More questions

[Guest guest]

At 11:04 24.02.99 -0800, you wrote:

>Thank you for your response..I do eat a lot of fresh fruits and vegetables.

>Fiber intake is not a problem or concern with me. What I was getting at in

>my previous question was if the frequent use of fruit juices from a machine

>had the same or similar affect on ones system as eating a very simple sugar

>like honey........after all fruit juices are quite simple in structure but

>yet still more complex than honey or table sugar. I am very active.I run

>and lift weights. I am concerned about the quick blast in blood sugar

>followed by an over production of insulin to compensate and then the

>hypoglycemic response to follow. I can eat the the sugar (juice) of 6

>apples in one minute with my juice machine.....What do you think about all

>this fructose going into my system all at once even as an active person?

> Jay Kordich. " The Juice Man " almost lives on juices( and raw foods) He

>has been preaching this for years and he is extremely healthy and

>youthful...What do you think about Jay and his approach to eating?

>Thank you again

You are living in Canada, I suppose.

Fruits does not ripe in Canada whole year around.

Where does Jay Kordich live ? USA ?

Here you will get few ideas to think:

I do not think that fruit juice is better then whole fruit.

If you eat whole fruit, you can not eat 6 apples in one minute.

It is true that you can get much more sugar in your blood if you take a

juice, instead of Whole fruit.

It takes shorter time to digest and to absorbe.

It is good as a therapy for few months or few years, but ...

Our bodies are adjusted through milions of years of evolution, and our

ancestors have been for millions of years eating whole foods.

I do not think that you are going to feel any health problem after 10 years

of this diet, but after 30 years it may show as not perfect diet.

And problems may be shown on your children, if you decide to have children.

I have very often seen children with many signs of nutritional deficiency,

children of some people who have been living on raw foods (juices) diet for

many years. (In Scandinavia -> Norway- Sweden)

Some climates does not tolerate mistakes.

Parents are 100% healthy, but not children.

We can not play games with evolution.

It is not natural !!!

You have to try to feel your body yourself, and make decision yourself.

Try to feel the diffrents when eating whole apples for many days, and when

eating only juices.

I can feel the differents. I live in cold country, Norway.

I have no direct answer to your question.

I only have some concerns.

You have to find an answer for yourself.

Dusan Stojkovic

Norway

[Guest guest]

Hi!

I have a friend whose husband is an Endocrinologist (they live in NY, so no

help to me.) She has recurring bouts with Lyme Disease and all kinds of

complications. Luckily, she gets excellent care. If you have a positive

Lyme Disease diagnosis, I can ask her where you can get good information

about it.

I've actually had fewer headaches since I've had AIH though when I do get a

headache, it is usually a terror. Nasal and sinus congestion seem to go

with AIH though I can't figure out why. It's been explained to me but I

seem to have lost track of the details. This could be causing the

headaches you're having. Also, blood pressure can become elevated and

glucose levels get out of whack. I don't know if either of them are

supposed to cause headaches, but when my husband's blood pressure starts to

skyrocket, he gets headaches. His doctors claim high blood pressure does

NOT cause headaches. Yeah, sure, but the only time he has a headache is

when his BP starts hitting the upper, danger ranges.

There's great dispute about Tylenol. Some people think you can't take it

at all. I've been told by every doctor I've seen since I've had AIH (and

that's a lot of doctors) that limited amounts of Tylenol is okay. By

limited, I was told that I could take 2 Tylenol once or twice a day at

most. However, my Hepatologist also told me that instead of Tylenol, I can

take either Advil or Motrin, in very limited quantities. He said

whichever is most successful for arthritis-like pain is okay, but each

works differently.

Take care,

Geri

[Guest guest]

Hi Hope! Geoff Crenshaw here.

Hess wrote:

>

> 1. Can I search for a specific topic in the archives or do I have to

> read through each digest and search on my own for topics?

You can search for topics, words, whatever. Last time I did it, it came

up with all of the digests that contained that word. So, even though you

search, you mst still wade.

> 2. What is the url for the general website?

http://www.rheumatic.org

> 3. How can I get info on RA SPES?

There's some in the archives, or just ask. What is it you need?

--

Geoff Crenshaw -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Religion: Man's attempt to discover God

Christianity: God's offer to save humankind

[Guest guest]

Please delete me from your e-mail list. Thanks

[Guest guest]

,

Hang in there, I have had the flu and your symptoms sound a lot like what I am going through it just hit me all at once. Even though I had been to the doc and had 101.8 fever he didn't seem concerned but it was apparently there for a reason!!

I am feeling somewhat better today but still weak and tired from it... I have felt very dizzy at times and even had to sit down after having my blood drawn especially when they take a lot!!!!

Hope you are feeling better soon!!!

Peace,

Sherry

Hi all, Thanks for the answers to the last email. I had a pretty rough day yesterday. I went in to get my blood drawn and I passed out and vomitted! I've never had that happen before, never even felt queasy having my blood drawn before! Anyone have any insight into this? It seems very strange. Anyway, I'm still pretty ill, and sitting at home festering has helped me come up with some more questions. I have noticed a terrrible taste in my mouth that will not go away no matter what I try. Anyone else had this happen? I am also getting a runny nose and a sore throat. Should I be concerned? Sorry if these seem like silly questions, it's just that I'm not getting any help from my Dr. except she keeps wanting to increase the antibiotic which I think is the WRONG thing to do. I'm hoping to get to the bookstore this weekend so I can do some research, but until then I just thought I'd ask. Thanks again for all of the support!I don't know what I would do if I hadn't found this group. Well, I know I probably wouldn't have the guts to continue this treatment! Hoping things turn around soon. To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

,

I have a terrible taste in my mouth most of the time also. I believe mine

is from a gastro problem. A little refux I believe.

Maybe it is sinus drainage. That can leave a pretty nasty flavor and could

explain the sore throat. It is such a bad time with everything blooming if

you have allergies.

At 09:58 PM 3/31/2001 +0930, you wrote:

>Hi ,

>

>> I have noticed a terrrible taste in my mouth that will not go away

>> no matter what I try. Anyone else had this happen? I am also getting a

>> runny nose and a sore throat. Should I be concerned?

>

>As someone else said, you might just have the flu coming on. But it also

>might be a herxheimer reaction to the antibiotic - Dr. Stuart Weg, a

>specialist in pain management and the herxheimer reaction, described

>'flu-like symptoms' as an expression of the herxheimer reaction. You might

>like to read Dr. Weg's page at rheumatic.org/weg.htm.

>

>Chris.

>

>

>

>

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

,

Flu like symptoms may also mean liver toxicity. Check your liver enzymes.

Good luck

Sherry wrote:

,

Hang in there, I have had the flu and your

symptoms sound a lot like what I am going through it just hit me all at

once. Even though I had been to the doc and had 101.8 fever he didn't seem

concerned but it was apparently there for a reason!!

I am feeling somewhat better today but still

weak and tired from it... I have felt very dizzy at times and even had

to sit down after having my blood drawn especially when they take a lot!!!!

Hope you are feeling better soon!!!

Peace,

Sherry

Hi all,

Thanks for the answers to the last email. I had a pretty rough

day

yesterday. I went in to get my blood drawn and I passed out and

vomitted! I've never had that happen before, never even felt queasy

having my blood drawn before! Anyone have any insight into this?

It

seems very strange. Anyway, I'm still pretty ill, and sitting

at home

festering has helped me come up with some more questions.

I have noticed a terrrible taste

in my mouth that will not go away

no matter what I try. Anyone else had this happen? I am also getting

a

runny nose and a sore throat. Should I be concerned?

Sorry if these seem like silly questions,

it's just that I'm not

getting any help from my Dr. except she keeps wanting to increase

the

antibiotic which I think is the WRONG thing to do.

I'm hoping to get to the bookstore

this weekend so I can do some

research, but until then I just thought I'd ask.

Thanks again for all of the support!

I don't know what I would do if I hadn't found this group. Well,

I know

I probably wouldn't have the guts to continue this treatment! Hoping

things turn around soon.

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Someone posted about the Tylenol being bad for the liver.. My doctor told me to take that since it would do less damage to my stomach.. so I have been using it a few times a week but I take four at a time... I am not sure how long ago I had my liver check I think it was done with the last batch of test...

I am still having "the flu" myself and it does not normally last this long and keep hitting so hard.

I am going to make an appointment with my GP anyway so I will ask him about it..

BTW are there any over the counter pain relievers that do not harm the stomach or cause liver problems or should I just rotate them????

Geoff if you have anything that you know of... that is an herb I would like to hear about it. I know someone had some problems with you selling stuff but I am asking so hopefully no one will be offended... You seem to know a lot about the products even if you don't have anything any advice would be greatly appreciated!!

Peace,

Sherry

, Flu like symptoms may also mean liver toxicity. Check your liver enzymes. Good luck Sherry wrote:

,

Hang in there, I have had the flu and your symptoms sound a lot like what I am going through it just hit me all at once. Even though I had been to the doc and had 101.8 fever he didn't seem concerned but it was apparently there for a reason!!

I am feeling somewhat better today but still weak and tired from it... I have felt very dizzy at times and even had to sit down after having my blood drawn especially when they take a lot!!!!

Hope you are feeling better soon!!!

Peace,

Sherry

Hi all, Thanks for the answers to the last email. I had a pretty rough day yesterday. I went in to get my blood drawn and I passed out and vomitted! I've never had that happen before, never even felt queasy having my blood drawn before! Anyone have any insight into this? It seems very strange. Anyway, I'm still pretty ill, and sitting at home festering has helped me come up with some more questions. I have noticed a terrrible taste in my mouth that will not go away no matter what I try. Anyone else had this happen? I am also getting a runny nose and a sore throat. Should I be concerned? Sorry if these seem like silly questions, it's just that I'm not getting any help from my Dr. except she keeps wanting to increase the antibiotic which I think is the WRONG thing to do. I'm hoping to get to the bookstore this weekend so I can do some research, but until then I just thought I'd ask. Thanks again for all of the support! I don't know what I would do if I hadn't found this group. Well, I know I probably wouldn't have the guts to continue this treatment! Hoping things turn around soon. To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Hanna,

Mostly it's a female disease..... well it affects more females than males depending on location....

I came a cross a doctor online (well read his interview with Shomon) I emailed him and we've been emailing ever since, he's got such great insight too bad he's to far away to treat me.... But he's been very supportive, I'm hope there are some on these lists but you never know....

About the medication... You should have some change in symptoms if you are being medicated properly..... They may need to change your levels.... What are you taking??

They can also add other things..... Some ppl are on Amour and then they also get Levoxyl... see what I mean?

Actually the diet thing is simple, you have to understand that as we as humans have evolved we have gotten really bad into the instant gratification thing and we eat the same way, we eat on the run, so our digestive systems no longer work properly, we eat crap that has so many additives that it'll still be around when we are dead and gone... The changing of the diet is something that EVERYONE should do..... if we went back to a simpler way of eating we probably would all be healthier and with less problems....

If you have already slowed down or damaged a part of your body...thru your own doing or the doing of some other factor, you have to heal that part of the body...... the thing with the thyroid is that it normally doesn't completely heal, thus you need meds sometimes for ever..... NOT always though.... IF you control the diet and the thyroid begins to function again, it is possible to just take natural amino's and thyroid support herbs and vitamins to keep it in check..... But Sometimes this is not possible.....

I personally wouldn't take Rogaine, with the meds, some b vitamins, tyrosine, and using a TRUE jojoba shampoo (from health food store) and using Jojoba oil on the scalp it is possible to stop the hair loss and cause regrowth......

I would go into all this further but I need to run.... Drop me an email and I will let you know what I've been going thru and what I'm doing now... as I have started self treatment.. I couldn't get what I needed, medication or Information wise from any medical source... MD or ND...... Also check out www.thyrodine.com The system is really good and I will most likely be starting it very soon...

Kathie

More questions

Here's some more (sorry) Is this mostly a female disease or does it affect men also? Are there doctors on this egroup? Learning and listening with us? I think what I can't understand most is why on earth I am taking a pill...... that is says my level is normal and i have to take it forever now....... but it isn't doing it's job? If it were doing it's job, why are all the symptoms still there for everyone making them have to change their diet now, take rogaine and all the additional things? Thanks, Hannah

[Guest guest]

>Is this mostly a female disease or does it affect men also?

Mostly women, but it does affect men.

>Are there doctors on this egroup? Learning and listening with us?

Don't know.

>I think what I can't understand most is why on earth I am taking a

>pill...... that is says my level is normal and i have to take it forever

>now....... but it isn't doing it's job?

Thyroid medication and dosage is highly patient-specific. A medication that

works great for one person will do nothing for another person and mess up a

third person. You may need a different medication. Or you may have an

adrenal problem.

Also, " normal " is a matter of interpretation. You may need a different

dose.

Finally, you have probably been hypo for awhile, and it takes awhile to

heal, even when you're on the right dose of the right medication.

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Hi ,

I know very little about these tests.

>1-Do we have to have a Dr order the liver enzymes and CBC tests?

Yes. A doctor HAS to order any tests you want done. You can also

have direct lab services order them for you--- in which case they

have a doctor who orders them. The labs are required to have a

doctors order. (I would not know what the results meant, either,

so I would NEED a doctor involved, myself.)

>2-if so, or not, does insurance pay for it?

Insurance will pay for it, maybe-- the usual caveats. They have

to first think that the diagnosis is something they cover and

then think the treatment is necessary or whatever. If you look

at your insurance plan summary it should tell you how much they

pay for tests. Many insurance plans actually pay a higher % for

tests than for other stuff. But, that is ONLY if they decide

to pay anything at all! (Which is iffy.) Trying to predict what

an insurance company will do is a poor idea IMO

>3-should we do these tests before chelating?

I don't know.

>4-what labs can we use for the urine tests?

I think people mostly use Great Smokies Diagnostic Lab. (Often

abbreviated as GSDL).

best,

Moria

[Guest guest]

,

Since the cause of AIH is unknown there is little people know... maybe why

you are not getting a response, we tend to each respond to questions we can

be helpful with. Sometimes peopls tend to show other immune system

disorders, such as the thyroid or arthritis. I am not familiar with the term

'hachimotos'. I don't think the bipolar or recovering alcholism would be

related, the cancers I don't know about. AIH is overactive immune ayatem, I

know peolpe are more susceptible to cancers when they have poor immune

systems, than again prednisone supresses the immune system...

Sorry , I don't know. We all seem to have multipe problems but they are

all over the place.

Maybe someone else can add their opinion.

Hang in there. I think you have your share of 'stuff'

Patty

[ ] More Questions

Sorry to take up so much bandwidth with all these questions. If my

questions seem based in ignorance, it is because they are based in

ignorance.

I am newly diagnosed and trying to get a handle on the bigger picture.

I am asking you these questions because none of the literature seems to

address these issues. Until I understand more fully the possible

interrelationships between diseases, I will not feel comfortable.

In the past 20 years, I have been treated for these problems:

endometrial cancer

colon cancer

colon cancer again

sober alcoholic (17 years)

hachimotos thryoditis

bi-polar

autoimmune hepatitis

Are any of these related in any way? Is there a hiredetary pattern? What

might be the next one on the list?

Thanks for you care, concern and knowledge.

[Guest guest]

Congrats on your sobriety. The 4th of this month, my daughter was 4 years sober! We are ever so happy for her! Plus, now she is getting married! So, congrats! It is difficult to stay sober! I am totally impressed!

Gosh, has your doctor tested you for genetic predisposition for cancers? Do your family members have any history of cancer that you can trace? Just wondering. My mom just died one month ago from Breast Cancer. All of her maternal aunts and uncles, grandparents and mother died of cancer. Her siblings are sill living but have only had heart trouble, not cancer...or any that they have mentioned. When I told my GI of the cancer that ran in the family, she wondered if some of the stomach cancers had been related to another autoimmune disease that I have....Guess I will never know now, since my mom was the only living link that I could test to see if her side had this other sutoimmune disease.

Good luck in your search.

debby

[ ] More Questions

Sorry to take up so much bandwidth with all these questions. If myquestions seem based in ignorance, it is because they are based inignorance.I am newly diagnosed and trying to get a handle on the bigger picture.I am asking you these questions because none of the literature seems toaddress these issues. Until I understand more fully the possibleinterrelationships between diseases, I will not feel comfortable.In the past 20 years, I have been treated for these problems: endometrial cancer colon cancer colon cancer again sober alcoholic (17 years) hachimotos thryoditis bi-polar autoimmune hepatitisAre any of these related in any way? Is there a hiredetary pattern? Whatmight be the next one on the list?Thanks for you care, concern and knowledge.

[Guest guest]

Do not know about some of those diseases but Hashimoto's is also

autoimmune as is AIH. Many people have more than one autoimmune

disease--in fact, I was told at a seminar that this is fairly common.

I also know that there is a 60 percent genetic probability for bi-

polar disease(not that it is autoimmune--don't know)but it is

inherited and tends to run in families. One of my adopted children

and her child both have it, as does her sister. It is quite a life

disrupting disease, my heart goes out to you. Jean

--- In @y..., " Giuliani " <lsdg@m...> wro

> Sorry to take up so much bandwidth with all these questions. If my

> questions seem based in ignorance, it is because they are based in

> ignorance.

>

> I am newly diagnosed and trying to get a handle on the bigger

picture.

>

> I am asking you these questions because none of the literature

seems to

> address these issues. Until I understand more fully the possible

> interrelationships between diseases, I will not feel comfortable.

>

> In the past 20 years, I have been treated for these problems:

>

> endometrial cancer

> colon cancer

> colon cancer again

> sober alcoholic (17 years)

> hachimotos thryoditis

> bi-polar

> autoimmune hepatitis

>

> Are any of these related in any way? Is there a hiredetary

pattern? What

> might be the next one on the list?

>

> Thanks for you care, concern and knowledge.

>

>

[Guest guest]

,

I have the exact same thing. The discovered I had cirrhosis last July.

The mental confusion is from the ammonia level, if it rises the more confused

we get, I have to limit my protein intake to 60 grams a day. And I have to

take medicine to have a bowel movement 3 times a day (which gets rid of the

protein which if stays in your body turns into ammonia).

You will also notice tremors with the rise in the ammonia level.

The backache is a side affect of the liver problem. All of my liver panels

are like yours, slightly elevated, but I stay tired and seem to catch every

bug people around me have, or I get what they call cellulitus, which is

infection under the skin.

I have been on the transplant list since September, I currently have a young

man from my church being tested for a possible live donor transplant. If he

passes the test next week, and his liver is healthy, they may do my

transplant the following week, April 23rd.

The problem I have is the wait . . . it drives me nuts some times.

I hope this has helped some.

Randy, VA

[Guest guest]

Hi ,

I'm a newly diagnosed patient with AIH, so I don't know if I can be

of very much help. One thing, from the research I have done is that

when you have cirrhosis you need to be on medication with predisone

to keep you from worsening. I think you should consult with your

doctor or get a second opinion. How did they determine you had

cirrhosis, from a biopsy? Anyway, keep asking questions, your health

depends on it.

God Bless,

Ruth

> Dear All:

>

> I really appreciate this group. Each person brings information and

a

> perspective that I would never be able to get from books.

>

> Now, some more questions:

>

> *I have had only marginally elevated liver enzymes. But, I

have cirrohsis,

> and diminished liver function. How can this happen with only

marginally

> elevated live enzymes?

>

> *I have not started on liver meds but have tremors, backache

and mental

> confusion (at times). Could the liver problems cause this?

>

> Thanks in advance for your answers.

>

> From Michigan

[Guest guest]

, My guess is that unless you are very very old you probably had high

enzymes for a while and they calmed down. I had cirrhosis 20 years ago when

the diagnosed me so my liver had been damaging itself for a while. I knew

when my enzymes were high, I would feel like I was hit by a truck, fatigue

was the biggest thing I felt, so I would call the Dr, he would order labs

then I had the labs done the day before I saw him. Waste of time to go in

without the labs. My numbers were up 100% of the time I thought they were.

For about 15 years I woul, end up on a 3-4 month tapering prednisone course,

stay off for about 3-4 months than start again. , collect & ask

questions

Patty

[ ] Re: More Questions

Hi ,

I'm a newly diagnosed patient with AIH, so I don't know if I can be

of very much help. One thing, from the research I have done is that

when you have cirrhosis you need to be on medication with predisone

to keep you from worsening. I think you should consult with your

doctor or get a second opinion. How did they determine you had

cirrhosis, from a biopsy? Anyway, keep asking questions, your health

depends on it.

God Bless,

Ruth

> Dear All:

>

> I really appreciate this group. Each person brings information and

a

> perspective that I would never be able to get from books.

>

> Now, some more questions:

>

> *I have had only marginally elevated liver enzymes. But, I

have cirrohsis,

> and diminished liver function. How can this happen with only

marginally

> elevated live enzymes?

>

> *I have not started on liver meds but have tremors, backache

and mental

> confusion (at times). Could the liver problems cause this?

>

> Thanks in advance for your answers.

>

> From Michigan

[Guest guest]

Hi ,

It's so strange that so many have brought up the tremors. My hands

shook so bad for about 2 yrs. before I was dx. I can't tell you how

many docs. I went to looking for answers. I'm a teacher and when I

would eat my lunch in the lounge people would comment on how much I

trembled. It was usually blamed on my diabetes which I would guess

didn't help it much. I was finally put on inderal and that along

with getting my liver under control has stopped it. The " brain fog "

was awful. I got to the point where I couldn't put a sentence

together. I think I posted more on that in an earlier post. I still

have it from time to time.

Debbie/FL

> Dear All:

>

> I really appreciate this group. Each person brings information and

a

> perspective that I would never be able to get from books.

>

> Now, some more questions:

>

> *I have had only marginally elevated liver enzymes. But, I

have cirrohsis,

> and diminished liver function. How can this happen with only

marginally

> elevated live enzymes?

>

> *I have not started on liver meds but have tremors, backache

and mental

> confusion (at times). Could the liver problems cause this?

>

> Thanks in advance for your answers.

>

> From Michigan

[Guest guest]

Re: [ ]intro and questions

> Hello Skyler

>

> I have been able to do physically demanding work without any real

problems.

> By the end of the work week I'm really wiped out though.

>

>

Thanks, that is reassuring. Ack! by the way, in the earlier remark about

itchy skin being a symptom...because I have that sometimes. Well, I have

not even been tested yet; my partner is the one who tested positivie in the

initial blood test. He has the second blood test, and I have the first

blood test, on May 8th. So I don't even know if I have it yet, but of

course now I think I have the symptoms of itchy skin and tiredness. (Am

something of a hypochondriac anyway!!)

So...for those of you who have it and had it discovered before getting the

major symptoms like jaundice and pain and so on...Did you all get put on

interferon? Am curious why some write that they are waiting for treatment.

I am thinking if I do have it, and have to take the interferon, I would ask

the doc if it would be safe to wait till around Christmastime to start the

treatment...so I would not miss work (gardening) if I had severe side

effects. Because getting the disease into remission is not going to help if

there is no money to buy groceries (am not exaggerating potential financial

crisis..our income is seasonal and we just lost a over a month's worth of my

dear spouse's income because of his heart attack). could take it

earlier, because he can do odd jobs to get us through the winter

financially. In other words, it would be better for us to not both start

treatment at the same time, because one of us has to be able to work...we

are self-employed with no sick leave and no savings. Have any of you waited

a few months (in my case, it would be about 7 months) to start treatment?

I realize I am jumping ahead since neither of us are fully diagnosed yet,

but I am a worrier and it helps to have information.

Thanks so much!

Skyler

[Guest guest]

Skyler, I started my treatment Peg-intron & ol in January. I am wiped out most of the time. But I have only missed work 2 days & left early "30 mintes to 90 mintes" 6 or 8 times. But I have not felt up to doing much around the house. Saving all of my energy for work, As far as waiting a few month's to start treatment. It will not make that much differance. I was told last year in April. But waiting for differant test & working with my HMO it took till January before starting my treatment. Plus there is now a waiting list to get on treatment Once your on treatment, your set for the year of treatment. I don't know how long the waiting list is, it might be 7 month's long. Just remember if you start aroud Christmas time you will be on treatment next summer. Treatment is 1 year long.

Will be praying for you.

Terry

tangly cottage gardening <tangly@...> wrote: Re: [ ]intro and questions> Hello Skyler>> I have been able to do physically demanding work without any realproblems.> By the end of the work week I'm really wiped out though.>> Thanks, that is reassuring. Ack! by the way, in the earlier remark aboutitchy skin being a symptom...because I have that sometimes. Well, I havenot even been tested yet; my partner is the one who tested positivie in theinitial blood test. He has the second blood test, and I have the firstblood test, on May 8th. So I don't even know if I have it yet, but ofcourse now I think I have the symptoms of itchy skin and tiredness. (Amsomething of a hypochondriac anyway!!)So...for those of you who have it and had it discovered before getting themajor symptoms like jaundice and pain and so on...Did you all get put oninterferon? Am curious why some write that they are waiting for treatment.I am thinking if I do have it, and have to take the interferon, I would askthe doc if it would be safe to wait till around Christmastime to start thetreatment...so I would not miss work (gardening) if I had severe sideeffects. Because getting the disease into remission is not going to help ifthere is no money to buy groceries (am not exaggerating potential financialcrisis..our income is seasonal and we just lost a over a month's worth of mydear spouse's income because of his heart attack). could take itearlier, because he can do odd jobs to get us through the winterfinancially. In other words, it would be better for us to not both starttreatment at the same time, because one of us has to be able to work...weare self-employed with no sick leave and no savings. Have any of you waiteda few months (in my case, it would be about 7 months) to start treatment?I realize I am jumping ahead since neither of us are fully diagnosed yet,but I am a worrier and it helps to have information.Thanks so much!Skyler

[Guest guest]

Hi skyler, Yes I have waited to do treatment until now

that the treatment is of a better form and

combination. My sister also has it and back about 4

years ago she was put on a study for interferon and it

did nothing for her so she is very hesitant about

going thru it again. She had a real hard time with

depression and being tired 24/7 plus she had to take

off work for 6 months or more .Her husband was working

thank god.I think thats why I never wanted to start

the treatment because of the side effects and also I

am self employed too ( cleaning business) with no

employees. so Now that the new treatment is out and

from what I've been hearing about it I'm going to do

it. Im saving my money as well just in case I wont be

able to work. I was diagnosed back in 1992 so it is

time to start thinking about getting better for a

healthy longer life ahead regardless of the sacrifices

that must be made Its my life thats in jepardy' Debbie

a.k.a. giglebutt

--- tangly cottage gardening <tangly@...>

wrote:

>

> Re: [ ]intro and

> questions

>

>

> > Hello Skyler

> >

> > I have been able to do physically demanding work

> without any real

> problems.

> > By the end of the work week I'm really wiped out

> though.

> >

> >

>

> Thanks, that is reassuring. Ack! by the way, in the

> earlier remark about

> itchy skin being a symptom...because I have that

> sometimes. Well, I have

> not even been tested yet; my partner is the one who

> tested positivie in the

> initial blood test. He has the second blood test,

> and I have the first

> blood test, on May 8th. So I don't even know if I

> have it yet, but of

> course now I think I have the symptoms of itchy skin

> and tiredness. (Am

> something of a hypochondriac anyway!!)

>

> So...for those of you who have it and had it

> discovered before getting the

> major symptoms like jaundice and pain and so

> on...Did you all get put on

> interferon? Am curious why some write that they are

> waiting for treatment.

> I am thinking if I do have it, and have to take the

> interferon, I would ask

> the doc if it would be safe to wait till around

> Christmastime to start the

> treatment...so I would not miss work (gardening) if

> I had severe side

> effects. Because getting the disease into remission

> is not going to help if

> there is no money to buy groceries (am not

> exaggerating potential financial

> crisis..our income is seasonal and we just lost a

> over a month's worth of my

> dear spouse's income because of his heart attack).

> could take it

> earlier, because he can do odd jobs to get us

> through the winter

> financially. In other words, it would be better for

> us to not both start

> treatment at the same time, because one of us has to

> be able to work...we

> are self-employed with no sick leave and no savings.

> Have any of you waited

> a few months (in my case, it would be about 7

> months) to start treatment?

>

> I realize I am jumping ahead since neither of us are

> fully diagnosed yet,

> but I am a worrier and it helps to have information.

>

> Thanks so much!

>

> Skyler

>

>

>

>

__________________________________________________

[Guest guest]

I chose to quit my job as a dental hygienist due to

liability issues as well as I didn't want to take a

chance of accidently passing this on. I do my shot on

Thursday night, so I have Friday and Saturday to

recover. I am able to raise my kids, cook, clean, do

yard work and I've built a pond with waterfall in my

backyard. I have some of the sides,the worst being

some really BAD headaches. I do as much as I can when

I can. There are times that I just get sick from this

stuff. I know a guy in another support group who is

still working and runs and works out several hours a

day. I think the healthier you are going into

treatment the better you do with sides. I've done 25

out of 48 weeks of treatment. Sometimes, I get

frustrated with the fact I can't run at 100% any more.

I had NO symptoms of hepc when I was diagnosed. It had

been there long enough to cause some scarring on the

liver though. I am very fortunate to have a STRONG

support system. Of course I only tell people on a need

to know basis or who I know will be supportive. So far

that has worked for me. It's not an easy treatment but

I intend to kick this dragon's butt. Good luck and if

you need to talk this is the right place.

Sharon

--- tangly cottage gardening <tangly@...>

wrote:

>

> Re: [ ]intro and

> questions

>

>

> > Hello Skyler

> >

> > I have been able to do physically demanding work

> without any real

> problems.

> > By the end of the work week I'm really wiped out

> though.

> >

> >

>

> Thanks, that is reassuring. Ack! by the way, in the

> earlier remark about

> itchy skin being a symptom...because I have that

> sometimes. Well, I have

> not even been tested yet; my partner is the one who

> tested positivie in the

> initial blood test. He has the second blood test,

> and I have the first

> blood test, on May 8th. So I don't even know if I

> have it yet, but of

> course now I think I have the symptoms of itchy skin

> and tiredness. (Am

> something of a hypochondriac anyway!!)

>

> So...for those of you who have it and had it

> discovered before getting the

> major symptoms like jaundice and pain and so

> on...Did you all get put on

> interferon? Am curious why some write that they are

> waiting for treatment.

> I am thinking if I do have it, and have to take the

> interferon, I would ask

> the doc if it would be safe to wait till around

> Christmastime to start the

> treatment...so I would not miss work (gardening) if

> I had severe side

> effects. Because getting the disease into remission

> is not going to help if

> there is no money to buy groceries (am not

> exaggerating potential financial

> crisis..our income is seasonal and we just lost a

> over a month's worth of my

> dear spouse's income because of his heart attack).

> could take it

> earlier, because he can do odd jobs to get us

> through the winter

> financially. In other words, it would be better for

> us to not both start

> treatment at the same time, because one of us has to

> be able to work...we

> are self-employed with no sick leave and no savings.

> Have any of you waited

> a few months (in my case, it would be about 7

> months) to start treatment?

>

> I realize I am jumping ahead since neither of us are

> fully diagnosed yet,

> but I am a worrier and it helps to have information.

>

> Thanks so much!

>

> Skyler

>

>

>

>

__________________________________________________

[Guest guest]

Dave let's just hope you are still undetectable in JUly...It would be great if there were no more signs wouldn't it??

[Guest guest]

The slow progression of the disease makes it entirely feasible to wait for treatment until a more convenient time. The sooner the treatment is undertaken, the better the chance for success, but we are talking years, rather than months. Most of us have had it a good 10 years before we realize it. I delayed my treatment several months because of a project line I had at work. I have completed my treatment and am currently undetectable. If I go back in July and they find it has returned, I still would intend to wait until year end, so as not to miss out on vacaction, biking and hiking this summer. -dz-

tangly cottage gardening <tangly@...> wrote: Re: [ ]intro and questions> Hello Skyler>> I have been able to do physically demanding work without any realproblems.> By the end of the work week I'm really wiped out though.>> Thanks, that is reassuring. Ack! by the way, in the earlier remark aboutitchy skin being a symptom...because I have that sometimes. Well, I havenot even been tested yet; my partner is the one who tested positivie in theinitial test. He has the second test, and I have the firstblood test, on May 8th. So I don't even know if I have it yet, but ofcourse now I think I have the symptoms of itchy skin and tiredness. (Amsomething of a hypochondriac anyway!!)So...for those of you who have it and had it discovered before getting themajor symptoms like jaundice and pain and so on...Did you all get put oninterferon? Am curious why some write that they are waiting for treatment.I am thinking if I do have it, and have to take the interferon, I would askthe doc if it would be safe to wait till around Christmastime to start thetreatment...so I would not miss work (gardening) if I had severe sideeffects. Because getting the disease into remission is not going to help ifthere is no money to buy groceries (am not exaggerating potential financialcrisis..our income is seasonal and we just lost a over a month's worth of mydear spouse's income because of his heart attack). could take itearlier, because he can do odd jobs to get us through the winterfinancially. In other words, it would be better for us to not both starttreatment at the same time, because one of us has to be able to work...weare self-employed with no sick leave and no savings. Have any of you waiteda few months (in my case, it would be about 7 months) to start treatment?I realize I am jumping ahead since neither of us are fully diagnosed yet,but I am a worrier and it helps to have information.Thanks so much!Skyler

[Guest guest]

Hi Skyler

I think that the reason some people are waiting to start treatment is due to

a shortage of the medication. The demand for the Peg interferon combo

treatment was greater that anticipated. Hepc is a very slow progressing

disease so there should not be to much of a problem with waiting to start

treatment. I know what you mean about the cost of treatment. If it wasn't

for the VA I wouldn't have been able to afford it myself.

Re: [ ]intro and questions

>

>

> > Hello Skyler

> >

> > I have been able to do physically demanding work without any real

> problems.

> > By the end of the work week I'm really wiped out though.

> >

> >

>

> Thanks, that is reassuring. Ack! by the way, in the earlier remark about

> itchy skin being a symptom...because I have that sometimes. Well, I have

> not even been tested yet; my partner is the one who tested positivie in

the

> initial blood test. He has the second blood test, and I have the first

> blood test, on May 8th. So I don't even know if I have it yet, but of

> course now I think I have the symptoms of itchy skin and tiredness. (Am

> something of a hypochondriac anyway!!)

>

> So...for those of you who have it and had it discovered before getting the

> major symptoms like jaundice and pain and so on...Did you all get put on

> interferon? Am curious why some write that they are waiting for

treatment.

> I am thinking if I do have it, and have to take the interferon, I would

ask

> the doc if it would be safe to wait till around Christmastime to start the

> treatment...so I would not miss work (gardening) if I had severe side

> effects. Because getting the disease into remission is not going to help

if

> there is no money to buy groceries (am not exaggerating potential

financial

> crisis..our income is seasonal and we just lost a over a month's worth of

my

> dear spouse's income because of his heart attack). could take it

> earlier, because he can do odd jobs to get us through the winter

> financially. In other words, it would be better for us to not both start

> treatment at the same time, because one of us has to be able to work...we

> are self-employed with no sick leave and no savings. Have any of you

waited

> a few months (in my case, it would be about 7 months) to start treatment?

>

> I realize I am jumping ahead since neither of us are fully diagnosed yet,

> but I am a worrier and it helps to have information.

>

> Thanks so much!

>

> Skyler

>

>

>

>

>

>