Of course there was no response to my inquiry below addressed to Dr. Steere....

Please note: Dr Steere is not an Infectious Disease specialist, but a Rheumatologist, which probably explains his "fixation" on arthritic phenomena associated with Lyme disease, and treatments with anti-immune approaches rather than antibiotics.

---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: asteere@partners.org, tickbornedisease@hhs.gov
Cc: (98 Undisclosed recipients)
Date: April 15, 2020 at 9:23 AM
Subject: Posttreatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses

The American Society for Clinical Investigation

Posttreatment Lyme disease syndromes: distinct pathogenesis caused by maladaptive host responses
https://www.jci.org/articles/view/138062

Allen C. Steere  April 13, 2020

Excerpt:

"Lyme disease can usually be treated successfully with 2–4 weeks of oral antibiotic therapy, or if necessary, with 4 additional weeks of IV antibiotics. However, disabling posttreatment syndromes may still develop, which appear to result primarily from disadvantageous or maladaptive host responses to the infection that persist after spirochetal killing with antibiotics."

____________________________________________

April 15, 2020

Massachusetts General Hospital
55 Fruit Street, CNY 149/8301
Boston, Massachusetts 02114
Attn: Allen Steere, MD, Director of Translational Research in Rheumatology

Dr. Steere,

The vast majority of Lyme patients I have personally met over the past twelve years never developed the bulls-eye rash and as a result went months, years or decades before diagnosis never associating the flu like symptoms they may have experienced early on.

Your fixation on the rheumatologic manifestations of Lyme disease (swollen knee) with bulls-eye rash seems to be an exception not the rule. Patients who progress to late neurologic Lyme are almost always incapacitated and the recommended two or three weeks of antibiotics does little or nothing for these patients. Late neurologic Lyme is not rare as you suggest in your viewpoint.

[As an infectious disease specialist] you should be well aware that strep throat left untreated progresses to rheumatic fever causing irreversible heart damage. The thirty-year focus on the acute stage of Lyme with bulls-eye rash has done nothing to improve our knowledge for how Lyme disease disables its victim.

The truth about the severity of Lyme disease was exposed in the 2008 documentary “Under our Skin” but those patients who advance to the disabling stage of Lyme disease have been swept under the rug as if this stage does not exist! [1]

Under Our Skin - Extended Trailer
https://www.youtube.com/watch?v=sxWgS0XLVqw

In reference to the detection of tick-borne disease, please take a moment if you will to review the following list of publications using direct detection methods for identifying ongoing spirochetal infection. I will summarize the purpose of this correspondence at the end of this list:

1. Seronegative Chronic Relapsing Neuroborreliosis. (Stony Brook Lyme clinic)
https://www.ncbi.nlm.nih.gov/pubmed/7796837

"We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen."

2. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis.(March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstrac

“Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”

3. CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis
https://www.sciencedirect.com/science/article/abs/pii/S1054880715000253

Borrelia burgdorferi was identified via special stains, immunohistochemistry, and polymerase chain reaction. The findings support B. burgdorferi as the causative agent for his fulminant carditis and that the patient suffered fatal Lyme carditis.

4. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html

The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy. Spirochetes were identified as Borrelia burgdorferi by molecular testing with specific DNA probes.

5. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
http://danielcameronmd.com/culture-evidence-of-lyme-disease-in-antibiotic-treated-patients-living-in-the-southeast/

Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment

6. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
https://www.ncbi.nlm.nih.gov/pubmed/24968274

Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.

7. The Long-Term Persistence of Borrelia burgdorferiAntigens and DNA in the Tissues of a Patient with Lyme Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963883/

Autopsy tissue sections of the brain, heart, kidney, and liver were analyzed by histological and immunohistochemical methods (IHC), confocal microscopy, fluorescent in situ hybridization (FISH), polymerase chain reaction (PCR), and whole-genome sequencing (WGS)/metagenomics. We found significant pathological changes, including borrelial spirochetal clusters, in all of the organs using IHC combined with confocal microscopy.

8. Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
http://www.mdpi.com/2227-9032/6/2/33

“This pilot study recently identified chronic Lyme disease in twelve patients from Canada. All of these patients were culture positive for infection (genital secretions, skin and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.”
________________________

Note: For the sake of time this is just a short list of the hundreds of publications identifying persistent Borrelia infection.

What is the purpose of this email?

Persistent infection after extensive antibiotic treatment has been identified through the use of direct detection methods in academic centers and autopsy findings yet the average patient cannot obtain these tests to justify how sick they are with their chronic active infection. Serology cannot be used to gauge treatment failure or success which makes it the ideal tool for concealing persistent infection. Not to mention that humans do not produce antibodies against Borrelia for 4-6 weeks after a tick bite. By the time serology tests are positive, the spirochetes have already invaded various deep tissues, like those in syphilis, and are hard to eradicate with antibiotics.

Serology has allowed the 30-year dogma to persevere [1] whereas direct detection methods are exposing the exact opposite.

We are dealing with a life-altering/life-threatening infection with faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control whatsoever; a public health disaster.

Question: Why weren’t any of these references included in your paper Dr. Steere? An astute fifth grader with access to PubMed could easily find these studies and hundreds more referencing persistent infection.

Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH

My letters to the editor have been published in JAMA, The Lancet Infectious Diseases, Arthritis & Rheumatology, and the BMJ.

Cc: Rexford S. Ahima, MD, PhD , Editor, The Journal of Clinical Investigation

The Tick-Borne Disease Working group

Reference

1. Lyme Disease Is Hard to Catch And Easy to Halt, Study Finds
New York Times By GINA KOLATA Published: June 13, 2001
http://www.nytimes.com/2001/06/13/us/lyme-disease-is-hard-to-catch-and-easy-to-halt-study-finds.html