"Coming Clean In Session:" Lyme Disease - Part II

(Spoiler alert – this is not a blog on my passion for sports. See yesterday’s blog which segues into today’s piece)

Doing therapy for over 30 years, especially with trauma survivors, is tough work, period.  Yet, somehow it just came naturally to me.  Maybe because I heard my teammates’ whispers in the locker room at Bowen High School, after our games.  Maybe because I saw some bashed-in faces in the park on 87th and Jeffrey, across from Chicago Vocational School -  guys just started talking to me, while I was holding my baseball mitt, hanging out on the corner.

Several years ago, I was working with a woman in her 40’s who’d literally been to several counselors for many years, and multiple psychiatrists for medications. But currently, no one had “the time to work with her needs.” She called my office and I heard her voice on my answering machine.

I was drawn to her message, and just knew it was right to work with her.

I’ve had to be fairly careful about managing my energy output, being a Full Professor with multiple responsibilities. Therefore, my private practice had to be limited. However, I knew this person from other “situations,” and our Social Work Code of Ethics informs me that I do “pro bono” work – offering my expertise for free.

Similar to my other clients, her 30 year history was filled with multiple incidents of sexual and physical abuse, drugs and alcohol, and para-suicidal behavior, such as cutting her arms and legs, and hair pulling. Along the way, her diagnoses included schizo-affective disorder, bipolar / mood disorder, borderline personality disorder, major depression, various anxiety disorders such as being obsessive-compulsive, social anxiety, agoraphobia (not going outside), and addiction to various substances and behaviors.

After 3 months, there was “some improvement,” but not much.  Finally, she informed me she was “playing around with her medications.”  During the time in therapy with me, she switched from one psychiatrist to another, due to insurance plan requirements.  Thus, she “came clean” to having “more kinds of meds” than I was previously aware.

She wanted to go off several of her medications, and was doing it “her way.”  Yet, her paranoia and delusions were resurfacing daily.  Our discussion was quite frank that day,  and I empathized with her wish to go off at least one or two of these pills.

However, I explained the importance of titrating off one of her meds only one at a time, in order to determine its effects. I simply explained, “If you go off 2 at a time,  and each every 1 or 2 days, we won’t know which med is causing your paranoia, which one your delusions, and which may be okay to gradually go off.”  We also discussed how critical it was to talk about these attempts and wishes, with her psychiatrist.

Her fear of “telling him the truth” was understandable, but we reviewed the importance of working with the doctor, with my support.   I could see “it” in her face and body posture:  this conversation was going nowhere. Fast and downhill, more quickly than I could cross-country ski at Tahoe.

So I self-disclosed.  I came clean.

“Joy, I got Lyme disease in 2001.  It was awful. For 16 months I saw many doctors and was given tests for fibromyalgia, chronic fatigue syndrome, heart disease, multiple sclerosis, diabetes, depression, anxiety disorders, given lots of other psychological diagnoses, and had multiple x-rays, MRI’s, and blood tests run. I even asked for the Lyme test, since I’d been camping in the woods. But the test they gave at that time here was 50% false negative (disgusting, huh?).

So my doctor said it was probably just menopause.  But I knew it wasn’t. I could barely sleep, and had lots of neurological pain and neuropathy in my feet and legs. Ultimately, I had to stop working at the university for 1.5 years.

Eventually I did get the right diagnosis.  But I’ve got those Lyme spirochetes in my cells forever. And they only come out of dormancy when my immune system is taxed heavily. And the pain comes back.  And I have to go back on my antibiotics to kill the litter buggers that are happily swimming in my blood, while fraying every nerve cell in my body.

But here is what I want to tell you:  I found the right doctors in Massachusetts and Connecticut, who specialized in Lyme. And they told me that neurological Lyme destroys the serotonin receptor sites in my brain. So, no wonder I could not sleep more than 3 -4 hrs/ night.

And like you, your lifetime trauma has changed the neurobiology of your brain.  So finding the right combination of medicine is crucial to helping you stabilize your life now, along with continuing the therapy.

For me, it took 4 years till we found the right combination of medications to help me manage my neurological symptoms and to help me sleep at night. I went through every sleep medication on the books, which didn’t help. Ambien:  4 hrs. of sleep tops. Sonata:  3 hrs. only.  And then I went through every anti-depressant to help me sleep. Some of them literally sped me up, and some made the pain worse than ever in my head, as if it were caught in a sieve.  None worked. Ever.

And now, I’ve finally got 3 medicines that I will probably have to take the rest of my life. I’m grateful that those little pills are out there.  And I did it with the help of the Lyme psychiatrist and Lyme doctor.

Do I like taking them every day?  Of course not.  But I’ve accepted it, and have found a good life to live.  And like you, I have a lot to look forward to, with my children, family, work and friends.”

Joy nodded. We sat there, in silence.  Coming clean.  Both of us, that day.

By next week, Joy brought in a note to her psychiatrist for me to read.  She was smiling, had told her husband about some of the history she felt ashamed about, and said that she never had imagined my being sick – but rather saw me as someone always full of energy and life.

Joy said she knew I was always trying to help her, and thanked me for all my “hard work.” But, knowing that I was “stuck with having to take pills,” like her, the rest of my life, somehow made her feel okay about knowing she would be “ a little upset about these things, but who isn’t?”

She could barely remember some of her delusions she had previously emailed me about, but did remember being paranoid about her neighbors "making fun of her.' We wrote up her weekly plan of action, and she left smiling.

But there’s “more at the door” about my life back then.  And how I had to fight for my life against a whole medical system and insurance industry that had whittled me down to a piece of plastic, which I first saw in Ms. Biagini’s freshman biology class at Bowen High: a petri dish. Part III.

And as I finish this tonight, I can’t help but be glued to the TV and watch Marion Hossa’s 5th goal of the season in OT, after that pass from Kane.  8 points in 4 games, 1st place in the West. I’ll take it.


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    a combination of topics brought me to your blog: Lyme's disease (bunch of my fellow Iowans have contracted it): mention of Bowen; mention of Marion Hossa (nearest Black Hawk fan is probably 400 miles from where I live); and your 'handle'. enjoyed your column. @iowaralph

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