LYMEPOLICYWONK: Persistence Personified in Lyme Disease–Those Pesky Human Cases

ByLori

By relying only on these flawed tests, doctors may believe the patient has been cured. However, this is not always the case.  Researchers conducting extensive tissue biopsies of animals, a technique too invasive for clinical practice, have demonstrated disease persistence.

As the chart below shows, persistence of the bacteria in humans after only short-term treatment has also been shown through tissue biopsies of the brain, liver, spleen, skin, eye, bladder, and lymph nodes in numerous published studies.

persistent Lyme disease in humansIt’s time to lay to bed the notion that persistence has not been demonstrated in humans. It has–as evidenced by these 27 case studies.  Many of these studies used biopsies of brain, bladder, synovial fluid, liver, lymph node, central spinal fluid, spleen or iris.  Clearly, this type of invasive tissue sampling is not performed on humans unless it is ancillary to some other essential medical intervention.  The remaining studies used tests that are not in commercial use.

The fact that we have demonstrated persistence in some many cases despite these limitations is significant. The problem with demonstrating persistence on a regular basis is the poor state of testing in Lyme disease.  We need a commercially available test that  is non-invasive to establish persistence on a regular basis to monitor the effects of on-going treatment.

The chart above is adapted from Stricker R, Johnson L. Lyme disease: The next decade. IDR. 2011; http://www.dovepress.com/articles.php?article_id=6013 .

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org. On Twitter, follow me @lymepolicywonk.

Similar Posts

  • Taming the beast: No MUS, No Fuss!

    Patients with Lyme disease know how important the definition of an illness can be. We know that the difference between chronic Lyme and Post Lyme Disease Syndrome is the difference between receiving treatment and being medically abandoned. So what’s with all the “new” language at the IDSA hearing about medically unexplained symptoms? MUS for short. No fewer than 3 IDSA speakers use this expression: Drs. Weinstein, Shapiro, and Wormser. It was like they synchronized talking points. First, let me tell you what MUS and PLDS have in common—no antibiotic treatment. Because—guess why? Because the term MUS applies to diseases of unknown etiology— diseases with no identified cause. But wait, you say. Doesn’t Lyme disease have a cause? You might assume that given that the bacteria has been identified, Lyme disease has a cause and isn’t really “unexplained”?

  • LYMEPOLICYWONK: IDSA Voting Procedures under Review by the Connecticut Attorney General

    The Connecticut Attorney General is reviewing the IDSA report to determine whether the IDSA has complied with the terms of the antitrust Settlement Agreement. Attorney General Richard Blumenthal's initial review of IDSA voting procedures on the guideline recommendations found the IDSA violated the agreement by rigging the vote to favor no change in the guidelines. We have been informed that both Washington State Attorney General and the Attorney General in Pennsylvania have sent letters to the IDSA requesting that they comply with the Settlement Agreement voting procedures. In addition, US Legislator Chris Smith and US Senator Chris Dodd also wrote the IDSA expressing "deep concern" regarding the IDSA voting procedures. Faced with this scrutiny, the IDSA recast its vote on all recommendations to comply with the agreement–with a major exception. They refused to redo the vote on the one recommendation that required that diagnosis of Lyme could only be made if there is a positive blood test. This vote is critical because even under the initial flawed voting procedure the vote split 4 to 4 which means there was no consensus on the requirement that diagnosis be confirmed by positive lab tests. The Attorney General is currently reviewing the IDSA report to determine whether the IDSA has complied with the Settlement Agreement. The press release of the CT AG is set forth below. I encourage those concerned to contact the CT AG Office and let them know that you want the vote redone on the major issue of lab test confirmation for diagnosis. Details follow.

  • CALDA, LDA and TFL Press Release on IDSA Hearing

    CALDA, the national Lyme Disease Association and Time for Lyme have issued a joint press release regarding the IDSA Lyme review hearing, which is schedule for July 30th in Washington D.C. The release highlights the growing opposition to the IDSA guidelines, the importance of acknowledging the full spectrum of science in Lyme disease, and the importance of permitting clinical judgment and treatment options for patients. Concerns are also raised about the current process, which Attorney Lorraine Johnson points out is not impartial because IDSA controls the process and has selected both the panel members and those who may present before the panel. Of critical importance is that fact that no physicians who treat chronic Lyme disease were selected to sit on the panel. The testimony will be aired live over the internet on July 30th.

  • LYMEPOLICYWONK: FDA Proposed Regulation of Lyme Tests? Take the Survey!

    LymeDisease.org has launched a new survey regarding the FDA’s proposed regulation of Lyme lab tests. We need your views on this very important topic. This is extremely time sensitive so please respond quickly! We will use this information to assess patient views and to inform our meetings with the FDA. Our last survey drew over 6,000 responses and was published this year. We need your input now!

  • LYMEPOLICYWONK: IDSA and Lyme Hearings: TOP 10 Count Down for the Masters of Manipulation?

    I’ve been getting a lot of email lately about the IDSA. Most of it is about the voting issues, but some of it is about other things they have done to “game the system”. Here’s a list of the top 10 questions patient ask me about the IDSA that begin with the word “why”? As Mark Twain says, “few things are harder to put up with than the annoyance of a good example”—or in this case, ten good examples of why the Lyme community should question the advice to “trust us, we’re the experts” when it comes to the IDSA. Let me know if you think there are any “whys” I left off the list.