Validity of the CDC 2-tiered Test for Late Lyme Borreliosis

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
Camp Other
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Camp Other » Fri 5 Apr 2013 0:23

Henry wrote:Sophsky: Some physicians may not know this. But, it always has been the view of the IDSA , as well as any physician who knows anything at all about Lyme disease that the EM is sufficiently diagnostic in itself to justify treatment without the need for further tests.
Henry, what can we do to ensure more physicians have that information and use it? And know that not all EM rashes present as a bull's eye with a clearing? I had a solid expanding bull's eye rash where all the bands were red but the center was much darker (almost a blue-red) as was the outer edge. Over the cm limit and growing. Not an allergic reaction. (That cm limit is going to have to change to accomodate B. miyamotoi rashes, for what it's worth - another story, as odds are greater there will be no rash at all.)

Not all EM rashes look like the bull's eye with clearing. So does it make sense to educate more doctors that the EM can present in different ways and teach them to look for a puncture in the center if the tick was not remembered by the patient?

Mine was - and I had the tick on me in a container during my office visit, and yet I still did not get 2 weeks of doxy on the spot. I got one 200mg pill. It seemed like the doctor was not familiar with the IDSA guidelines based on my experience.

I think some patients wouldn't feel half as angry about what's happening if more doctors took care of Lyme disease when the odds of recovery are better. That means - Mr. MD, at least follow the IDSA guidelines for Lyme disease when it is new and right in front of you? I might very well not be here if the doctor who first saw me did their job properly.

I do hold some of these family doctors accountable for the situation a number of us are in.

migs
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by migs » Fri 5 Apr 2013 1:16

That is another symptom of the larger problem. Lyme can be a very big deal and most docs don't know that.

My EM was a solid patch of red until I looked at it a couple days later and it was faded in the center and just a big circle around the site of the tick attachment. A day after that it was gone. A while after, a physician told me I should have taken a photo of it while it looked like a bullseye? Was my EM not good enough or described exactly as he had read? Lack of knowledge.

I think if physicians were aware that it is more common than previously thought and if you do indeed get Lyme Disease, it may be life altering, they might not look so close for a specific size or shape of EM. They may address the issue immediately, just in case. I know first hand that some ID docs want to know time of attachment, engorgement, what exactly it looked like, how long the "redness" lasted. It is exclusion criteria for too many and if they want to split hairs to INCLUDE they might ask if it was crushed at all or if you were stupid enough to leave the snout inside for weeks after you broke the rest of it off.

I really think that when many docs find a reason to throw you into the pile of "Lyme paranoid" and send you on your way with a (reliable) test order just to be safe, they don't realize what they are sentencing you to.

duncan
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by duncan » Fri 5 Apr 2013 10:36

One can't help but wonder why doctors are so misinformed. Why they are, as a group, apparently so dismissive of the serious ramifications of untreated or under-treated Borrelia. Why they are so reluctant to act proactively in the interest of the patient, and instead seem to frequently cling to inertia like an opiate to deaden responsibility.

Maybe if there were a composite of borrelia symptoms, broken down by disease stage, a compendium of how the disease presented over time...diagnostic guidelines, if you will...Maybe something like that would help. Signs would be helpful too, and should be included, but as they are typically transitory, I would argue the emphasis would be on harvesting symptoms, and categorizing symptom progression.

The question is who would be qualified to aggregate such guidelines and bring them to market. :?

Henry
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Henry » Fri 5 Apr 2013 14:21

The CDC and the IDSA have been collaborating for some time on a CME program to educate physicians on how to diagnose Lyme disease, especially on how to recognize the EM rash. Several photos of EM rashes are available on the the course that is offered on the IDSA website; more as well as other pertinent information will be added in time.

Yes, the education of primary care physicians about Lyme disease -- even in endemic areas-- is a big problem. Unfortunately, I have no data on the number of physicians who are taking advantages of this educational opportunity which no doubt can be expanded and improved . One can lead a horse to water, but can't make it drink.......I once attended a Lyme disease meeting in Connecticut, an endemic area, and was astounded at the number of primary care physicians who were unable to recognize an EM rash. Obviously, the education of physicians about Lyme disease is an area where the State can make a real and significant contribution to the public health.

Lorima
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Lorima » Fri 5 Apr 2013 15:11

Ah, yes, CME courses. Like this one? 
http://lymecourse.idsociety.org/ 

The trouble is, when the textbooks are wrong, all the education provided to physicians by their trusted sources is wrong, too. 

A related problem is that the target-style rash has been overhyped. 

For example, see the CDC's picture here: 

http://www.cdc.gov/lyme/signs_symptoms/index.html 

And see the ALDF's picture, here: 

http://www.aldf.com/lyme.shtml 

You can dig further into the ALDF's website and get pictures of solid rashes without central clearing, but knowing the hasty habits of most web surfers (including physicians), it's obviously foolish to first offer them a single photo of a target rash. You can just about count on them to fixate on it, and ignore subsequent qualifications that EM often (usually?) doesn't have a central clearing. 

Doctors mostly don't get this, but experienced LD patients and advocates are fully aware of this phenomenon, as evidenced in this cartoon (by patient John McPherson) presented at the recent TBDA-sponsored LD panel discussion at Columbia: 

Image 
"I have to understand the world, you see."
Richard Feynman

duncan
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by duncan » Fri 5 Apr 2013 15:33

Lorima, I think your observations are spot-on, but I would argue the deficiencies in some current diagnostic guideline alternatives extend beyond questions of accuracy or even relevance, and into the territory tone and attitude. The dismissive element I alluded to earlier didn't sprout out of thin air by clinicians; imo, that kernel was planted. ;)

Henry
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Henry » Fri 5 Apr 2013 16:27

Lorima: My, my. All of the medical text books and journals are wrong? No one can trust the CDC and NIH, least of all the IDSA? All of the knowledge derived from NIH-supported evidence-based research can't be trusted either?

It doesn't require much intelligence to offer such destructive and jaded negativity. However, I have yet to hear you utter anything that is POSITIVE. So, after you finish reforming the medical and biomedical profession, just what do you plan to do next? Is it any wonder, after reading your ludicrous rants and speculations, patients turn to the "quacks" for solace. The "quacks" ought to give you a commission for all the new and totally confused patients that you deliver to them. But, talk is cheap. How much research have you done by the way? What has been the positive impact of all the "wisdom" you have showered upon us? Nothing. Your time might be better spent bird watching. Do more of that. It might make you feel better about life and yourself.

phyfe
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by phyfe » Fri 5 Apr 2013 16:57

:roll:

Lorima
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Lorima » Fri 5 Apr 2013 20:12

Henry,
Hmm, I just sent people to the IDSA, the CDC, and the ALDF; and you say I'm sending people to quacks.

Are you sure that's what you really wanted to say? ;)
"I have to understand the world, you see."
Richard Feynman

Henry
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Henry » Fri 5 Apr 2013 20:43

Lorima: My comments apply to the validity of the CDC 2 tiered test for late Lyme borreliosis, which is the subject of this discussion, and your previous comments on that issue (pages 10 and 11). Everyone who knows anything about Lyme disease knows about the diversity of patterns for the EM rash. Not all are perfect bull's eyes to be sure. But, that's a distraction from the central topic of this discussion -- the validity of the CDC 2 tiered test and your insinuations about the "politics" involved. .

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