On July 30, the Infectious Diseases Society of America (IDSA) will hold a day-long hearing in Washington DC to review its controversial 2006 Lyme disease treatment guidelines.

This hearing is part of an antitrust settlement Connecticut Attorney General Richard Blumenthal negotiated to address “serious flaws” in the IDSA guidelines.

Read the Attorney General’s press release on the guidelines.

The hearing is not open for public attendance but it will be streamed live over the Internet from the IDSA website. For more on the IDSA broadcast and the 18 patients, doctors, and research scientists who will testify, see the IDSA website

At the same time, the California Lyme Disease Association (CALDA) will provide up-to-the-minute summaries of the testimony on its new “IDSA hearing” blog, along with an open discussion forum. For more information, visit the CALDA website

This hearing is the first glimmer of hope that the definition, diagnosis, and treatment of Lyme will finally move out of the hands of one politically-motivated group and into the mainstream of accepted (and reimbursed!) medical care.

UPDATE: 7/25/09

From www.lymepolicywonk.org.

“The IDSA settlement agreement calls for an open public meeting which must be aired live over the internet. I have serious concerns about the restrictions the IDSA is imposing on people who want to watch the hearings and am discussing these with the Connecticut Attorney General’s office, but meanwhile I want to provide you with information so that if you want to watch you are prepared. The thought of live on the Internet was simply that people would click a url and be able to watch. But the IDSA has placed a number of barriers to access:

People are required to have two pieces of software in order to access the hearing, Windows Media Player and Microsoft Silverlight. While some people may have this software on their systems, others will need to download it. You-niversity, which is the service providing the webcast, has a test you can run to see if your computer can view the site. In order to run the test, you must provide a name and email. You can run this test today and should do this to make sure you will not have any problems.

http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974

Apple computers may not have Windows Media Player installed and Microsoft Silverlight is a relatively new software program. Technical support at You-niversity told me that their webcasts do not work with Microsoft Chrome browser but will work with Firefox and Safari. You-niversity.com websites says that it does not work with Apple, but a friend went through the process and got it working. If you have technical problems, they can call their support number (1-877-867-7300) and wait for a call back. Mine took ½ hour to call back.. Do not put this step off. You do not want to be calling the day of the hearing when the phone banks may be overloaded.

People must register for the event. This requires disclosure of private information. I assume this will be a name and email, but it could be more. I was told by you-niversity technical support that registration it is not “required” by their system, but IDSA is requiring it.

The registration period is 20 minutes before the event and begins at 7:40 am EST. From response to my survey, I would say we may have 3,500 people or more trying to register for this event. I do not know whether their system can handle this volume of people in that time frame, but I have serious concerns.”

Several Ixodes species of ticks are known to carry the Lyme bacteria in the U.S., mostly in the Northeast, Midwest, and Northwest, and all over Canada. An infected tick is called a vector, meaning it does not get Lyme Disease itself but is a carrier, transmitting it from one host to another. Common Lyme hosts are mice and other small rodents, deer, some birds, horses, dogs, and humans.

Tick Lifecycle

Ticks go through four life stages: egg, larva, nymph, and adult. The last three stages need a blood meal to survive. An uninfected tick feeding on an animal that has the Lyme bacteria spirochete, the corkscrew-shaped Borrelia burgdorferi, will ingest the bacteria and store it in its gut and salivary glands. Infected ticks stay infected throughout their two-year lifespan and can pass on Lyme to more than one host.

Both nymphs and adult ticks, found mainly in wooded and deep grassy areas, transmit Lyme disease. Ixodes nymphs, the size of a poppy seed, are active from May to August. Adults, about the size of a sesame seed, are most active in early Spring and late summer through the Fall.

Infected ticks transmit Lyme by staying attached to the host for 24-48 hours, allowing the bacteria to enter the host’s blood stream. However, the length of time of attachment depends on how host body movements affect the tick.

Unless you’re on the lookout for ticks on your body, you may not even know when you’ve been bitten. Being so tiny, the ticks are hard to see. And the bite is hard to feel.

Other Possible Modes of Transmission

There are two factors about Lyme you won’t see much written about – yet. First, some people with Lyme have never been around ticks. Some Lime Disease doctors and researchers believe that other biting insects like mosquitoes, fleas, mites, and flies can transmit the disease. If true, this greatly expands the possible geographic locations where one might get Lyme.

Second, most Lyme websites and most doctors say getting Lyme from another person is very rare to impossible. But they may be wrong. Lyme is often diagnosed in multiple members of a family, including young children.

Some doctors suspect that Lyme may be a sexually transmitted disease, similar to the spirochete Syphilis, suggesting that it could be passed by kissing, sexual intercourse, or from mother to unborn child during pregnancy. If true, this also greatly expands the places one could get, or pass on, Lyme.

We’ll certainly be monitoring the Lime disease news for scientific confirmation or disconfirmation of these two speculations and report it here.

• See Lyme Disease Symptoms for more on the stages of Lyme.
• See Getting Rid of Lyme for information on Lyme treatment.

People with chronic Lyme may or may not know how they got it. What’s important is getting proper treatment, which isn’t always easy.

If you’ve been diagnosed with Lyme Disease, we’ll soon be telling you about how membership on this site could help save both your health and your sanity.