May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series will be eclectic including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us in learning about this rampant disease and the medical/industrial/political morass in which Lyme patients find themselves.
Today's diary by: MsGrin
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans by the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease. CDC
Your body and mind are in a thick fog. You twitch. Your head spins. Maybe you fall down for no apparent reason from time to time when you're walking. You forget where you are. What you're doing. To whom you're speaking on the phone. Your body aches. Standing for any length of time or carrying things of any weight become near impossibilities. Maybe you develop migraines. Driving is a safety hazard, as your hand-eye coordination can be intermittently out of sync. Figuring out how to respond to someone running a red light is a hazy mystery you remember knowing, but don't remember what you knew or what to do about it. Rest doesn't relieve the fatigue which drags you deeper into the fog. You wake up exhausted wondering what day it is and where did your life go and can you possibly get it back.
But you look fine to anyone not in your skin. Doctors tell you it's all in your head. Your family and friends may believe the doctors. (Note: Some Lyme disease patients do not look fine - some have such intense neurological symptoms they are unable to walk and look more like a patient with advanced M.S.)
And then after doctor after doctor and year after year and thinking maybe you are crazy, someone finally recognizes the classic signs of Lyme disease and runs the tests for it, and at last you have a diagnosis and you're not crazy anymore, and you can get cured, right?
Maybe.
Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans. CDC
On Friday, we heard from Una Spenser about her battles first with getting a diagnosis and now with getting access to treatment as her situation worsens. As with so many Lyme patients, she's had to learn how to navigate the land mines for Lyme Disease patients. This diary will give you a taste of the patient's perspective.
The Personal Is Political
According to the Lyme Guidelines of the Infectious Disease Society of America (IDSA), Lyme is typically difficult to catch and easy to cure, although they acknowledge that with regard to late neurologic Lyme disease "Response to treatment is usually slow and may be incomplete."
Throughout the IDSA guidelines, the recommended antibiotic regimen is a 10-28 day course of antibiotics for the vast series of symptoms found in Lyme disease patients. According to the IDSA FAQ on Lyme:
How is Lyme disease treated?
Treatment usually involves 10-28 days of oral antibiotics and is highly effective.
When Lyme disease is diagnosed and treated quickly, 95 percent of people are cured within a few weeks of treatment.
IDSA FAQs About Lyme Disease
But what if that's not enough, as in Una Spenser's case? What if you don't get well and the tests still show you are positive for Lyme?
The word of a major medical association (and IDSA is among the best respected) is law as far as health insurance companies are concerned. If the IDSA says 3 weeks of abx is all it takes, you can be sure insurance companies will balk at covering anything beyond that. (In this case, 'balk' = deny coverage.)
Also from the FAQ, here's what the IDSA has to say about a patient like Una Spenser who does not get better with a short course of antibiotics:
Can’t Lyme disease sometimes become on ongoing problem?
In rare cases, people who have been diagnosed with Lyme disease and properly treated have lingering symptoms, typically generalized pain, joint pain and fatigue. These symptoms have been interpreted by some to suggest the presence of chronic Borrelia burgdorferi infection.
However, an extensive review of scientifically rigorous studies and papers available to date, has determined that there is no convincing biologic evidence to support a diagnosis of chronic Lyme disease after completion of the recommended treatment.
There is no doubt that patients with persistent symptoms are suffering, but many report non-specific symptoms that also are associated with a number of other medical conditions. To be certain they receive the proper medical care, people who continue to have symptoms that persist after appropriate antibiotic treatment for Lyme disease should talk to their physicians about whether the original diagnosis of Lyme disease was accurate or if they may have a different or new illness.
But some people are receiving long-term therapy for Lyme disease and say it’s helping. Couldn’t this be true?
Long-term therapy for so-called chronic Lyme disease can involve weeks, months and even years of intravenous antibiotics. Although some people may feel better, it doesn’t prove that the antibiotic cured or suppressed infection. Sometimes, the belief that a treatment is helping can be enough to make people feel better. This is called the placebo effect and it is a well-documented medical phenomenon. Antibiotics also have anti-inflammatory effects that may help alleviate certain symptoms. Or, in some cases, patients may have another infectious disease that is responsive to antibiotics.
In more than 20 years there has not been one scientifically valid study published in the peer-reviewed medical literature that proves that the benefit of long-term antibiotic treatment outweighs the risk.
IDSA FAQs About Lyme Disease
Is it 'rare' that "people who have been diagnosed with Lyme disease and properly treated have lingering symptoms, typically generalized pain, joint pain and fatigue"? Not according to the President of the International Lyme and Associate Diseases Society (ILADS):
the chronic form of the disease may be prevalent in up to 62 percent of the (Lyme disease) population in areas where Lyme disease is endemic. CNN
Yet, IDSA guidelines sure look definitive and convincing, don't they? For contesting the authority of the IDSA position, we surely will be reminded that as lowly patients, our experience is only anecdotal and dismissible because our lives and experience are not double-blind studies.
But is it definitive?
Although the persistence of Lyme disease is the cause of much controversy, the scientific literature at this website reveals that Lyme disease is in fact known to persist following antibiotic treatment. LymeInfo.net
At LymeInfo.net you can download a document with summaries of 70 studies showing that Lyme persists beyond a short course of antibiotics. Based on these studies and more, a patient wonders how the IDSA can make such a definitive claim.
Now for a differing perspective from ILADS. ILADS defines itself as "a group of forward-thinking doctors who understand the complexities of Lyme disease and are pioneering a new standard of care to ensure all patients have access to care":
Guidelines of the Infectious Disease Society of America (IDSA) fall short of meeting the needs for diagnosis and treatment of individuals with chronic Lyme disease. The latest IDSA Guidelines (2000) fail to take into account the compelling, peer-reviewed, published evidence confirming persistent, recurrent and refractory Lyme disease and, in fact, deny its existence. ILADS identified the need for new and expanded guidelines for the diagnosis and treatment of Lyme and associated diseases. In 2001, a working party was formed to evaluate current practices and to encourage new standards of care.
The IDSA’s symptomatic approaches to Lyme disease are limited and exclude many individuals with persisting clinical and laboratory evidence of active B. burgdorferi infection. In addition, physicians treating individuals with Lyme and other tick-borne infections recognize the need for new guidelines to better serve the patient population.
Previous guidelines for management of Lyme disease have been published in the New England Journal of Medicine in 1990 by Rahn; in Conn’s Current Therapy in 1997 by Burrascano and in 1998 by Steere; in Burrascano’s Guidelines on the ILADS website (www.ilads.org); and most recently in the Journal of Infectious Diseases by Wormser and colleagues in 2000. The ILADS Guidelines expand on these protocols using the evidence-based approach and Cochrane methodology employed by the IDSA.
Our goal is to present practitioners with practical and defensible guidelines for treating all individuals with Lyme disease including those with persistent, recurrent and relapsing symptoms of B. burgdorferi infection.
ILADS
For those patients for whom it took many years to be diagnosed, the ILADS statement looks entirely reasonable. If patients don't get well on a short course of antibiotics, what's wrong with their doctors (who know the specifics of their health situation) adjusting medications to match their particular manifestations of the disease? IDSA has said the disease is 'complex,' doesn't that suggest it may be hard to treat?
Most patients aren't prepared to discover that they're caught in the crossfire of a war of beliefs about how Lyme disease is diagnosed and treated. The Centers for Disease Control indicates that there were 27,000 new cases of Lyme reported in 2007 (the latest year for which there are statistics on the CDC website), but in other writings, they indicate that those who have been tested may represent only 10% of actual cases of Lyme (still looking for a site).
What are the consequences of patients not being taken seriously? One of the most vexing problems is that thousands of patients complaining of Lyme symptoms go from doctor to doctor to doctor before someone finally recognizes the symptoms and knows to test them for the disease.
Assuming for the moment that the IDSA guidelines are correct about treatment, then delayed treatment means extra suffering for those patients. If one believes the studies which show that delayed treatment may mean a higher likelihood of persistent disease, then delaying diagnosis is truly dangerous for patients, lessening their quality of life and potentially shortening it.
For those patients who continue to be sick after a year or more of treatment, the IDSA guidelines are fairly dismissive, implying that their illness is in their head and their positive test results are somehow erroneously reflecting an earlier time when they were positive for Lyme.
In a future diary, we will discuss the consequences of the IDSA position on both health care access for patients and the impact for treating physicians who go beyond the scope of the IDSA guidelines - the story of the Connecticut Attorney General and his conflict of interest investigation into the IDSA position on Lyme will illustrate how political this disease has become.
Please join us for continuing diaries throughout Lyme Disease Awareness month - we anticipate posting Monday/Wednesday/Friday for the month of May.