by Jennifer Crystal
Asking important questions when it comes to Lyme treatment. Do the benefits outweigh the risks?
At the 2019 International Lyme and Associated Diseases Society (ILADS) conference in Boston, there was a lot of buzz about two up-and-coming Lyme treatments: Disulfiram and Dapsone. Both medications have shown powerful efficacy against Lyme, and Disulfiram may also treat babesia. Learning of the success stories of late-stage Lyme patients who have taken these medications—subsequently enjoying remissions of six months or more—makes many people want to run out and try them. I am among them.
However, like most medications, these drugs also come with risks. Both can cause strong Herxheimer reactions, especially if taken at too high a dose too quickly. Disulfiram, more commonly known as Antabuse, a drug used to treat alcoholism, causes a severe reaction if the patient comes in contact with alcohol. And not just from having taken a sip of a drink; the slightest contact with alcohol-based lotions, hand sanitizers, mouthwashes, shampoos, or other products can make the patient vomit and feel extremely hungover. More rarely, the drug may cause psychosis.
If I were bedridden with tick-borne illnesses, as I once was, I would be eager to try one of these medications. At that time I was so sick I would have tried anything. My head throbbed with migraines; I was plagued with insomnia, and when I did sleep, I had hallucinogenic nightmares. I felt tied to my bed as if by the world’s worst case of flu. This went on for years. Eventually, antibiotic and antimalarial treatments, combined with nutritional supplements and adjunct therapies like neurofeedback and integrative manual therapy, helped me into remission. After one serious relapse, I have stayed in remission for over a decade, seeing steady improvements.
At 80% of restored health, I am living a good life. I can work part-time, write, socialize, and exercise. However, I also still have to stick to a strict sleep schedule; I still have to take low-dose antibiotics and other medications, and I still have to take a nap every afternoon. As I listened to doctors talk about Disulfiram and Dapsone at the ILADS conference, I wondered, “Could one of those medicines help me get even better? Could it eliminate my afternoon nap, or reduce my reliance on antibiotics?”
I asked one of the panelists, a Lyme Literate Medical Doctor (LLMD), this very question. “Let’s say a patient was at 80% restored health after years of battling tick-borne disease,” I said, explaining all the things this hypothetical patient could and could not do. “Is that a case in which you would prescribe Disulfiram or Dapsone, or are those medications better for someone in the acute stages of the illness?”
“That’s up to the patient,” the doctor replied. “Are they satisfied with their 80% lifestyle? Are they willing to feel terrible when they’re on the medication in order to feel better afterward? It’s really a question of risk-benefit analysis.”
This was a term I’d heard in my early days of Lyme treatment, and one I wrestled with many times as I tried new protocols. At each juncture, I had to consider, do the risks of taking this medication outweigh the benefits or vice-versa? For example, when I started taking sleep medication, I worried that I would become addicted. My doctor reasoned, “But you aren’t sleeping. You can’t get well without sleep. So the benefit of the medication outweighs the risk.”
I also did a cost-benefit analysis years ago when I was trying to decide if I should continue with oral antibiotics or try intravenous antibiotics through a Peripherally Inserted Central Catheter (PICC). My doctor said that intravenous antibiotics would get at the infection faster, and would take the pressure off my gut, since oral antibiotics come with their own adverse side effects, intestinal yeast overgrowth among them. I was managing that risk with a specialized diet and probiotics, but intravenous antibiotics would help.
However, intravenous antibiotics also came with risks. Herxheimer reactions could be more severe. The PICC line could clot. I had to be very careful not to get it wet, or water could go in the line, to my heart. Moreover, the specific intravenous antibiotic my doctor recommended could, in rare cases, cause gallstones.
At that point in my journey, I was so sick that I wanted to try the strongest, fastest course of action possible. To me, the possible benefits of intravenous antibiotics outweighed the risks, so I made the choice to get a PICC line.
My Herxheimer reactions were indeed severe. My line did clot once, and a nurse had to make an emergency visit to my home to fix it. As if that weren’t enough downside, I also developed gallstones and had to have my gallbladder removed (Note: Not all intravenous antibiotics have this side effect, and there are now medications to help counter it). Despite these complications, the PICC line helped move me towards remission within a year, so I feel the treatment was worth it.
Now that I’m doing well, my view of the risks and benefits of new medications is different. If I were still as sick as I once was, I absolutely would try Disulfiram or Dapsone. But in my current life, I can’t take time off to battle severe Herxheimer reactions, nor do I want to. I don’t want to run the risk of losing the gains I’ve earned. I’d love to give up my afternoon nap, but I’m not currently willing to feel worse in order to possibly make that happen, especially with no guarantee. I certainly don’t want to get to a point where I say, “Remember when I was doing so well that all I had to do was take an afternoon nap?”
For now, I’m content making smaller tweaks to my treatment protocol such as adding supplements and lowering antibiotic doses that might improve my energy. The risks of these moves are relatively low. At some point, I may want to take a larger leap. After more research is done on Disulfiram and Dapsone, I may decide their benefits do indeed outweigh their risks and try one of them.
Another patient in my shoes might feel differently. They might be willing to possibly go back to 50% if that meant they could get 100% wellness eventually. I respect that. The bottom line is that you have to do what’s right for your body, and you and your LLMD need to weigh the risks and benefits of choices for your specific case. At the end of the day, you’re the one living with Lyme disease and possibly other tick-borne infections, so you get to decide what risks you do and don’t want to take.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.