I discussed using Low Dose Naltrexone (LDN) for CFS in a blog entry here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/02/26/low-dose-naltrexone-for-cfs/
I have now completed the LDN treatment.
I have taken LDN for almost 6 months.
I have taken the ‘maximum’ dose of LDN, 4.5mg, for 4 months.
I did not experience any improvement in CFS symptoms while taking LDN.
The Effects LDN had on me
- During the first several weeks of taking LDN, I experienced vivid dreams. This is a common effect that LDN has on those who take it. The vivid dreams stage lasted for approximately 4 weeks before the vividness of my dreams gradually returned to normal.
- Upon waking some mornings, I noticed my arms and legs feeling slightly ‘wired.’ This ‘wired’ feeling was only mild and it felt like endorphins were causing this feeling.
- The main effect LDN had on me was an increase in nasal mucus discharge. I would typically have 2 weeks of going through a normal amount of tissues for me (1000 a day) followed by 2 weeks of using a higher number of tissues (around 2000 daily.) This oscillating pattern continued for the entire period that I took LDN. I normally cough up a lot of mucus which uses up a large number of tissues however LDN caused my nose to run.
My family described the amount of mucus discharge I was experiencing while taking LDN as “Like a severe cold that lasts for months.” I experienced a similar increase in mucus discharge nasally while taking artesunate. One possible explanation for the increase in mucus discharge nasally is that I had a quasi-Herxheimer reaction to the LDN.
Below is a photo of the scene next to my bed. This is the number of tissues I went through daily while on LDN. I normally go through half this number when not on LDN, just with my normal CFS.
A Possible Reason Why LDN Didn’t Improve my CFS Symptoms
A pilot study was conducted that examined the use of LDN on Fibromyalgia patients. This study’s abstract can be found here: http://www.ncbi.nlm.nih.gov/pubmed/19453963
The authors concluded that “Baseline erythrocyte sedimentation rate predicted over 80% of the variance in drug response (to LDN.) Individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to low-dose naltrexone.”
My most recent blood test on the 5th of July 2010 showed my ESR levels to be 4mm/h. The normal range is 1-15. I have never had a blood test showing high ESR levels hence this may be the reason, or a contributing factor, that explains why I didn’t respond to LDN.
LDN is considered an ‘experimental’ treatment for CFS. Dr Bihari reports that approximately 50% of CFS patients are helped my LDN. Unfortunately I was not one of these patients. I am pleased to have at least tried LDN because its mechanism of action has the potential to help CFS symptoms.