In June, I visited Jackson Heights, the place where I grew up and where I lived as an adult for seven years before moving to California. I know the streets and the stores. I have friends there and recognize neighbors whom I knew more casually. I know how to get around.
Despite the ways in which I was in familiar territory, many things were different. The post office is in the same place, but across the street are new restaurants. Actually, all up and down the avenues, smaller stores have come and gone. The neighborhood park is under construction. My circumstances were different. Instead of living in my parents’ apartment or my own, I stayed with friends, since neither my parents nor I have apartments in New York anymore. I didn’t have access to a car, as I did when my parents were there. And I haven’t been able to ride the subways (without acute onset of a Lyme flare) in years. This time, I acquainted myself with buses to and from Manhattan for my high school reunion and other activities there.
So much was familiar that I felt at home and recognized how to do things. Yet this was a time where I had to do everything differently than before.
The rest of the summer has had that same theme. I’ve stopped long-term antibiotics before, but this time was different. I felt the competing desires to reduce the infection load quickly by coiling all the time and to do things with people, both visitors and my local friends and family. I had to wade through incapacitating fatigue, serious cardiac symptoms, and a recurrence of plantar fasciitis on both feet. I had problems with my intestines, felt like my peripheral nerves were staticky and suffered through more than a few migraines.
Healing from Antibiotics
I’ve faced all of these problems before. But many things were different this time around. First, I was in better shape coming off antibiotics this time than after the previous three-year stint of taking them. I didn’t have major fungal overgrowth, though I did need to rebuild my intestinal microbiome. I had better tools this time, like access to raw milk, a deeper knowledge of probiotic supplements, a new understanding of prebiotic foods, and a potent brand of bovine colostrum. My intestines improved a lot faster this time, though I continue to stress my body with herxes (causing diarrhea from Lyme and constipation from Bartonella), so I am still required to spend time each day making sure I take care of my troubled intestines.
I was in better shape in other ways. For example, I could walk and cook, which makes recovery much easier. I had a stack of books sitting next to a coil machine that I knew how to use. The first time around, my infection load was much higher. I felt more like a collection of pain and other symptoms than like a person. This time, I was stronger at a base level, and thus found the pain and fatigue much more annoying. Last time, I was terrified of herxing and had no idea what coiling would do. This time around, I don’t mind herxing because I know what to do to clear the herxes, and my body seems less toxic without the fungal infection on top of everything else.
One thing I did right the first time I came off antibiotics was that I stayed on a lot of herbs that have a suppressing effect on the tick-borne infections. This time, I just wanted to be off everything. That was fine for a few weeks, but then things went haywire. Babesia came back full force: headaches, night sweats, brain fog, and worst of all, crippling fatigue. The problem with this is that I can’t figure out what to do in the midst of the brain fog. I tried very hard to complete an illustration class, but I lost three weeks of it to sleeping all day and having no ability to work on the assignments. When I finally figured it out, there was only one class left. I coiled a lot for Babesia and tried my best.
I was still struggling and realized that Lyme was also active, so I reduced the focus on Babesia and tried coiling for Lyme daily (only so many minutes a day can be spent coiling before the coils need to cool off before being used again). That got me through for a bit. I took days off to go on a short camping trip and for one or two day trips with my husband. I found everything exhausting, but I was happy to be out of the coiling room. Better to suffer in beautiful places.
My sister’s family came to visit which meant ten days without coiling. I loaded up on several herbs (a combination pill called Tribiotic by Nutricology, plus extra artemesinin, plus a TCM herbal formula), and I did my best to keep up with everyone. I was okay until the last few days. The combination stopped working. I struggled to be active with my family and push through the exhaustion. It was worth every minute.
As soon as they left, I stopped taking all the herbs. That was a HUGE MISTAKE. What I’d forgotten is that, unlike antibiotics, which partially suppress the infections for a few weeks, the herbs only give me a day or two. All three infections (Lyme, Bartonella, and Babesia) came roaring back. I spent two weeks coiling and clutching my chest with cardiac pain, heart palpitations, and overall weakness. That was along with migraines, digestive distress, tingling all over my body, joint pain, and on and on. My only consolation was that I could walk the dogs around the block twice a day. I had no energy for cooking or even watching tv. It was rough.
Now my parents were on their way to visit. I got my hands on oil of oregano (which I ‘d never taken before and hoped that the infections would have no resistance to) and went back on the Tribiotics. I took extra artemesinin for three days, having read (again after having forgotten) that babesia infections can become resistant to artemesinin quickly and lose resistance in about 10 days and something about how intestinal flora can begin to digest it after a few days. It worked. After two days of this triple-whammy (and still coiling), I was back on my feet. I was tired but able to function. The other symptoms were settling down.
The day my parents arrived, I almost got hit by a car while walking the dogs. Someone put their car in reverse and sped down a side street to where I was walking in a crosswalk by a stop sign. I had to jump back and yank the dogs with me to avoid getting hit. The driver stopped in the crosswalk, looked at us, put the car in drive, and sped away. My heart was pounding, but at least we were safe. The fallout was heel injuries which triggered plantar fasciitis and muscle spasms in my back and neck that took more than the two weeks my parents were here to resolve.
I used braces for my feet and eventually began physical therapy exercises, both from the previous time I had plantar fasciitis. I asked my acupuncturist to help out with both the feet and the overall muscle tension.
My parents are less active than my sister’s children, which their visit easier to manage. Still no coiling, but the herbs worked the whole time. I was slowly increasing the dose of oil of oregano during their visit, trying not to herx too much and still reduce the symptoms of the infections.
When my parents left, I finished a second three day course of extra artemesinin, then stopped the Tribiotics. This time, I’m slowly tapering off the oil of oregano, using the coil machine to clear up the infections as they become more active.
A New Philosophy
When I started coiling in 2011, my primary goal was to get better than I’d been able to do on antibiotics. I wasn’t sure how much function I would get back. I didn’t know if I would be able to use the computer for more than a few minutes without getting a headache. I didn’t know if I would be able to walk around the block or get off medication to keep my blood pressure high enough to prevent fainting. As time went by, I saw huge improvements. I started to want to live again, to believe it was possible to get rid of the infections and go after all my postponed and abandoned dreams.
At some point, I heard about people who had used coil machines to achieve long term remissions. No one ever said cure. They said they became asymptomatic for years, or in one case, the person only has to coil two weeks a year during the August and February flares. That sounded really good. It carried me after I got married and revisited a once lost desire: to have children.
The idea of getting pregnant started out as a “let’s see how I’m feeling in a year” but helped me to persevere through ugly herxes and coiling fatigue. Coiling fatigue, as in, I got tired of lying on my back for three plus hours a day to do all the coiling required to keep making progress. It helped me to avoid taking medications that might suppress the infections and draw out the time before I achieved remission. It helped me avoid Advil and other drugs that get rid of the present moment’s pain but strain the detoxification organs.
In the aftermath of trying to get pregnant, and failing, I’m casting around looking for a new guiding principle. I want to achieve remissions in all the infections. I want to be pain-free (at least pain related to the infections) and symptom-free for weeks and months, years if possible. I’d like to find a cure or get access to one that someone else finds. That is a long-term goal. But I don’t know how to handle the day to day decisions. Do I spend more than three hours a day coiling? Even if it means I can do nothing else? Should I spend less time coiling and more time on nutrition and exercise, building myself up to be more resilient–even before remission? Do I spend time on the things that are “wants” like writing and art and activism, even if it slows down progress in other arenas?
Now that I’m looking at my life without a clear next goal, I’m taking time to revisit old decisions, learn more about how to live and cope with chronic illness, and envision a future that I find appealing. I’m still facing the same familiar struggles, physical, cognitive and emotional, but I’m negotiating this territory with new perspectives that come from the passage of time.