The Infection That Launched A Thousand Protests
Lyme disease is a bacterial infection caused by Borrelia burgdorferi sensu lato and transmitted by Ixodes species ticks. The infection is non-fatal, non-communicable from person-to-person, is responsive to antibiotics, and is limited in range both geographically and seasonally. The most common clinical manifestation is a characteristic skin lesion that occurs at the site of the tick bite. Within weeks, some untreated patients might develop nervous system abnormalities or cardiac symptoms within months, arthritis can develop, most commonly affecting the knee. In addition to these objective clinical manifestations, some patients have several subjective complaints that are usually most prominent early in the infection. These symptoms include fatigue, arthralgia, myalgia, headache, stiff neck, and impaired concentration symptoms that are common in many infectious and non-infectious disorders.
Raphael Stricker Md Medical Director
San Francisco, California
Dr. Stricker received his medical degree and training in Internal Medicine at Columbia University in New York. He did subspecialty training in Hematology/Oncology at the University of California San Francisco, and supplemental training in Immunology and Immunotherapy at California Pacific Medical Center in San Francisco. He is currently the Medical Director of Union Square Medical Associates, a multispecialty medical practice in San Francisco.
Dr. Stricker is a member of the American Society of Hematology , the Federation of Clinical Immunology Societies , the American Federation for Medical Research , the American Society for Reproductive Immunology , the American Society of Microbiology , the American Academy of HIV Medicine . He was past president of the International Lyme and Associated Diseases Society . He serves on the Lyme Disease Advisory Committee that advises the California Dept. of Public Health. He has received the American Medical Association Award for Physician Excellence, and has authored over 200 medical journal articles and abstracts. Areas of special interest include immunologic infertility, immunodeficiency, coagulation disorders and tick-borne diseases.
Other Pathogens To Blame
Shor and his co-authors, including Maloney, propose that the lingering symptoms are caused by several pathogens from the Borrelia burgdorferi family or other tick-borne pathogens.
Nardelli said theres a variety of symptoms and severity in Lyme disease patients, and those symptoms can be caused by the inflammatory responses against the microbes.
“Inflammation is a huge part of the immune response. Its one of the frontline defenses we have, and it has this negative connotation, but it is intended for good,” he said. “Your immune response trying to kill the bug and in doing so, can cause damage, essentially.”
Some theories suggest that variants of the Lyme bacteria are resistant to antibiotics. Others argue that chronic Lyme is caused by a powerful immune reaction or it may even trigger an autoimmune disease. The central neural networks may be altered, having a significant impact on symptoms or a combination of these factors.
Nardelli is investigating Lyme-related arthritis that persists after treatment with antibiotics. He said science can be a slow process of acquiring new knowledge, and its tough for patients who are suffering with no clear answers.
That can lead them to seek out untrustworthy practitioners or fall for costly treatments that dont work. “You go out and find doctors that diagnose everything as Lyme disease,” Nardelli said.
“The whole goal is to get people the right diagnosis so they can get the therapy that they need,” she said.
Also Check: Can Urgent Care Treat Lyme Disease
The History Of Lyme Disease Has A Wisconsin Chapter Its Still Being Written
Her husband, John Oppenheimer, recalled his wife devouring medical journal articles. Freitas has a bachelors degree in biology from UW-Madison and a masters in marriage and family therapy from Edgewood College. In late 2018, a Florida-based medical school had admitted her to a pre-med program, but her declining health disrupted those plans.
Our Investigative Reporters Never Stop Digging
Sign up now for our free newsletters to get honest, independent reporting on Wisconsin issues that matter, plus our Friday news roundups.
Freitas floated the Lyme hypothesis to a rheumatologist, who felt the joint pain and hand swelling looked more like rheumatoid arthritis . Test results also suggested Freitas may have RA.
Also Check: Can Lyme Disease Flare Up Years Later
Doctors Debate Patients Suffer: The Fight Over Chronic Lyme Disease In Wisconsin
- Sunday, March 13, 2022, 6:50am
If life had gone as planned, Maria Alice Lima Freitas would be in medical school, inspired by the career of her father, a surgeon who practiced in Brazil. But instead of changing careers, the 49-year-old therapist retired from University of Wisconsin-Madison.
Freitas says her undiagnosed Lyme disease has sapped her energy, fogged her thinking and caused pain in her neck, shoulders, hands and right knee. She has three times deferred her entrance into medical school while struggling with myriad symptoms that she attributes to Lyme.
Most of her doctors say she is mistaken, and that her symptoms, which began in 2015, are due to rheumatoid arthritis, or RA.
Freitas is among thousands of Wisconsinites who say they are suffering from a chronic or long-term version of the disease. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.
Nationally, Lyme disease infects an estimated 476,000 people a year. The Wisconsin Department of Health Services reports the state had 3,076 estimated cases of Lyme disease in 2020 a doubling in the past 15 years. But medical entomologists say Lyme cases in the state could be 10 times higher than reported.
“The best way I can explainIm going through hell, keep on going,” Freitas said.
Alternate Treatments Offer Relief
Freitas now takes Epsom salt baths Mondays, Wednesdays, and Fridays and uses an infrared sauna for detoxification, saying it makes her body feel better.
And she now takes 30 pills each day, interspersing antibiotics with herbs and dietary supplements, which cost upwards of $1,200 a month.
Maria Alice Lima Freitas is pictured at her home in Middleton, Wis., on Oct. 6, 2021, with some of the treatments she takes for Lyme disease and other co-infections. She says she currently pays about $1,200 a month in medicines, vitamins, supplements and treatment costs. Coburn Dukehart/Wisconsin Watch
“For babesia Im taking liquid gold Mepron,” said Freitas. “It’s really expensive. Its 50 bucks for 80 milliliters, which lasts two weeks.”
She gave up dairy, gluten, and sugar to reduce inflammation.
And she meets with Shor monthly online from her house at a charge of $250 per visit, which insurance does not cover.
“It was to me the money is well paid. Im having peace of mind,” Freitas said. “I feel like Im getting better.”
Freitas said she started gaining back some weight in June. Her mind has become a bit clearer. Her long-term memory seems back a bit, too. “Im getting out of the graveyard,” she said.
Said Oppenheimer to his wife: “What Im seeing is youre better relative to the beginning of , because youre still not good.”
And she still holds out “a little flame of hope” of one day becoming a doctor just like her dad.
Recommended Reading: What Exactly Is Lyme Disease
Mitchell L Hoggard Pharm
A pharmacist by training, Mitch Hoggard pioneered the field of home infusion therapy and was the founder and president of an international home infusion company. As the president of a hyperbaric treatment center, Mr. Hoggard has published research on treatment of stroke, Crohns disease and Parkinsons disease. He turned his attention to tick-borne illnesses when his children became infected with Lyme disease. Mr. Hoggard is a frequent lecturer to physicians and patients on the subject of antibiotic therapy for Lyme. While leading companies in several other industries, Mr. Hoggard continues to devote much time to research, education, and treatment of Lyme disease.
Why Are Lyme Disease And Other Tick
A large number of cases of tick-borne illness are misdiagnosed, especially among children. A variety of bacterial organisms can cause Tick-borne diseases, so the progression of these diseases typically dont follow a specific pattern. Tick-borne illnesses are complicated to diagnose and treat because they can affect many different body systems, and their symptoms vary widely between infected individuals. The accurate diagnosis and effective treatment of Lyme disease and other tick-borne illnesses requires an experienced and knowledgeable practitioner with a thorough understanding of the complexity of these disorders.
Don’t Miss: Is Lyme Disease Test Covered By Insurance
Evidence Assessments And Guideline Recommendations In Lyme Disease: The Clinical Management Of Known Tick Bites Erythema Migrans Rashes And Persistent Disease
Daniel J. Cameron, MD MPH Lorraine B. Johnson, JD Elizabeth L. Maloney, MD
The 2014 ILADS Treatment Guidelines address three clinical questions the usefulness of antibiotic prophylaxis for known tick bites, the effectiveness of erythema migrans treatment, and the role of antibiotic re-treatment in patients with persistent manifestations of Lyme disease.
Why Is Lyme Disease So Difficult To Diagnose And Treat
There is no simple answer to this question. Scientists around the globe continue to uncover new strains of Lyme and other co-infections, complicating the ability to identify and or eradicate invasive organisms with 100% accuracy.
The Infectious Disease Society of America and the International Lyme and Associated Diseases Society have published recommendations for diagnosing and treating Lyme , as well as identifying the possible causes of relapsing or persistent symptoms. Presently there is not full consensus between the two organizations and the Centers for Disease Control and Prevention, adding to the confusion in addressing this public health crisis.
Lyme is referred to as the great imitator, often mimicking other illnesses. When discussing the likelihood of Lyme with your health care practitioner, understand that he/she may be wedded to one possible diagnosis and treatment, depending on his/her professional exposure.
Also Check: Lyme Disease Supplements And Herbs
Ilads Campaign Highlights Importance Of Doctor
Bethesda, MD, December 9, 2021 The International Lyme and Associated Diseases Society is running a powerful public awareness campaign to highlight the importance of doctor-patient relationships in the treatment of Lyme and other chronic diseases. The campaign debuted this week on a jumbotron in New York Citys Times Square.
The jumbotron video highlights the challenges doctors face from bureaucratic institutions when trying to treat patients. The video sends viewers to the ILADS.ORG website for more information. .
ILADS supports a doctors freedom to treat and a patients right to choose the best treatment options available, without bureaucratic interference. A doctors primary duty is to put the patient first. Outside interference restricts a physicians ability to provide optimum care.
We want to restore real healthcare for our patients and allow doctors to prescribe the best possible treatments without interference from insurance companies and other bureaucracies, said Dr. Steven J. Bock, president of the ILADS Board of Directors.
The jumbotron is anything but invisible. The giant video screen is 29 feet tall and 56 feet across and is strategically positioned at 1500 Broadway on the corner of 44th Street and 7th Avenue in New York City. The spot will run 5 times per hour for 36 days. It is estimated that 1.6 million people pass through Times Square each day. The spot will remain in place during the December holidays and New Years Eve celebration for bonus exposure.
Lyme Disease And Tick
Lyme disease patients have difficulty finding doctors with experience treating Lyme disease. For the past 25 years, LymeDisease.org has been connecting patients with Lyme-literate practitioners who specialize in caring for patients with Lyme disease.
We are happy to connect you with your nearest Lyme literate practitioners contact information. Please note, however, we are not privy to the status on each individual offices payment/insurance practices or if they are accepting new patients, with that said, we do encourage you to use the information available to contact the offices directly.
Also Check: Pics Of Tick Bites With Lyme Disease
Our Daughter Got Her Life Back
Our pre-teen daughter had always been active in sports and engaged at school. Suddenly she was complaining of aches and pains and was exhausted all the time. She became lethargic at school and no longer wanted to play soccer. Her pediatrician repeatedly dismissed her symptoms as growing pains and moodiness. Months later, our daughters symptoms had worsened to include headaches, swollen joints, shortness of breath, and more. For more than a year, we visited a variety of experts, all of whom told us it wasnt Lyme disease and prescribed a long list of medicines, ranging from anti-inflammatories to antidepressants, meant to ease her symptoms. Nothing helped. When another parent told me how much the chronic disease experts at Bock Integrative had helped his child, we knew I had to give Dr. Bock and Jennifer Petkos a try. The comprehensive approach they took in evaluating our daughters condition allowed them to diagnose her with two lesser-known tick-borne illnesses and they were able to design a treatment program that restored balance to her immune system. Shes now an active high school athlete and straight-A student. Thank you for giving our daughter her life back!~ Victoria, Hesler, Somerset, New Jersey
What To Expect From A General Practitioner In Australia
GPs are not allowed to test for Lyme. And most doctors in Australia will not refer patients for testing for Lyme unless the patient has travelled to a Lyme endemic country. This is because the Federal Government will not concede that Lyme disease can be contracted within Australia.
The reality for Australian patients presenting with Lyme symptoms, is to be told by their GP we do not have Lyme in this country. Unfortunately, Australian doctors are trained to believe that the Lyme bacteria Borrelia has not been found here.
See also Australian Lyme.
If a patient raises the possibility of Lyme disease, there is a high likelihood of condescension, disbelief and suggestions thatits all in your head from medical staff. However, if the doctor suspects a recognised tick-borne illness, or the patient has travelled, the patient may be referred to an infectious disease specialist.
Most doctors are not Lyme-literate. They have little training in, or knowledge of Lyme disease and are required to follow the Governments official tick-borne illness guideline, Debilitating Symptom Complex Attributable to Ticks Clinical Pathway. Tragically, this guideline leaves patients who contracted Lyme within Australia with symptom management as their only treatment option within the mainstream medical system.
You May Like: Does Lyme Disease Ever Go Away
Restoring Normalcy To Your Life
When you depend on the tick-borne illness experts at Bock Integrative, you can be sure you have highly trained, experienced and compassionate medical providers dedicated to determining the root cause of your illness. Our providers will develop a comprehensive tick-borne illness treatment regimen personalized for your needs. At Bock Integrative, were committed to continuously evolving on the frontier of tick-borne illness.
Carolyn Cooper Degnan Chief Operating Officer Secretary
San Francisco, California
Carolyn Cooper Degnan has been an active volunteer in the Lyme community since 2005. She has a strong leadership and operations background in both non-profit and for-profit businesses. Her former leadership roles include: Pres/CEO of the San Ramon Chamber of Commerce, President of the San Ramon Valley Education Foundation, owner of Degnan Insurance Agency and as a member several other non-profit Boards. She also has extensive non-profit event management and fundraising experience in addition to a strong operations background. Most recently she was the Practice/Business manager for a prominent West Coast LLMD before coming to LDo in 2018 as the new COO.
You May Like: How To Get Energy With Lyme Disease
Diagnoses: Viral Infection Arthritis
Freitas Lyme journey began in March 2019 as she battled monthly bouts of fever. She had trouble falling back to sleep late at night. Her hair rapidly fell out. And her body ached and her neck was stiff. She suffered from severe pain in her joints, bones and chest. She also felt tired. At first, Freitas attributed the exhaustion to the bladder surgery she had undergone in April. Fevers hit her in June and again in July.
The unbearable pain made it hard for her to work. It felt like someone was scraping the inside of her right knee with a knife. By August of that year, Freitas took a medical leave, unable to work.
She checked into a Madison hospital for a couple of days. She said the doctor ordered a variety of tests but not for Lyme. Freitas was diagnosed with a viral infection, which she said failed to explain her full slate of symptoms, including electric sensations on her face and arms and forgetfulness.
Four summers earlier, Freitas said she similarly felt eye pain, knuckle pain, fatigue, forgetfulness and headaches. She recalled a rash that had stayed on her leg for at least three weeks. Freitas saw a rheumatologist at St. Mary’s in early July 2015.
The doctor noticed a red spot on her leg, but it was not the classic Lyme sign of “bulls-eye” rash. She recalls being tested for Lyme, but the two-step testing came back negative.
Lyme Disease Specialist Portsmouth Nh
It can spread across your whole body. It can hide from and hijack your immune system, just like AIDS does. It can remain dormant, stealthily undermining your health for years.
Lyme Disease has been dubbed The Great Imitator for good reason. This insidious disease can disguise itself by mimicking many disorders. Chronic Lyme Disease symptoms can make you feel like you have the flu causing headaches, muscle aches, joint pains, brain fog, memory loss, nausea, stomach ulcers, constipation or diarrhea, sore throats, rashes, fatigue, neck stiffness, chills, night sweats, shortness of breath, and vague neurologic symptoms among others.
This makes diagnosing and treating it difficult for conventional practitioners. And because it affects each person differently its often misdiagnosed and at the root cause of: Fibromyalgia, Lupus, Multiple Sclerosis, Chronic Fatigue Syndrome, Rheumatoid Arthritis, Depression, Dementia/Alzheimers, or even menopausal fevers, sweats, and chills.
According to the Centers for Disease Control , nearly 300,000 new cases of Lyme Disease are diagnosed every year so imagine how many go undiagnosed.
Many patients come to us after struggling for years with symptoms that conventional doctors overlooked or misdiagnosed. They often forget when their tick bite occurred, or dont recall any tick bite at all, and we test for Lyme Disease years later.
Also Check: Lyme Disease And Nerve Damage