My (Lyme) Story

...the short version

In September of 1998 my mother noticed that I was not acting like my vivacious self. I was the type of kid that ran outside the minute I got home from school and played in the woods until I was forced to go inside. I never noticed myself, until my mother told me many years later, that I had begun being much more fatigued and experiencing flu like symptoms. I injured my right knee in gym class one day and from then on I have experienced severe knee problems. That was just the beginning.

I went through doctors telling me I had Juvenile Rheumatoid Arthritis, Lupus, Fibromyalgia, to being crazy and having countless other diseases all to go through the treatments for each aliment then when it didn’t work the doctors would simply say ‘well I suppose it isn’t that’.  

After traveling up and down the entire east coast seeing doctors perched on ivory towers for 8 years, spending thousands upon thousands of dollars I finally found a doctor that was willing to give me a chance. 

I vividly remember my first visit with him. I went back into the exam room with a white board on the wall. He told me to tell him every symptom I had as he wrote it on the board. Once he was finished he stepped back to look at the cluttered board and said “You can’t have all of these.” My grandmother that was accompanying me on the visit said “But she DOES!” Then my doctor said words that he has surely lived up to over the past 5 years; “I won’t be able to figure this out on my own, but between me and God I will find out what is wrong with you”. And he did! Not a month later he CORRECTLY clinically diagnosed me with Late Stage Lyme Disease.

Oral antibiotics were my first route of treatment. I did those for about 6 months until my stomach completely shut down and I was no longer able to keep anything down, pills or food. This was the time I met several people my age on Facebook that also had Lyme. They were genuinely concerned about my declining and encouraged me to see an LLMD. Then the next summer, after being off of Lyme treatment and not eating any solid food for months I was forced to be put in the hospital due to severe malnutrition and dehydration. I ended up getting a feeding tube to give me long term nutrition. Three surgeries, one J-tube, one PICC line, and 21 days later I got to leave the hospital. It was certainly not the way I had planned to spend my summer. I guess blessings do come in disguise though because due to the infections I obtained during my first surgery I was put on high dose IV antibiotics, which was killing two birds with one stone, the infection and the Lyme bacteria.

After convincing my parents that seeing an LLMD was the right thing to do and finding a Lyme doctor I could afford, my local doctor agreed this would be the best next step. 

Off to New York I went. The trip itself was a treacherous two day drive but even in my state of crappiness I couldn’t help but to be excited to see New York for the first time. As I lay on top of pillows and comforters in the floor of our car I looked out the window up at the top of skyscrapers. The first appointment with my LLMD was not that encouraging, although I did find relief in the fact that he was convinced I had Lyme. He told me it was essential to eat food even though it caused me discomfort. Easy for him to say I thought. He ordered blood test through Igenex, which came back confirming that I indeed did have Lyme, plus some nasty co-infections to go with it. A few months later I got Mono and became even more ill. 

Now...3 PORT’s, 8 PICC lines, and 4 years later I am still continuing my IV antibiotic treatments along with IVIG treatment.  I am unfortunately no longer seeing my LLMD simply because I became too complex for him to handle. In these past 5 years since I was diagnosed with Lyme I have also been diagnosed with POTs, tachybrady-cardia, Gastroparesis, Chiari 1 Malformation. Hashimoto’s Thyroid disorder, polymyositis, dermatomyositis... oh crap, there’s other stuff I just can’t remember, I guess that shows that memory loss should be added to the list. 

Right now I'm kind of at another dead end as far as finding a new treatment plan that I can withstand and afford. Hoping another open door will be presented to me sometime soon. As of now I'm doing my best to get ride of all my secondary infections (pneumonia, kidney infections) and treating 2 of my new diagnoses that can benefit my Lyme as well. 

So my Lyme journey continues on and although there may be deep valleys to travel through I will journey on to find health and greater happiness in life.