Moving Forward

Within 24 hours of starting treatment with the antibiotic Doxycycline, I felt an abatement of my most acute symptoms: searing left-side migraine and jaw clenching, burning pain in my skin, stabbing pains in my joints, blurred vision accompanied by floaters and spots, and the cognition impairment that is commonly called "brain fog." By the time I saw my primary care doctor on Tuesday, August 5th, I was calm, clear-eyed and alert, though still feeling the insistent presence of the more diffuse symptoms. 

My doctor greeted me and asked me to tell him what was going on with me. As I began to explain what had transpired over the past 2 months of my life, it became apparent to us both that he was operating under a very different impression of what had taken me to the hospital three days earlier. He said, "The ER physician diagnosed you with acute fatigue, but you are telling me something very different from that." 

"Yes, I know. He obviously wasn't listening very carefully," I replied. "He wrote on his report that there was 'no headache present at this time,' but searing migraine was one of my chief complaints! Also, he reported that the rash I developed around the insect bite 'lasted 10 days' but I told him that it took about three weeks to heal." 

I continued to explain to my doctor all of the gross and subtle symptoms that lead me to conclude that I was in the throes of a Lyme infection, and he appeared to listen quite intently, occasionally asking me to clarify or expound upon certain details. After I finished telling him my full story, including how quickly I had responded to the antibiotics, he shared with me the results of my blood tests for Lyme, as well as the results of my Complete Blood Count, Thyroid Stimulating Hormone and C-Reactive Protein tests. 

I had spent the better part of the past three days, while not sleeping or lying curled up in a painful ball, extensively researching Lyme disease online, and talking to people who had either had it or knew others who did. I was well aware of the inadequacies of the 2-tiered testing system that is used to screen for the presence of antibodies to the Lyme-causing spirochetes called Borrelia burgdorferi, so I was not surprised to learn that my ELISA test (the first tier) had come back negative. I said to my doctor, "I think we both know that the ELISA is not a reliable way of diagnosing Lyme disease. Even the CDC states on their website that Lyme is diagnosed clinically, not by blood test." 

My doctor quickly responded, shaking his head, "The ELISA is a highly sensitive test. It would seem to me that if you had been infected two months ago, your body would've mounted an all-out assault against the bacteria. We see no sign of that in your blood work." 

"That's not true," I countered. "My white blood cell count is low, you just said so yourself, with low absolute neutrophils and high lymphocytes. This suggests a bacterial infection." 

"Yes," he stated, "but this also happens in viral infections. My sense is that you have a virus. Still, we'll keep you on the antibiotics, just in case." 

Quickly frustrated, I said, "If I had a virus, I would not have responded the way that I have to the antibiotics. It seems very clear to me that this is Lyme. I don't know why it's not clear to you. In fact, I may even have other, tick-borne co-infections, which we both know is quite common." I sighed. "This is crazy." 

He maintained his composure, turning the conversation to how we would proceed, clearly interested in moving on to his next patient. He suggested that I take a 21-day round of the Doxycycline, and then return two weeks after that to have more blood drawn so comparative testing could be completed. I countered with my well-researched opinion that I should take the Doxycyline for at least 28 days, and have my blood drawn on the Monday immediately after completing the treatment. We agreed on that, I requested printouts of all of the records generated by the ER visit and our follow-up, and then we shook hands and parted. At reception, I scheduled my follow-up appointments with an exceptionally helpful and warm receptionist and picked up my printouts. 

Back home at last, I lay down, feeling frustrated and very scared that the one person my insurance company will pay to treat me has very limited ability to help me. This is all-too-common with Lyme disease. Though it has been running rampant in the US for more than 30 years, and is epidemic in the Northeast, where I live, doctors are barely equipped to diagnose and treat this complicated and life-altering disease.  

It doesn't take long for a person grappling with Lyme borreliosis, or what is commonly called Lyme disease, to discover that they are caught in the crossfire of a war. There are powerfully divergent interests at work in the area of Lyme disease: the government agency that sets the standards for testing and treatment, coupled with the IDS (Infectious Disease Society), and the "Lyme Literate" caregivers in the communities where astonishing numbers of people are experiencing the debilitating effects of the illness. Caught in between are people of every walk of life who, most often, fall mysteriously ill, get tested for Lyme, are told by their disempowered doctors that their tests are negative and that what they are feeling is "all in their heads,"and then go months or years before they learn that what they feared all along was true. But, by then, the stealthy and complex bacteria have adapted to their host, burrowing deep into aqueous humor, collagen, and soft tissue, and wrought irrevocable damage. 

The Centers for Disease Control, the CDC, promulgates very specific diagnostic and treatment protocols for Lyme borreliosis, protocols which restrict the ability of the conventional medical community's ability to adequately diagnose and treat it. However, doctors that do not act in strict accordance with these protocols, citing them as being too restrictive and not allowing for the variables that must be considered when diagnosing and treating so adaptable and individuated a disease, are called out as rogues or quacks, and their standing as medical professionals is threatened or stripped from them. This causes a great many in the medical field to fall in line, but it also forces others out to the fringe, creating a rift within which the Lyme patient finds it difficult to know who and what to trust or believe in. 

As I previously stated, blood testing for Lyme borreliosis is done in a 2-tiered manner. The first tier is the ELISA (Enzyme Linked Immuno-Sorbent Assay) method, a technique used to determine if a certain substance is present within a sample. In this case, lab technicians are looking at a blood sample for a specific level of antibodies to Borrelia burgdorferi. Variables to consider are the person reading the test's experience with this particular spirochete bacteria, and the stage of infection at the time of testing (too early and there will not be enough antibodies in the sample, too late and the bacteria will have "cloaked" themselves and hidden from body's immune system). 

If antibodies to Borrelia burdorferi are found in a blood sample to be of sufficient quantity to warrant a positive ELISA, the second tier of testing is performed, as a means of confirming the results of the first. This test is called the Western Blot, which, in very simple terms, looks for two classes of antibodies to the bacteria and registers them on bands that look much like barcodes you see in a grocery store. The CDC requires that at least five very specific bands register positive for the presence of the antibody for the Western Blot to be classified, overall, as positive.   

If the blood sample contains less than the CDC-established range, the test result is negative and no further testing is done, even if a patient demonstrates clinically that they likely have Lyme borreliosis (i.e. via a comparison of current symptoms to one's medical history, coupled with the possibility or likelihood that they were exposed to a vector or visited an endemic area). This means that doctors all over the nation are unable to report obvious cases of Lyme borreliosis to the CDC, and suggests that the CDC's numbers are woefully skewed. While the CDC maintains that there are approximately 20,000 new cases of Lyme borreliosis in the US every year, the work of the medical community, coupled with the science concerning the variability of how the disease spreads, suggests, by extrapolation, that the number is approximately 10 times higher. I don't know why the CDC creates these impediments to proper diagnostics and treatment, or allows for their numbers to be so skewed, but I can't help but think that something is seriously wrong with the situation. 

Over the past three weeks, I have had opportunity to talk with countless dozens of people about Lyme disease, and have heard the same story of misdiagnosis and lackluster treatment repeated again and again, from those who have had the disease or have it currently, those whose friends or family members have had it or have it currently, and those who work in the medical community and see the reality of what is happening in my community. We have reason to be deeply concerned, and I'm certain that the government, the CDC, doesn't want us to panic.  Yet, it's very frightening. Borrelia burgdorferi is all around us, harbored most commonly by ticks, but also, less commonly, by biting flies and mosquitoes. It has been documented to pass from infected mother to fetus, and has been detected in breast milk, semen, tears, and urine. The "telltale" bullseye rash is experienced by less than half of those who are infected with the bacteria, and many people never experience a rash at all or even discover an insect bite. I'm not making this stuff up; all of this data is available to the studious. If the general public, and our medical caregivers, aren't better informed and empowered as to how to prevent, recognize, and treat this disease, the numbers of the infected will only continue to exponentiate. 

So, how do we respond to this genuine, escalating threat to our collective health with the kind of force that will bring about change in how the CDC controls the testing and treatment protocols that are leading to an unchecked epidemic? We don't want to be rushing to the ER every time we find a mosquito bite, but we also don't want to lose our health, and maybe our lives, to something we possess the scientific capability to fight. 

I don't have the answers right now, only questions I'll have to answer as I continue on this journey. But, I do know this: I can't in good conscience fail to do my best to underscore, for as many as will listen, the seriousness of Lyme borreliosis, both as the fastest-growing vector-borne disease in the world and, consequently, a foe most worthy of our attention.