GREG

[Guest guest]

Words cannot express how much I appreciate your response. It included a

great deal of good advice and insight. Laurie is active in this group...we

both send questions and comments as well as discuss the group comments with

each other. Her doctor started her on 40mg Prednisone almost two weeks

ago...and, like I said, she is now feeling more tired and having more pain

than in the beginning. I think she is scheduled to have blood tests next

week.

Thanks again to EVERYONE for responding to my posts...you really have helped

a great deal.

Greg in Sidney, OH (Laurie's Husband)

[ ] Greg

> Dear Greg,

>

> I haven't talked to you before, but thought I would put in my own

> thoughts on your wife. I am sorry she has had to go through so

> much. It is very difficult when you know you have had problems,

> surgeries, and just haven't felt healthy for years. When you finally

> get the Dx of AIH, you are in a sense releived. I have been through

> very similar things as your wife. The hysterctomy for me at age 25.

> Any way, I don't want to bore you too much with my past.

>

> I am not totally filled in on your wifes condition, but have seen the

> doctor wants to boost the pred to 40 mgs. I know this may seem like

> bad news. But if she really has not progressed and is not feeling

> any better, I think it is probably a good idea. First of all, when

> you start pred. you usually get a 'feeling of well being' as my

> doctor put it. It isn't until 3, 4, or even 5 weeks later that the

> really bad side effects kick in. They are also looking for the

> AST/ALT and total bilirubin to drop rather quickly at the beginning

> of treatment. I am guessing your wifes blood work was not showing

> the kind of progress they had hoped for initially. (She is getting

> blood work at least every two weeks right now?) Though I am no

> expert at what 20 mgs is supposed to do or feel like. I am usually

> happy to have been dropped down to it when I have been on it, and

> have my side effects reduce greatly. With my flares I have had to

> start out at 80 mgs in the beginning - My ALT/AST levels run in the

> high thousands at flare ups.

>

> Any way, what I want you to know is what to expect here in the

> beginning and following months ahead. I know from my own experience

> it is impossible for my family to have an understanding to how I

> feel. But I can get close. You [the patient] become your own worst

> enemy. You feel worse than you could ever imagine feeling, and ever

> want your worst enemy to feel. I liken it to waking up every day

> feeling like you have a bad case of the flu. You know when you have

> the flu, and your whole body aches from fever, and you just can't

> bring yourself to get out of bed to go to work? That is much like

> how we feel everyday. Imagine how you did feel the last time you

> were really sick, and then try to imagine what it must be like to

> always feel that way. It is very hard on you psychologically. Don't

> get me wrong, we have days that are good and days that are bad. We

> learn how to 'push threw' the ill feeling. But some days it is

> easier to do that than others. In the beginning too, as you may have

> noticed with your wife, is the feeling of despair over never being

> what you used to be. Not knowing there was a light at the end of the

> tunnel myslef, was the hardest part. (I was Dx in 1999, and did not

> find this support group until August of last year. It was very

> difficult not knowing anyone else with the disease all that time.)

>

> Now, you being a man (and from Mars!) your biggest feeling right now

> is to do what you can to 'fix' this for her, am I right? And feel

> helpless because you can't. There is a way to make things easier for

> her though. Be there for her. Not too much, but when she needs

> you. On the days it seems like all she does is sleep, be

> understanding to that. My husband was of the beleif that if I just

> got up and moved around an exercised, I would get better. Well, when

> you are on higher doses of pred. your joints start to feel like the

> are so tight, it is impossible to walk or stand any more than a few

> minutes at a time. Making it very difficult too to take care of your

> home and family as you used to. One of the best things you can do is

> you and your daughter keep things together for her. Having to look

> at you house fall apart, and not have what it takes to do anything

> about it is very hard on you emotionally. And it is the emotional

> part that is the hardest in this. And if she has had all that you

> say go wrong in the last years, she is also feeling bad over you and

> your daughter having to watch her go through more. I have periods

> where I hate myself for the burden I have cuased to my husband

> especially. I can't work any more, I was turned down for disability,

> and we have lost pretty much everything due to medical bills. I feel

> very often like I am more harm to my family than good. Don't get me

> wrong, I know most of the time that is not true. But when you go

> days and days feeling like the walk to the bathroom has taken all of

> your energy, your mind tends to play nasty games on you. So, what I

> am trying to say is this: She is going to get depressed. Possibly

> severely. The prednisone cause mood swings and can cause depression

> all on its own. Couple in feeling really lousy, it is very easy to

> get depressed. Watch her, if she does appear to be, please , please,

> both of you do not hesitate to get help and possible get some

> antidepressants to get though the beginning of all of this. I

> fianlly did about 6 months after Dx, because I just couldn't open my

> eyes with out crying. Yes, your wife is going to go up and down with

> how she is feeling physically, but it is her mind that will get her

> through this. That is were you can be the biggest help. Yes, she

> most likely will gain weight. Especially in her face and neck.

> Please let her know daily you still find her beautiful. Do all you

> can to keep her from feeling bad about herself. Do what you can to

> help her see all her blessings in life. But not being too pushy with

> it either. Some times us ladies just need to be left alone to go

> through a good cry. If you are confused about what she needs from

> you at any given moment, just ask her what she needs from you. Most

> of all, be patient with her, because she will ride an emotional

> roller coaster for a while.

>

> I don't know if this helps you any, but I hope it does. Because I do

> think the emotional part of this is the hardest. One last thing too,

> please ask your wife to join us too. Nothing can compare to talking

> to people who are going through what you are going through. With the

> amount of people on this group, guarenteed what ever she may be

> experiencing, some one is or has experienced it too. Wish her well

> from me, and if she would feel more comfortable in the beginning,

> many of us would be more than happy to talk in our private emails.

> Good luck to you both.

>

> Love and prayers,

> Carole K

>

>

>

[Guest guest]

Hi Greg!

See what I get for skipping ahead on my message reading? I am sorry,

I didn't see that your wife was on here too. I have been 'away' for

a while due to internet and computer problems. Well I guess you get

to know right off what a dork I can be!

You know, I didn't have pain in the beginning either. I remember the

docs, as I lay there in liver failure, asking if I had muscle or

joint pain. I didn't. Not in the joints, or liver area. It wasn't

until I was on the steroids for a bit that I did. But now that I

think about it, they did warn me that I would feel much worse before

I felt better. I was initially sent home with a scrip for codeine,

and it sat it my cabinet for some time before I needed it. Naproxyn

took care of it all pretty good in the first weeks. Now I am on a

steady dose of codeine for pain. It seems that some of us have it

chronicly and some have none. In my case, my new hep thinks I have

been 'under diagnosed'. He beleives the pain is because I have lupus

also, but wants me to see a rhumetologist about it. I guess they are

more well versed in the disease. But he also warned it is not easy

finding a good rhumetologist, at least in my area. Is her pain just

in the area of the liver, or in her muscles and joints also? I'm

sorry if I am making your repeat facts, like I said I was MIA for a

while. But I can sympathize with the pain issue. Some days it is so

overwhelming. You just don't want to get up and move at all. It is

hard, especially when so few deal with the chronic pain. Doctors

tend to think you are a 'whiner' since it is not usually a complaint

by most. But one of the best things I learned on here was I am not

crazy, others go through it too. My old doc treated me as if I was

some narcotic seeking baby. I kept trying to tell him that on the

contrary I want him to come up with something so I don't have to take

pain meds. They make me sick, so I have to really need them before I

take them. What I can tell you - if it is her joints - is ice works

well at times. Heat actually made mine worse. My husband used to

try to get me to soak in the hot tub with him, because that is what

helped his knees. But the couple of times I did, I came out hurting

even worse. I also get a steroid shot in my hips about every 3 or 4

months. When I start needing the cane to walk, I know it is time for

the shot. I hope Laurie feels a little better soon. It is those

tiny steps of progress that keep you going when you feel so lousy.

On the fatigue issue. well, I have never had that improve. I have

learned to rest up ahead of time when I am planning something big

that will need my energy. I have learned that no matter how much I

try to fight it I have get at least 14 hours sleep a day. Whether it

is straight or in a nap or two, my body will force me to get this

amount of sleep. When I fight it for a couple of days, I get sick.

So tell her to do what her body tells her, and to NEVER feel guilty

about it.

I look forward to hearing she is doing better soon. She is in my

thoughts.

Love,

Carole K

[Guest guest]

I am posting much more than Laurie because she is working 8 hours/day, and

resting when possible. Laurie has been on the initial dose of Prednisone

(40mg daily) for about 1-1/2 weeks...She called doc's office...they said

everything is normal....back and liver pain, weight gain, tiredness...will

be getting another blood test in about a week. I wish I could believe them.

Laurie also had one incident of pancreatitis a few years ago, but doc says

he will try Imuran when Prednisone gets levels down.

Greg in Sidney (Laurie's Husband)

Re: [ ] Greg

Greg,

I think Jan's advice is good. How long has Laurie been on the prednisone?

I'm sure you said but I forgot. Because my biopsy revealed more damage than

some of the others in the group, (stage 3 fibrosis - bridging portal-portal)

I was first concerned that my doctor started me on a lower dose of

prednisone than most and didn't put me on imuran at all. However, I guess

she knew what she was doing because 2 1/2 weeks after beginning only 20 mg

prednisone daily my liver enzymes were near normal. They were checked a

week ago and were normal. I'm now tapering the prednisone down. I don't

think they will put me on Imuran at all because I have a history of

pancreatitis and Imuran can cause pancreatitis. My rheumy has also said she

doesn't want me on any more prednisone than is absolutely necessary as

prednisone also has a risk of causing pancreatitis. However, my GI says the

risk of pancreatitis from prednisone is VERY slight, even in someone with a

history of pancreatitis.

I can't imagine how being on 40 mg of prednisone a day would make me feel as

20 mg a day was bad enough! However, for me, I had a period of feeling

great for a couple of weeks after being on the prednisone for just a few

days.

How high were Laurie's liver enzymes at the time they diagnosed her with

AIH? Maybe part of the reason they started me on a lower dose was because

my liver enzymes didn't just go up and stay up. Mine ranged from normal (a

time or two in the last several months) to almost 800 on December 5th. I

began prednisone on Jan 8th. On Jan 11th, my AST was 337 (normal is 10-30)

and my ALT (normal is 10-36) was 177. On Jan 25th, (2 1/2 weeks after

beginning prednisone) my AST was 22 and ALT was 41.

Both my GI and my rheumy were absolutely thrilled that my liver enzymes came

down so quickly. Because of my history of pancreatitis, my labs are checked

pretty often since I keep having attacks of severe right upper quadrant

abdominal pain. They have to do blood work when the episodes are severe and

last longer than a couple hours, just to make sure it is not an attack of

acute pancreatitis severe enough to warrant keeping me in the hospital on IV

fluids with nothing to eat or drink. My liver enzymes were checked again on

Jan 29th, AST was 43, ALT was 63. On Feb 6th, AST was 30, ALT was 56. On

Feb 19th, they didn't tell me the numbers, but said both the AST and ALT

were normal.

I may not be a typical case and I may also be in a state of false security.

Maybe my liver is still being damaged even more despite the AST and ALT

looking so good. I guess time will tell.

If the prednisone is making her nauseated, you might ask the doctors to

prescribe phenergan. Also, I found some lollipops designed for pregnant

women that are a great help with the nausea. They are called preggie pops.

They come in different flavors but I like the ginger best. They end up

costing about 45 cents (with shipping) each if you order the largest

quantitiy. The web site is www.preggiepop.com. They only take about 3-4

days to arrive after you order them. Sometimes they work better than

phenergan. However, sometimes absolutely nothing helps with the nausea.

I was already on lasix 20 mg a day because I've had problems with fluid

retention, which, by the way, the doctors totally blamed on obesity. Guess

what, losing 100 lbs did VERY little to reduce my problems with fluid

retention. Even before prednisone, without lasix my hands would swell to

the point that my rings would get stuck. With the lasix, my rings are loose

enough that they will fly off my fingers when my hands get cold if I am not

careful. Anyway, I think the lasix is part of the reason I've not had major

problems with fluid retention from the prednisone. Of course, I was only

half the dose that Laurie is taking, so I'm sure that made a big difference,

too. I don't know if adding lasix to the mix to help with some of the fluid

retention is a good idea, but maybe you could just ask the doctor.

Also, I didn't even think about checking my blood pressure until I had been

on prednisone for about 3 weeks. I should have been checking it from the

beginning since I had pretty severe hypertension prior to losing 100 lbs.

Prior to prednisone, my BP was often running a little low - normal for me

was around 100/60. The first time I checked my BP after going on prednisone

it was about 140/89. After just a few days of monitoring my BP and seeing

that it was only going higher (very slowly but a touch higher each day), my

pcp put me back on a low dose of BP med (atenolol 25 mg). Adding the BP med

brought my BP back to the normal range. I checked it just now and it was

114/77. I may be extra paranoid about BP since I have a family history of

strokes, heart attacks, blood clots, heart disease and I have a clotting

disorder.

I am certainly not a doctor and am very new to AIH. I know different

doctors often do things differently, but I certainly think it is within your

rights to have Laurie's doctors explain things, such as

why do they want her on 40 mg of prednisone daily?

how long do they intend to keep her on that dose?

when do they plan on checking her liver enzymes again?

I hope I don't come across as a know it all, since I certainly do not know

nearly as much as I feel I should about AIH and the liver. I just wanted to

share my personal experience thus far.

W

[Guest guest]

Carole...that's not why your husband tried to get you to soak in the hot

tub with him no matter what he says.

love jerry

[Guest guest]

Just very little. Seems like nothing has change. Actually, I'm hearing a lot

of high frequency and very weak on low frequency. I think I hear some echoes

while they just finished talking.

I'm having speech therapy tomorrow afternoon to find out how's my hearing. Then

I will e-mail to Cris about my hearing.

-gs

Greg Swager

HOH since birth

Surgery 02/05/03

Spring 03/03/03

[Guest guest]

Hi Greg,

This is what I went through as well. I think that many CI'ers have

this in the beginning. It'll get better!

<<Just very little. Seems like nothing has change. Actually, I'm

hearing a lot of high frequency and very weak on low frequency. I think

I hear some echoes while they just finished talking.>>

Nuked 9/28/00

Hooked 10/26/00

[Guest guest]

Greg,

If you haven't already read 's journal, this

would be a good time to do it. We do have it here in

the files so you can access it here if you want to.

Remember what we discussed on Monday. Like you

contact lenses - this is something you want to keep up

with. I know you will because you have such a spark

of enthusiasm. Do you have another mapping scheduled?

Alice

--- CI92000@... wrote:

> Hi Greg,

> This is what I went through as well. I think

> that many CI'ers have

> this in the beginning. It'll get better!

>

> <<Just very little. Seems like nothing has

> change. Actually, I'm

> hearing a lot of high frequency and very weak on low

> frequency. I think

> I hear some echoes while they just finished

> talking.>>

>

>

> Nuked 9/28/00

> Hooked 10/26/00

[Guest guest]

Hi Greg!

Welcome aboard! I think my last post to you got lost in etherland. I'm glad

you are planning on joining us and sorry about your job.

What are the ages of your children?

You are in the process of choosing the best doctors anywhere!

Hugs and blessings, Ann

[Guest guest]

Hey Greg, any friend of Missy Sue is a friend on this board! Welcome

aboard. Have you been monitoring us? You'll learn so much, we'll

answer your queries, and you'll hear many success stories, and NO

failures! It's a miracle surgery.

Bobbe -

Don't postpone joy. 1998 top wt. of 284.

03/12/03 268, 06/30/03 214 <54 lbs.>

If you can dream it... you can do it! God,

give me the dream that you planned for my life.

[Guest guest]

Hi Liesl,

I hdo not have anything but what my doc did for me.

I would be glad to share that with you.

Love

Marge

> Do you have the document or site on reducing prednisone? I can't

seem to

> locate it, thanks!!

>

> Liesl (Lee) Dutro, Marketing Coordinator

> hci

> 7011 Campus Drive, Suite 200

> Colorado Springs, CO 80920

>

> Visit our website at www.hciusa.com

>

>

>

>

[Guest guest]

Several have responded to this request privately, but if anyone else is

interested in this information, it can be found on the www.healingyou.org

webpage.

Ethel

rheumatic Re: Greg

> Hi Liesl,

> I hdo not have anything but what my doc did for me.

> I would be glad to share that with you.

>

> Love

> Marge

>

>

> > Do you have the document or site on reducing prednisone? I can't

> seem to

> > locate it, thanks!!

> >

> > Liesl (Lee) Dutro, Marketing Coordinator

> > hci

> > 7011 Campus Drive, Suite 200

> > Colorado Springs, CO 80920

> >

> > Visit our website at www.hciusa.com

> >

> >

> >

> >

[Guest guest]

Hi Alice:

Did Cris have a boy or girl?

Hal

[Guest guest]

Oh, must be few weeks early. She was planning to have March and April

off. I'll wait few more days in case she reply my e-mail. Otherwise I'll

call PEI.

I had with Vinita before when Cris was in ill last year, if I remember her

name correctly.

-gs

--

Greg Swager

gswager@...

[Guest guest]

In a message dated 6/5/2005 6:18:21 AM Eastern Standard Time,

writes:

I've personally had two sets of tests from other labs that were negative,

and only my IGeneX Western Blot IgM was positive. Thus, I'm constantly in

doubt about my diagnosis and looking for other ways to confirm it.

Greg

=============

HELLO, have you had any good results from your treatment? that would be a

confirmation. and you could always take the test again, u could use your

first initial and a different address on the application so they would not know

they already tested you, and check off alot less symptoms on the checklist

they enclose, and see waht it reads then,,,, BUT that would not be a 100%

definite either. ,,,,, hopefully you are feeling better with treatment, and

you

should know if all your symptoms match the lyme list of symptoms. Best

wishes.

[Guest guest]

greg go by igenex as they can test for more bands and

also test heavy for outer surface proteins then the

standard tests. I had profuse lyme and it was known

and still stonybrook was not picking it up...I would

just stay with the diagnosis and see what happens,,

eric

--- FindItOnTheNet@... wrote:

>

> In a message dated 6/5/2005 6:18:21 AM Eastern

> Standard Time,

> writes:

>

> I've personally had two sets of tests from other

> labs that were negative,

> and only my IGeneX Western Blot IgM was positive.

> Thus, I'm constantly in

> doubt about my diagnosis and looking for other ways

> to confirm it.

>

> Greg

>

>

> =============

> HELLO, have you had any good results from your

> treatment? that would be a

> confirmation. and you could always take the test

> again, u could use your

> first initial and a different address on the

> application so they would not know

> they already tested you, and check off alot less

> symptoms on the checklist

> they enclose, and see waht it reads then,,,, BUT

> that would not be a 100%

> definite either. ,,,,, hopefully you are feeling

> better with treatment, and you

> should know if all your symptoms match the lyme list

> of symptoms. Best

> wishes.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

joanne are u sure u have a medicaid card i thought that was only for low

icome recipients of social security disabilty. u get a medicare card

after being on social security disability for two years.

new question what are your thoughts on the shingles vaccine. i believe

my hep doc told me no not now as it does not have a track record. what

are the thoughts on this subject. i heard thru the grapevie the pbcers

digest members are all getting the vaccine. have a good week. marlene

Live well. love much, laugh often

[Guest guest]

I'd ask why no biopsy. From what I understand (bear in mind that I'm not a

medical professional), a biopsy is almost always done to diagnose AIH. That's

almost always, but NOT always.

If there is a clotting problem, a trans-jugular biopsy sometimes is done in

place of a percutaneous biopsy.

Reaction to Prednisone is a factor in making a diagnosis of AIH.

Harper

In a message dated 10/15/08 1:47:21 PM, openmindedmale36@... writes:

>

> They are going by her blood test.  They have refused to do a liver biopsy..

>

>

>

**************

New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & amp; more. Try it out

(http://local.mapquest.com/?ncid=emlcntnew00000002)

[Guest guest]

I'm concerned about her doctor; has she gotten a second opinion?

Blood tests are NOT definitive. For example, since I am AMA-negative,

it took four years to diagnose me with PBC as well as AIH, via biopsy.

On the other hand, some biopsy readings may not be definitive. When

Mayo reviewed my biopsy slides, they said I DID NOT have AIH, so my

gastro took me off my AIH meds. I got worse and lft's went through

the roof before my gastro put me back on AIH meds, which took me back

to MY 'normal'.

That's why second opinions are so important, and most of all, we can

tell some things by being familiar with how our bodies feel in various

cases, in various situations, and on different meds.

Just my experience,

Kay, TX AIH/PNC

[Guest guest]

nope. not taking any.

greg

>

> Greg:

>

> I'm wondering if this is a hormonal imbalance that is being aggravated by

> the Whey. This past 6 months I have given up totally using hormones and now

> I am VERY LOW, so this is just something I'm throwing out there to consider.

>

> Something else you might be taking as well?

>

> Bonnie

>

>

>

[Guest guest]

Greg, I wasn't suggesting that you might be taking hormones, I was

suggesting that you might be LOW in hormones.

Bonnie

_____

From: candidiasis [mailto:candidiasis ] On

Behalf Of dreaminginnoother

Sent: May 13, 2009 1:36 PM

candidiasis

Subject: Re: Greg

nope. not taking any.

greg

>

> Greg:

>

> I'm wondering if this is a hormonal imbalance that is being aggravated by

> the Whey. This past 6 months I have given up totally using hormones and

now

> I am VERY LOW, so this is just something I'm throwing out there to

consider.

>

> Something else you might be taking as well?

>

> Bonnie

>

>

>

[Guest guest]

I have heard it is very good at killing stuff off, but I took it everyday for

years and whatever was there is still there. Candex seems to kill more without

the anger issues and as I said, I always thought it was the whey till people

started talking about their problems with the oil a couple days ago. I would

have to test it again to see.

The SIBO one is the one I had, which came up negative. The other 3 don't seem

to really be the issue as I pretty much completely avoid them anyway.

greg

>

> Greg:

>

> You probably already know this but Coconut Oil is VERY GOOD at killing off

> bacteria and fungus, no matter where it is, so having it in your diet every

> day might make you feel better stomach-wise. Also you were saying that you

> didn't learn much from the Hydrogen Breath Test and there is also 3 other

> breath tests

>

>

> * <http://hydrogenbreathtesting.com/sibo.php> Small Intestinal

> Bacterial Overgrowth

> * <http://hydrogenbreathtesting.com/lactoseint.php> Lactose

> Intolerance

>

> Bonnie

>

> * <http://hydrogenbreathtesting.com/fructose.php> Fructose

> Intolerance

> * <http://hydrogenbreathtesting.com/sucrose.php> Sucrose Intolerance

>

>

>

>

[Guest guest]

Greg, would you mind trimming your posts,

rather than sending the entire thread back to the list? Just leave a line or

two to give context to your reply…such as how I trimmed below.

Thank you.

Sharyn

From: health [mailto:health ] On Behalf Of Greg

yes

--- On Mon, 5/24/10, Kathy <gobucks@...>

wrote:

From: Kathy <gobucks@...>

I am assuming this is eaten raw right?