Tuesday, September 4, 2012

A Fighting Chance

Emu! Photo credit for this amazing shot here.

An emu is a very funny looking bird. It's also the name of the place where I spent my Labor Day weekend--the EMU, aka the Epilepsy Monitoring Unit. Sadly, there were no emus there. But with my wires and electrodes, I was about as funny looking as an emu!
All in all, there were 24 electrodes on my head and 6 on my chest.

Being in the hospital is rough. Being in the hospital with a controversial disease is a nightmare. (I have chronic Lyme disease if you're just tuning in to my blog.) I was treated respectfully, but the neurologists did make their beliefs on Lyme disease known to me. "You do know Lyme disease is a very controversial topic, don't you?" "Lyme disease is eradicated with a short course of antibiotics; after that you're fine. There is something called Post-Treatment Syndrome, but that's pretty rare." "We don't understand why you're having these "spells," but we can send you to a psychiatrist if you like."

It wasn't pleasant, but I survived my stay in the EMU-with-no-emus and I had two episodes while there. I found out today that the results of my video-monitoring EEG were completely normal; I am not having epileptic seizures. What a blessing!

However, if not for one thing, I would be very upset since being sent home from the EMU with nothing other than a (rejected) referral for a psychiatrist. That one thing? I had an appointment today with a Lyme-friendly neurologist. Other than my Lyme doctor, this was the only doctor that I have ever been to since my diagnosis who was extremely knowledgeable about Lyme disease and just how badly it can ravage the body and brain.

I cannot describe the feelings I felt today, seeing this neurologist who not only validated the immense suffering that I have been through, but told of other Lyme patients with similar things going on. This was a doctor who, instead of washing his hands of a patient with Lyme disease, was not afraid to say that there is so much that is still unknown about Lyme disease. This was a doctor who treats patients with Lyme disease instead of shoving them out the door, leaving them feeling baffled and discredited.

The neurologist said my episodes are a type of hyperkinetic movement disorder, which is caused by a problem in the basal ganglia part of the brain. I've had a very exhausting several days and my brain is struggling to wrap up this post. It's getting extremely difficult for me to write, but I really wanted to put out an update tonight, because I know a lot of family members and friends are waiting to hear what is going on.

In a nutshell, we don't know exactly what is causing my episodes. It is highly likely that they are being caused either by my Lyme disease or another tick-borne disease that I have called Bartonella (to which I believe I was very recently reinfected). The episodes may go away on their own or they may get worse; at this point, we don't know. What I do know is that I feel like I actually have a fighting chance now knowing that there are still doctors out there like my Lyme doctor and my neurologist who aren't giving up on me or others with this incredibly complex and misunderstood disease.

I have two options right now. I can do a short course of steroids (which is generally contraindicated with Lyme disease) or I can take anti-seizures medicines, which has proven to be helpful in treating these, uh, I don't even know what to call them anymore...these things. My brain is shutting down now. I need to go to sleep.


  1. Holding you in the light as you guys make these decisions, Alyson. Love and peace to you and for you.

  2. Thanks for the update, Alyson. I will be praying for you and the decision you have to make. Thinking of you often.


  3. Still praying and believing for your healing. Much love to you!!

    Aunt Lois

  4. How you speak of your stay at the hospital resonates with my own experiences. They always seems to bring up the same questions:

    "You had Lyme Disease right, it's gone now?"
    "Chronic what?"
    "What's your doctor's name?"

    It gets to be so irritating to constantly be painted into a corner and treated like you're a psych patient whose "illness" has been allowed to go unchecked for too long.

    If the doctors that treat us like lepers would just stick around longer than the few minutes they have allotted for patient #16528 they might actually learn something about us, enough to give them the real picture of how this disease and it's related infection can so adversely change your life.

    Healthy happy people do not just get up one day and decide to "feel" sick and if sympathy was a priority, your damn sure wouldn't want to pretend to have a tick-borne disease, because that's about as far from what your going to experience as you could possibly get.

    In return for our suffering and struggles we get rejection, speculation, suspicion and criticized- not exactly the experience an attention-seeker would be aiming for, but time and time again we are accused of this.

    It's a sad state of affairs but one that many are actively fighting against and blogs like this are helping to change.

    I definitely agree it is an exhilarating experience when you call a doctor's office and the first few words out off the receptionist's mouth during intake are "Have you been diagnosed with Chronic Lyme Disease?", as it just simply doesn't happen unless you go to a Lyme-Literate doctor.

    I wish you luck on your journey and hope healing finds it's way to all of us!

    - Kenneth

  5. Just a little note to tell you today that I am thinking of you and hope you are hanging in there. Much love to you.

  6. My sister is experiencing seizures with lymes disease. What is the name and location of your neurologist that specializes in Lyme?

  7. Hope you are doing better. My daughter is having non epileptic seizures from Lyme disease. Can you tell me who your doctor was? Thank you so much.