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Dear Ticker,

It's been a few weeks since I last sent a thread to anybody because I
have been trying to get all of my ducks in order so I can maybe get
somebody to treat me. I went for another Lyme test and it came back
differently this time. I guess the lab has changed the way they configure
the results. Anyway the first test that I had done on 7/23/02 came back
negative. I'm not sure how they determine how you are in one category
or another because the categories were:
< OR = 0.99 NEGATIVE
1.00 - 1.19 EQUIVOCAL
> OR = 1.20 POSITIVE
My test was a IGG, IGM Western Blot and the EIA value said it was <1.00.
What I don't understand is why wasn't it just listed as <.99. Is there a
value between <1.00 and <.99?
My primary care physycian said it could still be Lyme so he did another
test on 9/14/04 and this time it came back with band results not a
number like the last one even though the nurse said she ordered the same
tests. The results were:
B. BURGDORFERI AB (IGG), NEGATIVE
18 KD (IGG) BAND NON-REACTIVE
23 KD (IGG) BAND NON-REACTIVE
28 KD (IGG) BAND NON-REACTIVE
30 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND NON-REACTIVE
41 KD (IGG) BAND NON-REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND NON_REACTIVE
66 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
It said you need 5 or more of the 10 significant bands to be considered
positive per the 2nd conference on Lyme Disease, Dearborn, Mi., 1994.

B>BURGDORFERI AB (IGM), NEGATIVE
23 KD (IGM) BAND REACTIVE (abn:A)
39 KD (IGM) BAND NON-REACTIVE
41 KD (IGM) BAND NON-REACTIVE
It said you need 2 (or more) of the 3 significant bands to be considered
positive for specific antibody to B. BURGDORGERI. All this from the above
mentioned conference.

As I said they are labeling this as negative because I don't fit the criteria
and what I don't understand is why it would have that 1 reactive band.
Does that make it questionable or does that pertain to some other problem?
Was this test only for Lyme or does it show other potential problems? I'm
just not that medically literate to know the answers.

My primary care doctor did think that I should see an infectious disease
doctor though because I'm kind of in a gray area and clinically everything
points to possible Lyme. I have contacted one in Plano ,Texas and sent
all my paperwork to him and he is reviewing it now and I should hear some-
thing today. I'm not sure he can help if he isn't convinced it's Lyme. My
primary care doctor 2 years ago had given me Doxy when he did the test
and I was just coming off those massive doses of steroids that my neurologist had given me so I didn't take them right away and then when the test came back negative I just put them in the medicine cabinet. I joked
with my doctor's nurse and told her that if I can't get some results with the
infectious disease doctor then I'm just going to take the Doxy he gave me
and if I'm feeling better he's just going to have to give me more to get rid
of this monster. She laughed and said she would run that past him. I really
think he would give me more if he saw an improvement. The question I have
is will oral Doxy be sufficient after dealing with this for 3 1/2 years or must
I be on the intravenous? What he gave me was :
Doxycycline 100 mg caps to be taken 2 times a day for 4 weeks
After reading your threads I realize this is probably not long enough so I
will need to get him to extend it but for how long? And again will the Doxy
work at this stage of the game if in fact it is Lyme. I think you said some-
thing one time about taking medication even for a while after the symptoms
are gone or you stop having herx problems. By the way how long does a
herx problem last. Does it come back about every 4 weeks until you are
rid of this monster or is it continuous. These questions may be old hat to
everybody on the website but I'm a novice at learning all about Lyme. You
know I have mixed emotions about this being Lyme but at least I will feel
like I'm finally doing something to get my life back on track even if it takes
some time. If you don't think the Doxy will work do you know of any LLMD's
near the Dallas area. To be honest with you I don't care what kind of doctor
I end up with as long as he is willing to go the full route. By the way if I
do end up going the Doxy route, what is the normal (if there is such a word
for this) time in which you will at least feel like you are making even the smallest amount of progress. Maybe this just depends on the individual?
I just want to know that I should feel some improvement so that I'm sure
I am treating the right problem, even if it is just baby steps!

By the way I also sent the doctor my spinal tap results from 2 years ago
that I had never seen and the only thing strange was a high red blood count.
The oligo bands they were looking for were ABSENT and the VDRL was NON-
REACTIVE. The Myelin Basic protein was 0.9 and should be <1.5. It really
makes me angry when I see this because what were they basing there
claim on that I had MS. No lesions either. Aren't neurologists trained in
Lyme and other possible diseases? I guess not!

I guess that's all for now. I eagerly await your response. As a side note,
I have promised myself that by the first of the year I will be doing better.
My son is in Baghdad and is due home in January. It would be so nice to
come home to a normal mother ( if there is such a thing). This right now is my goal, keep your fingers crossed for him and for me. THANKS!

BETTERDAYSFORME

*By the way, a quick question. The last time I wrote, I didn't want to leave
anybody out so I addressed my thread to a few of you so you could keep
up with me. Does this work or must I address you all individually?





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