I had such good intentions to write about what was happening with disulfiram as I took it. But then COVID-19 happened, and a sick housemate, and I got what I think was a mild case, and when we were better, we got into making masks for friends and family and somehow it’s already July.
That said, I have much to report. I took disulfiram for 97 days. Some things got better while I was on it. Some stayed better after I stopped. Then the side effects got scary and I put it away for a few months.
I started Disulfiram on March 7, 2020, taking 62.5mg every other night. I stayed at this dose for most of the time I was on it. When I started out, I planned to use the coil machine as an adjunct treatment for Lyme and Babesia. I knew that the Bartonella would get worse as the disulfiram made the Lyme get quiet. I planned to use the coil machine as my only Bartonella treatment at first. This plan only lasted four days.
Then we had COVID-19 in the house. My housemate, who lives with us part-time, sleeps in the room where I keep the coil machine (away from electronics and cats who chew wires). As soon as we realized she was sick, I stopped going in the room. For the next five weeks, during her illness and the period afterwards where we were letting time disinfect the room, I took a variety of herbs and supplements to keep things in check. The herbs and supplements included: reishi, cordyceps, japanese knotweed, oil of oregano, and broccolinate.
March 19, I had my first symptoms that were outside my expected spectrum of chronic tick-borne illness symptoms. I had a cough with sharp chest pain for a few days. I had serious diarrhea, so bad that I developed a bleeding hemorrhoid. Food tasted like cardboard. The smell of clorox disinfectant wipes no longer bothered me. I sneezed for a few days and had chills for more than a week. Then I had my usual symptoms, only worse, like fatigue and air hunger. All these symptoms lasted until April 2. April 2 was also the day that we got access to a COVID-19 rtpcr test. Mine came back negative. (I could write a long article about false negatives with the rtpcr, but at best the false negative rate is 30%, and it goes up after 5 days of symptoms. I don’t know whether I definitively had COVID-19 but there is more to the story.)
Meanwhile, for the entire time I was on disufiram, I used benedryl and claritin to help reduce the herxes after reading about antihistamines helping other people tolerate disulfiram. I used chanca piedra for the herxes.
When the Babesia seemed to get worse, I tried tribiotics, which helped for two weeks. I knew it was babesia from the nightsweats, migraines, air hunger, and cardiac discomfort. When that wasn’t enough, I increased the disulfiram to 62.5mg every night. After five days of daily doses, I had constant motion sickness, as in walking gave me nausea. This was one of the problems I had on higher doses of disulfiram last autumn. I went back to taking it every other night. I was able to start using the coil machine again on April 16.
I’ve known this for a while, but nothing seems to work well for Babesia except coiling three times a day. This makes the coil machine both a blessing and a time-suck. If I coil daily for almost three hours, I have energy to do other things during the rest of the day. If I don’t use those three hours on the machine, I run out of energy faster and faster and end up on the couch all day for weeks at a time.
I saw some benefits from being on the disulfiram, things that improved beyond what I’ve been able to get in the past year through coiling alone. First, the dull ache on the entire right side of my body went away. (This didn’t last beyond when I took it.) My joint pain disappeared (which also didn’t last after I stopped). The excessive tension in my muscles relaxed, which allows me to walk more comfortably and improves my posture without effort. I had more energy and better concentration (these have diminished but are better than when I started taking disulfiram in March).
Some things were worse, particularly a series of migraines towards the end of the time I was on disulfiram. I was getting a new one every three days. Nothing that I usually do to reduce their severity helped. Eventually, I stopped all the supplements for a few days and added more coiling time, which seemed to break the cycle.
I also had relapses of the COVID-19 symptoms: diarrhea, cough with chest pain, sneezing, chills, and exhaustion. There was a relapse a month in May, June and July. I’m near the end of one now. I’ve tested negative for COVID-19 antibodies. I’m not sure what to believe about antibody tests after everything I’ve experienced with Lyme. The COVID-19 antibody test has a high false negative rate, and Lyme suppresses antibodies anyway. I’ve read about the “long-haulers” who get symptoms that never go away. Their list of symptoms reads like chronic Lyme Disease. I wonder if I have yet another chronic infection that will take forever to diagnose and for which there is no effective treatment.
Shortly after the migraines stopped, I developed heel pain. I think it is plantar fasciitis, but not from a new injury. I think it was some kind of neuropathy. My nervous system was on edge, with pains in places of healed injuries and tingling in my limbs. My overall pain level went up.
Then I had the side effect that made me stop taking disulfiram: optical neuritis. Over the course of less than a week, I lost my up close vision. It was a stark change, making it difficult to read or write (both of which I do while I coil). I knew it was time to stop while this side effect was still reversible. The last dose was on June 10.
My nervous system has continued to feel on edge. However, my optical nerve returned to 90% function after three weeks. I don’t know if I will get the rest of my vision back. My eyes still tire more easily. I have little tolerance for screens.
I’m not sure what I will do next. I still have disulfiram in the house. My dose was so low that it lasts and lasts and lasts. I’m thinking about waiting until September or October, then trying again. This time, coiling will be my primary method of fighting the infections. I might take 62.5 mg of disulfiram once a week, just to get to the parts of the infections that the coil machine doesn’t affect. Hopefully, I can do it without side effects this time.
Categories: healing process