Questions

[Guest guest]

Yes, you have responded to the right place!  Working from home is a good thing when you are going thru treatment.  Granted we have no clue what your journey will be like because  everyone is different but if you do have a rough time at least you won't have to be driving an hour a day to and from work.  

I didn't use any supplements for a variety of reasons.  One, nobody suggested it.  Two, I hate taking pills anyway.  During treatment I took 14 pills plus my blood pressure medication, my thyroid medication, stomach medication, pain pills....  I probably swallowed around 20 to 25 pills a day.  My doctor was pretty straightforward about his way of treatment.. he knew everything I was taking.  I was dealing with a total of 3 doctors.  My GP, who graciously took a backseat for a year, my Liver Specialist who ran the circus, and my OB/Gyn because I had some anemia issues before treatment even started.  These 3 guys were on the phone with each other once a week.  Nothing happened without it getting approved by the Liver guy.  I guess supplements were never even thought of.  I didn't know they existed back then.  

Treatment itself will make you dehydrated.  Those drugs need lots of water.  The minimum amount of water you need to take in on treatment is a gallon a day.  MINIMUM.  If you are dehydrated your side effects will be worse, to the point that they can be unbearable.  I was told absolutely no caffeine whatsoever.  I gave it up for 48 weeks.  It sucked but I did it.  Actually, the cokes didn't taste the same once treatment started anyway so it didn't matter.  

Your doctor will lay all of this out to you in full detail.. or at least he should..    Any supplements that you wind up taking, make sure the doctor is aware of them.   Some of them do not mix well with the drugs used in treatment.  You will want to make sure that your doctor knows what you are taking.  

Hugs,TeriOn Mon, Dec 13, 2010 at 8:50 PM, groundzero81876 <baggio@...> wrote:

 

Thanks for your response Teri,

Did I respond in the right place? I hope so.

You brought up a lot for me to think about. I am self employed, so if I don't work, I don't eat. The good news is that most of my work I do from my home office. Hopefully I will have the strength to work at least some of the time if I have severe symptoms. I'll just have to wait and see. I do have family and friends that will watch out for me and hold my hand if necessary. I'm surprised to hear that you didn't use any types of supplements, but I understand. I'm very skeptical, but also feel that there could be some things that might help. I hate taking pills/medicine of any kind. Right now I take a high blood pressure pill, a fish oil pill and a baby aspirin once a day. I read that I should drink lots of water, which is something i struggle with on a daily basis. I am chronically dehydrated and have to really force myself to get enough fluids. The recommendations seem to vary, but I read from 3-4 liters per day. The other thing that someone suggested was no caffeine, yet I read of a study that shows that caffeine drinkers have a better response to treatment. I am massively confused by all the mumbo jumbo.

I'll keep reading and trying to figure out what's right for me.

Thanks again.

Jon

>

> >

> >

> > Hello Warriors,

> > I just signed up for this site today. I have a few questions that maybe

> > some of you can assist me with. Some background info: I was first diagnosed

> > about eight years ago and have likely had HEPC since I was an IV drug user

> > through 1974. My initial biopsy when I was diagnosed indicated mild damage

> > and my family doctor recommended that I start treatment at that time. I have

> > avoided treatment for a variety of reasons: fear, lack of health insurance

> > for a span of 5-6 years. I have been under the illusion that I have been

> > healthy. I play soccer 3-4 days a week, workout in a fitness boot camp 3

> > days a week. Outward appearances are that I am healthy with the exception of

> > increasing fatique. A biopsy last month indicates that I have beginning

> > stages of Cirrhosis, so it looks like I am going to have to do something.

> > Apparently it's not going away! I have been clean and sober since 1976, so

> > it has taken 36 years + to catch up with me. I can't imagine what kind of

> > shape I'd be in if I had continued drinking. Likely, I wouldn't still be

> > here talking about it. My Gastro just had me take a supposed new IL28b

> > genetic test to determine my genotype 1 subtype. I came up with a " CC "

> > genotype, which according to him has a greater than 80% chance of sustained

> > virlogic response with Pegasys. He suggested that I start Pegasys now

> > instead of waiting for the so called miracle treatment that the FDA is

> > supposed to approve next summer. I just passed a stress test and I will

> > likely get my Pegasys prescription on January 4th. Does this sound like a

> > good plan? Also, what supplements should I be taking? I know there are a lot

> > of crazy ideas out there on some of this stuff, so I am skeptical. I don't

> > want to take 40 pills a day that might be a good idea. Also, how do I know

> > what is good and what could actually cause me more harm?

> > Thanks for reading,

> >

> > Jon from sville, OH

> >

> >

> >

>

[Guest guest]

My son has been in the helmet for almost 3 months, and we have a check up soon

but a wk ago he tested positive for RSV, and is at the end of a double ear

infection, with teething on top of it all. We have had to keep the helmet off to

monitor his temp because it keeps climbing to 103+. How many days till his

helmet won't fit correctly??? At 10 months old do you think his head could shape

back to its old way if he still sleeps on his back??? Thanks for the help..

son 12 wks in hanger helmet

[Guest guest]

You might see the angles between skull plates regress in the first

four days, but I don't think you can lose shape within the plates,

the bone growth that the helmet has already redirected. So, in my

opinion, what happens while the helmet is off, depends on how bad

that " angular regression " is, such that if there's no circumferential

growth in this period, you won't lose anything at all. When the

helmet is reintroduced, the sutures will simply flex back to where

you left off.

With that in mind, I wouldn't allow the orthotist to assess the fit

until the helmet has been on again two days. If an adjustment is

required, it probably would have been needed anyway.

--

Thad Launderville

town, VT

Clara nearing age 3, STARband '10

On Mar 21, 2011, at 10:38 PM, jamiewells2110@... wrote:

> My son has been in the helmet for almost 3 months, and we have a

> check up soon but a wk ago he tested positive for RSV, and is at

> the end of a double ear infection, with teething on top of it all.

> We have had to keep the helmet off to monitor his temp because it

> keeps climbing to 103+. How many days till his helmet won't fit

> correctly??? At 10 months old do you think his head could shape

> back to its old way if he still sleeps on his back??? Thanks for

> the help..

>

> son 12 wks in hanger helmet

[Guest guest]

Hi ,

Sorry to hear he was hospitalized. It must be very stressful for you .

-christine

sydney, 5 yrs, starband grad

> > >

> > > My son has been in the helmet for almost 3 months, and we have a check up

soon but a wk ago he tested positive for RSV, and is at the end of a double ear

infection, with teething on top of it all. We have had to keep the helmet off to

monitor his temp because it keeps climbing to 103+. How many days till his

helmet won't fit correctly??? At 10 months old do you think his head could shape

back to its old way if he still sleeps on his back??? Thanks for the help..

> > >

> > > son 12 wks in hanger helmet

> > >

> >

>

[Guest guest]

Carmen,

We are finally home after 5 days in the hospital he has been out of the

helmet for more than a week. Hanger was suppose to visit us while we were there

but never showed up. We were suppose to have an appt on Wed but we were unable

to make it. I hope we did not go backwards with this measurements. I do not know

if the blanket rolled up will work with his because he rolls and scoots to where

he wants to be. I am just going to pray we can get in to see out ortho on

Monday.

> > >

> > > My son has been in the helmet for almost 3 months, and we have a check up

> >soon but a wk ago he tested positive for RSV, and is at the end of a double

ear

> >infection, with teething on top of it all. We have had to keep the helmet off

to

> >monitor his temp because it keeps climbing to 103+. How many days till his

> >helmet won't fit correctly??? At 10 months old do you think his head could

shape

> >back to its old way if he still sleeps on his back??? Thanks for the help..

> > >

> > > son 12 wks in hanger helmet

> > >

> >

>

[Guest guest]

Sydney,

We are finally home after 5 days. I am worried since it has been a week

without the helmet that he will go backwards in measurements. I hope we can see

our ortho on Monday.

> > > >

> > > > My son has been in the helmet for almost 3 months, and we have a check

up soon but a wk ago he tested positive for RSV, and is at the end of a double

ear infection, with teething on top of it all. We have had to keep the helmet

off to monitor his temp because it keeps climbing to 103+. How many days till

his helmet won't fit correctly??? At 10 months old do you think his head could

shape back to its old way if he still sleeps on his back??? Thanks for the

help..

> > > >

> > > > son 12 wks in hanger helmet

> > > >

> > >

> >

>