So this is how the story goes...

I'm starting with an apology - this will probably be a lengthy post, but I wanted to get this all out there for anyone interested and also for myself to look back on. I wanted it all in one post as opposed to bits and pieces, resulting in a longer post than I would like. We can all look forward to shorter posts in the future. :)

It was August of 2005 when I found the large circular rash with a small bite in the middle on the back of my leg. Opinions varied as to what it was, some said Lyme Disease while others said just an infected bug bite. Either way, medical care was in order. I went to an urgent care clinic after work where the doctor took one quick look and told me it was absolutely Lyme Disease and put me on an antibiotic immediately. Problem solved, right? Little did we know what was in store.

I followed up with my primary care doctor just six days later. He was also able to look at the rash and informed me that he didn't think it was Lyme Disease and decided to run the blood tests. He also had me stop the antibiotics. The initial test came back positive and I was put back on a weaker antibiotic for 10 days while I waited for the "confirming" tests. But the confirming tests came back negative. My doctor was sure to advise me that if the question ever came up, I never had Lyme Disease. My questions about what the rash resulted in the best answer being "probably just a spider bite or something."

Life went on. We got married just one month later, went on our honeymoon, and started to get settled in to the next phase of our lives. That's when trouble hit.

It was December of that same year that I woke up in the middle of the night with so much pain in my hips and legs that I couldn't lay still. It was a pain I hadn't felt before...kind of like the deepest part of my bones ached. I went to my doctor believing this was the Lyme Disease that I "didn't have." He reran the blood tests, but assured me it wasn't Lyme (of course, because I never had it in the first place). Tests all came back negative for Lyme Disease. In fact, all tests to determine the source of my pain came back perfectly clear, with the exeption of one slightly elevated test, indicating a possible autoimmune disorder.

Over the next couple of months a few new symptoms developed. There was another night that I woke up unable to move my head. My neck was so stiff and the slightest attempt at movement resulted in excruciating pain. Being the middle of the night, we headed to the ER, where no tests were done at all and I was sent home with pain killers and muscle relaxers. Fatigue started to set in so horribly that it took an incredible amount of time to get up and get showered, let alone anything else. In February of 2006, after many fruitless doctor appointments, I was finally referred to a rheumatologist.

The rheumatologist ran many more extensive blood tests and determined that I had fibromyalgia and, because of that one elevated test, was possibly developing lupus. I went through months of physical therapy and pain management appointments. And yet more symptoms started to develop. My hair started to fall out, the pain had spread from mainly my hips and legs to include the rest of my body, I became concerned with my unusually rapid heart beat, among a few others. I described it to people as feeling like I had run a marathon, then got hit by a bus, and then beaten with a baseball bat.

I tried my best to deal with all of these symptoms over the course of the next year. Life basically stopped. There wasn't much that I was able to do. Brian was left with dog walking, dish washing, meal preparation, laundry, cleaning, grocery shopping, etc. in addition to working full time and trying to take care of a sick wife, who according to her doctors, would have this all of her life. It wasn't an easy thing to wrap our minds around. Especially not for a newly married couple who thought their lives were just begininng.

Job changes occurred, and in the summer of 2007 we found ourselves in the Milwaukee area. Symptoms continuted to develop, including chest pain, shortness of breath, horrible headaches on most days, panic attacks (which I had never experienced before), facial tingling and swelling, and sleep paralysis. There were instances of complete memory loss. On one occasion I was hanging clothes in our closet when I turned to grab a hanger and was completely unable to remember what I was doing or what I was supposed to do next. Another time, I walked out of Target into the parking lot and suddenly couldn't remember how I got there, where I was supposed to go, or where I even lived. It would take about 10 to 15 minutes for my mind to bring itself back, but it was still unsettling.

I had given up the rheumatological route and decided to start over with a new set of doctors. The new doctors were no help at all. I had heard things like, "we can only take care of two of your complaints today - which two are the worst?" and "sometimes we start to experience aches and pains, it's just part of the aging process." To them, I was no doubt crazy and a waste of their time. But what choices did I have?

In fall of that year, on one of the many days I was home sick from work, I saw a story on Good Morning America about a woman who had a story so unbelievably similar to mine it was almost spooky to watch. She had chronic Lyme Disease...the result of having Lyme Disease that went untreated or undertreated over time. Up until this point, I had suppressed my thoughts of Lyme Disease and tried to trust that the doctors would eventually find out what was wrong with me. Seeing this story brought it all back and confirmed what I had kept in the back of my mind all along. I had further confirmation when some people who had also seen it called and said "Tiffany, you have Lyme Disease!!!" I finally knew without a doubt what I had, and had to find a way to get medical confirmation of it as well as treatment.

Using the internet, I was able to find a Lyme Disease specialist in Wisconsin. You'd think that would be easy, but it was surprisingly and frustratingly difficult. My first appointment was in May of 2008, and after even more extensive tests and an extremely thorough doctor appointment (for the first time in my life), I got the validation I needed. I had Chronic Lyme Disease. Due to the duration of the infection and the courses of steroids I had been on, the disease had spread both to my brain and my heart. My immune system was almost non-existant. Treatment began right away with a triple antibiotic therapy and many additional natural supplements.

It's been a very complex disease to treat, but I'm happy to say that I have seen progress. I no longer have horrible night sweats or sleep paralysis. The pain throughout my body is usually at a very low and tolerable level. My headaches have gone way down both in severity and frequency - prior to treatment I was getting several migraines a week, now I get mild headaches a couple of times a month, maybe. My panic attacks have stopped...I haven't had one since treatment started. I also haven't had a memory lapse (outside of the norm of forgetting where the keys are, what I came into the room for, etc.) since treatment started.

I'm not in the clear yet, as I still struggle with the fatigue and weakness as well as a couple of other residual symptoms. I'm striving for stability, strength and stamina. I am still on the triple antibiotic therapy, and the list of natural supplements has continued to grow. I'm on about 6 prescriptions and somewhere around 20 supplements, totalling over 50 pills each day. I'm hopeful that's my peak and I look forward to seeing that list start to shrink.

My next appointment comes in early April. Let's hope for more good news!!