Been gone for a while, lost net provider and
now have new one, back on line about a wk.
now. Have updated profile and included email
this time.
Anyway / to vent--- where to start. In my last post there was good news had been to LLMD, " looks like LD to me " and started
treatment. Lots of blood work, & WB was one
anyway, we wanted to get blood drawen up here
in Alpena where we live we go to an clinic
here were we pay based on our income / sliding fee, and due to the fact that things
are slow in this little town, for us self-employed builders, and our med. expenes are so high we end up paying at the bottom of the scale. To bad the MD`s around here DO_ NOT BELIVE IN LD around here, life would be easier and ceaper for us.
So we went to our loco Md. to have blood work
done, had kit from IGX, ALL READY TO GO spin
the blood, place in box seal and send, simple
RIGHT, WRONG .
This is what happened, everything seemed to be fine, showed all the paperwork from LLMD
to loco Dr. and explained everything that had
taken place at LLMDs. She said she would do
blood draw for us, so we waited & waited and
finely I went to see what was taking so long
THAY WERE CHANGING ALL THE PAPER WORK--GOING TO SEND WB TO MAYO , seems LOCO`s have deal
with mayo, kiss my a''. MAD almost lost it,
but did not, felt like I used to in the lod days when something like this happened, push
back and push hard, but lossing my temper would not help my wife now would it so I kept
the bitterness in my gut where it was.
Was going to go back down state to LLMD and
get it done, a nurse friend said call the lab at the hospitle. So i did, guess what,
walk in we will do it and thay did, only cost 13.00, it even got to IGX, donot have results yet but got patient statment.
Gee wizz, still do not understand this sh#t
and more then likly never will. Guess we can NOT count on help from them at our clinic.
UPDATE
MINO, beats Vic up bad herx from hell, did not start until after blood for WB was taken.
Took about two days, and yes tex mom I did do as you said and started out slow on her dose to try to build up to dayly dose, we are now doing one day one day off, hope vic`s
herx`s will not be so bad soon.
She was starting to loss her hearing in her left ear, that seems to be getting better,
and the headaches are less now and less pressure, reading the post about " all mino
bro & sis report here" was a big help to
better understand what is happening to my wife. The joint, body muscle & neck pain is
almost more then she can bear sometimes, I so wish I could take her pain for her.
She gets real bed mood swings & depression
and cries alot now, more then befor, she said
she dont care anymore sick of being sick and
sick of taking hand fulls of pills all day every day, and she thinks she will never getbetter, I know she will, some days are so hard for her. And no i will not give up & will not let her give up eather, its not in me. I love her to much, I was not there for
her once when she needed me 22 yrs. ago it
will not happen again. We are both just so tried of it and sometimes it seems like it is nevr going to end, even though in my heart
i know it will. She is such a good lady i wonder sometimes why her. She takes care of
mentaly disabled adults, that is her job and
I have heard her say lots of times that she likes her job, not enough people like that in
our world today, and she changed me made me see that there is a better way in life, she
is right.
Vic`s LOCO Md. seems to blame me for vic`s
sickness, here is a new one for you, when reading vic`s med recordes from her Md. I
came across this, DEPENDENT ON CONTROLING
HUSBEND, refured to head sheank, what a shame
i guess when thay cant find a easy dx, thay must make oneup, hurt me bad, and its in black & white forever.
well thanks for listening, I feel better a
little, better days to all.
Vic says HI.
Steve & Vic
Asparkle in your eye, a smile on your face,
down the road.
You need to write up a treatment record and let your doc see it; something like "Wife dependant on nincompoop MD who should consult therapist for recommended career change." Don't let it get you down. Throw her in the Alligator pit.
Hang in there, and do something good for yourself. This is tough stuff. You're doing a wonderful job now, even if you messed up 2 decades ago! And didn't we all. I rx reruns of Mr. Ed; a warm bath; an Ed McManus book; and settling in to watch African Queen with a bowl of popcorn.
Best of luck to you both.
[This message has been edited by minoucat (edited 27 April 2004).]
Goodness, you guys are really finding out fast what so many of us have had to deal with...I am so sorry for this!
There just are NO easy answers with this illness, and no quick and painless cures. I wish it were otherwise for all of us...
I so admire your dedication and strong fortitude...you are to be commended on all that you do for your beloved. This is NOT a common occurrence, to have a spouse as devoted as you are...so please, take a bow...you deserve a standing ovation!
Vic must be one amazing woman to have snagged you...and by your description of her past self, it sounds as if she is.
Please, try to remember that this illness causes SO many changes in our bodies, minds, and spirits.
The lyme patient who deals with this on a daily basis gets confused, frustrated, and sometimes depressed...it is no wonder why so many marriages crumble when the other partner can't figure out what is going on with us, when we can't even figure it out or control it ourselves!
I am pleased that you feel that you can come here to vent with us. I would also like to add that many seek the professional assistance of a therapist to add to their med team. If it ever gets beyond simple `sometimes' depression for either one of you...I would highly recommend you seeking someone who can speak with you both about coping with a chronic illness.
Hang in there Steve...you are doing great so far!
All my best to you and yours,
Melanie
------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
So sorry you are having to fight the system as well as Vic's illness.
It's enough just dealing with all that this disease entails, without being outright lied to. And then to be blamed for why Vic is sick? So it's not only all in HER head, it's all in YOURS too?
I totally understand how Vic is feeling. this isn't one of those nice illnesses where they figure it out, give you a drug and presto! changeo! you're better.
Some days it's hard to face that pile of pills.
Hang in there, both of you. I hope you each have some pleasureable thing that you can still enjoy. It's important to remember to take time for that, even if it's just a movie, some flowers blooming in the spring, or a scented bath. Whatever is possible, you both need it, as well as the discipline of Vic's protocol.
You might want to check out the threads over in Medical talking about a new treatment that may ease herxing and reduce pain. It's mostly speculation as to how it would work for Lyme disease, but it sounds good.
I know, I know, I said to have fun, but you gotta keep learning, too! 
Dr. Trevor Marshall's work with Benicar
That's all I have time for right now....but you are doing a WONDERFUL job! Continue that "controlling"! Minoucat hit it right on the head!
------------------
oops!
Lymetutu
Hi guys, thanks for the support, we needed it
I almost posted all of the bull a few weeks ago when it happened but i was to worked up
and would have went on & on & on as I am
prone to do when i am mad so I waited.
We went for a long ride just after I posted
yesterday, up over the Big Mac. bridge its
5 miles long and connects the 2 parts of Mi.
we had high winds - never will get used to
driving over that bridge with high winds,
darn thing moves & sways in the wind brrrr
chills in the spine.
Maby to long of a ride, Vic looked a little rough when we got home, we had to get out
and its been a while since we were up there
so the ride was nice. There is a oldies radio
station up here thay play stuff from the 60s & 70s lots of stuff we had not heard in a while. Nice to get out for a change.
No alligator pit yet for loco Md. there is still hope, I think she has stopped reading
what i give her to read, plan on taking our
log in next time to show how the reaction
to abx is going even a blind person should be able to see that. I hope to change her mind she did liston and help at first and we will need someone who belives for the LD
people down the road, will keep trying.
There are some problmes with going to a
therapist;
1. Vic works for mentel health, this is a
small town, she does not want it talked
about.
2. Md`s have said it is all in her head and
she feels that is the only way thay will
look at it.
3. I am the one making her sick - that is to
say I am planting the symptoms in her head
and due to the fact i am soooo controling
she has them JUST TO PLEASE ME. I wonder
what thay would think if one of them were
there when one of the sharp pains behind
her eyes drive her to her knees even if we
are out in public, more then likly " wow
is she a good pretender" oh well, on with
life.
I have been all over medical, every time i am
on line, Dr. Marshall`s work work with ACE inhibitors sounds good, wouldnt it be wonderfull if there was something that would
make the herx easyer to bear for those who
go through it.
Thing is Vic has low BP has had for years,
plan on talking to llmd about it on the 5th. of may.
Riversinger; WATCHING FLOWERS IN THE SPRING
you bet young lady, its allmost time to get out there on our hands & knees. You guys
should see our yard in full color, best on the block, although the coulpe across the street are gaining fast. Hmmmmm maby we should stop giving them so many starts & seeds, no the block looks nicer, I know give
them to everyone, we have tons of seeds from
about 40 diff. flowers, save them every year. I think i will post in what can you gave away and give away some seeds after all
that is why we save them - to help brigthen
up othres lifes, why not you guys, bright flowers = brighter days. have to make up a list. Vic has a wonderfull green thumb, and
sometimes when we work in our yard the old
sparkle will return to her eyes, a wonderfull
thing.
Lymetoo, its not " controlling " its
candocaringfor or something like that it sounds better to me any way.
Thanks to all for your support,
love from us
Steve & Vic
A sparkle in your eye, a smile on your face,
down the road
[This message has been edited by V. Owens (edited 28 April 2004).]
Not that I am suggesting this.....but, I have heard of people perusing their charts while the Doc is out......and then things are reversed FOREVER removed.
hmmmmmmmmmmmmmmm
Good Luck My Friend.
Trout 
PS>>>>I like you.
I'll just have to imagine how beautiful your yard is! Even that makes me happy.
Trout, I like how your mind works.
quote:
Originally posted by troutscout:
Vic,Not that I am suggesting this.....but, I have heard of people perusing their charts while the Doc is out......and then things are reversed FOREVER removed.
hmmmmmmmmmmmmmmm
Good Luck My Friend.
Trout
PS>>>>I like you.
Good day Trout
Of course I would never suggest that you would suggest anything of the sort.
Food for thought and we all know food for thought is one of the good things in life,
don`t we now.
Thanks for the meal.
A sparkle in your eye when on the water.
PS Ever fish for the BIG trout of the great lakes. Some day I will tell the tail of
the first time I took Vic out- 3 to 5 ft.
waves but lots of fish, hard part was staying on your feet.
quote:
Originally posted by riversinger:
Ooooh, too bad! I just moved to a place with no yard (or yardwork), so I have no room for seedlings.I'll just have to imagine how beautiful your yard is! Even that makes me happy.
Trout, I like how your mind works.
Hi river
If I ever learn how to use this hi-falution
dige-cam thingy we gots us here I will send
or post or something a pic.
At that point you will have a pic of a 1000
colors
A sparkle in your eye down the road lady.
Steve
Anyway, I was going to say...please read my Mileposts post. You will probably have to do a search...or better yet have Melanie do it. She can find it quick-- anyway, it might help your wife a little...it was a story about my daughter, and almost giving up, and where we are now.
Its a slow process and you unfortunately are at the beginning of the process. Hopes and prayers for you and your wife, that things will get better quickly.
(((((HUGSSssssss))))))))
quote:
Originally posted by Lishs mom:
Wow...thats all I can say about all the bs you have had to put up with. We did it, but that was a few years back. I guess I secretly hope that one day stories like yours will be history. You would think that after twenty years something would have changed....but it really hasnt changed much. Thats a sad state of reality for the "worlds leading civilized country".Anyway, I was going to say...please read my Mileposts post. You will probably have to do a search...or better yet have Melanie do it. She can find it quick-- anyway, it might help your wife a little...it was a story about my daughter, and almost giving up, and where we are now.
Its a slow process and you unfortunately are at the beginning of the process. Hopes and prayers for you and your wife, that things will get better quickly.
(((((HUGSSssssss))))))))
Lishs mom
Hello mom, from your name you too are doing
battle for a loved one, what a fight hay,
I am not used to having to do battle with
half the med. world. And I must be nice ( a little) while doing it. What ever happened
to going out behind the barn and socking each
other in the eye for awhile, now that I`m
good at, oh well sweet dreams, not in this day.
I will look for your post you speak of and
will read it,I will find it my self, I have
learned how, wow the stuff you can learn on this thing, no end, when vic feels better I
will go to some of those gov. watch-dog web
sites I wanted to look at, Not now Ld takes
up my time now.
So thankyou dear lady for your support
A sparkle in the eye of your loved one, down
the road.
Steve