How a pioneering doctor uses disulfiram to treat persistent Lyme disease Some chronic Lyme patients--though not all--get substantially better on this drug.

AKenneth Liegner: Well, I can’t take credit for discovering it for its utility in Lyme. It was the work of Jayakumar Rajadas. I was the first clinician to apply it in patients. Jayakumar Rajadas and his coworkers at Stanford did some high throughput testing of thousands of compounds and just tested them to see which had activity against the Lyme spirochete. And it turned out that disulfiram was way up there at the top, or near the top, if not at the top, having activity way more than doxycycline/Rocephin. So, that was published in an article in a little bit of an obscure journal, and nobody really paid all that much attention to it. Then at the first Lyme Mind Conference that was held at Mount Sinai sponsored by The Steven & Alexandra Cohen Foundation, they really got some great people together. The keynote speaker for that conference was Kim Lewis, who’s from Northeastern (University).

Towards the end of his talk, he mentioned Rajadas’ work, and that disulfiram had this huge activity. One of my patients had been following Kim Lewis’s work and it (the keynote speech) was later posted on YouTube. This is a patient I’d worked with for quite a few years, very trustworthy. He was kept pretty well on a regimen of amoxicillin, minocycline, and malarone. But if he went off treatment, he would deteriorate. He saw this presentation, and he told me about it.

So, I viewed it, and I was already familiar with the paper. I reread it. I’d never used disulfiram because I just had no occasion to use it. It is a drug that has been used mainly for treating alcoholism, which is not my field. I knew that it existed, but I had never used it. I looked it up at the patient’s request. I never would’ve suggested it to the patient. The patient asked if I would let him try it. Now, it’s a drug that’s been used for decades and is generally safe. And although it does have some potential toxicities, I allowed him to try it. And it’s a long, long story. It’s outlined in the articles that were published. There was the first article about the first three patients published in MDPI antibiotics. Then we published another paper a little bit later reporting on our experience with another 60 or 70 patients.

The first 3 patients that we used it on, bing! bing! bing! It was a dramatic improvement. And these are tough cases. These are not easy cases. That influenced me to publish on it. And of course, with that, it has gotten a lot of attention. It is a drug that has to be used with care. And it’s not something I just throw at people willy-nilly. It’s got to be the right person in the right way. And if you’re going to use it, you have to be really familiar with the drug, and you have to follow the patients carefully. Even today, we’re still trying to figure out different ways in which it can be used.

AKenneth Liegner: I’m not using it that way. I’m not using it as a first line. First of all, it’s still relatively new. I would not say it’s, quote, ‘the standard of care,’ you know?

AKenneth Liegner: Yes. But I don’t ever tell them to expect it. Nor do I declare that they are, quote, ‘cured.’ Because I don’t know. All I know is that there’s a subset of those who are treated, but not everybody who seems to get substantially better or well, and where they don’t need to see me for years at a time. So, I think it’s very potent. But again, it has certain toxicities that can be quite serious, even fatal, or resulting in irreversible neurologic injury. So, you have to be judicious with who you use it with. People need to be fully informed. As a clinician, you are obliged to follow them carefully and be vigilant. Usually with some of these complications if you recognize it, you need to stop the drug. And usually, those adverse reactions will reverse. But even then, you can’t say that. You don’t always know that they’re going to reverse. So, it’s tricky. It’s potent, but it has to be used with care, judiciously.

AKenneth Liegner: The thing about it is, it’s as cheap as borscht! I mean, relatively speaking, compared to intravenous Rocephin, which is expensive and inconvenient. It also has risks. To me, it’s just another tool in the toolbox. And you can’t have too many tools. We need more tools in the toolbox.

AKenneth Liegner: I think there’s going to be some synergy there. But I think really in order to solve the problem, you need to acknowledge it for what it is. And that’s why I reiterate it’s important to acknowledge chronic Lyme, the infection. There can be other elements, like neuro autoimmune components for sure. Or maybe even post-infections in some people. But for many people it’s the infection. And if you don’t acknowledge that, then your research for treatment is going to be misaligned. You need to find a way to definitively deal with the infection. And of course, the hope and the goal would be to find something that’s absolutely curative, that eliminates the infection completely—unless you get reinfected—that should be the goal. That should be where the effort should be directed. Also, the other thing that’s important is to have a definitive direct detection test that’s qualitative, as well as semi-quantitative, that can help us to know the status of the infection and also the response to treatment in an objective way. That’s been lacking.