A woman, a tick, and the fight in Michigan over Lyme disease

Breanna Ramos stands in the back yard of her home in Clarklake, where she lives with fiancé Caleb Smith. Ramos testified in front of a state health committee in early June about her struggle to get a medical diagnosis for what ultimately was identified as Lyme disease. “I felt powerful after,” she said of her testimony. (Bridge photo by Dale Young).

LANSING—No one can tell Breanna Ramos her symptoms aren’t real ‒ from the crushing exhaustion, to the pain that at times has sent her to the floor.

But in a Lansing hearing room recently, the 26-year-old Clarklake woman and others laid bare what they said were the misdiagnoses, misfired treatments, confusion, disrespect and doubt by medical professionals before they were finally told ‒ sometimes, years later ‒ they’d been infected with tick-borne Lyme disease.

Related: Lyme disease is spreading across Michigan. But why?

Lyme disease has been on the climb in Michigan for more than a decade, yet many cases are not counted because they fall short of the diagnostic guidelines set by the U.S. Centers for Disease Control and Prevention. 

A missed diagnosis can lead to serious, lifelong consequences. Ramos told lawmakers in a shaking voice how she suffered more than 10 years from a Lyme disease infection that triggered chronic, debilitating issues.

She was among a group advocating for bills at a House Health Policy Committee that would require doctors to more fully test for the illness, while also protecting doctors from professional sanctions for administering a controversial treatment some patients and physicians insist can be effective. 

But the legislation is encountering pushback from a wary healthcare industry and a surprising opponent: the Michigan Lyme Disease Association.

The MLDA says it was not consulted on the creation of the bills, and calls the legislation vague, poorly written, and lacking funding to cover added costs, association secretary Carrie Nielsen told lawmakers at the same hearing.

Of particular concern is House Bill 4605, which protects doctors from disciplinary action when prescribing a treatment that involves repeated infusions of antibiotics to knock out Lyme disease. 

Blue Cross Blue Shield of Michigan argues the bill could mandate coverage for controversial treatments that “have been associated with serious complications.”

The Lyme disease wars

Research shows such concerns are widespread in the medical community.

Both the CDC and the Infectious Diseases Society of America warn that high doses of antibiotics have not proven effective in fighting Lyme and – worse – can lead to potentially life-threatening problems such as a condition caused by a bacterium, Clostridium difficile, that may result in diarrhea or something more serious, such as a life-threatening inflammation of the colon.

The debate extends beyond treatment. “Chronic Lyme disease” is itself  controversial and is rejected by many in the scientific community

In most cases when Lyme disease is diagnosed, it can be quickly and effectively treated with oral antibiotics. In some instances, symptoms triggered by Lyme disease – fatigue and pain, for example – can carry on 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-standing symptoms but who can 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 can remain in doubt.

“This bill is too loosely worded,” said Nielsen of the MLDA. “It allows patients to be taken advantage of with no oversight or consequences for doing so. And it doesn't protect patients.”

But those who have battled debilitating symptoms for years told the House health policy committee their experience fighting doctors to get a diagnosis and ultimately treatment for Lyme disease demonstrates the need for more thorough testing and flexibility for treatment. 

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 didn’t detect Lyme. It was only after she received the second-stage test ‒ given, she said, by an independent lab ‒ that the illness was confirmed. 

“I’ve known constant pain and constant fear that it would get worse, that each good moment was taken from an ever-diminishing pool, that my pain was hurting the people I love,” Ramos said at the hearing. 

“I was told I was psychosomatic. I was told that it was anything and everything. I couldn’t be helped.”

“I was told I was psychosomatic. I was told that it was anything and everything. I couldn’t be helped.” — Breanna Ramos

She and other witnesses testified of doctors misdiagnosing their symptoms as fibromyalgia, interstitial cystitis or an eating disorder.

“I was told that I had anxiety, that I had depression,” said Sam McLaren-Fahey, a Macomb County resident who began showing symptoms in 2014 for 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 somebody.”

Among other things, the bills in the House Health Policy committee would: 

  • Require physicians who suspect Lyme disease to order a two-part test that confirms the presence of Lyme disease as well as written materials to patients notifying them the tests may give false results,
  • Establish a standardized testing, diagnosis and notification process for Lyme disease,
  • Allow doctors to prescribe the long-term antibiotic treatment for Lyme disease without threat of disciplinary action, except in cases of negligence.

State Rep. Karen Whitsett (D-Delta Township), who introduced four of the bills and testified as well, said Lyme disease left her without hair and eyelashes and rendered her unable to sit up for more than five minutes. 

Whitsett said the illness shattered her focus, making it difficult to drive or even hold a conversation. “Lyme takes your life,” she said.

The timing of testing 

But to understand the debate requires first understanding the development of crushing diseases that start with a bloodsucking ectoparasite about the size of a sesame seed.

The blacklegged tick, also called a deer tick, can pass on Lyme disease when it attaches to human skin to draw blood. (Photo Agriculture Research Service, U.S. Department of Agriculture)

A blacklegged tick, also called a deer tick, can pass on the Borrelia burgdorferi bacterium to a human host after it bites, attaches to the skin, and begins feeding. The process can take days. The first sign of infection may appear as a telltale ring, called erythema migrans, or a bulls-eye rash. Other symptoms include fever, headache and fatigue.

If caught early, the infection usually can be cleared up with common antibiotics.

Confirmation of the disease usually starts with a two-step test that’s less than reliable.

Generally, federal guidelines for a national tracking database for Lyme disease, require that a patient must test positive for Lyme in both steps. (Ramos only tested positive on the second stage, she said.) 
In the first step, patients’ blood is tested for antibodies against the tick-borne bacterium. Because false positives are not unusual, a second step, known as the Western blot test, refines the search to antibodies specific to several proteins of B. burgdorferi.

 

Timing is crucial. The first, ELISA test also can produce false negatives. If it is performed too early, a person’s body hasn’t had enough time to produce antibodies to the bacteria. If it is performed too late, and the antibodies have waned.

Sometimes there’s nothing to signal a need for a test until it’s too late. The bulls-eye rash which often drives patients to the doctor may go undetected in the scalp or on the back. And some patients with the disease don’t get a rash at all.

A circular rash, called erythema migrans, or bulls-eye rash, often is the first sign of a Lyme infection (Photo U.S. Centers for Disease Control and Prevention)

Ramos, who started experiencing crushing fatigue when she was 14, assumed it was normal – “teenagers are exhausted all the time,” she said. 

She can’t remember being bit and her parents never saw a rash on their daughter’s skin.

“People assume you've got to be camping, that you've got to be out in the backwoods someplace,” to be infected, Ramos’ mother, Jamie Ramos, said.

This uncertainty means Lyme disease can go untreated for months or years, leaving the infection to attack muscles, the heart and the nervous system, rendering difficult even simple tasks.

(From left to right) Denny Ramos, Caleb Smith, Breanna Ramos, and Jamie Ramos pose in Breanna Ramos and Smith’s living room. Ramos’ parents bought their ‘Lyme awareness’ T-shirts to show their love and support for their daughter and wore them to the hearing in early June. (Bridge photo by Dale Young).

Ramos’ fiancé said they keep their thermostat at 63 degrees because heat worsens Ramos’ symptoms. With limited energy, she has to carefully choose her activities ‒ 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.

When the couple remodeled their floor, sanding and laying every plank “nearly killed me,” Ramos said.

That pain is part of the “hidden burden that isn't necessarily reflected in health care costs...that comes from a chronic disease like this,” said Caleb Smith, her fiancé. “It’s often not mentioned, but it’s very important.”

Michigan is far from alone in its struggle to get a handle on the illness. 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 incorrectly treating her for epilepsy and multiple sclerosis before she was diagnosed in 1992 with Lyme disease – three years after a tick bite while on a vacation in northern Michigan. Other treatments, including oral antibiotics, fell short of helping her; only repeated infusions of antibiotics helped, she said.

But she, too, said she worries long-term antibiotics are not 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 be overtreated, too. That’s what makes this so difficult.”

It’s 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 that treats the symptoms? And none of the bills address the problem of unreliable testing of Lyme disease ‒- the first step in treatment.

“It was not an easy decision” to oppose the package, Lobes said.

A red state, but it’s not politics.

This much is clear: Reports of Lyme disease are on the increase.

The state logged 262 suspected or confirmed cases of Lyme last year, compared to 103 suspected or confirmed cases in 2009, according to the Michigan Department of Health and Human Services.

In Charlevoix recently, Dr. Joshua Meyerson turned his computer to the Lyme disease risk map created by the state health department.

Dr. Josh Meyerson said the spread of Lyme disease ‒ evidenced by anecdotes and personal experience ‒ is confirmed with data, including the state’s Lyme Disease Risk Map. Bright red counties are considered at risk. (Bridge photo by Robin Erb)

Less than 20 years ago, just a few counties in the Upper Peninsula and the southwest corner of the state were at risk for Lyme disease. Now, a swath of bright red “at risk” counties – 37 in all – stretches through much of the Upper Peninsula, southward along the western side of the state, then eastward in the middle between Van Buren and Wayne counties.

There are different theories for the spread, including birds bringing ticks into the state from neighboring Wisconsin, said Meyerson, medical director of the Health Department of Northwest Michigan.  

It’s an increase he has noticed in his own experience. 

In June, he was biking with friends in Washtenaw County through long grass. Showering afterward, he inspected carefully for ticks, rubbing down his arms and legs. Yet relaxing a few hours later, he reached down to scratch an itch on his leg, and there it was: a tick that had attached.

“People will tell you ‘It's like my dog never had ticks, and now I go walk into the woods and he's covered with them,’” Meyerson said.

Still, anecdotes and theories aren’t data, Meyerson said.

Cases must be properly tested, confirmed and reported, and public health officials and doctors must rely on the test available now.

“I have neighbors who would tell you they had Lyme disease, and they're not in” the state database, Meyerson said. “I don’t count them because they don’t meet the criteria.”

A health dilemma

Without an accurate count on cases, even health officials conservative in their reporting are concerned the disease remains relatively unnoticed in a state where sweeping greenspaces and waterfronts beckon bikers, hikers and other outdoor enthusiasts.

As a family practitioner in north central Michigan, Dr. Jennifer Morse used to see patients with conditions they blamed on a tick bite from years earlier, despite lab tests that ruled out Lyme.

Now as medical director for three public health departments, she, like Meyerson in Charlevoix, gets occasional reports of Lyme. Still, the lab results fall short of federal confirmation standards.

Undoubtedly, she said, symptoms for some patients are long-time complications from a Lyme infection.

“When you feel terrible, you want someone who can find a label and say there’s a treatment,” she said. “I really do feel for these individuals who are fighting this and feel they are not being listened to.”

But she too noted public health relies on accurate data. So, too, does good patient care. 

Misdiagnosing someone is harmful. The wrong treatments are dangerous, too. 

The Michigan State Medical Society said it worries the Lyme testing bills are too “prescriptive” on patient care, and that standardizing diagnostics and treatment for Lyme wouldn’t allow for the individualized care patients need.

“Our position has always been – again, regardless of the issue or condition or disease – that medicine be able to operate based on the best available evidence, and not be constricted by statutes that are outdated,” said Christin Nohner, director of state and federal government relations at the medical society.  

“Science evolves and medicine evolves. You have to have some flexibility on a case-by-case basis, when it’s appropriate.”

The medical society contends some of the most important work now is in education and prevention. That means watching for ticks, removing them properly and making sure patients get tested in a timely way so the tests yield accurate results.

Representative Gary Eisen, R-St. Clair, who testified in support of the bills earlier this month, said he was treated for Lyme disease 18 years ago by a Canadian doctor temporarily working in Michigan – but only after he visited five hospitals and eight doctors.

Eisen said he paid about $1,200 to send blood work to three different states for a test his doctor ordered, which confirmed a Lyme infection.

“The thing about this disease is if it is caught in the first few months, it is curable...so any information you get out to educate people is a positive thing,” he said.

Lobes, at the Michigan Lyme Disease Association, agreed.

The first step in fighting Lyme disease is prevention. The Michigan Lyme Disease Association distributed more than 50,000 of these pamphlets, along with tick identification cards, to public health clinics and other medical offices last year. (Bridge photo by Robin Erb)

Last year, the MLDA printed more than 50,000 pamphlets along with tick identification cards sent to health departments around the state.

“If we could change one thing, just one thing, it would be to educate physicians around Michigan that Lyme disease is here,” she said.

Ramos, who is still in the beginning stages of treatment, says the House legislation is only a starting point.

“After being sick for so long, and in pain for so long, you get used to it...you just live with it," Ramos said. 

“The trick for me was just to run on fear. That’s just what drives you – you’re just scared.”

Michigan Health Watch is made possible by generous financial support from the Michigan Health Endowment Fund, the Michigan Association of Health Plans, and the Michigan Health and Hospital Association. The monthly mental health special report is made possible by generous financial support of the Ethel & James Flinn Foundation. Please visit the Michigan Health Watch 'About' page for more information.

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Comments

Eric Potter MD
Fri, 07/26/2019 - 10:11pm

Feel free to read this link but be aware that it is misleading and will prevent many from finding answers to their chronic illness and finding restoration of health. Sincerely, Dr. Eric Potter

John
Mon, 07/01/2019 - 12:24pm

I too lived with chronic Lyme for a number of years .I had severe memory loss. I couldn't negotiate stairs without holding on to the stair well. I was always exhausted .I told my wife never grow old as I thought my symptoms were due to my age. (59). Despite taking precautions and having been through Lyme treatment before my test of the 5 bands came back positive for all 5.
30 days of intravenous antibiotics proved helpful but not a slam dunk. I have many bad days - brain fog , fatigue etc. Lyme is just as much a national health crisis as Aids in the 80's was/is but the response has been much slower.
I now wear all white clothing and even shave all my body hair so I can spot them quicker but sadly for me the damage is already done.

LLA
Mon, 07/01/2019 - 1:36pm

Lyme disease has been linked to less than 100 deaths since the bacteria was first identified in 1975. The chances of a person dying due to Lyme disease are negligible. Lyme disease also is not communicable from person-to-person, so I'd say the comparison to the HIV/AIDS epidemic of the 1980s-90s is a bit of a stretch.

LLA
Mon, 07/01/2019 - 3:15pm

To clarify, the bacteria itself wasn't first identified in 1975, but rather the syndrome that is now Lyme disease as a whole.

Dancer
Tue, 07/02/2019 - 10:52am

You clearly do not know anything about this subject. And yes, the newest research is showing Lyme can be sexually transmitted and transmitted through breast milk. Because of the inability to diagnose early (or at all), many people are misdiagnosed or never diagnosed and die of mystery neurological symptoms. Then there are so many others who have taken their lives because they couldn't live tat way any more. Then there are hundreds of thousands of people walking around with one or more types of Lyme bacteria who aren't terribly sick yet (not up to CDC criteria). You should walk in our shoes and do some research before you shoot your mouth off about baloney statistics that do not begin to tell the whole picture.

DJB
Fri, 09/20/2019 - 9:09am

I understand that you are making a comparison to HIV but you make Lyme disease sound like a common cold. True, the mortality rate for Lyme is low. However, the longterm, and sometimes permanent effects of Lyme disease can be devastating. I live in Connecticut and we have been dealing with this problem for nearly fifty years. I have seen many adult lives and children's lives ruined by the disease. Adults with Bell's Palsy and severe memory loss, perfectly healthy kids now in wheelchairs for years, straight-A students unable to pass a class and unable to pursue their dreams. Michigan residents need to take this seriously. You shouldn't trivialize tick-borne disease. In our area, regular tick control is just part of living a healthy life. It sounds like Michigan residents should also adopt this regimen. http://www.tickcontrolllc.com

LLA
Mon, 07/01/2019 - 1:41pm

Please note: If you find a tick on yourself or on your pet and want to have that tick tested or identified, you may send the actual tick itself to the state (MI Dept. of Health & Human Services) where they will identify the tick species and test for Lyme.
If you just want to know the species of the tick, you can simply submit a picture to the MI Dept. of Health & Human Services.
Visit their website for additional info.; www.michigan.gov/emergingdiseases/

Frank Johnson
Mon, 07/01/2019 - 3:44pm

All of the current 'diseases' caused by ticks originated in and around Connecticut. This is where the biological warfare research and development took place in the late sixties and then through the 70's. None of this stuff existed before ticks were purposefully injected with all manner of bacteria and viruses in the attempt to procure a viable insect born tactical weapon for the Army. This is why it is seemingly so strange that all of a sudden everywhere on the east coast had people getting all these NEW diseases from ticks. It was an accidental release of these biologically weaponized ticks that 'began' the process of what we now see today : infestation of disease born ticks....which will eventually make their way across the entire USA, as well as up into Canada. This information is not hard to come by. Maybe not very popular with the media machine, but none the less the information is out there and easy to come by. Tick born diseases like we see to day simply did--not--exist until they were PRODUCED in the lab. One guy in particular is responsible for all of this. I forget his name but he is actually well known in the insect community. I think it was Nixon who actually put a stop to this type program and experimental R&D, but is was, if I recall correctly, re-invigorated during the 70's and early 80's. Look into it for yourself.

Matt
Tue, 07/02/2019 - 7:32am

Please cite your sources else you will be thought a kook..... if its that easy.

Bones
Tue, 07/02/2019 - 8:55am

Not that I wouldn't put it past the US army, but do you have literally any sources to validate your conspiracy theory?

Mike Heath
Wed, 07/17/2019 - 6:23pm

Mr. Johnson, please provide citations to your currently bald and very provocative assertions.

Thor of the North
Sat, 07/06/2019 - 12:37pm

I went through the blood tests and more blood tests to the Mayo clinic after around 8 months I found I did not have Lymes' it was the High Stress job I had in the early 80s
Lymes' acts like other illnesses and it is hard to diagnose.
I know 7 people that have this disease it will beat the motivation out of you. Funny thing is....they are all in Wisconsin by the border of Iowa and these folks were diagnosed in the mid 80s.
Science and Medicine are not exact sciences so these infected crybabies testify thinking the MI Government can just pass a law that makes either the ticks leave or the Doctors give an accurate 100% diagnoses first time everytime. They are on the wrong planet

Eugene McSweegan
Tue, 07/16/2019 - 2:20pm

Disturbing that any person could listen to a group of people describing their difficult health issues and call them "crybabies". Seems like the actions of someone who is severely delusional & a sociopath. Or a petulant child. Unfortunately this kind of attitude serves the industry very well and as long as that is the case, the doctors will continue to blindly do what they are told. Sometimes a person can fail so monumentally that they have to create another reality. Deliberate release indeed.

Eric Potter MD
Fri, 07/26/2019 - 10:09pm

I am thankful for others raising awareness of the sometimes devastating effects of Lyme disease. While many recover without therapy and others recover with a short course of antibiotics, there are multitudes who suffer years without a diagnosis. Even if a provider is willing to test, many are still denied answers by a standard test which misses a large percentage of true cases (some say up to 50%). The current test also ignores the prevalence of other tick borne borrelia species like afzelii or garinii. Even passing this hurdle, those that get a diagnosis often receive inadequate therapies either in duration or the fact that Lyme usually requires a multi-antibiotic regimen. At our Sanctuary clinic, we care for many patients who have been failed by the conventional approach but are able to recover and return to life with our functional medicine approach. Too many were told, "it can't be Lyme here in _______". For those who doubt the reality of Lyme disease and its impact, try talking to someone who is either still ill from it or has recovered. Sincerely, Eric Potter MD