Ad Hoc Committee’s Historical Improvement in the ICD Codes for Lyme
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JAMA: Shapiro ED, Wormser GP. Lyme Disease in 2018: What is New (and what is not) Pt. 2
PETITION UPDATE
JAMA: Shapiro ED, Wormser GP. Lyme disease in 2018: what is new (and what is not) (Part 2)
JAN 18, 2019 —
Please see the letter below addressed to the Tick Borne Disease Working Group and Assistant Secretary for Health, ADM Brett P. Giroir, M.D.
The letter is a follow-up to my original inquiry to Dr. Wormser on Jan 4, 2019 found here:
———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, brett.giroir@hhs.gov
Cc: (65 Undisclosed recipients)
Date: January 18, 2019 at 10:38 AM
Subject: Re: JAMA: Shapiro ED, Wormser GP. Lyme disease in 2018: what is new (and what is not)
To: The Tick Borne Disease Working Group and Assistant Secretary for Health, ADM Brett P. Giroir, M.D.
For the record, I have not heard from Dr. Gary Wormser of New York Medical College regarding my inquiry referencing Lyme disease in his JAMA publication of Dec 18, 2018.
I had two questions for Dr. Wormser highlighted below:
- “It is well known that untreated streptococcal pharyngitis 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. What happens to the patient with Lyme disease who goes months, years or decades before diagnosis because of a false negative serological test?”
- “What is the motivation for downplaying the severity of Lyme disease while ignoring patient outcry for thirty years?”
In Dr. Wormser’s absence I will answer these questions as a victim of late stage Lyme untreated for twelve years.
FIRST QUESTION
Lyme disease patients who go months, years or decades before diagnosis are often misdiagnosed and treated for the chronic diseases of our time; diseases with no known etiology.
Multiple sclerosis, Parkinson’s disease, ALS, Fibromyalgia, Chronic Fatigue Syndrome, Alszimer’s disease, Lupus etc. etc. etc.
Case in point:
Current lawsuit for Lyme misdiagnosed as Multiple Sclerosis after four negative antibody tests for Lyme disease:
(1) [J-13-2018] IN THE SUPREME COURT OF PENNSYLVANIA MIDDLE DISTRICT http://www.pacourts.us/assets/opinions/Supreme/out/Majority%20Opinion%20%20ReversedVacatedRemanded%20%2010373940443079867.pdf?cb=1
(2) Kris Kristofferson Diagnosed with Lyme Disease After Alzheimer’s Misdiagnosis
JULY 7, 2016 – 5:16 PM
http://www.soundslikenashville.com/news/kris-kristofferson-diagnosed-with-lyme-disease-after-alzheimers-misdiagnosis/
Spend time at any of the hundreds of Lyme support group meetings across the United States (19 in Pennsylvania alone) and you will hear story after story of misdiagnosis with the majority reporting negative antibody tests (or refusal to test) for Lyme disease. If Lyme patients don’t obtain the correct diagnosis then their “misdiagnosis” is treated maintaining the status quo. How many Lyme patients are currently in the healthcare system being treated for everything else but their infection?
Clinicians who are treating Lyme exclusively are seeing far greater rates of cancer in the late stage Lyme patient. (Including me)
SECOND QUESTION
“What is the motivation for downplaying the severity of Lyme disease while ignoring patient outcry for thirty years?”
Patient testimony is reporting a disease that is destroying lives, ending careers while leaving the patient in financial ruin and this has been taking place for three decades so it is unclear why anyone would want to downplay the severity of Lyme after taking an oath to “First do no harm”
Book I, of the Hippocratic school: “Practice two things in your dealings with disease: either help or do not harm the patient”.
Quote from Senator Richard Blumenthal:
“Today for me culminates more than a decade of work and probably a decade more, because I’ve seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease”
Source: http://ctmirror.org/2011/07/18/blumenthal-takes-lyme-disease-fight-senate/
Blumenthal takes Lyme disease fight to the Senate July 18, 2011
Ignoring patient outcry and downplaying the severity of Lyme disease as described in the attached 2012 letter addressed to past Health Secretary Kathleen G. Sebelius has paralyzed the response to this runaway plague. https://www.dropbox.com/s/9e3uckwzkpkfbhe/Nine%20Step%20Program.doc?dl=0
We have a health crisis causing unimaginable pain and suffering and those who have controlled the narrative for the past three decades (with the support of the U.S. Centers for Disease Control) are %100 percent responsible.
Respectfully submitted,
Carl Tuttle
Lyme Endemic Hudson, NH
Cc: Alan Kadish, M.D., President, New York Medical College
Five Brands of Dental Floss May Expose People to PFAS
https://www.buzzfeednews.com/article/nidhisubbaraman/oral-b-pfas-dental-floss?
These Five Brands Of Dental Floss May Expose People To Harmful Chemicals, Study Finds
PFAS “forever chemicals” are found in many consumer products, including nonstick cookware, carpets, and easy-glide floss.
Andreypopov / Getty Images
People may absorb toxic industrial chemicals from some brands of dental floss, a new study says. It’s the latest evidence that Americans are routinely exposed to this vast class of chemicals, known as PFAS, some of which have been linked to heart disease and cancer.
Women who said they flossed with Oral-B Glide floss had higher levels of a PFAS called perfluorohexane sulfonic acid (PFHxS) in their blood than those who didn’t, researchers reported Tuesday in the Journal of Exposure Science & Environmental Epidemiology.
“I’m not trying to tell people, ‘don’t floss,’” Katie Boronow, a staff scientist at the Silent Spring Institute in Newton, Massachusetts, who was part of the study, told BuzzFeed News. “It’s about choosing safer products.”
The CDC cites dental floss on a list of products that could contain PFAS. Studies in people have linked PFHxS to liver damage and a decreased immune response.
Although scientists have known that PFAS are used in Glide, “this finding suggests that it may be more important than expected,” said Courtney Carignan, an associate professor of food science and toxicology at Michigan State University who was not part of the study.
In addition to looking at the women’s blood levels, the researchers analyzed the chemical makeup of 18 types of dental floss. Six tested positive for fluorine, an element that they said indicates the presence of PFAS compounds. Those products were CVS Health EaseBetween SuperSlip Dental Floss Waxed, Oral-B Glide Pro-Health Mint and Glide Pro-Health Original, Crest Glide Deep Clean Cool Mint Floss, Safeway Signature Care Mint Waxed Comfort Floss, and Colgate Total Dental Floss Mint.
“The safety of the people who use our products is our number one priority. Our dental floss undergoes thorough safety testing and we stand by the safety of all our products,” a spokesperson for Procter & Gamble, the company that owns the Oral-B and Crest brand, told BuzzFeed News by email.
A spokesperson for CVS Pharmacy said by email that the company is “committed to assuring that the products we offer are safe, work as intended, comply with regulations and satisfy customers. We will be reviewing the study and will also contact the supplier of this product.”
Colgate-Palmolive and Safeway did not respond to requests for comment from BuzzFeed News.
PFAS compounds are used in the manufacture of many consumer products, including Teflon and nonstick cookware, waterproofed shoes and clothes, carpets, upholstery, and some kinds of food packaging. (Colgate’s website describes its Total Dental Floss as a “single-strand Teflon fiber.”)
Firefighting foams used at airports and military bases also contain PFAS chemicals. The Department of Defense has identified 126 sites near military bases with PFAS in their drinking water sources. Dozens of municipalities near chemical factories that once made PFAS products are finding the compounds in the public water systems.
Philippe Grandjean, a professor of environmental health at Harvard who was not involved with the study, told BuzzFeed News in an email that he found the results meaningful, despite the possibility that survey participants could have been exposed to PFAS from other sources, too.
“Non-stick pans have [a] larger surface but we don’t chew on them like dental floss,” Grandjean said.
Rita Loch-Caruso, a professor of environmental health at the University of Michigan who was not involved with the study, pointed out that fluoride — which also contains fluorine — is sometimes added to dental products. “It would have been nice to see them discuss whether fluoride could have been contributing to the fluorine measurements on the floss,” she told BuzzFeed News.
Boronow said that none of the products were advertised to contain fluoride for dental health.
The survey included 178 women, 87 of whom were black and 91 non-Hispanic white. The authors noted that follow-up work should include other ethnicities.
The goal of the study, Boronow said, was to get a clearer idea of how people absorbed the chemicals. “Aside from people who have contaminated drinking water or are exposed to PFAS chemicals at work, we don’t know what the most important sources of exposure are,” she said.
Dan Vergano contributed reporting.
Investigational C-diff Treatment Granted Fast Track Designation
Investigational Clostridium difficile infection treatment granted Fast Track designation
Biopharmaceutical company focused on developing new antibiotics for difficult-to-treat bacterial infections, Acurx Pharmaceuticals announced today that the U.S. Food and Drug Administration has granted Fast Track designation for ACX-362E, an investigational new treatment for Clostridium difficile Infection (CDI). ACX-362E is a novel, oral antibiotic that recently entered Phase 1 development.
Image/CDC
ACX-362E is a novel, first-in-class, orally-administered antibacterial. It is the first of a novel class of DNA polymerase IIIC inhibitors under development by Acurx to treat bacterial infections.
“The FDA’s decision to grant Fast Track Designation for ACX-362E corroborates our effort to develop a new, highly innovative treatment option for patients with CDI, an area of significant unmet need,” said Robert J. DeLuccia, Co-Founder & Managing Partner of Acurx. “If approved, we believe our new antibacterial, ACX-362E, will be an important therapeutic alternative for patients with CDI. The Fast Track designation will allow Acurx to work more closely with the FDA to bring ACX-362E to physicians and patients as soon as possible.”
FDA Fast Track Designation is a process designed to facilitate the development and expedite the regulatory pathway of new drugs to treat serious or life-threatening conditions and that fill a high unmet medical need.
The CDC has reported that there are nearly 500,000 patients per year treated for CDI in the U.S. alone, with a recurrence rate approximated at 20% to 30%, with limited antibiotics available to treat patients with CDI.
OUTBREAK NEWS INTERVIEWS
Clostridium difficile awareness: A discussion with Steven LaRosa, MD
Coffee With the Supervisor: Lyme Disease
Coffee With the Supervisor: Lyme Disease
Published on Oct 5, 2018
Excellent round table discussion on all things Lyme. Many accepted myths discussed.
For more with Dr. Satalino: https://madisonarealymesupportgroup.com/2017/09/11/lyme-psychological-issues-dr-anna-satalino/
