A Lyme State of Mind

(Sung to the tune of New York State of Mind by Billy Joel)

“Some folks like to get away, take a holiday, guess they’re feelin’ good,

Wish I could swap my body with Carrie Underwood’s,

I’m just always sick and tired, and worryin’ all the time,

I’m in a Lyme state of mind.”

Are you in a Lyme state of mind? You know, like feeling like you can never return to a state of wellness or well-being. Feelin’ out of it.  Feelin’ sick and depressed? Feelin’ crappy all the time?

Well, that was me! That was my song. “Being sick and tired and worryin’ all the time”. And I considered myself lucky. I knew why I was sick. I knew I had Lyme and it was obviously chronic.

My story is very similar to many others in my boat. In the spring of 1996, I found this huge bulls-eye rash on my chest. Thinking it was a spider bite, I just treated the bite with anti-itch cream. I didn’t feel the need to see a doctor. A month later, I’m doing the dishes after dinner and all of a sudden I can’t stand anymore – I was completely exhausted. I stumbled up the stairs to my bedroom and collapsed on my bed. I woke up the following morning with aches, chills, sweats, dizziness, and weirdly enough, still exhausted. I thought I had a doozy of a virus that I caught from one of my kids. My symptoms subsided within three days and I went on my merry way, or so I thought. It never occurred to me that I could have had Lyme disease.

One month later, my symptoms came back and that’s when it hit me – I had Lyme and I needed to see a doctor. So I went to a GP, was tested by an in network lab, was given amoxicillin and went on my merry way again.  My test results came back positive which was no surprise to me. I felt spacey, tired, woozy and achy everyday. The amoxicillin wasn’t alleviating my symptoms. My merry days disappeared. I had entered into a chronic state. I needed to see a doctor who knew how to treat chronic Lyme.

I’m gonna be honest, I wasn’t happy with my first LLMD (Lyme Literate Medical Doctor). For almost a year, Dr. Dolittle(that’s right, this doctor did little!), prescribed me course after course of antibiotics. After each course, the dr. would send my blood to a private lab that specialized in Lyme.  My lab results were always negative. I’d go off the antibiotics and within months (or less), I would relapse. At this point, I stopped eating sugar. Sugar and high carbohydrate foods made my symptoms worse. And with every relapse, I’d get new symptoms along with the old ones. My woozy feeling mushroomed into a quasi hangover that would come and go. I had Bell’s Palsy a few times. I was tired and achy, had constant brain fog, chronic sinus and ear problems, a never ending sore throat, and digestive issues.  Dr. Dolittle suggested I take probiotics to balance to intestinal flora, but didn’t tell me which were the most effective and when to take them. So, as a result, I developed  candida, which is an overgrowth of yeast in my intestinal tract.  I was put on Diflucan for a month and at this point. I decided to look for another doctor.

My next LLMD was somewhat of a medical detective. Doc Brown ( yeah, think Back to the Future!) was an investigative doctor that was the king of testing. If you had it, Doc Brown would find it. And boy oh boy, I had it all! Not only was I positive for Lyme, but I was also positive for three co-infections. I had candida in my intestinal tract and in my blood! I had Epstein-Barr virus, and other viruses. I had other bacteria that I could hardly pronounce, like Chlamydia pneumonia. I also had chemical sensitivities and food and environmental allergies. (I had allergies before I came down with Lyme disease, but since I was diagnosed it seemed like they had gotten worse). All I can say was that I was a mess!

Doc’s game plan was to treat me aggressively with antibiotics and other medicines, improve my immune system and hope that someday I would be in a complete state of remission. Chronic Lyme, he explained, could never be completely cured. See, Lyme or Borrelia burgdorferi, is a spirochete bacteria that could drill into dense tissue with the potential of causing a myriad of health problems. If caught in the early stage, Lyme is easier to eradicate with a course of antibiotics. But Lyme is a “smart” bacteria. The spirochete can actually change into other forms. Some of these other forms, like the cell wall deficient L-form and bio films, are the main cause of chronic Lyme. These forms are antibiotic resistant, hard to treat and the main cause of relapsing symptoms.

So, for the next 9 years or so, I took cocktails of different antibiotics and drugs for the Lyme and co-infections.   Each time I started a new course of antibiotics, the “die off” or toxins from the targeted bacteria, made my symptoms worse. This was known as a “Herxheimer” reaction. It seemed like my life was a symptomatic roller coaster for awhile. One day, I would feel upbeat. The next day I would feel lousy.

  I took a slew of supplements to support my immune system and the appropriate probiotics for my gut. Within this time frame, my co-infections finally tested in the normal range.  My candida in the blood finally tested normal.  (That took 3 years!) But I still had everything else.  So I went on IV antibiotics for the Lyme. I had to have a port surgically inserted just below my right clavicle. I had to see the doctor weekly so that he could flush out the port, take my blood to check my liver and organ functions and check my progress. I was first administered IV Claforan. I had an allergic reaction to it and had to stop that after 2 weeks. Then I was on about 3 months of IV Zithromax followed by almost 2 months of IV Rocefin.

I hated being on IV. Hated it!  I had no energy. I was super spacey. I was depressed. I felt and looked like the walking dead. I finally stopped the Rocefin when I developed painful bladder infections that wouldn’t go away. So for the next year, I was on short courses of antibiotics for the bladder infections.

It was about this time that I started to look for alternative treatments. I didn’t want to be on and off antibiotics for the rest of my life. If I had stayed on this path, that would have been my future. But for now, my personal health was put on hold. My son, Zack, was showing the vague yet tell-tale signs of late stage Lyme disease.

Zack loved to play soccer. He was on the freshman team and enjoyed his first year at the high school. Late October, he was stricken with what seemed like a nasty intestinal bug. He was sick for almost a week and complained about how tired he was. The following month he got sick again, with the similar symptoms. Within a month, he began to have sleep problems, he had anxiety, he couldn’t focus in school and he had no energy. He would come home from school and fall asleep.

Of course, I took him to see Doc Brown. And Doc tested him for Lyme. He was positive. He was also positive for Rocky Mountain Spotted Fever, one co-infection and the bacteria, mycoplasma pneumonia. You get the picture! So, Zack was put on Doxycyline for the RMSF. It took almost a year for the RMSF to test in the normal range. Of course, he was still positive for Lyme. Doc Brown had suggested starting antibiotic IV therapy.  I remember that gut-wrenching feeling as I looked at my son while we were sitting in the doctor’s office.  I kept on asking myself, “Is he going to have the same fate as me? Will he be on and off antibiotics his whole life? Will he always be sick? Or, is there another way? Is there another option? Was there a way out of this chronic state of Lyme? Was there a way?”

All I knew was that it was time for me to go in a different direction. It was time for me to change my tune. I had to find another way out of this Lyme state of mind.

To be cont…