I’ve now been taking Disulfiram for a month. I started with a low dose, 62.5mg every three days. After two weeks, I moved up to 125mg every three days, but it felt like too long between doses. After checking in with my doctor, we made it every other day. After five doses, once again, I felt like it was too long between doses, so we moved up to every day. That was when I started to feel like Disulfiram was doing something. (The rest of the dosing to the present is a few paragraphs down.)
Like most of the folks in the Lyme community, I read about the long half-life of disulfiram. In fact, if you google “disulfiram half-life” you’ll get lots of misinformation from drug addiction recovery websites. They say that the half-life is 60 to 120 hours. Let me start by correcting that information, instead quoting a study listed on the NIH website:
Half-life (T½): In a study of male alcoholics receiving 250 mg disulfiram as a single dose and as repeated doses over 12 days, the apparent half-life was 7.3 hours for disulfiram, 15.5 hours for diethyldithiocarbamate (DDTC), 22.1 hours for diethyldithiocarbamate-methyl ester (DDTC-Me), 13.9 hours for diethylamine (DEA), and 8.9 hours for carbon disulfide (CS2). CS2 in breath had an elimination half-life of 13.3 hours.Faiman MD, Jensen JC, Lacoursiere RB. MD. Elimination kinetics of disulfiram in alcoholics after single and repeated doses. Clin Pharmacol Ther. 1984;36(4):520-526.
I understand why drug addiction programs suggest a much longer half-life. For people who may be tempted to consume alcohol, even a small amount of disulfiram can cause a life-threatening reaction, as can its metabolites. In addition to the half-life of what can be found in the urine and bloodstream, since disulfiram and its metabolites can be stored in fat tissue and released at a later time, a person should err on the side of caution and wait two weeks for it to be completely eliminated from the body before consuming alcohol.
This reasoning does not apply to people attempting to use disulfiram to kill a microbial infection. First of all, we have no information on whether the metabolites have any effect on the infections. Second, the peak in the blood stream has been reported to be 4 to 5 hours after a dose, after which the body begins to break it down and eliminate it. If we estimate that the half-life is 8 hours (for easier math), then twenty four hours later, the amount left in the body is one eighth the original dose (about 12%). Forty-eight hours later, it is down to the 5% that can linger in the body for up to ten days. (Except in some studies where the body stops eliminating it at 20% of a repeated dose and that 20% lingers for over a week.)
As I mentioned in my last post, I worry about babesia becoming resistant to disulfiram. What it felt like when I was taking the doses very far apart was that after the first 24 hours, the babesia was resurgent with mild symptoms (such as night sweats). Thus it made sense to increase the frequency of dosage to daily. I decided I did not want a small amount of disulfiram lingering in my body at a level that doesn’t kill microbes, but instead acts as an irritant, while the microbes evolve a way to survive it.
As I have been increasing the doses, the goal is to increase the peak of the drug in my bloodstream, and fat tissue which is how it will eventually cross into the nervous system, to tolerance. At the same time, I want the troughs to be not so low that they allow barely resistant babesia and other tick-borne infections to survive.
I came to an agreement with my doctor that I could increase the doses as tolerated. I understood that he didn’t want me to go up a level every night. Instead, I decided to go with the schedule that I’d read about by many other users online. It seems that when a person hits the first therapeutic dose, it takes about three days at that dose to begin to herx. Thus, I am giving myself a minimum of three days between dosage increases. After 4 days in a row at 125mg, I increased to 187.5mg (3/4 of a 250mg pill). After 3 days, I increased again to 250mg. That was last night.
I felt a bit better at the 125mg daily dose. Some energy in the morning and increased activity levels during the day. I thought I might be herxing a little, mostly bartonella, mostly with mild kidney pain. I took chanca piedra in the mornings (about 12 hours away from the nighttime disulfiram dose) for a few days. Then I got my first migraine in a month. Since migraines seem very correlated to an increase in the babesia activity, I increased the dose that night.
Again I felt better the first day on the 187.5mg dose of disulfiram. The second day, I had a bit of a Lyme herx: loose bowels, a headache on the top of my head, and about three hours of sleepy fatigue (as opposed to tired and wired). By the end of the day, I was okay again. With no more herx the third day, and a shocking reduction in the abdominal swelling I’ve been experiencing for weeks, I decided to bump up to 250mg.
This morning I have a bit of a headache and I had temperature regulation issues during my morning walk. Despite the cool temperature, the breeze, and the slow walking with stops for the dogs to sniff flowers and mark bushes, I got super sweaty and had to change my clothes when I got home. Sometimes this symptom is bartonella or babesia. I don’t know yet. But the plan is to stay on the 250mg dose until I’m ready to increase again.
I suspect that, since I have been coiling for a better part of a year, the amount of active infection is small (but not gone) and continuing to wake up slowly. I don’t expect a big herx until I reach a dose that kills the dormant and well protected phases of Lyme: cysts and biofilms.
Peaks and Troughs Part 2
When I went to the doctor last month, he asked me to look at the Dynamic Neural Retraining System by Annie Hopper. He said it might help me with fatigue. I thought it was a good idea. I bought the at-home program (less expensive than one visit with a Lyme doctor) and have had it on the shelf to do as soon as all my guests had come and gone.
Last week I read the basic premise, that the limbic system can get stuck in the “on” position after a major trauma. The traumas are listed as chemical exposures, infections, major emotional or physical damage. Then, after the trauma has subsided, rather than the limbic system returning to “standby,” it stays on and diverts the body’s resources to overreacting to non-threatening stimuli. However, through conscious thought and repetitive training, one can take a non-conscious process and rewire it back to a healthy state of “standby.”
The testimonials are pretty extreme, for the most part, and are specific to multiple chemical sensitivities. However, they also remind me of mast cell activation syndrome. I haven’t suffered from either of these.
I’ve been, not exactly skeptical, but maybe reserved, in my judgement of whether this will help me with the chronic tick-borne infections. I think of the possible limbic system damage as similar to the osteoporosis that has been one of the damaging side effects of the tick-borne infections. They didn’t necessarily cause the osteoporosis, but they did prevent me from walking for a few years, and limited my activities for even longer. I think the stress of the infections, especially the food poisoning that cascaded into leg paralysis by allowing the tick-borne infections to overcome my immune system, could have had an effect on my limbic system.
I don’t suffer from the negative thinking patterns that the people in the testimonials talk about. I am the heroine of my life. I push my limits. I am always seeking a way to overcome the infections and the effects of being sick for so long. However, unlike some of my peers who have been able to go back to work after using a coil machine for less time than me, and less aggressively than me, I continue to suffer from fatigue.
The only thing in the book that spoke directly to me was the panic that one woman described, panic at things that will require a lot of energy, and that are an ongoing commitment. I feel that panic. I can pull myself together for a few days (maybe as many as 10 days), but then I crash. I don’t like to commit to more than 1 day of activity per week, to allow myself as much rest as I need to do the minimum I need to keep going, and to treat myself with extras (like blogging or other small projects).
I’m about to start the DNRS program…even if it seems I’m not supposed to do it at a time when I need to pay attention to symptoms (to decide when to increase the disulfiram). I’d like to get to a point in my life when I can treat the infections as needed, but not be chronically disabled by them.