love this stuff. I do not see a difference in my BP or HR but I do have much more energy and hardly any fatigue. Which is a pretty big deal for me LOL. I am glad it is helping you!

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I have been on LDN for a couple of years at 4.5 mgs per night. I never had insomnia but had great, vivid dreams the first few nights. I still have a few sleep problems but overall, it has improved my sleep. Easier to stay on the normal circadian rhythm once I get on a good schedule.

Started slowly and ramped up to 4.5 mg. I have breakthrough pain if I drop to 3.5 mg. it resolves all of my pain - joint, muscle, back. The only thing it doesn't do is handle my pain when I am overactive or bending down too much (I have spinal stenosis).

I feel that it has also make my urticaria better and my sensitivities to foods and chemicals a little better.

I do not have any improvement in my POTS symptoms but I wasn't expecting to - I never heard of anyone's POTS getting better or worse on LDN. That is interesting - I wonder how that would work.

I do not have an increase in energy which others have reported. This was disappointing but that's okay.

My understanding is that it's chemical structure is similar to the body's own endorphins so it blocks the endorphin receptors. Then when you sleep, the endorphins your body has produced go right past those blocked receptors and are used in the body. I think the longer you have unresolved pain, the more your body produces pain receptors. I went years with unresolved pain so I hope that in the future, I might see an energy increase when there is more in my system to be used by my body.

It does not work if you don't take it during a certain time frame at night. For example, if I stay up late and take it at 1:30am, it doesn't work the next day. I have breakthrough pain. You are not supposed to be able to take Tramadol (an atypical opiod) but I have taken one dose with no ill effects. I very rarely have to do this - maybe 3 times in 2 1/2 years. You are also not supposed to drink alcohol (which I don't) but I have had a bit of Amaretto and I have had a margarita with no ill effects. Casein (dairy protein) also is a no-no as it keeps it from working correctly. I forget why but it's on the main website.

Lastly, I order my tablets from overseas and make my own liquid suspension. One 50mg tablet to 50 ml of water, kept refrigerated. I pay $16 for 3 months not including the shipping which I usually split with friends who are also ordering.

It is one of my desert island supplements.

Marti

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I've never tried Turmeric, but I've been on LDN for a few months now with good results. We built up slowly to the full dose of 4.5 mg/ day. I also had a noticeable difference in the brain fog, it gave me my personality back. Also, my fatigue is much better. I still have times when I'm fatigued but not as bad as before. I just hope it continues to work for me.

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My ANA is negative and so are thyroid antibodies. So I assume I don't. Plus, I was worked up by a great rheumy two years ago and he said there's no sign of it. I have fibro but that is not autoimmune, it is CNS.

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