Wednesday, October 5, 2011

Dreaming of Green

I am dreaming of the day when undiagnosed Lyme patients can simply go to the doctor and get properly diagnosed and treated. Awareness for Lyme disease is so poor, that a huge majority of people with Lyme disease--myself included--get diagnosed only after talking with someone else with Lyme disease.

Every doctor and specialist I saw said, "There's nothing wrong with you."  "Well, then why can I barely walk? Why this bone-crushing pain? Why??!" I wondered and sometimes asked the doctors. I had given up on doctors when, as fate would have it, I bumped into an old friend who happens to have Lyme disease.

The inevitable question came up that you come to dread when you don't feel well: How have you been? Prompted by my friend, my story came tearfully rushing out. But instead of having one more person flatly deny, "There's nothing wrong with you," I was answered with kindness, "Your symptoms are the same as mine were. We have to get you tested for Lyme!"

My test came back highly positive for Lyme disease and multiple other tick-borne diseases. My friend on the street could recognize Lyme disease in me, yet doctor after doctor, specialist after specialist couldn't recognize it!

I am dreaming of the day when psychiatrists know to ask their patients, "Have you had a tick bite recently or traveled to an endemic area?" Panic attacks, anxiety, depression and agoraphobia can all be symptoms of tick-borne diseases like Lyme disease. I went to a psychiatrist in 2001--shortly after a tick bite--to seek help for a sudden case of agoraphobia, severe separation anxiety from my husband, severe depression and panic attacks.

Had the psychiatrist known to ask me if I had had a recent tick bite, maybe it would have been early enough that I could have been cured of my Lyme disease. And even if it was too late to be cured, I still could have learned how to protect my not-yet-born children from being exposed to multiple tick-borne illnesses in utero.

I am dreaming of the day when midwives and obstetricians routinely ask their patients if they've recently had a tick bite or traveled to an endemic area. This simple question could save countless babies from this rapidly growing and silent epidemic. Congenital Lyme disease is not something you ever, ever want to experience, but it's happening more and more.

It's frustrating waiting for increased awareness of Lyme disease. Lyme green would definitely look pretty next to the pink breast cancer awareness products sweeping the nation, but I'm getting tired of waiting for the sea of Lyme green to hit the shelves. (Bring it on!)

While we wait for the world to finally take notice of the Lyme epidemic, the number of endemic states is rapidly escalating. While we wait, more and more mothers unknowingly pass Lyme disease on to their unborn children. While we wait, you or someone you love may become infected with Lyme disease.

If caught early enough, Lyme disease is usually curable. How sure are you that your doctor knows the facts? Are you willing to bet your health to find out? According to one study, the average person with Lyme goes 22 months and 7 doctors before getting properly diagnosed. Add in the fact that Lyme disease is more prevalent than AIDS and you may begin to see why those of us with Lyme disease are getting very antsy waiting for our "silent epidemic" to finally receive its voice.

Let the sea of Lyme green begin!


  1. Great post, Alyson. It is totally crazy that regular folks seem to know more about this disease than the doctors.

    Hope this helps people wise up and listen.

    PS Love the photo! :)

  2. Really really good post Alyson. Hope you are doing okay?

  3. yes i agree a very good post i have had several lyme tests but results were inconclusive however im sure i have lyme disease i used to travel extensively and be very gregaroius now i have such intemse agoraphobia that i cant leave,the house,nor can i talk to people not evem my closest friemds i am mere shadow of my former active,self