Let me start with the update. Tonight I take my fifth dose of disulfiram, 62.5mg in the evening. Each subsequent dose after the first one has led to a smaller and smaller Lyme herx. At this point, I think I will increase the dose after the sixth dose (no need to knock myself out for Thanksgiving). The herxes are less apparent in the headaches, brain fog, and other neurological manifestations. Instead, about two days after each dose, I have an overall rise in my pain level, in my joints and muscles, that lasts for about a day. I recognize that as part of a herx from my early days using the coil machine.
While the disulfiram seems to be helping with Lyme a little bit, mostly I’m using the coil machine to treat Lyme (in my central nervous system). It keeps the amount of active infection low, so when I take my dose, I don’t end up with a big herx in my brain. The other co-infections seem to be causing more of a problem.
Last year, when I tried disulfiram the first time, I figured that 3 or 4 months of complete disability in return for eradicating Lyme in my body was a reasonable deal. That didn’t work out. I’m back to my long-term plan which is to do my best to chip away at Lyme and the co-infections, while at the same time being able to function in my daily life. Before I started the disulfiram, Babesia was in a remission, or at least had no noticeable symptoms as long as I stayed on Tribiotics by Nutricology. Bartonella was mildly active and required coiling once a day (on my central nervous system) to keep the tingling out of my arms and legs and reduce the frequency of migraines. I was hoping that this would continue with the low dose disulfiram, despite my previous two experiences that disulfiram seems to activate Bartonella.
A summary of my impression of low dose disulfiram on each of the chronic infections I carry:
- Lyme: At low doses disulfiram seems to chip away at the infection, but not inactivate it. Unlike antibiotics and some herbs, there is no relief from putting the Lyme into cyst/dormant form. Instead, even at low doses, disulfiram seems to kill or activate the cyst/dormant form and cause mild symptoms in addition to herxes. My previous experience with disulfiram suggests that at higher doses, it kills a larger portion of the infection, but never reaches a point of suppressing it.
- Babesia: At low doses disulfiram seems to activate Babesia. In the weeks that I’ve been on it, Babesia came out of remission/dormancy, and I was plagued with night sweats and all-day fatigue. At higher doses, like I took last year, it seems to start killing the Babesia cells, which led me to crave higher and more frequent doses. However, I was not on it long enough to determine whether it could get rid of my case of Babesia.
- Bartonella: At low doses disulfiram seems to have a mildly toxic effect on Bartonella, causing a hint of a Bartonella herx (which is different from a Lyme herx), and then it makes Bartonella much more active. At first I thought that this was because Bartonella gets more active as Lyme becomes dormant (Lyme bacteria partially suppress Bartonella activity), but now I’m seeing that even with Lyme still active, Bartonella activates in the presence of low dose disulfiram. Unlike Babesia, which seems to get killed by higher doses, Bartonella seems to get worse at higher doses of disulfiram.
What do I do with all this information? Well, it seems that I need separate strategies for each infection while I’m taking disulfiram. Lyme seems to stay under control with disulfiram plus 12 minutes of coiling in 3 minute increments on each section of my spine plus the back of my head. I’ve been doing it most days, but when I’m squeezed for time, I can miss a day without consequences.
Bartonella seems to stay mostly under control if I coil my central nervous system for a total of 45 minutes a day, 30 minutes in the morning and 15 minutes at night. The only problem is that the infection is not diminishing. I’m living with constant herxing, recurrent migraines (now 2 to 3 per week), digestive troubles, and mood swings. I haven’t yet added in any herbs to suppress the Bartonella infection, although I have several options on hand. I’m trying to see if I can get to the next higher dose of disulfiram before I need them. The problem with any herbs/drugs for Bartonella (or Babesia) is that they stop working after a few months. So I have to change it up and change it again. I may start something this week if after tonight’s dose, the Bartonella gets worse.
Babesia is currently at a disabling level for me. I find myself lying in bed or on the couch several hours a day with a million ideas but no ability to concentrate or sit up to do things. After a few days of coiling Babesia three times a day, the night sweats are diminishing in intensity. In the past few years, it only took a week or two to get past the fatigue…except when it didn’t. Sometimes it goes on and on and I have to add in herbs to get Babesia under control. Fortunately, some of the herbs seem to have a similar suppressive effect on both Bartonella and Babesia. Again, I am trying to hold off for another two weeks before I start adding in herbs, but I’m not so stubborn that I won’t take them if the need truly arises.
Babesia was foremost in my mind last year when I ramped up disulfiram quickly. I could tell that disulfiram did something against Babesia and that more was better. I have a fear that with various treatments that are on the horizon, I may be able to get rid of Lyme and then Bartonella, but I’ll still get knocked out by Babesia over and over. I still feel some urgency about increasing the dose to a point where it has a more toxic effect on Babesia than the low dose I’m taking now. At the same time, I feel resistant to coiling as much for Babesia as required to keep it in check: a total of 72 minutes split over three sessions a day. It becomes its own time-suck. Yet, when it works, I have energy to do other things the rest of the day. Until a few days ago, I had time but no energy. Everything about these tick-borne infections involves a trade-off.
Finally, I note that I continue to take the full complement of detoxification agents that I mentioned in my last post. At this point, their primary purpose is to deal with the Bartonella herxes, as the Lyme herxes are not too bad at the low and infrequent dose of disulfiram.
Categories: healing process