Last month I was having extreme fatigue. The kind where if you could even make it to a shower, that would be your only “event” of the day, you were done. Where it hurt to life your arm. Where you can’t get off the couch and you just have to let your laundry pile up and the house get messy.
I went to another doctor in my regular doctor’s group since she couldn’t fit me in. She was convinced I had Mono and tested me, along with my thyroid. Everything came out normal but the extreme fatigue was still there.
There’s been an avenue in my odyssey of illnesses that I have not explored, although many people have urged me to and that is Lyme Disease. Lyme Disease can often be misdiagnosed as Rheumatoid Arthritis, Lupus or Fibromyalgia and of course I have all three.
About 12 years ago, I did test positive for Lyme and my doctor wanted to start me on the short course of antibiotics that can be effective if the disease is caught early. I wanted a second opinion so I saw an Infectious Disease Specialist. She told me that I tested negative, that I was not sick, nor did I look sick. About six month later, the pain in my feet started on what was to be a lifelong journey.
Looking back with the knowledge that I have gained from being a professional patient, I wonder why the Infectious Disease Specialist didn’t give me a third, and deciding test. I also now think, “What really would have been the harm in taking the antibiotics?”
When I saw my Primary Care Physician to tell her I was still fatigued, I mentioned Lyme Disease to her.
“Did you ever have a bullseye rash?”, she asked. I told her I had never noticed one and she said she never tests anyone without a bullseye rash. Which is a little scary because many people do not present with the rash or, if they are bitten on their scalp, never see it.
After speaking with a good friend in the “Lyme Community”, I was given a referral of a “Lyme Literate” doctor. He was a Rheumatologist who noted Lyme as one of his specialities and was used to dealing with people who had Lupus and Rheumatoid Arthritis too.
But making an appointment with him proved to be a challenge. When you schedule an appointment with any Cleveland Clinic doctor, you are sent to central scheduling. The woman scheduling me asked why I wanted to see the doctor.
“Because I am having symptoms of Lyme Disease.”
“Have you been diagnosed with Lyme Disease?”
“You cannot see the doctor unless you are positive for Lyme Disease.”
“But the doctor is the one who will make the diagnosis of Lyme Disease!”
I hung up with no appointment made, with ideas running through my head.
I could say I want to see him for Lupus and when the scheduler asked if I had a Lupus diagnosis I could say yes, and get in that way. Once I was in I doubted they would throw me out for lying.
A few days later I saw the doctor who tested me for Mono again because I was having Costochondritis symptoms and explained to her my difficulty. She very nicely asked her office to schedule me an appointment and I was in, on February 21st!
So of course, just like the car who doesn’t make the weird sound when you take it to the mechanic, my extreme fatigue has gone away.
Having no symptoms of Lyme or anything now, I feel it would be very difficult to get this doctor to test me for Lyme. I don’t want to look ridiculous.
So I’m seriously considering canceling my appointment. I waited a long time for it but right now I do not consider myself physically ill and feel this would be a waste of money and time for both of us.
What would you do? Would you see a new doctor without any symptoms?