As I wrote in my last couple of blog posts describing my experiences with low dose naltrexone (LDN) to address some of my multiple sclerosis (MS) symptoms, my initial positive response to LDN seemed to wane when I increased my dosage.
Initially, I had the following response to LDN (more details can be found in the individual blogs linked at the bottom of this article):
- Very noticeable reduction in heat intolerance. I was able to be outside in the middle of summer (94% humidity and 95 degrees Farenheit), whereas the year before, even walking from my door to the car would incapacitate me for several minutes.
- A reduction in fatigue. I went from waking up tired and needing a nap by 11 am to being able to function fine without a nap until about 4:00 or 5:00 in the afternoon (sometimes even later), at which point a tiny little mini-meditation would revive me.
- Periods where I felt completely free of MS - I was clearheaded, had no parasthesia or fatigue - I just felt like I think people without MS must feel. These periods would last from 1 to 4 hours.
I was thrilled with this response on 3 mg of LDN taken at night. Since it seems like much of the research and case studies have pointed to an optimum dose being 4.5 mg for people without spasticity issues, I was eager to up my dose the additional 1.5 mg. Right as I was starting on my new dosage, I had a stomach/respiratory bug, so felt pretty terrible for awhile. This made it difficult to tell what effect the new level of LDN was having.
I gave my new 4.5 mg regimen 3 months. In that time, my fatigue returned to pre-LDN levels. I felt dizzy and nauseous. I looked in a couple of places and asked a couple of people and found that it was pretty common for people to find that 4.5 mg of LDN proved to be "too much" for them, so many took their doses back down to 3 mg (or whatever it had been).
I refilled my prescription with 3 mg, but there was a mix-up with the mail and it didn't get here in time for me to start. I had several days with no LDN and the dizziness lifted. By the time my bottle of 3 mg LDN capsules arrived, I was feeling okay. The weather got colder and I started feeling the benefits of that, too - more energy and overall, less MS-y.
Bottom line, I have decided to give LDN a rest for now. I am still on Copaxone. I think I will go through the winter and early spring LDN-free (my MS symptoms are always more mild in this weather), then restart the LDN at 3 mg, or maybe even lower. I know that many of you will be thinking that this is unwise, as there are claims that LDN can slow progression and that effects may be cumulative. That may be and I am not giving up on LDN, just taking a break to do some more research.
One silver lining of being off of LDN during these months is that I can take my cough syrup which contains codeine (LDN can NOT be taken with any type of narcotic). Without that, I am pretty sure that I would have suffered many sleepless nights, as this seems to be the winter of respiratory infections for me and my family.
What about you? Have any of you had a negative (or positive) experience with increasing your LDN dosage?
Read the full articles/blogs: