Two Standards Of Care For Lyme Disease Treatment
There is significant controversy in science, medicine, and public policy regarding Lyme disease. Two medical societies hold widely divergent views on the best approach to diagnosing and treating Lyme disease. The conflict makes it difficult for patients to be properly diagnosed and receive treatment.
One medical society, the Infectious Diseases Society of America , regards Lyme disease as hard to catch and easy to cure with a short course of antibiotics. IDSA claims that spirochetal infection cannot persist in the body after a short course of antibiotics. The group also denies the existence of chronic Lyme disease.
In contrast, the International Lyme and Associated Diseases Society , regards Lyme disease as often difficult to diagnose and treat, resulting in persistent infection in many patients. ILADS recommends individualized treatment based on the severity of symptoms, the presence of tick-borne coinfections and patient response to treatment.
LDo believes that patients and their doctors should make Lyme disease treatment decisions together. This requires that patients be given sufficient information about the risks and benefits of different treatment options. Then, patient and health care provider can collaborate to reach an informed decision, based on the patients circumstances, beliefs and preferences.
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.
Can Chronic Lyme Be Cured Dr Christine Green Answers Your Questions
Christine Green, MD, is a Stanford-trained, board-certified family medicine physician with 30 years of experience treating patients with tick-borne illness.
On the board of LymeDisease.org, Dr. Green is also Co-director of Education for Invisible International,, is on Bay Area Lyme Foundations Scientific Advisory Board and has served on the Education Committee for ILADS.
In this Q& A, she discusses common questions asked by patients about diagnosing and treating Lyme and other tick-borne diseases.
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Treatment For Lyme Starts One Year Or More After Tick Bite
In my opinion and experience, only a rare person in this group goes on to cure Lyme disease. Most people go into remission. In remission, the germs still live in a person, but the immune system keeps them under control.
About 85 to 90% of people treated with long term antibiotics and methods to boost the immune system, can go into remission. For the best chance of reaching remission I suggest following the first 12 steps in The Ross Lyme Support Protocol. These steps
- get rid of coinfections,
- support the adrenal and thyroid glands, and
What Causes Chronic Lyme Disease
The CDC says 10% to 20% of people treated for Lyme disease develop ongoing symptoms. These can include fatigue, joint and muscle pain, and thinking problems. The symptoms can last more than 6 months.
No one knows what causes chronic Lyme disease. One theory is the infection damages tissues or alters the immune system.
Some pain experts think the immune systemâs reaction to the Lyme infection causes changes that increase pain sensations and contribute to fatigue and poor sleep.
More research is underway.
No matter the cause, the symptoms are real. But most patients get better over time.
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How To Avoid Tick Bites
To reduce the chance of being bitten:
- cover your skin while walking outdoors and tuck your trousers into your socks
- use insect repellent on your clothes and skin products containing DEET are best
- stay on clear paths whenever possible
- wear light-coloured clothing so ticks are easier to see and brush off
Does Lyme Disease Go Away On Its Own
It’s certainly possible for people to get Lyme disease and to clear the infection on their own, without treatment, said Dr. Kuritzkes. “But it’s better to be treated, because some of the complicationslike arthritis and myocarditis and damage to the central nervous systemcan be very serious.”
The type of bacteria that causes Lyme disease is in the same general family as the type that causes syphilis, said Dr. Kuritzkes. “That doesn’t mean anything similar in terms of transmission, but syphilis has several different phases, with primary and secondary and tertiary symptoms,” said Dr. Kuritzkes. “The infection can hide out in the body for a long time and can cause problems down the road if it’s not treated.”
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What Is Post Treatment Lyme Disease
Post Treatment Lyme Disease represents a research subset of patients who remain significantly ill 6 months or more following standard antibiotic therapy for Lyme disease. PTLD is characterized by a constellation of symptoms that includes severe fatigue, musculoskeletal pain, sleep disturbance, depression, and cognitive problems such as difficulty with short-term memory, speed of thinking, or multi-tasking. In the absence of a direct diagnostic biomarker blood test, PTLD has been difficult to define by physicians, and its existence has been controversial. However, our clinical research shows that meticulous patient evaluation when used alongside appropriate diagnostic testing can reliably identify patients with a history of previously treated Lyme disease who display the typical symptom patterns of PTLD.
Hunting For Alternative Drug
Frustrated by the lack of treatment options for Lyme disease patients with lingering symptoms, Rajadas and his team began hunting for a better alternative in 2011. In 2016, they published a study in Drug Design, Development and Therapy that listed 20 chemical compounds, from about 4,000, that were most effective at killing the infection in mice. All 20 had been approved by the Food and Drug Administration for various uses. One, for instance, is used to treat alcohol abuse disorder.
In this most recent study, azlocillin, one of the top-20 contenders, was shown to eclipse a total of 7,450 compounds because it is more effective in killing B. burgdorferi and causes fewer side effects. Lyme disease affects more than 300,000 people annually, according to the Centers for Disease Control and Prevention. It can affect various organs, including the brain, skin, heart, joints and nervous system, and cause heart problems and arthritis if untreated. Symptoms include fever, headaches, chills, and muscle and joint pain.
Traditional antibiotics, such as doxycycline, are effective as an early course of treatment for the infection in the majority of patients, but it remains unclear why these drugs fail to treat 10% to 20% of patients, Rajadas said.
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Stage : Early Disseminated Lyme Disease
If stage 1 Lyme disease remains undiagnosed and untreated, it can progress to stage 2, or early disseminated, Lyme disease. This stage occurs 312 weeks after the initial tick bite.
The term disseminated indicates that the bacteria have spread throughout the body. At this stage, the infection may affect the following tissues:
- the skin
- nervous system
A person who has progressed to stage 2 Lyme disease may develop new symptoms alongside those from stage 1. These new symptoms may include:
- new rashes across the body
- conjunctivitis or vision problems
- poor memory and concentration
Stage : Late Disseminated Lyme Disease
Stage 3 or late disseminated Lyme disease is the final stage of the disease. A person may enter this stage if they did not receive treatment for Lyme disease in the early stages, or if their symptoms persisted despite treatment. As such, doctors sometimes refer to this stage as chronic or post-treatment Lyme disease .
Stage 3 Lyme disease can occur after an infected tick bites a person.
A person with stage 3 Lyme disease may experience additional symptoms, including:
- severe joint pain and swelling, known as chronic Lyme arthritis
- heart palpitations or irregular heartbeat, due to Lyme carditis
- inflammation of the brain and spinal cord
- mental fogginess
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How Is Lyme Disease Treated
If Lyme disease is caught early, it will typically be treated with a short course of an antibiotic such as doxycycline or amoxicillin.
While new studies are in the works, there are no current proven treatments for the minority of people who develop post-treatment Lyme disease syndrome. Most of these individuals will find that their post-treatment Lyme disease heals on its own over the course of a few months.
Can Lyme Disease Be Prevented
Not all cases of Lyme disease can be prevented. But you can help protect your family from tick bites. If you go into an area where ticks live, be sure to:
- Stay in the middle of the trail, instead of going through high grass or the woods.
- Wear closed shoes or boots, long-sleeved shirts, and long pants. Tuck pant legs into shoes or boots to prevent ticks from crawling up legs.
- Use an insect repellent.
- Consider treating clothing and gear with permethrin to repel ticks. When used properly, permethrin is safe for all ages. But don’t use it on clothing or other material a child may suck on or chew.
- Wear light-colored clothing to help you see ticks more easily.
- Shower and wash hair after being outside to remove ticks before they attach.
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Q: Once Diagnosed How Should You Treat Lyme Disease
Research over the last three decades suggests that Lyme bacteria have multiple ways of evading the human immune system and that treating acute Lyme with 21 days of antibiotics fails approximately a third of patients.
For that reason, I treat in two phases. For early Lyme, I treat with four weeks of doxycycline, amoxicillin, or cefuroxime antibiotics.
I follow this up with four more weeks of drugs that prevent and eradicate persister forms of the bacteria. The persisters are drug-tolerant and can revert to an active infection once the antibiotics are stopped.
I aggressively treat late-Lyme patients who have severe degenerative neurologic or rheumatologic cases. As noted above, the very sick patients frequently have a mixture of tick-borne infections.
For these patients, I choose a combination of oral or, when needed, intravenous antibiotics that target the pathogens known to be present.
The Experience Of Lyme Disease
In our book, Conquering Lyme Disease: Science Bridges the Great Divide, we review several of the key features of Lyme disease that can make the experience of this illness so challenging, including:
- The politically charged climate
- The protean nature of manifestations of the illness
- The waxing and waning course of symptoms
- The psychological ramifications of having an “invisible” chronic illness and the experience of invalidation
- The challenge of having a disease that affects the brain and sensory system
- The impact of uncertainty surrounding diagnosis, treatment, and prognosis
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Can Lyme Disease Be Cured
Most Lyme disease cases can be cured with a two- to four-week course of antibiotics, says Dr. Kaufman. This is especially true if youre treated in the early stages of infection, which is why its so important to be aware of any potential exposure and symptoms.
In rare cases, however, some patients will continue experiencing symptoms such as pain, fatigue and numbness, and will be diagnosed with post-treatment Lyme disease syndrome.
Q: Whats The Best Test For Diagnosing Lyme Disease
First and foremost, Lyme disease, as with any disease, should be diagnosed based on a clinical history and physical exam, not by test results alone.
Its important to note that the complex, conservative two-tiered testing criteria for CDC positive cases was developed for disease-tracking only. It shouldnt be used by physicians as the sole criteria for diagnosis or denying treatment to patients.
Whats more, not all Lyme tests are created equal. The major labs typically look for only one strain of Lyme bacteria, the B31 strain of Borrelia burgdorferi. I prefer using specialized labs that test for multiple Lyme strains. Three of the labs I use are MDL, Galaxy, and IGeneX.
One tick can inject multiple species of disease-causing microbes in a single blood meal, so, based on symptoms, I sometimes test for other tick-borne infections.
If a patient has night sweats, shortness of breath, stabbing chest pains, or autonomic symptoms , Ill test for Babesia, a malaria-like red blood cell infection.
For a pinprick rash on the extremities and/or severe illness, Ill test for spotted fever. Bartonellosis can present in many ways, including neuropathy, or neuropsychiatric symptoms, such as panic attacks, rages, psychosis, and obsessive-compulsive disorders.
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What Are The Side Effects Of Lyme Disease Treatments
Antibiotics, like all medications, have the potential for side effects. Any antibiotic can cause skin rashes, and if an itchy red rash develops while on antibiotics, a patient should see their physician. Sometimes symptoms worsen for the first few days on an antibiotic. This is called a Herxheimer reaction and occurs when the antibiotics start to kill the bacteria. In the first 24 to 48 hours, dead bacterial products stimulate the immune system to release inflammatory cytokines and chemokines that can cause increased fever and achiness. This should be transient and last no more than a day or two after the initiation of antibiotics.
The most common side effect of the penicillin antibiotics is diarrhea, and occasionally even serious cases caused by the bacteria Clostridium difficile. This bacterial overgrowth condition occurs because antibiotics kill the good bacteria in our gut. It can be helpful to use probiotics to restore the good bacteria and microbiome balance.
Chronic Lyme Disease Vs Post
Patients typically use the term chronic Lyme disease to describe the cluster of symptoms that started after getting Lyme disease and that persist despite having received a course of antibiotic treatment which has been deemed curative by the Infectious Diseases Society of America. Patients say, “I’m not cured. I have symptoms now that I never had before Lyme disease. I’m fatigued 90% of the day. My muscles ache. My brain is in a fog. I can’t think clearly any more. I’m super sensitive to light and sound. What is going on? Chronic Lyme disease does exist – I’m a living example of it!”
Whatever one calls it, the experience is the same. Most often these patients experience profound fatigue, pain, and/or cognitive impairment. Mild to moderate levels of depression and anxiety may also accompany these symptoms, as the functional limitations can lead to social isolation, inability to work, and loss of sense of one’s identity as a provider, caretaker, or friend. Sometimes patients find themselves identifying with Job – the just and good man in the Bible whose life was wrecked by illness, death of loved ones, and economic disaster he felt tormented by God.
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When To See A Doctor
A person should see their doctor if they get a tick bite as deer ticks and black-legged ticks can carry Lyme disease. If a person is unsure about the type of tick that bit them, they can bring it with them in a sealed container.
The symptoms of Lyme disease can take some time to develop. Sometimes, a person may not notice the tick, and it will fall off their body before they have any symptoms.
It is also possible that a doctor will instruct a person to wait a month before undergoing a test for Lyme disease.
During this time, a person should look for early signs of Lyme disease. These include:
Chronic Lyme Disease Patients Profoundly Debilitated
Many patients with chronic Lyme disease are profoundly debilitated. Investigators of the four NIH-sponsored retreatment trials documented that the patients quality of life was consistently worse than that of control populations and equivalent to that of patients with congestive heart failure. Pain levels were similar to those of post-surgical patients, and fatigue was on par with that seen in multiple sclerosis.
An LDo published survey of over 3,000 patients with chronic Lyme disease found that patients suffer a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Over 70% of patients with chronic Lyme disease reported fair or poor health. Similar results have been found in other studies. Many of the symptoms associated with Lyme disease are common in other diseases. The CDC surveillance criteria for confirmed cases specifically exclude most of the symptoms that patients report, including fatigue, sleep impairment, joint pain, muscle aches, other pain, depression, cognitive impairment, neuropathy, and headaches. However, these common symptoms can be severe and may seriously affect quality of life.
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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.