*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

Previous post: The Phone Call: You Have Lyme

After I hung up the phone, I walked back to my desk in absolute shock. I couldn’t believe the doctor had just told me I have Lyme Disease.

How? How was it possible that I, the most non-outdoorsy person on the planet, had Lyme Disease? I started trying to go back and think of the times when I possibly could have come in contact with it, which was no easy feat with the state my memory was in.

In July, we had gone home to see our parents and my in-laws live in a very wooded area. Could it have been there? Just after that, we went to a family reunion at a campground in Kentucky. Could it have happened then? I just didn’t know.

I only remember one time actually having to pull a tick off of me and from my best estimation, it was the summer of 2000. The tick was attached on my lower back and I found it when I was taking a shower. Later as I continued to do research on Lyme, I would continually come back to this time and wonder if that’s when it all started. But at the time, I brushed it off because my symptoms hadn’t started until the summer of 2012, or so I thought.

As I sat at my desk, I frantically started searching the internet for doctors and treatment plans. While the doctor who diagnosed me had agreed to treat me, she wasn’t covered by insurance and she told me I had a very long road of treatment ahead of me. I simply couldn’t afford to pay out of pocket for all of the medical care. She also sent me a waiver that would have to be signed informing me that there was no set treatment for Lyme and I basically had to agree to this upfront before treatment. I later found out many Lyme doctors require this but it didn’t sit well with me at the time.

So as I was searching, all I found over and over again was instructions on how to get a referral through certain non-public channels and to NEVER reveal a doctor’s name online who treats Lyme. I would soon find out that doctors were losing their medical licenses by treating patients.

After I told my husband about the diagnosis, I called my mom. Her first reaction was the same as most of the people I know – that’s great, now you know what it is and it can be treated! But as I began to tell her more about what I was learning, she started to see that a diagnosis of Lyme was anything but great. She spoke to the doctor she works with and he recommended that I find an infectious disease doctor to see.

I searched through the covered infectious disease doctors in my insurance plan and started making phone calls. Office after office agreed to make appointments until I told them why I was coming in. Then the answer was the same – we don’t treat Lyme. One actually hung up on me when I said I had Lyme. I was only a few hours into a diagnosis and was already beginning to see how difficult this was going to be.

So I turned back to the internet and began to use all of these back door channels to locate a doctor who would treat me or that I could at least get a second opinion from. One forum led me to a Yahoo group for Lyme in my state. I posted there and within a few minutes, I had multiple emails with the name of a local doctor. One local doctor. I would later get other names but quickly found out that finding a doctor who treats Lyme who also accepts insurance is nearly impossible.

I called her office and asked if she accepted my insurance. They said she did but she wasn’t listed in my insurance’s database. I made the appointment, determined to at least get a second opinion, no matter what the cost, then called my primary care manager for a referral. Thankfully, my insurance company did approve the referral. I was set to see her on Friday, November 16th. That gave me four days to research all I could and completely freak out about all that was happening.