The Chronic Lyme Controversy
Lyme disease, first identified in the United States in the 1970s, has grown into a health epidemic as the ticks that transmit it to humans expand their range. The Centers for Disease Control and Prevention now estimates that about 300,000 people in the U.S. become newly infected every year now. The symptoms can be debilitating, including neurological symptoms, extreme fatigue and muscle and joint pain.
When symptoms linger long after a diagnosed patient receives the standard antibiotic treatment, like the nurse in Maryland experienced, the patient may have a condition called post-treatment Lyme disease syndrome, a subset of chronic Lyme disease. Many experts in the field estimate about 10% to 20% of patients diagnosed with Lyme disease get this syndrome.
The controversy around chronic Lyme disease emerged when patient advocacy groups and some doctors began to use the term to describe patients who had nonspecific symptoms such as fatigue and pain, and testing did not always show that they had been exposed to Lyme disease.
At the heart of the controversy is the question: Can a person have a chronic bacterial infection that may not show up on tests?
These patients are frustrated with a medical establishment whose focus is on evidence-based treatment in a field where evidence is often lacking. Without a diagnosis by the establishment, these sick patients are often dismissed and cant get treated, leading to a sometimes toxic environment as they fight for treatment.
A Pioneer In Lyme Disease
Our program is led by Allen Steere, MD, one of the worldâs foremost experts on Lyme disease. Dr. Steere discovered the illness in 1976 and laid the foundation for understanding the many manifestations of the disease, including Lyme arthritis .
Today, Dr. Steere is researching why some patients with Lyme arthritis have persistent joint inflammation after using antibiotic therapy to eliminate the Lyme disease bacterium. This research is leading to improved diagnostic and treatment capabilities for such patients.
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Researchers Explore New Treatments For Chronic Lyme Disease
Some disease ecologists are projecting that this spring and summer will bring an increased risk for Lyme disease in the Northeast U.S. Although approximately 30,000 cases of Lyme disease are reported to the Centers for Disease Control and Prevention by state health departments each year, those reports account for only a fraction of the diagnosed cases of the disease. Studies that looked at the number of positive tests for Lyme disease at large clinical labs and the number of insurance claims for clinician-diagnosed Lyme disease put the estimate of annual cases in the U.S. closer to between 240,000 and 444,000.
In the majority of cases, if patients are diagnosed soon after the infection, the disease is successfully treated with antibiotics. However, approximately 10% to 20% patients develop a condition known as Post-Treatment Lyme Disease Syndrome . The symptoms of PTLDS include severe fatigue, muscle pain, arthritis, sleep disturbances, headaches, numbness or shooting pain in the arms, face, hands, or legs, hearing and vision problems, Bells palsy , and cognitive problems.
Unfortunately, PTLDS is often misdiagnosed because current tests for the disease do not accurately detect all infections. In addition, diagnosis can be complicated because the disease shares symptoms with a number of other conditions, including arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis.
New Lyme disease treatment approaches in the pipeline
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Why Is Lyme Controversial
Lyme disease can be difficult to diagnose. Because the signs and symptoms vary widely, its called the great imitator, said to mimic several chronic conditions. These more conventional diagnoses are among the most common resulting from Lyme bacteria infection:
- Depression and anxiety
- Parkinsons and Alzheimers
The difficulty of diagnosing chronic Lyme disease is compounded by one fundamental problem: Many doctors believe it doesnt even exist. Its important to understand that much of the controversy is driven by semantics.
Fibromyalgia and chronic fatigue syndrome are examples of idiopathic diseases. That means they dont have an apparent or known cause. To many people who are sick, chronic Lyme disease feels more accurate than an idiopathic label. It communicates that their symptoms are caused by an immune system response to infection. The mainstream medical community will use a more neutral term, post-treatment Lyme disease syndrome , to imply that symptoms might have several causes.
In a strict sense, Lyme disease is caused by Borrelia burgdorferi the specific bacterial species discovered in the town of Lyme, Connecticut. But there are actually more than 300 strains of Borrelia that can cause similar chronic symptoms. While only burgdorferi is widely recognized as causing Lyme, the general public tends to lump all Borrelia infections together. This causes confusion.
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What Makes Us Different
At Sunridge Medical our physcians use an expanded Western blot with revised requirement criteria for diagnosis. This allows for improved sensitivity for detection as well as a low false-positive rate. Our tests are run at Igenex Labs in California. Igenex is a laboratory that specializes in the testing of tick-borne illness exclusively and is considered the top laboratory for Lyme testing. If one is diagnosed with Lyme Disease, the treatment is not as simple as taking antibiotics. Since infection with Lyme can transform itself into various forms the standard, cell walled form, the non-cell walled form and the cyst form. Treatment with antibiotics alone is often ineffective as the antibiotic treatment is only effective against the standard, cell-walled form of Lyme.
With this being said, even using antibiotics for extended periods, such as months or even years can be of little benefit. It is important to have a multi-factorial, multi-system, integrative approach to be effective against Lyme Disease. At Sunridge Medical, our physicians use combination of medicines to treat the various forms of Lyme and at the same time to increase immune function, modulate hormones, treat coagulation disorders as well as detoxify the body of the infection. The integration of traditional medicine with holistic alternative remedies dramatically increases the success for the treatment of Lyme Disease.
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Considerations While On Lyme Treatment
Antibiotics can wipe out beneficial intestinal flora, leading to a wide variety of additional health problems. It is important to take probiotics while on antibiotics to maintain a healthy balance of gut bacteria. Furthermore, antibiotics may interact with other drugs, supplements or food. The National Institutes of Healths MedLinePlus website gives information about drug interactions.
Potential Treatment For Lyme Disease Kills Bacteria That May Cause Lingering Symptoms Study Finds
Screening thousands of drugs, Stanford scientists determined that in mice, azlocillin, an antibiotic approved by the Food and Drug Administration, eliminated the bacteria that causes Lyme disease.
Deer ticks are vectors of Borrelia burgdorferi, the bacteria that causes Lyme disease.Scott Bauer/USDA Agricultural Research Service
For decades, the routine treatment for Lyme disease has been standard antibiotics, which usually kill off the infection. But for up to 20% of people with the tick-borne illness, the antibiotics dont work, and lingering symptoms of muscle pain, fatigue and cognitive impairment can continue for years sometimes indefinitely.
A new Stanford Medicine study in lab dishes and mice provides evidence that the drug azlocillin completely kills off the disease-causing bacteria Borrelia burgdorferi at the onset of the illness. The study suggests it could also be effective for treating patients infected with drug-tolerant bacteria that may cause lingering symptoms.
This compound is just amazing, said Jayakumar Rajadas, PhD, assistant professor of medicine and director of the Biomaterials and Advanced Drug Delivery Laboratory at the Stanford School of Medicine. It clears the infection without a lot of side effects. We are hoping to repurpose it as an oral treatment for Lyme disease. Rajadas is the senior author of the study, which was published online March 2 in Scientific Reports. The lead author is research associate Venkata Raveendra Pothineni, PhD.
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Healing Chronic Lyme Disease With Antibiotics And Herbal Treatments
The lab results determine the appropriate course of action for you. An integrative, Lyme literate doctor would likely first recommend the use of antibiotics or a combination or antibiotics and herbals.
Some of the most effective natural treatments for chronic Lyme disease include grapeseed extract, otoba bark and cats claw. Herbal treatments are a personalized medical intervention based on your immune systems ability to handle the treatment. Some functional medicine doctors may also recommend antimalarial drugs for certain strains of Lyme which resemble malaria.
Azlocillin Comes Out On Top
The drug, which is not on the market, was tested in mouse models of Lyme disease at seven-day, 14-day and 21-day intervals and found to eliminate the infection. For the first time, azlocillin was also shown to be effective in killing drug-tolerant forms of B. burgdorferi in lab dishes, indicating that it may work as a therapy for lingering symptoms of Lyme disease.
Pothineni and Rajadas have patented the compound for the treatment of Lyme disease and are working with a company to develop an oral form of the drug. Researchers plan to conduct a clinical trial.
Rajadas is also a professor of bioengineering and therapeutic sciences at the University of California-San Francisco.
Other Stanford co-authors are Hari-Hara S. K. Potula, PhD, senior research scientist postdoctoral scholars Aditya Ambati, PhD, and Venkata Mallajosyula, PhD senior research scientist Mohammed Inayathullah, PhD and intern Mohamed Sohail Ahmed.
A researcher at Loyola College in India also contributed to the work.
The study was funded by the Bay Area Lyme Foundation and Laurel STEM Fund.
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Chronic Lyme Dos And Don’ts
Chronic Lyme disease is an ongoing Borrelia burgdorferi infection that can involve any body system or tissue. The infection produces a wide range of symptoms and signs, which can be debilitating for some patients. Common symptoms include severe fatigue, migratory musculoskeletal pain, headaches, and impaired memory. Unfortunately, chronic Lyme disease is complex and often misunderstood, which means that many patients will struggle to obtain the care they need to regain their health. Every patient concerned about Lyme disease and tick-borne illness should know the following.
Growing Need For Lyme Disease Experts And Research
The estimated incidence of Lyme disease in the United States has been steadily rising, to approximately 476,000 new cases annually. Despite antibiotic treatment, approximately 10-20% of these new infections will lead to distressing and potentially disabling symptoms, such as severe fatigue, joint and muscle pain, neurologic symptoms, and cognitive problems that may last for months or years.
There is limited expertise in treating the acute and chronic aspects of tick-borne diseases, making it difficult for patients to find high-quality, specialized care. In addition, little research has been done to determine which treatments are most effective for persistent symptoms, which can interfere with daily activities and work.
Like COVID-19 long-haulers, many people with tick-borne diseases were completely well until their infection precipitated a cascade of chronic, multi-system effects, says Brian Fallon, MD, director of the Cohen Center for Health and Recovery from Tick-Borne Diseases. A comprehensive evaluation takes time. In addition, the cost of care for patients with chronic symptoms can be prohibitive, requiring multiple visits to physicians who may not be aware of the latest research on tick-borne illnesses. Our center will be the first to address all of these issues by offering access to affordable care with experienced physicians while at the same time integrating research and physician training into our clinical model.
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Five Herbal Medicines Potent Against Tick
Research supported by Bay Area Lyme Foundation points to need for more effective treatments compared to currently utilized treatments for tick-borne infections
PORTOLA VALLEY, CA, March 9, 2021 Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the publication of new data finding that five herbal medicines had potent activity compared to commonly-used antibiotics in test tubes against Babesia duncani, a malaria-like parasite found on the West Coast of the U.S. that causes the disease babesiosis. Published in the journal Frontiers in Cellular and Infection Microbiology, the laboratory study was funded in part by the Bay Area Lyme Foundation. Collaborating researchers were from Johns Hopkins Bloomberg School of Public Health, California Center for Functional Medicine, and FOCUS Health Group, Naturopathic.
This research is particularly important as babesiosis is a significant emerging health risk. Due to limited therapeutics and a rise in treatment resistance, current treatment options for this disease are inadequate and many patients rely on herbal therapies for which there is only anecdotal evidence of efficacy, said co-author Sunjya K. Schweig, MD, Founder and Director, California Center for Functional Medicine and Scientific Advisory Board Member, Bay Area Lyme Foundation, who has also studied herbal treatments for Lyme disease.
About the Study
Plotting The End Of Lyme Disease
UPDATE: Resources and information on COVID-19 testing and more.
As people weary of being cooped up during a pandemic winter look forward to a summer outside, residents across the northeastern United States are once again confronted with a familiar virulent pathogen lurking in the woods and fields. Unlike coronavirus, however, this dangerous microorganism doesnt float through the airit enters the body through the bite of a tick.
Lyme disease has been a constant scourge since it was identified five decades ago on the Connecticut coastline, before spreading across the New England and Mid-Atlantic states. Caused by the bacterium Borrelia burgdorferi , the disease has long baffled scientists with its strangely stealthy manifestations.
While Lyme can sometimes be diagnosed early from its telltale bullseye-shaped rash, it often goes unnoticed for weeks in a person before it starts leading to complications including arthritis andin severe casesattacks on heart and brain tissue. While it can often be resolved with antibiotics, some 10 to 20 percent of patients see infections persist, with fatigue, joint pain, and mental impairment lasting months and even years. Sometimes doctors who treat such long-suffering patients arent even able to definitively pinpoint Lyme as the cause. All of those complications make the mission of the new Tufts Lyme Disease Initiative even bolder: Eliminate Lyme Disease by 2030.
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Disclosure And Management Of Potential Conflicts Of Interest
The Lyme conflict of interest review group consisting of 2 representatives from IDSA, AAN, and ACR were responsible for reviewing, evaluating, and approving all disclosures. All members of the expert panel complied with the consensus IDSA/AAN/ACR process for reviewing and managing conflicts of interest, which required disclosure of any financial, intellectual, or other interest that might be construed as constituting an actual, potential, or apparent conflict, regardless of relevancy to the guideline topic. Thus, to provide transparency, IDSA/AAN/ACR required full disclosure of all relationships. The assessment of disclosed relationships for possible COI by the IDSA/AAN/ACR review group was based on the relative weight of the financial relationship and the relevance of the relationship . For more information on allowable and prohibited relationships, please review Table 1 and Table 2. In addition, the IDSA/AAN/ACR adhered to Section 7 of the Council for Medical Specialty SocietiesââCode for Interactions with Companiesâ . The COI review group ensured that the majority of the panel and each cochair was without potential relevant conflicts . Each of the cochairs and all members of the technical team were determined to be unconflicted. See the notes section for disclosures reported to IDSA/AAN/ACR.
Late Or Chronic Lyme Disease Treatment
Experts agree that the earlier you are treated the better, since early treatment is often successful. Unfortunately, a substantial portion of patients treated with short-term antibiotics continue to have significant symptoms. The quality of life of patients with chronic Lyme disease is similar to that of patients with congestive heart failure. Doctors dont agree about the cause of these ongoing symptoms. The primary cause of this debate is flawed diagnostic testing. There is currently no test that can determine whether a patient has active infection or whether the infection has been eradicated by treatment.
The IDSA thinks Lyme disease symptoms after treatment represent a possibly autoimmune, post-Lyme syndrome that is not responsive to antibiotics. The IDSA essentially regards Lyme disease as an acute infection like strep throat that can be treated with a short course of antibiotics. The IDSA guidelines are now eight years old and do not reflect recent science.
ILADS physicians believe that ongoing symptoms probably reflect active infection, which should be treated until the symptoms have resolved. These physicians use treatment approaches employed for persistent infections like tuberculosis, including a combination of drugs and longer treatment durations. The ILADS guidelines have just recently been updated using a rigorous review of the medical literature.
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Has Niaid Looked At Whether Infection Persists After Antibiotic Therapy
Several recent studies suggest that B. burgdorferi may persist in animals after antibiotic therapy. In one study, NIAID-supported scientists found that remnants of B. burgdorferi remained in mice after antibiotic treatment. Another team of NIAID-supported investigators found that intact B. burgdorferi persist in nonhuman primates after antibiotic treatment. It was not possible to culture these bacteria and it is not clear whether they are infectious. More recent work by Hodzic et al. replicated the earlier finding of persisting DNA but non-cultivatable B. burgdorferi after antibiotic treatment using a mouse model. In 2017, scientists at the Tulane National Primate Research Centers, funded in part by an NIH research resources grant, reported evidence of persistent and metabolically active B. burgdorferi after antibiotic treatment in rhesus macaques.
In a first-of-its-kind study for Lyme disease, NIAID-supported researchers have used live, disease-free ticks to see if Lyme disease bacteria can be detected in people who continue to experience symptoms such as fatigue or arthritis after completing antibiotic therapy). This study remains underway.
Treatment All Under One Roof
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Chronic Lyme Disease is an immune-suppressing infection. Long-term immune suppression from Chronic Lyme Disease opens that gateway for multiple co-infections of every type of viral, bacterial, fungal, and parasitic.Lyme spirochetes, Bartonella, and the mosquito parasite, Protomyxzoa Rheumatica, will wrap themselves in biofilm if they are not immediately destroyed upon entry into our bloodstream. Biofilm is a protective shield manufactured by invading organisms to escape attacks from our antibodies, natural killer cells, and antibiotics.
Effective Chronic Lyme Disease Treatment requires a deep understanding of the Lyme Spirochete and tickborne infections like Bartonella and Babesia infections that live inside the cells of every organ in the body. Causing chronic illness and chronic Lyme disease symptoms throughout the entire body. Treatment for chronic Lyme disease requires much more than knowledge of microorganisms, antibiotics, and the immune system. Effective Chronic Lyme disease treatment requires additional expertise in the brain, and functions of multiple body systems including the endocrine system, gastrointestinal, and cardiovascular systems.
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