Lyme disease often misdiagnosed
San Mateo Daily Journal, CA
By Jeremy Herb

Denise Huajardo Springer started losing vision in her left eye in 2001 and began suffering from bouts of extreme fatigue. The San Mateo resident had to put medical school on hold as her health deteriorated.

Her doctors said she had Multiple Sclerosis.

Her doctors were wrong.

Springer had Lyme disease, contracted from tick bites, despite three doctors who told her otherwise. When her son developed his speech slower than normal, Springer learned that her 2-year-old also had Lyme.

She had herself tested and found out her incorrect MS diagnosis was really Lyme, and she passed it onto her son when he was born.

“One doctor told me I needed to come to grips with the fact I had MS,” Springer said. “Something all along told me I didn’t have MS.”

Now, Springer’s health has improved after undergoing long-term treatment, which includes ...injections, acupuncture, supplements and antibiotics she continues to take. Her son’s health also improved, and Huajardo-Springer said he started “talking up a storm” two weeks after he began taking antibiotics.

Her story is one of many highlighting a growing controversy in the medical community over diagnosing and treating the most common vector-borne disease in the United States .

Lyme disease is a bacterial disease contracted most commonly from a deer tick bite. The classic sign of the disease is a bull’s eye rash around a tick bite, but many patients don’t get the rash, including Springer.

Initially, the disease causes flu-like symptoms, but long-term effects, including severe fatigue, muscle and joint pains, numbness and other symptoms, can persist past the four-week treatment recommended by the Center for Disease Control and Prevention.

Chronic treatment contested

Most patients can be cured with a few weeks of antibiotics taken by mouth, according to the CDC Web site. For those who continue to have symptoms, the CDC says longer courses of treatment are not beneficial, and have been linked to serious complications, including death.

Phyllis Holm said long-term treatment is what helped her daughter Megan recover from Lyme, after wading through 23 doctors over a three-year span to get it diagnosed. Holm said she was told repeatedly her daughter was undergoing stress, and her symptoms of extreme fatigue were psychological.

When she was finally diagnosed, Megan had to go on oral antibiotics for a year and a half, followed by eight months of IV treatment, which is what finally improved her condition.

Holm and Lyme-literate doctors say Megan had Chronic Lyme, which is what also plagued Huajardo-Springer. Chronic patients have recurring symptoms that can return after being dormant for months or years, and Lyme-literate doctors say long-term treatment is needed.

The mainstream medical community, however, has not embraced long-term treatment. San Mateo County Health Officer Dr. Scott Morrow said this is because there isn’t peer-reviewed science that provides evidence for Chronic Lyme.

One Lyme specialist even ran into legal troubles for providing long-term care in North Carolina .

The North Carolina Medical Board suspended Dr. Joseph Jemsek’s medical license for one year last month. The board said Jemsek, who has about 400 Lyme patients nationwide, including California , strayed too far from standard treatment methods, and did not properly inform patients his treatment was considered unorthodox.

Jemsek can continue to practice medicine during the year, as the suspension resembles a probationary period.

In California , there are laws that allow doctors to prescribe long-term treatment — so long as they make it clear to patients it is not the standard treatment. California is one of only a handful of states to make this distinction.

Medical bills point upwards

The debate over Chronic Lyme runs deep into patients’ pocketbooks. Holm said she spent over $100,000 out of pocket for her daughter’s treatment. The medical bills aren’t going to stop soon, either, with antibiotics still needed for her daughter.

Treating Chronic Lyme can be a lengthy and expensive process, with multiple medications that can be necessary for years. Holm said even with “relatively good” medical insurance, her bills went skyward, and most patients face the same costly situation.

It took Melanie Reber more than 15 years to learn she had Lyme, after suffering from migraines, numbness, various rashes and other mysterious symptoms.

After doing her own research and finding a local doctor to diagnose her with the disease, her condition worsened after seven months of oral antibiotics, likely due to the co-infections she had, which are additional diseases ticks carry along with Lyme that can potentially complicate treatment and prolong symptoms.

She sought a specialist to treat it aggressively, and her health improved after an additional 15 months of antibiotics through an IV, followed by more oral medicine.

“It really affects your life in every way: financially, physically, mentally, spiritually,” Reber said. “It robs you of you. All you know. All you are sure of.”

The 19 prescriptions she had to pay for also robbed her of her savings. Reber said her insurance coverage maxed out at $500 per year, when just one of her numerous medications costs $200 every day.

“I had to use a stove timer for my medications,” Reber said. “In the morning, I’d set out pills in a clock shape. I’d take the 12 O’clock, set the timer, then two hours later take the 1 O’clock, and so on.”

Support groups ease pain, find doctors

Holm said one of the biggest assets during her daughter’s battle with Lyme was the support group they attended.

“The support group has been invaluable,” Holm said. “It’s a place to learn. Everyone shares their secrets and tips on how to deal with the little things that come along.”

Holm said there are about 80 to 100 people in San Mateo County who are in the group, and about 20 attend meetings.

The California Lyme Disease Association also provides help, sponsoring a support group online that has more than 300 members and provides contacts for doctors who will diagnose Lyme.

“You can’t get medical help — that’s why the support group is important,” Holm said. “We know we’re sick and not crazy, even if the mainstream doesn’t see it that way.”

Morrow said many doctors do not treat Lyme, sometimes because they don’t think the disease is prevalent in California . He estimated there are less than five doctors in the Bay Area who will provide treatment.

One of the reasons the number is so small is the difficulty in diagnosing Lyme. The ELISA test is used to screen patients who show symptoms, but according to the International Lyme and Associated Diseases Society Web site, this gives a false negative 35 percent of the time.

Further complicating diagnosis are the wide range of symptoms associated with the disease. Many cases end up like Springer, where doctors suggest other illnesses instead of Lyme. In addition, many patients don’t recall a tick bite or the rash that comes with the disease, which makes it even less likely that Lyme will be suggested.

When Lyme is treated quickly, the symptoms are generally eliminated quickly with oral antibiotics. But when it takes months or years before the disease is diagnosed and treated, it can eat away at a patient’s health and cost thousands of dollars.

CALDA President Phyllis Mervine set out to find how common it was for doctors to overlook Lyme. She said she surveyed 50 people in Ukiah who showed similar symptoms to the disease. Out of the 50 patients, only two said doctors suggested testing for Lyme.

Mervine said she hopes to change this statistic, and may get some help from new state legislation. This is the first year in California that Lyme is a lab reportable disease. Last year, 24 cases of Lyme were reported, but there have already been 87 cases reported this year through May.

Educating people — in both the medical community and the general public — is the key to advancing Lyme research and awareness, Morrow said.

“If we truly only have three cases (in San Mateo ), it’s very different in the physician’s mind versus 100,” Morrow said. “It’s a big difference in public perception and in the medical community.”

lyme diseases cases reported in California :

2004: 12
2005: 24
2006 (Through May): 87

Source: California Department of Health Services

How can I protect myself from Lyme disease?

Whenever possible, avoid entering areas that are likely to be infested with ticks, particularly in spring and summer when ticks feed.

If in an area with ticks, wear light-colored clothing so ticks can be spotted more easily and removed before becoming attached.

If in an area with ticks, wear long-sleeved shirts and tuck pants into socks.

Application of insect repellents containing DEET to clothes and exposed skin, and permethrin (which kills ticks on contact) to clothes, can help reduce the risk of tick attachment. DEET can be used safely on children and adults but should be applied according to Environmental Protection Agency guidelines to reduce the possibility of toxicity.

Check for ticks daily and remove them promptly. Embedded ticks should be removed by using fine-tipped tweezers. Cleanse the area with an antiseptic.

You can reduce the number of ticks around your home by removing leaf litter and brush and woodpiles around your house and at the edge of your yard. By clearing trees and brush in your yard, you can reduce the likelihood that deer, rodents, and ticks will live there.

Source: CDC

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