Re: Digest Number 33

[Guest guest]

Been home with a 48-hour stomach virus, which complicates things--I'm on mtx,

a small dose of prednisone, and Voltaren SR--plus oral meds for diabetes, and

hypertension, plus Prozac. When my GI system is in bad shape, I can't

tolerate the meds--let alone solid food. And for awhile yesterday, I couldn't

even hold down water.

Luckily, I'm better today, and I've been able to take my meds. But what an

additional pain in the a** when you rely on these things to funciton and you

can't take them.

My PA was diagnosed about 13 years ago. Whenever the topic comes up with non-

arthritis patients, I always give them the same advice: if you're able,

avoid getting

arthritis!

RD

[Guest guest]

Graham,

I loved your story. Although I have AIH rather that PBC, I have all the

biliary reconstruction experiences after liver transplant and disintegrated

bile ducts. Keep your sense of humor. Note; my docs use Versed & Delodid when

they access my ducts. If I squirm and/or moan they just give me some more!

Patty ( post transplant AIH)

Miami Florida

[Guest guest]

Hi Elena,

After hearing your diagnosis I just had to send you a note. I too have mild

inflamation and very mild elevation in LFTs, actually all normal except GGTP.

My doctors at Mayo clinic have put me on await and see also. Consider

yourself lucky. My doc says they're probably many of us that live a fairly

normal life and are never diagnosed because our symptoms remain very mild.

While the meds do help the majority of folks, they open a whole set of other

conditions. I was diagnose a year ago and go back next year for another

biopsy check. So far so good. Their are many folks on this list that wish

they had your diagnosis. All therbest,

Rick

[Guest guest]

Hello all,

I'm another one very similar to the two of you, except that my liver is very

inflamed. In regards to symptoms, I find that most of the time I feel ok,

as long as I'm not stressed or nervous. I had two " off " days this weekend,

where I felt very tired, kind of nauseous, irritated, and unable to sleep.

I just have a question about biopsies. I had one on April 28, and my side

still feels bruised (but doesn't look bruised). It is also tender if I

stretch it, or try to sleep on it. Is this normal? Just making sure...

>From: ELENA PHEASANT <brit71@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Digest Number 33

>Date: Mon, 17 May 1999 07:22:12 -0700 (PDT)

>

>From: ELENA PHEASANT <brit71@...>

>

>Hi Rick,

>Thanks for your response. Your case sounds alot similar to mine. Except

>my GGTP is normal, which confuses my doctor. Do you have any symptoms.

>I do, infact its alot worse today (alot of upper right ab pain, aches

>etc) I wish there was something the doctors could do for the mild

>cases. I was thinking of flying to the Mayo clinic, but if hes just

>going to tell me we will wait and see It will be a waste of time and

>money.

>How are you now? Do you have any symptoms?

>Best wishes

>Elena

>

>--- AutoEngr2@... wrote:

> > From: AutoEngr2@...

> >

> > Hi Elena,

> >

> > After hearing your diagnosis I just had to send you

> > a note. I too have mild

> > inflamation and very mild elevation in LFTs,

> > actually all normal except GGTP.

> > My doctors at Mayo clinic have put me on await and

> > see also. Consider

> > yourself lucky. My doc says they're probably many of

> > us that live a fairly

> > normal life and are never diagnosed because our

> > symptoms remain very mild.

> > While the meds do help the majority of folks, they

> > open a whole set of other

> > conditions. I was diagnose a year ago and go back

> > next year for another

> > biopsy check. So far so good. Their are many folks

> > on this list that wish

> > they had your diagnosis. All therbest,

> >

> > Rick

> >

> >

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

> > Congratulations to " Trail Rider, " our latest ONElist

> > of the Week.

> > http://www.ONElist.com

> > Visit our homepage and share with us how ONElist is

> > changing YOUR life!

> >

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

> > Please support the American Liver Foundation!

> >

> > 1.) To subscribe send e-mail to

> > -subscribeonelist

> > 2.) To UNsubscribe send to

> > -unsubscribeonelist

> > 3.) Digest e-mail format send to

> > -digestonelist

> > 4.) Normal e-mail format send to

> > -normalonelist

> >

>

>===

>Elena Pheasant

>

>_____________________________________________________________

>

[Guest guest]

Hi Rick,

Thanks for your response. Your case sounds alot similar to mine. Except

my GGTP is normal, which confuses my doctor. Do you have any symptoms.

I do, infact its alot worse today (alot of upper right ab pain, aches

etc) I wish there was something the doctors could do for the mild

cases. I was thinking of flying to the Mayo clinic, but if hes just

going to tell me we will wait and see It will be a waste of time and

money.

How are you now? Do you have any symptoms?

Best wishes

Elena

--- AutoEngr2@... wrote:

> From: AutoEngr2@...

>

> Hi Elena,

>

> After hearing your diagnosis I just had to send you

> a note. I too have mild

> inflamation and very mild elevation in LFTs,

> actually all normal except GGTP.

> My doctors at Mayo clinic have put me on await and

> see also. Consider

> yourself lucky. My doc says they're probably many of

> us that live a fairly

> normal life and are never diagnosed because our

> symptoms remain very mild.

> While the meds do help the majority of folks, they

> open a whole set of other

> conditions. I was diagnose a year ago and go back

> next year for another

> biopsy check. So far so good. Their are many folks

> on this list that wish

> they had your diagnosis. All therbest,

>

> Rick

>

>

------------------------------------------------------------------------

> Congratulations to " Trail Rider, " our latest ONElist

> of the Week.

> http://www.ONElist.com

> Visit our homepage and share with us how ONElist is

> changing YOUR life!

>

------------------------------------------------------------------------

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to

> -subscribeonelist

> 2.) To UNsubscribe send to

> -unsubscribeonelist

> 3.) Digest e-mail format send to

> -digestonelist

> 4.) Normal e-mail format send to

> -normalonelist

>

===

Elena Pheasant

_____________________________________________________________

[Guest guest]

In answer to your question where I am from - Glo - from New York here

>From: onelist

>Reply-onelist

>onelist

>Subject: Digest Number 33

>Date: 28 Dec 1999 18:04:43 -0000

>

>

>>

[Guest guest]

Dear Patti:

I would also be interested in a " ribbon " or something else that

would symbolize, and educate the plight of the known HCV people and the

larger numbers who do not know they are infected. I would think that we

could find a way to design and sell the pin, or other symbol, and donate

the proceeds to HCV research.

Any ideas, anyone? Marty

[Guest guest]

Dear Patti:

I would also be interested in a " ribbon " or something else that

would symbolize, and educate the plight of the known HCV people and the

larger numbers who do not know they are infected. I would think that we

could find a way to design and sell the pin, or other symbol, and donate

the proceeds to HCV research.

Any ideas, anyone? Marty

[Guest guest]

Marty- yea I know its a long battle ahead for us veterans, who also

happen to have the highest rate of HCV than any other group. Also

interesting to note in the US HCV outnumbers HIV 4-1.

You did answer one question I did have-which was how could someone get

the virus by sharing straws- a big duh for myself. Cokewas ne thing I

never really did so I was unaware, or at least not thinking of the nose

bleeds , even wen knowng enough coke heads that always had nosebleeds.

I was an IV drug user in Germany where I always used my own needles-but

someone not long ago asked me if I ever shared a spoon. I would think

that cooking the herion would kll the virus but have soon learned that I

may have to cook it for 20 minutes to effectively kill the virus.

Luckily everyone knows I have the virus and no one treats me any

different. I don't wear a ribbon but am always ready to talkabout it.

Unfortunatly I know t many people wih the virus who will not stop

drinking o drugging because they are having no symptoms.

Good news to you newbies with the virus is only maybe 20-25% will ever

experience some of the thing we talk about in this forum.

- from Battle Creek, Michigan

p.s. Tomorrow I have an EGD (#30) to repair sme more varicies.

" ...I dream then ask why not "

[Guest guest]

, Much luck with your EGD. My husband just completed all tests for

transplant evaluation. This was hairy to say the least. Try a

trans-jugular biopsy. He was really scared but came through just fine. Had

to be done this way because low platelets. The dragon is indeed bad and

each day is new. MJ

Re: Digest Number 33

From: MagistarLudi@...

Marty- yea I know its a long battle ahead for us veterans, who also

happen to have the highest rate of HCV than any other group. Also

interesting to note in the US HCV outnumbers HIV 4-1.

You did answer one question I did have-which was how could someone get

the virus by sharing straws- a big duh for myself. Cokewas ne thing I

never really did so I was unaware, or at least not thinking of the nose

bleeds , even wen knowng enough coke heads that always had nosebleeds.

I was an IV drug user in Germany where I always used my own needles-but

someone not long ago asked me if I ever shared a spoon. I would think

that cooking the herion would kll the virus but have soon learned that I

may have to cook it for 20 minutes to effectively kill the virus.

Luckily everyone knows I have the virus and no one treats me any

different. I don't wear a ribbon but am always ready to talkabout it.

Unfortunatly I know t many people wih the virus who will not stop

drinking o drugging because they are having no symptoms.

Good news to you newbies with the virus is only maybe 20-25% will ever

experience some of the thing we talk about in this forum.

- from Battle Creek, Michigan

p.s. Tomorrow I have an EGD (#30) to repair sme more varicies.

" ...I dream then ask why not "

---------------------------

[Guest guest]

, Much luck with your EGD. My husband just completed all tests for

transplant evaluation. This was hairy to say the least. Try a

trans-jugular biopsy. He was really scared but came through just fine. Had

to be done this way because low platelets. The dragon is indeed bad and

each day is new. MJ

Re: Digest Number 33

From: MagistarLudi@...

Marty- yea I know its a long battle ahead for us veterans, who also

happen to have the highest rate of HCV than any other group. Also

interesting to note in the US HCV outnumbers HIV 4-1.

You did answer one question I did have-which was how could someone get

the virus by sharing straws- a big duh for myself. Cokewas ne thing I

never really did so I was unaware, or at least not thinking of the nose

bleeds , even wen knowng enough coke heads that always had nosebleeds.

I was an IV drug user in Germany where I always used my own needles-but

someone not long ago asked me if I ever shared a spoon. I would think

that cooking the herion would kll the virus but have soon learned that I

may have to cook it for 20 minutes to effectively kill the virus.

Luckily everyone knows I have the virus and no one treats me any

different. I don't wear a ribbon but am always ready to talkabout it.

Unfortunatly I know t many people wih the virus who will not stop

drinking o drugging because they are having no symptoms.

Good news to you newbies with the virus is only maybe 20-25% will ever

experience some of the thing we talk about in this forum.

- from Battle Creek, Michigan

p.s. Tomorrow I have an EGD (#30) to repair sme more varicies.

" ...I dream then ask why not "

---------------------------

[Guest guest]

<<I'm sort of going on and on, but what I am trying to say is this. A

>person can have a great career, but that doesn't necessarily mean

>that their life is by any means complete. There are so many

>different facets of our lives that need attention, and we all may

>focus on different facets first.

>

>You have a husband and a family...those are two things I would LOVE

>to have. You are a fabulous person who brightens every one of my

>days. You work in a grocery store and have lost weight in the

>process!!! LOL...that's a HUGE accomplishment as far as I am

>concerned! You have done 5 DAYS straight of Advanced tapes! Be

>proud of yourself and who you are. The career will come in time.>>

I am still catching up on emails, and I could not let Susi's reply to

go without comment . Susi, thank you for sharing your story. I personally

have had a tendancy to throw myself too much into my career while neglecting

myself. My personal life was in shambles and I was in an unhappy

relationship with a man I knew I would never marry. That was a year ago.

Since then I broke off the relationship, bought my first home closer to work

(and farther from my ex), and tried to figure out who I am. It was my

" mid-life crisis " for my twenties. Today I still work too hard but I am

starting to explore interests I had only thought of before. I am just

gearing up for a REALLY busy period at work, so your story comes at a good

time. It reminds me not to put in so many hours at the expense of myself.

Thanks for reminding us all how important it is to pay attention to

ourselves/there's more to life than just a career.

--G

who marvels at how many truly amazing people are on this list

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

unsubscribe.

Thanks,

Joann

__________________________________________________

[Guest guest]

~dz~ welcome back and let me say, you were missed, by me at least! I am glad that you are back. My folks are visiting here from Oregon and their visit has been a blessing. In all of 25 years they hadn't come to visit me in any state that I lived in, so I always went to them. This year, here they are, parked outside the house in their motorhome and I feel so blessed that I finally have them so close to me. In fact yesterday we had all of Terri's family here to meet my folks, to include 8 children under 12. Yikes. PTL for the swimming pool. My mother asked me to explain what this HCV was all about so it was interesting, as she insists on a 5 o'clock happy hour every day, to explain to her that alcohol is a poison to me. She calls it happy hour . . . I call it poison hour, for me.

Always,

SJ

[Guest guest]

DZ... GOOD TO HEAR FROM YA!!! Yes it does remind me of a song. Not many of us have been on. Summer time vacations I guess. Glad to hear you had a great time. Good luck with the eye dye process.

Nausea in the morning

Nausea at night

Tired of forcing food down

Gettin tired of this fight!

For tomorrow is yet another day!!!

Another day to slay!!!

[Guest guest]

Hi all. Thanks for putting me on Digest, . I'm

back so if you could set me back on that'd be great. I

weighed myself this morning, and I've lost 20 lbs.

That doesn't hurt my feelings one bit. I'm halfway

done, if I lose another 20, I'll be at the worrying

stage. Janet, isn't that nausea thing like the song..

Nausea in the morning,

Nausea in the evening,

Nausea at suppertime.....

I go for my 2nd PCR this week after 6 mos of tx. I'm

going back to work this morning, and on 7/31 I go in

to get my eyes checked with the dye procedure. No rest

for the wicked, as they say.

As always, my commune with nature has helped my

attitude out. God is with me, and will continue to be

at my side as long as I keep the path open. I intend

to do just that. I am adding a healthy dose of prayer

and meditation to my medical regimin and quite

honestly, if I could only have one or the other, I

would take God. But since I have options, I will

choose what medical help may be available and THAT

will be my supplement, my faith is my main tx. Have a

great day and week everybody, I've missed you all.

-dz-

__________________________________________________

[Guest guest]

Hi Everyone

Someone asked about Kineret. I have PA and have been taking it for 11

weeks, along with 15mg. MTX weekly. Unfortunately I have had no

improvement with it. I have synovitis of my hands and wrist and it

hasn't improved at all. Prednisone is the only drug that helps the

swelling a little. I have one more week's supply left and if no change I

look for the doc to stop it. She says most have improvement in about 4

weeks. Don't know what the next plan of action will be. I am getting

very frustrated as I have tried all of the drugs available including

Enbrel and remicade. Took those before the hands swelled up so may give

remicade another try. Have to have a gastroscopy in 2 weeks because the

prednisone has done a job on my stomach and need to rule out an

ulcer.Have indigestion and heartburn constantly. I wouldn't mind these

side effects if I could get some relief from the srthritis pain.

Don't feel that I have had any side effects from the Kineret. It's the

pred and MTX that have caused problems. Kineret is somewhat painful when

injecting, but I let it warm up at room temp for about an hour and that

helps. I don't like the simpleject that comes with it but it would be

good for someone who is shy of needles. Some people ice the area to be

injected and say that helps. It is also less painful to inject in the

belly, which is what I do. Every spot on my legs that I injected

developed a patch of psoriasis. When taking Kineret you must have

regular bloodwork done to monitor your white blood cell count because it

can lower it. Mine is elevated at 14.9! I guess I just do the opposite

of what is expected.

[Guest guest]

From: -= ß =- <baudecb1@...>

Subject: Re: Re: Tonka Bean / Coumarin

snip

I hardly think that those that have a " life threatening " condition

would take " Internet " gossip as Gospel.

snip

Oboy, I wouldn't want to bet on THAT! You'd be amazed at some of the

posts I've seen- people who harshly dismiss doctors and traditional

medicine- one woman was just dripping venom as she described the doctor who

took a while to figure out that she had Lyme disease and Babesiosis. Now

those 2 conditions could indeed be life-threatening- but she was so deep

into her anger that she came on-line to vent her spleen and indeed, to get

'Internet' gossip as 'gospel'. She was asking for it, and ready to swallow

it.

It takes all kinds..

-- L Wakefield, owner and operator of the beastly truck heretik, that

refuses to stay between the lines when parking --

[Guest guest]

Well with a fusion (I've already had one and many more to come) they

add hardware.

With a laminectomy the cut out section of the vertebrae. Don't they?

>

[Guest guest]

I know a lot of people on other lists that have had fusions done. I

know what hard ware is and I know all about what fusion is. It reduces

the mobility of the spine and stabilizes it but puts more strain on the

other levels that compensate. Well yes with a laminectomy they remove

vertebrae but with many types of stenosis they have to mainly because of

bone and osteophytes and/or discs (well duh!). In lumbar spine surgery

depending on what needs to be done anything that has to do with discs

either a laminotomy or laminectomy is performed. In my case I had such

a huge centrally herniated disc that they HAD to do an open discectomy

(and not a micro) in order to get all of the contents out of my canal

and remove the bone overgrowth that occurred because of my DDD.

Laminectomy is the norm with dealing with stenosis as it clears the way

for the nerves. I don't need a fusion yet and I am so glad I never had

one. I have other lumbar herniated discs what would be worse I'm sure.

I doubt I'd ever fuse with the way I heal. If I had a fusion it would

not be because of stenosis it would be because of the DDD. I am just

curious how they manage to remove your bone spurs without either a

laminectomy or a foramenotomy because I know fusions do not remove them.

I was just trying to be helpful and nice. With the way you are going

on then why should I bother?

safegirl@... wrote:

> Well with a fusion (I've already had one and many more to come) they

> add hardware.

>

> With a laminectomy the cut out section of the vertebrae. Don't they?

>

> >

[Guest guest]

Re: Message: 12

Colourbleu--

Yes, I'm doing the Wheldon regime: doxycycline &

zithromax continuously and Flagyl in pulsed doses.

Wheldon suggests Flagyl for 5 days every three weeks.

I found that I improved so much on the Flagyl,

although I could only tolerate it for 2-3 days, and

would not feel as clear in between just on the

doxy/zithro, that currently I'm doing the flagyl for 3

days every week. I probably will stretch this out as i

go to fit the protocal better, especially as my read

of Stratton is, as Wheldon notes very clearly, that

the abx drive the Cpn into it's " stringent " form,

which the Flagyl then kills.

I have improved significantly on this protocal to

date, and am very interested in adding whatever

factors will get the Cpn at another of it's life

phase's, hence my curiosity about niacin. More reading

to do first!

Jim

Date: Tue, 22 Mar 2005 14:33:58 +0100

From: Colourbleu <colourbleu@...>

Subject: Re: Digest Number 31

yes I will also try the charcoal in high doses too. I

seem to have run

out of the stuff, but I have never done it in the

large doses he

recommends.

Are you currently on abx?

> Many thanks for all of you who sent me the links for

> the Stratton protocal. I'm doing a lot of thinking

> about some of the added data here which was

simplified

> on Wheldon's regime, especially the concern about

> secondary porphyria and the treatment options for

> this, as well as the interesting fact that

niacinamide

> (a form of niacin) is anti-chlamydial to a certain

> stage of it's life form, and something I could

easily

> add to the doxy/azithro/flagyl regime to increase

it's

> power, or that's my first read. I had already tried

> the charcoal to limit neurotoxin reabsorbtion, but

was

> not doing it in near as large amounts as he

recommends

> as well.

> Thanks,

> Jim

>

>

[Guest guest]

I am also told by Wheldon that ALA and Acetyl L-Carnitine are also of

great value.

Jim please keep me informed as to how you go. How long have you been on

this protocol? Do you have any problems with fungi, allergies as a

result of the Flaygl?

bleu

> Re: Message: 12 

> Colourbleu--

> Yes, I'm doing the Wheldon regime: doxycycline &

> zithromax continuously and Flagyl in pulsed doses.

> Wheldon suggests Flagyl for 5 days every three weeks.

> I found that I improved so much on the Flagyl,

> although I could only tolerate it for 2-3 days, and

> would not feel as clear in between just on the

> doxy/zithro, that currently I'm doing the flagyl for 3

> days every week. I probably will stretch this out as i

> go to fit the protocal better, especially as my read

> of Stratton is, as Wheldon notes very clearly, that

> the abx drive the Cpn into it's " stringent " form,

> which the Flagyl then kills.

>

> I have improved significantly on this protocal to

> date, and am very interested in adding whatever

> factors will get the Cpn at another of it's life

> phase's, hence my curiosity about niacin. More reading

> to do first!

>

> Jim

>      

>    Date: Tue, 22 Mar 2005 14:33:58 +0100

>    From: Colourbleu <colourbleu@...>

> Subject: Re: Digest Number 31

>

> yes I will also try the charcoal in high doses too. I

> seem to have run

> out of the stuff, but I have never done it in the

> large doses he

> recommends.

>

> Are you currently on abx?

>

>

>

> > Many thanks for all of you who sent me the links for

> >  the Stratton protocal. I'm doing a lot of thinking

> >  about some of the added data here which was

> simplified

> >  on Wheldon's regime, especially the concern about

> >  secondary porphyria and the treatment options for

> >  this, as well as the interesting fact that

> niacinamide

> >  (a form of niacin) is anti-chlamydial to a certain

> >  stage of it's life form, and something I could

> easily

> >  add to the doxy/azithro/flagyl regime to increase

> it's

> >  power, or that's my first read. I had already tried

> >  the charcoal to limit neurotoxin reabsorbtion, but

> was

> >  not doing it in near as large amounts as he

> recommends

> >  as well.

> >  Thanks,

> >  Jim

> >

> >

>

>

>

>