post treatment blues

[Guest guest]

Meghan,

Hugs girl. I wish you felt better. I have a few thots, but you know, this is

just an idea, it helps me so thot I'd offer it. You still drinking that water

to flush out the chemicals? A little excercise will help with that too, and try

some regular massage, force the toxins out of your muscles.

I would check back with your doc too. Don't let thinking it's one thing mask

some other possibility.

And for some people, it takes 6 mo or more to feel better. I've heard heppers

say they felt better the next day after treatment, to months later. It's a slow

and frustrating process I know. I want to feel good NOW

There is always the (dreadful) fact that just because you did treatment doesn't

mean you're gonna feel better and a rare possibility that it will make you feel

(or be) worse. It's not like an aspirin you take and expect pain relief. The

treatment is very strong Rx and alters our bodies in ways we just don't know. I

think it's important to talk about the " bad " parts of treatment, but don't let

it scare you. Go see your specialist, maybe he/she can help.

Let us know how you feel ok?

Alley

" If you want to be a hero knight, never look directly into the mirror, lest you

see that tin pot on your head instead of a glorious plumed helmet! "

[Guest guest]

Meghan,

Hugs girl. I wish you felt better. I have a few thots, but you know, this is

just an idea, it helps me so thot I'd offer it. You still drinking that water

to flush out the chemicals? A little excercise will help with that too, and try

some regular massage, force the toxins out of your muscles.

I would check back with your doc too. Don't let thinking it's one thing mask

some other possibility.

And for some people, it takes 6 mo or more to feel better. I've heard heppers

say they felt better the next day after treatment, to months later. It's a slow

and frustrating process I know. I want to feel good NOW

There is always the (dreadful) fact that just because you did treatment doesn't

mean you're gonna feel better and a rare possibility that it will make you feel

(or be) worse. It's not like an aspirin you take and expect pain relief. The

treatment is very strong Rx and alters our bodies in ways we just don't know. I

think it's important to talk about the " bad " parts of treatment, but don't let

it scare you. Go see your specialist, maybe he/she can help.

Let us know how you feel ok?

Alley

" If you want to be a hero knight, never look directly into the mirror, lest you

see that tin pot on your head instead of a glorious plumed helmet! "

[Guest guest]

Dear Gee,

Thanks for the encouragement. Life sometimes seems so pointless when

you can't enjoy it. I guess I just have to be patient and live with whatever

I am left with from the treatment. I wonder if I have rebound headaches from

too much medication. Do you think that is possible, or do you think it is

the interferon still causing the pain? The cure might be worse than the

disease. Your joint pain is probably worse for you than the symptoms of hep

c. Keep your fingers crossed and say a prayer that my tests show no virus

on the 13th of Jan. I know I couldn't do it again. My body couldn't take it

and my veins were shutting down. Thanks again, Meghan

[Guest guest]

I too had post treatment blues.... just didn't feel right for the longest time.

Can't tell you how long it lasted but it seemed forever. I just kept plugging

along though...not like there is an alternative. I've now been off tx for way

over a year and don't know if I'm the same as pre-treatment.

I've been fighting a lot of brain fog (yes, I diligently take my MSM) and

wondering if this is part of what they have been finding in the studies of the

effects of the hep c virus on the brain or if I'm slipping into depression.

Either way, with no insurance in this country they call " great " and a " world

leader " I have no way of finding out what is going on with me. It's very

frustrating for me....I learned to accept the brain fog during tx because it was

a side....but I am a long time post tx and where is this brain fog coming from.

But hang in there...the effects of tx will wear off and hopefully you will be

better off than before tx.

Tatezi

Re: post treatment blues

Dear Gee,

Thanks for the encouragement. Life sometimes seems so pointless when

you can't enjoy it. I guess I just have to be patient and live with whatever

I am left with from the treatment. I wonder if I have rebound headaches from

too much medication. Do you think that is possible, or do you think it is

the interferon still causing the pain? The cure might be worse than the

disease. Your joint pain is probably worse for you than the symptoms of hep

c. Keep your fingers crossed and say a prayer that my tests show no virus

on the 13th of Jan. I know I couldn't do it again. My body couldn't take it

and my veins were shutting down. Thanks again, Meghan

[Guest guest]

PCR is what we use sometimes for the viral load test. It stands for polymarease

chain reaction (hope I spelled it correctly, sorry if I didn't, I just woke up

So when someone says " viral load " or " pcr " they mean the same thing.

Cryo is something I can't even spell the whole word to look it up lol. You can

probably find it on www.hepatitis-central.com or www.hepatitisneighborhood.com

etc.

Alley

" If you want to be a hero knight, never look directly into the mirror, lest you

see that tin pot on your head instead of a glorious plumed helmet! "

[Guest guest]

From: Sita@...

Reply-Hepatitis C

Date: Thu, 26 Dec 2002 21:32:53 EST

Hepatitis C

Subject: Re: post treatment blues

Dear Gee,

Thanks for the encouragement. Life sometimes seems so pointless when

you can't enjoy it. I guess I just have to be patient and live with

whatever

I am left with from the treatment.

It can sometimes take a long time to recover from treatment! It took me a

very, very long time to recover. But-you will improve. Hope you stay

undetectable.

gail

[Guest guest]

In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@...

writes:

> www.hepatitisneighborhood.com

I searched for cryo and couldn't find anything. I guess you need the whole

word to locate the meaning. Just tell me in your own words what it is.

Thank you, Meghan

[Guest guest]

In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@...

writes:

> www.hepatitisneighborhood.com

I searched for cryo and couldn't find anything. I guess you need the whole

word to locate the meaning. Just tell me in your own words what it is.

Thank you, Meghan

[Guest guest]

Dear Meghan, my fingers will DEFINITELY be crossed on the 13th for you!!! I

remember getting the headaches too...think they were from the Riba..who

knows..but they did stop. Yes, I think the jpoint pain an be a result of

treatment or leftover damage from the hep or the cryo..seems to be some kind

of syndrome. The internist & the Rheumy both believe it is some kind of

chronic inflammatory disease process related to the Cryo. Docs don't yet

know much about Cryo and it's after-effects. But wjatever it is, it seems

like it is here to stay so I've gotten used to it and it doesn't usually

throw me over the edge unless the pain gets put of control (which I really

try NOT to let happen! :) HOpefully, I will hear in hear next week that

my PCR is still 'undectable'. I will be praying that yours is that too. God

bless, gee

[Guest guest]

Dear Meghan, my fingers will DEFINITELY be crossed on the 13th for you!!! I

remember getting the headaches too...think they were from the Riba..who

knows..but they did stop. Yes, I think the jpoint pain an be a result of

treatment or leftover damage from the hep or the cryo..seems to be some kind

of syndrome. The internist & the Rheumy both believe it is some kind of

chronic inflammatory disease process related to the Cryo. Docs don't yet

know much about Cryo and it's after-effects. But wjatever it is, it seems

like it is here to stay so I've gotten used to it and it doesn't usually

throw me over the edge unless the pain gets put of control (which I really

try NOT to let happen! :) HOpefully, I will hear in hear next week that

my PCR is still 'undectable'. I will be praying that yours is that too. God

bless, gee

[Guest guest]

Meghan, Cryo is Cryoglobulinemia nad PCR is a viral load. Didn't see this

post when I answered the other one..haha..gee

[Guest guest]

Meghan, Cryo is Cryoglobulinemia nad PCR is a viral load. Didn't see this

post when I answered the other one..haha..gee

[Guest guest]

Dear Tat...my memory is worse now than when I was on treatment or

pre-treatment....go figure. My mom says my memory is worse than hers and

she's 80!!!!! She is sooooo right. I wondered too if it was due to the Hep

in the brain , treatment, or a combo of everything. But I'm definitely much

foggier than I used to be! Oh well...what was I saying???????????LOL! gee

[Guest guest]

Dear Tat...my memory is worse now than when I was on treatment or

pre-treatment....go figure. My mom says my memory is worse than hers and

she's 80!!!!! She is sooooo right. I wondered too if it was due to the Hep

in the brain , treatment, or a combo of everything. But I'm definitely much

foggier than I used to be! Oh well...what was I saying???????????LOL! gee

[Guest guest]

Dear Gail, thanks! Appreciate the info. Bextra is an NSAID. I used to take

up to 3000mgs of Ibuprofen daily and my doc would cringe, crossing his

fingers that my kidneys wouldn't blow or my stomach. They didn't...but when

I started to see the Rheumatologist, she first tried me on Plaquenil, but I

got a body rash from it so I had to stop. We moved on to Bextra ( a new

med). It doesn't take the pain away, but gives me as much relief as all the

Ibuprofen did (which is miraculous!) Instead of taking 10 Ibus a day, I take

1 Bextra in the a.m and it lasts all day. Unfortunately, she will not let

me increase it. So I can only take 20 mgs a day. But like I said, I still

take Demerol during the day (usually in the a.m.) and Oxycontin before bed.

I can pretty much deal with the residual pain. I had taken Neurontin for

quite a while before treatment for the nerve pain, but I never did get over

the sides (nausea & dizziness). I really would like to switch to one of the

new patches that are out. I read about one recently that is being touted as

a better way to deal with pain than using opoids. It (if I remember

right..)is like oxycontin..but works better(no breakthru pain) and has been

found not to be addicting. At this point I NEVER worry about that....but the

docs do. Phyisical dependence is one thing and ADDICTION is a whole nother

story! But that's just my opinion! Anyway, I don't know HOW I got into all

of this...sheesh! Sorry..love, gee (P.S. I'm a Gail too!)

[Guest guest]

Dear Gail, thanks! Appreciate the info. Bextra is an NSAID. I used to take

up to 3000mgs of Ibuprofen daily and my doc would cringe, crossing his

fingers that my kidneys wouldn't blow or my stomach. They didn't...but when

I started to see the Rheumatologist, she first tried me on Plaquenil, but I

got a body rash from it so I had to stop. We moved on to Bextra ( a new

med). It doesn't take the pain away, but gives me as much relief as all the

Ibuprofen did (which is miraculous!) Instead of taking 10 Ibus a day, I take

1 Bextra in the a.m and it lasts all day. Unfortunately, she will not let

me increase it. So I can only take 20 mgs a day. But like I said, I still

take Demerol during the day (usually in the a.m.) and Oxycontin before bed.

I can pretty much deal with the residual pain. I had taken Neurontin for

quite a while before treatment for the nerve pain, but I never did get over

the sides (nausea & dizziness). I really would like to switch to one of the

new patches that are out. I read about one recently that is being touted as

a better way to deal with pain than using opoids. It (if I remember

right..)is like oxycontin..but works better(no breakthru pain) and has been

found not to be addicting. At this point I NEVER worry about that....but the

docs do. Phyisical dependence is one thing and ADDICTION is a whole nother

story! But that's just my opinion! Anyway, I don't know HOW I got into all

of this...sheesh! Sorry..love, gee (P.S. I'm a Gail too!)

[Guest guest]

Here is your full word....cryoglobulinemia (EMC)...and here is a description of

it. I'll put some links to some sites below also.

Essential mixed cryoglobulinemia

Essential mixed cryoglobulinemia is a rare autoimmune disorder that may involve

the blood and various other tissues and organs. The major symptoms include

unusual response to cold, skin abnormalities, blood disorders and generalized

weakness. There may also be joint pain, inflamed blood vessels, and kidney

problems.

The exact cause of essential mixed cryoglobulinemia is not known. However, it is

considered to be an autoimmune disorder. (Autoimmune disorders are caused when

the body's immune system, which is meant to defend the body against bacteria,

viruses, and any other foreign product, malfunctions and produces antibodies

against healthy tissue, cells and organs.) In this condition, the immune system

appears to be triggered by cold temperatures. Cryoglobulins are proteins in the

blood that become apparent when the blood is cooled. These cryoglobulins can

affect many different bodily systems, causing pain and dysfunction. It is

important to note that a link between cryoglobulinemia and hepatitis B & C

infection is possible.

I'm sure that now that you know the full word, you'll be able to find a ton of

info on the net. Good luck.

Tatezi

http://dynamics.org/~altenber/cryo/HCV_cryo_refs.html

http://dynamics.org/~altenber/cryo/

http://www.mayo.edu/mmgrg/rst/cryo.htm

http://www.cx.unibe.ch/ikp/lab2/hcvcryo.html

http://vasculitis.med.jhu.edu/typesof/cryoglobulinemia.html

http://www.hepnet.com/hepc/cryoglob.html

http://www.nursing.uiowa.edu/sites/AdultPain/GenePain/CryHeptt.htm

Re: post treatment blues

In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@...

writes:

> www.hepatitisneighborhood.com

I searched for cryo and couldn't find anything. I guess you need the whole

word to locate the meaning. Just tell me in your own words what it is.

Thank you, Meghan

[Guest guest]

Here is your full word....cryoglobulinemia (EMC)...and here is a description of

it. I'll put some links to some sites below also.

Essential mixed cryoglobulinemia

Essential mixed cryoglobulinemia is a rare autoimmune disorder that may involve

the blood and various other tissues and organs. The major symptoms include

unusual response to cold, skin abnormalities, blood disorders and generalized

weakness. There may also be joint pain, inflamed blood vessels, and kidney

problems.

The exact cause of essential mixed cryoglobulinemia is not known. However, it is

considered to be an autoimmune disorder. (Autoimmune disorders are caused when

the body's immune system, which is meant to defend the body against bacteria,

viruses, and any other foreign product, malfunctions and produces antibodies

against healthy tissue, cells and organs.) In this condition, the immune system

appears to be triggered by cold temperatures. Cryoglobulins are proteins in the

blood that become apparent when the blood is cooled. These cryoglobulins can

affect many different bodily systems, causing pain and dysfunction. It is

important to note that a link between cryoglobulinemia and hepatitis B & C

infection is possible.

I'm sure that now that you know the full word, you'll be able to find a ton of

info on the net. Good luck.

Tatezi

http://dynamics.org/~altenber/cryo/HCV_cryo_refs.html

http://dynamics.org/~altenber/cryo/

http://www.mayo.edu/mmgrg/rst/cryo.htm

http://www.cx.unibe.ch/ikp/lab2/hcvcryo.html

http://vasculitis.med.jhu.edu/typesof/cryoglobulinemia.html

http://www.hepnet.com/hepc/cryoglob.html

http://www.nursing.uiowa.edu/sites/AdultPain/GenePain/CryHeptt.htm

Re: post treatment blues

In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@...

writes:

> www.hepatitisneighborhood.com

I searched for cryo and couldn't find anything. I guess you need the whole

word to locate the meaning. Just tell me in your own words what it is.

Thank you, Meghan

[Guest guest]

Dear Gee,

I will pray that you have good results from your tests. Please post when

you get them. I feel so badly for you having to live with all that joint

pain. Aren't you angry that the treatment that was meant to cure you , left

you with so much pain? I had no idea that it would be so painful and take so

long to recover. I don't know if I would have kept going had I known. I

feel a little betrayed. I don't like living on pain medication. Meghan

[Guest guest]

HI.Gosh Tat you give status to this group,it was you who put me on MSM and I.am

sure,although I cannot proof it,that it got rid of most of my brainfog,apart

from my erratic behaviour.What supplement do you have to take to combat this?.Or

do I hve to see a shrink?.Liefs,Willem.

Re: post treatment blues

In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@...

writes:

> www.hepatitisneighborhood.com

I searched for cryo and couldn't find anything. I guess you need the whole

word to locate the meaning. Just tell me in your own words what it is.

Thank you, Meghan

[Guest guest]

HI.Gosh Tat you give status to this group,it was you who put me on MSM and I.am

sure,although I cannot proof it,that it got rid of most of my brainfog,apart

from my erratic behaviour.What supplement do you have to take to combat this?.Or

do I hve to see a shrink?.Liefs,Willem.

Re: post treatment blues

In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!, alleypat@...

writes:

> www.hepatitisneighborhood.com

I searched for cryo and couldn't find anything. I guess you need the whole

word to locate the meaning. Just tell me in your own words what it is.

Thank you, Meghan

[Guest guest]

I'm not a good person to talk to right now, dear Willem. Someone flushed my

life's toilet and I'm going down the drain fast. Re: post treatment blues

In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!,

alleypat@...

writes:

> www.hepatitisneighborhood.com

I searched for cryo and couldn't find anything. I guess you need the

whole

word to locate the meaning. Just tell me in your own words what it is.

Thank you, Meghan

[Guest guest]

I'm not a good person to talk to right now, dear Willem. Someone flushed my

life's toilet and I'm going down the drain fast. Re: post treatment blues

In a message dated 12/29/02 12:19:58 AM !!!First Boot!!!,

alleypat@...

writes:

> www.hepatitisneighborhood.com

I searched for cryo and couldn't find anything. I guess you need the

whole

word to locate the meaning. Just tell me in your own words what it is.

Thank you, Meghan

[Guest guest]

It's really frustrating isn't it....it's making me crazy (or should that be

crazier)!

Re: post treatment blues

Dear Tat...my memory is worse now than when I was on treatment or

pre-treatment....go figure. My mom says my memory is worse than hers and

she's 80!!!!! She is sooooo right. I wondered too if it was due to the Hep

in the brain , treatment, or a combo of everything. But I'm definitely much

foggier than I used to be! Oh well...what was I saying???????????LOL! gee

[Guest guest]

It's really frustrating isn't it....it's making me crazy (or should that be

crazier)!

Re: post treatment blues

Dear Tat...my memory is worse now than when I was on treatment or

pre-treatment....go figure. My mom says my memory is worse than hers and

she's 80!!!!! She is sooooo right. I wondered too if it was due to the Hep

in the brain , treatment, or a combo of everything. But I'm definitely much

foggier than I used to be! Oh well...what was I saying???????????LOL! gee