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Lyme Disease Patients Seek Help As Doctors Debate Treatment
The month of May with warmer weather and the start of the summer season brings renewed concerns over Lyme Disease and possible exposure to the ticks which carry the bacteria infection. And advocates for better access to medical care in regards to diagnosis and treatment are pressing for more awareness of the condition.
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BUFFALO, N.Y. – The month of May with warmer weather and the start of the summer season brings renewed concerns over Lyme Disease and possible exposure to the ticks which carry the bacteria infection.
Advocates for better access to medical care in regards to diagnosis and treatment are pressing for more awareness of the condition. That would especially apply to longer term cases where people say they have been suffering from its debilitating effects for years.
There is an ongoing debate in the medical community over proper diagnosis and care for such cases. Some doctors feel patients could be misguided and there could be harmful or dangerous complications if they follow procedures for long term use of antibiotics.
Some advocates say doctors must be allowed to consider and suggest treatment options.
Recently 2 on Your Side spoke with some patients and their loved ones who hope to see some change.
That’s a shared assessment among many of the people and loved ones attending a Lyme Disease support group meeting at an Orchard Park restaurant.
Over 300,000 cases are documented in the U.S. each year.
Call Ahead And Ask Questions
Even if you find a doctor who specializes in treating tick-borne diseases, you will want to ask some questions before making an appointment and committing your time and money. A few basic questions to consider asking upfront include the following:
- What is your experience in treating patients with tick-borne diseases?
- How do you diagnose diseases? Do you use any specific labs or lab tests to confirm diagnosis?
- Do you test for coinfections?
- Do you use traditional antibiotics and/or herbals?
- Do you have any patient success stories you can share?
- Do you strictly adhere to CDC test interpretation criteria or are you open to alternative criteria?
If youd like to find a LLMD and want to know more about how to vet them, read the Tick Talk blog, What Makes a Doctor Lyme Literate?
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Lyme Disease Specialist Will Speak In Olean
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A public information meeting on the treatment of Lyme disease will be held at 7 p.m. Friday in First Presbyterian Church, 212 Laurens St. The session will be led by Dr. Joseph T. Joseph of Pittsburgh, a specialist in the treatment of disease, which is spread by the bite of the tiny deer tick. The meeting is sponsored by Advanced Home Care of Western New York.
Stage : Early Disseminated Lyme Disease
Early disseminated Lyme disease occurs several weeks to months after the tick bite.
Youll have a general feeling of being unwell, and a rash may appear in areas other than the tick bite.
This stage of the disease is primarily characterized by evidence of systemic infection, which means infection has spread throughout the body, including to other organs.
Symptoms can include:
- disturbances in heart rhythm, which can be caused by Lyme carditis
- neurologic conditions, such as numbness, tingling, facial and cranial nerve palsies, and meningitis
The symptoms of stages 1 and 2 can overlap.
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Be Prepared For Your Doctor Visit
You can improve your chances of having an accurate diagnosis and effective treatment by providing your doctor with as much information as you can from the very start. The following checklist can be a good reminder of what to bring and discuss with your physician at your first visit:
- Have the tick tested and/or identified:If you were able to remove or find the tick that bit you, seal it in a glass or plastic container and consider sending it to IGeneX for testing. Additionally, photograph the tick and/or have the species identified ahead of time if possible. Knowing what kind of tick bit you and, in particular, whether it has tested positive for a tick-borne disease can be extremely helpful for your doctors diagnostic process. If the tick is still being tested when you see your doctor, you still may be able to start treatment based on the severity of your symptoms.
- Note possible exposure: Write down the places and dates that you believe you were exposed to ticksand the possible date and time of day when the engorged tick attached and fell off or was removed.
- Track your symptoms: Keep a running log of all symptoms youve noticed since the tick bite, even if youre no longer experiencing them. Be sure to include the days/times when symptoms appeared . For additional help, you can use IGeneXs Symptom Checker.
- Take pictures: Take pictures of any rashes or blisters that you may have noticed at the site of the tick bite or elsewhere on your body.
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Both have been told their neurological and other medical problems may be imaginary. Yet each is convinced she has the disease.
“After a while of going to these docs and them telling me that it’s all in my head, you start to believe it,” Stachowiak said.
If caught early, Lyme disease is easily treated. But the women illustrate divisions in the medical community over diagnosing and treating Lyme in chronic, long-term cases.
On one side are the majority of physicians, supported by government health agencies, who adhere to a definition of the disease based on the criteria used to document new cases, such as flulike symptoms and a rash that resembles a bull’s-eye.
On the other side are some patients, Lyme disease organizations and a small number of doctors who use a broader set of criteria to diagnose Lyme disease. They advocate treating patients for probable Lyme disease with long-term antibiotic therapy.
These doctors, and their patients, argue that Lyme disease is more widespread than believed.
The government’s definition of Lyme, based largely on observable symptoms, is too focused on the early stage of the disease, according to some patient advocates.
” effectively disenfranchised a whole population of Lyme patients because most of the Lyme patients don’t meet it,” said Pat Smith, president of the New Jersey-based Lyme Disease Association.
Others disagree.
Early signs of Lyme disease
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Ticks And Lyme Disease Warning
Jun 8, 2020 | All Articles, Diseases, Health, Pet Health | 0 |
Niagara County Department of Health Performs Field Surveillance for Ticks And Warns Against Tick Exposure and Risk of Lyme Disease
Ticks and tick-borne diseases are a public health concern throughout Western New York. With warmer weather, ticks are actively feeding and reproducing. While several tick species can be found in Western New York, it is the black-legged tick that can transmit Lyme disease.
The deer tick has spread throughout the Northeastern United States, including all of Western New York, according to Niagara County Public Health Director, Daniel Stapleton. Lyme disease can be transmitted when an infected tick bites the skin and stays attached long enough to inject bacteria into the bloodstream. The longer an infected tick stays attached, the more likely that it will transmit Lyme disease germs.
Typical signs and symptoms of Lyme disease may include a circular bullseye skin rash, headache, fever, and fatigue. Lyme disease is easily treated and cured with antibiotics in the early stages, but if left untreated can result in serious complications involving the joints, immune system, nervous system, heart, and other organs.
To avoid ticks and tick-borne disease, be informed about what ticks look like, how to protect yourself from ticks, and what to do if you find a tick on you or someone else.
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Cure For Lyme Disease
Chronic or late-stage Lyme Disease tends to affect people who have big things to offer the world. These people may already seem to be “on their path” and often excel in multiple areas at once, including the healing arts. The illness seems to appear in people who could go even deeper with their healing and creative gifts but for one reason or another feel locked into their current lifestyle. Perhaps they have unexpressed creative gifts like photography, painting or writing. Maybe they’ve been waiting for life to “let up” before they indulge such longings. But the creative pursuits themselves offer healing – not just for the Lyme folks, but for the world in a bigger way.
On the soul level, Chronic Lyme shows up like a roto-rooter, forcing people to dig deep and remove ALL blocks to creativity and healing. To the outside world, these people usually look like they have no blocks because they’re moving so effectively through life, but Life has other plans. It’s as though these souls came in with a bigger mission than their current lifestyle or world view allows. They may get nudged a few times, but if they don’t respond fully, then along come some little spirochetes to terrorize the immune and neurological systems into action. Like a guerrilla army, the bacteria sneak inside without detection and then launch a massive attack that captures attention through shock and awe.
Spread Of Lyme Stirs Medical Rift Doctors Are Divided Over How To Diagnose And Treat The Disease In Chronic Long
As Lyme disease spreads to upstate New York, a medical controversy of sorts has followed it across the Hudson.
The illness, transmitted by the bite of a deer tick, is characterized early on by flulike symptoms.
But some patients are complaining of disabling late-stage medical problems even though they can’t recall a telltale tick bite or rash, and there is disagreement over whether they should be treated for what some claim is still a very rare disease.
Robin Stachowiak of Lancaster has suffered one health problem after another, and describes herself as 42 but feeling like 102.
Both women have received negative results from the most common laboratory tests for Lyme. Both have shuffled from specialist to specialist unable to find a doctor who can diagnose what is wrong with them.
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What Is Lyme Disease
Lyme disease is an infectious disease caused by the bacteria Borrelia burgdorferi. B. burgdorferi is transmitted to humans by a bite from an infected black-legged or deer tick. The tick becomes infected after feeding on infected deer, birds, or mice.
A tick has to be present on the skin for at least 36 hours to transmit the infection. Many people with Lyme disease have no memory of a tick bite.
Lyme disease was first recognized in the town of Old Lyme, Connecticut, in 1975. Its the most common tickborne illness in Europe and the United States.
People who live or spend time in wooded areas known for transmission of the disease are more likely to get this illness. People with domesticated animals that visit wooded areas also have a higher risk of getting Lyme disease.
Upstate Lyme Disease Doctor: Early Treatment Crucial But Diagnosis Can Be Tricky
The deer tick can spread Lyme disease in its nymph or adult stage.
Syracuse, N.Y. — Lyme disease is treatable when caught early, and most patients recover fully, said Dr. Kristopher Paolino, an infectious disease expert at Upstate Medical University.
“The thing with Lyme disease is, the earlier you catch it, the earlier you treat it, the better the outcomes,” Paolino said today. “There is concern that Lyme disease is a forever illness, and for the majority of people that’s not the case.”
Paolino spoke with discussion, answering questions about the spread of the disease, its symptoms and treatment, and the difficulty in diagnosing it.
Dr. Kristopher M. Paolino
If Lyme is caught in its early stages, a 10- to 21-day course of antibiotics are usually enough to kill the bacteria that causes Lyme. Left untreated, the bacteria can wreak havoc on the body, causing anything from painful joints to dangerous heart conditions. Even among those who are treated, 10 to 20 percent can suffer long-term problems, he said.
“There are people who have chronic symptoms, and those people are suffering,” Paolino said. “We need to do better to find ways to treat those patients.”
Lyme disease is caused by a bacteria spread by the bite of a black-legged, or deer, tick. About half of adult deer ticks in New York carry the bacteria.
Paolino said you should consult your doctor if you have any of these symptoms:
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Potential Barriers To Accepting A Lyme Disease Vaccine
Welcome to another Inside Lyme Podcast with your host Dr. Daniel Cameron. In this episode, Dr. Cameron discusses the potential barriers to the public’s acceptance and utilization of a Lyme disease vaccine. By Dr. Daniel Cameron The study, Understanding consumer and clinician perceptions of a potential Lyme disease vaccine, was published by Devchand and colleagues in the journal Health Education Research.ยน It has been two decades since the LYMErix vaccine
Do Your Research And Get Referrals
You can learn a lot just by researching doctors and reading patient reviews online. You can also connect with other patients through local and online support groups for various tick-borne diseases. Asking other patients to recommend or share their own experiences with different doctors can be particularly helpful when youre trying to locate and learn about physicians who specialize in various tick-borne illnesses.
The following sites can connect you to online support-group forums or help you identify different tick-borne support groups in the United States:
Read Also: How Do You Get Rid Of Lyme Disease
Test For Lyme Disease
Please take the time to read this 15 minute blog. It tells of how someone beat Lyme Disease and Q-fever, both contracted from the same tick bite, but Q-fever being 10 time worse than Lyme Disease. He tells of how doctors were not able to cure him and at his last hope found several natural foods that turned his health around within a week. On deaths door to a full recovery. Check out the simple ways he cured lyme disease with organic foods.
Chronic or late-stage Lyme Disease tends to affect people who have big things to offer the world. These people may already seem to be “on their path” and often excel in multiple areas at once, including the healing arts. The illness seems to appear in people who could go even deeper with their healing and creative gifts but for one reason or another feel locked into their current lifestyle. Perhaps they have unexpressed creative gifts like photography, painting or writing. Maybe they’ve been waiting for life to “let up” before they indulge such longings. But the creative pursuits themselves offer healing – not just for the Lyme folks, but for the world in a bigger way.
Treatment Starts With Accurate Diagnosis
The only way to get the proper treatment for your tick-borne disease is to get the right diagnosis in the first place and one of the best ways to do that is, if possible, to see a physician whos experienced with tick-borne diseases. Accurate diagnosis also requires high quality testing at a reputable lab. Learn more about why doctors and patients trust the tests offered by IGeneX.
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Symptoms Of Lyme Disease
People with Lyme disease may react to it differently, and the symptoms can vary in severity.
Although Lyme disease is commonly divided into three stages early localized, early disseminated, and late disseminated symptoms can overlap. Some people will also present in a later stage of disease without having symptoms of earlier disease.
These are some of the more common symptoms of Lyme disease:
- a flat, circular rash that looks like a red oval or bulls-eye anywhere on your body
- other flu-like symptoms
These symptoms may occur soon after the infection, or months or years later.
Your child may have Lyme disease and not have the bulls-eye rash. According to an early study, results showed roughly 89 percent of children had a rash.
Lyme disease is best treated in the early stages. Treatment for early localized disease is a simple 10- to 14-day course of oral antibiotics to eliminate the infection.
Medications used to treat Lyme disease include:
- doxycycline, amoxicillin, or cefuroxime, which are first-line treatments in adults and children
- cefuroxime and amoxicillin, which are used to treat women who are nursing or breastfeeding
Intravenous antibiotics are used for some forms of Lyme disease, including those with cardiac or central nervous system involvement.
After improvement and to finish the course of treatment, healthcare providers will typically switch to an oral regimen. The complete course of treatment usually takes 1428 days.
