A Call for Increased Lyme Disease Research Funding ~ Guest Post By Elaine Hallisey

Lyme disease is a serious tick-borne illness caused by bacteria of the genus Borrelia, corkscrew-shaped spirochetes. Symptoms include fatigue, chills, fever, headache, muscle and joint aches, and swollen lymph nodes, and sometimes a bulls-eye rash. If not diagnosed and promptly treated with antibiotics, later stage Lyme progresses to increasingly debilitating symptoms. These symptoms may include Bell’s palsy, meningitis, pain and swelling in the large joints, sleep disturbances, and/or Lyme carditis.1 Although CDC estimates about 10 to 20% of patients report continuing symptoms after treatment, or Post Treatment Lyme Disease Syndrome (PTLDS), other researchers believe the percentage is higher.

  • CDC estimates 300,000 new cases2 A 2015 Johns Hopkins study estimates over 400,000 new cases with health care costs of $1.3 billion annually, for patients with Lyme disease and PTLDS.3
  • Lyme, the most commonly reported U.S. vector-borne disease, is expected to increase due to climate change and the expanding geographic range of the tick that transmits the disease.4
  • Major research gaps exist regarding geographic distribution, diagnosis, and treatment.
  • What is the true geographic range of Lyme disease? Tick studies, the wide distribution of canine Lyme cases, along with other data raise questions.5,6 Incorrect assumptions lead to missed or delayed diagnosis.
  • Is early Lyme quickly and accurately diagnosed? Many question the sensitivity of the current two-tier testing standard, including CDC and IDSA researchers.7 Late diagnosis results in greater severity of symptoms and increased difficulty in treating patients.
  • What causes PTLDS and how can it be effectively treated? Is the immune system damaged? Is there reason to believe Borrelia infection persists? Some studies suggest spirochete persistence. 8,9 Whatever the cause, patient treatment guidelines must be improved. Researchers and patient advocates call for additional study.
  • These unknowns, combined with continued pain and suffering, lead many desperate PTLDS patients turn to questionable information and unproven treatments.
  • Annual federal funding for Lyme research is only $23 million.10 In contrast, federal funding for West Nile Virus, a far less common vector-borne disease, is $48 million.

Please increase federal funding for Lyme disease research!

1 http://www.cdc.gov/lyme/signs_symptoms/index.html

2 http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html

3 http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0116767

4 http://www.globalchange.gov/health-assessment

5 http://www.ncbi.nlm.nih.gov/pubmed/24568883

6 http://www.capcvet.org/parasite-prevalence-maps/

7 http://cid.oxfordjournals.org/content/early/2015/03/11/cid.civ185.abstract

8 http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

9 http://cid.oxfordjournals.org/content/early/2014/02/10/cid.cit939.abstract

10 http://report.nih.gov/categorical_spending.aspx

Written by Elaine Hallisey, posted with permission.
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