Don’t Assume Your Symptoms Mean COVID. Could Be Lyme Disease

April 13, 2021

https://www.lymedisease.org/lyme-sci-dont-assume-your-symptoms-mean-covid-could-be-lyme-disease/

LYME SCI: Don’t assume your symptoms mean COVID. Could be Lyme disease.

April 5, 2021

By Lonnie Marcum

covid or lyme

As the COVID-19 pandemic continues, there are reports of some unintended consequences, including delayed or missed diagnosis of Lyme disease.

The initial symptoms of Lyme disease can be very similar to COVID-19, with generalized “flu-like symptoms” including fever, chills, sweats, headache, fatigue, muscle and joint pain.

In a recently published case study, a previously healthy 67-year-old man developed sudden onset flu-like symptoms after working outdoors in rural Pennsylvania. He was seen in an urgent care facility and suspected of having COVID-19. He was diagnosed with “viral-like illness” and sent home to await test results.

Negative COVID test. Now what?

The COVID-19 test was negative, and over the next six weeks many of the patient’s flu-like symptoms resolved. However, he developed a skin rash. A dermatologist diagnosed him with an “insect bite” and ordered a test for Lyme disease, which came back positive.

We know from previous studies that delays in treatment for Lyme disease by as little as 30 days are associated with patients having persistent symptoms.

In our own MyLymeData published research, over 84% of Lyme patients were not properly diagnosed within the first four months of illness when antibiotics are most effective.

In this case, after a week of oral doxycycline, the patient developed several neurological symptoms including double vision, neck stiffness and pronounced fatigue. He was diagnosed with sixth nerve palsy and switched to oral cefuroxime.

It appears that the initial six-week delay in treatment resulted in disseminated Borrelia burgdorferi infection and neuroborreliosis. (Note: In Lyme disease, sixth cranial nerve palsy is not as common as seventh nerve facial palsy—also known as Bell’s palsy)

Once meningitis was ruled-out (by MRI and negative cerebral spinal fluid test), the patient was switched back to a higher dose of oral doxycycline for an additional four weeks.

At his follow-up appointment, the patient reported continuing insomnia, anxiety, fatigue, brain fog, and slight double vision. 

Could earlier treatment have avoided neuro symptoms?

The patient says, “In my case, once the rash was observed, Lyme disease was considered to be the cause of my illness. However, the rash did not take place until more than five weeks after the initial symptoms were encountered. Had Lyme disease been considered in the first stages, perhaps treatments would have prevented the neurological/vision problems that developed later.”

The authors of the case study state, “Although COVID-19 has overlapping symptoms with other conditions, the need to exclude COVID-19 infection should not distract the clinician from simultaneous evaluation for infectious diseases that will benefit from early diagnosis and prompt treatment.”

This spring, millions of Americans will seek out testing for COVID-19 due to sudden onset of flu-like symptoms. When those tests come back negative, I sincerely hope their doctor will consider the possibility that they may have contracted Lyme or another tick-borne disease.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. In 2019-2020, she served on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org .

References

Cheryl B. Novak, Verna M. Scheeler, John N. Aucott, “Lyme Disease in the Era of COVID-19: A Delayed Diagnosis and Risk for Complications”, Case Reports in Infectious Diseases, vol. 2021, Article ID 6699536, 4 pages, 2021. https://doi.org/10.1155/2021/6699536

Hirsch AG, Poulsen MN, Nordberg C, Moon KA, Rebman AW, Aucott JN, Heaney CD and Schwartz BS (2020) Risk Factors and Outcomes of Treatment Delays in Lyme Disease: A Population-Based Retrospective Cohort Study. Front. Med. 7:560018. doi: 10.3389/fmed.2020.560018

Johnson L, Aylward A, Stricker RB. Healthcare access and burden of care for patients with Lyme disease: a large United States survey. Health Policy. 2011 Sep;102(1):64-71. Available from: http://www.ncbi.nlm.nih.gov/pubmed/21676482.

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Lyme, Viruses

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Early Warning: Lab Test Can Detect Acute Lyme Disease From a Single Cell

April 12, 2021

https://www.lymedisease.org/detect-acute-lyme-single-cell/

Early warning: Lab test can detect acute Lyme disease from a single cell

Lyme disease warning

For those who live in an area blighted by ticks, the threat of Lyme disease can cast a shadow over the joy of spring and summer. These blood-sucking arachnids can transmit bacteria into the bloodstream of their unsuspecting host, causing the disease.

Early treatment is essential, but current tests are not usually sensitive enough to detect the disease in early-stage patients. A recent study in open-access journal Frontiers in Microbiology reveals a new test for Lyme disease, which is the first to reliably distinguish between early- and late-stage patients. The test detects a genetic sequence left by a virus that resides in Lyme-causing bacteria, and can detect just one bacterial cell in a small blood sample.

As the most common tick-borne infection, Lyme disease affects nearly 500,000 people in the U.S. every year. Symptoms include fever, fatigue, joint pain, and a distinctive ‘bull’s-eye’ rash, but if left untreated, the disease can cause paralysis and even death. As such, early diagnosis is important, but difficult.

Prompt diagnose of Lyme is essential

“Early diagnosis of Lyme disease is absolutely vital in reducing suffering, because early Lyme can be treated, but late Lyme is very difficult to treat,” explained Dr Jinyu Shan of the University of Leicester, lead author on the study.

“Current tests cannot typically detect the low numbers of bacteria in early-stage patient blood samples. Our goal was to design a highly sensitive test to help doctors to identify Lyme disease as early as possible.”

Shan’s test is based on polymerase chain reaction, or PCR, which works by amplifying small amounts of specific genetic material so that it can be detected. To date, this technique has not been particularly useful in detecting Lyme-causing bacteria in the blood. Such bacteria often lurk in tissues, and may not be present in the blood in large numbers.

Additionally, many of the genetic sequences targeted by PCR have only a single copy within each cell, making it difficult to find and amplify enough for detection.

Shan and his colleagues realized that there is another potential PCR target in Lyme-causing bacteria. These targets are called prophages, and are a genetic sequence that was inserted into the bacteria by a virus.

Fortunately, such genetic material can escape the bacteria and is therefore more likely to be detectable in the blood, and multiple copies are present in individual bacterial cells.

Targeting prophages is key

The researchers assessed their new prophage-targeted test by adding small amounts of Lyme-causing bacteria to blood samples. They found that the test was very sensitive, detecting just one bacterial cell in 0.3 mL of blood. This suggests that the test is sensitive enough for use with human samples, as people infected with Lyme-causing bacteria typically have between 1 and 100 bacterial cells per mL of blood.

Based on these promising results, the researchers used their PCR test to analyze blood samples from healthy volunteers and patients with either early-stage or late-stage Lyme disease.

Strikingly, the test could successfully distinguish healthy, early-stage and late-stage Lyme disease samples, and is the first technology to successfully achieve this.

The technique may also be applicable to diagnostic tests for other bacterial infections, if researchers can identify suitable prophage sequences for such bacteria. The technology will need further development before it is suitable for clinical use, but the researchers have already begun the groundwork for this.

“We are currently working with a commercial partner, and investigating regulatory issues and the potential for a clinical trial for this technology,” said Shan.

Click here to read the journal article.

PRESS RELEASE SOURCE: Frontiers in Microbiology

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For more:  https://madisonarealymesupportgroup.com/2021/03/31/targeting-multicopy-prophage-genes-for-the-increased-detection-of-borrelia-burgdorferi-sensu-lato-the-causative-agents-of-lyme-disease-in-blood/

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Lyme, Testing

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Ulceroglandular Tularemia

https://www.nejm.org/doi/full/10.1056/NEJMicm2031676?query=WB

Ulceroglandular Tularemia

April 8, 2021
N Engl J Med 2021; 384:1349
DOI: 10.1056/NEJMicm2031676

List of authors.

  • Michael Buettcher, M.D.,
  • and Chiara Imbimbo, B.M.

A 5-year-old girl presented to the pediatric emergency department with a 4-week history of painful swelling on both sides of her lower abdomen. Pets that she had regular contact with included a cat and a dog. Six weeks before presentation, her parents had noticed a tick buried in her umbilicus and had removed it with tweezers. Five days later, the patient had fever, loss of appetite, fatigue, and redness around the umbilicus (Panel A). These symptoms abated after 4 days. At the time of this presentation, examination showed marked inguinal lymphadenopathy on both sides (Panel B). Treatment with oral ciprofloxacin was initiated for suspected ulceroglandular tularemia. Serologic testing supported the diagnosis; the Francisella tularensis antibody titer was 1:1280. Two weeks after the completion of treatment, there was a reduction in the lymphadenopathy. After an additional 2 weeks, the swelling had completely resolved.

For more:

According to DHS, tularemia in Wisconsin is rare, with less than one case per year since 1980.  In 2016, a tularemia alert was given for La Crosse due to the death of three infected cats.  And according to this report, while rabbits are the main source of transmission in Wisconsin, aquatic mammals (muskrat, beaver), woodticks, upland game birds: (partridge, pheasant, prairie chicken), cats, squirrels, deer-fly bites, skunks horses, sick dogs which killed rabbits, foxes, possible skunk, mink, muskrat or raccoon are also responsible.  One case was recorded from exposure to a contaminated stream.  It’s been called “Deer-fly Fever.”

Category:

research, Ticks, Tularemia

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PANS, A Misdirected Immune Response, Can Hijack a Child’s Life

https://www.lymedisease.org/brandi-dean-pans-immune/

PANS, a misdirected immune response, can hijack a child’s life

Brandi Dean

Pediatric Acute-onset Neuropsychiatric Syndrome–or PANS–is a misdirected immune response that can result in profound changes in a child’s brain.

It can be caused by different factors, including Lyme disease, and can result in terrifying symptoms. 

By Brandi Dean

This is a difficult post to write and one I have been thinking about for a while now. I have always been very open about my own experience recovering from tick-borne illness. While I am usually a private person, it came easy to open up because my goal was always to help someone else in need of guidance or support.

But this is a harder story to tell because it involves our 10-year-old son, Finn. It is a story that has caused a tremendous amount of pain as a mother. I have watched our beautiful boy’s vibrant and energetic personality literally wither away, just like the muscle tone he developed over several years of playing hockey and soccer.

Before PANS, Finn was known for his sense of humor, his love for fast cars, and his Terriers hockey team. Rides to school and games were often filled with laughter as Finn would put on his British or Australian accent and share stories about searching for wallabies in the outback or eating biscuits in London.

If he wasn’t talking, he was singing. I loved his voice and would turn down the music just enough so that I could hear him sing. And then he knew when it was time to prepare for battle.  Before every hockey game, he would turn on rap music and do planks and sit-ups in the car in anticipation of soon taking the ice.

Then everything changed

Our vibrant, healthy, and energetic child changed overnight. It started gradually with fatigue and weakness in his extremities.  Then one evening he started to scream, “make it stop!”

He held his hands to his head while pacing back and forth screaming over and over again. I tried holding him and he pushed me away while screaming, “I need help! Leave me alone! I need help! LEAVE. ME. ALOOOONE!”

I was terrified as I had no idea what Finn was experiencing and did not know how to help him. Things seemed to escalate every day as the old Finn withered away. His eyes drew sullen and surrounded with dark circles. His beautiful smile was now tight as he nervously chewed his fingernails and refused to go outside.

Very soon after, he gave up hockey and soccer and filled the many hours he used to spend on the practice field or practice ice nestled away in a fort he built in our living room. The few times I tried to get him to attend practice, he screamed in the car while punching the back of my seat. “I hate you. You are so annoying! I HATE YOU! BRING ME HOME Noooooow!”

I was heartbroken and felt helpless as I watched Finn cry himself to sleep while begging for help.

A Diagnosis

In late October, Finn was diagnosed with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). PANS is a clinical diagnosis given to children who have a dramatic-sometimes overnight – onset of neuropsychiatric symptoms triggered by an underlying infection. In Finn’s case, Lyme, Bartonellosis, and Mycoplasma are all infections identified by his doctors as potentially causing PANS and its associated symptoms of obsessive-compulsive disorder (OCD), depression, irritability, and anxiety.

The Heartbreak

I feel very fortunate that Finn was diagnosed quickly and started treatment within days of his diagnosis. I wasn’t prepared for the heartache and depression that followed. I feel lost and alone again. I can’t describe the deep sorrow I feel when I look at photos of Finn, before PANS.

I am mourning the loss of the child he was and I am desperate to get him back. Our rides to school are now quiet as he no longer likes listening to music and no longer chooses to sing along. There are no more pre-game workouts to rap songs before hockey and no more “Cowboy Cellys” after scoring a goal. He is quiet and withdrawn.

On Easter morning, he was triggered after being told to take a shower before we headed out for Easter brunch. His screams fill the house with tension and our bodies stiffen as we prepare ourselves for one of Finn’s many meltdowns.

“I hate this! I just want to be normal again! Everyone hates me! I just want to be normal!”

“You don’t know what this feels like! I hate this! Everyone is mad at me! No one understands what this is like! I just want to be NORMAL!”

Conversations no mother should have

I have had conversations with Finn that no mother should ever have. Every time, I take him into my arms and hope that he is absorbing everything I share with him.

“Finn, I need you to remember something. This is temporary. OK? This is temporary and you WILL get better. And, Finn, you need to give yourself some grace when these moments of rage happen. You know why? Because you are fighting a BIG battle, hon. And, when you have these moments of rage, you need to know that this is not you. It’s your brain. Your brain is on fire. So when you are able to calm down, please don’t be so hard on yourself. There are not too many people that could go through what you are going through right now. You are strong, you are RESILIENT and you are LOVED. Please don’t forget this, Finn. You are so brave and you are not alone. You WILL get better.”

Finn always collapses in my arms in tears while nodding his head to let me know that he’s heard me. He is exhausted and desperate for some sense of normalcy again and we are all learning to cope the best we can.

Moments of grace

It’s been almost six months since his diagnosis with very little improvement. We continue to trudge along and pray fervently for the sun to shine again. We have been blessed with moments of grace that have lifted our spirits and helped get us through the unimaginable. The motivational message from Boston Bruin’s Charlie Coyle gave Finn the strength to keep fighting. The videos from his Terrier’s hockey team showing them chanting Finn’s name “on three” and doing Finn’s signature “Cowboy Celly” after a goal showed Finn how much he’s cared for. His daily game-night chats with classmates have given him something to look forward to.

He knows he has people rooting for him. He knows he has “triggers” from an illness that is preventing him from doing the things he loves. But, he still wakes up every morning, determined to get better so that he can play for his team again. He still has hope and he still has an enormous amount of support from his friends and family. He’s a fighter. He’s brave. He’s #FinnStrong.

Young Finn

Brandi Dean is the founder of the Dean Center for Tick Borne Illness and Ride Out Lyme, Inc. She is also an integrative wellness coach. This blog first appeared on her website.

For more information about PANS:

ASPIRE: The Alliance to Solve PANS and Immune-Related Encephalopathies

New England PANS/PANDAS Association

Northwest PANDAS/PANS Network

PANDAS Network

Moleculera Labs

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Category:

Activism, Bartonella, Lyme, Mycoplasma, PANS

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Lyme Disease: ‘Beating Back Death’

April 9, 2021

https://spindigit.com/2020/08/17/lyme-disease-beating-back-death/

Lyme Disease: Beating Back Death

Sara White

With multiple television and movie projects, 2019 was a busy year for southwest Georgia native Stacy Johnson.

That nearly wasn’t the case for the budding young actress because a chance encounter with a tick 14 years ago nearly ended her career — and life.

“When I saw her in 2017, she couldn’t hardly verbalize, couldn’t concentrate, had dizziness,” said Dr. Jeffrey Lawson, the rheumatologist and founder of Piedmont Arthritis Clinic in Greenville, S.C., who diagnosed and treated Johnson. “She had shooting pain in her extremities.”

Before seeing Lawson, the actress had been to a number of specialists who were unable to identify the cause of her symptoms. Johnson was performing in a sideshow at a circus when her crisis hit.

“Her family owns Barnum & Bailey Circus,” Lawson said. “She had a show in Chicago. She died in McDonald’s. Her heart stopped.”

Johnson was resuscitated and hospitalized, but she was no closer to learning the underlying issue.  (See link for article)

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For more:  https://www.imdb.com/title/tt12919858/?ref_=ttrel_rel_tt

Storyline

“Lyme Disease: Beating Back Death” is a tell-all documentary about a decade’s long battle against Lyme disease. Following the story of Stacy Johnson, a critically acclaimed actress, the documentary, in vivid, personal detail, chronicles the struggles of this horrific disease mentally, physically, and emotionally, and serves as a dire warning to the public.Written by Stacy Johnson

Looks like the release date was Feb, 2021.  Facebook page

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Activism, Lyme

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