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Lyme disease task force meeting draws experts, families

photoExperts on the Lyme disease task force panel testify in Purcellville Nov. 30. Times-Mirror Staff Photo/ Rachel Leon.

The new statewide Lyme disease task force drew both local families and people from out of state to its first meeting in Purcellville Nov. 30.

Experts and local families testified about how the common disease is often misdiagnosed and untreated, leading to years of chronic complications.

The average person with Lyme disease goes undiagnosed for 1.8 years, with some suffering as long as eight to 10 years without diagnosis and treatment. According to the Centers for Disease Control, about 28 percent of doctors misdiagnose the bulls-eye rash associated with Lyme disease as eczema.

The disease is especially prevalent in Loudoun, and nearby states are looking to Virginia for advances in prevention, treatment and quick diagnosis.

“Most of us in Frederick come down to Loudoun because you guys are way ahead of us,” Maryland resident and registered nurse Linda Adams said. Adams has had Lyme disease for eight years, and her husband and 18-year-old daughter also have it.

“I’m glad the Virginia governor has set this up,” she said.

Adams is getting her nursing license renewed after 22 years of being a homeschooling mother. She hopes to pursue Lyme disease research.

Debbie McCabe, also of Maryland, is a director of the Family Wellness department of the National Integrated Health Associates, in Washington, D.C. Her entire family, including her four children, has Lyme disease.

“We have a huge number of Lyme disease patients and probably half of them come from Virginia,” McCabe said. “It seems like the other half come from Maryland.”

McCabe hopes the new task force will signal a trend in diagnosing and treating Lyme disease more quickly.

“It’s a huge issue,” she said.

Comments


@juneau is exactly correct.  Black Legged Ticks become carriers of the bacteria after feeding on white-footed mice and eastern chipmunks during the early, nymph portion of their life cycle.  This is when they are so small that we do not notice them and are at greatest risk of becoming infected.  The deer’s single role in this cycle is to serve as a breeding ground during the fall and winter.  Deer are never competent reservoirs of the bacteria and hopefully, the ticks are large enough by that time that you would notice them quickly enough to remove before becoming infected.  Your opportunity to accomplish that once bitten is 24-36 hours.


@juneau - I have no mis-conceptions about other carriers of the disease, besides deer.  However, the fact that Loudoun has way too many deer, cannot keep being ignored.  They are an integral chain in Lyme in Louduon.  I will have a dozen deer walk through my property at times.  15 years ago, there weren’t as many.  They’re coming out of the woodwork!  It’s time we dealt with this problem like other local governments such as CT and ME have done, and erradicate the deer.


I have a free lyme resource CD that documents many of things I have learned in my fight to help my wife with Chronic Lyme. www.lyme-resource.com


The IDSA is legally murdering people because of their thumbing their noses up at people sick with Borrelia.  They deny proper diagnosis and proper treatment because they have their hands in deep pockets of money.  Shame on them!
This is a horrific disease and these IDSA members are horrible people.


Good that they are looking into this. Lyme disease is terrible, and there needs to be more prevention, diagnosis/screening, and access to treatment.


This disease has crippled the best and the brightest students.  My 17 yr old daughter who was 2 years ahead in math in the International Baccalaureate program has missed almost two years of school as a result of lyme disease.  Lyme disease for her, included infections with Borrelia, Babesia duncani, Ehrlichia, Bartonella, Chlamydia pneumoniae, and probably mycoplasma infections.  The physicians do not know how to recognize the signs and symptoms of lyme disease and even if they do are totally unaware of how to treat it. Most have not done any research on the illness and have not heard much about it in medical school.  Most of us are mis-diagnosed with other illnesses because lyme like syphillis, another spirochetal infection can mimic the symptoms of so many other diseases.  If indeed the physician does know that it is lyme disease he or she may purposefuly mis-diagnose because they do not want to risk losing their medical license for treating a lyme patient.  My daughter is one such case who was mis-diagnosed many times even though she had a CDC postitive result for these infections.  My Infectious Disease physician told me she would test me and then if I was positive to go to NY and not come back to her practice.  We are modern day lepers harmed by our uncaring Government and left to die without treatment.  Many insurance companies, Anthem Blue Cross and Blue Shield being the major culprit are denying much needed treatment for lyme and related bacterial infections.  This is a travesty in one of the richest countries in the world.  The Infectious Disease Society, which comprises a group of Infectious Disease Physicians around the country have promulgated guidelines for treatment which are woefully inadequate. Insurance companies are using those guidelines to deny costly IV treatment for people with grave neuroborreliosis.  These bacterial infections known as lyme disease are a serious illness and threat to our Country.  We need to have unbiased research from non IDSA members to cure this disease.  Some IDSA members are working on a new vaccine for lyme so that they will profit from this venture.  The prior vaccine that was developed was pulled from the market not due to lack of demand but because it caused permanent lifelong arthritis in people with a certain allele pattern.  FOR PROFIT MEDICINE is the problem here.  The Attorney General of CT, and Senator elect of CT Richard Blumenthal sued the IDSA and won because they promulagated these guidelines and had conflicts of interest with pharmaceutical companies and insurance companies.  Please pay attention to what is happening to our citizens and get involved.  We are the new AIDS patients.


I wish people would realize it is contagious. How do you think Debbie MacCabe’s entire family got it? When I go to the support groups, most husbands and wives have it. The Lyme literate doctors all tell me it’s contagious, it’s present in all bodily fluids, including semen, and it is a close relative of syphilis.

So why do they pretend you can only get it from ticks?

I CALLED the CDC when my husband first had the bulls-eye rash and they told me not to worry. Now I have it, too. Thanks, government!


If only it were as simple as just getting rid of the deer! I’m thrilled to see this panel and what they’re doing, and hope other states take notice.


Get rid of the deer in Loudoun, and Lyme Disease will be halted.

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