Sufferers of a slew of debilitating diseases claim that low doses of naltrexone is healing them.
In October 2003, Linda Elsegood was diagnosed with secondary progressive multiple sclerosis, and told that doctors could do nothing more for her.
“That was devastating,” she says. “I was living, but it couldn’t be called living.”
Then she found out about a treatment using a low dose of a drug called naltrexone (LDN) from other MS sufferers. Elsegood found a prescribing doctor, and began taking it. “After three weeks, LDN tuned in that television set. I could see properly. I could begin to hear better. Cognitively, I could start to understand. It was amazing. Totally, totally amazing.”
Annabel Ince was diagnosed with Hailey-Hailey disease (HHD) 45 years ago. HHD is a genetically inherited disease that causes breaks and blisters in the skin. Traditionally treated by antibiotics and steroids, Ince found that, after a number of years, her treatment was causing more side effects than benefits.
“After nearly losing it with a life-destroying outbreak, going on for five years, and getting hopeless treatment from all the specialists that I went to, my son persuaded me to be more proactive,” she says. Ince studied research by an Italian rare disease team, who found that magnesium and vitamin D-3 helped some HHD sufferers, and then joined a Facebook HHD group where she found out about LDN. “After five months on LDN — and I did have a severe reaction at the start — I have been free of HHD for over a month and a half.”
After her own experience, Linda Elsegood set up the LDN Research Trust, hoping that if she spread the word, other people could reap the benefits. The Trust now holds international conferences for medical doctors, maintains a database of prescribing doctors, and hosts online forums for users. Yet despite being a low-cost, potentially high impact drug, why have so few doctors heard of it?
Naltrexone is in a class of drugs called antagonists, which block the activity of other drugs, some naturally occurring hormones, catecholamines, peptides, and neurotransmitters. It emerged as part of research to try and synthesize a non-morphine opiate in the 1940s, when two scientists from the pharmaceutical company Merck discovered a substance — which they called nalorphine — that seemed to reverse the effects of morphine. In 1963, a pure morphine-blocking drug called naloxone was patented, and in 1967, scientists discovered an oral analog now called naltrexone.
Naltrexone works by blocking opiate receptors. At low doses, naltrexone tricks the body into producing more endorphins, which can kill pain in the peripheral and central nervous systems, as well as elevate and regulate mood. Research conducted in 1985 showed that endorphins could also regulate and balance immune systems, and in recent years LDN has been found to reduce inflammation.
The first clinician to explore the immunomodulatory effects of naltrexone was Dr. Bernard Bihari in 1985 in New York. When he used LDN on advanced cases of AIDS, none of the patients taking it developed opportunistic infections. In a larger patient group, he demonstrated that LDN could prevent the destruction of the immune system and be used alongside antiretroviral drugs. From this point on, a few clinicians began prescribing LDN.
While naltrexone has been approved for opiate addiction by regulatory bodies in the U.S. and the U.K., it can only be used “off-label” for other conditions. This means that individual medical practitioners may decide to prescribe it in low doses, but it has not been officially approved for other uses. But because of the huge variety of diseases that have some immune or inflammatory-related component to them, LDN potentially has a wide-ranging impact. Elsegood created the LDN Research Trust in 2004 to help clinicians and users share information as the drug began to treat more conditions.
“Initially, we were just saying it’s for autoimmune disease,” says Elsegood, “but now we know it’s for chronic pain, infertility, autism, depression, post-traumatic stress and other mental health conditions, and cancers.” LDN is often used to help infectious diseases like Lyme and Epstein-Barr, both of which can trigger autoimmunity. Evolving medical research and clinical experience show that its effects on autoimmune diseases appears to only work at low doses, typically between .5mg and 4.5mg — and each patient needs to experiment to find the right dose.