I awoke with a horrible fever. My body felt like it had been taken over, as if I were stuck in a terrible dream. Everything ached. My arms and legs were on fire and tingling with numbness. All of my joints had become stiff and, when pivoted, sounded like coffee beans in a grinder. My motor skills were sporadic and uncooperative, similar to a drunk trying to prove their sobriety. There had come a tremendous disconnect between my mind, my body, and the world that surrounded it. This was no terrible dream, but a horrific reality filled with infected ticks, nematodes, hook worms, parasitic flukes and bacteria that reproduce inside your blood. It all sounds a bit like a science fiction movie. Unfortunately this is everyday life for a large portion of people in this country, a portion of people which now included me. 


My doctor suspected a tick-borne disease and a Western Blot test for Lyme confirmed his diagnosis. While attempting to find a specialist, my doctor was shocked to hear his referral refused by every Internal Medicine and Infectious Disease practice in Wilmington, as well as Duke University Hospital in Durham. Facilities only stated that they were not accepting Lyme patients. I wondered why. Was the expensive and most popular medical insurance not enough anymore? My condition seemed bleak. I found myself both denying my mortality and wishing for the pain relief of death. This truly unfathomable situation had altered me and I wasn’t alone. These experiences of rejection and neglect are shared by the majority of Lyme disease sufferers, and we are all being systematically failed by those entrusted with our healthcare.


Patients around the globe are being misdiagnosed and left untreated. Diseases that possibly could have been avoided with proper awareness and treatment are escalating into more serious health complications. Medical authorities suggest that the onset of the initial infection of Lyme is accompanied by a round rash. However, most people with the disease don’t recall the rash or even being bitten at all. They only realize something is wrong once they begin to experience symptoms. The authoritative guidelines suggest that a one month regimen of a first-line antibiotic is enough to treat the infection sufficiently. Even after several months of this suggested regimen, my symptoms were worsening at an alarming rate.


Chronic Lyme disease is not widely accepted, but the diagnosis is becoming widely recognized as having scientific and medical support. Six months after my diagnosis and still without treatment, I was experiencing a host of consequent symptoms. A typical day included involuntary movements, fainting, seizures, heart palpations, irregular heartbeat, shortness of breath, intermittent loss of vision, loss of memory, neurological episodes, disorientation, vertigo, candida, celiac, skin rashes, nervous system damage, arthritis, neck pain, and back pain. My family was terrified and confused. I was made to feel as if I were psychologically impaired and in need of mood altering medications. I went from outgoing and active to completely immobilized and anti-social.


After several months of neurologists’ appointments, tests, weekly vitamin injections and first-line antibiotics, my condition hadn’t improved. One bitterly frigid morning, I awoke so ill that I decided to drive myself to an urgent clinic. I was seen in Wilmington Health, a multi-specialty clinic, staffed by more than seventy physicians. Their Infectious disease doctor suggested that an Internal Medicine Specialist would be more suited for my situation and ordered blood work for a new Lyme test.


Several days later I followed up with the internal specialist. During the medical examination she proceeded to explain the differences in labs across the nation, and that the lab which had performed my original Lyme test was not a reputable one. The new blood work was sent to Stony Brook University’s Lab, their most trusted facility. Upon completion of the exam, the internalist stated that I was Lyme free. She justified her reasoning by informing me that you couldn’t get the disease in North Carolina. When I asked to see my test results, she divulged that they weren’t back yet and said she was not the one to help me. This was not just a personal devastation but an irresponsibility that compromised my life, my family’s lives and my condition. I was fired from my job for medical absences and forced to downsize and move in with my partner. We were at a loss as to what to do next.


Several weeks later, we received the blood test performed by Stony Brook University’s laboratory. Not only was the test positive, but the lab had even printed on the results that I met the criteria for a positive test by the guidelines currently in place. We had heard of rumors floating around regarding Lyme and its controversy, but until this moment had no idea how realistic they were. Insurance coverage is only extended to those whose doctors participate in the insurance company’s network. The current guidelines used by insurance companies to deem what treatment is fit, directly contradicts what most treating doctors and their patients experience. This means that as a doctor honestly trying to treat your patient, you may now be liable for suit by your own participating Insurance Companies.


There are conflicts of interest within the medical authorities that are making these calls as well. The majority of the board members, setting treatment guidelines, own patents on the disease and its research. There is also a conflict pertaining to corporate funded research in general and the ways grants are written. Governmental control seems to have redefined our code of ethics and the practices we otherwise adhere to. Thankfully some these medical authorities are currently under investigation. Unfortunately Lyme research is still contradicted even when the overwhelming response to modern treatment is positive and undeniable. 


The worst thought is that our children are being turned away sick. Some are left knowingly misdiagnosed and many are left untreated. Wilmington Health Associates never did any further testing, nor where they interested in testing my daughter. The implications of Lyme left untreated are crippling in adults and immeasurable to children. Multiple Sclerosis, Celiac’s disease, Lou Gehrig’s disease and Alzheimer’s have all been linked to the bacteria causing Lyme. A later and more thorough blood panel revealed that my baseline, for having the disease, was at least six years and my symptom list suggested ten. 


I believe our only real option in favor of furthering the uninhibited growth and wellbeing of mankind is to call to justice the proper medical authorities. We must assemble new boards that are transparent and supported by international, unbiased, scientific research. Doctors should be up to date on the latest information as well as, encouraged to diagnose, treat and refer with honesty. Insurance Companies should refrain from dictating medical practices and Lyme awareness and support need be a fully accepted community effort. I am hopeful that Lyme sufferers will someday get access to the testing, diagnosis and care they deserve, so that we can trust in our medical system again.

This is only the pathos/ethos version of my story. There is logic behind this argument and plenty of scientific research to back it up. The next step to my story...

Sincerely,
Christina Budres