Re: LUPUS vs LYME -- HELP

[Guest guest]

My old duck told me I had Lupus. My gut told me it was something else. If

you can possibly do it, go out of network to a LLMD to get his opinion. If

he says no, you have your answer. Rita

[ ] LUPUS vs LYME -- HELP

> I'm a little too ferklempt to pay close attention to an archive search

> right now.

>

> My 23 year old daughter was admitted to the hospital today with

> symptoms that the ER Dr thinks might be Lupus. Her father (who is now

> deceased) and I both (had) have Lyme.

>

> She presented with severe chest pain and could not take a deep breath

> since 11 PM Thurs. night. Fever went up to 102.2 in ER. Initial blood

> tests indicate no infection. Abdomen more painful on pressure than

> chest or ribs, so focus is gastro. XRAy, ultrasound, urine, bloodwork,

> -- indicate no abnormalities. CAT scan is yet to be determined.

>

> Yes, I have requested Lyme Titre and nurse put it on the chart, even

> though she told me there is no Lyme in Florida. I quickly corrected

> her with recent articles cited on this list. I hope to see the DR. in

> the morning.

>

> My question is: Has anyone been misdiagnosed with Lupus????? And how

> similar are they? I only know about Lyme. My daughter has joint

> pain, feels she suffered a minor stroke a while ago with numbness and

> tingling in her arm and hand, severe wrist pain, fatigue, anxiety and

> depression (Gee, she sounds like her mother more every day!) and now

> she can't breathe without severe pain. This is a single Mom with two

> young ones and far too much stress. I am her only support and I'm on

> disability with Lyme, myself.

>

> They have called in a gastro specialist and are giving her pain meds -

> from demerol in the ER to morphine now that she is admitted.

> Morphine? Isn't that radical? I was so taken by surprise by this

> sudden onset of her illness that I neglected to write down every med

> they gave her.

>

> The Drs are puzzled, but this girl is SICK. I have an LLMD, but my

> daughter is on medicaid and can't see him unless referred. The usual

> medical nightmare.

>

> I do know they gave her a pencicillin type abx, Vioxx for the joint

> pain, Protonix for her stomach (an ulcer med?), and fenagren for the

> nausea, which knocks her out.

>

> Hopefully, Dr will do Lyme titre. In the meantime, any suggestions or

> advice???

>

> I'll be checking the list in the early a.m. EST. Then, back to the

> hospital. I need to be able to hit this Dr. with facts. I have Lyme

> facts, but just because I have Lyme doesn't mean she does. Hence, my

> Lupus questions. I don't know where else to turn.

>

> Grateful thanks.

>

> Blessings,

>

>

>

>

>

[Guest guest]

Thanks, Rita. I'm off to the hospital now. If the hospital ducks are

nuts, which I anticipate, I'll try and get her to my LLMD. Right now,

she's out of it and stuck where she is. At least, they will do a Lyme

titre.

Blessings,

> My old duck told me I had Lupus. My gut told me it was something

else. If

> you can possibly do it, go out of network to a LLMD to get his

opinion. If

> he says no, you have your answer. Rita

>

>

[Guest guest]

Problem is that if they use the hospital lab and she has Lyme, it's not

likely to show up in a hospital lab. Labs are very important. Rita

[ ] Re: LUPUS vs LYME -- HELP

> Thanks, Rita. I'm off to the hospital now. If the hospital ducks are

> nuts, which I anticipate, I'll try and get her to my LLMD. Right now,

> she's out of it and stuck where she is. At least, they will do a Lyme

> titre.

> Blessings,

>

>

>

> > My old duck told me I had Lupus. My gut told me it was something

> else. If

> > you can possibly do it, go out of network to a LLMD to get his

> opinion. If

> > he says no, you have your answer. Rita

> >

> >

>

>

>

>

[Guest guest]

Jen-

I wish I was there to help you.

YES, I have many, many lyme clients (including my next door 30yr old

neighbor) that was MISDIAGNOSED with lupus.

It is due to a postive on the ANA test (shows inflammation)>

See Art's site.

<A

HREF= " www.geocities.com/HotSpring/Oasis/6455-lyme " >www.geocities.com/HotSpring/O\

asis/6455-lyme</A>

sue massie

[Guest guest]

Yes, Rita, in my upset state, I forgot about labs! The Dr. didn't

show up at the hospital until 3PM today. He already had a Lupus test

done and they drew more blood for the Lyme titre, but then we have the

lab issue.

Thanks for your reponse. I really feel so alone and overwhelmed by

all this. She's a 23 year old single mom with two boys and no real

support other than myself -- and I am limited. I mean this girl is

walking miles and taking buses with her kids to day care and then

working at a menial job. I'm afraid this will just push her over the

edge.

Let's see what tomorrow brings. Going to the hospital is awful

enough, but on a weekend, it's very nerve wracking, as the Dr's are

all on call and not around very much. I suppose that can be a good

thing at times!

I'm going to check and see if she can select my LLMD as her primary

physician with her medicaid plan on Monday.

Blessings,

> Problem is that if they use the hospital lab and she has Lyme, it's not

> likely to show up in a hospital lab. Labs are very important. Rita

[Guest guest]

Thanks, Sue. I can't seem to get to this site. Can you email me the

URL privately?

They did do a lyme titre today and we are waiting for the Lupus test

results.

So, are you saying that this ANA test will read positive simply

because there is an inflammation? Then she will probably test

positive for it.

Dr. said there was a pleuritis of her chest wall and inflammation in

her joints and she is having muscle pain now, too. She is only on

Vioxx now. They took her off all abx and pain killers and the IV, as

she can tolerate food. No morphine, thankfully. Just Darvocet.

We should know the test results tomorrow, but I'm so tired right now

that I'm thinking what good will they do? I mean, obviously, she has

an inflammation!

This whole thing just stinks. As I wrote in my other post, she has two

young boys with no Dad around and just barely making ends meet. Her

life is very tough. I'm disabled and single and have an 86 year old

mother in a nursing home. How far are we supposed to be able to stretch?

I've suspected something was wrong for a while now with my daugher, as

she's had a lot of joint pain and increasing anxiety and depression,

as well.

AS I mentioned to Rita, I'll do what I can to see if my LLMD can be

chosen as her primary physician through her medicaid plan.

Thanks again, Sue.

Blessings,

> Jen-

> I wish I was there to help you.

> YES, I have many, many lyme clients (including my next door 30yr old

> neighbor) that was MISDIAGNOSED with lupus.

> It is due to a postive on the ANA test (shows inflammation)>

> See Art's site.

>

> <A

HREF= " www.geocities.com/HotSpring/Oasis/6455-lyme " >www.geocities.com/HotSpring/O\

asis/6455-lyme</A>

>

> sue massie

>

[Guest guest]

Sue, I found the site with all the links. Thank you!

> See Art's site.

[Guest guest]

,

I am by no means an expert on this stuff, but ask at the hospital for

assistance from social services. They should be able to help your

daughter get some support in place. Best wishes,

Meg

>

>

> This whole thing just stinks. As I wrote in my other post, she has

two

> young boys with no Dad around and just barely making ends meet. Her

> life is very tough. I'm disabled and single and have an 86 year old

> mother in a nursing home. How far are we supposed to be able to

stretch?

>

> I've suspected something was wrong for a while now with my daugher,

as

> she's had a lot of joint pain and increasing anxiety and depression,

> as well.

>

[Guest guest]

Dear ,

Bless you!! I know how overwhelming all this gets. Just know that there

are TONS of us out here, on this website, and all over, who can empathize

with you, and are praying for you, to persevere. if there is anything I can

do (barbarahankinson121@...) please contact me-- at least I can

listen, and send you my prayers and support. I am thinking of you. I know

how absolutely OVERWHELMING this all is, like a TIDAL WAVE, precisely the

kind of stress we aren't equipped to handle without severe consequences to

our health and well-being.

there ARE resources out there, somewhere, and there are so many of us that

care. You are an incredibly strong woman, to be out there, using the bus

for transportation, raising your children, and just DOING WHAT IT TAKES to

get things accomplished. i admire you greatly.

You go girl, and just know, we're all pulling for you. Love conquers a

LOT-- (not sure if I have enough faith right now to say that it conquers

all, but some believe that, anyway :-)

peace and love bh

>From: " jennifer_sloane " <j.sloane@...>

>Reply-

>

>Subject: [ ] Re: LUPUS vs LYME -- HELP

>Date: Sun, 28 Sep 2003 03:05:02 -0000

>

>Yes, Rita, in my upset state, I forgot about labs! The Dr. didn't

>show up at the hospital until 3PM today. He already had a Lupus test

>done and they drew more blood for the Lyme titre, but then we have the

>lab issue.

>

>Thanks for your reponse. I really feel so alone and overwhelmed by

>all this. She's a 23 year old single mom with two boys and no real

>support other than myself -- and I am limited. I mean this girl is

>walking miles and taking buses with her kids to day care and then

>working at a menial job. I'm afraid this will just push her over the

>edge.

>

>Let's see what tomorrow brings. Going to the hospital is awful

>enough, but on a weekend, it's very nerve wracking, as the Dr's are

>all on call and not around very much. I suppose that can be a good

>thing at times!

>

>I'm going to check and see if she can select my LLMD as her primary

>physician with her medicaid plan on Monday.

>

>Blessings,

>

>

> > Problem is that if they use the hospital lab and she has Lyme, it's not

> > likely to show up in a hospital lab. Labs are very important. Rita

>

>

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[Guest guest]

Dear Barbara,

Thank you for your kind words of encouragement. I do have Lyme, but

it is my 23 year old daughter, who is the single mom, taking buses to

work, etc. She is the one, I was referring to.

We are still awaiting the results of her tests and she was just

released from the hospital tonight. I have her young boys with me

(ages 2 and 4), so she can get some rest. I've been dealing with my

own Lyme for over 16 years and just received disability this year!

This is all new to my daughter. While she sort of understood my

health issues -- you don't really get it until the second you get it.

That's an old quote from an acquaintance of mine that just seems to fit.

Though you are absolutely right -- it is as overwhelming as a Tidal

Wave! I keep thinking -- Here we go again.

Bless you for caring.

>

> You are an incredibly strong woman, to be out there, using the bus

> for transportation, raising your children, and just DOING WHAT IT

TAKES to

> get things accomplished.

[Guest guest]

" You don't really get it until the second you get it. " should be our

official motto. Rita

[ ] Re: LUPUS vs LYME -- HELP

> Dear Barbara,

>

> Thank you for your kind words of encouragement. I do have Lyme, but

> it is my 23 year old daughter, who is the single mom, taking buses to

> work, etc. She is the one, I was referring to.

>

> We are still awaiting the results of her tests and she was just

> released from the hospital tonight. I have her young boys with me

> (ages 2 and 4), so she can get some rest. I've been dealing with my

> own Lyme for over 16 years and just received disability this year!

> This is all new to my daughter. While she sort of understood my

> health issues -- you don't really get it until the second you get it.

> That's an old quote from an acquaintance of mine that just seems to fit.

>

> Though you are absolutely right -- it is as overwhelming as a Tidal

> Wave! I keep thinking -- Here we go again.

>

> Bless you for caring.

>

>

>

> >

> > You are an incredibly strong woman, to be out there, using the bus

> > for transportation, raising your children, and just DOING WHAT IT

> TAKES to

> > get things accomplished.

>

>

>

>