A previous article on Digital Journal highlighted the increase in the number of cases of Lyme disease throughout the United States. As a result of the story Carl Tuttle of the New Hampshire Lyme Misdiagnosis website got in touch with me.
According to the figures from the New Hampshire Department of Health and Human Services, in 2009 there were 106 cases per 100,000 reported in the state, but it it thought that thousands of cases may either go unreported or go unnoticed due to faulty diagnostic tests.
Carl Tuttle told me more about his family's personal experiences of Lyme disease:
"Our “perspective” on Lyme disease comes from first- hand experience as all family members have been afflicted with this disease. What we find most disturbing is the fact that our family practitioners knew absolutely nothing about Lyme disease, had a universal misunderstanding of lab results and a universal dismissal of Lyme symptoms. None of our family members presented with a bulls-eye rash and only our daughter recalled a tick bite. In the absence of the bulls-eye rash, the likelihood of obtaining a timely diagnosis in a state with the highest reported number of Lyme disease cases is virtually nonexistent." (These comments were previously published here)
In an email, Dr.Kotsoris, neurologist and medical advisor for Time for Lyme (TFL), explained how difficult Lyme disease is to diagnose if patients don't have obvious symptoms. She said:
"Currently, the ELISA assay is unreliable more than 50% of the time and may not fulfill CDC criteria for # bands on the Lyme Western blot to test "positive." Therefore, extremely difficult to diagnose if did not have rash or strong history of tick bite."
And as is explained in a press release from Time for Lyme, despite the increase in incidence of the tick-borne illness, Lyme disease remains “undercounted and underfunded”, receiving only 10% of government funding.
I asked Dr.Kotsoris what she felt were the reasons behind the lack of funding for Lyme, she replied:
"Not sure--perhaps because such a controversial disease, highly politicized. And the ELISA tests are unreliable"
The press release also details the difficulties of getting a proper diagnosis. The Western Blot and ELISA tests are widely used but might not pick up the bacterial strain of Lyme disease. This could mean that hundreds of thousands of cases go undiagnosed in the United States. In the press release Dr. Kotsoris explains:
"There is a 40-60% false negative rate if one takes a test too soon after a tick bite because the immune system has not had time to produce the antibodies the test is looking for."
In an email, Dr.Kotsoris told me:
"Hopefully, one day soon we'll have a standard diagnostic test. Would be great if we could culture directly from blood, but its extra-vascular compartmentalization precludes this. Working on better tests with the use of mass spectroscopy technology."
Talking about the misdiagnosis of Lyme, Carl Tuttle had this to say:
"The misdiagnosis of Lyme disease is rampant in New Hampshire fueled by faulty diagnostic tests. The first line screening test for Lyme (Elisa) is producing false negatives and everyone is told they do not have Lyme disease. A follow-up Western blot test which is much more sensitive is forbidden when the Elisa is negative. The Western blot is only allowed after a positive Elisa to rule out a false positive. How do we rule out a false negative?? We don’t!!" *
"Faulty diagnostic tests are creating confusion within the medical community causing the physician to miss the narrow window of opportunity for successful short term treatment which is now creating a backlog of late stage Lyme disease patients. After watching the New Hampshire Chronicle episode, “Living with Lyme” Newport resident Lin Haselton was able to figure out that her husband’s joint pain/swelling and fatigue of a year and a half was a result of undiagnosed Lyme disease." *
In an email Carl Tuttle explained to me that they are trying to pass House Bill 295. The bill would protect doctors in New Hampshire who treat Lyme disease with long term antibiotics. Carl says that last year’s bill passed in the House of Representatives but failed by one vote in the Senate.
Commenting on the bill, Dr.Kotsoris said:
"TFL recognizes that long term antibiotics are not the total answer and that more effective therapies need to be found. That being said, if this bill is similar to others that have passed, it is important to protect our qualified physicians and allow them to practice medicine in their best judgment."
This year Carl Tuttle has been invited to testify. In his testimony Carl details his own experience of Lyme. He says:
"For twelve long years I chased an unresolved fatigue and ended up bedridden on oxygen before finally diagnosed with Late Stage Lyme Disease in the fall of 2008. The loss of verbal fluency and total exhaustion ended a twenty five year professional High Tech sales career."
The testimony also explains how Lyme disease has affected Carl's family and highlights the issue of faulty diagnostic tests.
Carl finishes by telling me:
"The New Hampshire Lyme Misdiagnosis website has been a year long attempt to alert our public health officials regarding faulty Lyme diagnostic tests which are the root cause of so many disabled patients based on the stories we hear at the Lyme support group meetings. The majority of physicians here in New Hampshire (and around the country) have no idea how inaccurate these tests are. A two year study out of Johns Hopkins concluded that Laboratory tests for Lyme disease were only 50% accurate at best."
A video from the NH Chronicle called "Living with Lyme" can be found here.
* These quotes were obtained via email but were previously published here.