Archive for the ‘research’ Category

Unraveling the Mystery of Lyme Disease

Unraveling the mystery of Lyme disease

Research shows the oft-misdiagnosed tick-borne disease can lead to serious mental health problems that can erode a person’s quality of life, especially if left untreated. Psychologists are among those working to improve care for these patients.
tick on a leaf

Long before the SARS-CoV-2 virus was linked to a syndrome we now call long COVID, researchers and clinicians were already debating over how to best assist patients experiencing lingering symptoms from Lyme disease. For reasons that are unclear, 10% to 20% of people who contract Lyme disease report ongoing or intermittent symptoms at least a year after completing antibiotic treatment, including fatigue, muscle aches, difficulties with memory, irritability, and other symptoms, according to a review of the research (Marques, A., Infectious Disease Clinics of North America, Vol. 22, No. 2, 2008).

For patients, these ongoing and sometimes debilitating symptoms can erode their quality of life, potentially leading to depression, anxiety, and other mental health issues. But over the past few decades, researchers have also determined that the tick-borne infection itself, along with related inflammatory and other physiological effects, may directly cause mental health disorders.

One recent study, conducted by researchers from the Columbia University Irving Medical Center and the Copenhagen Research Centre for Mental Health, found that patients who received a hospital diagnosis of Lyme disease had a 28% higher rate of mental disorders and were twice as likely to have attempted suicide post infection than individuals without a Lyme diagnosis (Fallon, B. A., The American Journal of Psychiatry, Vol. 178, No. 10, 2021).

Patients diagnosed with Lyme report a range of mental health-related symptoms. Some experience panic attacks for the first time, which can sometimes extend for hours at a stretch, said Sheila M. Statlender, PhD, a clinical psychologist in Newton, Massachusetts, who has been working with patients with Lyme disease for more than 15 years. Some report frustrations with “brain fog,” cognitive difficulties that can include impaired concentration or trouble with tracking words on a page. In rarer instances, they develop auditory hallucinations. “They hear music, or they hear a radio that’s not playing,” she said.

(See link for article)


A few points:

  • The article falsely regurgitates that only 10-20% experience lingering symptoms when this only includes those diagnosed and treated early.  A far larger group of 30-40% are diagnosed and treated late.  By combining the two groups, a whopping 60% suffer lingering symptoms.  Numbers matter.
  • The article falsely regurgitates that at least 70% of adults and children will develop some type of skin irritation around the bite including the EM rash when this is highly variable and in the first patient group was only 25%.  While having the rash is diagnostic for Lyme (no testing required – start treatment asap) not having the rash means nothing.  You can still be infected without a rash.
  • Dr. Fallon states that antibody blood testing is required for those with late stage Lyme to help “clarify” the diagnosis. The testing he speaks of misses 7086% of cases.  That is hardly clarifying.  Lyme/MSIDS has been and always will be a “clinical diagnosis” that demands proper understanding and education of tick-borne diseases, something that is sorely lacking in medical training.
  • The article points out one of the problems with CDC testing – if it’s done too soon, antibodies may not have had time to develop.  Taking a “wait and see” approach (waiting for testing or waiting for symptoms, or both) has doomed patients to a life-time of suffering.
  • The CDC’s statement that “most people recover after treatment” is complete and utter propaganda. They are so hopelessly lost in their own corruption and hubris they wouldn’t know facts if they were hit squarely in the face with them.
  • Please note one of the doctors got involved treating Lyme patients due to having to go through the gauntlet with her three children becoming ill with tick-borne illness (TBI).  This is a common refrain.  Our best doctors and researchers have “been there, done that.”
  • Further complicating things are misdiagnoses, such as in Lorraine Johnson’s case where she was misdiagnosed with psychiatric illness and was put on psychotropic drugs, which didn’t work.  She lost 5 years of her life essentially due to doctor bias.  Please note that the “proof is in the pudding” because when she was properly treated for Lyme her symptoms cleared – including psychiatric illness. But mainstream medicine/research only sniffs at case studies with clinical outcomes like Johnson’s.
  • One of the psychologists in the article recommends they should refer any patient they are concerned about to a physician for testing to rule out Lyme but there are three problems with this advice: 1) testing sucks 2) other organisms besides Lyme are at play and a test only can pick out what it is designed to look for 3) mainstream medicine is is the Dark Ages regarding all things TBI.  The only true help will come from an ILADS-trained doctor who understands that TBI diagnosis is a clinical diagnosis.  Testing is essentially futile.
  • The point made about a potential “red flag” when a patient’s symptoms change while they are taking antibiotics for another medical reason, such as treating an infection, is an important, crucial point that mainstream medicine has denied for far too long.
  • Some excellent psychiatric observations are made and I highly recommend reading the article for these nuances that show some differences between ordinary mental health issues and those caused by Lyme/MSIDS. (Lyme/MSIDS tends to cause intense, prolonged, nonstop, very high anxiety without any underlying triggers and gives the patient sensitivities to light, sound, touch, and smell. I would add food and environmental issues as well.)  This explains my husband to a T.
  • I’m thankful for the Lyme researcher’s advice to psychologists on the importance of reading up on Lyme controversies since patients struggle with abuse from doctors, family, and co-workers and often suffer from isolation, depression, and demoralization on top of the effects of the infections.
  • This researcher teamed up with psychologists who treat Lyme and came up with a screening tool
    • They also discovered that cognitive behavior therapy’s (CBT) homework-intensive approach overwhelms these patients due to their brain fog, fatigue, and cognitive issues
    • CBT’s identifying and changing dysfunctional and distorted thought processes also doesn’t work as well on these patients as many of their thoughts are not distorted (they truly lost their job, they are really sick, they can’t do the things they used to do, they actually are isolated, etc.)
    • Acceptance and commitment therapy (ACT); however, which relies less on restructuring one’s thought patterns and more on adapting to current reality, has helped these patients.  The patient still identifies and notices thoughts but they focus more on learning to coexist with or accept those thoughts.

Important quote:

“There is no question, it is a very, very challenging population to work with,” Trunzo said. “It also can be very rewarding. You can have an immeasurably profound impact on someone’s life by doing this work. Because you may very well be the only person who is listening to them.”

Well said.

Unilateral Knee Swelling in a Child Due to Lyme Disease

Unilateral knee swelling in a child due to Lyme disease


In their case report, “Pediatric unilateral knee swelling: a case report of a complicated differential diagnosis and often overlooked cause,” Guardado et al. describe a 3-year-old girl who presented to a hospital in Pennsylvania after two weeks of limping from a swollen right knee.¹

According to the authors, “The mother initially denied history of a tick bite, yet after focused questioning, the mother stated that the child had ticks on her approximately 9 months ago.

Unfortunately, the child was not taken to her clinician because she did not develop any skin rashes which could indicate Lyme disease.

The child demonstrated right knee effusion with signs of crepitus and decreased range of motion secondary to swelling, the authors explain. “In addition, she had an unsteady gait without joint tenderness, crepitus, or overlying skin pathology.”

A Western blot test for Lyme disease was positive.

“Lyme arthritis is a diagnosis that is often missed, even in children, who are the population with the highest incidence of Lyme disease,” the authors point out.

“When this diagnosis is missed, it can result in long-term morbidity, which is generally refractory to intravenous antibiotic therapy, oftentimes requiring synovectomy.”

The child had a complete resolution of symptoms following a 2-day treatment with IV Rocephin and 21 days of oral amoxicillin.

“This case demonstrates the importance of including Lyme arthritis as part of the differential diagnosis of joint swelling regardless of the recollection of a tick bite,” the authors suggest.

Furthermore, the case raises awareness of mono- or oligoarticular arthritis as one of the signs of Lyme disease.

Related Articles:

Efficacy of Short-Term High Dose Pulsed Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) & Associated Coinfections: A Report of 3 Cases & Literature Review

Efficacy of Short-Term High Dose Pulsed Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) and Associated Co-infections: A Report of Three Cases and Literature Review


Lyme disease and associated co-infections are increasing worldwide and approximately 20% of individuals develop chronic Lyme disease (CLD)/Post-Treatment Lyme Disease Syndrome (PTLDS) despite early antibiotics.
A 7–8-week protocol of double dose dapsone combination therapy (DDDCT) for CLD/PTLDS results in symptom remission in approximately 50% of patients for one year or longer, with published culture studies indicating higher doses of dapsone demonstrate efficacy against resistant biofilm forms of Borrelia burgdorferi. The purpose of this study was therefore to evaluate higher doses of dapsone in the treatment of resistant CLD/PTLDS and associated co-infections. Twenty-five patients with a history of Lyme and associated co-infections, most of whom had ongoing symptoms despite several courses of DDDCT, took one or more courses of high dose pulsed dapsone combination therapy (200 mg dapsone X 3-4 days and/or 200 mg BID x 4 days), depending on persistent symptoms.
The majority of patients noticed sustained improvement in 8 major Lyme symptoms, including:
  • fatigue
  • pain
  • headaches
  • neuropathy
  • insomnia
  • cognition
  • sweating

where dapsone dosage, not just treatment length, positively affected outcomes. High dose pulsed dapsone combination therapy may represent a novel therapeutic approach for the treatment of resistant CLD/PTLDS, and should be confirmed in randomized, controlled clinical trials.


For more:

Please remember that the often touted 20% of individuals who go on to suffer symptoms despite early treatment only include those who are diagnosed and treated early and omit a much larger subset of patients like myself, my husband, and nearly every patient I work with who are diagnosed and treated later.  For more on this, please see:

Important excerpt:

10-20% of Lyme disease patients who are promptly diagnosed and treated with an antibiotic within the first few weeks of infection, still end up with chronic disease. This is PTLDS.

30-40% of Lyme disease patients who have been infected for weeks to months before getting diagnosed, and THEN treated with an antibiotic, still end up with a chronic disease. This subgroup has no specific label but it has been referred to as “chronic Lyme disease,” or CLD.

60% of Lyme patients end up with chronic symptoms

And this, of course, doesn’t even take coinfections into consideration.

Powassan Virus Found in Massachusetts Ticks  News Story Here (Approx. 3 Min)

Updated: Jun. 10, 2022 at 4:00 PM CDT

AMHERST, MA (WGGB/WSHM) – A western Massachusetts tick testing company has found several ticks have tested positive for the Powassan virus, not long after a Connecticut woman in her 90s died of the tick-borne virus.

Scientists at Tick Report in Amherst are busy testing around 1,000 ticks a week, taking a close look under the microscope, and extracting DNA.

“June is going to be the worst month of the year for deer ticks, really the riskiest tick bite that you can get,” said Paul Killinger, education director at Tick Report.

(See link for news story)
I just found a juvenile black legged tick on my towel, on my deck approx. 6 feet away from trees but separated by much and rocks.
One minute, no tick, and the next minute there it was.
I believe the tick blew from the nearby trees onto the deck, even though most researchers deny ticks dropping from trees, even though birds transport ticks everywhere, including trees where they may drop off.
This TV anchor got infected this way, and a Lyme advocate told me that ticks blow into their pool from nearby trees regularly.
For more:

Powassan is NOT rare:

For the last two years, Coppe Laboratories has dedicated a significant amount of time and resources to dispelling the myth that infection with Powassan virus, a virus transmitted by tick bite, is rare. The Centers for Disease Prevention and Control (CDC) reports only 100 cases of Powassan virus infection in the United States in the last 10 years. Indeed, that statistic gives the illusion that Powassan infection is rare. However, did you know that the only infections reported to CDC are those that are life-threatening, particularly cases causing severe inflammation of the brain like the case reported in LiveScienceCoppe has published three new papers in the last year that clearly show Powassan virus infection is not rare are at all, and until testing for this virus is included as part of tick-borne disease screening panels infections will continue to be underreported. Coppe’s Powassan Guide, which can be downloaded from the website, summarizes the findings from both tick and human Powassan prevalence studies, as well as defining the patient populations that would benefit most from Powassan testing.

Optic Neuritis Associated With Lyme Disease

Optic neuritis associated with Lyme disease


In their article, “Characteristics of Lyme optic neuritis: a case report of Lyme associated bilateral optic neuritis and systematic review of the literature,” Lu et al. present a rare case of isolated bilateral optic neuritis in a Lyme disease patient. [1] (Optic neuritis is an inflammation of the eye’s optic nerve.)

The case features a 48-year-old female with multiple sclerosis (MS) who presented to her primary care physician with a fever and sore throat.

Three weeks later, she returned complaining of photophobia, eye pressure sensation, blurry vision, pain with eye movements and central scotoma on the morning prior to her visit. (A scotoma is a blurry or blind spot in your visual field while the surrounding areas appear normal.)

An “MRI along with fundus exam confirmed the diagnosis of bilateral optic neuritis,” the authors write.

Two months prior to her visit, the woman had removed a tick from her leg but did not report any rashes.

Testing for Lyme disease was positive by Western blot.

The woman was hospitalized and treated with intravenous methylprednisolone (1g/day for 3 days) due to the degree of swelling, along with ceftriaxone (2 g/day for 25 days) for Lyme disease.

The “patient returned for follow up 1 week post hospitalization, reported visual symptoms abated and she was back to her previous baseline,” the authors write.

“Clinicians working in the endemic areas should consider Lyme borreliosis in patients presents with bilateral optic nerve head swelling, and painless progressive visual loss.”

In reviewing the literature, Lu and colleagues found 11 patient cases of optic neuritis and Lyme disease.

“In this review, we collected cases that have demonstrated strong evidence of causal relationship of Lyme borreliosis and optic neuritis in attempt to characterize the nature and clinical presentations of optic neuritis involved in Lyme borreliosis…,” the authors write.

The most common symptoms related to optic neuritis included blurry vision (11 cases), headache (7 cases), scotoma (3 cases) and painful ocular movement (3 cases).

“Additionally, there were 4 reported neurological symptoms – paresthesia (3 cases) and ataxia (1 case); 3 reported arthralgia; and 3 reported nonspecifc symptoms – fatigue, weakness, and myalgia,” the authors write.

Only 2 of the 11 patients reported having an erythema migrans (Bull’s-eye) rash, while the majority did not recall having a tick bite.

Moderate vision loss was reported in 8 of the patients.

According to the authors, “The patients all responded well with combination of corticosteroid and antibiotic therapy, or antibiotic therapy alone.”

As the authors point out, typically optic neuritis presents with acute, painful, and unilateral visual loss. However, in these Lyme disease patients, it presented with “bilateral optic nerve head swellings, and painless, moderate (better than 20/200) and progressive visual loss.”