Coiling for Lyme

Trying to cure one case of Lyme Disease

Second Shot and Moving On

I got my second shot of the Moderna covid-19 vaccine back on May 22. Like many people, I had some arm soreness, some body aches and sleepiness, but after two days, I was fine. In fact, I was better than fine. I felt about as well as I have in the past year. Although I haven’t joined the covid “long-haulers” community, my body hasn’t been right since I had a mild case last March. After the second vaccine, I felt like a million bucks. The ache in my chest went away and my bowels normalized. I stopped being tired all the time. It would have been worth it to get the shot just for that week of feeling good. (Of course, there are other benefits, like protecting myself from getting reinfected and infecting other people, as well as being able to go out of my home without the constant worry.)

Unfortunately, about ten days after the shot, I relapsed back to diarrhea, the feeling like I need to cough, fatigue, headaches, chills, and a pain in the bones of my spine. (The last one is not on any official list, but it started after the covid-19 infection and recurs at the same time as the other symptoms.) I have ideas, none of which have been shown to be true in the scientific research, but here goes. I think that with the trio of tick-borne infections I carry, my immune system is partially suppressed and doesn’t mount a proper response to new infections. As a result, the covid-19 infection never fully cleared, and instead, joined the other chronic infections in places where my immune system can’t reach or doesn’t function.

When I relapsed, I got depressed. It was ugly. I had just finished reading Chronic, by Steven Phillips and Dana Parish, where Dr. Phillips talks about how much success he had with pulsed antibiotics giving people back their ability to function. I was imagining a path out of Lyme-induced disability. I thought about being on disulfiram for the next two years, slowly building up my tolerance to it, while also treating Bartonella, with a two-week-on-two-week-off antibiotic regimen, as described in the book. I imagined reaching a point where I might get rid of Lyme and Babesia (which seems to go away for people who can tolerate high doses of disulfiram for long enough), and be left with only Bartonella. I thought, maybe, that treating Bartonella would be more effective, if the other infections were gone. Or, at least, I could get back to 75% health, and be able to enjoy my life with less pain, fatigue, brain fog, and other limitations. I would be able to do more writing, art, activism, exercise, and even go back to work some day. Then when the covid-19 related symptoms came back, I felt like a fool. This is my life. Disabled for significant periods with some good days in between to cram in whatever I can. Doing occasional fun things with a backdrop of pain and fatigue. (Of course, I’d rather be at a beautiful lake in the Sierras with a migraine than at home with a migraine, given the option.)

Tioga Lake

Joe and I had planned a trip to the Sierras for two weeks after my second shot. Even though I felt awful, I went anyway (and had the chance to experience a migraine near a beautiful lake). While we were on the trip, I had my ups and downs, but my mind cleared. I’ve learned to live with all these problems and still make a life where I am happy for at least part of every day. I prioritize the things that are important to me or that I enjoy. I don’t finish anything nearly as fast as I’d like to, but over time, some of my goals and projects are completed. (There are still lots of half-done things that I don’t have the energy to deal with, given that there are new things to do as time passes.) I’ve learned to be “in the moment” more than I did when I was well. So, I can live with whatever life throws at me.

The disulfiram and the idea of pulsed antibiotics is still a good idea. If I can gain any more daily function, I’ll take it. If I can stop suffering from one or more of the infections, all the better. If I can actually get rid of one or more, well, there’s no reason not to try. If I remain disabled despite these attempts, I’m no worse than I am now. My attitude determines how I feel emotionally, despite the stresses of my physical problems.

Post Vaccination Plans

Now that I’m vaccinated, we went on the trip to the Sierras. Slow walks (not hikes), staring at trees and mountains. Then we went to a baseball game. I wore my mask when there were people in the seat next to me and when walking around. It felt strange to be around so many people, but I enjoyed the breeze and the game. Next I’m flying to Virginia to see my family for the first time since last summer’s apocalypse road trip. I’m nervous about flying. I made a few more masks, so I would have fresh ones to wear on the plane. (And I’m bringing extras to change masks every few hours.)

I started the very low dose disulfiram, 62.5mg once per week, thinking that at that dose, Bartonella wouldn’t be a problem. Wrong. I’ve taken it several times before. Each time, I’ve had major Lyme progress, which doesn’t completely disappear before the next round. Each time, the Bartonella eventually gets activated. I just didn’t imagine it would get activated so soon. For the past few months, I’ve been coiling for Bartonella once or twice a day. After the second dose of vaccine, I consistently coiled Bartonella twice a day. Now, I have to coil three times a day, and I feel overrun with Bartonella. It started with tingling in my arms and two migraines. Now I have pain in my soles upon waking, along with pain like an elbow-length glove in both arms and like knee-high socks in both legs. Definitely Bartonella symptoms. My glands swelled a bit, I have a sore throat, and my vision is getting worse again. Bartonella. After a few days of coiling three times a day to deal with those problems, my kidneys hurt, and my bowels have gone from too loose to too dry, along with lower abdominal pain.

My original plan was to see a doctor first, but when he wasn’t available until after my trip to Virginia, I thought I’d get started. I’ve learned valuable information. The Lyme herx at this low dose is barely noticeable, just some stiffness in my spine, but the Bartonella activation is pronounced. Good to know for when we make a plan next month.

I’ve decided not to continue the weekly dose until I come back from my trip. I won’t have the coil machine and instead will be relying on a variety of herbs. It seems cleaner to take the herbs I know usually work in the absence of disulfiram, rather than test whether they work together. I’d like to spend my time with my family, not lying in bed suffering from Bartonella.

I’m going to give myself a week or two to recover from the trip, then I’ll begin the next round of disulfiram, and hopefully have a plan to reduce the hold that tick-borne infections have on my life.

by Rose K. Murphy

Categories: disulfiram

Tags: , , ,

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