Archive for the ‘research’ Category

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

Carmen Silvia Molleis Galego Miziara,I,* Virginia Aparecida Gelmeti Serrano,I and Natalino YoshinariII
Author information Article notes Copyright and License information Disclaimer

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.

___________________

**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.

 

 

Category:

Lyme, research, Testing, Ticks, Transmission

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/

Category:

Ehrlichiosis, Inflammation, research, Testing, Ticks, Treatment

Research News: Dr. Steven Phillips

https://www.stevenphillipsmd.com

Research News

In the link above, Dr. Steven Phillips talks about two research projects he is working on.

  1. The first project is a joint venture between Duke, Johns Hopkins, and Tulane which was fully funded by the Steven and Alexandra Cohen Foundation. The goal is to use a specialized high thoughput proteomics platform to find new drugs to treat Lyme and bartonella. It’s the same precision medicine technology used to find drugs for cancer and HIV, only this time it’s finally turned toward eradicating Lyme and Bartonella. And we already have lots of initial hits!
  2. The second project is further along thanks to funding from Bay Area Lyme Foundation. We’ve moved forward with starting drug formulation and laboratory testing. I’m working alongside Dr. Neil Spector of Duke, Dana Parish, Dr. Ed Breitschwerdt and his team from Galaxy Diagnostics and NC State, and too many others to list here. We’re developing what we believe will be a game-changing drug for the treatment of bartonella and Lyme, made possible by this joint-development effort involving some of the smartest folks from academia, the private sector, and the non-profit world.  First, we plan to demonstrate in the test tube that we can eradicate these bacteria after they’ve infected cells. If all goes well, then it’s on to an animal study, and from there, human trials. This project has been funded by Bay Area Lyme Foundation, an organization which leads the fight against Lyme disease by funding research with a goal to put an end to this pandemic. We are also funded by our publicly announced co-funding partnership with Lyme Connection, a premier non-profit Lyme foundation under the auspices of the Town of Ridgefield, CT. Unlike general pool donations where you don’t know where your donation is going, with our co-funding effort, the following link specifically directs that donations go toward developing this new drug:  Click on link to Make a Tax Deductible Donation to Fund Our Research:  https://co.clickandpledge.com/sp/d1/default.aspx?wid=134576

A big thank you to our newest research funding partner, RescueRenovations.
​
They do general contracting and mold abatement and will donate 5% of any job to our research if you mention donating to Project Bartonella. You can contact them at RescueRenovations.net and if you know of another company that also wants to become a research funding partner, please let us know.

More on Dr. Phillips:  https://madisonarealymesupportgroup.com/2017/10/04/dr-steven-phillips-writing-book-on-lyme-and-bartonella-treatment/

https://madisonarealymesupportgroup.com/2016/07/11/dr-phillips-completely-trounces-cdc/

https://madisonarealymesupportgroup.com/2016/07/01/unedited-interview-with-dr-phillips-fox-5-ny/

https://madisonarealymesupportgroup.com/2016/04/03/dr-phillips-does-it-again/

 

Category:

Activism, Bartonella, Lyme, research, Treatment

Doctors, Public, Left in the Dark on Danger to Babies (From Lyme)

https://www.thechronicleherald.ca/opinion/doctors-public-left-in-the-dark-on-danger-to-babies-270535/

Dec. 21, 2018

The Chronicle Herald

OPINION: Doctors, public left in the dark on danger to babies

Jane Bailey

The following statement is false. You can only get Lyme disease from a black-legged tick. The next two statements are true. You can pass Lyme disease to your unborn baby. Your baby can suffer very serious adverse outcomes, including from miscarriage, stillbirth, and newborn death, as well as serious neurological development issues, and various other illnesses and developmental delays/issues as a result of Lyme infection during pregnancy.

Earlier this fall, on Nov. 12, a new, peer reviewed research article was published in the highly reputable science and medical journal PLOS ONE. It was authored by several senior Public Health Agency of Canada (PHAC) scientists and one Centers for Disease Control and Prevention (CDC) scientist. The paper unequivocally acknowledged mother-to-fetus (transplacental) transmission of Lyme disease as a fact.

This newly published paper also looked at case reports and studies from the past 30-plus years and found that there was a significant statistical difference in adverse outcomes for baby if the mother was infected with Lyme and had been untreated during pregnancy.

In their meta-analysis of several studies, 50 per cent of untreated women experienced fetal adverse outcomes compared to 11 per cent of treated women. In those cases, the authors state:

“Across 59 cases, negative outcomes for the fetus or newborn occurred in 61 per cent of pregnancies … (they) ranged from spontaneous miscarriage … fetal death and stillbirth … and death shortly following birth … to a range of congenital abnormalities and health issues.“

This is beyond alarming. It is an extremely important paper. And yet, not a word in the press, or notification to our doctors, nor, most importantly, to the public.

As far back as 1986, both the World Health Organization (WHO) and the CDC acknowledged mother-to-fetus transmission, and warned of possible adverse outcomes for baby. In June 1988, Health Canada released its own report acknowledging the same thing.

Nobody did anything. The information just sat there, hiding in plain sight.

In the summer of this year, the federal parliament of France, the Assemblée Nationale, issued a statement from the minister of health acknowledging mother-to-fetus transmission of Lyme disease.

And the WHO, after almost 10 years of considering the evidence, earlier this year (June 2018) issued a new International Classification of Diseases (ICD) code for congenital Lyme borreliosis (meaning babies born with Lyme disease) for physicians around the world. But on Monday (Dec. 17), the new WHO ICD-11 code for congenital Lyme borreliosis was the only code to be suddenly deleted from more than 55,000 new ICD-11 codes. At this point, it’s unclear why.

Something very strange and very unsettling is happening.

Where is Canada on this issue? Why isn’t Health Canada and the Public Health Agency of Canada saying anything? Why aren’t our public health departments and health authorities notifying doctors, women and parents-to-be of this very important issue? There should be national outrage over this appalling state of affairs regarding the non-notification of mother-to-fetus infection of Lyme disease. It is, actually, scandalous that the authorities have kept this from the public.

This mode of transmission changes everything.

Since 2014, I have corresponded on many Lyme issues with Dr. Robert Strang, chief medical officer for Nova Scotia, and Dr. Todd Hatchette, chief microbiologist for the Nova Scotia Health Authority and an infectious diseases doctor. They either denied that transplacental Lyme disease exists, or they refused to discuss it with me. They have both been provided with much of the 30-plus years of evidence, the same evidence considered by the scientists in the PLOS ONE article, the same evidence considered by the WHO, the CDC and PHAC.

At a meeting I attended at the Department of Health and Wellness on Sept. 1, 2016, I even had autopsy reports and photographs of babies with unequivocal evidence of the Lyme disease bacteria in their tissues and organs — everybody at the table declined to look at this evidence. As difficult and heartbreaking as such material is, this kind of behaviour from a department responsible for our health is unacceptable, and contributes to perpetuating the problem of no action.

It has been suggested by me, many times, that our doctors, and the public, be notified of the fact of mother-to-baby transmission of Lyme disease. All of my requests have been refused. On May 31, 2016, I was even told by Strang,

“I will no longer be responding to inquiries from you.”

It is despicable that the alarm has not been raised. And by not doing so, it could be argued, much unnecessary pain and suffering has been caused to many women, parents and children.

In a recent email (Oct. 23) Strang wrote to me regarding the above PLOS ONE research article, he stated,

“As you may be aware from the recent Lyme Hope meeting with PHAC, our national Public Health Agency has recently completed a comprehensive review of the evidence on Lyme disease in pregnancy. This review is undergoing peer review as part of possible publication. My public health practice will certainly follow the outcomes of this work.”

What Strang did not know when he sent me that email was that I was actually at that meeting with Lyme Hope and PHAC on Oct. 5 in Ottawa. I advised Strang of this fact, and of the fact that the scientists around the table, as well as one MD at that meeting, plus two MDs on the phone (a pediatric Lyme disease specialist, and an internal medicine specialist), the president of PHAC, and the director of the Infectious Diseases Branch, PHAC, all agreed that transplacental transmission was possible. Strang’s next response to me was, “I will not engage in an ongoing dialogue with you regarding this issue.” Appalling!

Strang is now silent on this issue. He has not made any public statement since the publication of the research article, neither has he responded to my last article on Lyme disease (“Lyme disease tunnel vision: Provincial authorities must expand horizons, review medial evidence”) published by The Chronicle Herald on Nov. 3. Why this silence? There is no getting around this, no “positive spin” can be put on this. The public, and our doctors, need to know. Shame on him. He, too, has the suffering of many on his conscience; or he should have.

With regard to mother-to-baby Lyme disease, doctors and women should know that babies and children present with symptoms very differently from adults.

For those of you reading who may have concerns regarding possible transplacental (mother-to-child) transmission of Lyme disease, I would direct you to the LymeHope.ca resources web-page. There you will find many credible and reputable resources and evidence that you can use to take to your doctor and discuss your concerns.

Jane Bailey lives in Wolfville. She has science and education diplomas and is a member of The Royal Society for Public Health.

__________________

**Comment**

AMEN!

PLOS ONE article:  https://madisonarealymesupportgroup.com/2018/12/12/systematic-review-on-gestational-lyme/

For more:  https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/

https://madisonarealymesupportgroup.com/2018/02/26/transplacental-transmission-fetal-damage-with-lyme-disease/

https://madisonarealymesupportgroup.com/2018/05/24/new-berlin-mom-given-life-altering-lyme-disease-diagnoses-after-pregnancy/

https://madisonarealymesupportgroup.com/2018/08/16/why-do-officials-continue-to-deny-gestational-lyme/

https://madisonarealymesupportgroup.com/2018/07/24/congenital-transmission-of-lyme-myth-or-reality/

https://madisonarealymesupportgroup.com/2018/10/05/canada-acknowledges-maternal-fetal-transmission-of-lyme-disease/

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

https://madisonarealymesupportgroup.com/2018/08/16/why-do-officials-continue-to-deny-gestational-lyme/

https://madisonarealymesupportgroup.com/2017/10/15/pregnancy-in-lyme-dr-ann-corson/

 

 

 

 

 

Category:

Activism, Lyme, research, Transmission

Diagnosing LD in Children With Neuropsychiatric Illness

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

July 27, 2018

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.

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**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 studies, doxycycline 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.

 

 

 

 

 

 

 

Category:

Lyme, Psychological Aspects, research, Testing, Treatment