An earlier article on Lyme disease drew a number of responses from people who said they also had the disease or knew someone else who had it, indicating that the true incidence of the disease may be far higher than reported to Public Health.
Previously El Dorado County Public Health officials said they had recorded only five reported cases in the last five years.
Those contacting us with their own stories of Lyme disease indicated that in many cases the symptoms did not appear until years after the tick bite had occurred and once their symptoms appeared, they went through one misdiagnosis after another before testing positive for Lyme. It’s possible that these may be some of the reasons why the number of reported cases of Lyme disease is so small in this county.
Carey Mencarini is an example of this. A 44-year-old mother of two, she now relies on a wheelchair after being seriously disabled by Lyme disease and two co-infections — Babesia and Bartonella.
Lyme disease is often accompanied by one or more co-infections.
Mencarini believes she was bit 16 years ago but because she didn’t associate the bite with later symptoms, she thought she had developed rheumatoid arthritis. Her disease progressed from one thing to another and in late 2011 she almost died from complications of the disease.
Mencarini said she previously took the test for Lyme disease on four different occasions. The first three tests came back negative — including one done by the Mayo Clinic — but the fourth was positive.
“This may be because the disease goes through stages,” she said, “and that’s why certain blood tests don’t always pick it up. Lyme disease is called the ‘great masquerader’ because it masquerades as so many diseases.”
Mencarini believes there is some reluctance by doctors to treat Lyme disease because the Centers for Disease Control (CDC) doesn’t see it as a chronic disease and don’t approve use of long-term antibiotics for patients.
“Lots of insurance companies won’t cover it because they don’t see it as a chronic disease,” she said, “which means people have to pay for treatment and the effects of the disease themselves.”
“Four people on my street alone have it”
Another local woman with Lyme disease is Cindy Frost, 55. She said it’s impossible to tell when she was bit because she never got the telltale bullseye mark.
“The majority of people don’t get a mark and that’s why it turns into long-term chronic disease,” she said. “The bacteria hides in the body or blood and then comes out and attacks you when your immune system is down. Antibiotics can temporarily get rid of it but it never goes away.”
Frost said her first symptoms were in 2007 when she came down with a severe headache, swollen joints, a high fever and vomiting. Then her kidneys shut down.
She ended up in Marshall Hospital for a couple of weeks where a CAT scan showed she had meningitis. But she didn’t know why she had it. Then a nurse at the hospital suggested they look into Lyme disease which clicked with Frost because previously her doctor had suggested testing her for Lyme disease. But the results had not yet come back when she was taken ill and hospitalized.
Frost was subsequently transferred to UC Davis and by then the blood tests came back positive for Lyme disease. She was treated with antibiotics and after a few days was better although she has since had other symptoms of the disease including chronic joint pain.
Frost noted that the disease is very much under-reported. “Four people on my street alone have it,” she said.
“The disease is absolute hell, emotionally and financially”
Another woman with experience dealing with Lyme disease is Anna Gleason. She believes her daughter Monika contracted the disease 16 years ago when the family lived in Nebraska.
“I don’t remember my daughter ever being bitten by a tick but we lived in a tick infected area and I remember picking them off myself and the furniture,” she said.
Gleason said symptoms surfaced in her daughter when she was in the eighth grade. Monika came down with mono and was going through puberty at the same time which may have triggered the disease.
“We didn’t suspect Lyme disease at that time,” Gleason noted.
She said over the past six years her daughter has shown progressively more symptoms. She used to be an avid singer, dancer, and actress. But her joints became inflamed to the point where she couldn’t dance any more. She started seeing doctors and went from specialist to specialist as different symptoms surfaced. She suffered a lot of fatigue, sore throats, colds and tested positive for an auto immune disease. Over a six or seven years she was variously treated for fibromyalgia, lupus, connective tissue disorder, and other conditions. “But there was no firm diagnosis,” said Gleason.
As Monika got sicker and sicker, she had to leave college. She started to lose her hair, had severe nausea, weakness, daily fevers, and neurological symptoms such as memory loss and confusion, along with bad circulation. This led the family to consult a doctor in Cameron Park who tested her adrenal function which came back abnormal. After looking at her medical history, the doctor suggested that Monika could have Lyme disease.
After several tests, Monika was sent to a specialist in San Francisco and all the tests for Lyme disease came back positive. In addition she tested positive for two co-infections — Bartonella and Ehrlichia.
Since January she has been undergoing treatment and is on an IV for the antibiotics plus takes 14 other medications. ”One of the scariest things has been heart problems (Tachycardia) as well as her mobility restrictions,” said her mother.
“The disease is absolute hell, emotionally and financially. People don’t understand it because they can’t see it. It’s a very debilitating disease. Our road has been very difficult,” she said.
However, more than one resident has claimed they contracted babesiosis at the same time they contracted Lyme disease.
Marlene Post, who lives in Placerville, said she got a tick bite in May of 2009. The nymph burrowed into the back of her knee which caused it to swell up and turn purple.
Her doctor said she had an infected bite and put her on antibiotics. “But not the right one,” said Post.
She became so sick she went to the emergency room where they switched her antibiotics. At the time she was shaking uncontrollably and had a fever and the chills accompanied by intense pain that shot up from her knee to the ball joints in her hips, up her spine and ultimately into her head. Her first thought was that she had been bitten by a scorpion or poisonous spider.
“The parasite infuses itself into the blood cells and then breeds very quickly,” said Post. “It robs the body of oxygen and also forms blood clots. Lacking oxygen, the person becomes weak and sick and the blood clots can migrate and bring on a possible stroke, heart attack, or a clot elsewhere in the body. It can kill you.”
Fortunately, after an extensive battery of blood tests by a Lyme specialist at Kaiser Hospital, she was put on the right mix of antibiotics since there is more than one strain of babesiosis. The treatment pretty much rid her of the parasite.
At the same time, Post said the CDC came out and GPS’ed her home and informed her that she had the first case of babesiosis in California.
Post said while she is cured of the babesiosis, she still has chronic Lyme disease. Her advice, “If you think you’ve had a bite, insist on a blood test. You have to be your own patient advocate so demand a blood test.”
New Lyme support group starting
Clearly Lyme disease is a bigger health problem than is being reported and the long-term health effects can be devastating, especially if a person’s immune system is compromised.
Given that possibility, being tested for Lyme disease after a tick bite is a wise precaution. Especially if the bite site shows any sign of infection. People should also discuss treatment options with their doctor rather than brush off a tick bite, given that Lyme disease often comes with some nasty co-infections.
For those already infected with Lyme disease, a local support group is being started. Called Lyme Junction, the first meeting is scheduled for Sept. 24, 11 a.m.-1 p.m. in the El Dorado Hills Library meeting room.
According to its founder, Carey Mencarini, its purpose is to create awareness and connect people locally. For more information, contact Mencarini at firstname.lastname@example.org.
A Lyme Walk and picnic is also planned for Sept. 29, from 11 a.m. to 2 p.m., at McKinley Park, at 6th and Alhambra, in Sacramento for those who want to meet up with others. For more information, go to tiny.cc/iajskw.
Contact Dawn Hodson at 530-344-5071 or email@example.com. Follow @DHodsonMtDemo on Twitter.