I’m on day 17 of Disulfiram. I took 5 doses of 62.5mg every third day. Last night, on the same schedule, I increased to my first dose of 125mg. So far, I have not felt much of anything out of the ordinary. I have the same loose bowels of the past 7 weeks. I have the same aches and pains with none flaring and none diminishing. The only thing that has changed is that the bronchial inflammation that comes and goes has come back after a few month hiatus. To me, this doesn’t say much, except maybe the Lyme infection is at a relatively low level and my immune system is doing something. Or maybe it is September, which is when the bronchial inflammation flared every year since 2014. I don’t know.
However, something different happened on a psychological level. I got panicked that the “low and slow” approach with Disulfiram, one intended to prevent me from having a disabling herx with no ramp up to clue me to slow down on the doses, is actually giving the babesia infection the opportunity to develop resistance. The feeling started with a sense that I was ready for the next disulfiram dose after two days. (This was after the 4th dose). On the third day, I took it, and reported in to my doctor after the fifth dose. I expected him to say to increase to every other day. Instead, he said to increase the dose, but still every third day, and do it for two weeks. Again, the feeling came that the doses were too far apart, but I couldn’t initially discern why.
Then the thought about how antibiotic resistance happens came into my head. If I wanted to make a bacterial colony resistant to a drug, I would expose it to a non-lethal dose. The bacteria weakened by the first dose would not be able to reproduce as fast. Those that were unaffected would reproduce more quickly. Wait a bit and expose it again to a non-lethal dose. The same process repeats. Wait a bit more and increase the non-lethal dose. Again the process repeats. Since bacteria exchange plasmids (which often carry the DNA necessary to survive chemical attacks), in addition to replicating them when they reproduce, some of these plasmids would get passed along to other bacteria in the colony that weren’t initially resistant. As I hypothetically increase the dose to what would normally be a lethal dose, a much larger portion of the colony would have the requisite resistance plasmids, and the colony would survive.
Once I was done obsessing about whether I understood the science of resistance, I realized that I was worried about what is happening in my body. The clue, that I keep feeling like I need the dose sooner, is, I think, my body telling me that resistance is a possibility. I worry less about Lyme, which reproduces on a relatively slow cycle. What I worry about is babesia, which in my case, has become resistant to every single anti-parasitic drug, herb, and combination, that I’ve ever taken. Disulfiram might be my last hope.
Let me make one corollary. I do worry about Lyme and potentially Bartonella (which may or may not be affected by disulfiram). If the babesia microbes become resistant to disulfiram, they may exchange plasmids with bacteria in the other infections, making everything resistant. I would like to prevent this.
My current Lyme doctor has never prescribed disulfiram before. He’s in contact with one of the doctors on the East Coast who has been using this drug for almost a year. The East Coast doctor believes in the “low and slow” approach. Apparently, many people who started at high doses (250mg or 500mg daily) got hit with horrendous herxes and severe neurological and cognitive events, and had to stop taking the drug for a while. I am also a new patient in his practice so he doesn’t know what I can handle or how I react to drugs and herxes. I feel like I’m tougher than he can tell because I’ve been doing so much of my treatment on my own. I’m used to big herxes. I’m expecting one. I’d rather have one and deal with the consequences than lose my chance to kill the babesia and Lyme infections.
I’m not advocating that I ignore my doctor and bump up to 250mg daily next week. I think that at a minimum, I’d like to take the drug every other day this week, and if I am not hit with a big herx, move up the dose again. I’ll have to be in touch with my doctor tomorrow morning and see if we can find common ground.
Categories: healing process
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