Last week, the Centers for Disease Control and Prevention (CDC) published an article in the Morbidity and Mortality Weekly Report (MMWR) titled “Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States”
This article received a lot of attention in the media. However, not everyone was thrilled with the publication.
The Chief Executive Officer of LymeDisease.org, Lorraine Johnson, JD, MBA joined me to discuss the issues she has with the report–both scientific and ethical. In addition, Ms. Johnson discussed issues concerning chronic Lyme to include treatment and diagnosis–two issues that divide Lyme advocates and the CDC and the Infectious Diseases Society of America (IDSA).
She also discussed the big data project, MyLymeData.
Podcast: Play in new window | Download
Subscribe: Apple Podcasts | Stitcher | RSS
Related:
- Lyme disease expert talks diagnosis, treatment and ‘chronic Lyme’
- Lyme Madness author, Lori Dennis, for the full show
- Lyme disease bacteria, Borrelia, able to form biofilms that make them resistant to treatment
- Lyme disease: Global Lyme Diagnostics announces new test is available
- Powassan could become a greater public health threat than Lyme disease: Yale researcher
- Lyme disease still has a big cost to society when it comes to outdoor activities: Yale researchers
- Post-Treatment Lyme Disease Syndrome: UND researchers seek treatment
- Lyme Disease Biobank launched, one-stop access to patient samples
- Babesiosis cases likely on the rise
listened to the interview-appalled-how could a governmental body be so arrogant?
There is another concern.. insurance companies may try to use that article to limit or deny lyme treatment w/ IV antibiotics by citing this in their medical policies. If treatment is denied, appeals should be done and if it was me, I’d include all of the rebuttals with my medical records.
Thank you, Loraine Johnson, for the superb representation of the Lyme community. The MMWR article of Dr. Nelson was extremely irresponsible and unprofessional attack on the new Lyme sciences as we the Lyme community understands it. We have to ask why what who would be behind her behavior.
Thank you, Lorraine. I would argue that active Lyme disease is identified by positive IgM western blot results. Medicacal texts about antigenic variation in a wide variety of dieseases have been published. Barbour concedes that antigenic variation and non-expression causes and an ongoing IgM response. The Infectious Diseases Society of America has summarily declared that IgM western blot results are unreliable in a disease that is known to be chronic and that is known to involve antigenic variation. Prior to 1994, several of the IDSA authors published articles conceding that antigenic variation occurs frequently in Lyme disease. I don’t understand why active infection is recognized in at least a dozen other intractable infections that involve antigenic variation when 100% specific IgM western blot results are positive years after the infection was transmitted, but Lyme disease is the only exception in which IgM western blot results during chronic infection are purportedly inaccurate, with no evidence for inaccuracy, but a good deal of speculation by the IDSA as to why such test results might be inaccurate.
Thank you, Lorraine. I would argue that active Lyme disease infection is identified by positive IgM western blot results. Medical texts about antigenic variation in a wide variety of diseases have been published. Barbour concedes that antigenic variation and non-expression causes and an ongoing IgM response. Yet the Infectious Diseases Society of America has summarily declared that IgM western blot results are unreliable in a disease that is known to be chronic and that is known to involve antigenic variation. Prior to 1994, several of the IDSA authors published numerous peer-reviewed articles (for what pre-publication peer review is worth) conceding that antigenic variation occurs frequently in Lyme disease. I don’t understand why active infection is recognized in at least a dozen other intractable infections that involve antigenic variation when 100% specific IgM western blot results are positive years after the infection was transmitted, but Lyme disease is the only exception in which IgM western blot results during chronic infection are purportedly inaccurate, with no evidence for inaccuracy, but a good deal of speculation by the IDSA as to why such test results might be inaccurate.
Thank you, Lorraine.
I would argue that active Lyme disease infection is clearly identified by positive IgM western blot results. Medical texts about antigenic variation in a wide variety of diseases have been published, including chapters on Lyme disease by Barbour, who concedes that antigenic variation and non-expression cause and an ongoing IgM response. Yet the Infectious Diseases Society of America has summarily declared that IgM western blot results are unreliable in a disease that is known to be chronic and that is known to involve antigenic variation. Prior to 1994, several of the IDSA authors published numerous peer-reviewed articles (for what pre-publication peer review is worth) conceding that antigenic variation occurs frequently in Lyme disease. I don’t understand why active infection is recognized in at least a dozen other intractable infections that involve antigenic variation when 100% specific IgM western blot results are positive years after the infection was transmitted, but Lyme disease is the only exception in which IgM western blot results during chronic infection are inexplicably inaccurate — with no evidence for inaccuracy, but a good deal of pure speculation by the IDSA as to why such test results might be inaccurate. Of hundreds of thousands of test results, I am aware of only ONE purportedly false positive test result with the IgM western blot using IGeneX criteria, reported in the internal validation study published by IGeneX in 2007, which incorporated Engstrom et al.’s [1] data on early Lyme disease as well as the two most highly-specific bands (when appearing simultaneously), i.e., bands 31 and 34. And even that “false positive” was actually a false negative when the CDC performed its testing. “This sample was included in the CDC panel. It was negative for ELISA by all methods, but positive for IgM bands 23-25. 31, 34. 39. and 41 kDa and IgG bands 31, 41, and 58 kDa. Thus. this sample [was obviously positive and] is of questionable origin.”[2]
In 1994, Dr. Paul Fawcett and Dr. Alan Steere published an abstract of a study reviewing the accuracy of the testing criteria proposed at the Dearborn Conference and subsequently adopted by the IDSA and CDC. Both doctors concluded that under the new criteria (now “old criteria” that continue to be used), only 20 of 66 symptomatic pediatric patients with a history of a tick bite and bull’s eye rash who were positive under the old western blot interpretation were considered positive under the new criteria to result.[3]
It is simply undeniable that the CDC and IDSA are not relying upon scientific evidence to justify the continue use of inaccurate testing. Perhaps we should be asking talk show hosts what they think is motivating the CDC and IDSA, after explaining the effects of The Bayh-Doyle Act of 1980, as amended.
1. Engstrom SM, Shoop E, Johnson RC. Immunoblot interpretation criteria for serodiagnosis of early Lyme disease. J Clin Microbiol. 1995 Feb;33(2):419-27.
2. . Shah JS, Du Cruz I, Wronska D, Harris S, Harris NS. Comparison of specificity and sensitivity of Igenex Lyme western blots using Igenex criteria and CDC criteria for a positive western blot. Townsend Letter. 2007; 275: 129-135.
3. Rheumatology Conference in Texas, chaired by Dr. Alan Steere, MD (1995 Rheumatology Symposia Abstract #1254, Dr. Paul Fawcett, et al.)