TBD Working Group: Please pay attention to these concerns
The following message was sent to the Tick-Borne Disease Working Group after its June 4 meeting.
by Jeanne Ryan
As an individual in recovery from late-stage/chronic Lyme disease and the co-infections babesia and bartonella, thank you to the group and, in particular, to Pat Smith et al, for doggedly pursuing legislation that might provide some relief to the countless people who are suffering from and, in some cases, dying due to missed tick-borne-disease diagnoses and/or undertreatment.
I watched the live stream of your meeting yesterday.
I have some comments that I hope the group and the relevant subcommittees will consider:
For the whole group: Please make sure your work includes bartonella/“bartonella-like” organisms.
For the whole group and the relevant subcommittees:
I am concerned with an unidentified “contractor” reviewing literature on complex and politicized issues regarding tests and persistent Lyme.
The New England Journal of Medicine, for example, continues to publish articles that call for denial of certain kinds of treatment, though there is no scientific consensus.
In 2016, NEJM published a limited study on the use of “longer-term” antibiotics:
and an accompanying editorial that stated, “prolonged antibiotic therapy is not the answer”:
This, in spite of numerous comments that questioned the study’s design and conclusion:
How will the contractor-directed literature review deal with the substantial disagreement and potential bias that exist in the literature?
More specifically, related to the Lyme-specific subcommittees, I urge clarification of the persistent-symptom question for topic review via the HHS contractor.
The question I heard yesterday and wrote down was the following: “What are the causes of persistent symptoms in Lyme disease?”
As Pat Smith alluded to during yesterday’s meeting, there is ample current peer-reviewed research that clearly addresses this question: Bb has the ability to persist, even after different courses of treatment. Certainly, the ongoing presence of the causative pathogen provides a clear answer regarding persistent symptoms.
Here is a small sample of “persister” articles:
I hope the Lyme co-chairs will revise their topic-review question to focus on literature that examines pressing issues related to persistent Lyme bacteria, such as the following:
1. What mechanisms allow Bb to persist, in particular following various types of treatment?
2. What novel interventions, antibiotic and other, show efficacy in eliminating the forms of persistent Bb?
My second comment is related to the question on available direct diagnostics for tick-borne disease. Watching the live stream, I couldn’t identify which subcommittee/individual is handling this topic-review query.
I wrote down the test topic-review question as, “What are direct diagnostics of tick-borne diseases and their availability?”
Regarding Bb, this question raises serious concerns.
Any test-inventory discussion must acknowledge the inherent problems with sensitivity because the bacteria may be able to sequester itself in ways that are not fully understood or identified. I am concerned about presenting tests that may not actually work.
Regarding Bb, I urge the co-chairs handling this query to revise it to help the group and Congress understand how tick-borne illness is being diagnosed and to evaluate the extent to which unreliable tests — in particular the CDC/FDA-approved 2-tiered ELISA / Western Blot — continue to be used for diagnosis and to deny treatment. Perhaps a question along the following lines:
1. For tick-borne illness, including Lyme disease, what diagnostic protocols are currently in use?
Ongoing endorsement and use of the FDA 2-tiered testing protocol has caused unbelievable levels of unnecessary suffering. Its use relates to insurance company practices and access to care. And it deserves legal examination related to possible consumer fraud and medical battery.
Finally, some thoughts regarding yesterday’s meeting include the following, in particular for Dr. David Walker:
1. Referring to the last group’s efforts, hearing you say, “We’ve done Lyme disease,” is unbelievably discouraging.
For patients, the reality on the ground today is unchanged. We don’t have effective diagnosis or treatment, and a pernicious bacterial epidemic that should be receiving relentless attention and research continues to be ignored. Please, please stay the course until Bb is fully understood and can be effectively diagnosed and treated.
2. Regarding the commitment to respect and collaboration, which you emphasized as crucial to the group’s efforts, please keep these principles in the forefront, above all, regarding the public and patients. My own involvement with committees has instructed me in the ways in which desire to maintain calm waters within the peer group can eclipse the obligation the group holds to those on whose behalf it has been formed.
Thank you all for your time and attention! The lives of many depend on your efforts!
Jeanne Ryan lives in Buffalo, New York.
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