Re: (unknown)

November 8, 2003

Hi Suzie,

I don't think CAT scans or MRIs show very much. I've never had to have

those done. But, I did have a biopsy. That's the best test to show how

much damage you have to your liver. I think the other tests might show

Cirrhosis, but I don't think they would show milder damage, like

inflammation or fibrosis. Those other tests are expensive, too.

I've heard that you shouldn't start treatment unless you have a

biopsy. Good luck.

Marie

At 05:29 PM 11/8/2003, you wrote:

>Marie thank you so much for your rapid response . I used to know this kind

>of thing but my brain is fogged lately. I'm waiting to go on tx but my doc

>keeps sending me for tests - CAT scan . MRI , Ultrasound etc. Weird how

>the docs push & push for tx & when you finally agree to it & your stomach

>is in knots awaiting tx , they make you wait & wait !!

>Suzie

>

>Marie Kuhn <mariemk@...> wrote:

>Hi Suzie,

>The CBC tells you about your level of blood platelets, along with a bunch

>of other things. Platelets are what cause your blood to clot. Mine was

>a little low last time, but I only have 4 more weeks of treatment, thank

>goodness.

>

>Good luck with your tests.

>

>Marie in NW Florida

>

>At 05:09 PM 11/8/2003, you wrote:

> >Hi Guys, I've got a question - my doctor gave me a blood requisition so I

> >can get my bloodwork done before I see him next month . My question is -

> >which is it that tests for the thing that causes the blood to clot . He

> >has ordered AST , ALT , GGT , CBC & INR . Is any of these the clotting

> >thingy ? I can add to the req if it's something else .

> >Thanks , Suzie

> >

November 8, 2003

Hello again Marie , I had a biopsy back in '96 that showed cirrhosis & my LFTs have been elevated since I was diagnosed . My gastro , who had had me on tx twice , died three years ago & since he was the only one left in town (except for a semi-retired 70 yr old) I have been seeing an infectious diseases doc . I've been asking him for a repeat biopsy since I started seeing him but he said only if I went on tx so I finally said O K .Then he started all these other tests. He's pretty much the only game in town & I can't afford to go elsewhere . There are thousands of people in this town who have no doctor at all - they have to use the Emergency Room when they need to see a doctor !

SuzieMarie Kuhn <mariemk@...> wrote:

Hi Suzie,I don't think CAT scans or MRIs show very much. I've never had to have those done. But, I did have a biopsy. That's the best test to show how much damage you have to your liver. I think the other tests might show Cirrhosis, but I don't think they would show milder damage, like inflammation or fibrosis. Those other tests are expensive, too.I've heard that you shouldn't start treatment unless you have a biopsy. Good luck.MarieAt 05:29 PM 11/8/2003, you wrote:>Marie thank you so much for your rapid response . I used to know this kind >of thing but my brain is fogged lately. I'm waiting to go on tx but my doc >keeps sending me for tests - CAT scan . MRI , Ultrasound etc. Weird how >the docs push & push for tx & when you finally agree to it

& your stomach >is in knots awaiting tx , they make you wait & wait !!>Suzie>>Marie Kuhn <mariemk@...> wrote:>Hi Suzie,>The CBC tells you about your level of blood platelets, along with a bunch>of other things. Platelets are what cause your blood to clot. Mine was>a little low last time, but I only have 4 more weeks of treatment, thank>goodness.>>Good luck with your tests.>>Marie in NW Florida>>>At 05:09 PM 11/8/2003, you wrote:> >Hi Guys, I've got a question - my doctor gave me a blood requisition so I> >can get my bloodwork done before I see him next month . My question is -> >which is it that tests for the thing that causes the blood to clot . He> >has ordered AST , ALT , GGT , CBC & INR . Is any of these the clotting> >thingy ? I can add to the req if it's something

else .> >Thanks , Suzie> >> >

November 10, 2003

Bob;

There are good reasons for doing things and bad ones. Almost every treatment a

doctor offers for-I would say- almost everything, has the potential to do harm

to some people. I am sure it is commonplace to consider risks and cost/benefits

ratios before taking a course of action. I wont't deny that it could be done

better, but that is the way it is done. Unless one KNOWS that the motives are

bad,; greed, ambition, callousness, no way to blame a doctor for taking normal

risks.

Adrienne

(unknown)

For those who do not know Englebienne, he is an associate of

Dr Kenny DeMeirleir and the Free University of Belgium. He is also a

PhD and has been studying CFS alongside KDM for many years. This

article is about RNase L and what it has to do with CFS. It also

includes toward the end some treatment suggestions. He not only talks

about elastase inhibitors but also calcium antagonists as treatments.

Here is another quote from Dr Englebienne, " therefore has a direct

negative impact on intra-cellular elastase (a serine protease)

regulation. Isn't Dr Englebienne saying here that elastase is on the

inside of the cell?

Several people have touted Ampligen as being the answer. Yes Ampligen

has helped some people. In fact Dr Englebienne, an associate of Dr

DeMeirleir who has used Ampligen many times in treating CFS, said this

about Ampligen in this same article, " To the best of my knowledge,

the only drug so far developed and capable of regulating the 2-5OAS

activity is the mismatched ds-RNA Ampligen (47), which unfortunately

also upregualates PKR (48), which is highly undesirable in CFS. If Dr

Englebienne knew Ampligen could be dangerous in treating CFS, surely

Dr DeMeirleir also knew this and yet he used Ampligen anyway.

Bob

Co-Cure/message/5277

November 10, 2003

Phyllis,

Yes, I think depression is a perfectly normal reaction to this disease. I too

remember clearly how it felt not having it and I have spent my share of time on

the " pity pot " . Now I only allow myself to do it occasionally though because it

can become habit. And, as I'm sure you know, we don't have to look too far to

find somebody with worse problems. I heard today that a 34 year old sister of a

coworker had a double mastectomy this morning. She has 3 children, the youngest

1 month old. Took me right out of the doldrums today.

I have a lot of trouble in the morning too and am lucky enough that I can go

slow until things loosen up a bit. As much as it hurts I am glad that I work

because I have to use my computer all day and that loosens up my fingers and I

think keeps them moving. If I didn't have to go to work each morning I am

afraid I would baby myself until I stiffened up permanently.

There is a lot of help out there for us so I hope you can kick the depression in

the teeth the majority of the time and the rest of the time try to remember that

you are not alone.

Cheri :-)

[ ] (unknown)

Hi,

My name is Phyllis. I've had psoriatic arthritis for almost 30

years.

I was in remission for 17-18 years and beginning 2-3 years ago have

experienced more and more problems. I have new joints that are

involved now and a lot of pain. Dressing myself in the AM has

suddenly become a challenge. The fatigue is intense also.

I'm on my way back to a rheumatologist's care but am having a

significant amount of depression. It is so hard to be so sick again

after feeling reasonably good for so long. I know that I'm on

the " pity pot " but I'm feeling so cheated right now.

Anyone out there who has been through this too?

Thanks, Phyllis

[Editor's Note: Hi Phyllis; sorry we are meeting under these circumstances,

but at least you will know you're not alone. You would think that after 17-18

years, you would have been " safe " . From what you relate above, it sure sounds

like the return of PA.

Are you taking any medication for the PA? Any medication at all (OTC or

prescription)?

Depression is an all-too-common concomitant to serious, chronic illness, and

perhaps particularly to PA, with all of PA's unknowns and uncertainties. The

docs frequently prescribe an SSRI (a serotinin re-uptake inhibitor, e.g.,

Zoloft, Prozac)), a major tranquilizer such as one of the phenothiazine

group--Mellaril, Thorazine, Stelazine), or some other mood elevator (Elavil,

Nardil, etc.) for PA patients. The concept here is that depression intensifies

the experience/sensations of pain.

I hope you receive good news Wednesday, at your doc's.

D.]

November 10, 2003

no way to blame a doctor for taking normal risks.

> Adrienne

Adienne, I assume you are talking about Dr Meirleir using Amplgen on

PWC's knowing that it is highly undesirable becuase it can upregualte

the PKR? I agree that every doctor has to weigh the risk in giving

Ampligen. A lot of people was upset at the NCF because they were

against Ampligen soon after it started being used. There was a member

of Gail's then Massuchusetts CFIDS support group, who flew to Belgium

and got treated with Ampligen. This person has been in a wheel-chair

ever since. I guess if a close friend of mine was hurt like this by a

drug, I would probably be against it also. Only normal. I guess the

question is the doctor taking " normal " risks?

Now, I am old and been ill for 28 years. I am more than willing to

take the risks and try things out, but I hate to see younger people

try them out and it puts them in a wheel-chair, they have longer to

spend in it than I would.

Good Health to You, Bob

November 10, 2003

Two different doctors devastated my life; one with a common antidepressant, and

the other with a flu shot.

The second one, when I called six weeks after the shot to say I was still sick,

said, " Oh, I guess you really do have chronic fatigue syndrome. " Irony: he

believed in the disease, but not that I had it. He saw I was obese and all he

ever did was try to get me to lose weight.

All kinds of " stuff " happens all the time. I am too sick to waste any energy

being " against. " My own anger has cost me much, as well as what others have done

to me.

Peace,