On 8/13/14, I was leaning against a wall in a second doctor’s office, too exhausted to even hold my head up. I was dizzy and short of breath with recurrent heart palpitations. I waffled between sweating profusely and shaking uncontrollably from chills and my head was absolutely killing. The first doctor had been “impressed with my degree of illness” but said it must be a virus as my Lyme test was negative. I explained to doctor 2 that I had recently taken a tick out of my stomach, and that I was becoming sicker. Due to yet another negative Lyme test, and chest x-ray, he also diagnosed a virus and said, “you just have to let it run its course”. It has been running its course, right over my life since then. I live in Wilbraham, Massachusetts which is an endemic region for Lyme disease. Since I had removed the tick AND was highly symptomatic, BOTH doctors should have treated me for Lyme according to current treatment Lyme Disease (LD) protocol.
I have learned a lot since that awful day. My personal journey to regain my life is full of few ups and far too many downs. I am not a MD but I do hold a Doctorate in both Education and Psychology. I understand knowledge is power and so I began to research LD and to seek a doctor who could help me feel half way human again. Why now, after 4 years, am I just joining the growing Lyme fight? In the past year, 3 experiences have proven to me just how widespread, costly and harmful the mainstream medical community’s LD related ignorance is. First, I attended a local Infectious Disease (ID) doctor’s seminar to a group of nursing students about the identification and treatment of tick-related illnesses. Much of his information was no longer in line with current research or accepted LD guidelines. I had to bite my tongue as he spoke condescendingly about “Lyme Literate Doctors (LLDS) prescribing multiple antibiotics (ABX)” and “patients who thought they still had LD after a short dose of ABX”.
Then, I read an interview with another ID in my local paper who was attempting to educate parents in my community about LD. Some of his outdated information was very misleading and could do more harm than good by creating the false illusion that LD is easily diagnosed and treated. He discussed how, “In most cases, the diagnosis is not challenging, especially if patients are seen in the early stages with the classic red rash.” Then he talked about how “prolonged courses of antibiotics (2-4 weeks) are no more effective than relatively shorter courses of treatment.” And that if you are not certain you removed a tick successfully, “you should only seek medical attention if the tick bite develops redness, swelling or tenderness to touch.”
The last straw was my Jessica’s recent adventures with a local psychiatrist. Jessica had been experiencing many symptoms of LD for the past 2 years or so, but she did not think it could be Lyme because she did not remember any tick bite or rash. When she began experiencing debilitating panic attacks. I nagged her AGAIN about LD, but since she had tested negative also, she felt it must be something else. Finally, after paying therapy, increasing doses of psych meds and even hypnosis failed, I paid her expensive medical bills so she could go back to see my local LLD. My instincts as a psychologist, a Lyme sufferer, and a mom had screamed that she needed to be on ABX. My daughter, the most social person I know, had been reduced to working from home and barely leaving her house. All of her anxiety and panic attacks ended within a 2 weeks of ABX treatment for LD. Most disturbingly, when Jessica told this local psychiatrist that she was better and ready to return to work, he actually told her that “Lyme does not cause panic attacks”. He even advised her to up the psych meds even higher because she must be suffering from PTSD for some unknown reason!
I am just one person. My family alone has had experiences with local primary doctors, neurologists, immunologists, rheumatologists, dermatologists, ophthalmologists, dentists, gastroenterologists, urgent care and emergency room doctors, cardiologists and mental health professionals who all missed the diagnoses and allowed the disease to progress to the later, more debilitating stages. We have paid for every blood test you can imagine as well as bone and skin biopsies, cardiac tests, MRIs and ultrasounds, x-rays and more. We have a lot of unpaid medical bills. We are not special. The cases where LD is diagnosed quickly and treated effectively are rare. They do exist but everything must go just right For example, my husband and son both had LD in recent years. They are both avid runners with strong immune systems. Thankfully, I picked up on the symptoms and found the “classic bullseye rash” they were lucky enough to have. However, my husband’s bullseye was on his backside where he never would have seen it. Though he exhibited classic symptoms AND the rash, he still tested negative for Lyme. Luckily, his doctor treated according to the new research I nagged about and prescribed 6 weeks of ABX.
My family’s experiences are a small but representative sample of a world-wide LD population. They show that LD is common-we ALL had it. They also support the current research regarding the 50% fallibility rate of current LD tests and the need to diagnose patients clinically. Most people do not win the Lyme lottery, like my husband did. Sadly, it is more common for people with Lyme travel the same long winding path of Lyme hell that my daughter and I are on. Most people see an average of at least 5 doctors before they are diagnosed correctly. Worse yet, the very sick patients are often subjected to doctors who will actually roll their eyes at them and diagnose mental illness or say they are hypochondriacs. These patients continue to feel progressively more frustrated and more ill and incur great expenses trying to find out why their lives have become unmanageable. It scares me to think of how many local doctors have told me that I am “not following current medical thinking” in my Lyme treatment. As an educated person who has done a ton of research, I knew better than to listen to them.
My local western MA “mainstream” doctors are also a representative of the larger population and are out of the current LD information loop. I researched the history and related legislation necessary to understand why this is happening. The Infectious Disease Society of America (IDSA) put out guidelines for the treatment of Lyme and other tick diseases back in 2000. These guidelines were placed on the Center for Disease Control (CDC) website to be used as a basis for research-not treatment. They were also placed in the National Clearing House (NCH), the federal data base that does provide treatment information to doctors and insurance companies. Doctors have used these sources to gain information to treat their patients. The timeline from 2000 to now has had lots of twists and turns but I will give the Reader’s Digest version. Basically, the IDSA should have updated their guidelines to reflect the current research and information about LD (and coinfections) long ago. They did not, and they were REMOVED from the NCH in February of 2016 because they no longer met the needed criteria to be considered valid.
The ONLY CURRENT guidelines listed for LD in the NCH information were put out by the International Lyme and Associated Disease Society (ILADS) in 2016. The ILADS version defines 3 stages of Lyme, including Early, Disseminated, and Chronic (a diagnosis that is still being questioned today by mainstream doctors). ILADS emphasizes how critical it is to patient health that doctors CLINICALLY diagnose LD and use their educated judgement to treat individuals based on possible tick exposure, symptoms, and responses to treatment. Today, the diagnosis and treatment of LD is controversial due to this disparity that exists between the outdated ISDA guidelines and the current ILADS set. This world wide effort to define LD parameters filters down to each US state. Many states are managing by passing new laws that reflect the readily available research on LD. These laws are related to protecting the doctors who prescribe as well mandating the insurance coverage of extended ABX therapy for patients who need it. The IDSA is also FINALLY updating their own guidelines.
Here in Mass, this effort is to get current is failing. In 2013, Massachusetts’s Commission on LD called it a “staggering burden for families and the Commonwealth” and recommended a “campaign to educate and promote awareness in the medical community and mandatory coverage of LD treatment”. The wheels of this Lyme Disease legislation are SLOWLY rolling over those of us who contract Lyme Disease in my state. I tracked this legislation and four years later, Bill S.1255 to “study the feasibility and best practices for statewide education and awareness programs to prevent the contraction of Lyme and tick-borne illnesses” has become Study Order S.2422. This “order relative to authorizing the Joint Comm. on Public Health to make an investigation and study of certain Senate documents related to public health matters” has been stagnant since and nothing has happened to further the Lyme education initiative. Oh wait, I lied. Governor Baker declared May Lyme Disease Awareness Month. What a joke.
Nationally, the outdated ISDA ideas clearly still permeate medical ideology and practice as well. The CDC just released alarming statistics regarding skyrocketing tick-borne illness rates. This critical misinformation fog is beginning to dissipate, but far too slowly. Living in Massachusetts puts us ALL at much higher risk for tick related diseases that make people very ill. Research shows that up to 50% of people infected with LD typically also contract 2 or 3 coinfections such as Babesia, Bartonella, Anaplasmosis, and Ehrlichiosis. Researchers are also discovering MANY new tick diseases such as Myamoti and the Powason Virus on the Cape. A tick only needs to be attached for 15 minutes to pass the deadly Powasson virus to a human host. Here in Mass, we are considered “ground Zero” for Babesia and are at the highest risk level for tick illness so education for the public and doctors remains critical. However, we are not unique. New Jersey and other states are discovering new and dangerous diseases as well.
I have personally experienced this huge gap between the updated diagnosis and treatment protocols and the ways local doctors are managing patients. I have listened to condescending doctors dole out misinformation and mock local LLDS while they rolled their eyes. I contend that this inappropriate behavior is unprofessional at best and life-threatening at worst. As doctors take an oath to do no harm, local doctors in all fields need to become more educated about what the newer research is proving about LD and other infections. Most recently, I was having changes with my vision and eye pain. An ophthalmologist rolled his eyes when I discussed my LD and said, “There is nothing medically wrong with you that could be causing this. It is winter. You have dry eye. Lots of people have dry eye in the winter. Here are drops.” My LLD prescribed Doxy for Rickettsia and my vision was restored to 20/20. Thank God I knew enough not to listen to “the expert” spout his alternate facts LOL.
So, what is some real news that our current Science phobic federal lawmakers need to know? First, updated information reflects that Lyme is NOT easily diagnosed in most cases. Sadly, less than 50% of patients get the typical, easily identified bullseye rash. (Most patients do not even know that they were bit due to tick’s injecting anesthesia first.) When I pulled my tick out, it left a bump resembling a mosquito bite. Secondly, doctors need to stop perpetuating the idea that ineffectual blood tests are necessary to diagnose Lyme and other tick-borne diseases. Research indicates that an astounding 30-50% of tests provide false negative results and they can’t recognize the different tick-related bacteria and parasites that are emerging. Thirdly, current research proves that LD is rarely treated easily. The Lyme bacteria alone actually changes into 3 different forms, often requiring different combinations of ABX to treat them all effectively. Studies also prove that the bacteria DO persist after treatment is stopped in at least 20-30% of patients treated with only a short course of ABX.
New ACCEPTED guidelines indicate that LD is often discovered too late or misdiagnosed in the US allowing it to manifest into serious complications. LD and coinfections can affect the heart (Lyme Carditis), the mind (depression, panic attacks, anxiety, and other psychiatric and cognitive impairments), muscles, joints (arthritis), immune systems (I need weekly IGG infusions now), digestion (IBS) hearing, vision, and too many other systems to list. Coinfections and each person’s health status will further impact how LD manifests itself and one’s treatment needs. A 2014 CDC study found that people with chronic Lyme Disease have a worse quality of life than other chronic illnesses including congestive heart failure, diabetes, multiple sclerosis and arthritis. Finally, ILIADS just reported that parasites, worms mostly, should be considered the number one coinfection for Lyme patients. Research shows the worms create a biofilm and live in harmony with Lyme bacteria while protecting it from our immune systems.
There are too many LD concerns for me to address in this one blog without causing you to tune out if you haven’t already! But, I truly feel that people need correct information to avoid, recognize and treat this life altering illness. In contrast to the laid-back attitudes being perpetuated by some doctors, I say people need to be hyper vigilant about these tick related prevention and diseases. People need to educate themselves on all possible symptoms and seek treatment with ANY tick bite or symptoms. People need to research and understand treatment information. For example, research shows that LD bacteria have a life cycle that requires longer than 2 weeks of ABX ALWAYS. Bacteria can lay dormant in protective biofilms, so they can re-emerge after short term ABX are out of system. People need to know that the ACCEPTED treatment protocol involves a clinical diagnosis for these infections, based on both symptoms and geographic locale and they cannot allow doctors NOT to treat based on results of proven unreliable blood tests.
Ticks are not going away. They have spread to most areas of the world and not dying off due to warming climate trends. A higher number of the ticks are infected with the growing numbers of possible diseases and compromised immune systems. New research is indicating that LD can be transmitted through pregnancy as well creating developmental delays in children. LD is so common that almost everyone knows someone like me who is battling its disabling effects on a daily basis. The world is slowly becoming more aware and laws are changing everywhere to reflect the new research. But currently in the US, the CDC still lists the outdated, internationally UNACCEPTED guidelines, and the ISDA still perpetuates them. Many patients are struggling to find a diagnosis for their debilitating symptoms and are made to feel like it is all in their head. Friends and relatives get sick of dealing with Lymies and some even leave. Lymies are buried by medical bills because even if they are lucky enough to finally get the right diagnosis, many insurance companies won’t cover the treatments. This ridiculousness needs to stop.
Positively, people do seem to be realizing how serious this epidemic has become. People around the world are suing government agencies AND WINNING to enforce changes. Obama helped to pass the 21st Century Cures Act in 2016 which includes funding for LD research. Congress has begun forming the Tick Born Disease Working Group that was mandated in the law. We must continue to advocate for this law given Trump’s administration often seems to view research as an unnecessary expense. In Mass, we advocated to pass a law related to insurance companies covering ABX in March of 2016. We all need to continue to be proactive with respect to our own health. It is up to each of us to add our voices and knowledge to the growing numbers of researchers, celebrities, doctors and organizations such as LymeDiseaese.org who are advocating for patient health and services.
As I said, ISDA is finally changing their guidelines and are looking at many of the studies I have referred to (see IDSA, Project Plan 2015). Sadly, they expect this process to take at least 2-5 more years. Given the number of people I believe they are making sicker daily, this is a travesty. There are at least 30-60,000 people annually who will progress to the disseminated stage of Lyme, and that number is based on reported cases only. I do not want you to be one of those statistics. The Under Our Skin documentary does a great job of showing the bullshit politics that have also kept many of us sick if you are interested.
My advice based on my own family’s experiences, is for you to get aware. Prevent tick exposure by wearing long sleeves and pants and bug spray with DEET. Research shows clothing treated with Permethrin repels ticks as well. Catchy homeopathic sprays etc. have not been proven as effective or as safe as research shows DEET to be. If you have had any possible tick exposure due to locale (basically all of us), pets that go outside, blood transfusions (Babesia), you need to be vigilant. If you experience flu like symptoms, joint pain, fatigue, severe headaches, eye issues, vertigo, heart palpitations, memory or cognitive issues such as getting lost or forgetting words, psychiatric symptoms such as anxiety or depression, get checked. Basically, if you have physical, neurological, emotional or psychological symptoms that are not going away or can’t be diagnosed, SUSPECT LYME. If you had Lyme in the past and were treated, but are still struggling with health issues, it is LIKELY still LD and/or a coinfection. Do NOT take false test results as verification that you do not have LD. Find a local LLD (lymedisease.org) who can help you. Learn as much as you can about the illness and treatment options so you can advocate for yourself. You will NEED to do this. Look online as there are many valuable resources and support feeds, though you need to be selective. Check out Madlymies.com for blogs, podcasts, videos and photos to help you learn and laugh through your Lyme journey. But most of all, do not give up or give in.