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Missing Data

Friday, April 27, 2012

It’s been more than 2 weeks since I last recorded notes on this experiment to cure myself of tick-borne illnesses. The hiatus started simply enough: my hands were really screwed up by the Bartonella treatment. Then my menstrual cycle started and I was horizontal for two days. Once I got up again, I just wanted to go outside, but with not much energy, one excursion knocked me out for the rest of the day…and the next one.

My m.o. for the past few weeks is to do something requiring energy, then be done for the day, maybe pulling myself together again for a light activity later in the day. My mind has been full. This trip to California has given me so much hope about my own future. I can see myself living here, healing, being outside surrounded by the natural environment (walking on the beach or through the path in a nearby slough), beginning a writing career. I’m very at home in northern California.

Over the same time period, I’ve been ramping up my Bartonella treatments so that I’ve finally reached the full coiling protocol. That’s part of why I’m so exhausted, and why the pain is on the move again. I’ve had problems with my hands, which have calmed down to a moderate level (so I can do a small amount of typing or knitting again). I’ve had headaches. I’ve been moody. I’ve had problems concentrating (another big factor in not writing). I’ve had bowel inflammation, which finally calmed down the day before yesterday. Now my waist has reappeared and my abdomen isn’t swollen. What a relief.

For the detox protocol, I’m continuing to load up on antioxidants and drinking kombucha most days. But the bulk of the detox has come from using a dry sauna. I got a gym membership to go to a weekly yoga class (the most cost effective solution for the month I’m in Watsonville). The yoga classes aren’t great. But I’ve gotten my money’s worth by visiting the dry sauna 4 days a week. I go and sweat for 20 minutes, then rinse off and leave. It takes about an hour for my body to cool down, during which time I continue to sweat out the Bartonella and Lyme toxins. (Yup, I’m still coiling for Lyme every week.) I usually feel much better for two hours after the sauna, then I need to rest. I’m not sure I’m drinking quite as much as I should, but I’m doing my best to ingest lots of water and electrolytes.

Moving forward and going back

Today I’m going to my college reunion, 15 years after graduating. It’s an odd experience. I loved my college years. Not many of my closer friends (all of whom I’ve lost touch with) will be there. I’ll have to be able to talk about what my life has been like. I haven’t been working for the past 5 years. In fact, my life was on hold for most of that time while I tried to regain my footing in this world, fighting through Lyme, the other infections, and all the problems they caused. It’s only over the past several months that I’ve begun a relationship with my partner, finally having gotten well enough to do something in addition to treating Lyme and sitting still to let my body heal itself.

I thought I would be at the last reunion 5 years ago. I kept hoping, all the way up to a few weeks before, that whatever the mystery illness was would resolve as abruptly as it started. Instead, I spent reunion weekend holed up in my apartment with the lights out, shivering under the covers, occasionally attempting to stand up to go to the bathroom.

Five years later, I’m in much better condition. I can walk. I can do things if I rest in between. I feel social again. Yet the anniversary has put my experience into sharp focus. I’ve managed to do a few things over the past 5 years. But I’m not the energetic, efficient, ambitious person I was in college, or even five and a half years ago before I got sick. I’m on a different path now and still coming to terms with it.

Missing Data

Having not written for the past two weeks means that I can’t quite parse out which symptoms come after which events. I remember having a big night sweat right before my menstrual cycle. I’ve had a few since then. I’ve been having more fatigue. Both symptoms could be from the Lyme coiling or the Bartonella coiling or, well, it’s about time for the Babesia relapse. (The Babesia relapse was predicted to be about 3-4 months after the end of treating it the first time, which was in mid-January.)

I have a hard time keeping track when I don’t write it down. It’s hard to have a perspective on how bad the symptoms are from day to day, and when it’s from the treatments or the detoxing or the food I ate or recovering from a day when I overdid my activities. If anyone reading this wants advice, I’d say to keep a symptoms and treatment journal, otherwise it’s too easy to get confused or misremember what worked and what made things worse.

These next few days, I won’t be coiling, I’ll just be enjoying the time with old friends and maybe some new ones. Then I hope to slow down my life a little, reprioritize, and get back to recording this journey.

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