Has Low Dose Naltrexone (LDN) helped with EDS,  POTS, and MCAS?

LDN Specialist Pharmacist Michelle Moser
Pharmacist, Michelle Moser 

Has Low Dose Naltrexone (LDN) helped with EDS,  POTS, and MCAS?

I have recently been diagnosed with EDS, also have POTS, MCAS, i.e. chronic pain fatigue and multisystem inflammation. You may know of a very high co-occurrence of EDS with both Autism and ADHD. I have also been officially diagnosed with Autism. Could you please speak to the use of LDN to alleviate EDS, POTS, and MCAS symptoms? Are you aware of any studies in the use of LDN by autistic people to assist with very high level of nervous system dysregulation leading to stress and therefore inflammation? Do you have any experience working with Autistic patients? 

Yes, Dr. Norman Marcus at the last LDN Research Trust Conference in June of 2023 spoke quite a bit on Ehlers-Danlos Syndrome along with MCAS, the Mast Cell Activation Syndrome, along with POTS, which is the Postural Orthostatic Hypotensive issues, all of which encompass chronic pain fatigue and multisystem inflammation.  

A lot of times we start with once a day dose, we start very low, we start with very small doses, we increase those very slowly, perhaps every 14 days, and that is very helpful to alleviate a lot of the symptoms associated with all of the above. 

In a lot of those situations, we are using a liquid, so we have to be very careful about the base that the liquid is put in, as well as whether or not we're using any sweeteners or if we're using any flavoring products because, sometimes the artificial sweeteners can cause some symptoms that when people have rather inflamed autonomic systems. 
Same thing with flavors are sometimes artificially colored or artificially made, and that isn't necessarily going to enhance the alleviation of symptoms. It might actually make them worse. So that's not what we're trying to do here. We're trying to make sure that everybody is really well taken care of. 

Dr. Brian Udell has been treating patients with Autism, mainly in the pediatric spectrum for decades. And he has seen that that has worked very, very well. 
Because his patients are very young, as young as 10 months old, up through their early 20s, he will sometimes use transdermal Low Dose Naltrexone. 

Dr. McCandless also put together a study along with Dr. Ian Zygone and a few other people, specifically on Autism. Now transdermal Low Dose Naltrexone is literally Naltrexone put in a very specific base that will transverse all the layers of the skin and deliver Naltrexone to the capillary system. And then will disseminate the naltrexone throughout the entire body. 
That's very different than topical. Topical literally keeps the Naltrexone on the surface or just in a few layers down, but doesn't necessarily send the medication systemically, meaning throughout the entire body. 

So there's a very big difference between all of that. So it's about the type of delivery system that we're going to select for this individual. And it can be used quite well in reducing inflammation, reducing pain, in reducing fatigue, when we use very small doses, we go slow and we select the very specific dosage form for that individual. 

And yes, there is a lot of research out there. You can literally go to the ldnresearchtrust.org website, type in Autism, type in Ehlers-Danlos Syndrome, POTS, MCAS, there is actually a documentary and a book coming up on MCAS and ME that is in the works and should be out shortly.