(Originally posted 4/4/22)
JV’s Journey with “Lyme” : Part 1
- Thank You
- My Journey
- What is Lyme?
- Symptoms of Lyme
- Diagnosing Lyme
- Treatment for Lyme
- Doctors Who Treat Lyme
- Links to Articles and Books About Lyme
- Links to Mental Health Resources
- A Final Word
Before I share my journey and eventual diagnosis of Lyme disease, I want to give many sincere and heartfelt thanks. Thank you, listeners of Wild 94.9 and the JV Show, for your patience and understanding during our long absence. Thank you Selena and Graham for holding down the show. And thank you to my entire iHeart family. I have received so much love, support and encouragement from management (on all levels) and co-workers, throughout this journey.
I started to get strange surges in my head. Not a “brain zap” that some people experience when discontinuing medications, this was different. Every hour or so I would get a surge of energy in the center of my brain. I began to get pretty bad brain fog. I found myself having trouble keeping up with conversations we were having on the JV Show. I also was seeing black splotches throughout the day.
The surges in my head started to increase in frequency, as well as intensity. They worried me throughout the day and kept me awake most of the night. My physician wasn’t sure what it might be. He referred me to a neurologist.
Along with the surges, seeing splotches and brain fog, I often felt wobbly. At the end of the day, I would get dizzy. At the end of the month, I began to get really bad headaches. The neurologist at UCSF thought that it might be migraines. She prescribed migraine meds, but they made everything worse. In time, I would learn that medication sensitivity with my illness is common.
I was prescribed heavy sleep meds that finally gave me some sleep. I was able to get 2-3 hours of sleep per night.
I began to lose weight (by the time of my diagnosis in October, I had lost 55 lbs).
My anxiety was very high. I saw a psychiatrist who prescribed an antidepressant that I had used many years ago with success. This time, it made everything worse.
UCSF labs were showing some abnormalities, but nothing that could pinpoint a diagnosis.
I became very sensitive to light and sound each afternoon. The surges to my head hit me all day long. The headaches were indescribable. I also started to get extreme pain in one eye. Vision in the eye was distorted. I saw an ophthalmologist, and everything checked out okay. At this point, I had also seen another functional neurologist who said he could map my brainwaves. His mapping showed that my prefrontal cortex was way overstimulated, while parts of my brain showed brainwaves that were abnormally low. He said that the surges on the brain mapping looked like mini seizures.
I started to get bouts of depression and unexplainable fear. I’ve never had clinical depression before. I began seeing a therapist.
Each day at work, I was barely holding on. It was hard to do the show with all of this going on. By the end of each day, everything got worse – and by nighttime, I would be spinning with awful vertigo. As all of this was going on, I started to feel like I was losing my mind. I would eventually find out that the feeling of losing one’s mind, depression, anxiety and fear are also common with my illness.
Selena was aware of some of my symptoms and she graciously offered to start running the equipment for me. During commercials, I went for walks. I would call Natasha (working from home) and tell her how badly I was struggling. I shared with a few people at work about the symptoms I was experiencing. I told one co-worker that I was having thoughts of suicide.
I was given medications for almost every symptom. Medications ALWAYS seemed to make everything worse. I had seen several doctors – multiple times – and it remained a mystery to the doctors. I was becoming more and more depressed.
I had thoughts of suicide every night. I would cry to Natasha almost every night – partly because of what I was going through mentally, and partly because I knew I was about to leave her soon.
Along with my other symptoms, I started to get electrical surges running through my entire body. My vision became blurry. My headaches never stopped.
I was doing my usual long walks after work. I walked for miles, hoping all of this would stop.
One day, I went to a parking lot and made a video saying goodbye to Natasha. I made one saying goodbye to friends and family. I made one thanking my company. And I made one for the listeners, thanking them for giving me such a wonderful life and career. I wanted these to be seen after I had passed. I knew that day was coming soon.
By the way, over the summer, Natasha had made me a comfortable place to sleep in the closet. It was a place I could also go to get away from any light or sound. I would lie in there at night spinning, surges to the head, massive headaches until the sleep meds would knock me out for about 2 hours.
Monday night, September 13, I knocked out especially hard because I was prescribed a new antidepressant that helps people sleep. After about three hours, I was awakened by the surges to my head. I snuck out of the closet, headed downstairs with a backpack and a blanket that had a picture of Natasha and I on it. I then went to the car and wrapped myself in the blanket. I started guzzling alcohol as I swallowed handfuls of all the sleep and psych meds. As I was trying to send an apology email to my bosses at iHeart, I blacked out.
I only remember a few seconds of Natasha hitting me in the face and screaming for me to wake up. I didn’t know Natasha had called 911. I then woke up in the ER. I was very confused. I sort of remember talking to Natasha on the phone. I also remember talking to all of my bosses on the phone. They were trying to comfort me and tell me that they were there for me.
The CEO of our company (whom I love and respect) called me and said, “Hang in there, we’re going to figure out what is causing all of this.” He then called Natasha and said, “You need to check him for Lyme disease.”
Natasha said, “The docs already checked him for Lyme,” to which he replied: “When he gets out, have him checked again.”
The ER doctor said that my liver was at risk for failing, so I would be there for a couple of days. Once my liver got better, they told me I had been placed on a 5150 and was not allowed to go home. I tried to walk out of the ER, so they assigned a guard to my bed. They said, “You can’t leave, your wife is worried about your safety.”
I called Natasha and said, “How could you do this to me!!? They are sending me to a psych ward.”
Natasha was bawling. She said, “What do you mean? Do you know what this has done to me? How could you do this to ME!?”
Another day, I will share my experience at the psych ward with you. For now, though, I’ll simply share that it was very chaotic and traumatic. Inside the psych ward, I still had all of the same symptoms, but was held against my will as they tried to have me take even more medications.
Eventually I got out. Natasha and I held each other and cried. We were so glad to see each other again.
My company told me to take time off. Some people close to me thought that I needed therapy and psychiatric help, while others thought, “No, a diagnosis of what is causing all of this is what is needed. He has never had depression, suicidal thoughts or these many symptoms.” My psychiatrist agreed, saying: ‘There is no psychiatric medication or therapy that is going to make this go away.”
Natasha and I tried to go to beaches and to do lighthearted things. But my symptoms were so much worse as this point. The traumatic events had only escalated my illness. My ears were always ringing. I was getting auditory and visual hallucinations and was a wreck emotionally. I was so off-balance that I was constantly running into things. When I stood still, it felt like my body was rocking back and forth. I could not walk past anything that had patterns like crosswalks or cracks in bricks, as it would hurt my head and throw me off balance. My spatial awareness was altered. I was having fevers at night, and would wake up with tremors.
We started seeing more doctors in the Bay Area. We also drove to a top hospital in Southern California. While we were there, we asked to be checked for Lyme. They said “no” to a Lyme test because they looked at my UCSF chart and it showed that I had tested negative. As I explain, Lyme in the second part of this post, however, you will soon understand why that is a common mistake that doctors and hospitals make.
During a follow-up visit at UCSF, a neurologist suggested that I do vestibular therapy for the dizziness.
All of my symptoms increased.
On advice from UCSF, we went to a functional neurologist who treats vestibular issues. The neurologist said, “Before we treat the vestibular problem, we need to find out what is making you dizzy.” She asked me to tell her the full story. As I went back to March and told her the whole timeline of events, I got overly emotional several times.
She looked at me and said, “I think I know what this is. I’ve seen it before. I think you have an active tick infection.” I told her I had already been checked for Lyme, to which she then gave me a brief explanation about how Lyme testing works, adding that: “There are several tick infections that can cause the same symptoms, yet none of them would show up on a Lyme test.”
Results of the labs came in. Turns out, I have Lyme!
The neurologist and her partner (who is a doctor) warned me that, “as we start treating the infections with antibiotics, things were going to get worse.” They explained that “every time we kill some of these microbes, the toxins are going to spread through your system, causing a “herxheimer reaction”. This meant as they killed the infections, toxins would run through my bloodstream making all of my symptoms much, much worse.
At the end of November, we started treatment. It was hell on Earth. Not only was I HERXING, my mind and body could hardly deal with the antibiotics they were trying to give me.
December 2021 - March 2022
Aside from an occasional “breakthrough”, these were the hardest months of my life. This is an entry from the notes I was keeping at the time:
“I am able to handle most of the shooting pain and fevers throughout the body. My hands turn blue every day, and I’m often short of breath. Throughout the day, something squeezes down on the heart, and it’s scary. But what this has done to my mind has been torture. I’m still getting visual and auditory hallucinations. The head surges that started last March are now hitting the center of my head and striking the nervous system with what feels like lighting. It is now painful and very scary. I get hit with electrical bolts each day. I twitch and convulse, even in public. Most of every day, I’m unsteady/off-balance. My spatial perception is always changing. I feel like sidewalks are slanted in different directions, and the ground is moving below me. My head often feels like it’s filled with water, and as I lean to one side or the other, it gets extremely heavy.
In addition, I get bouts of vertigo, or episodes where I feel like I’m being thrown around. After my eyes get a little tired, they do not process information properly. Images are distorted, and appear to move when I know they are stationary. It hurts to look at ANYTHING other than blank walls or the ceiling. If I watch a TV show or read an article online, it hurts my eye. My brain hurts most of the day. By nighttime, it feels like I have a massive pressure squeezing it. My cognitive abilities have been affected to a point that scares me. I often can’t remember things. When I talk to Natasha, sometimes I can’t get thoughts or words out. When I get tired, everything becomes worse. If I try to sleep, I get attacked by an electrical storm. I’m still on high amounts of sleep meds that were supposed to help me sleep, but they are no longer effective. The surges to my head are just too strong. I still hallucinate on occasion. I’m not sure if it is from the meds or these infections.”
When I did have breakthroughs, I would reach out to family, as well as my bosses at iHeart. In March, I felt like I might be able to come back by April. But I explained to them that I have a long way to go. They were fully supportive, saying “Come back at your pace. Do what you can and we will all be here for you.”
Continue to Part 2
The information on the following post was gathered by JV during his journey. It is not meant to be a guide for your physical and mental health. Always consult a physician that you trust and a mental health professional that you feel comfortable with.
Go to the following post HERE - Part 2
If you missed the show live on 4/4, JV explains in his words what happened the last 6 months. You can listen to the segment below.