The following petition update by Lyme advocate Carl Tuttle is about this recent publication: https://www.frontiersin.org/articles/10.3389/fmed.2020.00057/full In it, the authors discuss the subgroups of those who go on to develop persisting symptoms, as well as the continuing controversy in medicine over this disabling disease(s). The authors present both sides of the fence and state:
However, ILADS CLD is a symptom-based definition and therefore ongoing infection is difficult to assess in individual patients with no currently available biomarker test, and given the large degree of symptom overlap between CLD and other illnesses.
This is important, as the IDSA on the other side of the fence wants to define everything by testing – which research has proven to be abysmal. It’s important for medical professionals to remember that the criteria for reporting Lyme disease is extremely stringent and that even the CDC states diagnosis should be clinical. Their own website indicates that doctors should be looking for signs, symptoms, and exposure. Then, it says “results of laboratory testing when indicated.” https://www.cdc.gov/lyme/diagnosistesting/index.html Regarding testing, you’d have to have your head under the sand to not know it misses over half of all cases, and not to mention takes precious time to develop antibodies for the test to even pick it up – which means the patient, if it’s Lyme, will worsen and be added to the ever growing large group with persisting symptoms. https://madisonarealymesupportgroup.com/2018/10/12/direct-diagnostic-tests-for-lyme-the-closest-thing-to-an-apology-you-are-ever-going-to-get/
“Insanity is doing the same thing over and over and expecting different results,” so why on earth would a doctor WAIT when the signs, symptoms, and exposure indicate a Lyme disease infection?
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25808085?
Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease
FEB 26, 2020 —
Today’s letter…….
———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, jaucott2@jhmi.edu
Cc: (98 Undisclosed recipients)
Date: February 26, 2020 at 9:44 AM
Subject: Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease
Frontiers in Medicine
Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease
Alison W. Rebman and John N. Aucott*
https://www.frontiersin.org/articles/10.3389/fmed.2020.00057/full
Feb 26, 2019
Johns Hopkins Lyme Disease Clinical Research Center
At Greenspring Station Joppa Concourse
2360 W. Joppa Rd, Suite 320
Lutherville, MD 21093
Attn: John N. Aucott, M.D.
Dr. Aucott,
The content of this letter should not be misconstrued as disrespectful.
As someone whose entire family with firsthand experience of the late stage disabling effects of Lyme, it becomes crystal clear when reading your manuscript that we don’t know how to treat Lyme disease. And yet, state medical boards will go after those clinicians who are attempting to help these patients: (Past IDSA president Paul Auwaerter testified against this doctor)
Before the Virginia Board of Medicine
In RE: Leila Haddad Zackrison, M.D.
Order of Summary Suspension
http://www.dhp.virginia.gov/Notices/Medicine/0101045689/0101045689Order09122019.pdf
I stopped reading your publication at page three simply because it’s the same information that we have seen over and over and over and over again for the past four decades.
The suppression of a mountain of evidence identifying persistent infection after extensive antibiotic treatment has misclassified this disease as a low-risk and non-urgent health threat.
The deliberate avoidance of the horribly disabled allows the CDC to ignore public outcry:
From your publication:
“….the CDC does not track disease outcomes or cases of persistent symptoms (34). Estimating the population-level prevalence of persistent symptoms following Lyme disease is challenging due to this lack of standardization or consensus in operationalizing a case definition.”
If we’re not counting the number of lives ruined by the disease we can continue the well-established racketeering scheme indefinitely.
Until those responsible for this health disaster are removed from positions of authority we will have another decade of unimaginable pain and suffering.
We have a public health emergency that requires a response on the level of a Manhattan Project [1] as patient testimony all across America (and the globe) is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin.
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 misclassified as a simple nuisance disease.
Lyme disease is a 21st Century incurable plague hidden in plain site as we are dealing with an antibiotic resistant/tolerant superbug and it is time to acknowledge the severity of this crippling disease.
Respectfully Submitted,
Carl Tuttle
Lyme Endemic Hudson, NH
Reference:
1. Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker, Lorraine Johnson
Published: January 02, 2014 DOI: 10.1371/journal.ppat.100379
http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796
In summary, preliminary studies from the CDC indicate that the Lyme disease epidemic has reached an unprecedented level with at least 300,000 people and as many as one million people, a majority of them women and children, diagnosed with Lyme disease each year in the United States. The staggering magnitude of the epidemic should prompt the CDC to show leadership in developing new guidelines for the diagnosis and treatment of Lyme disease. A coordinated “Manhattan project” similar to the attack mounted against the HIV/AIDS epidemic is urgently needed to address the serious worldwide threat of Lyme disease.
_______________
**Comment**
While Rebman and Aucott respectfully present both sides of the controversy, I agree with Tuttle that nothing has been done for the sickest patients. I also realize from a researcher’s perspective that the PTLDS group is the easiest to study as the parameters are extremely narrow and defined. The problem is, the sickest patients don’t fit into this group yet continue to suffer – with nobody studying them.
We desperately need researchers to dig into this group of patients that is growing exponentially by the minute: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/
According to microbiologist Holly Ahern,
60% go onto develop chronic/persistent symptoms.
That’s nothing to sniff at.
