by Maija Haavisto
I got sick with CFS/ME in 2000 and it was progressive from the start, which isn't the usual course, but neither is it terribly uncommon. From late 2006 it started progressing more rapidly and I almost completely lost my ability to walk in a very short amount of time. It was frightening, as none of my symptoms had ever got better, only worse.
In early 2007 I was lucky to meet my doctor, thanks to a tip from a member of my Finnish CFS/ME forum. No doctors in Finland really know CFS/ME, but he seemed to know something, and he was very open-minded.
On my second visit I asked if he could prescribe me low dose naltrexone. I explained that in small doses this opioid antagonist (normally used in the treatment of addiction) increases the secretion of endogenous opioids, like endorphins. Endorphins not only relieve pain, they also regulate the immune system. Increased beta endorphin boost function of NK cells (natural killer cells), which is impaired in CFS/ME. LDN also decreases inflammation and since the treatment was invented back in the 1980s it has been used in the treatment of e.g. autoimmune diseases, HIV/AIDS, fibromyalgia and even cancer.
My doctor was immediately intrigued and agreed to write me a prescription, which I filled at a compounding pharmacy. One day after starting LDN I already noticed that things that would normally "crash" me did not. Since starting LDN I hardly ever crash so badly that I require bedrest.
My muscle weakness and fatigue are improved and on a good day I can walk several kilometers. The chronic fever and chronic urticaria which were very bothersome are much milder now. My lymph nodes are no longer swollen. My illness progression has stopped. I had some weird symptoms the first night - tremor and hunger, which are quite unusual side effects - but all side effects subsided in a few days, as usually happens with LDN.
LDN and Other People
Less than a week after I started LDN my doctor had already prescribed it for another patient of his. It is now the primary medication he uses for CFS/ME and fibromyalgia and when he wrote the foreword to the Finnish edition of my book Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia it was mostly in praise of LDN.
LDN is not a miracle drug. It does not cure CFS/ME and mostly produces moderate symptom relief. I got more symptom relief than most (though some people get a lot more than I did), but still any relief is good, especially since it appears to be due to amelioration of the actual disease process. Most immunomodulators used in the treatment of CFS/ME cost hundreds or thousands a month, but LDN is very affordable. It's only about 15 euros a month in Finland, most people pay about $30 a month.
LDN seems to help about 2/3 of people with CFS/ME, which is a lot more than most treatments. Even people sensitive to medications usually tolerate it. It can relieve symptoms that are difficult to treat, such as neurological and immunological symptoms. Many comorbid conditions such as autoimmune diseases, fibromyalgia, restless legs, asthma and others often get better. Not to forget the effect on illness progression.
Experiences of Finnish Patients
Myself included I am aware of 14 Finnish CFS/ME patients who have tried LDN, most of whom have filled my survey and agreed to have the results released anonymously.. I believe 11 of them are still taking it. I would rate the experience of six as very positive, three as positive, three as negative and two as too early to judge at the moment. The "cohort" is mostly female with a few males, about 20-60 years old (LDN has also been used in children, e.g. to treat autism, Crohn's disease and fibromyalgia). None have been tested for XMRV, but several have chronic herpesviral infections.
For some reason almost all Finnish CFS/ME patients suffer from chronic fever. All but one who had chronic fever and tried LDN noticed improvement in this symptom. LDN has also helped several symptoms normally difficult to treat, such as other immune symptoms, sensitivity to light and noise, food intolerances and muscle weakness. Improvement in asthma and restless legs were also reported. Even though LDN usually helps urinary frequency in MS, for some reason it only helped one person in the cohort with this symptom. Two of the people taking LDN consider themselves 70% better now. One even reached this level 30 minutes after the first capsule!
One particularly impressive case is a woman who wrote she was previously able to walk 150 meters, now 3 kilometers (increase of 2,000%). She used to sleep 17 hours a day, now 10 hours. Previously unable to do crafts any more, now she's knitting all the time. She was taking painkillers daily, now only about twice a month. For 14 years she had to wear sunglasses every spring and summer, even indoors, now she doesn't even know where they are. She no longer needs her ear protectors either.
Most of the people taking LDN are also taking other treatments. In my survey other most helpful treatments were recorded to be nimodipine, piracetam, inosine, hydrocortisone and diet modifications (gluten/allergen avoidance and/or low carb), all by two or three mentions. Two are also taking IVIG and have tried ozone therapy while on LDN, but so far these treatments have not produced major improvement.
LDN does not usually cause side effects - they are a bit more common in people with CFS/ME, but still rare and mostly mild. Initial sleep disturbance is listed as the most common complaint, but instead CFS/ME patients seem to get quite random side effects. Transient headache and nausea have been reported the most often.
Some people have described weird feelings of sickness feeling like alcohol hangover or even like motion sickness. One had dizziness, one had worsening of muscle and joint pain, one had GERD (also described by a friend of mine who does not have CFS/ME), one had excessively deep sleep (difficult to get up). Most, however, have got no side effects or they have subsided in a few days. A friend with CFS/ME, not a part of this "case series", said the first night on LDN was the worst sleep he had in years - and the second night was the best sleep he had in years!
LDN in Use
It would be great to figure out which factors affect LDN response. Based on these 14 people and about 10 other people I know I still have very little clues. Illness severity likely does. Moderately affected seem to get the best response while the more severely ill seem to improve, too. Illness duration does not seem to affect response at all. All who have chronic viral infections have benefited.
Immune symptoms seem to predict a good response while idiopathic hypersomnia (in addition to CFS/ME or as a possibly primary illness) may be associated with a poor response. Those with primarily cardiovascular symptoms (CFS/ME as a viral cardiomyopathy/heart failure) do not seem to benefit.
The "normal" dose of LDN has traditionally been 4.5 mg (less than 1/10 of what is used in the treatment of addiction), but this appears to be quite arbitrary. Many people take a lot less and some take more. Even those who are sensitive to medications can often tolerate LDN well, but some people with CFS/ME end up taking only 1-2 mg. It could be that some of these Finns who couldn't tolerate LDN were simply taking way too much.
LDN has traditionally been instructed to always be taken at night, but some people choose to take it in the morning - some because of sleep disturbances, some because they get most energy immediately afterwards - and this appears to work just fine.
My doctor seems to be the only one who has prescribed LDN to be taken several times a day, usually 2-3 x 1.5 mg, and this also works fine. A few people taking LDN for other illnesses only dose it every other day. Some immunomodulators used in the treatment of CFS/ME (e.g. inosine pranobex and Nexavir/Kutapressin) are taken in a dose that is constantly varied, but no one knows whether this would work well for LDN, too. I have taken LDN for almost four years and it seems to work just as well as initially.
It is impossible to describe the mode of action of LDN, its history and its use in other illnesses in detail here, but more information (including study references) can be found on my LDN website. While no formal studies of LDN in CFS/ME have been conducted, there have been two very successful clinical trials in fibromyalgia. The latest, very impressive one, is still awaiting publication, but that should happen soon. For doctors who understand how similar CFS/ME and fibromyalgia are in many ways this trial should make it easier to convince them to prescribe LDN.
About the Author
Maija Haavisto is a Finnish CFS/ME patient and medical writer now living in the Netherlands. She has been a speaker at two LDN conferences in the UK. She maintains the only Finnish CFS/ME website CFS-verkko and has authored the medical textbook 'Reviving the Broken Marionette:Treatments for CFS/ME and Fibromyalgia', also available in Finnish from Finn Lectura.