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Woolygimp

(ldn) Low Dose Naltrexone Therapy?

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I surprisingly came across some information regarding a therapy involving small doses of Naltrexone, normally used to combat drug addiction, and it's benefits on several autoimmune related conditions. There have been several case studies of people with varying autoimmune disorders showing great improvement on the therapy, and the results so far have been said to be extremely promising. Many more studies are currently being planned. It's even being used to treat Fibromyalgia and Chronic Fatigue Syndrome, along with RA, MS, Crohn's, Sjogren's, and so on.

Beta-endorphins are important regulators of the immune system. Naltrexone, which is a pure antagonist to opiates, causes an artificial blockade of the endorphin/opioid receptors in the brain. However, unlike the normal (~50mg) dose of naltrexone used to treat drug addiction, which maintains this blockade continuously for 24 hours (preventing any derived pleasure from taking the forbidden drugs), low dose naltrexone (~3mg to 4.5mg) blocks the endorphin receptors for only a couple of hours. During that time, endorphins fail to attach to the receptors and the body compensates by creating more endorphins. (Note that Dr. Bihari prescribes LDN to be taken at bedtime to take advantage of the body's pre-dawn boost in endorphin production.) Once the low dose naltrexone dose has been metabolized, the body is left with a "normal" amount of endorphins as compared to healthy controls, which consequently "normalizes" the immune function. The link between endorphins and immune system regulation is a good candidate for more research.

I've spent the past few hours doing research as this is the first time I've even heard of it, and there are a LOT of success stories out there. Coincidentally, when going on LDN therapy one of the things they recommend is a gluten-free, casein-free diet. This drug, supposedly, has a demonstrable efficacy, with several doctors noticing very real improvements in several of their autoimmune crippled patients.

In people with Crohn's there have been documented cases where the intestinal lining has healed following LDN therapy: http://www.ncbi.nlm.nih.gov/pubmed/17222320

Now I would've thought there would at least be a couple threads about this on celiac.com but I've been unable to find any. Surely someone out there with celiac has tried this?

I'm pretty sure my Celiac has caused an ongoing autoimmune reaction that just won't disappear, i.e. damage to my endocrine glands and minor Sjogren's/Thyroid problems. I'm wondering if I'm a candidate for this stuff. Not only that but what effect would it have on my Celiac's to begin with? I haven't found many articles linking Celiac and LDN together which is a bad sad, especially since Celiac is impossible the mother of all the other autoimmune disorders.

Here's a good website for information regarding the drug:

http://www.lowdosenaltrexone.org/

A link to clinical trials:

http://www.lowdosenaltrexone.org/ldn_trials.htm

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I find this interesting

"Coincidentally, when going on LDN therapy one of the things they recommend is a gluten-free, casein-free diet. This drug, supposedly, has a demonstrable efficacy, with several doctors noticing very real improvements in several of their autoimmune crippled patients."

For me it kind of invalidates the therapy research if both are done at once. Since the gluten-free diet alone was enough for my autoimmune issues to go into remission how many would have seen the same result on the diet alone?

It is interesting though and when I have more time I will check out the links.

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I surprisingly came across some information regarding a therapy involving small doses of Naltrexone, normally used to combat drug addiction, and it's benefits on several autoimmune related conditions. There have been several case studies of people with varying autoimmune disorders showing great improvement on the therapy, and the results so far have been said to be extremely promising. Many more studies are currently being planned. It's even being used to treat Fibromyalgia and Chronic Fatigue Syndrome, along with RA, MS, Crohn's, Sjogren's, and so on.

I've spent the past few hours doing research as this is the first time I've even heard of it, and there are a LOT of success stories out there. Coincidentally, when going on LDN therapy one of the things they recommend is a gluten-free, casein-free diet. This drug, supposedly, has a demonstrable efficacy, with several doctors noticing very real improvements in several of their autoimmune crippled patients.

In people with Crohn's there have been documented cases where the intestinal lining has healed following LDN therapy: http://www.ncbi.nlm.nih.gov/pubmed/17222320

Now I would've thought there would at least be a couple threads about this on celiac.com but I've been unable to find any. Surely someone out there with celiac has tried this?

My doc told me about low dose naltrexone about a year ago when they thought I had RA....she currently has several patients that she has prescribed it to and she says it is really surprising her how well some of them are doing on it. She told me one of her patience can now work in her garden again and she hasn't been able to do that for years and when she had her follow up with the rheumotologist and had XRays of her hands that doc was so amazed in her improvement that he wrote her a letter stating that whatever she is doing to keep doing because he just couldn't believe the improvement he said it basically looked like there were no signs of RA anymore. Personally can't vouge but I have heard a lot of good stuff.

I'm pretty sure my Celiac has caused an ongoing autoimmune reaction that just won't disappear, i.e. damage to my endocrine glands and minor Sjogren's/Thyroid problems. I'm wondering if I'm a candidate for this stuff. Not only that but what effect would it have on my Celiac's to begin with? I haven't found many articles linking Celiac and LDN together which is a bad sad, especially since Celiac is impossible the mother of all the other autoimmune disorders.

Here's a good website for information regarding the drug:

http://www.lowdosenaltrexone.org/

A link to clinical trials:

http://www.lowdosenaltrexone.org/ldn_trials.htm

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My husband still suffers symptoms of celiac disease (intestinal, DH) even though he has been on a strict gluten free diet for over 15 years. He recently saw a nurse practitioner who prescribed gradually increasing low dose naltrexone (LDN). Although it is still early days, he reports his gut not being as fragile and his DH has cleared up somewhat. Fingers crossed it continues to work. He is at a 3mg dose currently, moving up 0.5mg each second week. 

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The intestine has many neurons and receptors that control food movement within intestine. Blocking these receptors may improve the symptoms of IBS.

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I started LDN a few months ago to help fix my small intestine bacterial overgrowth.  A good portion of celiacs have this issue.  LDN is a prokenetic meaning it keeps the blowers flowing.  It’s a big factor in treating SIBO properly.  I have 5 autoimmune diseases so that’s why we choose LDN for my prokenetic.  We are hoping it will help everything else.  It sure has helped my SIBO treatment!

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I mentioned this treatment on another thread a couple of weeks ago and the response?  Crickets!  😉

I think there are many people who shy away from anything that the mainstream AMA crowd doesn't endorse because it's hard to know if these treatments are legit or not.  That is a legitimate concern.  However, LDN is an FDA approved drug, for what that is worth, that was discovered to have immune modulating properties at very low doses.  There are many drug companies working on these types of drugs now, but nothing major has been brought to market.  Not sure if I would use them anyway as the drug companies are now cartels that are holding Americans hostage with pricing.  🤑

I decided to try LDN about 2 months ago because I was having an uptick of symptoms of common problems for those of us with multiple AI diseases.  Since 2014, I started having a minor problem with hives, that has progressively gotten worse.  For me, the outbreaks are solidly linked to my mold allergy.  If it gets swampy and humid outside, I get hives.  If the weather front clears out with nice, dry weather, they go away all by themselves, only to return for good in summer here in New England.  I am also having some thyroid flares which has not happened in YEARS.  I have been gluten free for 14 years and am a diagnosed Celiac.  I also have Sjogren's, Hashi's thyroid disease and Reynaud's.  My parents were like 2 genetic bombs.  😧  Stress is also a factor right now as my husband and I oversee the care for both of our elderly mother's and we both still work, although I am retiring at the end of September.

As far as results, there has been some small improvements.  I know it can take a long time for real results to happen but there is also the realization that this therapy does not work for everyone.  The hives, when they appear, are not as severe.  In fact, they do not become raised and angry, just more like red spots or patches. They also clear up faster.  That has made me happy.  My thyroid numbers have improved in that my T3, which had been in the normal range but on the low end, is now in the optimal zone.  I have not increased my dosage.  I still have some symptoms of thyroid dysfunction with splitting nails and dry skin but I also have Sjogren's so it's hard to tell which disease is causing my symptoms, due to the overlap issues with AI diseases.  I am trying to be patient to see if the LDN shows more improvements over time, if not, there is always the sucky chance I have triggered for something else.  I do not feel sick or lacking in energy, just some symptoms that have not reared their ugly heads in years.  I am also older, which just does not help. 😠  I have zero side effects from taking the 4.5 mg dose I am now on, which I worked up to slowly.  The only noticeable thing has been vivid dreaming.  Not nightmares, but really vivid dreams.  That does not bother me as you don't dream until you reach deep, restorative sleep so I guess my sleep is good.....I just need more of it!  Yes, I know how important sleep is but I plan on correcting that when I retire.

That is my 2 cents worth, albeit a bit long.  I am happy someone else brought up this subject and would like to hear results from those on it, over time.  Having multiple AI diseases is not easy and the medical world have a long way to go for valid treatments.  I refuse to take any immune-suppressants.  My symptoms are not that severe or life threatening anyway.  We need meds that will slap our immune system into a more normal state. So far, LDN is the only one worth trying.  It is inexpensive too.  Oh yeah...I do follow a strict gluten-free diet with no cheating but aging and stress can take their toll and we cannot always control that.

Happy 4th of July to my fellow Americans!  🎆 

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On 11/11/2009 at 8:38 AM, ravenwoodglass said:

I find this interesting

"Coincidentally, when going on LDN therapy one of the things they recommend is a gluten-free, casein-free diet. This drug, supposedly, has a demonstrable efficacy, with several doctors noticing very real improvements in several of their autoimmune crippled patients."

 

For me it kind of invalidates the therapy research if both are done at once. Since the gluten-free diet alone was enough for my autoimmune issues to go into remission how many would have seen the same result on the diet alone?

It is interesting though and when I have more time I will check out the links.

Good point, Raven!  I did not start on this med to combat any Celiac related issues because my gut is still doing just fine, 14 years post gluten-free.  However, when you have multiple AI issues, you can have periods where you have flares or other symptoms that I don't always think are related to Celiac.  I think some posters on here assume that these will go away for them at some point but if they are having thyroid symptoms, it just may mean they have thyroid disease that goes along with Celiac, which needs to be treated with thyroid hormone.  Same with other AI diseases.  I still have Sjogren's issues with my eyes that are from collateral damage.  I manage them as best I can but I doubt that LDN will reverse all that damage.  I am just looking for something to modulate the immune system into a more calm state to help the annoying symptoms I am having.  If not, I guess I'll have to see if I have acquired another AI disease.  😱

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