Negative Lyme Test but Still Sick? A Real Case of Hidden Lyme Disease

Negative Lyme Test but Still Sick? A Real Case of Hidden Lyme Disease

Negative Lyme Test but Still Sick? A Real Case of Hidden Lyme Disease

by Jerry Simon

I want to walk you through a real case, because this is exactly where people get stuck.

This was a male patient in his early 50s, living in New England. Desk job during the week, accountant or lawyer, but on weekends he was outside. Hunting, fishing, camping, kayaking. Active guy.

At some point in his 40s, he remembers a tick bite and a rash.

He did the right thing. Went to urgent care, they recognized it, gave him 10 days of doxycycline. The rash went away, and like most people, he moved on.

But several months later, things started to change.

He noticed he wasn’t as active on weekends. Then came joint pain. General aches. Then headaches. Neck pain. Stiffness. And eventually, shooting pain down his arms and legs.

So he went to his local doctor.

They did everything you’re supposed to do:

  • Thyroid — normal

  • Testosterone — good

  • Liver and kidneys — healthy

  • No lupus, no arthritis

Everything checked out.

But his symptoms kept progressing.


“My Lyme Test Is Negative… But I Know Something’s Wrong”

At some point, he remembered the tick bite.

So they tested him for Lyme disease.

Negative.

But he had the rash- hat matters.

He pushed for treatment anyway and got another course of doxycycline. He felt better… for a short time.

Then the symptoms came back.

Now it was numbness, nerve pain at night, headaches. His joints improved a bit, but everything else continued.

He went back again. More doxycycline helped a little- but not enough.

Eventually, his doctor decided to stop antibiotics.

But the symptoms didn’t stop.


When the Labs Don’t Match the Patient

By the time he came to me, he had:

  • Multiple rounds of doxycycline

  • Negative Lyme testing

  • And nearly every long-term Lyme symptom on the CDC list

He said, “Jerry, I have all the symptoms. Doxycycline helps. But my test is negative.”

So we ran more advanced testing—New Jersey labs, Stony Brook, immune markers from Quest and LabCorp.

Everything still came back clean.

At that point, we had to think differently.


The Missing Piece: Persistent Lyme

By now, it had been over a year and a half since his original infection.

Because Lyme doesn’t always stay in a form that antibiotics can easily treat.

It can shift into what we call a cyst or biofilm state—a protected form where the bacteria essentially hide.

And in that state, antibiotics often don’t work well.


“Jerry, What Are You Doing to Me?”

So instead of repeating the same treatment, we changed the approach.

We used nitazoxanide (Alinia), a medication that helps disrupt biofilm.

In simple terms, it breaks open what’s been hiding.

A few days later, he called—frustrated.

“Jerry, I feel worse!”

And that’s something we prepare for. When biofilm is disrupted, symptoms can flare.

But that reaction tells us we’re finally reaching the underlying issue.


The Turning Point

At that point, we moved quickly.

We repeated blood work—and for the first time, his Lyme test turned positive.

We reintroduced doxycycline.

And this time, it worked.

Not temporarily. It held.


Final Thought

Once we addressed the biofilm and treated at the right time, the patient improved—and stayed better.

If you’re dealing with persistent symptoms, it’s important to rule out the basics first. If everything looks normal, especially with a history of tick exposure, it may be worth taking a closer look and consider having a conversation with your healthcare provider about what next steps might make sense for you.