San Francisco County, CA
Infected: Not sure, symptoms began in 2012
Current health: “I still have tough days but I know I am more like me.”
I did not accept that Lyme would be stronger than me and my mind was one of the greatest tools to help my healing. -Karine B.
Karine practices marriage and family therapy in the Bay Area, treating patients with psychodynamic and cognitive behavioral therapy. She is also a Lyme survivor who had to navigate her own path through the frustrating and often baffling world of Lyme before finding a clear diagnosis and treatment plan. Here she shares her story:
“Long story but summary is: When I first started having symptoms I didn’t even know this disease existed. I am originally from Brazil and it is almost nonexistent there. But I was then living in the US for 13 years. East Coast and West Coast. I was in graduate school for Psychology in San Francisco when everything started. I did not recall being bitten and in 2013 ,the most sad part part of my life had started.
“It began with spine pain then spread to arms, leading to headaches, dizziness, disorientation and it kept escalating. After a few months I experienced neurological issues and speech impairment. My heart was out of control, I felt it was jumping out of my body and I was going to have a heart attack. I had lack of breath and night sweats. Many nights I had to change my silk gowns because they would get entirely wet and the sheets in my bed would be covered in sweat. I lost 22 pounds and ended up just 95 pounds.
“I kept going to school in the beginning, and my friends started noticing I was getting lost in the school building, making a lot of easy tasks mistakes, and generally not being present. I had problems with handwriting which became completely unreadable.
“Then my medical search starts. I visited minimum 20-30 doctors within the first year. I had more than 500 lab tests performed. When I couldn’t find answers, I went to Stanford, Mayo Clinic, the best hospital in Brazil . The neurologist that saw me at Mayo started screaming at me asking what was my problem. I thought I could have ALS (amyotrophic lateral sclerosis), MS (multiple sclerosis), or Parkinson’s Disease, but they said I had anxiety, stress, and possibly fibromyalgia (though the symptoms did not fit the entire criteria of fibromyalgia).
“My husband is a doctor, and at some point he thought I was going to die. Other times when nothing showed in the exams even he thought I was becoming hysterical and psychosomatic.
“With no answers I dropped school. I could barely walk a block and had to sit on the stairs to go up and down from my living room to my bedroom. I dropped everything I touched and I could not chew meat. All that I could eat was soup or things that I didn’t need to chew because it would cause an unbearable amount of pain and the range of motion in my mouth was very limited. I could no longer study and I saw my relationship starting to fall apart. I could see that if I didn’t find a way to get out of that mess I would end up divorced and without friends. I even planned how I would move to Brazil, get someone to take care of me, and let my husband be happy. He wanted a normal wife just like his friends. Plus, there was no proof I was sick, despite my symptoms.
“I started to look into retreats, healers all kinds of things that are out there. During this search I went to a chicong retreat, and there I met someone that told me about Lyme disease. Everyday I would kneel down to my bed, cry and ask God that I just wanted to know what was going on with me. That God gave me that chance.
“When I came home I bought the Lyme book Why Can’t I get Better? (by Dr. Richard Horowitz), begged my husband to order lab exams from Palo Alto and sure enough. Positive Test. From here I was hopeful I was going to be healed now that I knew what I had.
“To my surprise, it was not like that and there was pretty much no cure guarantee. Now, my husband and I started looking for doctors everywhere. But we could not find doctors that treated the disease and some that we found we were not sure if they knew what they were doing or if they were even being honest with the work that they were doing.
“I finally found someone. I took a year of antibiotics and millions of supplements. My life was Lyme, and Lyme was my life. After the first year of treatment I had to start treating myself psychologically as I acquired PTSD from seeing my body disintegrate during 2 years without any medical answers and being accused of being hysterical. I stopped everything I did and I still had the symptoms and stress was really not the main reason. I did a lot of psychotherapy, somatics-based, and I decided after one year of treatment to let my body be free of medication to see what would happen. For one more year I had that dizziness on-and-off, symptoms, and pain, but I was determined to work with my mind to help my body to heal. I was able to graduate through relapses and dizziness and I became a psychotherapist.
“After just completing two years without medication this year, I know I am more like me. I still have days of more fatigue and a certain level of pain, but I am a fully functioning person. I simply did not accept being an invalid, I did not accept that Lyme would be stronger than me and my mind was one of the greatest tools to help my healing. During treatment, I was faithful that I was going to heal and I avoided negative stories and outcomes. I am helping people that had the same problems as I did through psychotherapy.
“Because Lyme is so intense and invisible people start thinking you are crazy and sometimes we start thinking it may be true. Lyme can become an obsession and this is when people start to lose loved ones. I found strength and did not let my life fall apart, nor divorce to take place in my life as unfortunately many Lyme victims do once trapped in the cycle. My treatment was integrated, I believe antibiotics, mind work, prayers and support, was the most important part key to my recovery. Mind work and therapy helped my immune system to become strong and fight for me.
“If you need psychological support, feel free to visit www.healwithpsychotherapy.com.”