Re: New here questions on lyme and other

On Feb 18, 7:57 pm, Needsomeinput <needrealhel...@xxxxxxxxx> wrote:
I got sick about a year and half ago, literally from one week to the
next, and since my symptoms were so bizarre (neurological) I thought I
it could've been lyme. I used to live in CT so I figured it was
possible (had just recently move to the west coast). I joined the
Lymenet but quit after realizing it was just sort of a cult, you
couldn't even bring scientific facts to the discussion, otherwise you
were attacked or your posts were deleted. I have followed some of the
threads in this group and even though is filled with a lot of juvenile
behavior, I've also noted that there are smart people contributing.

I have a background in science and I knew that a lot that was said
about elisa , wb, IFA was bogus and the specialized labs (at lymenet).
Even though I decided to try antibiotics just in case it was lyme or
other bacteria causing immune dysfunction. I was on several orals (for
about 2 months) but went on rocephin and discontinued it (myself)
after a month of no effects.

I recovered probably up to 90% after probably 4 or 5 months on
different supplements and rest ( I was bed bound for a while and had
to be taken care for).

Anyway, I was found to have babesia through IGenex but I'm not sure if
I trust them (I was treated for that as well). The were using sort of
a novel method through inoculation of hamsters (I can give more
details).

My spinal tap of just a few weeks age showed elevated proteins (all
the Dr. didn't have the presence of mind of electrophoresis) also a
very abnormal % of the WBC differential. But based on my symptoms and
history no Dr. has been able to put a diagnosis together. As an
experimental treatment the Neuro wants to try IVIG (is however very
expensive)

Can you guys comment on that? any help is appreciated

thanks

I know some very smart MD persons who want to try IVIG on their
neuroLyme patients.
I had 3.5 months of IV and it got me 100% better.
Keep trying different things. It is sound and reasonable to see that
if your immune system
is screwed up, some extra IVIG might be beneficial.

And you're 100% right about LymeNet, but remember that Pat Smith got
kicked
off ILADS board for the same reason. They don't need the baggage of
someone
who is not a scientist, and who does what Pat does, which is what you
describe:
keeping the little airheads around, worshipping Pat, and never getting
anything
accomplished, like the education of patients.

Kathleen- solver of the Lyme crimes.

http://www.actionlyme.org
.

Relevant Pages

  • Re: New here questions on lyme and other
    ... and since my symptoms were so bizarre I thought I ... it could've been lyme. ... neuroLyme patients. ... some extra IVIG might be beneficial. ...
    (sci.med.diseases.lyme)
  • Re: New here questions on lyme and other
    ... and since my symptoms were so bizarre I thought I ... it could've been lyme. ... neuroLyme patients. ... And you're 100% right about LymeNet, but remember that Pat Smith got ...
    (sci.med.diseases.lyme)
  • Newly diagnosed & needing advice/support
    ... but she told me she was diagnosing Lyme based on my ... history and symptoms alone since the test were unreliable. ... I live in east TN and cannot find a doctor who treats Lyme disease. ...
    (sci.med.diseases.lyme)
  • Re: New here questions on lyme and other
    ... Not all symptoms are ulcer like. ... Some patients have frank fulminant ... Lyme can lay dormant or latent like syphylis. ... shortly after treatment particularly using rocephin a bacteriacidal ...
    (sci.med.diseases.lyme)
  • Re: THE THREE AMIGOS RETURN
    ... I guess...now that's Lyme therapy! ... If you start, for instance, a new antibiotic just as your symptoms ... With me...I was recently off antibiotics for about 3-4 months. ... opinions...is just plain stupid. ...
    (sci.med.diseases.lyme)
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