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


"Susan" <nevermind@xxxxxxxxxx> wrote in message
news:3qkl5iFf1mo8U1@xxxxxxxxxxxxxxxxx
> x-no-archive: yes
>
> Robert wrote:
>
> > 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.
>
> It would be lovely to find a tick embedded in a bite confessing the sin
> of having infected us, but it doesn't happen. It is not at all easy to
> find borrelia in humans for a whole variety of reasons. Don't take my
> word for it, check Medline.

I was referring to relapsing fever Borrelia. Lyme Borrelia are found in
ticks quite easily with phase microscopy.
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.
>
>
> > That's going a bit too far.
>
> Not if you've spent many years paying attention to research in this
> area, as I have, discussing it with researchers, reading the literature.

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.

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.

>
> 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.
>
>
> 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."

Again you misquote him. Are you telling me he would not do any serology
testing at all? There are diagnostic test out there that many people have
been diagnosed with. A rise in titer is definitive for current infection
along with Western blot for antigens.
What he meant to say was there is no test that will pick up all cases of
Lyme disease. You can not depend on serology to always diagnose the disease.
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. 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.

He went on to say, "you
> may be pumping out a million antibodies to some strain of borrelia, but
> the FDA approved test kits won't find them."
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.

He went on to discuss
> strain heterogeneity, the fact that the test kits only test for a
> limited number of them, host immune evasion, immune modulation, etc.

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. 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.
All of the above has always been a problem with vaccines to many bacteria
and viruses and parasites. Just finding a vaccine against malaria is a
problem. The same reason applies with immune evasion, modulation etc. That's
nothing new. Look at the flu virus and mutation.
There is nothing wrong with the test only with people trying to understand
it's use and limitations.

Here's the FDA position and maybe he wrote it. As I have touched on it
without really searching or looking into it specifically.

Lyme Disease Test Kits: Potential for Misdiagnosis

http://www.fda.gov/medbull/summer99/Lyme.html

The tests should be used only to support a clinical diagnosis of Lyme
disease and should never be the primary basis for making diagnostic or
treatment decisions. Diagnosis should be based on a patient history, which
includes symptoms and exposure to the tick vector and physical findings. The
most definitive diagnostic procedure is biopsy and isolation of B.
burgdorferi in culture.



Several factors contribute to the limitations of using ELISA, IFA, or
Western blot tests for supporting a diagnosis of Lyme disease. The stage of
disease in which the specimen was taken is critical. Many patients with
active or recent infections do not have detectable anti-Bb in a single
specimen. This happens because such antibodies often develop after
manifestations of early infection or because detectable anti-Bb may diminish
or never develop in patients treated with antibiotics. Further, a positive
test result can be true evidence of previous infection with B. burgdorferi
and unrelated to a current illness. Assays for anti-Bb may yield
false-positive results, because antibodies to B. burgdorferiantigens may
cross react with antigens associated with autoimmune diseases or from
infection with other spirochetes, rickettsia, ehrlichia, or other bacteria
such as Helicobacter pylori. (6,7)

In summary, serologic testing is not useful early in the course of Lyme
disease, because of the low sensitivity of tests in early disease. Serologic
testing may be more useful in later disease at which time sensitivity and
specificity of the test is improved.



>
> > You really have to be careful when saying someone has something when you
> > can't see evidence for it.
> >
> >
>
> I never said you have TBDs. If you go back and read my posts, you'll see
> I suggested it as something that could be causing your symptoms, among
> all the possibilities. I merely addressed your misinformed beliefs
> about the rule out value of serology.

Serology has value. It is not always reliable because of biological false
positives and negatives. So the warning is appropriate.

>
> Good luck with your illness; you can do or not do whatever you choose
> with the information I've provided.
>
> Susan

I am not saying he does or doesn't have anything. It is dependent on the
area of the country he's in and the history follow up testing.
Most of the TBD are diagnosed on history.
If the person were taking statins then you would have competition in that
causing all the symptoms. If the person were overweight then it would be
because of hypothyroidism and they would be wanting thyroid hormone even
though the TSH was normal because according to all these people there is no
test and now way to really rule it out.
I gave some positive finding that might point in that direction. Leukopenia,
which is seen in TBD, a false positive ANA and I would seek others like an
RF and PCR and liver enzymes.


.

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