As the warm weather in May beckons us to go outdoors, people need to be aware that they are not alone as the woods are full of ticks.
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In fact, May is Lyme Disease Awareness Month, a reminder that sometimes very bad things can come in very tiny packages. In this case, it is a bacteria called Borrelia burgdorferi that is transmitted to animals and people by the bite of the western black-legged tick.
A particularly nasty and debilitating disease, Lyme has brought together a group of people in El Dorado County who either have Lyme or who have a family member with the condition. Together they make up a support group called Lyme Junction.
Founded by Carey Mencarini, a 46-year-old resident of Shingle Springs, the group provides support and information. More importantly, it helps those with Lyme feel less alone.
“Lyme is isolating,” said Mencarini. “My whole reason for starting the group was I was so isolated. I didn’t have support like cancer patients. Support and awareness is the key and was my reason and passion for starting the group.”
At an April 24 gathering of the group, five women discussed their experiences with Lyme. Two of them, Laura Henderson, 48, of Folsom, and Vicky Ray, 62, of Pollock Pines, have the disease. Cindy Anderson, of Plymouth, has a daughter, 22, with Lyme disease. So does Anna Gleason, of Folsom, whose daughter is 21.
Mencarini, on the other hand, not only has Lyme but so does her son. She said she believes she passed the disease on to her son when she was pregnant.
Showing just a portion of the pills and supplements she takes on a regular basis to stay alive, Mencarini also has a port installed in her chest so she can inject the medicine she needs directly into her body.
As the women talked, it was clear that their stories were similar as they sought treatment either for themselves or their children: one of continual misdiagnosis, a lack of local Lyme-literate doctors to treat them, and finally after years of tests and treatment, a correct diagnosis of Lyme disease.
Ray said she was misdiagnosed initially, having flu-like symptoms that wouldn’t go away. That was followed by neuromuscular problems such as tremors, jerking, memory loss, joint pain and arthritis that led her to nine different doctors. “My family doctor was very helpful,” she said, “but it took a lot of doctors to find someone who could treat me.”
Mencarini said her initial symptoms were also arthritis and joint problems, along with a flu-like fever and chronic fatigue. “The neurological and organ-related symptoms tend to show up when the disease has progressed,” she added. “But you need to rule out everything else before concluding it’s Lyme. Typically a doctor will run two tests — the Western Blot and CD57. These tests are covered by insurance. If they come back with certain results, you move on to an IGeneX test.” (IGeneX is a company located in Palo Alto.)
Anderson and Gleason discussed the long road they have faced in getting an accurate diagnosis for their daughters. “My daughter got Lyme at 6 or 8 but it wasn’t until she was 17 that she started to show symptoms,” said Anderson. “We’ve been on this path for seven years and have seen many specialists.”
Similarly, Gleason’s daughter was under treatment by different specialists for six years before she was diagnosed with Lyme. “That is the common story,” she said. “Misdiagnosis and a lot of secondary issues … without understanding the root cause and then as you go through 10 or 20 physicians and misdiagnoses, then you reach that point you finally find yourself with a Lyme-literate doctor and can get an accurate diagnosis.”
“It’s important to point out that the treatment is very difficult,” said Gleason. “It’s analogous to chemo in that it makes you sicker. You feel worse to begin with and it can last for years at a time. In my daughter’s case, she suffered during treatment. But when she goes off treatment, she gets worse. Her functioning goes down.”
An additional complication with Lyme is that it often is accompanied by one or more bacterial co-infections that have to be treated first. The women noted that these secondary issues and diseases are often covered by insurance, but not necessarily the root cause which is Lyme Disease. But they all agree that things are better than they were even a few years ago.
As for their goal in dealing with Lyme, the women seem to agree they’re not looking for a cure, but rather remission of the disease. “Our kitchen table looks like the table over there (with Mencarini’s medicine on it),” said Gleason. “People may give up because of the cost or go bankrupt. Then they stop and their organs give up and they die … I’m looking for remission for my daughter so she can function as a young adult.”
The women agreed it’s important to get an accurate diagnosis and to rule out everything else before concluding it’s Lyme. The Western Blot and CD57 tests can help in pinpointing the disease, they said. After that, it’s important to find a Lyme-literate doctor who can treat you. They don’t fault their family doctors or specialists for not spotting the disease earlier because they believe that much of what’s known about the disease is still fairly new.
The women encouraged people to make use of the resources out there, many of which are online, such as lymedisease.org. They also suggested watching the documentary “Under Our Skin” which is on the Internet or can be ordered. A physician who may be able to help is Dr. William Mora, who is with Health Associates Medical Group in Sacramento. And then of course there is Mencarini at [email protected]
“The important thing is don’t give up,” said Anderson. “Be your own advocate. Don’t stop. And if your symptoms don’t improve after a different treatment, keep going. Also know that the ticks can be so small you may not even know you’ve been bit.”
Another resource is El Dorado County Health and Human Services Agency. Kristine Oase Guth, MPH, who is with the agency, said since Jan 1, 2012, through April 7, 2014, there have been two confirmed cases of Lyme disease in El Dorado County residents. However, the women in Lyme Junction believe this is because people are being diagnosed and treated outside the county and thus their numbers are being reported elsewhere.
County health offers this advice: Ticks must be attached for 24-48 hours before the bacteria can be transmitted, so prompt removal of them is extremely important. Check with your doctor for further treatment advice, including a preventative dose of antibiotics. Suggestions for reducing exposure to ticks include knowing when and where to expect them. They are more common in warmer months and in moist and humid environments near wooded or grassy areas. To avoid ticks, walk in the center of trails, use an insect repellent containing DEET on skin and clothing or permethrin on clothing and gear to repel ticks. Prevent family pets from bringing ticks into the home by using tick medicine or a tick collar. Check your body and clothing for ticks after being outdoors and also check your pets. Placing clothes into a dryer on high heat can effectively kill them.
Early signs of being infected include a bull’s-eye rash at the bite site and a flu-like illness such as muscle aches, joint pain, fatigue, headache, stiff neck, chills, fever or swollen lymph nodes. Late symptoms, which can occur weeks, months or years later, include numbness, weak or paralyzed muscles or sharp pain in parts of the body along with sensitivity to light. Swelling and pain in joints, difficulty with memory, concentration or speech can occur. Some Lyme disease patients also experience mood swings, depression or abnormal thought processes. When in doubt, check with your doctor.
Contact Dawn Hodson at 530-344-5071 or [email protected] Follow @DHodsonMtDemo on Twitter.