Coiling for Lyme

Trying to cure one case of Lyme Disease


This is the biggest month I’ve had in three years. Perspective. I totally overdid it and suffered the whole way when I got married, three years ago in August, but I enjoyed every moment of it because I was celebrating a new phase in my life. New phase. New hope. New challenges.

This time, I had a series of events that just happened to fall all in a month. If I could have planned it, I would have spread them out more. But every moment was worth it. As I write, I’ve been recovering for a week. The month drained me and gave me a massive chest cold. Amazingly, however, I’m not beaten down. Just way too tired to do more than rest.

The kids help me rest by stealing my pillows.

The kids helped me nap by stealing my pillows.

I wrote in the last post about camping and the garlic festival. When all that was over, I headed to NYC to help my parents pack to leave. From there, I went to Virginia to help them settle in and see my sister’s family. It was a lot of work, a lot of play and not enough sleep. If I had been well-rested before I left, it would have been easier, but it was a good trip. I learned about how much strength I’ve built up as well as how much more endurance I have than I did even this time last year.


The first stop on my trip was Jackson Heights. My primary goals were to help my parents pack and to see a few friends. Packing was its own marathon. Before I left, my mother told me she was almost done. It turns out we have different definitions of almost. We spent all day Friday doing errands. There were a lot of last minute details to take care of. Then all day Saturday, there were a stream of well-wishers who will sincerely miss my parents. I was glad to see the visitors. I don’t think my parents realize what a profound impact they have on the people around them.

But I digress. I spent the day packing the kitchen, sealing 50 already packed boxes, rearranging boxes, and packing other rooms when all that was done. I could lift more than I realized. And I could stand for longer than I thought. At some point, I got too tired to stand, but once I sat, I was able to keep going.

Sunday, we were still packing, even as a few last people came to say good-bye, and my cousins arrived to drive my parents to their new home. The packing continued after a break for lunch, and kept going until 11pm. I was sorting and packing and discarding after they left. Again, I was surprised at how much I was able to do in a day.

Mom in the backseat with final instructions.

Mom in the backseat with final instructions.

Dad says, "One last thing before I go..."

Dad says, “One last thing before I go…”

The final packing happened while the movers were beginning to load the truck. It was crazy. I was doing my best with the last few boxes when they gave me an already packed box and said it was too fragile. So I redid that box and finished what I had to do. After a short break, I began cleaning, sorting the garbage from the recycling. I uncovered a few things that needed to come with me in my suitcase, because there were no boxes left. Later in the day, on Monday afternoon, I dragged my suitcase and some random items that I needed to give to people in the neighborhood to my friend’s house in 90+ degree heat. I was ready to crash. But not yet. I still had to make a trip to the mall to return the cable box before I left town.

That night, after saying good-bye to some friends, I got to sleep and, in the morning, sleep in. It was fabulous. I just needed the rest so badly. I went for a quick walk around the neighborhood, took care of last minute business and headed to the airport. Due to various plane delays, a very helpful gate agent moved me to a direct flight (Yay!) to Virginia which left 4 hours later (Boo!). I didn’t get to my sister’s house till after midnight.

The reason I write all this out is that this kind of activity level was absolutely unimaginable to me for most of the past 8 years. I’m not sure I thought I could do all that when the plane landed at JFK. When I moved to Watsonville three years ago, I took a month of doing packing activities for 1-2 hours a day. Then I rested. It took me months to unpack. And I brought less than 250 cubic feet of possessions.

There is a cost to using all my strength this way. I could have spent a week or two in bed after five days in New York. That was not possible. For the next week that I was with everyone, I was using up my reserves. Then my deep reserves. Then my for-use-only-in-emergency reserves. Which is why I was so sick when I got home.

Family Time

Despite the fact that I was in need of sleep, coiling, and daytime rest, I had a fun and fabulous time with my family. My sister’s house was full of life and activity. The children showed up in my room before seven every morning, ready to read or play or bounce on the bed. There was the morning chaos before they left for daycare, then I had a little time for myself. Early afternoons were for doing errands with my parents. Then the kids came home and it was time to play again: more reading (and interpreting and acting out of books, along with explanations of things in the books that were new to the readers), more play (I make a very good dragon when it is time to be slain), water games in the backyard and on and on.

Whenever possible, I snuck in a nap, there was no way I could survive otherwise. I did a better job going to bed by 10ish than I have in the past. I needed every moment of sleep that I could get. Unfortunately, the Bartonella was catching up to me and giving me insomnia.

The weekend was wild. Even though I couldn’t participate in all the activities, I went to swimming class on Saturday and played in the pool with the kids and my brother-in-law. It was gently rowdy, with the kids splashing the adults, and the adults making sure the kids weren’t overwhelmed in the water. They loved it. On Sunday, we paddled around a lake for a while and played in a park. It was fun and very active.

I used Monday to rest a little and help my parents some more. Tuesday and Wednesday, I went to Busch Gardens with one child each day. Tuesday, I wore motion sickness bands on my wrists and got on rides with my nephew. Wednesday, I carried my niece all over the place to find a place to play in the water. The kids had a great time. I got to bond with them through play and adventure.

Thomas and I went on rides together, including a roller coaster!

Thomas and I went on rides together, including a roller coaster!

Rose picked out her favorite purple horse on the carousel.

Rose picked out her favorite purple horse on the carousel.

Somewhere in all this, I squeezed in a lunch with my sister. We got to talk about how life will change now that my parents are closer to her. I expect I’ll be visiting 3-4 times a year, as long as I’m able.

The airport was a super emotional scene. The kids were wailing as I waited in the security line. I got teary. So did my sister. The man behind me in line asked if this was my first trip away from my children. I laughed. I told him I was only the aunt, their mom was holding them. They were back to laughing on the way home from the airport.

The flight back did me in. I arrived in San Francisco at midnight, local time. By the time we got home and settled, it was close to 2am. I was awake for way too long. The cold I’d caught on Saturday after swimming, turned into a major infection.

Well and Not Well

Before I was taken down by Lyme Disease and had to stop working, I used to push myself to my limits for other people. I would give my all to work, to organizations I participated in, to my family, and to my friends. I would give and give until there was nothing left for me. I got sick with some frequency, after the tick bite in 2001, but not often enough to learn the lesson that it was okay to reserve something for myself.

Now, I’ve set up my life in Watsonville so that I don’t have to give more than I have. I give myself adequate time to rest, to exercise, to do coil, to socialize, and, when I’m up to it, to work on my writing. It is a more nourishing existence. This has been a very necessary change to be able to heal from the chronic tick-borne illnesses.

When I go to the east coast, when I see family and friends, the time is compressed, and I have to do more in a day than I’m comfortable with. There is no way around it. I know that. I don’t blame them, they live at a different pace than I can handle. It’s up to me to figure out a way to take care of myself, to skip the activities I can’t handle, to rest or lie down as needed, to make sure I’m eating foods in the right proportions. It isn’t anybody else’s job.

I just hate to see my limits so starkly. At home, I feel well often enough that I see myself less and less as disabled. Away from home, I feel unwell, so that even as I do more, I know I’m heading for a crash. Then when I crash, I feel as disabled as ever.

Crash Landing

When I got back to California, I was too amped up to settle down and rest. I slept the first night, but I was up before 8am, not quite ready to get out of bed, but too restless to stay in bed very long. There were things that needed to be done. I’m taking an online writing class, and this was the week that I had to prepare a writing sample for the class to comment on, in addition to the regular homework. I had a friend over for a day before she left for a very long trip. I wanted to go to the beach and the farmers market and cook and generally be at home. So I did all that. I had lots of coiling to do, too.

It took until Sunday for me to slow down enough to realize that I wasn’t going to shake the upper respiratory infection if I didn’t rest. The big hint was that I was coughing and having pain in my trachea and bronchial tubes. I now had a chest cold. I had to rest to prevent it from getting even worse.

Monday was my first pajama day. I still worked a bit on my writing, but other than that, coiling and resting were the top priorities. Resting only made me discover how much more rest and recovery time I needed. My husband and I postponed our anniversary celebration so I could rest during the day and coil as needed. My only excursions were to the acupuncture clinic to see if I could give my body a boost.

It’s now Friday. I’ve been mostly home and mostly resting all week. I finally feel up to working on the computer. I need a few more days of being low-key to finally get over the cough.

Coiling the Chronic Infections

I noticed that things were going wrong while I was traveling, but I didn’t complain. I toughed through it because I wanted to be part of the daily adventures. But, in the background, I knew I needed to get back to the coil machine.

While I was away, I had neuropathy in my limbs, mostly at night and in the morning. Along with the cold, my intestines got out of whack, alternating between too slow and too fast. My joints flared up the night before I came home. The two flights were painful because all my joints were aching as we took off, only to get worse over the course of the flight.

When I got home, I knew it was coiling time. I started with Lyme because the joint pain was so bad. There was overnight relief. But the symptoms came back, so I’ve been coiling every third day. This could be an early autumn flare. Or it could have been PMS. Or my immune system is distracted by the chest cold.

I was concerned that the cold might trigger Babesia or that Babesia was behind my sudden tiredness. Even though I knew better, I thought it wouldn’t hurt to coil for Babesia, so I did that the second day after I got home, and one more time for good measure.

Other than that, I’m working on Bartonella. After only a few days of coiling, my kidneys hurt. So I know it’s active and likely reproducing. I hope I haven’t lost too much ground.

Once I get past this chest cold, I’ll be back on track with my regular life. Coiling Bartonella, chipping it away, until, hopefully it goes into remission. Then we’ll see what comes next.


Categories: healing process

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