Lyme Disease Forum Draws Huge Crowd

Make no mistake about it;  anyone who spends time outdoors in Northern Virginia is at risk for Lyme disease.

The prevalence of this serious tick-borne illness was illustrated last night, as approximately 300 people packed the Loudoun County School Board auditorium for a Lyme disease forum hosted by Congressman Frank Wolf (R-VA.)  When asked how many members of the audience suffered from chronic Lyme or have had Lyme, hands went up from more than half the crowd.

Wolf said he decided to hold the forum after meeting with two Fairfax County residents who suffer from chronic Lyme.

"Incidence of Lyme disease are rising rapidly in the Northern Virginia area," Wolf said.  "The more we're outdoors, the more we're susceptible to the tiny black-legged or deer tick."

Doctor Jorge Arias, who runs the Disease Carrying Insect Program for the Fairfax County Health Department, provided information on deer ticks and how they transmit the bacteria that causes Lyme to humans.

According to Arias, there are 15 tick species native to Virginia, but only the tiny deer tick carries Lyme causing bacteria.  The ticks obtain the bacteria early in life when they feed on the blood of white-footed mice, Arias said.  It is typically deer ticks in the nymphal stage, when they are small and very hard to detect on the human body, that transmit the bacteria to humans.  The infection occurs most commonly in May-August when nymphal ticks are most active.

According to Arias, deer do not carry Lyme causing bacteria and are, in fact, immune to it.  Deer are, however, the primary vehicle transporting ticks from wooded areas to residents' yards and other areas of human activity.

Arias and Loudoun County Health Department Director Dr. David Goodfriend emphasized that residents need to take steps to "tick proof" themselves and their properties.

"Our whole region is endemic," Goodfriend said.  "In Loudoun County, many of our back yards are tick-infested areas."

Suggestions for keeping the ticks away included the use of insecticide, placing a gravel or woodchip barrier between wooded areas and lawns, using insect repellents that contain Deet or oil of lemon and taking steps to prevent pets from bringing ticks into the yard or home.  Covering the body with light-colored clothing was also highly recommended.  Tucking long pants into the socks helps keep ticks from finding a spot to attach to the body.

"You really look like a dork when you walk, but it protects you," Arias said.

Goodfriend emphasized the rising number of Lyme disease cases in Loudoun County and the need for residents to see a doctor if they suspect they may be infected.  He stated that annual reported cases in Loudoun rose from 29 in 1999 to 500 in 2007. 

Symptoms can occur once a tick has been attached to the skin for more than 30 hours.  They can, but do not necessarily, include a "bullseye" rash at the site of the tick bite and/or flu-like symptoms.

"If you think you have Lyme disease, see your doctor because the symptoms go away on their own, but the infection doesn't go away,' Goodfriend said.

False negatives are common in Lyme disease testing, and Goodfriend said patients need to make sure their doctors order a "two-tiered" test.

Many members of the audience were people who did not get a diagnosis and treatment for Lyme in its early stages and who said they now suffer from chronic Lyme.

One Waterford resident said that his wife and three children all suffer from chronic Lyme but that it took them 15 years to get a diagnosis.

"I could wallpaper the walls in our house with negative Lyme tests," he said.

Symptoms of Lyme's late manifestations or chronic form can include Bell's palsy, meningitis, shooting pains and changes in heart rhythm.  Another speaker at the forum, Dr. Samuel Shor of Reston, said he has been studying Chronic Fatigue Syndrome since the 1980s and believes that many CFS cases are related to Lyme.

"The more I learned, the more I became convinced that what the larger medical community is calling Chronic Fatigue Syndrome... is Lyme Disease," Shor said.

The Reston-based doctor focused much of his presentation on controversy over Lyme diagnosis and treatment between the Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS.)  The latter advocates a more aggressive approach to diagnosis and treatment.  Shor said he believes IDSA guidelines need to be re-assessed.  He said he has had success treating CFS patients for Lyme under ILADS guidelines.  Shor treated one disabled patient with antibiotics for 15 months, and the man has now returned to work.

"ILADS directed management has had a positive impact on outcomes," Shor said.

For more information on Lyme and its prevention and treatment, go the www.fairfaxcounty.gov/fightthebite or to loudouncounty.gov.  Information on Congressman Wolf's efforts to fight Lyme can be found on his website.

Comments

[Arthur]

Very informative post. While we don't have the number of cases in Michigan that you do in Virginia, I am still much more careful then I used to be. It seems we are seeing more and more ticks around these parts as well.

[Jeff]

Good info for everyone... hope you are recovering and that, if it is lyme disease, that you caught it in time.
My friend has had it for years, and it has really taken a toll on his body and mind.

[jean krueger]

Can you have lyme with a negative western block only band 41 positive but have severe headach, no energy and arthritis of the knees for 6weeks.

[Leesburg Resident]

Yes, yes and yes! That was my band, P41, with LabCorp, that was showing, with very, very severe Lyme symptoms. I did get IGENEX testing that showed more bands, and that helped to reinforce treatment, although the symptoms are the same no matter the testing. P41 showing indicates inflammation, which is of course part of the Lyme bacteria invading. I encourage you to get IGENEX testing that will further pinpoint the degree of co-infections, and how long you've had it. Best regards.

[ChrisMcLernon]

I live in Springfield, and my youngest daughter got lyme in 1996. Since then, my oldest daughter and I have been diagnosed with Lyme and Babesia. I have been treated, but am currently relapsing. The expense for treatment has been very high, as we've had to go outside our HMO to get treatment. My dog also has recently been diagnosed with Lyme. That makes 75% of the people and 50% of the dogs in my home affected by Lyme. This is a shocking statistic! I hope that our representitives understand how serious this is!

[Nova Girl]

How do you get blood sent to Igenex for testing? I'm in Arlington.

[Matt]

I would suggest checking with your local health department.