I just got back from a Lyme conference in Illinois, and a few things kept coming up that I see in my own patients all the time. If you’ve been told your Lyme test was “fine” or “inconclusive” but you still don’t feel like yourself, this is for you.

1. A standard Lyme test only tells part of the story.

The usual first-line Lyme test looks at your antibodies to one organism. It doesn’t look at the other infections ticks can carry, and it can’t tell us how your immune system is responding overall. That’s why I like to look at the whole picture with broader testing, rather than relying on one result.

2. Ticks carry more than one organism.

These are called co-infections. Bartonella and Babesia are the two I think about most. Standard testing rarely looks for them, and Bartonella can hide in the lining of your blood vessels, which is why it needs its own test. When symptoms continue or keep coming back, it often points to more than one thing going on at the same time.

3. MCAS can look a LOT like Lyme (and can be happening alongside it).

Mast cell activation syndrome (MCAS) is when your mast cells, part of your immune system, react too easily. The overlap is big:

  • Fatigue and brain fog
  • Heart racing or dizziness when you stand up
  • Stomach upset, bloating or diarrhea
  • Sinus congestion and headaches
  • Hives, itching or flushing
  • Reacting to foods, smells or chemicals

Because they look alike, it’s easy to focus on one and miss the other. In my experience, when MCAS isn’t calmed down, people have a hard time tolerating the rest of their plan. So making sure it’s under control is part of how I look at the whole picture.

4. PANS and PANDAS often have an infection in the picture too.

PANS and PANDAS are when a child suddenly develops OCD-type behavior, anxiety, tics or big changes in mood. In my experience, there is often a co-infection or another infection in the background, and standard testing rarely looks for it. If your child has had a sudden change like this, please work with your child’s provider and ask about testing for more than one thing.

How I approach it

I’d rather run a broader panel first and find out what is actually going on. Then we build a plan around real results instead of guessing. To make that go smoothly, I ask that you:

  • Bring the FULL lab reports, not a summary. The exact test names matter.
  • Tell us what you’ve done before (what you were given, how much, and for how many days).
  • Be off antibiotics for 14 days before testing, to help improve accuracy.

Not sure where you fit? Take my free Lyme + Co-Infection Symptom Checklist: www.elev8health.me/lyme-checklist

This article is educational and not medical advice. Lyme, co-infections, MCAS and PANS/PANDAS need an individual evaluation.