My Story. How I got diagnosed with Lyme Disease...

I was diagnosed with Lyme Disease on June 16, 2010 and my life forever changed that day.

I get asked all the time how and when I got Lyme Disease.  The truth is, I don't know.  I never knew I was bitten by a tick.  I never saw one or found one on myself.  All I know is that I have Late Stage Chronic Lyme Disease which means I was bitten a long time ago.  It could have been 10, 15 or even 20 years ago.  I will never know how, where or when I contracted it.

The next questions always are how did I know I was sick and how did I get diagnosed.  I think that I had Lyme Disease dormant in my system for many years that was brought out by stress, which commonly happens.

Back in 2009, I was living a very hectic, unhealthy lifestyle.  I was working a minimum of 60 hours a week and working long nights, I was overweight, I didn't eat right... I wasn't healthy to begin with.  Earlier that year, my husband's father was diagnosed with cancer and we spent that year watching him  fight and lose his battle.  We were at his bedside when passed away in October of that year.  That took a heavy toll on the whole family.

The day of his funeral I got a call from my best friend.  She wasn't attending my father-in-law's funeral because she had been training all year to do the Avon Walk for Breast Cancer and it was the the weekend of the walk.  She decided to do the walk- 39 miles- in honor of my father-in-law which touched my heart in a way she will never know.  When she called me that day she was hysterical and I could barely understand her.  When I could finally understand what she was saying, I couldn't believe what I was hearing.

A mutual friend of ours (her other best friend) had died tragically at an Arizona resort retreat and it quickly became national news.  I spent the week of my father-in-laws death going through his funeral services and the following week I spent helping my dear friend through the funeral services of our friend who was lost so needlessly at such a young age.

It was a really rough two weeks.  Without going into all the details, there was more to all of these stories than I mentioned.  It was a two week period that I will never forget.  It changed me.  And I think it "woke up" the Lyme Disease that was hiding inside me just waiting to pounce.

After the funerals, I tried to get back to work and life but I wasn't the same.  It was taking me a long time to recover emotionally.  As days and weeks went by, I thought I would feel better but I didn't.

As Spring approached, I was still not right and decided maybe I needed to get into shape and that would help.  I took the first steps to eating better and I started walking every morning with friend.  We started out slow and over time we worked our way up to 5 miles every morning.  I was losing a little weight and should have started to feel better, but I didn't.

As we continued walking every day, it was getting harder for me instead of easier.  Then it got to the point that I would get up at 6am to meet my girlfriend, we would walk our 5 miles and then I would have to go back to bed for the rest of the day.  It puzzled me that the exercise was tiring me out instead of making me feel good.

There were other strange things going on too but none of them a big enough deal to make me think anything was wrong.  I was falling down the stairs quite often and just blamed it on being clumsy.  I was in a deep depression and my husband insisted that I start therapy (for the first time in my life).  I was experiencing vision problems that lead me to go for an eye exam but they told me my prescription had not changed and perhaps I just needed reading glasses.  I broke out in red, itchy bumps and thought it might have been chicken pox but it wasn't.  I was experiencing bouts of dizziness, confusion and I couldn't concentrate.  I even fainted a couple of times.  I had trouble working and began working less and less.  When I drank alcohol, it started hitting me way harder than it ever had before.  I was spiraling down hill fast but I hadn't put it all together yet.

In June, a friend gave me a gift of a massage as a thank you for something I had helped him with.  I went for the massage on a Friday afternoon and it was fantastic.  I felt great.  It was deep tissue massage of just my back and shoulders that left me a little sore but it felt so good.  (I now know that the worst thing you can do if you have Lyme is get deep tissue massage because it stirs up all the Lyme bacteria in your body).  A day or two later, I wasn't feeling well and spent the next couple of days in bed.  I thought I had the flu and just stayed in bed.  No big deal.

When I got out of bed two days later, I walked past the full length mirror in my bedroom and was stopped in my tracks by what I saw.  I was bruised everywhere.  I stood there looking at myself and suddenly realized something was wrong.  How do you spend two days in bed and end up bruised like that?

I called my doctor and they wanted to see me immediately so I drove there right then.  As my doctor examined me, he looked puzzled and the next thing I knew, every doctor in his practice was looking at me and conferencing outside my exam room.  I left my doctor's office that day with a referral to an oncologist and a blood specialist.  I suddenly realized this was serious and I was scared to death.

I got right in to see the cancer and blood specialists and they ran tests but were just as puzzled as my primary care doctor.  There wasn't a clear answer or a clear diagnosis.  I left there with pile of orders for tests that were going to run about $3000 and I had no health insurance.

On our drive home from that appointment, I told my husband that none of these doctors have a clue what is going on and I felt like they were just throwing darts at dartboard with all of these tests they wanted me to have.  I mentioned that there was a naturopath's office on my way to the grocery store and I drove by it all the time.  I suggested that I give them a call before going for all of those tests.  What harm could it do?  It turned out to be the best decision I ever made.

I called the naturopath who was fantastic and got me right in to see her.  She did a live blood microscopy analysis and I saw my blood cells on a large computer screen where she explained what the size, shape and other characteristics of my blood cells were telling her.  As we were examining my blood cells on the screen, she also pointed out to me what she believed were spirochetes.  I had never heard that word before and didn't have a clue what that meant.  She explained that there were only three reasons for those particular spirochetes to be in my blood- either Syphilis, Rocky Mountain Spotted Fever, or Lyme Disease.... and chances were it was probably Lyme Disease.  She gave me the name of a Lyme Literate doctor that I needed to follow up with for a diagnosis right away.

I have to admit that at that moment I was relieved.  "It's just Lyme Disease" I thought.  No big deal, right?  WRONG.  I had no idea that day what a long road I had ahead of me..  I went home, made the appointment with the Lyme doctor and started googling "Lyme Disease".  I started reading and learning everything I could and watched the movie "Under Our Skin".  The more I learned, the more horrified I became as I realized that Lyme Disease was a very serious and complicated disease that was very difficult to recover from.

I had to wait a couple of weeks to save up the money to see the Lyme doctor and in that short span of a couple of weeks, I started to realize that my husband was experiencing some symptoms on a smaller scale than me and I wondered if maybe he could have it too.  I brought him to see the naturopath and have his blood cells looked too and sure enough, he had spirochetes in his blood too.  So our first appointment with the Lyme doctor was as a couple, not just me.  Thankfully we caught my husband in an earlier stage than me and his illness has not been as severe as mine.

I saw the Lyme doctor and he diagnosed Lyme Disease in both of us.  We both had blood tests that came back negative, however Lyme is diagnosed by symptoms and not just the blood test because the test is not very accurate.  This is very important to understand.  Many doctors who are not Lyme educated give you the blood test, it comes back negative and they take that answer.  The test is only about 30% accurate so a negative test means almost nothing.  Don't accept that as your final answer.

So that's my story.... the basics anyway.  I hope you continue to explore this blog.  I spend a lot of time educating myself on my disease and I am committed to helping other Lyme patients in any way that I can.  Please contact me if you would like to.  I believe whole heartedly in paying it forward and I will help anyone I can.

Wishing you health,
Tara