“In my view low dose naltrexone is well on its way to becoming a standard treatment” Dr. De Meirleir
From RNase L to the gut to hydrogen sulfide to LDN, Dr. De Meirleir has been on the cutting edge of treatment and research. De Meirleir begins this latest video talk by referring to the exciting but small LDN/Fibromyalgia study at Stanford. (Stanford’s 2009 study found that LDN significantly reduced pain, fatigue, and stress, and helped to improve sleep and reduce gut issues and headaches. Their larger 2013 placebo-controlled, double-blinded, crossover study found LDN improved mood but did not help with sleep or fatigue. Thirty-two percent of participants, however, reported significantly reduced pain as well as less fatigue and/or better sleep.)
Given its non-proprietary nature–LDN is produced in compounding pharmacies, not by Big Pharma–it was great to see researchers at one of the best medical universities in the world looking closely at LDN.
De Meirleir explained that LDN is an opiate receptor blocker and is used in very small doses (0.5-5.5 mg/day) relative to its normal dosing (5 grams, which is 5000 mg). It turns out that the partial blockage of the opioid receptors tricks the brain into producing more of its own opiates, thus reducing pain and improving sleep (but not generally reducing fatigue).
Those opiate receptors don’t just affect pain, however; the opiate receptors in the body and skin also help to control blood flow–a major issue in ME/CFS. Dr. De Meirleir didn’t say exactly what LDN did, but he implied it might be able to help smooth out the blood flow problems, perhaps by reducing the dilation of the large blood vessels and/or increasing the dilation of the small ones.
More on Chronic Fatigue Syndrome, Fibromyalgia, and Low Dose Naltrexone
“I want to make a plug for Low Dose Naltrexone” Dr. Nancy Klimas – Simmaron Roundtable Meeting
At Simmaron’s Roundtable no less than Dr. Klimas, an impeccable researcher and physician who does not follow trends, said “I want to make a plug for low dose naltrexone.”
It turns out that LDN, not Lyrica or opioids or Cymbalta, is the first drug Dr. Klimas uses for pain in FM/ME/CFS. That’s a pretty strong endorsement from a well-respected physician.
The fact that LDN appears to be able to increase endorphins, a feel-good chemical that surely must be almost bottomed out in ME/CFS and FM, only adds to LDN’s luster. In fact a small 2002 Italian study found greatly reduced beta-endorphin levels in the blood of both chronic fatigue syndrome and fibromyalgia patients, but not in patients with depression. An earlier Italian study found greatly reduced beta-endorphin levels in ME/CFS. The authors noted the immune regulating functions of beta-endorphins and suggested a biomarker may have been found, but no follow-up studies have been done.
One person with ME/CFS, Maija Haavisto described her experience with LDN:
“ My fatigue and muscle weakness are a lot better, I don’t “crash” nearly as easily as I used to, and the crashes are significantly milder (I used to get bedbound from very mild effort, like stirring a soup!) My cognitive problems have improved though not as much as my fatigue. My chronic fever and chronic urticaria, both among my most bothersome symptoms, are 90-95% gone. My asthma is also a lot better. Most importantly, LDN seems to have stabilized my condition. I believe I would be in wheelchair, probably even a nursing home, now if it wasn’t for LDN. While I’m far from a cure, my quality of life is very much improved.”
Not bad for a $15-$40 a month drug….The LDN homepage asserts LDN can be useful in any ‘endorphin deficient’ disorder and includes autoimmune disorders in that category.
The fact that LDN is cheap and appears to have few side effects makes it hard to pass up. All you need is a doctor’s prescription.
More on Low Dose Naltrexone
Two recent case studies suggested LDN may be effective in chronic regional pain syndrome (CRPS), an often devastating disease which eventually becomes impervious to anticonvulsants, analgesics and nerve blocks. If you think a cheap drug you can get at a compounding pharmacy can’t be powerful, check out these case reports.
Following an infection in his big toe, a veteran developed swelling, allodynia, and color and temperature changes in his right leg. The next year saw CRPS beginning in his arms, and blisters and skin ulcers appearing in his legs. A heart operation then triggered CRPS in his chest including spasms. Despite being on anticonvulsants, antidepressants, physical therapy, psychotherapy, and opioid and non-opioid pain drugs, he was unable to walk without pain. Ketamine infusions worked for a while but then began to decline in effectiveness. He also had diabetes and hypertension.
Finally, after four agonizing years he was put on 4.5 mgs of LDN. Two months later he was not well but he required less frequent ketamine infusions, his subjective pain level had dropped from an average of 8-10 to 5-6, his spasms had stopped,and he was able to walk without a cane for the first time since 2006.
A second case report involved a person with Ehler-Danlos Syndrome (EDS) who had developed CRPS. Despite taking levetiracetam, midodrine, baclofen, trazodone, diphenhydramine, lansoprazole, budesonide, levalbuterol, L-Carnitine, coenzyme Q10, vitamin D, vitamin C, magnesium, and vitamin B complex she rated her average pain at 8 on a scale of 10.
Four weeks of ketamine troches and LDN (4.5 mg/day) reduced her pain to 3-5 out of10. (The ketamine troches were discontinued by week 8.) Despite having to undergo several operations (which often causes CRPS to spread) not only did her CRPS not spread but it resolved completely. Eighteen months later she’s still taking LDN with no side effects.
The authors believe LDN is dampening glial activation (neuroinflammation) in the central nervous system. They suggested that ketamine, an NMDA receptor blocker, and LDN, an activated glial suppressor, might work synergistically to reduce centralized neuroinflammation.
LDN was also recently found to reverse allodynia in rats and is able to cross the blood-brain barrier and suppress the activity of the immune cells (glial/microoglial) that promote inflammation in the brain.
Getting Low Dose Naltrexone
The preliminary evidence continues to show that low-dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain. The medication is widely available, inexpensive, safe, and well-tolerated. (Younger et. al.)
The LDN website states that LDN is sold by Mallinckrodt as Depade, and by Barr Laboratories as naltrexone, and that a one month supply ranges from $15 to $40.
They also provide a list of ‘reliable’ LDN compounding pharmacies that can ship your LDN to you. Many compounding pharmacies are not, they assert, reliable. They recommend that LDN not be used in its ‘slow-release’ form and that certain fillers not be used.
According to Dr. De Meirleir the doses in ME/CFS may be as low as 0.5 mgs and up to 5 mgs or more. The 4-6 hours or so the drug remains in your system is sufficient to boost endogenous opioid levels for 18-24 hours.
If you’re on narcotic pain drugs, do not take LDN until the drugs are out of your system. If you have Hashimoto’s disease consult with your doctor and start off low.
The Low Dose Naltrexone Survey
Here are the responses thus far to the survey. 33 people have tried it. Most found that they got their best response using 5 mgs or greater.
- Pain – 30% thought it was very effective at relieving their pain, 39% thought it was somewhat effective and 30% got no response.
- Fatigue – 12% found it very effective at reducing their fatigue, 22% found it somewhat effective and 66% got no response.
- Sleep – 23% found it was very effective at improving their sleep; 35% thought it somewhat effective and 42% found no change.
The high-dose (200/mg or more of oral thiamine daily) survey is closing soon – and will be open until Friday, May 7. If you are currently taking high-dose thiamine or have done so in the past, and feel comfortable sharing your experience, please complete the survey here. (Please do not start high-dose thiamine just to participate in the survey.) Find out more about high-dose thiamine in ME/CFS/FM here.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.