January 17, 2012
Patient Spotlight - Laurie Gottlieb
Laurie Gottlieb's Lyme Disease Marathon
Laurie Gottlieb was at the prime of her life in 2005. She had a four-year-old daughter and a brand new baby girl. She also had multiple tick-born infections - but didn't know it.
"I got really sick that year," recalls Laurie. "Unfortunately, my baby girl only knows me as sick. I was not just tired - I was sickening tired."
Her doctors chalked it up to various causes. She had just had a baby. She had thyroid issues. She had Crohn's disease.
"I would go to bed at night with the most horrific spine pain," she remembers. "It was so horrible that I would cry myself to sleep."
Her doctors attributed the joint pain in her hands, knees, and spine to her Crohn's. They sent her to a rheumatologist and pain specialist. They gave her steroid injections - and the pain got worse.
"I walked around with pain patches everywhere," she says. "One day, I woke up with numbness in my groin area. I thought I was having neuropathy from the pain patches. I called the drug company and took them off. The drug company indicated that they had no record of this ever happening."
Her gastroenterologist and urologist believed that an inflamed intestine was pushing on her bladder and causing numbness by pushing on a nerve. She was given immunosuppressive medication intravenously.
Then, she began to have numbness everywhere. She was sent to a neurologist.
Pain Everywhere
"It was the most horrible, burning, stabbing, nerve pain," says Laurie. "I went to neurologist to neurologist to neurologist, searching for an answer. I was even sent to a neurosurgeon to do a biopsy of my nerve."
After receiving a positive anticardiolipin antibody blood test, doctors took yet another new turn. They sent Laurie to the lupus center at an area hospital.
She was told that having one autoimmune disease, like Crohn's, makes you more inclined to have another. She was put on several immunosuppressive medications. But nothing worked.
"I was placed on a medication to help with the nerve pain. I only got sicker."
Laurie began having severe neurological problems in 2008 - a worsening of her neuropathy, lightheadedness, brain fog, dizziness, confusion, ringing in her ears, and horrible disabling headaches that never went away.
Her gastroenterologist said in all his years he had never had a Crohn's patient have profound neurological problems. He suspected something else. So back she went to the neurologist and rheumatologist. They treated her for migraines, but they never got better.
Discovering Lyme
"One day I happened to be watching a TV show about this girl who had Lyme disease," says Laurie. "I thought, oh my G-d! That is me. I did some research and realized I had all the symptoms of Lyme."
Her doctor at the lupus center dismissed Laurie's revelation, insisting she had an autoimmune disease - not Lyme. Thankfully, her primary care doctor had an open mind.
"He happened to be doing blood work for me, so I asked him if he could also check me for Lyme. He said 'sure'. He was also arranging a spinal tap and added Lyme testing to that order, as well."
The tests found Lyme in Laurie's blood and spinal fluid.
Fast-forward to 2010. Laurie improved a little while seeing a Lyme doctor - but her progress was slow and she was getting sick from the constant daily antibiotics.
One day, she attended a screening of Under Our Skin - a film about Lyme disease - at a community college. She liked it so much that she arranged to hold a screening at her daughter's school.
Help from Dr. Jemsek
Laurie met Dr. Jemsek when he happened to attend her screening - and before long she was in treatment at the Jemsek Specialty Clinic.
"Dr. Jemsek takes the whole body and really looks at it," she says. "He tested me for co-infections and discovered I not only had Lyme, I also had Bartonella and Babesia. It turns out ticks carry multiple infections - and if you don't diagnose and treat those, then your Lyme can't get better."
The daily antibiotics treatment Laurie had been on caused its own problems. Dr. Jemsek switched her to pulse antibiotic therapy. She also had to go on intravenous-only feeding from October to June of 2010.
"Taking antibiotics every day was too much for my body," she says. "Dr. Jemsek explained that I'd never ever kill every single bacteria in my body. Antibiotic pulsing helps train my body to fight the bacteria itself and allows me to rest."
With Dr. Jemsek's help, Laurie fought back from another setback a year ago. She was in the hospital for a month with Bell's palsy of the gut or gastroparesis.
Nearly Normal
"This time last year, I could barely lift my head up," recalls Laurie. "This morning, I was at my daughter's soccer game. I still have symptoms, but I'm finally functioning like a normal human being."
When we asked Laurie if we could share her amazing and painful journey in the newsletter, she immediately agreed.
"I don't want people to end up like I did," she says. "It's suspected that I have actually had this since early adulthood. If sharing my story can help prevent anyone from getting to the position I was in all these years, it will help make the whole experience worthwhile."
In recounting her long, hard journey, Laurie recalled an encounter from years ago. "I was walking my first baby one day in a baby carrier through a grassy area. It was a weird day. I saw a pack of deer approach me. Most deer run away. These didn't. I always wondered if that was the fateful day when I got the tick bite. Was that the day that changed my life forever?"