It’s Lyme.

Here is the letter I sent out to my family earlier this week:


My dear family,As you probably already know, I went to San Francisco a week and a half ago to see a doctor that specializes in Lyme Disease (known more specifically as Lyme Borelliosis).

First, I want to send out a big thank you to Sarah and Gillian who were so kind to me while I was there. I had the flu the entire four days (at least I stopped barfing the day before I left). When I was too sick to visit them on Friday or Saturday, they drove all the way downtown to deliver supplies and a fabulous Chinese chicken soup, not to mention TLC and a pink bear I am calling Percy. They also had me over to their very cute home the next day to watch the Superbowl with them, which was a blast in spite of my nausea. You both made the trip as lovely as it could be – thank you.

Second, after a complete physical and history, my LLMD (Lyme-literate Medical Doctor) diagnosed me with Lyme Borelliosis and at least one co-infection — Bartonella (co-infections are other tick born illnesses that very common with Lyme). She also started treating a Thyroid disorder (probably caused by the Lyme), and is checking me out for a bunch of other issues and co-infections. I swear to God the lab took a pint of blood out of me (14 HUGE vials), although I at least got a good look at Alcatraz out the lab window (which was beautiful, and was the closest I got to sight-seeing while I was there.)

It looks like I have what is called Chronic Lyme or Neuro-Borelliosis (the same thing Amy Tan has). This means that nearly all my body’s systems have been infected and impaired, including my immune system and my brain. My LLMD will give me a final opinion when I see her again at the end of February to review all the test results and to start treatment.

The good news is that I have, finally, a real diagnosis of the disease that has disabled me these past several years. The other good news is that it can be treated with antibiotics. The bad news is that the antibiotics will probably make me sicker at first because as the bacteria “die-off”, they create poisons that can make all my symptoms worse. The other bad news is that my course of treatment could last for years. You can’t believe how complex it is to treat these darned bacteria (called spirochetes)…. they hide and change forms and seem designed to resist being killed off. Some people feel worse for up to a year before they see improvement. Or some symptoms could improve immediately while others get worse. I could even get new symptoms – oh joy.

You may be wondering about the risk of using antibiotics for such a long time, especially when everyone is worried about bacteria becoming antibiotic-resistant. This bothered me when I first started researching Lyme. What I’ve found over the past two months is that all the best medical experts say that yes, there are risks, but, unfortunately, the only way to kill off Borelliosis is long-term exposure to antibiotics and that the benefits far outweigh the risks. I have done some research on complementary treatment modalities for Lyme, and everything I’ve read and everyone I’ve talked to agrees that these modalities can support a patient through treatment, but that nothing can be substituted for antibiotics to kill the Lyme Spirochete.

So. The bottom line is that it’s going to be a long haul, and it’s likely that I will eventually improve. My understanding is that the longer you have had the infection, the longer it will take to see an improvement. Dr. Green thinks that I have been infected for at least ten years (my carpal tunnel was probably caused by the Lyme Borelliosis Spirochete), and that it is very possible that I have been infected since childhood (remember all the ticks in Bloomington? I do… yech.).

Of course, there’s a lot more sordid detail involved, but this gives you the basics of what’s going on with me.

Thanks to all of you for your ongoing support. Love and kisses to everyone. And oh yes, happy Valentines Day!



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