Archive for the ‘Testing’ Category

Relapsing Fever Spirochete Uniquely Adapted to Highly Oxidative Salivary Glands of Soft-bodied Tick

https://www.ncbi.nlm.nih.gov/pubmed/30489694

2018 Nov 29:e12987. doi: 10.1111/cmi.12987. [Epub ahead of print]

The relapsing fever spirochete Borrelia turicatae persists in the highly oxidative environment of its soft-bodied tick vector.

Abstract

The relapsing fever spirochete Borrelia turicatae possesses a complex life cycle in its soft-bodied tick vector, Ornithodoros turicata. Spirochetes enter the tick midgut during a bloodmeal, and during the following weeks spirochetes disseminate throughout O. turicata. A population persists in the salivary glands allowing for rapid transmission to mammalian hosts during tick feeding. Little is known about the physiological environment within the salivary glands acini in which B. turicatae persists. In this study, we examined the salivary gland transcriptome of O. turicata ticks and detected the expression of fifty-seven genes involved in oxidant metabolism or antioxidant defenses. We confirmed the expression of five of the most highly expressed genes including glutathione peroxidase (gpx), thioredoxin peroxidase (tpx), manganese superoxide dismutase (sod-1), copper-zinc superoxide dismutase (sod-2), and catalase (cat) by reverse-transcriptase droplet digital PCR (RT-ddPCR). We also found distinct differences in the expression of these genes when comparing the salivary glands and midguts of unfed O. turicata ticks.

Our results indicate that the salivary glands of unfed O. turicata nymphs are a highly oxidative environment where reactive oxygen species (ROS) predominate, while midgut tissues comprise a primarily nitrosative environment where nitric oxide synthase is highly expressed. Additionally, B. turicatae was found to be hyperresistant to ROS compared to the Lyme disease spirochete B. burgdorferi, suggesting that it is uniquely adapted to the highly oxidative environment of O. turicata salivary gland acini.

___________________

**Comment**

Much can be learned about Borrelia turicatae by reading this case study:  https://wwwnc.cdc.gov/eid/article/23/5/16-2069_article

We learn:

  • Ornithodoros turicata soft bodied ticks, are endemic to Texas and Florida
  • They are found in caves and ground squirrel or prairie dog burrows  https://madisonarealymesupportgroup.com/2018/04/23/tick-borne-relapsing-fever-found-in-austin-texas-caves/
  • Once infected, they remain infected for the rest of their lives, which can be up to ten years.
  • Attachment is painless
  • They are rapid night feeders (5-60min)
  • Due to their rapid feeding they are rarely found or leave lesions
  • Patient in study suffered with headache, nausea, & pain behind knees
  • Had numerous lesions which resolved after 6 days (without treatment)
  • Developed persistent fever
  • Developed thrombocytopenia (low platelets)
  • Developed elevated Erythrocyte sedimentation rate & C-reactive protein
  • Improved rapidly with doxycycline
  • Platelet count normalized within 2 weeks
  • Asymptomatic soldiers with similar exposure were treated prophylactically
  • TBRF is a neglected and probably underdiagnosed disease
  • Published cases in Texas have been supported by serology for the TBRF group, exposure location, and tick collections, but the authors state successful identification of B. turicatae in a human has not been reported
  • Military training groups in Israel have declared certain caves off limits because of heavy tick presence https://madisonarealymesupportgroup.com/2017/10/27/israeli-kids-get-lyme-disease-from-ticks-in-caves/ and have prophylactically administered doxycycline to those suspected to have been exposed
  • Asymptomatic patients given doxy don’t have a Jarisch-Herxheimer reaction but those with active illness do
Another study demonstrating the wily and adaptable nature of spirochetes.

 

 

 

 

Baggio-Yoshinari Brazil’s Lyme-Like Illness From Ticks That Shouldn’t Transmit it

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6218955/

. 2018; 73: e394.
Published online 2018 Nov 6. doi: 10.6061/clinics/2018/e394
PMCID: PMC6218955
PMID: 30462754

Passage of Borrelia burgdorferi through diverse Ixodid hard ticks causes distinct diseases: Lyme borreliosis and Baggio-Yoshinari syndrome

Abstract

Baggio-Yoshinari syndrome is an emerging, tick-borne, infectious disease recently discovered in Brazil. This syndrome is similar to Lyme disease, which is common in the United States of America, Europe and Asia; however, Brazilian borreliosis diverges from the disease observed in the Northern Hemisphere in its epidemiological, microbiological, laboratory and clinical characteristics. Polymerase chain reaction procedures showed that Baggio-Yoshinari syndrome is caused by the Borrelia burgdorferi sensu stricto spirochete. This bacterium has not yet been isolated or cultured in adequate culture media. In Brazil, this zoonosis is transmitted to humans through the bite of Amblyomma and Rhipicephalus genera ticks; these vectors do not belong to the usual Lyme disease transmitters, which are members of the Ixodes ricinus complex. The adaptation of Borrelia burgdorferi to Brazilian vectors and reservoirs probably originated from spirochetes with atypical morphologies (cysts or cell-wall-deficient bacteria) exhibiting genetic adjustments, such as gene suppression. These particularities could explain the protracted survival of these bacteria in hosts, beyond the induction of a weak immune response and the emergence of serious reactive symptoms. The aim of the present report is to note differences between Baggio-Yoshinari syndrome and Lyme disease, to help health professionals recognize this exotic and neglected zoonosis.

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**Comment**

This abstract shows a Bbss spirochete NOT YET isolated or cultured in adequate culture media, i.e., is invisible to current lab techniques.  Also, please note that the ticks mentioned are not TYPICALLY thought of as transmitting Lyme.

Two commonly touted myths busted to smithereens.

The plot thickens with the mere mention of ATYPICAL morphologies (cysts or cell wall deficient) bacteria as well as GENETIC ADJUSTMENTS WITH GENE SUPRESSION, and the ability of these bacteria to SURVIVE FOR A LONG TIME.  

To this day, the CDC/IDSA refuses to recognize the persistent nature and pleomorphism of Bb.

Researchers who talk about pleomorphism are almost always from outside the U.S.:  https://www.frontiersin.org/articles/10.3389/fmicb.2017.00596/full  There’s only a handful of U.S. researchers taking on pleomorphism.  All the IDSA-authors (The Cabal) report about Lyme as if it were a mere nuisance, which it is not.

In short, we have a LYME-LIKE Illness that:

  • can’t be picked up with common lab techniques
  • coming from ticks that don’t normally transmit it
  • caused by a bacteria that shape-shifts
  • makes genetic adjustments to survive

Now add other potential pathogens to this stew and it’s quite clear why patients are so ill and why it takes far more than 21 days of the mono-therapy of doxycycline.

Please spread the word!

For More:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  This international group of researchers state that:

“Our findings recognize that microbial infections in patients suffering from TBDs do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes.”

They also point out that 83% of all commercial tests focus only on Lyme (borrelia), despite the fact we are infected with more than one microbe.

They too mention the pleomorphism of borrelia:

“In addition to tick-borne co-infections and non-tick-borne opportunistic infections, pleomorphic Borrelia persistent forms may induce distinct immune responses in patients by having different antigenic properties compared to typical spirochetes32,33,34,35. Nonetheless, current LD diagnostic tools do not include Borrelia persistent forms, tick-borne co-infections, and non-tick-borne opportunistic infections.”

It’s all right here in bright purple crayon.

 

 

Ehrlichiosis Presenting as Severe Sepsis & Meningoencephalitis in an Immunocompetent Adult

https://www.ncbi.nlm.nih.gov/m/pubmed/30425837/

Ehrlichiosis presenting as severe sepsis and meningoencephalitis in an immunocompetent adult.

Buzzard SL, et al. JMM Case Rep. 2018.

Abstract

Introduction: Ehrlichia are obligate intracellular pathogens transmitted to vertebrates by ticks.

Case presentation: We report the case of a 59-year-old man who presented to the University of Kentucky Albert B. Chandler Medical Center (Lexington, KY, USA) after being found fallen down in the woods. A lumbar puncture revealed what appeared to be bacterial meningitis, yet cerebrospinal fluid cultures, Gram stains and a meningitis/encephalitis panel were inconclusive. However, an Ehrlichia DNA PCR of the blood resulted as being positive for Ehrlichia chaffeensis antibodies. The patient received a 14 day course of doxycycline, and recovered from his multiple organ failure. The aetiology of the ehrlichial meningoencephalitis was likely transmission through a tick-bite, due to the patient’s outdoor exposure.

Conclusion: While it is rare to see Ehrlichia as a cause of meningitis, this illness can progress to severe multisystem disease with septic shock, meningoencephalitis or acute respiratory distress syndrome (ARDS). Those with compromised immunity are at a higher risk of developing the more severe form of the disease and have higher case fatality rates.

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**Comment**

Nothing about this monster is rare – it’s just not in the literature yet.  Again, researchers would be wise to remember that just because something isn’t found in the literature, doesn’t mean it doesn’t happen, particularly in a disease complex that testing misses half the cases and much goes unreported because it’s undiagnosed or misdiagnosed.

Notice this poor man was found flat on his face in the woods – that’s how serious this stuff can be.  Please notice his immune system was fine.

Meningeal involvement (brain swelling) is NOT rare.  Why would it be?  When these pathogens can cross the blood/brain barrier, it makes complete, logical sense that people would deal with swelling.  They deal with swelling in their elbows, knees, fingers, wrists, and about every other place in the body.  Dr. Phillips talks about Balanitus, a painful swelling of the foreskin, or head of the penis in males here:  https://madisonarealymesupportgroup.com/2018/12/22/s-e-x-lyme-msids/

I had swelling in my head so great that I wondered if I’d ever go a day without excruciating headaches that honestly felt like I’d been kicked by a horse, but the pain was completely all over in the lining of my head (meningeal).  I had an MRI, which came back normal, but I’ve met numerous folks with a Lyme and Chiari diagnosis:  https://madisonarealymesupportgroup.com/2016/04/02/chiari/

Warning – some with Lyme/MSIDS go through with the Chiari surgery but continue to have symptoms because until the pathogens are dealt with, symptoms will not resolve.  

Now, I’m just a crazy gray-hair, but doesn’t it seem quite logical to have swelling in the brain with Lyme/MSIDS?

For more:  https://madisonarealymesupportgroup.com/2018/12/02/everything-thats-known-about-ehrlichiosis/

https://madisonarealymesupportgroup.com/2018/10/15/ehrlichiosis-masquerading-as-thrombotic-thrombocytopenia-purpura/

https://madisonarealymesupportgroup.com/2018/10/02/north-carolina-ehrlichia-often-overlooked-when-tick-borne-illness-suspected/

https://madisonarealymesupportgroup.com/2018/07/24/oklahoma-ehrlichiosis-central/

https://madisonarealymesupportgroup.com/2018/11/11/gestational-lyme-other-tick-borne-diseases-dr-jones/

https://madisonarealymesupportgroup.com/2018/03/09/dogs-ehrlichiosis/

Diagnosing LD in Children With Neuropsychiatric Illness

https://www.rheumatologyadvisor.com/lyme-disease/lyme-disease-diagnostic-uncertainty-in-children-with-neuropsychiatric-illness/article/783880/

Diagnosing Lyme Disease in Children With Neuropsychiatric Illness

Please see comment at end of article
There is a general lack of understanding of Lyme disease among physicians, and Lyme neuroborreliosis is notoriously very difficult to recognize in children. <i>Credit:Eye of Science/Science Source</i>
There is a general lack of understanding of Lyme disease among physicians, and Lyme neuroborreliosis is notoriously very difficult to recognize in children. Credit:Eye of Science/Science Source

 

Lyme disease can present with a multitude of symptoms that often mimick other diseases, making differential diagnosis difficult. Neurologic involvement has been reported in up to 15% of untreated Borrelia burgdorferi infection,1 which can be devastating, particularly in children and young adults, who have been reported to be more at risk. According to the US Centers for Disease and Control and Prevention (CDC), Lyme disease is on the rise.2 Each year, at least 300,000 people in the United States are diagnosed with Lyme disease, with the highest infection rates occurring in children age 5 to 10 years.2,3

Lyme neuroborreliosis can affect any part of the nervous system, and there are a wide range of neurologic and psychiatric symptoms that can manifest weeks, months, or even years after the initial infection. For example, memory impairment, irritability, and somnolence have been reported months to years after the initial classic presentation of Lyme disease, and encephalopathy has been reported to occur more than 10 years after the onset of the disease.4,5 The presenting neurologic symptoms, including facial palsy, debilitating fatigue, various levels of cognitive loss, psychiatric symptoms, behavior changes, and learning difficulties have a significant and negative effect on the critical stages of child development, including school attendance and decline in school performance.6,7

Full recovery from Lyme neuroborreliosis can be achieved when the disease is diagnosed promptly and accurately and appropriate treatment is initiated. However, there is a general lack of understanding of Lyme disease among physicians, and Lyme neuroborreliosis is notoriously very difficult to recognize and diagnose in children. Shannon Delaney, MD, MA, director of child and adolescent research and evaluation at the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center in New York told Rheumatology Advisor that,

“Neuroborreliosis can be missed because it is not considered in the differential [diagnosis] and because spinal taps are often not [performed] unless a child has very obvious symptoms of encephalitis or meningitis.”

The overlap of symptoms with other neurologic, cognitive, and psychiatric symptoms contributes to the delayed diagnosis or the misdiagnosis. For example, case reports of neuropsychological manifestations of Lyme disease include Tourette syndrome, acute delirium, catatonia, and psychosis.8

Dr Delaney advises that,

“Any child with acute onset neuropsychiatric symptoms, such as [obsessive-compulsive disorder], psychosis, restricted eating, sensory issues, urinary frequency, anxiety, cognitive dysfunction, or extreme fatigue should be given a set of lab tests to rule out typical infectious causes of Pediatric Acute-onset Neuropsychiatric Syndrome/Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.”

Dr Delaney added,

“Testing should include a Lyme ELISA [enzyme-linked immunosorbent assay], preferably Borrelia burgdorferi C6 peptide, and a Lyme Western blot to evaluate for exposure to Lyme disease.”

Because symptoms of Lyme neuroborreliosis affect the joints, muscle, and the central and peripheral nervous systems, health professionals from many disciplines, including neurology and psychiatry, need to be able to recognize the clinical presentations, know the essential diagnostic tests, and understand the treatment approach. Erythema migrans is a distinct early presentation of localized Lyme disease,8 and for the experienced physician, this presentation can be sufficient for a clinical diagnosis. Serologic testing at this early disease stage is of limited diagnostic value because of the high incidence of false negative results.

When serologic testing is indicated, the Infectious Diseases Society of America (IDSA) recommend enzyme immunoassay for Lyme-specific antibodies, confirmed with Western immunoblot assay for immunoglobin G; however, many physicians struggle with the correct interpretation of Western blot results.9,10 Dr Delaney cautions,

“Clinicians should be aware that the 2-tier method of testing (ELISA and Western blot), while informative, can have false negative [results] and, less frequently, false positive [results].” Furthermore, although several tests for Lyme disease are available commercially, many are not validated for clinical use, and the CDC strongly warns against their use, as they have been associated with high levels of misdiagnosis.8  

The IDSA recommends antibiotics for the treatment of Lyme disease for a period of 10 to 21 days for early disease and 2 to 4 weeks for late disease.9 Despite the recommendations, studies that distinguish the treatment of Lyme disease from that of Lyme neuroborreliosis are lacking.9 In fact, a systematic review that examined antibiotic treatment for Lyme neuroborreliosis in 450 participants included no trials conducted in the United States.11 The review found no clear evidence for the additional efficacy of repeated antibiotics beyond the initial treatment.11

In addition, prolonged use of antibiotics to treat post-Lyme disease symptoms has not been shown to be efficacious and is generally not recommended, as fatalities from Clostridium difficile and Candida parapssilosis have been reported.8

Clinically, we do recognize that there are a subset of patients who only get better after a repeated course of antibiotics,” said Dr Delaney, adding, “In the future as the science progresses, hopefully, we will be able to make use of blood tests that provide biomarkers indicating who needs additional antibiotic therapy and who needs another approach. This is the age of precision medicine and our goal at Columbia is to help in the identification of these essential biomarkers that will help guide treatment.”

The need for additional research is evident to better define the optimal use of antibiotics for the treatment of Lyme neuroborreliosis.11 The effect of long-term use of antibiotics also deserves attention. Inappropriate antibiotic use can alter the balance of the gut microbiome and may lead to side effects. The effect of long-term antibiotics on the gut microbiome is an area of emerging study and should provide very useful information in the future regarding whether or not the alterations themselves are contributing to ongoing symptoms. Until more research is available to better guide the management of the neurologic manifestations of B burgdorferi infection, it is important that physicians have heightened awareness of Lyme disease. They must also have a clinical suspicion of Lyme neuroborreliosis in children who present with neuropsychiatric illness and must diagnose the disease promptly and provide appropriate treatment, which may include referral for appropriate symptom management.

References

  1. Marques AR. Lyme neuroborreliosis. Continuum (Minneap Minn). 2015;21(6):1729-1744.
  2. US Centers for Disease Control and Prevention. Lyme disease. Lyme disease graphs. https://www.cdc.gov/lyme/stats/graphs.html. Updated November 1, 2017. Accessed July 17, 2018.
  3. US Centers for Disease Control and Prevention. Lyme disease. How many people get Lyme disease? https://www.cdc.gov/lyme/stats/humancases.html. Updated September 30, 2015. Accessed July 17, 2018.
  4. Bloom BJ, Wyckoff PM, Meissner HC, Steere AC. Neurocognitive abnormalities in children after classic manifestations of Lyme disease. Pediatr Infect Dis J. 1998;17(3):189-196.
  5. Szer IS, Taylor E, Steere AC. The long-term course of Lyme arthritis in children. N Engl J Med. 1991;325(3):159-163.
  6. Lyme Disease Action. Neurology and Psychiatry. Involvement of the Central and Peripheral Nervous System. https://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/. Updated November 26, 2016. Accessed July 17, 2018.
  7. Cameron D. Adolescents with Lyme disease. http://danielcameronmd.com/adolescent-lyme-disease/. 2018. Accessed July 17, 2018.
  8. Koster MP, Garro A. Unraveling diagnostic uncertainty surrounding Lyme disease in children with neuropsychiatric illness.Child Adolesc Psychiatr Clin N Am. 2018;27(1):27-36.
  9. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
  10. Conant JL, Powers J, Sharp G, Mead PS, Nelson CA. Lyme disease testing in a high-incidence state: clinician knowledge and patterns. Am J Clin Pathol. 2018;149(3):234-240.
  11. Cadavid D, Auwaerter PG, Rumbaugh J, Gelderblom H. Antibiotics for the neurological complications of Lyme disease. Cochrane Database Syst Rev. 2016;12:CD006978.

__________________

**Comment**

A few points of contention:

  1. While the EM rash IS an early symptom that clinically proves the person has Lyme, many never see or have a rash at all or it is certainly not a “typical” EM rash.  Clinicians need education in this.
  2. Numbers are notoriously low on all things Lyme/MSIDS, including this supposed 15% who have neurologic involvement.  Everyone I work with is in this category so I’m either just a lucky-duck or the numbers are far higher in the real world.  I suspect the latter.
  3. Testing for Lyme/MSIDS IS ABYSMAL.  Absolutely worthless.  It misses over half of all cases.  I’m thankful the article states professionals need to be educated because this is a CLINICAL DIAGNOSIS.  Anyone who says otherwise is smoking something.  Again, clinicians need education.
  4. Where the article really falls apart is in the treatment section.  This article ONLY discusses the IDSA approach which is essentially 21 days of doxycycline despite the presentation.  I couldn’t disagree more.  If you read the ILADS guidelines, you will discover that treatment is far more complex.  There are many who have gotten well or improved dramatically with this approach.  The reason for this is numerous:  1) we are typically infected with more than borrelia, necessitating numerous drugs 2) all of these pathogens are stealthy and many are persistent requiring far longer treatment courses than appreciated 3) these pathogens work together to suppress the immune system and complicate the picture requiring numerous treatments
  5. The Cochrane review of antibiotics for neuro-Lyme mentioned had numerous flaws: none included a placebo control, only ONE was blinded, most were not adequately powered for non-inferiority comparison, they ONLY investigated four antibiotics:  penicillin G & ceftriaxone in 4 studiesdoxycycline in 3 studies, cefotaxime in two studies, and amoxicillin vs. placebo for only 3 months following initial treatment with IV ceftriaxone.  (I consider many of these antibiotics poor choices for Lyme and I’ve never taken two of them.  I had to look one up as I’d NEVER even heard of it!) The trials measured efficacy using heterogeneous physician‐ or patient‐reported outcomes, or both.  None of the studies reported on the proposed primary outcome, ‘Improvement in a measure of overall disability in the long term (three or more months).’ The quality of adverse event reporting was low.  So, as far as I’m concerned this “review” is extremely weak yet it’s presented as evidence that long-term antibiotics do not work.  Please see this article for comparison:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/  Also, I would not be writing this article without the judicious use of long-term antibiotics.
  6. It’s interesting that although the author disses long-term antibiotics using the IDSA clap-trap and an extremely weak and flawed review, she did include the quote from Dr. Delaney,

“Clinically, we do recognize that there are a subset of patients who only get better after a repeated course of antibiotics,” said Dr Delaney

Hmmm….that appears to be a cognitive disconnect.

To clear the record:  nearly all of us out here in Lymeland HATE taking antibiotics.

We take them because they often work better than other things we’ve tried.  They are also more affordable than other many other options.

But, if we could press some magic button, believe me –  we would.  

I find it interesting that people with acne can take antibiotics forever, yet patients with life-threatening tick-borne illness are told extended antibiotics can give them C-diff, therefore they are bad and shouldn’t be considered.  Period.

 This disconnect is wholly unacceptable.

 

 

 

 

 

 

 

Laboratory Testing For Lyme Disease

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/23763774?

Laboratory testing for Lyme disease

Carl Tuttle
Hudson, NH, United States
DEC 15, 2018 —

Direct detection laboratory testing (DNA/PCR Sequencing) is used for many infections (Ebola (1), Zika (2), Bartonella (3) etc.) but not Lyme disease.

  1. Ebola RealStar® Filovirus Screen RT-PCR Kit 1.0
    https://www.qiagen.com/no/shop/realstar-filovirus-screen-rt-pcr-kit-1-0/#orderinginformation
  2. CDC Lauds New DNA Test for Zika in Blood
    http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/58622?xid=nl_mpt_DHE_2016-06-18&eun=g750897d0r
  3. In May of 2012 the CDC announced the Development of a Novel Genus-specific Real-time PCR Assay for Detection and Differentiation of Bartonella Species and Genotypes
    http://www.ncbi.nlm.nih.gov/pubmed/22378904

For over two decades (Dearborn conference 1994) The U.S. Centers for Disease Control has avoided and denounced all direct detection methods for Lyme disease while promoting the faulty/misleading two tier antibody algorithm. Serology for Lyme disease cannot be used to gauge treatment failure or success so it is the ideal tool for concealing chronic Lyme disease.
The CDC does use DNA/PCR testing however to verify infection in postmortem patients who died suddenly of Lyme carditis. (1, 2, 3)

  1.  A case report of a 17-year old male with fatal Lyme carditis
    http://www.cardiovascularpathology.com/article/S1054-8807(15)00025-3/abstract?rss=yes
  2. Three Sudden Cardiac Deaths Associated with Lyme Carditis: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w
  3. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden
    Cardiac Death Associated with Lyme Carditis. (March 2016)
    http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract
So it would appear that you have to die first to obtain irrefutable proof of Lyme disease.

Please see the following letter addressed to the Director of Quest Diagnostics-New England regarding current antibody testing for Lyme disease. These tests are the root cause of unimaginable pain and suffering.

——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: Salim.E.Kabawat@questdiagnostics.com, Brett.Giroir@hhs.gov, Alex.Azar@HHS.GOV, tickbornedisease@hhs.gov,
Cc: (64 undisclosed recipients)
Date: December 13, 2018 at 12:10 PM
Subject: Lyme disease Western Blot test (2009 communication follow-up)

Dec 13, 2018

Quest Diagnostics-New England
415 Massachusetts Ave.
Cambridge, MA 02139
Attn: Salim E. Kabawat, M.D. Medical Director

Dear Dr. Kabawat,

I would like to call attention to the following publication coauthored by Paul Mead, MD, MPH Acting Branch Chief of the Division of Vector-Borne Diseases at the CDC in Fort Collins, Colorado:

Direct Diagnostic Tests for Lyme Disease
Clinical Infectious Diseases, ciy614, https://doi.org/10.1093/cid/ciy614

Published: 11 October 2018 Paul S Mead

Excerpt:

“The 1994 serodiagnostic testing guidelines predated a full understanding of key B. burgdorferi antigens and have a number of shortcomings. These serologic tests cannot distinguish active infection, past infection, or reinfection. Reliable direct-detection methods for active B. burgdorferi infection have been lacking in the past but are needed and appear achievable.”

Has Dr. Paul Mead of the CDC reached out to you to ask that you include this disclaimer in your Western blot serology test results for Lyme disease?

Dr. Neil Spector’s serology was repeatedly negative leaving his Lyme untreated for four years resulting in the need of a heart transplant. [1]

Four negative Lyme test results led to a misdiagnosis of Multiple Sclerosis prompting a lawsuit in Pennsylvania.

IN THE SUPREME COURT OF PENNSYLVANIA MIDDLE DISTRICT
https://www.dropbox.com/s/9qdt78jnq5i6lne/PA%20Lawsuit%20MS%20Misdiagnosis.pdf?dl=0

Per the email thread below, I had this conversation with you nine years ago. How many patients since then have been misdiagnosed and left untreated because there is no disclaimer on your test results informing the patient (and physician) that a negative result does not necessarily mean that you don’t have Lyme disease?

Don’t you think it is time for change; full disclosure perhaps?

A response to this inquiry is requested.

Sincerely,
Carl Tuttle
Lyme Endemic Hudson, NH

Cc: ADM Brett P. Giroir, M.D., Assistant Secretary for Health

Reference:
1. Neil Spector “Gone in a Heartbeat”
https://www.bayarealyme.org/blog/story/neil-spector/

2009 Response from Director Kabawat:
———- Original Message ———-
From: Kabawat, Salim E
To: runagain@comcast.net
Cc: Panarelli, Robert M
Date: June 12, 2009 at 2:17 PM
Subject: Lyme disease Western Blot test

Mr. Carl Tuttle 33 David Dr
Hudson, NH 03051

Greetings Mr. Tutle; Regarding your question on Lyme disease Western Blot Test, Quest Diagnostics follows CDC guidelines regarding Lyme reporting. See MMWR August 11, 1995 / 44(31);590-591 “It was recommended that an IgM immunoblot be considered positive if two of the following three bands are present: 24 kDa (OspC) * , 39 kDa (BmpA), and 41 kDa (Fla) (1). It was further recommended that an that IgG immunoblot be considered positive if five of the following 10 bands are present: 18 kDa, 21 kDa (OspC) *, 28 kDa, 30 kDa, 39 kDa (BmpA), 41 kDa (Fla), 45 kDa, 58 kDa (not GroEL), 66 kDa, and 93 kDa (2).”

Sincerely;
Salim E. Kabawat, M.D.

Quest Diagnostics-New England| Medical Director | 415 Massachusetts Ave., Cambridge, MA 02139 | phone617.520.8242 | fax 617.520.7703 |salim.e.kabawat@questdiagnostics.com| www.QuestDiagnostics.com

2009 follow-up letter to Dr. Kabawat: (No response)

———- Original Message ———-
From: runagain@comcast.net
To: Salim E Kabawat <Salim.E.Kabawat@questdiagnostics.com>
Cc: Robert M Panarelli <Robert.M.Panarelli@questdiagnostics.com>
Date: June 17, 2009 at 1:06 PM

Subject: Re: Lyme disease Western Blot test

June 17, 2009
Quest Diagnostics-New England
415 Massachusetts Ave.
Cambridge , MA 02139
Attn: Salim E. Kabawat, M.D. Medical Director

Dear Dr Kabawat,

Each week for the past month I submitted the following question through your online patient inquiry portal:

“Could you please tell me why Quest Labs’ Western blot Lyme test doesn’t include band 31 and 34? Is it possible that your exclusion of these bands is missing many Lyme cases since band 31 and 34 are highly specific to Borrelia burgdorferi and were originally chosen for vaccine development?”

On June 9, 2009 you responded to my inquiry referring to a thirteen year old CDC guideline for Lyme disease reporting dated August 11, 1995
(MMWR 44(31);590-591). You then cut and pasted the following information from that guideline:

“It was recommended that an IgM immunoblot be considered positive if two of the following three bands are present: 24 kDa (OspC) * , 39 kDa (BmpA), and 41 kDa ( Fla ) (1). It was further recommended that an that IgG immunoblot be considered positive if five of the following 10 bands are present: 18 kDa, 21 kDa (OspC) *, 28 kDa, 30 kDa, 39 kDa (BmpA), 41 kDa (Fla), 45 kDa, 58 kDa (not GroEL), 66 kDa, and 93 kDa (2).”

On February 11, 2005 the Centers for Disease Control and Prevention issued the following caution (MMWR Morb Mortal Wkly Rep 2005; 54:125–6) regarding testing for Lyme disease:

Health-care providers are reminded that a diagnosis of Lyme disease should be made after evaluation of a patient’s clinical presentation and risk for exposure to infected ticks, and, if indicated, after the use of validated laboratory tests.

As I review my wife and daughter’s Western blot lab results which were ordered through Quest laboratory Apr 16, 2009 and May 7, 2009 respectively, I cannot locate the disclaimer reminding the physician that a diagnosis of Lyme disease should be made after evaluation of the patient’s clinical presentation or risk for exposure to infected ticks. In fact, my daughter’s primary care physician called to inform her that she didn’t have Lyme disease based on your lab results alone without considering clinical symptoms whatsoever.

The attached CDC deer tick/Lyme study concludes that we are living in an area with one of the highest rates in the state. Residents in our area have a 77% chance of contracting Lyme through a deer tick bite. Physicians in this “endemic area” as we have experienced are not familiar with the clinical manifestations of Lyme especially when the patient does not present with the typical bulls eye rash or recall experiencing a tick bite as is the case 50% of the time.

UMass Amherst NH deer tick/Lyme study:
https://www.dropbox.com/s/kvxnp7tffoy4yas/NH%20Tick%20StudyText%20added.doc?dl=0

Your lab tests are contributing to the problem as all the physician sees is the word NEGATIVE on the results.

Under the Infectious Conditions for Public Health Surveillance page, the Centers for Disease Control updated its Lyme Case Definition in 2008 stating the following:

“This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis

This includes the thirteen year old 1995 CDC guideline for reporting purposes that you referred to in your original response.

Lyme literate Infectious Disease Specialists recognize that it is not necessary to have five positive Western blot IgG bands or two IgM bands in order to diagnose Lyme disease. Those guidelines were strictly developed for surveillance purposes only.

Your lab results neglect to mention any of this so Quest Labs along with other commercial labs is misleading the physician. I don’t believe this is intentional but more on the lines of complacency.

I have first hand experience after chasing an unresolved fatigue for twelve years as my Western blot results show only two positive bands. I would like to mention that private Lyme testing labs (i.e. IGeneX Labs) are informing the patient with disclaimers stating that diagnosis should not be based on laboratory tests alone and results should be interpreted in conjunction with clinical symptoms and patient history.

There is a moral responsibility to provide accurate information as I have identified in this letter. I would like to remind you of the following statement found on your Company Info page:

“Quest Diagnostics is People. Dedicated people who understand that behind every specimen and result there is a human life

Our Vision, Mission & Values
Accountability

As a company and as individuals, we accept full responsibility for our performance and acknowledge our accountability for the ultimate outcome of all that we do. We strive for continuous improvement, believing that competence, reliability, and rigorous adherence to process discipline are the keys to excellence

How many Lyme patients have been misdiagnosed and told they do not have Lyme disease due to your “NEGATIVE” lab results and missing disclaimers? There is a dire need to change your methods and educate the physician to avoid patient suffering by missing the window of opportunity for treatment.

Sincerely,
Carl Tuttle
Hudson , NH 03051

_________________

More on testing:  https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/

https://madisonarealymesupportgroup.com/2018/01/16/2-tier-lyme-testing-missed-85-7-of-patients-milford-hospital/

https://madisonarealymesupportgroup.com/2018/10/13/direct-test-for-ld-carl-tuttle-chews-up-cdc-spits-them-out/

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.”

IN PLAIN ENGLISH, THE CDC’S “FDA APPROVED” TWO-TIERED TESTS DON’T SHOW SQUAT.

 

Everything About Lyme Disease is Steeped in Controversy. Now Some Doctors Are Too Afraid to Treat Patients

https://www.thestar.com/life/health_wellness/2018/12/14/everything-about-lyme-disease-is-steeped-in-controversy-now-some-doctors-are-too-afraid-to-treat-patients.html

Everything about Lyme disease is steeped in controversy. Now some doctors are too afraid to treat patients

Bruce Shilton’s crippling fatigue left him bedridden for six months. Sue Faber was so forgetful, she couldn’t remember her daughters’ birthdates. And Andrea Smith’s relentless aches sent her into a deep depression.

All three Canadians say they are struggling with a chronic form of Lyme disease and feel abandoned by Canada’s health-care system.

Sue Farber, left, Bruce Shilton and Andrea Smith suffer from a chronic form of Lyme disease.
Sue Farber, left, Bruce Shilton and Andrea Smith suffer from a chronic form of Lyme disease.  (Richard Lautens/Toronto Star |Cole Burston for the Toronto Star |Steve Russel/Toronto Star)

The challenge for them, and other patients with Lyme, is that the medical community is divided on how best to diagnose and treat this controversial disease.

On one side of this deep divide are mainstream doctors who say Lyme is easy to diagnose with standard testing, and the prevailing treatment — a short course of antibiotics — is enough to kill the bacteria that causes the disease. They believe patients who think they have chronic Lyme but have no evidence of infection are grappling with other illnesses and that treating for Lyme masks the real cause of their symptoms and does more harm than good.

On the other side are doctors who say this is an extremely complex disease. It is often called “The Great Imitator” because its symptoms mimic other diseases and can affect any part of the body, including the brain, heart and nervous system. They say the standard testing is flawed, resulting in missed cases and misdiagnosis, and if it’s not caught early the required treatment is longer antibiotic use.

In Canada, treatment is based on guidelines established in the United States. But several states have passed doctor-protection laws that allow physicians to treat Lyme more aggressively with longer-term antibiotics. Here, however, physicians typically refuse to treat chronic Lyme, or they do so quietly so that regulatory agencies don’t find out.

This leaves desperately ill patients with few options, which is especially troubling because research shows people with Lyme are at greater risk for suicide. They say they are met with outright disbelief from some doctors who refuse to treat it, and tell them to stop self-diagnosing with Dr. Google. With no relief for their debilitating symptoms from our health-care system, they go elsewhere — often to the U.S. — and pay big bucks for diagnosis and treatment.

It’s a polarizing issue at a time when warmer climate is facilitating the rapid spread of blacklegged ticks across Canada. Cases of Lyme disease, transmitted through the bite of an infected tick, are at record highs and expected to rise. Figures for 2018 aren’t yet available, but last year there were 2,025 confirmed and probable cases nationwide, up from 992 in 2016. By comparison, there were 144 cases in 2009. And health officials say the number affected is probably tenfold because the disease is underreported.

“Canada is a new frontier for Lyme disease,” says American investigative journalist Mary Beth Pfeiffer, the author of Lyme: The First Epidemic of Climate Change. “It is a disease that moves into an area, takes root and doesn’t leave.”

Ticks are a greater nuisance in the summer, when people are more likely to venture into brushy and wooded areas. But they’re still around in winter, hiding out in leafy litter.

“Be aware,” says entomologist Curtis Russell, a senior program specialist at Public Health Ontario. “If it’s above 0 C and there’s no snow, blacklegged ticks can still be out and active.”

Earlier this year, the Star wrote about the spike in Lyme cases and about a provincial report by the Lyme Disease and Tick-borne Illnesses Task Force. The task force was appointed by the Ministry of Health to identify ways to improve the health of those living with Lyme. It addressed how patients say the disease is going undetected, misdiagnosed and insufficiently treated. Among its key recommendations is the need to review current testing methods and treatment guidelines. That story drew close to 100 heart-wrenching messages from readers. People were too sick to work, forced into early retirement and had spent their savings on treatment. To better understand this issue, the Star spoke with people on both sides of the divide.

 

TESTING FOR LYME

A long-time lawyer and judge, Bruce Shilton stepped down from the bench on a disability leave. He couldn't continue working so he retired.
A long-time lawyer and judge, Bruce Shilton stepped down from the bench on a disability leave. He couldn’t continue working so he retired.  (Cole Burston)

Bruce Shilton was cutting grass at the family cottage in the Muskoka Lakes when he suddenly felt unsteady and had to sit down.

“It was like this big cloud rolled in.”

He didn’t know it, but that cloud was the first hint of a storm brewing deep within him that would uproot his life.

It was 1998 and Shilton was 49. The father of three had always been active, coaching hockey, T-ball and soccer. But after that unusual episode, he came down with what felt like “the worst flu of my life.”

Around this time, he was appointed as a judge of the Ontario Court of Justice. It should have been a happy time in his life. But he was inexplicably growing weaker, grappling with fatigue, brain fog and headaches. At one point, he lost 20 pounds in two weeks. By 2000, he was actively searching for answers. He saw more than 25 specialists in Ontario — including infectious disease experts, neurologists, cardiologists, nephrologists, gastroenterologists, urologists and chronic fatigue specialists — and underwent a battery of tests.

One of those tests was for Lyme disease. It’s been around for thousands of years, but was first described in the mid-1970s, when Yale University scientists researched a mysterious outbreak of arthritis among adults and children in Lyme, Conn. A bacteria called Borrelia burgdorferi, transmitted through ticks, was the culprit. The ticks pick up the bacteria during blood meals, feeding on animals such as white-footed mice, deer and birds, then pass it on to humans. Ticks must be attached for 36 hours to transmit the bacteria to a human.  (Please see my comment at end of article.)

If Lyme is suspected early, a clinical diagnosis should be made based on whether the patient has a rash that sometimes resembles a bull’s-eye, flu-like symptoms, possible tick exposure and whether Lyme is endemic to the region. Antibiotics should be started immediately and this treatment usually results in a full recovery.

The classic bulls-eye rash that indicates a person has likely been bitten by a tick carrying Lyme disease.
The classic bulls-eye rash that indicates a person has likely been bitten by a tick carrying Lyme disease.  (James Gathany)

The only diagnostic test for Lyme recognized by Canadian, American and European public health authorities, is a two-tiered test. The first test is called an ELISA — enzyme-linked immunosorbent assay. If it’s positive, or indeterminate, then a Western Blot test is done. Both must be positive for a Lyme diagnosis. But because they test for antibodies — and antibodies take four to six weeks to develop in the body — they’re not good at picking up early infection.

Shilton didn’t remember a tick. But they are tiny — adults are the size of a sesame seed — and their bites are painless. And he didn’t remember a rash, but not everyone develops it. However, the wooded area around his cottage was ideal habitat for blacklegged ticks, which moved north from the U.S. into Canada, hitching rides on birds and deer, and are now thriving here. They were first spotted in the province in the 1990s in Long Point Provincial Park on Lake Erie, and now are found throughout most of southern and eastern Ontario.

Shilton wondered if the illness had gone undetected for years, spreading and hiding in different parts of the body, making treatment more challenging. But he tested negative. Medical experts were baffled. Shilton grew sicker.

Once a whip-smart lawyer — he was a prosecutor for 13 years and defence lawyer for 11 years — Shilton struggled as a judge, wrestling with fatigue and headaches. In 2004, he stepped down from the bench on a disability leave and couldn’t continue working so he retired. At one point, he was bedridden for six months because of fatigue.

“I couldn’t even walk to the mailbox at the end of my driveway,” he says. “It just totally overtook my life.”

In 2007, Shilton’s doctor sent his blood to a commercial lab in the U.S. This time, he tested positive.

But many in Canada’s medical community don’t accept results of foreign commercial labs because their validation data is not made public, says Tara Moriarty, an associate professor at the University of Toronto and a Lyme disease researcher.

Tara Moriarty is an associate professor at the University of Toronto and a Lyme disease researcher.
Tara Moriarty is an associate professor at the University of Toronto and a Lyme disease researcher.  (Picasa)

“These companies have been found to return false-positive Lyme disease results for as many as 60 per cent of samples submitted from people who have never had Lyme disease,” says Moriarty. “(That means) at least half of the people diagnosed with Lyme disease do not actually have this infection.”

She admits there are limitations to the two-tiered test and that there are efforts underway in Canada to ensure we know the types of strains that are present. But she cautions against using for-profit commercial labs.

That’s echoed by Dr. Todd Hatchette, president of the Association of Medical Microbiology and Infectious Disease Canada (AMMI Canada), which represents physicians, clinical microbiologists and researchers specializing in medical microbiology and infectious diseases.

“I do feel for people who are suffering from chronic non-specific symptoms and looking for an answer,” says Hatchette, a medical microbiologist and infectious disease physician in Nova Scotia. “But assuming it’s Lyme disease based on nonstandardized testing and alternative methods is not necessarily the best thing for them, because it may prevent them from going on to getting diagnosed with something that can actually be treated.

“If the (two-tiered) tests are not positive, you should be looking for another cause,” he says.

But Vett Lloyd, a biology professor at Mount Allison University in New Brunswick, says most Lyme cases are missed with the standard test. She recently co-authored a study with Dr. Ralph Hawkins, a clinical associate professor at the University of Calgary. Using data from New Brunswick they found the two-tiered tests miss 90 per cent of real Lyme infections. In Ontario, she says about 80 per cent of cases are missed.

“That’s a lot of sick people who are getting negative test results who are being told it’s not Lyme disease, look elsewhere,” says Lloyd. “It’s expensive for the medical system and devastating for the health of those individuals.”

Lloyd says the two-tiered testing is dated and ineffective because it’s based on an older strain of the Lyme disease bacteria, which has evolved and mutated over the years.

Jyotsna Shah is president and CEO of IGeneX, a California commercial laboratory that is the leading alternative Lyme disease testing lab. She says the company’s methods are better at detecting infection than the two-tiered tests recommended by the Centers for Disease Control and Prevention. She says IGeneX looks for more strains of the bacteria, so if someone was bitten in another country it will get picked up because their tests look for bacteria and antibodies. And it covers the full spectrum of disease. It is better at detecting infection early on as well as in the later chronic stage of the disease, when a person may be too sick to make the antibodies the two-tiered tests look for.

“The two-tiered misses a lot of cases,” she said. “We probably (detect) most cases.”

“The tests we have developed so far are very sensitive and very specific,” she said, adding, “We follow the strictest guidelines and we make sure our tests are properly validated.”

Shah said “the false positive is not an issue with us.”

In the summer, New York State’s health department certified the company’s latest Lyme tests for use by physicians after a rigorous process.

Dr. Maureen McShane, who runs a practice in Plattsburgh, N.Y., specializing in Lyme and other tick-borne infections, such as Bartonella and Babesia, calls the two-tiered test a “setup for failure.” She uses IGeneX. But, she says, doctors shouldn’t rely on testing to begin treatment. They should make a clinical diagnosis, which is why “all Canadian doctors, and all U.S. doctors, should be familiar with symptoms of chronic Lyme disease.”

Unable to get treatment in Canada, Shilton saw McShane in New York. But he didn’t have the energy to travel there for regular treatment. In 2011, he started seeing a naturopath in the Toronto area, who’s treated him ever since. It’s been a “a roller-coaster ride,” he says, with periods of feeling good and bad.

“I’m not anywhere near normal,” says Shilton, 69, who lives in the Town of Whitchurch-Stouffville. “But I have some quality of life now, which I haven’t had in a long time.”

He goes to gym a few times week, occasionally plays golf, and last year went on a family vacation to Florida. And, he’s much more social, accepting invitations to dinners and small gatherings.

He calls Lyme “the million-dollar bite.” That’s how much it has cost him in lost salary and treatment costs, the latter amounting to $150,000.

“I’m fortunate,” he says, adding he can afford treatment. “There are many, many, many who aren’t and they suffer in silence, with disabilities and have zero quality of life.”

TREATING LYME

Sue Faber in her home office in front of a wall of research materials on the disease. Faber, a nurse, has been battling Lyme for many years.
Sue Faber in her home office in front of a wall of research materials on the disease. Faber, a nurse, has been battling Lyme for many years.  (Richard Lautens)

In August 2015, Sue Faber hit a breaking point.

For more than a dozen years she had seen an array of specialists for unexplained unusual symptoms — fatigue, forgetfulness, eye floaters, brain fog, a racing heart and a right foot that sometimes dragged. But every blood test, electrocardiogram, ultrasound, MRI and CT scan was negative.

Weeping she begged her doctor, “Is there anything, anything, anything you can think of?’ ” the 41-year-old nurse from Burlington asked.

Her doctor handed over a requisition form for blood work and for the first time requested the lab check for Lyme.

That proved fateful.

The first of the two-tier test, the ELISA, was positive, but the Western Blot was negative.

An infectious disease specialist suspected the ELISA test was a false positive. But Faber urged the doctor to run another Western Blot test, checking for European Lyme, since she had travelled there.

The test was positive.

Finally, a diagnosis. She had late-stage disseminated chronic Lyme disease, which meant the bacteria had spread throughout her body. She was started on daily intravenous antibiotic treatment.

“Within a few days, this brain cloud of fog started to lift,” she says. “It was unbelievable.”

But it didn’t last. When the treatment ended, Faber’s symptoms returned, along with new ones, including numbness in the tongue, tingling in the hands and a buzzing sensation in her legs.

Faber wanted back on the meds. But the specialist refused. That’s because mainstream doctors typically follow the prevailing treatment guidelines developed by the Infectious Diseases Society of America (IDSA), which have been adopted in various countries, including here, where they are promoted by AMMI Canada. They recommend short-term antibiotic use of up to four weeks, with a second course needed sometimes. That should be enough to kill the Lyme bug in most cases, although an estimated 10 to 20 per cent of patients remain ill with what’s called post-treatment Lyme disease syndrome.

However, other doctors follow the competing guidelines of the International Lyme and Associated Diseases Society (ILADS), which is a multidisciplinary medical society that says long-term antibiotics are needed to fight the infection.

“Because there is so much disagreement on that one fact, it has really stymied research and put patients in a position where they can’t get care,” says Pfeiffer, who began writing about Lyme in 2012 and is the only investigative reporter to cover this issue who hasn’t had Lyme disease.

In the U.S. — an estimated 30,000 cases of Lyme are reported annually, but the real number affected may be 300,000 — patient groups have been successful in getting several states to legislate protection for Lyme doctors, letting them determine treatment. Initially, some thought the new laws would have other doctors feeling more comfortable with treating Lyme, but it’s unclear if this has been the case.

“These laws are not fully protective and doctors are still very leery of treating Lyme disease,” says Pfeiffer, who knows of at least one doctor in New York who has been sanctioned. “There are far too few doctors who are willing to treat Lyme disease (in the U.S), other than the hastily diagnosed and hastily treated case.”

Lorraine Johnson, CEO of LymeDisease.org in the U.S., says “physician-protection laws do have the effect of providing a safety net for physicians who treat and that encourages them to follow their conscience.” But she added, Americans still experience a “severe access-to-care problem.”

“We have a problem in the United States, but Canada has that problem squared.”

In Ontario, New Democrat MPP Michael Mantha, a longtime advocate for Lyme patients and part of the provincial task force on Lyme, believes thousands of Canadians have sought treatment in the U.S., some spending hundreds of thousands of dollars. He also knows of people who have gone to Belgium, France and Germany.

He says that while doctors in Ontario do benefit from physician-protection laws, they are hamstrung by the prevailing guidelines. He’d like doctors to have more flexibility in choosing treatment guidelines, adding he’s in favour of anything that will benefit patients.

“Patients are suffering and Lyme disease is real,” says Mantha (Algoma-Manitoulin), who became passionate about the issue after hearing a heartbreaking story from a constituent whose daughter was denied treatment.

Professor Lloyd, of New Brunswick, has had Lyme disease and cancer.

“Both were terrifying,” says Lloyd. “But no one ever argued with me about whether I really had cancer. I was treated with compassion.”

By comparison, Canadian doctors didn’t believe she had Lyme and refused to treat her. They suggested she had Multiple Sclerosis and that she go into a nursing home for the rest of her life because her physical abilities were degenerating. Instead, she went to the U.S., was treated with long-term antibiotics and fully recovered. Lloyd doesn’t know if the bacteria is gone or dormant, capable of flaring up again.

Faber also headed to the U.S., where a doctor in Albany, N.Y., restarted her on antibiotics. Two years later, she’s still on them. To date, she has spent about $30,000 on testing, treatment and medical appointments.

“I’m functional and able to work again,” says the mother of three, who tears up when talking about the devastating toll of Lyme. At one point, she couldn’t remember the birthdates of her children.

AMMI Canada president Hatchette says long-term antibiotic use has never been proven effective and when administered intravenously can be risky, resulting in potentially fatal bloodstream infections.

“At least five randomized controlled trials have looked at prolonged therapy, after the traditional four weeks of therapy, and none of those people in the treatment group did any better than those who received the placebo,” he says.

So how does he explain patients who say they feel better after longer treatment?

“The natural history of (chronic illness) is it tends to wax and wane. It can get worse and it can get better. And we don’t know why,” he says. “There are also anti-inflammatory effects to antibiotics that have nothing to do with treating infection that might be helping an underlying inflammatory condition. And there’s also the placebo effect.”

Last year, a study by Tulane University researchers revealed some monkeys infected with Lyme and treated with the standard four weeks of antibiotics still had the bacteria in their organs up to a year later. And a couple of monkeys actually tested negative for Lyme, but researchers then found the Lyme bacteria in their heart and bladder. The study seems to support claims by patients that the standard testing isn’t always accurate and symptoms will linger after treatment.

Overall, it’s been tough for researchers to explore problems with standard treatments because they can’t get their projects funded or articles published in mainstream medical journals, says Pfeiffer. However, change is coming. More online medical journals are making it easier to get published and non-profit foundations, such as Global Lyme Alliance, have the money to pay for research, she says.

McShane, of Plattsburgh, has seen the benefits of long-term antibiotic treatment in herself and her patients, some of whom she has treated for up to five years. But, she adds, you won’t read about that in major medical journals.

McShane was bitten by a tick while gardening in 2002, and developed flu-like symptoms. Doctors couldn’t explain her deteriorating health, then one of her patients, with similar symptoms, told her he had been successfully treated by Dr. Richard Horowitz, a top Lyme physician in the U.S. Horowitz put McShane on antibiotics for two years, and she recovered.

“If I had not found Dr. Horowitz, I would be in a wheelchair by now,” McShane says. “I was falling, having speech problems, stuttering, choking on my own saliva, facial twitches, weakness, chest pains, shortness of breath.”

Her experience inspired her to open her own practice in 2009. Since then, she has treated around 3,000 people with both antibiotics and herbs. About 90 per cent of her patients are Canadian, 50 per cent of whom are “very angry” with the public health system in Canada and the doctors who refuse to treat them. Her patients include entire families — the reason for that is some research shows Lyme may be transmitted sexually and in utero, she says.

“We need to do long-term studies,” she said. “We’re talking about the health of our future generation.”

Similarly, Faber’s ordeal propelled her into advocacy work. Last year, she co-founded LymeHope, a not-for-profit that provides education to the public and medical community. She has since collected 2,700 letters written by Canadians with Lyme on their struggles with the health-care system and hand-delivered them to the federal health minister’s office. She has launched an online petition that has more than 82,000 signatures calling on government to recognize the seriousness of this disease and take action. And she was the driving force behind the Registered Nurses’ Association of Ontario passing a resolution to advocate, at all levels of government, for the integration of ILADS treatment guidelines.

“What we’ve been asking for all along is action that is grounded in identified needs by patients,” says Faber. “There are massive chasms, with patients on one side and doctors on the other. We have to bridge this gap.”

STAYING IN CANADA

Andrea Smith suffers from chronic Lyme. She first started feeling unwell in 2009. Since the summer of 2017 she has been treated with a combination of herbal and antibiotic treatment and had been feeling much better until this fall. She is confident "this will get figured out."
Andrea Smith suffers from chronic Lyme. She first started feeling unwell in 2009. Since the summer of 2017 she has been treated with a combination of herbal and antibiotic treatment and had been feeling much better until this fall. She is confident “this will get figured out.”  (Steve Russell)

In August 2017, Andrea Smith walked out of a Toronto clinic feeling like a doctor finally had the tools needed to help her.

“It was a huge relief,” says Smith, who had for years bounced among specialists, doctors, naturopaths, criss-crossing between Canada and the U.S. for treatment.

The 49-year-old, who runs a microbrewery on Manitoulin Island on Lake Huron, had finally found someone equipped to deal with Lyme, which she calls “a Pandora’s Box.”

It’s a box she first opened in 2009, while visiting a friend in B.C. She developed a round, expanding rash and felt like she had the flu. Back home, the symptoms worsened. There was muscle and joint pain, extreme fatigue, tingling, headaches, gastrointestinal pain, dizziness, brain fog and her body temperature was out of whack, leading to day and night sweats.

For Smith, who was active running half-marathons, the pain and discomfort became unbearable. She grew depressed and filled with despair.

Doctors didn’t know what was wrong with Smith. None ever asked about a rash, which is characteristic of Lyme, and she never thought it important to mention.

After a two-tiered test came back negative, blood work at IGeneX suggested Lyme. Her doctor gave her the standard antibiotic treatment but wasn’t able to do more.

Jim Wilson, president of the advocacy group Canadian Lyme Disease Foundation (CanLyme), says even though some patients benefit from long-term treatment, doctors won’t go against the prevailing IDSA guidelines because they’re “afraid” of being “policed” by the regulatory colleges, he says.

“We’ve had doctors tell patients, ‘I believe you do have Lyme disease, but I cannot treat you. I have children at home, I’m putting my kids through college, I can’t afford to lose my licence,’” says Wilson.

He says there’s been a chilling effect, with some physicians refusing to treat Lyme or doing so quietly because they don’t want a target on their back.

Bruce Shilton, the retired judge, had actually found two doctors in the Toronto area who would treat Lyme. But shortly after, they were both investigated by the College of Physicians and Surgeons of Ontario (CPSO), prompting one to give up his medical licence and the other to stop seeing Lyme patients altogether.

In Ontario, the CPSO says since 2011 there have been 10 Lyme-related investigations. Eight were launched after patients, or their families, complained doctors did not properly diagnose or treat their Lyme and did not take their concerns seriously. Two investigations were for doctors who treated Lyme.

In general, Wilson says, about 2 per cent of all Canadian doctors face some kind of investigation by their provincial medical colleges. But when it comes to Lyme disease, nearly all doctors known to diagnose and treat Lyme outside the prevailing guidelines have come under scrutiny.

Dr. Ben Boucher is one of them. He was questioned by the College of Physicians and Surgeons of Nova Scotia after two specialists complained that he interfered in the care of their patients. He maintains he just provided a second opinion, but says regulators threatened him with a competency assessment. So after 35 years he closed his Port Hawkesbury practice in 2013. Between 2006 and 2013, he estimates that he treated about 200 Canadians with long-term antibiotics who had travelled there to see him. When he closed his doors, there were about 100 Canadians on the wait list to see him for Lyme treatment.

The way he was treated served as a warning to other doctors, he says.

“It was a signal that you should be very careful treating Lyme and that you should follow their antiquated (IDSA) guidelines,” says Boucher.

When it comes to other infections that require antibiotics, such as pneumonia, acne or cellulitis, patients are treated until the condition improves. So, he questions, why isn’t it the same for Lyme?

Wilson and Boucher are part of an international group that has taken its concerns to the United Nations, alleging that Lyme patients are denied proper care and treatment, which is a human rights violation. And that medical and scientific experts trying to help patients access long-term antibiotics have become the targets of investigations and sanctions.

Mantha, the New Democrat MPP, knows of four Canadian doctors who were treating chronic Lyme here and moved their practices to the U.S. to avoid any hassles from the regulatory colleges.

“They just got frustrated with the system and picked up their practice and moved away,” he says. “They firmly believed people were suffering and went to a jurisdiction where they have the freedom and ability to treat people as they see fit.”

The blacklegged tick that can carry Lyme disease is typically the size of a sesame seed. The is a female which is larger than the male.
The blacklegged tick that can carry Lyme disease is typically the size of a sesame seed. The is a female which is larger than the male.  (Bernard Weil)

In Smith’s case, she couldn’t find a doctor who would treat her, so like many patients she turned to a naturopath and began herbal medication. But it didn’t help. The naturopath recommended more antibiotics, but Smith didn’t know a doctor who would prescribe them. Rather than go to B.C. — the only province where naturopaths can write prescriptions and where many patients travel for long-term antibiotic treatment — she went to Mount Kisco, N.Y., where a doctor treated her with several rounds of antibiotics.

A year later, many symptoms had improved, but not all of them. As she was unable to pay the costs of continuing treatment in the U.S., Smith’s naturopath had a new idea. She suggested a Toronto clinic that was taking patients with chronic Lyme and co-infections. There, doctors, naturopaths, osteopaths and nutritionists work together to treat the whole patient, not just the Lyme disease. Some services are covered by OHIP, such as doctor visits, but lab tests and medication are paid privately or through supplemental insurance.

Smith has been treated there since the summer of 2017 with a combination of herbal and antibiotic treatment. Blood work done there — testing is done in a Public Health Ontario lab — was negative for Lyme, but positive for Rocky Mountain Spotted Fever, another tick-borne disease.

Her doctor there, a family physician trained in emergency medicine, spoke with the Star on the condition that neither he nor the clinic be named. He says diagnosis needs to be a clinical decision, based on patient history. And while tests are helpful, they’re not definitive. He follows ILADS guidelines, and will prescribe long-term antibiotics, often more than one drug at a time.

“Many doctors and patients are uncomfortable with uncertainty, and unfortunately there is a lot of uncertainty with Lyme disease,” he says. “I will go through all the potential risks with long-term antibiotic therapy and if (patients) are in agreement we will go and start on a trial of therapy. And we monitor them closely and try to mitigate the risk as much as possible.”

To date, Smith has spent about $20,000 on treatment and drugs, in total. In the spring and summer, she was feeling better than she had in a long time, even getting her exercise bike and rowing machine out of the garage where they had been stored for years.

“I felt truly amazing, but some symptoms have slowly returned,” says Smith, whose health started declining in the fall. “It’s frustrating, but I remain optimistic … This will get figured out.”

Isabel Teotonio is a Toronto-based reporter covering education. Follow her on Twitter: @Izzy74

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**Comment**

Doctors fearing to treat Lyme is not new. It’s been this way for decades and many have had to close their practices or have been sanctioned and have had to pay hefty fines.  My own doctor went through this gauntlet, paying 50K to protect his practice.  This is why LLMD’s do not accept insurance.  It’s quite often the insurance companies turning them in.  

Once again, the proliferation of ticks & Lyme has NOTHING to do with climate change:  https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/  The reporter should know this as the information is from a Canadian researcher who himself is infected!  Warm winters are lethal to deer ticks.  

It does NOT take 36 hours for transmission:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/

The CDC 2-tiered testing is abysmal and misses over half of all cases.  Any “false positives” are dwarfed in comparison to all the devastating, false negatives.  People with a negative result are told, “Go home and be well,” when they very well could have tick-borne infections that could kill them outright.

Many don’t see the tick or the rash and yet they continue to call it the “classic” bullseye rash.  That’s a myth that needs to die.

 

Five Genera of Pathogens Found in Ticks On Russian Dogs

https://www.ncbi.nlm.nih.gov/m/pubmed/30428925/

Dog survey in Russian veterinary hospitals: tick identification and molecular detection of tick-borne pathogens.

Livanova NN, et al. Parasit Vectors. 2018.

Abstract

BACKGROUND: Species of Canidae in Russia can be infested with up to 24 different tick species; however, the frequency of different tick species infesting domestic dogs across Russia is not known. In addition, tick-borne disease risks for domestic dogs in Russia are not well quantified. The goal of this study was to conduct a nationwide survey of ticks collected from infested dogs admitted to veterinary clinics in Russian cities and to identify pathogens found in these ticks.

METHODS: Ticks feeding on dogs admitted to 32 veterinary clinics in 27 major cities across Russia were preserved in ethanol and submitted to a central facility for examination. After identification, each tick was evaluated for infection with known tick-borne pathogens using PCR.

RESULTS: There were 990 individual ticks collected from 636 dogs. All collected ticks belonged to the Ixodidae (hard ticks) and represented 11 species of four genera, Dermacentor, Ixodes, Rhipicephalus and Haemaphysalis. Four most common tick species were D. reticulatus, followed by I. persulcatus, I. ricinus and R. sanguineus. Ixodes persulcatus ticks were found to be infected with 10 different pathogens, and ticks of this species were more frequently infected than either D. reticulatus or I. ricinus. Ixodes persulcatus females were also more frequently co-infected with two or more pathogens than any other tick.

Pathogenic species of five genera were detected in ticks:

  • Anaplasma centrale, A. phagocytophilum & A. marginale (Anaplasma)
  • Babesia canis, B. microti, B. venatorum, B. divergens, B. crassa & B. vogeli (Babesia)
  • Borrelia miyamotoi, B. afzelii and B. garinii (Borrelia)
  • Ehrlichia muris, E. canis and E. ruminantu (Ehrlichia)
  • Theileria cervi (Theileria – a parasitic protozoan)
Anaplasma marginale, E. canis, B. crassa, B. vogeli and T. cervi were detected in I. persulcatus, and Babesia canis in D. marginatum, for the first time in Russia.

CONCLUSIONS: Multiple ticks from four genera and 11 species of the family Ixodidae were collected from domestic dogs across Russia. These ticks commonly carry pathogens and act as disease vectors. Ixodes persulcatus ticks present the greatest risk for transmission of multiple arthropod-borne pathogens.

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**Comment**

It’s getting harder and harder for The Cabal to hide the polymicrobial nature of Lyme/MSIDS.  The data just keeps pouring in:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

For the first time, Garg et al. show a 85% probability for multiple infections including not only tick-borne pathogens but also opportunistic microbes such as EBV and other viruses.

I’m thankful they included Bartonella as that one is often omitted but definitely a player. I’m also thankful for the mention of viruses as they too are in the mix. The mention of the persister form must be recognized as well as many out there deny its existence.

Key Quote: “Our findings recognize that microbial infections in patients suffering from TBDs do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes.”

But there is another important point.

According to this review, 83% of all commercial tests focus only on Lyme (borrelia), despite the fact we are infected with more than one microbe.

And those tests miss half of all cases:  

https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/  ...with the C6 Elisa its around 50% sensitive (in the context of the two tiered testing system on its own it has a sensitivity of 75%) because it misses about half of true positive cases….The Western Blot also has many problems with sensitivity at all stages but especially within the first month and again later on the more chronic it becomes.If you take the terrible sensitivity of both tests in the two tiered system you will start to see how testing positive consecutively on both is very unlikely, mathematically improbable and biologically almost impossible unless you are in the HLA autoimmune group which is comparatively rare.

https://madisonarealymesupportgroup.com/2018/01/16/2-tier-lyme-testing-missed-85-7-of-patients-milford-hospital/  Dr. Sin Lee identifying faulty serology tests for Lyme disease in 85.7% of the walk-in patients in the Emergency Room of Milford Hospital.

Please note that all the studies showing the polymicrobial nature of tick borne illness  are foreign.

The Cabal has everyone in the U.S. in a head-lock.

Will the real researchers please stand up and be counted?