When I finally arrived at the door of a Lyme Literate Doctor (LLMD), I was surprised to learn that in addition to Lyme, I have an infection of the red blood cells called Babesiosis, caused by a tiny parasite.
Symptoms can include fatigue, drenching sweats, muscle aches, and nausea; the infection often begins with a high fever. It can also attack the spleen. I got mine from a tick bite. People also become infected through blood transfusions.
The thing is, if you are treated for Lyme but you also have this co-infection going undetected and untreated, your health won’t improve, as seen in a recent television program about a young girl in Maryland who wasn’t improving when treated for Lyme alone.
Turns out she had a strain commonly thought to exist only on the West Coast. Her doctor just wrote a blog post at lymemd.blogspot.com to clarify the show’s script:
“My patient, Brittany’s story was recently featured in the Animal Planet’s “Monsters Inside Me.” The producer told me he would shoot me a copy of the episode before it aired so I could correct mistakes. This did not happen.
One of my patient documents his experience with two Johns Hopkins infectious disease doctors on youtube, regarding his B. duncani infection. In his case, B. duncani was proved not only by an antibody test but also positive by gold standard RNA and DNA tests, FISH and PCR. The ID doctors did not know what he was talking about and one offered to call a psychiatrist.“
Okay, I’ll resist the chance to veer off and address doctors who call us crazy. Many of us have been there. But for the record, I am once again both dumbfounded and infuriated.
Back to the topic at hand, it’s clear that it isn’t just inaccuracies in Lyme testing that are affecting people’s chances of getting treatment and getting well. If doctors don’t recognize that a particular strain of this co-infection is in their region, they won’t treat it when it shows up on a test. Heck, apparently at least some of them won’t test for that strain in the first place.
How crazy is that? Not any crazier than doctors refusing to treat patients for Lyme.
LymeMD points to a study in the American Society of Microbiology, Clinical Vaccine and Immunology, November 2010, writing:
“They looked at ‘clinical specimens’,’sera sent for diagnostic purposes and random sera of donated blood, from different geographic regions of the United States, including my state of Maryland in the years, 2008, 2009.
It turns out that B. duncani was widely distributed across the US. Seropositivity for B. duncani was 27% of clinical specimens and 2% of blood donor specimens. B. microti was found only in 0.4% of donor specimens. If my math is any good B. duncani was 500% more prevalent than B. microti nation-wide.“
See LymeMD’s blog for his projections about how Babesiosis numbers relate to the numbers of cases of Lyme disease. Numbers that are potentially huge compared to current reporting of lyme cases nationwide—not surprising to us, but why does the medical community seem to be largely in the dark?
Clearly, in addition to fighting to educate people everywhere about Lyme testing inaccuracies, we’ve got to get the word out about testing for Babesiosis and other tick-borne infections, including those known and new ones coming to light.
And that starts with making sure our own diagnosis is complete.
For more, see a comprehensive interview with Dr. Richard Horowitz here.