Archive for the ‘research’ Category

Advocates Call on IDSA to Retract False Information on Congenital Lyme

https://www.lymedisease.org/advocates-call-for-idsa-retraction/

Advocates call on IDSA to retract false information on congenital Lyme

Nov. 9, 2021

Mothers Against Lyme, a group of advocates concerned about the impact of Lyme disease and its co-infections on pregnant women, children and families, is calling for retraction of a statement in the Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), American College of Rheumatology (ACR) 2020 Clinical Practice Guidelines for the Prevention, Diagnosis and Treatment of Lyme Disease that contributes to misdiagnosis and harm to pregnant women and children who are congenitally infected.

On October 20, Mothers Against Lyme sent a retraction request letter to the editors of the journals that published the guidelines and the leadership of the sponsoring organizations. Copies were sent to the clinical practice guidelines committees of the sponsoring organizations and the co-authors of the guidelines. The guidelines were published in Clinical Infectious Diseases, Neurology, Arthritis Care & Research, and Arthritis & Rheumatology.

Page e12 of the guidelines “Treatment of Lyme Disease” section states:

“To date, Lyme disease in pregnancy has not been found to result in congenital infection or a syndrome of congenital abnormalities, and no additional treatment or monitoring of the mother or infant is recommended beyond the standard of care.”

According to the letter, the statement “To date, Lyme disease in pregnancy has not been found to result in congenital infection” is not true.

40 peer-reviewed articles

The letter cites more than 40 peer-reviewed articles, including a systematic review co-authored by a CDC epidemiologist, that provide evidence of congenital infection with Lyme disease.

The letter also cites studies and review articles that show adverse birth outcomes are common for both treated and untreated pregnant women with Lyme disease.

Adverse outcomes include fetal death, newborn death, and newborns with an abnormal outcome (e.g. birth defects, hyperbilirubinemia, respiratory distress).

According to Mothers Against Lyme Chair Isabel Rose:

“Correction of this error is vital and warrants an expedited review and notice of correction. The potential harm to mothers, children, and families from the inaccurate information in the IDSA, AAN, ACR Guidelines is significant. Providers who rely on the guidelines will fail to diagnose and treat Lyme disease in pregnancy and fail to recognize the offspring of women with Lyme disease as infants and children at risk. Countless tragic births and fetal losses will result, with a lifetime of harm to the children and their families.”

Authors contradict their own work

The letter also cites eight articles co-authored by IDSA, AAN, ACR Guidelines authors that “clearly contradict what they’ve written in the guidelines, and which address the issue of intrauterine transmission and fetal abnormalities head-on.”

Following are examples.

“It is clear that B. burgdorferi can be transmitted in the blood of infected pregnant women across the placenta into the fetus. This has now been documented with resultant congenital infections and fetal demise.”

“The precise risk to the developing fetus of maternal Lyme disease during pregnancy is unknown, although it is well documented that fetal infection can occur and may have deleterious outcomes, including malformations and death.”

“The aim of treatment of early Lyme disease during pregnancy is not only to treat the infection and prevent long-term sequelae but to eliminate the infection as quickly as possible so as to prevent congenital transmission to the fetus.”

Ignoring their own research

According to Rose:

“It is disheartening and alarming that the authors of medical guidelines that direct the care of pregnant women with Lyme disease are ignoring their own research to put forward guidelines based on ‘expert opinion’ rather than their own discoveries. Their own work conclusively proves that perinatal transmission of B. burgdorferi during pregnancy does occur and may have dire consequences for the pregnant mother and her fetus.”

The IDSA, AAN, ACR Guidelines say that “no additional treatment or monitoring of the mother or infant is recommended beyond the standard of care.”

Instead of denying the existence of congenital Lyme, the letter says “the Guidelines should acknowledge that Lyme bacteria can cross the placenta, both infecting and causing harm to unborn children, and describe the manifestations of Lyme in pregnancy that the research has uncovered and advise screening and treatment according to the knowledge we have to date.”

Research funding

Rose points out that researchers who depend on the IDSA, AAN, ACR Guidelines for information will be less likely to submit grant applications for much needed research if they rely on the statement that congenital Lyme disease does not exist.

She notes that this is especially important since more than $29 million in new annual funding for NIH has been appropriated that could support this type of research. NIH has also issued several notices of special interest to encourage research on Lyme and other tick-borne diseases. A recent notice includes a section that calls for research on “gestational Lyme disease” and the impact on pregnancy on immune response.

Rose says, “Correcting this error does not undo the harm. In addition to making this correction in a timely manner, the sponsoring organizations should encourage their members to conduct research on congenital Lyme that will improve health outcomes for pregnant women with Lyme disease and children who are congenitally infected.”

About Mothers Against Lyme

We’re a group of mothers and mother-advocates who are concerned about the impact of Lyme disease and its co-infections on pregnant women, children and families. Our focus includes awareness, education, advocacy and community building, as we promote research that advances diagnosis, treatment and prevention.

SOURCE OF PRESS RELEASE: Mothers Against Lyme

Related posts:

  1. Advocate asks IDSA to remove false statement about Lyme transmission
  2. IDSA removes inaccurate Lyme document from website
  3. TOUCHED BY LYME: CDC allows “possibility” of mother-fetus Lyme transmission
  4. IDSA lists complaints against TBD Working Group; advocates push back

Category:

Activism, Lyme, research, Transmission

Bell’s Palsy From Lyme Misdiagnosed, Patient Bedridden Due to Myth That it is ‘Rare’

https://danielcameronmd.com/bells-palsy-lyme-disease-misdiagnosed/

Bell’s palsy due to Lyme disease misdiagnosed, patient bedridden

Woman in hospital bed with Bell's palsy due to Lyme disease.
In their study “Bilateral Facial Nerve Palsy in a Young Woman From West Bengal: Do Not Forget Lyme Neuroborreliosis,” Kayal and colleagues describe the case of a 23-year-old woman, living in India, who was misdiagnosed with bilateral facial nerve palsy. [1]
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Until recently, India has been considered a non-endemic region for Lyme disease, the authors point out. And, “Although it had been considered extremely rare in India, a recent study conducted in Nagarahole and Bandipur in South India surprisingly revealed a high seroprevalence (19.9%) of Borrelia burgdorferi infection in a population at risk (forest workers and staff).”

According to the case report, the young woman was admitted to the hospital with “rapidly evolving progressive weakness of all four limbs, and lancinating pain over the back of the neck and lower back, radiating to upper and lower limbs.”¹

Her symptoms had developed over a 1-week period and left the patient bedridden. Ten days prior, she had developed a fever, which resolved within 2 days.

Two months before the onset of symptoms (during the last months of her pregnancy), she developed a “slight deviation of her angle of the mouth toward the left side, along with grossly decreased taste sensation and difficulties in closing eyes, blowing, and whistling.” This lasted for one month.

She was diagnosed with right-sided Bell’s palsy but Lyme disease was not considered, initially.

The woman was treated with methylcobalamine and prednisolone. However, her symptoms did not improve.

Further testing revealed the patient was positive for Lyme disease by ELISA and PCR.

She was treated with intravenous ceftriaxone (2 g/day) and oral azithromycin (500 mg/day) for 14 days.

Three months after her discharge from the hospital, the woman was able to walk without assistance. And, at the 6-month follow-up visit, she had “no demonstrable neurological deficit.”

Currently, only 10 cases of Lyme disease have been reported in India. Four of these cases involved lower motor neuron–type facial paresis.

In this case, the patient “also had an asymmetric lower motor neuron–type bilateral facial paresis, which was misdiagnosed by her treating physicians as right-sided Bell’s palsy leading to a delay in diagnosis.”

Interestingly, the authors point out, none of these patients exhibited an erythema migrans (bull’s-eye) rash.

The authors’ suggest:

“The possibility of Lyme neuroborreliosis should be considered more often from now on because in the last year four cases with the kindred clinical syndrome have been described from a so-called “non-endemic zone.”

Related Articles:

Treatment varies for Bell’s palsy in children with Lyme disease

Patient with facial palsy from Lyme disease fails treatment

Can Bell’s palsy lead to nonflaccid facial palsy in Lyme disease?

References:
  1. Kayal N, Ghosh R, Mazumdar PS, Das S, Ghosh S, Pandit A, Benito-Leon J. Bilateral Facial Nerve Palsy in a Young Woman From West Bengal: Do Not Forget Lyme Neuroborreliosis. Neurol India 2021;69:997-1001

Category:

Lyme, research

Does Lyme Carditis Differ in Children vs. Adults?

https://danielcameronmd.com/lyme-carditis-children-vs-adults/

Does Lyme carditis differ in children vs. adults?

lyme carditis in child being examined by doctor
In their article, “Lyme Carditis in Hospitalized Children and Adults, a Case Series,” Shen and colleagues compare, for the first time, the presentation, management, and outcomes of Lyme carditis in the pediatric versus adult populations.
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The authors analyzed charts of pediatric and adult patients with heart block and a positive Western Blot test for Lyme disease, who were hospitalized at Maine Medical Center. The study included 10 children and 20 adults who were admitted for Lyme carditis between January 2010 and December 2018.¹ The children’s mean age was 12.4 years. The adult mean age was 41.4 years.

The case series found:

  • 90% of the Lyme carditis patients were male, with 87% having no prior cardiac history.
  • All cases presented between June and October.
  • Of the 13 cases who noted symptom onset, 76% presented within 3 weeks of illness.
  • Out of 30 patients, 17 were evaluated at an outpatient facility. “Of these, a minority (41%) had Lyme disease suspected in the outpatient setting, and fewer (12%) were initiated on Lyme disease treatment.”

“Improved early recognition and treatment of Lyme disease may decrease Lyme carditis.”

  • Children with Lyme carditis were more likely to present with disseminated erythema migrans and fever. Otherwise, children and adults had similar symptom presentations, exhibiting predominantly presyncope and syncope.
  • “There was no statistical difference between pediatric and adult cases with regards to heart block type or other cardiac complications,” the authors write. “However, the most common heart block in pediatric cases was first-degree (40%) vs second-degree Mobitz type 2 in adult cases (55%).”
  • Adults were more likely to require a pacemaker (60%) compared with 20% of children. “Proportionately more adults needed temporary pacing,” the authors write, while “Children had shorter antibiotic durations…”

“… there is room for improving outpatient diagnosis and treatment of early Lyme disease, even in a high-incidence state like Maine.”

  • Out of the 30 cases, 27 had improved heart block, while 3 adults required a pacemaker at discharge. One patient died.

The authors point out that the majority of these cases were evaluated by an outpatient provider before carditis developed. However, only 41% of the patients were diagnosed with or suspected to have Lyme disease at that visit.

Furthermore, even fewer (12%) of those patients received appropriate antibiotics.

“Overall, there were no major differences seen between the presentations or outcomes of pediatric and adult Lyme carditis cases,” the authors write.

“Earlier diagnosis and treatment would likely have prevented carditis and the need for hospital admission,” the authors conclude.

“… there is room for improving outpatient diagnosis and treatment of early Lyme disease, even in a high-incidence state like Maine.”

Related Articles:

Lyme carditis diagnosis: 18 cases

Patients can die when Lyme carditis is not treated

Study identifies 189 children with Lyme carditis

References:
  1. Richard V Shen, Carol A McCarthy, Robert P Smith, Lyme Carditis in Hospitalized Children and Adults, a Case Series, Open Forum Infectious Diseases, Volume 8, Issue 7, July 2021, ofab140, https://doi.org/10.1093/ofid/ofab140

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For more:

Category:

Heart Issues, Lyme, research

Clinical Presentation of Lyme Disease in Patients Living in Germany – Same Story, Different Country

https://danielcameronmd.com/presentation-lyme-disease-patients-germany/

Clinical presentation of Lyme disease in patients living in Germany

Lyme disease presentation in man from Germany holding his hands over his face.
In their article, entitled “Neuropsychiatric and Psychological Symptoms in Patients with Lyme Disease: A Study of 252 Patients,” Hündersen and colleagues describe the clinical presentation, diagnostic process and treatment regimens for 252 Lyme disease patients. [1]
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The authors collected data via an online questionnaire from 252 Lyme disease patients and a control group of 267 healthy individuals living in Germany to examine the clinical presentation, including neuropsychiatric and psychological symptoms.

The findings revealed that “Lyme disease can cause diverse psychological and neuropsychiatric symptoms. These include limitations in quality of life, sleep, attention, and memory, as well as depressive symptoms.”

Time to diagnosis

The majority of the patients were diagnosed with Lyme disease based on ELISA (53.2%), Western blot (43.7%), and lymphocyte transformation test results (41.7%).

Out of the 252 participants, nearly half (45.5%) recalled an erythema migrans rash, while 74% recalled a tick bite “that possibly triggered Lyme disease.”

It took approximately 8 years to receive a diagnosis following the tick bite.

On average, patients visited almost 8 physicians to obtain a diagnosis.

It took approximately 8 years to receive a diagnosis following the tick bite.  Less than half (46%) received their diagnosis within the first 5 years after the onset of symptoms.

Co-infections

The majority of participants were not diagnosed with or tested for a co-infections.

“A total of 25% of the sample stated that they had (exactly one) co-infection,” the authors explain, while 15% reported having 2 co-infections.

“For patients that suffered from co-infections, Chlamydia infection was particularly common (34.9%), as was the Epstein–Barr virus (34.9%).”

Treatment

Out of the 252 participants, 168 received antibiotic treatment that lasted at least 3 weeks.

Symptoms improved for nearly 73% of these patients.

93% of participants reported a relapse of symptoms after the completion of antibiotic therapy.

“The type of treatment was oral in most cases (47.6%), or a combination of oral and intravenous therapy (48.8%),” according to the authors.

Intravenous antibiotic therapy was prescribed in only 3.6% of the cases.

Authors Conclude:

  • “It became clear that Lyme disease is often diagnosed very late.”
  • “It appears that people suffering from Lyme disease have significantly lower quality of life and sleep and show cognitive impairments when it comes to attention and memory.”
  • “This study shows that 3.1% of Lyme patients were satisfied with their lives and that 37% scored in the lower third of the quality-of-life scale.”
  • “It was also shown that Lyme patients tend to have depressive symptoms.”
References:
  1. Hündersen F, Forst S, Kasten E. Neuropsychiatric and Psychological Symptoms in Patients with Lyme Disease: A Study of 252 Patients. Healthcare (Basel). 2021 Jun 14;9(6):733. doi: 10.3390/healthcare9060733. PMID: 34198647; PMCID: PMC8232147.

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**Comment**

This article, right here, encapsulates dire issues that have remain untouched for over 40 years.

  • Abysmal testing is still relied upon for diagnosis
  • Having the EM rash and remembering a tick bite happen far less than we are being told
  • People are still diagnosed and treated late, even though everyone and their dog knows this is a problem
  • Eight years is a long time to suffer, allowing pathogens to travel everywhere in the human body causing untold damage
  • Three weeks of antibiotics is a complete JOKE and is laughable if the consequences weren’t so dire
  • Most were not tested for coinfections.  Since testing for coinfections is just as abysmal as for Lyme – these patients saved a lot of money.  The minus, of course, is not understanding that cases with coinfection involvement are far more difficult to treat and require far more medications for a longer period of time. Lyme literate doctors understand this fact and will diagnose and treat clinically (based upon symptoms – not tests alone)
  • The fact their symptoms improved in 3 weeks doesn’t mean they should end treatment.  In fact, for those with a brain, it indicates antibiotic treatment works and should be continued until they don’t work, and then, they should be changed, not stopped as coinfections often need addressing and require different meds
  • 93% relapsing should prove to the deniers once and for all that the measly 21 days of doxycycline clearly isn’t working. 
  • 93% relapsing should also put to rest the myth that only 10-2-% go onto suffer persistent symptoms. When you count those who were diagnosed and treated late, as these patients were, it is an astounding 60% that go on to suffer debilitating symptoms.
  • The life-altering, debilitating symptoms these poor people suffer with show that this 40-year old experiment must end.  This is barbarism on a scale similar to the Tuskagee experiment

Category:

Activism, Lyme, research, Treatment

TMJ Arthritis Triggered by Lyme Disease

https://danielcameronmd.com/tmj-arthritis-triggered-by-lyme-disease/

TMJ arthritis triggered by Lyme disease

woman with TMJ from Lyme disease holding her jaw

A case report by Weise and colleagues demonstrates that Lyme disease can induce temporomandibular joint (TMJ) pain and may be misdiagnosed as a common temporomandibular disorder (TMD).

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In the article, “Acute arthritis of the right temporomandibular joint due to Lyme disease: a case report and literature review,” the authors describe a 25-year-old patient who presented to a medical center with acute pain in the right temporomandibular joint and mouth opening disorders.¹

Over a 5-year period, the woman’s distal bite was treated with removable and fixed orthodontic appliances. Three months after the first symptoms, “the patient developed increasing pain in the right TMJ, increasing active mouth opening restriction to 20 mm and a habitual deviation of the lower jaw to the left.”

The patient was initially diagnosed with a total ventral deviation of the discus on the right side without reduction. Treatment with anti-inflammatory medications, a bite splint and a corticosteroid injection, however, were not effective and the woman’s symptoms continued.

Although the patient did not recall a tick bite or EM rash, testing for Lyme disease was positive and she was diagnosed with Lyme arthritis affecting the right temporomandibular joint.

“Early interdisciplinary diagnosis of Lyme disease and early antibiotic therapy are essential to avoid misdiagnosis and unnecessary, sometimes invasive, therapies.”

The patient was prescribed a 3-week course of Cefuroxime. After one week of antibiotic treatment, her symptoms improved.

“It can be assumed that there must have been an infection with Borrelia in the right temporomandibular joint for a longer period of time before the symptoms occurred.”

Lyme disease presenting with TMJ “very often is misinterpreted as a temporomandibular disorder,” the authors state.

“In the case of unclear TMJ problems and when the TMD treatment is not successful,” the authors stress, “the possibility of a [Lyme disease] infection should definitely be considered as a differential diagnosis.”

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**Comment**

This condition is extremely painful.  I’ve had it.

A Lyme disease infection should definitely be considered as a differential diagnosis when ANY joint becomes painful and inflamed, particularly when there’s a fever present.

For more:

Category:

Inflammation, Lyme, Pain Management, research