Reminder: Lyme Awareness Event in Madison, Wisconsin

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Mark Jason Lim

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on May 3, 2019

When Lyme Disease Doesn’t Go Away

May 3, 2019

https://news.columbia.edu/news/when-lyme-disease-doesnt-go-away

When Lyme Disease Doesn’t Go Away

It’s tick season. Here’s what Brian Fallon, the director of Columbia’s Lyme & Tick-borne Diseases Research Center, has to say about combating chronic Lyme disease.
By

Carla Cantor
April 29, 2019
Brian Fallon

Brian A. Fallon, (VP&S ’85, MPH ’85) spent his early career working with patients whose medical symptoms were a mystery. The Columbia University Irving Medical Center psychiatrist became one of the foremost researchers of hypochondria and somatic disorders, or psychological illness that manifests as physical symptoms.

He might have stayed with that specialty had he not begun in the early 1990s to see a surge in referrals of patients with chronic, unexplained symptoms who had all been healthy—until they got Lyme disease. These patients suffered from chronic pain, fatigue and cognitive problems that had a debilitating effect on their lives. They all had been treated with antibiotics with partial response but then relapsed.

Since such persistent infection was considered impossible, they were told they were hypochondriacs.

“At the time, the medical community was saying that initial antibiotic therapy led to a cure,” Fallon said. “I found this hard to believe given the suffering among these patients. We needed to look further.”

Since 2007 Fallon has headed Columbia’s Lyme & Tick-borne Diseases Research Center, a joint effort by the Global Lyme Alliance, the Lyme Disease Association and the Columbia University Medical Center Board of Trustees. It is the first such academic research center in the country, and its mission is to tackle the core clinical questions of the disease and identify better diagnostics, biomarkers and treatments.

Fallon discusses why this is a pivotal time in the world of Lyme disease.

Book cover of Conquering Lyme Disease

Q. Lyme disease was first reported in the United States in 1977 in the town of Old Lyme, Connecticut.  How far have we come?

A. We still have many unanswered questions, but there has been tremendous progress. We now know the cause of the disease, a bacterium called Borrelia burgdorferi, and its multi-system manifestations. We know many of the biologic tricks the organism uses to evade the human immune response and we know its genetic makeup, as it has been fully sequenced. We know that while most Borrelia are easily eradicated with a standard course of antibiotics, some persist despite treatment. We briefly had a vaccine on the market, which is no longer available, but a new vaccine is now in clinical trials. Despite advances in some areas, there remain serious problems, most prominently that the epidemic of Lyme disease continues to expand both geographically and in the number of new cases—an estimated 400,000 in the United States each year.

Q. What are the symptoms of chronic Lyme disease and how is it diagnosed? What percentage of Lyme sufferers go on to have chronic problems?

A. Most patients do well if the infection is recognized and treated early. In about 10 to 20 percent of cases, patients develop a more severe disease whose symptoms can include debilitating pain, fatigue, headaches, mental fog causing difficulty with memory or finding words, irritability and  sleep disorders. Unfortunately, because our blood tests are antibody-based and can remain positive for years even when infection is no longer present, it is hard to determine whether a patient’s recurrent symptoms are due to persistent infection, a new infection or a post-infectious disorder.

Q. Why does post-treatment Lyme disease affect some people and not others?

A. This is an important question for which we have only preliminary answers. Infection by a more invasive strain of the Borrelia microbe, rather than one that only causes skin manifestations, increases the risk of more severe disease. Certain genetic markers increase the risk of chronic Lyme arthritis. Patients with a history of multiple physical illnesses and other life stressors may have less resilience to infection. And because the tick may transmit other microbes, some patients may have two or more infections.

Q. What are the current treatments for persistent Lyme disease?

A. There are multiple approaches to the treatment of lingering symptoms, but there haven’t been any new, large clinical trials in the U.S. on chronic Lyme-related symptoms in over 10 years. Studies in Europe of early Lyme disease indicate that some of these patients improve without further treatment over the course of one year after initial antibiotic therapy. Patients with chronic symptoms need a personalized approach based on the cause of their symptoms.

Q. Is there hope of finding a cure?

A. Absolutely. With precision medicine approaches, biomarkers are now emerging that appear able to predict who might respond to standard antibiotic therapy and those who might not. This provides an opening for testing new treatment approaches for the latter group, leading to improved long-term outcome.

Dr. Fallon is co-author of Conquering Lyme Disease: Science Bridges the Great Dividewith Dr. Jennifer Sotksy ( VP&S’16,) a fourth-year psychiatry resident at Columbia University Irving Medical Center. (Columbia University Press, 2017 hardcover,  2019 paperback)

For media inquiries or more information, contact Carla Cantor at 212-854-5276 or carla.cantor@columbia.edu.

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**Comment**

  • Again, the erroneous percentages of 10-20% of patients going on to develop persistent symptoms is inaccurate.  There’s a whole lot more of us out here in Lyme-land than that.  Please read:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  In a nutshell, microbiologist Holly Ahern points out that the 10-20% the CDC calls PTLDS only includes those patients diagnosed and treated early.  It does not and should not include a large subset of patients (30-40%) diagnosed and treated late.  When you add the two groups together, you get 60% of patients going on to struggle with persisting symptoms.  This is an important detail as it shows the vast numbers struggling as well as the need for high priority research studying this issue.  

 

  • He discusses strains of borrelia.  I learned something the other day – that borrelia (Lyme) is unique in that bacteria are typically only allowed 1 species name, but due to honoring Willy Burgdorfer, all borrelia are “Lyme.” This little fly in the ointment is a huge reason many are not getting diagnosed.  Current 2-tiered testing only tests for 1 strain. I was told by a researcher to think of the Borrelia burgdorferi sensu lato complex as an umbrella, and the 23 genospecies are dangling from it (soon to be 24, BTW!) This may be why Southerners struggle with getting a diagnosis. STARI may be one of these borrelia that doesn’t fit into the box researchers have created for this night-mare.

 

 

  • He also found IV’s give much higher blood levels of drugs than orals, and that the following variables necessitated IV treatment:
    1. Spinal tap shows high inflammation (high protein)
    2. High Sed rate and synovitis (inflammation of synovial membrane)
    3. People sick for more than 1 year
    4. Age over 60
    5. Acute carditis
    6. Immune deficiency
    7. Those who used immunosuppressants
    8. Failed oral treatment

 

  • If you study this for 1 second you begin to appreciate the complexity of treating this which mainstream doctors still haven’t even accepted.

 

  • The fact that there haven’t been any new, large clinical trials in the U.S. on chronic Lyme-related symptoms in over 10 years is unacceptable when you consider that this is two times more prevalent than breast cancer.  HELLO?  Where’s the green ribbons and huge institutions raising funds for Lyme research?  Oh, yeah, I remember, our researchers are using their own microscopes in their basements!  https://lymelifescapeswithcaroline.com/2014/03/25/dr-alan-b-macdonald/  MacDonald is shown in the documentary, “Under Our Skin.”  

 

  • BTW: when MacDonald presented his culture findings (direct testing) at a meeting of the NY State medical society where there were many detractors from Yale & Stoneybrook who didn’t want their patented serological tests to be usurped. They accused him of falsifying his results.  Dr. McDonald then went on to prove conclusively it was Lyme by morphology, silver staining, monoclonal antibodies staining, DNA PCR and finally electron microscopy.  Frustrated, he quit the field and moved to Texas leaving all his old files in Burrascano’s basement until twenty years went by and he became interested again due to Alzheimer’s research & picked up his old files. https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

 

 

 

 

 

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Biomarker for Chronic Fatigue Syndrome Identified

http://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html

Biomarker for chronic fatigue syndrome identified

Stanford scientists devised a blood-based test that accurately identified people with chronic fatigue syndrome, a new study reports.
APR 292019

Ron Davis

Ron Davis is the senior author of a paper that describes a blood test that may be able to identify chronic fatigue syndrome.  Steve Fisch

People suffering from a debilitating and often discounted disease known as chronic fatigue syndrome may soon have something they’ve been seeking for decades:

scientific proof of their ailment

Researchers at the Stanford University School of Medicine have created a blood test that can flag the disease, which currently lacks a standard, reliable diagnostic test.

“Too often, this disease is categorized as imaginary,” said Ron Davis, PhD, professor of biochemistry and of genetics. When individuals with chronic fatigue syndrome seek help from a doctor, they may undergo a series of tests that check liver, kidney and heart function, as well as blood and immune cell counts, Davis said. “All these different tests would normally guide the doctor toward one illness or another, but for chronic fatigue syndrome patients, the results all come back normal,” he said.

The problem, he said, is that they’re not looking deep enough. Now, Davis; Rahim Esfandyarpour, PhD, a former Stanford research associate; and their colleagues have devised a blood-based test that successfully identified participants in a study with chronic fatigue syndrome. The test, which is still in a pilot phase, is based on how a person’s immune cells respond to stress. With blood samples from 40 people — 20 with chronic fatigue syndrome and 20 without — the test yielded precise results, accurately flagging all chronic fatigue syndrome patients and none of the healthy individuals.

The diagnostic platform could even help identify possible drugs to treat chronic fatigue syndrome. By exposing the participants’ blood samples to drug candidates and rerunning the diagnostic test, the scientists could potentially see whether the drug improved the immune cells’ response. Already, the team is using the platform to screen for potential drugs they hope can help people with chronic fatigue syndrome down the line.

A paper describing the research findings was published online April 29 in the Proceedings of the National Academy of Sciences. Davis is the senior author. Esfandyarpour, who is now on the faculty of the University of California-Irvine, is the lead author.

Providing the proof

The diagnosis of chronic fatigue syndrome, when it actually is diagnosed, is based on symptoms — exhaustion, sensitivity to light and unexplained pain, among other things — and it comes only after other disease possibilities have been eliminated. It is also known as myalgic encephalomyelitis and designated by the acronym ME/CFS.

It’s estimated that 2 million people in the United States have chronic fatigue syndrome, but that’s a rough guess, Davis said, and it’s likely much higher.

For Davis, the quest to find scientific evidence of the malady is personal. It comes from a desire to help his son, who has suffered from ME/CFS for about a decade. In fact, it was a biological clue that Davis first spotted in his son that led him and Esfandyarpour to develop the new diagnostic tool.

We clearly see a difference in the way healthy and chronic fatigue syndrome immune cells process stress.

The approach, of which Esfandyarpour led the development, employs a “nanoelectronic assay,” which is a test that measures changes in miniscule amounts of energy as a proxy for the health of immune cells and blood plasma. The diagnostic technology contains thousands of electrodes that create an electrical current, as well as chambers to hold simplified blood samples composed of immune cells and plasma. Inside the chambers, the immune cells and plasma interfere with the current, changing its flow from one end to another. The change in electrical activity is directly correlated with the health of the sample.

The idea is to stress the samples from both healthy and ill patients using salt, and then compare how each sample affects the flow of the electrical current. Changes in the current indicate changes in the cell: the bigger the change in current, the bigger the change on a cellular level. A big change is not a good thing; it’s a sign that the cells and plasma are flailing under stress and incapable of processing it properly. All of the blood samples from ME/CFS patients created a clear spike in the test, whereas those from healthy controls returned data that was on a relatively even keel.

“We don’t know exactly why the cells and plasma are acting this way, or even what they’re doing,” Davis said. “But there is scientific evidence that this disease is not a fabrication of a patient’s mind. We clearly see a difference in the way healthy and chronic fatigue syndrome immune cells process stress.”

Now, Esfandyarpour and Davis are expanding their work to confirm the findings in a larger cohort of participants. Recruitment for the larger project, which aims to further confirm the success of the diagnostic test, is being done on a rolling basis. Those who are interested in participating should contact clinical research coordinator Anna Okumu.

Doubling up

In addition to diagnosing ME/CFS, the researchers are also harnessing the platform to screen for drug-based treatments, since currently the options are slim.

“Using the nanoelectronics assay, we can add controlled doses of many different potentially therapeutic drugs to the patient’s blood samples and run the diagnostic test again,” Esfandyarpour said.

If the blood samples taken from those with ME/CFS still respond poorly to stress and generate a spike in electrical current, then the drug likely didn’t work. If, however, a drug seems to mitigate the jump in electrical activity, that could mean it is helping the immune cells and plasma better process stress. So far, the team has already found a candidate drug that seems to restore healthy function to immune cells and plasma when tested in the assay. The drug, while successful in the assay, is not currently being used in people with ME/CFS, but Davis and Esfandyarpour are hopeful that they can test their finding in a clinical trial in the future.

All of the drugs being tested are either already approved by the Food and Drug Administration or will soon be broadly accessible to the public, which is key to fast access and dissemination should any of these compounds pan out.

Davis is a member of Stanford Bio-X, the Stanford Cancer Institute and the Stanford Maternal & Child Health Research Institute.

Other Stanford authors of the study are research scientists Neda Nemat-Gorgani and Julie Wilhelmy and research assistant, Alex Kashi.

The study was funded by the Open Medicine Foundation. Davis is the director of the foundation’s scientific advisory board.

Stanford’s departments of Genetics and of Biochemistry also supported the work.

By HANAE ARMITAGE

Hanae Armitage is a science writer for the medical school’s Office of Communication & Public Affairs. Email her at harmitag@stanford.edu.
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**Comment**
A few things stick out:
  1. This researcher, like those doing the heavy lifting in the Lyme/MSIDS world, are personally vested. They find things because this is more than a job to them. They NEED answers for either themselves or their loved ones.
  2. “Not Looking deep enough,” is a problem in the Lyme/MSIDS world as well. Look deeper!
  3. Due to this man’s work, some patients are finally going to be taken seriously. This is HUGE.
  4. Notice that ME/CFS is a clinical diagnosis just like Lyme/MSIDS. Because testing is so poor or doesn’t exist, patients aren’t believed due to a number or lack of a number on paper. 
  5. I have to think that “eliminating other disease possibilities” is the fly in the ointment with ME/CFS. How can you eliminate Lyme/MSIDS when doctors can’t find it to begin with and they aren’t willing to look deeper?

 

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Activism, research, Testing

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Data Shows Lyme Disease Has Increased – Even in Areas That Aren’t Endemic

Laboratory Blood-Based Testing for Lyme Disease at a National Reference Laboratory.

Lee-Lewandrowski E, et al. Am J Clin Pathol. 2019.

Abstract

OBJECTIVES: We evaluated trends in Lyme disease (LD) testing at a national reference laboratory.

METHODS: LD screening enzyme immunoassay and Western blot testing data performed at Quest Diagnostics during 2010 to 2016 were analyzed nationally and at the state level.

RESULTS: Overall, 593,800 (11.3%) results were positive of 5,255,636 tests. There was an increase in the rate of positivity over the last 2 years of the study and an increase in the number of positive tests in 2016. Positive tests were observed in all 50 states and the District of Columbia. New York had the most positive tests, whereas Connecticut had the highest positivity rate when normalized to state populations. Some states with historically low rates of LD (eg, Texas, Florida, and California) showed significant increases in testing and positivity rates over time.

CONCLUSIONS: LD testing and positivity have increased in recent years, including in states not historically associated with the disease.

__________________

**Comment**

Please send this around. Nobody should EVER again be told,

“You can’t have Lyme because it doesn’t exist here.”

This study demonstrates it’s in every single state. Period.

Yet, this recent article shows people are still being told they can’t have it:  https://madisonarealymesupportgroup.com/2019/04/22/its-just-crazy-why-is-lyme-disease-treatment-so-difficult-to-find-in-mississippi/

 

 

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Terminix Launches New Tick Defend System As Tick-Borne Diseases Intensify

https://globallymealliance.org/news/terminix-launches-new-tick-defend-system-tick-borne-diseases-intensify/?

Terminix partners with Genevieve Gorder and will donate 10 percent of new tick product sales to Global Lyme Alliance

MEMPHIS, Tenn.–(BUSINESS WIRE)–Terminix, a leading provider of termite and pest control services and a ServiceMaster (NYSE: SERV) company, today announced its launch of the Terminix Tick Defend System™, an integrated pest management system that helps protect yards and homes from tick infestations.

The launch comes in partnership with Genevieve Gorder (Trading Spaces), the acclaimed celebrity designer who lives with Lyme disease. In recognition of Lyme Disease Awareness Month in May, Terminix will donate 10 percent of proceeds from its new Tick Defend System™ during the months of May, June and July to the Global Lyme Alliance to help raise awareness of the tick-borne illness and how to guard against it.

Available now, the Terminix Tick Defend System™ combines leading technology with technician expertise to help guard against all seven common tick species found across the country. The new service offering builds on the company’s strong track record of providing differentiated value to its customer base. The treatment is available as a one-time service, or as a monthly package for long-term protection. Customers are also able to combine the system with other Terminix pest and mosquito services, such as the Terminix Quick Guard® Mosquito Service, for the ultimate home defense against annoying and dangerous pests.

“We are committed to providing cleaner, healthier and safer environments to our customers. We fully understand our customers’ concerns about keeping their families protected from ticks and the diseases they can carry,” said Matthew Stevenson, president of Terminix Residential. “We have seen tick-borne disease cases increase and have strengthened our efforts to bring effective solutions to our customers. As a leader in the termite and pest industry, we are proud to partner with Genevieve Gorder and bring the Terminix Tick Defend System™ to market to provide peace of mind and offer our customers a new and innovative line of defense against these dangerous pests.”

“I know firsthand how devastating the impacts of Lyme disease can be,” said Genevieve Gorder. “I’m excited to be working with Terminix on the launch of their Tick Defend System™ which underscores the importance of tick protection while supporting the critical education and research made possible by Global Lyme Alliance.”

The partnership and product launch come as incidence rates for Lyme disease continue to rise. In the past two decades, the reported number of Lyme disease cases in the United States has tripled. Reports from the Centers for Disease Control and Prevention (CDC) suggest the disease is more common than reported, infecting approximately 300,000 Americans nationally each year. Victims often mistake early-stage Lyme disease as a flu-like illness, overexertion or sleep deprivation. Late-stage Lyme disease can affect multiple organs, including joints, heart, brain, and other parts of the central nervous system. About 75 percent of Lyme disease cases are associated with activities around the home such as play, yard or garden work.

In addition to preventative products, such as the Terminix Tick Defend System™, follow these tips to help guard against ticks:

  • Avoid areas with tall grass or leaf litter, as these are common places for ticks to hide. When hiking, stick to the center of trails to avoid brushing against vegetation.
  • Apply EPA-approved tick repellents, both on-skin and on-clothing.
  • After spending time outdoors, bathe as soon as possible (preferably within two hours) to wash off any ticks crawling on the skin and conduct a full-body check for ticks, paying close attention to the head, hair, in and around the ears, under the arms and behind the knees. If you’ve been bitten, remove ticks right away.
  • To remove a tick embedded in the skin, do not grasp it by the abdomen and pull. You may squeeze its fluids into the skin, increasing the chance for infection. Use fine-tipped tweezers to grasp the head of the tick and slowly pull backwards. Once the tick has been removed, cleanse the area well with soap and water.
  • Because pets, such as dogs or cats, are particularly susceptible to ticks, talk with your veterinarian about appropriate tick prevention products.

For more information or to schedule your Terminix Tick Defend System™ service, visit Terminix.com or call 1-800-Terminix.

About Terminix

Terminix is the leading provider of termite and pest control services in the United States. Headquartered in Memphis, Tenn., Terminix services approximately 2.8 million residential and commercial customers in 47 states and 18 countries. Terminix provides pest control services and protection against termites, rodents and other pests. Terminix is a business unit of ServiceMaster Global Holdings, Inc. (SERV), a leading provider of essential residential and commercial services. Terminix is the Official Pest Control Partner of Minor League Baseball™. To learn more about Terminix, visit www.Terminix.com.

About ServiceMaster

ServiceMaster (NYSE: SERV) solves the homeowner’s dilemma. Every day, we visit tens of thousands of homes and businesses through our extensive service network of expert professionals. Our well-recognized brands include AmeriSpec (home inspections), Copesan (commercial national accounts pest management), Furniture Medic (furniture and cabinet repair), Merry Maids (residential cleaning), ServiceMaster Clean (janitorial and residential floor cleaning), ServiceMaster Restore (disaster restoration), Terminix (termite and pest control) and Terminix Commercial (commercial termite and pest control). Like, follow or visit us at facebook.com/ServiceMaster, linkedin.com/ServiceMaster, twitter.com/ServiceMaster, or servicemaster.com. ServiceMaster is the Official Home Services Provider of Minor League Baseball™.

About Genevieve Gorder

Genevieve Gorder’s soulful style and genuine enthusiasm have made her one of America’s favorite interior designers for many years. She is the founder and director of the Genevieve Gorder brand, a television host and producer, home product designer, contributing author, and global ambassador for home and human rights.

Gorder has appeared and been featured in over 20 lifestyle shows around the world. You can find her work on Netflix, TLC, HGTV, Sony Channel Asia, The Design Network, and as a regular contributor on The Rachael Ray Show.

A two-time Emmy nominee and design host at the Obama White House, Genevieve has built multiple lifestyle collections for home—from rugs, textiles, wallpaper and stationery to a full line of furniture and décor for children with partner Crate & Barrel.

Off air and the internet, Genevieve designs for a diverse group of clients and companies. She has guided many hotels, restaurants, cruise lines, cities and private clients toward their design fantasies. She travels the globe with Oxfam as a Sister on the Planet ambassador, using her influence to fight global poverty, hunger and injustice, and using her platform of home to empower women and girls worldwide.

Gorder’s work has been featured in numerous publications both nationally and internationally. Currently, you can watch her latest Netflix series “Stay Here”, the TLC revival series Trading Spaces, and a new Bravo series airing spring of 2019.

About Global Lyme Alliance

Global Lyme Alliance is the leading 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness. GLA has gained national prominence for funding some of the most urgent and promising research in the field, while expanding education and awareness programs for the general public and physicians. We support those around the globe in need of information about tick-borne diseases. Learn more at GLA.org.

Contacts

Valerie Middleton | 901.487.3749 | vmiddleton@terminix.com
Emma Mazour | 612.244.2104 | emma.mazour@icfnext.com

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More on Tick Prevention:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

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