Tag Archives: Lyme Disease

Letter to Mary Jo M Dales – Editor IMNG Medical Media

Mary Jo M. Dales

Editor in Chief

IMNG Medical Media

Dear Mary Jo,

In Evidence-based medicine, (EBM) medical treatment remains subject to patient values so why do the CDC and IDSA refuse to listen to the patient voice concerning Lyme disease?; to intentionally avoid the “inconvenient truths”.

The following “inconvenient truths” are heard at Lyme disease support group meetings:

1. The vast majority of patients do not develop the bulls-eye rash.

2. The two stage testing (Elisa followed by Western blot) recommended by the CDC and IDSA is not working. Most patients are negative by Elisa but positive on Western blot.

3. Patients are often ping ponged through the medical community for years before obtaining a diagnosis due to the insufficiently educated (confused) medical community regarding the diagnosis of Lyme disease.

4. Short term treatment of antibiotics as recommended by the IDSA does not address the late stage Lyme patient and is less than adequate for the acute stage.

5. Lyme patients are misdiagnosed with the chronic diseases of our time; Multiple Sclerosis, Lupus, Lou Gehrig’s, disease, Parkinson’s, Alzheimer’s disease, Chronic Fatigue Syndrome and Fibromyalgia.

6. Lyme patients are never informed of the two standards of care for treating the disease; IDSA vs. ILADS.

Deliberately avoiding the inconvenient truths has been an effective campaign to mislead a medical community and the public but Senator Blumenthal believes Lyme patients should have a voice and is currently collecting testimonies from across America. Ignore patient complaints and you can deny the late stage Lyme epidemic indefinitely.

When obtaining medical advice for Lyme disease be sure to ask the question, “Have you ever treated the late stage Lyme patient?

Regards,

Carl Tuttle

Comparison of Lyme Disease Prevalence and Disease Reporting in an Endemic Area

http://article.sapub.org/10.5923.j.microbiology.20130306.11.html#Sec5

Journal of Microbiology Research

doi:10.5923/j.microbiology.20130306.11

Holly Ahern Biology Department, State University of New York at Adirondack, Queensbury, NY, 12804, USA

Carl Tuttle’s summary of this significant study:

The Lyme community has been reporting a completely different set of numbers in regards to the statistics of this disease which vary greatly from what the CDC has published and conveyed to the medical community.

Professor Ahern’s survey results were tabulated from a randomly selected population in a Lyme endemic region with no bias in this group to influence results.

2% of the surveyed population reported a diagnosis of Lyme disease. 50% of respondents diagnosed with Lyme disease did not recall a tick bite, 33% developed the bulls-eye rash and 50% remained ill after antibiotic treatment.

In contrast to those numbers the CDC claims that 80% of Lyme patients develop the bulls-eye rash and only a small subset of patients has persistent symptoms.

It was concluded that Lyme disease reported at just 2% of the population for these three counties represents a possible 7,000 cases at the time of the survey but only 1,930 cases have been reported to the CDC over a nine year period (2002-2011). If you use the 2% conservative number there should have been 63,000 cases reported in just these three counties alone.

In addition, 16% of respondents experienced cardiac, rheumatologic, or neurological symptoms consistent with late-stage Lyme disease.

Comparing late-stage Lyme symptoms to the general population was a brilliant idea because we believe the vast majority of Lyme patients are already in the healthcare system being treated for everything else but Lyme.

Chronic disease is a valuable commodity and there is a high probability that undiagnosed Lyme disease represents a good portion of that that revenue stream.

Please continue to forward this petition to educate others!

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

Lyme disease: a review of its epidemiology, evaluation, and treatment.

From: “Carl Tuttle”
Sent: Wednesday, February 25, 2015 7:53:56 PM
Subject: Lyme disease: a review of its epidemiology, evaluation, and treatment.

Psychosomatics. 2014 Sep-Oct; 55(5):421-9. doi: 10.1016/j.psym.2014.02.006. Epub 2014 Apr 19.

Lyme disease: a review of its epidemiology, evaluation, and treatment.

Gerstenblith TA, Stern TA.
Consultation Psychiatry, Massachusetts General Hospital, Boston, MA; Harvard Medical School, Boston, MA; Avery D. Weisman Psychiatry Consultation Service, Massachusetts General Hospital, Boston, MA. Electronic address: TStern@Partners.org.

http://www.ncbi.nlm.nih.gov/pubmed/25016354

Feb 25, 2015

PSYCHOSOMATICS

The Journal of Consultation and Liaison Psychiatry

James Vrac, Executive Director

Editor-in-Chief: Theodore A. Stern, MD, FAPM,

Dear Executive Director Vrac,

I would like to call attention to the article published in Psychosomatics coauthored by Psychosomatics Editor-in-Chief: Theodore A. Stern, MD, FAPM.

It is difficult to accept that this article was approved through a “pier-review process” as there appears to be a bias viewpoint of Lyme disease with a great deal of missing and or misleading information.

For example,

Misleading information:

#1 “The transmission of the spirochete requires that the tick be attached to the new host for24–48 hours.”

Stricker et al describes three cases in which transmission of Borrelia burgdorferi, appears to have occurred in less than 24 hours.[1] Dr. Willy Burgdorfer (discoverer of the Borrelia burgdorferi spirochete) was quoted during a conference at Bard College in 1999 stating that about 5-10% of ticks that are carrying Lyme disease have a systemic infection and have the disease in their saliva and can transmit it as soon as they bite. He said, “There is no safety window.”

#2 “….erythema migrans rash occurs in more than 80% of individuals with Lyme disease”

The State of Maine Department of Health and Human Services has documented on average 48.25% incidence of rash-related Lyme over the last 4 years (See page 3 of each official report.) [2] [3] [4] [5] Dr. Gensheimer served as an Epidemic Intelligence Service Officer with the national Centers for Disease Control and Prevention prior to her assuming her current position in Maine. The 80% number is pure disinformation propagated by the CDC.

#3Selecting which individuals are appropriate for serologic testing is important, as testing helps support or refute the clinical diagnosis, but it can neither establish nor exclude the diagnosis of Lyme disease.” “Current serologic testing assays are unable to distinguish between active and inactive infection.”

So in summary there is no laboratory test to gauge treatment failure or success. The current two-tier FDA approved testing method insures that persistent infection will never be identified. Per the U.S. Food and Drug Administration website [6] there appears to be seven pages of patient complaints regarding faulty/misleading Lyme disease antibody testing and subsequent misdiagnosis. Lyme disease antibody tests landed a sixteen year old Massachusetts boy in a psychiatric ward.[7] The misdiagnosis resulted from faulty/misleading two tier serology as this boy’s Western blot did not meet the five out of ten band IgG criteria for positive results. The physician responsible for the misdiagnosis is regarded as an “expert” in Lyme disease. In addition, this case shows that the “one-size-fits-all” IDSA treatment guideline was a complete failure.

Incidentally, China’s criteria for a positive Western blot diagnosis of Lyme disease were established with only one IgG band and one single IgM band.[8]

#4 Serologic testing is more reliable in later-stage disease.”It is rare to have CSF antibodies without serologic ones, so the absence of serologic antibodies indicates that Lyme disease is not present.”

Seronegativity in Lyme borreliosis; 103 Peer-Reviewed Studies [9]

“If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.”

#5 “…there is no evidence that B. burgdorferi infection persists in humans after a course of antibiotic therapy”

Persistent Lyme infection; 273 Peer-Reviewed Studies [10]

“In 1991 the Lyme disease organism, Borrelia burgdorferi, was grown from the cerebrospinal fluid of my patient Vicki Logan at the Centers for Disease Control in Fort Collins, Colorado despite prior treatment with intravenous antibiotics. Her case made the front page of the New York Times Science Times in August of 1993.” -Kenneth Liegner, MD [11]

Vicki Logan’s CDC Fort Collins Positive CSF Culture Report [12]

Vicki Logan/Poughkeepsie Journal article challenging CDC treatment guidelines [13]

#6 “Multiple patient advocacy groups that have encouraged patients (many of whom had negative results on serologic testing) to think that they have chronic infections have flourished”

Misinterpretation of laboratory results is the main reason why the medical community is dismissive of patients with Lyme disease and their symptoms. Faulty diagnostic tests create confusion, causing physicians to miss the small period in which they can give successful short-term treatment. As a result, many patients have late-stage Lyme disease. Since we only test for antibodies against the infection and not the bacteria itself, we have no way to rule out active, continuing infection.

If the Infectious Diseases Society of America and the Centers for Disease Control and Prevention are correct with their single-treatment approach for all stages of Lyme disease and two-tier method of testing, why do we have so much legislation involving Lyme disease? [14]

#7 “Some have even encouraged legislative efforts to subvert evidence-based recommendations and demand long-term antibiotic treatment owing to persistent infection.”

Texas Senator Chris Harris says he was severely affected by the disease, but “got a lucky break.” His doctor, constrained by a disciplinary board that limited antibiotic use for tick-borne illness to 1 month or less, arranged for 17 physicians to take turns writing prescriptions for Sen. Harris’s treatment. “As a Lyme disease survivor,” says Sen Harris, “I know how important the correct treatment can be. This bill is a vital step forward in properly treating those who have this disease.” [15]

_________

Here are some additional studies to consider: (Missing from the Gerstenblith and Stern article)

Congenital Transmission of Lyme: 28 Peer-Reviewed Studies [16]

Case report of persistent Lyme disease from Pulaski County, Virginia [17]

Chronic Borrelia burgdorferi infection: a case report [18]

As the reader reviews the article by Gerstenblith and Stern one might begin to question if it was written as a playbook on how to avoid legal accountability for misdiagnosis and perhaps should have been titled “Willful Ignorance for Beginners” In the tragic case of the Lyme patient who committed suicide, prescribing steroids to a patient with infection further suppressing the immune system, certainly led to the demise of this patient.

In conclusion:

We have been dealing with an antibiotic resistant superbug cleverly concealed to promote vaccine development. A preventive vaccine for Lyme disease would not satisfy the FDA if a chronic persistent infection and seronegative disease exist.[19] Post-treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure.

We need to ask the question, “Why are the pier-reviewed studies, case reports and information I provided missing from the Gerstenblith and Stern article and what was the incentive for promoting the existing dogma? Was there influence (bias) by a colleague at Mass General Hospital inappropriately influencing this article?

Respectfully submitted,

Carl Tuttle,

Hudson, NH

References



[1] Clinical evidence for rapid transmission of Lyme disease following a tickbite

http://www.dmidjournal.com/article/S0732-8893(11)00415-9/abstract

[2] Report to Maine Legislature Lyme Disease February 2009

http://www.maine.gov/dhhs/reports/lymereport.pdf — 2009, 59%

[8] A Study of the Technique of Western Blot for Diagnosis of Lyme Disease caused by Borrelia afzelii in China

http://www.ncbi.nlm.nih.gov/pubmed/23425802

[9] Seronegativity in Lyme borreliosis: 103 Peer-Reviewed Studies

http://www.lymeinfo.net/medical/LDSeronegativity.pdf

[10] Persistent Lyme infection: 273 Peer-Reviewed Studies

http://home.comcast.net/~runagain/Persistence%20of%20Lyme%20Disease.doc

[12] Vicki Logan’s CDC Fort Collins Positive CSF Culture Report

http://home.comcast.net/~runagain/Logan%20CDC%20Fort%20Collins%20Positive%20CSF%20Culture%20Report.jpg

[14] Letter to the Editor, The Lancet Infectious Diseases Published May 2012

http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70054-3/fulltext

[15] Texas legislature passes Lyme bill recognizing long-term antibiotic treatment as option for persistent disease

http://www.prohealth.com/library/showarticle.cfm?libid=16308

[16] Congenital Transmission of Lyme: 28 Peer-Reviewed Studies

http://home.comcast.net/~runagain/Congenital%20Transmission%20of%20Lyme.doc

[17] Case report of persistent Lyme disease from Pulaski County, Virginia

http://www.dovepress.com/getfile.php?fileID=18365

[18] Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html

[19] Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

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

Cc: to Elsevier’s senior management team

Ron Mobed, Chief Executive Officer

Adriaan Roosen, Executive Vice President, Operations

Mark Seeley, Senior Vice President and General Counsel

Youngsuk “YS” Chi, Chairman

Legislators:

Sen. Richard Blumenthal

Sen. Terry Gipson

Sen. Kemp Hannon

Sen. John Bonacic

U.S. healthcare providers’ experience with Lyme and other tick-borne diseases

Carl Tuttle
Hudson, NH 03051Letter to the Editor, The Lancet Infectious Diseases Published May 2012
U.S. healthcare providers’ experience with Lyme and other tick-borne diseases

http://www.sciencedirect.com/science/article/pii/S1877959X14000429

Meghan E. Brett, Alison F. Hinckley, Emily C. Zielinski-Gutierrez, Paul S. Mead

Division of Vector-Borne Diseases,
Centers for Disease Control and Prevention,
Fort Collins, CO, USA
Attn: Alison F. Hinckley, Corresponding author

Dear Alison F. Hinckley,

In reference to the abstract listed in the subject line of this email; “four questions” about tick-borne diseases added to the 2009 Docstyles survey, I would like to call attention to question number two below.
1. Diseases encountered
2. Management of patients with early Lyme disease
3. Provision of tick-bite prophylaxis
4. Sources of information on tick-borne diseases

For some unknown rationale the CDC appears to be fixated on the acute or early stages of Lyme disease. Is this the only stage of the disease that the CDC believes physicians routinely encounter?
Please refer to the following study:

Comparison of Lyme Disease Prevalence and Disease Reporting in an Endemic Area
50% of respondents diagnosed with Lyme disease did not recall a tick bite, only 33% developed the bulls-eye rash and 50% remained ill after antibiotic treatment.
With that set of data most Lyme patients miss the narrow window of opportunity to treat the early stages of the disease. What questions have you asked the 2000 healthcare providers in the Docstyles Survey regarding disseminated or late stage Lyme disease?

There is absolutely no medical training whatsoever for the later stages of this disease so patients are often ping ponged though the medical community for years or decades before obtaining a late stage Lyme diagnosis usually ending in disability.

The CDC recently reported three cases of sudden cardiac death due to Lyme Carditis:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm
Three seemingly healthy young patients dropped dead of heart failure and no one suspected an infection until a pathologist readying heart tissue for a possible transplant noticed something wrong. It is important to recognize here that the cause of death was only identified due to the fact that the three Lyme patients were potential organ donors otherwise these cases would not have been identified or reported. None of the patients had evidence or a known history of erythema migrans (bulls-eye) rash. Our blood supply is not screened for Lyme disease so you have to ask the question, “How many seemingly healthy blood donors are carrying Lyme disease?

Late stage Lyme disease is an epidemic here in New Hampshire with a medical community practicing willful ignorance as it has become blatantly obvious that the CDC is only concerned with the acute stage of the infection while turning a blind eye to the more serious and life threatening stages of Lyme disease.

Respectfully submitted,

Carl Tuttle

Hudson, NH 03051

Lyle Petersen’s letter addressed to Carl Tuttle on Feb 15, 2012

From Lyle Petersen’s letter addressed to Carl Tuttle on Feb 15, 2012:

“We welcome the opportunity to respond to a statement in one of your letters, which repeats a common misrepresentation of the facts regarding CDC’s work in development of Lyme disease diagnostics. In your letter you state, “Those of us who have been harmed by the two tier testing algorithm find it a conflict of interest when the Director of the CDC’ strongly recommends’ only FDA-approved antibody tests for the diagnosis of Lyme disease especially when employees of the CDC (Barbara Johnson) hold patent interests in these faulty tests.” Your allegation that CDC program staff, including Dr. Barbara Johnson, hold patents on Lyme diagnostics and/or have financial conflicts of interest is false”

“More than a decade ago, Dr. Johnson was listed as an inventor on two patent applications and foreign filings related to specific antigens of Borrelia burgdorferi. These applications were made in accordance with government policy to protect the investment of taxpayers in government directed research. [??? Emphasis added]

Subsequent work indicated that these antigens were not as diagnostically useful as alternatives discovered by others, such as the C6 peptide. Consequently, both patent applications and their associated foreign filings were abandoned in February, 1997 and November, 2003. Dr. Johnson never received any payments related to these applications, and she does not hold patents that could generate such payments. She is not an inventor of the C6 peptide assay, as alleged by some, and receives no royalties from this invention. In fact, no CDC employees have ever received payments, royalties, or consulting fees for any activity related to commercial tests or vaccines for Lyme disease.”

The entire letter is posted here: (free to distribute)

http://home.comcast.net/~runagain/Director Lyle Peterson letter.pdf

Carl Tuttle follow-up letter to Mary Beth in response to Lyle Petersen’s “opinion” piece to the Poughkeepsie Journal’s interest in reporting on Lyme disease.

Valley-View-Long-term-antibiotics-not-warranted

Poughkeepsie Journal

85 Civic Center Plaza

Poughkeepsie, NY 12601

Attn: Mary Beth Pfeiffer

Dear Mary Beth,

Thank you for your continued efforts in covering the Lyme disease epidemic. In reference to the recent reply from the CDC’s Lyle R. Petersen I would like to point out that once again (as always) there is an emphasis on the acute stage of the disease.

I fall under the category of patients who had a “prolonged exposure to the organism prior to the initial diagnosis and antibiotic treatment of Lyme disease” as it took twelve years to obtain a diagnosis. Late stage Lyme disease does not respond well to antibiotics and it is this stage of the disease where “elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”

It is blatantly obvious that individuals who control public health policy for Lyme disease are either incredibly incompetent or committed to precisely what has been orchestrated to deny the late stage Lyme epidemic seen all across this nation.

Case in point: New York Medical College’s Lyme diagnostic center. (Gary Wormser’s location and co-author of the insurance friendly IDSA treatment guidelines) Below is a copy of their home page. Apparently Late Stage Lyme doesn’t exist as it is not listed on their website, additional evidence of the ongoing/blatant denial of the late manifestation of the Lyme disease epidemic.

Lyme Disease Diagnostic Center at New York Medical College

http://www.nymc.edu/LDDC/index.html

Background and Mission Statement: Established in 1989, the Lyme Disease Diagnostic Center is staffed by experienced physicians and nurses with special expertise in the diagnosis and treatment of persons 18 years and older with: – Tick bites – Early/Acute Lyme disease – Anaplasmosis (Ehrlichiosis) – Babesiosis ——————————————————- Since we only test for antibodies against the infection and not the bacteria itself, we have no way to rule out active, continuing infection (until now) which has been ideal for the “chronic Lyme” denialist camp headed up by Alan Steere and colleagues.

His nearly forty year old “theory” (Infection-induced autoimmunity) has yet to be substantiated but plays a large role in the treatment and insurance reimbursement denial of countless patients across the country. The denial of this epidemic and refusal to reimburse for treating persistent infection has caused untold pain and suffering not only in New Hampshire but across the nation.

Johns Hopkins published a study that followed patients who were treated from an acute Lyme disease stage but went on to develop debilitating symptoms after the standard IDSA treatment protocol. 35% of patients met the definition of post-Lyme syndrome 6 months after treatment and as many as 45% with one major symptom.

I have suggested to Dr Aucott he test these patients using Advanced Laboratory Services’ Borellia Culture test.

We now have proof that chronic Lyme exists through Advanced Laboratory Services’s Borrellia culture test as the laboratory is reporting positive cultures in 80% of symptomatic post treatment Lyme patient specimens so why is the CDC in no rush whatsoever to embrace this technology? Because the true epidemic and deceitful handling of late stage Lyme disease will finally be exposed!

Sincerely, Carl Tuttle