It’s been over a month since I’ve had the time and energy to write about coiling for lyme. It’s been a pretty busy period of my life. Despite my absence from recording my symptoms and experiments, I’ve continued to coil and to try new things. I’ve been back to the doctor because I had a severe symptom relapse while coiling for Bartonella. I learned some new things about using the coil machine on Lyme. I even got my first “hate mail”…And I’ve had some pretty huge life changes.
When I was last out in California for two months, my boyfriend, Joe, proposed to me. I said “Yes!” and decided to move. I told Joe in April that if he lived in Chicago, he’d have to move to me, but I love it out here. Since then, I’ve been doing the million and one things that moving requires…as well as planning a wedding.
Back in Jackson Heights (NY), I thought I gave myself plenty of time to plan the immediate details for the wedding and have a leisurely packing and moving process. I didn’t count on a major relapse of symptoms, 2 weeks in bed, family visiting from out of town, surgery on one of my parents and a whole variety of other things that slowed me down. Plus, I still envision myself as able to do much more than I can actually do. Fortunately, Joe came for a week and helped me get the packing started as well as did a lot of painting. I was working at my limited capacity right up to the last moment.
In any case, I’m very excited about where my life is going. It was on hold for about 5 years because of my health problems. Lyme disease had slowly been draining me for several years before the last 5 so that when I hit bottom, I had no cushion. All the things I’d been postponing (like finding enough energy to date or actually do anything other than work) fell to pieces. Once I got sick, I wasn’t interested in anything other than figuring out what was wrong and how to get better. It felt like a life sentence when, after several months of not being able to work and having no diagnosis, all my symptoms got increasingly worse. Then once I found out I had Lyme, I began treatment and felt even worse than before. It has been a long, winding, arduous road to get to where I am today.
Where I am today is pretty great. Being in love is a spectacular experience. I still have all my ailments and limitations, but they are slowly diminishing. I’ve got major support from Joe to pursue my dreams as I get better. My parents are still helping me in every way they can…and I miss them.
So I’m in Watsonville (CA) for about 10 days now and I’m starting to put together my life in a new way.
What about coiling?
While I was in Jackson Heights, I slowed down on my coiling program. I was pretty sure that the Lyme season had ended for me, so I stopped for two weeks. Not so fast, Rosie-rose! I learned something important that none of the other coilers told me about. I thought that once the herxes went away, I would be done for the season. That isn’t how it worked for me. Instead I had symptom creep. This is my term for when the symptoms slowly start appearing and not going away. Mostly I felt it in my joints at first. Then headaches. Then restlessness. Then fatigue. Then strange neurological issues, some of which may have been Bartonella (tingling in my hands and feet), but some were more like my experience of Lyme, such as excessive sensitivity in the skin on my legs. So I coiled a full-body coiling session for Lyme in one day. The next day I felt much better. No sledge-hammer herx. I had light sensitivity for a few days. Then almost a week later, I had Lyme-smelling urine. That was it. Now I’m back to coiling my full body for Lyme every 5-7 days. I plan to continue that through at least the end of July.
I slowed down on the Bartonella coiling protocol as well. I was doing daily full-body coiling treatments when I was in California. I was also going to a dry sauna every other day as well as drinking kombucha, going for walks, and taking lots of antioxidants. Still, I could feel something was going on with my kidneys, so I added in Renavive. I continued to coil daily in NYC. My kidneys couldn’t keep up. It seems that saunas are necessary for me to process the toxins emitted by Bartonella die-offs. As the days progressed, my digestive tract went haywire, I had tingling in my arms and legs along with severe muscle pain for large chunks of the day. I would get exhausted much more easily than I had been only a week earlier. My sleep cycle got interrupted and I couldn’t get myself to sleep deeply enough or long enough at night. I felt pretty toxic. So I added in extra acupuncture sessions, a liver cleanse (milk thistle for 30 days) and increased my water intake. I spoke to my doctor who suggested two supplements (neither of which really panned out). In the end, the only thing that helped was not coiling for Bartonella. So I stopped for over a week. The symptoms started to clear up.
Now I’m going more slowly with the Bartonella, at least until I get signed up again at the gym where the sauna is. I’m coiling twice a week. And I’m mostly trying to keep it at bay until I can try to tackle it again.
Fan Mail & Hate Mail
Thank you to those of you who asked why I hadn’t written in so long. Rather than bad news, it is good news that has overwhelmed my capacities. As I settle in, I’d like to empty my head of the many things I’ve learned about coiling, detoxing, and having a decent life while battling with Lyme.
Now for the hate mail: someone posing as a doctor told me not to believe what I read on the internet about Bartonella. Nice. I am one of the people writing on the internet about Bartonella. I had a good laugh. And I’ve been thinking a lot about sources of information, what we can and can’t believe and how much of chronic illness is about trying things for oneself to see what works.