An anecdote of a missed diagnosis: Lyme Disease, Kris Kristofferson

HM Epstein hmepstein at GMAIL.COM
Fri Jul 8 16:26:12 UTC 2016


Brian, et al:

While there may be major problems with this article, there aren't major
problems with the story. The Huff Post article came out weeks after
mainstream media covered the story of Kristofferson's misdiagnosis,
starting with this *Rolling Stone* article
<http://www.rollingstone.com/music/features/kris-kristofferson-an-outlaw-at-80-20160606>
that refers to it without diving into medical details. 142 thousand
articles have been written in various online news sites and blogs, and most
of them with a specific bias relevant to the site's interests. The problem
with the article is that the journalist is not a journalist but is openly
biased ("Singer/ Songwriter/ NY’er/ Dog-rescuer/ Champion for those
suffering with Lyme and associated diseases") using leading questions.
However, that said, I agree with many, if not all, of the points made in
the article and feel the need to share a couple of rejoinders to Brian's
email.

Before I get into the specifics, let me remind you that the CDC recently
upgraded their estimate of the frequency of Lyme disease in the US. They
now estimate that 300,000 people are infected annually but only a small
proportion of them (30,000 annually) get diagnosed and reported.
http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html Lyme disease
is a serious diagnostic error issue in the US because, like syphilis, it's
the great pretender.

I apologize for the length of this reply but there are some key details
that need to be addressed.


   1. The doctor who initially diagnosed Kristofferson shouldn't be
   dismissed as an alternative doctor or a "holistic" practitioner. He is
   actually a real doctor who uses both mainstream techniques and alternative
   technqiues to treat. "Dr. Filidei received his undergraduate degree in
   physiology from the University of California Davis and his medical degree
   from UNT Health Science Center in Texas. He completed his internship at
   Tulane University and his residency in Internal Medicine at Brown
   University."

   However, in our experience, mainstream doctors, even in Lyme endemic
   areas like ours was, do not understand how to test for Lyme disease, how to
   read the tests properly, nor do they understand how spirochetal activity
   works in the body. We know this because my son nearly died from
   neuroborreliosis Lyme disease after having seen over 20 top specialists in
   a seven-year period. It's the driving momentum for my book on pediatric
   diagnostic error, which is being heavily researched and is not limited to
   Lyme Disease.

   2. As for the testing protocol, my son was tested for Lyme disease at
   least once a year. And every doctor mis-ordered the tests and misunderstood
   the test results. Brian, you wrote, " Basically, labs like this either
   promote tests that happen to have high positivity rates combined with poor
   specificity, or engineer the cutoffs to increase the positivity rate at the
   expense of specificity." Sorry but that's inaccurate and has been
   something that many doctors believed to the detriment of their patients.

   We found that practitioners who followed the IDSA guidelines were
   uniformly wrong about my son's situation. The LLMDs (Lyme literate medical
   doctors, which is not an AMA specialty but is used by physicians who
   undertook specific additional training) that we worked with followed the
   ILADS (International Lyme and Associated Diseases Society) diagnostic and
   treatment guidelines which are currently the only guideline approved by the
   National Guidelines Clearinghouse. These were not "holistic" doctors. They
   were graduates of the finest medical schools in the country including Yale,
   Harvard, University of Pennsylvania, Johns Hopkins, even Beijing. Yet they
   uniformly they avoided labcorp and quest labs for Lyme or other tick-borne
   blood and urine tests outside of the normal CPT variety. Why?

   The LLMDs used labs like IGeneX and Stony Brook, because those labs
   include the *full spectrum of results in their reports*, not just the
   top line. Most labs don't report or properly test the full spectrum so a
   lot of key data is lost to the diagnosticians. There are reasons they don't
   (it's cheaper, it's not required by the CDC, probably a bunch more) but one
   is that the IDSA standards have chosen to ignore several bands in the
   various Lyme Western Blots because they may report positive results for
   patients who received the Lyme vaccine, a failed vaccine that has not been
   used since before 2002. If a patient didn't get the vaccine, the labs
   should report and the doctor should review the full spectrum results.

   The most important part of the testing issues around Lyme disease is the
   lack of understanding amongst many general practitioners about how
   spirochetes operate. For anyone, but especially for a child, Lyme
   spirochetes quickly overwhelm the immune system so that ELISA and Western
   blots looking for antibodies come back negative or nonspecific after the
   first few months of disease. My son didn't test positive for antibodies to
   Lyme for the first 7 years of testing, not until a full year after he
   started antibiotic therapy and his immune system was back in order.

   What he did get was an extremely high result for a test called Immune
   Complexes C1Q binding which we did at LabCorp. The number should be 4.4 or
   below. His test result was 28.2 He also showed an extremely low result in
   his LabCorp HNK1 (CD57) Profile. Those two tests, unknown to his infectious
   disease specialists, his neurologists, his pediatricians, his cardiologist,
   or anyone but his LLMDs, indicated he was fighting an extremely vigorous
   infection that was missed by all other tests. When the Western Blots were
   finally done by IGeneX and Stony Brook, both showing the full spectrum, his
   Lyme markers were clearly positive in the bands the other labs had left out.

   We followed that with a BrainSPECT scan at NY Presbyterian that showed
   encephalitis due to Lyme Disease or auto immune disease (he tested negative
   for all known testable auto immune diseases). That allowed the new doctors
   to feel comfortable with a diagnosis of neuroborreliosis and to begin
   treatment. In three weeks, he went from a bed-ridden child with no
   strength, no memory, tremors, joint pain, narcolepsy, Tourette's, OCD,
   ADHD, to an "A" high school student again and then a graduate of Johns
   Hopkins. He will always have to be careful to keep his immune system strong
   and he has had relapses, but he is happy, healthy, working and in love.

   3. What is considered "alternative" therapy today may become mainstream
   tomorrow. When we close our eyes to new approaches, we hurt our
   patients. Twenty years ago, a gluten free diet was a "holistic"
   approach. Gluten sensitivity wasn't routinely considered but for many
   people with GI issues, avoiding glutens helps reduce their need for
   medicines with lots of side effects.  There is a crazy therapy called the
   Rife machine. Even while we tested it, we had doubts it would have any
   impact. It was a do-no-harm therapy, so we tried it on our son. I truly
   can't tell you if it did anything for him. While it's routinely used in
   Europe for Lyme disease and other immune system disorders, in the US it's
   only permitted for testing purposes. Truly crazy s--t. Yet, a top brain
   surgeon at MSK has been doing clinical studies using a version of the Rife
   machine and has gotten some good results building brain cancer patient's
   immune systems with it. Interesting, no?

Best,
Helene

hmepstein.com
@hmepstein <https://twitter.com/hmepstein>
Mobile: 914-522-2116

On Fri, Jul 8, 2016 at 10:11 AM, Jackson, Brian <brian.jackson at aruplab.com>
wrote:

> Major problems with this story.
>
>
>
> 1.       Alternative medicine conspiracy theory theme:  “Mainstream”
> medicine doesn’t know how to diagnose certain diseases, and they’re too
> proud to see the light, but “holistic” practitioners have special knowledge
> and are better advocates for their patients.  Right.
>
> 2.       Misunderstanding of diagnostic accuracy theme:  it’s true that
> available tests from major labs (including my own) have serious sensitivity
> and/or specificity limitations for diagnosing Lyme disease.  Which is why
> reputable mainstream medical groups such as Infectious Disease Society of
> North America and American College of Physicians have issued
> recommendations to be very cautious of such test results, and rely more
> heavily on history and symptoms.  The article actually refers to this.  But
> then the article goes on to become an advertisement for a certain
> non-mainstream lab that caters to the holistic practitioner community.
> Such labs don’t have any special science that’s not available to mainstream
> labs; there’s no “special sauce” in our industry.  Basically, labs like
> this either promote tests that happen to have high positivity rates
> combined with poor specificity, or engineer the cutoffs to increase the
> positivity rate at the expense of specificity.  (Note:  I’m not
> specifically referring to IGeneX, since I don’t have any inside knowledge
> of their tests or practices.)  Sure, diagnosing all chronic fatigue
> patients with Lyme might pick up the occasional undiagnosed Lyme infection
> and get it treated.  It will also subject lots of patients who don’t have
> Lyme to long courses of IV antibiotics that they don’t need.
>
> 3.       Science still has a long way to go to satisfactorily diagnose
> and treat Lyme (or chronic fatigue, or fibromyalgia, or autism, or for that
> matter most metastatic cancers).  But the solution isn’t to throw the
> scientific baby out with the bath water and go the “alternative” route.
>
>
>
> Having said all that, I’m sincerely glad Mr. Kristofferson is doing much
> better after that strange journey.
>
>
>
> --Brian Jackson
>
>
>
> *From:* Hamm, Robert M. (HSC) [mailto:Robert-Hamm at OUHSC.EDU]
> *Sent:* Thursday, July 07, 2016 9:38 PM
> *To:* IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> *Subject:* [IMPROVEDX] An anecdote of a missed diagnosis: Lyme Disease,
> Kris Kristofferson
>
>
>
>
> http://www.huffingtonpost.com/entry/a-slow-slipping-away-kris-kristoffersons-long_us_577c047be4b00a3ae4ce6609
>
>
>
>
> Robert M. Hamm, PhD
>
> Clinical Decision Making Program
>
> Department of Family and Preventive Medicine
>
> University of Oklahoma Health Sciences Center
>
> 900 NE 10th Street
>
> Oklahoma City OK 73104
>
> 405 271 5362 ext 32306       Fax 405 271 2784
>
> robert-hamm at ouhsc.edu
>
>
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Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine


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