Alameda County, CA

Infected: unknown
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.”

9 Comments on “Jenn B.

  1. Thank you for your post. Couple of things,
    1. Why did you call it neurological Lymes? My sons symptoms have all been severe depersonalization pressure in the head, tinnitus head tremors…
    2. How are you doing since the antibiotics? Again thank you

  2. Hello,

    Can you please share contact info for your Lyme literate doctor? I am a 31-year-old, otherwise very healthy mom of 3 and have been struggling since last September with Lyme. It is sucking the life out of me and I have all but lost hope. I have seen 8 medical providers, none of which who take it seriously. Please please help me.

    1. Hi there! Sadly personal recommendation are not allowed on this site. I once thought it was rude that we are being ignored however I’m noticing when I see someone ask the person sharing their story , Bay Area Lyme responds with a generic listing of Lyme literate doctors for you to pick. I believe this is to avoid Possible liabilities. Hope you find the help your seeking as I’m desperately searching too!

    2. We appreciate your frustration and do empathize. At Bay Area Lyme Foundation, we aim to encourage and foster knowledge-sharing — both by supporting and disseminating scientific research and in creating a platform of resources, networking, and information for the general public. As a research-based foundation (and not a clinical entity), we are unable to provide individual advice or counsel Community members are welcome to share their learnings, recommendations, and referrals (and many have benefitted as a result) but all must understand that such information is not specifically endorsed or validated by Bay Area Lyme Foundation. It is a long-game battle but together we will overcome these interminable tick-borne diseases and hopefully find a cure!

    1. Thank you Sue! I think I was braver when I was younger, I was pretty scared this time around, but luckily I had a lot of family support.

  3. As someone who lived with Jenn throughout this ordeal, I can attest to the strength it takes, not only to suffer with the symptoms, but to endure the scary ignorance of the medical professionals in the SF Bay Area. Between wrong information for testing and subsequent denial for a test, to misspelling of her name on blood tests, and then refusal to add Lyme tests on blood lab requests, it all delayed the final diagnosis. Huge shout out to hospital infusion center 40 mins from her home, where she went daily for three months for IV antibiotic infusion, her insurance did not have home health service in her home town.

    One blood test when we thought she first displayed the symptoms would have saved insurance over $100,000+ and the PT $10,000! A course of oral antibiotics most likely was all she would have needed if they did an initial blood test! Scary that even positive Lyme tests were ignored. So thankful we have Jenn back and for our Lyme literate doctor!

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