Archive for the ‘Testing’ Category

Northern & Southern CA Cats have Bartonella and Rickettsia – Proven by 16S rRNA Next Gen Sequencing

https://www.ncbi.nlm.nih.gov/m/pubmed/29893631/

Assessing Cat Flea Microbiomes in Northern and Southern California by 16S rRNA Next-Generation Sequencing.

Vasconcelos EJR, et al. Vector Borne Zoonotic Dis. 2018.

Abstract
Flea-borne diseases (FBDs) impact both human and animal health worldwide. Because adult fleas are obligately hematophagous and can harbor potential pathogens, fleas act as ectoparasites of vertebrates, as well as zoonotic disease vectors. Cat fleas (Ctenocephalides felis) are important vectors of two zoonotic bacterial genera listed as priority pathogens by the National Institute of Allergy and Infectious Diseases (NIAID-USA): Bartonella spp. and Rickettsia spp., causative agents of bartonelloses and rickettsioses, respectively.

In this study, we introduce the first microbiome analysis of C. felis samples from California, determining the presence and abundance of relevant pathogenic genera by characterizing the cat flea microbiome through 16S rRNA next-generation sequencing (16S-NGS). Samples from both northern (NoCal) and southern (SoCal) California were assessed to expand current knowledge regarding FBDs in the state. We identified Rickettsia and Bartonella, as well as the endosymbiont Wolbachia, as the most abundant genera, followed by less abundant taxa. In comparison to our previous study screening Californian cat fleas for rickettsiae using PCR/digestion/sequencing of the ompB gene, the 16S-NGS approach applied herein showed a 95% level of agreement in detecting Rickettsia spp. There was no overall difference in microbiome diversity between NoCal and SoCal samples. Bacterial taxa identified by 16S-NGS in this study may help to improve epidemiological investigations, pathogen surveillance efforts, and clinical diagnostics of FBDs in California and elsewhere.

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**Comment**

Bartonella and Rickettsia spp. are also diseases Lyme/MSIDS patients have to contend with.  There is no good, solid research studying the ability of ticks to transmit Bartonella, yet most of us out here in Lyme land have it.  Rickettsia’s out here too in plenty.  I would think this important issue would be dealt with.  Somehow patients are getting these diseases and its either happening by direct transmission or by being activated once they get Lyme and their immune systems become compromised.

Either way, this issue MUST be studied, resolved, and appropriately death with.

Mainstream medicine is completely lost when it comes to tick borne illnesses such as these.  Lyme is finally getting acknowledged due to shear numbers, but don’t kid yourself, thousands upon thousands have Bartonella and Rickettsia as well.  The one drug, one pathogen paradigm needs to be forgotten like a bad dream and researchers and doctors need to become educated on this complex 21st Century plague.

BTW:  Wolbachia is being widely used as a biocontrol.  Here’s why that may not be such a great idea:  https://madisonarealymesupportgroup.com/2017/07/10/wolbachia-the-next-frankenstein/

https://madisonarealymesupportgroup.com/2018/02/12/wolbachia-laced-mosquitoes-being-released-why-lyme-msids-patients-might-be-negatively-affected/

https://madisonarealymesupportgroup.com/2018/05/22/mosquito-spit-alone-may-significantly-alter-your-immune-system-for-days-after-a-bite/

https://madisonarealymesupportgroup.com/2018/05/02/tick-mosquito-and-flea-diseases-more-than-tripled-since-2004/

It is my strong opinion that ALL of these factors are a perfect storm of events causing human suffering and disease.  Researchers need to zoom out and look at the big picture and the interconnection of things or we are doomed.

NY Governor Cuomo Announces Public-Private Research Collaboration to Advance Diagnosis and Treatment of Tick-Borne Diseases

https://www.governor.ny.gov/news/governor-cuomo-announces-new-public-private-research-collaboration-advance-diagnosis-and

For Immediate Release: 6/19/2018

GOVERNOR ANDREW M. CUOMO

Wadsworth Center Laboratory and Regeneron Pharmaceuticals, Inc. Aim to Improve Diagnosis of Lyme Disease and Develop New Treatments

Governor Andrew M. Cuomo today announced a new, groundbreaking public-private research collaboration to advance the diagnosis and treatment of tick-borne diseases. The New York State Department of Health Wadsworth Center Laboratory and Regeneron Pharmaceuticals, Inc. – a leading biotechnology company that invents life-transforming medicines for people with serious diseases, will collaborate to potentially develop improved diagnostics, prophylactics, and therapeutics for the diagnosis and treatment of tick-borne diseases, starting with Lyme disease.

“This public-private collaboration harnesses the expertise of a world-leading biotech company to tackle one of the most pressing public health issues of our time,” Governor Cuomo said. “Together, Regeneron and the Wadsworth Center Laboratory have the potential to advance health research, develop life-saving treatments for Lyme disease, and address major gaps in our knowledge of tick-borne illnesses. New York is proud to help bolster our world-class, life sciences industry while investing in a safer, healthier Empire State for all.”

Tick-borne diseases, particularly Lyme disease, are among the fastest growing infectious diseases in the United States. When diagnosed correctly and treated, most Lyme disease patients recover within two weeks. However, proven diagnostic tests for Lyme disease have been mostly unchanged for the past 40 years and can have limitations when used at certain times during the course of illness, leaving patients and their providers frustrated, which may lead to missed opportunities for treatment.

Regeneron and the Wadsworth Center Laboratory will jointly research how the causative agent of Lyme disease, the bacterium Borrelia burgdorferi, replicates when a human is bitten by a tick carrying the bacterium, and how the host’s immune response is activated. This information will potentially advance the development of improved diagnostics, prophylactics, and new therapeutics. Over the course of five years, Regeneron will invest up to $48 million in this research and the state will reimburse 50 percent of Regeneron’s research costs up to a total reimbursement of $24 million through the New York State Life Sciences Initiative. Additionally, up to $6 million will be provided to Wadsworth Center Laboratory through the Life Sciences Initiative.

The groundbreaking collaboration between Regeneron and the Department of Health’s Wadsworth Center Laboratory builds on Governor Cuomo’s $750 million commitment to support construction of a new worldclass, stateoftheart Wadsworth Center Laboratory public health laboratory in the Capital Region that will promote collaborative public-private research. Redesigned as “A Lab for The 21st century,” Wadsworth will function as a magnet for future private sector investments where employees, visiting researchers, company executives, and academic partners cross paths to accelerate innovation and value creation. As one of the world’s largest public health research laboratories, this modern facility and committed co-investment will serve as a flagship project for the state, signaling a strong and long-term commitment to the Capital Region’s life sciences industry.

The Wadsworth Center Laboratory serves a vital role in the Department of Health’s efforts to protect and promote the health of New York residents. Building on more than a century of excellence as the state’s public health laboratory, the Wadsworth Center Laboratory continues as a premier biomedical institute that merges clinical and environmental testing with fundamental, applied and translational research. Today, laboratory scientists use both classical and contemporary approaches to study environmental and biological questions related to human health and disease, which will support the collaboration with Regeneron.

Regeneron is a science-driven, world-leading biopharmaceutical company headquartered in Tarrytown, New York that discovers, develops and manufactures innovative medicines. Regeneron was established as a biotech start-up in 1988 in New York City, and the following year, under the leadership of then-Governor Mario Cuomo, Empire State Development invested $250,000 to support the company’s growth. Within years, the state realized a 300-percent return on that investment. Regeneron is now the largest biotech company in New York State and one of the largest in the world, with several approved treatments and a robust pipeline of compounds all developed in New York laboratories.

Regeneron is progressing several important potential infectious disease treatments, all of which were built and tested using the company’s proprietary VelociSuite platforms. Regeneron’s Rapid Response capability speeds development of potential treatments by using their VelociGene and VelocImmune technologies to quickly develop fully human antibodies specific to a particular pathogen and create a genetically humanized model to test and validate these antibodies. The company recently delivered its investigational Ebola treatment, REGN-EB3, to the Democratic Republic of the Congo for potential use in the ongoing outbreak.

ESD President, CEO & Commissioner Howard Zemsky said, “Empire State Development is proud to incentivize this innovative partnership between Regeneron and the Wadsworth Center Laboratory that both advances human health and spurs the growth of a world-class life science research cluster in New York.”

Department of Health Commissioner Dr. Howard Zucker said, “The Department’s Wadsworth Center Laboratory is home to some of the nation’s premier research scientists, and by partnering with a first-class organization like Regeneron, we are taking a significant step forward in developing a more accurate and efficient test to diagnose and ultimately treat these devastating diseases. Governor Cuomo understands the important role research plays in improving the health and well-being of New Yorkers.”

“As a proud New York biotech company, we appreciate the continued commitment of Governor Cuomo’s administration to make New York the ideal location to progress innovative life science research,” said Leonard S. Schleifer, M.D., Ph.D., President and Chief Executive Officer of Regeneron. “We are looking forward to expanding the potential impact of our infectious disease program and collaborating with the Wadsworth Center Laboratory on potential solutions for tick-borne diseases, which are increasing in incidence and can be extremely difficult to diagnose and treat.”

Senator Sue Serino, Chair of the Task Force on Lyme and Tick-Borne Diseases said, “Since taking office, I have heard from countless New Yorkers who have suffered gravely as a result of an inaccurate Lyme Disease diagnosis and lack of advancement in this field. Last year, Senator Kemp Hannon and I held a joint hearing to help the state improve its response to the Lyme and tick-borne disease epidemic. At that time, we urged the state to lead the way and make a significant investment in this critical area. As Chair of the Senate’s Task Force on Lyme and Tick-Borne Diseases, I am proud that the voices of so many who have been suffering in silence for far too long are finally being heard. I thank the Governor for giving this issue the attention it deserves and I look forward to the day when false negatives and inaccurate results are a thing of the past and patients in New York can receive the effective, quality care they deserve.”

Senator Neil D. Breslin said, “The growth of health care treatments and services have become key economic drivers for New York’s economy. The Governor’s focus on expanding these industries provides a major boost to the Capital Region by supporting our academic institutions, attracting top scientists, and advancing treatments for diseases like Lyme that impact so many of our residents. I look forward to the continued development of treatments through this new collaboration, and thank Regeneron for working with the state of New York to provide stronger communities for the next generation.”

Assembly Member Patricia A. Fahy said, “The Governor’s comprehensive Life Sciences initiative is drawing world-class researchers Upstate to be part of the transformative health advances that are being discovered right here in the Capital Region. I am proud of the life-changing R&D that Wadsworth and Regeneron have already accomplished, and by partnering on this latest endeavor, New Yorkers across the state will reap the benefits of newly developed diagnoses and treatments.”

Assembly Member John T. McDonald III said, “Lyme Disease and tick-borne diseases are ongoing healthcare concerns especially in New York State. I applaud this public-private partnership that advances the research surrounding these diseases and will hopefully provide innovative solutions to this issue. The Governor’s new investment to support the partnership between Regeneron and Wadsworth Center Laboratory will take these efforts even further by leveraging the assets found in the Capital Region to develop new, potentially life-saving treatments for tick-borne illnesses. I proudly support projects that aim to keep the health of all New Yorkers a top priority.”

Albany County Executive Daniel P. McCoy said, “I commend Governor Cuomo for investing in the development of new treatments for Lyme disease here in the Capital Region at the Wadsworth Center. By supporting New York State’s growing life science research cluster, this partnership will help create jobs, develop new life-saving health services and support an improved quality of life for our residents.”

Albany Mayor Kathy Sheehan said, “As summer approaches, New Yorkers are reminded of the dangers of tick-borne illnesses. This collaborative public-private partnership will bring together world-class scientists and health researchers to uncover new treatments and preventative measures at the Capital Region’s premiere public health laboratory. Thank you to Governor Cuomo for supporting this critical public health project and investing in Albany’s Wadsworth Center Laboratory.”

New York State’s $620 Million Life Science Initiative

In the FY 2018 state budget includes a $620 million initiative to spur the growth of a world-class life science research cluster in New York, as well as expand the state’s ability to commercialize this research and grow the economy. The Governor’s multi-faceted initiative includes, $100 million to expand the Excelsior Jobs Program Tax Credit to the life sciences industry, $100 million for a life sciences research and development refundable tax credit program, and $320 million in other forms of investment.

To support the development of wet-lab and innovation space, the initiative includes state capital grants for operating support and investment capital for early stage life science companies that leverage an additional match of at least $100 million from the private sector.

The Life Science sector encompasses the fields of biotechnology, pharmaceuticals, biomedical technologies, life systems technologies, and includes organizations and institutions that devote the majority of their efforts to the various stages of research, development, technology transfer and commercialization. Every day, firms in this sector are developing new medical and pharmaceutical breakthroughs that have the potential to save lives, whether through new therapies or the early detection of diseases like autism and cancer. These firms are also making significant advancements in the realms of agriculture and environmental biotechnologies, helping create a cleaner and more sustainable future.

By strengthening incentives, investing in the facilities, and improving access to talent and expertise, New York will significantly increase its share of industry-funded research and development, support the commercialization of existing academic research, and usher in the next generation of advanced technologies. Beyond the advancements in science, this initiative will position New York as a magnet for emerging manufacturing- based enterprises to bolster regional economies and create thousands of jobs.

 

Counterpoint: We Don’t Take Lyme Seriously Enough

http://thechronicleherald.ca/opinion/1577953-counterpoint-we-don’t-take-lyme-seriously-enough#.WybeW46-8U4.linkedin

COUNTERPOINT: We don’t take Lyme seriously enough

by JIM WILSON

Published June 16, 2018

Diagnosis, treatment is still lacking in Nova Scotia
B97808243Z.120180615163154000GK8L2CS6.11The bullseye rash, like the one pictured on a woman’s arm above, is often associated with the early stages of Lyme disease. (JAMES GATHANY)

Re: your June 9 Letter of the Week: “Stop pushing the Lyme disease panic button.” I think it is time for a different take than what’s offered in this letter and the June 3 news article it stemmed from, “Public health failing to address Lyme disease crisis, says author.”

Born in Nova Scotia, I contracted Lyme disease in Dartmouth in 1991.

Little has improved since then, except for awareness.

Diagnosis and treatment are still very poor. Testing for Lyme disease is not even recommended until at least two to three weeks after infection because the current testing protocols used Canada-wide are indirect tests — checking to see if the patient has developed detectable levels of antibodies to the bacterium that causes Lyme disease (borreliosis), and it takes that long for us to develop the antibodies. By then, the disease has moved into deep tissue.

Lyme disease is not easily preventable; it requires daily due diligence and even then you can still become infected.

It may require landscaping redesign of your property, separating tick habitat from your living space.

Ticks, especially those that transmit Lyme disease, are tiny and not easily seen. Frequently, if you see one tick on you, you may miss other ticks that are in areas of the body not easily observed, including under the hair and in private parts.

Also, Canada says it is keen on prevention. Yet a majority of countries have approved products for sale designed to prevent ticks from attaching, such as permethrin-soaked clothing and eucalyptus oil with icaridin. Only after years of asking, Health Canada finally approved permethrin-soaked clothing to be sold here, but strangely only to prevent insect bites, not tick attachments (unlike 45 other countries).

Also, the eucalyptus-oil-based products containing icaridin (also called picaridin) that have been shown to be very effective have not been approved for sale in Canada either. So is Canada truly concerned about prevention? It appears not.

Rhode Island, a tiny U.S. state, has 9,000-plus cases per year, using the United States Center for Disease Control model of 10 times the confirmed cases (due in large part to poor tests, poor medical education and other reasons).

It is illogical to blame the individual for not taking precautions, which is the implication in the article and in this letter.

The fact is, even with the best of precautions and awareness, people are still becoming infected in record numbers, as there is a large amount of under-reporting.

The article and the letter also fail to point out that ticks do not only transmit Lyme disease.

Our motto at the Canadian Lyme Disease Foundation (CanLyme.org) is No Tick Is A Good Tick.

That’s because we must be concerned about all species of ticks that will attach to humans. They are all capable of transmitting various diseases (ehrlichiosis, babesiosis, rocky mountain spotted fever, etc.) — some requiring only a short period of attachment — and they can deliver serious neurotoxins such as tick paralysis (from the Dermacentor ticks commonly known in the west as the wood tick and in eastern and central Canada, the dog tick).

According to the original article, “Heather Fairbairn, a spokeswoman with the province’s public health department, states Lyme disease is easily curable both in the early and later states of the disease.”

That is simply an irresponsible statement that flies in the face of all credible evidence-based, grade-level science.

If caught very early, it can usually be cured with antibiotics. Sadly though, most cases are not diagnosed early — and typically it is only those who present with a nicely defined bull’s-eye rash who are.

But most people do not get that rash.

You can easily apply the “10 times of reported confirmed cases” estimate to Nova Scotia as well, putting the likely number of cases at around 4,000 per year — not around 400 — showing clearly that it is not easily prevented.

Later-stage Lyme disease is very difficult to treat in many cases — again a well-known fact supported by all studies done on animals and thousands of individuals’ testimony (similar to the 100 people who testified on camera at the 2016 Lyme disease conference sponsored by the Public Health Agency of Canada as required by federal legislation enacted with all-party, unanimous support).

The legislation came about due to misinformation by government and medical authorities over decades.

Physicians are improperly educated and not given the true picture of Lyme borreliosis and other tick-borne diseases. People do not have access to adequate diagnosis and treatment.

Jim Wilson is president of the Canadian Lyme Disease Foundation.

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**Comment**

Bravo, Jim.  You are spot on.

7 Signs and Symptoms of LD That Are Way Too Easy to Ignore

https://www.prevention.com/health/health-conditions/a21097669/lyme-disease-symptoms/

7 Lyme Disease Symptoms That Are Way Too Easy to Ignore

Lyme disease can do more than cause a rash—and if you don’t notice the symptoms right away, you’re at risk for major complications.

By Marygrace Taylor
Jun 7, 2018

lyme-disease-symptoms-1528314206LYME DISEASE SYMPTOMSGETTY IMAGES

Lyme disease is the most commonly reported insect-transmitted disease in the United States, affecting an estimated 300,000 people a year, according to the Centers For Disease Control and Prevention (CDC). In certain parts of the country (like the northeast or upper Midwest), checking for ticks is practically a summertime rite of passage.

Experts know that Lyme disease is caused by the bacteria Borrelia burgdorferi, which is transmitted from the bite of an infected tick. But diagnosing the condition isn’t always so straightforward. Once inside your body, the bacteria can wreak havoc in a number of ways. Yes, that can include the classic bullseye-shaped rash. But many of the other symptoms of Lyme disease aren’t as well known, and they can be frustratingly vague.

That’s why it’s important to familiarize yourself with the signs and seek medical assistance if you think you or a loved one may have Lyme. The disease is easy to treat as long as you know what to look for.

Early symptoms of Lyme disease

The first signs of Lyme can strike anywhere from 3 to 30 days after getting bitten by an infected tick. They can include:

A red rash

lyme-disease-bulls-eye-1524676364

lyme disease rash – GETTY IMAGES

Up to 80 percent of people will develop a red rash in the days or weeks after contracting Lyme disease. It usually forms at the site of the tick bite, and the redness is basically an allergic reaction to the tick’s saliva, says Nikhil Bhayani, MD, an infectious disease specialist at Texas Health Hurst-Euless-Bedford.

Lyme disease rashes will often be bullseye-shaped, but they can also just be a red blotch. The rash will usually expand with time and can get as big as 12 inches. It might feel warm to the touch or look a little crusty in the center where you were bitten, but it won’t be itchy or uncomfortable.

Flu-like symptoms

Not everyone experiences a full laundry list of flu-like symptoms. But there’s a good chance you’ll notice at least a few, Dr. Bhayani says. Here’s how commonly specific symptoms affect Lyme patients:

Fatigue: 54 percent
Fever: 16 percent
Muscle pain: 44 percent
Headache: 42 percent
Neck stiffness: 35 percent
Swollen lymph nodes: 23 percent

The flu-like symptoms are a result of your immune system’s attempt to fight off the bacterial infection and help you get better, says Kalpana D. Shere-Wolfe, MD, an infectious disease specialist the University of Maryland Medical Center Midtown Campus.

Of course, these kinds of symptoms could indicate many different illnesses. One clue that a tick bite caused them? With Lyme disease, you won’t experience the coughing or congestion that often comes with the actual flu, Dr. Shere-Wolfe says.

neck-stiffness-1528384202

Later Lyme disease symptoms

After a month or so, people infected with Lyme disease may start showing additional symptoms. These can include:

Larger or additional rashes

As the Lyme disease infection spreads throughout the body, your rash might start to expand even more. You might also develop new, smaller rashes nearby. Like the early rash, these might be bullseye-shaped. But they can also just look splotchy or blob-like, according to the CDC. They might even take on a slightly bluish tint in the middle.

Exhaustion, fuzzy thinking, and other neurocognitive problems

Borrelia burgdorferi is one of the few bacteria that can cross the blood-brain barrier and infect the central nervous system, explains Timothy J. Sellati, PhD, Chief Scientific Officer for the Global Lyme Alliance. That can lead to inflammation of the brain, which can affect your central nervous system function in a few different ways.

One of those is extreme fatigue, which affects as many as 76 percent of people with advanced Lyme disease, according to research. Trouble concentrating, loss of coordination, and short-term memory loss are other possible problems, occurring in up to 24 percent of people. In extreme cases where the disease is left untreated for extended periods, you might even develop facial weakness and behavioral changes, Sellati says.

Intense headaches

The same inflammation that causes fatigue and fuzzy thinking can also lead to headaches, which findings suggest could strike in up to 70 percent of people with Lyme disease.

Usually, these feel intense and more similar to a migraine than your run of the mill tension headache, Dr. Bhayani says. In addition to throbbing pain, you might also experience hypersensitivity to noise or light.

Severe pain, numbness, or tingling in your joints and muscles

Around 60 percent of patients will develop joint pain or even arthritis as their Lyme disease progresses, according to a Johns Hopkins University School of Medicine study. Usually, it starts in the joints closest to where you were bitten and can spread from there, especially to areas like the knees. The pain isn’t usually constant, though. Experts don’t fully understand why, but “the symptoms can wax and wane over a period of weeks or months,” Sellati says.

Over time, the disease can attack the cartilage in the joints and lead to tissue damage, says Linda Yancey, MD, an infectious disease specialist with Memorial Hermann Katy Hospital in Katy, TX.

Like many of the other problems caused by Lyme disease, this one is also triggered by inflammation. “The damage to tissues, bone, and cartilage is caused by the production of pro-inflammatory proteins, the same protein responsible for damage caused by rheumatoid arthritis,” Sellati says.

joint-pain-1528383554

GETTY/DANA LEIGH SMITH

Heart palpitations, dizziness or shortness of breath

In addition to invading the central nervous system, Borrelia burgdorferi can make its way into heart tissue. That can cause the tissue to become inflamed, leading to heart palpitations, Sellati explains. It might feel like your heart is pounding, fluttering, or beating faster than usual. Usually, it becomes more noticeable with vigorous exercise or stress. The problem isn’t all that common, affecting only around 11 percent of patients. Still, it can be serious. “If [palpitations] occur frequently, seem to get worse, or are accompanied by chest pain, fainting, severe shortness of breath, or dizziness, you should seek immediate medical attention,” Sellati says.

One thing to note: Generally, shortness of breath is most likely to strike when you’re exerting yourself, but with Lyme that isn’t always the case. “A Lyme disease patient can experience shortness of breath during normal activity that in the past might not have resulted in this response,” Sellati explains.

⚠️ If you notice symptoms of Lyme disease, call your doctor right away

It’s best to seek medical attention sooner rather than later. The longer Lyme disease goes untreated, the more likely you are to develop severe complications like intense joint pain, heart problems, or cognitive issues.

Lyme disease treatment: Your doctor should refer you to an infectious disease specialist, who can evaluate your symptoms and decide whether you need testing, Dr. Yancey says. If you test positive, you’ll be given antibiotics to fight the infection.

False-negatives: If your test comes back clean, but you’re convinced that Lyme disease is the culprit, ask to be retested. False negatives are common early on since it takes a few weeks for your immune system to build up antibodies to the bacteria.

________________

**Comment**

This article has some good information mixed in with some very bad information.  The article states as up to 80% have the “classic” bullseye rash.  Hogwash.  ILADS states fewer than 50% see a tick bite or a rash:  http://www.ilads.org/lyme/about-lyme.php  Hardly anyone I work with has seen either.

As to the appearance of any rash that might occur:  “This emphasis on target-like lesions may have inadvertently contributed to an underappreciation for atypical skin lesions caused by Lyme disease.” — Some Visible Signs of Lyme Disease Are Easily Missed or Mistaken, Science Daily, Apr 22, 2013 https://www.sciencedaily.com/releases/2013/04/130422132507.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Flyme_disease+%28ScienceDaily%3A+Health+%26+Medicine+News+–+Lyme+Disease%29

As to flu-like symptoms, a case of a little girl outside playing got bit by a tick and within about 6 hours couldn’t walk or talk.  She never got flu-like symptoms but quickly advanced to late stage symptoms WITHIN HOURS:  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/  All my initial symptoms were gynecological:  https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/

Again, as to “Later Lyme Disease Symptoms,” people can jump from one stage to another quickly – within hours and seemingly bypass certain stages.  This is an important detail that if practitioners aren’t aware of, will dismiss patients entirely if they don’t present initially with a bullseye rash and flu-like symptoms.  The little girl’s case I mention is a prime example.  Regular doctors dismissed her entirely.  They rushed her to Dr. Jones, a well-known, respected, and experienced doctor with tick borne illness.  After the treatment he gave, the girl was right as rain.  I cringe when I consider the alternative.  She would join the increasing ranks of “Chronically infected” patients.

The article again, states “larger or additional rashes,” in this category but many fail to have any, ever.  

I am thankful the article mentions heart issues, pain, numbness, tingling, dizziness, shortness of breath, and headaches as these are symptoms many experience.  What they fail to mention is the involvement of other pathogens that could cause these very same symptoms and require different medications.

I’m also thankful they state to call your doctor right away.  Here’s the problem.  Most doctors don’t know what they hell they are doing and infectious disease “specialists” are often the worst offenders!  They are believing, regurgitating, and following the same ancient mythical advice that’s been going around like a bad case of the flu for over 40 years!  Don’t waste your time and money on these folks.  Contact your local lyme support group for Lyme literate physicians trained by ILADS.  Please point regular practitioners to this:  https://madisonarealymesupportgroup.com/2018/06/06/lyme-education-for-healthcare-professionals/ and https://madisonarealymesupportgroup.com/2018/02/19/calling-all-doctors-please-become-educated-regarding-tick-borne-illness-heres-how/

Case in point:  They state that those who get treated promptly fare much better, yet the video within the article (go to link) states to take a “wait and see” approach.  In other words, you get bit, and then you just wait around on pins and needles to SEE if you experience symptoms.  Anyone else out there see the Russian Roulette approach here?  It’s a damned if you do, damned if you don’t scenario, with you losing in the end.

Each and every tick bite needs to be taken as seriously as a heart attack and treated, in my opinion.  Why risk it?  As a patient and advocate who’s infected as well as her husband, and has spent over $120K out of pocket for over 4.5 years of treatment and needing to regularly maintain this health, I can attest to how this illness(es) can take everything you own and have.  It will rock your world like nothing else. The official ILADS word on this is that there IS NO black and white answer as to treating a tick bite prophylactically but if you live in an endemic area (as I do) you should definitely consider it because a high percentage of ticks are infected.  They also state IF you decide to be treated, it should be for NO LESS than 3 weeks.  This treatment will prevent the body from mounting an antibody response, which means subsequent testing for Lyme WILL BE NEGATIVE.  To which I say, what does that matter if you become sicker than a dog?  TREAT THIS SUCKER AND TREAT IT NOW!  http://www.ilads.org/lyme/what-to-do-if-bit-by-tick.php

If you are unfamiliar with what appropriate Lyme treatment looks like:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

You can type the other pathogens into the search bar for their treatments.  (i.e. Babesia, Bartonella, Mycoplasma, Viruses, etc)

 

 

 

 

Tick-Borne Disease Working Group Subcommittee Reports – Comments due by June 18

https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/index.html

Reports

The Tick-Borne Disease Working Group (Working Group) is required to submit a report on its activities and any recommendations to the HHS Secretary and Congress every two years. The first report is due December 2018.

The six subcommittees of the Working Group prepared reports to inform the Working Group and its 14 voting members. These reports offer insights into gaps, opportunities and potentials actions to be considered by the Working Group for the report to Congress and HHS Secretary. 

Report of the Access to Care Services and Support to Patients Subcommittee

Report of the Disease Vectors, Surveillance, and Prevention Subcommittee

Report of the Other Tick-Borne Diseases and Co-Infections Subcommittee

Report of the Pathogenesis, Transmission and Treatment Subcommittee

Report of the Testing and Diagnostics Subcommittee

Report of the Vaccine and Therapeutics Subcommittee

 

You may make comment either by writing or verbally by June 18th, for the next meeting on June 21st.

Go here for the June 21st meeting.
https://www.hhs.gov/ash/advisorycommittees/tickbornedisease/meetings/index.html

 

 

 

 

In the Battle Against Lyme Disease, the Ticks Are Winning

https://www.lymedisease.org/ticks-winning-lyme-sci-am-pfeiffer/

Scientific American, June 11, 2018:

by Mary Beth Pfeiffer

In the space of two generations, the natural landscape in many American states has been slowly transformed from a place of refuge and peace to one of peril and menace.

Blacklegged ticks that transmit Lyme disease and other illnesses inhabit half of US counties, where they infect some 300,000 people yearly in grassy meadows, urban parks, backyards and many other places.

Although children are the most frequently diagnosed group and thousands of infected patients develop long-term infirmity every year, little has been done to curb the spread of ticks or to control the harm inflicted by the Lyme bacterium. Instead, the list of new and threatening tick species and illnesses grows. READ MORE:  https://blogs.scientificamerican.com/observations/in-the-battle-against-lyme-disease-the-ticks-are-winning/

 

The Global Search for Education: Tackling the Ticks with Tech

http://www.cmrubinworld.com/the-global-search-for-education-tackling-the-ticks-with-tech/

The Global Search for Education: Tackling the Ticks with Tech

Posted By C. M. Rubin on Jun 11, 2018

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“Through rapid genetic sequencing, scientists can identify many different strains of Borrelia burgdorferi as well as new tick-borne microbial infections, such as Borrelia miyamotoi, Borrelia mayonii, and the Heartland virus.” — Brian Fallon

Most likely, you or someone you know has been affected by Lyme disease, the most common tick-borne illness in the US with more than 300,000 cases diagnosed each year. In a timely new book, Conquering Lyme Disease (Columbia University Press), Columbia University Medical Center physicians Brian A. Fallon and Jennifer Sotsky reveal that despite the challenges to find a cure for this complex, debilitating disease, precision medicine and biotechnology are accelerating the discovery of new tools with which doctors will be able to diagnose it and treat patients.

Could groundbreaking technologies that rapidly increase our understanding and open up new pathways mean a cure for Lyme disease one day soon? The Global Search for Education is pleased to welcome Dr. Brian Fallon to find out how tech is tackling the ticks.

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“Modern technology using Next-Generation Sequencing (NGS) allows one to discover with great rapidity all microbes that may be present within a sample of fluid.” — Brian Fallon

Brian, how has technology improved the research process for tick borne diseases?

Consider the difference in price of genome sequencing between 20 years ago and today. In 2003, it had taken the Human Genome Project about 4 years and costs estimated between $500 million to 1 billion…by 2006 the cost for sequencing a single human genome had dropped to 14 million……today a whole human genome can be sequenced within days for less than $1,000. This is a tremendous advance.

Why is genome sequencing so important? Let’s look at human tick-borne diseases. When two different people are infected with Borrelia burgdorferi (the microbe that causes Lyme disease), one will resolve the disease quickly after a course of antibiotics while the other may develop a chronic relapsing remitting illness. Why? Because one person might have gotten a more persistent strain, while the other received a less invasive strain that stays localized to the skin. Additionally, the genetic differences in the human determines how the immune system responds to the invading microbe. Understanding the genetics of the infection and of the human host allows scientists to unravel the mysteries of tick-borne illnesses.

Through rapid genetic sequencing, scientists can identify many different strains of Borrelia burgdorferi as well as new tick-borne microbial infections, such as Borrelia miyamotoi, Borrelia mayonii, and the Heartland virus. When the genome of a microbe is sequenced, it provides a starting point for the study of pathogenesis, vaccine development, and treatment. Discovery of these new microbes inside ticks has been enormously helpful. A patient who has had typical symptoms of Lyme disease after a tick bite but has tested negative on the blood tests for Lyme disease might puzzle clinicians. They may criticize the insensitivity of the Lyme disease tests. However, when this same patient is tested for the newly discovered tick-borne infection, Borrelia miyamotoi, the diagnosis is then clear. Yes, the patient had a Lyme-like illness, but it wasn’t Lyme disease: it was Borrelia MIyamotoi disease.

Modern technology using Next-Generation Sequencing (NGS) allows one to discover with great rapidity all microbes that may be present within a sample of fluid. This “discovery based” approach using “unbiased next generation sequencing” enabled a 14 year old boy to be rescued from a fatal infection within 48 hours (Wilson et al, NEJM, 2014). This boy had endured 3 hospitalizations over 4 months, had over 100 diagnostic tests, spent 44 days in an ICU for encephalitis of unknown etiology, had a brain biopsy, and had to be put into a medically induced coma to prevent damage from his ongoing seizures. Eventually Dr. Charles Chiu at U.C.S.F. employed NGS analysis of more than 8 million sequences with a bioinformatics pipeline (SURPI) for the detection of all known pathogens. The cause of the boy’s meningoencephalitis was revealed as Leptospira santarosai. He had likely acquired it in Puerto Rico, as it is not present in the continental United States. He received the appropriate antibiotics and was discharged 2 weeks later to rehab. This same approach is especially useful for uncommon infections as they might not be suspected; for example, rare tick-borne viruses such as Powassan Virus or Heartland Virus can be rapidly detected using this discovery approach.

How has big data impacted the way advocacy groups support research?

A patient-generated source of Big Data is LymeDisease.org. This California based organization developed a survey called “My Lyme Data” that patients could fill out on the web about their clinical history and lab tests and treatments. In a short period of time, they had data on 10,000 patients whom they track over time. With this information, they provide a more comprehensive clinical view of the bulk of patients who are diagnosed with persistent symptoms despite treatment for Lyme Disease (aka Chronic Lyme Disease).

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“In geographic areas where medical professionals are scarce, AI technologies will play an increasing role in improving patient care by allowing differential diagnoses to be generated and treatment options suggested through AI-based systems accessed through the internet.” — Brian Fallon

Jobs in all professions are being automated. Do you believe AI technologies will only assist doctors or will they replace physicians in some tasks? What does this mean for doctors, nurses, and the future of medicine?

While AI technologies will go a long way to assist health care providers to provide better care, its application to medical care is still just beginning. One can anticipate, however, that in geographic areas where medical professionals are scarce, AI technologies will play an increasing role in improving patient care by allowing differential diagnoses to be generated and treatment options suggested through AI-based systems accessed through the internet.

The general public has more access to information than ever before about Lyme disease from websites, medical organizations, articles and social media. Everyone can be their own “expert” or even their own “doctor.” Can you speak about the pros and cons of online health data in the era of fake news?

This obviously is a huge area of concern. Individuals used to turn to their physician or to the medical information books, such as the Merck Manual. Now, they turn to the web. In a recent survey of patients who used the web to obtain health information (Doherty-Torstrick 2016), we learned that more than half of the 730 patients reported they experienced increased distress as a result of checking the web. We also learned from this survey that individuals who did not have a health education were more likely to spend more time on the web and were thus prone to develop more anxiety than those who were better educated from a health perspective. While some of the information they find may be accurate, other information may be well-intentioned but ill-informed, misleading, and even harmful.

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“Researchers can rapidly screen thousands of drugs to determine which agents have the strongest ability to kill Borrelia spirochetes. This is possible because of the development of high throughput assays, which have proven more effective than the standard agents in eradicating both the stationary phase Borrelia and its more drug-tolerant persister-forms.” — Brian Fallon

Look into the future. What are the technologies you are most excited about in terms of helping to find cures for Lyme disease and improve patients quality of life?

Researchers can rapidly screen thousands of drugs to determine which agents have the strongest ability to kill Borrelia spirochetes (Feng 2014). This is possible because of the development of high throughput assays, which have identified new antibiotics that have proven more effective than the standard agents (doxycycline, amoxicillin) in eradicating both the stationary phase Borrelia and its more drug-tolerant persister-forms. While it cannot be assumed that what is true in the lab setting will translate to efficacy in humans, biotechnology advances have enabled the identification of new therapeutic agents, offering much hope for a wider array of treatment options for patients in the future.

Another major advance is “big data” conducted by biomedical information engineers trained in biostatistics and computer science. Internet search engine queries are being monitored to predict outbreaks of infectious disease. Unanticipated side effects of drugs and their interactions can be detected through analyzing millions of digital medical records from patients who have taken a particular drug. One can examine whether patients given an antibiotic did better when treated for longer or shorter periods, or whether patients with a pre-existing autoimmune disease are more likely to develop complications from a new onset Tick-borne infection than those without a history of autoimmune problems.

Our Lyme and Tick-borne Diseases Research Center, located at the Columbia University Irving Medical Center (CUIMC) in New York City, is right next door to an international data resource. CUIMC is the coordinating center of a public health information initiative which includes medical records from approximately 400 million people drawn from eighty health-care organizations from around the world. This represents a unique opportunity to ask questions, generate hypotheses and get answers about Tick-borne diseases. When discovery is optimized, medical care is enhanced.

Brian Fallon, MD, MPH is the Director of the Lyme and Tick-Borne Diseases Research Center at the Columbia University Irving Medical Center and the author with Jennifer Sotsky of Conquering Lyme Disease: Science Bridges the Great Divide, published in 2018 by Columbia University Press.

For more information.

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C. M. Rubin and Brian Fallon

Join me and globally renowned thought leaders including Sir Michael Barber (UK), Dr. Michael Block (U.S.), Dr. Leon Botstein (U.S.), Professor Clay Christensen (U.S.), Dr. Linda Darling-Hammond (U.S.), Dr. MadhavChavan (India), Charles Fadel (U.S.), Professor Michael Fullan (Canada), Professor Howard Gardner (U.S.), Professor Andy Hargreaves (U.S.), Professor Yvonne Hellman (The Netherlands), Professor Kristin Helstad (Norway), Jean Hendrickson (U.S.), Professor Rose Hipkins (New Zealand), Professor Cornelia Hoogland (Canada), Honourable Jeff Johnson (Canada), Mme. Chantal Kaufmann (Belgium), Dr. EijaKauppinen (Finland), State Secretary TapioKosunen (Finland), Professor Dominique Lafontaine (Belgium), Professor Hugh Lauder (UK), Lord Ken Macdonald (UK), Professor Geoff Masters (Australia), Professor Barry McGaw (Australia), Shiv Nadar (India), Professor R. Natarajan (India), Dr. Pak Tee Ng (Singapore), Dr. Denise Pope (US), Sridhar Rajagopalan (India), Dr. Diane Ravitch (U.S.), Richard Wilson Riley (U.S.), Sir Ken Robinson (UK), Professor Pasi Sahlberg (Finland), Professor Manabu Sato (Japan), Andreas Schleicher (PISA, OECD), Dr. Anthony Seldon (UK), Dr. David Shaffer (U.S.), Dr. Kirsten Sivesind (Norway), Chancellor Stephen Spahn (U.S.), Yves Theze (LyceeFrancais U.S.), Professor Charles Ungerleider (Canada), Professor Tony Wagner (U.S.), Sir David Watson (UK), Professor Dylan Wiliam (UK), Dr. Mark Wormald (UK), Professor Theo Wubbels (The Netherlands), Professor Michael Young (UK), and Professor Minxuan Zhang (China) as they explore the big picture education questions that all nations face today.

The Global Search for Education Community Page:  https://www.facebook.com/The-Global-Search-for-Education-209344512420574/

C. M. Rubin is the author of two widely read online series for which she received a 2011 Upton Sinclair award, “The Global Search for Education” and “How Will We Read?” She is also the author of three bestselling books, includingThe Real Alice in Wonderland, is the publisher of CMRubinWorld and is a Disruptor Foundation Fellow.