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.
The Very Strange Symptoms Of Lyme Disease
The symptoms of Lyme disease are vast and non-specific. This often leads to multiple misdiagnoses and improper treatment. Some of the more common symptoms include:
- Fever
- Lupus
- Multiple Sclerosis
This list is not comprehensive. These conditions are only some of the more common conditions that may actually be an undiagnosed infection of Borrelia. for a more comprehensive look at conditions that are commonly misdiagnosed.
Even if your symptoms fit, that doesnt mean you have Lyme disease. The first step in proper diagnosis is a proper medical history. That seemingly innocuous bite you got while hiking, that could be from a tick!
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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Have You Contracted Lyme Disease
In humans, Lyme disease is primarily spread through bites from infected ticks. In the United States and Canada, the primary species of Lyme carrying ticks are known as Ixodes. These ticks harbor the Lyme causing bacteria known as Borrelia burgdorferi and Borrelia mayonii.
In Europe, Lyme carrying ticks are known as Ixodes ricinus. To make matters worse, Europe has two additional strains of Lyme-causing Borrelia bacteria Borrelia afzelii and Borrelia garinii.
Ok, Im sure all of you are familiar with Lyme being transmitted through tick bites. But did you know that Lyme disease could be transmitted sexually?
At the time of my writing, there is still a great deal of controversy between camps about how Lyme disease can be spread. The CDC is quite firm in their stance that the only way in which Borrelia bacteria is transmitted to humans is through tick bites. They will admit that its possible for Lyme disease to be transferred through the blood but they have not seen any cases of this occurring to date.
Granted, the research journals the CDC quotes are from 1999 and 2001. A lot can change in the understanding of a disease in twenty years, and new research is suggesting that Lyme disease may be more likely to spread in the bedroom than on the hiking trails.
When it comes to Lyme disease, the medical community is conflicted. And I havent even talked about how Lyme disease is diagnosed.
Boiling Point: The Lyme + Fibromyalgia + Chronic Fatigue Connection
The misery of chronic illness is very real. But if youre the one whos suffering, you know that those around you typically cant see it or understand it not family, friends, or even medical providers.
They dont know what its like:
to push through oppressive fatigue day after day.to be tired beyond exhaustion but unable to sleep.to ache all over so badly that all you want to do is curl up in a ball inside a dark closet.to feel like you have the flu every day of your life but still have to go to work.to be isolated, both socially and professionally.to have bizarre symptoms that no one can put a finger on.to be told that all your lab tests are normal, even though something is obviously wrong.to become dependent on symptom-suppressing drugs prescribed by well-meaning doctors who didnt know enough to know better.
I can relate better than most doctors because Ive lived it. I am part of a growing epidemic of people suffering from chronic ailments that the modern medical system is at a loss to help.
An unexpected twist during my late 40s changed my life and career path forever. Unrelenting stress from a too-busy medical practice combined with an entanglement of unpredicted life stressors plunged me into chronic misery that took me 10 years to escape.
Then, I became the patient I could almost sense my doctors roll their eyes the minute I came through the door.
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What Chronic Immune Dysfunction Looks Like
Typical Chronic Immune Dysfunction symptoms include fatigue, decreased stamina, stress intolerance, feeling flu-like, muscle pain, joint pain, and sleep disturbances. Also common are temperature fluctuations, digestive dysfunction, mood changes, brain fog, skin rashes, a range of neurologic symptoms, and allergic-type reactions.
If you hadnt already guessed, the default diagnosis for this morass of symptoms is fibromyalgia, when pain is the primary symptom. Or, if fatigue predominates, its labeled myalgic encephalomyelitis/chronic fatigue syndrome. Both are conditions, not diseases, and thus, are considered to have no known cause or treatment by the conventional medical community.
If a patient presenting with CID symptoms has any history of tick exposure, some providers may consider the possibility of Lyme disease. On the surface, this might seem like a much more attractive diagnosis than fibromyalgia or chronic fatigue because it has a recognized cause , which implies a condition is treatable with antibiotics.
Unfortunately, this only applies to acute Lyme infection. Chronic Lyme disease is actually another consequence of CID, in which immune reaction is dysfunctional, and the entire microbiome is disrupted. Concentrations of borrelia are low and embedded deep in tissues where antibiotics cant reach them. As a result, treating chronic Lyme isnt much different from treating fibromyalgia or ME/CFS.
Persistent Symptoms After Treatment For Lyme Disease
It is well-recognized that some patients experience prolonged symptoms during convalescence from Lyme disease, and a subset suffer significant functional impairment., The most common complaints among such patients are arthralgias, myalgias, headache, neck and backache, fatigue, irritability, and cognitive dysfunction .
A working definition was developed to categorize patients with post-Lyme disease symptoms , those patients with persistent clinical symptoms after treatment for Lyme disease, but who lack objective evidence of treatment failure, reinfection, or relapse . PLDS is not strictly speaking a coherent clinical diagnosis its primary value has been to define a patient cohort for further study. Nonetheless, it is worth considering how it conceptually differs from CLD. To meet criteria for PLDS, patients must have unequivocal documentation of appropriately treated Lyme disease, lack objective manifestations of Lyme disease, and have persistent symptoms that cannot be explained by other medical illnesses. Thus, of patients with chronic symptoms that have been attributed to Lyme disease, those meeting criteria for PLDS are those for whom infection with B burgdorferi is most plausible. This makes the studies of PLDS paradigmatic for the understanding of CLD.
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Diagnosing Chronic Fatigue Syndrome
There is no single test for diagnosing CFS. Care providers usually must consider many diagnostic factors and the results of several tests to rule out other conditions, such as:
- Sleep disorders
- Medical conditions like anemia, diabetes, hypothyroidism, IBS
- Mood disorders and other mental health problems, e.g. depression and anxiety
Making matters more complicated, many of the above conditions tend to be comorbid with CFS. That is, they exist simultaneously and have a synergistic effect .
To be diagnosed with CFS, symptoms must last for 6 months, be of new onset, and not be alleviated by rest.
Touched By Lyme: The Difference Between Normal Tired And Too Tired To Breathe
Guest blogger Jennifer Crystal explores what fatigue can mean to a person with chronic Lyme disease.
A few weeks ago, there was a small fire in my apartment building which necessitated three separate evacuations between the hours of 2:00 and 5:00am. Needless to say, it was a long night, and no one got much sleep. The next day I felt buzzy and glazed over, the same feeling I used to get in college when I stayed up too late writing a paper. I was tired, but it was normal tired, not sick tired. Its a difference Lymies can recognize all too well, but one thats hard to distinguish when we talk about a general symptom of fatigue.
Fatigue can mean a lot of things. It can mean muscle soreness after a bike ride. It can mean feeling drained after a long day at work. It can mean droopy eyes, the desire to take a nap, the need for an extra cup of coffee. It can even mean the buzzed feeling I experienced after a night of little sleep. All of these descriptions fit into the category of normal tired. What makes them normal is the base level of health underlying them. If a person is otherwise healthy, they are able to push through symptoms of normal fatigue because their adrenals are working properly and their bodies are not worn down from fighting infection.
Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com.
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Extended Antibiotics For The Treatment Of Post
Three research groups have examined prospectively the effectiveness of prolonged antibiotic courses for post-Lyme disease syndromes., All trials had strict entrance criteria similar to the aforementioned definition of PLDS. The Klempner and colleagues 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. 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.
Real Solutions For Chronic Immune Dysfunction
I divide options for overcoming illnesses associated with Chronic Immune Dysfunction and stealth microbes into two categories: Heroic Therapies and Restorative Therapies.
A third category of solutions, Symptomatic Therapies, is best reserved for acute relief. Specifically directed at controlling symptoms, Symptomatic Therapies come mostly in the form of prescription drugs and contribute only minimally to healing and wellness.
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Fibromyalgia Chronic Fatigue Syndrome And Lyme Disease
Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture to Mass. CFIDS/FM Association members on November 3rd, 2002. His topic was The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues. Dr. Donta is a nationally recognized expert on Lyme disease. He is the Director of the Lyme Disease Unit at Boston Medical Center and a Professor of Medicine at BU Medical School. He is a bacteriologist and an infectious disease specialist, who views CFS and FM from that vantage point. He is also a consultant to the National Institutes of Health , and presented at NIHs scientific meetings on CFS research.What does Lyme disease have to do with CFS and FM you might be asking? Some people believe that Lyme disease may be one of the causative factors in both CFS and FM. Others believe that some CFS and FM patients are really misdiagnosed chronic Lyme disease patients and vice versa. Some believe that there is no such thing as chronic Lyme disease, instead these patients actually have CFS or FM. We asked Dr. Donta to help sort all this out.
Parallel Symptom Patterns
Flu-like illness, fever, malaise, fatigue, headache, muscle aches , and joint aches , intermittent swelling and pain of one or a few joints, bulls-eye rash, early neurologic manifestations include cognitive disorders, sleep disturbance, pain, paresthesias , as well as cognitive difficulties and mood changes.
Etiology
Central Nervous System Involvement
Clinical Diagnosis
Fatigue As A Symptom Of Other Conditions
As mentioned, chronic fatigue can be a symptom of a vast range of other illnesses, including Fibromyalgia and Lyme disease.
Chronic fatigue and Lyme Disease
Fatigue is one of the most common symptoms reported with Lyme disease. While it can show up at any stage, it is frequently a symptom of chronic Lyme, a controversial diagnosis that does not have support from many in the medical community. Because of this bias, many patients with Lyme disease are misdiagnosed with CFS, leading to a worsening of Lyme symptoms because the underlying infection has not been addressed.
The reverse is also possible you can be misdiagnosed with Lyme if you really have CFS. However, this is rare if you are using a high-quality, high-sensitivity blood test from a reputable lab. If youre experiencing chronic fatigue symptoms and think you may have been exposed to Lyme or other bacterial infections through a tick bite, it is crucial that you see a doctor and get tested.
Discuss misdiagnosis here. Focus on CFS as a misdiagnosis of Lyme, but mention Lyme as a misdiagnosis of CFS. Just frame it as its important to get a quality blood test from a reputable lab in order to confirm your Lyme diagnosis.
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Chronic Lyme Disease Symptom Severity
In LDos chronic Lyme disease survey, over 75% of patients reported at least one symptom as severe or very severe and 63% reported two or more such symptoms. Find out more about LDo peer-reviewed published surveys. The chart below shows the severity of ten common chronic Lyme symptoms.
The survey also found that patients with chronic Lyme disease have high disability and unemployment rates. Over 40% of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% report that they have received disability at some point in their illness.
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.
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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. Severe headache, arthritis, arthralgias, and fatigue at presentation predicted persistent symptoms in a retrospectively examined cohort of 215 patients. 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. 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.
How Lyme Disease And Chronic Fatigue Syndrome Are Different
Like mentioned above, Lyme disease is a bacterium. Specifically, and most commonly, Borrelia burgdorferi. Lyme disease requires antibiotic treatment, or specific herbal treatment, to combat the bacteria and heal the body from the infection. While there are treatments for Lyme disease, living with the disease and its symptoms can be very overwhelming.
Lyme disease is most often passed from the bite of a tick but there are other ways its passed to people, including from mother to child while in the womb.
Chronic fatigue syndrome on the other hand is thought to either originate from a virus or possibly stress. Not a lot is known about chronic fatigue syndrome or in how its triggered in the body. There is currently no known cure for chronic fatigue syndrome, only management of the symptoms.
Both Lyme disease and chronic fatigue syndrome can be debilitating diseases and can affect the patient greatly in their day-to-day lives. Its important to have a good support system if you have either disease, including doctors who understand what there is to know about each disease so that you have the best chance of a quality life despite the disease you may be diagnosed with.
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