Chronic Lyme Disease: The Appearance Problem

The appearance problem in question has absolutely nothing to do with vanity and everything to do with perception. Chronic Lyme Disease is a pretty cruel illness, not because of all the symptoms that accompany it, but because of the inconsistency. 

What is it, and Why is it Controversial? 

• Lyme Disease is, in simplest, least conspiratorial terms, a bacterial illness transmitted by the infected blacklegged tick. The bacteria are relatively unique: instead of releasing a toxin to harm tissues, their spiral shape (spirochetes, for those who care) allows them to "drill" into tissues, cartilage, and skin, causing an unending list of hard-to-place symptoms. The infected person's immune system mistakenly damages their own joints, nervous system tissue, and heart walls on the hunt for this stealthy bacteria. 
• No one denies that Lyme Disease exists. It is chronic Lyme Disease that is so very controversial. The CDC itself states that approximately 476,000 Americans are diagnosed and treated for acute Lyme disease each year ("Lyme Disease Surveillance and Data"). Chronic Lyme, however, isn't recognized. 
• The protocol for an acute case: a quick, two-week round of the antibiotic, doxycycline. Easy peasy, but not really. See, it might be that easy if you are part of the lucky 20% of people who actually get a bull's-eye rash (post-bite) to let them know they've been infected ("Types of Lyme Rashes"). That is, if you've been infected by a tick at all. Research has shown that insects other than ticks can harbor the bacterium. The Lyme bacteria (Borrelia burgdorferi) have been found in mosquitoes and flies, and, while the evidence of those insects' ability to transmit this disease is, so far, saying that it is pretty unlikely, it's probably not fair to fully rule it out (“Transmission of Lyme Disease by Mosquitoes and Flies"). In fact, around 20% of reported Lyme Disease patients are able to recall being bitten by a tick at all (Cameron). That means 80% of cases would really have no reason to seek early medical intervention until past the appropriate window. Finally, consider the last poorly studied way to transmit this disease: in utero. Just a year ago, when I was diagnosed, most sources agreed that this was impossible. Look it up now on any search engine, and you will find that it, though extremely rare, can occur (ask me how I know). 
• PTLDS. There is no acronym I dislike more. Post-Treatment Lyme Disease Syndrome is what the CDC has painted over chronic Lyme Disease. Oh, you got treated with the two-week course of antibiotics, and you're still experiencing extreme and horrible symptoms? PTLDS. You don't have chronic Lyme Disease because that is not a thing. So, if the CDC is so sure that chronic Lyme Disease does not exist, but that this syndrome does, what is PTLDS? Well, there is no real answer for what it is or what causes it. Your treatment plan for PTLDS? Symptom management. Maybe you can pay more to try acupuncture, ozone therapy, or weekly deep tissue massages for your "PTLDS," but you probably won't get any better. The best part of all is that this term is only about 20 years old, meaning you can't really get numbers or even know yet how people with this "syndrome" end up.
• So, sufferers say chronic Lyme is real and scary. Modern medicine refuses to acknowledge it. A 2023 article explains, "The analysis revealed that a patient’s positive blood test status did not influence how likely a doctor was to believe the patient had Lyme Disease. Doctors were no more likely to believe a positive blood test patient had Lyme Disease (79% unconvinced) than a patient who had not obtained a blood test (74% unconvinced)" (Fagen).  In simpler terms, the mainstream blood test that shows antibodies (specifically proteins the immune system creates to fight off the specific bacteria in a patient's blood) is almost completely ignored by the vast majority of doctors.

Why Doesn't Modern Medicine Acknowledge This Issue?

I don't believe I know better than medical professionals. That would be ignorant. However, I've spent my life around this disease, I've seen people lose family members who suffered from this illness to suicide, I've watched it tear families apart, and I'm dealing with it personally now. This disease is complicated and barely researched, and I have a hypothesis on why. 

• Standard insurance covers short-term, 14 to 30-day antibiotic courses for acute cases. However, if you are seeing a Lyme-Literate Medical Doctor (LLMD) who recommends long-term or alternative therapies for chronic Lyme, insurers will often classify these as "experimental" or "medically unnecessary" and deny coverage (“Why Isn’t My Lyme Disease Treatment Covered by Insurance?”). 
• Here is the unfortunate truth: Because chronic Lyme Disease is not widely recognized in major clinical guidelines, insurance coverage for treatment is denied. If insurance companies did treat every patient with ongoing Lyme Disease complications only with IV antibiotic therapy, it would cost those companies over 10.1 billion USD, according to an article written in 2018 (Zhang). Due to inflation and increasing cases, we're talking about 16 billion USD in 2026. Sure, that's not a crazy high number for insurance companies, but consider this: Chronic Lyme Disease impacts everything. Even if you do get better, you're looking at a seriously hard recovery. Combine long-term antibiotics and long-term illness, and you're looking at organ strain. My mother, who was one of the lucky few to actually get treated aggressively and made a near-full recovery after ~15 years with this disease, separately underwent a gallbladder removal, appendix removal, and a list of other procedures due to the strain chronic Lyme and treatment had on her body. These aren't rare occurrences, either, by the way. Imagine the mountain of money insurance would have to pay if the companies had to cover those things, too. 
• It's not just insurance companies either. Think about it like this: if mainstream medicine ignores chronic Lyme and the patient must see a LLMD that is not covered by insurance, those doctors make a lot of money on that patient. In this system, LLMD visits are out-of-pocket, and long-term care is financially burdensome for patients, with initial consultations ranging from $500–$1,200 (Frey). Insurance isn't taking care of any of that. this creates a situation where long-term care can become financially significant for providers who operate primarily outside of insurance reimbursement structures. These LLMDs are few and far between, and they are working with some of the most desperate and marginalized sick people you will ever see. 
• So my guess? Large institutions may have less incentive to invest in research or long-term treatment models for this monster of a disease. 

Symptoms

Unfortunately, chronic Lyme Disease can look like just about anything, which doesn't really help the whole diagnostic process. Here is a list of symptoms people with this illness experience. For the sake of bringing the reality of this to light, I will underline the symptoms I have experienced and/or that I have seen firsthand in others I know who are positive for this disease. 

Crushing fatigue, difficulty with thinking, memory, and concentration, severe headaches, seizures, neck stiffness, numbness and/or tingling in the extremities, migrating joint pain, muscle aches, stiffness in large joints, anxiety, depression, sleep disturbances, palpitations or irregular heartbeat (Lyme carditis), facial palsy, shooting pains, motor or sensory neuropathies, vision changes, hearing issues, fever, meningitis, fainting, nausea, dizziness, temperature sensitivity, digestive issues, manic episodes, psychosis, schizophrenia, Lyme "rage," etc.

Treatment, Cost, Diagnosis

• There is no actual cure or path to take. The average patient spends around $16,100 on treatments that scratch the surface, if the patient is lucky
•  (Cameron). 
• According to LymeDisease.org, 70% of those with chronic Lyme Disease are not diagnosed until they have late-stage, untreated Lyme. At this point, the disease is absolutely life-altering.
• A 2021 study found that those suffering from chronic Lyme are 75% more likely to commit suicide than the average person, with a recorded 1,200 suicides occurring each year (Paller).

Social and Relationship Impact

When you combine all of these factors, you get a picture of a person dealing with this disease who is consistently considered a liar by medical professionals. This bleeds into every factor of a life, but absolutely includes relationships.

A Lyme researcher explained that they estimate an astonshing 75% of committed relationships are terminated due to this disease (Diamond).

Why? Well, allow me to serve one more statistic you should know before I give you an example. Chronic Lyme Disease predominantly impacts women, with an estimated 70% of cases being females (Johnson).

An Example:

Let me paint a picture for you.

Jim and Sally (not real people, by the way) have been together for 20 years and have been married for 18. Their two children are teenagers when Sally suddenly gets really sick. For a few months, they chalk it up to stress or exhaustion, but soon, Sally has to quit her job. Jim, ever the kind husband, takes care of the kids and manages the bills just fine for a while. But half a year passes, and the doctors are blaming stress, too. Jim begins to wonder how his wife could be "stressed" when he's been handling her whole life for the last six months. A year passes, and Sally's health just gets worse and worse. She's in bed all day, every day, and Jim begins taking her to doctors left and right. All of them say different versions of the same thing: stress and exhaustion. But as even more time passes, doctors begin to repeat a phrase that Jim can't shake. "Take her to a psychiatrist," which is code for "she's lost her mind and she's faking." Jim thinks about it: no one has found anything that weird internally in his wife, she's lost weight, she's missing the kids' events and games, and the doctors think she's lost it. Being responsible in his mind, Jim waits for the kids to go to college, then files for divorce. Jim isn't a bad person. He wants to believe that Sally is physically sick, but when the doctors say your wife is just crazy, you begin to believe them.

Extreme, right? I know. But I've seen this happen to people. Growing up with a mother with this disease by default introduced me to a lot of broken people suffering from Lyme Disease. Almost every single one has been completely alone, out of money, and absolutely hopeless. 

The Appearance Problem

This all brings me to my point: people don't believe you if you don't look sick.

I have watched this disease firsthand for my entire life. I've seen women unable to walk, experience multiple different types of general onset seizures, lose consciousness, and display every symptom imaginable, and now, I'm living in this, too.

Yet, as long as the medical community refuses to acknowledge this disease, people will be told that they are faking it all.

My Experience 

I cannot, at this point, count the number of times I have been asked, "Are you sure it's not anxiety?" Yes. I'm 100% sure it's not anxiety. I have the bloodwork to prove it's not anxiety, but that is not enough. So doctors keep searching for something else that just might not be there. 

I feel lucky, actually, when it comes to the diagnostic side of things. Because of my mother's fight against this disease, we knew it was, at the very least, something to check for when I got sick, so I did not have to spend years questioning what was wrong with me. And, to my advantage, getting sick when you are 18 and in otherwise immaculate health automatically reduces the toll the disease takes, temporarily, at least. So, I don't really look sick. Sometimes I might get pale or move in a stiff manner for a moment, and for the people who know me well, it's clear I have a lot less muscle than I used to. But I don't look like I'm about to keel over at any given moment. Do not get me wrong here-I am grateful that my physical appearance does not typically reflect the difficulty this disease has caused. 

Not Being "Sick Enough" 

However, I firmly believe that the only reason my mother actually got treated and better from this disease is that she looked sick toward the end of things. She was running out of time quickly. Her life had become a series of seizures, being bedridden, sleeping constantly, and missing out on almost all of her children's lives. She lived in excruciating pain, and the people who loved her the most struggled to watch. But she got better, praise the Lord! In my current understanding, no one else really gets better, but no one dies from this disease naturally. Instead, people spend their entire lives sick, but not sick enough to actually "matter" unless they are going to die from the disease. They spend all of their money on herbs and pointless treatments just to try and buy some hope. 

An anonymous Reddit user actually sums up the emotions behind this illness more perfectly than I can: "It feels like a prison, and I can't help but feel like if it was only a bit more lethal, that at the very least people would empathize with you, that you could look forward to the end of the suffering, or that there would be an actual *bad word* given by the medical world instead of being told by the infectious disease offices in your city "We don't treat Lyme past the 2 week doxy cycle." Like an endless suffering where you can only look forward to decades more of appearing dysfunctional and lazy to society." 

So What do You Do?

That's a question I have been pondering my whole life, way before I got sick. I never wanted another child to watch their mother be called a liar by doctors as her condition grew worse or to worry if she'd be around on my first day of middle school. I wanted to go into the medical field to maybe be part of a change in that. And now, this is closer to my heart than ever because it became my story, not just hers. 

Truthfully, I don't know what to do. If I knew, I'd be doing it already. I suppose a good start is to listen to those dealing with this illness, ask good questions, do good research, pray (of course), and remain educated.