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

Tom Benzoni benzonit at GMAIL.COM
Fri Aug 30 15:15:26 UTC 2019


Permission to point to the elephant in the room?
This topic can be a case study in search satisfaction bias.

Tom Benzoni


On Fri, Aug 30, 2019, 07:59 Diane O'Leary <doleary8 at uwo.ca> wrote:

> Much of the trouble with accurate diagnosis of chronic and late-stage Lyme
> is vagueness in standards for psychosomatic diagnosis or MUS. The new draft
> guideline from IDSA, for example, has a whole section that handles chronic
> Lyme as MUS without support or explanation.  This example encourages
> physicians to do the same in practice.
>
> I’ve submitted comments about this problem during the open comment period
> for the draft guideline. It’s still possible to read the draft and submit -
> until Sept 9, I think.
>
> Best -
> Diane
>
> Get Outlook for iOS <https://aka.ms/o0ukef>
>
> ------------------------------
> *From:* HM Epstein <hmepstein at gmail.com>
> *Sent:* Thursday, August 29, 2019 2:56 PM
> *To:* improvedx at list.improvediagnosis.org
> *Subject:* Re: [IMPROVEDX] What doctors think of the boom in chronic Lyme
> journalism - Slate
>
> I concur. Years after my son was diagnosed and treated, I met Jason at the
> 2015 DEM conference. I ran his symptoms through the Isabel checker and Lyme
> disease came up in the top five. I don’t know if that would’ve happened 10
> years earlier.
>
> Jason, how do you handle controversial diagnostic criteria? For example
> the IDSA and the ILADS organizations both have official diagnostic criteria
> registered and they differ.
>
> Best,
> Helene
>
> On Aug 29, 2019, at 1:11 PM, Jason Maude <jason.maude at isabelhealthcare.com>
> wrote:
>
> As you may expect, I believe that SIDM members should encourage the more
> routine use of symptom checkers for patients and DDx Generators for
> clinicians.
>
>
>
> Specific disease awareness programmes are great but, if very successful,
> can start to work in reverse as people think of the disease more often than
> appropriate. The advantage of symptom checkers and DDx tools is that they
> are objective and remind the patient or clinician to think of a disease *when
> appropriate* rather than because they recently saw a programme on the
> subject.
>
>
>
> Regards
>
> Jason
>
>
>
>
>
> Jason Maude
>
> Founder and CEO Isabel Healthcare
> Tel: +44 1428 644886
> Tel: +1 703 879 1890
> www.isabelhealthcare.com
>
>
>
>
>
> *From: *HM Epstein <hmepstein at GMAIL.COM>
> *Reply to: *Society to Improve Diagnosis in Medicine <
> IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>, HM Epstein <hmepstein at GMAIL.COM>
> *Date: *Thursday, 29 August 2019 at 15:54
> *To: *"IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG" <
> IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>
> *Subject: *Re: [IMPROVEDX] What doctors think of the boom in chronic Lyme
> journalism - Slate
>
>
>
> Rob, are you asking how the listserv can do it or how SIDM can?
>
>
>
> SIDM has patient partners, like Lorraine Johnson the head of
> Lymedisease.org, who helped us craft a curriculum for patients who wish
> to participate on panels for clinical trials, clinical studies, PFACs, and
> agencies like AHRQ and CDC.
>
>
>
> I think our participation in improving diagnosis of LD ends there for now.
> Patient run and physician run organizations who focus on Lyme disease
> issues are already working hard on education and training. In fact, I wish
> we had patients as devoted as Lyme patients are. The Lyme Disease
> Association (a different organization) has a medical conference coming up
> in September and they’re promoting a program for patients called *Educate
> Your Doctors, Publicize the Lyme Conference! *
>
>
>
> Yes, Lyme disease is significantly under diagnosed; the CDC estimates only
> one in 10 infected ever get diagnosed. Incidence of Lyme Disease and
> co-infection is growing rapidly and global warming will only make it spread
> faster. But it’s still relatively small compared to the three categories
> that are most frequently incorrectly diagnosed. As an organization, we have
> to focus on the big targets and let the disease advocacy groups focus on
> the targets closest to their heart.
>
>
>
> That’s one reason why I think the patient partner program is fantastic. We
> train the trainers and they apply our approach to their needs.
>
>
>
> Best,
>
> Helene
>
>
>
>       [image: Image removed by sender.]
>
> Website <http://hmepstein.com/> Twitter <https://twitter.com/hmepstein>
>
> LinkedIn <https://www.linkedin.com/in/helenekepstein/>
>
>>
> Facebook <https://www.facebook.com/HeleneEpsteinAuthor>
>
>
> On Aug 29, 2019, at 12:05 AM, ROBERT M BELL <rmsbell200 at yahoo.com> wrote:
>
> So how could this list of SIDM help prevent this?
>
>
>
> Any ideas?
>
>
>
> Rob Bell
>
>
>
> On Aug 28, 2019, at 6:42 AM, HM Epstein <hmepstein at GMAIL.COM> wrote:
>
>
>
> 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] <https://mail.google.com/mail/u/1/#_edn1>; 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 <https://www.cdc.gov/ticks/diseases/index.html> 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.
>
>
>
>       [image: Image removed by sender.]
>
> Website <http://hmepstein.com/> Twitter <https://twitter.com/hmepstein>
>
> LinkedIn <https://www.linkedin.com/in/helenekepstein/>
>
>>
> Facebook <https://www.facebook.com/HeleneEpsteinAuthor>
>
>
> 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
>
>
>
> David L Meyers, MD FACEP
>
> Society to Improve Diagnosis in Medicine
>
> Listserv Moderator/Board member
>
> www.improvediagnosis.org
>
> Save the Dates: Diagnostic Error in Medicine Conference (DEM2019),
> November 10-13, 2019 at Hyatt Regency Washington, DC (Capitol Hill)
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> ------------------------------
>
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>
>
>
>
> Moderator:David Meyers, Board Member, Society for Improving Diagnosis in
> Medicine
>
> To learn more about SIDM visit:
> http://www.improvediagnosis.org/
>
>
>
>
> ------------------------------
>
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>
> Moderator:David Meyers, Board Member, Society for Improving Diagnosis in
> Medicine
>
> To learn more about SIDM visit:
> http://www.improvediagnosis.org/
>
>
>
>
>
>
> ------------------------------
>
>
>
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> Moderator:David Meyers, Board Member, Society for Improving Diagnosis in
> Medicine
>
> To learn more about SIDM visit:
> http://www.improvediagnosis.org/
>
> ------------------------------
>
>
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>
>
> Moderator:David Meyers, Board Member, Society for Improving Diagnosis in
> Medicine
>
> To learn more about SIDM visit:
> http://www.improvediagnosis.org/
>
>
> ------------------------------
>
>
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Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine


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