Archive for the ‘Testing’ Category

17-Year Old Dies From Lyme Carditis

https://danielcameronmd.com/lyme-disease-podcast-17-year-old-young-man-dies-from-lyme-carditis/

LYME PODCAST: 17-YEAR-OLD YOUNG MAN DIES FROM LYME CARDITIS

Lyme Disease Podcast: 17-year-old young man dies from Lyme carditis

Welcome to an Inside Lyme case study. I find that the best way to get to know Lyme disease is through reviewing actual cases. In this case study, I will be discussing a 17-year-old young man who died of Lyme carditis. This case series will be discussed on my Facebook and made available on podcast and YouTube.

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This case was discussed in the journal Cardiovascular Pathologist written by Yoon and colleagues in 2015. The background for this case was published in the Poughkeepsie Journal.

He was a high school honor roll student who aspired to be an environmental engineer and loved the outdoors. He had just returned home from a two-week stay at a camp in Rhode Island, a state that is endemic for Lyme disease when he fell ill. He initially was ill for 3 weeks with a viral syndrome with a sore throat, cough, and occasional fever.

His doctor initially saw him for “nonspecific symptoms of upper respiratory tract infection, fever, malaise, and body aches.” writes Yoon. His tests were negative for strep, Lyme disease, and anaplasmosis. He subsequently developed diarrhea, lightheadedness, and photophobia.

“However, 12 days after his visits, he was found lying unresponsive on his lawn.” writes Yoon. Within hours he passed away,

While Lyme carditis may be rare, this young man’s tragic death illustrates the potential dangers of relying on serology tests to diagnose and treat Lyme disease. CLICK TO TWEETThe autopsy showed evidence of Lyme disease. The autopsy showed an enlarged heart. The spirochetes that cause Lyme disease were found in the young man’s fresh liver and myocardial tissue. There were also evidence of these spirochetes in the heart, lung, and brain tissues using immunohistochemistry staining and polymerase chain reaction (PCR) tests.

The ELISA and Western blot IgM tests that had been negative while the young man was alive were now positive for Lyme disease. The cause of death was fatal Lyme carditis.

The authors highlighted the dangers of relying on laboratory tests. The authors write,

“While Lyme carditis may be rare, this young man’s tragic death illustrates the potential dangers of relying on serology tests to diagnose and treat Lyme disease. It also underscores the ongoing confusion among clinicians over the accuracy and reliability of such tests, specifically the ELISA and Western blot.”

What can we learn from these cases?

  1. Lyme carditis can be fatal.
  2. Lyme carditis can occur in individuals with a negative test.

What questions does this case raise?

  1. Would the treatment have been effective if the young man was treated clinically?

He had the typical symptoms associated with Lyme – fatigue, headaches, body aches, GI disruptions, fevers, light sensitivity – and he had visited a Lyme endemic region with a high probability for exposure to ticks. Furthermore, he lived in Dutchess County, New York, an area that’s endemic for Lyme disease with an estimated 50% of deer ticks infected with the Lyme organism.

TREATING TICK-BORNE DISEASE IN MY PRACTICE

In my practice, each individual requires a careful assessment. That is why I order tests a broad range of tests including blood counts, liver and kidney function, thyroid disease, lupus, and rheumatoid arthritis in addition to tests for tick borne infections. I also arrange consultations such as neurologists, rheumatologists, and ophthalmologists.

I treat adolescents and adults using clinical judgment if tests are negative.

We need more doctors with skills diagnosing and treating Lyme disease if the tests are negative. We also need to give doctors the freedom to treat these difficult cases without undue interference by colleagues, insurance companies, medical societies, and medical boards.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Family tells story of teen’s death to raise awareness about tick-borne virus. From the Poughkeepsie Journalat https://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/27/lyme-joseph-elone/6957983/.  Last reviewed 1/11/20.
  2. Yoon EC, Vail E, Kleinman G, Lento PA, Li S, Wang G, Limberger R, Fallon JT. Lyme disease: a case report of a 17-year-old male with fatal Lyme carditis. Cardiovasc Pathol. 2015 Sep-Oct;24(5):317-21.
  3. Molins CR, Ashton LV, Wormser GP, Hess AM, Delorey MJ, Mahapatra S, Schriefer ME, Belisle JT. Development of a Metabolic Biosignature for Detection of Early Lyme Disease. Clin Infect Dis. 2015 Mar 11.

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**Comment**

This study highlights numerous topics that scream for attention:

  • Doctors still diagnosing Lyme based on abysmal testing rather than clinically
  • Doctors still diagnosing patients with ANYTHING other than Lyme
  • Patients presenting with hallmark Lyme/MSIDS symptoms with strong tick exposure yet doctors still ignoring it all
  • Lyme kills

For more:  https://madisonarealymesupportgroup.com/2019/06/04/how-vector-borne-diseases-impact-heart-health/

https://madisonarealymesupportgroup.com/2019/03/10/when-lyme-hurts-your-heart-warning-signs-solutions/

https://madisonarealymesupportgroup.com/2019/02/21/diagnosis-treatment-of-lyme-carditis/

https://madisonarealymesupportgroup.com/2018/02/22/new-lyme-cme-course-available-lyme-carditis-more-than-blocked-beats/

 

Category:

Heart Issues, Lyme, research, Testing

Borrelia Prevalence & Species Distribution in Ticks Removed From Humans in Germany

https://www.ncbi.nlm.nih.gov/pubmed/31987819

2020 Mar;11(2):101363. doi: 10.1016/j.ttbdis.2019.101363. Epub 2019 Dec 23.

Borrelia prevalence and species distribution in ticks removed from humans in Germany, 2013-2017.

Springer A1, Raulf MK2, Fingerle V3, Strube C4.

Abstract

Lyme borreliosis caused by spirochaetes of the Borrelia burgdorferi sensu lato (s.l.) complex is the most common tick-borne disease in Europe. In addition, the relapsing-fever spirochaete Borrelia miyamotoi, which has been associated with febrile illness and meningoencephalitis in immunocompromised persons, is present in Europe. This study investigated Borrelia prevalence and species distribution in ticks removed from humans and sent as diagnostic material to the Institute for Parasitology, University of Veterinary Medicine Hannover, in 2013-2017. A probe-based real-time PCR was carried out and Borrelia-positive samples were subjected to species determination by reverse line blot (RLB), including a B. miyamotoi-specific probe.

  • The overall Borrelia-infection rate as determined by real-time PCR was 20.02% (510/2547, 95 % CI: 18.48-21.63 %), with annual prevalences ranging from 17.17 % (90/524, 95 % CI: 14.04-20.68 %) in 2014 to 24.12 % (96/398, 95 % CI: 19.99-28.63 %) in 2015.
  • In total, 271/475 (57.1 %) positive samples available for RLB were successfully differentiated
  • Borrelia afzelii was detected in 30.53 % of cases (145/475, 95 % CI: 26.41-34.89)
  • B. garinii/B. bavariensis (13.26 % [63/475], 95 % CI: 10.34-16.65)
  • Borrelia valaisiana  (5.89 % (28/475, 95 % CI: 3.95-8.41)
  • B. spielmanii (4.63 % (22/475, 95 % CI: 2.93-6.93),
  • B. burgdorferi sensu stricto (s.s.)/B. carolinensis (2.32 % (11/475, 95 % CI: 1.16-4.11)
  • B. lusitaniae (0.63 % (3/475, 95 % CI: 0.13-1.83)
  • B. bisettiae (0.42 % (2/475, 95 % CI: 0.05-1.51) of positive ticks
  • Borrelia kurtenbachii was not detected
  • B. miyamotoi (7.37 % (35/475, 95 % CI: 5.19-10.10) of real-time PCR-positive samples

Sanger sequencing of B. garinii/B. bavariensis-positive ticks revealed that the majority were B. garinii-infections (50/52 successfully amplified samples), while only 2 ticks were infected with B. bavariensis. Furthermore, 6/12 B. burgdorferi s.s./B. carolinensis-positive samples could be differentiated; all of them were identified as B. burgdorferi sensu stricto.

Thirty-nine ticks (8.21 %, 95 % CI: 5.90-11.05) were coinfected with two different species. Comparison of the species distribution between ticks removed from humans in 2015 and questing ticks collected in the same year and the same area revealed a significantly higher B. afzelii-prevalence in diagnostic tick samples than in questing ticks, confirming previous observations.

The obtained data indicate that Borrelia prevalence fluctuated in the same range as observed in a previous study, analysing the period from 2006 to 2012.

Detection of B. miyamotoi in 7.37 % of Borrelia-positive samples points to the fact that clinicians should be aware of this pathogen as a differential diagnosis in cases of febrile illness.

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**Comment*

Great example of how there are many more species of borrelia we need to be concerned about than Borrelia burgdorferi.  Remember, current 2-tiered testing only picks up only one borrelia species and is only picking up half of those limited cases showing the abysmal testing fix we are in.

For more on this: https://madisonarealymesupportgroup.com/2020/02/02/why-the-medical-communitys-perspective-on-lyme-disease-is-different-from-a-pathologists-perspective/

 

Category:

Lyme, research, Testing, Ticks

Even in Winter, Lyme Ticks Can Be a Treat

https://6abc.com/5835756/  Video Here

Even in winter, Lyme ticks can be a threat

PHILADELPHIA (WPVI) — With a warm weekend ahead, many people will be outdoors, working in the yard, golfing, or taking walks.

Most probably don’t realize they’ll have company – ticks.

The ticks, which carry Lyme Disease, are active whenever it’s above freezing.

They hide in the leaves in grassy, or brushy areas, making tick bites a real risk.

Lyme Disease is fairly easy to treat if it’s caught early.

Doctors are spreading the word about a faster, easier FDA-approved test.

Called the Sofia-2 test, it uses one drop of blood from a finger stick and gives results in 15 minutes or less.

That answers two big shortfalls of current tests.

“People could have Lyme and the tests will say they don’t have Lyme. The other big problem is it takes several days for that first round of testing to come back,” says Dr. Sean McCloy, a family medicine practitioner with the Integrative Medical Center in Portland, Maine.

So, treatment can be delayed.

Dr. McCloy says Lyme disease is such a problem among his patients he tried out the Sofia 2 test shortly after it got its FDA approval.

“I’ve had patients coming in January with a bull’s eye rash,” he says.

“We know right away if they’ve likely been exposed to Lyme disease, and the physician can either start treatment right then and there and feel comfortable, comfortable and confident doing that,” he adds.

Even in winter, doctors say daily ticks checks are a must.

“When you brush your teeth at night, check every square inch of your body. And you’re looking for poppy seed. The little ticks are as small as a poppy seed,” he says.

“They especially to go to the areas of the body where the sun doesn’t shine,” Dr. McCloy says with a grin.

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**Comment**
I’ve posted this before, but it clearly shows ticks are active even in winter:  https://madisonarealymesupportgroup.com/2016/01/20/polar-vorticks/
The idea that the climate affects these monsters is asinine if you study them for more than 5 minutes.  They seek out leaf litter, snow, and anything that protects them when conditions become harsh.  They survive 3 degree weather under snow and have been found on the blazing hot sand on beaches:  https://madisonarealymesupportgroup.com/2018/06/07/ticks-on-beaches/  They are in caves:  https://madisonarealymesupportgroup.com/2017/10/27/israeli-kids-get-lyme-disease-from-ticks-in-caves/
Again, the climate change narrative is a joke for ticks.

Regarding this Sophia-2 test and being CLIA waived:

Although the CLIA requires a waived test to be simple and have a low risk for erroneous results, it does not mean that they are completely free from error. Errors can happen during the testing process, especially when the instructions of the manufacturer were not completely followed. An error could also happen when the person conducting the test lacks familiarity with the testing system. Also, the only thing needed to be CLIA-waived is a free pass from the FDA.  https://testcountry.com/pages/what-is-clia-waived

For decades the CDC has vilified CLIA-certified labs specializing in Lyme testing.  In fact, for years they called these “home-brewed” tests,  a label meant to inspire doubt and skepticism.  Why?  Well, let’s see, could the fact authorities often own the patents on test kits have anything to do with it?

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A little background on CLIA certification:

CLIA refers to Clinical Laboratory Improvement Amendments. These amendments were passed by the Congress way back in 1988. These laws stipulate that laboratory testing procedures should ensure timeliness, accuracy, and dependability irrespective of the location of the tests.

Prior to 1988, roughly 25% of patient testing conducted in laboratories was not meeting minimum quality requirements. Studies showed that the laboratories that followed minimum quality standards performed better than the laboratories that did not.

The CLIA standards were created in order to ensure that a patient’s test results would be accurate, timely and reliable, regardless of where in the United States the test would be performed.

Seems to me authorities have it all wrong.  FDA approval means little more than cronyism where one health and human services operating division gives another operating division a free pass, whereas, CLIA certification was put in place to at least assure minimum quality standards.  If you look at the organizational chart within the FDA you quickly see that the office of vaccine research and review is directly under the office of compliance & biologics quality.  https://www.fda.gov/about-fda/fda-organization-charts/center-biologics-evaluation-and-research-organization-chart

Again, quite interesting when you understand the Lyme vaccine debacle and backstory.  These people are not to be trusted.  At all.

Many people, including doctors, state that certain labs are FDA approved.  This is untrue. There are FDA approved tests – NOT LABS. And again, just because the FDA approves the tests doesn’t mean they are good and/or accurate.

For more on the Sofia-2 Test:  https://globallymealliance.org/gla-pov-fda-clears-quidel-lyme-disease-immunoassay-sofia-2/

Excerpt:

This rapid test is not intended as a stand-alone determinant of B. burgdorferi infection status and a negative result does not preclude infection with B. burgdorferi. Nevertheless, a negative result would save time and expense insofar as testing by the more elaborate and second-tier Western immunoblot assay, which requires subjective interpretation of results, would be contraindicated.

Despite the rapid results obtained using the Sofia Lyme FIA, as pointed out in another GLA POV entitled “Advances in Serodiagnostic Testing for Lyme Disease Are at Hand,” improvements in serologic testing methods or protocols will not differentiate active infection from past exposure. Thus, ideally, use of NextGen tests like Quidel’s Sofia Lyme FIA will be coupled with other diagnostic methods to directly detect the presence of B. burgdorferi and other tick-borne pathogens in patient samples, thereby allowing discrimination between active vs. past infections. GLA is a leader in actively supporting research efforts to develop such direct detection methods.

And as always, testing isn’t perfect.  

Please notice the illogic in the statement that a negative result doesn’t preclude infection but that a negative result will save time and money in further testing.  Come again?  You just said a negative result doesn’t mean you aren’t infected but they expect you to just sit down and take it.

This attitude is why thousands upon thousands are walking around with undiagnosed infections.

Category:

Lyme, Testing

Why Lyme Disease is so Controversial (And Why Doctors Are Under Fire)

https://medium.com/@kolkmeyerm/why-lyme-disease-is-so-controversial-and-why-doctors-are-under-fire-

Why Lyme Disease is so Controversial (and why doctors are under fire)

Maura Kolkmeyer
Jan 31

This barely scratches the surface and will likely leave you more confused…so welcome to the Lyme world.

I hope this article is your only exposure to this disease, but chances are it isn’t.

At the most basic level, the controversy is the result of the law of numbers:

  1. HUNDREDS of species of the Lyme bacteria exist, and more are discovered each year: borrelia burgdorferi (most common in the US), borrelia recurrentis, borrelia afzelli (European)… to name a few [1].
  2. A HANDFUL: We have a few tests to detect the antibodies of only a handful of these bacteria strains.
  3. HIGH INACCURACIES: the few tests we have for a few of the infectious bacteria are inaccurate up to 60% of the time in the first few weeks of infection. Although more accurate in later weeks, many doctors refuse to test later.
  4. CDC criteria is a threshold test of limited strains and limited antibody proteins: you must have 5 of 10 protein ‘bands’ to test CDC positive, so if you have 1, 2, 3, or 4 — sorry your immune system isn’t reacting enough, it is not CDC positive, you do not qualify for standard treatment. General practitioners and non-Lyme-literate doctors follow this guidance to the letter despite inherent flaws….(See link for full article which does a fantastic job explaining things.)

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For more:  https://madisonarealymesupportgroup.com/2020/02/02/another-lyme-doc-under-fire/

 

Category:

Activism, Lyme, Testing

Chronic Illness From Lyme Disease is Rare, Say UK Researchers (Despite Many Patients Leaving the Country to Get Treatment)

https://danielcameronmd.com/chronic-illness-from-lyme-disease-is-rare-say-uk-researchers/

CHRONIC ILLNESS FROM LYME DISEASE IS RARE, SAY UK RESEARCHERS

In a briefing on October 9th, 2019 in the UK, researchers dismissed the seriousness and prevalence of illness due to Lyme disease. Although they acknowledged that some patients exhibit persistent, chronic Lyme disease symptoms, the numbers, they say, are small.

“Of these [Lyme disease] patients, fewer than one in 20 experience residual symptoms,” writes Harvey in the British Medical Journal.¹

By

The people who did seem to suffer from chronic symptoms were those with neurologic problems.  “Those that have confirmed neurological Lyme disease – a late complication present in about one in 10 cases – have a higher rate of long term subjective symptoms, such as fatigue and poor concentration,” writes Harvey.

Matthew Dryden, consultant microbiologist for Hampshire Hospitals NHS Trust dismissed the number of cases.  Harvey argues that “In most cases, patients with true Lyme do not develop chronic symptoms.”  (He did not define “true Lyme.”)

Sarah Logan, a consultant in the tropical diseases unit at University College London Hospital, addressed the risk in treating Lyme disease, as she described a patient “who contracted an infection from a long term intravenous line that had been fitted abroad to provide them with antibiotics [for Lyme disease].”

Meanwhile, “Other patients have contracted Clostridium difficile and drug resistant infections from long term antibiotic therapy,” she writes.

The attendees failed to address the risk of not treating a Lyme disease patient, nor did they acknowledge the limited treatment options available in the UK. They did, however, express concern that patients were seeking treatment outside of their country.

Regardless of their position on chronic Lyme disease, ticks remain a very real concern in England. As Tim Brooks, clinical services director at Public Health England’s rare and imported pathogens laboratory, points out,

“You’re just as likely to contract Lyme disease in your back garden as you are in the countryside.”

“There are around 1,000 laboratory-confirmed cases of Lyme disease in England and Wales annually, with an estimated 2,000 more cases successfully treated in primary care without positive blood tests,” writes Harvey.

Editor’s note: I feel it’s important to be informed of the UK researchers’ opinions even if I do not agree with their positions.  It is not a surprise that their patients have had to leave the UK to seek treatment for Lyme disease.
Related Articles:

Infected ticks prevalent in urban areas in the United Kingdom (UK)

Patients can die when Lyme carditis is not treated

High number of Lyme disease diagnoses through the winter in England

References:
  1. Harvey A. Lyme disease: chronic illness is rare, say experts. BMJ. 2019 Oct 10;367:l5975. doi: 10.1136/bmj.l5975.

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**Comment**

If Lyme is so rare in the UK, why are UK patients contacting me, as I live all the way in Wisconsin?  I’m telling you – Drydon has his head in the sand and lives in an alternate reality.

And if all of this is so rare, why is there a new UK Lyme clinic opening up to treat these patients if it wasn’t needed?  https://madisonarealymesupportgroup.com/2019/12/08/new-uk-lyme-disease-clinic-accepting-patients/

Please remember the researchers are basing their numbers on faulty antibody testing which misses over half of all cases, and not only that but certain places in the UK seemingly use 3-tiered testing making it even harder to get diagnosed, explained here:

https://madisonarealymesupportgroup.com/2019/12/24/borrelia-detection-lyme-disease-the-current-uk-situation/

Excerpt:

Laboratory confirmation of Borrelia infection in the UK is based around the protocol laid down in 1995 by the Centres for Disease Control (CDC) in the US. The concept developed at this time was that a two-tier systems should be used, where the first-tier test should be a high sensitivity assay, such as an ELISA, followed by a more specific, but less sensitive, immunoblot. It would appear that in the UK, some of the regional hospital laboratories use the DiaSorin Liaison XL auto-analyser as a screening approach. If positive or equivocal, a further patient sample should be sent to the reference laboratory, where the first-tier assay is the C6 ELISA and the second tier is a microarray immunoblot assay (ViraChip from Viramed; Theel et al., 2018), a more robust version of the previous line blot system (itself a replacement for the Western blot.

It would appear that in effect, a three-tier system is operated to provide laboratory confirmation of Lyme disease in some regions of the UK.

For a lengthy read on UK testing by Chris Newton, Research Director CIMMBER in the UK: https://www.linkedin.com/pulse/borrelia-detection-lyme-disease-chris-newton/

 

 

 

 

 

 

Category:

Lyme, research, Testing