Newbie with Questions

[Guest guest]

Hi Group--I have been monitoring this group for a while learning. I

have had some sort of auto-immune disease for years, diagnosed as CFIDS,

FM, Universal Allergy Syndrome. etc. I am waiting on several tests I

just had done for mycoplasma. And am familiar with Dr. Garth Nicholson's

protocol.

Just got info from The Road Back Foundation. When reading the symptoms

for RA, they sound just like my CFIDS and FMS symptoms except that I

don't have swollen, hot joints. I do have a lot of knee and hip pain.

And I do have body-wide inflammation, I think. Every tissue, my gut

especially, burns. I pulled out tests I had done 4 years ago to check

for RA and Lupus. My SED rate was very low, RF and ANA were negative,

and RPR (which I don't what it is) was negative. I get sicker after I

eat--it's not an allergic response to specific foods, but rather it

seems to be an automatic immune response to putting anything in my

system.

So I have 2 sets of questions:

1. Is it possible to have RA or RA like illnesses without it showing up

on such tests? Could I have RA but tests don't always show it? (My

symptoms 4 years ago when I had the above tests were pretty bad).

2. Does my " burning " sound like " inflammation " ? Does anyone else have it

in their gut, muscles etc?

3. I doubt any doc will put me on anti-inflammatory (if that is what

this is) without positive test results, but I'm acutely miserable. Can

you all suggest some " natural " anti-inflammatories that make some

difference?

Thanks to all

Hope

New Mexico

PS: If I need to follow some topic guidelines for posting, please let me

know.

[Guest guest]

I have lupus and RA and don' t have a positive ANA or RF.Only abnormal

bloodwork is an elevated sed rate and some of my electrolytes are off from

time to time.I was also diagnosed with FMS.Hope that helps

Joanie

[Guest guest]

I'll try to answer your questions as best as I can, from my perspective:

1. You definitely can have RA without having a positive RF. There are

a number of types of RA that have all the symptoms but the blood tests

turn up negative. You need to find a doctor who will look at your

physical symptoms in conjunction with the blood tests and make an

assessment based on all the information, not just the tests. I know

what I'm talking about here because I have a type of RA but I've never

had a positive blood test yet.

2. I don't really know how to answer this. RA generally manifests as

swollen, stiff, sore joints, however, many patients have stomach

problems as well. As for inflamed muscles, I imagine if your joints are

sore, you could injure surrounding muscles and tissues because you move

differently when you can't use a joint properly, however, the primary

inflammation would be in the joints.

3. Some people have found help with bromelain, curcumin and ginger. I

think others have found boswellia to helpful. I personally didn't have

any success with them but each person is different so it's worth a try.

The main thing is to get a proper diagnosis of what you have and if it

is some sort of inflammatory illness, you should check out our website

and consider the antibiotic treatment that most of us are trying. It's

the same treatment as what the Road Back Foundation provides and many of

us are finding great success with it. This group can offer support and

guidance if you need it and I'd definitely recommend joining if you

decide to pursue this treatment because these folks are a wealth of

information and help. Good luck and I hope you get a diagnosis soon.

a

Hess wrote:

>

> From: " Hess " <krhess@...>

>

> Hi Group--I have been monitoring this group for a while learning. I

> have had some sort of auto-immune disease for years, diagnosed as CFIDS,

> FM, Universal Allergy Syndrome. etc. I am waiting on several tests I

> just had done for mycoplasma. And am familiar with Dr. Garth Nicholson's

> protocol.

>

> Just got info from The Road Back Foundation. When reading the symptoms

> for RA, they sound just like my CFIDS and FMS symptoms except that I

> don't have swollen, hot joints. I do have a lot of knee and hip pain.

> And I do have body-wide inflammation, I think. Every tissue, my gut

> especially, burns. I pulled out tests I had done 4 years ago to check

> for RA and Lupus. My SED rate was very low, RF and ANA were negative,

> and RPR (which I don't what it is) was negative. I get sicker after I

> eat--it's not an allergic response to specific foods, but rather it

> seems to be an automatic immune response to putting anything in my

> system.

>

> So I have 2 sets of questions:

>

> 1. Is it possible to have RA or RA like illnesses without it showing up

> on such tests? Could I have RA but tests don't always show it? (My

> symptoms 4 years ago when I had the above tests were pretty bad).

>

> 2. Does my " burning " sound like " inflammation " ? Does anyone else have it

> in their gut, muscles etc?

>

> 3. I doubt any doc will put me on anti-inflammatory (if that is what

> this is) without positive test results, but I'm acutely miserable. Can

> you all suggest some " natural " anti-inflammatories that make some

> difference?

>

> Thanks to all

>

> Hope

> New Mexico

>

> PS: If I need to follow some topic guidelines for posting, please let me

> know.

>

> ---------------------------

[Guest guest]

Hess wrote:

>

> So I have 2 sets of questions:

>

> 1. Is it possible to have RA or RA like illnesses without it showing up

> on such tests? Could I have RA but tests don't always show it? (My

> symptoms 4 years ago when I had the above tests were pretty bad).

Yes

> 2. Does my " burning " sound like " inflammation " ? Does anyone else have it

> in their gut, muscles etc?

Maybe

> 3. I doubt any doc will put me on anti-inflammatory (if that is what

Out of maybe 3 million docs, probably 2,999,850 will put you on

antiinflamms' even up to Prednisone without any tests.

> this is) without positive test results, but I'm acutely miserable. Can

> you all suggest some " natural " anti-inflammatories that make some

> difference?

A few have decent luck with bromelian or curcumin. For RA roughly 8 out

of 10 have very good results with RA SPES. Problem is in knowing what is

going on with you, whether you have FM or some other misery

> Thanks to all

>

> Hope

> New Mexico

>

> PS: If I need to follow some topic guidelines for posting, please let me

> know.

Just try not to yell.

--

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]

Hess wrote:

>

> So I have 2 sets of questions:

>

> 1. Is it possible to have RA or RA like illnesses without it showing up

> on such tests? Could I have RA but tests don't always show it? (My

> symptoms 4 years ago when I had the above tests were pretty bad).

Yes

> 2. Does my " burning " sound like " inflammation " ? Does anyone else have it

> in their gut, muscles etc?

Maybe

> 3. I doubt any doc will put me on anti-inflammatory (if that is what

Out of maybe 3 million docs, probably 2,999,850 will put you on

antiinflamms' even up to Prednisone without any tests.

> this is) without positive test results, but I'm acutely miserable. Can

> you all suggest some " natural " anti-inflammatories that make some

> difference?

A few have decent luck with bromelian or curcumin. For RA roughly 8 out

of 10 have very good results with RA SPES. Problem is in knowing what is

going on with you, whether you have FM or some other misery

> Thanks to all

>

> Hope

> New Mexico

>

> PS: If I need to follow some topic guidelines for posting, please let me

> know.

Just try not to yell.

--

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]

Dr. Brown said if we could treat RA when the first symptom of fatigue showed

up with minocycline we would snuff out the disease much more effectively.

So....I wouldn't wait for the test to show positive RA factors etc.

Donna

Ottawa, Canada

Scleroderma, Jan.95, AP Oct.97

(My Story) www3.sympatico.ca/mousepotatoes

rheumatic Re: Newbie with Questions

>From: " Hess " <krhess@...>

>

>Hi Group--I have been monitoring this group for a while learning. I

>have had some sort of auto-immune disease for years, diagnosed as CFIDS,

>FM, Universal Allergy Syndrome. etc. I am waiting on several tests I

>just had done for mycoplasma. And am familiar with Dr. Garth Nicholson's

>protocol.

>

>Just got info from The Road Back Foundation. When reading the symptoms

>for RA, they sound just like my CFIDS and FMS symptoms except that I

>don't have swollen, hot joints. I do have a lot of knee and hip pain.

>And I do have body-wide inflammation, I think. Every tissue, my gut

>especially, burns. I pulled out tests I had done 4 years ago to check

>for RA and Lupus. My SED rate was very low, RF and ANA were negative,

>and RPR (which I don't what it is) was negative. I get sicker after I

>eat--it's not an allergic response to specific foods, but rather it

>seems to be an automatic immune response to putting anything in my

>system.

>

>So I have 2 sets of questions:

>

>1. Is it possible to have RA or RA like illnesses without it showing up

>on such tests? Could I have RA but tests don't always show it? (My

>symptoms 4 years ago when I had the above tests were pretty bad).

>

>2. Does my " burning " sound like " inflammation " ? Does anyone else have it

>in their gut, muscles etc?

>

>3. I doubt any doc will put me on anti-inflammatory (if that is what

>this is) without positive test results, but I'm acutely miserable. Can

>you all suggest some " natural " anti-inflammatories that make some

>difference?

>

>Thanks to all

>

>Hope

>New Mexico

>

>PS: If I need to follow some topic guidelines for posting, please let me

>know.

>

>

>---------------------------

[Guest guest]

>>

>

>So I have 2 sets of questions:

>

>1. Is it possible to have RA or RA like illnesses without it showing up

>on such tests? Could I have RA but tests don't always show it? (My

>symptoms 4 years ago when I had the above tests were pretty bad).

My wife, Skip, tests didn't show anything for 3 years.

>2. Does my " burning " sound like " inflammation " ? Does anyone else have it

>in their gut, muscles etc?

In the beginning Skip's biggest complaint was a burning sensation in the

muscles. It then moved to the joints. As for the burning in the stomach --

Are you taking a lot of painkillers such as ibuprofen or naprosen? These can

burn a hole in your stomach.

>3. I doubt any doc will put me on anti-inflammatory (if that is what

>this is) without positive test results, but I'm acutely miserable. Can

>you all suggest some " natural " anti-inflammatories that make some

>difference?

First-- Get a second opinion. We horsed around with a local rheumatologist

for three years and got nowhere. One trip to the Mayo Clinic for three days

got a diagnosis and some answers. One answered prayer got us into the

rheumatic.org website and 12 months later the first improvements in 11

years.

Second -- You can try Boswellia, 325mg/cap ,a natural anti-inflammatory for

the inflammation. I used it for a while with pretty good results. Skip has

used DL-Phenylalanine,500mg/cap for pain. Both available at the

vitaminshoppe.com

I'm sure the group will have more ideas. Good Luck

Denny and Skip

RA 11 yrs

AP 12 months

>Thanks to all

>

>Hope

>New Mexico

>

>PS: If I need to follow some topic guidelines for posting, please let me

>know.

>

>

>---------------------------

[Guest guest]

Hi (is Hope your name or the city in NM?)

I'm just now starting to go through the mail that has piled up in my box for

weeks. Your post caught my eye because you mention many things that I have

been through.

First and foremost is the fibromyalgia/CFIDS diagnosis verus it really being a

form of arthritis. I spent 6 years being diagnosed with fibromyalgia by 4-5

separate doctors. About a year ago, my latest physican and only

rheumatologist, realized that my pains were not consistent with FM. He changed

my diagnosis to spondyloarthritis, which has now been 90% narrowed down

ankylosing spondylitis.

Your comment about FM/CFIDS symptoms being virtually identical to the RA (and

other arthrides) is true and can be very confusing. It made me very angry to

realize I had been treated improperly by multitudes of doctors for many years

because the fad of the day is to say everyone with a difficult to diagnose

case has FM/CFIDS. I spent the first 3-4 years of that raising hell that their

diagnosis was wrong and that they needed to be more thorough and run more

tests. I was ignored and treated more than shabbily by the docs. Although I

had most of the FM symptoms, never did I conform as an ordinary FM patient in

either the pattern of my pain or its treatment. Four specific points were:

1. NSAIDs were effective.

2. Cortisone injections were effective.

3. My symptoms relevant to the pain in the my joints was progressive. I have

75% of the other FM symptoms (I had almost all of them) under control, mostly

through medications or just plain time passing.

4. The pain, while not in the joint per se, was in all of the muscle/ligament

insertion points into the joints.

These are all very counter to FM. They are classic for arthritis, and the

insertion point pain is classic for spondyloarthritis.

I have never had a positive blood test for anything, but then I also have not

been checked in about 5 years. The one five years ago was primarily just a CBC

and thyroid test. The abnormalities that were found at the time of onset were

primarily with my white blood cell count. It was very elevated, with one

particular type the only one elevated. I also have one blood test saying my

RBCs were abnormally shaped. Again, that's about 6 years ago. It's been 7

years since any blood work looking for RA, Lyme, etc.. Except for my SED rate

and CBC/differential, I've never had any of the bloodwork discussed on this

board and in The Roadback used to follow the progress of my disorder. Oh, I

also had my sed rate drop from 10 to 5 in the first year. Very low as you say.

I haven't a clue what it is these days.

I had a lot of stomach and intestinal problems early on, but they are gone

now. Also, have several years on NSAIDs, I had the burning stomach problem.

It's possible your gut problems are a result of drugs. Mine cleared up when I

went off the NSAIDs. I do still use them a few times a week but am very

careful with them.

There are several websites I would suggest you turn to while trying to figure

out what's going on. The first is the RISG board. It has links to an

unbelievable number of articles on every form of arthritis imaginable. The url

is:

http://www.risg.org/research/risglk/risglk.htm

An article on the seronegative arthrides is also a good read. I hope you have

some level of medical terminology. This particular article has been useful to

some of us in distinguishing rheumatoid arthritis from the spondyloarthopies.

That url is:

http://www.medscape.com/4181.rhtml

A recent article that one of our members posted the website for talks about

inflammation and using its pattern to distinguish what disease is involved.

The web site address is:

http://www.orthop.washington.edu/Arthriti/Joint_Pn.html

The following quote from this article is what really caught my eye. There

apparently is a fairly precise pattern to how the pain manifests itself

relative to the different disorders.

> Differentiation of these problems from an arthritis requires careful physical

examination which should

> include:

>

> 1.Inspection of the joint area for evidence of swelling or redness

> 2.Passive range of motion of the joint(s) in the area noting pain,

reduction of motion, or instability

> 3.Active range of motion of the joint(s) in the area noting pain that was

not there when the joint(s) were

> passively moved

> 4.Resisted range of motion of the joint(s) in the area again noting pain

> 5.Palpation of the joint line(s) and surrounding structures noting

tenderness, joint effusion(s), and boney

> changes. Most soft tissue problems do not hurt with passive motion while

most forms of arthritis do.

> Tendonitis is typically painful with active or resisted motion. A

bursitis is usually painful only with

> palpation. Myofacial pain is also painful to palpation and may be

widespread as in fibromyalgia.

>

Hope some of this information helps you.

Best - Jan K

> Hess wrote:

> >

> > From: " Hess " <krhess@...>

> >

> > Hi Group--I have been monitoring this group for a while learning. I

> > have had some sort of auto-immune disease for years, diagnosed as CFIDS,

> > FM, Universal Allergy Syndrome. etc. I am waiting on several tests I

> > just had done for mycoplasma. And am familiar with Dr. Garth Nicholson's

> > protocol.

> >

> > Just got info from The Road Back Foundation. When reading the symptoms

> > for RA, they sound just like my CFIDS and FMS symptoms except that I

> > don't have swollen, hot joints. I do have a lot of knee and hip pain.

> > And I do have body-wide inflammation, I think. Every tissue, my gut

> > especially, burns. I pulled out tests I had done 4 years ago to check

> > for RA and Lupus. My SED rate was very low, RF and ANA were negative,

> > and RPR (which I don't what it is) was negative. I get sicker after I

> > eat--it's not an allergic response to specific foods, but rather it

> > seems to be an automatic immune response to putting anything in my

> > system.

> >

> > So I have 2 sets of questions:

> >

> > 1. Is it possible to have RA or RA like illnesses without it showing up

> > on such tests? Could I have RA but tests don't always show it? (My

> > symptoms 4 years ago when I had the above tests were pretty bad).

> >

> > 2. Does my " burning " sound like " inflammation " ? Does anyone else have it

> > in their gut, muscles etc?

> >

> > 3. I doubt any doc will put me on anti-inflammatory (if that is what

> > this is) without positive test results, but I'm acutely miserable. Can

> > you all suggest some " natural " anti-inflammatories that make some

> > difference?

> >

> > Thanks to all

> >

> > Hope

> > New Mexico

> >

> > PS: If I need to follow some topic guidelines for posting, please let me

> > know.

> >

> > ---------------------------

[Guest guest]

Hi,

You didn't sign your message, but I'm assuming by your e-mail address that

your name is Lora.???

Yes, it's possible to cure candida on your own. In fact, it's what most of

us are trying to do and the lack of information and doctors who will treat it

is what takes so long for most of us because it's all trial and error. The

key is diet and supplements. The supplements that you can get in a health

store are just as good or better than the prescriptions you can get from a

doctor so you really don't need doctors to cure this. All you need is a lot

of knowledge (which we share here) and a lot of will power (which we support

here). Welcome to the list.

I'm not sure why you wanted to know if there were any postmenopausal women on

the list. That has nothing to do with candida. I've traced my candida

problems back to the age of about 15 after taking some antibiotics for strep

throat, I believe (and drinking A LOT of beer at that time in my life). I'm

almost 32 now and just discovered what the problem was a few years ago. I'm

currently working on getting more knowledge because my past attempts to cure

the candida failed (improper diet even when I thought I was doing it right).

I will be doing some experiments with yeast and then beginning the diet next

month. I'm planning to plan my die-off during my vacation after X-mas so

Christmas will be a yeast-free, sugar-free one for me.

~

In a message dated 11/21/00 12:20:43 PM Central Standard Time,

Lora715@... writes:

<< Hello, I'm so glad I found you!! Are there any postmenopausal ladies here.

? I am 60 +. For about the past 6 wks I've had heartburn & other burning

sensations, scalp , inner elbows, feet, felling like I ate hot peppers when

defecating. Foul smelling gas & stool.Have had complete physical & upper GI.

Everything checks out normal !!I have done a lot of searching, web & mind !!

Things started not being quite right after attempting HRt 3 yrsago. Had to

discontinue because of bad side affects. I got vaginal yeast & UTI &

abdominal pain. Symptoms abated after I stopped meds but shortly after I

noticed anal burning & the feeling something wasn't quite right in my

intestines.Sorta limped along, literally, had hip pain & found I have

osteoporosis.About 6 mos ago I started having sensitivity to foods, orange

juice & spicy foods, etc. This escalated until I am having heartburn from

most everything & not just heartburn but heat in my whole digestive track.I

thought of candida a while back but since it is such a restrictive diet,

pushed it back!! Prilosec & antacids don't help.I'm laying off sugar which is

already helping !! Can a person handle candida on their own ?? Sorry , if

too long & boring but I wanted to get the whole story out

>>

[Guest guest]

In a message dated 11/03/2001 8:37:16 PM Central Standard Time,

TwoTonks@... writes:

> I suspect my 4-year-old son has yeast overgrowth, but three stool

> samples have come back with no yeast present, which has pretty much

> assured my son's doctor that yeast is not a problem

Sometimes those with the worst cases of yeast overgrowth have stool tests

that come back negative for such. (Another type of test is a live blood

anaylysis.) My doctor told me that a blood test will show just how much

yeast is still in the system, and then she ordered a liver test for me...on

the lab order I noticed that she had written something about candida on the

instructions. Given our conversation, and that part on the lab requisition

form, I am assuming this test will reveal my candida situation. BTW, I also

had the Great Smokies stool test and it came back with a 4+ in candida.

[Guest guest]

Debbie i never heard of this diet, what is it? Mog

[Guest guest]

In a message dated 11/4/01 6:47:41 AM Central Standard Time, mogdrmom@...

writes:

> Debbie i never heard of this diet, what is it? Mog

>

My son has multiple food allergies, which may be because of leaky gut, yeast,

bacterial overgrowth, mercury poisoning thru vaccines, genetic

predisposition, take your pick. A urine test showed that he improperly and

incompletely breaks down casein (the protein in milk) and gluten (the protein

in wheat, oats, rye, barley and most grains) into opiate-like substances

which are absorbed into the bloodstream and affect the brain. This is a very

common finding in autistic children and is a hot topic of research in that

field. Many autistic children find great improvement after using the

gluten-free casein-free diet. Unfortunately, it hasn't seemed to make much

difference with my son.

Believe me, this isn't a diet you want to try just for the fun of it!

Luckily, there are son new digestive enzymes which help to break down casein

and gluten, and we're starting with them, hopefully so we won't have to be on

this diet any more.

Debbie

[Guest guest]

Hi Ann and ,

I can relate to your situation. I went to doctor after doctor with my

grandson and finally found a nutritionist that was able to help. This doctor

is also a chiropractor. My grandson had many tests done including MRI, EEG,

blood tests, urine tests and the neurosurgeon said he was PDDNOS and to go

home and love him. All the tests results were normal. This man told me

there was nothing that could be done. I learned of the nutritionist through

a friend who has a friend with a son recovered from autism. I talked with

her and learned what she had done with her son to recover him. So, I now

drive 6 1/2 hours every six weeks to see this doctor. Don't let anyone tell

you that diet and supplements do not help. My grandson has been off dairy

and refined sugar for 22 months and off of soy for 4 months. He takes many

supplements. He is not fully recovered yet but I am convinced he will be.

He will be 5 years old next month. The progress in the last two years have

been great. So, yes, I would see a doctor that knows a lot about nutrition.

You also need to check for heavy metal toxicity. That is something we are

working on at this time. Good luck and I can assure you things will improve.

Ann

[Guest guest]

Pam,

Hello and welcome to the ER O discussion group. We are always glad to answer

any questions we can.

1. Use 1/4 cup more water or that much less flour when using Spelt.

2. If you are grinding your own spelt it will probably be more like the dark

spelt, like whole wheat is to white wheat flour. I think I remember someone

mentioning that it makes a denser product, so you might want to get the more

refined white spelt for cooking cakes and biscuits and pie crusts.

I hope this helps.

newbie with questions

> Hi, I am brand new at this and have some questions. Can I use spelt flour

in the same amount as regular recipes call for regular white flour? Has

anyone ground whole spelt to make flour? Can't the webmaster kick that

person offering porn off the site? Pam

>

>

>

[Guest guest]

& Pam ---

I'm not knowledgeable about making BREAD with spelt flour, but in my

experience, when using 'white spelt' for PASTRIES, I use 1/4 cup MORE

than regular wheat flour. Had read this on previous posts and it has

worked well for me. Wanda

[Guest guest]

Can't help you with the cornbread since we aren't on the diet, but

the cracking I would guess is yeast. Several people have mentioned

this problem and I believe you can use a topical yeast medication. HTH

---

In , " Melinda Dixon "

<meldixon219@y...> wrote:

> Hi all!

>

> What a great group of people!

>

> Most of my questions are answered in the book or on this board, but

> do have 2 questions:

>

> Any idea what enzyme deficiency might be behind my son's fingers

> cracking open and bleeding 3-5 times each year for a period of

about

> 2 weeks each time? Nothing else has helped and am hoping enzymes

> might help, couldn't hurt.

>

> Any good flourless recipe for cornbread?

>

> thanks so much,

>

> Melinda

[Guest guest]

>>> Any idea what enzyme deficiency might be behind my son's fingers

>>> cracking open and bleeding 3-5 times each year for a period of

about 2 weeks each time?

Maybe essential fatty acids? or other nutrient deficiency? If so,

enzymes may help the nutrients you are eating, or supplements you

are taking, more absorbed.

>>>Any good flourless recipe for cornbread?

What flours are you avoiding specifically? Are you including corn

flour in this? I don't mean this to be a dorky question. Some people

avoid corn along with gluten-derived flours. Or rice flour too.

.

[Guest guest]

When you find the answer to the finger cracking thing, I'd love to hear

it. This happens to my husband EVERY year without fail starting in the

fall. I know for him, it has to do with dry skin and working with water

in the winter but after all these years we've yet to find something that

works to stop this from happening.

Rhonda

Olivia's mom

[Guest guest]

Wow! What a great group! Thanks for all of the input and I can tell

that there really is alot of " support " in this group.

If I do need to start treatment, at least I have the ability to

telecommute if I need to. It would be great if I could still be able

to work. I am probably getting ahead of myself, as maybe I won't

need to go on any treatment... Do Dr's usually " recommend "

treatment, or is that really something that is going to be up to me

(which I know ultimately is anyway)? I mean, I feel fine, at least

for now... I don't drink or do drugs etc. But I am only 41 years old

and figure I have probably had this for 18 - 20 years (maybe more).

I feel fine now, and I am sure treatment will have at least " some "

negative impact on my life so of course I want to avoid it! But

maybe it's best to bite the bullet and try to make myself fully

healthy. Well I am sure it is a hard decision that everyone has to

make and I will just need to wait and see what the Gastroenterolist

says next month.

Thanks again -- Vickie

> > Hi, I am new to this group, but not new to this disease. I found

> out

> > in early 1999 that I have Hep-C and figure at that point I had it

> for

> > at least 15 years. I have had tests fairly regularly and for the

> > most part my results have been pretty consistent with not alot of

> > change. My AST/ALT levels have looked like this (starting with

> > 1999) -- 25/45, 26/45, 30/42, 45/55 (in 2002), and now it is

> 121/224

> > which is quite a big leap from last years test!! My viral load

> > jumped from 281,000 copies in 2002 to 1,690,000 copies this

year.

> > Needless to say I am a bit worried. I had a biopsy done in 2000

> and

> > things looked good then, but also in 2000 everything was

still " in

> > range " . I am going to see a gastroenterologist again to see

what's

> > up with this. I hope this HCV isn't finally " kicking in " and

> > progressing more quickly now. Any thoughts from any other

members

> > that are more knowledgeable than me? My Genotype is 3a. I

really

> > don't want to do " treatment " as I am so worried it will make

things

> > worse. But maybe I need to consider it now. I can't wait until

I

> > have my appt. with the specialist.

> >

> > Thanks,

> > Vickie

> >

> >

[Guest guest]

Vickie-

I have a very high viral load, ALT and AST in the low to mid 60s and

no liver chirosis [sp.?] or fibrosis. The gastroenterologist told me

that I could take treatment and that it would probably knock the

virus out of my system but didn't recommend it...at least not at the

time I saw him, which was a few months ago. He told me that there

might be new drugs down the line with fewer sides. There seems to be

lots of research using protease inhibitors for HCV. BTW, I do take

milk thistle as well as anti-oxident vitamins.

I hope your doctor tells you that you don't need treatment at this

time either, other than the usual trying to maintain good eating

habits.

Lou [with his cats Bella and Sammy F.C. in cool but sunny San

Francisco]

> I am probably getting ahead of myself, as maybe I won't

> need to go on any treatment... Do Dr's usually " recommend "

> treatment, or is that really something that is going to be up to me

> (which I know ultimately is anyway)? I mean, I feel fine, at least

> for now... I don't drink or do drugs etc. But I am only 41 years

old

> and figure I have probably had this for 18 - 20 years (maybe

more).

> I feel fine now, and I am sure treatment will have at least " some "

> negative impact on my life so of course I want to avoid it! But

> maybe it's best to bite the bullet and try to make myself fully

> healthy. Well I am sure it is a hard decision that everyone has to

> make and I will just need to wait and see what the Gastroenterolist

> says next month.

[Guest guest]

We're all different Vickie. I've had Hep C since 1989, although I only found out a few years ago. Unfortunately, mine worsened very quickly, and when I had my liver biopsy, I was already Stage 4 cirrhosis. My gastro didn't say I had to have treatment, he just said he thought I would benefit from it. Mainly, even tho they can't make the liver better, hopefully it will deter liver cancer. I'm starting treatment in 3 days. Fortunately, I'm retired so I don't have to worry about working. But I'm also older and not as likely to respond as some of the younger people in the group. I would think your doctor would probably recommend another liver biopsy at this point.

C

[ ] Re: Newbie with questions

Wow! What a great group! Thanks for all of the input and I can tell that there really is alot of "support" in this group. If I do need to start treatment, at least I have the ability to telecommute if I need to. It would be great if I could still be able to work. I am probably getting ahead of myself, as maybe I won't need to go on any treatment... Do Dr's usually "recommend" treatment, or is that really something that is going to be up to me (which I know ultimately is anyway)? I mean, I feel fine, at least for now... I don't drink or do drugs etc. But I am only 41 years old and figure I have probably had this for 18 - 20 years (maybe more). I feel fine now, and I am sure treatment will have at least "some" negative impact on my life so of course I want to avoid it! But maybe it's best to bite the bullet and try to make myself fully healthy. Well I am sure it is a hard decision that everyone has to make and I will just need to wait and see what the Gastroenterolist says next month.Thanks again -- Vickie> > Hi, I am new to this group, but not new to this disease. I found > out > > in early 1999 that I have Hep-C and figure at that point I had it > for > > at least 15 years. I have had tests fairly regularly and for the > > most part my results have been pretty consistent with not alot of > > change. My AST/ALT levels have looked like this (starting with > > 1999) -- 25/45, 26/45, 30/42, 45/55 (in 2002), and now it is > 121/224 > > which is quite a big leap from last years test!! My viral load > > jumped from 281,000 copies in 2002 to 1,690,000 copies this year. > > Needless to say I am a bit worried. I had a biopsy done in 2000 > and > > things looked good then, but also in 2000 everything was still "in > > range". I am going to see a gastroenterologist again to see what's > > up with this. I hope this HCV isn't finally "kicking in" and > > progressing more quickly now. Any thoughts from any other members > > that are more knowledgeable than me? My Genotype is 3a. I really > > don't want to do "treatment" as I am so worried it will make things > > worse. But maybe I need to consider it now. I can't wait until I > > have my appt. with the specialist.> > > > Thanks,> > Vickie> > > >

[Guest guest]

Generally they will recommend the treatment unless there are other health concerns that would make the treatment more difficult. The sooner the treatment is undertaken, the better the odds of success are. Being able to telecommute is a big plus on your side. It's difficult when you feel well, but by the time you start feeling ill with hepatitis you are in the advanced stages of the disease. The other reason treatment might not be recommended or you might decide on your own to wait is if there is a promising new treatment about to be approved. -dz-Vickie Payne <vickiepayne@...> wrote:

Wow! What a great group! Thanks for all of the input and I can tell that there really is alot of "support" in this group. If I do need to start treatment, at least I have the ability to telecommute if I need to. It would be great if I could still be able to work. I am probably getting ahead of myself, as maybe I won't need to go on any treatment... Do Dr's usually "recommend" treatment, or is that really something that is going to be up to me (which I know ultimately is anyway)? I mean, I feel fine, at least for now... I don't drink or do drugs etc. But I am only 41 years old and figure I have probably had this for 18 - 20 years (maybe more). I feel fine now, and I am sure treatment will have at least "some" negative impact on my life so of course I want to avoid it! But maybe

it's best to bite the bullet and try to make myself fully healthy. Well I am sure it is a hard decision that everyone has to make and I will just need to wait and see what the Gastroenterolist says next month.Thanks again -- Vickie> > Hi, I am new to this group, but not new to this disease. I found > out > > in early 1999 that I have Hep-C and figure at that point I had it > for > > at least 15 years. I have had tests fairly regularly and for the > > most part my results have been pretty consistent with not alot of > > change. My AST/ALT levels have looked like this (starting with > > 1999) -- 25/45, 26/45, 30/42, 45/55 (in 2002), and now

it is > 121/224 > > which is quite a big leap from last years test!! My viral load > > jumped from 281,000 copies in 2002 to 1,690,000 copies this year. > > Needless to say I am a bit worried. I had a biopsy done in 2000 > and > > things looked good then, but also in 2000 everything was still "in > > range". I am going to see a gastroenterologist again to see what's > > up with this. I hope this HCV isn't finally "kicking in" and > > progressing more quickly now. Any thoughts from any other members > > that are more knowledgeable than me? My Genotype is 3a. I really > > don't want to do "treatment" as I am so worried it will make things > > worse. But maybe I need to consider it now. I can't wait until I > > have my appt. with the specialist.> > > >

Thanks,> > Vickie> > > >

[Guest guest]

My alt/ast levels were around where yours are now for many years. At that time (from 1981-1996) they never thought to go any further than mention that they were a little high. They had me come in and retest a couple of times, but when I still tested as high nothing more was done. They didn't know much about hcv at that time. I wouldn't expect that the treatment would make thing worse, at least as far as your liver goes. It may not be much fun, but maybe it's time to consider it. Don't worry about it too much, wait and see your specialist and see what he/she says about it. Keep us posted and we'll walk through this one step at a time with you. -dz-Vickie Payne <vickiepayne@...> wrote:

Hi, I am new to this group, but not new to this disease. I found out in early 1999 that I have Hep-C and figure at that point I had it for at least 15 years. I have had tests fairly regularly and for the most part my results have been pretty consistent with not alot of change. My AST/ALT levels have looked like this (starting with 1999) -- 25/45, 26/45, 30/42, 45/55 (in 2002), and now it is 121/224 which is quite a big leap from last years test!! My viral load jumped from 281,000 copies in 2002 to 1,690,000 copies this year. Needless to say I am a bit worried. I had a biopsy done in 2000 and things looked good then, but also in 2000 everything was still "in range". I am going to see a gastroenterologist again to see what's up with this. I hope this HCV isn't finally "kicking in" and

progressing more quickly now. Any thoughts from any other members that are more knowledgeable than me? My Genotype is 3a. I really don't want to do "treatment" as I am so worried it will make things worse. But maybe I need to consider it now. I can't wait until I have my appt. with the specialist.Thanks,Vickie

[Guest guest]

Hello Vickie,

I am fairly new to this group also, but I had to write as we had some things in common. I was just diagnosed Sept 17th this year, I on the other hand have only had mine about 2 years. I am 39 years young, and a very active person. I had a biopsy and I am stage 1 fibrosis, with very little scarring, geno type 1b, hardest to respond to tx. However, I have made the decision to start tx Dec 2nd. Yes, I am very scared of what it might do to my lifestyle, slowing me down of course, however I am already having aches and pains and feel constantly fatigued. I know I only have maybe a 50 percent chance if that , that I will respond, so my Herpetologist tells me. But my perspective is this, I want to give my body every fighting chance I have available , especially NOW while I am healthy. If I waited until things got worse, I may not do as well with the tx. and even though there is a great possibility that I will

feel AWFUL, to say the least, while on the tx for 48 weeks -- it's a chance I am sooooooooo willing to take in hope (and faith) that I will respond and become totally healthy again and back to myself.

Unfortunately, this is the only treatment out there for us, although there is others becoming available in our future it looks like. And If I do not respond to treatment, well I will have least slowed the dragon down while waiting for the next ...

Yes, you have a got a big decision to make, and it is one to be carefully considered, however your Doctor, if knowledgeable, should have some very good advice for you. I am with the Mayo Clinic, which is on of the best in the States, and I put allot of trust in what these Docs recommend, so off I go to the races.........................

And I put allot of Faith in my God too....................

I wish you the best of luck, and know that you are in a very good place here, I couldn't't make it without my hepper friends, they are the best................

Keep us informed.....and don't feel afraid to ask anything...

Lots of Hugs & Prayers go out to youDave <dhz920@...> wrote:

Generally they will recommend the treatment unless there are other health concerns that would make the treatment more difficult. The sooner the treatment is undertaken, the better the odds of success are. Being able to telecommute is a big plus on your side. It's difficult when you feel well, but by the time you start feeling ill with hepatitis you are in the advanced stages of the disease. The other reason treatment might not be recommended or you might decide on your own to wait is if there is a promising new treatment about to be approved. -dz-Vickie Payne <vickiepayne@...> wrote: Wow! What a great group! Thanks for all of the input and I can tell that there really is alot of "support" in this group. If I do need to start treatment, at least I have the ability to telecommute if I need to. It would be great if I could still be able to work. I am probably getting ahead of myself, as maybe I won't need to go on any treatment... Do Dr's usually "recommend" treatment, or is that really something that is going to be up to me (which I know ultimately is anyway)? I mean, I feel fine, at least for now... I don't drink or do drugs etc. But I am only 41 years old and figure I have probably had this for 18 - 20 years (maybe more). I feel fine now, and I am sure treatment will have at least "some" negative impact on my life so of course I want to avoid it! But maybe

it's best to bite the bullet and try to make myself fully healthy. Well I am sure it is a hard decision that everyone has to make and I will just need to wait and see what the Gastroenterolist says next month.Thanks again -- Vickie> > Hi, I am new to this group, but not new to this disease. I found > out > > in early 1999 that I have Hep-C and figure at that point I had it > for > > at least 15 years. I have had tests fairly regularly and for the > > most part my results have been pretty consistent with not alot of > > change. My AST/ALT levels have looked like this (starting with > > 1999) -- 25/45, 26/45, 30/42, 45/55 (in 2002), and now

it is > 121/224 > > which is quite a big leap from last years test!! My viral load > > jumped from 281,000 copies in 2002 to 1,690,000 copies this year. > > Needless to say I am a bit worried. I had a biopsy done in 2000 > and > > things looked good then, but also in 2000 everything was still "in > > range". I am going to see a gastroenterologist again to see what's > > up with this. I hope this HCV isn't finally "kicking in" and > > progressing more quickly now. Any thoughts from any other members > > that are more knowledgeable than me? My Genotype is 3a. I really > > don't want to do "treatment" as I am so worried it will make things > > worse. But maybe I need to consider it now. I can't wait until I > > have my appt. with the specialist.> > > >

Thanks,> > Vickie> > > >

[Guest guest]

Sorry Vickie

Got in such a hurry forgot to sign my name..........LOL

Hugs and Prayers to you and all.......... Marie Davies <lisamarie64@...> wrote:

Hello Vickie,

I am fairly new to this group also, but I had to write as we had some things in common. I was just diagnosed Sept 17th this year, I on the other hand have only had mine about 2 years. I am 39 years young, and a very active person. I had a biopsy and I am stage 1 fibrosis, with very little scarring, geno type 1b, hardest to respond to tx. However, I have made the decision to start tx Dec 2nd. Yes, I am very scared of what it might do to my lifestyle, slowing me down of course, however I am already having aches and pains and feel constantly fatigued. I know I only have maybe a 50 percent chance if that , that I will respond, so my Herpetologist tells me. But my perspective is this, I want to give my body every fighting chance I have available , especially NOW while I am healthy. If I waited until things got worse, I may not do as well with the tx. and even though there is a great possibility that I will

feel AWFUL, to say the least, while on the tx for 48 weeks -- it's a chance I am sooooooooo willing to take in hope (and faith) that I will respond and become totally healthy again and back to myself.

Unfortunately, this is the only treatment out there for us, although there is others becoming available in our future it looks like. And If I do not respond to treatment, well I will have least slowed the dragon down while waiting for the next ...

Yes, you have a got a big decision to make, and it is one to be carefully considered, however your Doctor, if knowledgeable, should have some very good advice for you. I am with the Mayo Clinic, which is on of the best in the States, and I put allot of trust in what these Docs recommend, so off I go to the races.........................

And I put allot of Faith in my God too....................

I wish you the best of luck, and know that you are in a very good place here, I couldn't't make it without my hepper friends, they are the best................

Keep us informed.....and don't feel afraid to ask anything...

Lots of Hugs & Prayers go out to youDave <dhz920@...> wrote:

Generally they will recommend the treatment unless there are other health concerns that would make the treatment more difficult. The sooner the treatment is undertaken, the better the odds of success are. Being able to telecommute is a big plus on your side. It's difficult when you feel well, but by the time you start feeling ill with hepatitis you are in the advanced stages of the disease. The other reason treatment might not be recommended or you might decide on your own to wait is if there is a promising new treatment about to be approved. -dz-Vickie Payne <vickiepayne@...> wrote: Wow! What a great group! Thanks for all of the input and I can tell that there really is alot of "support" in this group. If I do need to start treatment, at least I have the ability to telecommute if I need to. It would be great if I could still be able to work. I am probably getting ahead of myself, as maybe I won't need to go on any treatment... Do Dr's usually "recommend" treatment, or is that really something that is going to be up to me (which I know ultimately is anyway)? I mean, I feel fine, at least for now... I don't drink or do drugs etc. But I am only 41 years old and figure I have probably had this for 18 - 20 years (maybe more). I feel fine now, and I am sure treatment will have at least "some" negative impact on my life so of course I want to avoid it! But maybe

it's best to bite the bullet and try to make myself fully healthy. Well I am sure it is a hard decision that everyone has to make and I will just need to wait and see what the Gastroenterolist says next month.Thanks again -- Vickie> > Hi, I am new to this group, but not new to this disease. I found > out > > in early 1999 that I have Hep-C and figure at that point I had it > for > > at least 15 years. I have had tests fairly regularly and for the > > most part my results have been pretty consistent with not alot of > > change. My AST/ALT levels have looked like this (starting with > > 1999) -- 25/45, 26/45, 30/42, 45/55 (in 2002), and now

it is > 121/224 > > which is quite a big leap from last years test!! My viral load > > jumped from 281,000 copies in 2002 to 1,690,000 copies this year. > > Needless to say I am a bit worried. I had a biopsy done in 2000 > and > > things looked good then, but also in 2000 everything was still "in > > range". I am going to see a gastroenterologist again to see what's > > up with this. I hope this HCV isn't finally "kicking in" and > > progressing more quickly now. Any thoughts from any other members > > that are more knowledgeable than me? My Genotype is 3a. I really > > don't want to do "treatment" as I am so worried it will make things > > worse. But maybe I need to consider it now. I can't wait until I > > have my appt. with the specialist.> > > >

Thanks,> > Vickie> > > >