My best guess is that I got infected with Lyme Disease (and Babesia and maybe Bartonella) in spring 2001. It was a run in the local park in New Haven followed by a flu that no one else came down with. Then over the next several months, joint problems in my wrists, neurological problems in my arms and neck, a heart problem and gynecological problems.
I think my initial exposure to Bartonella was during my childhood. I suffered from mysterious problems, ranging from aches all over my body and severe bouts of constipation to inflammation in my lower spine and a teenage bout of insomnia and depression that lasted 5 months.
However, during all these years of my life, all the way to 2007, Lyme & Bartonella were not a governing force in my life. They had an impact despite my lack of awareness of the infections. The physical and psychiatric problems limited what I was able to do in school, at work, in my social life, in my family life, in my personal time. But they didn’t stop me from pursuing my dreams and goals. Rather they slowed me down and pulled at my attention.
Then in 2007, the Lyme-life began. At that point, my daily life, my plans, dreams, goals and desires, have been related to this debilitating illness.
The first year was prior to diagnosis. 2007 was all about tests, sleep, weakness, headaches, and a diminishing ability to walk. It was punctuated by “empirical” treatments for diarrhea that never went away and a course of Chinese medicine that made me think I was being poisoned (because I hadn’t yet heard of the Herxheimer reaction). I discovered my egg allergy through a pancake brunch followed by an escalating reaction that put me in bed within a few hours and kept me there for weeks.
It was a year of mystery and misdiagnosis. Several competent doctors, from neurologists to infectious disease specialists, told me there was clearly something wrong but they couldn’t tell me what it was. An immunologist told me I had chronic fatigue syndrome, but when I looked it up, there was nothing about leg paralysis. My acupuncturist got me into good enough shape that I could spend time on the computer and eventually find a doctor with training in environmental medicine. Through his tests, which were different from many of the standard ones, I found out I had Lyme Disease and probable cases of Bartonella and Babesia.
My diagnosis was the overarching theme of 2008. I started antibiotics and got less scared of herxes. I tackled the chronic diarrhea and abdominal swelling when I got tested for food allergies and came up with a long list of foods to avoid.
I finally accepted that I wasn’t going back to work any time soon, giving up the illusion that “six months from now I’ll be back in the swing of things.” I let myself rest and discover all the Start Trek series, watching as I escaped from a reality that I didn’t want to live through.
I read a lot about Lyme that year, books and internet. I researched traditional and alternative ways of trying to cure oneself of the illness. I even ran into some information about coil machines which sounded appealing but too far off the map.
I was tired that year. Tired and in pain. I was able to tell the antibiotics were doing something, but not sure I’d ever walk properly again. Over and over in my mind, I mourned the life I was being forced to leave behind. I still imagined that when I got through this, I would be back to my old job and old life.
During 2009, I hit the wall. I decided to take a six month break from antibiotics because my digestive system was such a wreck. I finally got my diet under control during the months that I was taking anti-Lyme herbal remedies. I had given up the food allergens already, but was reluctant to fully let go of grains. It seemed like too much to ask for, but as the months went by, I had to admit that if I wanted to get through to the end of this illness, I had to find other ways of eating that allowed my body to heal from the daily triggers.
Stopping sugar had been an emotional rollercoaster, making me feel like everything was all wrong. Granted, most things in my life were all wrong, but the sugar withdrawal amplified the feelings that went with it. Now it was time to give up grains, not just wheat and corn but rice as well. I felt like I was starving. I also did lots of reading about diets and realized that given my extremely low blood cholesterol and lipid profile, I was a good candidate for eating as much fats and oils as I wanted. So I began to eat huge quantities of nuts. They never satisfied me the way that a bowl of pasta did in my imagination, but I stopped losing weight.
It was during 2009 that I started to believe that I wasn’t going back to union activism. It was also during 2009 that I started writing my novel.
The highlight of 2009 was planning a party for my dad’s 75th birthday. It gave me something to focus on and a chance to get closer to my father as an adult. It gave me something to feel good about, a ballast against the weeks at a time of being stuck in bed. The party itself was difficult for me physically. I was too tired to really enjoy it by the time it started. But it reminded me that all was not lost. Buried under my illness was the me that I remembered…and during the party, friends and relatives showed me that no matter what condition I was in, they still love me.
Towards the end of 2009, I had a breakthrough in my ability to walk. I did a series of colonics and found myself using the cane less and less. I couldn’t go far, mind you, and I couldn’t handle stairs at all, but I saw that more improvement was possible.
In many ways, 2010 was defined by my desire to move around, to walk, to be in the world again. I took baby steps all year long, walking down the block and back was my first triumph. Later on, I made it to my parents’ apartment, 2 blocks away. Eventually, I could go to the store and back. Each of these events would be my sole activity for the day. But it was freedom.
My mother took my sister and me on a trip to Italy in spring 2010 along with three cousins. I planned the trip, in part because I wanted to make sure I could participate in some of the activities. We brought a wheel chair, which I used daily, because walking was so taxing. I spent every other day in the hotel room reading Sicilian detective novels, trying to recuperate enough to go outside again the following day. We hired a van to see the sights. I ate all sorts of forbidden foods (strictly avoiding eggs, but otherwise loving every bite).
I came home to my apartment and wanted to leave again. I didn’t want to deal with the isolation and bedridden life I’d been living.
That summer I wrote some poems and read them at an open mic. I made new friends. As I could walk more, I wanted to live more.
That autumn, I took intravenous antibiotics for the first time. I spent 4 days a week going to and from the doctor’s office where I sat with other people taking IV medication for Lyme and other conditions. I made more friends. I participated in an education piece about Lyme Disease for a local news station. And I walked better and better. I still had an altered gait, perpetually trying to control my legs and hips. But compared to a year earlier, I felt like I could fly.
2011 was the year of coiling.
In December 2010, as I finished my course of IV antibiotics, which seemed to alleviate many of the neurological symptoms of Lyme, I started having joint problems again. So I switched back to the starting point: doxycycline. My digestive tract went nuts. I knew it was time to make a decision.
I had met a woman in the IV treatment room who used a coil machine. She told me about it and where to get one. I discussed the finances with my mother and decided it was about the cost of another 3 months of IV antibiotics so I might as well try it. Then if nothing happened in 3 months, I could sell it and move on.
By January 2011, I was sitting in my bedroom putting the machine together. I spent the rest of the year trying out the machine, timidly adding time to my sessions, and observing the changes in my body. My digestive tract finally calmed down for a while. My walking continued to improve until by the end of the year, I could walk like an able-bodied person. As I got better, I had the honor of spending time with my sister and her husband as their first child was born.
In addition to coiling, 2011 involved a lot of conflicted emotions. I wasted lots of time trying to imagine what I’ll do for a living once I get past this illness. I fell in love and couldn’t imagine really leaving NYC…until at the end of the year I knew I wanted to see what life might be like with my partner.
I started driving in 2011, during a family emergency when I was the only person available. It was a tough way to start again, but I was strengthened by meeting the challenge.
All the while I was blogging and keeping records, experimenting, observing and progressing. For the first time since 2008, I thought I might actually vanquish Lyme Disease.
Last year was the basis for building a post-Lyme life. Only, I didn’t have to wait until the Lyme was gone to begin building. I traveled to San Francisco then to Santa Cruz to spend time with my partner.
For the first time since 2007, my illness wasn’t the primary focus of my daily existence. Other people who use coil machines said it would happen: long before the illness is wiped out, life starts again.
I ended up moving across the country. I got married. Finally, the big event of the year was mine. In previous years, I celebrated with my parents with a big party and a big trip. I celebrated my sister becoming a mother. 2012 was my turn to shine.
I continued to have all sorts of physical successes and problems. I ceased my Candida treatments in the late spring. I had an ugly Babesia relapse that zapped me of energy for a long period in the fall. I started to whittle away at Bartonella and watched all my childhood digestive problems return with a vengeance.
And yet, I was moving forward, building a relationship with my now-husband and building new dreams for my life.
I don’t know what 2013 will hold. I don’t know if this is the year that I finally recover. I’d like to use some of my new found energy to make friends in my new home, reach out to old friends who live both near and far, and meet other folks who have Lyme Disease. I’d like to write and exercise and enjoy the world around me. I’d like to go on adventures with my husband. I look forward to this next stage of life’s journey.
I coiled a full scan of Babesia yesterday. Still no herxing symptoms. If none at all appear in the next few days, I’ll stop. No need to waste time doing an unnecessary treatment.
Meanwhile, I stayed up late last night, and my chest cold returned with a vengeance. I’m coiling 727Hz to see if it helps my body fight back.
Finally, today I started up Bartonella (832 Hz) again after the travel break. I did 5 minutes on my abdomen and 2 minutes on my chest. About a half hour later, I felt very tired.