The Tricky Task of Diagnosing Lyme-My Journey

On a summer day in 1998, I had no idea my life would change dramatically by something as small as a pin head.

 That night while I was taking a bath, I noticed a tiny brown tick on my stomach. We lived in North Louisiana on acreage. Our Sheltie romped in the woods during the day and stayed in the house at night. Occasionally he brought in a tick. 

Little did we know the tick was infected with Borrelia burgdorferi, the bacteria that causes Lyme disease. 

Within a few months, my body began to break down. Because Lyme was not endemic in the South, it would be six years before anyone thought to check for Lyme. The rounds of doctors began.

I began to have debilitating migraines, as many as two or three a week with many middle-of-the-night trips to the emergency room. We went to neurologists, had brain scans etc.

When severe pain and fatigue set in a few months later I was diagnosed with Fibromyalgia and put on a regime of meds for that. Then it spread to most of my joints and my back. We went to orthopedics and started painful injections to treat the pain.

Soon I developed allergies against just about everything.

The doctor did the scratch test on my arm to identify what I was allergic to. She made dozens of tiny scratches on my arm then waited to see which, if any, turned red showing an allergic reaction. After the allotted time she looked at my arm and her eyes widened. My arm looked like a Christmas tree. Every single scratch was bright red.

I ended up seeing an allergy specialist in Florida with his own protocol. The only upside to that one was I got skinny because I couldn’t eat anything. JIt turned out folks with Lyme disease develop allergies easily, but again, no one thought to check for it.

Another symptom which made me feel like an idiot was brain fog. 

Sometimes I couldn’t finish a sentence. I couldn’t remember what I was doing. As an active interior designer, that wasn’t good.

We realized we were simply chasing symptoms and no one could figure out the root cause. At that time, Lyme was primarily in the Northeast and certainly not endemic to Louisiana, so doctors didn’t routinely check for it. However, as a last resort, my doctor ordered a blood test to check for Lyme, and it was positive. That was the beginning of my first journey toward wellness.

Everyone is not as fortunate to get an accurate diagnosis. Diagnosing Lyme is tricky. It’s called the great deceiver because it mimics so many other diseases.

Lyme is typically diagnosed through blood tests and the current blood tests are not entirely reliable.  The blood test can’t check for the bacteria that causes Lyme. It can only look for your immune system’s response to it. Once the bacteria gets into your blood, your body begins to make proteins called antibodies to fight it off. The blood test checks for those antibodies. 

           However, if it’s done too soon after the tick bite, your body may not have produced enough antibodies to detect the disease. On the other hand, if it’s done much later, and the Lyme has already progressed to the chronic stage, it may not pick it up because the test is designed to identify the Lyme bacteria in the acute stage.

Another reason is that a compromised immune system may not make the antibodies in sufficient numbers for blood tests to pick it up and people with Lyme often have compromised immune systems. Click here to read Dr. Oz's article on the major symptoms of Lyme.

 Lymedisease.org has a questionnaire of symptoms. You can go through and click the ones that you have, then submit the form to their site, here. They will send a Lyme disease symptom assessment that you can take with you to your doctor.

Scientists are working on a more accurate blood test but until it’s available, we’re stuck with the current ones.

If it’s just one thing after another, it might be Lyme, especially if it’s multi-system symptoms.

The wisest advise I can offer is to see a Lyme literate doctor, one who is specialized in diagnosing and treating Lyme. Click here for a directory of Lyme specialists. The site is sponsored by ILADS, International Lyme and Associated Diseases Society and has the latest info on Lyme.

One last thought—The path to recovery is long and arduous. I’m learning that

my attitude toward all of this is HUGE. 

I had a chest port put in last July and began to infuse daily IV antibiotics. The first two months I suffered through severe Herx reactions, a condition resulting when antibiotics starts killing off more bacteria than your system can handle and results in tremendous bouts of severe nausea and increased pain.

 When I finally got past that, and two months later my doctor changed my meds. I was terrified that the Herx would begin again. Doubts began to plague my mind. Would the new meds have other side effects? Was I ever going to get well or was this it? And at the bottom of it all, was it worth it?

 The meds I had been administering involved simply injecting the antibiotics into a plastic line attached to my chest port. It took about fifteen minutes. For the new meds, I have to use an IV pole like they use in hospitals and it would take up to 2 hours a day to infuse.

After we got that pole home, just looking at it made me feel sick.

I had to get quiet in my spirit. To quote an old adage, I decided to Count my many blessings. I had people who loved me and were cheering me on to get well, I was getting the treatment I needed and insurance was paying the lion’s share of it (they didn’t the first time). I didn’t have to work. Lots of sick people have to work regardless. Changing my attitude changed my day.

 One of Amy’s dear friends calls seasons like this ‘Growth Opportunities’. I agree.

 I now call the IV pole my little buddy.

Lyme-the Second Time; One Woman's Journey

Well, my late-stage or chronic Lyme is back. Two weeks ago I had another chest port placed. I am again on IV antibiotics and expect to be for the next six months to a year. Because Lyme is now at epidemic proportions here in the South (it was first only in the northeast) I’ve decided to blog about my journey this time. It’s called Lyme-the Second Time-One Woman’s Journey.

Lyme is spread by infected ticks. If you don’t know someone with Lyme now, you will within the next 5-10 years. I first got sick in 2000 when we lived on acreage. We had a dog that romped in the woods during the day and came inside at night. Every now and then, he shared a tick with us. :(

Lyme is very easy to treat when first diagnosed, a simple round of oral antibiotics and you’re good to go. The problem is when it is not treated early enough, it moves into the chronic or late-stage. Because it was not endemic to the South, doctors didn’t (and some still don’t) check for it. By 2004, I went from an active interior designer to all but bed-bound when one doctor decided, as a final resort, to check for it.

Besides feeling awful and enduring severe pain, Lyme can make people lose hope. At one point in the first round with Lyme I was at that stage. My husband Mical and daughter Amy held my rope and wouldn’t let me go even when I wanted to.

Doctor after doctor couldn’t figure out what was wrong with me. When months turned into years, and the pain became increasingly unbearable, I asked Mical to pray I would die. Thankfully, he wouldn’t. I pray my blog will help someone else who quite literally may be despairing of life. The more we know, the less fearful this severe and traumatic disease can be.

Lyme would really be a fascinating study, if it weren’t so tragic. It would make a great science fiction movie. If only it were fiction. Lyme was created in a laboratory as an agent of bioterrorism and continues to be studied today by our government for that use. 

I’ll be talking about this and other Lyme related topics along with ones like ‘What to expect at the various stages of treatment’ and ‘What to say and not say to a chronically ill person.’ If you’d like to follow it, click above on the right to join. I love to cook, so there’s also some great recipes there!

Please feel free to comment or ask any questions. I'd love to hear from you.