Hot Off the Press

 

Back to School: The ABCs of Lyme and other Tick-borne Infections

 
kids-going-back-to-schoolOn August 14, 2014, ILADS released this helpful information for parents. As families transition from summer activities to Back-to-School preparations, the International Lyme and Associated Diseases Society (ILADS) urges parent to think about where their children have been this summer; where will they play during recess at school; and especially, where will student athletes practice or compete during sports seasons. Learning the simple ABCs of tick bites will help parents keep students safe and healthy.
 
Daniel Cameron, MD, MPH, the current president of ILADS, suggests parents watch their children who are returning from a summer away at camp for signs of possible lyme infection. “Many people never see a tick as it’s biting; and, many people won’t exhibit what has become known as the bull’s eye rash,” said Dr. Cameron. “However, there are other signs parents should look for including fatigue, headaches, poor concentration and joint pain,” said Dr. Cameron.
 
Understanding ticks and the infections they transmit is still a work in progress, Dr. Cameron noted. Until recently, most health care providers treated a tick bite or the bull’s eye rash, with one of two regimens: one dose of 200 mg of doxycycline; or, three to four weeks of treatment with 100 mg of doxycycline twice a day, respectively. On August 1, 2014, ILADS released updated guidelines suggesting a change in treatment protocols. “Lyme disease is a complex illness,” noted the guideline authors. “Patients may experience both acute and persistent manifestations.” And those persistent manifestations of the disease, said Dr. Cameron, are poorly understood and often labeled as having developed from something other than a tick bite.
 
Students can get bitten in their own backyards. However parents should instruct their children to stay out of tall grass while walking to and from school; or, while playing outside during recess. Parents and coaches should also be mindful of the areas around playing fields used for practice and games. Parents of students who run cross-country should talk about whether or not to use an insect repellant containing DEET, which is effective against mosquitoes and may repel ticks. Parents could also have uniforms treated with permethrin. (See: http://npic.orst.edu/factsheets/Permtech.pdf)
 
Here are the ABCs of lyme and tick-borne diseases from ILADS:
A- Awareness
While people associate ticks with wooded areas, the fact is many people get bitten in their own backyards. Ticks can be transmitted to people by pet dogs and cats. Horses have been known to transfer ticks to people. Being aware of your environment and taking precautions can reduce one’s exposure. The University of Rhode Island hosts the TickEncounter Resource Center which provides lots of information.
 
B- Bites
The National Institute of Allergy and Infectious Diseases maintains a tick must be attached for 36-hours in order to transmit lyme; newer research challenges that claim. Consequently, checking for ticks is the best defense available right now. Don’t allow your students to merely shower after being outside. Ticks can remain attached even after a cleansing. Don’t forget to look along the hairline; examine your child’s back— a place they can’t see. Also, look behind the knees. If you find a tick, remove it carefully and immediately. ILADS has an instructional video.
 
C- Challenges
While some cases of lyme disease resolve with routine treatment, many patients suffer long term consequences. Ticks can transmit more than lyme disease. Diagnosing associated illnesses from tick bites takes a skilled practitioner. Finding what many patients call a Lyme Literate health care provider is the key to getting better. ILADS provides patient information and can assist with finding the appropriate physician in a given area. There are also a number of lyme patient support groups on the national, state and local levels. Those organizations also help patients find physicians. Click here for http://www.lymenet.org/SupportGroups/UnitedStates/

For more information:
ILADS
http://www.ilads.org
 
 

Regulation of Laboratory Developed Tests

fda-APPROVED-LAB-copy-300x200On July 31, 2014, the FDA announced it would move forward with regulations to restrict cutting edge Laboratory Developed Tests (LDTs), which have not required FDA approval before because they are not marketed to consumers. The new regulations would change that. LDTs include the Lyme tests manufactured by IGeneX and Advanced Laboratory Services that many patients rely on for accurate diagnosis.

See more on the Lyme Disease Organization website, the FDA website or read the United States Senate letter here.

The public comment period for the proposed regulation will open in October. Will give you more details when I have them so that, if you wish, you can post your feedback about this.
 
 
 

Pay It Forward

Adriene Greenfield does the ice bucket challenge for Karen
 

 
  
 
  

Sequel to Under Our Skin released today

EmergenceUnder Our Skin 2 Emergence
In this dramatic follow-up to the widely acclaimed UNDER OUR SKIN, EMERGENCE takes the viewer on a journey from horror to hope. We witness the emerging epidemic of Lyme disease as infection and education spread globally. We watch as the truth emerges about the disease’s persistence and reach, about promising new research, and about medical collusion and conflicts of interest that continue to impede progress. We revisit the characters from UNDER OUR SKIN as they emerge into better health, reclaiming their lives and dignity, and offering hope to the legions now suffering. As Lyme disease explodes, EMERGENCE shines a probing light on the issue and becomes a beacon in the dark. 
   
  
  

New Standard of Care Guidelines for Treating Lyme and Other Tick-borne Illnesses

Diane_Dewar_bookClick here to read the guidelines in full.

Bethesda, Maryland, July 31, 2014— How doctors treat patients with suspected Lyme infections needs to change so as to avoid potential long term illness and suffering. To that end, the International Lyme and Associated Diseases Society (ILADS) today released updated guidelines for the treatment of Lyme and other tick borne infections which call on physicians to provide evidence-based, patient-centered care for those with Lyme disease.

Published in the August 2014 edition of the journal Expert Review of Anti-infective Therapy, the new guidelines, titled: “Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease,” say current antibiotic protocols used by many physicians to prevent or treat Lyme disease are inadequate, leading to an increased risk of Lyme disease developing into a chronic illness.

“Chronic manifestations of Lyme disease can continue long after other markers of the disease, such as the erythema migrans rash, have resolved,” said Daniel Cameron, M.D., M.P.H., and lead author. “Understanding this reality underlies the recommendation for careful follow-up to determine which individuals with Lyme disease could benefit from additional antibiotic therapy.”

ILADS is the first organization to issue guidelines on Lyme disease which comply with the standards set by the Institute of Medicine for developing trustworthy protocols. The document provides a rigorous review of the pertinent medical literature and contains recommendations for Lyme disease treatment based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This review format is used by other well-respected medical organizations including the Cochrane Collaboration and the World Health Organization.

ILADS’ GRADE-based analyses discovered research studies guiding current treatment protocols were of very low quality; and, the regimens based on these randomized controlled trials often failed. “For this reason, we moved away from designating a fixed duration for antibiotic therapy for tick borne illnesses and instead encourage clinicians to tailor therapy based on the patient’s response to treatment,” noted Dr. Cameron.

“We not only recommend clinicians perform a deliberate and individualized assessment of the potential risks and benefits of various treatment options before making their initial selection,” said guidelines coauthor Elizabeth Maloney, M.D., “we also recommend careful follow-up. Monitoring a patient allows clinicians to adjust therapy as circumstances evolve. This more selective approach should reduce the risk of inadequate treatment giving rise to a chronic illness,” added Dr. Maloney.

The guidelines encourage shared medical decision making and taking patient values into consideration. Lorraine Johnson, J.D., MBA, a coauthor and Executive Director of LymeDisease.org, noted, “A lot of the treatment decisions in Lyme disease depend on trade-offs. How sick is the patient? How invasive is the treatment? What is valued by the patient? Patients need to understand the risks and benefits of treatment options to make informed medical choices,” added Ms. Johnson. “These guidelines provide that information.”

ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme and associated diseases.

 

Lyme Bill HR 4701 Passed by the Energy and Commerce Committee

legal2Lyme bill, HR 4701, passed with voice vote out of the Energy & Commerce Committee, on July 30, 2014.
The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress including “a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections…. ”

“The bill provides recognition that research is needed for Lyme disease and all tick-borne diseases and provides for a structure where the ultimate stakeholders, Lyme patients, will finally have a voice at the table in a transparent setting” said Lyme Disease Association President Pat Smith. “Additionally, the inclusion of ‘chronic or persistent infection’ finally allows that to be more fully examined as part of the federal research agenda.” Read more here or here.

At Least it Isn’t Cancer

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A very interesting article about the confusion people have when one says they have late-stage Lyme disease vs a medically approved disease. At Least it isn’t Cancer

Good News for Pennsylvania

Lyme Disease Bill Passes in Pennsylvania
AR-140629525.jpg&maxh=400&maxw=667This was signed by Governor Corbett on June 29, 2014. Although there is no provision as of yet protecting doctors who are prescribing long-term antibiotics, it is a step in the right direction. Let’s work to bring this next step to fruition.

May is Lyme Disease Awareness Month
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Main Line Today magazine published an article about my health journey with Lyme disease. It also highlighted the work I have been doing for ILADS and PA Lyme Resource Network to help the medical world become better informed about the late-stage form of Lyme disease. Read the article here.

 

PA Ranked Number One in Lyme Cases

PA Leads NationPennsylvania leads the nation in number of Lyme disease cases, according to the Centers for Disease Control and Prevention. That means ticks are causing more trouble here, than anywhere else. Read it here: CDC: PA Leads Country in Tick Population.

From AIDS to Lyme

2014.1.14.Lyme.MainSome would say that history is repeating itself with Lyme disease. And Dr. Marc Conant – who was at the forefront of the AIDS movement – is one of those people.

Dr. Conant was one of the first physicians to identify AIDS in 1981 and is founder of the SF AIDS Foundation. He is also one of the few people from the AIDS movement to have crossed over into the Lyme disease struggle. Read more here: From AIDS to LYme: Is History Repeating Itself?

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