Tuesday, May 17, 2005

How I Got Here, Part 54

Welcome back, BGs.

I had some questions yesterday about Lyme. This isn’t exactly a medical blog, but I do have a certain experience with the disease, so I’d like to take the opportunity for some quick education on the subject.

Not all ticks carry Lyme. Only deer ticks. But these can be so small in their baby stage that you can hardly see them.

You will hear “facts” about Lyme Disease that aren’t true—from doctors. Such as the myth that it’s only found in the Northeast corner of the U.S., and maybe some in Northern California. Truth is, it’s found just about everywhere, and it affects far, far more people than are diagnosed with it. Doctors in general don’t know about Lyme and will spout what little they know based on CDC (Center for Disease Control) reports, which aren’t accurate. It is not true that you must know you were bitten by a tick. I never knew I was. It is not true that you must experience the “bulls-eye” rash around a tick bite to know the critter was infected with Lyme. I never had the rash (and 50% or even more of patients don’t). It is not true you can’t have Lyme unless you live in the northeast. It is not true that if you have Lyme, all you have to do is take the normal amount of antibiotics for 4-6 weeks and you’ll be cured. This, again, is per CDC regulations. These regulations are way out of touch with reality.

The medical community is slowly catching up as more and more people are diagnosed with Lyme. But it will still be years until they fully understand how widespread and insidious it is.

Here’s the worst part. The typical “Elisa” test recommended by the CDC for Lyme is very ineffective—coming back with a false negative perhaps 50% of the time. Therefore if you need to be tested for Lyme, you must send your blood to a Lyme-specific lab like Igenex in Palo Alto, CA. Igenex tests for nothing but Lyme and its coinfections, and they know what they’re doing. There are plenty of people who’ve had falsely negative “Elisa” tests who go on for months, even years, without knowing what they have. They lose their health as a result.

Bottom line—not to scare any of you. Just to help you understand. It’s highly likely that some of you out there know someone who has Lyme—and is yet undiagnosed. Lyme can be misdiagnosed as Parkinsons, MS, rheumatoid arthritis, chronic fatigue, etc. because of its myriad possible symptoms.

Okay, medical lesson over. Back to our NES.

I started taking the new round of meds the day Mount Hermon Writers Conference was over. I expected that the Herx period the meds would cause would begin in a couple days.


The very next day, Wednesday, I took an amazing dive. Every bit of improvement I’d had while at Mount Hermon was gone. In fact, I was far worse. And—whereas the symptoms had been mostly from my waist down, now they spread all over my body. The joints in my hands, fingers, elbows were in terrible pain. I couldn’t even stand to spread my fingers and lace them ever so gently. Could barely open my pill bottles. It was hard using a cane because of the weakness in my arms and hands. And my brain—forget it. No more writing, period. Couldn’t do it. I could barely think. Barely get dressed. No driving, no going anywhere. Just sitting in my chair or lying in bed, dealing with the pain.

Every day I prayed the Psalms. Slowly, with a hard time reading. But I did it. God helped me praise Him. Oh, He was teaching me a lot about praising Him when I didn’t feel like it!

Brink of Death, the first book in my new big contract with Zondervan, sat about ¾ written. No way now I would make that deadline. I didn’t even know when I could start writing again. As terrifying as that was, it was also a huge burden off me. No more getting up every day feeling I had to write no matter what. Now I simply couldn’t do it, and that was that.

Man. And all those people at Mount Hermon had prayed for me. Now look how bad off I was!
God, what are you doing?

He had a few things up His sleeve.

Read Part 55


D. Gudger said...

Brandilyn, I'm wondering if my mom has Lyme. She lives in the woods in PA (a high risk area). She's loosing use of both of her hands, been misdiagnosed time and time again and the symptoms are getting worse. Your post today, about how Lyme is mistaken for rhematoid arthritis set off some loud alarms in my head. I'm gonna call her and tell her she needs to be tested . . .
Thanks for sharing!

D. Gudger said...

Where did you find the information on Lyme? I called my parents and they are going to explore the possibility. My mom is on the cusp of having the tendons in her fingers and hands cut to "free" them up.

It's hard to discern what web sites are legit and what ones are hooey.