New Member

Posted December 9, 2005 · December 9, 2005

Hi, Mike -

wow, it really sounds like you're having a tough time.

Did you get Lactulose to help with your " brain fog " ?

And were you warned that the Ribavirin can really play

havoc with your emotions? We call it the " Riba Rage "

and I sure warned everyone at work that I'd have it.

Boy, I got cranky and practically downright spiteful

on treatment. And do you have rashes, and mouth

sores, aching joints, nausea? I had to go on Zofran,

an anti-nausea drug they usually give to cancer

patients on chemo. Are you taking a protein

supplement? If not, ask your doctor about it, mine

told me a whey-based supplement was easier for liver

patients to digest than meat or egg-based. So I found

some whey-based branched-chain amino acid protein

powder, and that brought my albumin level right up

like nothing else had for years! I also took mens'

vitamins so I wouldn't get iron since that seems to

interfere with the treatment.

So you still have your hair and a sex drive, that

puts you ahead of a lot of people on treatment. How

old are you? How long have you had this? What

treatment are you on, and for how long? Tell us more,

we'd like to know.

I've had HepC since I was 21, got diagnosed in '97 and

have been on a transplant list since then. Thankfully

I'm low on the list and very stable. My doctor says

I'm the healthiest person this sick that she's seen. I

could go on like this for years, I guess. I've done 3

treatments, including the PegIntron and Pegasys,

responded very quickly but relapsed 2 months after the

end of treatment. I also had to take a shot of

something to stimulate red blood cell growth, since I

got really anemic. And toward the end of treatment I'd

get a chest cough and short of breath from the anemia.

But nothing I couldn't whine my way through. Just

waiting for the next step: maybe Infergen, maybe the

newe protease inhibitors, maybe a long-term (4 years

or so) treatment. It

seems like we're all on the forward wave of research,

seems like most HepC people I've known have been on a

trial of some sort.

My motto is " you don't have to be brave, just

stubborn " . Works for me!

Anyway, nice to meet you, hope we can be helpful.

Best wishes,

Michele

--- hope_chem_survive <hope_chem_survive@...>

wrote:

> Hi im mike

>

> 4 months into chemo 3 month test no HCV detectable.

> But like most it

> is taking a toll on my life. on the way to divorce

> wife can't stand

> me with the mood swings i can't stand her

> indefference to what im

> going thru and the way she hassles me for trying to

> rest sometimes.

> too sick to work diarreha comes and goes 3 month old

> lung infection

> unresolved after antibiotics.

>

> taking lots of vitamins and losing weight anemic

> dizzy no memory

> crying and and angry more angry than crying.

> mineral counts in blood

> tests going down even with vitamin supplementation

> at the bottom of

> the normal range now so plan to take more vitamins

> and minerals.

> Taking the Lloyd program but buying most of

> the supplements at

> lower price herb specialty houses. seems to help a

> lot. hard to

> imagine what a bad chemo experience is like assuming

> mine is better

> than average only lost 30 lbs and weight seems to

> have stabalized.

> still have hair and a sex drive that goes to waste

> and too tired

> anyway.

>

> always tired but had chronic fatigue before the

> chemo. hope that my

> brain comes back to normal after treatment but know

> its not a shure

> thing.

>

> amazing that i am really luck and yet leef so lousy

> much of the time.

>

> best wishes too all

>

> mike

>

__________________________________________________

Posted December 10, 2005 · December 10, 2005

Michele,

Thanks for the kind reply. Oh God that must have been awful. To go

thru such a treatment and than rebound. I can't even imagine...

It's a fear I have but think positive. I pray you improve.

I take lots of antiviral and liver protecting and regenerating herbs.

Not at high doses but 6 or seven different ones that are safe and

commonly used to treat hep c. Caution with chinese herbs from china

though cause you don't know what's in them. I get my herbs from the

US.

I started my nutrition program right before treatment and think

that's partly why I had such a dramatic reversal of the liver ALT and

AST. The doctor was amazed and delighted at month 2 when the liver

markers normalized. I did not say why cause thay had already warned

me not to take herbs cause they are not approved by drug company

testing in the US but are in Europe and Asia.

I do a lot of my own research and many of the the things I take

actully improve the chemo sucess rate and reverse liver damage.

Unfortunately many doctors don't keep up with anything not in the

drug company literature.

I take NAC, ALA, E, 4 grams C, men's vitamins no Iron lots of

minerals. Reishi Shitiki? and Mitaki medicinal and food grade

mushrooms. The Chinese have been using them for 4,000 years in their

food. I try to eat more green leafy vegies and bought a juicer not

arrived.

How bad is your liver? Do you get lots of antioxidants to stop the

damage so it can regenerate?

I thought I was ok and had the biopsy of stage 3 fibrosis and looked

at the picture and was totaly speachless. Freaked me out for days.

My age is 48 and 28 years hep c now with stage 3 liver fibrosis and

no cancer. On the standard Peg interferon and high dose 1,200

ribavarin. Weight 175 height 5'10''. This is 30 pound less than when

i became sicker this year but a good weight to be. So the weight

loss was actually healthy and has stopped.

Seeing a shrink and taking prozac and a mood leveler called

lamictal. Taking quinine at my request to help with removing side

effects of fever chills aches and pains.

Quinine is often given in Asia to help reduce chemo side effects and

is also a wide range antiviral and anti cancer drug. Why they don't

use it more here is beyond my knowlege because it eases the joint and

musle pain knocks down the fever and chills and gives you a real

happy warm feeling like painkillers but more natural. The feeling of

wellbeing is a well documented side effect of quinine. It's about

the only frequent side effect.

Yeah warned about depression but no way did I ever imagine yelling

and then crying an hour later. that seems to be gone now.

Nothing from doctor for brain fog told him I can't remember

anything. That's ok I just hope it doesn't get worse so I can still

drive for monthly testing and get my meds. Biggest mental problem is

no short term memory. HUh????

I take whey protiens some but wight loss and appetite trouble seem to

be gone. What a cool doctor you have. Boy your tx sounds worse than

mine except for the divorce.

I could not get my wife in a support group for chemo eventhough she

had time to join the support group for people who don't eat out in

restraunts often enough. I kid you not.... It's called the new

friends in VA Beach group and you make new friends by meeting other

couples in restrants.

As long as she leaves me alone and quits bargging in the bed roomand

waking me up to complain that I sleep too much (only 9 hours in bed a

day).

Gave her the Lloyd book about chemo said read page 20 to 120 a

short story about his 2 chemo treatments and very entertaining. Told

her it would give her insights into what i was going through and help

to understand the tiredness and grumpiness.

She was too busy to read it but has time to surf the internet 1.5

hours a day and read novels. She knows how sick I am and asked me if

I didn't need life insurance. As though the house and my life saving

are not enough for her. Not a good situation for my recovery.

My Dr. is nice but unknowlegable when it comes to nutrition. Says no

need for vitamins and suggests Encare for weight loss which is all

pure fat and pure shugar. For mineral loss he says take gatorade as

though potasium and sugar and salt and magnesium are all the

essential nutrients you neeed.

I really think the dandilion root, milk thistle and licorice help me

a lot. My ALT and AST etc are normal since the second month blood

test. I get tested every month. Never cleared the bacterial lung

infection with antibiotics and now have a new head cold. need to

stay healthy to stay on chemo.

well that's probably more than you asked about.

Best wishes

Mike

-

-- In Hepatitis C , Michele Kiger

<mishkiger@y...> wrote:

>

> Hi, Mike -

>

> wow, it really sounds like you're having a tough time.

> Did you get Lactulose to help with your " brain fog " ?

> And were you warned that the Ribavirin can really play

> havoc with your emotions? We call it the " Riba Rage "

> and I sure warned everyone at work that I'd have it.

> Boy, I got cranky and practically downright spiteful

> on treatment. And do you have rashes, and mouth

> sores, aching joints, nausea? I had to go on Zofran,

> an anti-nausea drug they usually give to cancer

> patients on chemo. Are you taking a protein

> supplement? If not, ask your doctor about it, mine

> told me a whey-based supplement was easier for liver

> patients to digest than meat or egg-based. So I found

> some whey-based branched-chain amino acid protein

> powder, and that brought my albumin level right up

> like nothing else had for years! I also took mens'

> vitamins so I wouldn't get iron since that seems to

> interfere with the treatment.

>

> So you still have your hair and a sex drive, that

> puts you ahead of a lot of people on treatment. How

> old are you? How long have you had this? What

> treatment are you on, and for how long? Tell us more,

> we'd like to know.

>

> I've had HepC since I was 21, got diagnosed in '97 and

> have been on a transplant list since then. Thankfully

> I'm low on the list and very stable. My doctor says

> I'm the healthiest person this sick that she's seen. I

> could go on like this for years, I guess. I've done 3

> treatments, including the PegIntron and Pegasys,

> responded very quickly but relapsed 2 months after the

> end of treatment. I also had to take a shot of

> something to stimulate red blood cell growth, since I

> got really anemic. And toward the end of treatment I'd

> get a chest cough and short of breath from the anemia.

> But nothing I couldn't whine my way through. Just

> waiting for the next step: maybe Infergen, maybe the

> newe protease inhibitors, maybe a long-term (4 years

> or so) treatment. It

> seems like we're all on the forward wave of research,

> seems like most HepC people I've known have been on a

> trial of some sort.

>

> My motto is " you don't have to be brave, just

> stubborn " . Works for me!

>

> Anyway, nice to meet you, hope we can be helpful.

>

> Best wishes,

>

> Michele

>

> --- hope_chem_survive <hope_chem_survive@y...>

> wrote:

>

> > Hi im mike

> >

> > 4 months into chemo 3 month test no HCV detectable.

> > But like most it

> > is taking a toll on my life. on the way to divorce

> > wife can't stand

> > me with the mood swings i can't stand her

> > indefference to what im

> > going thru and the way she hassles me for trying to

> > rest sometimes.

> > too sick to work diarreha comes and goes 3 month old

> > lung infection

> > unresolved after antibiotics.

> >

> > taking lots of vitamins and losing weight anemic

> > dizzy no memory

> > crying and and angry more angry than crying.

> > mineral counts in blood

> > tests going down even with vitamin supplementation

> > at the bottom of

> > the normal range now so plan to take more vitamins

> > and minerals.

> > Taking the Lloyd program but buying most of

> > the supplements at

> > lower price herb specialty houses. seems to help a

> > lot. hard to

> > imagine what a bad chemo experience is like assuming

> > mine is better

> > than average only lost 30 lbs and weight seems to

> > have stabalized.

> > still have hair and a sex drive that goes to waste

> > and too tired

> > anyway.

> >

> > always tired but had chronic fatigue before the

> > chemo. hope that my

> > brain comes back to normal after treatment but know

> > its not a shure

> > thing.

> >

> > amazing that i am really luck and yet leef so lousy

> > much of the time.

> >

> > best wishes too all

> >

> > mike

> >

>

> __________________________________________________

>

Posted December 10, 2005 · December 10, 2005

Wow, Mike,

It sure seems like you've got the nutrient plan down,

not much anyone can tell you. That's so cool! Besides

the protein powder I just try to eat lots of fresh

veges and fruits for the antioxidant and general

nutrients. I usually put the powder in a fruit mix:

milk, fresh berries, limeade, vanilla

yogurt, banana, stuff like that. Oh, fresh ginger and

coconut flakes, too. I LOVE fresh ginger, add it to

tuna salad, etc. I eat a lot of Oriental food since I

was raised for 5 years in Korea. I'm convinced kimchee

is one of the healthiest things to eat.

I'm one of those people who has always had normal

ALT/AST, even as the damage was occuring. So we just

look at the viral load as a indication of how well the

treatment did. This last one, though, brought my

platelets and WBC up, so there was further

confirmation I had what my doctor calls " a biochemical

reaction " to the drug. So it's improved my condition.

Even though I still have a viral load.

I didn't find out about my hepatitis until it was at

end-stage, no where else to go. So that has simplified

my decisions.

I got divorced a year before I got my diagnosis, and 3

years after we knew something was really wrong with

me. My husband complained that I was " No fun anymore "

and was " acting old " . Well, I was looking at things

from the angle of how tired would I get, didn't want

to ski anymore or climb mountains, etc. I was sick!

And I'm actually glad we broke up before the

diagnosis, he would have had a hard time with it

because everything was about him. So he'd have less

money if I didn't work, he (God forbid!) might have to

take care of me and worry. So it was much better for

me to go throught the trauma of divorce before the

trauma of being diagnosed and deciding what to do.

It's just clearer this way, less people to accomodate,

and it's brought me MUCH closer to my two sisters. We

were always close, but this really brought it home.

They both got checked out to see if they could become

living donors (neither of them can), one sister took

me in when I could not work anymore, and the other one

continues to be totally supportive. So that's a really

good thing that's come out of this. We're all making

plans to live on the same piece of property when we

retire, build a house for my little sister who has a

husband and child, and apartments for us two old

maids. So we can spend our declining years together,

and my neice can have two adoring aunties at her beck

and call.

So despite the severity of my disease, I have a lot to

live for and plan to be a fiesty old lady. It's good

to keep those long-term plans in my mind when I get

overwhelmed with the daily stuff.

How much longer is your treatment? I'm glad you can

tolerate such a high dose of Ribavirin - I just

couldn't and that may have something to do with why

mine failed. And OF COURSE I didn't lose any weight on

treatment, I just ate bland, white foods which kept me

fat. No, no, I wouldn't

be so lucky as to lose weight like everybody else

does!

My mom got malaria in Korea and took quinine when she

had a relapse. Hmmm, I never thought of taking that,

just took some anti-inflammatories and piled up the

blankets the first few nights after a shot. Good idea!

I take Lexepro, which is an anti-anxiety as well as an

anti-depressant. I went through a period of real anger

re: losing my husband, my health, my job, and then my

stuff (furniture, belongings which were packed away in

storage) when I moved in with my sister. And she

wasn't used to living with anyone yet, so it was quite

an adjustment. So Lexepro really leveled the mood out

so we could talk about what was bothering me instead

of me yelling and slamming doors.

I took a 6-hour memory testing from a psychologist,

and I suspect what he told me holds true for a lot of

us with HepC. He said my long-term and short-term

memory were both excellent - it was my working memory,

or ability to multi-task, which was nonfuctional. We

confuse that with short-term memory, but there is a

difference. I could remember what he told me, but when

he asked me to work out a story problem, I couldn't

keep one sum in my head while I figured out what

another sum was - that's multi-tasking. Like he asked

me if apples were 1.25 each and I bought 3 and the tax

was .12 per apple, what was the total? I could have

figured it out just fine on paper, but keeping the

sums in my head was not happening. He said we draw

from our long and short-term memory to help, but we

should do things like make a lot of lists, keep

something handy to write down thoughts when we have

them, and be really careful about driving. In fact, I

didin't drive for about a year when I was on

treatment. It's better now, but I still have to be

aware of being vigilant or I'll find myself drifting

over towards the bike lane or something.

OK, it was great to talk to you, I'm 52 by the way and

have had this for 31 years. Thank God it's a slow

virus, huh?

Michele

__________________________________________________

Posted December 10, 2005 · December 10, 2005

Michele,

That's the good and the bad in life. Glad you see the good so

clearly. Sometimes we all focus too much on the bad side. I am

trying to be more appreciative of how good I have it. Enjoying life

more now since my recent bad health was a wake up call.

Check out my fish in the mike album. The mountains are breathtaking.

Thats from right before I got real sick.

I was real sick six months ago before I started doing research and

got the nutrition thing going and then a month later started the TX.

I was so sick I sometimes feel better on chemo than I did dying

slowly with the bad liver and chronic fatigue. ALT and AST were real

high.

Aged about 10 years in the last 3. Most of my hair turned white or

black from blond. Had real itchy skin and always scratching all over

and psoriasis, tired and weak and couldn't bend my ankels. They just

stopped working one day. I could barely walk and was so tired

standing wore me out. All kinds of intestinal problems, bad sleep

problems and progressively worse mental state.

I go nuts from time to time anyway and occassionally need

antipsycotics to keep from hearing voices. That started unusually

late age 36, in life and after I had the hep c for 15 years.

I sometimes wonder if there is some weird connection cause most 35

year olds who are pretty normal don't start to have psycotic

eppisodes. My doctor was convinced something else was causing it

besides the brain and I had cat scans and every test in the world for

a whole week in the hospital but was otherwise perfectly healthy.

Usually when psycosis begins it starts in the teens or early 20's. I

was not taking drugs or drinking or even smoking and lived a pretty

clean life. Quite a mystery.

I suppose you already load up on the dandilion root, milk thistle and

licorice teas and supplements etc. Not much harm it can do and helps

most people with improving liver function and regenerating the

liver. Even helps to reverse chirroses. Not just my opinion but

shown in medical tests in Germany and Japan where it is standard hep

treatment for B & C and chirroses.

Sometimes I think I will miss my wife cause she's so charming. But

having to clean up after her while I'm sick is a bummer. Today I had

a call from the relator that someone was coming this afternoon to see

and maybe buy the house and asked her to help me clean it up.

She said I cleaned up my room which means most of the dirty laundry

is off the floor and left the house with the baby. So I spent 2 or 3

hours cleaning and wound up worn out with a killer headache. I just

can't do much any more but at least feel well enough to function on

my own.

According to my shrink it should be easy for me to get some of my

social security money back for disability. With my way bad mental

state nuts before and really disfunctional now and frequent diarreha

and lung infection anemia, etc etc he says I qualify either

physically or as a nut case. Since he's a shrink he's gonna help me

get social security for being nuts. Says they always turn you down

at first no mater how sick you are but to hire a law firm cause I do

qualify and they will get it for me.

Sometimes, not very often but once in a while, it is good to be

crazy....

I like Ginger too but on a small island would prefer ann if I had

to choose only one.

Mike

>

> Wow, Mike,

> It sure seems like you've got the nutrient plan down,

> not much anyone can tell you. That's so cool! Besides

> the protein powder I just try to eat lots of fresh

> veges and fruits for the antioxidant and general

> nutrients. I usually put the powder in a fruit mix:

> milk, fresh berries, limeade, vanilla

> yogurt, banana, stuff like that. Oh, fresh ginger and

> coconut flakes, too. I LOVE fresh ginger, add it to

> tuna salad, etc. I eat a lot of Oriental food since I

> was raised for 5 years in Korea. I'm convinced kimchee

> is one of the healthiest things to eat.

>

> I'm one of those people who has always had normal

> ALT/AST, even as the damage was occuring. So we just

> look at the viral load as a indication of how well the

> treatment did. This last one, though, brought my

> platelets and WBC up, so there was further

> confirmation I had what my doctor calls " a biochemical

> reaction " to the drug. So it's improved my condition.

> Even though I still have a viral load.

>

> I didn't find out about my hepatitis until it was at

> end-stage, no where else to go. So that has simplified

> my decisions.

>

> I got divorced a year before I got my diagnosis, and 3

> years after we knew something was really wrong with

> me. My husband complained that I was " No fun anymore "

> and was " acting old " . Well, I was looking at things

> from the angle of how tired would I get, didn't want

> to ski anymore or climb mountains, etc. I was sick!

> And I'm actually glad we broke up before the

> diagnosis, he would have had a hard time with it

> because everything was about him. So he'd have less

> money if I didn't work, he (God forbid!) might have to

> take care of me and worry. So it was much better for

> me to go throught the trauma of divorce before the

> trauma of being diagnosed and deciding what to do.

> It's just clearer this way, less people to accomodate,

> and it's brought me MUCH closer to my two sisters. We

> were always close, but this really brought it home.

> They both got checked out to see if they could become

> living donors (neither of them can), one sister took

> me in when I could not work anymore, and the other one

> continues to be totally supportive. So that's a really

> good thing that's come out of this. We're all making

> plans to live on the same piece of property when we

> retire, build a house for my little sister who has a

> husband and child, and apartments for us two old

> maids. So we can spend our declining years together,

> and my neice can have two adoring aunties at her beck

> and call.

>

> So despite the severity of my disease, I have a lot to

> live for and plan to be a fiesty old lady. It's good

> to keep those long-term plans in my mind when I get

> overwhelmed with the daily stuff.

>

> How much longer is your treatment? I'm glad you can

> tolerate such a high dose of Ribavirin - I just

> couldn't and that may have something to do with why

> mine failed. And OF COURSE I didn't lose any weight on

> treatment, I just ate bland, white foods which kept me

> fat. No, no, I wouldn't

> be so lucky as to lose weight like everybody else

> does!

>

> My mom got malaria in Korea and took quinine when she

> had a relapse. Hmmm, I never thought of taking that,

> just took some anti-inflammatories and piled up the

> blankets the first few nights after a shot. Good idea!

>

> I take Lexepro, which is an anti-anxiety as well as an

> anti-depressant. I went through a period of real anger

> re: losing my husband, my health, my job, and then my

> stuff (furniture, belongings which were packed away in

> storage) when I moved in with my sister. And she

> wasn't used to living with anyone yet, so it was quite

> an adjustment. So Lexepro really leveled the mood out

> so we could talk about what was bothering me instead

> of me yelling and slamming doors.

>

> I took a 6-hour memory testing from a psychologist,

> and I suspect what he told me holds true for a lot of

> us with HepC. He said my long-term and short-term

> memory were both excellent - it was my working memory,

> or ability to multi-task, which was nonfuctional. We

> confuse that with short-term memory, but there is a

> difference. I could remember what he told me, but when

> he asked me to work out a story problem, I couldn't

> keep one sum in my head while I figured out what

> another sum was - that's multi-tasking. Like he asked

> me if apples were 1.25 each and I bought 3 and the tax

> was .12 per apple, what was the total? I could have

> figured it out just fine on paper, but keeping the

> sums in my head was not happening. He said we draw

> from our long and short-term memory to help, but we

> should do things like make a lot of lists, keep

> something handy to write down thoughts when we have

> them, and be really careful about driving. In fact, I

> didin't drive for about a year when I was on

> treatment. It's better now, but I still have to be

> aware of being vigilant or I'll find myself drifting

> over towards the bike lane or something.

>

> OK, it was great to talk to you, I'm 52 by the way and

> have had this for 31 years. Thank God it's a slow

> virus, huh?

>

> Michele

>

> __________________________________________________

>

Posted December 10, 2005 · December 10, 2005

Mike,

Oh you're funny, I'd choose ann too, that's my

sister's name and the role was more earthy than

Ginger's. I thought the professor was kinda cute,

though, too.

You know, I did not have one bit of trouble getting

Social Security - everyone told me it would take 3

times of applying and a lawyer to get it. But I guess

being on the transplant list helped, and when I talked

to the doctor, I told him it was killing me having to

stop working. Which was true, I loved my job and was

not ready to leave, even though I was not doing too

well at it.

Maybe it wouldn't hurt for you to get a consult with a

transplant doctor. For one thing, they have much more

experience with end-stage disease and thus are able to

keep people either off the list or relatively low on

it. Plus it would look good on your application for

SS, even if they don't put you on the list. Whoever

you see can make a recommendation to come back for

re-evaluation and that will make SS take it more

seriously.

I think that's a brilliant idea, sometimes I just

impress the hell out of myself! But seriously, I

found SS people to be really helpful and indeed more

so than the state disability people. It was a breeze

for me, so maybe it won't be so tough for you.

Part of it was that I put on the application all the

things I used to do and don't any more, like skiing,

hiking, swimming, painting, I said I don't even put on

makeup or wear my contacts anymore, grooming takes too

much energy. I think they want to hear how much you

don't do any more. I got a disability tag for my car,

too, because I get tired walking very far, and I don't

see why you can't get that.

You know, a lot of your symptoms could go under the

HepC disease process. They used to say that it didn't

effect the brain, but newer studies are showing that

it does. So maybe your psychosis did have something to

do with the virus. I can dig around and see if I can

find any stored articles, if you want.

You know, after my divorce, I didn't date for a couple

of years, but now I've been with the same woman for

about 6 years on and off. I met her through her

girlfriend who was a patient at my hospital and died

waiting for a transplant, and she had HepC also. She

went through a really brutal experimental trial of

drugs for 12 months, and at 6 months still had not

cleared the virus, so I urged her to quit but she

didn't and lo and behold, she's been clear for 3 years

now! There is something sooo nice about being with

someone who knows what you are talking about when you

complain, who's been through the same thing, if not

worse. I also went to a support group twice a month,

and a bunch of us went through treatment at the same

time, and got to whine to eachother, which was very

helpful.

I wish every single Hepdoc had to take 6 months of the

treatment, just to get an idea of what they are

asking of their patients. Hah! Won't every happen. . .

Michele

__________________________________________________

Posted December 11, 2005 · December 11, 2005

Michele,

Yes Ginger is way too high maintinance. Glad you have someone nice

in your life. I have family nearby a beautiful 20 month old and

friends.

Thanks for offering to check on Hep c and going nuts. It was just so

puzzling to my shrink at the time. It was puzzling to me too. I

never saw that Hep C connection but did not research it.

Quite strange to all of a suden start hearing voices. At first I

thought that angels were talking to me. No kidding. Then that I was

psycic and tuning in to the psycic friends network directly with no

phone needed.

Most times I can pass for sane what ever that is.... I also have

sleep trouble that results in sleep deprevation. I treat it now and

the bad psycosis does not occur. Slepp deprevation has been shown to

cause psycosis with very long lasting effects. Just don't know what

caused the trouble probably many factors.

My liver stage is only stage 3 so I am still far from needing a

transplant and hope to reverse the damage fully.

You didn't say anyting about your liver. There's that doctor in

Germany B something with the most impressive credentials I ever saw

who gets people on the transplant list who are too sick to function

and treats with ALA, Selenium, Milk Thistle, C, B complex and

multivitamins and returns them to health. He refers to it as the

Conservative Treatment. They do almost the same thing in Asia.

I take lots of milk thistle tea and supplements. There probably is

no dose so high of that that it hurts you.

Mike

>

> Mike,

>

> Oh you're funny, I'd choose ann too, that's my

> sister's name and the role was more earthy than

> Ginger's. I thought the professor was kinda cute,

> though, too.

>

> You know, I did not have one bit of trouble getting

> Social Security - everyone told me it would take 3

> times of applying and a lawyer to get it. But I guess

> being on the transplant list helped, and when I talked

> to the doctor, I told him it was killing me having to

> stop working. Which was true, I loved my job and was

> not ready to leave, even though I was not doing too

> well at it.

>

> Maybe it wouldn't hurt for you to get a consult with a

> transplant doctor. For one thing, they have much more

> experience with end-stage disease and thus are able to

> keep people either off the list or relatively low on

> it. Plus it would look good on your application for

> SS, even if they don't put you on the list. Whoever

> you see can make a recommendation to come back for

> re-evaluation and that will make SS take it more

> seriously.

>

> I think that's a brilliant idea, sometimes I just

> impress the hell out of myself! But seriously, I

> found SS people to be really helpful and indeed more

> so than the state disability people. It was a breeze

> for me, so maybe it won't be so tough for you.

>

> Part of it was that I put on the application all the

> things I used to do and don't any more, like skiing,

> hiking, swimming, painting, I said I don't even put on

> makeup or wear my contacts anymore, grooming takes too

> much energy. I think they want to hear how much you

> don't do any more. I got a disability tag for my car,

> too, because I get tired walking very far, and I don't

> see why you can't get that.

>

> You know, a lot of your symptoms could go under the

> HepC disease process. They used to say that it didn't

> effect the brain, but newer studies are showing that

> it does. So maybe your psychosis did have something to

> do with the virus. I can dig around and see if I can

> find any stored articles, if you want.

>

> You know, after my divorce, I didn't date for a couple

> of years, but now I've been with the same woman for

> about 6 years on and off. I met her through her

> girlfriend who was a patient at my hospital and died

> waiting for a transplant, and she had HepC also. She

> went through a really brutal experimental trial of

> drugs for 12 months, and at 6 months still had not

> cleared the virus, so I urged her to quit but she

> didn't and lo and behold, she's been clear for 3 years

> now! There is something sooo nice about being with

> someone who knows what you are talking about when you

> complain, who's been through the same thing, if not

> worse. I also went to a support group twice a month,

> and a bunch of us went through treatment at the same

> time, and got to whine to eachother, which was very

> helpful.

>

> I wish every single Hepdoc had to take 6 months of the

> treatment, just to get an idea of what they are

> asking of their patients. Hah! Won't every happen. . .

>

> Michele

>

> __________________________________________________

>

Posted December 20, 2005 · December 20, 2005

Hey There Katy,

First of all, congrats for passing the PTCB!!!!

Thanks to Jeanetta, Dora, and all the other folks who contribute to

this Group, here you will find a wealth of knowlege and experience

that can be found nowhere else on the Internet.

Trust me, I've looked, and most of what you will find will be

a 'teaser' website with a link that somewhere you will have to put

in your credit card number.

Stay here and talk about your experiences as a working CPhT!

Best Wishes,

Christian B. Oliver RCPhT (TX)

>

> Hi! My name is Katy and I just joined this group because I just

> recently took the PTCB test but I thought I failed. Turns out I

passed

> after just checking the website. So far I've just been checking

the

> email posts and I like this group so far so I think I will stay on

for

> awhile. Thanks, Katy

>

Posted December 21, 2005 · December 21, 2005

Hi Katy and congratulations!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

CPhT

Posted January 10, 2006 · January 10, 2006

Hello,

I always get frustrated with people who don't know me or

anything about me but want to give me advice off the top of their

heads especially when it is not asked for. I am definitely giving

advice off the top of my head and doing the same thing I guess. I

have been using bentonite clay mixed with physillum husks. I've

heard that clay is what they used in Russia to treat people exposed

to radiation when they had their accident at a nuclear reactor. I

have been using a product from the health food store by Sonne.

However, I have heard of a product that is supposed to be superior

and have purchased some although not used it yet. It is a clay

powder. From what I'm told it carries a negative charge to it and so

it is also an anti-oxidant. It is from a website

called, " naturesbodybeautiful " . Detoxing is probably going to be

what works for you. In my experience detox pads work good, even

better in some ways than a sauna. Look under foot detox pads on

google. There are some out there for a dollar a pad that are just as

good, imo, as the more expensive ones. If you need I can look up the

exact website where I got them. Welcome.

>

> Hello group,

>

> Just joining...makes me the newbie. I am suffering from Fluorosis,

exposure to flluoric acid in

> a coal mine and now suffer from Fluorosis....the chemical, a

colourless oderless gas causes

> radiation sickness. It is in my bones. It is a type of

electromagnectic sickness. Fluoric Acid is

> the spark that starts electricity from the burning of fossil fuel:

coal.

>

> Thought I would join the group to see about tips and tricks and

such things....to help me out

> a bit.

>

> Thanks.

>

> Warmly,

>

Posted January 10, 2006 · January 10, 2006

Well don't worry about frustrating me! In the spirit of collaboration I joined

the board and

it is implied and welcomed so don't be fretting a thing.

Thank you for the advice. I have tried just about everything...except those

things I don't

know yet. Unfortunately, I have severe skin shedding on my feet accompanied by

calcium

burns. The bones in my feet spur and come through the skin so those foot patches

would

not be a good choice.

I did consider them though.....no where to stick them. I gently remind myself

that when

my feet are finished shedding and healed....I will be resoled.

I am very interested in this clay. Could you provide a web site address?

Thanks for the welcome...AND.....the well intentioned and kind advice.

> >

> > Hello group,

> >

> > Just joining...makes me the newbie. I am suffering from Fluorosis,

> exposure to flluoric acid in

> > a coal mine and now suffer from Fluorosis....the chemical, a

> colourless oderless gas causes

> > radiation sickness. It is in my bones. It is a type of

> electromagnectic sickness. Fluoric Acid is

> > the spark that starts electricity from the burning of fossil fuel:

> coal.

> >

> > Thought I would join the group to see about tips and tricks and

> such things....to help me out

> > a bit.

> >

> > Thanks.

> >

> > Warmly,

> >

>

Posted January 10, 2006 · January 10, 2006

Hi, Jane. You just did!!

Carol

co-moderator

>

> Hi, I am trying to send an e-mail to the group, but I can't seem to

send one? Thanks, Jane

>

Posted January 11, 2006 · January 11, 2006

Karin,

I have sent you a wonderful Comboguide that saved my

life during treatment: I printed it off and put it in

a binder, and handed it on when I was done with it.

Get back to me if it doesn't come through OK. You'll

do fine if you are assertive about your side effects

and report them promptly to your nurse or doctor. I

had a wonderful, sympathetic nurse who responded right

away. I ended up on the Combo Treatment, Procrit for

anemia, Ambien for sleeping, Lexapro for anxiety and

the Riba Rage, Zofran for the nausea, Claritin for

allergic reactions,Protonix for my stomach, 2

diuretcis for edema, and Lactulose for the Brain Fog.

I couldn't get anything than helped my hair loss, but

I have tons of hair and nobody hardly noticed. I did

try the shampoo mentioned in the book, but it didn't

seem to make any difference.

You will have side effects, but it depends on your

body which ones you get and how badly you get them.

The first night, make sure you have some extra

blankets available - I always got fever and chills

just the first night. And I did feel fatigue the whole

time. I think those two are pretty universal. But the

rest changes from person to person. My girlfriend got

terrible hip pain to the point where she was crying,

but I've never had joint pain. I noticed everything

seemed to taste mettalic and I just wanted to eat

bland white food like potatoes, pasta, rice, pudding,

stuff like that.

What will make a real difference in making all this

better is drinking TONS of water to support your

kidneys and liver, and resting enough. And keep in

touch with you, we'll walk you through the treatment.

I'm kindof an expert now - I have been through 3

treatments totalling 39 months, responded quickly each

time, and relapsed just as quickly after treatment

ended. That is not a frequent response, I think the

chances are that you will do well. Remember, you don't

have to be brave,

just stubborn, OK?

Michele

--- karin_steinie <karin_steinie@...> wrote:

> hi everyone

>

> i'm about to go on a clinical trial with double dose

> interferon and riba for the

> 1st 3 months, then normal dose after that. i'm

> occilating between feeling

> positive that it's the right thing to do and then

> freaking out when i read about

> side effects, esp. the hand being eaten away by

> strep one that i've just read.

>

> i guess basically my question is, have you all

> experienced nasty nasty side

> effects and how have you coped? is staying postive

> just denial or am i in for a

> truly rough ride.

>

> i'm fairly symptomless, i've elavated ast's but

> thats about it, the reason i'm

> starting the drug program is that my recent ultra

> sound showed, for the first

> time, liver 'coursening' which apparently is the

> first stages of liver disease.

>

> i always thought i could keep the dragon at bay by

> eating right food and

> laying off the alcohol and staying healthy so it was

> a shock to see that, nope,

> the virus was still active. i have type 1a

> apparently the efficacy of the treatment

> is like 50%. i'm interested in your stories.

>

> best wishes

>

> karin

>

__________________________________________________

Posted January 11, 2006 · January 11, 2006

Jane the first message is modderated.then we release you to full

posting.Sometimes the moderators miss releasing the member. I fix it if I catch

it.

IN NC

Jane Hyde <gizmopippy@...> wrote:

Hi, I am trying to send an e-mail to the group, but I can't seem to send one?

Thanks, Jane

---------------------------------

Photos

Got holiday prints? See all the ways to get quality prints in your hands ASAP.

Posted January 11, 2006 · January 11, 2006

Hi Carol, I am a new member, I would like to purchase VCO, where can I do that?

Thanks, Jane

" Carol C. " <carolsea@...> wrote: Hi, Jane. You just did!!

Carol

co-moderator

>

> Hi, I am trying to send an e-mail to the group, but I can't seem to

send one? Thanks, Jane

>

Posted January 11, 2006 · January 11, 2006

-

naturesbodybeautiful.com

-- In , " tayloka_40 " <tayloka_40@y...> wrote:

>

> I am very interested in this clay. Could you provide a web site

address?

>

> >

> > >

> > > Hello group,

> > >

> > > Just joining...makes me the newbie. I am suffering from

Fluorosis,

> > exposure to flluoric acid in

> > > a coal mine and now suffer from Fluorosis....the chemical, a

> > colourless oderless gas causes

> > > radiation sickness. It is in my bones. It is a type of

> > electromagnectic sickness. Fluoric Acid is

> > > the spark that starts electricity from the burning of fossil

fuel:

> > coal.

> > >

> > > Thought I would join the group to see about tips and tricks and

> > such things....to help me out

> > > a bit.

> > >

> > > Thanks.

> > >

> > > Warmly,

> > >

> >

>

Posted January 11, 2006 · January 11, 2006

hi everyone

thank you for you thoughtful replies. i'm in sydney, australia so you must be

sleeping (or not??) while i'm typing this.

yeh, i'm worried about the double dosage of interferon too. i am very sensitive

to medication, i can't even drink tea because the caffeine sends me a little

loopy.

what's this 3 month new drug trial that you're talking about? that immediately

makes me feel that if possible i'd wait for that. do you have any more info

about it?

anyway i'd better run as i have to take my little boy swimming.

chat soon

karin

>

> ,if you make that 3 months it will be the toughest 3 months you have

ever done most people complain about the normal dose and the problens it

creates ribavirin is known for bone marrow surpression at normal doses

dropping red cells and whites not to mention the painful sides and the

interferon on top of it ,im a tough guy and 18 months tx, but i know i could not

make a double dose for 3 months i bet you drop out in the 1 month if not week

unless you are one of the very few that dosent suffer bad sides and i was one

who did not suffer bad sides but i tried 30% over standard dose and found it

impossible to cope with. I wonder what doc thought this study, up like i said

30% over was near impossible even for a week for me the interferon would

have me so sick after i took it i would hang over the bed and mone for hours

thinking you fool and i really knew better ,their are are other practicle

studies

out their like the vx950 ,3 months and done, boy would i have liked to try that

> befor my 18 month ride and i dont know many who can do the 18 monther

at normal dose

>

Posted January 11, 2006 · January 11, 2006

Karin,

I wanted to add that a couple of people have gone

blind on the treatment, and my vision not only

changed, but my teeth got really brittle. I've had to

have dental work (which we all just love, don't we?)

since treatment stopped, and had to get new glasses.

It might be interesting to get ahold of the insert

that comes with the Interferon, read through the side

effects. The chances are not large for severe side

effects like Mike talks about, but they do happen . A

double dose might double your side effects.

Some of the new research that's coming out is more

focused on adding drugs to the mix, not upping the

dose.

In my experience docs tend to downplay the side

effects. Well, I'd sure like them to be on it for 6

months and see what they say then! I have been lucky,

I had a very sympathetic transplant coordinator who

was assigned to me and helped keep the side effects to

a minimum, as much as possible.

Beware how much of your MD's suggestion is for his own

research and how much is focused on helping you.

Unfortunately some doctors are more interested in what

they can learn (which helps us all in the end so it's

not bad in itself) than in the interest of the

patient. Just keep that in mind. . .

And if I were you I'd have someone stay with me the

first night, I've never heard of anyone going into a

coma, but you may get a fever and chills, and it's

nice to have someone there to keep an eye on you, make

some hot tea or something if you can't get warm. . .

I got pretty much all the side effects, but then I

have end-stage cirrhosis so I was more likely to. I

HATED treatment with all my heart, but I would have

hurt anyone who tried to stop it. I relapsed after all

three treatments, so I'm looking at Infergen or maybe

a low-dose maintenance therapy for 4 years. Gee, I'm

sure not eager for it, but I figured I've lived

through it 3 times already, I can do it again.

So can you, just don't be shy about yelling for help.

Remember, don't be brave, be stubborn!

Michele

__________________________________________________

Posted January 12, 2006 · January 12, 2006

hi everyone

i had no idea really of the possible side effects of double dose. it was

essentially presented to me as 'double the dose, double the chance of

success'. all i can think about is wanting to clear the virus. like i've had it

for 20

years and i'm just sick of having it in my blood. but also... i am healthy now

and so that was why my doc says to go on the trial, they're very keen for

'healthy' hepc people to join.... lessens the sidies i guess.

anyway the new drug... v.... what was it again??? oh no brain fog... already!!

sounds very very interesting...

this list has already given me way more info and ideas than the nurses and

docs have.

thanx.

karin

> >

> > hi everyone

> >

> > i'm about to go on a clinical trial with double dose interferon and

> riba for the

> > 1st 3 months, then normal dose after that. i'm occilating between

> feeling

> > positive that it's the right thing to do and then freaking out when

> i read about

> > side effects, esp. the hand being eaten away by strep one that i've

> just read.

> >

> > i guess basically my question is, have you all experienced nasty

> nasty side

> > effects and how have you coped? is staying postive just denial or

> am i in for a

> > truly rough ride.

> >

> > i'm fairly symptomless, i've elavated ast's but thats about it, the

> reason i'm

> > starting the drug program is that my recent ultra sound showed, for

> the first

> > time, liver 'coursening' which apparently is the first stages of

> liver disease.

> >

> > i always thought i could keep the dragon at bay by eating right

> food and

> > laying off the alcohol and staying healthy so it was a shock to see

> that, nope,

> > the virus was still active. i have type 1a apparently the efficacy

> of the treatment

> > is like 50%. i'm interested in your stories.

> >

> > best wishes

> >

> > karin

> >

>

Posted January 15, 2006 · January 15, 2006

Wow, sorry to hear your predicament.

Just curious, was this a work related thing? Hope you get some

compensation.

I've not found anything I can recall to help get flouride out of your

bones. They seem to say once it's there, it's there.... however, if

all your cells have turned over in a 7 year period, I have to believe

there is a way to get it out.

I've not seen it listed as removable in chelation, but that doesn't

mean it isn't.

I hate to think what my bones look like. We were given Poly Vi-Flor

(flouridated vitamins) till I was 10. Ya know, to help our teeth.

My teeth are falling apart now. A retired pharmacist turned natural,

said that is happening to the teeth and bones of the kids who took

that for years.

I do believe if you keep looking, there is treatment, maybe even in

electric acupuncture?

Your feet, I remember reading something once upon a time that helped

for that...

How about coating them with organic coconut or palm oil, or some

Omega 3 rich one like borage? They can be healing. Sometimes you

have to go my intuition on picking, just what you " feel " , because

sometimes it really is a strong almost tactile feeling, of what one

to try.

I don't how long ago it happened, but it may still be worth a try to

absorb some excess radiation, -a bleach bath, yes plain old clorox

they use. You'd have to do a search for the proportion to water, and

soak time. Not sure where my recipe is. They use it in hospitals,

got it from an RN. Too many years after my xray exposure though.

There's also another bath, I thing it was just epsom salts and baking

soda added? -That might be too drying for your feet, keep 'em up.

Last for radiation I can say is the herb " rhodiola rosea " . It also

helps energy by ?production of NADH, that gets down on the cell level

with your mitochondria and all, radiation damage. A lot cheaper than

the NADH tablets, and probably other benefits too.

Anyhow, welcome, and give us any tips you find too.

~ Snoshoe

>

> Hello group,

>

> Just joining...makes me the newbie. I am suffering from Fluorosis,

exposure to flluoric acid in

> a coal mine and now suffer from Fluorosis....the chemical, a

colourless oderless gas causes

> radiation sickness. It is in my bones. It is a type of

electromagnectic sickness. Fluoric Acid is

> the spark that starts electricity from the burning of fossil fuel:

coal.

>

> Thought I would join the group to see about tips and tricks and

such things....to help me out

> a bit.

>

> Thanks.

>

> Warmly,

>

Posted January 15, 2006 · January 15, 2006

Hi,

You have to believe there is a way out always, myself i could have easily

taken a diagnosis for an incurable condition. Only i do not believe in

conditions (and he didnt dare), Love is unconditional.

remember reading somewhere (and posting here) that tamarind helps get fluor

out of the system. If anything those samosa sauses are delicious; it is in a lot

of currie pastes as well as the juice, could give it a try..

Love

--------------------------------------------------------------

I've not found anything I can recall to help get flouride out of your

bones. They seem to say once it's there, it's there.... however, if

all your cells have turned over in a 7 year period, I have to believe

there is a way to get it out.

Posted January 15, 2006 · January 15, 2006

Hi, Snoshoe,

Thanks for the info re rhodiola rosea! I have been using negative ion water

to meet my need for NADH because the pills are so expensive. I will try that.

The water is helping tho--I am down from 20 mg pills/day to 5mg and 10mg on

alternate days with the water making up the difference. I am still lowering the

NADH pills but I have to do it slowly or I crash.

Thanks again,

Diane

snoshoe_2 <nonengbunny@...> wrote: