What Treatment Approach Did Well Patients And High Responders Use
We asked patients what their treatment approach was and listed four options a) antibiotics, b) alternative treatments, c) both antibiotics and alternative treatments, and d) no treatment at all. High treatment response was most closely associated with the use of antibiotics compared to patients who were using alternative treatments alone or forgoing treatment altogether. Treatment with antibiotics for Lyme disease was far higher among well patients and high responders compared to non-responders .
As you can see in the chart below, many patients who were taking antibiotics were also taking herbal supplements, which can be antimicrobial . So it is possible that there was a synergistic effect between antibiotics and herbal supplements.
When To Consider Antibiotic Therapy
Last Updated 11/01/16
There is little consensus, however, on antibiotic use for chronic Lyme disease. At present, there are no studies showing benefit from long term use of antibiotic therapy for treatment of Lyme disease and the practice is not condoned by the conventional medical community.
The primary problem is that synthetic antibiotics do not kill only pathogens . Antibiotics kill all bacteria.
The types of microbes associated with Lyme disease are survivors. When full guns are levied at the microbiome , stealth microbes are generally the last ones standing. Normal flora are very susceptible to being killed by antibiotics. The harder and longer target stealth microbes are targeted with potent antibiotics, the higher the possibility that normal flora will get caught in the crossfire.
Destruction of normal flora shifts the balance of the microbiome from friendly microbes to pathogens . Prolonged antibiotic use allows these pathogens to become antibiotic resistant. The total process places undue stress on an already overly stressed immune system.
Indiscriminate use of high potency antibiotics destroys normal flora, allows potential pathogens to flourish, causes yeast overgrowth in the gut, fosters antibiotic resistance, and disrupts immune function.
It is impossible to overcome stealth microbes without a healthy immune system.
Prolonged Antibiotic Use Has No Benefit For Persistent Symptoms Of Lyme Disease
- Radboud University
- Much uncertainty exists about the cause and treatment of persistent symptoms after a previous episode of Lyme disease. A large-scale study of 280 patients has shown that long-term treatment with antibiotics does not lead to better results than short-term treatment, a study concludes.
Much uncertainty exists about the cause and treatment of persistent symptoms after a previous episode of Lyme disease. A large-scale study of 280 patients has shown that long-term treatment with antibiotics does not lead to better results than short-term treatment. This is the main conclusion of Radboud university medical center’s PLEASE study, which was published in the New England Journal of Medicine on March 30.
The PLEASE study is the first randomized study in Europe to examine the effects of long-term antibiotic use on chronic Lyme symptoms. The study was done because there is much uncertainty about the optimal treatment of people with persistent symptoms after a tick bite. It included 280 people with symptoms such as muscle and joint pain, fatigue and concentration problems. All of them were previously diagnosed with Lyme disease.
Persistent Lyme symptoms
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How Do Patients Respond To Treatment
We looked at patients with chronic Lyme diseasethose who remained ill for six or more months following treatment with antibiotics for Lyme disease . The first thing we did was identify different patients as well, high responders, low responders, or non-responders. Well patients responded positively to a survey question asking if they were well or remained ill. Those who remained ill were asked whether their condition had changed as a result of treatment. Those who said they were unchanged or worse were categorized as non-responders. Patients who said that they were better or worse following treatment, were asked how much better or worse. Those who had improved substantially were deemed high responders.
59% of patients had improved with treatment and 42% were either well or high responders. The focus of our study was on this latter group. You might wonder whether 42% response is considered good compared to other drugs. Heres what the prior head of GlaxoSmithKline said about treatment effectiveness rates of drugs in general .
The vast majority of drugs more than 90 per cent only work in 30 or 50 per cent of the people. Drugs out there on the market work, but they dont work in everybody. Dr. Allen Roses, GlaxoSmithKline
So you can see that a 42% rate of substantial improvement is within the range of most drugs on the market.
Awareness Of Lyme Disease
1.1.1 Be aware that:
the bacteria that cause Lyme disease are transmitted by the bite of an infected tick
ticks are mainly found in grassy and wooded areas, including urban gardens and parks
tick bites may not always be noticed
infected ticks are found throughout the UK and Ireland, and although some areas appear to have a higher prevalence of infected ticks, prevalence data are incomplete
particularly high-risk areas are the South of England and Scottish Highlands but infection can occur in many areas
Lyme disease may be more prevalent in parts of central, eastern and northern Europe and parts of Asia, the US and Canada.
1.1.2 Be aware that most tick bites do not transmit Lyme disease and that prompt, correct removal of the tick reduces the risk of transmission.
1.1.3 Give people advice about:
where ticks are commonly found
the importance of prompt, correct tick removal and how to do this
covering exposed skin and using insect repellents that protect against ticks
how to check themselves and their children for ticks on the skin
sources of information on Lyme disease, such as Public Health England’s resources and guidance on Lyme disease and organisations providing information and support, such as patient charities.
For a short explanation of why the committee made the recommendations and how they might affect practice, see the rationale and impact section on awareness of Lyme disease.
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What Is Chronic Lyme Disease
Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with oral antibiotics. In some patients, symptoms, such as fatigue, pain and joint and muscle aches, persist even after treatment, a condition termed Post Treatment Lyme Disease Syndrome .
The term chronic Lyme disease has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, it has also been used to describe symptoms in people who have no clinical or diagnostic evidence of a current or past infection with B. burgdorferi . Because of the confusion in how the term CLD is employed, and the lack of a clearly defined clinical definition, many experts in this field do not support its use.
Why This Is Important
The use and duration of antibiotics for chronic Lyme disease treatment is controversial because there is no biomarker that can determine whether the Lyme bacteria has been eradicated in CLD patients. Patients are often told that either chronic Lyme disease does not exist or that it is incurable. If this were true, we would not expect more well and substantially improved patients to be taking antibiotics. Instead, we might have expected the percentage of people using antibiotics to be roughly the same among the patient subgroups.
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Herbs Are A Good Choice For Chronic Disease
Herbs with antimicrobial properties work quite differently than synthetic antibiotics. Plants have to deal with threatening microbes just like we do. Plants, however, tackled the friend versus foe problem a very long time ago. Plants produce a spectrum of chemical substances that selectively target pathogens and spare normal flora. The plants that we call medicinal herbs are the ones that mesh particularly well with human biochemistry.
Certain herbs are particularly good for suppressing stealth microbes and enhancing immune function. These are the herbs commonly chosen for use in Lyme disease. Because most medicinal herbs are very safe, do not disrupt normal flora and immune function, and offer a host of other beneficial properties, herbs can be used continuously for long periods of time.
Medicinal herbs, however, are not nearly as potent as synthetic antibiotics.
There are certain situations where the potency of synthetic antibiotics may be valuable.
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.
- Tracie White
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Fake 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.
Myth: The Medical Establishment Has No Idea What Causes Post
FACT: If youve been dealing with chronic Lyme+, then chances are youve heard this statement. As previously noted, PTLDS is a misleading term given the wealth of published information that these organisms can persist and indeed continue to thrive despite drugs that were initially thought to kill them but dont. Its an illogical construct. Think about it: What are the chances that a second disease of mysterious origins , but with the same symptoms as the first disease, would come and replace the first disease? What are the odds, in light of published evidence that the pathogens that cause the first disease survive after both short- and long-term antibiotics? Consider also that there are numerous other chronic bacterial infections that require long-term combination antibiotic therapies: tuberculosis, leprosy, chronic coxiella, brucellosis, and Whipples disease, to name a few, some of which are included in what we term Lyme+. Many of the other members of Lyme+ are no different and should be included in the same category.
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Posttreatment Lyme Disease Syndromes: Distinct Pathogenesis Caused By Maladaptive Host Responses
Center for Immunology and Inflammatory Diseases, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Address correspondence to: Allen C. Steere, Massachusetts General Hospital, CNY 149/8301, 55 Fruit Street, Boston, Massachusetts 02114, USA. Phone: 617.726.1527 Email: .
J Clin Invest.
Lyme disease, which is epidemic in certain communities, primarily in the northeastern United States, is caused by the tick-borne spirochete Borrelia burgdorferi . When untreated, the disease usually occurs in stages with different manifestations at each stage . In the northeastern United States, the infection usually begins with a slowly expanding skin lesion, erythema migrans , often accompanied by nonspecific symptoms, including headache, myalgias, arthralgias, fever, malaise, and fatigue. Within weeks , neurologic or cardiac abnormalities may develop. Months later , usually following a latent period, intermittent or persistent monoarticular or oligoarticular arthritis commonly develops, lasting for several years, accompanied by minimal, if any, systemic symptoms. Rarely, patients have late neurologic involvement, characterized by a subtle encephalopathy or sensory polyneuropathy. Thus, in most patients, the natural history of Lyme disease, without treatment, is one of persistent infection for several years, with latent periods and changing system involvement.
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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Antibiotics And Alternative Medicine
Of course, LLMDs would beg to differ. Many maintain that one of the best ways to treat chronic Lyme patients is with a long-term course of antibiotics, claiming the typical month-long course of treatment isnt enough to eradicate the disease in certain individuals.
Londons Lyme Disease Clinic founder and medical director Dr Joshua Berkowitz says: Long-term treatment with antibiotics is necessary to target and kill all the different pleomorphic forms of the bacteria and parasitic infections associated with chronic Lyme disease. Most of these bacteria have the ability to survive based on different mechanisms and they can easily change their shape and surface.
They can hide in other body cells and in intracellular spaces, plus they can invade specific tissues like connected tissue where there is no presence of immune cells which can kill them off. With the support of antibiotics we are able to take care of all these escape mechanisms, but it requires long-term treatment to do so.
Many chronic Lyme patients given a long-term course of antibiotics report feeling better afterwards. But, feeling better on an antibiotic is not a sure fire way to establish that it has actually killed a harmful bacteria, and some argue this approach can actually be dangerous.
A 2015 report in Clinical Infectious Diseases found that the efficacy for these unconventional treatments could not be supported by scientific evidence, and many could potentially be harmful.
Steroid Use Can Lead To Long
Several studies have documented the consequences steroids pose to patients with Lyme disease. Most recently, researchers from Massachusetts Eye and Ear and Harvard Medical School published a retrospective study which described an “association between corticosteroid use in acute LDFP and worse long-term facial function outcomes.”
Physicians are warned of the importance in distinguishing between viral or idiopathic facial paralysis from Lyme disease-associated facial palsy. Authors of the study, Steroid Use in Lyme Disease-Associated Facial Palsy Is Associated With Worse Long-Term Outcomes, used the term Lyme disease-associated facial palsy rather than Bells palsy to highlight the differences in pathophysiologies between viral and idiopathic facial palsy.
LDFP was presumed to be the consequence of a humoral immune neuropathy rather than cell-mediated autoimmunity or edematous compressive neuropathy as seen with viral-induced Bells palsy. If LDFP is a humoral immune neuropathy, corticosteroid therapy may be ill-advised, states Jowett and colleagues.
Man with Bells palsy paralysis of the facial nerve.
The authors expressed concern that two-thirds of the 51 study participants had been prescribed corticosteroids.
Because corticosteroids are the standard of care for acute viral facial paralysis, it is not surprising that they were prescribed to nearly all patients who were initially misdiagnosed as having such.
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Antibiotics For Lyme Disease
How long to treat patients with Lyme remains an issue of controversy. With traditional antibiotic therapy, lasting 2-4 weeks, 10-20% of patients will have ongoing symptoms including fatigue, joint pain, insomnia and complaints of brain fog. Indefinite long-term treatment is advocated by ILADS , based on a patients symptoms. In contrast, IDSA only recommends 2-4 weeks’ treatment. The two groups are bitter adversaries.
A new study supports short-course treatmentbut is not entirely above criticism.
This study from the Netherlands, reported in the New England Journal of Medicine, was well designed, being randomized and double blind, and with a quasi-placebo group .
The upshot: There were no differences in the outcomes of the three treatment groupsbut some lingering questions remain. Notably, a large percentage of patients had side effects from the antibiotics, some quite serious.
Why is this important?
Lyme has been increasing, especially in the northeastern and upper Midwest portions of the U.S. The CDC now estimates there are about 300,000 cases of Lyme each year, with 30,000 reported cases.
But Lyme can be difficult to diagnose, and the assays miss a lot of patients . So if 20% of patients are left with persistent symptoms, that means that 60,000 people per year are being left with untreated problems that we just dont know what to do with. This study, along with others before it, suggests that longer antibiotics are not the answer.
The fine print: