The body of each of our diaries will begin with this declaration:
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 all month in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
We ask that we all treat each other with kindness as we explore what can be a difficult subject. We hope to provide an education, as well as to learn ourselves, and to engage in a compassionate dialog about this complex disease and the complex socio-medical environment in which we all live.
Here is some basic information about Lyme Disease:
Lyme Disease: Adult Symptoms
* Lyme is fastest growing vector-borne disease
* 85% do not recall tick bite
* Less than 70% of people develop a rash
* Treatment should begin without testing if rash is present
* Lab tests may be negative in the first 4-6 weeks
* Flu-like illness (fever, chills, sweats, muscles aches, fatigue, nausea and
* Rash (10% have EM rash)
* Bell’s palsy
* Stiff neck
* Light or sound sensitivity
* Cognitive impairment
* Sleep disturbance
* Depression, anxiety, or mood swings
* Abdominal pain, nausea, diarrhea
* Chest pain, palpitations
* Shortness of breath
* Tingling, burning or shooting pains
2009 is the most recent year for CDC's statististics about the number of infections in the U.S. The confirmed number of cases is slightly under 30,000, so this means that that number of people have had tests which meet the CDC criteria to demonstrate proof. Additionally, the chart available at this link indicates that there are nearly another 10,000 who have been tested whom they strongly suspect have confirmed Lyme based on test results. Say what? They've been tested and you cannot confirm if they have it or not? Yeah. Welcome to Lyme disease - there are still a lot of unanswered questions here about what the disease is, how to tell if a person has it, and how to cure it.
CDC: 'Lyme disease is the most common vector-borne disease in the United States'
To make matters more complicated, CDC has acknowledged that the number of confirmed cases from individuals who have been tested for Lyme likely under-represents the number of actual infections:
CDC: '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.'
If you click through on that last link, you'll see that quote about the 1990s is from 2002. In 2011 we have no additional indication from CDC that we have a better handle on how many infections are occuring annually in the U.S. Given the numbers provided by CDC and their own instructions about under-reporting, there could well be over 200,000 Lyme infections annually in the United States. No one claims to know.
Does this information evoke questions? Perhaps you've learned something already from it. Is your physician aware of the signs of Lyme, as it can present like myriad other ailments? As common as this infection has become, the fact remains that many patients are sick for multiple years before they find a physician who recognizes their symptoms as signs of Lyme and tests them for it. While there is general agreement that antibiotic use at the time of infection can be extremely effective, it may be considerably more difficult to treat an infected patient whose spirochetes have been able to disseminate themselves throughout the body and brain.
Here's another caution from CDC about use of their data in making Lyme diagnosis:
CDC: 'Clinicians are reminded that the LD case definition was developed for surveillance purposes and might not be appropriate for clinical management of individual patients.'
What happens if you have Lyme for a long time before you get treatment? What do you do if your doctor throws that attached tick into the trash and says, "You can't have Lyme, we don't have that here."? What if you take antibiotics and you still have symptoms? Then, what do you do if your doctor tells you that since you've had a course of antibiotics you can't have symptoms anymore, so whatever you are experiencing must be all in your head."? How do you find a doctor who understands that there are several co-infections likely with Lyme Disease? Do you need an infectious disease doc, a rheumatologist, a cardiologist or a neurologist? Are ticks the only way to contract Lyme? Why do his Lyme Disease symptoms look different from hers? How can you support a friend or family member with Lyme?
Though some aspects of diagnosis and treatment of Lyme Disease have been shrouded in controversy, one thing almost everyone can agree on is that the subject is complex. During the month of May, we'll try to cover a lot of ground and offer a range of diaries from the scientific to the personal. We hope that the DailyKos community will find them edifying.
Find and follow us here: Lyme Disease Awareness.
Comments are closed on this story.