Last January on my 23rd birthday I checked into the hospital, as suggested by my neurologist, to have a battery of tests run. I had MRI’s, CT scans, a spinal tap, HIV and AIDS test, and saw an infectious disease specialist. Everything came back stellar except for an elevated white blood cell count. They released me from the hospital, told me I had migraine issues, and prescribed meds.
They suggested I see a balance specialist next, so I had a balance test done. It showed slight damage in my left ear but was at the marginal level to have any impact. The specialists said I had a vestibular problem and needed balance therapy. I went along with it and had balance therapy three times a week.
Each time I went my vertigo increased gradually and the therapist was perplexed that I hadn’t shown any improvement. I decided to go seek a second opinion at the Eye and Ear Infirmary in NYC, one of the best. I took another vestibular test and various others. This time nothing came back at all. I went to the head of the department who was well renowned for making “miracles” happen with his patients. He treated me for four months, again with no substantial gains. A very confident man, he was baffled and told me he was deeply sorry that he could do nothing for me.
I was near the end of my rope. I didn’t know where to turn. I was deteriorating rapidly. I had completely abandoned the life I once cherished. I couldn’t move out of bed, and trying to maintain simple dialog with someone seemed next to impossible. I began to be moody, and found my emotional threshold was on a very short line. All the neurological factors began to come into play--the brain fog, poor concentration, poor memory, shaking, light sensitivity, anxiety, head tremors, blurred vision, heart palpitations, dyslexic indications, and problems with sensory integration.
Mid September 2009 is when I finally stumbled upon the answer I had been looking for. A friend of the family knew someone who has been in remission from Lyme disease for nearly eight years. She was informed about my symptoms, and urgently told me I should go see her LLMD. She said her case sounded an awful lot like mine. So I booked my first appointment with an LLMD in Mount Kisco, NY.
He wrote down my symptoms and took blood. The doctor immediately put me on Amoxicillin and was convinced I had Lyme. My blood work returned, and I received a negative result once again. The doctor was not discouraged, and stated that this happens to about 50% of patients due to inaccurate tests. He said it’s often referred to as a false negative. The only concrete evidence was that my white blood cell count was elevated substantially, and he called these Lyme marker indicators. He is basing my case on the literature and not the tenuous tests and knowledge that surround this dreadful disease.
The oral prescriptions I was on for two months did virtually nothing for me, so now I am on the big dog “Rocephin IV” coupled with Zithromax. The first two months I started to make some headway, with suppression of fatigue, dizziness, migraines, heart palps, brain fog, concentration, blurred vision and so on. Then I started to herx badly around week ten.
All these symptoms returned full-fledged--if not worsened--and new symptoms began to emerge. I started to feel excruciating pains throughout my body and became intermittently numb throughout the course of the day. The doctor says this is a telltale sign of good things to come and I trust him implicitly. He has done wonders for many, and I have confidence in him. This is my 14th week of treatment and am still in the abyss of a herx.
UPDATE: I am nine months into this merciless battle and I have just switched LLMD’s. I am on a very compressive protocol. I re-took my lab work and this time sent it through IGeneX Labs. Finally after nearly two years of searching for some peace of mind, I received a strong positive Western Blot Lyme test which is CDC positive through the State of NY. My blood work also showed that I have secondary infections which are caused by a tick bite as well. I am positive for Epstein Barr Virus, Mycoplasma and HHV-6. I also have low levels of exposure to Q-Fever, but my doctor believes the levels are so low that he isn't concerned yet.
I'm still unsure where and when I contracted Lyme Disease. There are four different scenarios that could have been the case. The longest would go back about six years and the shortest about two years. It is common for the disease to stay in a quiescent stage for a long time. This could explain why it took so long for my symptoms to manifest.
So my plight continues as I desperately try to make sense of this all. However, I have made some progress. I was bed-bound for months and could barely pull myself together to get to the bathroom, or hold myself up long enough to take a shower. I am still facing ailments that make me incapacitated and home-bound. But now I am able to do small tasks as long as they are limited and not sequential. Living life with a chronic illness puts things into perspective for you. It makes you appreciate the things you once took for granted, and health is of paramount importance.
The compulsory confinement is not easy for a young adult. Never would I have conceived that a simple task like walking my dog to the front yard would be so grueling, holding a conversation with my best friends would be something to dread, or simply running an errand to a store would be unbearable because my brain doesn’t have the capacity to deal with environmental stimuli. Lyme's Disease is one of the most misunderstood and distorted diseases, and is becoming a pandemic. It strips you of your identity and personal sense of self. The journey back to health is a long haul--costly, filled with affliction and adversity--and is one of the toughest uphill battles one will ever encounter.
This is going to be a massive hurdle and a trial by fire. But I have to believe I will see the dawn of a new day and regain control of my life. The sense of solidarity in the Lyme community has lifted my spirits when I am in total despair. So as a testament to myself, family, and supporters, I will put forth a valiant effort. I will make sure when I see this through, that those who are still suffering--or have just started their journey towards health--find the courage and support they need.
It's difficult to deal with all the slander, scrutiny, and lack of credibility surrounding Lyme, but we all have a purpose here. We will set the stage, as we are the pioneers for this disease. Because we played an integral part, there will be a voice for those in the future, and hopefully a diagnosis. Stay strong everyone, and carry on!
Chris Michael Nimphius, New York