Re: a serious question about lyme diagnosis

I respect your views. but for me, for whatever reason, IM magnesium is
an amazingly effective adjuvant. either {a} the Bb infection is
directly responsible or {b} it, as you say, could have sparked another
condition. but those symptoms...the muscle twitching and cramping...are
almost completely absent now...and when I stop taking magnesium, they
return within a period of weeks. it's a weird deal. and don't get me
wrong, I don't take it all the time...maybe once every 3-4 weeks. oral
Mg doesn't work, I tried that. and these symptoms popped up in
conjunction with the other worse symptoms...the neuropsychiatric stuff.
{which had explosive onset}...so there's a powerful tendency on my part
to attribute them both to the same ultimate cause.

the problem for me when trying to relate to docs...especially
non-LLMDs...is that it took so long to get people to listen to me - you
know, they just think you're a crazy hypochondriac due to the long
history of fruitless medical consults...and the time lapse between
onset and diagnosis is so long, it becomes impossible to establish
anything in the objective realm. I know what happened, but that doesn't
mean squat in science.

when we talk about other conditions popping up and being attributed to
lyme, I understand that perspective...the danger in attributing
everything to lyme disease. I am very careful and always have been in
this regard. because of the nature of my experiences...combined with my
paranoia...we have ruled out tons of pathologies aside from lyme,
including very rare genetic metabolic diseases...actually, I don't know
if you recognize the book...but there is an amazing 3-volume
text...inherited metabolic diseases of man...and I've been ruled out of
most of those bizarre rare genetic conditions, either through testing
or clinical observation, etc. been tested for amyloid, wilson's,
hemochromatosis, etc.

sometimes those diseases just spontaneously occur as opposed to any
pattern of inheritance...wilson's disease notorious in this regard.

actually there IS an inherited genetic disease in my family, a real bad
protein C deficiency which causes my sister among others to take
anticoagulants , but I tested negative for that one. it's actually sort
of interesting...on one side of the family, many of the deaths have
been from stroke, embolism, etc.

the diagnosis of adult-onset metachromatic leukodystrophy {which
causes an insidious long duration neuropsychiatric syndrome very
similar in terms of symptomology to general paresis and also what is
seen in neurolyme} was ruled out based on a lack of symmetry in MRI
white matter lesions. in MLD, that's what they eventually see,
symmetrical white matter disease in both hemispheres...usually starting
out in the frontal lobes if I recall accurately.

I have had some important health problems which I can't directly
relate to lyme. I think in some cases they might be related OR more
importantly are aggravated by lyme but there's no way of proving that
until autopsy if at all. I've got a couple of real unusual issues going
on...and no sane doc is going to just start using you as a research
monkey, even though I'd be more than happy to sign the documents
allowing someone to biopsy my liver, eyeball, brain, etc without fear
of legal recourse if I dropped dead.

after my experiences with lyme and the medical profession...I realize
that ultimately my health is my responsibility...you can't expect the
average overworked doctor to be able to recognize unusual presentations
of disease. and they're not required to do so, according to the
accepted standards usually applied to malpractice cases.

lol, yeah I'll talk to a neuro. but first I have to find a new one
{locally that is}. my last oklahoma-based neuro left for greener
pastures, as they say. and this is a tense subject {involving lyme} so
I need to carefully search for someone w/ an open mind. hell, maybe I
shouldn't even mention lyme and just report the symptoms and let them
figure it out. probably would end up with an MS dx or peripheral
neuropathy.



the 3rd Man wrote:
McSweegan is a good guy wrote:


do you take magnesium?

Took it daily for several years. Have stopped recently because
thankfully, I rarely experience any of that stuff anymore (seems to
come back a little when very tired though)...and my personal philosophy
is to not put anything in my body unless I absolutely have to. I am not
one of these people who is willing to start taking this supplement or
that one...and I took myself off antibiotics as soon as I thought it
was apparent that they were no longer having an effect.

I remember reading where Weisman noted this happens (we are really NOT
the same person, I suspect that you understand that)...and I agree. At
some point, you see symptoms come and go without regard to the
antibiotics...at least that's where I am.

And so, my personal outlook is to try to keep an open mind as to what
is driving the longterm symptoms. Especially the possibility that one
can easily make the mistake of thinking that once you've had Lyme...all
symptoms consistent with that are due to Lyme. What effect does a
longterm infectious process have on the body? In awakening other
illness, for instance?

(I think the IDSA approach is dreadfully wrong...in particular, as to
the length of the prescribed "appropriate therapy"...but people need to
remember that they really are "guidelines").

My personal belief...both sides are probably substantially wrong.
Everyone sees things through the filter of their own personal
experience with the disease.

I'll try to arrange a nerve conduction study for myself, and then I'll
be in a better position to comment on the excruciating nature...

LOL. Well, unless you are an SM freak by nature, I wouldn't. (and then,
to be fair...you would have to use the same guy who did my second one).
Really, that blurb, to be accurate, should read: "The patient will
experience little pain BEFORE the test".

Afterwards, I felt like I had played the worst football game of my
life. Just beaten up.


But I would suggest that what you really want to do is to talk to a
neuro about what you are experiencing.

.

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