I have used naltrexone

February 26, 2010 at 11:49 am

Although I do not often post here, I do try to read several times per month just to keep up with what is taking place in the lives of so many people whom I feel I almost know, just because of your posts.
It took me 5 months, and 30 doctors to finally arrive at a proper diagnosis.
One of those doctors, who specializes in treatment of long term lyme disease, suggested I try Naltrexone at a 4.5 mg level. I had to get the prescription filled by a local pharmacy (not one of the chains), and took the Naltrexone for approximately 2-1/2 years, from March, 2007 to July, 2009.
I found the drug very easy to take, and experienced no side effects.
The lyme doctor felt, at the time, that the naltrexone would somehow strengthen my immune system. When I stopped the drug, I also stopped cold turkey, without side effects. The drug was provided via prescription, and my insurance plan covered it (it was not very expensive).
I was tentatively diagnosed with CIDP in April, 2007, based on physical examination and nerve conduction tests (which are quite sophisticated and specialized at Hopkins) and when things started to go downhill again in August, 2007, my Johns Hopkins doctor decided that it was time to treat me for the disease. He had no objections to the Naltrexone, but wasn’t sure it would help. The reason it was not treated right away was that my doctor wanted to determine whether I was suffering from a “monophasic” event, or something else. We did not do either a lumbar puncture nor sural nerve biopsy at the time because my condition had been stable for several months, not getting worse, but not getting better. Once we decided to treat, we did do a lumbar puncture, which confirmed very high protein levels, and I declined the sural nerve biopsy.
My treatment consisted of IVIG, starting once every three weeks. Hopkins has a lengthy and detailed protocol for the administration of IVIG (and the kind nurse printed it out for me at my first visit), and I had my treatments at the Hopkins Cancer outpatient department. The only side effects I suffered from the treatments were a headache the first couple of times, and I was usually somewhat tired when I went home. When I reported the headaches, my doctor changed the infusion preparation to add something else (20 ml of decadron), prior to the IVIG, which completely eliminated the headaches.
Although there was no improvement after the 5-day loading period, nor the succeeding treatment 3 weeks later, there was pronounced improvement after the next treatment, and within several more treatments, I had recovered substantially all of my motor strength. After expanding the intervals between treatments to four weeks, and then slowly reducing the amount of IVIG I received at each treatment, we finally stopped the IVIG treatments in July, 2009. I am at 100% for motor strength and about 95-95% with respect to sensory nerves. According to my doctor, the few sensory nerve residuals may or may not completely resolve in time.
I have also taken 2400 mg of Gabapentin, spread throughout the day, as part of my treatment regimen.
I have been back to full weight and cardiovascular workouts since approximately February, 2008, have spent a week skiing with no problems, and have traveled quite extensively since February, 2008, again all with no problems.
I’m not trying to brag on my situation, because every single one of us is very different in how the disease affects us, how we interact with our doctors (my doctor at Hopkins is truly wonderful and one of the leading researchers in this field), how we receive treatment (I always felt things would be much better having the treatments at Hopkins rather than at home, although I was offered a Hopkins Home Service), and how we respond to treatment.
The point I am trying to make is that although there is no proof that the Naltrexone played a role in my recovery, there is also nothing to suggest that it did any harm and may have fact contributed to a good outcome. Based upon my experience, anything that may contribute to a favorable outcome should be considered.