LymeNet Flash: Seen LLMD today, WB results

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Posted by V. Owens (Member # 5380) on :

Hi all;

Went to see LLMD today he had recived results
from WB. test from IGX. When we asked what the results were he said " well you have LD.
not just a little a lot, I have never seen a test this high, its the highest I have ever
seen" . Repeated word for word.

The lyme IGG WB. came back negative with only
band 41 +/-, which he said showes vic was infected at one time.

It is the IGM WB that is so high, as follows.

18 +/-
22-
23-25 +++
28 +
30 +/-
31 ++
34 +/-
37 -
39 +
41 +/-
45 +
58 +/-
66 +
73 -
83 -
93 +/-

Dr. S in Mi. said that is a lot of LD, I knew that all along, well from back in 96 but
I`m just a lonnng haired hippy type, what
would I know.

But now we know for sure no more " its all in
your head" ****. All of our doubts are gone
or hopes as the case may be, yes even I the
care giver of the love of my life did wonder
every new and then " what is going on" is it real. But after all i am human.

Vic is crying more today, it dawned on me during the 2 1/2 hr. ride home that she has
been in denile about it the last 2 wks. maby
didnt want to know for sure, it was like a slap in the face to her, must be why it has been so hard to get her to take her meds. of late. It has been a battle, i think she will
get back on track now, I hope. I wish she would try to play on this here puter. thing
and talk to some of you guys but she wont, I will be here, thou need your help from time to time.

This should get Vic`s Dr. here in Alpena back
on the band wagon so to speak. And with a little help from the big guy up stairs will make
another LLMD, she would make a good one I think, she has seen some wild stuff happen to
Vic and could not find out why. Vic has had some of the more uncommen syptoms. If the Md.
gets into it she will be good at it. Wish us
luck for the LD people down the road, oh pray
also if you would like, thanks.

I am getting packets of info togeather to give to all the Mds. who did not belive, I will put this test result on top, who knows
maby more will belive, then we would just have to get then to treat properly. I will include Dr. Bs. guide lines and some stuff
on syptoms.

Oh yah, Vic was off abx. for 34 days when blood for WB was drawn, she had been on biaxin 1000 mg/day for sinus & kidny infection, not LD, she had a herx. that put fear in my heart and we stopped the biaxin.
I remember reading about not haveing WB to soon after abx. somewhere on this board, so any way 34 days worked for us.

Thats all folks, a sparkle in your eye, a smile on your face, down the road.

Steve & Vic

Good day,

PS. Vic said sad face on this post because I`m sad.

[This message has been edited by V. Owens (edited 05 May 2004).]

Posted by Beverly (Member # 1271) on :

I'm so sorry Vic is sad today, coming out of denial is hard. I have been throuh the denial stuff too...I cried for weeks at each and every step.

I guess once you get through the denail there comes a peace of knowing what the heck has been wrong with you for so long. And you are not crazy after all.

Good luck to you both, keep us posted.

Beverly

Posted by gopats (Member # 5218) on :

Well I hope Vic will cheer up a little. Now she has a shot at getting better with everyone on the band wagon. I've been taking L-Theanine to help with the sadness and anxiety and it has really helped me. It is not that expensive and it might be worth a shot. Most of my symptoms tend to be central nervous system so I have trouble with seizures, dizziness, pain, breathing, tremors, headaches, heaviness in limbs - so I do tend to have some of the more unusual symptoms and this really makes me feel helpless and I often ask myself, is this going to ever get any better. Well I've had a pretty good few weeks except for a cold and I haven't done that in so long.

Take care.

Anything I could do to cheer Vic up, let me know.

Posted by Lymetoo (Member # 743) on :

WOW....when I saw the list [before I really read what you wrote] I thought....that's one of the worst I've seen! BUT, the good news is that it could also mean that her immune system is still working.

Many of us don't even have positive [by CDC standards] WB's because our immune systems are so down that they couldn't muster much of a response. Some of the sickest people are those with negative WB's.

That said, she's going to feel like doo-doo for quite a long time, I imagine. And keep a check on those herxes. Don't let her herx too hard, OK? My LLMD [and many others now do the same] says to cut back on the dose when having a strong herx.

You can end up losing ground if you herx too hard. Or you could end up in the hospital. So tell her to go easy, OK?

She's now on her way to WELLNESS!!!

Hi Lymie Vic!! Welcome to our Elite Club!

------------------
oops!
Lymetutu

[This message has been edited by Lymetoo (edited 06 May 2004).]

Posted by V. Owens (Member # 5380) on :

Good morning everyone

We went to bed not to long after i posted last night, long and stressful day for us.
Made up a salt bath with lavender it made her feel a little better. Every inch of her
body hurt, I could not even hold her and she
needed to be held.

Beverly; the denial will pass, Vic is a strong lady, just needs time to sort everything out, seems to take a little longer
with LD.

gopats; I will check into the L-theanine, I
am glad to hear you have had a few good weeks
we wish you many more.

Lymetutu; I will watch the herx. close, stopped the meds. befor we can do it again
if needed. And I see your little Icons. are
working again ( the dropping of the nickers )
thay allwise make me smile reminds me of
hmmmmmm - well never mind, another story,
maby someday.

Thanks everyone, better days to all.

A smile on your face, a sparkle in your eye,
down the road,
Happiness comes when the saddness is gone.

Steve & Vic

Posted by treepatrol (Member # 4117) on :

I wish I could say something that would make this better but I cant.
Forwarned is forarmed it is going to be one rough and bumpy road ups and downs and I mean downs sicker better then sicker but you will get through it whatever you do DONT GIVE UP hang in there.

I know when I got my test results back I was relieved because for 12 freakin years I had been dealing with a undiagnosed lyme problem because of the dipsh*ts around here or there ability to recognise this disease.
I was so thankful to begin treatment.

Anyhow I wish you a very swift and permanent recovery

Posted by V. Owens (Member # 5380) on :

quote:
Originally posted by treepatrol:
I wish I could say something that would make this better but I cant.
Forwarned is forarmed it is going to be one rough and bumpy road ups and downs and I mean downs sicker better then sicker but you will get through it whatever you do DONT GIVE UP hang in there.
I know when I got my test results back I was relieved because for 12 freakin years I had been dealing with a undiagnosed lyme problem because of the dipsh*ts around here or there ability to recognise this disease.
I was so thankful to begin treatment.
Anyhow I wish you a very swift and permanent recovery

Treepatrol; thanks i am relieved, Vic is not
, I know we now have the amo. we need to get
things going right, and more of the help we need from the loco Mds. around here, and who
knows we just might make a LLMD. better days to you.

Posted by riversinger (Member # 4851) on :

I remember when I got my test results. I'd already been very sick for ten years. I'd been researching Lyme for six months, and was convinced I had it, but didn't expect a positive test, because of all I heard about the inaccuracy of the tests.

When the doctor told me my tests were positive, I became deeply depressed. I knew it meant that there was something to fight, but it also meant I was really sick, not just something I could easily throw off. It's a shock.

The number of bands showing on Vic's test IS a sign that her immune system is still active in fighting the borrelia, which is a good sign. I agree with Lymetoo, those who are seronegative may have a harder time.

Tell Vic, if it helps, that even if she doesn't want to get on the computer herself, she has a lot of people behind her. If it doesn't help, don't tell her, but we're still all here!