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


"Susan" <nevermind@xxxxxxxxxx> wrote in message
news:3qlj16Ffo9d0U1@xxxxxxxxxxxxxxxxx
> x-no-archive: yes
>
> Robert wrote:
>
> > I was referring to relapsing fever Borrelia. Lyme Borrelia are found in
> > ticks quite easily with phase microscopy.
>
> Yes.
>
> > In humans that is of limited value. I did not say that was routinely
done or
> > practical for human diagnosis. I don't need a Medline search to tell me
what
> > I have been doing all these years.
> > I have been asked by ER doctors on how to diagnose Lyme disease and what
> > tests to do. Not because they really didn't know what to do only that
they
> > are expecting something recent or cutting edge in finding a rapid test
for
> > it. None exists. I told them it is diagnosed clinically and serology
takes a
> > week to get back.
>
> When possible, it can be useful to send a punch biopsy from the leading
> edge of any rash to a lab capable of culturing borrelia, but there are
> very few who do this competently, IIRC.

Culture is definitive as mentioned. Lyme is not endemic in our area. I have
never seen a request for such a culture although we would obviously provide
it upon request.

>
>
> > I am involved clinically. Research is research which means unproved and
> > unevaluated in a clinical setting. Some research never finds it's way
out of
> > research. Only useful proven research makes it's way into clinical
practice.
>
> Not so. Much unproven research makes its way into clinical practice.

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?
Mention it and I will tell the doctors in the next ten years when they ask
again.

> TBD serology is one such thing. Nothing is proven, hence all the
> controversy.
>
> >
> > If I understand your stance on the state of affairs on Lyme research is
that
> > all tests are useless. That's a step back and not forward. Tell us
something
> > we don't know.
>
> I wouldn't say all tests are useless.

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?

A positive test can confirm what
> can be a difficult clinical diagnosis. It's just not to be used as it
> so often is, and has been in the case we were discussing, to rule out
> disease.

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

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.
>
>
> > Again you misquote him.
>
> Were you in the room? I was, with about 20 other folks.

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

>
> > Are you telling me he would not do any serology
> > testing at all?
>
> He's not a clinician, so I doubt he would. His point was that the tests
> are not capable of meeting a *diagnostic* standard.

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?
What is the best way to diagnose neurosyphilis? There is none.
Serology test can be negative including a CSF VDRL. SO?
Welcome to the world of serology. Does he like serology?
There is nothing unique about Lyme disease so I am sorry if he thinks it is
very unique.
>
> >There are diagnostic test out there that many people have
> > been diagnosed with.
>
> Tests which should have been used to confirm a clinical diagnosis, not
> rule it in or out on their own.

I don't know what you mean by "confirm a clinical diagnosis".
Confirmatory testing means something different in medicine. It reflects
something that is more definitive after initial screening.
An ELISA test is confirmed by Western Blot testing. A PCP by EIA is
confirmed by GC/MS.
The proper word as used by the FDA website is "supports" the diagnosis and
not confirms it.
>
> >A rise in titer is definitive for current infection
> > along with Western blot for antigens.
>
> A lack of rise in titer means nothing.
A negative to a positive, is a rise in titer. It is more definitive. I did
not say it the other way around.
A level titer may indicate a past infection. Some people with Lyme disease
will always have a positive titer even after successful treatment. The same
applies to most other serology.
Unless a doctor demands that all
> bands be reported (not just absurdly exclusive bands on the WB) one
> might miss useful, B.b specific bands. Thus, a confirmatory test is too
> often reported as non-reactive.

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.
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.
>
> > What he meant to say was there is no test that will pick up all cases of
> > Lyme disease.
>
> The exact, verbatim quote was, "there is no clinically meaningful
> diagnostic test for Lyme disease."

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.

>
> >You can not depend on serology to always diagnose the disease.
>
> Especially not TBDs.
>
> > If you have primary syphilis diagnosed with dark field microscopy and
given
> > antibiotics then you will never develop antibodies to syphilis. You will
> > never have a positive serology test for syphilis.
> > The same goes for Lymes disease.
>
> Or you may mount an immune response that the FDA test kit isn't equipped
> to detect, for the approx. 75% of genetic strains that the kit doesn't
> look for.
Tell your immunologist friend to come up with a better test then.
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.

Abx can definitely abrogate immune response, and B.b is
> gifted at evasion, too, as mentioned earlier.

There are many gifted parasites out there and not so gifted immunologists at
trying to decifer them.

>
> >Antibotics interfere with antibody
> > production so if you suggest to treat all with classic disease then you
> > might not get serological evidence in the future.
>
> I'm disabled by long term undiagnosed mixed TBDs,
Sorry about that so I will back off. My mistake.

my child was horribly
> ill with the same for 3 1/2 years, finally cured years ago my empiric
> trial of atovaquone/zithromax after good, not great results on abx; ask
> me if I give a rat's ass about test results,
You do care which is why you know you had mixed TBD's. The immunologists you
heard thinks the same as you.

compared to early, curative
> treatment.
> I just care about results.

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.

>
> > That is what I am saying when it comes to the immune system and evidence
via
> > ANA RF titers which are antibodies. They are pumping out millions of
> > antibodies some of which are directed and cross reacting else where.
> > You are saying the bacteria is stealth and hides it's antigens by
wrapping
> > around itself with host tissue then you would not see millions of
> > antibodies.
>
> Yes, but that was one scenario. It's a known fact that B.b cloaks itself
> in host protein to evade detection.

TB grows inside macrophages intended to kill it.
There isn't a bug out there that does not have capabilities that are well
suited for it's host.
> >
> > I never said the test picks up all antibodies formed against borrelia.
The
> > antibodies formed against the bug have been established with clinical
case
> > studies and correlated with blood samples and proven to be of value.
>
> Very limited value. There's a reason that the emphasis is on clinical
> diagnosis. What constitutes grounds for diagnosis is where the
> controversy is. Lyme is both over and underdiagnosed. The tests are of
> extremely limited value, and I disbelieve the reporting of the results.
> Maybe when we have some from those without a financial stake in the
> reported results...

I don't know what you mean by that? Financial stake at reporting results?
>
> All
> > serology testing has limitations. What he said is correct and also a
given.
> > We all know that. We deal with the antibodies that are known and the
next
> > generation can deal with what they find.
>
> 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.

>
> Anyway, we're way off topic for this group, and I think we can only
> repeat ourselves at this point.
>
> Take care,
>
> Susan

Good luck to you.


.

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