Thursday, May 29, 2014

Journey to a Diagnosis

I say journey because that's truly what it was.  There were so many events leading up to our diagnosis that I want to remember.  We've seen God's hand all along the way, and I don't want to forget that! So...this may be a little lengthy!

  We've had several times that we've considered the Lyme diagnosis.  The first time was when I was going to the Cleveland Clinic last June (2013)  Patrick had been googling many symptoms and had come across a website about Lyme.  I mentioned to the doctor I was seeing that day that happened to be a Cardiovascular surgeon, that we wanted to be tested for Lyme.  She said sure, she just need to figure out which test to order because there are many to choose from.  After about 3 days, she decided which to order and I was off to the lab.  Our hopes were once again "up" that we were on the right track.  But, as you know, the result was negative. 

 When I saw the Infection Disease Doctor about two months later at the Mayo Clinic (by this time Patrick was by my side), we once again mentioned the idea of Lyme and that we heard there can be a lot of false negatives with the test that was ordered.  The doctor said, "You've had a negative test, I won't visit this idea any further."  So, that closed the idea of Lyme at Mayo.  And we didn't pursue this idea any further thinking that Mayo knew best. 

 About a month ago I came across a blog (I have no idea of how I got there) where the lady mentioned she had Lyme disease.  Her symptoms were very similar to mine!  It was also the same week of seeing my new doctor that was going to try Vitamin IV Bags to build up my immune system.  When we mentioned to him the idea of Lyme and showed him my negative test result, he said, "The test you had is very unrealiable.  You really need to have a Western Blot."

  When Patrick and I went home and researched the cost for this test, we were shocked! We had already met our deductible with our insurance and at that time were very close to our out-of-pocket as well.  The thought of more expenses that might not be covered by insurance was pretty discouraging.  We didn't decide anything together, we just really didn't talk about the idea of testing again for several days.  On a Saturday morning as I was praying, I asked the Lord, "If it's  your will for us to spend this money on this test, please put it on Patrick's heart.  Have him know we need to move forward in this."  So, I left it at that.  Sunday morning I didn't feel well.  I had to stay home from church.  When Patrick came home he said that a dear man had pulled him aside at church that morning.  He was so thoughtful and said that he and his wife somehow came across a Youtube video.  For some reason they watched the whole lengthy production and at the end both looked at each other and said, "This is what Kami has!"  It was Lyme Diesease.  Patrick said, "Kam, order the test.  It doesn't matter how much it costs."  Wow!  What a direct answer to prayer!!  I started crying right away and told Patrick what I had prayed the day before!  

The day of receiving my diagnosis, we were very nervous.  Joshua was concerned we had gotten our hopes up again.  He was right.  As we walked into the office, I saw the results on the nurse's folder.  As she looked them through, I knew I saw positive on top.  I gave Patrick a secret thumbs up.  He gave me a look...just wait to get your hopes up!  The doctor came in and sat by us to show us all the results.  Tears were in both of our eyes.  We were so thankful to have an answer!  As I thanked the doctor, he warned me of the road ahead to treatment.  I've had this way to long to just have 2 weeks of oral antibiotics.  He said he could start some treatments that might help, but I really need to see a doctor that specializes in Lyme.  He said this is an illness that can be very frustrating to the patient as well as the doctor.  Every treatment responds differently to every patient.  Then, he gave us a big group hug.  I'm so thankful for our doctor!

We had told the kiddos that if we had a positive then we were going to celebrate with chocolate cake.  So, on the way home we bought cake, crawfish and crablegs.  Celebration here we come!   As I got out of the car with a cake, all 6 of mine were outside. The older ones saw the cake and looked at me skeptically.  They were so thrilled when we told them it's a Yes!

So there is a road ahead of us on this journey.  But, God's hand has been guiding all the way.  Thank you Lord!


  1. It's good to recall the journey and how God has been there through it all. I pray that God continue to guide and direct and that the healing you need will come soon. I know you've had this disease now for so long but at last there is an answer and there is a treatment. Praise God for that. Big hugs. xx

  2. Such a sweet story of how God showed you both so clearly what to do. We love you, and our people in Karen are going to be so happy to know that God is answering their/our prayers for you.

  3. Wisconsin has an epidemic of Lyme. My sister is living there & has Lyme. I would recommend finding a doctor there.