Two days ago, on October 19, I took 62.5mg of disulfiram. This is the third time I’m taking it, after stopping in the past due to side effects. Each of the past two times, I started with a different idea of where the disulfiram fits in my battle against Lyme Disease, and I have a new idea this time. Each time I stopped disulfiram, I could see the benefits, benefits that were big enough to want to try again. First a recap, then what I’m doing now.
Disulfiram Round 1
The first time I tried disulfiram, around this time last year, I was still dealing with my autumn Lyme flare. I was symptomatic with both Lyme and Babesia. My hope, after reading about other people’s experiences, was that disulfiram alone would get the symptoms of both infections under control. Last year, people were unsure whether disulfiram also worked against Bartonella because they had Bartonella herxes. So I started at a low dose and went up every few weeks until I got to 250mg per day. My big fear was that my Babesia infection would get resistant to it, so I felt urgent about increasing the dose to keep ahead of it.
I had side effects which were worrying, but since they included some psychiatric manifestations, I didn’t want to stop taking the drug. In some ways I felt great, you might even say “high”: chatty, good mood, low pain level, food cravings. But I was also somewhat paranoid, slept up to 20 hours a day, couldn’t look at a screen, couldn’t compose a written sentence, and was perpetually motion-sick. I also started having blurry vision, but that was reduced in intensity by coiling for Bartonella.
When some of that stuff calmed down, I went up to 375mg per day, and it got worse all over again. What finally made me stop taking disulfiram after 88 days was stabbing pain in my feet. The pain was so bad, I ripped off my shoes to see what was on my feet. Nothing. It took a few days off disulfiram for the pain to go away. It took a few weeks for the rest of the side effects to go away.
I had some inkling that some of the side effects, including the vision problems, were related to a reactivated Bartonella infection. I had seen this before when I was able to get my Lyme infection into a temporary remission with the coil machine. Coiling for Bartonella definitely helped. The rest of the side effects, I hypothesized, came from a Lyme die-off in my brain that I couldn’t clear out as fast as I was producing more toxins from the drug killing of Lyme bacteria that I’d never been able to get to before.
The biggest differences I noticed, ones that lasted quite a long time, were the lack of joint pain and the absence of a pain sensation that encompassed the whole right side of my body. After 12 years of disability and 18 years of infection, it was pretty amazing to wake up and go for a whole day, day after day, without joint pain. It was a happy respite from the strange sensation that the right side of my body experiences the world differently from the left side of my body. Eventually these symptoms came back, but that feeling of wellness carried with me for a long time. As my symptoms flared up again later, I desperately wanted access to that sense of wellness I’d gotten a taste of.
Disulfiram Round 2
Back in March, I was having trouble with the trio of tick-borne infections. It seemed like no amount of coiling could get me past the winter flare. In particular, the Babesia infection was sapping my energy and giving me multiple migraines a week. My intention was to take the disulfiram at a lower dose and supplement its actions with coiling for all three infections. In effect, I went from using disulfiram as the only treatment, to disulfiram as the main treatment with coiling as backup.
But a global pandemic changed my plans. I didn’t have access to my coil machine due to a sick person in the house. Instead of coiling, I supplemented the effects of disulfiram with a variety of herbs. (I also came down with a mild case of COVID-19.) This worked out for a while, but the Babesia infection eventually got to be too much for the herbs. I went from taking 62.5 mg every other day to taking it daily, but only for only a few days. I could feel the difference, not in getting rid of Babesia, but in constant motion-sickness (even when I was standing still). So I dropped back down to every other day. I started up the coil machine again. But the damage was done, in some sense. My body never caught up to the build up of toxins in my brain, and I didn’t feel right, in a global way.
I stopped disulfiram after 97 days because of blurry vision. I lost my up-close vision over the course of a week. Anything close to my face was out of focus, and at times, double-imaged. The extreme change was scary. It got me worried about optic neuritis. I stopped the drug as soon as I realized that was a possibility.
Once again, I experienced a period without joint pain and right side of body pain. Another funny thing happened, I found it easier to control my posture and stand upright. Way back in 2007, I collapsed and couldn’t walk for 2 1/2 years. It was a long, slow process to get back to walking, and then building stamina, and on and on. The change in bearing in my body was like a new level of effortless control, one I haven’t experienced in over a decades.
After some time, the joint pain returned as did the right side of body pain. The change in my posture continues. I have also had more stamina to concentrate than I’ve had since 2016, back when I thought I might be well enough to start a family with my husband. The stamina, though, is not global. I find myself tiring more easily with exercise, as the time increases since I last took disulfiram. Although I am able to concentrate, I still struggle using computers and watching tv, any thing with a screen.
Disulfiram Round 3
We’re starting this next round of disulfiram with a different theory of what role it will play in my fight against Lyme and Babesia. The basic idea is that I will use coiling as the primary means of controlling the infections, which will hopefully prevent Babesia from developing resistance to disulfiram (by using other means to kill it as it reproduces). The disulfiram will be an add-on to get to the cells that aren’t affected by the coil machine, namely cysts, persisters, and intracellular forms of the Lyme bacteria. Meanwhile, if it is able to get to the Babesia, especially in its dormant forms, that will be a bonus. For Bartonella, there is coiling, as well as oil of oregano, Japanese knotweed, and a combination of herbs sold as “Tribiotics” by Nutricology. I’m not taking any of these herbs yet, but they are in reserve just in case.
Before starting, I got checked out by an ophthalmologist. Apparently my eyes are fine, and as my vision has slowly improved from its nadir in May, I seem to have better than average close-up vision for my age. The eye doctor recommended reading glasses, which I only use when my eyes are tired. He also gave me some clues about when to worry about optic neuritis:
- Vision change in only one eye, or one eye much more than the other.
- Vision change that affects both near and far vision.
- Vision change that includes altered perception of color, such as seeing a red object as pink or orange from the affected eye.
The ophthalmologist’s exam made me worry less about possible optic neuritis as a side effect of disulfiram. It made me more convinced that the vision changes are related to a reactivated Bartonella infection.
My Lyme doctor is not convinced, completely, of my theory about Bartonella, but he strongly suggested that I focus a lot more on aiding the detox process. About a month and a half ago, I started coming off all the herbs I was on (the three listed above for Bartonella), except for the ones that help with detox. Instead, I started or increased: Tox-Ease by Beyond Balance (to 1 drop twice a day), NAC (to 1200 mg twice a day), and chanca piedra by Whole World Botanicals (to 2 pills twice a day). I added in daily consumption of kombucha for a while (though I stopped that a few days before starting disulfiram because it has trace amounts of alcohol), and dandelion root tea a few times a week. I also increased my consumption of green leafy veggies. Together those had a detoxification effect that I could see and smell. I’m continuing the detox for the duration of the time I’m on disulfiram.
One last piece of the puzzle is that I am fairly asymptomatic at this point due to lots of hours spent coiling for all three infections. The idea is to do this while I don’t have a high load of active infection. Most of my symptoms are Bartonella related (weekly migraines, constipation, tingling in my limbs, and reduced up-close vision). The extreme fatigue and night sweats of Babesia are currently absent, even without coiling for Babesia. The Lyme symptoms (joint pain, overall high pain level, right side of body ache, sleep issues, exertion-induced fatigue, etc.) are generally moderate as long as I coil my central nervous system for Lyme 3 or 4 times a week.
I started with 62.5 mg of disulfiram, with the intention of taking it once per week. If I stop having a noticeable herx, I may increase the dose, but continue to take it once a week for the foreseeable future. The idea is to allow my body to clean out the die-off of Lyme bacteria in my brain. At first, I balked at the idea of taking it so infrequently. Then I remembered that when I first started coiling, I could only coil for Lyme a small amount every 10 days in order to deal with the herxes. I decided that as long as I can coil at will in the present, then it is okay to take the disulfiram very sparingly. I’d like to be able to take it continually until I no longer need to coil to control Lyme (and hopefully Babesia).
I took the first dose of 62.5mg of disulfiram two nights ago. Within two hours, I had one expected reaction and one unexpected reaction. The expected reaction is a slight increase in respiratory congestion that I noticed the last two times I took it. As a result, I’ve taken diphenhydramine (Benedryl) that night and last night (and will continue to take it as needed), in addition to the daily dose of loratadine (Claritin) that I usually take. The unexpected reaction was a left side of the chest ache that goes up into my neck. This is a familiar problem that I’ve been to the cardiologist about many times. The only things I’m told to do are to take ibuprofen (Advil), consume plenty of fluids, and take it easy. The diagnosis is related to my tricuspid and mitral valve regurgitation. I’ve never figured out if it is specifically associated with either Lyme or Bartonella, or if it is one of those symptoms that comes with anything that disturbs my autonomic nervous system (which both infections do). So I’m taking it easy, as best I can, and seeing if this passes.
I’m coiling for Bartonella on my central nervous system twice a day. I’ve coiled once for Lyme on my central nervous system since I took the first dose of disulfiram, and will continue to do it 3 to 4 times a week.
Hopefully this time around, I’ll manage to post more frequent updates as to how the disulfiram plus coiling treatment plan works.
Categories: healing process