Good News

[Guest guest]

----------

Athie,

I notice the " smelly " urine, but as I have said before, I take cyclosporin

and that in itself is extremely " smelly " , so I guess it doesn't surprise

me that I have smelly urine. I (only me, I have asked others and they can't

smell it) can smell it coming out of my pores in my skin. Nobody else can

though.

Sue B.

[Guest guest]

I'm relatively certain that my platelets are checked each time I have labs

done. My new doctor, in fact, specifically expressed concern about the

possibility of a low platelet count. I'm scheduled for labs in 2 weeks -

which will be 6 weeks from the last check. I'm continuing to bruise very

easily and everytime I turn around a new and mysterious bruise shows up.

With all of the meds most of us are taking, I wonder if the meds might be

contributing to the easy bruising, not just the liver disease? My skin is

now so thin, a Band-Aid will take away a strip of my skin when it's removed

and I ask lab people to use the paper band aids instead of the usual lasix

type. I'm also lasix sensitive, which doesn't help. A few weeks ago when

I had a procedure requiring an IV, the needle left a large track of bruises

on my arm. Living here in " sin city " I'm often worried that people think

I'm a druggie or something, with those purple track marks on my arm most of

the time. But, I look far too " mature " and sedate for that, I hope!

Take care,

Geri

[Guest guest]

Geri,

Thanks for the congrats on my prednsione-free state. Last Nov my enzymes

were very high, in the 200's and the doc started me on Imuran combined with

the pred. (Up to that point I had only been on prednisone and then weaned off

completely.) My body responded quickly and I had normal enzymes in the teens

with two months. He then started weaning me off the prednisone about the

first of March. The first of July I got off the prednisone completely. I

know that I'm not home free. He did warn me that this is a trial and that it

is very possible for me to have a relapse. So far so good and now I really

need to continue being vigilant with my new life style (i.e. low stress, no

alcohol, exercise, and good eating habits). It sounds simple doesn't it?

But I struggle with being completely consistent with all these things. I've

been doing very well in the low stress category but with some of the others I

have slipped here and there. I have been eating a lot of sweets and putting

on weight. I don't have the prednisone to blame now either. Also the other

night I had several glasses of wine with dinner here at home. I know I

shouldn't have and I felt some guilt for it afterwards. It is so hard to be

consistently good and resist these earthly temptations.

Great hearing your encouraging words again,

Roxanne

[Guest guest]

Dear Athie:

I agree that there have been times that I've been tempted to drink. Not so

much for the taste as for the 'forgetful' affect. There have been many times

that I've just wanted to 'forget it all.' However, I never give in. For the

most part I think of alcohol as toxic poison and would no more drink it than

I would Clorox. It is so bad for the liver that I just won't take the

chance.

Now, if I could only get there with sugar.........!

Kathy (AIH)

Seattle area

[Guest guest]

Hi Roxanne,

I know how you feel about drinking the glass of wine and feeling guilty

about later. Before my illness I never was a big drinker at all. Would

always get an iced tea because I like the taste better. BUT, since my

illness I have this desire to have a drink with friends when we are out for

dinner . It seems i can crave a Margarita! I think it is because I know I

can't drink which makes all the more desirable. Anyone else feel this way?

And If I do have the occasional drink is it REALLY that bad?

Athie

AIH Ohio

Re: [ ] good news

> From: CREE8V1@...

>

> Geri,

>

> Thanks for the congrats on my prednsione-free state. Last Nov my enzymes

> were very high, in the 200's and the doc started me on Imuran combined

with

> the pred. (Up to that point I had only been on prednisone and then weaned

off

> completely.) My body responded quickly and I had normal enzymes in the

teens

> with two months. He then started weaning me off the prednisone about the

> first of March. The first of July I got off the prednisone completely. I

> know that I'm not home free. He did warn me that this is a trial and that

it

> is very possible for me to have a relapse. So far so good and now I

really

> need to continue being vigilant with my new life style (i.e. low stress,

no

> alcohol, exercise, and good eating habits). It sounds simple doesn't it?

> But I struggle with being completely consistent with all these things.

I've

> been doing very well in the low stress category but with some of the

others I

> have slipped here and there. I have been eating a lot of sweets and

putting

> on weight. I don't have the prednisone to blame now either. Also the

other

> night I had several glasses of wine with dinner here at home. I know I

> shouldn't have and I felt some guilt for it afterwards. It is so hard to

be

> consistently good and resist these earthly temptations.

>

> Great hearing your encouraging words again,

> Roxanne

>

>

>

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

[Guest guest]

Kathy,

Thanks for the encouragement!

Athie

AIH Ohio

Re: [ ] good news

> From: KATBERCOO@...

>

> Dear Athie:

>

> I agree that there have been times that I've been tempted to drink. Not

so

> much for the taste as for the 'forgetful' affect. There have been many

times

> that I've just wanted to 'forget it all.' However, I never give in. For

the

> most part I think of alcohol as toxic poison and would no more drink it

than

> I would Clorox. It is so bad for the liver that I just won't take the

> chance.

>

> Now, if I could only get there with sugar.........!

>

> Kathy (AIH)

> Seattle area

>

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

[Guest guest]

Kathy, right on. I have no problem passing up liquor, but sugar and goodies! I

am still working on my diet tho, so I am still praying! Lynn aih

KATBERCOO@... wrote:

> From: KATBERCOO@...

>

> Dear Athie:

>

> I agree that there have been times that I've been tempted to drink. Not so

> much for the taste as for the 'forgetful' affect. There have been many times

> that I've just wanted to 'forget it all.' However, I never give in. For the

> most part I think of alcohol as toxic poison and would no more drink it than

> I would Clorox. It is so bad for the liver that I just won't take the

> chance.

>

> Now, if I could only get there with sugar.........!

>

> Kathy (AIH)

> Seattle area

>

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

[Guest guest]

Roxanne,

I was absolutely ready to let my new doctor suggest I could go off

Prednisone when I saw him last Friday. The last time I saw him, a few

weeks ago, he suggested that it might be a possibility. He read my full

medical file and changed his mind, which leads me to believe that they see

something in some of our records that rule out total stoppage of

Prednisone, darn it. I envy you so much and I'll be cheering for you. I

hope that you're one of those who can successfully stay off the stuff.

I have no idea why I haven't been told I can't drink. Maybe they just

assume I don't. I had a MaiTai a few weeks ago. I like them when we have

Mexican food. I doubt there's more than 1/4 oz. of rum in the drinks they

pour at the Mexican restaurant where we order them. I also happen to love

" fine " white wines. Tonight I shocked my hubby by going through some wine

recommendations in " Food and Wine " magazine and suggesting we try to find

some of those that were praised. I haven't had a glass of wine in almost 2

years! But, our son is coming to visit for the Christmas and New Year

holidays and I want to toast the year 2000 with at least a sip of wine or

Champagne. Last holiday season, I also had a hot buttered rum and enjoyed

every sip.

It's the idea of having at least a touch of a normal life, if only for a

few minutes a year. I know exactly how you feel. Also, I'm not as worried

about a few drinks a year hurting me as I am about the damage the meds I'm

taking might be doing.

However, I absolutely wouldn't advocate an occasional drink for any of us

with liver disease anymore than I'd serve candy to a diabetic.

Stress is one of those things that you can't always avoid. I figure

there's unavoidable stress and avoidable stress. When the avoidable type

rears it's ugly head (a visit with an unpleasant family member, for

example) I opt out of the picture. I was a regular for years on the

Compuserve European Forum and when a group I knew both online and in person

began expressing political views that I totally disagreed with, I cancelled

my subscription, though I really was fond of those people.

I'm still trying to figure out what to do about exercise. Today my legs

ached so badly all day I could hardly walk. At least my eating habits

aren't too terrible. Probably not that great either.

I think that most of us have good instincts for self preservation. With

the help of your family and the direction of your doctors, I know you'll be

okay. Just don't have a relapse. I want to see total remission for all of

us. What a lovely goal.

Take care,

Geri

[Guest guest]

Hi All,

Just wanted to report some good news to give everyone some hope & some new

insight into treating lyme...

I'm sure many of you have tried virtually everything to treat this insiduous

disease, but for those of you who haven't... (VBG!)

Daughter had a Voll test - an electrical test to check her acupuncture

meridians (by holistic doc). Found many of her meridians were " split " - with

one side of body having different reaction from the other. (Should be the

same, within a certain range.)

After 1st acupuncture treatment to balance her meridians (after above test) &

being on protein/carbohydrate drink mix to " reset " hormone levels to normal,

thereby reducing inflammation - her eyelids look NORMAL! And she feels the

best she's felt in a few months - " almost normal. " Tons of energy. (Still

brain foggy, though.)

She was able to play her trumpet yesterday WITHOUT getting lightheaded!

Thank God - this means that this damage is NOT permanent! YEA!!!!!!

BTW, no interest other than to share what's working for us! I never would've

believed a drink mix could make such a difference!

Also, acupuncture works on autonomic (or automatic) nerves which control

breathing, heart rate, blood pressure, etc - all of the " involuntary " body

functions.

Hope this offers some insight & hope to all!

Blessings

Chris

[Guest guest]

that is GREAT news !!! I'm so happy for you guys : )

I'd love to try that .Where are you from ?

[Guest guest]

In a message dated 99-11-29 14:59:49 EST, you write:

<<

that is GREAT news !!! I'm so happy for you guys : )

I'd love to try that .Where are you from ?

>>

Hi ,

We're in the Chicago area - how about you?

ALso - just got positive antibody for babesiosis -- help! (Test done by

Igenix - result was 1:80 (<1:16 is considered negative).

Okay, kind folks, does anyone have info on babesiosis?

Thanks!

Chris

[Guest guest]

Thanks for telling us what worked for your daughter, I only pray it

continues. Keep us posted,.

Hugs,

Marta NJ

-

>From: DobeLovr1@...

>

>Hi All,

>

>Just wanted to report some good news to give everyone some hope & some new

>insight into treating lyme...

>>Daughter had a Voll test - an electrical test to check her acupuncture

>meridians (by holistic doc). Found many of her meridians were " split " -

with

>one side of body having different reaction from the other. (Should be the

>same, within a certain range.)

>

>After 1st acupuncture treatment to balance her meridians (after above test)

&

>being on protein/carbohydrate drink mix to " reset " hormone levels to

normal,

>thereby reducing inflammation - her eyelids look NORMAL! And she feels the

>best she's felt in a few months - " almost normal. " Tons of energy. (Still

>brain foggy, though.)

>

>She was able to play her trumpet yesterday WITHOUT getting lightheaded!

>Thank God - this means that this damage is NOT permanent! YEA!!!!!!

[Guest guest]

Thanks to you both, good news, got my Brain MRI report yesterday from the

doctors office,( didn't see him, just had blood drawn) and it showed two

more areas of lesions....I know that is not good really, but when you are

trying to get IV treatment, every little bit helps. The staff did tell me

the doctor had not seen the report yet, so I do hope I am not

misinterpreting the medicalese jargon, but it looks bad to me, which is

good. What a strange world we live in, when you have to have tests results

showing deterioration before you can get proper treatment.....I have an

appt. with my doctor on the 10th, so I will let you know how I make out.

Hugs,

Marta NJ

>From: " F. Mott " <smott@...>

>

>beth wrote:

>>

>> Have a wonderful birthday today, Marta. I'll pray especially hard for

>> your healing today. You're a woman with a beautiful and wise heart.

>>

>> Hugs,

>>

>> beth

>Dear Marta: That goes double from me!!

>

>Lovette

[Guest guest]

Hi Marta,

Well, I know exactly how you feel...happy that your Brain MRI showed

more lesions.

My Brain Spect Scan came out terrible, and I was happy. Of course after

the initial happiness, some depression did set in.

Our medical system is pitiful.

Take Care,

Joan LI NY

[Guest guest]

In a message dated 1/12/00 4:01:21 AM !!!First Boot!!!, cate@...

writes:

<< After I started taking the trace minerals as recommended by , my

irritability went away. I felt like *everything* irritated me before

this. There was just a constant tension, and irritation, and I was

rage-ready.

The last ten days have been great. Nothing has irritated me, I haven't

felt stressed, and I haven't felt tense. After the occasional

situation that legitimately raised my ire, I calmed down *immediately*.

It seems like years since I felt this calm. I love it!

Cate >>

Hi Cate,

I really want to know the brand name of the trace minerals that you've

been using. I've experimented with several different brands and am pretty

sure that they are all different. When I look at the analyses they also

appear different.

I would like to find out what ones people find benefit them the most, so

anyone else who has information on this, I'd also be interested. If we can

find the ones that work best, then we might get closer to determining exactly

which of the many ultratrace elements are responsible and then get these in

higher doses to make the recovery faster. Thanks,

[Guest guest]

Obviously the format has changed on how we now receive correspondence since the

last time I verified. I receive attachments when I used to receive the

correspondence. Anyone know why ?

BU007@... on 01/13/2000 10:50:09

Please respond to hyperthyroidismegroups

hyperthyroidismegroups

cc: (bcc: Nardone/nar0002/CPR)

Subject: Re: Good News

In a message dated 1/12/00 4:01:21 AM !!!First Boot!!!, cate@...

writes:

<< After I started taking the trace minerals as recommended by , my

irritability went away. I felt like *everything* irritated me before

this. There was just a constant tension, and irritation, and I was

rage-ready.

The last ten days have been great. Nothing has irritated me, I haven't

felt stressed, and I haven't felt tense. After the occasional

situation that legitimately raised my ire, I calmed down *immediately*.

It seems like years since I felt this calm. I love it!

Cate >>

Hi Cate,

I really want to know the brand name of the trace minerals that you've

been using. I've experimented with several different brands and am pretty

sure that they are all different. When I look at the analyses they also

appear different.

I would like to find out what ones people find benefit them the most, so

anyone else who has information on this, I'd also be interested. If we can

find the ones that work best, then we might get closer to determining exactly

which of the many ultratrace elements are responsible and then get these in

higher doses to make the recovery faster. Thanks,

eGroups.com Home: hyperthyroidismwww. - Simplifying group communications

[Guest guest]

Charlene

great i am happy for both of you

Robbin

[Guest guest]

Charlene,

Please give Chyanne a nice big, warm, gentle hug from me I'm so happy

to hear that the eye appt went well. And to have good news about a

decreasing SED rate, on the same day, definitely is wonderful news!

Thanks for sharing with us.

Aloha,

Georgina

[Guest guest]

Clyde;

That is great news regarding the biopsy. I know they will find out soon

what is causing the attacks.

Liver function numbers are great! Congrats!

I have a question - has your doctor said that some times the liver

numbers will rise and fall and that's normal? What I mean is - my

doctor said back in June that my numbers were good. I agreed with him.

They were just barely over the limit. 0-45 was the range and my numbers

were about 47.

Well my last visit a couple of weeks ago my numbers doubled. Now they

are in to the 80's. He said that's okay and to expect them to be like

that.

THis is the confusing part. Not just one year ago, when my numbers were

in the 80's it WAS NOT okay with him and my medicine was adjusted

higher.

THis time, he didn't want to adjust the medicine (eventually he changed

his mind and did adjust to a higher level the imuran).

I just don't get it. Am I missing something?

Thanks for any input

Sue

AIH Colorado

C C McPherson wrote:

>

> I got good news today on my heart biopsy - it's not autoimmune related -

> The bad news is that they still don't know what is causing my attacks!

> Also my liver function numbers are 22 & 26 :-D

>

> -Clyde

>

>

>

[Guest guest]

Congratulations on your liver function numbers! I can barely

remember life with low LFT's like that. I was celebrating getting

down to 110 this week and hopefully I'll follow your example. And

perhaps your heart attacks will have an easier fix since they are not

autoimmune related. What do they intend to try next to pinpoint the

cause?

Patty O'

--- C C McPherson <ccmcphe@e...> wrote:

> I got good news today on my heart biopsy - it's not autoimmune

related -

> The bad news is that they still don't know what is causing my

attacks!

> Also my liver function numbers are 22 & 26 :-D

> -Clyde

[Guest guest]

HI Clyde;

I would be very careful with any stress test on the heart. Make sure

it's done with doctors right there.

I wished I had your 120/80 blood pressure. Yesterday when I was in the

ocon/hepa docotor my reading was 173/101. He didn't say a word about

the numbers!

Remission can be on different levels from what I understand. There is a

biological one, a medical one (I think). The medical one is remission

with medicine. The biological one is remission without medicine.

Sue AIH

Colorado

C C McPherson wrote:

>

> They are in complete confusion. Normal (before attacks) BP is 80/60

> (low) now 120/80, normal heart rate resting is 36 - been like that since

> high school (many many years). Angigram was very clean. The only

> problems they can find is the minor heart damage I got from rheumatic

> fever, when I was a kid. The next round of tests is a stress test done

> with injection, and probing the heart like during a angigram (i forget

> what they call it). With my LFTs normal, does that mean I am in

> remission??

>

> -Clyde

>

>

>

[Guest guest]

They are in complete confusion. Normal (before attacks) BP is 80/60

(low) now 120/80, normal heart rate resting is 36 - been like that since

high school (many many years). Angigram was very clean. The only

problems they can find is the minor heart damage I got from rheumatic

fever, when I was a kid. The next round of tests is a stress test done

with injection, and probing the heart like during a angigram (i forget

what they call it). With my LFTs normal, does that mean I am in

remission??

-Clyde

[Guest guest]

Clyde:

That's great! It's wonderful to hear that you are doing better. Do

you feel better as well? Keep up the good work.

Kathi

[Guest guest]

Clyde

Congratulations on your lft numbers!

Loes, Aih, The Netherlands

[ ] Re: Good News

> Clyde:

>

> That's great! It's wonderful to hear that you are doing better. Do

> you feel better as well? Keep up the good work.

>

> Kathi

>

>

>

>

[Guest guest]

Kati:

Even with my new heart problem, yes I feel really good. I haven't felt

this good in years. As much as I hate prednisone, I guess I can't live

without it.

-Clyde

kathiruud@... wrote:

>

> Clyde:

>

> That's great! It's wonderful to hear that you are doing better. Do

> you feel better as well? Keep up the good work.

>

> Kathi

>

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>

>

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