Lyme disease: a real threat in the Tri-Valley

Julie Posey Yorn was healthy and outgoing all her life, a two-time Miss Marin in her single days and later a finalist when she competed as Mrs. Pleasanton in the Mrs. California contest in 2004.

The statement she wrote for that pageant stated: “The world and me, always changing always evolving. Reaching for the stars with determination and drive. Even at my most darkest, challenging times, knowing there is always a shining star to light my path. And remembering that beauty comes from the inside out.”

Now, at 44, married to Jonathon Yorn and the mother of 7-year-old Talan, Julie is living through some of her “challenging times.” Since Talan’s birth in 2007, Yorn has been fighting Lyme disease, which has proved traumatic to live with and was a nightmare to diagnose.

“I had a C-section and got very sick with a fever and rashes and an infection,” Yorn said. “When your immune system drops, the Lyme can really come out. The C-section seemed to trigger it.”

She was exhausted, as are all new mothers, but her energy never returned.

“It was literally debilitating fatigue, with high fevers, just really severe flu symptoms and swollen glands,” she said. And debilitating nausea.

Doctors felt it was a postpartum problem, she said, and they experimented with medications. She saw a psychiatrist who suspected chronic fatigue syndrome. Then her general practitioner sent her to an infectious disease specialist.

“A test for Lyme came back negative,” Yorn said. “I was told by my doctor to suck it up and deal with it. I said, ‘OK this is my life, I guess I will just deal with it.'”

At that time she worked as a financial adviser, struggling to start her business as well as be a wife and mother.

“It took out my immune system. I would get violently ill for weeks and couldn’t recover,” she remembered.

Her feet swelled, and her headaches were so bad she couldn’t see.

“I told myself it was because I was getting old,” she said.

She pursued a healthier lifestyle, taking care with what she ate.

“I tried a gluten-free diet, I juiced,” she recalled. “I reached out to my doctor and said, ‘Please I’m getting worse.'”

She took time off on disability, then changed jobs, going into the title business with a positive attitude.

“I thought OK, this would be fine, I can do this, and it was five months into it, last May, when I realized I couldn’t do this anymore,” Yorn said. “I noticed that I would come home from work and couldn’t move.”

She paid for a doctor outside of the Kaiser system, which she’d been using, who said it might be fibromyalgia since she was getting stabbing pains at 52 nodules in her body.

“They put me on a protocol that nearly killed me, depleting me of energy,” she said. “The doctor said this was the cysts in my body breaking up and causing my pain. But six months into it, it was getting worse.”

Then Yorn began to experience neurological problems.

“I realized when I was working, I wasn’t remembering things. I met with a client, then a week later didn’t remember the meeting.”

She and Jonathon had always been active — surfing, doing martial arts, skiing.

“Now I was having difficulty walking,” she said. “I can’t feel my hands, I struggle cooking meals. Part of it’s cognitive because I can’t multitask.”

“I used to be able to do 10 things at once, now I struggle to do one thing at a time,” she added. “I am burning all of my meals and cutting my hands, burning my hands.”

She began to suffer optical migraines, and by last July her symptoms had magnified and she went into severe anxiety.

In September her mother, who lives in Novato, made her an appointment with a specialist in Marin, and Yorn presented him with her two pages of symptoms and history of seven years’ suffering. At his questioning she remembered a recluse spider bite in 2000, after which she took seven days of antibiotics. The doctor did a Western blot test for Lyme as well as testing for four different viruses related to Lyme.

“The tests came back, and I was really high in all my numbers,” Yorn said.

At last she had a diagnosis: Lyme disease.

In California, Lyme comes from the bite of the black-legged deer tick, Ioxides Pacifica — a tiny tick most would not notice, explained Sue Savod, who is helping to organize a Lyme disease advocacy and awareness group in the Tri-Valley. Savod was perfectly healthy until a tick bite in the Las Trampas hills in Danville 12 years ago.

“This is not your average dog tick. As most Lyme sufferers will tell you, the danger lies in not just the Lyme disease itself, but in the little known co-infections that accompany it,” she wrote in her Lyme Log, which chronicles her journey with the debilitating disease.

“Ticks are nasty creatures who need blood meals to live. First they bite the possum, then the rat, then the fox, and then you. Like using a dirty needle, all manner of parasitical filth besides Lyme is passed along. Diseases called Bartonella, Babesiosis, rickettsia, erlichiosis, anaplasmosis,” she continued.

She noted that Lyme disease is found in every state in the nation and the offending ticks have been found in every county in the Bay Area, except San Francisco.

“Lyme, along with being the No. 1 vector-borne disease in the U.S., is at epidemic proportions, according to the Centers for Disease Control (CDC). And growing,” Savod said. “We’ve all heard of AIDS, and West Nile virus, and so have our doctors. The incidence of Lyme is 10 times those, and those are only the reported cases. Lyme doctors estimate 200,000-300,000 people in just our state alone with undiagnosed Lyme.”

Savod also decries the actions of the medical profession in treating Lyme.

“There is a pitched professional battle going on between the IDSA (Infectious Disease Society of America) and ILADS (International Lyme and Associated Diseases Society). These are premier professional organizations with great political influence,” she explained.

“The definition of Lyme propounded by IDSA doctors is limited to mostly arthritic aches and pains, and is ‘easily cured.’ That was, and ever will be the definition unless the Centers for Disease Control starts listening to the ILADS doctors and researchers who treat Lyme every day,” she said.

“Equally important, co-infections are almost always present. These specialists know the destruction left by doctors who miss the diagnosis as the bacteria multiply to a chronic state within our bodies, and are thus much harder to destroy. There is now overwhelming evidence that the disease is not cured by two weeks of antibiotics. But it’s hard to teach an old dog new tricks.”

Savod and Yorn both noted problems with insurance coverage.

“Lyme is expensive to treat,” Savod said. “Most insurance companies find a way to stop paying, citing CDC definitions of Lyme, and Lyme-literate physicians don’t take insurance. They have chosen to better use their time treating chronic Lyme, rather than being entangled in chronic battles with insurance companies.

“To the uninitiated, all this sounds like we’re hypochondriacs — there’s even a report from CDC staff that coins a term describing us: ‘Lyme loonies.’ We tend to be loonies until you get it, and then you come to understand. You learn about the under-diagnosing, the ignorance, and the political games the Infectious Disease Society doctors are playing with the support of the CDC,” she continued.

“Indeed, many states punish doctors who treat Lyme with long-term antibiotics. That is slowly changing. State legislators, many who have had Lyme or someone in their family has, are championing new legislation that brings Lyme to the forefront. New York Gov. (Andrew) Cuomo just signed such a bill. Why? Because his daughter had been infected with — you guessed it, Lyme disease.”

“For me, the mental part has been worse than all the physical pain,” Yorn said. “It is like being a prisoner within yourself. I went three months without sleeping. I’m a firm believer in God, and I kept talking to him, saying, ‘Get me through this, get me through this, get me through this.'”

More tests found co-infections, and Yorn noted that Lyme disease mimics many other diseases out there, making it especially difficult to diagnosis and treat.

“I couldn’t talk, I couldn’t walk,” she said. “But now I am coming back.”

Before the disease struck, Yorn was an active member of Pleasanton Rotary and an ambassador with the Chamber of Commerce.

Other diseases might elicit sympathy, but not everyone knows about the tribulations of Lyme sufferers.

“The hard part for me is everyone says, ‘You look fine,'” Yorn said.

Yorn and Savod tell those who suspect Lyme to insist on a Western blot test from IGeneX in Palo Alto. Also get tested for co-infections.

“Do not wait. Find a doctor who will listen,” Savod said.

“I want people to get the help they deserve. I want to build awareness,” Yorn said. “This is a huge healthcare issue, and there are multiple people right now in Pleasanton that have Lyme.”

Her son Talan is among them. She had her whole family tested, and Talan tested positive.

“They now say it can be transferred from mother to child in utero,” Yorn said. “We’ve already seen one doctor but to be honest I’m very discouraged. The appointment was $525, and they sent me away with no real treatment plan. So I’m now going to hopefully find another option. We have to treat now, before he is fully symptomatic.”

She noted that many people are walking around with Lyme disease but show no symptoms because their immune systems are strong. But an illness — or a C-section — can change this.

“If you are diagnosed within a year of being bit, you can be cured,” Yorn said, “but I’m not one of those.”

Twelve years after her tick bite, Savod’s last tests were clear for Lyme although her inflammation test was still high and she still has some joint pain, so she is continuing one more round of medication.

“Please be aware, take precautions to cover skin exposed to ticks, and check yourself after being outside,” she warned. “Don’t rely on DEET — Dr. Eva Sapi of the University of New Haven, a Lyme ‘veteran’ and now a Lyme researcher, has discovered that ticks walk right over DEET and just keep on going.”

“Spring is tick nymph time,” Savod pointed out. “They are the most dangerous of all. They need blood meals to survive and mature. If you do get bitten by a tick, or suspect you might have Lyme disease, advocate for yourself with your doctor.”

Learn more about Lyme disease

* Sue Savod’s complete “Lyme Log”

* Documentary “Under Our Skin” — Available at youtube.com

* “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” by Richard Horowitz

* “Cure Unknown: Inside the Lyme Epidemic” by Pamela Weintraub

* www.ilads.org

* Lymedisease.org

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