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Symptoms Common to Lyme Disease and ME/CFS
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- Last Updated: 11 November 2015 11 November 2015
Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are found in deer ticks.
The most common indicator of infection with Borrelia burgdorferi is a bull's eye rash around the area of a tick bite. These rashes are called erythema chronicum migrans. Rashes can also be less typical in shape. The rash occurs approximately 2-4 weeks following the initial tick bite. However, the rash is absent in at least 25 - 35 percent of people who become infected. Typical treatment for Lyme disease is oral antibiotics (Doxycycline) for approximately 14-21 days.
- Fewer than 50% of patients with Lyme disease recall any rash.
- Fewer than 50% of patients with Lyme disease recall a tick bite.
Due to the large percentage of people that do not present with a rash, Lyme disease can go undetected and become a chronic Lyme infection.
Approximately 4-6 weeks following the tick bite, the first systemic symptoms (other than multiple rashes) occur in some patients, usually in the form of "flu". Patients with chronic Lyme disease most commonly have sore throat, headaches and neck pain, severe fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as “brain fog”.
In addition, infection with Borrelia often results in a low-grade encephalitis (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. Some patients experience Bell’s palsy, which causes the drooping of one side of the face.
After several months, approximately 60% of patients with untreated infection will begin to have intermittent bouts of arthritis, with severe joint pain and swelling. Large joints are most often affected, particularly the knees. Chronic Lyme is a persistent and debilitating disease.
Symptom overlap between ME/CFS and chronic Lyme Disease
The major symptoms of chronic Lyme disease that overlap with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are:
- cognitive dysfunction and mood changes
- central nervous system irritability, including parathesias (numbness, tingling crawling and itching sensations)
- fatigue
- flu-like illness: fevers, malaise, headache, muscle aches
- joint aches (arthralga) and intermittent swelling and pain of one or a few joints.
- sleep disturbance
Due to these similarities, it is very difficult to tell the difference between the two illnesses especially if there's no tick-associated rash.
Diagnosis with the CDC 2-step protocol
The diagnosis of Lyme disease is very complicated due to the interpretation of clinical symptoms and also the lack of reliable diagnostic testing. Similar to ME/CFS, the persistence of unexplainable symptoms for greater than 6 months in the absence of another alternative diagnosis may be indicative of chronic Lyme disease.
In 1994, the Centers for Disease Control & Prevention (CDC) published a two-step protocol for testing the presence of Lyme Disease.
CDC 2-step protocol
- The first step uses an ELISA or IFA test. These tests are designed to be very "sensitive," meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive. If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended. If the ELISA or IFA is positive or indeterminate (sometimes called "equivocal"), a second step should be performed to confirm the results.
- The second step uses a Western blot test. Used appropriately, this test is designed to be "specific," meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons. Sometimes two types of Western blot are performed, IgM and IgG. Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive.
Testing
The CDC does not recommend testing blood by Western blot without first testing it by ELISA or IFA. Doing so increases the potential for false positive results. Such results may lead to patients being treated for Lyme disease when they don't have it and not getting appropriate treatment for the true cause of their illness. For detailed recommendations for test performance and interpretation of serologic tests for Lyme disease, see the CDC Recommendations.
Presently, physicians perform laboratory testing such as the ELISA and Western Blot for testing Lyme disease. Over the last 10 years, the ELISA has been shown to be an unreliable test in many patients with Lyme disease, both in early infection and later disease. This is mostly due to the lack of sensitivity of this test.
Because Western blots separate the proteins of the Borrelia, specific reactions can be visualized and more accurate interpretations of the results made. Over 75% of patients with chronic Lyme disease are negative by ELISA, while positive by Western blot.
If a person suspects Lyme infection, s/he should seek medical attention immediately. Despite the CDC recommended protocol, the Western blot is the most sensitive test and is the best indicator of disease. Therefore, if ELISA testing is negative, patients should request the Western blot test from their physician.
Infectious Disease physicians are the most knowledgeable in treating Lyme disease and should be consulted concerning appropriate blood tests and diagnostic testing results.
One authority writes: “…doctors (infectious disease, internists, family practice, etc.) most often use the Centers for Disease Control (CDC) criteria to define a positive test…To adequately detect and treat chronic Lyme disease, physicians must understand that standard tests will miss the majority of these cases. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients. If one uses an expanded Western blot with revised CDC requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90%, while having a low false positive rate of less than 3%.”
There is a great deal of controversy today concerning the diagnosis of Lyme disease. This controversy surrounds the accuracy of diagnostic tests, interpretation of testing results and treatment plans. Consult your physician, and if necessary an Infectious Disease specialist in Lyme disease.
Reference
Weintraub P. Cure Unknown: Inside the Lyme Disease Epidemic. St. Martin’s Press, 2008. ISBN: 978-0-312-37812-7
Advocacy Actions
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- Last Updated: 23 January 2016 23 January 2016
Illnesses like ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and FM (Fibromyalgia) are not only challenging and disabling, but they have put individuals in the unique situation of having to speak out for their own needs. Advocacy efforts started in the late 1980s when a handful of sick, but very determined individuals started to devise strategies by which to raise awareness about the illnesses and plead for research. Two decades later, there have been improvements, but the "mission" is not yet accomplished. This generation of patients must find ways to continue the efforts of those who laid the groundwork and who had brought advocacy from its infancy to the present day.
The Government Advocacy page on the Solve ME/CFS website provides patients with information about advocacy efforts (especially by Solve ME/CFS) for research, education, and other critical ME/CFS issues.
May 12th—Awareness Day
May 12th (Florence Nightingale's birthday) is designated as International Awareness Day for ME/CFS and FM. The May 12th Awareness Day was initiated by the late Tom Hennessy, the founder of "Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases"— R.E.S.C.I.N.D. It is a time when individuals and groups engage in some type of activity or campaign to help increase awareness about these illnesses. One of the most prevalent activities is writing letters to government officials.
Individuals can describe their personal experiences with these illnesses, as well as emphasize the need for national recognition and increased research funding of ME/CFS and FM. Educating others, communicating the needs of this patient community and/or taking action on other issues goes well beyond what can be achieved in a single day. Responding to various opportunities or situations that may arise throughout the year is a constructive way to make use of one's knowledge and experience of the illness.
Individuals can always write to their express needs or concerns for government help, but it is particularly important to make a special effort to support the international movement. Letters do make a difference as they help to remind federal health officials and government representatives that the needs and rights of this patient population have not been met. A sample letter (below) can be used as a guide.
Write to Congresspersons, representatives and other officials!
Please click this link to view Sample Letter
Write To Congress: Find contact information for your U.S. Senator or Representative
State Senators and Representatives of Massachusetts can be found by cities and towns here.
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is a group comprised of federal representatives, physicians, and patient advocates whose stated mission is to develop public policy on ME/CFS and to coordinate efforts of the government toward research, education, and disability assistance. The committee had operated under the federal Department of Health and Human Services (HHS) but in November 2008, administrative and management support was transferred to the Office on Women's Health (OWH). More information about CFSAC meetings, recommendations and notices can be viewed at: http://www.hhs.gov/advcomcfs/
This website documents the relentless struggles by the late Judy Morris, M.D. against a major private disability insurance carrier and corporate crime in healthcare: http://graham.main.nc.us/~bhammel/INS/judydoc.html
Employee Retirement Income Security Act of 1974—ERISA outline: http://www.harp.org/erisa.htm
CFS/FM and Chiari Malformation Surgery
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- Last Updated: 15 November 2015 15 November 2015
by Ken Casanova
The Massachusetts CFIDS/ME & FM Association Spring 2000 UPDATE
When I first read that several neurosurgeons were performing brain surgery to treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia (FM), I was alarmed. Several doctors and researchers have put forward a theory that in a percentage of patients, ME/CFS and FM are related to chiari malformation—an anatomical condition in which a portion of the brain is squeezed too tightly into the top of the spinal canal or, alternatively, the upper portion of the spinal cord is squeezed into a spinal canal that is too narrow.
These doctors hypothesize that the mechanical pressure exerted against the brain or spinal cord causes fatigue, headaches, and many neurological symptoms. The remedy in patients with this condition is to surgically remove bone in the skull or the spinal column to relieve the pressure on the nerve tissue.
A major article on chiari surgery by reporter Thomas Burton appeared on Nov. 11, 1999 in The Wall Street Journal Europe (WSJE). The article reported that the "complicated and potentially dangerous operation" has already been performed on over 300 FM and ME/CFS patients.
On March 10 of 2000, ABC's 20/20 with Dr. Tim Johnson gave the chiari surgery a positive report as a potentially exciting new treatment for some patients with ME/CFS and FM. He cautioned, however, that the new treatment should be considered "experimental" and "that it is too early to tell how long results will last and which patients might most benefit."
Should FM and ME/CFS patients undergo serious brain surgery? Does sufficient and reliable scientific evidence indicate that chiari malformation causes primary symptoms in a percentage of patients? Does the surgery relieve or remedy a sufficient number of symptoms in a sufficient percentage of patients to justify the risks of surgery? Experts disagree on the percentage of ME/CFS or FM patients who have chiari malformation as well as the effectiveness of the surgery in the relief of symptoms.
Dr. Michael J. Rosner, a primary proponent of the theory and the surgeon who has performed most of the surgeries to date—an estimated 250, according to the WSJE article—compared the effect of the surgical treatment to "the story of the discovery of insulin." Dr. Rosner claims, "Fibromyalgia and chronic fatigue syndrome may be many diseases, but clearly there is a big chunk of them who may be surgical candidates" (CFIDS Chronicle, May/June, 1999).
Dr. Sam Banner, a physician and ME/CFS patient who was operated on by Dr. Rosner, reported that he experienced a very significant relief of ME/CFS symptoms. Now Dr. Banner refers ME/CFS and FM patients to Dr. Rosner. Out of 300 of Dr. Banner's referrals, Dr. Rosner has operated on 90 (a rate of 30% of referrals). Dr. Banner claims "50 to 80% of CFIDS/FM patients have malformations." (WSJE)
Other medical professionals demonstrate less confidence in the treatment. Thirteen doctors who had examined many of the patients Dr. Banner referred to Dr. Rosner expressed concern that an "inordinately high" number of operations were being performed and that many of the patients' MRI results had been normal. (WSJE) Dr. Daniel Clauw, a well-known FM researcher, contends that only "an extremely low percentage" of ME/CFS and FM cases would involve a chiari malformation. In a magnetic resonance study, he found no difference in the results between the patient and control groups. (WSJE)
A letter, "Is chiari malformation associated with increased levels of substance P and clinical symptoms in persons with fibromyalgia?" from Bradley and Alarcon in the Journal of Arthritis and Rheumatism (v. 42, no. 12, Dec. 1999) states that in their ongoing study, 20% of FM patients had chiari malformation, as opposed to 6% of controls. However, the authors also found "that there was no difference in ratings of pain or fatigue or in CSF [cerebrospinal fluid] substance P levels between FM patients with chiari and those without chiari." Hence, according to these preliminary findings, chiari might not be a cause of generalized pain and fatigue in FM patients.
Dr. Rosner asserts that standard MRI testing can overlook chiari malformation and that only specialized scanning is diagnostic. (In other words, studies not using the specialized protocol would not detect the malformation). However, he adds that even the correct MRI scanning may provide only vague results, and that neurological testing and evaluation of symptoms is also necessary. (An important article on chiari malformation in the May 1999 Journal of Neurosurgery, is helpful in clarifying and distinguishing the primary symptoms of ME/CFS and FM and chiari malformation. The article also contains important information on diagnosis by MRI.)
According to Dr. Rosner, "The real diagnostic clue [to chiari malformation] is anything that signals neurological impairment—abnormal reflexes, tingling in both arms or both legs, shooting pain, urinary frequency, inability to stand on one foot... dropping things out of the hands." He goes as far as to say that neurally mediated hypotension (NMH) may prove to be "a good objective marker." (CFIDS Chronicle)
The problem here is that these neurological symptoms are quite common in ME/CFS and FM. So they may or may not be caused by chiari or narrowing of the spinal canal. For instance, neurological symptoms may be caused by inflammation of tissue in other parts of the brain. Dr. Rosner states that swelling of nerve tissue against spinal and skull bones may be one of the reasons for the symptoms. [Might relief of the inflammation by medication be a less invasive means of reducing tissue pressure?]
What about the effectiveness of the surgery in substantially curing the illnesses or at least relieving major symptoms? No scientific studies yet describe the effect of the surgery. Right now, reports are only anecdotal. "Several of Dr. Rosner's patients say they were disabled and that they dramatically improved afterward." However, four patients sued Dr. Banner and Dr. Rosner claiming the surgery was unnecessary or their symptoms had worsened. A number of other doctors who had seen patients before and after surgery claimed the surgery "was unnecessary and unhelpful."(WSJE).
An article, "N.C. Doctor's Treatment Debated," by Karen Garloch in The Charlotte Observer (2/27/2000) quoted Dr. Charles Lapp, a well known ME/CFS and FM clinician, "There is great potential for Rosner's approach, but he too called for controlled studies." Lapp said he has seen several patients after Rosner operated on them. "He claims great success, and I see them later and don't see much success," Lapp said. One patient, for example, improved initially but, six weeks later, Lapp said the patient called him to say that his fibromyalgia pain was back and he couldn't get out of bed.
Rae Gleason, director of the National Fibromyalgia Research Association, in a very positive statement said, "The treatment is not 100%... Each person gets back a different kind of quality... the most dramatic improvement is that headaches are gone... fatigue is greatly decreased." (CFIDS Chronicle). The CFIDS Association of America will be funding a scientific study by recognized FM researchers on the association of chiari and ME/CFS and FM.
What can we conclude? Nothing definitive—either a "big chunk" or "an extremely low percentage" of ME/CFS or FM patients may be surgical candidates. Some patients say they have been dramatically helped, while others are suing because they are the same or worse. It is simply too early to tell what percentage of ME/CFS or FM patients have symptoms caused by chiari and whether or not the symptoms are substantially relieved by the surgery. Further scientific research could answer these questions.
Until we get more answers to these questions, we should be very cautious about a rush to surgery. Brain surgery involves the drilling of skull and spinal bone. It invades an area that controls all of the life-and-death autonomic functions such as breathing and heartbeat. This is serious surgery. Let's be active and reasonably experimental in seeking treatments that have shown some effectiveness and are not harmful.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.