Madison Area Lyme Support Group

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)

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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 70 – 86% 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.”