What will leaders do to address tick-borne diseases in our area?

To the Editor:
I am writing to raise awareness about the negligent medical treatment of tick-borne diseases. The signs of tick-borne diseases are household knowledge — cold symptoms, achy joints, fever. If not treated, it can be catastrophic to your whole health. Despite this household knowledge, doctors’ and insurance companies’ heads are stuck firmly in the sand.

In the spring of 2020, I had a tick bite. Living on two hillside acres in Rensselaerville, it’s not surprising. Every day is an exposure, and nymph ticks can often go unseen. I went to my primary care, did two weeks of doxycycline, and felt OK. Protocol followed, case closed. Right?

In mid-June, I started to feel poorly. I developed a stiff neck, headaches, night sweats, and a fever that would start low in the morning and creep up through the day, each evening inching higher. I saw my primary, but no specific diagnosis was clear.

In early July, a paralyzing headache and 104-degree fever brought me to urgent care (WellNow on Western Avenue, aka HellNow in my family). They took a bunch of blood and swab samples and sent them off testing. I told the doctor that I was worried I had meningitis — the headaches, fever, stiff neck, growing confusion, I felt cold but was always sweating. I was told, “People don’t just get meningitis,” and was sent home.

The next day I was at Albany Medical Center’s emergency room, having a lumbar puncture confirming the meningitis, and landed in a bed in the infectious-disease unit. The hospital tested me for all kinds of things to find the source of my condition, and the only thing that was positive was Epstein Barr Virus — an opportunistic virus that catches folks when they’re down, and most of us have, lying dormant in our system from childhood. Tick tests were ordered, too — but only the routine tests offered in a conventional American medical setting for which insurance companies will pay.

That’s the thing — there are more detailed and more accurate tick tests available than what is offered in the conventional American medical system— including Western Blot, ELISA, and testing for Bartonella.

After a few days, I was sent home not feeling much better, told the EBV and viral meningitis would work itself out, and to follow up with my primary. I got better slowly, and followed up, but never felt 100 percent.

Over the next three years, I began experiencing strange seemingly unrelated symptoms. A persistent scratchy throat, achiness, a puffy sluggish feeling at the base of my skull, heart palpitations, left-side numbness and weakness, muscle spasms, multiple instances of feeling neurologically overstimulated and on the verge of a seizure, plus extreme daily fatigue. I’ll add, I’m an otherwise healthy, athletic, fit mom in my 30s with ideal blood work and healthy biometrics.

I saw my primary care about my symptoms several times, who referred me to specialist networks to get checked out — including a memorable neurologist who told me “I can’t help you,” within 60 seconds of meeting, that it was “probably in your head,” then, when I expressed their answer didn’t satisfy me, asked me, “Do you have any learning disabilities?”

From 2020 to 2023, I went to around 30 doctors’ appointments, blood draws, tests, and scans seeking a diagnosis for symptoms that are all associated with tick-borne diseases common in our area — and was never once offered the best available tick testing.

In 2023, I was (am) grateful to have learned about and found myself at the Stram Center for Integrative Medicine in Delmar. Stram doesn’t work with insurance providers or limit themselves to using insurers’ preferred laboratories for testing. I respect that they focus on patients, not billing.

My doctor immediately thought my case sounded like tick trouble. Reading my medical history, they also noticed I had tested positive for Anaplasmosis at HellNow urgent care in July 2020 — but nobody ever notified me of the result, or treated me for it. The tick evidence was there all along, and any of my doctors could have seen it on their computer had they looked at my history. But, evidently, my doctor at Stram was the first to do so.

Stram Center ordered testing from MDL in New Jersey — mdlab.com. The results showed I had Lymes and Bartonella that had gone chronic, as well as a current case of Anaplasmosis. I was sick, and it wasn’t in my head. I started a long regimen of antibiotics, and most of my symptoms have since resolved.

It feels obstructionist that I had to go to such lengths to get the appropriate test for such an obvious problem living in a tick-saturated place like the Hilltowns. Why do doctors not order the most accurate and thorough tests? Why do insurance companies not cover them? Why are we not using the right tool for the job? If you ask me, it’s because in America, a patient cured of chronic illness is a recurring customer lost.

I’m writing because I think there are a lot more people out there with stories like mine. Since finding Stram, I have connected with others who have similar stories of being gaslighted by the medical industry for years, only to find out that it was tick trouble all along by seeing a practitioner outside the conventional medical system. I want our kids to have access to appropriate testing as they grow up in an area where the tick problem is getting worse.

I’ve written my county, state, and federal representatives; the relevant health committees in the Albany County Legislature and New York State Senate and Assembly; and the Albany County and New York state health departments to share my experience. I encourage others with similar experiences to do the same.

Insurance companies have dictated access to appropriate testing for tick-borne diseases to the detriment of patients — the right tools exist, and insurance companies and doctors should be legally required to use them.

What will political leaders and health officials do to address this negligence for tick-borne diseases in our area? 

Sarah Gordon

Rensselaerville

Editor’s note: When reached for comment, a WellNow spokesperson told The Enterprise, “The health, safety and experience of our patients is our top priority at WellNow. Due to patient privacy laws, we cannot discuss individual patients. However, we strongly encourage any patients who have questions or concerns about their experience to reach out to us directly.”

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