Once I was able to think straight enough to rebuild the experience from copious notes, calendars, and medical records, I spent nearly six years writing a book about the whole roller coaster ride. It is yet unpublished, but I feel compelled to share this chapter, because I STILL see people experiencing the same stubborn resistance. Maybe my story will strike a chord and let you know you are not alone. Let me know in the comments if you want to see more chapters. Maybe I'll just end up putting it all here, one little piece at a time.
[BACKSTORY: Bella was my counselor, and I can't imagine doing Lyme without one. Dr. Brown was one of multiple doctors who good regular doctors, but as we all know, Lyme is anything but regular - at least if you're following the recommendations of the IDSA.
Bella and I kept meeting on Wednesdays, talking about life, family, and work. Things appeared to be great. I loved my husband and he loved me, our kids were doing well, and my job was a perfect fit. If it weren’t for the emotional flooding, panic attacks, deafness, pain, crushing fatigue, and cryptic nightmares, life would have been perfect.
Now and then Bella would mention something about Lyme and ask if I’d had a blood test done with the specialty lab. This was not something I wanted to think about anymore. I’d already had a local blood test at her urging and it was negative, by a hair. Besides, our insurance wouldn’t cover the specialty lab.
Still, I was growing sicker by the day. I went back to Dr. Brown, resolved to push harder on the question of Lyme. Since the tests he used were negative I needed him to either send my bloodwork to a specialty lab whatever the cost, consider a clinical Diagnosis, or refer me to someone who, Lyme or no Lyme, would know how to help me.
“You haven’t had a bite, and you aren’t really in a risk group for Lyme,” he rationalized. “Men spend much more time outdoors than women and are more likely to be exposed.”
“That’s not true.” Is this guy for real? “I am outdoors a lot—with my children, in my work, and caring for the garden.” I argued. “People can get a tick bite in their own yards.”
“You said you didn’t have a bull’s eye rash,” he argued, using my own words against me.
“Not everyone gets one, and maybe I did and just didn’t see it, or can’t remember, or didn’t know what it was.” He was so hung up on the rash.
This point-counterpoint went on for two hours. He would leave periodically, probably to see other patients, returning only to find me, an immovable boulder, inhabiting exam room 1.
The door would open and he’d say something like “None of your symptoms sound like Lyme disease,” picking up where we left off. But I knew all of my symptoms sounded like Lyme. “Your Lyme tests were negative, Donna. Most people seeking a diagnosis of Chronic Lyme disease are really just suffering from the aches and pains of everyday living and they’re looking for any diagnosis to ease their minds.”
My defiance grew. "If I had read even one article saying the blood test you used was reliable, I would reconsider, but I can't find even one.” I struggled to keep my temper in check. “I feel like I owe it to myself and my family to figure this out.” I couldn’t stop. “I believe the body feels symptoms for reasons, Dr. Brown. This has to be caused by something, and I want to know what it is, or at least what it isn't." My throat was tightening as tears welled up and burned my eyes.
He sat politely on his chair saying nothing.
I composed myself and went on. “This has been going on for a long time. I’m only 48 years old and these things aren’t happening to anyone else my age. I’m too young to feel this old.”
“Donna,” he responded quietly. “People who are seeking a Lyme Diagnosis are simply looking for a reason. They are looking for something to explain why they feel the way they feel.”
“So,” I shot back, “I’m not supposed to want to know why I feel the way I feel? And if it’s treatable, why wouldn’t I want to know so it can be treated? I have a husband. I have children. I have a career. How can I not want to know the reason?”
He sat there, nodding his head in what I mistakenly read as gradual understanding.
“Do you know the story of Tar Baby?” he asked.
I’m sure I used to, but I couldn’t remember. I shook my head no and he proceeded to tell me how The Fox used Tar Baby, a doll covered in sticky tar, to trap Br’er Rabbit, and the harder Br’er Rabbit fought to free himself the more entangled in sticky tar he became.
I stared at him, utterly confused, wondering what the hell he was talking about.
“….and so, you see” he concluded, “sometimes the thing we do to try and solve our problem ends up causing more problems than the problem itself.”
“In other words,” he clarified, “Sometimes the cure is worse than the original problem.” He stepped out again for a few moments leaving me to chew on this.
It slowly dawned on me… he was saying even if I had Lyme he didn’t think long-term antibiotics were safe. This seems like a good time to mention how, within weeks, Dr. Brown prescribed the same medicine used to treat Lyme for our son Matt, long term…. for acne.
We were clearly at an impasse, but boulders have the upper hand. If he wanted his office back he’d have to either haul me out or help.
He tried the standby depression diagnosis again, which I countered with an angry “Well, now I am depressed! Wouldn’t you be after all this?”
“Besides,” I told him. “I’m seeing a counselor now.”
“Do you mind if I ask what you talk about?”
“Yes,” I said. “I do mind,” and shared nothing more about Bella.
“I don’t understand why I shouldn’t want to have an explanation for why I feel this way.” I was insistent. “This is progressive. I’m getting worse.”
He turned to his computer screen and began typing, while explaining “I want you to be well, Donna, and I want you to get what you need. I certainly don’t claim to have all the answers, so I am writing a referral for you to see a specialist of your choosing.”
Outside of agreeing to consider Lyme, this was the best thing he could offer, and I took it.
Our two-hour stand-off was finally over. He got his room back and I got what I needed to get me to the specialist. This was my one shot to find a doctor willing to consider an outside lab and I wasn’t going to waste it.