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Lyme disease, Part II: Ginny’s story

Up until 16 years ago, Ginny Monteen was a self-described mountain goat. She loved to take to the hills, backpacking and leading Sierra Club hikes. If she played hard, she also worked hard in Cal Poly’s publications department — a job she loved.

Her life was full; she was bursting with energy, doing things that she loved. And then she got hit with cancer.

The good news is that she won her cancer battle, due in large part to a rigorous regimen of chemotherapy, and has been cancer-free since.

The bad news is that the chemo so wracked her immune system that it left her vulnerable to whatever disease chose to visit its grief on her.

As she looks back on it now, she believes her chemo probably weakened her enough so when a Lyme-bearing tick bit her about 14 years ago, the disease was able to establish a beachhead within her system. Her life has never been the same since.

“I encountered hundreds of ticks on my hikes,” said the San Luis Obispo resident. “Sometimes ticks were still crawling out of my boots the evening after a hike. I had overcome an aversion to ticks so I could enjoy my outdoor experiences,” she adds.

“Now I wish I had had more information back then and had taken precautions. Ah, hindsight.”

After winning her battle with cancer, although weak from the chemo, she said her health took a downward slide.

“After improving, something changed and I headed downhill healthwise.”

She began having pains, numbness and muscle weakness — and there didn’t seem to be any rhyme or reason for any of her maladies. This went on for about a year as she searched for answers from physicians. Nothing.

“Lyme disease never crossed my mind,” she said.

Then, one day while she was getting her mail, a neighbor told her she’d been at a Chamber of Commerce breakfast that morning, and that a health department official had given a talk about Lyme.

“My neighbor said all the symptoms sounded just like what I was experiencing.”

That was Ginny’s turning point. She read up on the disease and found an out-of-area LLMD, an acronym for Lyme literate medical doctor.

“Lyme has taken away my life as I had known it. No more hiking; only short walks on good days,” she said. “I call my bad days my H&H days for ‘home & horizontal.’ ”

Cyndi Orr is a steering committee member of the SLO Lyme Support Group, an organization that Ginny was a key player in creating. She notes that the cost of treating the disease can be as ruinous as the disease itself.

“For many years, Ginny tried to be treated in a less expensive route of oral antibiotics,” Cyndi said. “However, over time, her symptoms have only worsened. Her doctor now believes that she needs a much more intense treatment using intramuscular shots and possibly intravenous antibiotics.”

The disease, which isn’t covered by Medicare, and insurance companies refuse to pay for long-term treatment, has just about bankrupted Ginny. She’s refinanced her house twice, spent all of her savings and gets by on a fixed-income retirement fund. Out-of-pocket costs can soar into the hundreds of thousands of dollars.

“She simply can’t afford the $20,000 to $30,000 a year that intense treatment can cost,” Cyndi said. “Her doctors expect that she could require this treatment for two to three years for the disease to be brought fully under control.”

“If only Lyme patients could focus solely on getting well,” Ginny said. “Instead, we have to fight insurance companies, worry about money and deal with the dismissive attitude from some of the medical establishment.

“It’s sad to hear how people are not believed by family members, and sad to see the financial impact with people having to sell their homes in order to pay for treatment.”

In an effort to help Ginny — and not lose her home in the process — friends have set up the Ginny Monteen Fund at SESLOC Federal Credit Union.

Making a donation is as easy as going into any SESLOC branch and mentioning Ginny’s name. Or, by making a check out to the Ginny Monteen Fund and mailing it to SESLOC Federal Credit Union, P.O. Box 5360, San Luis Obispo, CA 93403.

“Lyme has wiped out my life as it used to be,” Ginny said.

Join me in helping her get a measure of it back.

Bill Morem can be reached at bmorem@thetribunenews.com orat 781-7852.

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