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Missing Pieces

Tuesday, April 8, 2014

It’s been a while since I sat down in front of my computer. A lot has happened, mostly good, even the yucky stuff. First, I went to visit my sister’s family for 10 days. It was a fabulous vacation from coiling, especially the part where I got to play with my nephew and niece every day. Before I left, I did a little more Bartonella coiling and discovered that doing my whole body gets a lot bigger reaction than coiling my core. That has changed my approach to my daily coiling sessions. And finally, I came back and got a raging upper respiratory infection. Even though it has been miserable, and I’ve spent lots of time on the couch napping or watching movies, it has been fascinating to see that my body can adequately fend off an ugly infection without any antibiotics or other drugs.

The past few days, as the respiratory infection has been receding, I’ve had food on my mind. I realized that I don’t know how to eat well anymore. I got so used to living on a severely restricted diet, one that I knew how to navigate, and which was full of foods that I could eat without limit (a whole head of broccoli, for example), that I don’t know what to do now that the rest of the foods I’ve been wishing for are no longer off-limits.

Family Time

It’s a typical American story. My parents were the children of immigrants. Along with some of their siblings, they were the first generation to go to college. The leap in education from their parents’ generation to them was 3rd grade to a masters degree. But they made their lives in NYC, just like their parents did. In my generation, my sister and I both have graduate degrees. We’ve lived in a variety of places as a result of our career choices. I’m now living far from NYC because my choice in whom I married. We don’t see each other as much as we saw our extended family when we were growing up.

For me it is a huge treat to spend a week or two with my sister’s family. I know my nephew loves it (because he tells me so and tells me he doesn’t want me to leave and asks why I live far away), and I suspect my niece loves it, too, but she can’t talk yet.

When we had two weeks of Christmas time all together, the kids were delighted. So were the adults. Even with the inconveniences of not enough bedrooms or audio privacy (everyone could hear the baby cry at night), we had a great time together. We are a family that gets along well, enjoys outings and meals together, and can play with trains and toys and whatever the youngest ones are interested in, while still having time and interests to share with the grandparents.

On this trip, we celebrated my nephew’s 3rd birthday. The party was fun and so was the rest of the week. We played together a lot, especially when the kids in his class came down with a stomach bug the week before the party. He stayed home from school and played with me to avoid being sick for his party. My niece got some quality time with me one afternoon, skipping out on school early to play together. We also spent early mornings together to let my sister get some extra sleep (in the 5:30-7 am range).

I came back feeling terribly jealous of my sister–that she figured out how to have a career and to have a family. I don’t suggest that everything is perfect, she still has to make hard choices about her limited time each day, but I was jealous of what she’s been able to accomplish. Mostly, my jealousy stems from being sick for so many years that I had to give up my career and had to postpone having a family, if I’ll get to have children at all.

The jealousy was really an acknowledgement of the cost of chronic Lyme disease. I still want what I wanted when I was 30. But I’m less sure of what my life will be or when I’ll be well enough to pursue my dreams again.

Coiling Lessons

Before I left, I was coiling for Babesia, doing my best to make sure that there was no active infection left, so I could have a good trip…and so that I could redouble my efforts on Bartonella. The last two days before I left, I did a Lyme day and a full-body Bartonella day. I could feel the Lyme herx pretty clearly, but that was expected as I’ve been feeling them more since I took the vaccine doses. The Bartonella herx was more than I expected.

I had been coiling my central nervous system and key organs for Bartonella all along. I thought I’d be covering all the parts that really needed coiling. I suspect that I continued to make progress where I coiled, but that in the rest of my body, the Bartonella infection flourished. After I coiled my whole body, I started having all sorts of neurological static. Sometimes it was the all-too-familiar tingling and numbness in my arms and legs when I wake up in the morning. Sometimes it was feeling oversensitive to stimuli. Some of it was increased low-level headaches or insomnia. I felt twitchy and achy and out of sorts.

When I returned to Watsonville after my trip and started coiling again, these symptoms returned, along with shooting pains in my legs, itchiness, hot sensations in my limbs, disturbing dreams, pain in my calves and feet upon waking, and some sensitivity to light. Then I had the usual bowel troubles (IBS symptoms, tending towards constipation) and acne (on my butt and face).  It was all pretty typical Bartonella herx/flare symptoms.

I’ve rededicated my energies towards getting rid of Bartonella. Every day (except Lyme coiling days) I coil my entire body for Bartonella. I no longer feel any resistance to it, despite dreading Bartonella coiling sessions for over a year. I’ve cut down slightly on my detoxing (going from 3 pills to 2 pills of Renavive daily), just in case the detoxing agents were in any way suppressing the Bartonella (or the Lyme for that matter). I’ve also stopped taking milk thistle. If the herx symptoms start piling up too much, or if I start getting kidney pain again, I’ll go back on these supplements. But for now, I’m seeing the Bartonella symptoms slowly diminish.

The Lyme herxes are the same as before I went on the trip. I feel like I’ve got the Lyme aches and pains and low energy and occasional heart symptoms, as if coiling isn’t helping. I have to remind myself that I didn’t coil for Lyme for two weeks, and I need a few sessions to catch up. The other piece to this is that I may have succeeded in convincing the cysts to start waking up. If they continue to wake up, a bit at a time, I may continue to have relatively low level (not completely incapacitating but somewhat debilitating) symptoms for a while to come.

When I’m fully recovered from the respiratory infection, I have one more vaccine to take. I expect to get more Lyme symptoms again. That would be a welcome, if unpleasant, result, and would keep me going on my use of triggers to get rid of the dormant Lyme cysts in my body.

What’s still missing is what to do about other possible infections. I don’t yet have a plan. I don’t really know what to do when I try coiling for other infections and get herxes. For now, my primary goal remains to get rid of Lyme and Bartonella. Once those are gone, I’ll move on.

Triumphant Cough

In my Lyme support group, one of the members mentioned that a Lyme pediatrician she knew said that a key marker that a child no longer has chronic Lyme is that the child catches a cold, gets sick and gets better without antibiotics. I’m not sure that one cold is sufficient evidence that the chronic infection is gone, but it is evidence that the Lyme infection no longer controls the host immune system.

I caught an upper respiratory infection during my travels. Back before Lyme took over, I used to get pretty serious URIs. In high school, bronchitis lasted several months every winter. I had a respite in college (yay for Los Angeles!). Then my second year in grad school I had walking pneumonia. That wasn’t the best way to spend New Year’s Eve 1999.

Back then, I always turned to antibiotics after two weeks of the URI not going away. After the pneumonia, I stopped taking antibiotics for 7 years. It was interesting to get a cold, have that progress to a cough, then watch it disappear on its own, as long as I rested and drank plenty of fluids. Sometimes I would get help from an acupuncturist. Those times seem long gone.

Now, already 2 weeks into this URI, I haven’t taken antibiotics. I can’t quite seem to shake the sinus infection, but I have gone through the descent into my trachea and bronchii, followed by my body kicking the infection back out. I’ve been more than tired these past two weeks. My baseline, with the chronic infections, tends towards low energy. With an extra infection, I’ve been wiped out. I truly did nothing. I watched movies. I slept. I read a bit. Not much. I even stopped coiling for a few days, when the chest cold was really bad, because I couldn’t take the aches and pains of a herx.

Now I’m coughing a bit, but I see that my immune system is functioning reasonably well again. That’s pretty great.

Blind Eating

While I was extra sick, I had no appetite. None at all. I ate clementines and toast. I drank a lot of tea. I lost 4 lbs in the first week. When I started eating again, I felt pretty nauseated after each meal. But my stomach eventually got past the infection and I’m back to food.

I’ve been thinking a lot about food, even when I wasn’t eating it. I thought about excess calories and excess carbohydrates and all the weight I gained between last June and December. I thought about insulin resistance and its association with chronic stresses, including chronic infections. I thought about the strict anti-inflammatory diet I was on for over 6 years. I thought about all the foods I’ve wanted to eat and have added back into my diet. I thought about the inflammation that has returned with the new foods and the Lyme flares. I thought about what my body might need now that I stopped taking supplements. I thought about the IBS symptoms and what might relieve them. And I thought about what to eat to help detox the Bartonella herxes.

When I was taking antibiotics, low carbohydrate meals and snacks were a necessity to minimize the systemic growth of yeast and other fungi. Now that I’m coiling, I don’t want a totally carb-free, anti-inflammatory diet that artificially keeps the Lyme in cyst form. I want some inflammation and some temporary increases in blood sugar after I eat, in the hopes that this activates the Lyme bacteria. The question is how to balance this goal with my desire to loose some of the weight I gained and not end up being crippled by renewed Lyme symptoms. I think that increased fruit will help with the IBS and that some extra antioxidants will help with the Bartonella symptoms. I just don’t want to take so many that it puts the Lyme back into a dormant state.

Balancing these competing goals seems tricky. I don’t have any firm conclusions yet. But for the next few weeks, I plan to keep a food journal. I’ll be trying some different types of meals. I’ll note my cravings and anything that changes in my digestive tract.

For now, I’m planning on eating more fruits, and continuing to eat a lot of vegetables. I’ll try more beans and lentils. I’ll keep eating grains and nuts and soy. I’ll see how things go.

Maybe I’ll be able to come up with a good coiling diet, one that responds to my needs as I get towards the end of coiling (or what I hope is the final stretch), in the way that the more restricted diet allowed me to begin the healing process when I was taking antibiotics.

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