What doctors think of the boom in chronic Lyme journalism - Slate

HM Epstein hmepstein at GMAIL.COM
Wed Aug 28 13:42:10 UTC 2019


I think the article reflects how misunderstood and misreported are the true issues surrounding diagnosis and treatment of Lyme Disease. 

My son Brandon was multiply misdiagnosed for over seven years with over 20 diagnoses, most concurrently. He was finally diagnosed in 10th grade with Neuroborreliosis  which is a neurological form of Lyme disease. Although we suspected it for several months (and I had asked them to test him for Lyme every year for eight years), he was finally diagnosed via a brain SPECT scan at New York Presbyterian Hospital. He didn’t have chronic Lyme. He had what’s known as late stage Lyme because he had been untreated for so long. 

Until that day, his medical records indicate that he had been diagnosed with (in alphabetical order) ADD; ADHD; Antibiotic-Responsive (Presumed Post-Infectious) Tic Disorder; Anxiety; Bruxism; Compulsive Thoughts (unrelated to Obsessions); Depression; Dysgraphia; Graphomotor Skills Disorder; Growing Pains; Insomnia; Magical Thinking; Narcolepsy; Nocturia; Obsessive Thoughts (unrelated to Compulsions); OCD (Obsessive Compulsive Disorder); Organizational Skills Deficits; Overt Obstructive Apnea; PANDAS[i]; Sleep Disordered Breathing; Tourette’s Syndrome; and UARS (upper airway resistance syndrome). 

He also had the following medically unexplained symptoms (MUS) that were recorded by the doctors but never included in any official diagnosis: Growth Disorder (failure to grow), Memory Loss; Sudden Full-Body Rashes; PRIM (Purposeless Rapid Involuntary Movements); Relapsing-Remitting Low-grade Fevers. Several doctors said that dreaded, disturbing phrase, “It’s all in his head.” 

It was in his head. More specifically it was in his brain and CNS.

He had started to have bizarre symptoms in fourth grade, including all body spasms that looked like he had been plugged into an electric outlet. By the time he was diagnosed, he had missed months of 10th grade, bedridden, in full body pain, unable to sleep at night or stay awake in the day, complete short-term memory loss, and apathy. He literally stopped growing for several years. His body was under such virulent attack, his bones and teeth just stopped developing so his body could focus on battling the infections. 

Brandon's multiyear diagnostic journey was caused by testing error and the type of political BS about Lyme Disease that this article exemplifies. Despite living in an endemic area with herds of deer in our backyards, schoolyards, and parks, few of our top specialists understood how to test or treat for Lyme Disease. 

Hence the rise of LLMDs (Lyme Literate MDs) who focused on treating patients with suspected tick-borne infections. Yes, there are quacks who self identify as LLMDs, just as there are quacks who practice in other specialties. But the physicians who saved my son's life were graduates of top medical schools: Columbia, Yale, Harvard, and NYU. They were board-certified internal medicine specialists, pediatricians, psychiatrists, and FDA investigators who saw a new plague and sought to help their patients, despite resistance from the leadership of the IDSA; much like the early practitioners who worked with HIV positive patients in the late eighties and early 90s. Now those HIV doctors are lauded, not called quacks. Yet the controversies swirling around Lyme Disease persist.

Yes, Chronic Lyme exists due to several factors: persistent infection that has not been fully eradicated by the antibiotic treatment, co-infections, and autoimmunity. It is perhaps poorly named since it often involves difficult-to-eradicate co-infections now that ticks in most states contain multiple bacterial diseases in their bodies. Many of these co-infections don't have accurate tests available. The CDC lists an additional 15 diseases transmitted by ticks who carry Lyme Disease. 

Brandon’s infection — like many with chronic Lyme — probably involved the development of Biofilms, one way that bacterial infections become resistant to antibiotics. It's not just a Lyme Disease issue. Antibiotic resistance due to biofilms is a serious issue. 

Since Brandon was undiagnosed/misdiagnosed for so long, experts also posited that the spirochetal infection was now in his DNA and his cells had become a Lyme spirochetal factory, spinning off copies to reinfect him. If that’s true, if the spirochetes can drill into the DNA core to survive and replicate, that may be another cause of chronic Lyme symptoms. 

Tick-borne diseases also create autoimmune conditions, which Brandon's test results indicated. Any of those four things, co-infections, biofilms, cell replication, and autoimmunity, can explain chronic Lyme Disease. 

My son's story has a happy ending. Once proper antibiotic therapy began, Brandon went back to high school, aced the NY State Regents, grew quite a few inches that summer, and eventually graduated from Johns Hopkins. He did relapse in college but recovered after treatment. He fell in love with a premed student who just started her pediatric residency and they are getting married next year.

Best,
Helene

[i] PANDAS stands for Pediatric Auto-Immune Neuropsychiatric Disorder Associated with Strep Infection.

       
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On Aug 28, 2019, at 12:29 AM, David L Meyers <dm0015 at comcast.net> wrote:

Not exactly a valid survey sample in his article, but the symptoms and diagnosis are challenging.

https://slate.com/technology/2019/08/what-doctors-think-of-the-boom-in-chronic-lyme-journalism.html






David

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