Archive for the ‘Testing’ Category

The Battle to Fight Lyme Disease Continues

https://dailygazette.com/article/2018/02/24/10-bars-with-great-atmosphere

The battle to fight Lyme disease continues

Informational night set Tuesday at Guilderland Town Hall, NY

Bill Buell @buell_bill | April 8, 2018 0

web ticks2Holly Ahern, left, and Linda Reeves have both seen the effects of Lyme disease.  PHOTOGRAPHER: PHOTOS PROVIDED

When the Centers for Disease Control and Prevention web site informs its visitors that “most cases of Lyme disease can be treated successfully with a few weeks of antibiotics,” Holly Ahern must resist the urge to scream.

“It’s very complicated, and for the CDC to set up a bunch of guidelines from incomplete research done in the 1970s and ’80s is very frustrating,” said Ahern, a 1977 Scotia-Glenville High School graduate who has spent the last 20 years as a professor of microbiology at SUNY-Adirondack in Queensbury. “We need to change our approach to everything about Lyme disease, but there are an important group of individuals who are still in power that refuse to believe they were half wrong and will not yield the stage. We need more research. We need better testing.”

While she continues to emphasize the need for better “science” when it comes to Lyme disease, Ahern’s focus will switch to public awareness Tuesday at 7 p.m. with a presentation on Lyme disease and other tick-borne illnesses at the Guilderland Town Hall. The presentation is being offered by the Lyme Action Network, a not-for-profit group created by Ahern and Christina T. Fisk back in 2009. Both women had daughters they felt were negatively impacted by what they portray as the poor CDC standard of care available to Lyme patients.

“What we’re doing is teaching people about the disease, and trying to dispel some of the hard-core myths about it,” said Ahern. “The bullseye rash, that’s just one of them.  That doesn’t happen for most of the patients. It didn’t happen to my daughter.”

Ahern’s daughter Kayleigh, an All-American swimmer at Union College as a freshman, was bitten by a tick in 2009.

“Within two weeks of competing at the highest level, she came back from nationals and was bedridden,” remembered Ahern. “She didn’t get out of bed for two years. We were only able to get a correct diagnosis after my husband had been at an educational meeting about Lyme disease. We decided to have her tested again and this time she was positive. The tests are so poor. They’re wrong half of the time.”

While Ahern’s daughter struggled through a long recovery, Linda Reeves is still waiting for the time when she feels good again. Good enough to work in her garden or good enough to play tennis, two passions of her’s she’s enjoyed for 40 years.

“I go for short walks now to the end of my street and back,” said Reeves, who grew up in Burnt Hills and Ballston Spa and now lives in Guilderland. “That’s my big accomplishment for the day. It’s effected my neurological system, so I still have mobility issues. I have orthopedic and circulation problems. Along with playing tennis three or four times a week and gardening, I also was a long-distance walker. Suddenly, one day, I couldn’t do anything.”

Reeves began feeling ill in March of 2016, and says she wasn’t even diagnosed correctly until 15 months later.

“I went to countless doctors who laughed at me and told me I was wasting their time,” she said. “I would come home and read medical journal after medical journal to try to find out what was wrong with me, because it seemed as though the doctors weren’t really interested. And if you read people’s stories this is the kind of thing that happens all the time. There’s so much miss-information out there. The doctors don’t recognize the symptoms and they’re relying on faulty tests.”

It is Reeves, with the help of the town of Guilderland and state Senator George Amedore, R-Rotterdam, who is putting together Tuesday night’s informational get-together. Reeves is hopeful the public continues to become more informed, and that things will get better. She said a new book, “Lyme: The First Epidemic of Climate Change,” by Mary Beth Pfeiffer, was released just last week, and physicians such as Dr. Kenneth Liegner of Pawling and Dr. Daniel Cameron of Mt. Kisco continue their strenuous efforts to improve medical science’s response to the disease. Back in 2010, Liegner said the following:

“In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.“

Both Liegner and Cameron have been engaged in the fight to educate doctors and the public about Lyme disease for more than 30 years.

“Doctors are still divided as to how best approach the complicated issues relating to Lyme disease,” Cameron said by phone last week. “Physicians are willing to accept patients for early treatment of the rash by prescribing 21 days of antibiotics, but they’re not so comfortable dealing with the long-term, chronic complications associated with Lyme disease. It is so complicated. There’s no damage to your organs so the physical exam looks good, and the testing for the bacteria is not very reliable. It can get very frustrating, but I encourage doctors to revisit the situation. I tell patients to find a doctor who will revisit the problem, and maybe send you to a specialist. Everyone involved has to have a better understanding of all the problems you come up against.”

Physicians like Liegner and Cameron are a godsend according to Ahern, but they’re too few and far between.

“People have to advocate for themselves when they’re dealing with their doctors,” she said. “People have to be informed and have conversations with their health care providers. I’m doing this so that maybe other mothers don’t have to go through the anguish that I did. Don’t be afraid to ask questions. Stand up to your doctor. This is a two-way street.”

Ahern wishes she knew back in 2010 what she knows now about Lyme disease.

“We were told if there’s no bullseye rash there’s no Lyme disease,” she said. “I didn’t know. I think about how if I had stood my ground back then maybe things would have turned out a lot better. I try not to dwell on that too much, but I would like to help other people avoid that kind of situation. About the only thing medical science agrees on is that the earlier you’re diagnosed, the easier it is to get better. That’s why we have to have better testing.”

There are efforts under way to improve the medical response to Lyme disease. In 2015, then Republican Congressman in the 19th District, Chris Gibson, spearheaded legislation that prioritized Lyme disease research, and at the state level just this past week state Senator James L. Seward, R-Oneonta, pushed through legislation that calls upon the state to investigate the impact Lyme and tick-borne diseases may have on mental health.

“We know more today than ever before about these debilitating ailments and are making strides in prevention and treatment,” Seward said in a statement to the press last week. “Studying Lyme in relation to mental health is a logical step forward that can lead to improved diagnosis and treatment plans that can improve patient outcomes in the short and long term.”

A tick-borne disease caused by the bacterium Borrelia burgdorferi, Lyme disease cases have increased dramatically since the CDC began monitoring the problem in the early 1990s. According to Vector Disease Control International, a group created in 1992 to help communities manage their mosquito population, the increase in Lyme disease can be attributed to a “northern expansion” of the ticks that carry the bacteria, and that the shift northward is “suspected to be associated with global climate change.”

Whatever the reason, Lyme disease – the name comes from a small town in Connecticut where a cluster of cases were recognized in 1977 – is here and it isn’t going anywhere right away. And, there’s something else people have to worry about.

“Insurance companies want nothing to do with you,” said Reeves. “I felt like I was really out there on my own financially and it’s the same with most other people. Parents have to take out loans to take care of their kids who get Lyme disease. It’s unconscionable to me. You have to worry about getting better physically and then you have to worry about getting better financially.“

Town of Guilderland supervisor Peter G. Barber is hoping to see a good turnout Tuesday night.

“The town is pleased to co-sponsor this important presentation as we open the town’s open spaces this spring,” said Barber. “Professor Ahern’s presentation and Senator Amedore’s update will provide town residents with necessary information for their safe enjoyment of outdoor activities.”

 

 

 

Category:

Activism, Lyme, Testing

Zoonotic Babesia Microti in the NW U.S.: Evidence for the Expansion of a Specific Parasite Lineage

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0193837

Zoonotic Babesia microti in the northeastern U.S.: Evidence for the expansion of a specific parasite lineage

 Abstract
The recent range expansion of human babesiosis in the northeastern United States, once found only in restricted coastal sites, is not well understood. This study sought to utilize a large number of samples to examine the population structure of the parasites on a fine scale to provide insights into the mode of emergence across the region. 228 B. microti samples collected in endemic northeastern U.S. sites were genotyped using published Variable number tandem repeat (VNTR) markers. The genetic diversity and population structure were analysed on a geographic scale using Phyloviz and TESS, programs that utilize two different methods to identify population membership without predefined population data. Three distinct populations were detected in northeastern US, each dominated by a single ancestral type. In contrast to the limited range of the Nantucket and Cape Cod populations, the mainland population dominated from New Jersey eastward to Boston. Ancestral populations of B. microti were sufficiently isolated to differentiate into distinct populations. Despite this, a single population was detected across a large geographic area of the northeast that historically had at least 3 distinct foci of transmission, central New Jersey, Long Island and southeastern Connecticut. We conclude that a single B. microti genotype has expanded across the northeastern U.S. The biological attributes associated with this parasite genotype that have contributed to such a selective sweep remain to be identified.

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**Comment**

More on Babesia:  https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

https://madisonarealymesupportgroup.com/2018/03/22/what-is-air-hunger-anyway/

https://madisonarealymesupportgroup.com/2018/01/24/phase-ii-malaria-meds-100-cured-good-for-babesia/

https://madisonarealymesupportgroup.com/2018/02/20/babesia-and-heart-issues/

Category:

Babesia, research, Testing, Treatment

Novel Viruses Found in Lone Star, American Dog, & Black Legged Ticks

http://msphere.asm.org/content/3/2/e00614-17

Identification of Novel Viruses in Amblyomma americanum, Dermacentor variabilis, and Ixodes scapularis Ticks

Rafal Tokarz, Stephen Sameroff, Teresa Tagliafierro, Komal Jain, Simon H. Williams, D. Moses Cucura, Ilia Rochlin, Javier Monzon, Giovanna Carpi, Danielle Tufts, Maria Diuk-Wasser, Jory Brinkerhoff, W. Ian Lipkin
James M. Pipas, Editor
DOI: 10.1128/mSphere.00614-17
ABSTRACT

Ticks carry a wide range of known human and animal pathogens and are postulated to carry others with the potential to cause disease. Here we report a discovery effort wherein unbiased high-throughput sequencing was used to characterize the virome of 2,021 ticks, including Ixodes scapularis (n = 1,138), Amblyomma americanum (n = 720), and Dermacentor variabilis (n = 163), collected in New York, Connecticut, and Virginia in 2015 and 2016. We identified 33 viruses, including 24 putative novel viral species. The most frequently detected viruses were phylogenetically related to members of the Bunyaviridae and Rhabdoviridae families, as well as the recently proposed Chuviridae. Our work expands our understanding of tick viromes and underscores the high viral diversity that is present in ticks.

IMPORTANCE The incidence of tick-borne disease is increasing, driven by rapid geographical expansion of ticks and the discovery of new tick-associated pathogens. The examination of the tick microbiome is essential in order to understand the relationship between microbes and their tick hosts and to facilitate the identification of new tick-borne pathogens. Genomic analyses using unbiased high-throughput sequencing platforms have proven valuable for investigations of tick bacterial diversity, but the examination of tick viromes has historically not been well explored. By performing a comprehensive virome analysis of the three primary tick species associated with human disease in the United States, we gained substantial insight into tick virome diversity and can begin to assess a potential role of these viruses in the tick life cycle.

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**Comment**

The article states the high diversity of viruses was not unexpected and that some of these viruses have not been found in vertebrates and are not likely horizontally transmitted but that they are phylogenetically related to human & animal pathogens.  They also state some of the viruses do not replicate within the tick but rather parasitize hosts within the tick such as fungus or nematode.

 

Interestingly, the black legged tick, normally considered the biggest player in transmitting Lyme Disease, also had three times more viruses than the Lone Star Tick.

 

Category:

research, Testing, Ticks, Viruses

Young Woman With Lyme Takes Her Life

https://www.poughkeepsiejournal.com/story/opinion/2018/04/06/familys-lyme-tragedy/493872002/

Family’s battle with Lyme ends in deep tragedy

Kaethe Mitchell Published  April 6, 2018

Our two daughters were ill for years and were misdiagnosed by countless specialists. Niki never had a tick bite that we saw nor a rash. Keara had a strange bite with a large solid oval rash around it when she was 2 years old; her pediatrician misdiagnosed it as a spider bite and she was never treated. Each child began to become ill around the age of 11 or so. Niki tested negative on the conventional two-tier Lyme testing and became sicker over the next 2 1/2 years until finally testing positive with IGeneX Labs. About a year later Keara would test positive with IGeneX as well. They both had Lyme, bartonella, and babesiosis. 

Niki tolerated most antibiotics, treatments, and supplements fairly well while Keara struggled with each one she tried. Niki had to drop out of her first year of college due to pain, brain fog and the brutal side effects of the treatments and, as she slowly began to regain part of her health over several years, she was able to gradually return to studying to become a veterinarian. Keara’s worsening condition forced her to drop out of high school and to take homebound teaching for a year and a half but she was able to return to school for her senior year to take just enough credits to graduate.

KEARA’S LIFE: Binghamton woman, 19, loved fashion, adventure

FORUM SET: Register today and attend Lyme forum on April 17 — and get answers: Editorial

Keara began working in retail and wanted nothing more than to be like her peers. She was devastated that she was unable to go to college. She wanted to travel the world but was riddled with pain and disability.

 In February 2017 she took her own life at the age of 19. Her sister Niki will never have her little sister by her side as her maid of honor when she marries one day. Her brother will never be able to sing and play guitar and piano with Keara again. We, her parents, will never see our daughter grow and thrive, all due to the misdiagnosis of her tickborne diseases that affected every organ and every system of her body. We will never wrap our arms around Keara to hug and kiss her ever again.

Today I came across a small plastic bag of Keara’s trash. Finding and holding the empty, discarded false eyelashes package I found in the bag knocked the wind right out of me.  The old makeup brush in there still has her precious DNA attached to the dirty bristles, doesn’t it? Perhaps there’s some scant remnant of her scent, her essence on the brush. Grief rises up unexpectedly every day, several times a day now.

The outdated and ineffective Lyme guidelines caused both our daughters such immense and unnecessary suffering and yet as parents the guilt that we could have, should have, and would have done more will always plague us. Why didn’t we insist on more specialists, earlier recognition and more treatments? Why weren’t we able to protect our children? Why did we trust the doctors and tests? Why does the medical community and the CDC continue to throw up roadblocks to prevent early detection and adequate treatment? How many lives will continue to be devastated?

 

Binghamton resident Kaethe Mitchell is a school nurse with the Binghamton City School District and belongs to the Southern Tier Lyme Support, Inc., https://www.southerntierlymesupport.org. The Poughkeepsie Journal is holding a public form about Lyme at 6 p.m. on April 17 at Marist College. Attendees must register in advance at https://tickets.poughkeepsiejournal.com/e/lyme. The event is almost sold out, and the Journal plans to carry video coverage of the forum on its website, www.poughkeepsiejournal.com

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**Comment**
Stories like this one are the unfortunate truth many families have to live with.  Suicide is a very real issue that needs to be taken seriously with Lyme/MSIDS patients.
Please support patients and believe them.  They are swimming against an ocean current of tidal proportions.  If this is you, please know you aren’t alone and you can get support.  Start with your local Lyme/MSIDS support group in your state.  For a great list:  https://rawlsmd.com/lyme-support?

Category:

Activism, Babesia, Bartonella, Lyme, Testing

Pathogens From Ticks in UK Cats

https://www.ncbi.nlm.nih.gov/pubmed/29558992

Parasit Vectors. 2018 Mar 20;11(1):201. doi: 10.1186/s13071-018-2789-5.

Anaplasma phagocytophilum, Bartonella spp., haemoplasma species and Hepatozoon spp. in ticks infesting cats: a large-scale survey.

Duplan F1, Davies S2, Filler S3, Abdullah S2, Keyte S1, Newbury H4, Helps CR5, Wall R2, Tasker S6,7.
Abstract

BACKGROUND:

Ticks derived from cats have rarely been evaluated for the presence of pathogens. The aim of this study was to determine the prevalence of Anaplasma phagocytophilum, Bartonella spp., haemoplasma species and Hepatozoon spp. in ticks collected from cats in the UK.

METHODS:

Five hundred and forty DNA samples extracted from 540 ticks collected from cats presenting to veterinarians in UK practices were used. Samples underwent a conventional generic PCR assay for detection of Hepatozoon spp. and real-time quantitative PCR assays for detection of Anaplasma phagocytophilum and three feline haemoplasma species and a generic qPCR for detection of Bartonella spp. Feline 28S rDNA served as an endogenous internal PCR control and was assessed within the haemoplasma qPCR assays. Samples positive on the conventional and quantitative generic PCRs were submitted for DNA sequencing for species identification.

RESULTS:

Feline 28S rDNA was amplified from 475 of the 540 (88.0%) ticks. No evidence of PCR inhibition was found using an internal amplification control. Of 540 ticks, 19 (3.5%) contained DNA from one of the tick-borne pathogens evaluated. Pathogens detected were: A. phagocytophilum (n = 5; 0.9%), Bartonella spp. (n = 7; 1.3%) [including Bartonella henselae (n = 3; 0.6%) and Bartonella clarridgeiae (n = 1; 0.2%)], haemoplasma species (n = 5; 0.9%), “Candidatus Mycoplasma haemominutum” (n = 3; 0.6%), Mycoplasma haemofelis (n = 1; 0.2%), “Candidatus Mycoplasma turicensis” (n = 1; 0.2%), Hepatozoon spp. (n = 2; 0.4%), Hepatozoon felis (n = 1; 0.2%) and Hepatozoon silvestris (n = 1; 0.2%).

CONCLUSION:

These data provide important information on the prevalence of tick-borne pathogens in ticks infesting cats, with the identification of haemoplasma species, A. phagocytophilum, H. felis and Bartonella spp. (including B. henselae and B. clarridgeiae). This study also documents the first report of H. silvestris in ticks collected from domestic cats.

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**Comment**

More and more is coming out about these same pathogens causing disease in humans.

Bartonella clarridgeiae has caused Cat Scratch Disease in humans:  http://jcm.asm.org/content/38/8/2943.full

Haemoplasma species (Mycoplasma) can be chronic in cats and cause anemia:  http://journals.sagepub.com/doi/abs/10.1177/1098612X15573562?journalCode=jfma

Humans can be infected with Myco:  https://madisonarealymesupportgroup.com/2017/07/16/mycoplasma-and-other-intracellular-bacterial-infections-in-rheumatic-diseases-comorbid-condition-or-cause/

As to Hepatozoon spp. (felis & silvestris):  http://www.troccap.com/canine-guidelines/vector-borne-parasites/hepatozoon/Public health considerations
Hepatozoon infection in humans has not been described except for a single case in which the species was not identified.  So it’s been found in at least one human.  The thing is they aren’t regularly looking for it.

Transmission route:  ingestion of tick vectors (but how’d the ONE human get it?  I doubt they were eating ticks!)

Clinical signs
H.canis infects the hemolymphatic tissues and causes anemia and lethargy. Infection varies from being subclinical to severe with lethargy, fever, cachexia and pale mucous membranes due to anemia.
Diagnosis
It’s diagnosed by microscopic detection of intracellular H. canis gamonts in neutrophils and monocytes in stained capillary blood smears. The degree of parasitaemia is directly proportional to the severity of clinical signs. PCR of whole blood for H. canis detection is sensitive and specific.
Treatment
It is treated with imidocarb dipropionate at 5-6 mg/kg IM or SC every 14 days until gamonts are no longer present in blood smears. The decrease of parasitemia is slow and usually requires several repeated imidocarb treatments.

More in ticks:  https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/  (The actual number is 16 and counting)

Category:

Anaplasmosis, Bartonella, research, Testing, Ticks