TOUCHED BY LYME: CDC fires another salvo against "chronic Lyme"
Latest scare tactic warns that chronic Lyme diagnosis can lead to “permanent damage or death.”
The CDC has launched yet another volley in its continuing propaganda war against the Lyme community. This time, it’s a new anti-chronic Lyme video posted on YouTube and the CDC website.
The video presents the case of “Robert,” who had a lot of bad symptoms for which his doctors couldn’t find a cause. Headaches, joint pain/stiffness, memory loss, and numbness and tingling in both hands. As Robert describes it, “a lot of medical professionals were confused by my health condition.” Many doctors even said it was “all in his head,” presumably dismissing him without looking further.
Eventually, a doctor diagnosed him with chronic Lyme disease and began treatment. We are not told how this diagnosis was made. Positive lab tests? Clinical symptoms consistent with Lyme disease? History of a bull’s-eye rash? One assumes such findings would factor into the diagnosis, but the video is silent on this.
According to Robert, in the midst of Lyme treatment, he suddenly lost vision in one eye. An MRI showed that he had a tumor on his pituitary gland, which evidently caused the problems with his eyesight and (the video implies) all of his other issues as well.
The lesson the CDC wants us to take from this? That if only Robert hadn’t been diagnosed with chronic Lyme, he wouldn’t be in a world of hurt today. The CDC bluntly states: Robert now has permanent heart and kidney disease, joint pain, and severe obstructive sleep apnea as a result of the incorrect diagnosis and treatment. The strong implication is that the doctor who diagnosed Lyme ruined his life. (How about all the “confused” physicians Robert consulted first, who also failed to diagnose the tumor? Do they share blame? The video is silent on that, too.)
The CDC goes on to ominously warn that “an incorrect diagnosis can lead to permanent damage or death.”
Now, wait a gosh-darn minute, CDC.
What about all the permanent damage and death that can result when Lyme disease itself is misdiagnosed? A couple of years ago, a New York teenager dropped dead from Lyme carditis—when Lyme bacteria invades the heart—after being told by his doctor that he didn’t have Lyme disease. Shortly after that tragic case, the CDC itself reported on more fatalities from unrecognized Lyme carditis in seemingly healthy people.
Folks with Lyme disease know all about misdiagnosis. Pretty much any Lyme patient you talk to has a horror story about it. Either they were diagnosed and treated for something they didn’t have (multiple sclerosis, fibromyalgia, depression, or any of a host of other conditions) or they were told there was “nothing wrong” with them and denied treatment altogether. Even those with a known tick bite and/or a bull’s-eye rash have often been told “it can’t be Lyme, there isn’t any around here” or “that’s a spider bite” or “looks like ringworm.”
Getting back to the CDC’s video, I’d like to offer a credible alternative scenario: What if, unbeknownst to Robert, he had a tumor growing in his head at the time he happened to get bitten by an infected tick, having the misfortune to develop Lyme disease and a growth on his pituitary at the same time? The resulting symptoms could potentially “confuse” a lot of medical professionals, don’t you think?
The CDC’s chronic Lyme denialists don’t cotton to such nuance. They just want to lay the blame on the Lyme doctor. Period. They don’t want to muddy their message by pointing out that misdiagnosis of ANY condition can have serious implications, whether you actually have brain cancer, a duodenal ulcer….or Lyme disease..
At the end of the video, the viewer is told that if you believe you might have chronic Lyme disease, “See an infectious disease specialist who uses FDA-cleared, fully validated tests.” (Yeah, you know the ones. Like the FDA-approved ELISA test that’s been demonstrated to miss as many Lyme cases as it finds. Click here to read more about how the FDA wants to restrict your ability to be tested for Lyme disease.)
If the CDC really wanted to reduce the number of people diagnosed with chronic Lyme, they ought to make it easier for people to get properly diagnosed and treated for acute Lyme—before it has a chance to turn chronic. How about a YouTube video about that?
Once again, we are left to ponder this question: Why does the agency charged with protecting our health instead spend so much time and effort trying to undermine it?
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org. On Twitter, she’s @dorothyleland.