Saturday, July 27, 2013


The latest installment in the "getting off" series.

More pills than I'd like to be taking, but less than I was taking before.

Four months ago, I stopped taking my antibiotics, my Lyme-killing herbs, my Ayurvedic liver support pills, my twice-daily injections of the blood thinner heparin, and the three doses of Cholestyramine, which was killing my appetite and making me constipated. I cut out iodine and B12 tablets and drastically reduced Vitamin C, multivitamins, and enzymes. I put away out other pills and powders whose names I can't remember now. I'd been taking each of these things because they each helped with specific, hellish symptoms of Lyme. Each pill or injection was warding off some aspect of misery. All together, however, they added up to so much medication that it was difficult to leave the house, eat meals at the time others were eating, or have a phone conversation without interrupting it to swallow something.

The only way to know if I could have a normal life (or a more normal life) was to plain-old stop taking stuff. But stopping taking stuff when that stuff has saved you from being too sick to walk or read or watch TV--well, it's frightening.

"Congratulations!" my doctor said. "This a big step for you to take."

"This is courageous!" said my naturopath.

"It's really, really brave," my mom said. (I was staying with my parents while I went through these medical adjustments.)

I was ready for the Powers That Be to reward me for my bravery. I was thinking all this medicine for so many years might have even cured me of Lyme. I might just not need it at all. I'd have to wait and see.

For about a month, I was OK.

Then I had trouble sleeping. I got back on the herbal protocol for Lyme. I felt stiff and fatigued getting out of bed in the morning. I ratcheted up my Vitamin C. I was better, and then worse again. I added a third herb for Lyme.... Still, I resisted letting things get too fancy. No injections, no appetite-killing drugs, no enemas.

I landed at more or less an equilibrium of feeling more or less how I had while taking a zillion medications a day, only now I was taking six or seven.

Then a tick bit me--which was testimony to how reality, unfortunately, is  not a double-blind scientific study. I decided to take antibiotics for the tick bite, and things got zooey for a few weeks. When those weeks were over, I went more or less back to where I'd been before the tick bite.

That is to say, in the ballpark of more or less; approximately more or less. I was in a different universe from being depressed and fatigued from antibiotics. I wasn't, however, in the universe of feeling ready to move back to Seattle and into a new house as a newly single person. I had my plane ticket back to Seattle, I had a house my tenants had just vacated waiting for me. I'd scheduled movers to take my things from my ex boyfriend's apartment, and I'd told all my friends I was coming back.

And I was scared, because I simply did not have energy for this looming situation.

Thirty-six hours before leaving for Seattle, something clicked. Fatigue, I thought. Thick blood. So I added in one more supplement, lumbrokinase, which is an enzyme that thins the blood. My energy shot back up immediately.

So now I'm back on the Boluoke brand of lumbrokinase. It's not heparin, which I took for years and requires an injection and left bruises all over my body. I can buy Boluoke on Amazon, meaning it's easy to keep in stock.

The reality is my experiment of getting off as many medications as possible is not going as hoped. The reality is being brave doesn't mean you get what you think you should get.

Given reality, I'm glad to be back on Boluoke lumbrokinase. It hasn't cured me of every last Lyme symptom, but I'm in Seattle now and handling the chaos of moving and setting up house with more energy and ease than I had imagined was possible.

Sunday, July 7, 2013


Igenex Labs called on Friday to say the tick that bit me three weeks ago was negative for diseases. Or at least, negative for all the diseases Igenex tests for, to the best of its ability. The last three weeks sent me on a weird psychological journey, and it took more than twenty-four hours for me to start to feel I could trust these results.
Science is at best shaky, at worst utterly unreliable, or so my experience has gone over the last fifteen years. Not mention how for these last three weeks the universe seemed like one gargantuan tar baby. And now, maybe not. At any rate, I stopped my antibiotics. I am packing to return to Seattle, where there are fewer ticks, and less Lyme disease. And I'm feeling some physical relief to be off pharmaceuticals-- I can now carry on a conversation before 12 noon, and when I dance my brain and legs are able to communicate with each other. 
Nevertheless, any illusion I once had of safety has been stripped away. Where does that leave me? Be happy when I get the chance. Last night, I stayed out tangoing a couple hours longer than I'd planned. I'll have to just declare that something to dance about.

Thursday, July 4, 2013


(I wish I knew who did this illustration, so I could give credit!)

It has been three weeks since I found a tick had bitten me, apparently while or right after I was swing dancing in urban Washington DC. The next day I FedExed the tick to Igenex, Lyme medical labs extraordinaire, to be tested for Lyme and other diseases. I started taking antibiotics immediately, and thought I'd hear back from Igenex in one week's time.

But as of this moment, there's still no word. The receptionists at Igenex (I've now called several times) have told me it may take up to three weeks, and taking into consideration that today is July 4th, Monday July 8th is the most likely day I'll get my results.

Meanwhile, the doxycycline and biaxin Dr. Marty Ross prescribed have put me right back into the dark heart of Lyme disease-- fatigue, stiffness, psychological misery, and brain fog. Samsara, Sartre, Sisyphus, the works. All this could be die-off from the Lyme germ that took up residence in my body some fourteen years ago. Or it could be the result of killing off the new infection. Without the lab results, there's no way to know.

Four weeks on antibiotics is the most conservative approach to prevention after a tick bite. Much as I'd like to be in a happier place, I decided yesterday in my appointment with Dr. Ross that I'd keep taking the antibiotics, given the lack of information. Even if the Igenex results come back negative, I'll have no regrets. This isn't the time to take chances.