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Waking the Beast

Thursday, October 10, 2013

I intentionally overdid it over the weekend. I ate everything I wanted to, except for food containing eggs. I paid the price in suffering…but I woke the Lyme and made the Bartonella more active. So I consider it a triumph.

Demanding Resources for Lyme

I was in San Francisco for the weekend. I started out at the protest outside the IDSA. It was more of a rally and educational event because the attendees at the IDSA conference seemed interested in what we were saying. I held a sign for about an hour. Then I crashed on a bench.

The main speakers were clear, intelligent and motivating. I walked away wanting to do more than write about healing from Lyme using this untested technology. I think that as time passes, I will be able to do more. I have ideas and I know how to reach out to activists. Yet, after thinking about it a lot, I realized that if I can use the coil machine to become completely well and infection-free, I will have done something revolutionary. So I continue to plug away at it every day, spending time on the treatment itself as well as plotting out my next steps. I continue to keep records so that whatever I do may be reproduced by others.

There was an open-mic speak-out in addition to the movement leaders and invited guest. I listened to the triumph of others who have fought Lyme themselves or on behalf of their infected family members. I heard stories of people who, like me, went through a period of time unable to walk, who were excited to be able to attend the rally. I heard a lot of courage and persistence. I was inspired.

But I felt too shy to speak in that group. What they were asking for is the basic recognition that they got as well as they have (though most people seemed to still have significant symptoms) with long term antibiotics. They want insurance companies to cover their medication and their doctors to be able to prescribe them without being hounded by insurance companies or state medical boards. They want a sea-change in the way antibiotics are viewed: not as miracles that can cure any infection in two weeks, but as a long term medication for a chronic infection, the way tuberculosis and AIDS infections are treated with their respective drugs. They want research to see which drugs and combinations of drugs work the best and how long they need to be taken. They want reliable tests for the infections so that others don’t have to go through what we all went through to get diagnosed.

I support all of these goals. And I want more. I want a cure. To me, it isn’t enough to take loads of antibiotics forever, though I would have accepted that if it was my best and only option. I want to be well. I happened to find this off-the-map “treatment” that has helped me way more than the antibiotics did… But maybe I stopped the antibiotics before they did all they could do for me. Maybe there was a smarter combination. Maybe. Maybe.

I want revolutionary work funded. I want something better than a coil machine that requires three hours a day every day to make progress against my tick-borne infections. I want something that works faster and takes less time to use. I want the research that will allow people to get fully well, not stuck on low-dose antibiotics indefinitely.

So I listened. I cheered and clapped wholeheartedly. In my imagination, I let myself dream of a time when we, as a species, have a better solution for tick-borne illnesses.

Waking the Beast

As I mentioned in my previous posts, I’m doing my best to convince the dormant Lyme bacteria in my body to wake up and be killed by my coil machine. To recap, my body was able to keep the Lyme flare pretty minimal this autumn, as long as I took lots of supplements and stuck to my rigid diet. When I reduced the supplements, I had more symptoms. These were resolved with two coiling sessions. The herxes were noticeable but not as bad as in previous Lyme seasons.

Then I moved on to food. I’ve been eating every forbidden tasty morsel (except eggs) for about a week and a half. At first it felt so rebellious. Then I started enjoying the food and feeling the changes in my body. In particular, I spent all weekend eating wheat, nightshade vegetables, malvin-containing foods, cows milk dairy and even sugar. It was fabulous. It was also scary.

On Saturday afternoon, a few hours after a peanut butter and jelly sandwich, I got weak and shaky. I stayed that way until part-way through dinner. I don’t think my body can handle the ups and downs of the increased carbohydrate load. (Short term it is unpleasant. But I bet the Lyme bacteria can sense the blood-sugar rollercoaster.) Sunday I had very low energy. I could carry on a conversation as long as I was sitting down. But I could tell that my weekend in SF was draining me and that the food choices were making it worse. I had headaches and toothaches and rib pain and irritated bowels. All weekend I looked pregnant and had a hard time fastening my pants.

Monday morning I woke up ready to take morphine. (I didn’t, but my pain level was higher than its been in over a year.) My arms and legs hurt. My arms and legs tingled from the elbows and knees to the tips of my limbs. My headache and toothache were worse. I had light sensitivity. I had abdominal pain and serious bloating. I was spacy. I was itchy. I was cranky. I had insomnia. I had back pain and rib pain. The rib pain was bad enough to make me worry that I had gall stones. My joints were sore. I had chest congestion and coughing. I didn’t want to move. When I finally did, I discovered some acne on my face. It was a rough morning.

I felt like the Lyme could easily take over. I also worried that maybe this wasn’t directly from the Lyme. Maybe I just permanently have food sensitivities. That would suck.

Then I coiled for Lyme. Most of the symptoms, except the swollen abdomen and irritated bowels, went away or became drastically milder. It was almost shocking to go from really bad to mildly uncomfortable in the course of a few hours. The herx came, with renewed lack of concentration, difficulty regulating my body temperature, and lots of fatigue. That night, I had a night sweat.

The next day I coiled for Bartonella. The symptoms abated even more. The pain in my joints went away. My abdomen stayed big (actually it’s been big all week), and the usual Bartonella-herx constipation came along with renewed kidney pain. I had a second night sweat.

Even as most of the symptoms abated, I had congestion in my trachea and sinuses. It was different from the colds I tend to get as the active Lyme is mostly killed off each season. Instead, it was not infected, just inflamed. It stayed that way till around noon today.

It’s scary to put my body through the huge inflammation cycle. I don’t know if this is a smart way to get to the next level of infection clearance or if I may be doing some other kind of damage. However, since my goal is to be able to eat everything, this seems like a reasonable way to see if I can get there.

Monday through Wednesday, I ate without deviating much from my anti-inflammatory diet. The days dragged a little because my energy was low and my mind was all over the place. I needed quiet time after a very peopled weekend and because my internal batteries were drained by the physical stressors. I didn’t have much of an appetite, possibly because my abdomen was swollen enough to compress my stomach.

Today, Thursday, I had pasta and tomatoes for lunch, despite my reduced appetite. (Dominico’s on the Wharf in Monterey serves the tastiest, most fabulous meals.) I did it to trigger the Lyme before I coil again tomorrow. Already, the pain in my ribs, especially on the right side, has gotten intense and unpleasant. I have a grand headache. My eyes aren’t focusing properly. It’s ugly…and with any luck, the Lyme will keep waking up all night and I’ll kill them off in the morning.

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