Coiling for Lyme

Trying to cure one case of Lyme Disease

Red Onions

With the ups and downs of the past week and a half, and a very sleepy woman writing this post, I want to focus on one small but significant breakthrough: red onions.

Red onions aren’t something I eat everyday, nor were they high on the list of foods that I couldn’t eat but incessantly wished for. They are a pleasant treat, a crisp, biting, refreshing addition to a salad or a sandwich. They also triggered reflux when I tried them once last year, after I had reintroduced so many other foods into my diet. Last week, I had dinner on Friday night at a restaurant that makes incredibly scrumptious appetizer salads that come with each meal, salads made from organic vegetables from the farm owned by the people who own the restaurant. I usually take off the red onions. This time, I forgot and ate them. Delicious! But that’s not all: no reflux. The next day I decided to be bold and have some in a sandwich. Equally tasty, still no reflux. Pretty good.

The point of all this is that despite the fact that I’m struggling, and that things are still difficult in many ways, I can see that my body continues to heal and get stronger.

Shifting Focus

I spent much of January through March taking a writing class. My goal is to finish a young adult novel I started before I started using the coil machine. One of the reasons I stopped working on it four years ago was because I couldn’t handle both blogging and writing anything else. There were limitations on my arms and limitations on my concentration.

Much has progressed since then. On most days, I can use my arms at the computer for up to two hours and still use them for other things (cooking, knitting, handwriting something, etc.) on the same day. On most days, I can go for a walk and still do other things (go up and down the stairs, use the computer, etc.) on the same day. On most days, I can do a few different things without my internal battery being so overdrawn that I need to spend the following day in bed.

Some of the change has been getting Babesia into remission. Some of it has been reducing the symptoms and physical stress of the other two infections, Lyme and Bartonella. Some of it comes from increased strength and stamina from occasionally pushing my limits and giving myself recovery time.

So when I came back from my recent trip to see my family on the East Coast, I had lots of things I wanted to do. While I was with them, I was focused on the tasks at hand, overdrawing my reserve energy and wearing myself out. After recovering a little, I’ve wanted to do so much: coiling aggressively for Bartonella, starting exercise again, working on the novel, blogging regularly, cooking, knitting, being social with my friends, getting enough rest and doing basic housekeeping (maybe even cleaning out a cabinet or a closet).

I’m sad to say that the list is way too much for what I can actually handle. In particular, exercise still wears me out so much that I find myself needing to rest and unable to do much else. Cooking and cleaning up after myself becomes impossible. I find I’m too tired to write. Basically, I end up knitting and coiling and resting.

In comparison, when I was taking the writing class, I felt bad that I wasn’t getting out to go for walks frequently enough. But I was able to do more of everything else, and I had a little energy left to wish I could do more.

Last spring and summer I also struggled with exercise. I live in a place where it is so beautiful outside. I want to go out and run free every day. But I can’t. If I want to go out every day, either I have to limit my “exercise” to walking, or I need to find a way to not overdo the other types of exercise I like. I didn’t do that this time. So here are my adventures.

Yoga Breathing

Two Fridays ago, April 3, when I wrote my last post, I went to a yoga class that turned out to be cancelled. However, the room at the gym was available, so I decided to do my own routine for about 45 minutes.

Of course, I overdid the workout. I started out slowly, warming up, then continued with a series of poses that worked the various parts of my body that give me trouble: my shoulders, my hips, my ankles, my balance. I worked my core muscles. I stretched and toned. I felt tired, as expected, afterwards. I desperately wanted to go for a long walk because the weather was beautiful. But I dutifully napped and blogged when I got home.

The next day everything was sore. I woke up lots of muscles that have been out of use with walking as my primary form of exercise. I was cranky from being so sore. But it seemed worth it.

The following two days, I was fine. I went for my normal walks. Even though I had pushed my body, a nap that day followed by one day of rest was good enough.

Water Baby

On Tuesday, April 7, I went for a swim at the gym. It was my first time swimming since I floated around in Hawaii during my honeymoon. It was my first time swimming laps in over a decade. It was fabulous.

I was on the swim team in junior high school. I was never the fastest. I don’t think I ever did better than 3rd place at a meet the entire 3 years I was on the team. But I love the feel of swimming laps. I love going back and forth and listening to my breathing and feeling the water glide past my abdomen while my arms and legs propel me forward. Back in junior high, I swam on weekends. I loved the big pasta dinners my mother served before and after practice and meets. I loved the annual “swim-a-thon” where we asked people to sponsor us a nickle or a dime per lap to pay for the team’s equipment. Back then I could swim 60 to 70 laps in the olympic-sized pool and collect a few bucks from a sheet full of neighbors and relatives the following week.

When I got in and swam my first length of the 1/2 olympic-sized pool at the gym last week, I was transported back in time. I could hear my coach commenting on my strokes. I could hear my breathing that day like an echo of the hours swimming almost three decades ago. I was energized. I didn’t feel the debilitated, exhausted body I’m often trapped in.

So I swam. And swam. And swam.

I swam for way too many laps (16 to be precise), when I should have stopped after completing half of what I did. When I got out, my leg muscles felts like jello. I was in a zombie trance the rest of the night. I was lying down for the night by 8:30 pm.

When I woke up the next morning, a familiar thought popped into my head: enforced rest. This is an idea listed in Dr. Burrascano’s monograph, Advanced Topics in Lyme Disease. It says that exercise should be done every other day while a person is healing from Lyme, with a rest day in between, even if the person wants to do things other than rest. I briefly had the idea that I should make myself rest after such a big swim.

I discovered that I didn’t have to “make myself rest” as soon as I tried to move one of my arms. My muscles were so tired that I felt like there was a sofabed on top of each arm. They felt heavy and impossible to move. My legs were almost as bad. It took me an hour to get out of bed. I ate and showered and coiled and went back to sleep for a nap. I ate and forced myself to get vertical for an appointment with my acupuncturist. When I got home, I ate again and got horizontal until it was time to climb the stairs and coil and get in bed. I was a wreck.

I think the acupuncture gave me temporary pep. I was okay the next morning: no pain, no heaviness in my limbs. I went for my regular walk. But underneath, I think I hadn’t really recovered. I had no attention for writing my book, blogging, cooking or doing much of anything.

Yoga Friends

Friday rolled around again. I was determined to try this yoga class, since I’m a third of the way into my one-month gym membership. I ended up arriving late and hustling to the yoga room.

It was empty.


I went to the front desk to inquire, thinking I might have gone to the wrong place since it’s my first time attending the class. Nope. Class cancelled. But since there wasn’t a sign in the front alerting gym members, the manager sent a boot camp instructor to lead me through some stretches. Then another member of the class showed up.

I didn’t really want to do boot camp stretches. I wanted to do yoga. I told them to go ahead while I did my own thing on the side. Somehow it got all turned around and I led the three of us through my series of yoga poses for the next 45 minutes. It was strange to lead. I couldn’t call out all the things a yoga teacher would to help people with the poses, I just did my best to give them a clue while doing my practice.

The good thing is that I found out that Friday is usually a restorative yoga class: lots of poses to release tension in the various muscles, tendons and joints. This might be exactly what I need, if the teacher shows up this week.

The bad thing is that I’ve been tired for three days.  Saturday and Sunday, I did moderate (for me) activity: walking around at the farmers’ market and doing some other errands on Saturday, attending a baby shower on Sunday. But I was tired by 6pm both days. I just felt worn out.

Today (Monday), I feel like all this exercise was too much. I feel overcome by fatigue. I spent a lot of the afternoon napping.


I went for a special request session with my acupuncturist last Wednesday. There is a treatment which involves putting needles in all the back shu points to reset all the meridians at once. In New York, my acupuncturist would do this periodically when my body got very out of whack. I asked my current acupuncturist to try it on me.

The initial effects were usually subtle, with some light-headedness and a mild headache. Then the next day, I’ve often felt many of my symptoms get less intense, with the results lasting for up to a week. When the symptoms came back, they often seemed to be in a different configuration.

This time, I had the woozy feeling and a mild headache. The main difference was that I wasn’t so tired the next day. My nerve pain calmed down a lot until Sunday. That isn’t very long, so I wonder if something else is going on.

The other request I had was to complete the had treatment she started on me at the clinic a month ago. I had pain in all my fingers. The acupuncturist put a needle in the space between my left index and middle fingers. My index finger felt better. It has felt different than all of my other fingers for an entire month, specifically feeling less painful.

I stopped her after one needle the first time because it was so painful that I wanted to shout. I had to ask her to take it out. I didn’t want to scare the other patients, and frankly, I wanted to know if the initial intense pain would pay off enough to make it worth suffering through it for the other fingers. A month later I had my answer and was in a private treatment space.

She put needles between all my fingers and by my thumbs as well. Only the left hand hurt. By the time the treatment was over, the pain in my fingers, pain that I’ve been feeling for months, was gone. I’m almost completely certain that it was nerve pain. And I hope it was, because as of Sunday, I have pain in my hands again, along with slightly swollen knuckles and lots of popping in the joints.

Good treatment. Poor timing.


For the past few days I’ve been feeling more symptomatic. When I put the symptoms together, they don’t form a picture with a clear source. It could be several different things contributing to me feeling bad. Or it could be one thing that is provoking me. I’m not sure.

First we’ll get a look at the symptoms. I’ve had nerve pain in my upper arms before the acupuncture treatment and returning a few days later, today the pain now extends to both hands. I’ve had tingling in my arms in the mornings and when I wake up at night, though that is diminishing. I’ve had dull aches in the muscles in my arms and legs, accompanied by a feeling of heaviness. As I mentioned above, I’ve been more tired than usual. At night, I had a night heat two nights ago and last night a mild sweat. I sleep a lot, but lightly, waking up two or three times during the night. I’ve been having nightmares, mostly toward the morning. My joints are popping and cracking, mostly in my shoulders and hands, and today also my hips and ankles. I’ve had intermittent headaches, mostly in the afternoon and evening, and occasional light sensitivity during the day. I’ve got a lot of floaters in my eyes; for the past week I see them so clearly that when I look at a light colored wall, they look like insects until I try to focus on them. When I look at other things, a blurry spot appears near each big floater. My skin and joints have been more inflamed, with acne on my face and back and butt, and my knuckles somewhat enlarged. (My wedding ring can get over my knuckle but hurts on the soft tissue when my hands are swollen. But it can’t get over my knuckle when my knuckle is swollen.)

Since I last wrote, I had nerve pain in my hips and going down the outside of my legs. But that has come and gone.

One last symptom, one I always forget to mention, and that leaves me for months at a time, is a hair follicle on one of my right eyelashes, that produces a hard, white secretion. I don’t know which infection it comes from, though these days, I suspect Babesia. It’s been gone for several months and reappeared in a milder form on Sunday morning.

Possible causes:

  • Too much exercise – I drain my reserves and my immune system is slightly suppressed allowing everything to get out of whack, and possibly triggering the chronic infections.
  • Aggressive Bartonella Coiling – I’ve been focusing very strongly on my central nervous system, which usually generates fatigue, nerve problems, floaters, light night sweats, night mares, and can mess up my menstrual cycle.
  • Impending start to next Menstrual Cycle – I have had only fleeting twinges of cramps, so it might be late. However, just prior to and up to a few days after my period, I often have a big flare of multiple symptoms of Lyme and Bartonella infections, and some months I get acne.
  • Babesia Flare Early Warning – Two things made me think of Babesia, the first of which was the day after swimming when could barely move and needed to sleep. One day of fatigue does not equal Babesia, but it happened again today. Having a light night sweat is sometimes an early warning sign, but can only be interpreted by several subsequent nights of increasing sweats. Then there is this eyelash secretion, which comes and goes, but which has been gone since at least November when I hit a turning point against Babesia. Still, I wasn’t paying attention to the eye thing closely enough in the past to be sure it has anything to do with Babesia.

Where do I go with all these symptoms? There’s no clear answer. I’m going to rest for a few days, at least until my next menstrual cycle starts. If that clears things up, then I’ll know what it was. I suspect I’ll have to go easier on the exercise, no matter what. Then I’ll also see if things keep changing as I move through the Bartonella coiling. But if the lie-down-all-day fatigue persists, I’ll have to try coiling for Babesia again.


Categories: healing process

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