Archive for the ‘Testing’ Category

Seronegative Chronic Relapsing Neuroborreliosis

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24834661?

Seronegative Chronic Relapsing Neuroborreliosis

JUL 17, 2019 — 

The letter below was forwarded to the Tick-Borne Disease Working Group as a follow-up to the first letter sent to Auwaerter which can be viewed here: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24825076

Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861

WAKE UP AMERICA!

 

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, chris.smith@mail.house.gov
Cc: (98 Undisclosed recipients)
Date: July 17, 2019 at 11:49 AM
Subject: Re: Lyme disease often misdiagnosed, resulting in unnecessary antibiotics

To the Tick-Borne Disease Working Group,

Please see my second letter below (and attachment) to Dr. Auwaerter referencing Seronegative Chronic Relapsing Neuroborreliosis. 

-Carl Tuttle

2nd Letter to Auwaerter:

——- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: Paul Auwaerter <pauwaert@jhmi.edu>
Cc: psax@bwh.harvard.edu, jli@bwh.harvard.edu, cbusky@idsociety.org, tkobaya5@jhmi.edu, jmstiglich@healio.com, infectiousdisease@healio.com
Date: July 17, 2019 at 11:41 AM
Subject: Re: Lyme disease often misdiagnosed, resulting in unnecessary antibiotics

Lyme disease often misdiagnosed, resulting in unnecessary antibiotics
Kobayashi T, et. Open Forum Infect Dis. 2019;doi:10.1093/ofid/ofz299.

July 17, 2019

The IDSA Foundation
1300 Wilson Boulevard Suite 300
Arlington, VA 22209
Attn:  Paul Auwaerter, vice chair of the IDSA Foundation

Dear Dr. Auwaerter,

While you contemplate your response to my inquiry requesting grant money for the purpose of proficiency testing of direct detection methods for Borrelia (DNA Sequencing). I would like to point out the following 1995 case study from Stony Brook Lyme Clinic.

I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication.

Seronegative Chronic Relapsing Neuroborreliosis.  
https://www.ncbi.nlm.nih.gov/pubmed/7796837

Lawrence C.a · Lipton R.B.b · Lowy F.D.c · Coyle P.K.d

aDepartment of Medicine, bDepartment of Neurology, and cDivision of Infectious Diseases, Albert Einstein College of Medicine, and dDepartment of Neurology, State University of New York at Stony Brook, New York, NY., USA

Eur Neurol 1995; 35:113–117  (DOI:10.1159/000117104)

Abstract

We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.

________________________

This is not the only case where a negative antibody response was identified. In fact I have attached the following document referencing:

Seronegativity in Lyme borreliosis and Other Spirochetal Infections

https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

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

Your publication in Open Forum Infectious Diseases and the Healio article is suggesting that a patient couldn’t possibly have Lyme if they don’t test positive on the outdated two-tier testing algorithm. This is misleading to the reader and the medical community.

Please see the following article regarding the difficulty in diagnosing Lyme disease:

The Staggering Cost of Lyme Disease and Other Tick-Borne Illnesses

PR Newswire July 10, 2019

https://finance.yahoo.com/news/staggering-cost-lyme-disease-other-123600606.html

According to the survey:

-45% of patients needed more than three years to obtain the proper diagnosis

-65% of patients were forced to quit a job or cut back on their hours due to their symptoms

-24% of patients saw more than ten doctors before receiving a proper diagnosis

-86% of patients suffer from long-term side effects from not having been diagnosed sooner

Researchers hope that the survey will help educate the public on the risks associated with delaying testing or relying on old testing techniques. “In our view, many patients are missed because much of the testing recommended by general practitioners is based on technology from 25 years ago,” says Dr. Shah. “Science has progressed, and we can now give patients a much more accurate diagnosis than was available years ago.”

_________________________________

Dr. Auwaerter, how many Lyme patients were turned away from your clinic and left untreated because they did not test positive through unreliable serology?

It is time to move forward and find a better approach. Please stop this nonsense.

Sincerely,

Carl Tuttle

Lyme Endemic Hudson, NH

____________________

**Comment**

One of the best quotes on abysmal serology testing:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/

“Setting arbitrary level of antibodies to diagnose a disease that has not been amenable to Koch’s postulates seems open to question.  By the same token, ignoring antibody results unless they meet arbitrary levels seems suspect. The vast majority of patients in this series showed some WB antibody exposure, but many did not meet the arbitrary limits set….in our present state of knowledge, the diagnosis of chronic Lyme disease is a clinical one.  Many of the patients in this series have suffered serious ‘hurts’ when they have been told that they could not have LD because their WB did not meet arbitrary limits.”  – Dr. Waisbren (RIP)

 

Category:

Activism, Lyme, Testing

Cerebrospinal Fluid CXLC13 Indicates Disease Course in Neuroinfection: An Observational Study

https://www.ncbi.nlm.nih.gov/pubmed/30660201/

2019 Jan 19;16(1):13. doi: 10.1186/s12974-019-1405-8.

Cerebrospinal fluid CXLC13 indicates disease course in neuroinfection: an observational study

Pilz G1, Wipfler P2, Otto F2, Hitzl W3,4, Afazel S5, Haschke-Becher E5, Trinka E2, Harrer A2.

Abstract

BACKGROUND:

The chemokine CXCL13 is an intensively investigated biomarker in Lyme neuroborreliosis (LNB). Its role in other neuroinfections is increasingly recognized but less clear.

OBJECTIVE:

To determine the significance of CXCL13 in established central nervous system (CNS) infections other than LNB by matching cerebrospinal fluid (CSF) CXCL13 elevations with severity of the disease course.

METHODS:

We investigated 26 patients with bacterial (n = 10) and viral (n = 16; tick-borne encephalitis, n = 6; varicella zoster infection, n = 10) neuroinfections of whom CSF CXCL13 levels were available twice, from lumbar punctures (LP) performed at admission and follow-up. As outcome classification, we dichotomized disease courses into “uncomplicated” (meningitis, monoradiculitis) and “complicated” (signs of CNS parenchymal involvement such as encephalitis, myelitis, abscesses, or vasculitis). CXCL13 elevations above 250 pg/ml were classified as highly elevated.

RESULTS:

Eight of 26 patients (31%) with both bacterial (n = 4) and viral (n = 4) neuroinfections had a complicated disease course. All of them but only 3/18 patients (17%) with an uncomplicated disease course had CSF CXCL13 elevations > 250 pg/ml at the follow-up LP (p < 0.001). At admission, 4/8 patients (50%) with a complicated disease course and 3/18 patients (17%) with an uncomplicated disease course showed CXCL13 elevations > 250 pg/ml. All four patients with a complicated disease course but only one with an uncomplicated disease course had sustained CXCL13 elevations at follow-up. Patient groups did not differ with regard to age, time since symptom onset, LP intervals, type of infections, and anti-pathogen treatments.

CONCLUSION:

Our study revealed pronounced CXCL13 elevations in CSF of patients with severe disease courses of bacterial and viral neuroinfections. This observation indicates a role of CXCL13 in the CNS immune defense and points at an additional diagnostic value as biomarker for unresolved immune processes leading to or associated with complications.

Category:

Inflammation, Lyme, research, Testing, Viruses

Active Neuroborreliosis or Inflammation: Are the Diagnostic Guidelines at Stake? (You think?)

https://www.ncbi.nlm.nih.gov/pubmed/30556097/

2019 Jun;119(2):207-214. doi: 10.1007/s13760-018-01067-2. Epub 2018 Dec 17.

Active neuroborreliosis or inflammation: are the diagnostic guidelines at stake?

De Cauwer H1,2, Lagrou K3, Coeckelbergh E4,5, Bogaerts A6, Leenders J4, Vanneste D7,8.

Abstract

Neuroborreliosis can induce a variety of neurological syndromes: e.g., cranial neuritis, plexitis, radiculitis, meningitis, cerebellitis, … We report on five cases of patients with a diagnosis of neuroborreliosis based on clinical symptoms, serologic tests and MR imaging results. However, neither of them fulfils the diagnostic criteria for definite neuroborreliosis. Are the diagnostic criteria still valid or is there a need to revise them? Is our diagnosis correct? Are these cases post-Lyme auto-immune neuronal inflammation, and not due to still active spirochetal infection? Do we need to consider immunosuppressive therapy instead of third-generation cephalosporins?

______________

**Comment**

All I know is plenty of research has indicated persistent infection:  Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy

Also, not mentioned is the possible presence of other infections:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

Of course, the problem is that testing for ALL the coinfections that often come with Lyme is abysmal….

Will someone please do this very needed work?  https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/

Don’t you think this question of persistence has been asked for long enough?

Category:

Lyme, research, Testing

FREE Tick Testing – Adds Bartonella Pathogen Assay

https://www.prnewswire.com/news-releases/bay-area-lyme-foundation-tick-testing-program-adds-bartonella-pathogen-assay-300883339.html

Bay Area Lyme Foundation Tick Testing Program Adds Bartonella Pathogen Assay

– Nationwide Free Tick Testing Initiative Will Inform Citizen-Science Studies to Better Understand the Spread of Ticks Carrying Diseases Throughout U.S. –

NEWS PROVIDED BY

Bay Area Lyme Foundation

Jul 11, 2019,

SILICON VALLEY, Calif., July 11, 2019 /PRNewswire/ — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the relaunch of its nationwide free tick testing program, which will include an assay for Bartonella, a disease-causing pathogen carried by ticks. Based on the success of the Free Tick Testing Citizen Science program, Bay Area Lyme Foundation has significantly increased funding for the 2019 nationwide collection effort, adding an automated submission process and increased research support. Researchers anticipate this citizen- science program will enable the organization to unearth further discoveries.

Results of the first citizen-scientist study were published in the peer-review journals PLOS ONE in 2018, and International Journal of Health Geographics in 2019. The study, which evaluated the prevalence of disease-carrying ticks throughout the United States, and included a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico, led to the discovery of ticks capable of carrying Lyme and other tick-borne diseases in 83 counties, in 24 states, where these ticks had not been previously recorded. The program received a six-fold increase in tick submissions over initial estimates, representing unprecedented national coordination of a ‘citizen science’ effort and diagnostic investigation.

“The tremendous response to our initial collection program from residents all across the country has demonstrated a national desire for a greater understanding of tick-borne diseases, compelling our increased commitment,” said Linda Giampa, executive director at Bay Area Lyme Foundation. “Through a greater understanding of tick-borne disease risk across the U.S., we hope to better arm patients, clinicians and researchers with valuable insight in hopes of improved education, faster diagnosis, and more informed research toward making Lyme and other tick-borne illnesses easy to diagnose and simple to cure.”

As the only national free tick testing service, the program is designed to offer insights into the pathogens carried by ticks, and the results, in addition to any symptoms, should be discussed with a healthcare provider. Results from the tick test are not intended to be a diagnostic and individuals should discuss any symptoms or changes in health status with their physicians, as some tick bites will not transmit agents that cause disease.  Since the founding of the program in 2016, institutions and local government entities across the U.S. have been inspired to initiate similar free tick testing programs for the purpose of diagnostics and/or research.

Testing is available through a partnership with the Nieto Lab at Northern Arizona University, which will accept ticks from any state in the U.S.

  • Borrelia burgdorferi, which causes Lyme disease
  • Borrelia miyamotoi, which causes hard tick-borne relapsing fever
  • Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis
  • Rickettsia rickettsii, the agent of Rocky-mountain spotted fever
  • Babesia microti, a protozoan pathogen
  • Bartonella spp.

Results will be available within twelve business days of receipt based on estimated volumes. The data will be reported to the sender by email, as well as added to our national database, to better understand ticks and tick-borne diseases.

“We are investigating changing trends in tick-borne diseases, and hope that improved understanding of the geography of human exposures to ticks and pathogens will revamp current perceptions of disease risk and the ticks’ spatial distributions,” said Dan Salkeld, PhD, research scientist, Colorado State University, who will be involved in evaluating data obtained from this program for potential future research publications.

U.S. residents seeking more information should visit: https://www.bayarealyme.org/lyme-disease-prevention/tick-testing/

About Bartonella
Bartonella are intracellular parasites that are transmitted by the bite of infected Ixodes ticks to humans, and infect red blood cells, macrophages, and endothelial cells. Symptoms of bartonella may consist of swollen or enlarged lymph nodes and may cause fevers and, more rarely, eye disorders, or infections of the liver, spleen, or bones. Many patients also experience an inflamed blemish at the transmission site which looks like a red bump on the skin and then may develop into a large pimple. Neurological involvement may also occur. There is a great need for an effective diagnostic and treatment for bartonella, and currently the most reliable assay for bartonella infection is through polymerase chain reaction (PCR) in blood, spinal fluid, and tissue.

About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is the leading public not-for-profit sponsor of innovative Lyme disease research in the US. A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme Foundation collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The LaureL STEM Fund covers overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.

SOURCE Bay Area Lyme Foundation

Related Links

http://www.bayarealyme.org

___________________

**Comment**

YES! This is wonderful news. Now, it’s up to us to flood them with ticks.

The more data they have, the better. Let’s show authorities just how common Bartonella, Babesia, Lyme, RMSF, Anaplasmosis, and relapsing fever really are and why people in Lyme-land are so sick.

For more information on the diseases mentioned in this article, type the disease into the search bar on this website. Treatment suggestions are given as well.

Category:

Anaplasmosis, Babesia, Bartonella, Lyme, research, Rocky Mountain Spotted Fever, Testing, Tickborne Relapsing Fever, Ticks

Lyme Neuroborreliosis is a Severe & Frequent Neurological Disease in Mexico

https://www.ncbi.nlm.nih.gov/pubmed/30554857/

2018 Aug;49(6):399-404. doi: 10.1016/j.arcmed.2018.11.007. Epub 2018 Dec 13.

Lyme Neuroborreliosis is a Severe and Frequent Neurological Disease in Mexico.

Gordillo-Pérez G1, Solorzano F2, Cervantes-Castillo A3, Sanchez-Vaca G4, García-Ramirez R4, Díaz AM5, Muñoz O2, Torres J3.

Abstract

OBJECTIVE:

To describe clinical cases with neurological manifestations associated with Borrelia burgdorferi infection in a large cohort of children and adults from Mexico.

MATERIAL AND METHODS:

Patients with neurological manifestation (cranial neuritis, radiculoneuritis, meningitis and encephalomyelitis) were recruited in one pediatric and two general hospitals, during January 2006-December 2015. Blood and cerebrospinal fluid (CSF) samples were drawn from each patient at inclusion. IgM and IgG antibodies against B. burgdorferi were detected using a commercial ELISA test, and confirmed by Western-Blot test (WB) using three different antigens from Borrelia burgdorferi complex. Following CDC criteria were considered true cases with both positive tests.

RESULTS:

Of 606 patients recruited, 403 (66.5%) were adults and 203 (33.4%) children, 50.5% were male.

  • B. burgdorferi infection was diagnosed in 168 patients (27.7%), 97 adults, mean age 42 ± 14.7 years and 71 children, mean age 9.6 ± 5 years;
  • early disseminated disease occurred in 130 cases (77.4 %) and
  • chronic stage in 38 (22.6 %)
  • A previous tick bite was reported by 21% cases, and
  • 5% recalled an erythema migrans lesion
  • Polyradiculoneuropathy and encephalomyelitis were the most common manifestations, whereas
  • 14.8% presented an initial Guillain-Barré Syndrome
  • B. burgdorferi sensu stricto was identified in 142 (84%) cases,
  • B. garinii in 14 (8%),
  • B. afzelii in three, and
  • nine cases presented coinfection with two species

CONCLUSION:

Lyme neuroborreliosis is a frequent condition in patients with neurological diseases in Mexico.

_________________

**Comment**

Although a year old, utilizing even older data, this is HUGE, and I’m sure has only gotten worse. Most don’t even consider Lyme disease in South America, much less a severe and frequent disease.

Please note that they only considered people positive IF they tested positive on the abysmal 2-tiered CDC testing that misses over half of all cases:  https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/  It’s interesting to me that they describe “clinical” cases of neurological symptoms, yet continue to utilize abysmal testing as their means of diagnosis. What a shame.

How many infected Mexican patients were missed due to poor testing?

Also, please note only 5% recalled an EM rash. This criteria also needs to be thrown to the way-side as a standard for diagnosis:  https://madisonarealymesupportgroup.com/2019/03/26/formally-challenging-cdc-advice-on-lyme-disease-rashes/  Again, if you are lucky enough to get the EM rash, YOU HAVE LYME DISEASE; however, even if you don’t have the EM rash, you might STILL HAVE LYME DISEASE.

Notice nearly 15% presented with an initial Guillain-Barre Syndrome as well as the fact 9 cases had coinfection with TWO species of borrelia.

For more on Lyme in South America:  https://madisonarealymesupportgroup.com/2018/02/06/lyme-in-the-southern-hemisphere-sexual-transmission/

https://madisonarealymesupportgroup.com/2018/12/07/first-report-of-bb-antibodies-in-south-american-veterinarians/

Also, please remember Lyme (borrelia) is only one of many. Patients are typically coinfected with numerous other pathogens:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  If all they used was CDC 2-tiered Lyme testing, not only did they miss tons of patients who weren’t “positive enough,” yet still infected, they also missed the fact many were probably infected with other pathogens.

 

Category:

Lyme, research, Testing