need advice please

[Guest guest]

Hi people,

((( The previous letter on the sinus/migraine happened all this time I've also

been asking my gastro nurse for help so it all kinda ties in. I thot once I got

over the migraine and infection ti would help me feel better but nope. The

cortisone did, I know, but it'll wear off soon.)

As most of you know, I'm thru with my 48 weeks of treatment. I've been off the

combo about 3 weeks now almost 4.

The sides off the combo are 10 times worse than while I was on it.

I have called my gastro nurse 5 times in the last 3 weeks asking for help with

the sides and I get the brush off.

I have an appt with doctor the 10th and I'm ready to really tell him how the cow

ate the gastro lol.

Do they think that now I'm thru treatment I'm faking it?

If you'll remember, from the very first shot of interferon, I felt better. It

got rid of my joint pain and muscle aches. I was happy for that. Of course, over

time the interferon and riba build up in your system. The last 2 weeks of

treatment, i was getting open sores that wouldn't heal, itchy just icky symptoms

and the nurse said take a benadryl. Well, I take Allegra and Entex daily and a

nose spray and it didn't dawn on me not to mix the allegra and benadryl. Well I

think that is what made me sleep for 2 days. Benadryl knocks me out well over 12

hours anyway.

The " withdrawal " symptoms for me are a lot like what others are getting on

combo:

- restless twitchy legs when trying to sleep, have to get up and walk around on

them and work them out, but then come back soon as I try to relax

- muscle cramps esp in legs, toes, feet

- extreme mood swings (and i " m on the max antidepressant he said) yelling crying

depressed etc

- very weak, can't catch breath - I breathe but it's like I'm not getting any

oxygen, it's even worse out of the a/c, and it scares me how I have to suck in

air and try to calm myself. wierd! We had tornadoes the other nite and sirens

went off and we had to cram into the bathroom and cover us with mattress... only

I had to leave, I got so hot it made me sick, and gives me a bad headache.

- sensitivity to heat and sunlight - I have to sleep during the day, (in bedroom

with a/c) cuz I can't come out of the room wihtout major disruption in my body,

like Woody Woodpecker went super sonic in my head and I get light headed. This

has developed over the years, not just on treatment but got worse and worse each

year, and I love summer! and Texas summers are pretty darn hot. I have to cover

all my skin from sun and use a/c or I get sick. But I used to not be quite so

sensitive. Now, I can't even to go bathroom wihtout the heat making me sick. (we

have 2 window a/c units only, one in our bedroom and one in office/bedroom so

that's where I spend my summer, our house a/c bombed last summer and funds just

aren't there for the big one yet).

I think this is thyroid probably?, but all other thyroid tests the doc says in

normal. I did the end of treatment pcr and other blood tests a little over a

week ago, so maybe some of that is back already.

I expected side effects when I stopped combo. I did not expect my own doctor and

nurse to dismiss me as irrelevent now that I'm off combo. I was really hurt. I

have asked the nurse several times if there is something she can do for me? She

says well sometimes it gets that way. Now is that a brush off or what? Do you

think it's because I don't have insurance anymore? Hell, I pay them cash.

Or is it their method of getting the patient not to rely on meds? I didn't need

much meds during treatment, very few sides at all, so what is the problem with

helping me thru this now?

I called the nurse yesterday afternoon about 4pm, and said please, we have to do

something. Put me in a padded cell I don't care but I feel very " postal " . She

said let me look for your labs and chart and I'll call you back. Well, I know

they are busy that time of day but no call. So I called the guy on call and he

says nothing he can do for me, call back in the am.

Am I being a hyperchondriac? What am I doing wrong?

I expected a hard time off combo, cuz remember I did every other day shots, not

just 3 times a week. But man soon as I stopped, I got sick as a disembowled dog.

I've used up all my phenergen which has helped some with the nervousness and

jumpy tummy, but I'm all kinda groggy but I don't really mind cuz I know it's

just temp.

I dunno what to do. I was thinking of just getting some over the counter sleep

aids to take to help me with the grandkids. I have to sleep during the day, (in

bedroom with a/c) cuz I can't come out of the room wihtout major disruption in

my body, like Woody Woodpecker went super sonic in my head and I get light

headed. This is like Super Duper PMS 24/7 and more. I'm just at a loss why I

can't get help. Have I done something wrong?

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who can

say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

Hi people,

((( The previous letter on the sinus/migraine happened all this time I've also

been asking my gastro nurse for help so it all kinda ties in. I thot once I got

over the migraine and infection ti would help me feel better but nope. The

cortisone did, I know, but it'll wear off soon.)

As most of you know, I'm thru with my 48 weeks of treatment. I've been off the

combo about 3 weeks now almost 4.

The sides off the combo are 10 times worse than while I was on it.

I have called my gastro nurse 5 times in the last 3 weeks asking for help with

the sides and I get the brush off.

I have an appt with doctor the 10th and I'm ready to really tell him how the cow

ate the gastro lol.

Do they think that now I'm thru treatment I'm faking it?

If you'll remember, from the very first shot of interferon, I felt better. It

got rid of my joint pain and muscle aches. I was happy for that. Of course, over

time the interferon and riba build up in your system. The last 2 weeks of

treatment, i was getting open sores that wouldn't heal, itchy just icky symptoms

and the nurse said take a benadryl. Well, I take Allegra and Entex daily and a

nose spray and it didn't dawn on me not to mix the allegra and benadryl. Well I

think that is what made me sleep for 2 days. Benadryl knocks me out well over 12

hours anyway.

The " withdrawal " symptoms for me are a lot like what others are getting on

combo:

- restless twitchy legs when trying to sleep, have to get up and walk around on

them and work them out, but then come back soon as I try to relax

- muscle cramps esp in legs, toes, feet

- extreme mood swings (and i " m on the max antidepressant he said) yelling crying

depressed etc

- very weak, can't catch breath - I breathe but it's like I'm not getting any

oxygen, it's even worse out of the a/c, and it scares me how I have to suck in

air and try to calm myself. wierd! We had tornadoes the other nite and sirens

went off and we had to cram into the bathroom and cover us with mattress... only

I had to leave, I got so hot it made me sick, and gives me a bad headache.

- sensitivity to heat and sunlight - I have to sleep during the day, (in bedroom

with a/c) cuz I can't come out of the room wihtout major disruption in my body,

like Woody Woodpecker went super sonic in my head and I get light headed. This

has developed over the years, not just on treatment but got worse and worse each

year, and I love summer! and Texas summers are pretty darn hot. I have to cover

all my skin from sun and use a/c or I get sick. But I used to not be quite so

sensitive. Now, I can't even to go bathroom wihtout the heat making me sick. (we

have 2 window a/c units only, one in our bedroom and one in office/bedroom so

that's where I spend my summer, our house a/c bombed last summer and funds just

aren't there for the big one yet).

I think this is thyroid probably?, but all other thyroid tests the doc says in

normal. I did the end of treatment pcr and other blood tests a little over a

week ago, so maybe some of that is back already.

I expected side effects when I stopped combo. I did not expect my own doctor and

nurse to dismiss me as irrelevent now that I'm off combo. I was really hurt. I

have asked the nurse several times if there is something she can do for me? She

says well sometimes it gets that way. Now is that a brush off or what? Do you

think it's because I don't have insurance anymore? Hell, I pay them cash.

Or is it their method of getting the patient not to rely on meds? I didn't need

much meds during treatment, very few sides at all, so what is the problem with

helping me thru this now?

I called the nurse yesterday afternoon about 4pm, and said please, we have to do

something. Put me in a padded cell I don't care but I feel very " postal " . She

said let me look for your labs and chart and I'll call you back. Well, I know

they are busy that time of day but no call. So I called the guy on call and he

says nothing he can do for me, call back in the am.

Am I being a hyperchondriac? What am I doing wrong?

I expected a hard time off combo, cuz remember I did every other day shots, not

just 3 times a week. But man soon as I stopped, I got sick as a disembowled dog.

I've used up all my phenergen which has helped some with the nervousness and

jumpy tummy, but I'm all kinda groggy but I don't really mind cuz I know it's

just temp.

I dunno what to do. I was thinking of just getting some over the counter sleep

aids to take to help me with the grandkids. I have to sleep during the day, (in

bedroom with a/c) cuz I can't come out of the room wihtout major disruption in

my body, like Woody Woodpecker went super sonic in my head and I get light

headed. This is like Super Duper PMS 24/7 and more. I'm just at a loss why I

can't get help. Have I done something wrong?

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who can

say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

Hi people,

((( The previous letter on the sinus/migraine happened all this time I've also

been asking my gastro nurse for help so it all kinda ties in. I thot once I got

over the migraine and infection ti would help me feel better but nope. The

cortisone did, I know, but it'll wear off soon.)

As most of you know, I'm thru with my 48 weeks of treatment. I've been off the

combo about 3 weeks now almost 4.

The sides off the combo are 10 times worse than while I was on it.

I have called my gastro nurse 5 times in the last 3 weeks asking for help with

the sides and I get the brush off.

I have an appt with doctor the 10th and I'm ready to really tell him how the cow

ate the gastro lol.

Do they think that now I'm thru treatment I'm faking it?

If you'll remember, from the very first shot of interferon, I felt better. It

got rid of my joint pain and muscle aches. I was happy for that. Of course, over

time the interferon and riba build up in your system. The last 2 weeks of

treatment, i was getting open sores that wouldn't heal, itchy just icky symptoms

and the nurse said take a benadryl. Well, I take Allegra and Entex daily and a

nose spray and it didn't dawn on me not to mix the allegra and benadryl. Well I

think that is what made me sleep for 2 days. Benadryl knocks me out well over 12

hours anyway.

The " withdrawal " symptoms for me are a lot like what others are getting on

combo:

- restless twitchy legs when trying to sleep, have to get up and walk around on

them and work them out, but then come back soon as I try to relax

- muscle cramps esp in legs, toes, feet

- extreme mood swings (and i " m on the max antidepressant he said) yelling crying

depressed etc

- very weak, can't catch breath - I breathe but it's like I'm not getting any

oxygen, it's even worse out of the a/c, and it scares me how I have to suck in

air and try to calm myself. wierd! We had tornadoes the other nite and sirens

went off and we had to cram into the bathroom and cover us with mattress... only

I had to leave, I got so hot it made me sick, and gives me a bad headache.

- sensitivity to heat and sunlight - I have to sleep during the day, (in bedroom

with a/c) cuz I can't come out of the room wihtout major disruption in my body,

like Woody Woodpecker went super sonic in my head and I get light headed. This

has developed over the years, not just on treatment but got worse and worse each

year, and I love summer! and Texas summers are pretty darn hot. I have to cover

all my skin from sun and use a/c or I get sick. But I used to not be quite so

sensitive. Now, I can't even to go bathroom wihtout the heat making me sick. (we

have 2 window a/c units only, one in our bedroom and one in office/bedroom so

that's where I spend my summer, our house a/c bombed last summer and funds just

aren't there for the big one yet).

I think this is thyroid probably?, but all other thyroid tests the doc says in

normal. I did the end of treatment pcr and other blood tests a little over a

week ago, so maybe some of that is back already.

I expected side effects when I stopped combo. I did not expect my own doctor and

nurse to dismiss me as irrelevent now that I'm off combo. I was really hurt. I

have asked the nurse several times if there is something she can do for me? She

says well sometimes it gets that way. Now is that a brush off or what? Do you

think it's because I don't have insurance anymore? Hell, I pay them cash.

Or is it their method of getting the patient not to rely on meds? I didn't need

much meds during treatment, very few sides at all, so what is the problem with

helping me thru this now?

I called the nurse yesterday afternoon about 4pm, and said please, we have to do

something. Put me in a padded cell I don't care but I feel very " postal " . She

said let me look for your labs and chart and I'll call you back. Well, I know

they are busy that time of day but no call. So I called the guy on call and he

says nothing he can do for me, call back in the am.

Am I being a hyperchondriac? What am I doing wrong?

I expected a hard time off combo, cuz remember I did every other day shots, not

just 3 times a week. But man soon as I stopped, I got sick as a disembowled dog.

I've used up all my phenergen which has helped some with the nervousness and

jumpy tummy, but I'm all kinda groggy but I don't really mind cuz I know it's

just temp.

I dunno what to do. I was thinking of just getting some over the counter sleep

aids to take to help me with the grandkids. I have to sleep during the day, (in

bedroom with a/c) cuz I can't come out of the room wihtout major disruption in

my body, like Woody Woodpecker went super sonic in my head and I get light

headed. This is like Super Duper PMS 24/7 and more. I'm just at a loss why I

can't get help. Have I done something wrong?

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who can

say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

Hi people,

((( The previous letter on the sinus/migraine happened all this time I've also

been asking my gastro nurse for help so it all kinda ties in. I thot once I got

over the migraine and infection ti would help me feel better but nope. The

cortisone did, I know, but it'll wear off soon.)

As most of you know, I'm thru with my 48 weeks of treatment. I've been off the

combo about 3 weeks now almost 4.

The sides off the combo are 10 times worse than while I was on it.

I have called my gastro nurse 5 times in the last 3 weeks asking for help with

the sides and I get the brush off.

I have an appt with doctor the 10th and I'm ready to really tell him how the cow

ate the gastro lol.

Do they think that now I'm thru treatment I'm faking it?

If you'll remember, from the very first shot of interferon, I felt better. It

got rid of my joint pain and muscle aches. I was happy for that. Of course, over

time the interferon and riba build up in your system. The last 2 weeks of

treatment, i was getting open sores that wouldn't heal, itchy just icky symptoms

and the nurse said take a benadryl. Well, I take Allegra and Entex daily and a

nose spray and it didn't dawn on me not to mix the allegra and benadryl. Well I

think that is what made me sleep for 2 days. Benadryl knocks me out well over 12

hours anyway.

The " withdrawal " symptoms for me are a lot like what others are getting on

combo:

- restless twitchy legs when trying to sleep, have to get up and walk around on

them and work them out, but then come back soon as I try to relax

- muscle cramps esp in legs, toes, feet

- extreme mood swings (and i " m on the max antidepressant he said) yelling crying

depressed etc

- very weak, can't catch breath - I breathe but it's like I'm not getting any

oxygen, it's even worse out of the a/c, and it scares me how I have to suck in

air and try to calm myself. wierd! We had tornadoes the other nite and sirens

went off and we had to cram into the bathroom and cover us with mattress... only

I had to leave, I got so hot it made me sick, and gives me a bad headache.

- sensitivity to heat and sunlight - I have to sleep during the day, (in bedroom

with a/c) cuz I can't come out of the room wihtout major disruption in my body,

like Woody Woodpecker went super sonic in my head and I get light headed. This

has developed over the years, not just on treatment but got worse and worse each

year, and I love summer! and Texas summers are pretty darn hot. I have to cover

all my skin from sun and use a/c or I get sick. But I used to not be quite so

sensitive. Now, I can't even to go bathroom wihtout the heat making me sick. (we

have 2 window a/c units only, one in our bedroom and one in office/bedroom so

that's where I spend my summer, our house a/c bombed last summer and funds just

aren't there for the big one yet).

I think this is thyroid probably?, but all other thyroid tests the doc says in

normal. I did the end of treatment pcr and other blood tests a little over a

week ago, so maybe some of that is back already.

I expected side effects when I stopped combo. I did not expect my own doctor and

nurse to dismiss me as irrelevent now that I'm off combo. I was really hurt. I

have asked the nurse several times if there is something she can do for me? She

says well sometimes it gets that way. Now is that a brush off or what? Do you

think it's because I don't have insurance anymore? Hell, I pay them cash.

Or is it their method of getting the patient not to rely on meds? I didn't need

much meds during treatment, very few sides at all, so what is the problem with

helping me thru this now?

I called the nurse yesterday afternoon about 4pm, and said please, we have to do

something. Put me in a padded cell I don't care but I feel very " postal " . She

said let me look for your labs and chart and I'll call you back. Well, I know

they are busy that time of day but no call. So I called the guy on call and he

says nothing he can do for me, call back in the am.

Am I being a hyperchondriac? What am I doing wrong?

I expected a hard time off combo, cuz remember I did every other day shots, not

just 3 times a week. But man soon as I stopped, I got sick as a disembowled dog.

I've used up all my phenergen which has helped some with the nervousness and

jumpy tummy, but I'm all kinda groggy but I don't really mind cuz I know it's

just temp.

I dunno what to do. I was thinking of just getting some over the counter sleep

aids to take to help me with the grandkids. I have to sleep during the day, (in

bedroom with a/c) cuz I can't come out of the room wihtout major disruption in

my body, like Woody Woodpecker went super sonic in my head and I get light

headed. This is like Super Duper PMS 24/7 and more. I'm just at a loss why I

can't get help. Have I done something wrong?

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who can

say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

Hi,

I agree with Claudine that it seems there maybe something else going on with

you, the symptoms of

which were being supressed by IFN.

One always feels better off IFN than with IFN in the treatment of chronic

hepatitis.

[Guest guest]

Hi,

I agree with Claudine that it seems there maybe something else going on with

you, the symptoms of

which were being supressed by IFN.

One always feels better off IFN than with IFN in the treatment of chronic

hepatitis.

[Guest guest]

Hi,

I agree with Claudine that it seems there maybe something else going on with

you, the symptoms of

which were being supressed by IFN.

One always feels better off IFN than with IFN in the treatment of chronic

hepatitis.

[Guest guest]

Hi,

I agree with Claudine that it seems there maybe something else going on with

you, the symptoms of

which were being supressed by IFN.

One always feels better off IFN than with IFN in the treatment of chronic

hepatitis.

[Guest guest]

Hi Alley,

I sure hate to hear how awful you sound. I'm

pretty sure that the reason your doctor and nurse are

ignoring you is because there really aren't

'withdrawal' symptoms from the combo. Very few people

feel worse when they stop treatment. Most feel better

within a couple of weeks. Even people who have been

doing high daily dosing don't have anything like that.

However, sometimes what happens is the the interferon

was relieving some symptoms, ESPECIALLY if they are

being caused by cryoglobulinemia, and when you stop,

they start up again. And in your situation, as soon as

you started treatment your symptoms were relieved.

Sounds like now they are back. Were you ever tested

for cryo? A LOT of people with HCV will test positive

for this. And interferon IS the treatment for cryo. As

for your thyroid, I do remember that your TSH was

gradually climbing. A good endocrinologist will tell

you that most women feel better if their TSH is kept

below 2. However, ALL doctors, other than that

endocrinologist will say ANYTHING within the normal

range is - well, normal. The problem is that it might

not, probably isn't, what is BEST for you. You may

have subclinical hypothyroidism. check out these two

articles:

http://thyroid.about.com/health/thyroid/blchklst.htm

and

http://thyroid.about.com/health/thyroid/library/weekly/aa081499.htm

I found my endo through that site, he had basically

the same checklist to fill out, and now I'm on 2

hormones, T3 and T4, instead of the usuall T4 only,

and I feel 100% better now. That really could be the

cause of your fatigue. So could anemia, you aren't

anemic are you?

I'm don't know anything to tell you on the pain

meds. I would go to the ER. I have read that

hospitals MUST evaluate and treat your pain now, and I

really do think you will be treated better there than

from your gastro. (That's sad, isn't it!!!) I do

think that your weight might have something to do with

whatever dose you were given not working, but don't

know for sure. It just seems to make sense. Also,

liver disease can effect how your body is metabolizing

drugs. I usually need a LOWER dose, at least until I

know how I'm going to react.

I know nothing I've said really helps, sorry.

When will you get a POST-treatment PCR done?

Good luck!!!

Claudine

__________________________________________________

[Guest guest]

Hi Alley,

I sure hate to hear how awful you sound. I'm

pretty sure that the reason your doctor and nurse are

ignoring you is because there really aren't

'withdrawal' symptoms from the combo. Very few people

feel worse when they stop treatment. Most feel better

within a couple of weeks. Even people who have been

doing high daily dosing don't have anything like that.

However, sometimes what happens is the the interferon

was relieving some symptoms, ESPECIALLY if they are

being caused by cryoglobulinemia, and when you stop,

they start up again. And in your situation, as soon as

you started treatment your symptoms were relieved.

Sounds like now they are back. Were you ever tested

for cryo? A LOT of people with HCV will test positive

for this. And interferon IS the treatment for cryo. As

for your thyroid, I do remember that your TSH was

gradually climbing. A good endocrinologist will tell

you that most women feel better if their TSH is kept

below 2. However, ALL doctors, other than that

endocrinologist will say ANYTHING within the normal

range is - well, normal. The problem is that it might

not, probably isn't, what is BEST for you. You may

have subclinical hypothyroidism. check out these two

articles:

http://thyroid.about.com/health/thyroid/blchklst.htm

and

http://thyroid.about.com/health/thyroid/library/weekly/aa081499.htm

I found my endo through that site, he had basically

the same checklist to fill out, and now I'm on 2

hormones, T3 and T4, instead of the usuall T4 only,

and I feel 100% better now. That really could be the

cause of your fatigue. So could anemia, you aren't

anemic are you?

I'm don't know anything to tell you on the pain

meds. I would go to the ER. I have read that

hospitals MUST evaluate and treat your pain now, and I

really do think you will be treated better there than

from your gastro. (That's sad, isn't it!!!) I do

think that your weight might have something to do with

whatever dose you were given not working, but don't

know for sure. It just seems to make sense. Also,

liver disease can effect how your body is metabolizing

drugs. I usually need a LOWER dose, at least until I

know how I'm going to react.

I know nothing I've said really helps, sorry.

When will you get a POST-treatment PCR done?

Good luck!!!

Claudine

__________________________________________________

[Guest guest]

Hi Alley,

I sure hate to hear how awful you sound. I'm

pretty sure that the reason your doctor and nurse are

ignoring you is because there really aren't

'withdrawal' symptoms from the combo. Very few people

feel worse when they stop treatment. Most feel better

within a couple of weeks. Even people who have been

doing high daily dosing don't have anything like that.

However, sometimes what happens is the the interferon

was relieving some symptoms, ESPECIALLY if they are

being caused by cryoglobulinemia, and when you stop,

they start up again. And in your situation, as soon as

you started treatment your symptoms were relieved.

Sounds like now they are back. Were you ever tested

for cryo? A LOT of people with HCV will test positive

for this. And interferon IS the treatment for cryo. As

for your thyroid, I do remember that your TSH was

gradually climbing. A good endocrinologist will tell

you that most women feel better if their TSH is kept

below 2. However, ALL doctors, other than that

endocrinologist will say ANYTHING within the normal

range is - well, normal. The problem is that it might

not, probably isn't, what is BEST for you. You may

have subclinical hypothyroidism. check out these two

articles:

http://thyroid.about.com/health/thyroid/blchklst.htm

and

http://thyroid.about.com/health/thyroid/library/weekly/aa081499.htm

I found my endo through that site, he had basically

the same checklist to fill out, and now I'm on 2

hormones, T3 and T4, instead of the usuall T4 only,

and I feel 100% better now. That really could be the

cause of your fatigue. So could anemia, you aren't

anemic are you?

I'm don't know anything to tell you on the pain

meds. I would go to the ER. I have read that

hospitals MUST evaluate and treat your pain now, and I

really do think you will be treated better there than

from your gastro. (That's sad, isn't it!!!) I do

think that your weight might have something to do with

whatever dose you were given not working, but don't

know for sure. It just seems to make sense. Also,

liver disease can effect how your body is metabolizing

drugs. I usually need a LOWER dose, at least until I

know how I'm going to react.

I know nothing I've said really helps, sorry.

When will you get a POST-treatment PCR done?

Good luck!!!

Claudine

__________________________________________________

[Guest guest]

Hi Alley,

I sure hate to hear how awful you sound. I'm

pretty sure that the reason your doctor and nurse are

ignoring you is because there really aren't

'withdrawal' symptoms from the combo. Very few people

feel worse when they stop treatment. Most feel better

within a couple of weeks. Even people who have been

doing high daily dosing don't have anything like that.

However, sometimes what happens is the the interferon

was relieving some symptoms, ESPECIALLY if they are

being caused by cryoglobulinemia, and when you stop,

they start up again. And in your situation, as soon as

you started treatment your symptoms were relieved.

Sounds like now they are back. Were you ever tested

for cryo? A LOT of people with HCV will test positive

for this. And interferon IS the treatment for cryo. As

for your thyroid, I do remember that your TSH was

gradually climbing. A good endocrinologist will tell

you that most women feel better if their TSH is kept

below 2. However, ALL doctors, other than that

endocrinologist will say ANYTHING within the normal

range is - well, normal. The problem is that it might

not, probably isn't, what is BEST for you. You may

have subclinical hypothyroidism. check out these two

articles:

http://thyroid.about.com/health/thyroid/blchklst.htm

and

http://thyroid.about.com/health/thyroid/library/weekly/aa081499.htm

I found my endo through that site, he had basically

the same checklist to fill out, and now I'm on 2

hormones, T3 and T4, instead of the usuall T4 only,

and I feel 100% better now. That really could be the

cause of your fatigue. So could anemia, you aren't

anemic are you?

I'm don't know anything to tell you on the pain

meds. I would go to the ER. I have read that

hospitals MUST evaluate and treat your pain now, and I

really do think you will be treated better there than

from your gastro. (That's sad, isn't it!!!) I do

think that your weight might have something to do with

whatever dose you were given not working, but don't

know for sure. It just seems to make sense. Also,

liver disease can effect how your body is metabolizing

drugs. I usually need a LOWER dose, at least until I

know how I'm going to react.

I know nothing I've said really helps, sorry.

When will you get a POST-treatment PCR done?

Good luck!!!

Claudine

__________________________________________________

[Guest guest]

Claudine,

You might be right. However, I have talked to a few people who ended up with

some bad sides when finishing treatment, most got better with time. A few

however, had their brain and nevers permanently scrambled by the treatment.

I think mine is just temp, part of all the adjustment, because I do have

about 5 minutes a day of complete lucidity haha, and I am impatient!

I have returned to the max dose of effexor. I hate doing this on my own, but

my doctor seems unwilling to help. That has helped some. And I hate to admit

it, but unless I take something like the hydrocodone or fioricet or

phenergan I'm shaking all over and feel like I'm turning inside out.

<<Were you ever tested for cryo? >>

Nope, in the 10 years I've known about my hep, I've not been tested for

anything else.

<<You may have subclinical hypothyroidism. >>

Another good suggestion It's so nice to just know someone is listening

when you feel so helpless for yourself Thanks

I mean, it's not like I'm hiding from having someone help me. That I could

understand, that the doc didn't KNOW. But he does know. But.... this makes

me feel like some sort of outcast ya know. And what's worse, my emotional

state is so poor, it just amplifies those feelings. Intellectually, I KNOW

this but it is beyond my control at this point.

<<That really could be the cause of your fatigue. So could anemia, you

aren't anemic are you?>>

Cool maybe I will check that out. I'm almost 46 so I've been expecting some

hormonal changes anyway. That's one of the reasons I wanted to go ahead and

try treatment now, while I was mostly healthy.

I'm still waiting on the end of treatment pcr and lab results. No other

labwork showed me as below or above normal. Tho my results were changing

with each test, doc was amazed even that I managed to keep such great counts

for the whole 48 weeks.

thanks

alley /

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who

can say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

Alley'

Sad to hear you seem so down when you were so up and helpful to others when

on tx. Seems backward, would have to agree with Claudine about the

cryoglobulenemia, sounds like your sx were better on tx, which I find

totally backwards since I felt like I was going to die, not really just the

last three months when my blood levels on wbc and rbcs went down so low. no

much help here wither on your symptoms, just be persistent and maybe they

will do something, explain to them that the meds are not working and

possibly trying something else. plus your weight could havre a lot to do

with it, as the more you weigh often times you will need a higher dose, you

might remind them of how mush you weigh when you request medications,they

might not always look at the chart for your weight.

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[Guest guest]

Alley'

Sad to hear you seem so down when you were so up and helpful to others when

on tx. Seems backward, would have to agree with Claudine about the

cryoglobulenemia, sounds like your sx were better on tx, which I find

totally backwards since I felt like I was going to die, not really just the

last three months when my blood levels on wbc and rbcs went down so low. no

much help here wither on your symptoms, just be persistent and maybe they

will do something, explain to them that the meds are not working and

possibly trying something else. plus your weight could havre a lot to do

with it, as the more you weigh often times you will need a higher dose, you

might remind them of how mush you weigh when you request medications,they

might not always look at the chart for your weight.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi yall and thanks for your input.

I talked to gastro nurse today. She says my thyroid is perfectly normal at

5.68. She says normal is 0.5 to 6. However I have read thanks to Doc and

Claudine that the ideal thyroid TSH number is 2. I've seen it slowly

climbing each month and back in Nov I was constantly sweating and hot and

uncomfortable and the P.A. then said it's my thyroid going up.

I've returned to the max dose of Effexor (150 mg) twice a day and it has

helped some. And I have been taking the hydrocodone later in the day (my

awake time is really nite due to the heat making me so sick). After 4 or 5

hours awake, I start getting even more jittery, it just sort of builds as I

get tired and it's like I'm gonna implode.

I'm shopping for straight jackets now but can only find them under " torture "

hahahaha.

I dunno. I have no money nor insurance to go to my primary doc, and esp not

for him to run any tests. Tomorrow I see my gastro, prolly the last time,

maybe again in 6 months or so. Nurse didn't say what my pcr was. I don't

even care at this point. Maybe i can work something out with my primary.

He's known me over 20 years and has been good about arranging financial

payouts, but we already owe him cuz hubby's insurance is being a pain and

not paying for his visits. (Don't get Pacificare, they suck)

hugs to you all. Thanks for even listening. It's nice to be able to whine a

little and *itch a lot

alley

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who

can say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

----------

>From: " Alley/Pat " <alleypat@...>

However, I have talked to a few people who ended up with

> some bad sides when finishing treatment, most got better with time. A few

> however, had their brain and nevers permanently scrambled by the treatment.

Pat-

Some of your symptoms are similar to what I experienced upon cessation of my

last round of rx. The leg cramps or 'charlie horses' started up soon after

I stopped-I upped (almost doubled) my intake of calcium and it helped

immensely. The cramps have now stopped (it is now almost 2 years off rx

back to normal level of calcium intake.) I also had trouble with depression

after I stopped. I did not do anything about it, just let it die out on its

own-it was better than the almost homicidal anger I felt whilst on rx. I

still have the 'digestive' problems that cropped up during treatment and the

damn dry-eye syndrome. My sleep cycle seems to have shifted-I would be

most happy working 2nd shift now! Anyway, this is just to let you know that

going off treatment isn't always a piece of cake. I hope that by this time

you feel better or have gotten some answers from the docs-you sound drastic

to say the least!

gail

[Guest guest]

----------

>From: " Alley/Pat " <alleypat@...>

However, I have talked to a few people who ended up with

> some bad sides when finishing treatment, most got better with time. A few

> however, had their brain and nevers permanently scrambled by the treatment.

Pat-

Some of your symptoms are similar to what I experienced upon cessation of my

last round of rx. The leg cramps or 'charlie horses' started up soon after

I stopped-I upped (almost doubled) my intake of calcium and it helped

immensely. The cramps have now stopped (it is now almost 2 years off rx

back to normal level of calcium intake.) I also had trouble with depression

after I stopped. I did not do anything about it, just let it die out on its

own-it was better than the almost homicidal anger I felt whilst on rx. I

still have the 'digestive' problems that cropped up during treatment and the

damn dry-eye syndrome. My sleep cycle seems to have shifted-I would be

most happy working 2nd shift now! Anyway, this is just to let you know that

going off treatment isn't always a piece of cake. I hope that by this time

you feel better or have gotten some answers from the docs-you sound drastic

to say the least!

gail

[Guest guest]

Dear Beth,

I don't have any experience with meningits but I know there are folks on this

site that do and Im sure that someone will be calling you soon. I can't

offer any help but I can Pray! I'll be praying for you and Wade

le

[Guest guest]

Beth,

I have no experience with aseptic meningitis, but I want you to know that we

are praying for your son. Please keep us up to date.

God Bless,

Temme -Dylan 9, Hunter 7, agamma...

Need advice PLEASE

Hello all,

I have a million people I want to write to but right now I need to ask if

anyone has had any experience with Aseptic Meningits in an immune deficient

patient. was admitted to the hospital on Sunday night & is still

there. The docs are saying Aseptic Meningits because his csf did have more

than the normal number of wbc's & also some rbc's, but not enough to be

viral or bacterial meninigits. The infectious disease doc told me that

essentially he has a virus in his central nervous system & he has sent the

csf away for pcr tests to determine which virus is there. Apparently,an

enterovirus, echovirus or varicella virus could be especially dangerous due

to the CVID, so we are waiting for the results & basically they are giving

him iv fluids & iv pain meds to try to keep him more comfortable until they

can find out what virus it is & decide what to treat it with. This is all

" new " territory to me, so if anyone has any advice, comments on what I can

expect,etc. I would love to hear from you. I am not staying at the hospital

around the clock but I am in & out of there quite a bit, so the best way to

reach me is probably on the phone in his room (313-642-9384). We do seem to

have really good docs & neurology, infectious diseases, rheumatology & his

ped are all seeing him & they have been in touch with his immunologist &

they are all putting their heads together. He is more comfortable now & he

does look a bit better today.

Sorry for the " rush job " & for not writing in more often! The last month has

been crazy with iv antibiotics for sinus infection & inner ear infection &

now this on top of it all. I will do better in the future!

Hope all the kiddos are as well as they can be & are enjoying the SPring

weather!

Love,

Beth

Mom to (Wade), 15, CVID,Asthma,GERD,JRA,ADD,Chronic Sinusitis,IVIG

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This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Beth, sorry I don't know anything -- but I'll be praying!

In His service, Dale

[Guest guest]

Dear Beth:

I'm not calling with this info because it's possibly useless. I remember that

has had " aseptic meningitis " multiple times after IVIG and I had

asked her to explain it before. You might be able to find that in the

archives. The main thing I remember is it seems to me the " aseptic " meant

not-infectious, that is, (I hope I'm getting this right) that you have many

symptoms of meningitis but no actual infection. But I don't know that you

would have wbcs and rbcs in the csf if there was no infection?

I'll be praying that there's no infection of any kind and that he recovers

soon.

(mom to , age 3, polysaccharide antibody def)

[Guest guest]

le,

Thanks for responding & for the prayers! Sorry to hear is back on ivig

but I know well the road you have & are traveling & feel like you do that if

being on ivig helps his quality of life, then so be it. All in all, it's a

small price to pay.....in my opinion anyway.

Wade was just started on the Sinuneb nebulized abtibiotics last week. So

far, so good...but we had to stop when he went inot the hospital with the

aseptic meningitis & we will probably start them back next week. The ped

wants us to wait until Wade's system clears a bit from the virus & drugs of

the last few days.

Good news.....Wade was released from the hospital tonight & we just got

home! He is home on oral Toradol for a week & rest, while we wait for the

pending csf cultures,etc. The general consensus of the infectious disease

doc, ped,etc. this afternoon is that this is Aseptic Menigitis most likely

from the ivig infusion. So we have to watch closely after his next infusion

to be sure that he doesn't have the same symptoms again & if he does , he

will have to have another spinal tap to check the csf again. He has to stay

out of school for the next week at least, to build back up his strength &

also to wait for the culture results. We are just very happy to have him

home.

I'll update more tomorrow.

Love,

Beth, Mom to Wade (CVID,etc.)

>From: daniellepenne@...

>Reply-

>

>Subject: Re: Need advice PLEASE

>Date: Thu, 25 Apr 2002 13:52:03 EDT

>

>Dear Beth,

>I don't have any experience with meningits but I know there are folks on

>this

>site that do and Im sure that someone will be calling you soon. I can't

>offer any help but I can Pray! I'll be praying for you and Wade

>le

_________________________________________________________________

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[Guest guest]

Also, where are your veggies? You should have at least 2 servings of

veggies a day.

Colleen

>

>

> > I was hoping someone would be kind enough to help me

> > out. I have been doing bfl for 4 weeks now and I

> > haven't noticed much change by scale or by the fit of

> > my clothes. So I am posting what I have been eating

> > and how I spend my time at the gym hoping to get some

> > pointers and anything I might be doing wrong. Thank

> > you for you help. Oh yeah, just to let you know in

> > case it might help. I'm 5' 3 " and 120 pounds. I'm not

> > sure of bf% but I would like to lose fat and gain

> > muscle.

> >

> > 6am 6 egg whites

> > ½ cup oatmeal

> > 1 tbsp flax oil

> > 9am power bar

> > 12pm protein shake

> > 1 tbsp natural peanut butter

> > 3pm ½ cup cottage cheese

> > fat-free yogurt

> > 6pm tuna

> > yam

> > 8pm ½ cup cottage cheese

> > peach

> >

> > 1472 cals

> > 32 fats (20%)

> > 150 carbs (38%)

> > 146 protein (42%)

> >

> > I spend 35 minutes on the elliptical and 35 minutes

> > lifting weights, 5 days a week.

> > Thank You

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

,

Have you taken measurements? If so, I'd compare and see if see any

changes. I know in week 4 I had only lost 1/2-1 lb but had

significant changes in waist and hip measurements.

As far as diet, the first thing I do is throw out the Power

Bars...definitely not BFL; not enough protein, too high in carbs and

sugar. Also what is in your protein shake, fruit or something? If

not, where are your carbs for that meal. Every meal should be protein

and carbs. What is the sugar content in your yogurt? You may want

to cut down to 1/2 tbsp of peanut butter also. Some things suggested

to me to really crunch down are (and these are just suggestions some

people do find without changing them)

limit fruit to once a day

limit processed carbs (bread, etc. to 1 serving per day if you have

to have it all, but try to eliminate it) and also try to eliminate

the yogurt if you can

Make sure you are drinking your water also

Also are you doing BFL workouts? If so, you should be doing 20MAS or

HIIT 3 times a week and lifting 3 times a week.

Colleen

> I was hoping someone would be kind enough to help me

> out. I have been doing bfl for 4 weeks now and I

> haven't noticed much change by scale or by the fit of

> my clothes. So I am posting what I have been eating

> and how I spend my time at the gym hoping to get some

> pointers and anything I might be doing wrong. Thank

> you for you help. Oh yeah, just to let you know in

> case it might help. I'm 5' 3 " and 120 pounds. I'm not

> sure of bf% but I would like to lose fat and gain

> muscle.

>

> 6am 6 egg whites

> ½ cup oatmeal

> 1 tbsp flax oil

> 9am power bar

> 12pm protein shake

> 1 tbsp natural peanut butter

> 3pm ½ cup cottage cheese

> fat-free yogurt

> 6pm tuna

> yam

> 8pm ½ cup cottage cheese

> peach

>

> 1472 cals

> 32 fats (20%)

> 150 carbs (38%)

> 146 protein (42%)

>

> I spend 35 minutes on the elliptical and 35 minutes

> lifting weights, 5 days a week.

> Thank You

>

>

>

>

> __________________________________________________

>