Donna and Kayla's Story Part 2...The Diagnosis

It is now 2013 and the arthritis pains in my knees were getting really bad. I cringed every time I had to walk up steps, my heels started hurting so much it was hard walking on them. Every morning waking up was hard as my body would tremor and quiver. I started wondering if I had MS or Parkinsons. It would take several minutes to be able to walk normal after getting out of bed. I felt like I was 100 years old. I was not even 45, I shouldn't feel like this! My daily Ibuprofen was taking it's toll on my stomach and at times it wasn't helping anymore. I asked the Lord for answers, I asked Him to reveal what was going on or was I just being a big baby. The Lord answered my prayers in the most incredible and unexpected way.

In July 2013 my twin daughter came downstairs and showed my daughter in law a bug bite on the back of her leg. Allie looked at it and asked if she showed me yet. Kayla came and showed me and this is what we saw. 

We rushed Kayla to the walk in clinic as Allie and I were pretty positive this was a Lyme EM rash.  The doctor looked at it and said it didn't look like Lyme but more like an allergic reaction to a bug bite. She traced it with a skin marking pen and told me to give her Benadryl and keep an eye on it. The next morning I traced to show how much the redness has spread. I called Kayla's pediatrician and got in to see her. Once again we were told this didn't look like Lyme but an allergic reaction, most likely a spider bite, but still they took some blood to test for Lyme and also gave her prednisone. This was at 3pm and by 9am the next morning they called and said Lyme was negative. Just FYI, in June 2013 Maine passed a law that states that the doctor who is requesting a blood Lyme test must inform us about the high percentage of false negatives. Kayla's doctor didn't mention a thing to us.

We continued watching this 'allergic reaction' grow and grow. After a week of watching it grow, Kayla started having pain in her neck and her leg was on fire. She was complaining that her shin and ankle were hurting, it was 11pm at night when I took this picture and we rushed her to the ER. The ER doctor took one look and said this is classic Lyme. How could they have misdiagnosed this? Kayla was immediately put on doxy, but only for 2 weeks. 

At this point I started researching Lyme disease and I realized that 2 weeks of antibiotics may not kill the bug that was spreading so rapidly in Kayla. I went online looking for a Lyme Literate Doctor (LLMD) but the closest I found was in MA. Then my dear sister in Christ gave me the name and email address of a lady she knew that was battling Lyme and she had a doctor in Maine who had helped her tremendously. I emailed her and she gave me the name and number of the doctor, I called right away and left a message. That evening he called and I gave him the entire story. He gave me another weeks worth of doxy and we made our first appointment with him 4 days later. He is so booked but he just couldn't let an 11 yr old girl get chronic Lyme disease so he fit her in. He was truly the Lords answer to my prayers. Not just for Kayla but now me!

Here's what her leg looked like after a week of doxy. 

Now back to Donna's diagnosis.....

Part 3......You have Lyme Disease Donna