Funny, Borrelia. I was JUST lamenting tonight about how my hectic work schedule, being the business planning and budgeting time of year, was keeping me from blogging more frequently about another day in the life of lyme. Have also been feeling uncreative, uninspired. And not feeling very spontaneous with my writing. Too tired for any of it. And then, the phone rings!…
…It’s my girlfriend. One of my closest and craziest friends. Giving me an update on a development that she made an urgent phone call to me about Monday morning at work. I will give her the alias of UnCrazyLady. I know that sounds strange given how I just described her as one of my craziest friends, but you’ll understand why that’s the alias I give her shortly, Borrelia.
The development was this. Her husband, also one of my dearest friends, discovered a tick embedded in his leg. After removing it, not quite intact, UnCrazyLady starts to feel the panic set in. Why shouldn’t she? She’s been reading my blog for months! Posts like Mindfreak! And Dear Borrelia! And The Mad Bladder! And Note to Self! All about life with lyme. That’s enough to give ME a panic attack! And I wrote it. And live it! And her husband provides the household income. What if he goes down, she’s thinking? Because of the physical or mental effects of lyme, if infected. Physically because of the pain or symptoms, or mentally because of the relentless of the disease?
His alias will be InItToWinIt. Why? He’s not panic attacking. He’s a Whole Foods, organic eating, raw cooking, exercising powerhouse. He’s strong, fit, lean, and extremely health conscious. He’s confident in his health and his body and has good faith that he is in great fighting form. I completely agree. If Borrelia, he has been exposed to you, he will be more than a worthy opponent.
UnCrazyLady called me for some quick advice. They were going to contact his primary care physician, and wanted any ideas on how to approach the visit and concerns. I indicated that most likely they would give him one dose of doxycycline. They did. I suggested that she push for at least a 30 day dose. And in the meantime research lyme literate experts in the area to consult with after that. She did push. He was not given the 30 day dose of doxycycline–she was told the one day dose was the CDC protocol. She then rather heatedly commented that she does not necessarily have faith and confidence in many matters where the government is concerned. Only she did not use the words faith and confidence 🙂 The doctor told her he was not going to presribe the 30 day dose just to “treat” her anxiety. And looked at her like she was crazy. And that InItToWinIt was crazy for marrying her (according to her keen observation of the docs body language)….
…WHOA buddy. I can think that my dear friend is crazy. For reasons deserving of a completely separate blog. But YOU cannot, I repeat cannot, think my friend is crazy when it comes to this!!! Therefore. Out of spite, and sticking up for my friend, her alias for the purpose of this post is UnCrazyLady. Get it now, Borrelia??
Feeling somewhat defeated, she asked whether or not the tick could be sent for testing. The doc said no, that costs $600. She called Quest, they told her it costs $198. I told her to call IgeneX. Can’t remember if they test ticks or just blood, so I figured she should check and see. The doc also said not to worry, there is no bulls eye. Or flu like symptoms. But to come back if he does come down with flu like symptoms. Because those are really the only indications of infection. Oh REALLY? No, UnCrazyLady, I insisted. Be aware, be conscious of subtle–hopefully not severe–changes. Eye twitches. Feet falling asleep. Recurrent sinus infections. Headaches. Note anything new or anything happening more often that it used to. Don’t listen, I told her, to any medical professional who, if it existed, sound like they just read The Idiots Guide to IDSA Guidelines.
Meanwhile, UnCrazyLady told me she had contacted lyme specialists at Mass General and Tufts and awaits to hear back from them. But not without a referral from her primary doc first. Oh brother. Welcome, I said. Welcome to the circus. The fight for information and access and help and resources and guidance and answers. The Ringling Brothers and Barnum&Borrelia circus!!! Sorry you have a ringside seat now, UnCrazyLady. Really am. Also for some reason I have the song in my head from the children’s movie Madagascar 3 “Circus Afro” sung by Marty the Zebra. Because the lyme experience, even when just trying to get initial doctor understanding and support and answers after a tick bite, is such a frustrating circus. Then again, as UnCrazyLady and I chatted UnCrazyLady to UnCrazy Lady, we agreed this is a lyme thing, but also an american healthcare thing! A circus. All of it. Take it away, Marty:
Look out, Borrelia. UnCrazyLady–she’s a spirited, feisty, all or nothing fighter. That includes patient advocacy. She will make a circus out of YOU! She will track down the people and answers she needs. I will be learning from HER. In no time at all. That’s how she rolls.
It is a hard position to be in, we agreed. We both do have a certain level of understanding that not every single tick bite can be treated as it it will be the first and last. Can it? We get not necessarily getting an extended course of treatment everytime. My neighbor for instance has had 3 tick bites in the last few weeks alone! Does every incident require the full 30 day (and then some) treatment? Sometimes I wonder, how can it? We live in the northeast. This is our reality. The moment we set foot outside, we know it could happen. Same for all the followers of this blog, so many from the same states. Pennsylvania. Florida. California. Michigan. This is your reality too. Even when my own child had a tick, I didn’t have him tested right away. It was the beginning of the summer. He could go through the summer with one bite. Or one hundred. I waited. For signs. And at the first one, acted. There’s no right or wrong. These are difficult decisions we face or will face, and so will our neighbors, friends and family. But its the attitude of many in the medical profession. The lack of compassion. The lack of understanding the fear and anxiety and uncertainty. The inability to offer much beyond “this is what the CDC says” that is frustrating and feels like a road block.
InItToWinIt takes his one dose of doxycycline tomorrow. Thinking of you friend. Sorry you are both an act in this circus now. Someday the tables will be turned. We will make a circus of the unsupportive medical profession. We will make a circus of Borrelia. I swear we will and I believe it. Awareness and Advocacy will be the key. With UnCrazyLady in the game now, Borrelia, our ability to make others aware and to be effective advocates just got better!!!