LLMD in or near NYC

[Imajerk]

Hi, I was visiting my doc's for a routine exam and bloodwork. The PA asked if she wanted me to go over my old blood work. She did. Among those papers in Aug 2010 I had requested a lyme test because I found a tick in my neck a month earlier. THAT tick turned out to be a wood tick, not engorged, and easily removed, so it hadn't been there long.

The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."

WhaaaaaaaaAAAAAAAA???!?!?!?

So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose. If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around! What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient.

I THINK this was an ELISA test but don't quote me on it. I should have  asked more Qs then and there but it was still hitting me.  The CanLyme website said false positives are rare. True? False?

Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC.

[JackieCalifornia]

I had read that the case definition had been updated recently to be more specific about its applicability/reliability, but hadn't looked at it till today.

Yeah, someday those docs will learn not to get between a Mama Grizzly and her cub's welfare.  :)  You go!

[Ricobord]

Thank you!  I hadn't seen that page yet. I wish I'd had a printout of that when doctors were telling me I didn't have Lyme because I tested negative.

The CDC should also change its two tier protocol to stop discouraging a WB when the ELISA or IFA is negative. Some insurance companies won't even pay for a WB if the screen is negative, thanks to this testing protocol.  

When my daughter got bit by a tick, her doctor ordered the IFA and the Western Blot.  The lab did not run the WB because IFA was negative.  When I called to complain, the woman at the lab argued with me saying that they don't run a WB if the IFA is negative.  She only backed off when she retrieved the original order to confirm the doctor had specifically ordered the WB. The phlebotomist had even entered the WB as a separate order with a separate vial to make sure they ran both. Grrr.  Even when we try to do the right thing, we're fighting the old entrenched beliefs.

[JackieCalifornia]

www [dot] cdc [dot ] gov / osels / ph_surveillance / nndss / casedef / lyme _ disease _ current [dot] htm

This is the current (2011) CDC case definition of Lyme, meaning the standards the CDC sets to track absolutely unquestionable cases of Lyme, which leaves out unknown numbers of real Lyme disease sufferers in order to keep the data pure.  The docs who deny Lyme is a serious issue in this country have relied on these very high *surveillance* standards for *diagnostic* purposes, thus leaving out some, likely many, very ill people.

The first line says:  "This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis."

At the bottom of the page are links to previous case definitions, which would make interesting reading to see how things have changed, if you're interested.  

[Ricobord]

Also, from the "Cure Unknown" book, the author describes how the CDC surveillance criteria that was adopted had already been proposed by Dr. A.Steere a few months before to account for the Lyme vaccine that was about to be released in the mid 90's..  He was the primary consultant on the vaccine.  The two prominent Borrelia specific bands (antibodies) that were chosen for the vaccine development would show up positive on people who had been vaccinated, so they wanted to exclude those bands from test interpretation to avoid false positives. The CDC wasn't trying to capture all cases, just the positively positive ones.

But what if you are genuinely infected and only showing those two Borrelia specific bands?  Sorry!  You test "negative"!

A few years later, the IDSA was concerned about patient hysteria over Lyme and felt that too many doctors were over diagnosing and over treating it.  There was a lot of genuine confusion over how to read a Western Blot. They insisted that the CDC surveillance criteria should become the diagnostic test and the CDC went along with it. There were many protests by physicians that were ignored.  There have been several studies published showing that many cases are missed by this test interpretation.  Even the biggest maker of Lyme test kits for labs has a more accurate test interpretation to offer.

The CDC won't change it because they insist they're not trying to count every case.  They have gone on the record saying that they believe the actual cases of Lyme are between 3 and 12 times what is reported.  And yet they know this testing criteria is being used to deny people a diagnosis.  And that the number of reported cases is widely and wrongly believed to be a complete count.

But at least they now say (somewhere) that Lyme is a clinical diagnosis.  However, I have yet to see any evidence of trying to educate doctors on when and how to do this. Unless there is a lot of loud public and political pressure, the status quo reigns.

[JackieCalifornia]

Well, if the doc believes that, out of 10 markers, 5 positives are needed to indicate positive, then why would the doc say you are positive at 3 markers?  It's not like the test is counting votes ... it's all indistinct, murky data, and the nonbelievers have arguments they believe and can claim to justify.  Doesn't mean they are right, but it also doesn't mean they are evil or criminal.

Mind you, I think they are *wrong* in many cases, but as I keep saying, it's not a +/- pregnancy test.  The testing just is not that precise.  The problem I have with the Lyme deniers is that they have not updated their analysis as more data has come in about the nature of Lyme.  

[Imajerk]

I called Stonybrook once and I thought they did not test people anymore. Or maybe they just don't test the ticks! They did say by the time a tick test comes back you would have your OWN tests come back pos or neg.

I will call them again.

I also got two emails from ILADS with doc recommendations.

Thanks guys. Thanks for the def for floaters. I don't seem to have those.
If this is lyme or some other tick disease that caused a positive response, I will be grateful to have a strong immune system or strain of bacteria that could have been even worse by now.     I will keep posted and I wish you all well!  You are wonderful to be here helping people.