Excuse Me. You Diagnosed Me With What?

I’m back! April was my last post. I apologize for dropping off the face of the earth, but it’s been a crazy six months. My hope is to get my bravery journey back and track with this post. But to start, I figured you’d want an explanations of why I’ve been MIA. Here it is:

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You know those moments? The ones that alter your perspective so totally that your life is irrevocably changed?

I had one of those a few weeks ago.

Let me set the stage.

If you kept up with my Acts of Bravery challenge—one brave act every day—then you know I’ve had some health issues. Health issues I believed to be related to celiac disease. I’d tried everything to keep it under control—diet, exercise, mentally beating myself up—short of going to the doctor. But after another flare up so severe I missed my kids’ robotics tournament (my son’s last before he graduated high school) lying in bed with screaming gut pain, I realized I needed an expert’s help.

So, I went to immediate care (because who has time to find a family physician when you’re denying that anything could possibly be wrong?).

If I’m going with full disclosure, my husband forced me to go, and with all the friends and family members and robotics team parents knowing how sick I got that weekend, I had to go. I promised. This was an integrity issue.

The really nice doctor at immediate care stuck me with needles, had me pee in a cup, agreed I had celiac disease, and set me up with a primary care physician. I was not pleased. Another doctors appointment? More money out of my pocket? And for what? So she could tell me nothing was wrong just like the last two decades?

Predictably enough, my test results all came back normal. But I had promised to see this thing through to the end, so pouting, I went to see my new primary care physician.

I loved her instantly. You see, I take supplements. Crazy ones. At the time I was seeing a homeopath and who had me on horse milk. Or was it Lachesis (aka big ass snake)? Or was it Sepia (squid ink)? Regardless, with all my supplements, I filled up the half page provided to list them, and then some. I figured I’d get some push back, but what the heck, this was what kept my symptoms at bay (usually). I would list them proudly and she could take her snobby opinion and . . . well you know.

My doctor came in with a huge grin on her face, waved the paper with all my supplements and said, “I love everything you’re taking.”

Ummmmm . . . what?

With newfound confidence, I told her my symptoms. About three minutes in, she said, “I think you have Lyme disease.”

My husband and I looked at each other with wide eyes. I don’t know what he was thinking, but me? I was thinking, “Yeah right, I’m not sick enough to have Lyme.”

Then my doctor asked a series of random questions:

Do you have eye floaters?

Do you have aching or shooting pain that moves around your body?

Do you have trouble recovering after exercise?

Do you have night sweats?

Do you have muscle twitches?

Doesn’t everybody?

She assured me that everyone does not.

Then she gave me a five-page list of symptoms (or was it fifteen? It was overwhelmingly long) and had me mark which ones I experienced with severity and frequency. I probably had a third of them, more if you counted past symptoms. So she ordered me an exorbitantly expensive blood test for a lab down in southern California that specializes in Lyme, gave me a few websites to research, and sent me on my way.

It took me over a month to get the blood test.

Many excuses abound.

Primary excuse: After reading the websites I convinced myself I didn’t have Lyme. All of these random symptoms could be experienced by anyone at any given time, for a number of reasons. Did the Lyme people just take a bunch of symptoms, toss them in a “hard to diagnose” blender and decide, “Ah ha! It must be a tick borne illness?” That’s what it seemed like to me, anyway.

Secondary excuse: It took me a ridiculous amount of time to find a local blood lab that would syphon my blood for the sole purpose of not making any money to send it to a competing organization (said lab in southern California). It was a nightmare.

Then said southern California lab refused to take my medical credit card.  I do not have insurance or an exorbitant amount of money to spend on a test for a disease I knew I didn’t have so, I cancelled the test.

That was in early June.

Fast forward to September and the Phone Call. Said southern California lab went ahead and did the test anyhow and, regardless of the fact of whether I had Lyme or not, I owed then an exorbitant amount of money. And to kick a girl while she’s down, my doctor received the test results back in June. June 29th to be exact.

I looked at my calendar. It was September 3.

I was angry. Very, very angry.

I called the doctor I used to love, but now believed diagnosed everyone with Lyme. The nice receptionist who answered the phone said, “Why yes, we’ve had your results back since June 29th, you were supposed to see us July 14th, but you cancelled that appointment.”

“Yes,” I said, reining in my need to reach through the phone and pinch her windpipe closed. “Yes, I cancelled that appointment because I believed they hadn’t run the tests.”

“Would you like to make an appointment, then?”

I rubbed the bridge of my nose to keep my brain from exploding out the top of my head and said, “Only if my doctor thinks I need to come in.”

“I’ll check and call you back,” the receptionist said cheerily.

Four days later, the nice receptionist called and said my doctor wanted to go over the test results with me.

Irritating.

I had an anxiety disorder (I even wrote an awesome blog about it, that I never shared, well . . . because I don’t had an anxiety disorder) not Lyme. But I had promised to see this through to the end.

Sigh.

I would go in and maintain my integrity. I would listen as she told me I didn’t have Lyme and we would talk about next steps on how to handle GAD (generalized anxiety disorder).

But, as you have probably guessed, that’s not what happened. She came in, holding a stack of papers with what I assumed to be my lab results, sat next to me in the chair, and said, “Well, you definitely have Bartonella, a coinfection of Lyme, and your markers for Lyme are high enough that because of the Bartonella, I can treat you.”

Mind reeling shock. “Excuse me?”

She proceeded to tell me the results again and, as I sat there reworking my assumptions for the last six months to twenty-five years (because I probably contracted it in high school), she explained the protocol required to heal.

Curious? First, I have to detox and get rid of all the inflammation in my body, so it can be well enough to fight the bacterial infection of Bartonella and Lyme which is almost impossible to kill.

Yay.

Getting rid of inflammation requires a gluten-free and sugar-free diet. I have a cupboard full of supplements I’ve never heard of, for purposes I never knew existed, and I am supposed to take a daily nap, followed by a freaking hot bath to kill the spirochetes (the bacteria has a fancy name), in my superficial tissue (that means skin). In case your curious, the bath water has to be 104ºF for no shorter than twenty minutes, to ensure maximum sweating.

To wrap up this already too-long blog, I want to assure you that I have high hopes for a full recovery. I’m going to annihilate this thing. And, I’m going to get back to writing. Already I have a ton of material I want to share with you, not Lyme related (if you want to know more about that there are a hundred million places online you can research). Such as new series (Pinocchio retelling), a few memoirs, and new blogs about the mental and emotional process I’ve already embarked on in the last few weeks since my diagnosis. I think these blogs posts highlight pretty universal hangs-ups that require bravery, and I want to share them and get your feedback.

Feel free to reach out with any questions, comments, or what’s worked for you. I’m an open book.

 

 

 


2 thoughts on “Excuse Me. You Diagnosed Me With What?

  1. What a journey you have been on. It takes a lot of courage to face this diagnosis and a lot of determination to see it through. You are indeed a very strong n delightful woman

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