Jean

[Guest guest]

Please if you have issue with this, take it up with Jane. I can't help

that she has sent me the rudest emails in response to sharing my experience. I

think it was uncalled for, but out of my control. It can happen to any of us

who post, and therefore should be discussed. If she emailed me saying she was

concerned about my posting that's one thing, but she made some very harsh

attacks for no logical reason. This post that she referred to and jumped on my

case about was in digest 588 # 2. I don't think it's right for anyone to jump

on another's case like she did to me for sharing my experience like that, and I

don't see anything wrong with saying this, because it is an issue involving the

group, since it was an inappropriate response to what I posted for the group to

see, and can happen to any of us.

{{HUGS}}

Cheryl

===

I don't know what's going on between Jane and Cheryl and I really don't want to

know, but PLEASE keep it private. If you two have a difference of opinion that

can't be worked out, then call a truce ... or something. I used to read the

sci.med.diseases.lyme newsgroup all the time but it got so bad with the fights

and arguments that I quit reading it.

[Guest guest]

Dear

There were a lot of responses to the name of Dr. so please read all

of the posts this week. You can bring up his web site by Dr. .com (

I think) I am not at my address book right now. Another lady said she spoke

to Dr. and he recommended a specific place to get the products. Just

go through the list and you will sort through the stuff. I don't think Dr,

wants to be controlling, I think he wants to have a valuable

research study.

After you read let me know your thoughts.

Toni

[Guest guest]

PLEASE do not give blood if you think you might have AIH. Your

Gastroenterologist can tell you if you have AIH or not. My daughter found

out in Feb. she has AIH and he was one of the doctor on her case and is still

the specialist she sees here. She goes to a Hepatologist in Miami

(University of Miami) also. It sounds like who ever you are seeing is giving

you the run around or just does not know much about the illness. I know you

may have to see another doctor without insurance but please don't give blood

and if you do not get the answers you seek get a second opinion. God bless

and I hope things go well.

Genny/Jodi's Mom/AIH

Florida

[Guest guest]

Jean...... Something to think about..... if you donate blood and DO have

AIH that goes undetected you may be passing it on

in some manner.... at least my hep. at the Cleve. Clinic suggested that

the numerous transfusions that I had, may have been how i contracted the

disease.... I don`t know, but it sounded plausible to me. You certainly

wouldn`t want to be the cause for someone else to receive it.

, I see someone else has suggested what I have said

earlier........ Food Stamps...... If you are receiving SSI it`s fairly

easy to become eligible, that`s what they are there for. See your local

Human

Services board .

jerry

PLEASE do not give blood if you think you might have AIH. Your

Gastroenterologist can tell you if you have AIH or not. My daughter found

out in Feb. she has AIH and he was one of the doctor on her case and is still

the specialist she sees here. She goes to a Hepatologist in Miami

(University of Miami) also. It sounds like who ever you are seeing is giving

you the run around or just does not know much about the illness. I know you

may have to see another doctor without insurance but please don't give blood

and if you do not get the answers you seek get a second opinion. God bless

and I hope things go well.

Genny/Jodi's Mom/AIH

Florida

[Guest guest]

Oh Jan! You cracked me up! I love the not knowing if you are an

Arther or a Martha - oh how I can relate! When I was on 80 mgs for

two months, then down to 60 for the next 5 months, I was in the same

quandry. My mom suggested I get that Sally Hansen facial wax

strips. I do. I put this piece on my lip as big as one whole side

of my lip. Then RIP! Definately can not repeat the word that the

people in the next county heard me screaming. (Sorry Ruth - it was

me!) She never told me to use narrow strips. After that, used nair

or just a plain old razor. Thankfully it as all gone now. Good

thing, my brother was geting jealous that my beard was coming in

better than his.

Love,

Carole K

[Guest guest]

people are so thoughtless or maybe just plain stupid at times! I put in paperwork for a disability retirement in December when it looked like thigs were not going to improve enough that working full time was really an option. I had applied and was approved for disability in 2000/2001 when I was sick before, but my health improved drastically, so I turned it down. This time things have been much worse, so I will not turn it down. They have told me it's pretty much just a formality to get it approved again, but the paperwork process is slow! This week has been a very good week. I was at work tues, wed, and plan on being there tomorrow. Yesterday, a co-worker came by to see me. She asked how I was doing and I told her better. She kept raving about how good I look now that I am thin. I don't even really know how the subject came up, but I said something about that I expected the disability to be processed by the end of Feb. She looked all shocked and said, "you are still going to go out on disability - but you look so good and you said you are better. Don't you think you will just keep getting better - you look so good!" I just told her that with all I have on my plate health wise at this point, a full time job which involves traveling about 50% of the time is no longer an option for me. I told her I turned the disability down before but I will not turn it down this time.

Her comments didn't really make me mad. It just made me think how people who have never dealth with health issues do not understand that you can look good but still feel/be pretty sick. I am glad I do not look as awful as I feel sometimes, as I am sure it would make babies cry!

As for your ct scan. I had a hysterectomy in 93. I had fibroid tumors which were causing my uterus to stay enlarged. My periods kept getting heavier and more painful and I finally said forget it! Ends up, I also had a chronic appendicitis (which I had never heard of before) so they removed my appendix as well. My GYN said most likely the enlarged uterus was putting pressure on the appendix each month, causing it to flare up and then settle down after my period. Gee - that sure explained the high fever, nausea, elevated white count and severe pain in my lower right side I had about a year earlier when we were living in Texas. The doctor said it was stress and I was stupid enough to believe him. That also explained why periods caused increasing pain in my lower right side for about 3 years prior to the hysterectomy!

They left my ovaries when they did the hysterectomy since they both looked healthy. I had no problems at all until Feb 2001, when a cyst that had been on my left ovary for some time decided to get a lot larger and cause severe pain. I ended up having emergency surgery to remove the left ovary because the GYN was afraid the cyst would rupture. He removed the cyst and left ovary, but I still have the right one. He said he had a terrible time getting the cyst and ovary out as it was adhered to my intestines. He said it could have been causing stomach, back, and bladder problems because of where it was and the size of the cyst.

I don't have any experience with having surgery while on prednisone. Well, I did have a port a cath put in my chest last Friday. That's considered a surgical procedure but it's not really what I consider surgery because the incisions are just through the skin (and not muscles and stuff) as far as I know. I have a 3 inch incision on my upper chest and a 1 inch or so incision on my neck. They seem to be healing well so far.

As for prednisone and the weight gain. So far (2 weeks on prednisone) my weight has not changed one bit. However, I am probably too early in the game to be sure it's not going to. I have begun an exercise program and have really prayed for God to help me stick with it! I don't want to gain weight but even more important is that the exercise is absolutely essential if I want to preserve my bone density!

Hopefully when you see the GYN they will have some answers for you!

W

[Guest guest]

Jean: Im just on a flying visit here before zooming off again. Have had

total hysterectomy & polycystic ovaries removed, plus AAA operation..all

done when my AIH was still not under control & feeling quite ill...yes they

can do major surgery and with me, they increased pred to v.large doses to

counter shock & stress to the body as my adrenals werent functioning that

well. In actual fact, looking back Im glad the pred was increased so much

because most of the time, during initial healing (couple of weeks) I was

away with the fairies! I know what your describing, tingly feet, pressure

on chest, difference vertical and horizontal. It took a while for my doctors

to diagnose it....too low BP and heartblock caused by beta blocker BP med I

was on. It may be worth mentioning next time you see your doc, but remember

this is only my own personal experience yours may be (probably is) something

totally different.

Love Jan

Original Message -----

From: <jshaze5@...>

< >

Sent: Friday, January 24, 2003 8:58 AM

Subject: [ ] stroke & liver enzymes

> As for the note about the stroke and red eyes- when I said my eyes

> were red they probably were, but the weirdest scariest part was that

> my eyelids and under my eyes looked red and it made my eyes look

> sunken. I had liver numbers like alt(sgpt) 1400 at the highest, and

> maintained about 900 alt/600 ast(sgot) througout until I got on the

> prednisone. I had elevated numbers since April, when I think they

> were in the low 2-300's. I wonder what are the highest numbers people

> have ever had. After 12 days on prednisone my numbers were almost

> normal- my high number was 72, now is 58 this week so on the way

> down, the other is in normal range.

>

> I am not the " typical " candidate for a stroke, but normally have low

> blood pressure and poor circulation. I had several incidents before

> and during my hospital stay where the color would leave my feet and

> they looked cold and very white- tingly as well. I also had dizziness

> they couldn't explain. Now the meds I think have gotten things

> rolling as far as circulation but when I am tired or been vertical

> for an hour (even sitting reclining) I get pressure in my chest and

> shortness of breath. I told the dr. this but since my vitals appear

> fine now they have no explaination. I felt this in the hospital after

> a few days on the tpn central line. I just don't know whether I

> should press for further tests regarding my heart or stroke concerns.

>

> The other little issue I have is while in Africa I had a cervical

> lesion (they zapped it) that made the docs there say " what is wrong

> with your immune system? " . I have asthma as well which helped

> progress colds and upper resp. infections into walking pneumonia

> while there. Well, had a clear pap a year ago but while in the hosp.

> in December I had a CT scan and it found this:

>

> within the pelvis there is a small amount of free fluid consistent

> with ascites (how do you pronounce that?). The uterus is

> heterogeneous, which could be due to fibroids. There is a 2.9 x 2.3cm

> cystic structure within the adnexa, which is probably a simple

> ovarian cyst.

>

> I have an appt with a new ob/gyn (referred by liver clinic) on

> Monday. I am concerned about the cyst obviously, but just curious if

> you all have any experience with this. If they suggest a hystorectomy

> (sp?) I am wondering what input I should have with this in relation

> to the fact I am still just recovering from acute hepatitis and

> starting on the prednisone. If you have unrelated surgeries, do they

> make you wean down on the pred. due to healing issues (I thought I'd

> read it is harder to heal, etc. on high doses). I will feel better

> once I talk to the ob, but suspect I have more " hospital fun " in my

> near future.

>

> Thanks too for the earlier input on weight and steroids. Even though

> I know I am thin now, I am from a family with obesity struggles

> (parents and one sis) and am painfully aware with all the

> psycological battles. I have kind of a reverse discrimination story-

> as I lost about 20 lbs this past year due to hepatitis, when people

> who are heavy saw me they said things like- " Wow, you look great! I

> wish I could lose weight like you. Of course, I don't want to have to

> get sick to do it. " They were JEALOUS- amazing. I couldn't eat

> because I was so deathly ill- I would have given anything(not really-

> but would have given something) to enjoy my Thanksgiving and

> Christmas meals. My experience is that people who struggle with

> weight don't want any one else to be happy with theirs, since they

> are not. When I get round and moony faced, I'm sure they will

> feel " sorry " for me on one level but feel vindicated in another. It

> just goes to show that many humans struggle to see the world outside

> their own reflection. The biggest concern I have on the weight is to

> avoid diabetes (I'm hypoglycemic, my dad and his dad were diabetics)

> and to stay as HEALTHY as possible. I've been all shapes and sizes,

> after all, I had twins (at 33 weeks they were about 5 lbs each). I

> think the key is to take care of yourself as much as you can.

>

> Final note- if you really watch your salt, can you avoid some of the

> water weight or is it the ascite issue (not understanding this one)

> that the salt reduction is for. Salt repulsed me for a year, so it is

> not hard to watch it but I am being very careful as they told me to.

> My big weakness is coffee (just a cup in the am) and chocolate/sweets.

> My nutritionist said a little caffeine doesn't hurt, but I wonder if

> anyone else has a different perspective.

>

> Have a great rest of your day...

>

> Jean

>

>

>

>

[Guest guest]

I can't imagine those levels of prednisone but I can relate to the mustache!

Horray for waxing!

Patty

[ ] Re: JEAN

Oh Jan! You cracked me up! I love the not knowing if you are an

Arther or a Martha - oh how I can relate! When I was on 80 mgs for

two months, then down to 60 for the next 5 months, I was in the same

quandry. My mom suggested I get that Sally Hansen facial wax

strips. I do. I put this piece on my lip as big as one whole side

of my lip. Then RIP! Definately can not repeat the word that the

people in the next county heard me screaming. (Sorry Ruth - it was

me!) She never told me to use narrow strips. After that, used nair

or just a plain old razor. Thankfully it as all gone now. Good

thing, my brother was geting jealous that my beard was coming in

better than his.

Love,

Carole K

[Guest guest]

Hi Jean: My daughter, Jodi takes Prograf post-transplant and yes it is very expensive, $900 every three months. Thank God she gets it from her insurance company which makes her CO-pay is $300.

Just so you know, the Prograf gives Jodi headaches. We were hoping she would be able to decrease it by now but she's still having to take four in the morning and four in the evening. They did decrease her Medrol to three times a week. Medrol is basically the same as Prenisone. She also takes Bactrim three times a week.

I hope you get better soon.

Genny/Jodi's Mom

living donor transplant 5-18-01

[Guest guest]

Genny, That is a lot of prograf. Have they discussed Rapamyacin with Jodi?I understand the UM Dr's are using it in cases where prograf doses are high. Does Jodi have problems with her blood pressure at those levels? And, you haven't said... how are YOU?

Patty

-----Original Message-----From: Nannygenny@... [mailto:Nannygenny@...] Sent: Friday, March 07, 2003 11:38 PM Subject: Re: [ ] JeanHi Jean: My daughter, Jodi takes Prograf post-transplant and yes it is very expensive, $900 every three months. Thank God she gets it from her insurance company which makes her CO-pay is $300. Just so you know, the Prograf gives Jodi headaches. We were hoping she would be able to decrease it by now but she's still having to take four in the morning and four in the evening. They did decrease her Medrol to three times a week. Medrol is basically the same as Prenisone. She also takes Bactrim three times a week. I hope you get better soon. Genny/Jodi's Mom living donor transplant 5-18-01

[Guest guest]

how is your daughter doing?

________________________________

From: Jeannie Sheehan <fgigles55@...>

Sent: Thursday, May 28, 2009 8:16:40 PM

Subject: Re: [ ] nurses and needles

Hi ,

The purpose of my quesiton wasn't to put down nurses, I just wanted to

know if the pain my dd was experiencing was normal. The pain wasn't from

the needle prick and it hurt for quite some time after the shot was given.

My daughter has had injections of medications before and recieved allergy

shots for a while and nothing caused her the pain these shots did. I just

wanted to make sure it wasn't something I should be concerned with.

I am also very grateful that my daughter is able to receive these shots

and know there are many who aren't so fortunate. Jean

On Thu, May 28, 2009 at 5:57 PM, <carrie72583@ .ca> wrote:

>

>

> Hello,

>

> I am a nurse and a moderator of this board. I would like to take this

> chance to thank all the nurses out there, my colleagues and others, for

> their dedication to the profession in honour of Nurses' Week (ok it was last

> week). It goes without saying that there are good nurses and bad nurses

> just as there are good lawyers, bad lawyers, good mechanics, bad mechanics.

> No certified nurse would use an 18 guage needle to inject subcutaneously.

> They would have to use it like a dart gun if they were going to do so. Let's

> face it. Injections hurt. Not all the time but they do involve sticking a

> foreign object and a foreign substance into a space that is not really

> designed for this. The pain is generally short lived. I think we should all

> be pleased to bits that we have access to this medication in the first place

> and focus on all the great things it allows us to do. There are many, many

> people out there who would give their right arm for access to the

> care we have so I think we need to put things into a bit of perspective. As

> things go, we generally are all very lucky.

>

>

>

> ____________ _________ _________ _________ _________ _________ _

> Make your browsing faster, safer, and easier with the new Internet

> Explorer® 8. Optimized for Get it Now for Free! at

> http://downloads. / ca/internetexplo rer/

>

>

[Guest guest]

Hi again if you put Energy Soup in your browser it will take you to the site that will tell you all the great benefits of this "soup" Have a great week everybody. jean

hepatitis From: McLR53@...Date: Sun, 28 Jun 2009 10:15:41 -0400Subject: RE: [ ] Jean

Hello again: DUH!!! My bad in my haste to get ready for church and get the note out I forgot to put the recipe here. Also, only had one cup of coffee. Sorry. Ok here's the Energy Soup recipe 2-3 Garlic cloves1-2 handfuls of baby Spinach1-2 cucumbers1 handful of cilantro1-2 celery ribs 1 avocado (more if you like it... it has healthy fat) blend with water also alittle lemon juice and a handful of sprouts if you have any... you can make this in your mixer.....

From: walter_scheu@...Date: Sun, 28 Jun 2009 06:08:47 -0700Subject: [ ] Jean

Did I miss something?Where/what is the soup????????

From our home to your home, we pray and speak blessings, success and prosperity.Walter L. Scheu, Sr., Th.D.RCFC

From: McLaren <McLR53@...>Subject: RE: [ ] Let The Juice Beginhepatitis Date: Sunday, June 28, 2009, 8:59 AM

This recipe is called soup, however you drink it like a juice a small glass a couple times a day. This was given to my by a PA in my daughter's practice. My hubby has HCV and Cirosis. This lady was very ill and began to drink the concoction and now is the picture of health. We also make juice from just about any kind of fruit. We use apples, oranges, celery, pears and just blend to your taste. It is oh so good. We also juice raw beets and add sparingly to each individual glass. I do not like it, my hubby however enjoys it. I have tons of recipes for juice so feel free to inquireThanks jean > > From: walter_scheu> Date: Sun, 28 Jun 2009 10:53:17 +0000> Subject: [ ] Let The Juice Begin> > We are not on a juice program for all of the good reasons.> > Any juice formulas that you folks use Are gratefully requested> > > > > ------------ --------- --------- ------> >