Archive for the ‘Lyme’ Category

IDSA Retracts Inaccurate Statement

https://lymediseaseassociation.org/home-page-featured/idsa-retracts-publication-that-contains-inaccurate-statement/

IDSA Retracts Publication that Contains Inaccurate Statement

According to a June 22 press release from the Patient-Centered Care Advocacy Group (PCCAG), in response to a complaint filed by PCCAG President Bruce Fries, the Infectious Diseases Society of America (IDSA) has removed the publication, “Ten Facts You Should Know About Lyme Disease,” from its website.

The release indicates that the IDSA leadership removed this publication after they were informed that the document contained an inaccurate statement that “Lyme disease is caused by bacteria called Borrelia burgdorferi that is only transmitted to humans when they are bitten by an infected tick….It is well documented that Lyme disease can be transmitted from mother to fetus and lead to adverse birth outcomes. Transmission of B. burgdorferi from mother to fetus in humans has been documented with Borrelia spirochetes identified in fetal tissues/and or placenta by various methods including culture, immunohistochemistry with use of specific monoclonal antibodies, indirect immunofluorescence, PCR and microscopy.”

Both CDC and NIH acknowledge this mode of transmission.

Bruce Fries also serves as an advisor for research and public policy for Mothers Against Lyme, a recently formed advocacy group, and PCCAG is an LDAnet partner organization.

Read full press release here. 

Lyme disease is a currently a trending clinical topic on Medscape, click here to read. 

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Many experts state that transmission can and does occur in numerous ways besides a tick bite and congenitally.
Sexual transmission:

UW’s very own Elizabeth Burgess found the same thing in dogs.

Fomites: (an inanimate object or substance that is capable of transmitting infectious organisms from one individual to another)
Person to Person: (tears, saliva, other insects, etc)

Category:

Activism, Lyme

How to Apply Repellent

https://www.globallymealliance.org/videos/how-to-apply-repellent

How To Apply Repellent

by Admin at Global Lyme Alliance on May 6, 2020

<img style="box-sizing:inherit;max-width:100%;height:auto;" src="https://www.globallymealliance.org/hubfs/Imported%20sitepage%20images/MyLymeLife_2-75.png&quot; alt="How To Apply Repellent“>
WHY TICK-BITE PREVENTION IS IMPORTANT

Increased tick activity combined with unreliable diagnostics and limited treatment options make diligent tick-bite prevention for the entire family of utmost importance. Even when diagnosed and treated early, up to 20% of people infected with Lyme disease continue to experience debilitating symptoms. For those not diagnosed early, treatment success can vary greatly. With late-stage or chronic Lyme disease, the bacteria can adversely affect multiple organ systems, joints, the heart, the brain, and parts of the central nervous system.

TICKS CARRY MORE THAN LYME DISEASE

The most common tick-borne illnesses are carried by blacklegged ticks (called deer ticks) that may also transmit several bacterial diseases including Babesiosis, Ehrlichiosis, and Anaplasmosis, which often result in infections coincident with Lyme. The same blacklegged tick, may also transmit the Powassan virus which can cause encephalitis and meningitis. Experts warn that viral infections may occur in as little as 15 minutes after a tick bite.

HOW TO BE TICK AWARE
  1. AVOID areas where ticks live. Ticks thrive in wood piles, long grass, leaf piles, and beach grass.
  2. WEAR light-colored clothing: long pants, sleeves, socks, and closed-toe shoes. APPLY EPA-approved, CDC-recommended tick repellent to skin and insecticide to clothing and shoes as directed.
  3. REMOVE clothing upon entering the home; toss into dryer at a high temperature for 10-15 minutes to kill ticks.
  4. EXAMINE yourself and your pets for ticks daily. Check everywhere — ticks love to hide!
CHOOSING A TICK REPELLENT

Body-worn repellents serve as the first line of defense for tick bites.

When choosing a tick repellent, it is important to select an EPA-approved, CDC-recommended active ingredient such as Picaridin 20%. “Picaridin 20% is recommended by the CDC, the World Health Organization, and Health Canada, is the leading active ingredient sold in European pharmacies,” said Chris L. Fuentes, Founder and CEO of Ranger Ready Repellents. “We created Ranger Ready with Picaridin 20% because it’s highly effective against ticks and can be safely worn by adults and children who must be protected every day.”

Go to RangerReady.com and use code GLA2021 for 10% off! As always, a portion of proceeds on rangerready.com go to GLA to advance our combined mission to protect future generations from tick bites and tick-borne illnesses.

For more prevention tips, visit BeTickAware.org

Global Lyme Alliance

Admin at Global Lyme Alliance

Global Lyme Alliance

Email: info@globallymealliance.org

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Category:

Lyme, Prevention, research, Ticks

2019 Lyme Case Numbers Finally Released by CDC

https://lymediseaseassociation.org/about-lyme/cases-stats-maps-a-graphs/delayed-cdc-lyme-final-lyme-case-numbers-for-2019-finally-released/

Delayed CDC Lyme Final Lyme Case Numbers for 2019 Finally Released

Deer Tick Questing

Lyme Disease Association (LDA) Announces CDC’s 2019 Final Lyme Disease Reported Case Numbers:  The Centers for Disease Control & Prevention (CDC) has just released the 2019 final Lyme disease reported U.S. case numbers–34,945. CDC reported that cases were ~4% more than in 2018, and the geographic distribution of areas with a high incidence of Lyme appears to be expanding based on data reported to National Notifiable Disease Surveillance System (NNDSS). The number of counties with an incidence of ≥10 confirmed cases per 100,000 persons increased from 324 in 2008 to 432 in 2019.

Reporting Delay Explained  Final Lyme disease case numbers are usually reported in the fall of the next year (for 2019, should have been reported in 2020). The CDC has responded to LDA inquiries over time that reporting was delayed due to the pandemic and thus to shortages of resources/personnel at many government levels, which was no surprise to anyone following the numbers’ delay.  CDC also had a note on the reporting page that “Due to the coronavirus disease 2019 (COVID-19) pandemic, data from some jurisdictions may be incomplete.” 

Past Estimates of Underreporting  In the past,  CDC has reported that only 10% of cases are actually reported─ that translates into 349,450 actual new Lyme cases in the US in 2019.  However, in 2021, the CDC announced that:

“A recently released estimate based on insurance records suggests that each year ~ 476,000 Americans are diagnosed & treated for Lyme disease(1,2). ” Prior Lyme estimates based on claims data had indicated “~300,000 people get Lyme disease  each year.”

It appears clear from the number of patients culled from insurance data as being diagnosed and treated annually for Lyme disease in the U.S. that cases are vastly under-reported. 

  1. Schwartz AM, Kugeler KJ, Nelson CA, et al. Use of Commercial Claims Data for Evaluating Trends in Lyme Disease Diagnoses, United States, 2010-2018. Emerg Infect Dis. 2021;27(2).
  2. Kugeler KJ, Schwartz AM, Delorey M, et al. Estimating the frequency of Lyme disease diagnoses —United States, 2010-2018. Emerg Infect Dis. 2021;27(2).

LDA NOTE:

  • The State of Hawaii does not require reporting of Lyme disease.
  • The State of New York estimates the Lyme numbers in many counties and those numbers are not permitted to be entered into CDC reported case numbers.
  • Massachusetts changed their reporting system and their numbers on paper have dramatically dropped in the past few years, moving them out of the top 15 states.  To see more states that have changed reporting of Lyme disease over time see  LDA Lyme Cases Map Page

Top 15 States  The LDA has ranked the top 15 states based on the CDC total reported Lyme case numbers for 2019 below. This ranking should not be construed to mean that other states do not have reported Lyme cases. They do have reported cases,  Click here for all states.

Often patients cannot get diagnosed and/or treated in states that CDC considers “low incidence” states.

Doctors in low incidence states are often either afraid to diagnose Lyme or do not understand that surveillance criteria are not meant as diagnostic criteria. 

Read about Diagnosis by Geography

LDA State Ranking by Reported CDC Lyme Cases

Category:

Lyme, research

Review of Evidence Supporting IDSA Guidelines EM Treatment in US

https://lymediseaseassociation.org/about-lyme/research-articles/peer-reviewed-articles/review-of-evidence-supporting-idsa-guidelines-em-treatment-in-us/

Review of Evidence Supporting IDSA Guidelines EM Treatment in US

2014 ElizabethMaloneyMD
Elizabeth Maloney, MD

The IDSA guidelines for Lyme disease contain 2 recommendations for antibiotic therapy for patients with erythema migrans (EM) rashes. The first recommendation identified which antibiotics were preferred and the second specified therapy duration.

In “Evidence-Based, Patient-Centered Treatment of Erythema Migrans in the United States,” Antibiotics 2021, author Elizabeth L. Maloney, MD, reviews the US trial evidence on EM rashes, problems of the IDSA recommendations considering that evidence, and provides evidence-based patient-centered strategies for managing patients with EM.

“The EM rash is the hallmark finding of early disease,” along with other symptoms. “In light of the physical and financial costs, identifying and promoting highly effective therapeutic interventions for US patients with erythema migrans (EM) rashes that return them to their pre-infection health status should be a priority.” 

The paper states:

“when promptly diagnosed and appropriately treated with antibiotics, early Lyme disease is curable.” Untreated and inadequately treated infections can progress to long-term sequalae. Patient-centered care–defined by the National Academy of Medicine—“…is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions. Patient-centered outcomes are outcomes that matter to patients, such as reductions in symptoms or improvements in quality of life.” In recent times, patient-centered outcomes are becoming part of trial designs.

Dr. Maloney uses a Medline search with specified criteria to identify the trials conducted in the US for the named antibiotics recommended by IDSA Lyme guidelines.  There were 25 results of which 8 met the search criteria, other 17 were EM trials in Europe, disseminated disease in Europe, European antibiotic retreatment, culture difficulty, and tick bite prophylaxis. The US trials were old, were small, and 2 had high non completion rates of 40%+ and two others had single arm with 20%+ non—completion, thus Dr. Maloney indicates these should not be included to determine treatment efficacy.

The paper goes on to examine the remaining US trials, several of which used disease centered endpoints, not patient centered endpoints, and all those trials used what is currently considered outdated statistical methodology, pointing out the weaknesses of the evidence used by IDSA. In the conclusion, Dr. Maloney highlights the need for more research.

Click here to read the entire study

Click here to read Johns Hopkins Lyme Research Center Challenges IDSA Guidelines & Addresses Lyme-COVID

Click here to see video of Bransfield & Smith Discuss IDSA Guidelines

Category:

Activism, Lyme, research, Treatment

Lyme Q & A: Dental Issues, Concussion Recovery, & Life Changes

https://www.globallymealliance.org/blog/dear-lyme-warrior…help

Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

June 28, 2021

I had a root canal and now my Lyme disease symptoms have flared. Is there a relationship between dental problems and Lyme?

I asked my Lyme Literate Medical Doctor (LLMD) the same question before I had my wisdom teeth removed a few years ago. I was worried that the procedure might cause my Lyme symptoms to flare. Because the oral surgeon was going to put me on antibiotics for a week after the procedure, in case of infection, my LLMD thought that medication would protect against a Lyme flare up. He was right. He did caution me, however, that a more invasive procedure like a root canal could exacerbate Lyme symptoms. Lyme is an inflammatory disease, and such a procedure can increase inflammation and potentially aggravate Lyme bacteria (spirochetes) living in the area. I recommend talking with your LLMD to see if you might need antibiotics or an anti-inflammatory regimen.

Patients experiencing oral or facial symptoms should consider whether tick-borne illness could be at play, as should their dentists. In the article “Dentists can help fight against tick-borne diseases” in the American Dental Association (ADA) News, Dr. Stacey Van Scoyoc, an Illinois dentist and member of the ADA Council on Dental Practice, states:

“Sometimes the dental patient may present nonspecific orofacial pain and headaches that can mimic temporomandibular joint point. Dentists should consider Lyme disease as a possible cause if a patient presents these or related symptoms and has no specific oral health problem.”

Does having Lyme disease make it harder to recover from a concussion?

Having Lyme disease can make it harder to recover from just about anything. You have an underlying inflammatory infection that your body is already working hard to battle, and now it needs extra energy to heal from a significant head injury. If your Lyme has crossed the blood-brain barrier and you are experiencing neurological symptoms, those could certainly be exacerbated because you now have double inflammation in your brain—from the Lyme, and from the concussion (or the concussion may have caused previous Lyme inflammation to flare).

Moreover, Lyme disease bacteria (spirochetes) love to hide out in scar tissue. When I was recovering from ACL surgery on my knee, I diligently did all of my physical therapy, but my leg was very slow to regain muscle. “This is terrible,” I remember the surgeon saying, telling me I needed to work harder. In fact, the recovery was slow because I had undiagnosed tick-borne illnesses. The muscle did eventually come back, but it took much longer than it would for an otherwise healthy person. I’ve learned that my underlying conditions generally slow down my recovery from both illness and surgery. As those conditions have improved, though, recovery times have, too, so don’t give up hope. You may want to check out my recent blog post “What Helps Improve Cognitive Function for Lyme Patients” for some ideas on helping your body recover.

I’m thinking of starting graduate school, but the last time I make a big life change, my Lyme disease relapsed. I don’t want Lyme to prevent me from pursuing my dreams, but I also want to be realistic. Do you have any advice?

Your story sounds a lot like mine. The first time I achieved remission, I went off antibiotics, moved to another state and started a new job. Three months later, I relapsed completely. It took another two years to get back to remission, and when I did, I was terrified of facing another relapse (see my “Fear of Relapse” post). Then, an opportunity arose to attend graduate school. I weighed risks and benefits. Could I manage the work load, and live on my own in a new city? I had outgrown my life in my home state, where I’d moved to convalesce. I’d made good progress in physical therapy. I had volunteered, and then taken on freelance writing jobs. I’d joined social groups. I decided that I had paced myself well enough during recovery that I was truly ready to take the next leap.

This time, I made preparations before I moved. I lined up doctors. I found local practitioners for adjunct therapies. I spoke with the Disabilities Office at my graduate school to make sure I could receive accommodations (like extensions) if needed. I explained my situation to my professors. I got in touch with friends in the area. Most importantly, I accepted that tick-borne illnesses would be coming with me on the journey; during my first move, I’d hoped to leave them behind.

My suggestion is to talk candidly with your doctor about where you are in your recovery. Does s/he think you are well enough to take this step, or might it be better to wait another year or two? With tick-borne illness, you have to keep the big picture in mind. I know how badly you want to pursue your dreams, but it’s better to wait until you’re really ready than to get so sick that you can’t pursue them at all. If you do decide to take this step, ask your doctor how you can best support yourself physically during a transition. If you’re moving to a new location, make sure you get a support network in place before you go. I’ll be cheering you on!

Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her using her email.

Email: lymewarriorjennifercrystal@gmail.com

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Category:

Activism, Dentistry, Lyme