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Maine patients want labs to provide more Lyme testing data

The proposal would ensure physicians receive full diagnostic test data concerning tickborne diseases.

MAINE, Maine — We are at the halfway point of Tick Week. NEWS CENTER Maine is taking a closer look at the only FDA-approved laboratory test for Lyme disease and co-infections: a blood test that detects antibodies in the body's response against the disease. But many experts say the two-step test recommended by the U.S. Centers For Disease Control and Prevention can often miss Lyme early on when treatment is most effective in stopping the infection.   

A number of patients who spent years trying to find out if they have Lyme are asking Maine lawmakers to ensure that doctors receive more diagnostic data with test results to help make the correct diagnosis.

Amy MacDonald was a highly successful real estate agent when she began to lose her vision in her left eye overnight. She started getting other symptoms, like a loss of feeling in her body and a rash that didn't look like the typical bullseye rash from a tick bite. 

The mother of three never found an embedded tick. She did take three different tests for Lyme: All came back negative. Meanwhile, her symptoms got worse. 

"I had lost the feeling in the entire right side of my body. They were trying to figure out what was going on. I had an MRI, cat scans, and a lumbar puncture," MacDonald said. 

After three years of suffering, she had another test that was more comprehensive for Lyme. The test showed markers for the disease, but it didn't meet the CDC's requirement for a positive test. But the results combined with her symptoms finally led to Lyme diagnosis. 

"My youngest daughter doesn't even remember what it was like before I got sick. All of this is preventable for other Mainers if doctors are given the raw data from labs they are already producing when testing," MacDonald explained emotionally.

MacDonald and a number of patients are pushing for a bill, LD 906, that would require labs in Maine to provide all of the clinical data from standardized blood tests for Lyme and tick-borne diseases. Supporters say providers need all of the data to ensure patients get early antibiotic treatment within three to four weeks of infection.  

Aaron Bolster testified before the legislature's Health and Human Services Committee that his daughter, Logan, had to drop out of Husson College after experiencing chronic pain, lethargy, and depression. After testing negative for Lyme three different times, she underwent unnecessary colonoscopies and other procedures, trying to find answers.  

"Not only did it take a lot of time to define the Lyme disease, but it was expensive, costing my family $25,000 out of pocket to date," Bolster said.

After a number of negative tests, Jon Cole was misdiagnosed for years and suffered from neurological problems to swollen joints. 

"If I had been able to get those results earlier, I could have started antibiotics therapy earlier," Cole told lawmakers. 

Dr. Sean McCloy is an MD at the Integrative Health Center of Maine. He has treated Lyme patients for 18 years. He said the CDC has recommended a two-step antibody testing for Lyme disease and other co-infections for more than 30 years. 

"Unfortunately, no one has changed the CDC criteria since the '80s, and labs these days are still using that criteria that were never made for real-world medicine," McCloy explained.

The first test is called the ELISA, which looks for antibodies against Lyme. If it's positive, another more sensitive test, called the Western Blot is performed. He said in the first month of infection, standardized tests can be frequently wrong and can miss Lyme up to 40 percent of the time.  

"The problem with the Western Blot is that other infections can also cause some of the antibodies or bands to be positive, and oftentimes you don't get the bands you need for that test to be positive," McCloy said.

McCloy follows the CDC's recommendation that doctors who suspect Lyme based on symptoms should prescribe antibiotics even if the test for Lyme is negative. McCloy, who uses out-of-state labs that relays more comprehensive data, supports providing the full diagnostic data on test results, especially for doctors who may be reluctant to diagnose patients without a positive test. 

"At least by getting the information they educate themselves and learn how to read the western blot to a greater detail and help those patients make a better decision," McCloy said. 

NEWS CENTER Maine reached out to a number of labs operating in Maine, including NorDx Diagnostic Laboratories and Lab Corp about the bill. We did not get a response from Lab Corp.

NorDx is a member of MaineHealth's Integrated Health System. 

"While the specifics of this bill are still being worked out, MaineHealth has serious concerns about any attempt to legislate medicine," a MaineHealth spokesperson told NEWS CENTER Maine in a statement. 

Nancy Beardsley, the acting director of the Maine Centers for Disease Control, voiced opposition to the bill in a letter to the HHS committee.

"Providing all the laboratory data related to reporting tickborne disease results would cause a significant workload increase resulting in increased costs to the laboratory and patients. All medically important information is already required to be reported and the inclusion of all non-medically pertinent data may cause confusion related to the results," Beardsley wrote. 

As for MacDonald, after undergoing treatment, she was able to resume her real estate career. She often speaks publicly about the dangers of Lyme disease, but she doesn't want it to take years for other patients to miss a chance to get early treatment and get rid of the disease.

"I am making improvements, but the damage that was done is hard to repair," MacDonald added. 

New tests for Lyme are being developed but will have to be approved by the FDA before the CDC makes any recommendations.

Members of the legislature's HHS committee voted Wednesday to carry over LD 906 to next year's session. The bill's sponsor, State Rep. Dan Shagoury (D) Hallowell tells News Center Maine, lawmakers to have until the next session to come up with language.  "I don't want to underestimate the difficulties of coming up with the appropriate workable language but I am grateful for the additional time to try," Shagoury said.

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