Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, March 7, 2012

Naltrexone for ME/CFS

Yesterday, when I asked my doctor about immune modulators, he seemed eager to prescribe me low dose Naltrexone.  I had never heard of it, so I decided to research it before filling the prescription.  This post is a summary of my research.

A site called Low Dose Naltrexone seems to be the best for general information.  After that, my next stop was the Phoenix Rising forums.

The only "problem" with the great Phoenix Rising (which I love) is that there's often too MUCH information.  The current thread on Naltrexone is 74 pages and growing.  Who has time to read all that?  Well, I intend to anyway, and this post will be my ongoing summary of that thread.  My citations in parenthesis are references to the post #s within the thread (found in the upper right corner of each post). 

First, Naltrexone was originally developed to help drug and alcohol addicts with their dependency issues.  It also helps people who have chronic pain, as it seems to reduce inflammation, so it can be especially useful for those who have fibromyalgia in addition to ME.  For ME patients, it is usually given in low dose, of 4.5mg or less.  In it's low dose form, it is known as LDN, for low dose Naltrexone.  Some people take as little at 0.5 mg. (50)

Alleged Benefits of LDN

One poster made the following claim, which if true, is exactly what many of us need: "LDN is an immune modulator rather than a booster. It is supposed to increase NK cells. It is also supposed to shift the immune system from Th2 dominance to Th1 dominance--which would allow the body to better fight a retrovirus." (136).  It is not clear, however, what this poster's source it. I couldn't find it through a Google search.  A few others in the thread posted positive experiences with LDN, saying it improved their brain function and energy levels. (721).  People with Fibromyalgia or other inflammation conditions report the best success rate because LDN also works as an anti inflammatory.  

Side Effects

The main side effect reported was insomnia when first starting Naltrexone, which usually abates after a few weeks.  The most common advice is to start at a very lose dose - maybe 1 mg, and slowly work up to higher levels as sleep normalizes.  One poster took 3 months to work from 1.5 mg to 4.5. (72)  The same poster said that every time he titrated up to a new level, he experienced a Herx reaction as his immune system kicked in. (123)  Others also report start-up reactions. (34).  Still others report losing weight rapidly after starting LDN. (127).  Others said it helped them gain weight.

My Conclusion

Well, I still have about 1/2 of the thread left to read (I'll update this post as I go), but I skipped ahead to the last few pages.  Those who tried LDN and stopped due to side effects (mostly insomnia) or ineffectiveness, seem to outnumber those who benefited.  Then again, if I try it and it doesn't work at least I'll know. So I've decided to give it a try, at least long enough to see if it improves my NKC function in the next round of tests...  If LDN doesn't work, I may try Immunovir.

[3/22/12 Update: I've finished the reading the PR thread, and read a couple other LDN threads from other sites. In my estimate, LDN was reported as being effective for less than half of people who posted in these threads...but barely less than half.  If it even has a 40-45% success rate, it seems it would be worth a try for most PWMEs].

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