Riding the health care bus

I spent much of my day in the hospital yesterday, getting my sinuses evaluated. (I have to admit, I was thrilled when getting a CAT scan was as simple as walking over to the next office.) The verdict? They’re perfectly clear! I thought I had another sinus tumor, because I had the same symptoms as the last time.

“Then why does my ear vibrate when I talk or sing?” I asked the specialist. “And why did the CPAP machine give me an earache on that side?” Off to another office for a hearing test.

Turns out my hearing is borderline — not quite hearing aid territory, but close, they said. (Hah! And here, all those years, I was such a good little girl, wearing earplugs to concerts.) The thing is, there’s nothing actually wrong with my ear drums, yet my hearing on one side is erratic — so now they want an MRI of my brain.

This doesn’t bother me at all, believe it or not. Because my biggest fear with the untreated Lyme disease is dementia, which would really suck. The otolaryngologist told me if there’s Lyme in my brain, it will show up. Which means that I would have actual proof. Small comfort, but still.

It’s been almost 20 years since I was infected, and I’ve been operating on the premise that if I’d only been treated back then, I’d be fine. I’m not so sure now. A lot of the Lyme people I read about were treated, and are in a lot worse shape than me — wheelchair bound, unable to work. I wonder if getting the then-standard treatment (two weeks of doxycycline instead of six) actually strengthens the disease, or drives it further into your system.

That seems to be what happened with my friend Cos, who has relapses. I don’t. So maybe my “Polish girl, strong like ox” immune system kept things under control. Maybe I lucked out.

I was reading over the weekend about the frequent misdiagnosis of Lyme patients. They’ve been treated as if they had MS (a couple of doctors tried that with me), rheumatoid arthritis, lupus, fibromyalgia — everything but Lyme. The Lyme-MS link is interesting, too. Autopsies of MS patients in four different studies turned up as positive for Lyme.

But Big Pharma/Big Research has its hooks into Lyme, and it will take a lot to pry them loose:

Saying she was frustrated because patients weren’t being adequately diagnosed or treated for Lyme disease, Liz Zubek quit British Columbia’s new Complex Chronic Disease Program (CCDP) in June.

Now, Dr. Zubek has teamed up with Lyme disease patients in acrowdfunding project to pay a freedom of information (FOI) fee for the release of medical documents related to the program’s management.

Gwen Barlee, a Lyme disease patient and policy director of Wilderness Committee, launched the project Monday morning and by noon had hit the target, raising half the total $2,160 fee. Dr. Zubek had promised to match dollar-for-dollar any donations made, so she will contribute the balance.

“I worked at the Complex Chronic Disease Program. It was a $1.2-million program, and yet we were not able to do anything that was in our mandate to do,” Dr. Zubek said about why she was supporting Ms. Barlee’s project.

“We were supposed to be looking at better testing for Lyme disease patients, yet there was no facility to improve the testing or to order the testing that we needed from elsewhere. … we were not able to treat the Lyme disease patients. There was no IV setup there. And we were completely at a stalemate to actually be able to meet the mandate of the program,” said Dr. Zubek, who helped start the CCDP in 2013.

With a waiting list of 1,500 patients, Dr. Zubek said she and other doctors faced a great demand for services, “but met with resistance” from above when it came to actually treating patients.

She hopes the documents sought by Ms. Barlee will answer these questions: “Who were the people behind the scenes that blocked us from ordering tests or treatments? Why were we not able to do this? Why did we meet with such resistance?”

In June, Health Minister Terry Lake acknowledged that the new program wasn’t meeting expectations. “They need to fix it,” he said.

Ms. Barlee, who has suffered from Lyme disease for years, said she filed the FOI request after three doctors quit the CCDP earlier this year, raising questions about the program’s effectiveness. She was shocked when the Provincial Health Services Authority told her it would not waive a fee for releasing records concerning the treatment and management of Lyme disease and demanded more than $2,000.

“I have concluded that some of the records you have requested do relate to a matter of public interest … however, we do not conclude the disclosure of these further records will contribute positively to a matter of public interest,” Sandra MacKay, chief counsel for the Provincial Health Services Authority (PHSA), told Ms. Barlee in an Aug. 5 letter.

The CCDP was created after earlier FOI requests by Ms. Barlee unearthed government documents which confirmed Lyme disease patients were not being adequately treated in B.C. In her letter, Ms. MacKay acknowledged Ms. Barlee’s past role, saying “the CCDP was conceived as a result” of her efforts, and “good work was done [by her then] using freedom of information requests.”