Idsa Publishes New Lyme Disease Treatment Guidelines
The following is a press release from the Infectious Disease Society of America. Analysis from LymeDisease.org will be forthcoming.
New evidence-based clinical practice guidelines for the prevention, diagnosis, and treatment of Lyme diseasehave been developed by a multidisciplinary panel led by the Infectious Diseases Society of America, the American Academy of Neurology, and the American College of Rheumatology. Representatives from an additional 12 medical specialties and patients also served on the panel.
The guidelines provide practical recommendations for clinicians treating patients with Lyme disease, including, but not limited to, primary care physicians, infectious diseases specialists, emergency physicians, internists, pediatricians, family physicians, neurologists, rheumatologists, cardiologists, and dermatologists.
These recommendations aim to serve as a meaningful resource for the safe, effective, evidence-based care of people with Lyme disease. They address clinical questions related to the prevention, diagnosis, and treatment of Lyme disease complications from neurologic, cardiac, and rheumatic symptoms disease expression commonly seen in Eurasia and complications from coinfection with other tick-borne pathogens.
The guidelines include 43 recommendations related to diagnostic testing, including testing scenarios detailed recommendations about Lyme carditis and a discussion of chronic Lyme disease.
Has Niaid Looked At The Potential Benefits Of Long
Yes. NIAID has funded three placebo-controlled clinical trials on the efficacy of prolonged antibiotic therapy for treating PTLDS. The published results were subjected to rigorous statistical, editorial, and scientific peer review.
These trials were designed to ensure that several key parameters were addressed:
- The susceptibility of B.burgdorferi to the antibiotics used
- The ability of the antibiotics to both cross the blood-brain barrier and access the central nervous system and to persist at effective levels throughout the course of therapy
- The ability of the antibiotics to kill bacteria living both outside and inside mammalian cells
- The safety and welfare of patients enrolled in the trials
The first clinical trial, which included two multicenter studies, provided no evidence that extended antibiotic treatment is beneficial. In those studies, physicians examined long-term antibiotic therapy in patients with a well-documented history of previous Lyme disease but who reported persistent pain, fatigue, impaired cognitive function, or unexplained numbness. Those symptoms are common among people reporting PTLDS. Patients were treated with 30 days of an intravenous antibiotic followed by 60 days of an oral antibiotic.
In 2016, a clinical trial conducted in the Netherlands also concluded that in patients with persistent symptoms attributed to Lyme disease, longer term treatment with antibiotics did not provide additional benefits compared with shorter term regimens.
Lyme Controversial From The Start
In autumn 1975, Polly Murray, an artist and mother of four in Lyme, reported to the state health department that she and her children were suffering from mysterious maladies, including stiff and swollen knees and rashes. And neighboring children were having similar hard-to-explain symptoms.
Physicians diagnosed the children with juvenile rheumatoid arthritis. Another mother from the area, Judith Mensch, also contacted the state health department. Finally, the cluster aroused the attention of the Connecticut public health authorities. Yale Universitys Dr. Allen Steere, who was still a rheumatologist-in-training, began searching for a cause.
The following year, Steere told the Journal of the American Medical Association, that he strongly suspected the illness came from some type of infection.
In the early 1980s, Willy Burgdorfer, a medical entomologist at Rocky Mountain Laboratories, identified the bacterium that caused the mysterious affliction. It was named Borrelia burgdorferi after him.
Robert A. Aronowitz, a medical historian at the University of Pennsylvania, said the divide between mainstream medicine and Lyme patient advocates started early with Patty Murray herself. He noted that Murray created local Lyme support groups starting in the 1980s that began to position themselves in opposition to the leading Lyme disease physicians and scientists and their view of the disease.
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Alternate Treatments Offer Relief
Freitas now takes Epsom salt baths on 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.
For babesia … I’m taking liquid gold … Mepron,” said Freitas. “It’s really expensive. It’s 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. I’m having peace of mind,” Freitas said. “I feel like I’m 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. “I’m getting out of the graveyard,” she said.
Said Oppenheimer to his wife: “What I’m seeing is you’re better relative to the beginning of , because you’re still not good.”
For Freitas, the struggle for recognition and relief from her symptoms continues. She and her husband remodeled their home over the summer, refurbishing their two-story house with a plan to rent out one level to pay for Freitas’ ongoing treatments.
And she still holds out “a little flame of hope” of one day becoming a doctor just like her dad.
Key Points About Lyme Disease In Children
- Lyme disease is an infection caused by bacteria. The bacteria are usually spread by tick bites.
- Lyme disease is a year-round problem, but it peaks during the spring and summer months.
- Ticks live in wooded areas, low-growing grasslands, and yards. A child is more at risk outdoors in these places, or around a pet who has been in these areas.
- One of the most common symptoms is a ring-shaped rash that looks like a bulls-eye. It may be pink in the center and have a darker red ring around it. The rash does not occur in every case of Lyme.
- Lyme is usually not hard for a healthcare provider to diagnose. Diagnosis is usually based on symptoms and a history of a tick bite. Your child may have blood tests to help diagnose Lyme.
- Lyme disease is usually treated with antibiotic medicine. Early stage Lyme disease is more easily cured with antibiotics than late-stage disease. Repeated courses of antibiotics for post-Lyme disease syndrome dont help.
- There is no vaccine for Lyme disease. But you can help prevent Lyme disease by protecting your child from tick bites.
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Chronic Lyme Disease Vs Acute And Late Stage Lyme
One reason chronic Lyme disease is harder to detect and treat than Lyme at earlier stages is that chronic Lyme disease symptoms are more wide-ranging and varied. Chronic Lyme disease can cause symptoms of early Lyme disease such as fatigue and muscle aches to recur, but it can also cause new symptoms that affect different parts of the body.
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 how the immune system is affected by the Lyme bacterium, research that could contribute to treatments for people with prolonged reactions after the infection. 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.
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The Prescription Antibiotic Study
The latest study is Antibiotic Treatment Response in Chronic Lyme Disease: Why Do Some Patients Improve While Others Do Not? published October 3, 2020. In the study people that got well or responded very well with treatment were studied to see what worked. You can see more details about this study at lymedisease.org here.
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Doctors Debate Patients Suffer: The Fight Over Chronic Lyme Disease In Wisconsin
Mainstream medicine says the tick-borne infection is a short-term ailment, but some patients insist they have Lyme-caused symptoms that last for years.
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.
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Mans Ravaging Lyme Disease Eludes Doctors For A Year
Music professor says CDC test failed to pick up his disabling Lyme disease.
âAllen Bargfrede said he was jumping into the shower when he spotted a tiny tick on his ankle that would change his life.
I washed it off and didnt think about it anymore, said the 39-year-old associate professor of music business at Berklee College of Music in Boston, who was in Spain at the time for a conference. I remember thinking to myself, I hope I dont get sick from that.
Two days later, Bargfrede said he developed the classic bulls eye rash of Lyme disease, a bacterial infection transmitted through tick bites. The rash eventually gave way to a fever, cough and strange headaches, he said.
I had severe anxiety, said Bargfrede, who was getting ready to head home to the U.S. when the symptoms began to worsen. I was crazy scared to get on an airplane.
Bargfrede said it took nearly a year to confirm that he had Lyme disease after a string of negative tests, dangerous treatments and disbelief from most of his American doctors.
The best treatment for Lyme disease is the prompt use of antibiotics, according to the Centers for Disease Control and Prevention. But the CDC acknowledges that its recommended test can miss Lyme disease in its early stages, and it only catches an American species of the bacterium not the one Bargfrede contracted in Spain.
Dos And Donts Of Getting Help
If you think you may have this syndrome, experts suggest these tips:
Donât assume. Tell your doctor your symptoms, and let her check you.
Donât rush to a specialist. For an accurate diagnosis, start with a primary care doctor, says Eugene Shapiro, MD. He’s a professor of pediatrics, epidemiology, and investigative medicine at Yale School of Public Health.
Do take your antibiotic as prescribed. Even if you feel better, continue the course. Itâs 4 weeks of medications at most. Some experts believe stopping the drugs before your prescription ends may cause symptoms to linger.
Do find experts who can help your symptoms. Ask your doctor if it would be worth your while to visit naturopaths, traditional Chinese medicine doctors, psychologists, or other experts. Many medical centers have complementary and alternative medicine experts on site.
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Natural Treatment Plan For Chronic Lyme Disease Patients
When it comes to chronic tick-borne infections, the most common being Lyme disease, patients are searching for the treatment plan providing the most rapid recovery. Their treatment may be a blend of antibiotics with natural medications in a complementary fashion or natural medications alone. Chronic Lyme disease may also take a patient on a journey implementing immunotherapies, heavy metal chelation, stem cells, magnetic therapies, hyperthermia therapy , essential oils, energy medicine modalities and oxygen enhancement therapies.
As with any other chronic medical conditions, treatments will vary depending on the individual constitution, patient philosophy, access to care, cost, and ability to tolerate treatment. If there are complications along the way like symptoms flares due to treatment causing increased inflammation called Jarisch-Herxheimer response, its important to have a very diverse holistic approach to reduce the bumps on the road to recovery. These flares are usually the rule, rather than the exception with treating tick-borne infection. Its important to support the body, mind and spirit throughout the process because it can be a longer journey than anticipated.
10-Step Natural Treatment Plan for Chronic Lyme Disease
The examples given here are just a sampling of options available for treatment. They were chosen because they are the most commonly used and easiest to find in the marketplace.
The Salt/c Plus Protocol
This is a popular natural treatment protocol for Lyme disease and its persistent symptoms, that can be self-administered. It has been found to be particularly effective at permanently alleviating chronic and rapidly degenerative Lyme disease infection, where aggressive antibiotic treatment has failed.
At its most basic level, it involves taking increasingly large doses of pure sea salt and Vitamin C. It is recommended that the salt doses be specifically calculated and gradually increased at a pace set by your bodys response, this is referred to as the scale up method for dosing.
While no medical study or hard evidence exists, many people suffering from the long-term effects of Lyme disease have found success by following the protocol for anywhere from 6 months up to several years.
The Salt/C Plus Protocol is designed to eliminate bacteria and microbes throughout the human body, often at a slow and steady pace. Those who have used the protocol have reported that through continuous use, the symptoms of Lyme disease are eliminated little by little, often in a staircase type patter with up, downs and pauses in improvement along the way. Results are sometimes achieved early on but may also be achieved after long-term use.
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When Should I See My Healthcare Provider
If you feel sick after having spent time in areas where ticks might live, you should make an appointment with your healthcare provider.
If you received a Lyme disease diagnosis and you dont feel well after taking all of your antibiotics, contact your provider. This is especially true if you have symptoms like a stiff neck or mental confusion.
Get An Accurate Diagnosis
To get an accurate diagnosis, you must first find the right doctor specializing in Lyme disease. Do the research and look for a doctor who has extensive knowledge, licensure and certification, and a high success rate working with patients.
This doctor may not be in the United States. One of the most well-renowned infectious diseases clinics is Lyme Mexico.
You may be thinking you cant travel to Mexico for help, but you can. You can spend the same amount of time and money visiting multiple doctors near your home without results. Or, you can meet with a top expert in Lyme disease and receive the treatment that gives you back the life you deserve.
Lyme literate doctors have modern and more aggressive treatments to help heal your Lyme disease. Lyme specialists not only know about more aggressive treatments, but they also provide them in their clinics on an outpatient basis.
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What Are The Symptoms Of Lyme Disease In A Child
Symptoms can occur a bit differently in each child. They usually appear within 3 to 30 days after a tick bite. Lyme disease has early and late-stage symptoms. Early stage Lyme disease is more easily cured with antibiotics than late-stage disease. Most cases of late-stage disease occur when early stage disease is not treated.
One of the most common symptoms is a ring-shaped rash that looks like a bulls-eye. It may be pink in the center and have a darker red ring around it. The rash does not occur in every case of Lyme. If it does occur, the rash may:
- Appear several days after infection
- Last up to several weeks
- Be very small or very large, up to 12 inches across
- Look like other skin problems such as hives, eczema, sunburn, poison ivy, or flea bites
- Itch or feel hot, or not be felt at all
- Go away and come back several weeks later
Several days or weeks after a bite from an infected tick, your child may have multiple ring-shaped rashes on the body and flu-like symptoms such as:
Months to a few years after a bite, these symptoms may occur:
- Inflammation of the joints
- Nervous system symptoms such as numbness in the arms and legs, tingling and pain, and trouble with speech, memory, and concentration
The symptoms of Lyme disease can be like other health conditions. Make sure your child sees a healthcare provider for a diagnosis.
Who Is At Risk For Complications Of Lyme Disease
People who do not know they have been infected. So its important to check for deer ticks after outdoor activitiesespecially in the northeast or midwest parts of the country.
Ticks sometimes bite in such inconspicuous places as the hairline or back. Lyme disease is treated with antibiotics at any stage of illness to eradicate the bacterial infection. However, some people might still be at risk for lingering neurological complications if the bacteria has traveled to the tissue of the central nervous system.
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Internal Medicine & Primary Care Located In Frederick Md
Lyme disease is an unpleasant condition spread by the bite of the deer tick, and without expert assessment, it can be hard to diagnose. Usha Sivakumar, MD, MBBS, is a highly experienced physician at SivIMed Internal Medicine and Primary Care in Frederick, Maryland, who specializes in the diagnosis and treatment of Lyme disease. Call the clinic now if youre concerned you have the infection or book an appointment online.
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