Lyme Disease Doctors In Michigan – LANSING—No one can tell Breanna Ramos her symptoms aren’t real ‒ from the crushing exhaustion to the pain that sometimes sent her to the floor.
But recently in a Lansing courtroom, the 26-year-old Clarklake woman and others revealed what they said were the misdiagnoses, mistreatments, confusion, disrespect and doubt by medical professionals before they were finally told — sometimes, years later — they were infected with tick-borne Lyme disease.
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Lyme disease has been on the rise in Michigan for more than a decade, but many cases go uncounted because they don’t meet diagnostic guidelines set by the U.S. Centers for Disease Control and Prevention.
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A missed diagnosis can lead to serious, lifelong consequences. In a trembling voice, Ramos told lawmakers how she suffered for more than 10 years from a Lyme disease infection that caused chronic, debilitating problems.
She was one of a group advocating for bills at a House Health Policy Committee that would require doctors to test more comprehensively for the disease, while also protecting doctors from professional sanctions for administering a controversial treatment that some patients and doctors on it insistence can be effective.
But the legislation is facing pushback from a wary health care industry and a surprising opponent: the Michigan Lyme Disease Association.
The MLDA says it was not consulted on the drafting of the bills, citing the legislation as vague, poorly written and lacking funding to cover additional costs, association secretary Carrie Nielsen told lawmakers at the same hearing.
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Of particular concern is House Bill 4605, which protects doctors from disciplinary action when they prescribe a treatment that involves repeated infusions of antibiotics to eliminate Lyme disease.
Blue Cross Blue Shield of Michigan argues the bill could require coverage for controversial treatments that have been “associated with serious complications.”
Both the CDC and the Infectious Diseases Society of America warn that high doses of antibiotics have not been proven effective in fighting Lyme and – worse – can lead to potentially life-threatening problems such as a condition caused by a bacterium, Clostridium difficile, which can lead to diarrhea or something more serious, such as a life-threatening inflammation of the colon.
The debate extends beyond treatment. “Chronic Lyme disease” itself is controversial and rejected by many in the scientific community.
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In most cases when Lyme disease is diagnosed, it can be treated quickly and effectively with oral antibiotics. In some cases, symptoms caused by Lyme disease—fatigue and pain, for example—can persist for months or years even after treatment, a condition known as Post Treatment Lyme Disease Syndrome (PTLDS).
In contrast, Chronic Lyme disease is often used to describe people with similar and long-lasting symptoms but who may show “no clinical or diagnostic evidence” of a Lyme infection. Without a positive result from the CDC’s recommended test, the cause of their symptoms may remain in doubt.
“This bill is too loosely worded,” said Nielsen of the MLDA. “It allows patients to benefit without oversight or consequences for doing so. And it doesn’t protect patients.”
But those who have struggled with debilitating symptoms for years told the House Health Policy Committee their experience of fighting doctors to get a diagnosis and ultimately treatment for Lyme disease shows the need for more thorough testing and flexibility for treatment.
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Ramos said she was met “with condescension and doubt” and insurance complications when she demanded to be tested. The first of the two-part test favored by the CDC did not detect Lyme. It was only after she received the second-stage test – which she said was given by an independent laboratory – that the disease was confirmed.
“I knew constant pain and constant fear that it would get worse, that every good moment was taken from an ever-shrinking pool, that my pain was hurting the people I love,” Ramos said during the trial.
“I was told I was psychosomatic. I was told it was anything and everything. I couldn’t be helped.”
“I was told I was psychosomatic. I was told it was anything and everything. I couldn’t be helped.” — Breanna Ramos
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She and other witnesses testified about doctors misdiagnosing their symptoms as fibromyalgia, interstitial cystitis or an eating disorder.
“I was told I had anxiety, that I had depression,” said Sam McLaren-Fahey, a Macomb County resident who began showing symptoms in 2014 of what she said was later diagnosed as Lyme disease. “I was told that I didn’t need actual testing – that I just needed to talk to someone.”
State Rep. Karen Whitsett (D-Delta Township), who introduced four of the bills and also testified, said Lyme disease left her without hair and eyelashes and unable to sit up for more than five minutes.
Whitsett said the disease shattered her focus, making it difficult to drive or even hold a conversation. “Lyme takes your life,” she said.
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But to understand the debate, you must first understand the development of devastating diseases that begin with a blood-sucking ectoparasite about the size of a sesame seed.
A black-legged tick, also called a deer tick, can transmit the Borrelia burgdorferi bacteria to a human host after it bites, attaches to the skin, and begins to feed. The process can take days. The first sign of infection may appear as a tell-tale ring, called erythema migrans, or a rash. Other symptoms include fever, headache and fatigue.
In general, federal guidelines for a national detection database for Lyme disease require that a patient test positive for Lyme in both steps. (Ramos only tested positive in the second phase, she said.)
In the first step, patients’ blood is tested for antibodies against the tick-borne bacteria. Because false positives are not uncommon, a second step, known as the Western blot test, refines the search for antibodies specific to various proteins of B. burgdorferi.
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Timing is crucial. The first, ELISA test can also give false negative results. If performed too early, a person’s body has not had enough time to produce antibodies against the bacteria. If it is carried out too late, and the antibodies have waned.
Sometimes there is nothing to indicate a need for a test until it is too late. The eye rash that often drives patients to the doctor can go unnoticed on the scalp or on the back. And some patients with the disease don’t get a rash at all.
Ramos, who started experiencing crushing fatigue when she was 14, assumed it was normal – “teenagers are exhausted all the time,” she said.
“People assume you have to be camping, that you have to be in the backwoods somewhere,” to be infected, said Ramos’ mother, Jamie Ramos.
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This uncertainty means Lyme disease can go untreated for months or years, allowing the infection to attack muscles, the heart and the nervous system, making even simple tasks difficult.
Ramos’ fiancee said they keep their thermostat at 63 degrees because heat makes Ramos’ symptoms worse. With limited energy, she must choose her activities carefully ‒ help in their garden or cook dinner?
And even then, Ramos says that for every single thing she does, she will “pay a price” in intense fatigue or pain.
That pain is part of the “hidden burden that isn’t necessarily reflected in health care costs…that comes from a chronic illness like this,” said Caleb Smith, her fiance. “It’s often not mentioned, but it’s very important.”
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Michigan is far from alone in its struggle to contain the disease. About 30,000 Lyme diagnoses are reported nationwide each year, but studies suggest the true number is likely closer to 300,000, according to the CDC.
Linda Lobes, the longtime president of the MLDA, said doctors mistakenly treated her for epilepsy and multiple sclerosis before she was diagnosed with Lyme disease in 1992 — three years after a tick bite while vacationing in northern Michigan. Other treatments, including oral antibiotics, did not help her; only repeated infusions of antibiotics helped, she said.
But she also said she worries that long-term antibiotics aren’t the answer for every patient. “There are so many variables” in testing, diagnosis and treatment, Lobes said.
“You can be undertreated, but in some cases you can also be overtreated. That’s what makes it so difficult.”
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This is one of the many reasons, Lobes said, that she and the association’s board members unanimously decided to oppose the package of bills.
The bills, Lobes said, don’t sort out, for example, who would be required to report cases ‒ The doctor who first suspects Lyme? The lab that confirms it? A doctor who treats the symptoms? And neither bill addresses the problem of unreliable Lyme disease testing — the first step in treatment.
The state recorded 262 suspected or confirmed cases of Lyme last year, compared with 103 suspected or confirmed cases in 2009, according to the Michigan Department of Health and Human Services.
Dr. In Charlevoix recently, Joshua Meyerson switched his computer to the Lyme disease risk map created by the state health department.
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Less than 20 years ago, only a few counties in the Upper Peninsula and the southwest corner of the state were at risk for Lyme disease. Now, a series of bright red “dangerous” counties –
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