Emblazoned across my computer screen was a headline that chronic Lyme patients can strongly identify with:

Like long COVID, Lyme disease can become chronic — and patients are just as dismissed and desperate.

And below it, a succinct subheading:

Gaslit and misunderstood, patients with chronic Lyme disease are calling for greater recognition of their disease.

Salon.com reporter Elizabeth Hlavinka features the story of Jaden, now in his 20s, and his mom, Tracy. Jaden started experiencing weird and painful symptoms at age 14. These included a ringworm-like rash on his head, severe pain in his knees and fingers, intense migraines, and a tendency to come down with viral infections every month or so. Tracy took him to lots of doctors—none of whom could figure out the cause of Jaden’s suffering.

Continuing the story, the article states:

When Jaden was finally diagnosed with acquired Chiari, or a brain herniation caused by a spinal fluid leak, in November 2014, doctors rushed him into brain surgery. However, that only made things worse, according to his mother, and they were back in the hospital on multiple occasions for intolerable pain that ultimately spread to his teeth. At the emergency room in unbearable agony, an attending physician sent him to have his two front teeth pulled, Davis said. Yet that didn’t work to alleviate his pain, either.

After two years of Jaden’s constant agony and no help from any of the specialists they consulted, Tracy found a possible answer in an online group devoted to chronic pain in children: Lyme disease. But as she told the reporter from Salon: “I went to his neurologist and said, ‘I think I know what this is,’ and they wouldn’t take it seriously.”

Finally, a diagnosis

Eventually, Tracy found a doctor who confirmed that Jaden not only had Lyme but was co-infected with bartonellosis and babesiosis. Yet despite lots of out-of-pocket spending on various therapies, no long-term solutions to Jaden’s pain have been found.

Salon’s article uses Jaden’s story as a jumping off point to discuss the serious barriers Lyme patients encounter when seeking medical help. These include problematic lab tests, lack of insurance coverage and a paucity of doctors who know how to recognize and treat tick-borne diseases.

The author interviewed prominent Lyme doctors Dan Cameron, Brian Fallon, and Richard Horowitz, among others. She also provided information from LymeDisease.org’s recent survey of Lyme-treating doctors in the US. Her article is worth sending to your friends and family members who may not believe you when you try to explain your difficulties in finding treatment for Lyme disease.

Kudos to reporter Elizabeth Hlavinka for doing such a good job of laying out the challenges faced by Lyme patients. And to Jaden and Tracy–thank you for sharing your story. Let’s hope 2024 is the year Jaden finds relief. May it also be the year other Lyme patients find the answers they need. This sorry situation has dragged on too long. The time for change is now!

Click here to read Salon’s article.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.