MY STORY

lymebrainpostIV

“It’s no use going back to yesterday, because I was a different person then.”

– Lewis Carroll, Alice in Wonderland

I grew up in the Pine Barrens in New Jersey where people get a lot of tick bites and don’t think too much about it. I made it until I was 33 years old before Lyme disease and two other tick-borne bacterial infections took over my body without detection. I have a case of chronic Lyme disease, more formally referred to as neuroborreliosis, which means that I have been infected with the Lyme disease-causing bacteria Borrelia burgdorferi for so long that it was able to fully colonize all of the tissues in my body, including my brain. Borrelia burgdorferi is a type of bacteria called a spirochete, which is described for its spiral shape, which it uses to literally corkscrew into tissue. It is passed into the human body through the bite of a deer tick, or black-legged tick. When it develops into an infection in the body, it can be referred to as borreliosis, but is much better known by the more popularized name, Lyme disease; the name given to the set of symptoms that people classically present with when they have become infected with the bacteria. It was named after the coastal Rhode Island town of Lyme where it was first pinpointed as the cause of a childhood arthritis cluster, made known by a concerned mother. An example of a more widely understood and acknowledged disease that is also caused by a spirochetal bacteria is Syphilis. Caused by the spirochetal bacteria Treponema pallidum bacteria, it has a great deal in common with Lyme disease, especially when it comes to the neurological symptoms that occur as a result of late-stage infection. And hence the neuro part of the term neuroborreliosis. The term Lyme disease is often used as a blanket term to describe someone that is actually infected with multiple tick-borne bacterial infections. This is because it is actually quite rare for a human to contract only Borrelia burgdorferi from a tick bite. There are other pathogens, which are just as common as Lyme disease with similar sets of symptoms that can be just as severe. It would be like drinking dirty water from a river and believing that E. Coli was the only bacterial pathogen in that water. Instead, it is simply the most readily recognized by the public, thus it becomes the default spokesman for all water-borne pathogens. It just gets better press. The same is true of Lyme disease when it comes to tick-borne pathogens.

I have no idea when it started, but I do know exactly when it became unbearable. By the time I figured out that I had chronic Lyme, I had also figured out that it is much more than just a bacterial infection. It is the elephant in the room. It is the rock, that once flipped over, reveals many more little rocks that need turning over, each with its own implication. Just think of a mosquito in a windstorm when you imagine having a productive conversation about Lyme disease with your doctor. Most doctors do not believe that a Borrelia infection can become chronic. It doesn’t help that that we have no reliable diagnostic tests that can detect Borrelia burgdorferi in the body. It is incredibly adept at avoiding detection. It reminds me of the thought experiment; if a tree falls in a forest and no one is around to hear it, does it make a sound? I always reasoned that the answer would be yes, but now I imagine it differently. If someone develops Lyme disease after a bite from an infected tick, but there is no way for them to be diagnosed as having it, then they may as well not have it at all. Borrelia burgdorferi has been identified in every one of the 50 United States and in over 80 countries worldwide. Ötzi, a 5,300 mummy found in the Alps, tested positive for Lyme disease (I want to know what test he had!). There are 100+ strains of Borrelia burgdorferi in the U.S., 300+ worldwide, and five different subspecies (Global Lyme Alliance). It is presented to the public as a something that is easy to diagnose and easy to treat: tick attached for 36-48 hours, bulls-eye rash, immediate symptoms that mimic a bad flu, 2-4 week treatment of doxycycline, happy face. My experience has been the polar opposite: tick attached for 15 minutes, no bulls-eye rash, no immediate flu-like symptoms, only pain under rib cage and urinary tract infection, 6 months of minocycline and 6 months of alternative therapies, still sick. My experience shows the reality of the situation; this thing is neither new nor easy to treat and diagnose, but old as Babylon and evil as Hell (Repurposed Edward Abbey quote).

I became overwhelmed with both a curiosity and an anger for what was happening to me. Over the past year my health had been declining. My body was weakening and I could feel my muscles tightening as if someone was cranking a winch with increasing intensity. Burning pain was creeping its way through my muscles and joints. My nerves were misfiring, which caused random parts of my body to feel like I was being stung by biting flies. When it got severe, it felt like I was on fire. At night my legs burned, my heart raced, and my skull was filled with a loud vibration like the sound of a helicopter just overhead. I was having intense nausea, which made it almost impossible to be in a car, look at my computer screen, or sometimes even to stand up. My body was becoming so weak that I struggled to hold up my torso while seated and I needed to brace myself against a table or chair in order to remain standing. I would become dizzy and out of breath after walking from one side of our small house to the other. Panic attacks, crawling skin, the sweats, dissociation, chest pain, twitching, shortness of breath, extreme brain fog. Some nights I thought I was dying and it was just as well. My body was being overtaken. It was as if I was being slowly erased, and in the most painful way imaginable. I couldn’t look at myself in the mirror. I mourned for the life that I once had; a life that I had clearly taken for granted. I was terrified, desperate, afraid of the next day, afraid of the next moment. I felt like I was face to face with my own death.

I tried to explain my symptoms to doctors, but each visit lead me to another dead end and muddied my path further. There were specialists for everything, but no one was able to correlate all of the symptoms together. Many times it felt like my words were falling on deaf ears, not from a lack of concern (although I encountered this as well), but more from a kind of bewilderment. They didn’t have the tools to recognize that my body was crumbling under the pressure of late-stage, systemic infection. Lyme was never mentioned as a potential cause. If you Google “Lyme disease,” do not expect to find accurate information. Lyme is the hot potato at the doctor’s office. You’d probably get further if you told them about how you are the next Jesus Christ. At least then they’d have to help you. People live with this for years, deteriorating, suffering, waiting for some diagnosis. They are locked into a dance with their doctors around the elephant in the room, all while an ancient and sophisticated bacterial infection invades every red blood cell and spreads to every organ in the body, especially the heart and brain. Many people never get a diagnosis, or they get one that is a dead-end. Close, but no cigar. Doctors are becoming increasingly bound by the guidelines of insurance companies, the latter of which could care less about public health or about the most recent research available to us.

You may ask yourself, how is it that something so big can be swept under the rug, and with such apparent ease? How did we get here? At thirty-five years old in a body that feels more like it’s eighty-five, this question haunts me. I think part of the answer is that it’s been hidden in plain sight. It is called other things like fibromyalgia, chronic fatigue syndrome, Crohn’s disease, MS, Alzheimer’s, Parkinson’s, ALS, childhood arthritis, autoimmune disorders, etc. We have been conditioned to not believe our own bodies, to put our lives in someone else’s hands; someone who is following a set of guidelines written by, and for, insurance companies. Chronic Lyme doesn’t appear in the guidelines, so it is widely ignored. Doctors would need to specifically ignore the guidelines that they are bound to follow in order to bill insurance companies for their services. In fact, their licenses are often challenged if they try to treat chronic Lyme symptoms with extended courses of antibiotics. This often makes it impossible for Lyme-treating physicians to accept insurance. Patients are then forced to pay out-of-pocket for life-saving treatments, which leaves many bankrupt because they are too sick to work. Because doctors know that they are at risk of both losing their licenses andbeing sued by insurance companies, many will not touch a Lyme patient with a ten foot pole. The Lyme patient becomes the hot potato that no one wants to touch.

I could have easily been diagnosed as having a laundry list of syndromes and conditions, including fibromyalgia and chronic fatigue syndrome, along with a host of other conditions for which the cause remains unknown and for which there are no viable treatments plans. The only difference between me and someone with fibromyalgia or chronic fatigue syndrome is that I know the root cause of mine. If you dig just below the surface, you will find that many commonly-diagnosed conditions have no known cause. Just because there is a name for something does not necessarily mean that anyone has a clue about its root cause. These conditions are simply clusters of symptoms that are seen frequently enough by doctors that they need to come up with names for them. Alzheimer’s, Parkison’s, and Crohn’s disease are all examples of diseases that have been named after the person who first recognized them as commonly-appearing sets of symptoms. Other conditions are named using a description of your symptoms turned right back at you in Latin: MS (multiple sclerosis), ALS (amyotrophic lateral sclerosis), and fibromyalgia are all examples. The definition of fibromyalgia has its roots in ancient Latin and simply means, pain in the muscles and fibrous connective tissue. ALS, or Lou Gerrig’s disease (amyotrophic lateral sclerosis), also derived from Latin, means muscular atrophy (amyotrophy) of, at, toward, or from the side or sides (lateral), with abnormal hardening of body tissue (sclerosis). These diagnoses are just thin veils used to create an illusion of certainty about what is causing different types of chronic illnesses. Once it is named, your doctor can give you a diagnosis that is billable to insurance. It’s something that insurance companies will accept. They absolutely do not accept chronic bacterial infections like Lyme disease as valid diagnoses because it is their claim, based on outdated research, that they simply don’t exist.

There is often a perfect overlap between the descriptions of each one of the above-mentioned conditions and the description of someone suffering from chronic Lyme disease and co-infections. The severity of symptoms simply depends on how long you’ve been infected, and with which bacteria infections. Someone who is diagnosed as having ALS or Alzheimer’s, for example, has symptoms that are often indistinguishable from someone who is experiencing the neurological effects of late-stage tick-borne bacterial infections. Similarly, someone who is diagnosed as having fibromyalgia or Crohn’s disease has symptoms that perfectly describe the experience of an individual whose body is struggling to cope with chronic bacterial infections at various stags of infection. The list of these conditions goes on and on. In a nutshell, they are all red herrings. Once something is named, it breaths life into it and it starts to take on a life all its own. They are handy labels for doctors to stick on patients and for patients to wear as a badge. It reminds me of a gardener, slaving away in the hot sun each day, working continually to pull out just the tops of the weeds without ever removing the roots. You will keep them at bay only for a time before they start to take over again because you have never looked for the roots. There are a shockingly high number of commonly-diagnosed diseases and conditions for which the root cause remains unknown. The moment that someone is diagnosed as having a particular disease or condition, the search for the root cause can be abandoned. Once you have a label, your insurance is billed and you can start therapy, which consists of an endless deluge of pharmaceutical medications used to mask your symptoms. Insurance companies and drug companies are happy, and as we all know, we are living and dying for their benefit. Tick-borne bacterial infections and the wider world of microbiology continues to be widely ignored as a central cause of chronic pain and illness. Understanding our bacterial cousins and how they operate in our bodies will be the only way to fully understand human disease. After all, half of the human body consists of microbes, and we know little to nothing about how they function, or dysfunction, in the body.

Ticks pass much more than just the Lyme-causing spiral-shaped Borrelia burgdorferi bacteria. It is extremely uncommon to get a tick bite that transmits only Borrelia burgdorferi into the human body. There are a multitude of other bacteria and viruses that are also passed through tick bites. They are referred to as co-infections, which makes them sound like they are secondary to Lyme and aren’t as severe. In fact, these microbes can cause infections that are just as severe as Lyme disease, but are even more widely ignored. It is basically unheard of that any doctor would test for these infections, despite how incredibly common they are. Blood tests revealed that along with my chronic Borrelia infection, my immune system was also battling Bartonella henselae. Commonly known as Cat Scratch Fever, it is extremely common to pick up this infection from a tick bite. The Bartonella organism is particularly virulent, which makes it quite resistant to treatment. More routine bloodwork showed that I was also infected with Mycoplasma pnemoniae, the smallest bacteria of which 4,000 can fit into one red blood cell. There are many other similar parasitic microbes that people are commonly exposed to when they get bitten by ticks or other biting insects, including viruses. The Powassan virus, a relative newcomer on the scene, is transmitted within fifteen minutes of a tick bite and it is usually fatal! Additionally, there are over 100 known strains of Lyme in the United States and around 300+ worldwide. There are also 5 subspecies of Borrelia burgdorferi that have been identified (International Lyme and Associated Diseases Society – ILADS). Lyme disease is simply the tip of the iceberg.

I look fine on the outside, great even, but my body has turned into something that I fear. The pain can overtake me. It is nightmarish, except unlike a nightmare, it doesn’t end. It started one day and never stopped, like having a chronic flu. I am never comfortable. I am never at rest unless I have dosed myself thoroughly with a whole list of pharmaceutical drugs. I can’t work. I am only able to leave my house after dosing myself with medications. I never thought that at thirty-five years old my medicine cabinet would resemble that of someone in their seventies. In a way I am lucky because at least I know what I have. Many do not know and they continue to deteriorate as a result. Lyme and other tick-borne bacterial infections have effects that can become severe, especially if left untreated. People often live in silence suffering from pain, anxiety, and depression. If you know what to look for, Lyme is all around us. The problem is that we’re not looking for it because we don’t know what we’re looking for. If you’ve been bitten by a deer tick, it is likely that you were exposed to the Lyme-causing bacteria or to other infection-causing bacterial organisms. If you’ve had multiple tick bites, then you’ve been exposed multiple times. The Center for Disease Control (CDC) estimates that there are around 300,000 new cases of Lyme each year in the U.S. alone. This number is likely much higher, considering the fact that the Borrelia burgdorferi organism is so difficult to identify in the human body. In comparison, CDC estimates show that in 2016 in the U.S. there were just over 5,100 new cases of Zika virus and slightly over 2,000 new cases of West Nile Virus. At the height of the AIDS epidemic during the mid-1980s, the annual number of new cases peaked at 150,000.

Many people with chronic Lyme disease choose not to talk about it, or like my sweet mother, they minimize it, so that other people won’t worry. Many are afraid to talk about it because it makes them sound like an obsessive, compulsive lunatic. I can’t even blame anyone for thinking that. It does sound crazy. I wouldn’t have believed it. Lyme is seldom recognized for its debilitating effects. People often suffer invisibly. Because of the vast network of misinformation surrounding this stealth bacterial infection, Lyme patients are inevitably compelled to take a defensive position, justifying their suffering to an endless merry-go-round of  people with blank looks on their faces. I have found people to be quite compassionate and concerned when I explain my situation to them, but it is almost always the first time they have heard such a story. It sounds more like the plot of a sci-fi novel where everyone is becoming infected with some type of terrible, zombifying, super strain of bacteria that the government can no longer cover up. Truth can actually be stranger than fiction.

I have lost trust in my own body and in the medical system that I naively assumed would help me. I found out that most doctors do not acknowledge the existence of chronic Lyme, and in fact, will specifically steer you aware from the topic. As someone trained as a research scientist, this shocks me. I fear that we view our bodies more like containers with separate compartments than the way that they actually are; complex, interconnected systems. The ecosystem within our bodies is a just a microcosm of the greater web of life that we are all a part of. When one system is disrupted, a signal is sent out. If we don’t acknowledge the first signal, or we misinterpret it, our bodies send out another signal, and then another. Each signal acts just like the canary in the coal mine. Misinterpreting them can have disastrous effects. People with chronic Lyme have no way of interpreting the signals themselves and they are misguided at every turn. There is a cause for everything even if we haven’t identified it yet. It is dangerous and reckless to assume otherwise. Most of the time, the only way to get diagnosed with chronic Lyme is to dig deep into your pockets and search out the right doctor who will test you exhaustively with a barrage of expensive blood tests that aren’t covered by insurance. It is not uncommon for people to become bankrupt in a desperate attempt to become well again.

I’m a digger, a researcher, a skeptic, and I don’t have faith in the medical system. I fear that if not for these qualities, I would be circling the drain right now with so many others. Lyme disease is not just a bacterial infection that does harm to the body. It is also a disease of the culture, born from decades of enmeshing peoples’ health and welfare with a profit-driven medical system. Quick-fix pharmaceuticals have become the golden standard of care. Why look for the cause when we can treat the symptoms?

You can read my INTRODUCTION and check out my BLOG ENTRIES.