Archive for the ‘Uncategorized’ Category

Harvard Medical School Lyme Disease Survey

https://hms.az1.qualtrics.com/jfe/form/SV_eKeMMApsqAnfuPY  Survey Here

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TAKE OUR LYME DISEASE PATIENT EXPERIENCE SURVEY! 

The Lyme Disease Education Initiative at Harvard Medical School would like to hear your Lyme disease story. Survey participants will answer questions about their experience with Lyme disease and about the types of information that could help others with Lyme disease to navigate their illness and improve their quality of life. We will use the survey results to help shape educational materials for Lyme disease patients and the general public.

If you are an adult living in the US who has been diagnosed with Lyme disease by a medical professional, you may be able to help. Answer the screening questions below to see if you qualify.

Category:

Activism, Lyme, Uncategorized

The Impatient Patient

https://www.globallymealliance.org/blog/the-impatient-patient

The Impatient Patient

by Jennifer Crystal on April 12, 2021

<img style="box-sizing:inherit;max-width:100%;height:auto;" src="https://www.globallymealliance.org/hubfs/Imported_Blog_Media/MyLymeLife_2-87-3.png&quot; alt="The Impatient Patient“>

by Jennifer Crystal

When would I get better? Why was I not seeing improvement every day?

Recently a friend’s toddler son asked her for a snack. Holding his baby sister, my friend told her son he’d need to wait a minute. He looked at her squarely and asked, “Does anyone like to wait?” Kids have a way of telling it like it is. The truth is, no one is great at patience, especially when we’re hungry, tired, or anticipating a big event. Perhaps the hardest time to wait is when we’re sick. “Patients” are ironically named because when we’re stuck in bed waiting to feel better, waiting for medication to work, waiting to live, we become very impatient.

I was impatient even before I got sick. A high-achieving lifestyle and the pressures that come with it always made me feel like I needed to hurry up and reach the next goal. If I didn’t, I might miss an important opportunity. I felt that if something didn’t happen right away, it might never happen at all. Then I got sick with chronic active Epstein-Barr virus, Lyme disease, babesiosis, ehrlichiosis, and possible Bartonella and all that forward motion and achievement came to a grinding halt. I was bedridden, hooked up to an IV, with nothing to do but wait. When would I get better? Why was I not seeing improvement every day?

Unfortunately, it often takes a long time for late-stage tick-borne illnesses to develop (for me, it took eight years to get an accurate diagnosis), which means it can take a long time to get better. Due to Herxheimer’s reactions, trial and error periods to figure out each person’s individual protocol, and setbacks from factors that are both in and out of our control, recovering from tick-borne illness is not a linear process. It can be especially hard to be patient when you feel like you’re taking two steps forward and one step back, or even one step forward and two steps back. Whether you’re three or ninety-three, no one likes to be slowed down.

When days, months, and even years of our lives are lost to illness, we feel increased urgency. We’re afraid that we’re losing precious time, as I discussed in my post “ A Lymie’s View from 39”. Illness-induced FOMO—fear of missing out—naturally manifests as impatience. A natural response to this impatience is to push our bodies to do more than they can so that we don’t miss out entirely. The minute I started to feel a little bit better, I’d go out and spend that energy. And while I enjoyed whatever I did, I paid for it with a flare of symptoms that sent me back to bed for days.

Not waiting caused damage, just as if my friend had not asked her son to wait, she might have dropped the baby or spilled the snack. She told him to wait because she had everyone’s well-being in mind. In just a few minutes, her son got his snack, and no one was hurt in the process. Patience paid off. Still, waiting—especially when it involves resting—goes against everything society has taught us about leading productive, meaningful lives. Though work-life balance has become more valued, busyness and achievement are still seen as badges of honor.

What bothered me most as an impatient patient was that I wasn’t doing anything. A friend who’d spent years recuperating from a traumatic brain injury helped reframe my thinking by telling me, “Your body is working really hard to heal right now. In order to let it do its job, you need to rest.” This realization helped me be more patient and loving with my sick body, more willing to give it what it needed—rather than fight against it—so that I could achieve my long-term goal of health.

Now that I have achieved and retained remission, I still can be impatient; it’s simply my nature. But I have learned to slow down; to pace myself; to trust my doctors, medications, and body; and most of all, to trust the process. I can’t get back the years I lost to illness. But I’m enjoying the ones I have now—which I wouldn’t have gotten if I’d pushed through the sicker years—and it truly does feel like the life I was meant to live is unfolding in its own time. I have to trust that it will continue to do so, as long as I am patient.

For more blogs, click here

Writer

Jennifer Crystal

Writer

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

Category:

Babesia, Bartonella, Ehrlichiosis, Lyme, Psychological Aspects, Uncategorized, Viruses

Prevalence of Infection by Bartonella spp. in Patients With Psoriasis

https://www.sciencedirect.com/science/article/pii/S0365059620303093

Prevalence of infection by Bartonella spp. in patients with psoriasis

Under a Creative Commons license
open access
Dear Editor,

Psoriasis (Ps) is a chronic multisystem inflammatory disease that, in addition to the genetic factor, has other triggers such as emotional stress, nutritional deficit, endocrine problems, and infections. The activation of immune system cells is considered an important factor in the pathogenesis of Ps, and several infectious agents have been related to this activation. To modulate the immune response in patients with Ps, the systemic treatment of the disease may be based on immunosuppressive drugs, which facilitates the spread of opportunistic infections.1

Bacteria of the genus Bartonella are fastidious Gram-negative cocobacilli distributed worldwide (Fig. 1). Currently, the genus has 45 species and subspecies, of which at least 17 are capable of infecting humans. Most of these bacteria are transmitted by hematophagous arthropods, and some of their reservoirs are domestic animals, mainly dogs and cats. Although they have been neglected, the number of studies on Bartonella spp. is increasing, as well as the recognition of their importance. These agents have been linked to a wide spectrum of clinical manifestations, ranging from asymptomatic infection to life-threatening conditions, such as endocarditis.2

Figure 1

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Figure 1. Transmission electronmicroscopy photomicrograph of a colony of Bartonella henselae (ATCC 49793) after 45 days of growth on blood-enriched agar: cocoid and electrondense bacteria with a tri-laminar wall, 50,000×.

There are no diagnostic tests with sufficiently high sensitivity and specificity. In addition, bartonellosis is not included in the diagnostic hypotheses by most physicians, which contributes to the underdiagnosis of these infections.2 This study aimed to assess the prevalence of Bartonella spp. infection through molecular and microbiological tests in Ps patients and a control group of volunteers.

The project was approved by the Institutional Research Council of the Universidade Estadual de Campinas (University of Campinas), under protocol CAAE: 48057415.5.0000.5404.

Blood samples were obtained from 30 Ps patients over 18 years of age, with mild to severe manifestations in different therapeutic regimens who agreed to participate in the study, as well as 30 volunteers – Unicamp students or employees over 18 years of age who denied clinical symptoms, were not pregnant, and agreed to participate in the study.

The samples were processed as summarized in Fig. 2. Liquid enrichment cultures and solid cultures were performed as previously described.3 From whole blood and culture samples, DNA was extracted using the QIAmp DNA Mini Kit (Qiagen®).

Figure 2

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Figure 2. Flowchart of the procedures performed.

From the obtained DNA, genus-specific conventional PCRs (ITS region) and Bartonella henselae-specific PCRs were performed: double amplified PCR (nested) for the ftsZ region and real-time PCR for the gltA region. The quality of the extracted DNA and the absence of amplification inhibitors were tested using conventional PCR for the GAPDH gene.

B. henselae DNA was detected in 20% (6/30) of Ps patients and in 10% (3/30) of healthy volunteers who denied symptoms at the time of blood sample collection (Table 1). Using Fisher’s exact test, no statistical difference was observed between the two groups (p = 0.23).

Ps is a multifactorial, inflammatory, and immune-mediated disease. Although there is no consensus on the exact mechanisms of action in its pathogenesis, there is strong evidence that external factors, such as super antigens, have a great capacity to stimulate the inflammatory response of the disease.1 Microorganisms have been associated with Ps (including β-hemolytic streptococci, Staphylococcus aureus, Porphyromonas gingivalis, Candida albicans, Chlamydia psittaci, human immunodeficiency virus, and hepatitis C virus), but there is limited evidence that antimicrobial therapy has any direct benefit in crisis prevention. Ps is independently associated with a higher risk of serious infections, which is increased by the use of immunomodulatory treatments.1

Infection by Bartonella spp. was documented in 3.2% of 500 blood donors using a single conventional genus-specific PCR, from samples of liquid and solid culture.4

Bartonella spp. was detected in patients with Ps and psoriatic arthritis (PsA). One patient with Ps presented with cat-scratch disease during treatment with adalimumab, and another patient with PsA presented mesenteric lymphadenopathy and splenic abscesses. Symptomatic infection by Bartonella spp. was detected in other patients who were receiving treatment with immunobiologicals.5

One in five patients with Ps and one in ten healthy volunteers presented infection by B. henselae. Despite the lack of statistical difference when compared with the control group, this information is important when considering the high prevalence of infection in patients with Ps and even in the control group. Attention is needed for any patient who requires immunobiological treatment or other immunosuppressive drugs and who presents with possible expressions of infection by Bartonella spp., such as fever of undetermined origin, cryptogenic hepatitis, lymph node enlargement, endocarditis, sepsis, and graunlomatous or angioproliferative reactions. Further studies are needed to assess whether infection by Bartonella spp. may worsen Ps expression and the risks of this infection associated with immunosuppressive treatments.

Category:

Uncategorized

2020 Report to Congress By the Tick-borne Disease Working Group

https://www.hhs.gov/sites/default/files/tbdwg-2020-report_to-ongress-final.pdf  Report Here

Contributions:

  • U.S. Department of Health and Human Services
  • James J. Berger, MS, MT(ASCP), SBB
  • B. Kaye Hayes, MPA

Working Group Members

  • David Hughes Walker, MD (Co-Chair)
  • Leigh Ann Soltysiak, MS (Co-Chair)
  • Charles Benjamin (Ben) Beard, PhD
  • Scott Palmer Commins, BS, MD, PhD
  • Angel M. Davey, PhD
  • Dennis M. Dixon, PhD
  • Sam T. Donta, MD
  • Adalbeto Perez de Leon, DVM, MS, PhD
  • Kevin R. Macaluso, PhD
  • Eugene David Shapiro, MD
  • Patricia Smith, BA
  • Leith Jason States, MD, MPH
  • CAPT Scott J. Cooper, MMSc, PA-C
  • CDR Todd Myers, PhD, HCLD (ABB), MB (ASCP)

Executive Summary p. 1

Chapter 1:Background p. 4

Chapter 2: Methods of the Working Group p. 10

Chapter 3: Tick Biology, Ecology, and Control p. 14

Chapter 4: Clinical Manifestations, Diagnosis, and Diagnostics p. 28

Chapter 5: Causes, Pathogenesis, and Pathophysiology p. 44

Chapter 6: Treatment p. 51

Chapter 7: Clinician and Public Education, Patient Access to Care p. 59

Chapter 8: Epidemiology and Surveillance p. 84

Chapter 9: Federal Inventory p. 93

Chapter 10: Public Input p. 98

Chapter 11: Looking Forward Conclusion p. 103

Conclusion p. 112

For additional information, visit www.hhs.gov/ash/advisory-committees/tickbornedisease/index.html

_______________________
 
For more articles on the TBDWG:  https://madisonarealymesupportgroup.com/?s=TBDWG
 
Nothing has changed in Lyme-land.  
The Cabal wins again.

Category:

Uncategorized

Pandas & Lyme in a 7-Year Old

https://danielcameronmd.com/pandas-and-lyme-disease-in-a-7-year-old-child/

PANDAS AND LYME DISEASE IN A 7-YEAR-OLD CHILD

PANDAS-Lyme-disease

Hello, and welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. In this podcast, I will be discussing the case of a 7-year-old child who was initially diagnosed with PANDAS and later, Lyme disease.

By

The article by Cross et al. entitled “Case Report: PANDAS and Persistent Lyme disease with Neuropsychiatric Symptoms: Treatment, Resolution and Recovery” was published in Frontiers in Psychiatry. [1]

The 7-year-old girl developed multiple physical and neuropsychiatric symptoms six months after travelling to a tick endemic region of the U.S. During this period, she was treated for 3 separate strep infections and was subsequently diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). PANDAS was considered based on classic symptoms and a history of strep, a positive ASO titer and a slightly elevated DNase B titer.

However, despite treatment, the patient’s symptoms continued to worsen. Additional testing revealed that she was also positive by CDC’s criteria for Lyme disease. The Lyme EIA and western blot IgM were positive (with 2 of 3 bands). The western blot IgG was positive for 3 of 10 bands at the IGeneX lab. Her B. henselae IgG was positive at Quest labs. Her IgG Mycoplasma and IgG Babesia duncani antibodies were positive at IGeneX.

Dr. Charles Ray Jones, co-author and treating physician, describes the patient’s broad range of symptoms.

Neuropsychiatric symptoms

On her first visit, “the patient presented with crying, anxiety, headache, joint pain, decreased cognitive functioning, fatigue, nighttime awakening and an extreme fear of sleeping alone.”

The patient’s symptoms were extensive, Jones explains, and included:

• Obsessions, compulsions
• ADHD-like behavior
• Decline in school work
• Separation anxiety
• Panic attacks
• Muscle and joint pain
• Mood lability
• Aggressive behavior
• Fatigue
• Headaches
• Difficulty sleeping
• Word selection problems
• Cognitive decline
• Irrational fears (would not sleep alone)

Functional decline 

The young girl was considered a gifted child and excelled in academics. But cognitive symptoms emerged. She reportedly told her mother, “Mom, something happened to my brain.”

“The patient regressed from being a year ahead of her class in math, to being unable to add beyond the number 10. She began having trouble comprehending more difficult reading,” the authors explain.

“During a ride home with her mother, the patient asked, ‘Who are you? What’s your name again?’ And ‘I know you are mommy but what’s your name?’”

Lyme disease, PANDAS and PANS

PANDAS may be diagnosed when a strep infection triggers multiple neurologic and psychiatric symptoms. PANS or Pediatric Acute-Onset Neuropsychiatric Syndrome, on the other hand, may be triggered by other bacterial, viral or fungal infections. Researchers believe that Borrelia burgdorferi, the bacteria that causes Lyme disease can trigger PANS in some patients.

Lyme disease, PANS and PANDAS can present with similar symptoms. Dr. Bransfield, a psychiatrist who specializes in tick-borne diseases, describes a broad range of neuropsychiatric symptoms that he has seen in his Lyme disease patients. [2]

These include: behaviors associated with developmental disorders or autism spectrum disorder, schizoaffective disorders, bipolar disorder, depression, anxiety disorders (panic disorder, social anxiety disorder, generalized anxiety disorder, posttraumatic stress disorder, intrusive symptoms), eating disorder, decreased libido, sleep disorder, addiction, opioid addiction, cognitive impairments, dementia, seizure disorders, suicide, violence, anhedonia, depersonalization, dissociative episodes, derealization and other impairments.”

Treatment

According to the authors, the child was treated with multiple courses of oral and IV antibiotics including: intravenous ceftriaxone, Omnicef 300 mg BID, Zithromax 250 mg BID, 500 mg BID and Tindamax 250 mg QD (Saturdays and Sundays only), Bactrim and Mepron. Despite this, her symptoms continued and the Cunningham Panel™ of tests was ordered.

Cunningham Panel™ and IVIG

“The Cunningham Panel was ordered to assess the presence of antineuronal antibodies against specific neuronal receptors,” the authors write. “If the Cunningham Panel is positive or strongly positive, that would be an indication that one has an autoimmune problem that needs to be treated with IVIG, as well as antibiotics,” explains Jones.

READ MORE: Highlights from the case report

Panel results indicated the patient had elevated levels for 3 out of 4 autoantibodies: Dopamine D1 Receptor (DRD1), Dopamine D2L Receptor (DRD2L), and Tubulin (TUB).

“Based upon the patient’s Cunningham Panel tests results, the decision was made to prescribe IVIG,” the authors write.

“Over a span of 31 consecutive months of treatment with various antimicrobials and 3 courses of IVIG she experienced complete remission and remains symptom free at the time of this publication.”

Outcome

“Currently this patient appears to be fully recovered and has been discharged from the care of the pediatric Lyme disease specialist. She is asymptomatic and performing academically at the “top” of her class according to her mother,” the authors write.

According to Jones, “multiple concomitant infections may be involved and require treatment to effectively resolve symptoms. Improvement in neuropsychiatric symptoms does not typically occur unless all co-infections are addressed and resolved.”

This podcast addresses the following questions:

  1. What is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS)?
  2. What are the typical symptoms of PANDAS?
  3. What are the similarities between Lyme disease, PANS and PANDAS?
  4. Why was Lyme disease and other tick-borne illnesses considered?
  5. Why was the name Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) introduced?
  6. What is the Cunningham Panel™ of tests and why was it ordered?
  7. What tests did the girl have that supported the diagnosis of a tick-borne illness?
  8. Can you discuss the range of symptoms this patient experienced?
  9. Can you discuss the girl’s treatment for PANS?
  10. Can you discuss the girl’s treatment for Lyme disease, Bartonella, and Babesia duncani?
    Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website @DanielCameronMD.com. As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.

Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Case Report: PANDAS and Persistent Lyme Disease With Neuropsychiatric Symptoms: Treatment, Resolution, and Recovery. Cross A., Bouboulis D., Shimasaki C., Jones C.R. Front. Psychiatry, 02 February 2021
  2. Bransfield RC. Suicide and Lyme and associated diseases. Neuropsychiatr Dis Treat. 2017;13:1575-1587. Published 2017 Jun 16. doi:10.2147/NDT.S136137.

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Category:

Lyme, PANS, research, Uncategorized