Coiling for Lyme

Trying to cure one case of Lyme Disease

Disulfiram until I needed to stop again

When I last wrote, I was about to start a higher (and yet still minuscule) dose of disulfiram. After 12 weeks at 62.5mg once per week, I increased to 125mg once per week on January 11. I stayed at that dose until my last 1/2 pill on March 22. Here’s what happened and what I learned.

Lyme Flares and Herxes

The first two doses of 125mg of disulfiram gave me mild herxes: joint pain in big joints and spine, need to sleep extra, slightly loose stools, moderate headaches, and tiredness but not in the soul-crushing way of Babesia. By the third dose, even this was waning, starting two days after a dose instead of the next morning. Then my seasonal Lyme flare hit. It usually arrives in the last week of January or the first week of February. Until the flare, I was coiling for Lyme on my head and spine 2-3 times a week, just to keep it from getting active beyond what the disulfiram controlled. Once the Lyme flare hit, I had more symptoms, more pain, more brain fog, and more herxing. The next three weeks were hard, and involved daily coiling for Lyme, but by the fourth week, the herx after a disulfiram dose was diminishing. By the fifth week since the start of the flare (and the eighth since the increase in dose) I had no herx. So nice. I scaled back on coiling to twice a week. I thought I could say at this dose for a long time, as long as the other infections didn’t get too crazy. By the 10th week, I was starting to herx again. I wasn’t completely sure why as I hadn’t become more Lyme-symptomatic. The herx was accompanied by the feeling that I was in toxic overload, specifically from Bartonella, but I’ll get to that soon. I think that if my detoxification systems were not backed up, I wouldn’t have experienced Lyme herxes again.

During this time, I was researching what I could about the covid vaccine for people with tick-borne infections. I watched a webinar by the Global Lyme Alliance (which hasn’t made the webinar available to people who didn’t register in advance) and came away with a few important thoughts, most of which will be covered in my next post. But what pertains to disulfiram was a moment when the doctors hosting the webinar said to look at the ingredients in the various vaccines to see if any are an allergen for you. I looked up the Johnson & Johnson vaccine, which was my plan at the time, and it contains ethanol (alcohol) as a preservative. I figured I would stop disulfiram two weeks before I became eligible, so I could take the first appointment available. The moment I thought about a planned stop, my mind became obsessed with stopping. The toxic feeling had landed on a plan. So I ended up stopping disulfiram after eleven weeks on the higher dose.

Babesia and Low-Dose Disulfiram

As I mentioned in my previous reports on this round of taking disulfiram, the dose 62.5mg once a week seems to irritate the Babesia infection and make it more active. I dealt with this by coiling for about 80 minutes a day (spread over 3 sessions, covering my whole body over the course of the day, and doing my major organs for 10 minutes each, using 570Hz and 753Hz in alternation). That worked for a while, but eventually, I had to add in Tribiotics for three weeks, along with coiling, until it calmed down. After the three weeks, I stopped the supplement and kept coiling for Babesia daily. That’s what I was doing when I started at the 125mg once per week dose.

The slightly higher dose initially didn’t help much more with Babesia. Or really, when the Lyme flare started at the end of January, Babesia got more symptomatic as well. This is what happens every year. When, after 3 weeks, the Lyme got quiet, Babesia followed suit. I stopped needing to coil for Babesia. It was just quiet. No symptoms. No night sweats. No headaches. No soul-crushing fatigue. It might have stayed that way, except that Bartonella got worse and worse. As usually happens in the week or two after major Bartonella activity, Babesia woke up and joined the party. I wasn’t sure at first if it was the toxic overload feeling that gave me night sweats or Babesia. I tried a few days of coiling for Babesia and the night sweats didn’t stop. I took two days off coiling altogether and the night sweats stopped. My energy got better, but was still low. This was evidence against Babesia as the root cause of the problem. Sometimes, however, Babesia is lurking behind the symptoms of another infection, and all I feel is the drain on my battery, making the amount of activity I can do get shorter by 10 minutes each day.

Bartonella and Low-Dose Disulfiram

Bartonella is the main reason I had to stop disulfiram, just like it was last year. My experience with coiling, prior to disulfiram, and without major herbs to fight the infections, is that I could get Lyme in remission followed by Babesia in remission. Then Bartonella would get worse, and I would need to coil for Bartonella 45 minutes at a time, three times a day to keep up, and the Bartonella herxes were painful. They involved abdominal pain, constipation, urinary hesitation, bitter smelling urine, headaches, crazy dreams, carbohydrate cravings, kidney pain, blood blisters/acne on my back and butt, and tingling in my limbs. Taking a variety of herbal supplements for detoxing, most importantly chanca piedra, would help me get through the herxes. The only problem was that I would get stuck in a cycle and never reach a Bartonella remission before the Babesia flared up again. There are only so many hours in a day to coil and the machine has to cool in between, so I would have to try new ways to do something about one or both of the infections (since nothing ever worked that well before something kicked up the Lyme again).

So, I went into this knowing that I might have Bartonella herxes that built up. I knew that as the Lyme infection became asymptomatic, the Bartonella infection would likely become more active. I had a bit of a plan, to take Japanese Knotweed and Tribiotics by Nutricology to push back on Bartonella (and hopefully prevent Babesia from going crazy). What I didn’t expect was for the disulfiram to turbocharge the Bartonella infection. Although it had been building very slowly for a while, maybe starting a week after the end of the Lyme flare, the Bartonella infection got worse than it’s been in years. I reached a point where I couldn’t think straight. I was lying on the couch in a fog waiting to be motivated to do anything. It felt like when I was diagnosed with depression in my 20s and was on too many psych drugs. I felt like the Bartonella infection had activated and was chewing through my nervous tissue, replicating like crazy, giving me both Bartonella symptoms and making the Bartonella herxes unbearable. In addition to the Bartonella herx symptoms described above, I had these Bartonella symptoms: major & frequent migraines (each 2 days long, 2-3 times a week), poor close-up vision, cardiac pressure, heart palpitations & racing heart, myoclonic jerks that followed a build up of electrical charge along a nerve bundle (at least that’s what it felt like), high overall pain level, pain in the soles of my feet when I got up in the morning, and a very depressed outlook on life. I was just waiting for it to be over and couldn’t think about what I could do to make that happen. (Fortunately, I had signed up for the GLA webinar and that gave me a clue).

So there I was, major Bartonella flare, coiling and taking herbs, having a major Bartonella herx, and on top of it I feel toxic. I don’t know how else to explain it. My nervous system was offering me random fleeting pains and crawling sensations all around my body. It felt like my nervous system was buzzing all the time, like a static background to all my experiences, internal and external. For the life of me, I couldn’t figure out anything at all.

A butterfly rewarded me for dragging myself outside to walk.

COVID-19 Complications

As I may have mentioned before, since last April, shortly after I recovered from a truly mild case of COVID-19, I’ve had bouts that start with sneezing and congestion for a day and turn into 3 to 7 days of exhaustion and diarrhea that induces bleeding hemorrhoids. (Sorry for the graphic image, but the point is that this isn’t normal, even for me while juggling 3 chronic infections.) The bouts are spaced 3 to 6 weeks apart. Needless to say that the stress of the seasonal Lyme flare followed by the Bartonella explosion has made the bouts more frequent. Maybe, in the absence of this additional burden, I would have been able to figure out how to reach out to my LLMD and get some help with Bartonella. (I’m hopeful that two doses of the Moderna vaccine will provide the relief it seems to be providing to the subset of COVID long-haulers whose primary symptoms are respiratory and digestive disturbances.)

Disulfiram Round 4?

At this moment in time, I think I want to try disulfiram again. As I type it, I know it sounds crazy. I can’t really explain why that make sense, but I’m going to give it a try. Some part of my internal knowing can tell that disulfiram has addressed parts of the Lyme infection that nothing else can touch. The major ways I experience it are the absence of a half-body pain that covers the entire right side of my body, and a reduction in the stiffness in my joints and connective tissue. It is easier to stand, walk, sit, stretch, etc. The half-body pain has returned each time I’ve been off disulfiram for more than 8 to 12 weeks. But the reduction in stiffness has lasted.

Another reason to go back is that I don’t think I can get rid of Babesia any other way. It has become resistant to every herb, drug, and combination I’ve taken. Coiling can put it into remission, but has no way to address the dormant form. I read that a higher dose of disulfiram has gotten rid of Babesia for some people. If I can get that far, I have a chance.

Finally, despite the torment of the Bartonella infection, I see no reason to let it stop me from getting rid of the Lyme infection. I suppose I could keep juggling them for the rest of my life (and if disulfiram doesn’t work and nothing better comes along, I will), but I would be thrilled to get rid of one or two of the infections I’ve been carrying since 2001, and have only one left to destroy. Maybe it will take another year or five or ten. But if there is a possibility that I can stop suffering from any of these infections, I plan to pursue it.

Categories: disulfiram, Herx reactions

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