Please see the following email thread directed to the attention of Mr. James Potter, Executive Vice President of The New Hampshire Medical Society. I await a response from my inquiry below which is asking why our public health officials are not interested in the number of lives ruined by Lyme disease. I remain cautiously optimistic that Mr. Potter will actually follow through with the promises he made below regarding the treatment of later-stage tick-borne diseases.
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: James Potter <James.Potter@nhms.org>, nhbidc@dhhs.nh.gov
Cc: tickbornedisease@hhs.gov (26 Undisclosed recipients)
Date: January 18, 2020 at 3:56 PM
Subject: RE: Follow-up from today's phone conversation
On Jan 17, 2019 James Potter wrote: “My understanding of the reason that TFNH has focused on only on prevention is because that is where they are most comfortable in disseminating information.”
Jim,
After reading through this email thread it sounds like the focus will remain on the acute stage of disease with emphasis on early treatment.
If there is no provision within a “public outreach program” to count the chronically infected/debilitated Lyme patient population then this exercise is little more than a continuation of the well-established con to deceive the American public. This out of sight, out of mind mentality has allowed the deception to proliferate because exposing the true numbers of patients disabled by Lyme disease would actually uncover the truth.
The real truth: Lyme is not easily treated and cured with a one-size-fits-all treatment approach and testing is no better than a coin toss.
Furthermore; the public has the right to know (In writing) that humans do not produce antibodies against Lyme disease 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.
Acknowledging and actually counting the horribly disabled exposes the lie.
Quote from Dr. Joseph Jemsek: “The lie is too big to confess.”
Source: Dr. Jemsek's Remarks To The Irish Parliament
https://jemsekspecialty.com/archive/2019/7/9/dr-jemseks-remarks-to-the-irish-parliament
With that said, I have drafted the attached questionnaire for surveilling the chronically ill Lyme patient population here in New Hampshire in order to gain a handle on the magnitude of the problem.
NEW HAMPSHIRE VOLUNTARY CHRONIC LYME DISEASE CASE REPORT FORM
The form was modeled after the NH DOH Lyme Case Report Form (Also attached) and from the following published study:
NH DOH Lyme Case Report Form
https://www.dropbox.com/s/w4h89pf1yrou4sg/lymediseasereport%20%281%29.pdf?dl=0
Chronic Lyme Disease: A Working Case Definition
Raphael B. Stricker and Melissa C. Fesler
https://thescipub.com/abstract/10.3844/ajidsp.2018.1.44
I would like to promote this action as voluntary in order to get a headcount and not to identify any patient while keeping it limited to one page. (No patient information for HIPPA privacy requirements.)
Since this would be voluntary as a tool for the NH Medical Society to gain an understanding of the magnitude of the problem, I’m hoping that the clinicians treating these patients won’t feel threatened.
These patients need to be recognized and counted Jim; it is the right thing to do.
If there is no intention to implement this action by the NH Medical Society I will need a detailed explanation for why the Society isn’t interested in knowing how many lives here in our state have been ruined by Lyme disease.
Respectfully Submitted,
Carl Tuttle
Cc: Elizabeth R. Daly, MPH Chief, Bureau of Infectious Disease Control
Tick-Borne Disease Working Group, Washington DC
____________________________________________________
On January 17, 2020 at 5:59 PM James Potter wrote:
Hi Carl,
Thanks for your follow-up message.
Yes, Tick Free NH (TFNH) has members of the NH Division of Public Health and other state agencies who participate on its Council, as well as the Medical Society now (even though were are not listed) for the last year. However, it is directly supported by the NH Charitable Foundation and staffed by the JSI Research & Training Institute, Inc. dba the Community Health Institute in Bow.
My understanding of the reason that TFNH has focused on only on prevention is because that is where they are most comfortable in disseminating information. As we discussed, it is our hope to develop with them a public outreach program to expands to include information on early intervention and early referral to specialists experienced in treating later-stage tick-borne diseases and disorders caused by the destructive bacteria.
There will be many challenges. But that is what we are committed to doing in addition to developing the continuing medical education we discussed.
Thanks for also re-sharing with me your earlier message to Beth Daly. Building capacity to treat the disabled Lyme patient population is one of our other challenges. We are actively working on a similar problem in building treatment capacity for patients with opioid use disorders (OUDs). Through a lot of hard work, we have been able to qualify over 700 physicians, APRNs and PAs in the last 3 years cobbling together a series of small grants. Still much more to do. But I am hopeful that as we move forward groups like the NH Charitable Foundation and perhaps some federal support can aid us in this mission for tick-borne diseases.
Jim
________________________________________________________
From: CARL TUTTLE [mailto:runagain@comcast.net]
Sent: Thursday, January 16, 2020 4:00 PM
To: James Potter
Cc: (2 Undiscloed recipients)
Subject: Follow-up from today's phone conversation
Jim,
Thank you for taking the time to talk with me today.
Tick Free New Hampshire is a website from the folks at the Department of Health and they are focused on prevention only…. Not interested in counting the number of disabled Lyme patients.
So once again, prevention although important, is not addressing all aspects of the disease.
I questioned Beth Daly (and carbon copied you and the NH Medical Society) about the deliberate avoidance of the horribly disabled.
As I mentioned in our phone call I'm going to respectfully hold your feet to the fire on including a method to survey and report the number of lives destroyed by this disease.
Here is the May 30th email thread with her short response:
From: CARL TUTTLE < runagain@comcast.net>
Sent: Thursday, May 30, 2019 8:42 AM
To: DHHS: NHBIDC < NHBIDC@dhhs.nh.gov>
Cc: (26 Undisclosed recipients)
Subject: Re: “Let's Talk Ticks” at Litchfield’s Public Library
To: Elizabeth R. Daly, MPH
Chief, Bureau of Infectious Disease Control
Dear Beth,
It is well known that untreated strep throat can progress to rheumatic fever, causing irreversible heart damage. Untreated syphilis leads to progressive disability and dementia, and untreated human immunodeficiency virus (HIV) infection progresses to AIDS with significant disability and death. 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 erythema migrans (Bulls-eye rash) misdiagnosis etc.?
Based on the email you sent yesterday (attached below) it would appear that the NH Department of Health has gone to great lengths to raise awareness to avoid this scenario. So obviously Lyme disease must be a serious life-altering/life-threatening disease because we don’t see the same DOH action for strep throat, tonsillitis, or dermatitis.
So why then is this class of disabled Lyme patient ignored by the NH Department of Health/CDC and left to fend for themselves?
Post Treatment Lyme Disease Syndrome (PTLDS) after early treatment and untreated Lyme of months, years or decades are two entirely different disease states; the latter being ignored for three decades. Patients who have had a prolonged exposure to the pathogen are almost always incapacitated as testimony is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin.
The number of these horribly disabled patients continues to grow but for some unknown reason this is of no interest for the New Hampshire Department of Health. Not recognizing Lyme as a disabling disease excludes these individuals from any disability compensation.
In summary: the health treat level for Lyme disease does not match patient experience and as long as you and the NH DOH continue to ignore these pleas to upgrade Lyme to Highest Alert then the citizens of New Hampshire will continue to experience unimaginable pain and suffering.
As spokesperson for the disabled Lyme community I am challenging the New Hampshire Department of Health to stop following this thirty year travesty of ignoring the disabled wrongly established by the CDC/IDSA and the seven academics that have controlled the Lyme disease narrative and are now defendants in a racketeering lawsuit in Texas District Court.
Court Docuument: https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0
Once again I am requesting a response to this inquiry and please do not circumvent the topic of this message which is the deliberate avoidance of the disabled Lyme patient population.
Respectfully submitted,
Carl Tuttle
Hudson, NH
Cc: -The New Hampshire Medical Society Advisory Council on Tick and Other Insect Borne Diseases
- Commissioner Meyers
-The Tick Borne Disease Working Group
-ADM Brett P. Giroir, M.D., Assistant Secretary for Health
-Rep. Howard Moffett sponsor of House Bill 490
Response from Beth Daly:
---------- Original Message ----------
From: "DHHS: NHBIDC" <NHBIDC@dhhs.nh.gov>
To: CARL TUTTLE <runagain@comcast.net>
Date: May 30, 2019 at 3:07 PM
Subject: RE: “Let's Talk Ticks” at Litchfield’s Public Library
Mr. Tuttle –
I have already provided a response to your inquiry. We do issue alerts on Lyme disease. We are not deliberately ignoring anyone. In public health, we do not provide direct medical care to individual patients. We provide education and prevention materials to the public.
Beth
Elizabeth R. Daly, MPH
Chief, Bureau of Infectious Disease Control
NH Department of Health and Human Services
29 Hazen Drive, Concord, NH 03301-6504
Phone: 603-271-4927 Fax: 603-271-0545
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