#ilads

TL;DR thought I had fibro, after 10 years turns out it is chronic lyme/bartonella which is treatable. Find an ILADS literate doctor if you have fibro I beg you most doctors are not aware of this and how to treat.

Can't methylate=Can't heal.

Near the end of my conversation with Raxlen, I mentioned how clear it is that people crave answers—that they want some label to help them understand the things they’re going through. Raxlen agreed. Was it ever hard for him not to provide that, I wondered, if he wasn’t certain that what they were experiencing was Lyme?

“I’m pretty sure when I tell the patient what I think is going on and why and document it for them,” he said, “and show them what tests were negative and why it can’t be A or B, but now we’re confronted with what’s inside this C boundary and everything’s fitting in, then I can tell the patient, from my experience, I’m pretty sure this is what’s going on.”

And, I asked, sometimes the answer isn’t Lyme?

He cut me off. “The lady that was sitting there that was marking off the forms has a 19- or 20-year history of living in and vacationing in the Hamptons,” he told me. “She had minimal symptoms except she forgot to turn the chicken off and it almost burned the house down, and so her kids kind of tease her about her memory.” She had animals on the property; she had indeterminate test results. She had sore wrists and ankles that came and went. Her hands would feel numb in the morning. She had Raynaud’s—“That’s common in Lyme.” (According to the American College of Rheumatology, 10 percent of the population experiences Raynaud’s, a circulatory response to cold and stress.) In the past, she’d tried to get an Adderall prescription to help her focus.

“That’s a Lyme case until proven otherwise,” Raxlen said. “That’s certainly enough for me to put her on an oral-antibiotic program—come back, see me in two months.”

Raxlen is currently on a three-year probation with the New York State Board for Professional Medical Conduct over allegations that include gross negligence, gross incompetence, and failure to maintain adequate medical records. This is not the first time he has come to the attention of state medical boards; once, he was accused of telling a woman dying of Lou Gehrig’s disease that she might have Lyme. (He was ultimately not officially censored.) But his current probation does not seem to have injured his standing in the world of Lyme. This fall, he will receive the Pioneer in Lyme Award at the 2019 ILADS conference in Boston.