As most Lyme patients are aware, patients, physicians and medical practitioners seeking Lyme disease treatment information will only see one set of Lyme treatment guidelines referred to by the CDC. The problematic guidelines they will find, authored by the Infectious Disease Society of America (IDSA), create obstacles to diagnosis and care that leave thousands of Lyme disease patients undiagnosed and untreated.
Most physicians are only aware of this one set of problematic guidelines, and treating outside of their parameters can mean sanctions and fines for them and refusal by insurance companies to cover care and medicine for their patients (additional links provided below for further reading).
Additionally, many of the outdated and poorly supported assumptions about Lyme disease (distribution, viable vectors of spread, persistence in the body, to name a few) and about its diagnosis and care that were used in creating IDSA’s guidelines are likely to skew their thinking about this illness and perpetuate misinformation that is highly counter to effective prevention, diagnosis, and treatment.
This is very costly for patients in need of timely diagnosis and care, and precludes treatment for most patients that are not diagnosed early.
The IDSA guidelines, however, are not the only peer-reviewed guidelines developed per applicable standards. The International Lyme and Associated Disease Society (ILADS) developed evidence based, peer reviewed guidelines that are the first to be developed per Institute of Medicine (IOM) standards. Most patients and Lyme Literate practitioners find that the ILADS guidelines represent more effective treatment and diagnostic methods (based on current and past science excluded from IDSA guidelines) and provide better information about key aspects of the disease, in addition to better information about options, needed by patients and providers to properly asses options for care.
The rationale for sharing and mentioning only one set of standards on major medical and agency websites could be attributed to many factors (see background links below), but most importantly, poses many risks to patients.
Today’s news of the inclusion of ILADS guidelines on the National Guideline Clearinghouse website, is giving patients hope that additional tools will be come more safely available to doctors. Tools they need for their recovery, but tools that would also save countless thousands of future patients from so many of the obstacles they have faced to date.
Personally, this news comes on the same day as my approval for Social Security Disability for Lyme disease. Had these guidelines been available to mainstream local doctors to safely use when I was bit in 2010, it is extremely reasonable to say that I may have recovered from Lyme disease and the coinfections I contracted locally. The geographic bias perpetuated by IDSA guidelines is a primary factor in my misdiagnosis (for the first 3 years of my illness) which led to these illnesses becoming chronic and disabling (this issue has been covered elsewhere on this blog and in articles on NorthernRockiesLyme.org).
As fellow ‘Lyme Warrior’ Rebecca Suchenski so perfectly responded regarding clearinghouse inclusion, “Take a bite out of that IDSA!!!!!”
*There is much to say about this development, so more will be added in the coming hours and days to this post and via additional posts if/as necessary. Published Sept. 21, first update Sept. 22.
Clearinghouse link (Sept. 21, 2015):
Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease.
Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014 Sep;12(9):1103-35. [213 references] PubMed
Today’s post from ILADS (Sept. 21, 2015):
ILADS TREATMENT GUIDELINES ARE NOW LISTED ON THE NATIONAL GUIDELINES CLEARINGHOUSE WEBSITE
ILADS is the first organization to issue guidelines on Lyme disease that were developed in accordance with the IOM standards. The document provides a detailed review of the pertinent medical literature and contains the first set recommendations for Lyme disease based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This rigorous review format is also used by many other well-respected medical organizations including the World Health Organization (WHO), the American College of Physicians, and the National Institute for Health and Clinical Excellence (NICE) in the UK. ILADS guidelines are the only Lyme disease guidelines that included a patient from the Lyme community as an author or as a member of the guidelines development panel.
Today’s Post from Lymedisease.org (Sept. 21, 2015)
LYMEPOLICYWONK: ILADS Lyme guidelines on National Clearinghouse!
These new guidelines are the first Lyme disease guidelines to use GRADE, an exacting method for evaluating the quality of research studies, and to include a Lyme patient on the development panel.
“These guidelines put patients front and center,” according to Lorraine Johnson, JD, MBA, Chief Executive Officer of LymeDisease.org, who is a co-author of the ILADS guidelines.
“There are two standards of care in Lyme disease—those of ILADS and those of the Infectious Diseases Society of America,” Johnson says. “Physicians should discuss both standards of care with patients. Patients should make informed choices in consultation with their doctors about their best treatment options, based on their personal values and circumstances.”
Relevant questions so far ~
What does this mean for patients?
What does this mean for physicians?
How likely or quickly will anything change?
Q&A (From facebook discussions so far)
Questions from various discussions, followed by my own speculative, opinion-based answers
Q: Are IDSA docs going to accept these guidelines? Who will see them and where? (Frances H., with permission)
A: They are actual guidelines in their own right (and already were) now posted on the clearinghouse site (because they are peer reviewed guidelines developed using all applicable standards/processes). So doctors using them (ilads) are using current guidelines, and they can easily demonstrate it. Ilads followed recommendations and standards (for creating guidelines) that IDSA did not. And used better science. It will still take time (asit has been) to get them out there, but cdc and other agencies are now even farther out of line for only mentioning one set of guidelines. IDSA may not change a thing, but they should be worried for a number of reasons.
Q: I am not exactly sure what this means for us. Anyone know? (Stephanie Fischer, with permission)
A: It means that threats to doctors for not using current guidelines are easier to refute, because these are also inarguably also current guidelines. They already were….they were created through applicaple process and peer reviewed. But this further substantiates that. It may not mean an immediate change, but it gives further defense to doctors treating counter to idsa’s guidelines if they are treating within this set. It means better standing when insurance companies refuse to pay based on a doctor not following ‘current guidelines’.
Q: Is the ISDA somehow bypassed? Or, would they be forced to adopt these guidelines? (Stephanie Fischer, with permission)
A: They are two sets of guidelines, but both now approved in the clearinghouse (the national site for guidelines that have met certain standards). So, IDSA guidelines and ILADS guidelines are both ‘current guidelines’. But ILADS followed more rigorous procedures and of course included better science. So for IDSA, it means they still have their guidelines, but doctors should be better able to compare the two and safely use either. IDSA’s do not stand up well side by side, and the information referenced in ILADS guidelines goes a long way to refute most of IDSA’s common phrases to the press, such as “there’s no evidence of chronic lyme” or “there’s no evidence that long term treatment is effective”
Grossman Column: Time to legislate against Lyme disease
Relevant Past Message from ILADS President:
From May 2015 to IDSA regarding guidelines review
ILADS Message to IDSA Lyme Guidelines Panel: Do the Right Thing.
2015 IDSA Guidelines Review Comment Period
From this blog
(Additional links available in blog posts noted above)
Review of Lyme Disease treament leaves out patienst ~ Poughkeepsie Journal
Lyme Patient Advocates Meet with IDSA President, Discuss Concerns About Guidelines Review Process (press release)