“Living Well With Lyme Disease”

Despite being the most common vector-borne disease in America, myths about Lyme disease abound. So when we caught a U.S. News & World Report article with the somewhat provocative title “Living Well With Lyme Disease,” we simply had to take a look at the facts. And while the article deserves some credit for acknowledging the existence of chronic Lyme, which many sources refuse to do, the misinformation is legion.

 

 

Lyme

1. Transmission Time

The article claims, “If the tick latches on to a human host, it usually takes anywhere from 48 to 72 hours for the bacteria to travel from the tick’s gut to where it makes contact with human blood and results in transmission, and in turn causes Lyme disease.” This false but surprisingly resilient myth has been circulating the internet and even repeated by doctors for decades. The truth is that no one knows the minimum time it takes for Lyme to be transmitted by a tick bite under a range of circumstances.

The CDC reports 36 to 48 hours as the average transmission time for Lyme, and that gives a false sense of security as well. Other peer review says Lyme disease risk is low, but possible, if ticks are attached for at least 24 hours. But other experts point out that no minimum time has ever been established for transmission of Borrelia burgdorferi. In fact, a number of circumstances mean risk of rapid transmission could be high: For instance, if you accidentally squeeze a tick while trying to remove it, spirochetes can be inadvertently injected. And if a tick has partially bitten an animal but fallen off, spirochetes can remain in the mouth parts and salivary glands, creating the potential for efficient transmission upon a second bite.

Finally, the microorganism matters. Different genospecies of Borrelia take more or less time to travel from the midgut to the mouth, and the deadly Powassan virus, though rare, can be transmitted by a deer tick in 15 minutes. Bottom line: Do not treat any tick attachment casually. Have the tick removed by someone who understands tick-removal techniques. And do consult with a Lyme literate M.D.

2. Number of Annual Cases

The article cites statistics from the CDC, which acknowledges that while state health departments report approximately 30,000 cases of Lyme disease in the U.S. each year, the true number of cases is closer to ten times that amount (approximately 300,000 per year). However, a survey of large commercial laboratories using 2008 data revealed that the number of annual cases was closer to 444,000. Since Lyme rates have increased in following years, we can extrapolate that the number of annual cases has too. In other words, Lyme is more widespread than the CDC reports.

3. Lingering and Persistent Symptoms

The article calls Lyme disease in its acute form “very easily treatable” and in its chronic form “manageable.” This attitude overlooks the experiences of many actual Lyme patients, some of whom see their health crater and lives derail for years. Evidence is hardly just anecdotal. A study from Johns Hopkins (which still uses the unfortunate term “post-Lyme syndrome” to describe patients still sick with Lyme) found disturbing inflammation in the brain scans of those who were chronically ill. The New England Journal of Medicine found patients who stayed sick were as impaired as those with congestive heart failure and sicker than those with type two diabetes. A patient-run study, called My Lyme Data, has documented patient financial hardship, late diagnoses, and devastating ongoing symptoms from pain to confusion for the chronic group.

4. The Bull’s-Eye Rash

The article claims that the erythema migrans bull’s-eye rash occurs in “70% to 80% of patients,” but this is wildly misleading. According to some studies, as few as 27% ever see or exhibit a Lyme rash. Depending on the study, estimates range widely. Even the CDC reports rashes in anywhere from 51%-87% of patients; in short, studies by a range of researchers fall all over the map—43% were said to have rashes in the state of Maine and less than 50% of children in Vermont. As to the famous bull’s-eye rash, it is even rarer, appearing in less than 20% of patients, studies show.

As long as readers keep in mind these missteps, there’s a lot of information in “Living Well With Lyme Disease” that may prove useful, particularly to those who are less familiar with this common tick-borne disease.