LYMEPOLICYWONK: Yes, Virginia, there is a Santa Claus: Virginia Lyme Task Force Findings Released
There is a lot to like about the Virginia Governor’s Task Force on Lyme Disease findings, which were unanimously adopted on June 30th after a number of public hearings. The report totals 19 pages and it is remarkably balanced. Congratulations to all involved! I want to share with you what I like about the report by highlighting key points from the findings on Diagnosis, Treatment, Public Education and Prevention, and Children.
I have excerpted the most important components of the report in my opinion and have left the section titles and paragraph numbers intact for those wanting to follow along with the full report, which you can download at the bottom of this post.
[W]e make the following specific findings and recommendations based on the testimony that we received from our hearings:
Diagnosis
1. As acknowledged by the CDC, Lyme disease and many related tick-borne illnesses cannot be adequately diagnosed by serology alone in many cases.
2. There is no serological test that can “rule out” Lyme disease.
3. Clinical diagnosis that may be supported by serology remains the proper method for the diagnosis of Lyme and related illnesses.
4. Clinical diagnosis is not limited to the observation of an EM rash. A significant proportion of patients with Lyme disease may never develop or observe such a rash. Moreover, the EM rash can manifest in non-traditional patterns. The medical community needs a more comprehensive set of visual illustrations so that non-traditional patterns may be properly recognized.
7. The testimony that came before the Task Force relayed the highly questionable nature of the ELISA test for early localized disease. We encourage the use of clinical judgment at all stages due to the significant limitations of current serology.
8. We recommend that the VDH reporting form include the disclaimer “The CDC case definition is designed for surveillance purposes only. Clinical judgment should be exercised in assessing patients for Lyme disease as meeting the surveillance case definition is not required for the diagnosis of Lyme disease.”
9. Since ticks often carry multiple pathogens and we received testimony that many Virginians have multiple tick-borne illnesses that may require comprehensive analysis and treatment, the medical community should be educated on the presence of co-infections.
10. Great caution should be taken whenever a black-legged tick is attached and especially if it is engorged. Patient reports about the length of time of attachment can be unreliable as some patients may not have observed the exact moment of attachment. Medical providers should be at their liberty to treat Lyme disease prophylactically in such cases because of the high risk of disease. (Note that single-dose prophylaxis may lower the sensitivity of subsequent serology, as stated by the CDC.) Moreover, it is clear that early treatment is very important to prevent many serious complications of Lyme disease.
Treatment
1. There is no serological test that can tell a medical provider when a patient has been cured of Lyme disease.
2. A typical criterion that a patient is well is when the symptoms have resolved and the patient feels better.
3. There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.
5. Expert testimony regarding effectiveness of long-term antibiotics conflicted. We encourage additional studies to evaluate the effectiveness of long-term antibiotics as treatment for Lyme disease.
6. The Department of Health Professions should inform its licensees that the department does not target clinicians for disciplinary action by virtue of their antibiotic choice of management of Lyme disease.
Public Education and Prevention
1. It is a public health goal of a high magnitude to ensure that the general public and medical community become fully aware of the risk of exposure to Lyme and related illnesses and the severe medical consequences that can arise when this disease is not promptly diagnosed and treated. Developing an appropriate sense of public urgency is the greatest single need in the efforts to prevent and treat Lyme disease.
Children
1. One expert testified concerning a potential for in utero transmission of Lyme disease. The CDC has proclaimed on its website, “Untreated, Lyme disease can be dangerous to your unborn child.”1 VDH should include information for pregnant women in the educational materials that it provides to the general public and to healthcare providers who care for pregnant women.
6. Experts testified that students afflicted with this disease often fall significantly behind in school because of the problems that they face not the least of which is cognitive difficulties. Current educational accommodations are often inadequate. Consideration should be given to appropriate and sensitive educational modifications for students with late stage Lyme that help maximize their educational progress and that emphasize the fact that late stage Lyme disease routinely has waxing and waning symptoms not typical in most chronic medical conditions and that may require novel and timely accommodations and interventions.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is CALDA’s Chief Executive Officer. Contact her at lbjohnson@lymedisease.org.
YEA!
Well done blog! Am truly happy to have this report. I am sending a copy to my county's Department of Health (Madison County, NY) and the local media.
This is great! Thank you Lord!
More of this to come we must not suffer in silence……I agree with sending it to the local media and county Dept of Health. We are told Lyme does not exist in this state(ID) LOL!
Fantastic news! Does anyone know who we can send this report to within our own state to develop a task force and get the ball rolling? I'm in Maryland and we have a huge tick problem right now but doctors (and the public at large) are unaware and providing inadequate treatment. I want to do something to further this movement.
Does anyone know exactly where the reference inf the articel found under Diagnosis, numbers 1 – 3: "as acknowledged by the CDC", "tick-borne illnesses cannot be adequately diagnosed by serology alone", ""no serological test that can “rule out” Lyme disease . . "" can be found?? That is not how I read the CDC description. I would greatly appreciate knowing where to find this reference; I want to send it to my insurance LOL!
TASK FORCE: Everyone afflicted w/ Lyme and associated diseases should submit this to their Department of Public Health and Human Services (DPHHS), Public Health Officers, Community Health Centers, Mental Health Centers, University Medical Centers, Health Care Providers, Disability Rights Protection Agencies, Public Schools, Day Cares, Community and National Newspapers, National (TV) Stations, Public Broadcast Stations, legislators, and other. . .
This is HUGE! This could help nudge other states to do the same!
It is about time some good news. I have suffered since 1999 and now in Oklahoma. I have written our state and county medical societies, all to no avail. I am sending a copy in hopes these assholes will listen but not optimistic about it.
I have lyme and my 11 year old son was recently diagnosed — I know I gave it to him, I know I did. Information is POWER!
I am so glad that someone finally got it as close to right as possible. If they can, why can't GA even admit we have Lyme Disease. Well written and covered all the major areas. We all need to send a copy to all we know along with politicans, doctors, etc. Thank you!!
Good for Virgina!!! At least one state has now taken the first steps to help those of us that have suffered for years, along with better protecting our children!
This means so much to me…in 2002 I was bitten by a tick in Norfolk where my husband, a naval officer and I were staying for his duty.Upon my homecoming to HERSHEY, PA…..I had a huge bulls eye and was diagnosed with Lyme. Thank you for your research, findings and commitment to help the victims of this debilitating disease.
This is hugh! And I hope it's a model for other states to adopt, and a message to the IDSA! Yeah Virginia.
Somebody should send this to Dan Rodricks at the Baltimore Sun. Not that he'd get it.
Did I miss the link to the entire report?
Sherrill, the link is in pink at the very bottom of the blog posting. Right next to where it says "download attachment."
Yippie!!! This IS good news.
I plan to submit it to the appropriate channels in Canada, where I now reside.
The Canadian policy so far has been complete and utter Denial. The very few doctors courageous enough to treat Lyme where literally hunted out, harassed and punished into submission. Read – giving up their Licenses.
My child was denied treatment and we were told, by one of the Leading Hospital's ID department that the Banding patterns and/or specific bands had no significance!
I am certain that this Report will go some ways here; as an example of how to discuss imp. Health Policy issues.
Thanks so much for giving us this.
Hurray for the GOVERNOR OF VIRGINIA !!! i shall send this to our newly elected GOVERNOR TOM CORBETT IMMEDIATELY. PENNSYLVANIA LEADS THE NATION WITH THE MOST CASES. MY COUNTY OF ELK AND CAMERON county lead the state with the most cases for the past 21 years !! my husband and I have CHRONIC LYME.5707
Where are their findings related to Doctors being allowed to diagnose and treat the disease as a chronic condition?
ANOTHER HURRAY TO OUR GOVERNOR IN VIRGINIA. I CONTRACTED LYME IN 2006; WENT TO A LOCAL INFECTIOUS DISEASE DOCTOR IN LYNCHBURG AND WAS TOLD I DID NOT HAVE LYME. UNFORTUNATELY; I BECAME SO ILL THAT I COULD NOT EVEN GET OUT OF BED FOR TWO YEARS. I ENDED UP CRAWLING TO SAN FRANCISCO TO SEE THE BEST LYME LITERATE DOCTOR IN THE STATES; DR. GINGER SAVELY, AND SHE DID SAVE MY LIFE. IF YOU THINK YOU HAVE LYME DISEASE CONTACT HER NOW IN D.C. AT LYMEDC@GMAIL.COM AND ASK FOR A NEW PATIENT PACKET. I ALSO AM INDEBTED TO OUR LYNCHBURG DELEGATE TO THE HOUSE; SHANNON VALENTIME WHOM I CONTACTED TO DO SOMETHING ABOUT THIS PRESENTED THIS TO THE HOUSE. WRITE TO YOUR WARD DELEGATE. START A GRASSROOTS MOVEMENT OR BETTER STILL GO VISIT THEM AS I DID WITH FRIENDS WHO HAVE EXPERIENCED SIMILAR PROBLEMS. DELEGATE VALENTINE'S DAUGHTER WAS MISDIAGNOSED BY THE SAME DOCTOR THAT I SAW. LYME IS HARD TO GET OVER AND MOST PEOPLE NEVER GET OVER IT!
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We will see if this gets UVA to acknowledge Lyme in an appropriate manner.