Re: Strange Illness For Over One Year, Please Help!

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Robert wrote:

Culture is definitive as mentioned. 

But extremely difficult to accomplish with B.b


Lyme is not endemic in our area.

If you're in the U.S. it's present. I know folks who've been covered by ticks and contracted multiple TBDs in states with allegedly no Lyme disease. Docs don't diagnose or suspect what they're told isn't present in their area.

I have 
never seen a request for such a culture although we would obviously provide
it upon request.

I'm not surprised. This is quite possibly due to ignorance of the reality of tick distribution.


It is for research purposes only. Please show me something new that the
researchers provide in diagnosing lyme disease besides bad mouthing all lab
tests?

My point is that research has not yielded reliable tests, though we at least have more coinfections to look for. If anyone of them shows up in serology, at least we have evidence for vector exposure and support for the clinical diagnosis.


This is the quote you gave me.
"Yes, and William Golde, an immunologist who left the CDC to do research
elsewhere said in a meeting I attended, "there is no clinically meaningful
diagnostic test for Lyme disease."

How do you interpret that?

That the tests can not be used as diagnostic tools, only as support for a clinical diagnosis. If positive, they're not useless. Sometimes they're positive. Often, they're not positive, even PCR, until after months of abx treatment.


Where does it say that Golde was talking about ruling out?

Now you're being kind of silly. He said they cannot be relied upon diagnostically.


Tell the immunlogist to get off his ass and come up with a diagnostic test.
It is he, the immunologist, the researchers who need to come up with
something new.


No argument there.


Where is he working now? What company is he doing Lyme disease research for
so he can sell his own serology kit to.

He had been a researcher with the CDC. Last I saw him, he was a researcher at a NY academic medical center.


Diagnostic standard? He has no diagnostic standard when he makes the above
statement. I already mentioned the problems with serology. He disagrees with
the CDC recommendations?

I can't actually repeat what he said about his experience working at the CDC. He did say that his new research appointment was a refreshing change, though.


I don't know what you mean by "confirm a clinical diagnosis".

I'm sorry for not making it clear to you. I really think we're being redundant.


It varies with the lab and it is the labs responsiblity to report the
negative or positive based on their criteria. If the doctor doesn't like
that then can send it out to another lab.

Labs follow the CDC surveillance criteria. A doctor has to lean very hard to get bands reported that aren't on the CDC specific list developed in 1994.

Most of the western blots involving all other serologies involve reporting
of all bands and then stating the negative or positive interpretation. I
agree it is helpful in noting the bands as there is a difference when no
bands are present or 1,2, 3 or 8 are present.

Some bands are far more specific to B.b than others, and their diagnostic value should be weighted. Some of these are excluded by the CDC, while #41, flagellar protein is included. I don't know where you practice, but many bands are unreported on as the rule, and the WB called non-reactive.


 As I have mentioned and you restated that a biopsy or even a syringe
aspirate of a petechiae as I have seen with meningococcemia can yeild a
definite culture positive finding.

I know of at least 10 folks with expanded rashes, fever and CNS disease and positive serology whose fluid came back negative. Even in confirmed disease where there is negative serology, any neurologist will tell you the chance of finding evidence in the CSF is 5%.



Tell your immunologist friend to come up with a better test then. 

Definitely not a friend, just a very informative speaker.

Don't forget to mention that their is cross reactivity with non TBD's,
Erhlichia and other TBD's so even the positives may not be positive for
Lyme's.


It's Lyme, not Lyme's; you have heard of it, right?  The above is bull***.


You do care which is why you know you had mixed TBD's. The immunologists you
heard thinks the same as you.

Tests as commonly reported missed my diseases til long after I'd been disabled, and til months after I'd been treated. Even when I had a swollen knee and evanescent EMs, the dx was missed.

There's no way to check for results without a definitive diagnosis.
Lyme disease is not always classic in presentation then the clinical
diagnosis becomes less definitive. Mixed and not great results in someone
without the classic diagnosis leaves one to wonder.

Depends how one defines the clinical diagnosis. Most folks don't see a rash or a tick. Or the rash, as discovered during the LymeRix trials, is a cluster of vesicles, or streaks, or other forms that doctors aren't told to look for. Bullseye rashes were the least frequent occurring of the culture positives during the trials.

TB grows inside macrophages intended to kill it. 

It has a real affinity for glial cells, too.

There isn't a bug out there that does not have capabilities that are well
suited for it's host.

You're not very familiar with the special qualities of borrelia in evading immune detection?


I don't know what you mean by that? Financial stake at reporting results?

You haven't noticed all the concern in medical journals about investigators with financial stakes in the products they test then report on?


What he said was that there was no "clinically meaningful diagnostic
test for Lyme disease."  It was a verbatim quote.  He disagreed with
your assessement of the "proven" nature of the tests.


We disagree. 

You disagree with a verbatim quote?  Were you in the room?

Susan
.