Re: New here questions on lyme and other

On Feb 19, 11:43 am, cowabungabartnewsgrouplea...@xxxxxxxxx wrote:
up on topic interesting discussion

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.


Hi there.

I had the same thought, and dismissed the idea of Lyme several years
ago. Never entered my mind again. I was from NJ, and to be honest, I
didn't know anyone who had strange neuro involvement, either. My dog
had a seizure when he had it, but not being truly lyme literate (-who
is?), I didn't know the tremors and cataplexy and so forth were part
of Lyme.


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).

Ahh...but in some people, at least early on, the symptoms can be self-
resolving...for a time. In my experience...and who knows WHAT I really
have going on...what strains, co-infections, etc...I had time periods
where I was bad and in pain and times I was rather well. I know you
were worried in this thread about being flamed for saying Kathleen
seemed smart. I don't know that you are in much danger of being flamed
for making a comment such as that. I think the biggest problem you'll
run into is if you don't agree that being hateful is wrong and not the
way to handle the situation. I always say, I would love to have a
conversation with Kathleen about Lyme. I just don't like the hate-
speech. I don't blame these guys for not condoning the spam, and until
and unless I am able to come up with an alternative to how they handle
it, I've learned I'll just keep my mouth shut about what's wrong or
right about the situation. The one thing I can say about Kathleen's
thoughts on Lyme...she mentions over and over (me paraphrasing) about
the OSPs changing and adapting. If she is right, that could explain a
lot of things. Your body could produce antibodies to beat the suckers
into submission and under control, only for them to change, causing a
relapse.

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).


I didn't have an IGENEX test done. Mine was good old fashioned lab
corp...lol. And some other lab in NJ. BUT have heard of them, ad
nauseam. I'd like to have one of those central florida lab tests...just
to see.

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

I didn't have a spinal tap. The neurologist wanted to do one but I was
chicken. I have a friend who does IVIG for Primary Immune Deficiency.
Seems to be helping her, and only recently started treatments, but she
will likely have to have this for the rest of her life. Its indicated
for ID, but I would think that most insurance companies would think
IVIG in Lyme to be experimental at best.

Not being a scientist, but a photographer turned computer geek, I
don't know if I have a lot to offer other than my personal
experiences. However, I'm pretty good about being able to FIND
information even if I don't know it myself!

Hope you art feeling better!
.

Relevant Pages

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