Day 15: What You Need to Know

Pacific Coast ticks. Photo source: goingslo, Flickr, Creative Commons.

Pacific Coast ticks. Photo source: goingslo, Flickr, Creative Commons.

1. When hiking, try to stick to trails and avoid walking through low bushes and long grass. Avoid tick-infested areas, such as leaf litter under trees. Don’t sit on stumps or fallen logs.
2. Try to wear long pants, long sleeves, a hat and gloves. Tuck your pants into your socks.
3. Always do a body check after coming in from the outdoors.
4. Throw your clothes in the dryer as soon as you come into the house.
5. Shower immediately after throwing your clothes in the dryer.
6. When finished, do a second tick check.
7. If bitten, remove a tick as soon as possible with sharp-tipped tweezers. Gently grasp the tick near its head or mouth. Don’t squeeze or crush the tick, but pull carefully and steadily. Once you’ve removed the entire tick, apply antiseptic to the bite area.
removing tick
8. Save the tick, seal it in a plastic bag with moist cotton and send it out to Igenex to be tested.
9. Do your best to tick-proof your yard. Keep grass short. Clear brush and leaves where ticks live. Use an edger to create a barren zone around your yard. If you must have a woodpile, keep it in a sunny area.
10. Flulike symptoms in the summer are typically not the flu. If you are experiencing them, get to the doctor immediately to make sure it is not Lyme disease.
11. If you suspect you have Lyme disease, ask your to diagnose you clinically and not to rely on the presence or absence of a bulls-eye rash or positive Elisa and Western Blot tests. These tests are too insensitive to be the deciding factor and thus a negative test does not ensure one does not have Lyme disease.
12. If he/she does a test, ask him to do a Western Blot test from the California-based company called Igenex rather than the typical mardx marblot Western Blot.
Read the following article to see what bug sprays Consumer Reports recommends. The Best Bug Sprays

Survey for is trying to collect data for a document they intend to give to the FDA. I encourage those who have Lyme disease to fill out this survery to help them.

The current FDA approved tests for Lyme disease are notoriously insensitive and have been shown to miss more than 50% of Lyme disease cases. Currently, the FDA has approved 84 Lyme tests, which are produced by 28 companies. Approximately 90% of these are ELISA tests, which researchers have found to be too insensitive to be used for screening.

The Food and Drug Administration (FDA) has proposed regulating Lyme diagnostic tests. The types of lab tests the FDA is considering regulating include the Lyme tests manufactured by IGeneX that many patients rely on for accurate diagnosis. IGeneX and other labs like them will be the hardest hit by these regulations, which would leave only the FDA approved lab tests available to patients. Please help fight this fight on our behalf.

Lyme 101: Testing

There are two types of tests that are typically used to test for Lyme disease: the ELISA and the Western Blot. They are considered indirect tests in that they look for antibodies which are generated by the body’s immune system when a person has Lyme (B. burgdorferi) disease.

Patients with persistent Lyme Disease and other TBDs seldom have a positive ELISA test, possibly because they have ceased to produce the antibodies detectable by the test. The TBDA says that the ELISA test is only about 30-60% accurate. One problem, according to TBDA is that the ELISA test is not based on the specific Lyme bacteria strain that is most useful for accurate diagnosis. While a positive ELISA test is a reasonably reliable indication of infection, a negative test is useless.

Although it still misses a percentage of people with active Lyme, the Western blot test for Lyme Disease (LD) often shows infection when an ELISA test does not. According to the TBDA, the U.S. Centers for Disease Control (CDC) have set strict criteria for considering a Western blot test as positive for LD. These criteria were established for statistical analysis of the spread of the disease and were not intended to guide doctors in their diagnosis and treatment. The CDC surveillance criteria miss many people with LD. Doctors who use only the CDC guidelines to decide whether or not to treat leave many infected people without treatment. Even if the test results are not positive by CDC standards, any positive Lyme-specific “bands” are useful indicators of infection. Another test, PCR analysis, looks for the DNA of the Lyme bacteria in blood, urine, or tissue. Multiple tests are usually required before a sample is obtained that contains the bacteria. However, in recent years PCR testing has become extremely reliable when positive. Most doctors are unaware of this test.

Sources: TBDA, Igenex