Archive for the ‘Lyme’ Category

A Child Can No Longer Walk. Before COVID, There Was Lyme Disease Denial

https://rescue.substack.com/p/a-child-can-no-longer-walk-before

A Child Can No Longer Walk. Before Covid, There Was Lyme Disease Denial.

Lyme disease left her paralyzed at 11. Now 19, the girl blessed by the Pope is suing doctors who refused to treat.

MARY BETH PFEIFFER
APR 29, 2023
Julia Bruzzese, now 19, whose Lyme disease went undiagnosed and untreated for nearly two years, causing paraplegia at age 11. A medical malpractice lawsuit has been filed in New York City on her behalf.

This is a story of medical ignorance: How an infection was allowed to fester even when safe, generic drugs could have stopped it.

No, this is not about covid-19. This is a story of Lyme disease.

Before a pandemic came along, Lyme disease was among the most controversial and, in late stages, abysmally treated infection in medicine.

As covid wanes, the tick-borne illness is still all those things. That is why a nineteen-year-old woman, who represents chronic Lyme sufferers worldwide, is suing a dozen doctors, a pediatric practice, and three hospitals in New York City for medical malpractice.

If anybody can change the image and practice of Lyme disease, it is Julia Rose Bruzzese of Brooklyn, the girl in a wheelchair who met the Pope on an airport tarmac at the age of twelve in hope of a miracle. Maybe, just maybe, she will get it.

First, her odyssey.  (See link for article)

SUMMARY:

  • Julia had a glaring EM rash the doctors simply ignored.
  • This error of ignorance was repeated over two more years and she was accused of making it all up.
  • When her dad suggested it might be tick-borne illness he was treated like he was using profanity.
  • Julia’s lawsuit contends that the continued refusal of doctors and hospitals resulted in her life in a wheelchair and she is seeking judgement and financial damages that would be fair, adequate and just.
  • Her father has fought battles for Julia before when attempting a medical insurance appeal.
  • Author of the article, Mary Beth Pfeiffer, has interviewed scores of others with similar stories of Lyme ruin and denial.
  • Due to this medical controversy another group of doctors has formed the International Lyme and Associated Diseases Society (ILADS) which faults the IDSA for using low-quality and flawed evidence behind their entire paradigm.
    • This group still insists upon using a 30 year old diagnostic test that is wrong some 40% of the time with early infection and anywhere from 70–86% in late infection.  Yet this test is followed like the Rosetta Stone.
    • This group also recommends longer prophylactic antibiotics after tick bites and initial infection, and retreatment for persisting symptoms.  Due to this approach, Julia finally felt her feet for the first time in months.
  • Julia experienced extremely abusive situations by doctors throughout this journey including gas-lighting, taking away her wheelchair to see if she would get up to use the bathroom, poking prods into her lifeless legs when she slept, waking up to a large group of doctors looking down on her to observe a supposed case of “conversion disorder,” being dragged along a hospital hallway, and taking all her weight but then dropping her despite her cries of pain.
  • The family has had financial troubles due to this.
  • Julia has faced frightening litany of symptoms that have progressed and worsened over time due to lack of treatment. She has had GBS, POTS, distended bladder, cognitive impairment, vision and hearing difficulties, insomnia, atrophy, migratory joint pain, encephalitis, seizures, severe fatigue, osteopenia, and many other problems.
  • The defendants have denied all claims in the lawsuit, filed in March 2021.
  • Julia made global news when she sought a blessing from the Pope in 2015.
  • Finally able to obtain testing, she now had evidence of 5 infections: Lyme, Babesia, Tularemia, and Bartonella and received treatment which helped but did not cure her long-ignored condition.
  • Julia’s story is now chronicled in a critically acclaimed documentary that is now screening around the country.
  • The ignorance being experienced is largely to a one-size-fits-all medical model which is a huge ongoing problem.
  • While Julia’s lawsuit is a year or more from trial, another trial is coming in May for a “wrongful death” in a young man who had a negative test but ended up dying from Lyme carditis.  A case report in Cardiovascular Pathology journal two years later documented the damage to his heart. There, in color, were corkscrew-shaped Borrelia burgdorferi spirochetes, the causative agent of Lyme disease. Similarly to Julia, he was not treated with a round of antibiotics that likely would have spared him.  Journal articles continue to minimize the severity of tick-borne illness by insisting that they are self-limiting conditions.  Therefore, doctors are lazy and apathetic toward a complex illness that has and will kill or maim a good number of patients.
  • A false narrative also continues to insist that people are over diagnosed with Lyme due to supposed false positive tests.
  • Despite stories like this (and thousands more) nothing has changed in Lymeland. 
  • What’s the answer?  Good question.  Pfeiffer thinks maybe big money payouts will help our plight. Recently a Maine lawsuit awarded a family 6.5 million from a hospital and doctor in the Lyme carditis death of a twenty-five-year-old man in 2017.
    • The lawyer who won the case is the same lawyer in Julia’s case as well as in the other Lyme carditis death.  He has yet to earn a dime.  How many lawyers will fight for sick Lyme patients without a living wage?  Food for thought.
  • Like all good dads, Julia’s father is worried for her future, but Julia’s greatest weapon continues to be her optimism.  She is in pre-med, paints, crochets, bakes, and is a make-up artist.

Category:

Activism, Babesia, Bartonella, Lyme, Tularemia

Case Report: Lyme Disease Causes Inflammation of the Spinal Cord

https://danielcameronmd.com/lyme-disease-inflammation-spinal-cord/

CASE REPORT: LYME DISEASE CAUSES INFLAMMATION OF THE SPINAL CORD

lyme-disease-spinal-cord
There have only been 8 documented pediatric cases of Lyme disease causing transverse myelitis. In this report, the authors describe the ninth case involving a 10-year-old boy.
By 

In their article “Case report: Subacute transverse myelitis with gait preservation secondary to Lyme disease and a review of the literature,” Colot and colleagues describe a 10-year-old boy who suffered from neck pain with irradiation in the upper limbs for 13 days.

Transverse myelitis (TM) is an inflammation of both sides of one section of the spinal cord. Diagnosis requires clinical symptoms and evidence of inflammation within the spinal cord via cerebrospinal fluid analysis and/or magnetic resonance imaging.

Treatment of transverse myelitis typically includes oral steroids, intravenous immunoglobulins, plasma exchange, and immunomodulatory therapies.

“Clinical features consist of sensory disturbances in most patients, followed by weakness and sphincter dysfunction. Children suffer from more severe clinical impairment than adults,” the authors wrote.

In fact, one study found 89% of the pediatric patients were bed- or wheelchair-bound or required assisted ventilation.

In this case report, Colot et al. provides evidence that the clinical presentation of neuroborrelial transverse myelitis differs from classical TM.

“TM secondary to Lyme disease is more often subacute with gait preservation and is limited to the cervical spine,” the authors wrote.

Lyme disease triggers inflammation in spinal cord

A 10-year-old boy presented to his pediatrician with “persistent nocturnal and rotational neck pain with irradiation in the upper limbs for 13 days with a feeling of heaviness and paresthesia in the fingers.”

The boy also had a fever for 11 days, along with fatigue and headaches.

MRI findings of the spine suggested longitudinal extensive transverse myelitis (LETM).

“A spinal MRI showed an extensive T2 hypersignal between C1 and C7, with a normal T1 signal confirming the diagnosis of LETM.”

An extensive workup was performed using blood serologies and autoimmune factors. A CSF analysis found an increased white blood cell count in cerebrospinal fluid.

“The patient was treated with high-dose methylprednisolone IV for 5 days and Ceftriaxone IV,” the authors wrote. After 48 hours, the boy’s symptoms decreased, his CSF bacterial culture was negative and Ceftriaxone was stopped.

He remained on steroids but 2 days later, his neck pain and laterocollis (head tilted to one side) reappeared.

“Our case illustrates that neuroborrelial TM should be treated with long-term [antibiotic] therapy and that steroids do not seem to improve the prognosis.”

Since the patient lived in a tick-endemic area, he was tested for Lyme disease.

“The test results of Borrelia IgG in the blood and intrathecal IgG synthesis were positive, confirming the diagnosis of TM secondary to Lyme disease,” the authors explained.

“The patient reported that he had an erythematous spot in the neck a few months back, which was suggestive of an erythema migrans, but he did not remember that he had suffered from a tick bite,” the authors explained.

After 23 days of treatment with Ceftriaxone and Doxycycline, the patient made a complete recovery.

Authors Conclude:

“After an extensive review of the pediatric literature, we wish to emphasize five aspects of TM secondary to Lyme disease:”

  1. presentation is more often subacute
  2. lesions are mainly located in the cervical spine
  3. gait is usually preserved
  4. sphincter dysfunction is unusual
  5. recovery is usually complete after prolonged antibiotic therapy

The authors suggest: “[Transverse myelitis] in a subacute presentation, gait preservation, a discrepancy between the severe mainly cervical imaging manifestations and the minimal clinical signs and symptoms, and the absence of sphincter dysfunction should raise suspicion of TM secondary to Lyme disease.”

References:
  1. Colot C, Adler C, Mignon C, De Leucio A, Jissendi P, Fonteyne J, Aeby A. Case report: Subacute transverse myelitis with gait preservation secondary to Lyme disease and a review of the literature. Front Pediatr. 2023 Mar 16;11:1064234. doi: 10.3389/fped.2023.1064234. PMID: 37009275; PMCID: PMC10061057.

_______________

**Comment**

This patient, like all others presented in the literature, needs extensive follow-up, which never happens in mainstream medicine and/or research.  My hunch is this poor kid will have symptoms later on that will never be connected to this event.  I pray I’m wrong.

Further, nothing is mentioned about coinfections, which are the norm not the exception.

Category:

Lyme, Pain Management, research, Transmission, Treatment

May 3, 2023 Tick Boot Camp Podcast: Eva Sapi, PhD

https://tickbootcamp.com/eva-sapi-geneticist-and-molecular-biologist-at-university-of-new-haven/

April 1, 2023

Eva Sapi, Geneticist And Molecular Biologist At University Of New Haven

Eva Sapi

Tick Boot Camp Podcast
Dr. Michael Snyder was featured on the Tick Boot Camp Podcast:

Launching May 3…

Background
Professor Eva Sapi is a Hungarian-American microbiologist and researcher who has dedicated her career to advancing our understanding of Lyme disease.

Early Life and Career
Born in Hungary, Sapi comes from a family of engineers and scientists. She studied biology at a university in Hungary from 1987 to 1995 and earned her Ph.D. in biology from the same university. She went on to complete postdoctoral work in Germany and Switzerland, where she focused on studying gene regulation in bacteria, and understanding how genes are turned on and off in response to environmental cues.

Early Research
Professor Sapi started her research career studying breast cancer until she was hit with chronic Lyme disease and it paused her life. After finally getting a proper Lyme diagnosis and spending years trying many different pharmaceutical and herbal treatments, Sapi began to feel better and started collecting and studying ticks. She discovered that ticks carry Bartonella and that ticks could carry many different species of bugs that can infect humans, which was not received well by the medical community at the time.

Official Lyme Career Pivot
Next, Professor Eva Sapi joined the University of New Haven in Connecticut as an Associate Professor in the Department of Biology and Environmental Science. She was also appointed as the Director of the Lyme Disease Research Group at the university, where she continued her research on Lyme disease and other tick-borne illnesses.

Popular Work
Sapi is known for her groundbreaking research on the persistence and treatment of Lyme disease. She was the first to discover that Borrelia burgdorferi can form biofilms that protect it from antibiotics and the immune system. Her current research, with James Goldman, a Columbia University professor of pathology and cell biology, centers on a case in which a woman received 16 years of antibiotic therapy and still died from Lyme disease. Their findings – published in Healthcare 2018 – supported her earlier discoveries that Borrelia can form biofilm, a protective layer around itself, making it extremely resistant to antibiotics.

Notable Achievements
Professor Sapi has authored 70 peer-reviewed scientific papers on Lyme disease and trained more than 100 graduate students in Lyme disease research. She is a sought-after speaker and presenter and has appeared on radio and television programs. Her groundbreaking research has earned her several recognitions, including the research trailblazer award from LymeDisease.org in 2018, and the Courage Award from Lyme Connection of Ridgefield. Her ultimate goal is to identify novel antibacterial agents that are effective in killing all forms of Borrelia.

Recent Breakthroughs
Sapi’s research has also shown that some herbal remedies, such as Stevia, can be effective in treating Lyme disease. Her recent breakthrough, with her students, is in the potential of liquid, whole-leaf Stevia extract in reducing biofilm mass. In a recent study, they found that liquid, whole-leaf Stevia extract is an effective treatment for Lyme biofilm. This finding is significant because Borrelia biofilm is a protective layer around itself, making it extremely resistant to antibiotics.

Lyme and Cancer
Sapi’s research has also found evidence that Borrelia may be present in breast cancer tissues, as well as ovarian and endometrial cancer. She and her students are focusing on Borrelia, examining more than 400 invasive breast cancer tissues. A significant number of samples were positive for Borrelia, suggesting that the bacteria may play a role in breast cancer development and metastasis.

Looking Ahead
Professor Eva Sapi’s work on breast cancer and its link to Lyme disease has opened new avenues for research and has the potential to lead to novel discoveries in the field. The scientific community and the Lyme disease community are fortunate to have such a dedicated and passionate researcher leading the charge in advancing Lyme disease research, including its role in cancer.

Listen on Apple Podcasts, Spotify, or Google Podcasts

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Category:

Activism, Bartonella, Cancer, Lyme, research, Ticks

Growing Connection Between Infections & Cancer

http://

Growing Evidence Between Infections & Cancer Part 1

Dr. Armin Schwarzbach, July 2022

AONM

There is significant research to suggest that infections contribute to the forming of, or even cause, cancers. In this first, of a two-part webinar series, Dr. Schwarzbach will present evidence that will substantiate this claim. The potential behind such findings is huge for patients worldwide regarding not only unrealised and future therapeutic interventions, but also the prevention of cancers.

http://

Growing Evidence Between Infections & Cancer Part 2

Dr. Armin Schwarzbach

AONM

There is significant research to suggest that infections contribute to the forming of, or even cause, cancers. In this second of his two-part webinar Dr. Schwarzbach presents evidence that will substantiate this claim. The potential behind such findings is huge for patients worldwide regarding not only unrealised and future therapeutic interventions, but also the prevention of cancers.

For more:

Category:

Activism, Cancer, Lyme

Study: SOT Potential Treatment For Viruses & Lyme Disease

https://pubmed.ncbi.nlm.nih.gov/36412742/

Supportive Oligonucleotide Therapy (SOT) as a Potential Treatment for Viral Infections and Lyme Disease: Preliminary Results

Panagiotis Apostolou 1, Aggelos Iliopoulos 1, Georgios Beis 1, Ioannis Papasotiriou 2

Free PMC article

Abstract

Antisense therapy is widely used as an alternative therapeutic option for various diseases. RNA interference might be effective in infections, through the degradation of messenger RNA and, therefore, translation process. Hence, proteins essential for microorganisms and viruses’ proliferation and metabolism are inhibited, leading to their elimination. The present study aimed to evaluate the use of oligonucleotide in patients infected by Epstein-Barr (EBV) or Herpes Simplex Viruses 1/2 or with Lyme Disease caused by Borrelia burgdorferi. Blood samples were collected from 115 patients and the different species were characterized using molecular biology techniques. Then, SOT molecules (Supportive Oligonucleotide Therapy), which are specific small interfering RNA (siRNA), were designed, produced, and evaluated, for each specific strain. Oligonucleotides were administered intravenously to patients and then a quantitative Polymerase Chain Reaction was used to evaluate the effectiveness of SOT. This study revealed that for Lyme Disease, one or two SOT administrations can lead to a statistically significant decrease in DNA copies, while for viruses, two or three administrations are required to achieve a statistically significant reduction in the genetic material. These preliminary results indicate that antisense SOT therapy can be considered a potential treatment for viral as well as Lyme diseases.

For more:

The challenge with Lyme is correctly identifying the patient’s infections as they are typically coinfected with many. Further, it’s all based on using PCR to detect the DNA of various bacteria which is known to find Lyme only 30% of the time.  Further, many of the organisms with Lyme/MSIDS aren’t found in the blood so trying to detect it there is futile (another reason this is so hard to test, diagnose, and treat.)

Using genetic code for a treatment for this is like trying to catch a greased pig.  Lyme in particular changes its outer surface protein which means what goes into you isn’t what comes out of you as the organism mutates to survive.  Yet another reason it’s difficult treating this and why there has never and will never be a Lyme vaccine worth its weight in salt.  You can’t pin something down that changes.

Personally, all this work on treatments using genetics scares the bajeebers out of me.  Hopefully the past three years have caused all of us to pause and consider the implications of using genes and their ability to alter genetic code.  Also, what works in a petri dish often doesn’t work in reality.

Of course, at the end of the day, we are all big boys and girls and have to make our own decisions.  What works for one often doesn’t work for another and if you do your reading, are convinced of its merits, and want to try this, then by all means do it.  If you have success, or if you don’t, please let me know.  Often the best way we move forward is by educating one another on various treatments and health changes.

Category:

Lyme, research, Testing, Treatment, Viruses