Doctor visit

[Guest guest]

Hi Ann

I had a similar experience a couple of years ago (but I

paid,even though I couldn't really aford it at the time) I saw a

rhumetologist for my Lupus and he even had it in his notes from my

doctor that I was not prepared to take the drugs. His words exactly

were " Well if you are not prepared to help your self there is nothing I

can do for you " . I always felt intimidated by doctors and specialists

then,but if it were to happen to me today I would have given it to him

and walked out without paying. I don't know why they feel that they are

higher than God but they do.

That is why I have chosen my GP to send me for tests, for

the moment I don't need and endo when my GP can test me and the

homeopath can treat me. I think you should write a letter of complaint

it seems to me you were treated rudely and that is not what doctors are

for, they are there to offer us treatment and help in our healing(the

opposite to what you experienced). I wish you luck in finding another,

I am sure there are people in this group that live around your area so

perhaps you will receive some advice from them.

All the best

Ali

[Guest guest]

Cheryl, I am sorry to hear that your response to meds isn't what was hoped.

It must be disappointing beyond words. Sounds like the course to up them is

the right choice, lets hope it is effective. Also, sounds like your Dr has

your best interest in mind, and is exploring other possiblities. That is a

good thing, knowing what you are up against can only do a you good. Wow, a

6 hour ride for a 30 min appt does suck, but, at least the Dr is attentive.

April

[ ] doctor visit

> Hi All,

> I went to the dr. today. I'm going to have an ERCP done on March

> 22. I'm not responding well enough to the meds, so he is going to check

> for Primary Sclerosing Cholangitis (PSC). I do have many of those

> symptoms. If that is negative, then he's upping my dose of Pred. to 40.

> He also is concerned with the nausea I've been experiencing--could be

> pancreatitis. He'll check that on my next blood test. Anyway, it was an

> OK visit. There was some guy yelling out in the hall about how valuable

> his time was since he makes $180 an hour. So I didn't get to ask him

> about the case of cirrhosis that he had that reversed. He did take care

> of all my personal concerns. I am not looking forward to the ERCP. I've

> had it done twice before years ago after my gall bladder was out, so I

> know what it's like. I had a bad reaction to the meds they gave me and

> got really sick. Well, I'm tired after 6 hours travelling in the car. I

> did see my sister. She's doing OK. Though she is really puffy and her

> fingernails are gross--oozing pus--yuck. Pray for her to go into

> remission. Talk to ya'll later. Cheryl ID

>

>

>

[Guest guest]

Liz,

Here's a little bit of information about Hashimoto's. I hope your ANA

tests come back okay because I have Hashimoto's and having

Hashimoto's, to me, is worse then being a " typical hypo. "

Hashimoto's disease is by far and away the most common cause of

hypothyroidism, accounting for more than 90 percent of all cases.

Since hypothyroidism is so common, Hashimoto's is also a very common

disorder. It is more regularly diagnosed now since sensitive tests

have been developed, but it was causing hypothyroidism 50 years ago,

only no one recognized it.

Both Hashimoto's and Grave's are autoimmune diseases, meaning that

they are caused by an inappropriate attack of the body's immune system

against the thyroid gland. The nature of the immune attack determines

whether the result will be the stimulation of too much hormone leading

to Grave's disease, or the eventual destruction of the gland by

Hashimoto's, leading to hypothyroidism. Complicating the issue is that

both can sometimes occur together in the same person at the same time.

As with all autoimmune diseases, Hashimoto's is more common in women

than men, tends to run strongly in families, and is associated with

family cases of other autoimmune diseases such as rheumatoid

arthritis, lupus, pernicious anemia, and type I diabetes.

If you do end up having Hashimoto's, I'd suggest finding a good

rheumatologist. I have one and am finally getting a treatment that's

working for me. The rheumie will more then likely do a CBC (checking

the WBC) and an ESR (shows how much, if any, inflammation is in the

body).

Good luck,

Debbie

> Hi Friends,

>

> Today I went to the doc. She told me that it isn't necessary to have

the

> Nuclear Thyroid test done-YEA!!! She told me that what I have is

very

> common. She wants me to go on one of the thyroid meds, but 1st she

took a

> blood test to check for Hashimoto disease.

>

> What is Hashimoto disease? I read a little about it, but what I read

was

> rather vague.

>

> Thanks!!!!!

> Liz

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

[Guest guest]

Thanks Debbie!!!!! I appreciate the info. What do they do for

Hashimoto's? When you had the original thyroid blood tests done, how were

they? So far all of my blood work came out normal. I won't know the

results of the Hashimoto test probably until after Christmas.

Thanks!!!!!!

Liz

------

Liz,

Here's a little bit of information about Hashimoto's. I hope your ANA

tests come back okay because I have Hashimoto's and having

Hashimoto's, to me, is worse then being a " typical hypo. "

Hashimoto's disease is by far and away the most common cause of

hypothyroidism, accounting for more than 90 percent of all cases.

Since hypothyroidism is so common, Hashimoto's is also a very common

disorder. It is more regularly diagnosed now since sensitive tests

have been developed, but it was causing hypothyroidism 50 years ago,

only no one recognized it.

Both Hashimoto's and Grave's are autoimmune diseases, meaning that

they are caused by an inappropriate attack of the body's immune system

against the thyroid gland. The nature of the immune attack determines

whether the result will be the stimulation of too much hormone leading

to Grave's disease, or the eventual destruction of the gland by

Hashimoto's, leading to hypothyroidism. Complicating the issue is that

both can sometimes occur together in the same person at the same time.

As with all autoimmune diseases, Hashimoto's is more common in women

than men, tends to run strongly in families, and is associated with

family cases of other autoimmune diseases such as rheumatoid

arthritis, lupus, pernicious anemia, and type I diabetes.

If you do end up having Hashimoto's, I'd suggest finding a good

rheumatologist. I have one and am finally getting a treatment that's

working for me. The rheumie will more then likely do a CBC (checking

the WBC) and an ESR (shows how much, if any, inflammation is in the

body).

Good luck,

Debbie

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Liz,

Sorry to say that it depends on the doctor and from what I've read in

these support groups, this one, and another in specifically

geared to people with HM, most are being treated for

hypothyroidism. My rheumatologist is treating me with a drug that's

mainly been used to treat rheumatoid arthritis, so far so good. As

for my test results, that's the tricky part about having HM. I went

once and all my tests came back normal. Went two weeks later and they

were completely different. My first TSH was low, my second was high.

My ESR was high both times as was my WBC count. The tests fluctuate

so often that I think this is an initial clue also that you may have

HM and some doctors don't know enough about it to diagnose properly,

and give you the " everything looks normal " quote. I won't know until

after the 21st how my last set of tests came out.

Take care,

Debbie

> Thanks Debbie!!!!! I appreciate the info. What do they do for

> Hashimoto's? When you had the original thyroid blood tests done, how

were

> they? So far all of my blood work came out normal. I won't know the

> results of the Hashimoto test probably until after Christmas.

>

> Thanks!!!!!!

> Liz

> ------

>

>

> Liz,

> Here's a little bit of information about Hashimoto's. I hope your

ANA

> tests come back okay because I have Hashimoto's and having

> Hashimoto's, to me, is worse then being a " typical hypo. "

>

> Hashimoto's disease is by far and away the most common cause of

> hypothyroidism, accounting for more than 90 percent of all cases.

> Since hypothyroidism is so common, Hashimoto's is also a very common

> disorder. It is more regularly diagnosed now since sensitive tests

> have been developed, but it was causing hypothyroidism 50 years ago,

> only no one recognized it.

>

> Both Hashimoto's and Grave's are autoimmune diseases, meaning that

> they are caused by an inappropriate attack of the body's immune

system

> against the thyroid gland. The nature of the immune attack

determines

> whether the result will be the stimulation of too much hormone

leading

> to Grave's disease, or the eventual destruction of the gland by

> Hashimoto's, leading to hypothyroidism. Complicating the issue is

that

> both can sometimes occur together in the same person at the same

time.

>

> As with all autoimmune diseases, Hashimoto's is more common in women

> than men, tends to run strongly in families, and is associated with

> family cases of other autoimmune diseases such as rheumatoid

> arthritis, lupus, pernicious anemia, and type I diabetes.

>

> If you do end up having Hashimoto's, I'd suggest finding a good

> rheumatologist. I have one and am finally getting a treatment

that's

> working for me. The rheumie will more then likely do a CBC

(checking

> the WBC) and an ESR (shows how much, if any, inflammation is in the

> body).

>

> Good luck,

> Debbie

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

[Guest guest]

One thing I forgot in my last post: the doctor also said they would check my blood every week for the first month I was on treatment, then once a month, and then do another biopsy once I had been on treatment 3 - 6 months. Is this normal?

Marilyn

[Guest guest]

Marilyn,

First, 60% is way off for genotype 1b. I don't think there has

actually been ANY results for just 1b's. They always group 1a and 1b

together, and 1a has a much better chance of response than 1b.

Second, the 60% success rate was for genotype 1's (combined) and with

ribavirin (that 33% is monotherapy - the Peg-Intron alone). Also,

complience to treatment makes a big difference. Along these same

lines, those were results in controlled studies, and they are still

fairly new. In real practice the actual SVR is going to be lower, at

least until the doctors learn how to best use the new drugs and treat

the side effects so that there is a greater amount of compliance to

the treatment protocol. Once the doctors get more experience the SVR

will probably go up. Experience counts! Sticking with it, not

missing any doses, not having to reduce your dose - that makes a BIG

difference! Third: if you get fibrosis it does NOT mean you will

progess to cirrhosis. You might - but you also might not. The general

'rule' is that anyone with a fibrosis score of 2 has a good chance of

progressing to cirrhosis. There is no way right now to know if you

will progress or not. Also, if you get fibrosis, it does not mean you

are stuck with it forever. I had stage one fibrosis and a year of

combo got rid of all of it. It is never to late to treat up until

decompensation of the liver occurs. Then things get a bit risky.

However, the new guidelines for treatment of HCV states that since

the success rate is now much better than it used to be they should

treat everyone. He is probably just following the new protocols.

Don't worry about it. It's YOUR decision. There is absolutely no

reason to jump into treatment now unless you just want to.

Personally, I wouldn't. If I was going to do anything I would wait

for the Pegasys to become available. I think it will be slightly more

effective, and many doctors think the side effects are a bit easier

than with the Peg-Intron. It's not like making a decision to NOT

treat now is final! You can always change your mind later if your

situation changes. Some doctors just have a problem with people who

think for themselves. Sometimes if they are good doctors who really

know their stuff it is worth putting up with (it's HARD to find

doctors who even want to treat HCV, much less know a whole lot about

it), but if he just doens't know what he is talking about and isn't

willing to listen to how you feel, change doctors. Finding a doctor

you can work WITH (not for, lol) is worth the effort!

Claudine

__________________________________________________

[Guest guest]

Blood tests, yes. Biopsy, no. Are you sure he didn't mean a viral

load test at 3 - 6 months?

C

--- Marilyn Wilkinson <MarilynWilkinson@...> wrote:

> One thing I forgot in my last post: the doctor also said they

> would check my blood every week for the first month I was on

> treatment, then once a month, and then do another biopsy once I had

> been on treatment 3 - 6 months. Is this normal?

>

> Marilyn

>

__________________________________________________

[Guest guest]

Marilyn,

This doc would also tell you it is impossible to recover from end stage without a transplant...Bulls*$#!. I did...Glynda did....and Dan is, and others are undetectable and off the transplant list!

Your doc is either wrong, or outright lied to you about the success rate...not exactly the person I would want to entrust my life to.

Fact is they do it everyday....How many of ya'all beleive the new peg combo has an 80% success rate? Fine print says it falls to 20% after a year! You have that 20% chance without tx for crying out loud. And since the tx will permanantly damage your body, and MOST never completely recover from the tx....it is a HUGE risk to take.

Terrain is all, Louis Pastuer said....

Don't be bullied, Marilyn. This is your life.

Peace, Jeanine

http://hepchelp.homestead.com

>From: "Marilyn Wilkinson"

>Reply- >

>Subject: [ ] Re: Doctor visit >Date: Wed, 4 Sep 2002 14:31:09 -0500 >MIME-Version: 1.0 >Received: from n23.grp.scd. ([66.218.66.79]) by mc4-f39.law16.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Wed, 4 Sep 2002 12:29:43 -0700 >Received: from [66.218.66.98] by n23.grp.scd. with NNFMP; 04 Sep 2002 19:29:35 -0000 >Received: (EGP: mail-8_1_0_1); 4 Sep 2002 19:29:34 -0000 >Received: (qmail 88754 invoked from network); 4 Sep 2002 19:29:34 -0000 >Received: from unknown (66.218.66.216) by m15.grp.scd. with QMQP; 4 Sep 2002 19:29:34 -0000 >Received: from unknown (HELO swan.mail.pas.earthlink.net) (207.217.120.123) by mta1.grp.scd. with SMTP; 4 Sep 2002 19:29:34 -0000 >Received: from dialup-166.90.68.116.dial1.chicago1.level3.net ([166.90.68.116] helo=r3s8c9)by swan.mail.pas.earthlink.net with smtp (Exim 3.33 #1)id 17mfqH-0003n9-00for ; Wed, 04 Sep 2002 12:29:34 -0700 >X-eGroups-Return: sentto-2436732-2422-1031167775-hepc=hotmail.com@... >X-Sender: MarilynWilkinson@... >X-Apparently- >Message-ID: <003601c25449$a01d0f40$74445aa6@r3s8c9> >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 5.00.2615.200 >X-MIMEOLE: Produced By Microsoft MimeOLE V5.00.2615.200 >X--Profile: mwbobby >Mailing-List: list ; contact -owner >Delivered-mailing list >Precedence: bulk >List-Unsubscribe:

>Return-Path: sentto-2436732-2422-1031167775-hepc=hotmail.com@... >X-OriginalArrivalTime: 04 Sep 2002 19:29:43.0578 (UTC) FILETIME=[6BAF1FA0:01C25449] > >One thing I forgot in my last post: the doctor also said they would check my blood every week for the first month I was on treatment, then once a month, and then do another biopsy once I had been on treatment 3 - 6 months. Is this normal? > >Marilyn Join the world’s largest e-mail service with MSN Hotmail. Click Here

[Guest guest]

Jeanine,

Thanks for your comments. It's good to hear about others' experiences. I found a statement put out by the NIH last June. It clearly said that if you contract Hep C (don't know if it specified genotype) as a child, from a transfusion, have had it for more than 20 years, have no liver damage, you will probably go through life not getting liver damage unless you use alcohol or other things that damage the liver. Well, that's me!

When he said the stuff about once fibrosis begins, there is no way to prevent cirrhosis, I knew he was full of it. He told me most people go through the tx with no side effects and live normal lives. He may be right, but there are still plenty of people who permanently damage themselves with the tx, and he can't tell me I won't be one of them.

Thank you again. It's such a comfort to have this list to come to. Without it, I would only have the doctors and the drug companies to go to for information - on the list, there is no bottom line or hidden agenda.

Marilyn

Re: [ ] Re: Doctor visit

Marilyn,

This doc would also tell you it is impossible to recover from end stage without a transplant...Bulls*$#!. I did...Glynda did....and Dan is, and others are undetectable and off the transplant list!

Your doc is either wrong, or outright lied to you about the success rate...not exactly the person I would want to entrust my life to.

Fact is they do it everyday....How many of ya'all beleive the new peg combo has an 80% success rate? Fine print says it falls to 20% after a year! You have that 20% chance without tx for crying out loud. And since the tx will permanantly damage your body, and MOST never completely recover from the tx....it is a HUGE risk to take.

Terrain is all, Louis Pastuer said....

Don't be bullied, Marilyn. This is your life.

Peace, Jeanine

[Guest guest]

Dear Marilyn,

Even though only 20% of HCV infected people will become chronic, and only about 20% of those people will actually succumb to HCV related disease, like liver failure. Please do not make the mistake of ignoring the fact that you are HCV+. There is a balance between the terror tactics you doc needs to earn a living and the wisdom for staying well.

We should all take a pro-active approach to our health, HCV or not. You can ensure your body never suffer any damage from the virus, and can repair any damage already done.

HCV was the best thing that ever happened to me, as it has taught me how to live a life impervious to disease. I would take every miserable horrorfying moment all over again to learn what I have learned about healing. I fear NO pathogen - cancer, west nile, small pox...

NO pathogen can live in an electron rich environment.

Peace, Jeanine

http://hepchelp.homestead.com

>From: "Marilyn Wilkinson"

>Reply- >

>Subject: Re: [ ] Re: Doctor visit >Date: Thu, 5 Sep 2002 13:38:11 -0500 >MIME-Version: 1.0 >Received: from [66.218.66.78] by hotmail.com (3.2) with ESMTP id MHotMailBF40F084005E4004318B42DA424E14743; Thu, 05 Sep 2002 11:42:19 -0700 >Received: from [66.218.67.201] by n22.grp.scd. with NNFMP; 05 Sep 2002 18:38:17 -0000 >Received: (EGP: mail-8_1_0_1); 5 Sep 2002 18:38:13 -0000 >Received: (qmail 14313 invoked from network); 5 Sep 2002 18:38:13 -0000 >Received: from unknown (66.218.66.216) by m9.grp.scd. with QMQP; 5 Sep 2002 18:38:13 -0000 >Received: from unknown (HELO scaup.mail.pas.earthlink.net) (207.217.120.49) by mta1.grp.scd. with SMTP; 5 Sep 2002 18:38:16 -0000 >Received: from dialup-63.215.118.80.dial1.chicago1.level3.net ([63.215.118.80] helo=r3s8c9)by scaup.mail.pas.earthlink.net with smtp (Exim 3.33 #1)id 17n1W9-0002Eg-00for ; Thu, 05 Sep 2002 11:38:14 -0700 >From sentto-2436732-2433-1031251094-hepc Thu, 05 Sep 2002 11:43:28 -0700 >X-eGroups-Return: sentto-2436732-2433-1031251094-hepc=hotmail.com@... >X-Sender: MarilynWilkinson@... >X-Apparently- >Message-ID: <005e01c2550b$99ec5a00$5076d73f@r3s8c9> >References:

>X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 5.00.2615.200 >X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 >X--Profile: mwbobby >Mailing-List: list ; contact -owner >Delivered-mailing list >Precedence: bulk >List-Unsubscribe:

> >Jeanine, > >Thanks for your comments. It's good to hear about others' experiences. I found a statement put out by the NIH last June. It clearly said that if you contract Hep C (don't know if it specified genotype) as a child, from a transfusion, have had it for more than 20 years, have no liver damage, you will probably go through life not getting liver damage unless you use alcohol or other things that damage the liver. Well, that's me! > >When he said the stuff about once fibrosis begins, there is no way to prevent cirrhosis, I knew he was full of it. He told me most people go through the tx with no side effects and live normal lives. He may be right, but there are still plenty of people who permanently damage themselves with the tx, and he can't tell me I won't be one of them. > >Thank you again. It's such a comfort to have this list to come to. Without it, I would only have the doctors and the drug companies to go to for information - on the list, there is no bottom line or hidden agenda. > >Marilyn > Re: [ ] Re: Doctor visit > > > Marilyn, > > This doc would also tell you it is impossible to recover from end stage without a transplant...Bulls*$#!. I did...Glynda did....and Dan is, and others are undetectable and off the transplant list! > > Your doc is either wrong, or outright lied to you about the success rate...not exactly the person I would want to entrust my life to. > > Fact is they do it everyday....How many of ya'all beleive the new peg combo has an 80% success rate? Fine print says it falls to 20% after a year! You have that 20% chance without tx for crying out loud. And since the tx will permanantly damage your body, and MOST never completely recover from the tx....it is a HUGE risk to take. > > Terrain is all, Louis Pastuer said.... > > Don't be bullied, Marilyn. This is your life. > > > Peace, Jeanine Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

Hi Jeanine,

I could never forget that I am positive for Hepatits C! I got knocked for such a loop just learning I had it. I'm trying to learn what I can about homeopathics. I'm on a good multivitamin (no iron), and have begun taking milk thistle and colostrum for starters. As my energy has increased, I've begun walking again. I'm fortunate in that my body has never tolerated "junk food", so my diet is very good and my weight is normal. I've been under good chiropractic care for over 15 years, because I believe I need to do whatever I can for my body to stay healthy.

I'm signing up for a yoga class because I believe in a strong mind/body connection. I have meditated for years. I truly think our bodies have everything they need to keep us healthy if we keep them free from toxins as much as possible.

I can't believe how much better I feel just making a few changes. Last Saturday, I went outside and trimmed 12 really overgrown bushes. It felt *wonderful* - I haven't wanted to do anything physical like that in probably years. My brain fog has almost completely gone away. I just don't intend to let some misguided physician take away the progress I've made. JMHO

Thanks for your concern, honey.

Marilyn

Re: [ ] Re: Doctor visit

Dear Marilyn,

Even though only 20% of HCV infected people will become chronic, and only about 20% of those people will actually succumb to HCV related disease, like liver failure. Please do not make the mistake of ignoring the fact that you are HCV+. There is a balance between the terror tactics you doc needs to earn a living and the wisdom for staying well.

We should all take a pro-active approach to our health, HCV or not. You can ensure your body never suffer any damage from the virus, and can repair any damage already done.

HCV was the best thing that ever happened to me, as it has taught me how to live a life impervious to disease. I would take every miserable horrorfying moment all over again to learn what I have learned about healing. I fear NO pathogen - cancer, west nile, small pox...

NO pathogen can live in an electron rich environment.

Peace, Jeanine

http://hepchelp.homestead.com

[Guest guest]

In a message dated 09/05/2002 1:48:54 AM Eastern Daylight Time, claudineintexas@... writes:

Blood tests, yes. Biopsy, no. Are you sure he didn't mean a viral

load test at 3 - 6 months?

C

--- Marilyn Wilkinson <MarilynWilkinson@...> wrote:

> One thing I forgot in my last post: the doctor also said they

> would check my blood every week for the first month I was on

> treatment, then once a month, and then do another biopsy once I had

> been on treatment 3 - 6 months. Is this normal?

> > Marilyn

Everything but the biopsy .......6 mos you would get your viral load test again....

[Guest guest]

--- Jeanine London <hepc@...> wrote:

<P> & nbsp; Fact is they do it everyday....How many of ya'all beleive

the new peg combo has an 80% success rate? Fine print says it falls

to 20% after a year! & nbsp; You have that 20% chance without tx for

crying out loud. And since the tx will permanantly damage your body,

and MOST never completely recover from the tx....it is a HUGE risk to

take.</P>

Jeanine - this simply is not true. Where exactly is this fine print?

That sounds like some old info from interferon monotherapy! The

sustained viral response for the OLD combo is right at 50%, and I am

not talking about end of treatment response. I am talking SUSTAINED

response at 6 months post treatment. And if you still have an

undetectable viral load 6 months post treatment your chance of

maintaining that response is about 95% - 97%. At 2 years later it

darn near 100%. There have been NO (that is ZERO) late relapses of

SVR to the old combo 2 1/2 years after they stopped treatment. (And

yes, I CAN document this info!) As for the new Pegylated interferon

combo, YES, the SVR overall is about 80%. It does vary by genotype,

but overall, that 80% is correct. And, in those who are at least 80%

compliant at least 80% of the time they are on treatment the SVR is

even higher. (Compliance is very important.) An inexperienced doctor

can lower your odds of a SVR, and very often the SVR of new

treatments drops when it first becomes available outside of studies,

but as doctors become more experienced with prescribing it, and

properly treating any side effects that might otherwise cause someone

to have to dose-reduce, or stop, the SVR goes back up. And as for

this comment - " And since the tx will permanantly damage your body,

and MOST never completely recover from the tx " - this is very

misleading. SOME people have permanent damage from treatment, but not

all, not even most. I didn't even respond to treatment and I still

feel much better now than I did before treatment. Some people have

permanent damage from the HCV itself - even if they do get rid of the

virus - especially damage caused from cryoglobulinemia or immune

disorders that have been triggered by HCV. Interferon can trigger

autoimmune disorders in people who have the genetic trait, but so can

HCV itself, or many other viruses for that matter.

I understand your enthusiasm for what has worked for you, and think

it's great that you are telling others about it, but I believe it's

important to be accurate in your statements. It's up to each

individual to read and learn and research the facts and then make

their own decision, whatever is right for them, but what they are

reading and learning needs to be accurate information or they can't

make a truly informed, educated decision.

Claudine

__________________________________________________

[Guest guest]

I herd the same thing from my Doctor, that Jeanine London is saying.

The test they run most are genotype 3. Let say they have 100 people to test

80% on them are genotype 3. I my self am genotype1, and failed tx after 24

weeks.

My Doctor. said to me that the response rate is more like 40% giving the

fact that most test are genotype 3. What I got out of what he said was 80%

of genotype 3 has a response with tx.

Then it drops to 40% when you add all the other genotypes that have no

response.

My Dr. told me to take Milk Thistle after failing tx.

Sincerely,

Mark Chiocchi

Re: [ ] Re: Doctor visit

> --- Jeanine London <hepc@...> wrote:

>

> <P> & nbsp; Fact is they do it everyday....How many of ya'all beleive

> the new peg combo has an 80% success rate? Fine print says it falls

> to 20% after a year! & nbsp; You have that 20% chance without tx for

> crying out loud. And since the tx will permanantly damage your body,

> and MOST never completely recover from the tx....it is a HUGE risk to

> take.</P>

>

> Jeanine - this simply is not true. Where exactly is this fine print?

> That sounds like some old info from interferon monotherapy! The

> sustained viral response for the OLD combo is right at 50%, and I am

> not talking about end of treatment response. I am talking SUSTAINED

> response at 6 months post treatment. And if you still have an

> undetectable viral load 6 months post treatment your chance of

> maintaining that response is about 95% - 97%. At 2 years later it

> darn near 100%. There have been NO (that is ZERO) late relapses of

> SVR to the old combo 2 1/2 years after they stopped treatment. (And

> yes, I CAN document this info!) As for the new Pegylated interferon

> combo, YES, the SVR overall is about 80%. It does vary by genotype,

> but overall, that 80% is correct. And, in those who are at least 80%

> compliant at least 80% of the time they are on treatment the SVR is

> even higher. (Compliance is very important.) An inexperienced doctor

> can lower your odds of a SVR, and very often the SVR of new

> treatments drops when it first becomes available outside of studies,

> but as doctors become more experienced with prescribing it, and

> properly treating any side effects that might otherwise cause someone

> to have to dose-reduce, or stop, the SVR goes back up. And as for

> this comment - " And since the tx will permanantly damage your body,

> and MOST never completely recover from the tx " - this is very

> misleading. SOME people have permanent damage from treatment, but not

> all, not even most. I didn't even respond to treatment and I still

> feel much better now than I did before treatment. Some people have

> permanent damage from the HCV itself - even if they do get rid of the

> virus - especially damage caused from cryoglobulinemia or immune

> disorders that have been triggered by HCV. Interferon can trigger

> autoimmune disorders in people who have the genetic trait, but so can

> HCV itself, or many other viruses for that matter.

>

> I understand your enthusiasm for what has worked for you, and think

> it's great that you are telling others about it, but I believe it's

> important to be accurate in your statements. It's up to each

> individual to read and learn and research the facts and then make

> their own decision, whatever is right for them, but what they are

> reading and learning needs to be accurate information or they can't

> make a truly informed, educated decision.

>

> Claudine

>

>

> __________________________________________________

>

[Guest guest]

Claudine,

You're right, he does have a problem with people who think for themselves. He is very highly regarded among his colleagues, plus he is a foreign doctor who comes from a culture where the women don't get to think for themselves. I think he's very competent, he takes time and he listens. He stated several times that it was my decision.

He did, however, say another biopsy after so many months. He said ALT/AST and viral levels don't give the true picture of what's going on with the liver during treatment. Hmmmm......one more thing to think about.

He also says that he doesn't see Pegasys coming on the market for several more years. He said he heard it was coming out of clinical trials last year, and then the year before. He told me not to wait for treatment because I was waiting for Pegasys. I don't know why he said that, because I didn't give him that indication.

Thank you for all your good information.

Marilyn

Re: [ ] Doctor visit

He is probably just following the new protocols.Don't worry about it. It's YOUR decision. There is absolutely noreason to jump into treatment now unless you just want to.Personally, I wouldn't. If I was going to do anything I would waitfor the Pegasys to become available. I think it will be slightly moreeffective, and many doctors think the side effects are a bit easierthan with the Peg-Intron. It's not like making a decision to NOTtreat now is final! You can always change your mind later if yoursituation changes. Some doctors just have a problem with people whothink for themselves.

[Guest guest]

--- Jeanine London <hepc@...> wrote:

<P> & nbsp; Even though only 20% of HCV infected people will become

chronic, and only about 20% of those people will actually succumb to

HCV related disease, like liver failure.

Did you mean 20% will develop cirrhosis?

C

__________________________________________________

[Guest guest]

The FDA approved a 'fast track' application review a couple of months

ago. That means they have 6 months to approve or disapprove. They

rarely aggree to fast track anything that doesn't look promising and

shows that it could make a significant difference in treatment. And

you DON'T need a biopsy at 3 or 6 months. You just need a viral load

test to see if you are responding or not.

Claudine

--- Marilyn Wilkinson <MarilynWilkinson@...> wrote:

> He also says that he doesn't see Pegasys coming on the market for

> several more years. He said he heard it was coming out of clinical

> trials last year, and then the year before. He told me not to wait

> for treatment because I was waiting for Pegasys. I don't know why

> he said that, because I didn't give him that indication.

__________________________________________________

[Guest guest]

Marilyn,

Any foreign doctor who comes from a culture where the women don't get to think for themselves, and is making feel that you're stupid.

FIND A NEW Doctor.

He don't care about you, he just wants to put you on anything he can.

Listen to what others are saying here. I wish I had known about this group in Jan 2002. I would had never went on tx.

It was the worse 6 months on my life.

I can't blame my Doctor, he has been very good to me and cared about what I was going through. He told me the risk and he DID NOT lie to me about anything. He let me make the decision my sell and did not try to push TX on me,

Sincerely,Mark Chiocchi

[Guest guest]

Claudine, I recall reading one of your posts, where you tell all of us, how

the " treatment " caused you to

have constant ringing in your ears, and how it darn near drives you crazy.

You also mentioned a certain

type of noise you use to disguise the ringing in your ears....am I correct

on this? I believe I still have that post.

If this is so, please inform the people on this list,......of this being one

of the terrible side-effects of the

poisonous treatment. For example, interferon etc.

Please don't take offense, I just want the people to know all sides of this.

Margie

Re: [ ] Re: Doctor visit

>

>

> > --- Jeanine London <hepc@...> wrote:

> >

> > <P> & nbsp; Fact is they do it everyday....How many of ya'all beleive

> > the new peg combo has an 80% success rate? Fine print says it falls

> > to 20% after a year! & nbsp; You have that 20% chance without tx for

> > crying out loud. And since the tx will permanantly damage your body,

> > and MOST never completely recover from the tx....it is a HUGE risk to

> > take.</P>

> >

> > Jeanine - this simply is not true. Where exactly is this fine print?

> > That sounds like some old info from interferon monotherapy! The

> > sustained viral response for the OLD combo is right at 50%, and I am

> > not talking about end of treatment response. I am talking SUSTAINED

> > response at 6 months post treatment. And if you still have an

> > undetectable viral load 6 months post treatment your chance of

> > maintaining that response is about 95% - 97%. At 2 years later it

> > darn near 100%. There have been NO (that is ZERO) late relapses of

> > SVR to the old combo 2 1/2 years after they stopped treatment. (And

> > yes, I CAN document this info!) As for the new Pegylated interferon

> > combo, YES, the SVR overall is about 80%. It does vary by genotype,

> > but overall, that 80% is correct. And, in those who are at least 80%

> > compliant at least 80% of the time they are on treatment the SVR is

> > even higher. (Compliance is very important.) An inexperienced doctor

> > can lower your odds of a SVR, and very often the SVR of new

> > treatments drops when it first becomes available outside of studies,

> > but as doctors become more experienced with prescribing it, and

> > properly treating any side effects that might otherwise cause someone

> > to have to dose-reduce, or stop, the SVR goes back up. And as for

> > this comment - " And since the tx will permanantly damage your body,

> > and MOST never completely recover from the tx " - this is very

> > misleading. SOME people have permanent damage from treatment, but not

> > all, not even most. I didn't even respond to treatment and I still

> > feel much better now than I did before treatment. Some people have

> > permanent damage from the HCV itself - even if they do get rid of the

> > virus - especially damage caused from cryoglobulinemia or immune

> > disorders that have been triggered by HCV. Interferon can trigger

> > autoimmune disorders in people who have the genetic trait, but so can

> > HCV itself, or many other viruses for that matter.

> >

> > I understand your enthusiasm for what has worked for you, and think

> > it's great that you are telling others about it, but I believe it's

> > important to be accurate in your statements. It's up to each

> > individual to read and learn and research the facts and then make

> > their own decision, whatever is right for them, but what they are

> > reading and learning needs to be accurate information or they can't

> > make a truly informed, educated decision.

> >

> > Claudine

> >

> >

> > __________________________________________________

> >

[Guest guest]

Thanks, Mark. I think I am going to find a new doctor. I've experienced so many medical mishaps in my life that I am *very* careful about taking any types of treatment.

Marilyn

Re: [ ] Doctor visit

Marilyn,

Any foreign doctor who comes from a culture where the women don't get to think for themselves, and is making feel that you're stupid.

FIND A NEW Doctor.

He don't care about you, he just wants to put you on anything he can.

Listen to what others are saying here. I wish I had known about this group in Jan 2002. I would had never went on tx.

It was the worse 6 months on my life.

I can't blame my Doctor, he has been very good to me and cared about what I was going through. He told me the risk and he DID NOT lie to me about anything. He let me make the decision my sell and did not try to push TX on me,

Sincerely,Mark Chiocchi

[Guest guest]

That's great Marilyn! Wish everyone was so involved in getting well. And you're right, our bodies have what they need to heal.....unfortunately our food and water supply has become so depleted of nutrients and hydrides, there is absolutely no way to get enough nourishment from them, esp. if one is HCV+. For example, a recent study on cabbage across North America showed not one cabbage, organic or commercial or homegrown, showed any Vitamin C...not one.

Then of course, we cook our food and destroy most of the benefits it should provide...and ALL the hydrides,which are the Life Force within the food which converts to the Life Force in our bodies. A body saturated in Hydrides becomes electron rich, and no pathogen can live in an electron rich environment. A hydride rich environment is also alkaline, and no pathogen can thrive and do damage in that kind of environment. A body saturated in Hydrides allows your cells to become free-flowing, to for the perfect stasis as was intended, allowing the whole cell to be exposed, to receive nutrients and oxygen, and to remove toxins and wastes from the cell. A body saturated in Hydrides allows cells to be continually repaired, and restores the Hydrogen bonds to the DNA, correcting the DNA. A body saturated in Hydrides stops the free radical cascade, and allows spent anti-oxident (which would have become a free radical after giving up its electron to nuetralize a free radical,) to be recycled over and over again. The anti-oxident capability of Active H- is 40,000x that of a glass of freshly squeezed organic O.J.....and then it recyles all other anti-oxidents in the body as well. ALL free radical damage is stopped, along with the aging process.

Restore your bioterrain, and everything else is moot....including Homeopathy....it is archaic in comparison.

Peace, Jeanine

http://hepchelp.homestead.com

>From: "Marilyn Wilkinson"

>Reply- >

>Subject: Re: [ ] Re: Doctor visit >Date: Thu, 5 Sep 2002 15:36:30 -0500 >MIME-Version: 1.0 >Received: from [66.218.66.77] by hotmail.com (3.2) with ESMTP id MHotMailBF41094300654004311C42DA424D0462485; Thu, 05 Sep 2002 13:36:48 -0700 >Received: from [66.218.66.98] by n21.grp.scd. with NNFMP; 05 Sep 2002 20:35:14 -0000 >Received: (EGP: mail-8_1_0_1); 5 Sep 2002 20:35:14 -0000 >Received: (qmail 76414 invoked from network); 5 Sep 2002 20:35:14 -0000 >Received: from unknown (66.218.66.216) by m15.grp.scd. with QMQP; 5 Sep 2002 20:35:14 -0000 >Received: from unknown (HELO scaup.mail.pas.earthlink.net) (207.217.120.49) by mta1.grp.scd. with SMTP; 5 Sep 2002 20:35:14 -0000 >Received: from dialup-65.57.14.107.dial1.chicago1.level3.net ([65.57.14.107] helo=r3s8c9)by scaup.mail.pas.earthlink.net with smtp (Exim 3.33 #1)id 17n3LL-00064D-00for ; Thu, 05 Sep 2002 13:35:12 -0700 >From sentto-2436732-2437-1031258114-hepc Thu, 05 Sep 2002 13:38:39 -0700 >X-eGroups-Return: sentto-2436732-2437-1031258114-hepc=hotmail.com@... >X-Sender: MarilynWilkinson@... >X-Apparently- >Message-ID: <002801c2551b$ec21a0e0$6b0e3941@r3s8c9> >References:

>X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 5.00.2615.200 >X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 >X--Profile: mwbobby >Mailing-List: list ; contact -owner >Delivered-mailing list >Precedence: bulk >List-Unsubscribe:

> >Hi Jeanine, > >I could never forget that I am positive for Hepatits C! I got knocked for such a loop just learning I had it. I'm trying to learn what I can about homeopathics. I'm on a good multivitamin (no iron), and have begun taking milk thistle and colostrum for starters. As my energy has increased, I've begun walking again. I'm fortunate in that my body has never tolerated "junk food", so my diet is very good and my weight is normal. I've been under good chiropractic care for over 15 years, because I believe I need to do whatever I can for my body to stay healthy. > >I'm signing up for a yoga class because I believe in a strong mind/body connection. I have meditated for years. I truly think our bodies have everything they need to keep us healthy if we keep them free from toxins as much as possible. > >I can't believe how much better I feel just making a few changes. Last Saturday, I went outside and trimmed 12 really overgrown bushes. It felt *wonderful* - I haven't wanted to do anything physical like that in probably years. My brain fog has almost completely gone away. I just don't intend to let some misguided physician take away the progress I've made. JMHO > >Thanks for your concern, honey. > >Marilyn > Re: [ ] Re: Doctor visit > > > > Dear Marilyn, > > Even though only 20% of HCV infected people will become chronic, and only about 20% of those people will actually succumb to HCV related disease, like liver failure. Please do not make the mistake of ignoring the fact that you are HCV+. There is a balance between the terror tactics you doc needs to earn a living and the wisdom for staying well. > > We should all take a pro-active approach to our health, HCV or not. You can ensure your body never suffer any damage from the virus, and can repair any damage already done. > > HCV was the best thing that ever happened to me, as it has taught me how to live a life impervious to disease. I would take every miserable horrorfying moment all over again to learn what I have learned about healing. I fear NO pathogen - cancer, west nile, small pox... > > > NO pathogen can live in an electron rich environment. > > > > > Peace, Jeanine > > http://hepchelp.homestead.com MSN Photos is the easiest way to share and print your photos: Click Here

[Guest guest]

Drkoop.com

20% will become chronic....then of that group less than 20% will die from HCV related disease, like liver failure..

Makes you wonder why they rush folks off to tx......

Peace, Jeanine

http://hepchelp.homestead.com

>From: claudine intexas

>Reply- > >Subject: Re: [ ] Re: Doctor visit >Date: Thu, 5 Sep 2002 18:18:26 -0700 (PDT) >MIME-Version: 1.0 >Received: from n30.grp.scd. ([66.218.66.87]) by mc2-f13.law16.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Thu, 5 Sep 2002 18:18:59 -0700 >Received: from [66.218.67.192] by n30.grp.scd. with NNFMP; 06 Sep 2002 01:18:28 -0000 >Received: (EGP: mail-8_1_0_1); 6 Sep 2002 01:18:27 -0000 >Received: (qmail 62320 invoked from network); 6 Sep 2002 01:18:26 -0000 >Received: from unknown (66.218.66.216) by m10.grp.scd. with QMQP; 6 Sep 2002 01:18:26 -0000 >Received: from unknown (HELO web12108.mail.) (216.136.172.28) by mta1.grp.scd. with SMTP; 6 Sep 2002 01:18:26 -0000 >Received: from [216.111.227.60] by web12108.mail. via HTTP; Thu, 05 Sep 2002 18:18:26 PDT >X-eGroups-Return: sentto-2436732-2447-1031275107-hepc=hotmail.com@... >X-Sender: claudineintexas@... >X-Apparently- >Message-ID: <20020906011826.46358.qmail@...> >In-Reply-

>X--Profile: claudineintexas >Mailing-List: list ; contact -owner >Delivered-mailing list >Precedence: bulk >List-Unsubscribe:

>Return-Path: sentto-2436732-2447-1031275107-hepc=hotmail.com@... >X-OriginalArrivalTime: 06 Sep 2002 01:18:59.0081 (UTC) FILETIME=[608CDF90:01C25543] > >--- Jeanine London wrote: > >

Even though only 20% of HCV infected people will become >chronic, and only about 20% of those people will actually succumb to >HCV related disease, like liver failure. > >Did you mean 20% will develop cirrhosis? >C > >__________________________________________________ >

[Guest guest]

Sorry Margie, but you are remember things a bit wrong. I DO have

terrible tinnitus, and it does drive me crazy! But the tinnitus

started before I even knew I had HCV. In fact, it was a combination

of neck pain, headaches, and the tinnitus which drove me to the

doctor in the first place. I kept insisting my something in my neck

was causing the ringing in my ears. And I kept seeing different

doctors, who would all say there was no way anything in my neck could

cause the tinnitus (even when I copied a page out of textbook which

said cervical spondylosis could cause it), and they all did blood

tests and told me my LFT's were elevated. Then they would all decide

it was the pain medications I was taking for the neck pain causing

the elevated LFT's. Another change in doctors, and that one called

and asked if it was ok to run a hepatitis panel on me to see if that

was causing the elevated LFT's. I thought I was humoring the doctor.

What a shock when it came back positive for HCV! But no, interferon

did not cause my tinnitus. I had it several years before I was ever

on treatment. However, a chiropractor did finally help some with it.

It's not nearly as bad as it was - only when my neck hurts. However,

if all you want is me to post what are the potential side effects of

interferon I'll be happy to do so. It certainly has side effects and

certain risks, just like all medications. As to how each person will

be affected, there is no way to know. One person may be so sick they

can't get out of bed, another may never feel a thing. For most people

it is somewhere in between. Not fun, but tolerable. As a matter of

fact, you or anyone else who wants to can just look up all the

possible side effects and warnings by going to http://www.rxlist.com

All the same prescribing information/warnings, etc., that a doctor

would get is there. Here is the URL for both interferon and

ribavirin: http://www.rxlist.com/cgi/generic2/ribav.htm Here is the

URL for Peg-Intron:

http://www.rxlist.com/cgi/generic2/peginterferon.htm The side

effects of ribavirin are the same no matter which form of interferon

is used. Yes, these are heavy duty drugs, even though interferon is a

biological medicine - something your body normally creates to fight

off viral infections. I wouldn't want to take these drugs unless I

knew my doctor was experienced and knowledeable in their use and

these side effects, and was experienced in treating the side effects.

Yes, there will be some people who have very bad reactions to these

medications. There are also some people who will die from their HCV,

and the chance is greater if the HCV is not treated. Unfortunately,

there is really no way to know in advance about how a person will

react to treatment, and there is no way to know in advance if someone

will progress to liver failure - although biopsy results (especially

more than one is done several years apart) can give you an idea if

you might be one who will progress.

Claudine

--- Margie Schlicter <marjiro@...> wrote:

> Claudine, I recall reading one of your posts, where you tell all

> of us, how

> the " treatment " caused you to

> have constant ringing in your ears, and how it darn near drives you

> crazy.

> You also mentioned a certain

> type of noise you use to disguise the ringing in your ears....am I

> correct

> on this? I believe I still have that post.

> If this is so, please inform the people on this list,......of this

> being one

> of the terrible side-effects of the

> poisonous treatment. For example, interferon etc.

> Please don't take offense, I just want the people to know all sides

> of this.

> Margie

__________________________________________________

[Guest guest]

--- Jeanine London <hepc@...> wrote:

Drkoop.com

20% will become chronic....then of that group less than 20% will die

from HCV related disease, like liver failure..

Makes you wonder why they rush folks off to tx...

Here is the URL to Dr. Koops web site on HCV. It is a very

informative site, not just about HCV, but about viruses in general

too, and how your liver functions.

See http://www.epidemic.org/contents.html

Here is a quote from the section: " What is Hepatitis C "

http://www.epidemic.org/theFacts/essentials/whatIsHepatitis C.html

" As a result, most Hepatitis C infections (80-90%) become chronic and

lead to liver disease, including cirrhosis (scarring of the liver

tissues) and liver failure. Hepatitis C infection is typically mild

in its early stages, and it is rarely recognized until it has caused

significant damage to the liver. The cycle of disease from infection

to significant liver damage can take 20 years or more. "

And under " Disease Progression "

http://www.epidemic.org/theFacts/hepatitisC/diseaseProgression.html

" Low level infection, in which the infected individual is virtually

asymptomatic but still highly contagious, may continue for years,

even decades, before progressing significantly. However, more than

80% of infected individuals eventually progress to the chronic stage

of the disease, which seems to eventually result in cirrhosis

(scarring of the liver tissue), and end-stage liver disease. This

appears to take, on average, about 20 years to develop.

__________________________________________________