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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:
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.

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!


*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?
Dear Ticker,

I finally have some news for you. My last e-mail let you know that I had an
appointment with an infectious disease doctor and he told his nurse he could help me after reviewing all the stuff I sent him about my case. When I got
there the first thing he said was he didn't believe that I had Lyme. Well you could have knocked me over with a feather and his nurse was totally embarassed too. He did some base line type blood work and said he really didn't think the insurance would pay because only the one band came back positive but he would see. I got a call 2 weeks later that they had approved
the meds. Was I surprised! I really thought he would sabotage the paperwork to the insurance because of his feelings. Anyway this past Wednesday I had the pic-line put in and then went to his office for my first dose because they have an infusion room and an on staff pharmacist there.
They did the first dose and showed me how to do it at home. I had to go
back the next day so they could change out the bandage and give me a weeks worth of meds. I am to go back every Wednesday for blood work
and to get the next weeks meds. He put in for at least 6 weeks just to see
if it helps and then we go from there. I told his nurse that I didn't want him to do this just because I wanted it but she said she really thinks he has
feelings it may be Lyme because he would not be doing this if he was sure it wasn't Lyme. I sure hope I start to see some improvement before the six
weeks is up. When I got up Friday (after 2 days of meds) I can't say that I felt better but something felt different in my legs. I can't really put a finger on it but they didn't seem as tight or something like that. I got real excited but later in the day and today it was the same old thing I have been experiencing for almost 4 years. I know in my heart it wouldn't work that quickly but I got real excited and now I'm just saying to myself this will take time. The nurse and pharmacist say at least 2 - 3 weeks before I see anything. Does this sound right to you? So far no real problems with the meds other than diarrhea but that I can tolerate. I am taking the acidophilus
to keep the good bacteria functioning. One thing I have noticed is that I get real limp (no energy) after a dose. Is this normal? I also told them that I feel like my glands are swollen but it is real funny that my throat hurts more in the front than the sides a few hours after the meds. This feeling does go away after about 6 hours. They thought I might have drainage or am getting a cold. They said this was not the throat closing problem because I would definitely know if that was happening to me. By the way the meds I'm taking is Rocephin 2g. The nurse that changed my dressing on the second day sounded like that was a lot. I wonder why he would give me a high dose if he didn't think it was Lyme. I will say that he said the Doxy would not get it if I had been sick for so long and that it was neurological now; which it definitely is at this point. I wish
I knew when I could expect anything in the way of permanent change or even just change I could identify so
that I didn't feel as though I am doing this for nothing. Actually I don't feel this is for nothing but it is a big commitment for a test that came back negative. I guess I just have to hope for the best and if it doesn't do the trick at least I've ruled out Lyme. I love his nurse and pharmacist because they insist I'm going to be there "miracle child" (at the age of 56!) and make the doctor not always have a black or white attitude. I hope they are right. If anybody out there can give me some feedback about the amount of time it took them to get better (even just a little) and what to look for in the process please let me know. Say a prayer for me that it is Lyme and I'm finally on the right track! Even with insurance it will be an expensive thing to do but well worth the money if it gets me better. I really don't want to have negative thoughts because that doesn't help and I do know you can have Lyme without a positive test but I'm still doing a lot of praying! I even enlisted the doctor and his staff who put the pic-line in to pray for Lyme. He couldn't believe they were trying to tell me that I had MS at the age of 56, he said it was highly unlikely to occur that late in life. Isn't it terrible that you pray for a disease! But at least it would finally put me on the road to recovery. I apologize for my rambling but after almost 4 years I can't help it. Thanks again for your help and prayers and I'll keep you posted with my "progress". See I do have a positive outlook!!!

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