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

Diane O'Leary doleary8 at UWO.CA
Fri Aug 30 12:34:04 UTC 2019


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<mailto: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<http://www.isabelhealthcare.com/>


From: HM Epstein <hmepstein at GMAIL.COM<mailto:hmepstein at GMAIL.COM>>
Reply to: Society to Improve Diagnosis in Medicine <IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>>, HM Epstein <hmepstein at GMAIL.COM<mailto:hmepstein at GMAIL.COM>>
Date: Thursday, 29 August 2019 at 15:54
To: "IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>" <IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG<mailto: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<http://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 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<mailto: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<mailto: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 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<mailto: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<http://www.improvediagnosis.org/>
Save the Dates: Diagnostic Error in Medicine Conference (DEM2019), November 10-13, 2019 at Hyatt Regency Washington, DC (Capitol Hill)







________________________________

Address messages to: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>

To unsubscribe from IMPROVEDX: click the following link:
http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?SUBED1=IMPROVEDX&A=1

or send email to: IMPROVEDX-SIGNOFF-REQUEST at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX-SIGNOFF-REQUEST at LIST.IMPROVEDIAGNOSIS.ORG>

Visit the searchable archives or adjust your subscription at: http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?INDEX


Moderator:David Meyers, Board Member, Society for Improving Diagnosis in Medicine

To learn more about SIDM visit:
http://www.improvediagnosis.org/


________________________________

Address messages to: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>

To unsubscribe from IMPROVEDX: click the following link:
http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?SUBED1=IMPROVEDX&A=1

or send email to: IMPROVEDX-SIGNOFF-REQUEST at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX-SIGNOFF-REQUEST at LIST.IMPROVEDIAGNOSIS.ORG>

Visit the searchable archives or adjust your subscription at: http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?INDEX


Moderator:David Meyers, Board Member, Society for Improving Diagnosis in Medicine

To learn more about SIDM visit:
http://www.improvediagnosis.org/



________________________________

Address messages to: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>

To unsubscribe from IMPROVEDX: click the following link:
http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?SUBED1=IMPROVEDX&A=1
or send email to: IMPROVEDX-SIGNOFF-REQUEST at LIST.IMPROVEDIAGNOSIS.ORG<mailto:IMPROVEDX-SIGNOFF-REQUEST at LIST.IMPROVEDIAGNOSIS.ORG>

Visit the searchable archives or adjust your subscription at: http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?INDEX

Moderator:David Meyers, Board Member, Society for Improving Diagnosis in Medicine

To learn more about SIDM visit:
http://www.improvediagnosis.org/

________________________________

Address messages to: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG

To unsubscribe from IMPROVEDX: click the following link:
http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?SUBED1=IMPROVEDX&A=1

or send email to: IMPROVEDX-SIGNOFF-REQUEST at LIST.IMPROVEDIAGNOSIS.ORG

Visit the searchable archives or adjust your subscription at: http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?INDEX

Moderator:David Meyers, Board Member, Society for Improving Diagnosis in Medicine

To learn more about SIDM visit:
http://www.improvediagnosis.org/

To unsubscribe from the IMPROVEDX:
mail to:IMPROVEDX-SIGNOFF-REQUEST at LIST.IMPROVEDIAGNOSIS.ORG
or click the following link: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG

Address messages to: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG

For additional information and subscription commands, visit:
http://www.lsoft.com/resources/faq.asp#4A

http://LIST.IMPROVEDIAGNOSIS.ORG/ (with your password)

Visit the searchable archives or adjust your subscription at:
http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?INDEX

Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine

To unsubscribe from the IMPROVEDX list, click the following link:<br>
<a href="http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?SUBED1=IMPROVEDX&A=1" target="_blank">http://list.improvediagnosis.org/scripts/wa-IMPDIAG.exe?SUBED1=IMPROVEDX&A=1</a>
</p>

HTML Version:
URL: <../attachments/20190830/206164e1/attachment.html>


More information about the Test mailing list