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


"Susan" <nevermind@xxxxxxxxxx> wrote in message
news:3qink4Ff6os9U1@xxxxxxxxxxxxxxxxx
> x-no-archive: yes
>
> Robert wrote:
>
> > There is the ANA that was positive which is interesting but not followed
up
> > as far as I can tell. Reumatoid Arthritis RA titer serology or liver
enzymes
> > are not mentioned.
>
> Positive ANA is common in late TBD patients, anecdotally.
>
> >
> >
> >>Other tests that should be run any time there's a suspicion of TBD are
> >>for the ehrlichiae (HGE, HME), bartonella, and other rickettsia. None
> >>of these tests are highly reliable, clinically.
> >
> >
> > Leukopenia is seen in TBD. Serology sucks. I would do PCR testing to
> > supplement serology.
>
> PCR sucks, too, even in spinal fluid. borrelia aren't just swimming
> around in body fluids, easily detected, or there'd be no serology
> controversy.

It is always more definitive to find a living breathing bug that one can
look at. It's brother causing relapsing fever also a Borrelia is fairly easy
to see on blood smears for diagnosis. Lyme Borrelia is also found in ticks
quite easily.
>
> > Serology is not ideal in interpretation of clinical situations, false
> > positives, past infections, subclinical infections etc.
>
> I don't believe in false positive results, that's a non fact created out
> of whole cloth by the same folks who tell you their Lyme tests are 99%
> accurate.
That's going a bit too far. LD can cause false positive ANA's and RF
testing. The whole history of TBD is full of cross reacting antibodies. The
earliest testing was based on proteus antigens and other bacterial antigens
in what was called febrile agglutinins Weil-Felix.
He is the cross reactions with IgG testing
"Patients with other spirochetal disease and/or who test positive for
rheumatoid factor or Epstein Barr virus may have cross-reacting antibodies.
A positive response in this, as in any antibody assay, indicates
sensitization, not necessarily active disease."
link below

I attended a public health seminar on CNS infections and they are having
problems with West Nile virus cross reactivity in south east asians,
phillipinos in the states making the test useless in these individuals for
epidemiological purposes or diagnostic purposes.

The lyme test kits like any test performed in the States must be approved by
the FDA after testing on clinical specimens and been evaluated with
specificity and sensitivity. There was an HIV test kit that was being sold
marketed as 96% "accurate". This was a Candian company that was sued by the
Feds for inaccurate of false ads in which the test was not determined to be
that accurate. The company settled out of court and the kit was removed off
the American market.
Without seeing the ad I can't really comment. I know that there is a
difference between biological false positives and negatives.
If one wanted to start their own lab they would have to show parallel
studies by sending out specimens and performing your own testing and then
make statistical correlations of the two.
These would have to comply with NCEP and CLIA recommendations.
Once you start doing these then you would be forced to be blind tested with
unkown samples submitted by several agencies.
We get 5 samples quarterly for syphilis serology.
If you flunk the test by reporting out a wrong result then you are no longer
able to perform that test.
Keep in mind if you don't have any antibodies as in early infection then it
is not the test per say that is at fault.
You measure with the gold standard as reference unless the newer test
eventually becomes the gold standard.

If you have clinical symptoms *and* any Bb specific bands,
> for instance, I believe a good clinician should treat, once other likely
> causes are ruled out.

Symptoms may not be specific so I don't know what you mean by clinical
symptoms. Bands may or may not be specific by themselves as quite often
multiple bands may need to be present.
These are all standards derived by studies. The more bands present then the
more specificity and less sensitivity in picking up all cases and if you use
less bands then you increase sensitivity but you also lost some specificity.
The conservative CDC uses 5 of 10 bands. Some companies use less but often
the report will say how many bands along with interpretation.

>
>
> > That's a problem with serology as you stated.
> >
>
> Yes, for a host of reasons, like genetic heterogeneity, evasion of
> immune detection by cloaking in host proteins, shedding cell walls,
> immunomodulation by pathogens, and diseases spread by ticks that we have
> no names and no tests for yet. :-/
>
> Susan

You really have to be careful when saying someone has something when you
can't see evidence for it.


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