Lyme Disease - The Cancer and AIDS of Infectious Disease

The Cancer and AIDS of Infectious Disease

What Lyme disease taught me about being unseen — and about hope

I first wrote this post years ago, and it was only about vaccines. I didn’t yet know what I know now. Since then, my family and I have walked straight into the middle of this, and I need to tell the fuller story.

There was a night I couldn’t see. I couldn’t talk. I couldn’t move. I thought I had been a miracle, and a success story, but there I was experiencing a "Lyme relapse". Paramedics took me by ambulance to the emergency room, and the doctor who saw me was kind, and honest, and completely at a loss. Once I regained my ability to talk and see, by just lying there a few hours, he apologized to me. He told me he hadn’t been taught how to handle infectious disease in medical school. And he sent me home with a single instruction: find a “Lyme Literate” doctor. I had already been referred to one years past and had spent $25k in two months between my trip to Mexico and back to the USA to meet with the "expert". 

The patients I couldn’t reach

For years, in all my work in health and wellness, I met a lot of hurting people. And if I’m honest, there was one group I always felt helpless to truly reach: the ones with Lyme. Nothing about them fit the tidy patterns. What helped one person did nothing for the next. Their illness seemed to shift shape and slip through every framework I had. I could not figure them out.

Now I understand why. I am one of them.

“The cancer and AIDS of infectious disease”

An oncologist — a cancer doctor who had Lyme disease himself — once taught that Lyme is “the cancer and AIDS of infectious disease.” The longer I live inside it, the truer that becomes.

Like cancer, Lyme is not one thing. “Cancer” is really hundreds of diseases with different types, stages, and grades — and Lyme is the same. It moves through phases: an early, localized bite and rash; a disseminated stage that reaches the joints, the heart, the nervous system; and a late, entrenched stage that is a different animal entirely. Caught early, it can be straightforward. Caught late, it becomes a long campaign. And it is ruthlessly individual — two people with “the same” Lyme can look nothing alike, and the protocol that gives one person their life back does little for the next. Lyme is even called “the great imitator,” because it can wear the face of MS, ALS, fibromyalgia, chronic fatigue, arthritis, even psychiatric illness — so people wander from specialist to specialist, unseen.

Like AIDS, the deeper wound is to the immune system itself. When the body is worn down and the immune system dysregulated, the door swings open, and opportunistic co-infections and reactivations move in — Babesia, Bartonella, Anaplasma, Ehrlichia, Cytomegalovirus, dormant viruses like Epstein-Barr waking back up. It isn’t only the first invader that harms you; it’s everything that gets to take hold once your defenses are down. One infection becomes many, and the co-infections can be harder than the original Lyme, so getting well becomes a layered, sequenced fight rather than a single prescription.

The cruelty of an invisible illness

Someone I work with in the health industry said something to me that I have not been able to shake. She told me, more or less, that people were sick of hearing my story and just wanted me to be well.

I’ve turned that over and over, and I keep landing on the same questions. Would she have said that to someone with cancer? Would she have said it to someone with AIDS? Would anyone tell a person in a chemo chair that the room is tired of their story and would they please just recover? Of course not. But when the disease is invisible — when you look “fine” on the outside while your body is under siege — people run out of patience for a suffering they cannot see. That, right there, is the loneliest part of this illness. Not the pain. The disbelief.

On being told to “just get well”

I have to soften something here, because I dearly love the woman who once told me that people wished I would simply get well. I’ve since learned she was lovingly passing along what others — some of my own business partners — were feeling, and I don’t hold a single speck of it against her. From the outside, I looked fine. How could any of them have known?

But I’ll be honest about what those words did: they sat me back severtal years. Years of hoping, praying, searching, and doing everything I knew how to do to get well, before I would share again, or be part of the team helping to uplift and educate. Praying that someday I would be able to make everyone proud... eventually. Years of reaching for my oils when I couldn’t form words, when the pressure in my head was too heavy to lift. What almost no one knew was what I was carrying underneath the smile.

Because I built my whole business without ever knowing what I was truly fighting. There were nights I slept in my car, too weak to go on and without the money to do anything else. There were mornings I knelt and prayed before a class, begging God to let me teach without anyone feeling how weak and tired and sick I really was. I would smile, and teach, and then go home and quietly fall apart where no one could see. If I could do what I did then, at my worst physically, then I could surely get back in to doing business now. 

So here is where I’ve landed. To the wish itself — that I would just hurry up and be well — I send a very polite little “bird,” and I send it smiling. And to the dear woman who carried the message, I send nothing but love. Because I am fighting to be well, every single day — not for anyone’s comfort or convenience, but for God, for my children, for my husband, for myself, and for every soul still swinging in this same fight who is grateful when someone is brave enough to say out loud what actually helps.

And I am rising. Now that I’m out of a toxic relationship that was quietly making me sicker, the setbacks are fewer and farther between. I’m a little gun-shy, I’ll admit — wanting so badly to make it all the way back without tripping again. But I am dusting myself off. Not one hundred percent. But back.

A system that couldn’t catch us

That ER doctor’s honesty was the first crack of light: at least he told me the truth. But the road he pointed me down is a hard one. The standard Lyme tests are notoriously unreliable, especially early on, so people go undiagnosed or misdiagnosed for years. The “Lyme Literate” doctors who actually know how to navigate it charge around $650 an hour, and insurance doesn’t cover them. I spent roughly $2,500 in labs and visits just to finally learn that my daughter carried two strains of Lyme.

None of this is a fringe complaint. Years ago, the Connecticut Attorney General opened an antitrust investigation into how the national Lyme treatment guidelines were written, and found conflict-of-interest problems serious enough that the guidelines had to be reassessed. It’s the same story told in the documentary Under Our Skin (2008, directed by Andy Abrahams Wilson) and in the book Bitten by science journalist Kris Newby, who produced that film — patients dismissed, doctors risking their licenses to treat them, and a system slow to admit how many people it was failing. Newby’s book also chases a darker, more unsettling question — whether tick-borne illness has roots in Cold War bioweapons research — a possibility she investigated for years but, by her own account, could not fully document. I raise it the way she does: as a question that deserves answers, not a settled fact.

Even the first vaccine for Lyme, LYMErix, tells a cautionary version of this story: licensed in 1998, it was voluntarily pulled by 2002 amid fear, lawsuits, and collapsing sales — and today there is still no vaccine, and no simple answer.

The marketplace of desperation

When you step into the Lyme world, the first thing that hits you is the noise. Everyone is shouting a different answer, and almost none of it is settled. One doctor says go to the source and heal the cells. Another says no — it’s mold; detox the mold and the hidden pathogens first. Another says pull the amalgam fillings, take out the implants, remove anything synthetic the body might be fighting. Another swears by binders, another by cleanses, another by herbs and tinctures and oils, another by years and years of antibiotics. Ozone. Hyperbaric oxygen. Peptides. IV vitamin C. Chelation. Stem cells. Rife machines. Saunas, hot-and-cold plunges, real food, water, sunshine, air. Some blend the alternative with the conventional; some abandon conventional medicine entirely. And underneath all of it runs the same desperate question: what will finally make me well?

And people pay. Families spend tens of thousands of dollars a month, and hundreds of thousands over the years — almost all of it out of pocket, because insurance won’t touch it. One study catalogued nearly 120 clinics offering unproven Lyme therapies, with visits and treatments running into the thousands. This isn’t foolishness. It is desperation. When you are drowning, no price feels too high for a rope.

Please read this part with me

I love the people who read this blog, so I have to be honest about one thing. Most of what I listed above is unproven — expensive and uncertain, but not necessarily dangerous. A few things are a different category, and I won’t pretend otherwise even though I understand the desperation completely. 

Where my family is now

A few months ago, my own children were diagnosed. That is its own kind of heartbreak — and its own fierce resolve. For our family, we’ve chosen a newer, still-experimental path, and I share it not as a prescription but as one honest piece of our story: every case of Lyme is different, and what helps one person may do little for the next. Whatever a family chooses, I believe it should be walked alongside a good, trusted, Lyme-literate physician — especially for our little ones, who deserve every ounce of careful oversight we can give them. However, God is the ultimate source of truth for YOU and your family. 

Choosing hope in all the noise

Just yesterday, a friend called me, and after ten long years of searching, her voice sounded different. She has finally found something that is helping her. For her, it turned out to be the peptides. I don’t share that because peptides are the answer for everyone — you already know by now that what rescues one person may do nothing for the next. I share it because after a decade, she found her way. And that is the thing I want you to hold onto with both hands: healing paths do exist. They are often quiet, often deeply personal, and sometimes found only after a long and stubborn search. Please don’t let go of hope.

Here is what I keep coming back to, in the middle of all the shouting. Underneath every fancy, expensive, contested therapy, the body still heals the way it has always healed: with real food, clean water, sunshine, fresh air, deep rest, movement it can tolerate, calmer nerves, and a spirit that is cared for. These are not the whole answer to something as complex as Lyme. But they are the ground everything else has to stand on, and they are available to everyone, and no one can charge you $650 an hour for a walk in the morning light.

And there is one more medicine I won’t leave out, because it costs nothing and it may matter most: to be seen. To be believed. If you are the one who is sick and invisible, please hear me — your suffering is real, even if no one around you can see it. And if you love someone who is walking this road, the kindest thing you can do is not to grow tired of their story, but to keep listening as if their pain were as visible as any you could name.

“For thou hast been a strength to the poor, a strength to the needy in his distress, a refuge from the storm, a shadow from the heat.”

— Isaiah 25:4

I used to feel helpless before the Lyme patients I met. Now I am one, and I finally understand them from the inside — and that, I think, is the whole reason I’m still telling this story. It is my mess becoming my message. If it helps even one person feel a little less alone, a little more seen, then every hard mile of it will have been worth something.

With much love,

Steffanie

A caring note: I’m a wellness educator sharing my own family’s experience — not a physician, and nothing here is medical advice, diagnosis, or a treatment plan. Lyme disease and its treatment are complex and genuinely contested, and decisions about testing and care belong to you and a qualified, trusted doctor who knows your situation. Some therapies discussed here are unproven, and a few can be dangerous; please do not start, stop, or change any treatment based on a blog post. If you or your child may have a tick-borne illness, seek care from a licensed physician.