Sunday, May 8, 2011


I slept 7.5 hours last night, and am about to go back to sleep again now that I've had my heparin injection, breakfast, antibiotics and supplements. Since my appointment with Dr. Ross I've made some improvements in my sleep. Here's what I'm doing:

1. Increasing quercetin. I've only needed three caps a day until now, but I doubled it because of Dr. Ross's theory about inflammation.

2. Starting Sacro-B. This is the "good yeast" that your gut needs, and it's on Dr. Ross's list of basic steps to reduce gut inflammation.

3. Coffee enema! (More on this in a future post.)

4. Getting to bed early

5. Meditating, staying calm, giving myself all the time I need to fall asleep-- even if it takes an hour of meditation in the morning just to fall asleep again for half an hour. It's worth it.
Yesterday I rode my bike a couple miles over to Dandelion Botanical Company to attend a support group called "Dudes and Chicks with Ticks". I've only gone once to a support group and it was a disaster. Way too much complaining, not enough constructive information sharing.

But the meeting yesterday was called "Lyme Success Stories" and we were told to bring positive attitudes, so how could I not go? We all sat around a table in the upstairs conference room and shared what had worked for us in our treatment, and it was really great to meet others with Lyme who had a positive attitude.

At the end of the meeting, two women who were in remission spoke about how they had gotten there. (Remission, in this case, means they have finished their Lyme antibiotics and are feeling completely recovered, but they still take care of themselves with naturopathy and diet.)

Some comments these two women made that stuck with me:

Anna: "Being stubborn is good. You need to be stubborn to beat Lyme."

Malia: "It's not a few little things, it's a hundred little things you need to do to get through this treatment. But I kicked Lyme's ass.... And you all know that the phone gets very heavy when you have Lyme, but we need to learn how to pick it up ask for help."

It changed my thinking to learn Malia was on antibiotics for five years, and now she's in remission. As I approach the four year mark of antibiotics, and even with all the progress I've made, I've had some moments in the past month when I've thought "Will I be on antibiotics for the rest of my life? What if I just stop making progress and I'm stuck in this half-better, half-sick state, and I never get a full night's sleep again?"

Hearing that it took someone five years changed that. So what if I'm not 100% yet? It doesn't mean I won't get there if I keep trying.

Thursday, May 5, 2011


As I mentioned in my last post, times have been a little tough here at Lyme Story. (To wit, I am writing this post on six hours of sleep, which, more often than not, is all the sleep I get.) After years of antibiotics almost all my energy has returned, but my other big Lyme symptom, insomnia, has not improved. Over the past four years I've gone through a cycle of insomnia every few weeks-- sometimes it comes on after a couple months' absense, sometimes ten days, sometimes three weeks. I can usually get over it in a few days by adjusting my supplements. Perhaps I need more vitamin C, or to take monolaurin to help with the viral load that accompanies Lyme, or even to increase my antibiotics. Until now, I've always gotten back to solid sleep by making these adjustments.

But starting three months ago the insomnia has been stickier than that. No matter how I change things around, the insomnia comes back after a day or two. So I went to see Dr. Ross yesterday and told him how badly I was doing, not sure if he would have any new ideas. To my relief, he did. He had just attended a conference on the weekend and heard a lecture by Dr. Ritchie Shoemaker.

Shoemaker has an entirely different approach to chronic Lyme and Dr. Ross said he wants to try it on me and his other patients who are stuck in their treatment. (I am ready to admit that right now I'm stuck!) It's not about killing the Lyme bacteria, but about reigning in the other reactions the body has to Lyme disease. To summarize Dr. Ross's explanation:

1.Chronic inflammation: Lyme creates inflammation, and the inflammation creates cytokines, and the cytokines create oxidizing agents, and the oxidizing agents create cytokines, and the cytokines create oxidixing agents....

2. Toxicity: Is the liver strong enough to get toxins out of the body? If not, the toxins can enter the brain, effect the hypothalmus and interfere with sleep.

It turns out I am doing pretty much all the basic first steps toward controll inflammation in the digestive tract, where the biggest problems can be. (I am taking tumeric, Vitamin A 5,000 iu's or more, Vitamin D 1,000 iu's, I am on a gluten-free and anti-yeast diet and of course I take probiotics.) That leaves one more thing to check, which is wether I have a nasal staph infection that could be causing inflammation. I will do that once Dr. Ross's office has the test kits for it. And I got a blood draw yesterday to check if my liver is strong enough to be doing its job. (This test is called HLA-DR typing.)

Meanwhile, Dr. Ross gave me a couple new supplements. If they help, I will report on that. And I decided on my own to increase my quercetin, a supplement that keeps inflammation in check. I've been taking three capsules a day, which up to now has been adequate, but maybe I just need more for whatever reason right now. I will update in the next few weeks on the outcome!

PS: Due to my lack of sleep, I haven't put in many links on this post, but Ritchie Shoemaker can be found online, and there is more info on this blog about the anti-yeast diet.