LymeNet Flash: Great article: Two Standards of Care by Lorraine Johnson JD, MBA

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Posted by Dekrator48 (Member # 18239) on :

Hi everyone,

I believe that this article was posted here awhile back.

My LLMD gave me a copy of it at my appt this week.

The author does a great job of explaining what a patient's treatment options should be and why...plus more.

I thought all newbies would benefit from reading it.

Here's the link:

http://www.ilads.org/insurance.html

Posted by Keebler (Member # 12673) on :

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Dekrator,

Yes, that is a good article. This is another that complements it:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)

As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpts:

Meet the players

The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)

and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )

IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat ( www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html - Accessed April 6, 2007).

ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)

especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).

. . .

" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."

`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.

"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."

. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.

- Full article at link above, containing MUCH more detailed information.

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Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.

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Posted by Dekrator48 (Member # 18239) on :

Thanks Keebler!!!

That really is a good article too!!

Posted by Leelee (Member # 19112) on :

Thank you both for posting the articles. Interesting reading!

Posted by Tincup (Member # 5829) on :

Yes, I hear that Lorraine Johnson is a pretty smart cookie.

I've seen some of her other work, which has impressed me.

She now has some excellent blog articles too.

Here are a couple...

Lyme panel: Selection and exclusion bias

http://www.lymedisease.org/news/lymepolicywonk/46.html

Protesting the panel: Putting pen to paper

http://www.lymedisease.org/news/lymepolicywonk/47.html

Posted by Dekrator48 (Member # 18239) on :

Thanks for posting those, Tincup!!!

They are also very interesting!

Posted by bettyg (Member # 6147) on :

unfortunately, they may be good but neuros like me can't read or comprehend them.

do you think lorraine would mind if i copied here and broke them up for us neuro patients?

Posted by ElaineC (Member # 9857) on :

Keebler - this is a fantastic article! Thanks!

Posted by Dekrator48 (Member # 18239) on :

bettyg,

I can't really speak for her, but since she's such a great advocate, I'm guessing that as long as she is referenced as the author she would be ok.

Posted by bettyg (Member # 6147) on :

dek, i have her email, i'll email her for her blessings in my copying/BREAKING it up for us neuro folks!! [Smile]

Posted by Dekrator48 (Member # 18239) on :

Great idea bettyg, you are always thinking!