Re: Re: Viral load flucuations...

[Guest guest]

Dear Karolyn,

I totally sympathize with you about finances. I am so utterly frustrated

about the cost of alternative treatments. I earn a good living but between

missing work because I'm sick and child support I barely make it. I was a

" salaried " employee but got switched to hourly because I missed so much

work. I apologize for crying on your shoulder but the warriors are just

about all I have. God bless you all for just listening. Danny

[ ] Re: Viral load flucuations...

> Hi Grace,

> I don't know anything about fluctuating levels; but, personally, I

> would be concerned with alt and ast at such high levels. My viral

> load as of April was 7,330,000, but my ast and alt were, and have

> consistently been, within normal range. Changing my diet and taking a

> zillion (well, not quite a zillion!)supplements a day has been

> relatively easy; and besides being a good thing to do, it makes me

> feel for the first time in my life that I am truly in charge of and

> taking care of my body and not leaving it in the hands of some doctor

> who may or may not know what he's doing. Not that I don't have a

> doctor, but I have a doctor who is sympathetic to alternative

> treatment. I dropped my gastro because he was so close-minded. I go

> for bloodwork in October and am sure there will be a drop in viral

> load. My only wish is that I was in a better financial situation to

> take advantage of more holistic methods.

> Love, Karolyn

>

> > > my viral load dropped from ovre 650,000 to 325,000

> > > in 6 months just from diet

> > > , water vitamins and milk thistle... no meat no

> > > grease no fried food no

> > > alcohol .. i think the right balance of exercise [

> > > even when i feel like crap

> > > ] and rest is important.. to much of either one

> > > makes me feel worse also i

> > > drink whey protein and eat lots of bananas all liver

> > > functions are now normal

> > > next thing i've got to reduce is stress my weight

> > > dropped from 235 to 200

> > > and i eat all i want

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi Karolyn,

Thanks for your note. Yes, my high AST/ALT have been

a concern from the beginning - that's why I opted to

try treatment. My doctor was very concerned - he had

never seen an ALT reading over 1000 in someone with

Hep C and nothing else, so I've been tested for about

every auto immune disease/disorder under the sun as

well as cancer. And having grade 1, stage 1 after

only 1 1/2 years of having the virus was not a good

sign either.

I'm finding that I don't fit into any category that

starts with " the majority... " I was extremely ill in

the acute stage of the virus. I fell into the 2% of

folks that have a seriously bad reaction to an

endoscopy (a simple procedure and it almost killed

me). And I fall into the category that has none of

the exposure risks related to acquiring the virus. It

seemingly just showed up on day...

Now on treatment I have heard/read about so many folks

that lost their appetite, lost weight, and couldn't

work. I still eat everything I want, I've gained 4

pounds and I work full time.

After the first 4 weeks of Peg Combo, my AST/ALT have

gone from 150/256 to 18/15. I'm pretty happy with

those results.

I have learned along the way to keep in perspective

when folks say, 'this' works or 'that' works as I've

found that more often than not - even though it does

apply to them, it doesn't apply to me . I rely on how

I feel and what my blood work indicates to guide me in

my decisions - it can be hard at times as there are

many folks out there who think or profess to have all

the answers not just for themselves but for everyone.

And if there is one thing that has been reinforced on

my journey with this virus and tx is that we are

individuals and therefore very different. In that way

- I support anyone that finds something that works for

them.

I listen to what my doctor has to say, I do as much

research as I can. Then I go with my gut instincts

and trust myself.

It seems to be working for me so far.

Take care,

Grace

--- karolynt47 <karolyn1@...> wrote:

> Hi Grace,

> I don't know anything about fluctuating levels; but,

> personally, I

> would be concerned with alt and ast at such high

> levels. My viral

> load as of April was 7,330,000, but my ast and alt

> were, and have

> consistently been, within normal range. Changing my

> diet and taking a

> zillion (well, not quite a zillion!)supplements a

> day has been

> relatively easy; and besides being a good thing to

> do, it makes me

> feel for the first time in my life that I am truly

> in charge of and

> taking care of my body and not leaving it in the

> hands of some doctor

> who may or may not know what he's doing. Not that I

> don't have a

> doctor, but I have a doctor who is sympathetic to

> alternative

> treatment. I dropped my gastro because he was so

> close-minded. I go

> for bloodwork in October and am sure there will be a

> drop in viral

> load. My only wish is that I was in a better

> financial situation to

> take advantage of more holistic methods.

> Love, Karolyn

>

> > > my viral load dropped from ovre 650,000 to

> 325,000

> > > in 6 months just from diet

> > > , water vitamins and milk thistle... no meat no

> > > grease no fried food no

> > > alcohol .. i think the right balance of exercise

> [

> > > even when i feel like crap

> > > ] and rest is important.. to much of either one

> > > makes me feel worse also i

> > > drink whey protein and eat lots of bananas all

> liver

> > > functions are now normal

> > > next thing i've got to reduce is stress my

> weight

> > > dropped from 235 to 200

> > > and i eat all i want

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

To my dear hepper friends,

I'm sure we have all encountered physicians that don't have a clue

concerning our illness but I've got one that takes the cake. My primary

physician being fully aware of my situation actually attempted to prescribe

Vicoden to me for headaches. Unbelievable. Beware my friends. Danny

[ ] Re: Viral load flucuations...

> Hi Grace - You are absolutely right. Even though I'm one of those

> people who don't trust drugs and those who make them, I don't push my

> beliefs on anyone, although I do make suggestions at times. We all

> have our own paths to trod. God bless. Karolyn

>

> > > > > my viral load dropped from ovre 650,000 to

> > > 325,000

> > > > > in 6 months just from diet

> > > > > , water vitamins and milk thistle... no meat no

> > > > > grease no fried food no

> > > > > alcohol .. i think the right balance of exercise

> > > [

> > > > > even when i feel like crap

> > > > > ] and rest is important.. to much of either one

> > > > > makes me feel worse also i

> > > > > drink whey protein and eat lots of bananas all

> > > liver

> > > > > functions are now normal

> > > > > next thing i've got to reduce is stress my

> > > weight

> > > > > dropped from 235 to 200

> > > > > and i eat all i want

> > > > >

> > > >

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

Danny,

Just had to stick my big ole' nose in here. This is what a support group is supposed to be about - information when you can give it, and support when you can give it. We all take our turns having ups and downs.

Marilyn

Re: [ ] Re: Viral load flucuations...

Dear Karolyn,I totally sympathize with you about finances. I am so utterly frustratedabout the cost of alternative treatments. I earn a good living but betweenmissing work because I'm sick and child support I barely make it. I was a"salaried" employee but got switched to hourly because I missed so muchwork. I apologize for crying on your shoulder but the warriors are justabout all I have. God bless you all for just listening. Danny

[Guest guest]

--- karolynt47 <karolyn1@...> wrote:

> Hi Grace,

> I don't know anything about fluctuating levels; but, personally, I

> would be concerned with alt and ast at such high levels. My viral

> load as of April was 7,330,000, but my ast and alt were, and have

> consistently been, within normal range.

If Grace's ALT were that high during and immediately following the

acute phase that is not that bad. It's common for them to be high at

that time - although most of us never even know (knew) when that was!

If they continue to stay that high (even 200 is more than 4 times

normal by most lab's ranges) then I would be concerned since it could

mean a lot of inflammation is going on, and it's that chronic

inflammation that eventually causes cells to die and scar tissue to

form. On the other hand, normal LFT's don't mean nothing bad is

happening. Something like 1/4 - 1/3 of those with normal LFT have at

least some damage, and some even have cirrhosis. Actually, it's quite

common for LFT's to become normal when cirrhosis develops. When there

aren't enough healthy liver cells left to excrete those enzymes the

levels drop within normal range. Also, LFT's can fluctuate up and

down a lot, and it's not significant. All these tests - they really

have to be looked at as just one piece of the puzzle. Very few tests

are really significant in and of themselves, except perhaps the

biopsy. That is the one test can really tell you the best, most

useful information.

Claudine

>

__________________________________________________

[Guest guest]

I too had normal ast and alt and looked by all accounts healthy(lab wise) except for viral load of moderate range and a stage 3 cirrhosis.I believe the biopsy is the only way to tell...,and that is a story in itself.Best wishes,Laurie

claudine intexas wrote:

--- karolynt47 <karolyn1@...> wrote:> Hi Grace,> I don't know anything about fluctuating levels; but, personally, I > would be concerned with alt and ast at such high levels. My viral > load as of April was 7,330,000, but my ast and alt were, and have > consistently been, within normal range. If Grace's ALT were that high during and immediately following theacute phase that is not that bad. It's common for them to be high atthat time - although most of us never even know (knew) when that was!If they continue to stay that high (even 200 is more than 4 timesnormal by most lab's ranges) then I would be concerned since it couldmean a lot of inflammation is going on, and it's that chronicinflammation that eventually causes cells to die and scar tissue toform. On the other hand, normal LFT's don't mean nothing bad ishappening. Something like 1/4 - 1/3 of those with normal LFT have atleast some damage, and some even have cirrhosis. Actually, it's quitecommon for LFT's to become normal when cirrhosis develops. When therearen't enough healthy liver cells left to excrete those enzymes thelevels drop within normal range. Also, LFT's can fluctuate up anddown a lot, and it's not significant. All these tests - they reallyhave to be looked at as just one piece of the puzzle. Very few testsare really significant in and of themselves, except perhaps thebiopsy. That is the one test can really tell you the best, mostuseful information.Claudine> __________________________________________________

[Guest guest]

--- dnails <dnails@...> wrote:

I am so utterly

> frustrated

> about the cost of alternative treatments.

Danny,

I used to spend more on alternatives than I did on my

prescription medications! I would suggest some serious research (and

I don't mean the 'sales pitches') on any alternative you are

considering taking, and narrow down what you take to the best, the

ones that show some actual proof that they might help. Keep in mind

that my previous biospy showed no fibrosis, but I have eliminated

almost everything I used to take. For my HCV specifically I take milk

thistle (and I do urge you to NOT pinch pennies on this one - buy the

best you can afford), and vitamin E, 800IU daily. I also take a multi

without iron (from Walmart, a three month supply is about $8.00 I

think; extra calcium, magnesium and zinc (I have early osteoporsis)

and 1000mg of time released vitamin C at night. If I had more serious

progression of fibrosis or inflammation I might add other things,

like alpha-lipoic acid, bupleurum (never to be taken with

interferon!), lactoferrin (especially if I was planning to go on

treatment) - I would consider some Chinese herbs IF (and that is a

big if) I could find a very reputable source for the herbs.

Personnally, I think the milk thistle and vitamin E are are the two

best things for your liver. As for the E, I buy the cheapest brand I

can find, synthetic only.

Good luck,

Claudine

__________________________________________________

[Guest guest]

> After the first 4 weeks of Peg Combo, my AST/ALT have

> gone from 150/256 to 18/15. I'm pretty happy with

> those results.

Grace, those are wonderful results! Hang in there - that is a VERY

positive sign!

Claudine

__________________________________________________

[Guest guest]

Thank you so much Claudine... it's not been easy and I

have a whole new repsect for anyone that's done it.

Some days... well, I just hope to have the strength

and determination to see it through to the end!

--- claudine intexas <claudineintexas@...>

wrote:

>

>

> > After the first 4 weeks of Peg Combo, my AST/ALT

> have

> > gone from 150/256 to 18/15. I'm pretty happy with

> > those results.

>

> Grace, those are wonderful results! Hang in there -

> that is a VERY

> positive sign!

>

> Claudine

>

> __________________________________________________

>

[Guest guest]

This is in response to the advice given Danny about what to take. I'm in

agreement with most of what was said. The exception is to the Vitamin E.

Just as I would not buy cheap milk thistle, I would not buy a synthetic form

of Vitamin E. Here again, one gets what one pays for. It should be taken

in it's natural form, d-alpha tocopherol. The natural form is twice as

active. Natural Vitamin E is also retained twice as long in the body as

synthetic Vitamin E, which means that it can build up and stay at higher

levels. Natural E also contains more than just d-alpha tocopherol. It is

typically combined with other forms, such as gamma tocopherol, that appear

to offer added protection. Gamma tocopherol also has powerful antioxidant

properties. These other tocopherols are not present in synthetic Vitamin E.

Just something to consider when you're buying Vitamin E...what do you want

it to do and then purchase it with that in mind. Janie

Re: [ ] Re: Viral load flucuations...

>

> --- dnails <dnails@...> wrote:

> I am so utterly

> > frustrated

> > about the cost of alternative treatments.

>

> Danny,

> I used to spend more on alternatives than I did on my

> prescription medications! I would suggest some serious research (and

> I don't mean the 'sales pitches') on any alternative you are

> considering taking, and narrow down what you take to the best, the

> ones that show some actual proof that they might help. Keep in mind

> that my previous biospy showed no fibrosis, but I have eliminated

> almost everything I used to take. For my HCV specifically I take milk

> thistle (and I do urge you to NOT pinch pennies on this one - buy the

> best you can afford), and vitamin E, 800IU daily. I also take a multi

> without iron (from Walmart, a three month supply is about $8.00 I

> think; extra calcium, magnesium and zinc (I have early osteoporsis)

> and 1000mg of time released vitamin C at night. If I had more serious

> progression of fibrosis or inflammation I might add other things,

> like alpha-lipoic acid, bupleurum (never to be taken with

> interferon!), lactoferrin (especially if I was planning to go on

> treatment) - I would consider some Chinese herbs IF (and that is a

> big if) I could find a very reputable source for the herbs.

> Personnally, I think the milk thistle and vitamin E are are the two

> best things for your liver. As for the E, I buy the cheapest brand I

> can find, synthetic only.

> Good luck,

> Claudine

>

> __________________________________________________

>

[Guest guest]

Marilyn,

How do you get people to join a support group. We have one in Fargo, ND. But it is not a big group although we know there are many in the area that are diagnosed with hep c. How do we get people to get over any notions that it is something to be ashamed of. And I know that some arent ashamed but others around them would cause problems.

Looking for ideas,

Dawn

[Guest guest]

Hi Janie,

I understand where you are coming from, and normally I would agree

with your reasoning that natural is better. And maybe it is. It is

absorbed better than synthetic. But, all the studies using vitamin E

in various liver diseases have used the synthetic form and it worked

great. Also, all information about the amount to take is based on

synthetic vitamin E. So if you are in a situation of having to count

your pennies I don't see any reason to buy 'natural' when it's known

that synthetic works just as well, and (and this is important) if

money is no object and a person chooses to use natural then

modifications in the dose need to be made. Too much vitamin E can

cause blood clotting problems. With synthetics it is already known

that doses of between 400IU and 1200IU daily are safe. A safe dose of

natural is probably about half of what the synthetic is, so if you

are using natural you need to watch the dosing. When ever you see

some info on what amounts to take they are generally talking about

synthetic (although they often don't even state what type they are

talking about) and so someone not aware they need to make

modifications in the dose could find themselves with clotting

problems, especially if they already have low platelets or a

prolonged PT time. I just don't see the need to spend extra when it's

already known that synthetic works fine.

Take care,

Claudine

__________________________________________________

[Guest guest]

Claudine,

Thanks for responding. Actually we're on the same page. It cost me

less to purchase natural because it takes less. Still again it's choice

right? I'm always looking for ways to take less than more due to cost and

the hassles of taking so many things. If I can take one of something that's

what I want...not often what I get though. Again, thank you. Just wanted

to pass on the information. Thank you for all the info. you give us. I

find it very informative. Janie

Re: [ ] Re: Viral load flucuations...

> Hi Janie,

> I understand where you are coming from, and normally I would agree

> with your reasoning that natural is better. And maybe it is. It is

> absorbed better than synthetic. But, all the studies using vitamin E

> in various liver diseases have used the synthetic form and it worked

> great. Also, all information about the amount to take is based on

> synthetic vitamin E. So if you are in a situation of having to count

> your pennies I don't see any reason to buy 'natural' when it's known

> that synthetic works just as well, and (and this is important) if

> money is no object and a person chooses to use natural then

> modifications in the dose need to be made. Too much vitamin E can

> cause blood clotting problems. With synthetics it is already known

> that doses of between 400IU and 1200IU daily are safe. A safe dose of

> natural is probably about half of what the synthetic is, so if you

> are using natural you need to watch the dosing. When ever you see

> some info on what amounts to take they are generally talking about

> synthetic (although they often don't even state what type they are

> talking about) and so someone not aware they need to make

> modifications in the dose could find themselves with clotting

> problems, especially if they already have low platelets or a

> prolonged PT time. I just don't see the need to spend extra when it's

> already known that synthetic works fine.

> Take care,

> Claudine

>

>

> __________________________________________________

>

[Guest guest]

Hey my fellow heppers,

Have any of you heard of any heppers that have been affected with bell's

palsy? I was hit with this glorious affliction a year ago and am still

fighting it. Was wondering if it might be hep c related. Danny

[ ] Re: Viral load flucuations...

> Hi Danny - I don't envy you the child support or the not feeling

> well. I am so fortunate as to have had no apparent symptoms of the

> virus. God has blessed me in that regard. However, I am a small

> business owner. Need I say more? I am also fortunate in that my

> county has a program for us " poor " . I qualify for a clinic card, and

> all my doctor costs, as well as hospital costs are covered. Thank

> God! If I remember correctly, my biopsy cost like $12,000. But I

> still have to pay those " extra " doctors. They get their miniscule

> payments every month. I know what you mean about having someone whose

> shoulder you can " cry " on. We all need that, so we don't feel like

> we're the only one. the closest HepC support group around here is

> about 20 miles away and meets twice a month. I haven't made it yet,

> and I'm thinking about starting a group in my immediate area. Hang in

> there, Danny, remember that stress is a killer too. I know I need

> reminding of that constantly. Love and hugs, Karolyn

>

> > > > > my viral load dropped from ovre 650,000 to 325,000

> > > > > in 6 months just from diet

> > > > > , water vitamins and milk thistle... no meat no

> > > > > grease no fried food no

> > > > > alcohol .. i think the right balance of exercise [

> > > > > even when i feel like crap

> > > > > ] and rest is important.. to much of either one

> > > > > makes me feel worse also i

> > > > > drink whey protein and eat lots of bananas all liver

> > > > > functions are now normal

> > > > > next thing i've got to reduce is stress my weight

> > > > > dropped from 235 to 200

> > > > > and i eat all i want

> > > > >

> > > >

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

I just joined last week. I've been watching your comments, suggestions and data. I was diagnosed with hcv and cirr 6 years ago. I've been trusting my doctor and his treatment all along... but.... He doesn't have faith in vitamins and suppliments and has never recommended them. I think it's time for me to take a much more active role in my treatment. I've been taking milk thistle with 80% silymarin, ester-c, and I'm watching & studying to learn more about the condition. The doctor prescribes spironolactone, previcid, propranolol and lasix. I have had the endoscopy with banding, and once was told that a transplant was in in my very near future, Then the transplant center said I seem to have improved and it would be probably at least 8 years. I feel fine and look fine but I turned 50 2 weeks ago, and I think that jarred me to wake up and take some responsibilty for my treatment. My doctor has done nothing about the hcv, only the liver concerns him. I just wanted to share with you that I'm here, and I'm learning from you, Thanks, in Tx

[Guest guest]

THANKS KAROLYN. YOUR INFORMATION HAS ENCOURAGED ME. WILL YOU KINDLY CLARIFY WHAT IS " ESTERIC-C". AND IS IT EASILY AVAILABLE. ALSO PLEASE LET ME KNOW IF YOU ARE OR HAVE BEEN USING OTHER MEDICINES LIKE SPIRONOLACTONE, PREVACID PROPRONOLOL, LASIX. SOME ONE TOLD ME THAT PREVACID IS BAD FOR LIVER. KINDLY LET US SHARE YOUR VIEWS. DO YOU HAVE ANY INFORMATION ABOUT EFFECT OF HEP'C ON MOUTH AND TONGUE?--SINGH

karolynt47 <karolyn1@...> wrote: Welcome, ! Congratulations to you! It is such a wonderful feeling to take charge of your own body. And we are all so lucky to be in an age when all this information is at our fingertips. For me, I feel that the better I eat and the less toxins (and that includes medications) that I breathe in, apply to or ingest into my body the better my chances are at beating any "invaders." I'm no saint, but compared to how I used to be, I'm on my way! God bless. Karolyn> I just joined last week. I've been watching your comments, > suggestions and data. I was diagnosed with hcv and cirr 6 years > ago. I've been trusting my doctor and his treatment all along... > but.... > He doesn't have faith in vitamins and suppliments and has never > recommended them. I think it's time for me to take a much more > active role in my treatment. I've been taking milk thistle with > 80% silymarin, ester-c, and I'm watching & studying to learn more > about the condition. The doctor prescribes spironolactone, > previcid, propranolol and lasix. I have had the endoscopy with > banding, and once was told that a transplant was in in my very > near future, Then the transplant center said I seem to have > improved and it would be probably at least 8 years. I feel fine > and look fine but I turned 50 2 weeks ago, and I think that jarred > me to wake up and take some responsibilty for my treatment. My > doctor has done nothing about the hcv, only the liver concerns > him. > I just wanted to share with you that I'm here, and I'm learning > from you, Thanks, in Tx

[Guest guest]

--- b s <darshanbs@...> wrote:

> ALSO PLEASE LET ME KNOW IF YOU ARE OR HAVE BEEN USING OTHER

> MEDICINES LIKE SPIRONOLACTONE, PREVACID PROPRONOLOL, LASIX. SOME

> ONE TOLD ME THAT PREVACID IS BAD FOR LIVER.

Prevacid is not bad for your liver. Here is an excellent web site to

look up any info on just about any drug. When you 'click' on the

GENERIC name of the drug you will be able to read all the prescribing

info that would be in a PDR, including any side effects and warnings.

I recommend looking up ALL drugs before you take them.

C

http://www.rxlist.com/

__________________________________________________