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

NH House Bill 490 and Serology for Lyme Disease

JAN 11, 2020 — 

Most of us involved in this scandal are familiar with the faulty/misleading testing algorithm for Lyme disease as it is the root cause of unimaginable pain and suffering. Delayed diagnosis and treatment leads to serious health consequences.

Feel free to share the letter below and attachments to the uneducated public who are in denial that this couldn’t possible happen to them.

——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov
Cc: (82 Undisclosed recipients)
Date: January 11, 2020 at 11:54 AM
Subject: NH House Bill 490 and Serology for Lyme Disease

To: The Tick-Borne Disease Working Group,

Please see the letter below addressed to the New Hampshire Medical Society regarding House Bill 490.

In order to cut down on email size I have provided Dropbox storage links for the attachments listed in this message.

Carl Tuttle

Lyme Endemic Hudson, NH


Letter to the New Hampshire Medical Society:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: james.potter@nhms.org
Cc: (28 Undisclosed recipients)
Date: January 10, 2020 at 11:19 AM
Subject: NH House Bill 490 and Serology for Lyme Disease

Jan 10, 2019

New Hampshire Medical Society
7 North State Street
Concord, NH 03301-4018
ATTN: James G. Potter, CAE, Executive Vice President

Dear Mr. Potter,

I have reviewed the amended version of HB490 calling for a commission to study the role of clinical diagnosis and the limitations of serological diagnostic tests and I have to tell you that all Tuttle family members did not meet the CDC’s criteria for positive test results on the only FDA approved testing algorithm for Lyme disease (2 out of 3 IgM bands and 5 out of 10 IgGbands) and yet all of us were horribly ill.

It is not necessary to meet these strict criteria as it was originally developed for surveillance/reporting purposes only but there is no disclaimer on the test to inform the physician that a negative test result does not necessarily mean that the patient does not have Lyme disease.

The confusion over this has caused untold pain and suffering as delayed diagnosis will lead to dire health consequences. The uneducated PCP will see “Negative” on the lab report and inform the patient that he or she does not have Lyme disease.

Had we not met Dr. Sam Donta of BU School of Medicine (Currently a member of the Tick-Borne Disease Working group) who spent a career studying Lyme disease, none of us would have been treated.

This is a serious problem!

For your review, I have attached a copy of my 2009 letter addressed to Salim E. Kabawat, M.D. Medical Director of Quest Diagnostics outlining the problems with current serology. Nothing has changed.

In addition, I am attaching a copy of my wife’s Western blot showing only one single positive test band and no disclaimer.

I mean no disrespect Mr. Potter but what we have here in New Hampshire (and across the country) is a plague of ignorance and House Bill 490 is looking to address this.

Included with this correspondence is a copy of a 2009 tick study here in New Hampshire conducted by UMass Amherst and you will see in the town of Litchfield, 77% of the ticks tested are carrying tick borne disease. You or a loved one is a single tick bite away from experiencing this travesty.

Respectfully submitted,

Carl Tuttle
Lyme Endemic Hudson, NH

Attachments:

1. 2009 letter addressed to Salim E. Kabawat, M.D. Medical Director of Quest Diagnostics

https://www.dropbox.com/s/rot8mvqxd1ol9e2/June%2017%20Quest%20Diagnostics%20Letter.doc?dl=0

2. Sample Western blot

https://www.dropbox.com/s/ppus0unm0j2oiff/Western%20Blot.pdf?dl=0

3. UMass Amherst Tick Study

https://www.dropbox.com/s/kvxnp7tffoy4yas/NH%20Tick%20StudyText%20added.doc?dl=0

Cc: Tick-Borne Disease Working Group, Washington DC

___________________
**Comment**
This letter points out an important issue that demands attention: current testing misses over half of all cases, yet doctors blithely and blindly continue to tell patients they don’t have Lyme disease when they test negative:  https://madisonarealymesupportgroup.com/2018/10/12/direct-diagnostic-tests-for-lyme-the-closest-thing-to-an-apology-you-are-ever-going-to-get/
Key quote:  “These serologic tests cannot distinguish active infection, past infection, or reinfection.”
The truth is, YOU CAN BE INFECTED and still test negatively.
In fact, one of the most experienced Lyme doctors in Wisconsin told me some of the sickest patients NEVER test positive.
Lyme/MSIDS is and always has been a clinical diagnoses.  This is why Dr. Horowitz’s MSIDS questionnaire is a far better indicator of infection than current serology:  https://madisonarealymesupportgroup.files.wordpress.com/2016/01/symptomlist.pdf
If you suspect infection, print and fill this out.  It is also scientifically validated:  https://madisonarealymesupportgroup.com/2017/09/05/empirical-validation-of-the-horowitz-questionnaire-for-suspected-lyme-disease/
Understanding symptomology is a must with tick-borne illness and the quicker medical professionals wake up to this fact, the better.