Janet

[Guest guest]

Hi Jen,

I started supplements in Feb of 2004 as well and it has made a big

difference with my fibro pain! My rhuemy and I decided the flares, (and rash)

are

an allergic reaction to Cymbalta which I take for pain management. So I

stopped taking it and am back on effexor. I'm clearing up, about 75% back to

normal. It's the first time I have ever had an allergic reaction to a med!

I received my Undif diagnosis first - then - 4 months later the Fibro was

added. I had a bone density done which was not good, then an MRI of my

spine which found I am fusing in one part of my spine. That spot becomes very

painful at times!

Well my first hearing against my former employer is Monday. I hope we can

settle this in a short period of time. I don't need the added stress!!

It'll only trigger symptoms that I don't want to deal with.

That's good that your employer is good about accommodating you when you're

unable to do certain jobs.

How did you appointment go on the 8th? Did you have your liver panel run?

Have a nice weekend!

Janet

[Guest guest]

Janet,

Supplements made a HUGE difference for me, especially magnesium and

malic acid. Within about 4 days of starting them, I started having

less muscle pain/spasms, and I had more overall energy.

That really sucks that you had an allergic reaction to Cymbalta. I

heard it's a pretty good med for Fibro pain. I have an article

though that says there are like 2-3, maybe 4, other drugs in

development for Fibro pain though, so never fear. They should all

be out by 2006 at the very latest. I'm glad that researchers are

starting to focus more attention on real, targeted treatments for

Fibro, and that they are starting to acknowledge it as a REAL

illness!

Fibro came first for me, with whatever is going on with my joints

just starting to be treated last month. I haven't even gotten an

actual diagnosis yet. My doctor and I are still trying to figure it

all out. I'm still thinking it's like what you have,

Undifferentiated Spondylitis. I didn't realize that there was a

chance of the bones fusing with Undiff. though. I thought with the

milder form, they usually didn't do that. That changes my outlook a

little bit, and not for the good. I think I'm kind of afraid to

have an MRI. I had one back in 2002, which really didn't show

anything but a bulging disc and some mild degeneration, but I'm not

sure I'd want to know what it would show now. My physical medicine

doctor told me that things couldn't change THAT much in 2 years

(this was when I saw him last fall), but my pain sure has changed,

so I'm thinking he's full of it!

I hope your first hearing goes well. Maybe they will realize that

you mean business and will decide to settle right away. I know that

a lot of employers will bully until lawyers get involved, and then

once they realize you aren't going to back down, they give in. I

hope that's the case with your former employer. I'm glad my company

has been pretty good. Our production manager gave me a lot of crap

in the beginning, but once my FMLA went through, and he realized

that I knew my rights there, as well as the disability laws, inside

and out, he's pretty much left me alone. He even brought me an

article about Fibromyalgia from the Wall Street Journal one day,

about 2-3 days after he gave me a bunch of shit about sitting down

to do part of my job. I don't have any problem standing up to any

of them though, because I know that I have everything documented

within an inch of my life, and I carry it on me at all times.

Everything is air-tight and ironclad. They also know that I have a

very good lawyer ready to jump on them at the slightest indication

of a violation of my rights. As a person with disabling illnesses,

you really have to protect yourself.

I haven't seen my doc yet. My appt. isn't until Tuesday

afternoon...today is only the 5th hon! LOL! I wish my appt. was

sooner, because I've only got 1 Oxycontin left until my appt., and

my body has decided to feel crappy. Thank goodness it's the

weekend, so I can take it as easy as possible. Hopefully, either

Monday or Tuesday will be a good day, or I will be suffering through

one of them! Luckily, I will be doing a (mostly) paperwork job next

week, so it won't be as hard on me as it would if I was doing my

regular job involving standing all day and doing heavy lifting.

I'll be doing a lot of running around, and I will be so busy that I

won't have time to think about whether my body hurts! Hopefully,

Bextra and Soma will be able to fill in the cracks if I feel really

bad!

Well, I have to run, but it was great to hear from you. I promise I

will post again soon, once I see my doc, and get the results back

from my liver panel. I'm kind of hoping he ups my dosage on the

Plaquenil, because while it is helping, I don't think it's quite

enough!

All my best,

Jen

[Guest guest]

HI Jen,

I agree with you. I have less muscle pain/spasms and more energy with the

supplements I am on too.

I've heard of other drugs in development too. For now my Rhuemy has stepped

me back to effexor. Perhaps by 2006 I'll have found more natural supplements to

help and I won't need any prescription drugs!!!! LOL - Wishful thinking.

Well I hope you get an official diagnosis. That's always the first part of

the battle! So now that it is officially Feb. 9th, how did your appointment go?

(Yes, LOL, I was a week ahead of myself last week!)

My first hearing was just to set timelines and verify what steps are expected

from each side. We are now in discovery until May 2nd. So, now the waiting game

again.............

Off to pick up my daughter now!

Take Care,

Janet

[Guest guest]

Janet,

LOL, now that IS officially the 9th, I can give you my test

results....they gave them to my hubby this morning, and he gave them

to me when I called home at lunch time. Happily, everything came

back good. My liver panel was normal, which means my doctor was

comfortable with upping my Plaquenil dosage. I'm taking 300mg for 2

weeks, then will go to 400mg after that...this is just to avoid

things like nausea or blurred vision. I had nausea when I first

started taking it, and avoided suffering by taking my dose at

bedtime. I have to take the new dose in the a.m., so now I have to

deal with it! I don't know what my CRP level was though.

I didn't get an official diagnosis yet though, much to my

disappointment. I'm getting the feeling my doctor is not in any big

hurry to saddle me with yet another diagnosis. I already have 3 on

my list...bipolar disorder, Fibromyalgia, and chronic, full body

tendonitis. I think his reasoning is " what good will a label do? " ,

and pretty much prefers to just go ahead and treat the symptoms.

I'm sure if I pushed him he'd put a name to it, but so far, I

haven't. I'm not sure I'm ready to go there just yet.

My appt. went really well, even though I was personally feeling like

crap! I ran out of my pain med like 2 days before I went in, and my

doctor was like " You dork! " My doc is out of town, and I didn't

want to make 2 trips all the way to his office in less than a week.

I take a Schedule II narcotic, and have to go to his office to get

my script. I'm really hoping that this dosage of Plaquenil will do

the trick. 200mg helped to a certain degree, so maybe 400mg will

help the rest of the way. I really want to reduce my need for

Oxycontin, or get off of it completely. That may be wishful

thinking, but that is what we're aiming for. If winter would just

go away, it might help some!

I hope your lawsuit doesn't drag out forever, but it seems like it's

gonna be a while! Keep me posted on how it's going, and how you

are!

[Guest guest]

Hey Jen,

Now that I am " In The Now " ; it was good to hear your results from the 8th!

Good for you on the liver results and the upping of your Plaquenil!!

Well, maybe another label can wait, as you indicated. The symptoms, I think,

speak for themselves. It's piecing them all together that's difficult. Here's

hoping the increased Plaquenil will do the trick!!

I believe I will have a long road ahead with my court case. I will hang in

there and keep you posted!!

Take Care,

Janet

[Guest guest]

Janet,

Yeah, I was pretty happy that my results came back good too, but now

I might have a new challenge to face. It seems that the

Plaquenil " might " be the cause of some emotional changes that have

been going on. I'm not sure yet, as you will see in my other post,

since I've just gone back to name brand Celexa after taking the

generic for several months. If switching back doesn't make a

difference in a few weeks, I guess I'm going to have to start

working it out with my PCP and psychiatrist. I've worked too hard

on getting my bipolar disorder and things under control to go

through any of this again! <Sigh>.....why is it that nothing can

ever be easy? I finally find something that helps, only to face the

possibility of having it yanked out from under me!

I'm definitely thinking another label can wait, forever as far as

I'm concerned. I already have enough of them to last me a lifetime

as it is! And I really think that the only time I'd need those

labels is if there ever came a time when I got so bad that I had to

file for disability. Like you said, it's the pieces that are hard

to put together, which we've pretty much done, so as long as my

doctor is treating my symptoms adequately, I'll be happy! He's been

doing great so far, with both preventatives and relief meds, so

other than the fact that he might be a little slow in acting, I

can't really complain....he eventually comes around! LOL!

Please keep me posted on how things are going with you, and feel

free to write me off the group any time!

Jen

[Guest guest]

Hi Jen,

I saw your other posts - the the suspected culprit of the mood changes. You

may have something tere with the " generic " as the content of additives is

different fromt he original! It's good you've seen a difference within the

first week!

I'm with you on another label - I have way too many too between pills, steroid

drops and inhalers.........enough!!

Have a good week!

Janet

[Guest guest]

In a message dated 4/23/2005 7:40:32 P.M. Eastern Daylight Time,

rn4premies@... writes:

Just a quick note, we did end up placing a port in , it was the best

thing we could do, her infusions go much easier now, no sticks and looking

for veins etc. is very thin and not a candidate for subq, as her

infusions are every 2 weeks, she doesn't get the ups and downs in her levels

she

had been getting, she has been healthy for 2 months, this is amazing for

her.

I see you answered my question I just asked in my previous email. I am

defiantly going to look into this. Britt is very thin also! I don't understand

how

a port works. Can they go swimming and things? I'm so happy for her not

being sick in 2 months! Isn't it nice seeing her not sick for so long? How long

has she been on IVIG?

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Hi Janet, again!!

has a Port a Cath, it is totally under the skin, it does show, you see

a round circle. I don't think it would show it she had some weight on her ( she

is 9, 10 in Aug, and 55 pounds). She does have 2 scars from the surgery, one

tiny one where they sewed the catheter into the vein and another linear one

about 2 inches long where they put the port itself in. She wants to try and

play soccer this summer, and gymnastics as well as riding her pony. I hope she

is up for all that, we may not do the gymnastics though.

She was started on IVIG last May, I can't believe it has been almost a year,

the changes have been phenominal. I am always waiting for the next infection to

come and it's not, too cool. I hope Brittany is feeling better soon.

mom to

Re: Janet

In a message dated 4/23/2005 7:40:32 P.M. Eastern Daylight Time,

rn4premies@...<mailto:rn4premies@...> writes:

Just a quick note, we did end up placing a port in , it was the best

thing we could do, her infusions go much easier now, no sticks and looking

for veins etc. is very thin and not a candidate for subq, as her

infusions are every 2 weeks, she doesn't get the ups and downs in her levels

she

had been getting, she has been healthy for 2 months, this is amazing for

her.

I see you answered my question I just asked in my previous email. I am

defiantly going to look into this. Britt is very thin also! I don't

understand how

a port works. Can they go swimming and things? I'm so happy for her not

being sick in 2 months! Isn't it nice seeing her not sick for so long? How

long

has she been on IVIG?

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Hi Janet, again!!

has a Port a Cath, it is totally under the skin, it does show, you see

a round circle. I don't think it would show it she had some weight on her ( she

is 9, 10 in Aug, and 55 pounds). She does have 2 scars from the surgery, one

tiny one where they sewed the catheter into the vein and another linear one

about 2 inches long where they put the port itself in. She wants to try and

play soccer this summer, and gymnastics as well as riding her pony. I hope she

is up for all that, we may not do the gymnastics though.

She was started on IVIG last May, I can't believe it has been almost a year,

the changes have been phenominal. I am always waiting for the next infection to

come and it's not, too cool. I hope Brittany is feeling better soon.

mom to

Re: Janet

In a message dated 4/23/2005 7:40:32 P.M. Eastern Daylight Time,

rn4premies@...<mailto:rn4premies@...> writes:

Just a quick note, we did end up placing a port in , it was the best

thing we could do, her infusions go much easier now, no sticks and looking

for veins etc. is very thin and not a candidate for subq, as her

infusions are every 2 weeks, she doesn't get the ups and downs in her levels

she

had been getting, she has been healthy for 2 months, this is amazing for

her.

I see you answered my question I just asked in my previous email. I am

defiantly going to look into this. Britt is very thin also! I don't

understand how

a port works. Can they go swimming and things? I'm so happy for her not

being sick in 2 months! Isn't it nice seeing her not sick for so long? How

long

has she been on IVIG?

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/24/2005 5:36:23 P.M. Eastern Daylight Time,

rn4premies@... writes:

She wants to try and play soccer this summer, and gymnastics as well as

riding her pony. I hope she is up for all that, we may not do the gymnastics

though.

She was started on IVIG last May, I can't believe it has been almost a

year, the changes have been phenominal. I am always waiting for the next

infection to come and it's not, too cool.

Sounds like she is feeling pretty good. (LOL) That is terrific!! I pray for

the day Britt will feel this good. She also started her IVIG a year ago. She

is doing better than she was. She still gets infections though just hasn't

been hospitalized for one in a while until now. This paritoid thing has been

one of her weaknesses along with her sinuses. She is finally gaining weight. So

things are MUCH better than what they were and I am very thankful!

Britt loves horses also she loves to ride. I was always afraid of them. (LOL)

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 4/24/2005 4:36:23 PM Central Standard Time,

rn4premies@... writes:

> I hope she is up for all that, we may not do the gymnastics though.

>

:

We had a lot of infections taking gymnastics even though it was summer. I

guess alot of germs must accumulate on all the equipment. If I were to do it

over

again maybe I'd figure out a way to get the equipment cleaned before class?

Just a thought -- never once got sick from ballet class (no touching

anything!)

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!)

[Guest guest]

I have Mathieu in a small gym group that meets at a mom's house in her nice

large garage. The mat fills the whole floor in the double car garage, and I

can imagine she does clean between practices just to keep germs from

accumulating. She has practice once a day at her house so it is easier for

her to keep up witht he clean-up. Another thing is to make sure you keep

their hands clean after touching so that they are not putting their hands in

their mouths or near their noses where germns can easily find a

home...Easier said than done with my 2 yr old.

P.S. I can't imagine not having him in a program of some kind. He is my

wild child....LOL, constantly climbing on things. I keep hoping he will get

the hint that the gym is where he can do this and home is not...So far it is

not working. LOL, but I will keep trying.

Jay

Mom to

6 yrs old

Mathieu 27 months unkown, low IgG and IgA

We had a lot of infections taking gymnastics even though it was summer. I

guess alot of germs must accumulate on all the equipment. If I were to do it

over

again maybe I'd figure out a way to get the equipment cleaned before class?

[Guest guest]

In a message dated 4/25/2005 7:38:52 PM Central Standard Time,

rn4premies@... writes:

> Thanks , You made up my mind. I appreciate it.

> mom to victoria

>

:

I feel kinda bad about that! But that's the reality, I guess.

Ballet is fun, though!

I wish there was some sort of outdoors tumbling activity -- never has

gotten sick playing outdoors. Ever.

She's going to a birthday party tonight at the most awful Mc's

Playplace, it smells like a sewer. There's a sewer grate in the room, in a place

where

no kids can get to, but it emits a stink, or at least it used to, we stopped

going there. Not very appetizing to sit in that room and eat that awful food.

walked in once and said very loud, " It smells like a TOILET! " . Their big

fix was to stuff a hamburger wrapper on/in the grate. NICE!

But she's going, we're fully aware of the risks. herself was obviously

pondering something, then she said, " I'm going to a Mc's Playplace for

the birthday party, so I'll probably be sick on Monday, right? " I felt so bad

for her. So I told her we'd do our best to try to avoid that, she should wash

her hands alot and keep Purell in her pocket. Sigh!

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 5/8/2005 10:09:47 P.M. Eastern Daylight Time,

sassykay59@... writes:

Does Brittany drink plenty of fluids before her treatments? This will help

the veins pop up more.

Also, a little salt...I often make popcorn for Bri the night before IVIG.

Hi Sandi, yes, she drinks plenty before them. Not salt though.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 5/8/2005 10:09:47 P.M. Eastern Daylight Time,

sassykay59@... writes:

Does Brittany drink plenty of fluids before her treatments? This will help

the veins pop up more.

Also, a little salt...I often make popcorn for Bri the night before IVIG.

Hi Sandi, yes, she drinks plenty before them. Not salt though.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

I start the salt process two days before with the kids. I give all salty foods

for two days - bacon, sausage, potato chips, pretzles. It makes them so so

thirsty, that they are all clamoring for drinks. Here is the other thing I

noticed - my kids tend to react poorly to the emla cream - it makes their veins

dissapear, so we don't use it. It used to take 4 or 5 sticks per kid (and there

is three of them on IVIG) and now it's unusual for it to take more then 1.

Good luck.

Dayna

>

> From: BBsmart2@...

> Date: 2005/05/09 Mon AM 01:02:48 EDT

>

> Subject: Re: Janet

>

>

[Guest guest]

I start the salt process two days before with the kids. I give all salty foods

for two days - bacon, sausage, potato chips, pretzles. It makes them so so

thirsty, that they are all clamoring for drinks. Here is the other thing I

noticed - my kids tend to react poorly to the emla cream - it makes their veins

dissapear, so we don't use it. It used to take 4 or 5 sticks per kid (and there

is three of them on IVIG) and now it's unusual for it to take more then 1.

Good luck.

Dayna

>

> From: BBsmart2@...

> Date: 2005/05/09 Mon AM 01:02:48 EDT

>

> Subject: Re: Janet

>

>

[Guest guest]

In a message dated 5/9/2005 10:47:58 A.M. Eastern Daylight Time,

fladfam@... writes:

It used to take 4 or 5 sticks per kid (and there is three of them on IVIG)

and now it's unusual for it to take more then 1.

Wow Dana, 3 on IVIG! That must be rough. It is hard with just one. Thanks

for the advice, I will defiantly try this.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 5/9/2005 10:47:58 A.M. Eastern Daylight Time,

fladfam@... writes:

It used to take 4 or 5 sticks per kid (and there is three of them on IVIG)

and now it's unusual for it to take more then 1.

Wow Dana, 3 on IVIG! That must be rough. It is hard with just one. Thanks

for the advice, I will defiantly try this.

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

Janet -

Hey - I wanted to second that where we go there have been people doing sub q at

the clinic - in fact, they talked about it with Kate for awhile.

Three on IVIG is not easy - but as I like to say, it's a hell of a lot better

then when they were not on it, and we were at the doctors 4 - 5 times a week.

Dayna

>

> From: BBsmart2@...

> Date: 2005/05/09 Mon PM 09:50:11 EDT

>

> Subject: Re: Janet

>

>

[Guest guest]

In a message dated 5/10/2005 12:37:02 P.M. Eastern Daylight Time,

fladfam@... writes:

Three on IVIG is not easy - but as I like to say, it's a hell of a lot

better then when they were not on it, and we were at the doctors 4 - 5 times a

week.

I can imagine so. As much as I did and still do on IVIG with one child isn't

easy. I'm glad yours are doing well. That's fantastic!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 6/21/2005 6:29:13 P.M. Eastern Daylight Time,

ercokat@... writes:

They already did that to me when the nurse called and said the results were

" normal " , when what she really meant to say is that they were " the same as

last time " .

Oh that's right, I remember that. That was awful!!

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

When I talked to the doctor on the phone today I mentioned that to her. I

told her to please NEVER EVER have anyone else give me the test results over the

phone. She said she is not letting that nurse give out results anymore because

she doesn't understand what the doctor tells her. I guess I had to be the

guinea pig!

Oh that's right, I remember that. That was awful!!

[Guest guest]

Ahh you guys missed me.

Ya know sometimes it is nice to be missed.

Love all of you.

Janet

okseven_7 <okseven_7@...> wrote:

Nice to see ya back

just not the same without you here

Annita

It's a pleasure having you join in our conversations. We hope you have found the

support you need with us.

If you are using email for your posts, for easy access to our group, just click

the link-- Hepatitis C/

Happy Posting