When I went on my recent trip to the East Coast, I brought my tick-borne infections with me. The picture of what it’s like to have Lyme Disease et al. at this point in my healing process is complicated. In some ways, I’m more able-bodied than I thought I’d ever be again. In other ways, I find I can push my limitations, but I have to pay up later for going beyond my limits. There are simple things, like getting enough sleep, that I find difficult to do when I’m away from home.
This post is about my follies and foibles and their effects on my body, as well as the experiment I did with Bartonella coiling before I left.
Bartonella Coiling Trial Run
The weekend before I left for Virginia, I talked myself into trying to increase the time I’m coiling my central nervous system and the areas where it meet my peripheral nervous system, while excluding the rest of my body.
It felt, still feels, like a risky venture. What if I miss some important area where Bartonella flourishes? But I bring myself back to the reality that most of my symptoms are neurological in nature, either from CNS infection or radiculopathy. (Radiculopathy is when the branch of a nerve as it exits the spine has a problem, as opposed to peripheral neuropathy where the damaged nerve is in a limb.) So the key places to coil are my spine, my head, and since it has been a lucrative place to coil in the past, my shoulder knobs (where I can get the branch nerves coming out of my cervical spine).
Bartonella CNS Protocol
(Total of 90 minutes per day)
Morning and Evening
- Head: each side, top, back – 5 minutes per
- Spine: upper (with the edge of the coil on the back of my head), middle, lower – 5 minutes per
- Each shoulder knob – 5 minutes per
The result of this coiling routine after one day (Saturday) was a major headache in the evening, which repeated itself the second day. In addition, I had neurological pain in my hands (like gloves of pain) and the right side of my body had mildly painful sensations from top to bottom.
Most of this cleared up by late in the day on Monday (with a little extra detox in the form of dandelion root tea). I was okay on the plane on Tuesday, if very tired when I got to Virginia. It was goodbye to the coil machine for almost two weeks.
Tuesday, my travel day, was also the last dose of co-enzyme Q-10 that I had on hand. I figured I wanted to stop taking it anyway, so I didn’t buy more to bring on the trip. Even with the strange heart problems that had come during February and more or less gone during March, I didn’t think it was necessary to continue it. I was only taking 60mg at the time, and I didn’t think it made that much of a difference.
What I forgot and had to relearn, is that anytime I stop an antioxidant, I get a Lyme flare. To make matters worse, I also get a Bartonella flare, which I think was compounded by the fact that I’d been coiling for it pretty aggressively, and stirring up a storm that wasn’t about to fade away quietly.
The day after my flight, I started having heart palpitations and mild chest pain. I had a few episodes of low blood pressure and feeling woozy. All of these things were temporary but still scary. The episodes continued over the next few days.
The second day after I arrived, I started having joint aches and popping, needing naps more than usual, needing more sleep at night. My sleep had the quality of someone on narcotics, making me feel groggy when I woke up. My hands were swollen when I woke up in the morning, which I knew because my wedding ring was too small. Then by about lunch time, the swelling went down, and I could transfer my ring from my pinky to my ring finger. All this continued for several days.
The worst of it was one night, I was on the phone (two earbuds) and my right ear started experiencing popping noises before the sound became dulled and garbled. It was a strange experience. Later on that night, I had ear pain which continued on and off, though it seemed worse when my jaw was popping than after the sound incident.
The crazy thing was that I was still functional most of the day. I could play with the children and do things with my sister and her husband. I was pretty involved with the children. I did a little to help out my sister in preparation for my nephew’s birthday party. The way it felt was that I was draining my reserves each day, not quite refilling the reserves with sleep at night or during naps. I could handle the week there, but I couldn’t handle an extended time like this.
I finally went to the store and purchased some co-enzyme Q-10. Enough was enough. I still had time with my sister’s family and a trip to see my parents before I returned home to my coil machine.
The heart symptoms lessened the day I took the first dose of co-enzyme Q-10 and were gone the next day after the second dose. After the third dose, the joint pain and popping were more or less gone. Then there was only one day left before I moved on.
On Tuesday (3/24), a week after I left California, I boarded an Amtrak train to New York. The ride itself was relaxing. I finally had the wherewithal to work on a sweater for my nephew, one that I was planning to finish while I was at his house and give to him. I enjoyed listening to the podcast, Invisibilia, while I was on my journey.
A woman with mobility limitations sat next to me. She seemed surprised to find that I was sitting there, as she had changed her seat to get away from someone while I was in the bathroom. I had left my knitting bag on my seat to make clear the seat was taken. In any case, I startled her.
We didn’t talk very much. But just through observing her movements and her difficulties, I was taken back to my most recent previous trip on Amtrak in 2007. I couldn’t walk very well, though it was before I lost the ability to move my legs enough to take a step. I had a hard time balancing and I had strange neurological pains and other sensations in my legs. I couldn’t put my luggage overhead. It was when I had stopped working but still thought I might go back to work in a few weeks or at most a month or two. I was in denial that my symptoms were progressing rather than going away. So I sat with this woman and wondered how it was even possible that I could take the train on my own eight years later.
Amtrak was great. The NYC Subway was another matter altogether.
The subway has been a difficult setting for me. When I very first got sick in 2007, I was still taking the subway and I had episodes on it. My legs would get week. My blood pressure would drop. My heart would race…or slow down too much.
So I stopped taking the subway. Then I stopped walking and doing basically everything else in my life as well.
Fast forward to 2010. I was getting doses of intravenous Rocephin in my doctor’s office in Manhattan, while I lived in Queens. The trip was expensive, between tolls and parking, or taking a cab. One day, well into the treatment, I decided I would take the subway to the doctor’s office. It was ugly. I felt weak and lightheaded, my heart raced and pounded (like a hound on the hunt). When I got off at my stop, I had to sit for a few minutes in the station before I made the arduous climb up the stairs. I didn’t feel any relief until I was above ground again. I wasn’t sure I would make it to the doctor’s office, two blocks away.
I asked around among the other patients who were getting IV antibiotics and other supplements. One person asked if it was a panic attack. I didn’t feel anxious until after my legs gave way. Another person said he hadn’t been on the subway since he got Lyme and a few other tick-borne infections. He thought it was the mold and dirt and various electromagnetic frequencies on the subway. I wasn’t sure. I’ve never investigated, but I felt the effects for myself.
Moving along to March 24, 2015, I’d had such an uneventful trip on Amtrak that I decided to give the E train a try. I wouldn’t have to change trains, just get on at Penn Station and get off in Jackson Heights.
The problems began when I was on the platform. As soon as a train pulled into the station on tracks bordering a different platform, I started to feel funny. It was a generalized sensation that something was wrong, that my body was on high alert. Mentally I was still relaxed: I’d taken the subway for years without incident before I got sick, plus I had a simple plan.
I walked towards the front of the train, knowing that it would be crowded at the back in a few stations and that the center cars are always packed. When I got into the train after it pulled in at my platform, there were no seats, but I wasn’t worried. Then things started to get worse. I started to have tachycardia. I even measured my heart rate at 100-120 beats per minute. I got light-headed and started to feel weak. I couldn’t think straight and I knew I looked pretty normal, so I couldn’t figure out to ask someone to let me have a seat. The right side of my body started having the familiar strange sensation. My left leg began to tingle. These kinds of symptoms make me feel like I’m crazy. The ride seemed to take forever.
In Jackson Heights, I used the elevators (it takes three to get from the platform to street level) and stood for a few minutes outside. I breathed the cold, dirty New York air under the elevated train tracks. I was okay to walk three long blocks home.
In my parents’ apartment, I sat for a few minutes. With rest and food, I was able to go visit my dad in a nearby rehab center after dinner.
The thing was that I felt like I was having a big Bartonella flare with all the neurological symptoms coming on during the train and not really going away. It also felt like a Lyme flare as I slept for a very long time that night.
Home Sweet Home
I moved from Connecticut back to my hometown of Jackson Heights in Queens, NY in 2005. At the time, I thought I would never leave. My parents and extended family live there or within an hour’s drive. By the time I’d been sick for three years, I was ready to leave forever. I couldn’t put my finger on it exactly, but the city wasn’t meeting my physical needs (beyond food and shelter), and it seemed to make my symptoms worse. At that point, I didn’t think I’d become a regular subway rider again, which meant a lot of driving in NYC traffic. What a nightmare. I dreamed of moving to the Adriatic Coast of Italy, where my mother’s family emigrated from.
After living in coastal California for two and a half years, I don’t like going back to NYC anymore. I love sunlight and clean air and regular access to the natural environment. I feel crowded in by all the people, oblivious to what happens around them. In the subway, as I was swaying and putting my head down, trying to see if I could sit on my wheeled suitcase (not a good plan), everyone around me was submerged in their phones. People watched videos, read text, listened to music, and played games. No one looked up until it was their stop. It was eerie. When I last used the subway regularly, in 2006, people still read books, people watched, talked to their friends, dozed, and did other random activities. It felt like a different place than the one I had known.
So I wasn’t surprised that the flare that started on the train continued for the four days I spent in Jackson Heights. My right side continued to have more and more sensation verging on mild pain; it was noticeable precisely because I didn’t have the sensation on the left side of my body. My hands were swollen every morning, even more than in Virginia. I had Lyme pain in my rib bones. I had increased abdominal swelling. I had Bartonella crunching and pain in my left shoulder and jaw joint. I had tingling in my left leg and in spots near my thoracic spine on both sides. I was more and more tired and slept longer every day. I felt bad. But I still ran around with my mother doing what needed to be done while my father was in the rehab center and visited Dad twice a day.
My batteries continued to wind down.
I had the absurd notion that I would return to California and rest for a day then go back to my life. This is absurd because after previous trips I’ve needed between a week and a month to recover from traveling. Now, almost a week after my return, I can see the folly of my thinking.
When I got back, my nerves were on high alert. Not my emotions, though they’ve been up and down, but my nervous system. I was having extreme sensitivity to touch and planes of pain across large swaths of my arms and legs. I haven’t had to deal with that for quite a while. I’ve had lots of regular nerve pain, too. I’ve continued to have heart issues. I’ve had headaches. When I tried typing the first half of this week (March 30-April 1) my fingers generated a large number of typos. (Today this isn’t happening.) Then I got PMS symptoms (cramps and sore breasts) TWO WEEKS out from my next cycle. This is crazy.
I started coiling with Lyme on Monday and again today (Friday). The herx on Monday started within a few hours. I became so sleepy I could barely talk or move. I had to lie down and sleep for three hours.
In the interim, I’ve started up with Bartonella again. I did a full body coil, and two days of the CNS coiling protocol I wrote about above. They gave me big headaches each night, plus increased nerve pain, tingling in my arms and dysautonomia symptoms.
I went for acupuncture on Wednesday to see if my nervous system might calm down a bit. It has. But I still feel more pain and more physical sensitivities than I did before I left. I’m going again next Wednesday to see if there’s anything more we can do.
I’ve discontinued the co-enzyme Q-10 again. I figured that while the symptoms are raging, I might as well coil without suppressing the infections.
All my plans for the week have been reduced as I move about in slow motion. But I’m getting on track, a little at a time.
I feel like I lost ground on this trip. I had more returned symptoms than I expected. I’ve now cancelled some of my travel plans for the next few months because I prefer not to see my progress slip sliding away on me.
Categories: healing process