Archive for the ‘Lyme’ Category

Raising Lyme Awareness One Car Magnet At a Time

https://www.lymedisease.org/lyme-awareness-car-magnets/

TOUCHED BY LYME: Raising awareness, one car magnet at a time

Dorothy Kupcha Leland

Oct. 28. 2021

A Pennsylvania teenager and her mom have come up with a great way to raise Lyme disease awareness in their community. They want to share the idea with everyone. And it’s so easy, you could even do it from bed.

Sarah P, who prefers not to give her last name, was bitten by a tick at age 13. She didn’t have a bull’s-eye rash, a fever, or joint pain—so her pediatrician said, “Nothing to worry about. You’re fine.” (Even though Pennsylvania is a hot bed for Lyme and other tick-borne diseases.)

Over the next several years, Sarah developed many seemingly unrelated symptoms that would come and go. Anxiety, headaches, leg pain. Followed by heart palpitations, GI issues, and memory problems. Eventually, POTS /dysautonomia symptoms set in, causing dizziness, nausea, and migraines.

No answers

Sarah saw a lot of specialists: a dysautonomia clinic, a neurologist, a G.I. doctor, an ENT, cardiologists, and physical therapists. Still, no answers and no improvement.

Then a neighbor told Sarah’s mom that her own daughter had been diagnosed with POTS as well. And it turned out that her POTS symptoms were caused by Lyme disease. Spurred on by their neighbor’s story, Sarah’s family sought out a Lyme-literate medical doctor. That LLMD diagnosed Sarah with Lyme and co-infections.

Throughout the arduous treatment process, Sarah and her mom wanted to warn other people about how one bite from an infected tick can ruin a person’s life. But how can you do anything when you are so sick and exhausted? How do you join a Lyme march in Washington or give a public speech when just getting out of bed is so difficult? The idea of Lyme advocacy seemed utterly impossible. And then Sarah had an idea.

Car magnets

While out on a drive with her mom, Sarah noticed a car sporting an awareness magnet for another disease. Hmmm, she thought. Could that work for Lyme? Would people even pay attention to it?

Then, she thought, what if you created a more specific magnet—such as NEURO Lyme Awareness, or CARDIO Lyme Awareness?

That might pique people’s curiosity. “NEURO Lyme? What the heck is THAT?” Such questions might lead them to pay more attention to the topic.

After a bit of research, the duo found that magnets can be quickly created via an online printing service or a local print shop. Soon, they turned their family van into a mobile bulletin board.

They’ve been so happy with the results, they want to share this idea with everybody.

Sarah and her mom have already done the design work. You are welcome to download the jpeg files from this blog—and create your own magnets.

Small magnets can be printed individually on rectangles or ovals, or several images can be placed on one large rectangular car magnet and cut apart easily with scissors.

Sarah’s mom negotiated with the online magnet printer StickyLife.com for a 15% discount if you use the following code: LYMEAWARE15. (Limited to one-time use per customer.)

Sarah, now 19, is in her second year of treatment and continues to fight for her health every day, Under the care of her LLMD, she says many of her symptoms have resolved. She reports that she can read again, enjoys writing her own music, and may start taking a couple of college courses.

Bravo, Sarah! I hope your health continues to improve and that these magnets will start popping up all over the country. I’ll be placing my order soon.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

Click on the download button below the design you would like. Right click the image and select “Save image as” to save to your computer. Go to an online magnet printing company (or a local print shop that makes magnets) and upload the file with your order. When you receive the magnets, you just stick them on your car. Easy-peasy!

Lyme Intestinal Magnet
DOWNLOAD DESIGN
Long Term Lyme Awareness
DOWNLOAD DESIGN
Saved By A LLMD
DOWNLOAD DESIGN
Anxiety Lyme Awareness
DOWNLOAD DESIGN
Lyme & Co-Infection Awareness
DOWNLOAD DESIGN
Congenital Lyme Awareness
DOWNLOAD DESIGN
I Love My LLMD
DOWNLOAD DESIGN
Cardio Lyme Awareness
DOWNLOAD DESIGN
Neuro Lyme Awareness
DOWNLOAD DESIGN
POTS and Lyme Awareness
DOWNLOAD DESIGN
All Lyme Magnet Designs
DOWNLOAD GROUP 11″ X 17″
Lyme Information
DOWNLOAD LYME INFORMATION

Related posts:

  1. TOUCHED BY LYME: Newly crowned Miss Solano teaches Lyme awareness
  2. TOUCHED BY LYME: Miss Sonoma County contestant chooses Lyme awareness as her platform
  3. TOUCHED BY LYME: Taking Lyme awareness into Berkeley’s Tilden Park
  4. TOUCHED BY LYME: Lyme awareness in the time of coronavirus

Category:

Activism, Lyme

Lyme Disease Advocacy Organization Meets With FDA

Press_Release_-_October_2021

LYME DISEASE ADVOCACY ORGANIZATION MEETS WITH FDA


BOSTON, MA (October 25, 2021) — Nonprofit grassroots organization TruthCures met with Food & Drug Administration (FDA) officials last week to discuss issues related to notoriously inaccurate Lyme disease diagnostic tests. The group’s executive director, Laura Hovind, and associate Lahra Tillman were joined by Carl Tuttle, an appointee to New Hampshire Governor John Sununu’s Lyme Disease Study Commission, and their legal counsel, a former federal prosecutor. Kenneth Liegner, M.D., a longtime treating physician, published author and renowned Lyme disease expert participated remotely to demonstrate the deficiencies of the Lyme disease diagnostic method and the harm it does to patients.


At issue are 27 years worth of FDA-cleared Lyme disease diagnostic tests. Lyme disease is a bacterial illness caused by the bite of an infected tick. TruthCures claims the diagnostics are wholly inadequate because they are designed to detect only a small minority of cases predisposed to developing “Lyme arthritis,” a less-severe manifestation of the disease. They cited published literature and historical federal meeting documents that indicate the sicker Lyme disease cases are immunosuppressed and rarely test positive by the criteria that have been in place for nearly three decades.


“We are extremely pleased with the FDA’s response so far and are encouraged by how quickly they understood the problem and began thinking of solutions available to them within the regulatory framework,” said Tillman.


In a detailed presentation, the group explained how Lyme disease researchers’ financial interests in patents for the various bacterial components of diagnostic tests and vaccines have been prioritized over public health. They also shared results of an independent analysis by a diagnostics regulatory expert indicating there may have been irregularities with the process by which Lyme disease diagnostic tests were relabeled in the late 1990s. “We are very concerned that patients were left out of the equation when changes were made to the testing protocol,” said Hovind.


The group requested the FDA’s assistance in investigating the manipulated diagnostic protocol and its far-reaching effects, as well as coordinating with other agencies to evaluate related accepted standards they claim are inadequate. “As a public servant myself, I applaud the FDA investigators’ efforts to understand and act on information provided by concerned citizens,” noted Amy Kissinger, a member of TruthCures’ board of directors. “We are confident in their dedication to do the right thing in terms of the regulatory component of our claims.”

Added Hovind, “Our goal has always been to expose the truth and clear the way for accurate tests so the millions suffering this devastating disease can get the diagnosis and treatment they need. This development should give them hope that someone is striking at the root of the problem, and change is on the way.”

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TruthCures is a registered 501(c)3 nonprofit organization dedicated to restoring a valid case definition for Lyme disease so all affected people can be accurately diagnosed and successfully treated. For more information, visit truthcures.org or email truth@truthcures.org.

Category:

Activism, Lyme, Testing

No Lyme Disease in California? That’s a Misplaced Impression

https://www.lymedisease.org/raeena-lari-lyme-in-california/

No Lyme disease in California? That’s a misplaced impression

Oct. 25, 2021

By Raeena Lari

Lyme disease is the most common and the fastest-growing vector-borne disease in the country, and constitutes a significant public health threat, with  476,000 new cases each year from 2010 to 2018.

This is a zoonotic bacterial infection transmitted to humans by the bite of infected blacklegged ticks, also known as deer ticks, found in 56 of 58—or 97%—of all counties in California.

Ticks are arachnids that attach to humans or animals to feed on blood. They are called vectors because when they feed on a Lyme-infected animal, they transmit it to the next human or animal they bite. The primary infective agent of Lyme is the spirochete bacteria Borrelia burgdorferi.

There is a misplaced impression that Lyme disease does not exist in California. In reality, tick season is year-round in California; a recent study found disease-carrying ticks near beaches, in equal rates to woodland habitats, in parts of northwestern California.

A single bite can transmit many diseases, termed co-infections, which makes the illness severe and complicated. The bite, unlike that of a mosquito, does not cause immediate irritation. In addition, nymphal ticks are the size of poppy seeds that are hard to detect.

Symptoms can be immediate or gradual

Some people get immediate symptoms (such as bone-crushing fatigue, fever, sore throat, migratory musculoskeletal pain, cognitive problems and sleep disturbances), while others experience a gradual onset of the same symptoms and descent into ill health. The myriad symptoms mimic many different diseases, earning Lyme the moniker “The Great Imitator,” making it harder to diagnose.

Lyme diagnostic tests remain unreliable and the classic bull’s-eye rash only shows in a subset of patients. Even when present, it may appear in a part of the body not noticeable—like the back of the head—or not recognizable.

Early diagnosis and treatment is key for a quick recovery, and that is where awareness can be life-altering. If left untreated, Lyme disease can affect all organs of the body, including the brain, nervous system (causing meningitis and encephalitis) and heart (causing Lyme carditis and sometimes death).

To increase awareness, Santa Clara County has promoted National Lyme Disease Awareness Month and the Centers for Disease Control and Prevention’s online Tick Lunch and Learn Series on its Facebook pages. In addition, the Board of Supervisors passed a commendation in August 2020 to recognize the prevalence of Lyme disease.

I applaud Supervisor Dave Cortese (now State Senator) and the County of Santa Clara Board of Supervisors’ actions. I am confident that they will continue to bring attention to this important issue.

My family was exposed at a Santa Clara County park. The debilitating illness took us to 26 different doctors and specialists over an entire year, before a diagnosis was eventually made because of the widespread and mistaken notion that Lyme does not exist in California.

Let’s make this statewide

This needs to be extended throughout our state. Nonprofit organizations like LymeDisease.org and the Bay Area Lyme Foundation are working to raise awareness and support medical research. Their websites, as well as that of the California Department of Public Health, provide invaluable information including simple prevention strategies.

COVID and Lyme disease have many overlapping symptoms and similarities, creating the potential for misdiagnosis. In a subset of Lyme patients, symptoms can persist even after treatment, reminiscent of long-haul COVID. Long-haul COVID and chronic Lyme also have overlapping longer term symptoms such as extreme fatigue, pain and cognitive dysfunction.

We must recognize the struggle of millions suffering because long-haul COVID and chronic Lyme have become persistent infections for them. Our medical system needs resources and support to treat, cure and eradicate the diseases, otherwise the number of chronically ill and disabled people will continue to grow exponentially, triggering economic and social ramifications that will impact us all.

Raeena Lari, a resident of San Jose, serves as vice chairperson of the County of Santa Clara Health Advisory Commission. This article was published in the San Jose Spotlight.

Related posts:

  1. NEWS: Tick-borne RMSF death in Southern California
  2. TOUCHED BY LYME: No Lyme in California?
  3. TOUCHED BY LYME: CDC’s map gives wrong impression. There are no “safe” states.
  4. NEWS: Tick-borne miyamotoi pathogen found in 19 California counties

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Category:

Activism, Lyme, Ticks, Viruses

New Guidance for Treatment of Lyme & Other TBD in Pregnancy

https://www.lymedisease.org/lyme-pregnancy-guidance/

New guidance for treatment of Lyme and other TBD in pregnancy

Oct. 27, 2021

from the Lyme Disease Association website:

In a recently published review article,* authors provide a comprehensive summary of treatment options for pregnant patients with less common bacterial, fungal, and viral infections, including several tick-borne diseases (Lyme disease, ehrlichiosis, human granulocytic anaplasmosis, human monocytic ehrlichiosis, babesiosis, and Rocky Mountain spotted fever).

This review provides guidance to clinicians based on the most recently published evidence-based research and expert recommendations.

The review included a search of MEDLINE (inception to March 2021); clinical practice guidelines (both national and international); the CDC website; and additional references from bibliographies of noteworthy articles. The review also provides a list of medications on the WHO Essential Medications List that are used to treat the above infections (*Alyssa P. Gould et al., Drugs in Context-peer reviewed).

A summary of key treatment recommendations from the review article for several tick-borne diseases during pregnancy are as follows:

Lyme disease:

  • Treatment of gestational Lyme disease is essential to reduce adverse outcomes in pregnancy. The data shows adverse outcomes in treated pregnancy is (11–16%) compared to untreated disease (50–60%).
  • Doxycycline should not routinely be used in pregnancy for Lyme disease in order to avoid adverse side effects including transient suppression of bone growth and staining of developing teeth, especially with proven alternatives.
  • Amoxicillin is the preferred treatment in the absence of neurological manifestations or atrioventricular heart block.
  • Ceftriaxone is typically reserved for patients with severe neurological or cardiac manifestations.
  • One study noted a non-significant increase in adverse pregnancy outcomes, such as pregnancy loss, among orally treated (31.6%) compared to parenterally treated (12.1%) pregnant patients.
  • Alternative oral therapy is cefuroxime axetil and parenteral therapies include penicillin G or cefotaxime.
  • Late Lyme disease (often manifesting as Lyme arthritis) may be managed with oral or parenteral β-lactams.

Ehrlichiosis & Anaplasmosis:

  • If infections with anaplasmosis or ehrlichiosis is suspected, treatment should be initiated due to the likelihood of complications and potential for vertical transmission of disease.
  • Rifampin has shown in vitro activity against ehrlichia and has been used successfully in limited case reports of pregnant women with anaplasmosis.
  • Doxycycline has been used successfully to treat ehrlichiosis.
  • Due to a lack of data, these pregnant patients should be closely monitored for resolution of disease.
  • The addition of amoxicillin or cefuroxime is suggested if coinfection with Lyme disease is suspected, as rifampin does not have activity against B. burgdorferi.

Babesiosis:

  • Patients with suspected babesiosis should be treated due to potential complications, including possible vertical transmission to the fetus.
  • Combination therapy is preferred with clindamycin plus quinine.
  • Longer treatment courses or retreatment may be needed in cases with symptoms and/or parasitaemia persisting >3 months. Resolution of parasitaemia should be used to determine treatment course.

Rocky Mountain spotted fever (RMSF):

  • RMSF cases are associated with poor outcomes for the fetus, regardless of the treatment.
  • Prevention is crucial for pregnant patients, and treatment should be provided within 3–5 days of exposure.
  • Doxycycline is the preferred therapy. Treatment course is typically 5–7 days or 3 days after fever resolution.
  • Chloramphenicol is a proposed alternative treatment; but there are concerns for significant adverse effects, including myelosuppression, aplastic anaemia, and grey baby syndrome, specifically at or near birth, and it is associated with higher mortality in RMSF. (chloramphenicol is not available orally in the US).

Read the full review article here.

Read other LDA articles regarding treatment here

Related posts:

  1. IDSA issues new, separate treatment guidelines for babesiosis
  2. TOUCHED BY LYME: CDC allows “possibility” of mother-fetus Lyme transmission
  3. Lyme Disease Co-Infections
  4. IDSA publishes new Lyme disease treatment guidelines

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**Comment**

Please remember there is great controversy in treating Lyme/MSIDS, even among experienced Lyme literate doctors.  There is quite a bit of trial and error involved as testing is so abysmal.  Wise clinicians diagnose and treat this clinically based upon symptoms, not solely upon testing.  Often, once treatment for Lyme starts and the pathogen load is reduced, other coinfections become noticeable requiring other medications.

For more:

Category:

Anaplasmosis, Babesia, Ehrlichiosis, Lyme, Pregnancy, Rocky Mountain Spotted Fever, Treatment

Increase in Tick Bites During COVID-19 Pandemic

https://danielcameronmd.com/increase-in-tick-bites-during-covid-19-pandemic/

Increase in tick bites during COVID-19 pandemic

tick-bites-COVID-19

In a recent article, “Effects of COVID-19 Pandemic on Reported Lyme Disease, United States, 2020,” McCormick and colleagues assessed how the pandemic might influence the risk of tick bites and affect patients seeking medical care and the reporting of Lyme disease cases.

By

“The data suggested that individuals were more likely to spend time outside, more likely to visit the CDC website describing tick bite removal, were less likely to visit an ER, and tested for Lyme disease,” according to the authors.¹

Approximately 50% of U.S. residents spent more time outdoors in 2020 than in 2019, but fewer tick bite–related emergency department visits and Lyme disease laboratory tests were reported, according to a survey by Porter Novelli.¹ “Only 20.9% of respondents reported spending less time outdoors in 2020.”

Furthermore, there was an 25% increase in visits to the CDC’s website page which describes tick bite removal procedures.

ED visits for tick bites

Despite an increase in tick bite exposures, there was a decrease in the number of individuals visiting the Emergency Department (ED) for tick bites and fewer tests for Lyme disease. “The largest relative decreases were observed in May,” according to the authors.

During the month of May, between 2017 and 2019, there was an average of 12,693 ED visits for tick bites. However, in May 2020, only 5,845 ED visits for tick bites occurred. And, the number of Lyme disease tests decreased by 25%.

“These findings suggest that the risk of acquiring Lyme disease was similar or potentially higher in 2020 compared with risk during prior years, but fewer persons sought care, and fewer positive laboratory reports were referred for case investigation.”

The authors point out, “Lyme disease case reporting for 2020 might be artificially reduced due to coronavirus disease–associated changes in healthcare-seeking behavior,” the authors point out.

 Editor’s perspective

I have had Lyme disease patients who have put delayed visiting the Emergency Department or their doctor’s office during the COVID-19 pandemic.  I’ve also had Lyme disease patients who were initially tested for COVID-19 but not Lyme disease. Their treatment for Lyme disease was delayed, making it more difficult to treat them.

References:
  1. McCormick DW, Kugeler KJ, Marx GE, et al. Effects of COVID-19 Pandemic on Reported Lyme Disease, United States, 2020. Emerg Infect Dis. Oct 2021;27(10):2715-2717. doi:10.3201/eid2710.21090

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For more:

Category:

Lyme, Prevention, research, Ticks