LYMEPOLICYWONK: Misdiagnosis of Lyme disease as MS –MyLymeData Quick Bytes
This is the first in what I hope will be a series of “quick bytes” (2-minute videos) of some of the preliminary results we are getting from MyLymeData. You can choose to watch the video or read the blog. Today I am going to talk about what we are finding with misdiagnosis. Most of us know that Lyme disease is commonly misdiagnosed as chronic fatigue, fibromyalgia, or depression. But did you know that 20% are misdiagnosed with uncurable progressive neurologic diseases?
MyLymeData is the patient registry launched by LymeDisease.org in November 2015. We currently have 4000 people enrolled in MyLymeData. Our goal is to reach 10,000 enrolled so we’re well on our way. One of the things we are using MyLymeData for is to find out what is going on with chronic Lyme disease and we do this by asking the patients directly. This blog is based on data from MyLymeData.
We asked patients in the MyLymeData registry if they were initially misdiagnosed with another illness. Unfortunately, most of these patients report that they were initially misdiagnosed and roughly 20% of those with chronic Lyme disease were initially misdiagnosed with a neurologic disease. 14% of chronic Lyme patients report being initially misdiagnosed with MS and roughly 2% are misdiagnosed with other neurologic diseases, like ALS, Parkinson’s and Multiple systems atrophy.
Now you might think no harm/no foul—so long as they eventually correctly diagnose and treat the Lyme disease.
But that’s not true.
For one thing neurologic Lyme that manifests as these diseases causes neurologic damage, which may continue to progress until it is properly diagnosed and treated. Even with treatment, physicians report that previous damage may not be reversible.
And the treatments for infectious diseases are very different than those for diseases like MS. MS patients may receive steroids to suppress the immune system. But studies have shown that steroids are the last thing you want to give someone with an infection. That’s because when the immune system is suppressed, the infection is allowed to essentially run rampant. Patients with Lyme disease who are given steroids become very ill.
It’s important that with neurologic conditions in particular that Lyme disease be ruled out as a causing factor so that the proper treatment can be provided to the patient as early as possible to prevent unnecessary neurological damage.
Let me end by thanking the 4,000 patients who have enrolled in MyLymeData so far. If you have Lyme disease and have not enrolled in MyLymeData, please do so today.
Let us know your experience.
Please let us know what you think of MyLymeData Quick Bytes by posting a comment to this blog.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at firstname.lastname@example.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient centered big data project, MyLymeData, please register now.