Alameda County, CA
Diagnosed: November 2016
Current health: “After a total of 3 months on IV antibiotics, I feel fantastic.”
I hope this condensed account of my struggle with neurological Lyme Disease helps educate the public and enlighten medical professionals.–Jenn B.
“Last October my Mom and I drove cross-country as part of my move from Connecticut to California. As the miles passed, my health deteriorated. At first I noticed a slight feeling of dizziness every time I stood up. I thought it was nerves and tried to ignore it. That first night, I couldn’t sleep at all. As the trip wore on, I lost my appetite, had the chills so bad I had to contract my muscles to stop shaking and my anxiety was out of control. Night after night I struggled with sleep.
“Upon reaching California, I got an appointment with an OD. She wasn’t sure what was wrong but instructed me to go to the ER if my symptoms worsened. Weeks passed and my symptoms intensified. I slept on the couch in order to prop my head up. I felt like I wasn’t getting enough oxygen, and the back of my neck ached. I frequently thought that I was going to die.
“November 5th, I went to the ER in Walnut Creek, where they did standard tests and sent me home. When my aunt begged the ER Doctor to give me a Lyme disease test, he refused.
“Since no local doctors would take a new patient immediately, I called my doctor in Connecticut. She ordered the Lyme disease tests, all three of which came back positive, and prescribed antibiotics.
“A few weeks later, I saw an infectious disease doctor who was recommended by a physician in Alameda. He performed an hour-long exam and determined that I did not have Lyme disease, blaming the positive test result on the fact that I had Lyme disease as a child. He prescribed a range of tests, all of which came back negative, and ended my antibiotics treatment. At this point I started to lose hope, “Maybe I’m just going crazy?”
“Three days after my antibiotics ended, my condition deteriorated and after two weeks of unrelenting symptoms, the ID doctor reconsidered and told me go to the ER.
“At the hospital, they performed a lumbar puncture and inserted a PICC line into my arm for daily IV Antibiotics treatment. A neurologist at the hospital said my symptoms of dizziness were from an inner ear problem like his 80-year old mother, not a disease. Over the weeks I started feeling better, but I still felt slightly dizzy and exhausted. At my check-up with the ID doctor, he told me that my treatment would be complete after just one month of IV Antibiotics. This assessment didn’t seem to match my research, so I decided to seek a second opinion.
“The next week, I saw a Lyme-literate doctor who, after seeing my test results, was appalled by the fact that the ID doctor didn’t believe I had Lyme disease. He took the time to explain the disease and his treatment procedure. I was to continue IV antibiotics treatment for at least another month and take two additional oral antibiotics. I emailed the ID doctor to thank him for his time and say that I had decided to go with a second opinion. The ID doctor called back to say that he highly recommended I never go back to, as he put it, “this hole in the wall doctor.” He said that I had some kind of infection that I was now cured of and the dizziness would go away with some neurologic help. I was extremely baffled by this.
“I was confident in the treatment plan with the Lyme-literate doctor and now after a total of 3 months on IV antibiotics, I feel fantastic. I am extremely thankful for the Lyme-literate doctor, but I am saddened by the way I was treated by the ten medical professionals I saw prior. Most of them didn’t take my symptoms seriously and one concluded I was “psychosomatic.” Their negligence caused me extended treatment time and emotional strain.”