Reflections on Chronic Lyme Disease

Reported cases of Lyme disease have quadrupled in the United States since the 1990s. In 2017, there were 42,743 cases of Lyme disease reported to the Centers for Disease Control and Prevention (CDC). The scientists at the CDC who study the spread of diseases now say that the actual cases may be ten times higher than reported, or 427,430 cases. On average, this means there are about 1,000 new Lyme cases in the United States per day. -Newby, Kris. Bitten (p. 2)

‘On a most discreet (strictly need-to-know) basis, defense is to submit a plan by 2 February on what it can do to put a majority of workers out of action, unable to work in the cane fields and sugar mills, for a significant period for the remainder of this harvest. It is suggested that such planning consider non-lethal bioweapon, insect-borne.’— Task 33, Cuba Project, in “Top Secret Memorandum,” Brigadier General Lansdale, January 19, 1962 - Newby, Kris. Bitten (p. 59)

In a Nutshell

If I had to sum up the experience of chronic Lyme disease in a nutshell, I would call it the manifestation of everything that’s wrong with the current medical system.

When I was first diagnosed with Lyme three months ago, I was thrilled. After months of watching my hands deteriorate, my body stiffen, my gut reject most foods, and my body feel worn down by 10 am, I was relieved to have a diagnosis that encompassed everything I was experiencing. Before that, I had been told I had rheumatoid arthritis, carpal tunnel, and some form of irritable bowel syndrome by separate doctors. Though I had no (visible) tick bite, I heard from friends that Lyme was simple: take antibiotics, symptoms disappear. Six weeks of antibiotics later, my symptoms weren’t gone, and I was entering a different territory. I was now among the 20% of Lyme disease patients whose symptoms don’t go away with a single course of antibiotics and who are put into the very controversial “chronic Lyme” category.

First Problem: Chronic Lyme “Does Not Exist”

When my initial antibiotics did not cure me, I was warned that chronic Lyme was a “political” condition and that the medical community and government agencies (NIH, CDC) do not recognize its existence. I didn’t understand the meaning of this until I did a simple Google search. When I typed in “Is chronic Lyme disease…” the top search results were: “real,” “curable,” “fatal,” and “a real thing.” Similarly, on a recent trip to my doctor, I noticed a newspaper clipping by the reception area. As I read the article, I noted one section that perfectly described my symptoms: “…later stages of Lyme disease may present with arthritis, stiff neck, joint pains, muscular complaints, and extreme fatigue.” A paragraph down in the article began, “the medical community does not recognize the existence of chronic Lyme disease…”

The denial of chronic Lyme disease is in some sense a semantic question. The “causative” agent of Lyme is supposed to be bacteria called B. burgdorferi, and therefore doctors argue that if these bacteria are not killed with one round of antibiotics, or if the diagnostic tests were never positive for B. burgdorferi in the first place, then a patient is not dealing with Lyme disease. These doctors sometimes go the route of gaslighting patients: they tell them they have fibromyalgia or chronic fatigue syndrome (which are catch-all terms to describe their symptoms and imply that the condition is psychological). The practical effect of this non-recognition is that there are hundreds of thousands of patients left out in the cold and or forced into a medical underworld that does not take insurance and where information is fragmented and unverified. With this official dogma, doctors who do try to help patients using antibiotics are at risk of losing their licenses or becoming medical pariahs.

What many doctors seem too arrogant or ignorant to acknowledge is that 1. Lyme patients almost always present with multiple coinfections such as Bartonella, Babesia, and mold or heavy metal toxicity, so considering B. burgdorferi the “cause” is an incorrect simplification 2. When these infections have existed in the body for a long time, some of these bacteria are capable of going into cyst and intracellular forms that make them unreachable by antibiotics 3. Many Lyme patients don’t present with bullseye rashes (I did not) and because of the poor sensitivity of Lyme tests, may not even test positive for the disease, despite having the symptoms or living in a Lyme endemic area 4. There are over 300,000 (probably more) new cases of Lyme disease diagnosed each year and to end the conversation and shove all of these patients into other diseases categories is not just lazy and careless, it borders on evil.

I believe that the rising number of Lyme patients and the medical failure to diagnosis and treat them properly is a manifestation of a deeper problem: chronic Lyme is a systemic and multifactorial condition unlike most that doctors deal with. As I’ve unraveled Lyme disease through research and my own body, I’ve seen that it’s unbelievably complicated. Lyme patients often present with three or more coinfections that work together to wreak havoc and burden the immune system. Their bodies are stressed with chemical, mold, heavy metal toxicities, and emotional and financial stresses brought on by complications of being sick. Multiple Systemic Infectious Disease Syndrome (MSIDs), the term coined by Dr. Richard Horowitz, is a much better description of what’s actually going on than Lyme disease. It requires a delicate and thoughtful approach by a doctor to understand what’s wrong, how multiple conditions interact, and even in what order to treat them. In the current medical system, having that much thoughtful time with a doctor is practically impossible and unheard of. As the numbers of these cases balloon, there will be more and more pressure for real care for these patients. Though the cause of the recent surge of Lyme disease cases may be debatable- surburbanization bringing people closer to ticks, government biowarfare experiments gone awry (check out the book “Bitten,” by Kris Newby, mentioned in the quotes), or general environmental degradation stressing our bodies are all possible answers- people will continue to get sicker and demand better answers.

The Doctors Who Treat Chronic Lyme

I also feel that it’s worth mentioning the experience of working with Lyme specialists. As my primary doctor listed the names of a few, he added, “They all have different approaches. They’ve all seen thousands of people and their approaches are based on what worked for their own patients.” In other words, research was in early stages and treatment was trial and error. Over the next few weeks, I met two very kind, well-intentioned, and competent doctors, whom I’m still seeing. I also watched my savings dwindle by the thousands: despite having a “good” insurance, I’ve spent about $12,000 on doctor visits, tests (metal chelators, Lyme tests, general blood tests, other blood tests, thyroid ultrasounds…), and treatments. With my parents supporting me, I am lucky enough to have financial help, but I’ve felt my sense of independence evaporate and I’m angry that anyone else without that support would be on the way to bankruptcy by now. Though I truly believe the Lyme specialists I see are good, intelligent people doing their best for patients, there is no relief for the financial burden on patients, which grows with each test and supplement they order. The most frustrating, financially and emotionally, is not knowing how much longer healing will take. It could be months or years, but I don’t intend to ever give up on trying, because it means the ability to use my hands and do things I love.

Personal experience

At this moment, there is something wrong with almost every part of my body: my hands are still arthritic and freeze up in the cold, my muscles and neck are stiff, my thyroid is covered in cysts, my gut is sensitive to most foods, my gums need surgery, there is pressure behind my eyes, I’m exhausted, and my immune system is compromised so I feel like I’m always getting sick. And yet, I probably look the best I’ve ever looked: I have a pretty, doxycycline-induced tan and I’ve lost 15 lbs in the past three month from being on a restricted diet. When I see friends, some of them compliment me on my figure and if they haven’t talked to me in a long time, they assume I’m still working. I see them make milestones in their lives- relationships, marriages, work promotions- and I wonder when I’ll be back out again in the world rather than home in Connecticut. I looked at my calendar recently and cried- not because of all of the medical appointments I have, but because they are stretched out until January of 2020, making me wonder when I will ever be able to get out of Connecticut and medical care and get on with my life. I found that there’s a slow form of hell: it is feeling completely helpless, confused, losing control of your body, watching a medical and political system fail you and fail others even worse, and knowing that your life is passing by in the meantime.

The positive that I’ve noticed in the midst of dealing with Lyme disease is that people’s good intentions and emotions affect me much more strongly. After I got sick on a ferry this summer, one of the crew workers and a passenger both offered to help me walk and carry my bag. I looked into their eyes and thanked them. I can’t remember the last time I was so grateful to someone for anything. When I talk to my parents and Lyme doctors (some of whom are also sick), I see that they are in the middle of the same uncertainty that I am but I feel how much they care and that they are doing their best, and that’s more important to me than the result. When I run into an old friend or parent in my hometown, they almost always have something kind and helpful to say. Though I feel like I have less to offer than in previous months- I can’t give as much energy, time, interesting updates on life and work- I appreciate when someone wants to sit with me anyway. I’m grateful for coffee dates with friends and for every small act of kindness. I’ve found that there are many ways to be well despite not being cured.

Welcome! I write about aligning my life with nature, getting healthier every day, and defining the values and culture I find meaningful. Join me :)

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