The Mistreatment of People With Lyme Disease Needs to End

•May 19, 2018 • Leave a Comment

*Excerpted from Yahoo! : (05/08/2018)

Since it’s Lyme Disease Awareness Month, I’d like to shed light on the real difficulties and darkness that comes only with chronic Lyme disease. It’s its own specific nightmare of an invisible illness – those who have it only truly understand how hard each day really is, and why.

Let’s start with the origin, ticks. We don’t know much about these insects. They often aren’t seen as real threats. These bugs can carry up to 16 co-infections, some fatal. Ticks can be as tiny as a poppyseed, so how do we stand any chance against finding a tiny dot on our body? Or on our pets? Knowing this tiny creature has ruined my body and lives just outside my doorstep fills me with fear. How can I walk across grass comfortably again? Or lay on a blanket in the sun?

Once bitten, the bullseye rash may or may not develop. At your primary doctor’s office, they generally run standard CDC-approved testing for Lyme. This does not cover different levels of Lyme disease, or any co-infections. So even if you do the right thing and go to the doctor, get tested, your results are not always reliable. And you may continue living with a disease continuing to destroy your body.

Related:5 Ways You Can Support a Healthy Friend If You’re Chronically Ill

There can be years, actual years and years of people’s lives that are falling apart due to misunderstood symptoms. Jobs are hard to keep up with, relationships are just a struggle. So much is blamed on stress, or our “crazy” mind. It may feel random but after a while, you know when something is wrong, but what?

There’s no cure for chronic Lyme. If you are able to afford or have your insurance cover an appointment with a Lyme-literate medical doctor (LLMD), all your hopes may ride on this one doctor and practice to save you. That doctor can become powerful since we often no longer have resources. And these doctors may be at risk themselves, for losing their licenses or more. Finding the right LLMD can be the make it or break it moment of our lives.

Most Lyme patients don’t just get handed medical professionals who actually understand what’s happening. Often we are ignored, turned away from services, unable to afford help or just don’t know where to go. Many can be very hurtful with their choice of words, and treat us like we don’t have Lyme, actually causing more damage. Any medical professional can lead us down the wrong path. So while fighting for our lives, we have to have the wherewithal to see if this professional first believes in my disease, and actually cares about me as a human.

Related:12 Little-Known Symptoms of Lyme Disease — in Photos

 

For more: https://www.yahoo.com/news/mistreatment-people-lyme-disease-needs-170001143.html

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Tick and Mosquito Infections Spreading Rapidly, C.D.C. Finds

•May 4, 2018 • Leave a Comment

Excerpted from The NY Times : (05/01/2018)

Farewell, carefree days of summer.

The number of people getting diseases transmitted by mosquito, tick and flea bites has more than tripled in the United States in recent years, federal health officials reported on Tuesday. Since 2004, at least nine such diseases have been discovered or newly introduced here.

The Centers for Disease Control and Prevention did not suggest that Americans drop plans for softball games or hammock snoozes. But officials emphasized that it’s increasingly important for everyone — especially children — to be protected from outdoor pests with bug repellent.

New tickborne diseases like Heartland virus are showing up in the continental United States, even as cases of Lyme disease and other established infections are growing. On island territories like Puerto Rico, the threat is mosquitoes carrying viruses like dengue and Zika.

Warmer weather is an important cause of the surge, according to the lead author of a study published in the C.D.C.’s Morbidity and Mortality Weekly Report.

But the author, Dr. Lyle R. Petersen, the agency’s director of vector-borne diseases, declined to link the increase to the politically fraught issue of climate change, and the report does not mention climate change or global warming. Many other factors are at work, he emphasized, including increased jet travel and a lack of vaccines.

C.D.C. officials called for more support for state and local health departments. Local agencies “are our first line of defense,” said Dr. Robert Redfield, the new director at the agency, which is facing its own deep budget cuts. “We must enhance our investment in their ability to fight these diseases.”

Although state and local health departments get brief infusions of cash during health scares like the Zika epidemic in 2016, they are chronically underfunded. A recent survey of mosquito control agencies found that 84 percent needed help with such basics as surveillance and testing for resistance to pesticides, Dr. Petersen said.

[READ: Tips for Protecting Yourself Against Mosquitoes and Ticks]

Between 2004 and 2016, about 643,000 cases of 16 insect-borne illnesses were reported to the C.D.C. — 27,000 a year in 2004, rising to 96,000 by 2016. (The year 2004 was chosen as a baseline because the agency began requiring more detailed reporting then.)

The real case numbers were undoubtedly far larger, Dr. Petersen said. For example, the C.D.C. estimates that about 300,000 Americans get Lyme disease each year, but only about 35,000 diagnoses are reported.

The study did not delve into the reasons for the increase, but Dr. Petersen said it was probably caused by many factors, including two related to weather: ticks thriving in regions previously too cold for them, and hot spells triggering outbreaks of mosquito-borne diseases.

Other factors, he said, include expanded human travel, suburban reforestation and a dearth of new vaccines to stop outbreaks.

More jet travel from the tropics means that previously obscure viruses like dengue and Zika are moving long distances rapidly in human blood. (By contrast, malaria and yellow fever are thought to have reached the Americas on slave ships three centuries ago.)

A good example, Dr. Petersen said, was chikungunya, which causes joint pain so severe that it is called “bending-up disease.”

For more: https://www.nytimes.com/2018/05/01/health/ticks-mosquitoes-diseases.html?emc=edit_na_20180501&nl=breaking-news&nlid=67821130ing-news&ref=headline

These invasive ticks can appear in such numbers that they drain cattle of their blood — and they’ve now been found in the US for the first time

•March 10, 2018 • Leave a Comment

Excerpted from MSN : (03/08/2018)

New Jersey residents know they need to look out for ticks. The state has one of the highest concentrations of Lyme disease in the country.

But one recent finding could lead Garden State residents to keep an even closer eye out for the bloodsuckers than normal.

Somehow, an east Asian tick that has the ability to essentially clone itself and is a noted invasive species in other parts of the world made its way to Hunterdon County.

And it wasn’t just an isolated tick. There were more than 1,000 found in the western area of New Jersey.

The story began in August 2017, when a resident showed up at the Hunterdon County Health Department with samples of the ticks that had started crawling on her arm while she’d been shearing a sheep.

Health department officials noticed that the resident’s clothes were covered with the creatures, all tiny larval specimens.

“I get this call from my assistant and he said, ‘We’ve got a resident here who showed up covered in ticks; she’s panicking; now we’re panicking and her pants are in our freezer,'” Tadhgh Rainey, the head of the health department and lead author on a report documenting the incident, told NPR.

The researchers were able to tell that the ticks belonged to the Haemaphysalis genus, but the specimens didn’t match any known Western Hemisphere species. After further analysis, they identified the culprit: Haemaphysalis longicornis, a tick native to East Asia. The species can be parthenogenetic, meaning the ticks can reproduce asexually, essentially cloning themselves (this study provides more details on the unique reproductive processes of these particular ticks).

Other regions of the world have had serious problems with this tick, which is capable of “intense infestations,” according to the study. Sometimes the insects have even killed animals by draining them of blood, a phenomenon known as exsanguination.

For more: https://www.msn.com/en-us/health/medical/these-invasive-ticks-can-appear-in-such-numbers-that-they-drain-cattle-of-their-blood-%e2%80%94-and-theyve-now-been-found-in-the-us-for-the-first-time/ar-BBJIhpZ?li=BBnba9O

Severe, lingering symptoms seen in some patients after Lyme disease treatment

•February 14, 2018 • Leave a Comment

Excerpted from John Hopkins Univ. : (02/02/2018)

In a study of 61 people treated for the bacteria that causes Lyme disease, Johns Hopkins researchers conclude that fatigue, pain, insomnia, and depression do indeed persist over long periods of time for some people, despite largely normal physical exams and clinical laboratory testing.

“Post-treatment Lyme disease syndrome (PTLDS) is a real disorder that causes severe symptoms in the absence of clinically detectable infection,” says John N. Aucott, associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center.

The findings, published in the December issue of Frontiers in Medicine, could spur further investigation into the cause of persistent symptoms, a source of medical controversy.

An estimated 300,000 people in the U.S. are diagnosed with the disease each year, and as Lyme disease rates have steadily climbed, so have reports of a collection of symptoms that patients commonly refer to as chronic Lyme disease. Experts in the field have questioned the validity of this term because of the lack of direct evidence in this group of patients of ongoing infection with Borrelia burgdorferi, the bacterium that causes Lyme disease.

Efforts to better understand patients with these symptoms have largely failed, says Aucott, because patients grouped under the umbrella term “chronic Lyme disease” could belong to one of various subgroups.

“People have been comparing apples to oranges by grouping all of those with chronic Lyme disease together,” he says. “Our study was designed to compare apples to apples.”

To do that, Aucott and his colleagues first agreed to study individuals with PTLDS, a disorder defined by the Infectious Diseases Society of America as the development of significant fatigue, widespread musculoskeletal pain, and/or cognitive difficulties that arise within six months after completion of antibiotic therapy for physician-documented Lyme disease and that last for at least six months. They meticulously gathered prior medical records for evidence of Lyme disease and excluded patients with conditions that may mimic those of PTLDS.

Aucott cautions that because so little is known about the origins of PTLDS, its underlying cause has remained unclear, and a range of hypotheses exist. This study, and the term “PTLDS,” do not define the cause of the condition, but do provide a starting place for future studies.

For more: https://hub.jhu.edu/2018/02/02/lingering-severe-chronic-lyme-disease-symptoms/

 

For more: https://www.lymedisease.org/lyme-patients-sue-idsa-insurers/

Lyme patients file lawsuit against IDSA and insurers over treatment denials

•November 16, 2017 • Leave a Comment

Excerpted from LymeDsease.org :  (11/14/2017)

TEXARKANA, Texas (CN) – Twenty people claim in a federal antitrust lawsuit that Lyme disease victims are being forced to pay hundreds of thousands of dollars for treatment because health insurers are denying coverage with bogus guidelines established by their paid consultants, who falsely say the disease can always be cured with a month of antibiotics.

Suffering from migraine headaches, an irregular heartbeat, hearing problems and nerve pain, lead plaintiff Lisa Torrey says in the lawsuit filed Friday in Texarkana, Texas federal court that she visited 36 doctors, some of whom misdiagnosed her with multiple sclerosis and fibromyalgia and said her symptoms “were all in her head,” before she was properly diagnosed with Lyme disease.

People get the disease from the bites of infected ticks and many break out with a large red rash around the bite that looks like a bullseye.

There were more than 28,000 confirmed cases of Lyme disease in the United States in 2015, 95 percent of which came from  14 states in the Northeast and Midwest, according to the Centers for Disease Control and Prevention. The agency estimates that 300,000 people are infected with the disease each year.

Torrey – represented by lead attorney Eugene Egdorf with Shrader & Associates in Houston – lays part of the blame for her lack of health insurance coverage on the Infectious Diseases Society of America, or IDSA, a medical association whose 11,000 members research diseases and lead panel discussions about them. IDSA also develops clinical practice guidelines.

Torrey claims in her lawsuit that several major health insurers decided in the 1990s that treating Lyme disease was too expensive and bad for their bottom lines, so they paid IDSA-affiliated doctors – who were researching, not treating, Lyme disease – to establish arbitrary guidelines in 2000 that said the disease could be treated with 28 days of antibiotics.

“These doctors knew that short term antibiotics of twenty-eight days failed to treat up to 40 percent of patients with Lyme disease.  This means more than 100,000 Lyme disease patients every year would be untreated if the IDSA guidelines were followed,” the lawsuit states.

For more: https://www.lymedisease.org/lyme-patients-sue-idsa-insurers/

Do Microbes Trigger Alzheimer’s Disease?

•September 9, 2017 • Leave a Comment

Excerpted from The Scentist :  (09/01/2017)

In late 2011, Drexel University dermatology professor Herbert Allen was astounded to read a new research paper documenting the presence of long, corkscrew-shape bacteria called spirochetes in postmortem brains of patients with Alzheimer’s disease.1 Combing data from published reports, the International Alzheimer Research Center’s Judith Miklossy and colleagues had found evidence of spirochetes in 451 of 495 Alzheimer’s brains. In 25 percent of cases, researchers had identified the spirochete as Borrelia burgdorferi, a causative agent of Lyme disease. Control brains did not contain the spirochetes.

The study made Allen think back to 40 years earlier, when he was an intern at Johns Hopkins University and had treated a patient diagnosed with neurosyphilis, a neurological syndrome that included dementia and resulted from the invasion of the syphilis spirochete into the brain. “The parallel between Lyme disease and syphilis had me intrigued,” he says.

Allen had recently proposed a novel role for biofilms—colonies of bacteria that adhere to surfaces and are largely resistant to immune attack or antibiotics—in eczema. He suggested that because biofilms block skin ducts and trigger innate immune responses, they may cause the stubborn skin condition. Allen knew of recent work showing that Lyme spirochetes form biofilms,2which led him to wonder if biofilms might also play a role in Alzheimer’s disease. When Allen stained for biofilms in brains from deceased Alzheimer’s patients, he found them in the same hippocampal locations as amyloid plaques.3 Toll-like receptor 2 (TLR2), a key player in innate immunity, was also present in the same region of the Alzheimer’s brains but not in the controls. He hypothesizes that TLR2 is activated by the presence of bacteria, but is locked out by the biofilm and damages the surrounding tissue instead.

Spirochetes, common members of the oral microbiome, belong to a small set of microbes that cross the blood-brain barrier when they’re circulating in the blood, as they are during active Lyme infections or after oral surgery. However, the bacteria are so slow to divide that it can take decades to grow a biofilm. This time line is consistent with Alzheimer’s being a disease of old age, Allen reasons, and is corroborated by syphilis cases in which the neuroinvasive effects of spirochetes might appear as long as 50 years after primary infection.

Allen’s work contributes to the revival of a long-standing hypothesis concerning the development of Alzheimer’s. For 30 years, a handful of researchers have been pursuing the idea that pathogenic microbes may serve as triggers for the disease’s neuropathology. Most came across the connection serendipitously, as Allen did, and some have made it their life’s work, in spite of scathing criticism and related challenges in attracting funding and publishing results.

For more: http://www.the-scientist.com/?articles.view/articleNo/50208/title/Do-Microbes-Trigger-Alzheimer-s-Disease-/

Fighting Lyme disease: In R.I., a dose of antibiotic without a prescription

•July 30, 2017 • Leave a Comment

Excerpted from Providence Journal:  (07/29/2017)

Program allows S. Kingst wn pharmacy to offer drug for tick bites meeting strict criteria: It must be a deer tick of a certain size found within 72 hours of the bite

SOUTH KINGSTOWN — A family-owned pharmacy in this seaside town recently began dispensing antibiotics to people without prescriptions to reduce the risk of developing Lyme disease.

Green Line Apothecary announced in late June that it is offering the single 200-mg prophylactic dose of doxycycline to adults within 72 hours of a deer tick bite if they meet the U.S. Centers for Disease Control and Prevention’s criteria for infection risk.

Proponents of the program — reportedly the first of its kind in the country — say it serves an important public health need by expanding timely access to treatment that could prevent more people from developing the potentially debilitating disease. And they hope it will become a national model.

But experts caution that expanding access to antibiotics to prevent Lyme disease may do more harm than good. Most people who will get the preventative treatment, they say, would likely never have developed Lyme disease. For those who are infected, some doctors worry a prophylactic dose may not be enough to prevent the patient from getting sick. And misuse or overuse of antibiotics can contribute to another major public health problem: antibiotic resistance.

The pharmacy program follows passage of legislation by the Rhode Island General Assembly in 2016 that expands pharmacists’ role to include initiation of drug therapies under so-called collaborative practice agreements.

The state health department’s approval of the Green Line program comes amid growing public concern over Lyme disease, which each year is diagnosed in roughly 30,000 people in the country, 95 percent of them in 14 states including Rhode Island, according to the U.S. Centers for Disease Control and Prevention.

In 2015, Rhode Island reported 904 diagnosed cases of Lyme disease, the 11th-highest rate in the country, according to the CDC.

“As a state we are always looking at ways to be proactive in reducing the incidence of Lyme disease,″ said Dr. Nicole Alexander-Scott, the state health director who, on June 12, signed a two-year collaborative practice agreement with Green Line. The pharmacy program, she said, is “one of those approaches.”

Washington County is Rhode Island’s ground zero for Lyme disease, with nearly twice the statewide rate, state health data show.

“Everybody knows someone who has been impacted by Lyme,” said Anita N. Jacobson, a pharmacist and clinical associate professor at the University of Rhode Island College of Pharmacy.

Christina Procaccianti, a pharmacist and Green Line’s owner, is one of those people. The vintage-style pharmacy and soda fountain opened in 2016 on Main Street in Wakefield.

Procaccianti, 34, contracted Lyme disease in 2011, while she was pregnant. After an eight-week course of antibiotics, she said, she made a full recovery and delivered a healthy baby girl. “I know how awful Lyme is,”

she said.“If we can prevent it for anybody,” she said, the effort will be a success.