Lyme disease is not just something that happens to people who live back East. The illness, transmitted by tick bites, is the fastest-growing vector-borne disease in the country, according to the Centers for Disease Control and Prevention. After being seriously ill for about 18 months – doubled resting heart rate, bloated abdomen, excessive bouts of vomiting – I was finally diagnosed with Lyme disease in 2005, and have responded well to long-term antibiotic therapy. I was infected in Monterey County. So it was important to participate last week, along with about 250 other people, in a Lyme disease awareness event at Pasadera County Club. I almost died from Lyme disease and I don’t want anyone else to have to go through what I did. Lyme disease is rarely fatal, but the suffering is almost unimaginable.

Judy deRegt and Kathy Newell, who have family with Lyme disease, organized the event to promote early detection and improved treatment options for people already sick in our community. There were 15-20 physicians, 20-25 nurses and other health professionals at the May 1 gathering.

Dr. Christine Green, who practices in San Francisco and Los Altos, has been treating Lyme disease since 1989. She said only 14-32 percent of Lyme patients recall having a tick bite, and the bull’s-eye rash often associated with the disease happens in about 20 percent of infections. The disease is spread by deer ticks mostly in the nymph stages – the size of poppy seeds – which flourish in Monterey County from April to July.

Green, a member of the International Lyme Disease Association of physicians, and considered an expert in the field, said, “Having flu-like symptoms not in flu season is a good reason to suspect Lyme, especially if accompanied with numbness, tingling, irregular heartbeat, rapid shooting pains, Bell’s palsy, or a severely stiff neck, and it recurs over time.”

Dr. Nick Harris, board member of the California Lyme Disease Association and founder of Igenex lab in Palo Alto that tests for tick-borne illness, noted that the CDC says the true incidence of Lyme disease in the United States is at least 10-100 times greater than its reporting rules require. That’s partly because clinical diagnostic criteria and surveillance criteria don’t match, nor are chronic Lyme patient statistics included.

Harris said two commonly used tests cannot detect tick-borne illness right after the bite because the body’s immune system does not immediately produce the antibodies necessary for accurate results.

That’s why tick testing is best whenever possible and many Lyme-literate physicians recommend antibiotics if Lyme is suspected.

The same day of Monterey’s Lyme disease event, Connecticut Attorney General Richard Blumenthal announced serious flaws in the Infectious Diseases Society of America’s Lyme disease guidelines, which many doctors across the country follow.

He said the IDSA’s guidelines panel “improperly ignored, or minimized, consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”

The majority of individuals involved in the guidelines development process held direct or indirect commercial interests related to the Lyme vaccines, patents, and particular test kits recommended. They blocked appointment of physicians and scientists with divergent views,  basically suppressing science and treatment outcomes in creating the guidelines many physicians rely on.

It’s upsetting for suffering patients whose lives are debilitated by an infectious disease that becomes chronic either because it is not initially diagnosed and/or not adequately treated.

According to Blumenthal: “The IDSA’s Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines.” He said his office and the IDSA agreed that a new panel “will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman – expert in medical ethics and conflicts of interest, selected by both the IDSA and my office – will assess the new panel for conflicts of interests and ensure its integrity.”

This is a huge relief to Lyme patients, because those guidelines are often used by insurance companies to limit diagnosis and treatment options.

If you get a tick bite, remove the tick by its mouth area with tweezers without squishing it and place it in a container or plastic bag with a moist cotton ball. If it has been embedded for several hours or an unknown amount of time, save it and send it the Sonoma Department of Health to be tested ($29), or Igenex Lab ($60). Request antibiotics from your doctor pending test results.

MICHELLE LONG HAS A MASTER’S DEGREE IN PUBLIC HEALTH AND RUNS SUPPORT GROUPS FOR PEOPLE WITH LYME DISEASE IN MONTEREY COUNTY.