Has anyone tried low dose naltrexone (LDN)?

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I've read a few times that LDN can help with autism. I did a search on the sight but saw little on the topic. Was wondering if anyone has tried LDN? It seems to be a popular prescription for those with MS, Colitis, and Crohns. A little bit on this topic can be seen here :

"Can LDN Really Help Multiple Sclerosis, Rheumatoid Arthritis and Other Autoimmune Diseases?"

http://articles.mercola.com/sites/artic ... eases.aspx

And saw a new book came out on LDN.

"The LDN Book: How a Little-Known Generic Drug Low Dose Naltrexone Could Revolutionize Treatment for Autoimmune Diseases, Cancer, Autism, Depression, and More"

http://www.amazon.com/LDN-Book-Little-K ... ywords=ldn

I'm resurrecting this post. Not because I think it could cure autism (that's silly!) but because I'm trying it for a chronic migraine problem. My headaches are rather atypical and my doctor thinks the could really be the product of a yet undiagnosed immune dysfunction. I'm pretty healthy overall and I use a lot of herbs, so her logic goes that I may be holding back the full brunt of the immune dysfunction already. Anyways... if anyone has any insights, I'd like to hear them. I'm a little worried about the insomnia/nightmares side affects reported, but we'll be taking it slow for just that reason.

I'll be starting it in about 1.5 to 2 months time. I already spoke about it with length to my doctor as a possible treatment option for my severe refractory IBS-D as well as allergic symptoms such as reoccuring rashes, hives and daily full body pruritus, chronic sore throat, dry mouth, dry skin, dry nose, dry eyes which we both concluded has some allergic component to it, and possibly my IBS-D which is atypical might have an allergic component to it.

Low Dose Naltrexone in simple terms temporarily blocks your opioid receptors, when taken at 9pm, it wears off just before the early morning hours of 2 to 3 am when your body naturally releases it's own endogenous opioids (endorphins). It hijacks the body's negative feedback system and tricks it into markedly upregulating Opioid Growth Factor (also known as zeta endorphins) by around 300% and increasing your beta endorphins by around 200% as well as a number of other effects. This results in a novel immunomodulating response as well as analgesia from all the surplus of endorphins. This effect lasts about 18 to 24 hours. Because of the novel mechanism of action Low Dose Naltrexone really has a wide range of applications from autoimmune diseases(without the need of immunosuppressents) to fibromylagia to gastroenterological diseases and even certain types of cancer.

Since it uses the body's endogenous opioids it doesn't have the same drawbacks that opioid agonists use such as dependence, addiction, opioid induced hyperalgesia, or opioid induced androgen suppression.

The low dose(typically 1.5mg to 4.5mg) also avoids any risk of elevated liver enzymes, a risk of Naltrexone when used at typical doses (50mg to 300mg) for it's original indication in treating alcohol addiction.

Here are the studies I found demonstrating the evidence for the uses that I proposed to my doctor. My family doctor actually liked my idea but didn't feel knowledgable enough on the topic so I suggested he send a referral to a doctor in my area that I found who is open to prescribing LDN. Apparently by chance my family doctor was familiar with this doctor and was happy to send the referral as per my request. I have failed all the conventional treatments for my IBS and it is so severe that I haven't had a solid piece of food since June of 2015.


https://www.google.com/patents/US6194382

http://link.springer.com/article/10.100 ... 006-9289-8

http://www.sciencedirect.com/science/ar ... 2299800486

We also discussed the possibility of a mast cell disease like mastocytosis/MCAS which runs in my family on my mom's side as a possible explanation for my immune-like symptoms, a rare disease which every single doctor would have easily overlooked previously, for which I am showing many of the signs. Hopefully LDN will provide a novel treatment approach to address these symptoms that have been plaguing me.

The relative risk of side effects is negligible from my research. You may have an initial worsening of your symptoms for the first week or two before your body adapts to the increase in endorphins. You might have vivid dreams and some sleep disturbances ( although rare) as a result of the flood of endorphins during the early morning hours. If this is a problem you can just move your dose to the early morning hours when you get up, though not as effective it should still work from what I've read. The only other side effect I've read is you might have some morr stiffness in your neck muscles in the first month or whatever of treatment but that usually goes away. A small portion of patients have tachyphylaxis(common among any med that affects the CNS) and usually can be overcome by slightly raising the dose or taking a couple days off the medication every once in a while. If you have any gastro upset past like 1 to 2 weeks you can just have your pharmacy compound it in the form of sublingual drops instead to avoid the naltrexone having to pass through your digestive tract and effecting the opioid receptors in there.

Make sure your compounding pharmacy has experience with compounding LDN. You can't have the extended release version of Naltrexone or it will negate the intended effect of using LDN. Avoid calcium carbonate fillers as well as it will bind to the LDN and make it long release, again negating the benefits of LDN because it won't be immediate release and won't trigger the intended negative feedback response.

Can I just say how much I love my fellow aspies? That was exactly the kind of concise explanation I was looking for.

I'm concerned about the insomnia/dreams part. I already struggle with both. I think I'll be starting before you though. Probably tomorrow. Let's keep in touch. And if you hear of any good supports for dealing with the sleep issues, please do pass them on.

I would have began it immedately but I just started medical cannibas this week and I wanted at least a month of using cannibas before I begin LDN to differentiate the effects of the two. LDN can start to have it's initial benefits after about 1 to 2 weeks, but it may take anywhere from 3 to 9 months to get the full benefit from what I've read though I am not certain as to which diseases this would apply to. Just be ready to be patient and stick with the treatment as it may take months to get the full benefit.

I am a little annoyed that my family doctor wouldn't bother to read up on the treatment enough to feel comfortable prescirbing it himself. I understand there is a learning curve and given the resources I provided him, he likely could have become familiar with all the information necessary in what I estimated 2 to 3 appointments. on LDNresearch.org the physicians leading research in this area are even willing to correspond with and answer questions that any physician might have on ldnscience.org . I understand family doctors are overburdened but oh well. He was fully on board with the treatment and said it should be a specialist's job like my GI doctor, but honestly my GI doctor is lazy and a useless bucket of rocks and I essentially told my family doctor that while providing evidence to support that position as well. I always come with a backup plan and found this doctor in a neighbouring city who prescirbes it (as listed on one of the LDN websites which had a database of such). The problem is this doctor doesn't accept OHIP and I'll have to pay $400 for the first appointment then $300 for thr second appointment, then $160 for the follow up appointments. As a Canadian who is used to never paying a dime to see any doctor it is an annoyance but I have a large fund set aside for medical expenses. LDN which should otherwise be a dirt cheap medication (~$90- $100 CAD/month with compounding fee included) will end up costing me more than I wanted to, but at this point I am seriously ill and at my end witts for treatment options. There is enough legitimate scientific evidence for it's potential benefits to my conditions I suffer with.

The reason no typical doctor will suggest this medication is because naltrexone is LONG since off patent meaning no pharmacuetical company will bother paying the $100ms in Canada for large scale clinical trials or (last I heard $1.7bn in the US) to be able to get it approved for label uses for these various diseases/conditions that can benefit from LDN. Further discentive comes from the likelihood that LDN would undercut more profitable drugs big pharmaceutical companies already have on the market. There is quite the benefit of repurposing old drugs like Naltrexone for new uses as the drug has been around so long that it has an established safety profile that newer compounds don't have, and they are also much cheaper because they are off patent. Unfortunately most physicians at least in Canada learn about new treatments through pharmaceutical reps meaning they will likely miss out on potential treatments of repurposed older drugs for their patients.

I think you should check out https://www.ldnscience.org/resources/interviews

It has interesting interviews with experts on LDN.

Before I forget, please describe more in detail your difficulties you are having with sleep before I will be able to suggest any specific resources or advice.

I mean to put the potential side effect of vivid dreams into perspective, even melatonin has this as a typical side effect, and at least in my experience hasn't been an issue at all. I guess it could be an issue if you have nightmares from like PTSD or nightmares in general. If that is the case maybe the drug Prazosin can help.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538493/

Oh I should add that LDN has an immunomodulating effect particularly on the T and B cells regulating their proliferation. This is particularly relevant to me as my problem is potentially with mast cells, which I found according to these pub med articles can be triggered to degranulate when they come into contact with T cells causing an immune response. Hopefully that is a potential mechanism by which the mast cell like symptoms can be controlled without having to resort to using mast cell stabilizeing drugs which can be hard on the liver and surpress your immunity.

https://www.ncbi.nlm.nih.gov/pubmed/20810987

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4528181/

If you suffering from an atypical presentation of a diagnosis you have been given, it could be that you have another condition altogether, something rare that may have eluded detection of your current and past doctors. Consider that autism itself is associated with an increased prevalence of a large number of rare conditions above that of the general population. In my case a rare genetic bone and neurlogical disease called MHE that I had been diagnosed with at 3 months of age has a genetic link/association with autism Here are two resources which were designed experts and intended to be used by physicians which can help diagnose rare diseases or at least give you new avenues to explore by entering your symptoms into the search engines. You should consider giving them a look. Find Zebra is particularly easier to use than the 2nd database.

http://www.findzebra.com/

http://compbio.charite.de/phenomizer/

Noca - I know that migraines aren't your issue, but you have clearly researched LDN well. I'm having some problems with my botox. It wore off today, after only two months instead of three! Botox is a treatment that uses a targeted infection of botulism to paralyse one's muscles and prevent the migraine cycle from tightening the muscles on the head, which reduces pain considerably.

I've taken three doses of the LDN. It seems unlikely that this small amount of treatment with LDN would cause my immune system to rally and remove the botox, but of course, I'm suspicious. LDN is supposed to work in part by modulating the immune system. Botox works by targeting a bacterial infection to paralyze muscles. There are very rare cases where a patient's immune system fights off the botox and never works at all.

Well I was aware of the use of botox to treat chronic migraines I wasn't aware that it used a localized infection. From my understanding the boost to your endorphins happens from your first dose, and in 3 days I guess it is a plausible explanation as to why your botox wore off early. While I haven't come across any articles or anecdotes involving botox and LDN, I did come across someone for example who had frequent cold sore outbreaks which ceased with the use of LDN, but doesn't describe how long after starting LDN until these outbreaks stopped.

"I used to get cold sores every other month or so, whenever I was under a lot of stress. After reading about low-dose naltrexone, I got a prescription for its overall immune benefits. Much to my surprise, my cold sores completely went away. I haven’t had a single outbreak in two years thanks to this remedy for cold sores! — D.G., Newport Beach, CA"

If you want you could just send Drs. Ian Zagon an email to ask him directly. I have come across other LDN patients who had their own questions answered personally by Drs. Ian Zagon when they emailed him. He is one of the doctors who discovered LDN and has been researching it for decades. His email is listed on his LinkedIn account.

https://profiles.psu.edu/profiles/display/113208

Thanks! If he's into researching LDN, this might be fascinating to him. It's distinct and observable. (AKA, I am not making this s**t up.) You can see it on my face. My eyebrows go up now and we have a record of them being frozen less than two months ago.

Any updates so far spoons? How is LDN working out for yoh?

The results are still strongly mixed. They say that the side effects are negligible. I have to disagree. My whole system has been influenced by this stuff. The insomnia and vivid dreaming was strong at first. I also had mild euphoria at first, and heart palpitations in the middle of the night. I've had significant irritability this last week. I've had some symptoms that may be a herxamer reaction like a very low grade fever and a couple of days of snot. (I haven't decided if I agree that herxing is even a thing.) My migraine condition has had some notably better days. But that also seems dependent on a recent preventative medication that I recently increased. (Atacand, in case you are curious.)

The worst of the side effects seem to be waning now. And my overall energy level is distinctly better. I've had more days were I'm able to act like a human for most of the day, instead of needing to nap like I have been for the last several years. The affect from the LDN wears off in the evening, and I can feel my old energy levels return. So it's doing something. I'm only on 1.5 mg now. In general, one raises the dose until you are at 3 mg or 4.5 mg, so there's a way to go.

Oh - one more thing. I did BETTER with the insomnia on MORE LDN. I can't explain it. Might be a coincidence, but I started sleeping better when I increased the dose from .5 to 1 mg. On .5 the insomnia affect was awful.

How's the Pot experiment going, Noca?

Yeah you can have initial worsening of symptoms for a couple weeks when you start LDN. Sleep has been a problem for me for the last 12 years and I often take like a half dozen sedating drugs to get to sleep. I am not sure what to expect in terms of sleeping difficulty on LDN. I see the LDN friendly doctor on the 28th of this month to hopefully start the treatment.

My energy levels are at rock bottom so I hope that LDN improves that to some degree as well.

So far cannabis has eliminated 60 to 80% of my nausea, works excellent for my arthritis and chronic pain, and has notably helped my IBS-D. I have been constipated 5 times so far since I started Cannabis on Feb 14th so that is something I can work with. I am down to just 1mg bid of immodium down from 2mg bid (mind you this is on my completely liquid diet of peanut butter, lactose free milk, whey, canola oil and POM juice). I tried it without any immodium and that didn't go over too well. I try to vape immediately prior to a meal to aid wtih digestion and calm my nausea.

Vaping can shut down a stomach ache/spasm within like 30 seconds if I used fresh unvaped of my mixed 7% THC/13% CBD strain. I find it slows food through my digestive tract, leaving me feeling fuller longer. I feel bloated still but I think I am still swallowing too much air when I drink or vape. My weight is going up, up to 135.5 lbs which is nice, as it is the heaviest I've weighed since I was on Zyprexa (I struggle chronically with low weight likely because my digestive system is so f****d).

While nearly every dosing combination of either strain I use helps nausea/chronic pain, I have found it difficult to get consistent results for anxiety relief, sleep and some of my IBS symptoms because there are so many variables to control as well as uncontrollable ones. The temperature used, the strain used, the amount of cannibas, whether it is fresh or been vaped before already, the level of which you grind the cannibas into smaller pieces, how long you inhale, how long you hold it in before exhaling, as well as uncontrollable variables like the humidity, degradation and variation in cannabinoid levels even in the same batch.

I would ideally like to use half cannabis oils for more long acting consistent relief with vaping for breakthru relief of various symptoms. As the prices stand cannabis oils are just too far expensive atm. I am kind of restricted to just using two strains atm due to my <10% THC limit imposed by my doctor and the limited selection in the liscensed producer I have my prescription with(the cheapest compassionate price I could find for dried cannabis). Wish I had more options but I guess limited selection keeps the price down. I wish recreational cannabis laws would hurry up so I could get access to more variety to try beyond my prescription.

So far the only side effects can be a little foggy headedness (dose dependent) and slight throat irritation/coughing (easily avoided by drinking some milk), and it can exacerbate my muscle weakness but it isnt that bad to warrant stopping.

Listening to you describe your symptoms, I think you are really going to do well on LDN. One thing I've learned from people online about IBS and LDN - be careful with the filler they put in the LDN pill. Apparently, the plant fiber in the pills can set some people with severe IBS off cycle. They seem to prefer a sucrose filler to the plant fiber that does fine for most of us. (You can't use a calcium filler with Naltrexone as that will alter it's effect.

I'm curious that you use so many milk products. That tends to be constipating in most people. Can I assume that you ended up using that after many trials of other foods that didn't help?

I'm glad the cannabis trial is going well with you.

I also failed to mention that my cannibas has not helped my allergic symptoms like daily full body itching and rashes that need to be kept in check with several daily antihistmines. It has however significantly helped the swollen throat and nose symptoms(all from an undiagnosed mast cell disease is my best thought). I hope LDN can really offer a unique treatment for my allergic symptoms that doesn't involve conventional immune system surpressing treatments, trading one problem for another.

Thank you for your mention of the sucrose filler, I'll be sure to make sure that the pharmacist factors that in. I included the note to avoid calcium fillers in my original post. I will try to get sublingual drops if the cost isn't prohibitive as I may want to avoid my intestines as I am afraid of it causing problems with the opioid receptors in the intestines particularly during the short window that the drug is in the body before it r brain and before the negative feedback trick gets a chance to be triggered..

I know that people take caltrate calcium supplemenrs because calcium acts as a constipating mineral but I already consume tons so I figured since there is no way to accurately test blood calcium levels, I decided to err on the side if caution and avoid supplementing and risking hypercalcemia.

You are correct that I started with a very broad range of foods in my diet and eliminated them one by one until I found a list of safe foods to stabilize my symptoms. Then one day out of nowhere, those safe foods were no longer safe and I suffered through severe IBS-D until through process of elimination and deductive reasoning I eliminated the problem foods and once again felt my symptoms were stable. This would repeat over and over until where I am at right now. Like even Ensures were safe for nine months then one day, some ingredient in them caused me to start having severe gas and gut aches, which was onlu alievuated by cutting it out of my diet.

I have taken a ridiculous number of steps and various treatments to try to overcome my health problems and my health continued to deterioate for years. My body is really f****d up so I am really hoping these Hail Mary treatments like Cannabis or LDN can help.

I guess another wild card into my plan is that there is quite a significant interaction between the endocannabinoid and the endoopioid systems so it willl really be hard to predict what that means in terms of efficacy for either treatment.

I don't think I mentioned that I'm an herbalist and a chiropractor. Cannabis can't be expected to treat half of the things that you are concerned about.

The problem with really restricting that much is that you get weaker over time. I'm sure you've seen this for yourself already.

I had a lesson recently with my situation. It all seemed to be working, and my blood pressure was dropping, so I decided to stop a blood pressure medicine that is also a migraine preventative. It's called atacand. I discovered that everything is much worse on without it, even though the Atacand wasn't doing much good at all before the LDN. I went back on the Atacand and things are going better.

The lesson I'm taking from this is that sometimes, when you are really in a hole health-wise, you need to put treatments together all at once. Because they each have a little piece and you won't start seeing any benefits as long as all of those pieces aren't together. So, it's something to consider to try them both at the same time - the LDN and the medical pot. What does the anti-spasmotic and hunger inducing properties of pot matter if you are so allergic to the world that your whole body is reacting all the time? That's where the LDN comes into play. It has the potential to stop your immune system from overreacting to everything. Then the anti-spasmotic part of the pot will actually have a chance to do something.