**Comment**

Tuttle brings up many valid questions you may want to consider if you are planning on writing HHS on how best to address Lyme disease.

  • It needs to be understood that this complex illness started out historically through the myopic lens of a rheumatologist and has never expanded to include the many and varied symptoms that are experienced in reality and demonstrated through research.
  • Conflict if interest riddled public health ‘authorities’ still have not admitted the potential of sexual transmission and they still state that congenital transmission is ‘rare’ despite the fact nobody’s counting.  
  • They also continue to ignore the importance of other pathogens that research has shown cause more severe illness for a longer duration of time, and that require different medications.
  • Research has also demonstrated the different forms of borrelia that mainstream medicine continues to ignore, that also require different medications.
  • There is a sordid back-story (in which they took out the most specific band for Lyme) on current CDC-2 tiered testing which tests for ONE strain of borrelia, which misses a majority of cases.  They aren’t even looking for or testing for other pathogens.
  • They falsely continue to state that 60-80% obtain the EM rash, when research shows it’s highly variable and between 0-80%.  Only 25% had the rash in the first ever patient group.  The CDC has received a formal complaint on this false statistic in 2019.  Crickets.
  • Since obtaining a positive test and having the EM rash are requirements to enter research studies, it’s obvious that a HUGE subset of patients are not being studied.  This has been going on for over 40 years and needs to change.
  • The CDC also falsely states that only 10-20% go on to suffer persistent symptoms.  This only includes patients who were diagnosed and treated early.  There is a larger group of 40-60% of patients that are diagnosed and treated late. When you combine the two groups, perhaps over 60% of infected patients are chronically infected and struggle with severe symptoms. This distinction is extremely important because CDC statistics downplay the significance of the problem. Also, research dollars are limited and typically go to issues affecting the most people.

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/

Inquiry to IDSA President Barbara D. Alexander, MD

MAY 4, 2021 — 

Additional information to be shared with the public originating from the monthly NH Lyme Study Commission

Study Commission Website:
http://www.gencourt.state.nh.us/statstudcomm/details.aspx?id=1515&rbl=1&txtbillnumber=hb490

I do not expect a response to the inquiry below so feel free to send a personal note to Dr. Alexander to remind her to answer my three questions.

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “alexa011@mc.duke.edu” <alexa011@mc.duke.edu>
Cc:  All members of the NH Lyme Study Commission
Date: 05/02/2021 8:19 AM
Subject: Inquiry to IDSA President Barbara D. Alexander, MD

May 2, 2021

Infectious Diseases Society of America
4040 Wilson Boulevard Suite 300
Arlington, VA 22203
Attn: Barbara D. Alexander, MD, MHS, FIDSA, President

Dear Dr. Alexander,

As a member of NH Governor Chris Sununu’s Lyme Disease Study Commission, I am forwarding the following three highlighted questions that were brought up during last month’s Zoom meeting. I am hoping that you can answer these questions which came to light after State Epidemiologist, Dr. Ben Chan reviewed your IDSA Lyme Treatment Guideline.

Question #1 refers to Lyme patients in wheelchairs as there doesn’t seem to be a section in your guideline focused on treating the disabled Lyme patient population.

I would also like to call attention to a statement from Dr. Ying Zhang, professor at the Department of Molecular Microbiology and Immunology at the Johns Hopkins Bloomberg School of Public Health:

Standard antibiotic treatment for Lyme disease does not kill persistent Borrelia bacteria.
http://droopyyoupi.blogspot.com/2015/08/standart-antibiotic-treatment-for-lyme.html

Excerpt:

-What has tuberculosis and Borrelia burgdorferi in common? In the late stage of the disease occurs persistent (tolerant) bacteria, which essentially means that the bacteria lasts and lasts and lasts. They protect themselves against antibiotics and are difficult to treat.

– Both Borrelia burgdorferi and tuberculosis is relatively easy to cure in the early stages, even with the use of one antibiotic. In the late stage it is impossible to cure the disease with the same type of treatment in the acute phase, said Dr. Ying Zhang when he visited the year NorVect conference.
________________

Kindly hit “reply all” so all members of the NH Lyme Study Commission will see your response.
Respectfully submitted,
Carl Tuttle
Hudson, NH
 
Three highlighted questions that were brought up during last month’s Zoom meeting:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: All Members of the NH Lyme Study Commission
Date: 04/28/2021 11:04 AM
Subject: April 23rd meeting minutes

Rep Marsh and Commission members,
For the record here is a copy of the questions I asked during the last Zoom meeting which should be summarized in the minutes.

Question #1 Stages of Lyme disease 
Stage 3: Months later; Arthritis (from the March 2th minutes)

I would like to call attention to the 43-page document I sent to all members prior to the start of this study commission. [1] On page two of that document under the topic “Severity of Lyme Disease” (cases that actually made headlines) there are references to Lyme patients in wheelchairs, along with Dr. Neil Spector requiring a heart transplant after his Lyme went untreated for four years.

Untreated strep throat can progress to rheumatic fever, causing irreversible heart damage. Untreated syphilis leads to progressive disability and dementia, and untreated HIV infection progresses to AIDS with significant disability and death. So what happens to a patient with Lyme disease who goes months, years, or decades before diagnosis because of a false-negative serological test result, missing bulls-eye rash, misdiagnosis etc., etc.?

Why isn’t the disabling stage of Lyme disease recognized? I have never seen a public Service Announcement informing the public that you could become horribly disabled or die from Lyme disease yet we have all this evidence nationwide that Lyme is destroying lives, ending careers while leaving its victim in financial ruin.

Question #2 IDSA Treatment Guidelines discourage routine testing for Lyme disease in patients who have been diagnosed with the chronic diseases of our time. 

On page 5 of that 43-page document I sent to the group there is a link to the 5min extended trailer for the documentary “Under our Skin” From the Lyme patient interviews;

I was misdiagnosed with:

-Chronic Fatigue Syndrome
-Lupus
-MS
-Fibromyalgia
-ALS

We also know that Kris Kristofferson was being treated for Alzheimer’s disease only to find out it was Lyme all along.

The 2020 IDSA Lyme treatment guidelines strongly recommend against “routine” testing for disease in patients with:

Typical amyotrophic lateral sclerosis (ALS),
Relapsing-remitting multiple sclerosis (MS),
Parkinson’s disease,
Dementia, or cognitive decline,
New-onset seizures,
Psychiatric illness, and
Children with developmental disorders.

Who in their right mind would not want to make sure that these patients are not suffering from an untreated Lyme infection; especially in a state with one of the highest rates of Lyme in the country?

Question #3 There are no references to failed treatment in the IDSA Guidelines so no acknowledgment of persistent infection. 

My letter to the editor published in the BMJ last June had a short list of failed treatment references; there are actually hundreds so why is the IDSA refusing to recognize this serious problem which is leaving hundreds of thousands if not millions worldwide in a debilitated state?

Letter to the editor of the BMJ:

Lyme borreliosis: diagnosis and management
https://www.bmj.com/content/369/bmj.m1041/rr-1

Carl Tuttle
Hudson, NH

Reference

1. 43-page document I sent to all members prior to the start of this study commission
https://www.dropbox.com/s/cfgrq6m1y645q3b/NH%20House%20Bill%20490%20Lyme%20Disease%20Commission%20Oct%203%202020.pdf?dl=0