CDC

May 2016 Trip to Capitol Hill, IDSA Headquarters, and Lyme Policy and Science Forum

May 2016 Trip to Capitol Hill, IDSA Headquarters, and Lyme Policy and Science Forum

Each May, The Mayday Project hosts a rally outside of the Infectious Disease Society of America’s Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.  Patients travel from around the region […]

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Three minutes, three calls, five people ~ Calling Congress Jan. 26/27

Three minutes, three calls, five people ~ Calling Congress Jan. 26/27

This call for action is based upon the failures of CDC in the handling of public policy on Lyme disease, including preferential treatment of the Infectious Diseases Society of America (IDSA), a private organization; failure to provide medical providers and patients with ALL the available information on diagnosis and treatment; extensive under-reporting of the disease; and conflicts of interest and violations of ethics rules.

ILADS peer reviewed Lyme Guidelines appropriately added to National Guideline Clearinghouse: preliminary context notes and relevant links

ILADS peer reviewed Lyme Guidelines appropriately added to National Guideline Clearinghouse: preliminary context notes and relevant links

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 […]

Mary Beth Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients

Mary Beth Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients

If you only share one article this month (or even this year) about Lyme disease, consider this one. I’ve describe multiple articles lately as ‘must read’ and I’ve got a great many more to catch up on.  This one, however, is a must, must, must share and a must link-to in addition to being a must […]

PostStar Link ~ Must Read Commentary by Holly Ahern

PostStar Link ~ Must Read Commentary by Holly Ahern

Commentary: Diagnosis, treatment of Lyme Disease controversial May 24, 2015 As an advocacy organization, Lyme Action Network (of which I am co-founder) does not “support” medical guidelines. LAN does, however, support the rights of patients to be advised that there is more than one evidence-based, medically recognized standard of care for Lyme disease, and that […]

Tweeting the Surgeon General for #NPHW ~ Kudos to Patients for Great Questions

It took more energy than I had to submit what I could for IDSA’s comment period on it’s final day.  It was not an easy process, and I am still exhausted and recovering. So many things happened yesterday that the events will likely spill into multiple posts and will be things we remember for a […]

Personal Overview of the IDSA ‘Public Comment’ Period ~ Part 1

We all know how important this is.  Not all patients know all the pieces or felt ready or physically or mentally able to respond directly.  I’ve had firm plans to submit my own comments, as well as question suggestions (based on IDSA President Calderwood’s statements following his meeting with The MayDay Project), and to respond […]

IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period)

Foreward ~ I’m so behind on my own comments, and the deadline for the IDSA Public Comment period is so fast approaching, that multiple posts with relevant or even related content or links are going to published in a rough state, including things like un-formatted and un-annotated lists of links, just to get the information out […]

Arguing Chronic Lyme ~ A (Very) Basic Overview & A Few Good Links

Arguing Chronic Lyme ~ A (Very) Basic Overview & A Few Good Links

This overview was initially part of another post from September (with patient accounts of long-term Lyme), but there were just too many ideas there to be valuable.  However, referencing that post is extremely valuable in digesting this overview, and in understanding why you should take the time to do so.  Dozens of patients were willing […]

Preliminary Notes ~ IDSA Comment Period and Mayday Project Webinar

Preliminary Notes ~ IDSA Comment Period and Mayday Project Webinar

This post has been tidied a bit (3/12/15) but is still intended to provide just preliminary information regarding the announcement of IDSA’s 30-day public comment period (ending April 9) and the Webinar held March 10th by The Mayday Project. Links to the primary documents plus webinar resources are listed below, and background info regarding past […]

Lyme in Oregon ~ Task Force Announces Draft Proposed Lyme Bill

Lyme in Oregon ~ Task Force Announces Draft Proposed Lyme Bill

A subcommittee of the Oregon Lyme Leaders (the Oregon Lyme Leaders Task Force) has been working toward draft legislation, drawing on months of collaboration and, for some or all members, years of preparation. The task force has used data from studies and surveys which were spearheaded by Oregon Lyme Disease Network over the last ten […]

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part One)

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part One)

This is part one (focusing on the science) of a response to a recent article which questioned Real Housewives star Yolanda Foster’s Chronic Lyme Disease diagnosis and claimed that there is “no good evidence” that Chronic Lyme Disease exists. The author’s inflammatory title, “Real Housewife, Fake Disease” is fairly ironic, given that the doctor writes under a fake […]

Photos and Videos from Philadelphia Lyme Protest

In October, I posted links about the Philadelphia rally (before, during, and after), but I didn’t get around to posting many photos directly to this blog.  I did put links to some of the facebook photo albums (on the Invisibly Lyme Montana facebook page) in past posts, but here they are again, with a link to […]

Deer Ticks Confirmed in North Dakota Carry Lyme Disease and Important Implications for ‘Non-Lyme’ States

Deer Ticks Confirmed in North Dakota Carry Lyme Disease and Important Implications for ‘Non-Lyme’ States

Recent findings published in the Journal of Medical Entomology carry critically important implications for Lyme Disease detection in Montana and other states currently not considered Lyme endemic. Although North Dakota was considered to be outside the range of deer ticks (Ixodes scapularis), researchers sampled nine locations in North Dakota and found deer ticks present at six of them, including […]

CDC Youtube Video NEEDS Comments

My comment is posted following the video.  Please visit, give it a thumbs down and tell them what you think. My comment: I was told my Bell’s palsy was definitely a coincidence, and not related to the tick bite I’d gotten at work (with my federal employer) a month earlier. The reason that doctors insisted […]

Mission Confusion ~ CDC Article Link

“The agency has a severe case of mission confusion”.  Cross-posted on Invisibly Lyme Montana facebook page: Disease uncontrolled: Swift decline of the CDC Demonstrating that Lyme diagnosis and care is not the only area where the CDC is off kilt…. I speculate there are serious legal issues (in addition to the profound ethical/moral issues) with the […]

Lyme Disease Articles on Hub Pages ~ First Two

Hub Pages (a writing website) kindly added a Lyme Disease Topic in their Health section.  One of the author’s whose work I’d been reading was in Philadelphia, but hadn’t put it together until after sharing some of her work on Facebook.  I have photos of both of us holding up/carrying the same sign.  We met […]

“Recent” Tick Science From 1909, Revised in 1949 (Then Apparently Forgotten)

Until at least 1949, only soft bodied ticks were considered to carry the spirochetes later learned to be associated with Lyme disease.  Later it was found that hard bodied ticks carried them also, but I’m at a loss as to how it was forgotten that they also were carried by soft bodied ticks. For the […]

Kristine’s Letter ~ 1,000 Letters Lyme Campaign

This is another patient’s letter from the 1,000 Letters Lyme Campaign, posted with permission. See also Heather’s Letter, My Letter, or visit the group on facebook (The 1,000 Letters Lyme Campaign) to request membership (you can participate without being on facebook).  More stories will be published over time, but these are just a few examples of […]

Heather’s Letter ~ Patient Stories Beyond Montana

The following is one of hundreds of letters written so far as part of an awareness campaign, published with the author’s permission. She has since contributed significantly to spreading of other ongoing Lyme campaigns through social media networking and is soon to embark on the next phase of her lyme journey by beginning care with […]