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 Polly 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.
Risk Factors For Persistent Symptoms After Treatment For Lyme Disease
Patients with the most severe symptoms on clinical presentation are the most likely to have persistent symptoms during convalescence.98100 Severe headache, arthritis, arthralgias, and fatigue at presentation predicted persistent symptoms in a retrospectively examined cohort of 215 patients.101 In a prospective treatment trial for early Lyme disease, persistent symptoms at several late follow-up visits were more common in patients who had more symptoms, higher symptom scores and multiple erythema migrans lesions.85 Patients with a longer duration of symptoms may also be at greater risk of persistent symptoms: a review of 38 subjects who had been previously treated for Lyme disease found that persistent somatic and neuropsychological sequelae were strongly associated with prolonged illness before treatment.77
Extended Antibiotics For The Treatment Of Post
Three research groups have examined prospectively the effectiveness of prolonged antibiotic courses for post-Lyme disease syndromes.5759,75 All trials had strict entrance criteria similar to the aforementioned definition of PLDS. The Klempner and colleagues58 study reported 2 parallel trials in which their cohort of 129 subjects was divided into seropositive and seronegative arms. Subjects randomized to treatment groups received 30 days of intravenous ceftriaxone followed by 60 days of oral doxycycline. Those randomized to the placebo arm received IV placebo for 30 days, followed by an oral placebo for 60 days. The primary outcome was health-related quality of life as assessed by standardized instruments . These instruments were administered at baseline, and then 30, 90, and 180 days. There was no difference in any outcome measure between placebo and treatment groups in either the seropositive or seronegative arm, or in a detailed battery of neuropsychological tests that was published subsequently.75 Although all patients had complained of cognitive dysfunction at baseline , objective measures of cognitive function, such as memory and attention, were normal compared with age-referenced normative data. Depression, anxiety, and somatic complaints improved in both the antibiotic and placebo arms groups between baseline and day 180.
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F Ake Diagnosis Not Fake Disease
One thing everyone can agree upon is that these patients are truly unwell. The fact that they have chronic disabling symptoms is not up for debate, regardless of whether their diagnosis of chronic Lyme disease is accurate, and approaching them with compassion and care is paramount.
Gorski says: Calling something a fake disease in essence dismisses the symptoms. Calling something a fake diagnosis I think acknowledges that people are experiencing symptoms, that there appears to be something wrong, while at the same time saying that the label that has been put on that constellation of that symptoms is not based in science.
Its also worth noting that the medical establishment has been wrong many times before, and will be again. Doctors used to believe peptic ulcers couldnt be caused by bacteria, Ehlers-Danlos syndromes were very rare diseases and smoking was harmless. Perhaps the chronic Lyme sceptics will all be proven irrefutably wrong one day, and this particular tick-borne bacteria is responsible for debilitating chronic illness on a gigantic scale. Or maybe its a misdiagnosis of a constellation of conditions with similar symptoms, like chronic fatigue or fibromyalgia. What is vital is that patients are taken seriously when presenting with complex symptoms, and not dismissed by their doctors and sent to hunt for answers elsewhere.
Testing Testing Can You Find Me
Tests for Lyme disease focus on measuring a patients antibodies, rather than the bacteria itself, in a process known as serologic testing. The US Centers for Disease Control require two-tiered testing to establish a Lyme disease diagnosis, and both tiers need to come back positive for a diagnosis to be confirmed.
Due to the complexity of the process, there are significant ambiguities in testing best practice across the medical system. Writing in The Atlantic, Meghan ORourke describes how her doctor sent her bloods to three labs, two of which gave a positive reading on one part of the test but not the other, and the third of which came back negative on both parts. ORourke was informed she probably had Lyme disease, despite not meeting CDC guidelines for a Lyme diagnosis.
Chronic Lyme thus becomes something of a self-fulfilling prophecy. Any ache or ailment could be a symptom and blood test results can be interpreted as indicative of Lyme disease against official guidelines, or even confirm the presence of the disease when it isnt there.
Bite prevention expert Howard Carter says: Antibodies to Lyme disease take a few weeks to form if you have an early test and youve got a puncture mark or have removed the tick yourself you can get a false re-assurance, so you really need to wait for six weeks before requesting a blood test.
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What Should I Do If I Am Bitten By A Tick
If you experience a tick bite, the best way to remove it is by taking the following steps:
- Tug gently but firmly with blunt tweezers near the “head” of the tick at the level of your skin until it releases its hold on the skin.
- Avoid crushing the tick’s body or handling the tick with bare fingers as you could exposure yourself to the bacteria in the tick.
- Wash the bite area thoroughly with soap and water.
- DO NOT use kerosene, petroleum jelly , or hot cigarette butts to remove the tick.
- DO NOT squeeze the tick’s body with your fingers or tweezers.
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.
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Chronic Lyme Disease Treatment Protocols
Unfortunately, there is no standard chronic Lyme disease treatment or therapy because the symptoms can vary so greatly between individuals. On top of that, there is no FDA-approved treatment for prolonged cases of Lyme disease. However, patients will often undergo a variety of treatment that includes antibiotics, IV therapy, and lifestyle changes.
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Ptlds Diagnosis And Treatment
When it comes to diagnosis, both camps of doctors those who believe Lyme disease bacteria can remain in the body after initial antibiotics treatment and those who dont buy it first try to figure out if something else is causing symptoms that seem to be causing PTLDS.
Doctors also order blood tests to see if the patient has antibodies indicating a past Lyme disease infection.
When PTLDS is the only explanation for symptoms, treatment focuses on symptom management. For example, if you have general pain or headaches, you can work with a neurologist to see if you might benefit from certain medications.
As you can imagine, treatment is symptom-based. Fatigue, aches and pains, balance complaints and cognitive issues are all addressed individually. We also encourage patients to exercise regularly, maintain good sleep hygiene, limit alcohol consumption and maintain a healthy diet, Sutherland says. Sometimes, psychological counseling plays a part in treatment, as many patients feel frustrated when extensive testing comes back negative.
How Is Lyme Disease Diagnosed And Treated
Lyme disease is usually diagnosed when a person develops a bull’s-eye rash, flu-like symptoms , or both. These symptoms usually start a few days or weeks after the person is bitten by an infected tick.
A two-step blood test can verify the presence of Lyme disease antibodies, although it does take a few weeks for those antibodies to develop. And despite what some physicians and advocacy groups claim, a blood test is the only way Lyme disease can be confirmed, Larry Zemel, MD, Professor of Pediatrics at the University of Connecticut School of Medicine told Health. “Some healthcare providers say they can diagnose Lyme even when patients test negative repeatedly, but that has not been borne out by any scientific study,” said Dr. Zemel.
When people are diagnosed with Lyme disease in its early stages, a 10- to 20-day course of oral antibioticsusually with a drug called doxycyclinewill clear the infection and help them feel better fairly quickly. “This cures the vast majority of people, and they have a 100% recovery with no lasting effects,” said Dr. Zemel.
If Lyme disease isn’t diagnosed right away, it can cause more serious symptoms like arthritis and memory problems. These people may need a full month of oral antibiotics, said Dr. Zemel. About 20% of these patients will need IV antibiotics , and they may also need other medications to treat symptoms like pain and muscle stiffness.
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Is Chronic Lyme Disease A Real Thing
Curated by Claudia Shannon / Research Scientist / ishonest
Lyme disease can usually be cured with antibiotics, but there is debate in the scientific community about people whose Lyme disease is chronic.
Lyme disease is a bacterial illness carried by ticks. Although other animals are capable of carrying the bacteria, transmission to humans from other animal sources has not been fully supported by the current scientific literature. The Infectious Diseases Society of America maintains that it is easily diagnosed and usually curable with a short course of antibiotics. The IDSA represents 9,000 U.S. doctors.
But a growing number of Americans are saying their Lyme disease symptoms persist well beyond the three-week course of antibiotic treatment. They complain of muscle aches, headaches, and fatigue. They have found doctors to treat them with more antibiotics, but not without controversy.
The number of Lyme disease cases in the United States more than doubled from 1995 to 2009, to almost 30,000, according to the IDSA, but the U.S. Centers for Disease Control and Prevention estimates that Lyme disease cases may be up to 10 times higher than reported. Talk of chronic Lyme disease has been gaining momentum, with famous doctors such as Dr. Richard Horowitz making the talk show rounds.
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Yes Chronic Lyme Disease Is A Real Condition As With Many Chronic Conditions There Is Debate Surrounding Chronic Lyme
Why is there debate about CLD? Through the years, we have learned that evidence of illness can be present for a variety of conditions, for which there is no explanation of origin. The most widely-known of these conditions is Fibromyalgia, which was fist accepted as a diagnosable condition by the American Medical Association in 1987. Recent cases of lingering *COVID-19-related illnesses have brought chronic Lyme disease to the forefront. This is good news for many CLD sufferers.
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Are Antibiotics A Prescription For False Hope
Yang said doctors who prescribe long-term antibiotics are doing so needlessly and giving suffering patients false hope.
In some cases, people may have serious illnesses that do not get diagnosed because they think this is the answer, Yang told Healthline. Also note that many people feel better on antibiotics, but the mind is powerful, and it is well known that the placebo effect is generally 40 to 50 percent when the evaluation of a treatment is subjective .
In some cases, people may have serious illnesses that do not get diagnosed because they think this is the answer. Also note that many people feel better on antibiotics, but the mind is powerful, and it is well known that the placebo effect is generally 40 to 50 percent when the evaluation of a treatment is subjective. Dr. Otto Yang, UCLA
Cameron told Healthline that those bitten by a tick may not only be suffering from Lyme disease, but from other co-infections as well. Testing for co-infections is not easy.
He argues in his paper that doctors frequently treat patients for recurring infections, and Lyme disease should be no different. They act as though the jurys deliberated and theres no reason to reconsider their position, he says of the stance taken by the IDSA.
Microbiologic Investigations Into Chronic Lyme Disease
There is very little microbiologic evidence that supports persistent B burgdorferi infection in patients who lack objective manifestations of Lyme disease, such as erythema migrans, arthritis, meningitis, and neuropathies. Advocates for CLD contend that our ability to detect B burgdorferi is hampered by current technology and an incomplete scientific understanding of B burgdorferi, and that conventional diagnostic testing misses patients with CLD.55,56 Naturally, this raises the question of why we should assume that chronic B burgdorferi infection exists at all if we are so ill-equipped to detect it. Even when chronically symptomatic patients have a well-documented history of treated Lyme disease, investigators have been unable to document persistent infection.5759 A recent study in which ticks were allowed to feed on persistently symptomatic posttreatment patients yielded molecular evidence of B burgdorferi in 1 of 16 patients and no patient had cultivatable organisms.60
Because validated testing methods fail to support the connection between B burgdorferi and clinically diagnosed CLD, physicians who specialize in CLD often turn to alternative tests. This has included the use of novel culture techniques, detection of B burgdorferi DNA in urine specimens, and enumeration of CD57-positive lymphocytes.6165 Independent investigations, however, have repudiated the validity of these tests.6670
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Chronic Lyme Disease Symptoms
Chronic symptoms of Lyme disease arent always clear cut and manifest similarly to other conditions, which can lead to misdiagnosis. Chronic Lyme disease is often used to describe a range of physical, cognitive, and emotional symptoms that crop up after getting Lyme disease and persist for months to years after infection, Shah says. Common persistent symptoms include:
- Long-lasting, severe fatigue
- Neurological symptoms such as brain fog, cognitive impairment, or facial palsy
- Sensory sensitivity, particularly to lights and sounds
- Anxiety or depression
- Gastrointestinal issues, such as abdominal pain, nausea, blood in the stool, or chronic diarrhea
Many tick-borne infections go misdiagnosed for months because these nonspecific symptoms mirror other illnesses, Shah explains, adding that these symptoms can mimic chronic fatigue syndrome, fibromyalgia, ALS, Alzheimers disease, depression, insomnia, and autoimmune disorders such as rheumatoid arthritis and multiple sclerosis .
Chronic Lyme can also trigger an auto-immune response or make a person more susceptible to other infections, systemic inflammations, and imbalances in the gut microbiome, according to Dr. Kellman.
If you suspect you have chronic Lyme, your first step should be to a primary care provider you trust who can help you diagnose by eliminating other potential illnesses.
Some Chronic Lyme Disease Symptoms
As mentioned, chronic Lyme disease consists of a broad cluster of physical, cognitive, and psychiatric symptoms. Some of these symptoms are much more common, while others almost never occur, but can be deadly. But even the less severe symptoms, such as chronic fatigue and pain, can lead to drastic changes in quality of life for chronic Lyme patients.
Chronic Lyme survivors have reported experiencing the following symptoms for months to years after infection:
- Intermittent fevers, chills, and sweats
- Chronic inflammation
- Numbness and tingling in the limbs
- Dizziness and shortness of breath
- Heart palpitations and irregular heartbeat
- Anxiety and paranoia
- Multiple-chemical sensitivities
Chronic Lyme disease can be linked to deadly symptoms, such as Lyme carditis .
According to Lymedisease.org, studies consistently show that chronic Lyme disease patients have poorer quality of life than those with other chronic diseases. One of their own studies showed that 75% of surveyed patients reported at least one symptom as severe or very severe.
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Chronic Lyme Disease Vs Ptlds
The terms chronic Lyme disease and Post-Treatment Lyme Disease Syndrome are sometimes used interchangeably. However, PTLDS is slightly more restrictive, referring to patients who have received treatment for Lyme disease but go on to experience Lyme disease symptoms. It does not include those who received a misdiagnosis or delayed diagnosis and have developed chronic symptoms of Lyme disease before receiving any kind of treatment.
The CDC defines PTLDS as generalized and/or recurring pain, fatigue, and cognitive difficulties that last for more than 6 months after treatment. These mirror symptoms associated with chronic Lyme disease, with or without treatment.