Behind The Lyme Disease Debate: ‘no Silver Bullet’ For Confounding Ailment
Lane Poor talks with Forest Avenue School third-graders after a discussion about Lyme disease and ticks in Middletown in this May 2015 photo.
Editors note: This is the first installment in a three-part series exploring the debate over Lyme disease diagnosis and treatment, and how it has affected Rhode Island and those with the disease locally.
North Kingstown resident Joe Russo used to be a healthy, active man.
Along with providing for himself through full-time employment, Russo was an avid hunter, always searching for game during his downtime. He also rode bicycles up and down his neighborhood.
Then, more than a decade ago, things began to change. He continued his normal daily routine but had weird symptoms that would come and go, or just didnt feel right. He would seek medical treatment to find out what was wrong, but the doctors only said he was either anxious, depressed or had allergies.
So, you try all the things they tell you and you keep trucking, he said.
The symptoms would subside, he added, but months later he would experience these other flares and weird stuff, like vertigo, dizzy spells or sweats.
As the years passed, Russo did not get better. He sought testing for everything under the sun cancer and heart issues, among others to get an answer for why his condition was deteriorating. However, the doctors at the time failed to test for another possibility Lyme disease.
But the response he got was unexpected.
She left me with no reason, he said.
Nk Doctor Defends Lyme Disease Treatment Practices
NORTH KINGSTOWNFor many local residents, Dr. James Gloor has been a crucial resource in their fight against Lyme Disease. Now, the North Kingstown practitioner of 32 years is the subject of a Rhode Island Department of Health investigation, one which he claims is unfair and guided by special interest.
Since 2012, Gloor, who operates Wickford Junction Medical Walk-In on Ten Rod Road, has been investigated by the RIDOHs Board of Medical Licensure and Discipline, which originally claimed that he had been misdiagnosing and mistreating patients for Lyme disease after receiving complaints from six of his patients. Gloor claims that the board and its members are targeting him in a witch-hunt, and that the RIDOH and Rhode Island Hospital are ignoring patients who have appealed to them for treatment of chronic Lyme disease. For more of this story pick up a copy of today’s Standard-Times.
my patients at Rhode Island Hospital, she has been brow beaten there, saying to her, you dont have Lyme, said Gloor. It was verified by Leslie Fein in N.J., and she sends it back up and says, you guys missed it at Rhode Island Hospital.
Then they say she does not, it is a psych case, he continued. There is a big, black hole at Rhode Island Hospital and Lifespan, and we need to shine the light on desired incompetence, a chosen path of ignoring an epidemic. We are in the middle of an epidemic and we have our major hospital denying anything is going on.
Individual Treatment Plan For Lyme Disease
Our team creates an individual treatment plan for each patient. Depending on the patients unique needs and goals, that plan might include:
- Antibiotic therapy
- Cognitive behavioral therapy, to assist with the cognitive and emotional issues some patients experience
- Physical therapy, to build strength and resilience and alleviate muscle and joint pain
- Complementary therapies, including non-traditional approaches such as yoga, acupuncture and more
- Consultation and/or referral to neurologists, rheumatologists, and other specialists as needed
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The Right Provider Is In Our Network
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Lifespan, Rhode Island’s first health system, was founded in 1994 by Rhode Island Hospital and the Miriam Hospital. A comprehensive, integrated, academic health system with The Warren Alpert Medical School of Brown University, Lifespan’s present partners also include Rhode Island Hospital’s pediatric division, Hasbro Children’s Hospital Bradley Hospital Newport Hospital Gateway Healthcare Lifespan Physician Group and Coastal Medical.
Experienced Lyme Disease Doctors
We are one of the top Lyme Disease treatment clinics in the world. Weve specialized in late-stage Lyme disease treatment for over 23 years. Dr. Minkoff is an infectious disease doctor who oversees all Lyme treatment programs, using a safe and highly effective, science-based approach to help patients overcome Lyme Disease.
Lyme disease is the most common tick-borne illness in North America and Europe and is caused by the bacterium Borrelia burgdorferi. Lyme got its name from Yale researchers who named the strange cluster of symptoms, after the town it originated from, Lyme, Connecticut.
Deer ticks typically carry the bacteria, which they spread to humans while feeding on their blood, but other insects including mosquitoes are also now being implicated.
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What Kind Of Doctor Tests For Lyme Disease
In fact, any kind of doctor can test you for Lyme disease. However, that doesnt mean its a good idea to have your dermatologist or podiatrist order the diagnostic tests. Many people simply see their family physician or primary care doctor to get diagnosed and treated for Lyme.
There are also doctors who specialize in Lyme disease and other tick-borne illnesses, called Lyme-literate doctors, who you may want to consult instead more on that a little later in this article.
Finally, there are other types of specialists you may or may not need to consult with depending on the duration and severity of your symptoms.
For example, many patients wonder if they need to see an infectious disease specialist.
How To Approach Your Non
For various reasons, you may choose to consult with a doctor who doesnt specialize in Lyme disease or other tick-borne diseases.
If so, be sure to be as proactive as possible in providing information that could help in diagnosing your disease, and always feel free to share resources that you find in your own research to prompt discussions about any aspect of your diagnosis or treatment, including more advanced testing options.
If your doctor does not believe Lyme disease exists, reach out to another doctor for a second opinion.
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Current Tests Are Designed To Detect Antibodies Not Necessarily Active Illness The Study Spearheaded By The Lifespan Lyme And Tick
PROVIDENCE A Rhode Island hospital is enrolling residents who have active, acute Lyme disease into a new, international clinical research study to learn more about the condition.
The Lifespan Lyme and Tick-Borne Diseases Center at The Miriam Hospital is spearheading the study, which is sponsored by Pfizer Inc. The centers director, Dr. Jennie Johnson, who is also an infectious disease specialist, said she is specifically interested in finding better diagnostics and testing for Lyme disease.
Johnson explained that most Lyme disease tests are designed to detect antibodies. But these antibodies can take weeks to develop after an infection and can also stay in the blood for months or years after the infection is gone, even after treatment.
But the tests cant differentiate if we were formerly infected or if we have an active illness, said Johnson on Tuesday night. So these tests can also remain positive for years after the patient had active Lyme disease.
The US Centers for Disease Control and Prevention has previously said that it has supported the development of new tests because of the inaccuracies, and Pfizer has a study at Bostons Massachusetts General Hospital in addition to the one at The Miriam. There are three other sites in the US recruiting patients, as well as sites in Canada and Europe, said Johnson.
Johnson said Rhode Island is an ideal location for the study since Lyme disease is really localized to the northeastern portion of the US.
Other Surprising Lyme Disease Symptoms
So many people are walking around with inexplicable health conditions and baffling symptoms.
Conventional doctors are often perplexed by the striking range of symptoms, leading to severe misdiagnosis. Patients are often brushed off as hypochondriacs or having mental illnesses neither of which leads to a resolution.
The tsunami of symptoms is not some strange mystery illness. Its often simply Lyme Disease that can manifest as:
- Flu-like symptoms Fever, chills, fatigue, body aches, and a headache may accompany the rash.
- Joint pain If the infection is not treated, bouts of severe joint pain and swelling, weakness and arthritis may occur, particularly in the knees.
- Unexplained Symptoms Brain Fog, malaise, fatigue, dizziness, aches and pains, headaches, anxiety, mood swings, depression, abdominal pains, nausea, diarrhea, sleep disturbances, stiff neck
- Neurological problems In some cases, untreated infection resulting from Lyme disease may result in inflammation of the membranes surrounding the brain , temporary paralysis of one side of the face and weakness, numbness, tingling, shooting pains or burning in different parts of the body or limbs.
Many patients are startled to discover their poor health is the result of having Lyme Disease.
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New Tests And Treatments For Lyme Disease
Do you feel like something is going disastrously wrong with your body and nobody knows what the hell you are going through? You may be suffering from Lyme disease which is caused by Borrelia Burgdorferi and transmitted by ticks. One tick bite can be the reason of the disaster. But you may hardly notice it or even be unaware of tick bite because of its small size.
How long do you think it takes to recognize an new disease? 2 years? 10 years?
It took them 3 years to discover HIV disease first observed in 1980 and recognized in 1983. So on average no less then 5 years sounds reasonable. Take a wild guess, how may years did it take for modern medical science to discover Lyme?
It was first medically determined as an illness by Reverend Dr. John Walker in 1764. It was 1982, when they found the bug itself – Borrelia Burgdorferi. And only then they confirmed, that it comes from the tick saliva. It took them 218 years to figure out what was going on. And they had modern equipment and resources.
How did it happen, that the HIV virus 120 nanometers in size was discovered 72 times faster, that the Lyme disease spirochete, which is 12,000 times bigger then the HIV virus – 10 micrometers in size?
If you look at it under the microscope, you will see snakes. The causative agent of Lyme disease Borrelia Burgdorferi looks like a snake, as well as syphilis. Somehow it was very difficult to identify those microorganisms that look like snakes.
Bottom line is simple:
Are Llmds Infectious Disease Specialists
No. While it is possible for a LLMD to be an infectious disease specialist, LLMDs can come from any field or background. Many LLMDs are general practitioners or family doctors, while others may specialize in a specific type of medicine, such as naturopathic medicine.
For more information on finding a LLMD, read IGeneXs blog How to Find Doctors Who Can Help with Your Tick-Borne Disease.
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Lyme Disease Stage 2 Early Disseminated Infection
Untreated, the infection spreads through the bloodstream and lymph nodes within days to weeks, involving the joints, nervous system, and possibly the heart. Multiple rashes may erupt in other places. If the infection affects the nervous system in the second stage of Lyme disease, various acute neurological problems may appear. These include facial palsy, which is the loss of muscle tone on one or both sides of the face, as well as meningitis, which involves severe headaches, neck stiffness, and sensitivity to light. In addition, some case reports have described altered mental status, shooting pains that may interfere with sleep, as well as abnormal skin sensations.
Within days to weeks after the onset of local infection, the bacteria may begin to spread through the bloodstream and a rash may develop at sites across the body that bear no relation to the original tick bite.
Identify Doctors Trained In The Diagnosis And Treatment Of Tick
You can access a variety of online resources and directories to locate doctors who are specifically trained in identifying and treating tick-borne illnesses. These do not have to be infectious disease specialists they can be physicians from any practice area who simply have extensive experience with tick-borne diseases.
It is particularly important to find a Lyme expert if you suspect that you may have Lyme disease, since it is the most frequently misdiagnosed of all tick-borne diseases. Finding a Lyme-literate medical doctor a physician who is familiar with the vast range of symptoms that may indicate infection at various stages of the disease, as well as potential coinfections and other complexitiescan help ensure that you get the right treatment, right away.
To find a doctor who is also a Lyme expert, you may want to explore the following resources:
Note: Some of these organizations may require you to submit a form or create a login to access their databases.
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What Does A Lyme Disease Tick Bite Look Like
In 70 to 80% of Lyme disease cases, there is an appearance of erythema migrans, or a very pronounced tell-tale rash typically, your skin will look like a red bulls eye, or target-shaped rash. There will often be a pustule center to this bulls eye. Please see the photo in this article to familiarize yourself with its appearance. Please note that other bitessuch as spider bitescan appear like this, so if your rash has this appearance, please see your healthcare provider and get tested right away.
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Tips For Preventing Lyme Disease
Penelope Dennehy, MD, director, Pediatric Infectious Diseases, discusses Lyme Disease and offers tips for prevention.
Lifespan, Rhode Island’s first health system, was founded in 1994 by Rhode Island Hospital and the Miriam Hospital. A comprehensive, integrated, academic health system with The Warren Alpert Medical School of Brown University, Lifespan’s present partners also include Rhode Island Hospital’s pediatric division, Hasbro Children’s Hospital Bradley Hospital Newport Hospital Gateway Healthcare Lifespan Physician Group and Coastal Medical.
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What Is A Lyme
A LLMD is a physician whose experience with Lyme disease patients makes them familiar with the vast range of symptoms, co-infections, and complications associated with the disease at various stages. Because of this knowledge and expertise, many patients also find LLMDs more open-minded and understanding of their experiences, especially if theyre having a hard time getting an accurate diagnosis from another physician.
But how do you know if you need to see a LLMD? Below are some common reasons, any or all of which may apply to you.
Lyme Disease Diagnosis And Treatment Mandate
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Top Lyme Clinic The Us
Long considered one of the top Lyme Disease clinics in the nation, LifeWorks Wellness Center regularly sees patients from around the world who are desperately seeking a resolution to this debilitating condition.
If you have been to other doctors and you feel like you are not being properly diagnosed or youre still suffering from strange symptoms despite testing and treatment, you owe it to yourself and your family to come to our clinic and be evaluated by one of the top Lyme disease experts in the world.
Lyme Disease Treatment In Nassau County Ny
Lyme disease is an infection caused by a blacklegged tick. This tiny tick causes huge health issues if you are bitten and you do not treat this right away. This article will explore who is a risk for Lyme disease, how to identify a tick bite, the prevention of tick bites, the symptoms of Lyme disease, the medical treatment protocol for Lyme disease, and the recovery from Lyme disease.
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How Do I Prevent Tick Bites
Aside from wearing tick repellant, you can minimize the likelihood of ticks on your property by adhering to the following suggestions:
- Keep your lawn mowed and well-manicured
- Prune your trees, clear excess brush and leaf litter
- Keep your childrens play sets away from the woodland edge of your yard
- Landscape with gravel pathways, mulch, decking, stone, tile and other hardscapes around your home
- Wildflower meadows and herbal gardens also detract ticks and are a grass alternative
- Fence your yard to discourage deer from entering
- Plant deer-resistant plants such as marigolds, shrubs and trees, annuals and perennials
- Clean up stonewalls and hiding places that provide shelter for mice and chipmunks
- Keep your firewood piles far away from your home
- Apply pesticides or insecticides that kill ticks, preferably in mid-May through early June.
You can request more information about Lyme disease today by calling 244-4466 or .
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Legal Mandates To Cover Unproven Treatments
The state of Connecticut, meanwhile, enacted a law on June 18, 2009, to allow a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease. The states of Rhode Island, California, Massachusetts, New Hampshire, Vermont, New York, Maine, and Iowa have similar laws.
Massachusetts and Rhode Island have laws mandating insurance coverage for long-term antibiotic therapy for Lyme disease when deemed medically necessary by a physician. In 1999 Connecticut had passed a similar, though somewhat more restrictive law.
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