A look inside the complicated politics of Lyme disease.
It was Sara Allen (his ex-girlfriend and "Sara Smile" muse) who anecdotally diagnosed it as Lyme. Allen, who has the disease herself, advised him to get tested.
Luckily, Hall's body had produced enough antibodies by that point to register on the tests. His doctor prescribed two weeks of Doxycycline. But Hall had done some Internet research and wanted to ensure he was treated correctly. He went to Dr. Joseph J. Burrascano Jr.
Burrascano is one of the most well-known and controversial Lyme-literate doctors, having written a sort of rebel Lyme treatment guide in association with the International Lyme and Associated Diseases Society (ILADS). In 2001 New York State's Administrative Review Board for Professional Medical Conduct brought a case against Burrascano for medical negligence. The charges included prescribing long-term antibiotic therapy for Lyme disease. He's now retired.
Twenty to 30 percent of ticks carry multiple infections. Hall tested positive for Babesia, Ehrlichiosis, Borrelia and Bartonella, common tick-borne co-infections. According to the American Lyme Disease Foundation, there are 10 major tick-borne diseases carried by 82 species of ticks currently found in the United States. Testing for co-infections isn't currently a part of standard screening.
"That's the thing the CDC doesn't recognize," Hall says. "People are misdiagnosed and underdiagnosed, and most people have multiple diseases and they're not treated for them. Doxycycline treats only Borrelia. The other ones just rage in your body or go into hiding or change shape."
In retrospect, Hall had symptoms before the Phoenix fall: tremors, headaches and fevers. He'd blamed it on stress and allergies.
"I've been treated for these four [diseases], and now recently found out I have two more. So I have six different tick-borne diseases I'm dealing with. But I'm feeling good and I'm on a regimen," he says.
His active symptoms were no joke.
"I had joint pains. A lot of skin problems where I'd break out in strange herpetic kinds of rashes. I had shingles, immune system breakdown and a lot of stiff necks and extreme tiredness. Eye things, ear things," he says.
He says his ear would just "close," estimating that he went about 70 percent deaf. For a musician, that's 100 percent fucked.
Hall has homes in rural New York and Maine, both Lyme hotspots. He spends most of his time in New York. He laughs when I ask him if he knows anyone else with Lyme disease.
"Who do I know who doesn't have Lyme disease?" he says before getting back to raging against the medical machine.
"You know, I've been trying to fight for the truth in Lyme disease, and it's hard for me to even get any press because nobody seems to believe it matters," he says, his voice rising. "It's very frustrating and depressing, really, that this disease has such little support and understanding."
Hall's been pounding pavement and doors about Lyme disease since his diagnosis. He plays benefit concerts and writes press releases. While talking about Lyme disease on the Howard Stern Show last year, he said, "Kill all the fuckin' deer!"
He thinks people think he was kidding. But he's dead serious about slashing the deer population in the interest of Lyme disease prevention.
The number of deer in a given area determines the number of deer ticks, which in turns determines the amount of Lyme disease. Deer ticks can't maintain high levels of fertility when feeding only on smaller animals like rabbits and rodents. Due to conservation efforts, suburban sprawl and the elimination of natural predators, the deer population has skyrocketed to unnaturally high levels, throwing the ecological balance out of whack.
It's well-documented that when the neighborhood of Mumford Cove in Groton, Conn., dramatically reduced their deer population, cases of Lyme disease plummeted.
On Monhegan Island, a gorgeous little spot off the coast of southern Maine, 13 percent of residents had enough Lyme disease to show up in tests. Tired of being sick, they voted to eradicate the deer population with sharpshootersin August 1999. After a few years, the deer tick population crashed, and no new no cases of Lyme have been reported.
It's assumed President Bush caught Lyme while vacationing at the Walker family compound in Kennebunkport, Maine. When Dubya announced last August that he'd been treated for Lyme disease the previous year, Hall's hopes for drawing attention to the Lyme wars rose.
It's customary to report presidential health matters, so it's unusual that his Lyme disease diagnosis was kept under wraps for a year. The official story is that it was detected early and resolved fully. Not surprisingly, Bush didn't do anything for Lyme awareness or prevention. Ironically, his dad H.W. dedicated Lyme Disease Awareness Week back in 1989.
PW's Summer Guide 2015