Countdown to Lyme Disease Awareness Month, May 2010
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 is 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/financial/political morass in which Lyme patients find themselves.
Collect the complete set of diaries at LymeDiseaseAwareness
Today's diary by: MsGrin
The pathogenesis of lyme neuroborreliosis: from infection to inflammation.
Molecular Medicine 2008 Mar-Apr;14(3-4):205-12
Borrelia burgdorferi (B.b.) enters the host through a tick bite on the skin and may disseminate from there to secondary organs, including the central nervous system. To achieve this, B.b. first has to evade the hostile immune system. In a second step, the borrelia have to reach the central nervous system and cross the blood-brain barrier. Once in the cerebrospinal fluid (CSF), the spirochetes elicit an inflammatory response.
This pathogen now accounts for 91% of vector-borne infections in the United States
Classic Eythema Migrans Rash - many are not this distinct and in only about half of all Lyme cases do patients notice a rash:
Washington Post
Four years ago, after being bitten by a deer tick, Michelle Backes got treated immediately for Lyme disease. She thought she was safe until three months later, when her body started going numb. Then the onetime teacher from Minnesota, turned to a highly controversial therapy: more than a year's worth of antibiotics.
It is, say medical experts, a reckless, unproven and potentially dangerous approach.
But today, Backes, 39, is fit enough to run marathons and is helping lead a grass-roots effort to change the way doctors treat patients like her. "We have to be little renegades," she said.
The guidelines for treating Lyme disease by the Infectious Disease Society of America calls for one dose of antibiotics in a case such as Backes when a rash is present:
A single dose of doxycycline may be offered to adult patients (200 mg dose) ...(if) prophylaxis can be started within 72 h of the time that the tick was removed,
However, the followup study cited in the guidelines was done six weeks after infection. Backes' symptoms did not begin until double that time (three months):
'The single‐dose doxycycline chemoprophylaxis trial had a 6‐week follow‐up period and was not designed to detect long‐term outcomes.'
(For a comprehensive discussion of whether Lyme disease persists after antiobiotic treatment, see Steven Phillips, M.D.'s paper pdf).
A patient is diagnosed with Lyme infection, treated, and symptoms appear (if treatment was at time of infection) or persist (if treatment came at some point after infection). In their guidelines for treating Lyme, the Infectious Disease Society of America, The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America, IDSA says fairly definitively that the disease is eradicated regardless of persistent symptoms. In case you're not going to read Dr. Phillip's discussion above, here's one suggestion indicating that the Lyme spirochete may have an ability to protect itself from harm. In a 2008 article in the Journal of Neuroinflammation, researchers concluded that the Borrelia berdorferi spirochete behaves similarly to its cousin, the spirochete which causes syphilis, changing shape in order to avoid the environmental threat posed by antibiotics:
CONCLUSION: The results indicate that atypical extra- and intracellular pleomorphic and cystic forms of Borrelia burgdorferi and local neuroinflammation occur in the brain in chronic Lyme neuroborreliosis. The persistence of these more resistant spirochete forms, and their intracellular location in neurons and glial cells, may explain the long latent stage and persistence of Borrelia infection. The results also suggest that Borrelia burgdorferi may induce cellular dysfunction and apoptosis. The detection and recognition of atypical, cystic and granular forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form.
In apparent response to Backes' situation, the Post article quotes Dr. Johan Bakkan of St. Luke's Hospital in Deluth saying that many patients are seeking treatment 'without any evidence they were ever infected.'
Bakkan may have been quoted speaking generically of others who are sick - according to the article, Backes had a bullseye rash (erythema migrans seen in photo above) which is considered a clinical manifestation of Lyme infection, and testing is NOT recommended when the rash is present. Accordingly, Bakkan's comments should not have been about Backes' case specifically (to be clear, WaPo does not specify that he was speaking about Backes, but it suggests it by proximity of his quote).
Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans [photo above], 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
While Bakkan IS correct that the two-part test for Lyme (ELISA and Western Blot) has very high error rates (both false positives and false negatives with error rates as high as 45%), but as is stated by the CDC, some patients are given clinical diagnoses for the disease regardless of test results.
"This surveillance case definition was developed for national reporting of Lyme disease: it is not intended to be used in clinical diagnosis."
CDC
This can be confusing so I'll point out that the CDC monitors surveillance criteria and does not claim to keep track of the total number of cases of Lyme disease - the CDC recognizes there are ACTUAL Lyme infections which do not meet the surveillance criteria. The CDC simply cannot keep track of every case because the antibody tests used will not find every infected person and there is no test which can absolutely rule out current Lyme infection (see above in the CDC statement about Lyme diagnosis - it's a diagnosis of symptoms, confirmed by tests when possible, but tests are not always accurate).
"Surveillance for LD is subject to several limitations. Studies
from the early 1990s suggested that LD cases were
underreported by six to 12-fold in some areas where LD is
endemic; the current degree of underreporting for
national data is unknown. In addition, differences in the
demographics of reported cases among states with above- and
below-average incidence suggest variation in diagnostic and
reporting practices among states. Clinicians are reminded that
the LD case definition was developed for surveillance purposes
and might not be appropriate for clinical management
of individual patients (1)."
CDC projections of numbers: Center for Disease Control, 2004. MMWR Weekly May 7, 2004. 53(17) 365-369.Lyme disease US 2001-2002.
2008 is the most recent year for which CDC surveillance statistics are available, indicating 27,000 confirmed cases and an additional 8,000 'probable' cases. Please remember that in order for a confirmed or probable diagnosis to occur, a physician must first recognize signs of the disease, and many, many, many people eventually shown to be infected with Lyme are sick for multiple years before getting a diagnosis. Using conservative numbers, using CDC information, there may have actually been 216,000 new infections of Lyme disease in the U.S. in 2008 (that's using the number of confirmed cases and multiplying it by the mid point number CDC uses to say by what factor Lyme disease reporting is off - 27,000 x 8).
Upshot is, I'm no healthcare professional so I can only list other people's statistics rather than provide my own.
I can tell you that there are a LOT of us out here who go undiagnosed year after year. I can tell you that at least two Kossacks recognized their symptoms in the LymeDiseaseAwareness diaries posted last spring, were tested and found to be seropositive for the disease.
I can tell you that many of us who are sick are VERY sick and that we are told that it's all in our heads. Many of us who are sick have serious neurological symptoms, so that assessment is true to some degree, but WE HAVE AN INFECTION, which even when we do get diagnosed is often resistant to cure by the short course of antibiotics recommended by IDSA. There is substantial, journal-published documentation that this bug is a tricky one to kill.
There is another set of guidelines offered by a professional association called the International Lyme and Associated Diseases Society, ILADS. Those of us who remain sick after a short course of antibiotics want to have the option of more treatment if we remain substantially incapacitated after initial treatment. Some of us have gone for many years without diagnosis and hence without treatment - it seems fair to conjecture that in such cases our infection may be widely disseminated. As the WaPo story suggests, sometimes people get better - get their LIVES back - after a longer course of antibiotics. There may be better ways to diagnose this debilitating disease and ways to more effectively treat it. We're counting on it.
