Last autumn, I decided to try to disulfiram for Lyme disease. I read as much as I could from other people using it. I consulted with a Lyme-literate physician. I kept him in the loop as I increased slowly, maybe not so slowly. After a while, he told me just let him know if I needed help.
This is my story.
Before I get into the nitty-gritty, I’m going to tell you my conclusions. First is that even though I had to stop, I want to take it again. The best thing about it is that the joint pain I’ve had since 2001 is gone. I’m not sure I would’ve noticed because when pain is gone you don’t think about it, but I recently took a cyst-buster which usually sets my joints on fire (to help the coil machine get to the nerve symptoms). This time I felt nothing in my joints. The worst thing about taking disulfiram was the side effects. Besides the usual Herxheimer symptoms, I had a lot of psychiatric side effects. It’s possible that the side effects were directly from disulfiram, but I suspect that disulfiram killed Lyme bacteria in my brain, which caused inflammation and all the psych symptoms.
When I started taking disulfiram, everyone’s best guess was that we had to get to a fairly high dosage for it to work in eradicating Lyme or putting it into remission. When I stopped taking it, I read an article about someone who stayed on a very low-dose for more than six months and saw his symptoms slowly disappear. When I saw my doctor, he said that speaking to other doctors, an alternate approach was in fact to stay at a low-dose for six months to a year and stay on other treatments until they no longer seem necessary. This is what I would like to try next time I take it. Now for the details.
On August 30, I took my first dose of 62.5 mg before bed. My doctor wanted me to wait two days between each dose. I did that for two weeks. I felt like the drug was doing nothing. I should mention that I stopped all other treatments at that point. Maybe that was a mistake, but I was doing what other people said they were doing.
After the first dose, I had a funny reaction. It is reaction similar to what has happened when I’ve taken other drugs or after I get the flu shot. (Yes, I get a flu shot.) My throat feels inflamed, I produce my mucus in my sinuses, and my nose get stuffed up. It seems like general inflammation. It generally goes away within an hour.
The initial doses did nothing more than make me want to take more disulfiram. With my doctors consent, I changed to taking the doses every other day, And increased the size of the dose to 125 mg. That continued for 10 days. I still felt like I wanted to take it more frequently. I felt like it was maybe doing something, not very much, but something. After talking to my doctor, we changed it to a daily dose.
Early on, I had night sweats which are typical both of Babesia flares and herxes. This wasn’t a surprise as disulfiram is known to have an effect on Babesia. In addition, my nervous system felt very staticky. I had pain and tingling in various places that go both with Bartonella flares and Lyme flares. None of this was unexpected. I also had dysautonomia symptoms, such as nausea, sleep disturbances, increased fatigue, and digestive problems. My joints ache to more than usual.
Urgency and increased dosages
Four weeks after starting disulfiram, I increase the daily dose to 187.5 mg. On the second day, I had typical herx symptoms: diarrhea, headache, and a drop in energy. This lasted only a day. With this increase, I started to have more symptoms of Bartonella. The symptoms included pain on the soles of my feet when I stand up first thing in the morning, constipation, bloated abdomen, my limbs falling asleep, and inability to regulate my temperature. Looking back, I wish I had addressed Bartonella using some other treatment, specifically the coil machine, right away. The Bartonella symptoms get worse with the increased doses.
After only three days, I increase the dose to 250 mg daily. Once again I had typical herx symptoms on the second day. By the fourth day, they were completely gone. With each dose increase, I temporarily had night sweats for one or two nights. I had some residual Lyme symptoms such as joint pain, including in my ribs. I had some respiratory distress, air hunger, and chest compression. I also had a lot of muscle stiffness.
I felt like I really wanted to be at a high dose so that I could finally get rid of Lyme disease. That urgency spurred me to increase the dose way too soon. After only four doses, I increase the dose to 312.5 mg.
Something is happening
At this point, I felt like disulfiram was finally working for me. I had a herx, again, with loose bowels, headache, and a day in bed. After that, I started sleeping a lot. I started to have energy in the morning. I still needed a nap, but I wanted to be physically active. My appetite increased.
My symptoms were all over the place. I had active kidneys every time I lay down. Sometimes this was a problem at night, sometimes during the day. I had roving pain among my major joints. My bowels were too hard and then too soft. I started to have dizziness every day. I had a strange sensation on the top of my head which made me feel like I was falling backwards. I had tingling in all my limbs. I felt like I had chest congestion all the time. I had pain in my ear canals. My skin got very dry. My hands and feet were always cold. My overall pain level was high. I was susceptible to motion sickness every time I got in the car.
The neurological symptoms were difficult. My body started to feel numb, and the only sensation I could generate was pain. Sometimes even if I touched my neck, the sensation of touch caused pain. I started to feel like the world was fake. I had vivid disturbing dreams. I felt sleepy all the time. I could barely read, and I could barely scratch out a few words each day to record what was going on. My perception of the world was changed. It felt like there was something between my senses and the world around me. This was a rough time. My husband joked that I was having a bad trip.
I read in the Facebook group that people found it necessary to treat Bartonella using something other than disulfiram. At that point, I started coiling for Bartonella. I too found this useful. In fact, after coiling for Bartonella for several days I decided I was well enough to go up to a higher dose.
I hope this works
On October 19, I increase my dose to 375 mg daily. I had discovered the magic of Bonine to reduce the symptom of dizziness. The dizziness wasn’t gone, but I could stand up without fearing falling over. The dizziness wasn’t the only thing that bothered me at this dose. I couldn’t watch TV. It gave me motion sickness. Even walking gave me motion sickness.
I was sleeping deeper and longer and having more trouble getting up in the morning. I lost many days to somnolence, sleeping much of the day as well as the night. I tried taking a few over-the-counter antihistamines, after reading that some people found this to reduce the side effects of disulfiram. Pepcid AC mostly made digestion more difficult, and I couldn’t tell that it helped with the herx or side effects. Zyrtec on the other hand, seemed to help a little bit.
Digestion became a big issue. My stomach hurt pretty frequently. I reached the point where I was choking down a small meal once a day. Food tasted strange, a sweet-rotten flavor infusing everything. If I could’ve avoided eating altogether, I would have. I craved dried mulberries. (What was that about?)
I continued to have weird problems with my joints and tingling from time to time in my limbs. A tiny bite of chocolate cake (caffeine) at lunch time made me feel sleepy all day and kept me up all night.
My respiratory system was very inflamed. My nose, my sinuses, my throat, and my bronchial tubes were full of mucus. I coughed a lot, and I carried around a box of tissues. The antihistamines did nothing to reduce the symptoms.
My cognition was slow. I couldn’t read at all. I had to ask people to repeat things. I once again had the feeling that the world was fake and my senses were not to be trusted. While all this was going on, we went to Disneyland for my husband’s conference. The original plan was for me to visit the Star Wars area, as I’m a pretty big fan. But the stimulation of just walking through the hotel was too much for me. Also, it’s a terrible idea to go to Disneyland when you already feel like the world is fake. Just saying.
And then after a few weeks, that problem flipped. I became very outgoing, I couldn’t stop talking, I couldn’t stop making jokes, and I had a million new ideas. I still couldn’t write anything down. But I felt free in my mind. My family thought it was very amusing. In fact, some of my ideas made sense. But I could still tell something was off. I had obsessive thoughts. Once my mind fixed on something, I couldn’t let go for hours or days.
Over time, I went through cycles of a few days of somnolence, in bed the entire day and sleeping all night, and then a day or two of energy.
My digestion was variable. Sometimes loose stools, sometimes difficulty passing stools. But it got harder and harder to eat, and I had less unless appetite. I developed hemorrhoids from the difficulty passing stools. One day I had so much diarrhea that my hemorrhoid got out of control. This stimulated a vagal response. I lay on the floor dizzy, in a cold sweat, and shaking, until it passed. I spent the rest of that day in bed.
Some nights my mind couldn’t slow down. I composed blog posts and articles that I have yet to write. And yet, I couldn’t hold a pen, I couldn’t look at a computer. I felt manic. Or, as they say, hypomanic, since I didn’t go out and try to buy a few cars.
Some things were starting to get better. After a lot of problems with my joints, the pain diminished. Looking back now at my journal of symptoms from that time, the list of symptoms began to diminish. What was left were the cognitive changes and the problems with my appetite. I started to feel cold all the time. I was sleeping a lot. And then my hands started to tremble. I recognized tardive dyskinesia. That’s when I knew I needed to stop taking disulfiram.
I took a few days off, and I started to feel a lot better. The cognitive function eventually got close to normal. Food was still a problem. But I desperately wanted to go back on disulfiram. After my days off, I tried taking 250 mg. After two days I reduced it further to 125 mg. Even at this much lower dose, I had the feeling on my head that I was being pulled towards numbness. I got the sweet-rotten flavor in my mouth whenenever I ate.
Then, on a Tuesday morning, I had severe neuropathy in my left foot. It felt like someone stabbed the top of my foot with a hypodermic needle. I ripped off my shoe and sock, expecting to see something biting me. Nothing was there, just pain. It was different from any other kind of neuropathy I’d ever had before. Something told me I just needed to stop taking disulfiram. So I did. My body needed a break.
All the problems stayed with me for a full two weeks, including intermittent neuropathy in my feet. It took a long time to get out of my system. My cognition was a little bit off. Food was still a problem, both eating, and my body having negative reactions to foods that stopped triggering me years ago. At the lower doses, as well as when I stop the drug altogether, I had Lyme and Babesia flares. The night sweats came back. I had migraines. Nerve pain returned. My muscles and tendons were achy. I started using the coil machine for Lyme and Babesia.
Between the coiling and being off the drugs, I slowly started to feel like myself again. The main good thing is that the joint pain has been gone. And it stayed gone. My sleep has been better, but that has been less consistent. I’m still somewhat symptomatic for all three infections.
A month later, and a lot of coiling later, the symptoms are less bothersome, but I still suffer from a fair amount of fatigue.
Next time around
I have many disulfiram pills left. Even though part of me wants to start taking it again today, I think that’s too soon. I’ve only been able to eat properly for about a week (this is almost two months after stopping). My current plan is to try again in April.
Having read the stories of people staying on fairly low doses, 62.5 mg or 125 mg, for months at a time, suffering few side effects, and seeing slow but steady improvement, I think that is what I will do. I’ll continue to use the coil machine for Bartonella, and initially for both Lyme and Babesia.
I’m willing to accept the slow but steady approach, the same approach I use with the coil machine. I’m no longer desperate for the three-month solution that I read about in the first reports of disulfiram. If I have to be on it for a year or longer, that’s okay, as long as I see improvements. Honestly, the things I missed were vinegar and soy sauce, the only foods that I eat that contain trace amounts of alcohol. I can live without them and chocolate if it gets rid of theses infections.
The other benefit to the slow but steady approach is the reports of few to no side effects. I would like to be able to eat food. I would not like to feel crazy.
Tomorrow is my 45th birthday. What I keep thinking about is that I no longer want to try heroic means of getting rid of Lyme disease. I’d rather have function in my daily life and stop losing months at a time. I don’t have complete control over this, but the control I do have I will use to make a livable life and do what I can to be the person I want to be in the world despite the limitations these infections put on me.
Categories: healing process