i need advice

[Guest guest]

Hi ,

I'm a list lurker and have never gotten around to posting an introduction to the

group, but I had to answer your post.

My name is Barbara and I'm 28 years old. I've had PA since I was 12 or so

(officially diagnosed at 16). It's relatively nasty and has affected my ankles,

knees, wrists, neck and hands (my right hand is *bad*...very deformed). My

husband and I have a three year old little girl named Paige beth. I got

pregnant at 24, knowing that with as progressive as my PA has been, I wanted to

have my child while I was still young.

When my husband and I decided to get pregnant, I was weaned off of basically

everything. At the time I was taking methotrexate, naprosyn and prednisone. I

was given the option of staying on a very low dose of prednisone, but I chose to

try to go off of everything, not wanting to question the meds if anything was

wrong with the baby once I was pregnant.

I was pretty miserable by the time we started trying to conceive, but luckily,

we hit pay dirt on the first month we tried. By the time I was six weeks

preggers, it was if my PA was *gone*. I felt wonderful with absolutely no

medications. I stayed in remission during the entire pregnancy. I've heard

that many women with arthritis go into a sort of remission while pregnant.

About 5 weeks after giving birth to my daughter, *agony*. Huge flare. I

immediately had to go back on all medications (forcing me to stop breastfeeding

my daughter...major bummer) in order to function.

So my experience was that pregnancy agreed with my PA and that it came back with

a vengeance after giving birth.

If there are any specific questions you have, please feel free to e-mail me.

Good luck,

Barbara

*********** REPLY SEPARATOR ***********

On 5/14/1999 at 5:30 PM Stimson wrote:

>From: Stimson <directgrafx@...>

>

>Hi Everyone,

>

>Earlier in the week I wrote to ask if anyone had any suggestions about

>pregnancy (sorry guys) and PA.

>

>A year and a half ago, my husband and I were considering having

>children but right after I went off the pill the next month was the

>first signs of PA, the old dreaded sausage toe. After 5 months I was

>diagnosed with PA and now am finally under control or remission so to

>speak.

>

>I will be 36 in July and thought I might reconsider the child thing. The

>biggest hurdle is now my business partner (I own my own advertising

>firm) is pregnant and in the beginning of her 12 week and sicker than a

>dog. I mean at home sick with an IV. So, she hasn't been at work ALL

>week.

>

>Anyway, when I talked with my Rheumy he was very encouraging. In fact I

>was kinda freaked when he mentioned that I would need to be weaned from

>the Methotrexate, Azulfidine, Voltaren, etc. and Prednisone would be the

>only alternative while I was trying to get preg. and during. He also

>mentioned that the disease would be allowed to progress as well since

>pred. only masks symptoms and doesn't stop progression.

>

>He also mentioned the after pregnancy flare up which usually is BAD.

>Any feedback would be helpful in my decision process. Has anyone gone

>through this experience? If so, would you do it again? HELP.

>

>Dez

>

>

>

>

>------------------------------------------------------------------------

>How many communities do you think join ONElist each day?

>

>More than 1,000!

[Guest guest]

,

I was diagnosed with Psoriasis at the age of 8. I have suffered for years

with PA until it was fially diagnosed during a terrible flare.

My husband and I have six children. We adopted three older boys (all grown

and out of the house now), and had a birth child, (very complicated

pregnancy), and adopted two younger children to complete our family. I can

say that I am blessed to be able to have had a birth child, but love all my

children with all my heart and could have adopted alone just as easily.

I'm not sure I would want to pass this disease along to my children, so

though I am grateful for my daughter, I have to admit that I'm afraid for

her. I don't want her to suffer the way I do. Having been adopted by my

stepfather as a little girl, I had no history on my birthfather's side of the

family. So, my doctor's had me research and find my birthfather to get some

medical history when they weren't sure what I had. After a long search, I

found my dad. He turned out to be completely adopted himself. So, after

much research, we have found his birth family and the process has begun to

find out about our medical history. Both my birthgrandmother and her mother

died of breast cancer, so I feel like it was good I found this out. We are

finding out new things all the time and my (new) halfsister Joni, has

dedicated herself to helping me and our medical history search. It's been

amazing! I guess what I'm trying to say is have a baby by all means if you

need one to fufill your life, but don't rule out adoption. It's a great way

to have a family and give a home to some wonderful children. You might

consider having a baby and if it's too rough, adopt your next child so your

little one will have a sibbling and someone to grow up with. Ofcourse,

that's if you and your husband want more than one child.

I feel a lot of guilt as a parent because I'm so sick all of the time. It

takes a lot of work and effort for me to make my children's lives as normal

as possible. I am glad that my daughter Molly (8) has two younger sibblings,

(5) and Tyler (6) to keep her busy. If she were my only child, she

would be so much more aware of my bad days. All of my children notice bad

days, but they are busy entertaining themselves and keeping eachother company

to sit at my bedside and take care of me.

Children are a blessing. Pray about it, if the Lord wants you to have

children, you will. Whether they are born from your womb or born out of your

heart. I'll pray for you. I wouldn't want to discourage you from having a

family. My kids are the reason I make myself get out of bed each day.

Take care.

Amy

[Guest guest]

,

Unfortunately, all your symptoms which sound like Lyme, could also be many

other things, since Lyme mimics many others diseases. Is she testing you for

Lupus, Rheumatoid arthritis, thyroid, etc? An even if your test comes back

negative, it doesn't mean it really is. They have to keep re-testing. And if

it comes back positive (like my first one did) a lot of non-literate Lyme

doctors still refuse to think it is positive, since they get a lot of false

positives on this test. My doctor did both Western Blot and the Lyme Urine

Antigen test (LUAT). My LUAT came back positive for several bands, but not

all, but the diagnosis is mostly a clinical one. So you really need a Lyme

literate doctor. Good Luck

Vicki

[Lyme-aid] I need advice

>From: lisa86@...

>

>As you may or may not be aware, although I share many symptoms with the

>people on this list, I have yet to share a diagnosis. I saw my primary care

>physician today and she agreed to have blood drawn and tested for Lyme. It

>was clear, however, that she really didn't think anything would come of it.

>Her basic reason is that " Michigan is not an at-risk state. " And even

though

>I strongly disagree with that statement, and have met many of you on this

>list who are from this area, the maps I pull off the Lyme websites don't

back

>me up. They all show Michigan as very much in the clear. Can anyone explain

>this to me?

>

>These are the complaints I printed out and gave to her. She is only willing

>to recognize a few common ones as having any possible connection to Lyme.

>

>Chronic headaches

>Psoriasis (or some skin condition) on the scalp, worsening quickly

>Chronic sinus infections

>Chronic conjunctivitis

>Thrush (or some sort of coating on the roof of the mouth every morning)

>Severe muscle stiffness and pain in the neck and shoulders

>Swelling and pain in all joints, including shoulders, elbows, wrists,

knees,

>hips, ankles

>Consistently tender rib cage

>Sciatica that almost never stops — can't stand or walk for more than 5 or

10

>minutes

>Extreme fatigue — often sleeping for days without feeling rested

>Nightmares — probably made worse by Prozac

>High blood pressure

>Serious weight gain — unable to lose

>Irritable bowel syndrome

>Panic attacks in places such as grocery stores — intestinal problems,

>crippling back pain, out of control perspiration

>Constant sweating — always too warm

>Severe depression, even with 60 mg of Prozac daily

>

>The rest are of great concern to her, but she is clearly not Lyme literate.

I

>need to get the best possible printout of Dr. B's protocol. Can someone

>please provide me with the link to that website? And I would like advice on

>how to proceed if these tests come back negative. I really like this

doctor,

>but I need to know for sure if I have Lyme and, if the tests come back

>positive, I need to be sure that I am treated appropriately. I would really

>like to avoid some of what the rest of you have gone through the hard way.

>Any advice would be welcome. Thanks in advance.

>

>

>

>---------------------------

[Guest guest]

In a message dated 09/17/1999 8:18:41 AM Pacific Daylight Time,

lisa86@... writes:

<< rom: lisa86@...

Absolutely! I think the list of East Coast doctors who will confer would be

invaluable. Please forward it. And thanks again.

>>

, we have a few physicians here in Michigan who are willing to educate

another physician. Carol Lyme Disease support group leader for Northern

Oakland County

[Guest guest]

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hello lisa,

<p>I really hope you get tested for all five of the tick borne illness'

.. Otherwise how good could your diagnosis be? Please remember if you have

been taking anti-biotics your tested titer rates might be low and give

a false negative.

<p>Wes

<br> & nbsp;

<br> & nbsp;

<br> & nbsp;

<p>lisa86@... wrote:

<blockquote TYPE=CITE>From: lisa86@...

<p>As you may or may not be aware, although I share many symptoms with

the

<br>people on this list, I have yet to share a diagnosis. I saw my primary

care

<br>physician today and she agreed to have blood drawn and tested for Lyme.

It

<br>was clear, however, that she really didn't think anything would come

of it.

<br>Her basic reason is that " Michigan is not an at-risk state. " And even

though

<br>I strongly disagree with that statement, and have met many of you on

this

<br>list who are from this area, the maps I pull off the Lyme websites

don't back

<br>me up. They all show Michigan as very much in the clear. Can anyone

explain

<br>this to me?

<p>These are the complaints I printed out and gave to her. She is only

willing

<br>to recognize a few common ones as having any possible connection to

Lyme.

<p>Chronic headaches

<br>Psoriasis (or some skin condition) on the scalp, worsening quickly

<br>Chronic sinus infections

<br>Chronic conjunctivitis

<br>Thrush (or some sort of coating on the roof of the mouth every morning)

<br>Severe muscle stiffness and pain in the neck and shoulders

<br>Swelling and pain in all joints, including shoulders, elbows, wrists,

knees,

<br>hips, ankles

<br>Consistently tender rib cage

<br>Sciatica that almost never stops — can't stand or walk for more than

5 or 10

<br>minutes

<br>Extreme fatigue — often sleeping for days without feeling rested

<br>Nightmares — probably made worse by Prozac

<br>High blood pressure

<br>Serious weight gain — unable to lose

<br>Irritable bowel syndrome

<br>Panic attacks in places such as grocery stores — intestinal problems,

<br>crippling back pain, out of control perspiration

<br>Constant sweating — always too warm

<br>Severe depression, even with 60 mg of Prozac daily

<p>The rest are of great concern to her, but she is clearly not Lyme literate.

I

<br>need to get the best possible printout of Dr. B's protocol. Can someone

<br>please provide me with the link to that website? And I would like advice

on

<br>how to proceed if these tests come back negative. I really like this

doctor,

<br>but I need to know for sure if I have Lyme and, if the tests come back

<br>positive, I need to be sure that I am treated appropriately. I would

really

<br>like to avoid some of what the rest of you have gone through the hard

way.

<br>Any advice would be welcome. Thanks in advance.

<p>

<p>---------------------------

[Guest guest]

Hi '

I am very interested in that info. Thank you so much for offering.

[Guest guest]

Thanks, Wes. I had not been taking abx, although the same day she ordered the

test, she prescribed Bactrim for a sinus infection. I told her I wouldn't

start taking it until after I had the blood drawn. She ordered the ELISA

(sp?) -- does that test for all five?

[Guest guest]

beth Feldman wrote:

>

> From: " beth Feldman " <elsbeth@...>

>

> One more thing , Lynn Shepler, a psychiatrist on the East Coast with

> a large Lyme practice, gave me the phone numbers and addresses of

> doctors on the East Coast that are willing to consult with other doctors

> re: Lyme. If your doctor is open I'll pass that info on to you. This is

> true for anyone else on the list that's interested.

>

> beth

> SF, CA

>

> ---------------------------

[Guest guest]

beth,

I would be interested in that list, does it include any doctors in land?

Vicki

Re: [ ] I need advice

>From: helen fasy <liveitup@...>

>

>beth Feldman wrote:

>>

>> From: " beth Feldman " <elsbeth@...>

>>

>> One more thing , Lynn Shepler, a psychiatrist on the East Coast with

>> a large Lyme practice, gave me the phone numbers and addresses of

>> doctors on the East Coast that are willing to consult with other doctors

>> re: Lyme. If your doctor is open I'll pass that info on to you. This is

>> true for anyone else on the list that's interested.

>>

>> beth

>> SF, CA

>>

>> >Send to -Offtopiconelist messages unrelated to lyme, please.

>/archives.cgi/

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

[Guest guest]

I don't have any wonderful legal advice that will help you but I must say

that I commend you for your stand for God and His word. You are so right

about getting sick and the government turning their heads aside as you slowly

slide downhill.

I am in Hawaii and started having major GWI symptoms about 1 1/2 years ago

from my deployment in Desert Storm/Shield. I had some symptoms for years but

dealt with them. After many tests and a year of run around my doc finally

did a permanent profile and sent my records to a MEB for disability

determination. The GWI doc is a pure quack and I told him 6 months ago that

I didn't want his services any more and to please stop calling me, which he

honored. Well, last week he calls my wife during normal duty hours looking

for me. Later he called me at my duty office and said that he had received

my MEB paperwork and wanted to do a follow up on some tests. He wanted to do

another barium enema, flexible sphynometry and other useless tests. I asked

him why he wanted to do these tests again (3rd time) and he said the

radiologist saw a 10 cm polyp during the first barium enema. I asked him if

HE saw it and he said no but that he might have missed it. I asked him to

look at it again. All this occurred at 1600 hr. (4:00 PM). At about 4:25 he

called back and said that he, the radiologist and my Rhuematologist had

reviewed the test and couldn't find anything. (Now how many of you believe

that 3 docs got together after 1600 and reviewed 1 years worth of tests in

less than 30 minutes?) So, he said he wanted to start all over again with

the tests because they didn't find anything! I asked him why he did the

tests in the first place since I didn't have any symptoms of gastro problems.

He said that I had complained of diarrhea and stomach problems. I told him

I did NOT complain of those symptoms and then told him I would not take the

tests. He told me that was my choice but that he had to offer them to me and

hung up. I know that my refusal will cause the board to find me fit for duty

with no disability and will then cause another doctor to order me to take the

tests. If I refuse these surgical procedures they will try to court martial

me. That's how they get active duty soldiers who give their lives to the

service of their country when they are too sick to continue.

I will not tell you to take the shot, refuse the shot or anything like that.

I will tell you that if you believe what you said in your letter then you are

doing the right thing and should continue to follow your convictions. As for

the chief telling you that you had to follow a doctrine that disallows

vaccines, that is unconstitutional. This very act says that you have to be

in a government approved religion. The government doesn't have the legal

right to say any religion or denomination is approved or that you must belong

to a denomination in order to serve God. You need to contact JAG immediately

and also the American Center for Law and Justice, a free legal service that

supports free access to religion in America.

God bless,

Don

[Guest guest]

I guess I would ask if you have done a " religious waiver " . If you have,

then, that includes the Anthrax. If you have not, to try one now, may appear

" shaky " , if you've taken other vaccinations. The religious waivers allows

members to be excluded from all vaccines, for the reasons you stated below.

<< I was wondering what

I could do, because I want to refuse it. I am a serious Christian, I don't

want to defile my body with any shots, including the anthrax. I follow the

Bible to the t. I believe my body is a sacred temple of God, and to defile

it with vaccinations is absolutely out of the question. >>

[Guest guest]

, my husband Wayne is on 30mg of MTX once a week by injection,

celebrex 200mg twice a day, percocet for pain, flexeril for spasms, ambien

for sleep, Nothing else he took ever helped. He has the same areas of pain

as you but has improved some on the MTX. His liver profiles are normal, has

blood drawn every 3 months and the only problem was a few mouth sores, that

folic acid and leucovoren keep from happening, and his hair got thinner.

When he has a bad flare, he takes prednisone for a short period. We are

now trying to get him on enbrel. Please keep fighting this awful disease

If your Rheumey reccomends MTX and it may help you give it a try. Keep your

spirits up if you can, you are not alone. Sharon

[Guest guest]

,

I nearly cried when I read how fast it has crept up on you. I'm 36 and have

been on methotrexate for 5 years. I won't white wash it, there can be

problems, but I do know of people who have been on it for 30 years with

absolutely no problems. Methotrexate does dampen your immune system, making

you receptive to 'bugs'. I haven't had any problems in years gone by, but

this year I have had one thing after another.

However on the positive side when I first started taking Methotrexate my RI

(?) index was 45 (inflammation level) and it is now 12 (normal). High

inflammation is what can cause long term damage to your joints. You are

young and can't afford to allow damage and therefore need to consider

something.

The positive aspect of PA is as I was saying the other week....my friend

Cheryl had it from 15 to 30, but for the last 3 years has been in total

remission....it can happen. As you can see from my previous email to

Michele, there is also diet to consider. Some people have also tried this

antibiotic treatment with great success..... (Dr. Browns Protocol).

I had a flare for 4 months that seem to finish about a month ago. I

wasn't completely off my feet, but just felt really sick and sore all over.

Funnily I didn't really have sore feet, which I use to get years ago.

Anyway I'm on a special diet, I'm taking methotrexate and I'm taking lyprnol

and other naturopathic treatments....and I'm feeling so much better.

I feel the risks associated with methotrexate far out weight the life

degeneration and pain you are experiencing at present........life is too

short to not be able to spend time enjoying it with your husband and

children.

There are options....keep in touch with this group and read the emails as it

will give some direction.

Thinking of you,

Kate

[Guest guest]

In a message dated 5/22/2002 8:38:02 PM Central Daylight Time,

pickndaisies2002@... writes:

> So.....if

> you were me would you get a trache and lose a lot of independance

> just to get a g-tube?

>

No, I honestly wouldn't. Me and traches don't mix. =) I needed almost

constant suctioning when I had mine. It was so awful. I couldn't swallow

properly, so I aspirated every time I ate. All I can say is if you're as

healthy as you can be despite SMA, just try to eat more. Good luck.

[Guest guest]

In a message dated 5/22/02 8:38:02 PM Central Daylight Time,

pickndaisies2002@... writes:

>

> Ok.....I went to the DR. And he said if I wanted to get a g-tube

>

Why do you need a trach?!!! I got a G tube 5yrs ago no vent/trach needed.

There are at least three ways to get a g tube. I did they way so I wouldnt

need to be put to sleep/vented. It was rater easy. The gtube saved my life. I

gained over 20 pounds. I look better.

[Guest guest]

In a message dated 5/22/02 9:23:46 PM Central Daylight Time,

pickndaisies2002@... writes:

>

> how did they do it w/out putting you to sleep?????????

>

I don't know what type of DR your seeing for this.....

But I couldn't do the in office way (you are awake) down my mouth because I

cant open my mouth. They didn't want to do surgery either because I'd be

vented and my lungs are week so I might never get off the vent.

So we went trough DVI/RADIOLOGY. They do lots of vein 'surgery' and stuff. I

think some heart stuff too. They do PIC lines too.

Anyway, they just gave me a light sedative and they have an x-ray camera to

locate my stomach. Then they stuck a tiny tiny tube down my nose and " blew "

my belly up with air to get a good location. Then a quick shot in the belly

to numb it. Then they poked a hole in my tummy (its was a bit funny.... " Oh,

look they are stabbing me " but I didn't feel it. Then they put the tube in

the hole! Done! Took about 5-10 minutes to place. I was in the OR a half hour

(prep & clean up). Its a safe way because they see your organs and know where

to put it. Our organs are not always where they should be.

I wont lie your tummy will be sore a week and you will need some pain meds

the first few days.

[Guest guest]

In a message dated 5/22/02 10:14:52 PM Central Daylight Time,

lynnie53@... writes:

> esma1999

> Oh my heck! Are you crazy?! I would NEVER let a dr. put a tube in me

> like that! Just *BAMM!!*

> and it's in! ouchy.

>

>

Its not that bad lol and they dont just bam it in lol

[Guest guest]

In a message dated 5/22/2002 6:38:03 PM Pacific Daylight Time,

pickndaisies2002@... writes:

> if

> you were me would you get a trache and lose a lot of independance

> just to get a g-tube?

>

No, I wouldn't. I've had a trach for 7 years and it's pure hell at times.

Don't get a trach unless you ABSOLUTELY need it. I'm really thin too and

could use extra weight but I wouldn't get a trach just to gain 15 pounds. Its

not worth it.

Deena

[Guest guest]

>>No, I honestly wouldn't. Me and traches don't mix. =) I needed

almost

constant suctioning when I had mine. It was so awful. I couldn't

swallow

properly, so I aspirated every time I ate. All I can say is if you're

as

healthy as you can be despite SMA, just try to eat more. Good luck.

That isn't a fair representation of a trach! If somebody has those

problems with a trach, you had the wrong kind of trach then. Allot of

suctioning means the trach was rubbing your trachea. Aspirating was most

likely from using a fennistrated trach. Or more simply you have acid

reflux... Trach are good, when your doctor knows about trachs...

Take Care,

Cody Namesnik

codemann@...

[Guest guest]

I would see another doc & get another opinion.. That doesn't sound

right..

Take Care,

Cody Namesnik

codemann@...

I need advice

Ok.....I went to the DR. And he said if I wanted to get a g-tube

then I would have to get a trache. He said they probably couldnt

intubated me cause my throat is so small. I dont really need a g-

tube, was just thinking it'd give me some extra calories. So.....if

you were me would you get a trache and lose a lot of independance

just to get a g-tube?

also, how much do you guys usually pay your nurses an hour?

Thanks

http://www.turbokev.com/crazydaizy/images/webcampics/Jessic.jpg

[Guest guest]

how did they do it w/out putting you to sleep?????????

[Guest guest]

In a message dated 5/22/2002 8:57:54 PM Central Daylight Time,

codemann@... writes:

> That isn't a fair representation of a trach! If somebody has those

> problems with a trach, you had the wrong kind of trach then. Allot of

> suctioning means the trach was rubbing your trachea. Aspirating was most

> likely from using a fennistrated trach. Or more simply you have acid

> reflux... Trach are good, when your doctor knows about trachs...

I disagree. I had 3 (maybe more) different kinds of traches and all of gave

me different ill side effects. My doctor at the time was very well-educated,

so I doubt that was the problem. I, for one, believe some people just don't

do well with them. There are plenty of people who live great lives after a

trache, I just don't think she should get one unless she *needs* it.

[Guest guest]

In a message dated 5/23/2002 12:33:39 AM Central Daylight Time,

DeTannous@... writes:

> No, I wouldn't. I've had a trach for 7 years and it's pure hell at times.

> Don't get a trach unless you ABSOLUTELY need it. I'm really thin too and

> could use extra weight but I wouldn't get a trach just to gain 15 pounds.

> Its

> not worth it.

LOL. I love you, Deena. =)

[Guest guest]

esma1999

Oh my heck! Are you crazy?! I would NEVER let a dr. put a tube in me

like that! Just *BAMM!!*

and it's in! ouchy.

I have a trach and it was a pain in the butt at first but it's saved my

life many MANY times! No g-tube here just plain 'ol prednisone cheeks! In

otherwords: I'm constantly eating, I am trying new *psych* meds & on

prednisone from a recent cold. Whew! Having nooo problems w/ low calories

;p

~jodi

[Guest guest]

I have a PA right now that works for me just at school..she drives 45 min to my

house, then drives me 45 min to school, 45 min home 2 days per week--her own

car. at school she assists me by taking all my notes, assists me physically

(jacket on off, reaching things, stuff out of backpack, getting something to eat

, restroom)---she works hard/has to do a lot for me, so i pay her $14 an hr

(this is inflated a bit to cover her gas/car usage)----the agency that pays her

only pays $8 per hr, so i give her more hrs than she works to make her pay

$14/hr since i dont use them all. i will be hiring a PA in fall just to help

me w/ my volunteer work and driving to various appointments...it will be a lot

less work than my " School PA " cuz there will be no school notes (thats actually

a lot of work), and all i really need the PA for while im volunteering is to be

" on call " for restroom or if i need to get something to eat, jacket on/of, or

something like that---this person will get $10 or $11 an hr .

lauren

pickndaisies2002 <pickndaisies2002@...> wrote: also, how much do you

guys usually pay your nurses an hour?

Thanks

http://www.turbokev.com/crazydaizy/images/webcampics/Jessic.jpg