Re: low platelets, appointment with specialist to start t...

[Guest guest]

Yes, Alley, There's no doubt that I was getting a strong sales pitch from

this woman. To give her a little credit, I believe her motivation wasn't

from selling but because she is a total convert to this product. But she

did try to tell me it was a food source and when I explained why I couldn't

take iron supplements she just didn't hear me. She did forward me a

response from someone in the comapany that she emailed asking about the

iron. They said it is a synthetic additive and anyone with questions should

follow the advice of their doctor. Then they referred to the " iron

controversy " .

Since I was diagnosed with HCV there are only 2 things my doctors told me

unequivocally not to do: No Alcohol; No iron. I wasn't aware there was any

controversy!

Oh well. There's a 30-day money back quarantee for this supplement. So I

guess I haven't lost anything. )

Pam in Maine

>From: " Shshonee " <shshonee@...>

>Reply-Hepatitis C

><Hepatitis C >

>Subject: Re: low platelets, appointment with specialist

>to start t...

>Date: Fri, 20 Aug 2004 15:45:28 -0500

>

>Yeah, insurance/medicare have their own rules but some do some don't. Riba

>is FDA approved for HCV isn't it? why it's covered?

>

>Anne, if you have mild fibrosis (like stage 0 - 1) AND are geno 1, my

>advice is don't do treatment. Just a personal opinion. I'll support you

>either way.

>

>Yeah, Claudine, hemothingy!

>

>Taking iron with HCV is something that needs to be done with a doctor's

>approval, my opinion. I don't avoid foods with iron, but I don't take any

>supplements with iron. You have to look at where your liver is and what

>you normally eat, etc. There are all kinds of scams to make money off

>people, HCV is no different. Some people will tell you anything just to

>make a buck. Always check with your doc.

>

>Willem you are too funny Yes it IS the weekend! ooooooooooo!

>

>Alley

>

>

[Guest guest]

cable mom <parend53@...> wrote:

They said it is a synthetic additive and anyone with questions should

follow the advice of their doctor. Then they referred to the " iron

controversy " .

Since I was diagnosed with HCV there are only 2 things my doctors told me

unequivocally not to do: No Alcohol; No iron. I wasn't aware there was any

controversy!

There really isn't any controversy about iron in the HCV world. It is generally

accepted that unless there are unusual circumstances you should not take iron

supplements. However, there is a controversy in the " regular " world over iron

supplements. Many people believe that iron should not be supplemented without

documented iron-deficiency, while others feel it's ok. Iron can be very toxic to

ANYONE if taken in too large amounts. Iron is one of the leading causes of

poisening deaths in children. (Those kiddy vitamin/mineral supplements taste

like candy!) On the other hand, we do need some iron! Most people will get

enough from food sources if they eat a well balanced, nutritious diet.

C

[Guest guest]

You are so right...you do have to pick the right time for your battles. And

right now the most important thing is that she gets her procrit.

But when she has finished treatment and the bills start rolling in, then you can

consider contesting the issue. I'd contact the American Cancer Society and ask

for their booklet that lists the various " treatments " used in chemo and their

side effects. Then you will have proof that it is considered chemo when you

decide to load your gun and go a huntin'

Re: low platelets, appointment with specialist to

start t...

I totally agree with you, Tat, but I think you can understand at times you have

to just sit tight and choose the timing of the challenge.

[Guest guest]

I agree with Claudine. Putting iron in supplements has caused more problems

than it's fixed, and that's for non-heppers.

You wanna eat some spinach at dinner, I'd say go for it. How much darn spinach

can one eat anyway? lol Unless you're a spinach addict.

But vitamins. People take those every day. Or like me, sometimes twice a day.

And I don't by my grandkids vitamins with iron. I sneak iron rich foods into

their diet when they aren't looking.

So icksnay on the ironsay!

Alley

[Guest guest]

Tammie, I also tested postive for hep C & B back in 1989, when the test first

became available in Dallas. I had donated blood and thank goodness I had or I

might never have known. I wish now I had not done treatment, even though I

faired very well during treatment, better than 99% who do treatment. However,

the problems treatment left me with weren't nice - fibromyalgia, chronic

fatigue, memory loss, insomnia, depression.

Others I've known have been left with permanent diabetes, thyroid problems,

heart problems, tinnitus, and other things I can't remember right now.

Treatment is a risk. You have to judge whether the risk is worth it. Usually,

it is our only choice, but that is because our liver is failing. If our liver is

in good shape, and we are the stubborn geno 1, esp 1b, then doctors usually

advise waiting a bit, not making a rush decision.

Enjoy your health while you've got it. Because there's no promise that health

will continue after treatment.

Alley

[Guest guest]

HI.Don.t post much lately because I.am cured,according to the avaiable test,but

I like to comment on this on.I.am a long time past TX and one thing has changed

permanently is my behaviour.I get very quickly agitated,edgy,quick tempered.More

then before.I blame it on the TX.Any info on that.?.Willem.

[Guest guest]

In a message dated 8/22/2004 1:42:41 PM Eastern Daylight Time,

lands142@... writes:

HI.Don.t post much lately because I.am cured,according to the avaiable

test,but I like to comment on this on.I.am a long time past TX and one thing has

changed permanently is my behaviour.I get very quickly agitated,edgy,quick

tempered.More then before.I blame it on the TX.Any info on that.?.Willem.

Willem, just because you're cured doesn't mean you have to go away. TX,

particularly with riba does change us. Some diet changes might help that, but

exercise and weeding is what I use. I take my little trowel out and dig in the

dirt. You can always pretend that a clod is somebody's head. Not only does it

disapate anger, it's also productive. Just a thought. Anne

[Guest guest]

If our liver is in good shape, and we are the stubborn geno 1, esp

1b, then doctors usually advise waiting a bit, not making a rush

decision.

My doc didn't advise me to wait at all. He was ready for me to start

the meds. I hope that I didn't make a mistake by doing this, but it

is too late now. I will not back out. I will see this to the end.

I never now about docs. Are they really interested in treating me or

experimenting on me? Who knows, but once again, I am in it for the

long haul.

<><TammieD><>

[Guest guest]

If our liver is in good shape, and we are the stubborn geno 1, esp

1b, then doctors usually advise waiting a bit, not making a rush

decision.

My doc didn't advise me to wait at all. He was ready for me to start

the meds. I hope that I didn't make a mistake by doing this, but it

is too late now. I will not back out. I will see this to the end.

I never now about docs. Are they really interested in treating me or

experimenting on me? Who knows, but once again, I am in it for the

long haul.

<><TammieD><>

[Guest guest]

If our liver is in good shape, and we are the stubborn geno 1, esp

1b, then doctors usually advise waiting a bit, not making a rush

decision.

My doc didn't advise me to wait at all. He was ready for me to start

the meds. I hope that I didn't make a mistake by doing this, but it

is too late now. I will not back out. I will see this to the end.

I never now about docs. Are they really interested in treating me or

experimenting on me? Who knows, but once again, I am in it for the

long haul.

<><TammieD><>

[Guest guest]

If our liver is in good shape, and we are the stubborn geno 1, esp

1b, then doctors usually advise waiting a bit, not making a rush

decision.

My doc didn't advise me to wait at all. He was ready for me to start

the meds. I hope that I didn't make a mistake by doing this, but it

is too late now. I will not back out. I will see this to the end.

I never now about docs. Are they really interested in treating me or

experimenting on me? Who knows, but once again, I am in it for the

long haul.

<><TammieD><>

[Guest guest]

OK I'll retract " most " and say " mine " , who was the head of Baylor Dallas gastro.

He said doing treatment early when there's little damage, low viral load, good

alt/ast, could cause more problems than it solves with geno 1's. Peg fortunately

has had better results, but not much for geno 1's.

I think these docs must be getting a kickback or something. I sometimes wonder

where their head is with this " treatment for everyone " philosophy. Just my

humble lay person's opinion.

I like that post on the genotypes Claudine. Very interesting. Now I understand a

little more why even with high dose interferon, I STILL got the darn thing!

Good luck on your treatment. Drink lots of fluids, esp water. Be sure your doc

will treat the sides too. And take it one day at a time.

Alley

[Guest guest]

OK I'll retract " most " and say " mine " , who was the head of Baylor Dallas gastro.

He said doing treatment early when there's little damage, low viral load, good

alt/ast, could cause more problems than it solves with geno 1's. Peg fortunately

has had better results, but not much for geno 1's.

I think these docs must be getting a kickback or something. I sometimes wonder

where their head is with this " treatment for everyone " philosophy. Just my

humble lay person's opinion.

I like that post on the genotypes Claudine. Very interesting. Now I understand a

little more why even with high dose interferon, I STILL got the darn thing!

Good luck on your treatment. Drink lots of fluids, esp water. Be sure your doc

will treat the sides too. And take it one day at a time.

Alley