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.
Why Is Chronic Lyme Disease Chronic
Several factors may account for persistent symptoms. These include low grade persistent infection which either causes damage directly or indirectly through the inflammatory and toxic effects of an activated immune response, permanent damage as may occur in brain injured patients, or a Lyme-triggered autoimmune reaction.
The post-infectious inflammatory hypothesis also is supported by several lines of evidence. For example, patients with Lyme arthritis who carry the HLA-DR4 or DR2 allele are more vulnerable to developing a chronic antibiotic-resistant arthritis. Indirect evidence exists to support molecular mimicry as at least one possible explanation for persistent symptoms. For example, the flagellin protein can generate antibodies that cross-react with myelin basic protein, thereby contributing to axonal dysfunction. Finally, remnants of pieces of the spirochete may result in a persistent activation of the immune system, causing the production of interleukin-6, tumor necrosis factor, and nitric oxide. These cytokines produce fatigue and malaise, two of the more prominent symptoms experienced by patients with chronic Lyme disease.
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The Chronic Lyme Disease Controversy
Chronic Lyme disease is a poorly defined term that describes the attribution of various atypical syndromes to protracted Borrelia burgdorferi infection. These syndromes are atypical for Lyme disease in their lack of the objective clinical abnormalities that are well-recognized in Lyme disease and, in many cases, the absence of serologic evidence of Lyme disease as well as the absence of plausible exposure to the infection. The syndromes usually diagnosed as CLD include chronic pain, fatigue, neurocognitive, and behavioral symptoms, as well as various alternative medical diagnosesmost commonly neurologic and rheumatologic diseases. Perhaps the most recognized and contentious facet of this debate is whether it is effective, appropriate, or even acceptable to treat patients with protracted antibiotic courses based on a clinical diagnosis of CLD.
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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.
Central Nervous System Involvement
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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Biological Explanations For Chronic Lyme Disease
Several arguments have been made to support the biological plausibility of CLD and to justify its treatment with lengthy courses of antibiotics. One is that B burgdorferilocalizes intracellularly in the infected host, and that the antibiotics typically chosen to treat it do not penetrate cells effectively. Aside from the fact that B burgdorferi predominantly occupies the extracellular matrix, the antibiotics currently recommended to treat Lyme disease are well-established to treat a variety of intracellular infections. For example, doxycycline and azithromycin are first-line drugs for the treatment of Mycoplasma, Chlamydia, and Legionella, and doxycycline is the drug of choice for Rickettsia and related species. Ceftriaxone is effective against Salmonella and Neisseria, both of which are predominantly intracellular amoxicillin is effective against Listeria.
Another commonly voiced argument is that B burgdorferi assumes a round morphology, variously described as cyst forms,spheroplasts,L-forms, and round bodies. These variants are said to be resistant to antibiotic treatment and require alternative antibiotics and dosing strategies. On close review of the literature there is little evidence that these variants arise in vivo in humans, let alone that they are associated with CLD-like symptom complexes or that they require treatment.
Treating The Cause Of Fatigue
There can be multiple causes of fatigue associated with Lyme disease and other tick-borne infections. The key is to identify what system or dysfunction that is contributing to fatigue and treat it with effective therapies. When this happens, your energy can improve and you can start to enjoy a higher quality of life again.
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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.
Solid Basis For A Diagnostic Blood Test
Theres been a great deal of controversy and confusion surrounding ME/CFS even whether it is an actual disease, said Davis. Our findings show clearly that its an inflammatory disease and provide a solid basis for a diagnostic blood test.
any, but not all, ME/CFS patients experience flulike symptoms common in inflammation-driven diseases, Montoya said. But because its symptoms are so diffuse sometimes manifesting as heart problems, sometimes as mental impairment nicknamed brain fog, other times as indigestion, diarrhea, constipation, muscle pain, tender lymph nodes and so forth it often goes undiagnosed, even among patients whove visited a half-dozen or more different specialists in an effort to determine whats wrong with them.
I have seen the horrors of this disease, multiplied by hundreds of patients, he said. Its been observed and talked about for 35 years now, sometimes with the onus of being described as a psychological condition. But chronic fatigue syndrome is by no means a figment of the imagination. This is real.
Antivirals, anti-inflammatories and immune-modulating drugs have led to symptomatic improvement in some cases, Montoya said. But no single pathogenic agent that can be fingered as the ultimate ME/CFS trigger has yet been isolated, while previous efforts to identify immunological abnormalities behind the disease have met with conflicting and confusing results.
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So What Stresses Cells
The factors that stress or threaten cells are intimately tied to the fact that we must interact with the surrounding environment to survive. The nutrients, water, and oxygen that cells need to thrive must come from outside the body. This mandatory interaction with the outside environment poses a variety of different risks to cells of the body.
All totaled, there are five categories of factors that can stress cells of the body and lead to chronic illness.
Chronic Lyme Disease May Be A Misdiagnosis Of Chronic Fatigue Syndrome
A tick bite can cause treatable Lyme disease, while long-term symptoms may be due to chronic fatigue syndrome
Most people who think they have a long-lasting form of Lyme disease, triggered by a tick bite, may really have chronic fatigue syndrome, a panel of UK infectious disease experts said today.
Some people who mistakenly believe they have Lyme disease are endangering their health by taking long courses of antibiotics, leading to other infections such as sepsis, the doctors warned.
Lyme disease is a potentially serious infection that first came to attention in the 1970s, after an outbreak of cases in New England. It is caused by bacteria, passed on by bites from ticks, and often triggers a circular red rash initially.
Untreated Lyme disease can lead to a range of health problems, including joint pain, and heart damage. But if diagnosed in time, the infection can be quashed with a short course of antibiotics.
However, some people who have persistent symptoms believe they have a long-term infection, known as chronic Lyme disease, which needs treating with long courses of antibiotics or other alternative therapies such as supplements. This idea has spread from the US to the UK and some other countries.
CFS, also sometimes known as myalgic encephalomyelitis, is itself a controversial condition: some think it involves immune system problems, perhaps triggered by an infection, while others believe psychological factors may contribute.
More on these topics:
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Can Chronic Fatigue Be Transmitted Through Tick Bites
To be clear, chronic fatigue syndrome is a diagnosis based on exclusion. And what qualifies as a positive diagnosis has changed a lot over the past few years. To get a diagnosis of CFS, all the blood markers run by your doctor need to fall with normal ranges.
But how likely was it that your doctor tested you for Lyme disease?
And if he/she did, the way you were tested was likely via the inaccurate testing methods I described. One small study of 210 patients with a positive chronic fatigue diagnosis found that 209 of them were thought to have been exposed to Borrelia. And when these same patients were treated with antibiotics 62% had a statistically significant improvement in fatigue symptoms.
Other studies have also shown there to be a significant correlation between Lyme and chronic fatigue syndrome. Though researchers are unsure if CFS develops as a result of Lyme disease or if Lyme disease actually is CFS.
But before you go get tested for Lyme disease, know that there is also research that suggests its not at all connected to chronic fatigue syndrome. Some studies have shown the proteins found in the cerebrospinal fluid of those with Lyme disease to be completely different than those with chronic fatigue syndrome. If Lyme caused chronic fatigue syndrome, you would expect to find similar CSF proteins in both populations.
Now, I want to hear from you!
How has Lyme disease affected your fatigue levels?
How did you get tested for Lyme disease?
Theres More To The Mystery Of Lyme Disease
Just when you thought you had a handle on diagnosing Lyme, Im going to complicate things once again. Enter co-infections.
When a tick bites you, she may be carrying more than just the Borrelia bacteria. Fun fact only female ticks will spread Lyme disease and other co-infections.
Co-infections are other bacterial strains that can be transferred from tick to you through a bite. If you have a co-infection, treating Borrelia is not enough. Youll also have to identify and treat the co-infections. Some of the more common co-infections include:
- Babesia is a parasite that closely resembles malaria.
- Symptoms of babesiosis are similar to those of Lyme disease but babesiosis more often starts with a high fever and chills. As the infection progresses, patients may develop fatigue, headache, drenching sweats, muscle aches, chest pain, hip pain and shortness of breath.
- Sounds a lot like chronic fatigue doesnt it?
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Chronic Fatigue Syndrome In Patients With Lyme Borreliosis
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What Is Chronic Fatigue
Chronic fatigue is often used as a shorthand to refer to Chronic Fatigue Syndrome, or myalgic encephalomyelitis . Some care providers have also proposed the term systemic exertional intolerance disease, or SEID. This article will use the term Chronic Fatigue Syndrome to refer to this specific medical diagnosis and chronic fatigue to refer to chronic symptoms of fatigue that are exacerbated or caused by unknown/other conditions.
CFS is a serious, long-term illness that affects several body systems and currently has no cure. According to the Centers for Disease Control and Prevention , CFS affects approximately 836,000 to 2.5 million Americans but notably, most have not been diagnosed. More women than men are diagnosed with CFS, and the majority of cases are in young and middle-aged adults.
The Mayo Clinic defines ME/CFS as extreme fatigue that lasts for at least six months and that cant be fully explained by an underlying medical condition. According to this definition, fatigue symptoms worsen with physical or mental activity, but do not improve with rest.
Those with ME/CFS often complain of:
- Sleep that isnt restful
- Problems with memory, focus and concentration
- Dizziness when getting up from sitting or lying down
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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 detectB burgdorferi is hampered by current technology and an incomplete scientific understanding of B burgdorferi, and that conventional diagnostic testing misses patients with CLD., 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. 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.
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. Independent investigations, however, have repudiated the validity of these tests.
How To Accurately Diagnose Lyme Disease
Ok, by this point in the post, I hope youre far more cautious about conventional testing for Lyme. Just because your family doctor tells you Lyme antibodies were not found in your blood, that does not mean you dont have Lyme disease.
Now, Im going to complicate testing for Lyme disease even more.
Those antibodies that show up in your blood, they can last for a number of years. Meaning that you could have been infected with Lyme disease at some point in time but your immune system warded off the infection. But your immune system is still producing antibodies which is why your test comes back positive. This could lead to an intense treatment protocol that may not even be necessary.
A better way of testing for Lyme disease is through something called an EliSpot. EliSpot testing measures T-lymphocytes. T-lymphocytes are a subtype of white blood cells that play a central role in cell-mediated immunity. Cell-mediated immunity does not rely on antibodies to defend your body from invaders. Instead, lymphocytes that are unique to an invader are used for defense.
As you may have surmised, there are specific T-lymphocytes that your body uses for fighting the Borrelia bacteria .
CD57+ cells are helpful to be run as you work your way through a treatment protocol. If your treatment is working, youll start to see an increase in CD57+ cells. This is one of the first markers you can use to determine if treatment is working or not.
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