Investigative journalist Mary Beth Pfeiffer has broken a story in the Huffington Post that has significant impact on patients. For years, the Centers for Disease Control & Prevention (CDC) has been citing 10-20% of patients treated with antibiotics for Lyme will have lingering symptoms. Now, CDC has changed that stat on its website to say a “small percent” will have lingering symptoms that can last for more than 6 months of what is “properly called Post-Treatment Lyme Disease Syndrome,” not “chronic Lyme disease.”
In a website paragraph without even a citation to back it up, the CDC has reverted back to the dangerous dogma which has prevented patients with chronic Lyme from receiving treatment. Ms. Pfeiffer contacted CDC to ask about the change in language and was told it was based on a 2015 study (Weitzner 2015) which indicated a frequency of less than 5% for Post Treatment Lyme Disease Syndrome and on a reevaluation of the Marques study from which the 10-20% estimate was originally derived. Click here for Huffington Post article
No mention is made by CDC of the many studies which show the figure for chronic Lyme/PTLDS to be much higher, and the Dersch 2015 paper, which is an analysis of dozens of studies showing a resultant 28% with long-term symptoms. No reevaluation information from that Marquez study—a reevaluation they purported to have performed– seems to be provided anywhere, and no peer review on that reevaluation issue appears to have surfaced.
A double standard is in play, as the broad-brushed conclusions on the long-term treatment trials for patients, conclusions supported by both CDC and NIH– long term treatment provided no benefit to Lyme patients—have been challenged in a number of peer review articles, which refute those broad brushed conclusions; yet to date, neither CDC nor NIH have changed/softened their position on that issue and continue to support that data on websites while ignoring science which refutes those conclusions.
This double standard has enabled the IDSA to continue to select and use the same biased science for the basis of their Lyme treatment guidelines which prevent patients from receiving antibiotic treatment when they remain symptomatic. Many advocates have written to CDC to make it aware of that injustice, but CDC’s stance has not shifted (nor has NIH’s).
They do NOT want patients to be treated for more than a few weeks for a severely mentally and physically debilitating disease. That has been a fact for most of my 32 years of involvement as an advocate. They never wanted to acknowledge the numbers, or the spread− none in the South and the Midwest they insisted– using selective science to support those stances. Now the increasing Lyme case numbers which CDC has finally had to acknowledge (300,000 cases annually) and the fact that the tick vectors for Lyme now occur in almost 50% of the counties in the US has presented them with a dilemma. More disease in more places means more chronic patients who are seeking treatment.
According to the CDC answer to Ms. Pfeiffer cited in the Post article on the change downward in numbers of PTLDS cases, “this is not a substantive change….The point of the paragraph is simply to make patients aware that PTLDS occurs.” The tens of thousands afflicted with chronic Lyme annually don’t need to be told they have a syndrome, nor do they need to be marginalized more than they already have been for decades. They do not need continuing dogma that initiates more studies designed to repeatedly and unsuccessfully camouflage the truth about Lyme and its persistence, “science” that has sucked hundreds of millions of dollars from government coffers—funds that were allocated by our federal representatives to provide real help for sick people not to erase them from the public consciousness.
Patients need and deserve a substantive change, a solution using 21st century science, e.g., persisters, biofilms, other mechanisms the Lyme bacteria use to avoid complete eradication. An agency whose job is to provide disease control and prevention for the American public should be championing that solution rather than standing behind shoddy science destroying individuals and families across this country and the world. Pat Smith, LDA President