I have now taken 12 doses of disulfiram at 62.5 mg one time per week. Taking it at such a low dose and so far apart, has allowed me to watch what happens after each dose. I chose this method because I had good results doing something similar with the coil machine back in 2011. Going at a slow pace, with a lot of time in between, allows the herx to fully exit my body before I begin to stir things up again.
I’m going to start with the reminder of what it takes to juggle the three co-infections that I have: Lyme, Babesia, and Bartonella. If Lyme Disease is active, Babesia becomes more active and can’t be put into a non-symptomatic state. So my general rule is to try to get Lyme into a low-symptomatic state or nonsymptomatic state before tackling Babesia. I have had remissions of both Lyme disease and Babesia at the same time, just using the coil machine. The only problem with this is that once Lyme becomes quiet, Bartonella gets activated. Since Bartonella requires coiling two or three times a day, it is most easily treated when both Lyme Disease and Babesia are relatively quiet. Treating Bartonella is tricky because it’s torture to treat it slowly and remain symptomatic, yet treating it aggressively seems to reactivate Babesia. I have never been asymptomatic for all three infections for more than a few days at a time.
I’ve been doing this for almost 10 years now, and I have found that to be as functional as possible, it works best to treat Bartonella slowly and gradually. If I keep up with the herxes, then I can live with Bartonella for months and months. Babesia and Lyme disease tend to be the ones that drain my energy and make me need to rest for hours and hours a day, so even with the headaches and discomfort and neurological symptoms of Bartonella, those have been the best periods of my life since the tick bite.
Unfortunately, stress, food, environmental, emotional, and seasonal triggers can reactivate Lyme disease or the other infections. Each of my previous “remissions” has ended as a result of an external trigger. In addition, exercise that pushes my limits always reactivates Babesia. Lack of rest, even without exercise, reactivates Lyme. After a trigger, I first coil for Lyme disease, then Babesia, then Bartonella, using the coil machine until I’m back on my feet. Then I do maintenance for Lyme disease and Babesia while I treat Bartonella.
The “Low & Slow” Approach
This is where we get to disulfiram. As I mentioned in my last post, disulfiram act as a trigger that reactivates Bartonella and Babesia. Even as a low dose kills Lyme slowly, as both a cyst buster and a mild bactericidal agent, it also seems to send the Lyme infection into overdrive. The benefit of taking disulfiram more frequently, which I tried previously, was that it had more of an effect on the Lyme infection. This time around, it is mostly acting as a cyst buster, with the coil machine picking up the slack against the activated infection. It also means that I have to coil every day for both Babesia and Bartonella because they keep getting reactivated with each new dose.
I don’t think I would be able to stay on this low dose of disulfiram without the coil machine.
While the coil machine is able to push back the activated infections, it doesn’t put them into a more dormant state. In contrast to antibiotics and many of the herbs I’ve tried, each of which has given me both a herx from the dying bacteria, as well as some relief from pushing the infections towards a more dormant state (and creating cysts or other forms that resist the chemicals I’ve imparted the infections with), the coil machine only gives me herxes.
Shortly after the last blog post, I added oil of oregano, two drops per day, and Tribiotics from Nutricology, two pills twice per day. The oil of oregano initially made me herx more for Bartonella, but then quieted it down a little as long as I continue to coil my central nervous system twice a day. The Tribiotics slowed down the Babesia infection, allowing me to have some days when I didn’t have to coil for Babesia three times per day. However, neither coiling nor Tribiotics has really kept the Babesia from being symptomatic. I’ve been having migraines, night sweats, and days where I need to just rest on the couch for much of the day. Eventually I stopped the Tribiotics to give my liver a rest and see where my Lyme symptoms were.
Despite the drawbacks, after 12 doses, I stopped having a Lyme herx reaction after taking disulfiram. Initially the herxes were headaches and spine pain. Then they moved into joint pain in my shoulders and hips. In response to these reactions, I coiled for Lyme on the affected areas (in addition to coiling my CNS daily), because I wasn’t sure if the cyst busting activity also killed the Lyme bacteria, or whether in the process of waking up the cysts, it would cause the Lyme bacteria to replicate. All the way through the 10th dose, I had diarrhea for the next day or two. After the last dose, I couldn’t tell that I had taken disulfiram.
My plan this evening is to increase the dose to 125 mg, still taking only one dose per week. I expect there to be a herx tomorrow, though I can’t predict what it will be. My longer-term plan is to continue taking the 125 mg dose until I no longer herx from it. There’s no way to predict whether that will be another 12 weeks or even longer.
When I first read about disulfiram, I thought of it as a way to finally get rid of Lyme and hopefully Babesia over the course of a few months. Instead what I learned is that I have a lot of dormant Lyme bacteria that the coil machine never touched and which give me really bad herxes when I take disulfiram. On this, my third try with the drug, I’m using it in a totally different way. I’m still hopeful that at some point I will be able to take a high enough dose to get rid of Lyme Disease and Babesia. But after 14 years of trying to deal with the three infections that totally took over my body, I recognize that my urgency to feel better and no longer be disabled cannot translate into a fast miracle cure. Instead, the ultramarathon of trying to heal now has a new stage with disulfiram moving things forward. I remain hopeful that disulfiram will be able to do things that none of the previous treatments were able to accomplish, namely to get rid of all the dormant Lyme bacteria that are always lying in wait to relapse at the first trigger.
Categories: healing process