my thoughts - Cynde

[Guest guest]

Hi Cynde

I hope it is ok if I give you some of my thoughts.

The first thing that stood out in your post were your comments about Ascites and PH.

The gurgling and movement of food in your gut does NOT necessarily mean anything more than that you are digesting your food.

My stomach makes weird sounds and movements too.

Please dont talk yourself into an illness that you may not have.

You will just make yourself miserable.

- I have NOT heard of people switching genotypes, for any reason.

Each is genetically different - like cows and horses, but both are mammals.

- I HAVE heard of people having more than one genotype, due to exposure from two different sources.

A thought comes to mind - maybe one of your treatments was successful eliminating one genotype, but not the other?

I dont know if this is possible, but some genotypes are easier to cure than others.

This may be the answer to two different genotype DX's.

Apathy and brain fog [slow thinking] are two different things.

- Apathy is a state of indifference, or the suppression of emotions such as concern, excitement, motivation and passion.

[in my opinion - apathy is self-imposed....a concious choice.]

- brain fog is defined as unusually poor mental function, associated with confusion, forgetfulness and difficulty concentrating.

[in my opinion - brain fog is NOT self-imposed.....unless your drunk.] LOL :-)

Each one of us must sometimes be aggressive when talking with our doctors.

Take a list of your concerns and questions to your doc visits.

It has been my experiance - if you dont ask questions, you dont get answers.

Ok, Im done.

love

don in ks

Hi Gang

I’m unsure how I acquired HepC, but I’ve probably had it for 25 years before diagnosis. Since then, I’ve done two treatment regimens – Pegasys (weekly interferon shots + ribavirin) for 4 months; and Infergen (daily interferon shots + ribavirin) for 6 months. Both failed as the virus broke through. The treatments were very successful in frying my brain, however.

I haven’t done a lot of networking or info-searching online until recently. But it seems every time I read the symptoms of chronic HepC, it’s a brand new set of signs, that then also correlates to new, mysterious, and unusual feelings that I have been having. For example, ascites, portal hypertension, liver palm, spider nevi. . . and a lot of estrogen. Plus this strange non-sad depression, where I don’t feel emotionally depressed, but my body and mind are sluggish and slow to react.

Anyway I’m looking for the good information and support that is supposed to be disseminated by this group.

Cyn-0

[Guest guest]



Hi Don

I've given this reply some thought, as many of your words and advice are quite good.

As for me, though, I am VERY conscious of what the gurgling in my guts are. I can tell which movement it is. About 4 hours after eating, the stomach peristaltis starts moving things into the small intestine. Some time later, the small intestine moves things along; that's a tickly kind of wiggly motion, and can come and go for an hour at least. Then the stuff is all moved into the large intestine; it goes up, transverse, and finally packs down in the exit staging area. I can tell which of these is happening. It's not just random gurgling to me.

So when something else is happening -- something that feels like liquid being forced through a clogged hose, in a location and direction not involved with the other familiar movements, well, I do start to think that it has something to do with my liver. Especially when my liver beats with exhaustion after this process.

So, I don't think I'm talking myself into illness I don't have. I think that this darn thing is getting worse. 8)

Cynde

[ ] my thoughts - Cynde

Hi Cynde

I hope it is ok if I give you some of my thoughts.

The first thing that stood out in your post were your comments about Ascites and PH.

The gurgling and movement of food in your gut does NOT necessarily mean anything more than that you are digesting your food.

My stomach makes weird sounds and movements too.

Please dont talk yourself into an illness that you may not have.

You will just make yourself miserable.

- I have NOT heard of people switching genotypes, for any reason.

Each is genetically different - like cows and horses, but both are mammals.

- I HAVE heard of people having more than one genotype, due to exposure from two different sources.

A thought comes to mind - maybe one of your treatments was successful eliminating one genotype, but not the other?

I dont know if this is possible, but some genotypes are easier to cure than others.

This may be the answer to two different genotype DX's.

Apathy and brain fog [slow thinking] are two different things.

- Apathy is a state of indifference, or the suppression of emotions such as concern, excitement, motivation and passion.

[in my opinion - apathy is self-imposed....a concious choice.]

- brain fog is defined as unusually poor mental function, associated with confusion, forgetfulness and difficulty concentrating.

[in my opinion - brain fog is NOT self-imposed.....unless your drunk.] LOL :-)

Each one of us must sometimes be aggressive when talking with our doctors.

Take a list of your concerns and questions to your doc visits.

It has been my experiance - if you dont ask questions, you dont get answers.

Ok, Im done.

love

don in ks

[Guest guest]

Cynde,You know, most doctors will tell you that you don't feel pain in your liver...  those doctors are wrong.  You can have a painful liver just as I am sure you are feeling what you are saying you are.  When our bodies are in distress they tend to give out signals.  You know that pretty much there are no indications that people have hep c and that's why it takes so long to diagnose it...  nobody looks.  I fully believe your liver is letting you know what's up and that it's not happy.  That " pain " that you aren't supposed to feel in your liver...  ask MY doctor if he believes we can feel pain there.  He will tell you " OH YEAH " and he will tell you that very quickly.  You know why?  Cause he was poking and prodding around one day on me...  went to feel my liver and I slugged him.  HARD!  I had no clue I was doing it I just knew he caused intense pain.  My doctor still loves me but he talks about getting slugged by his patient all the time.  He told people about it at the liver conference last year in Boston.  Somebody brought up that the patients can't feel their liver and he corrected them.  Told them he had the bruises to prove it.  So I TOTALLY believe what you are saying to be true.  Especially since you are that in tune to what is going on.... 

Hugs,TeriOn Tue, Feb 15, 2011 at 1:35 PM, Cynde Moya <cyndemoya@...> wrote:

 



Hi Don

 

I've given this reply some thought, as many of your words and advice are quite good.

 

As for me, though, I am VERY conscious of what the gurgling in my guts are. I can tell which movement it is. About 4 hours after eating, the stomach peristaltis starts moving things into the small intestine. Some time later, the small intestine moves things along; that's a tickly kind of wiggly motion, and can come and go for an hour at least. Then the stuff is all moved into the large intestine; it goes up, transverse, and finally packs down in the exit staging area. I can tell which of these is happening. It's not just random gurgling to me.

 

So when something else is happening -- something that feels like liquid being forced through a clogged hose, in a location and direction not involved with the other familiar movements, well, I do start to think that it has something to do with my liver. Especially when my liver beats with exhaustion after this process.

 

So, I don't think I'm talking myself into illness I don't have. I think that this darn thing is getting worse. 8)

 

Cynde

 

 

 

[ ] my thoughts - Cynde

 

Hi Cynde

I hope it is ok if I give you some of my thoughts.

 

The first thing that stood out in your post were your comments about Ascites and PH.

The gurgling and movement of food in your gut does NOT necessarily mean anything more than that you are digesting your food.

My stomach makes weird sounds and movements too.

Please dont talk yourself into an illness that you may not have.

You will just make yourself miserable.

 

- I have NOT heard of people switching genotypes, for any reason.

Each is genetically different - like cows and horses, but both are mammals.

- I HAVE heard of people having more than one genotype, due to exposure from two different sources.

 

A thought comes to mind - maybe one of your treatments was successful eliminating one genotype, but not the other?

I dont know if this is possible, but some genotypes are easier to cure than others.

This may be the answer to two different genotype DX's.

 

Apathy and brain fog [slow thinking] are two different things.

- Apathy is a state of indifference, or the suppression of emotions such as concern, excitement, motivation and passion.

[in my opinion - apathy is self-imposed....a concious choice.] 

- brain fog is defined as unusually poor mental function, associated with confusion, forgetfulness and difficulty concentrating.

[in my opinion - brain fog is NOT self-imposed.....unless your drunk.] LOL :-)

 

Each one of us must sometimes be aggressive when talking with our doctors.

Take a list of your concerns and questions to your doc visits.

It has been my experiance - if you dont ask questions, you dont get answers.

 

Ok, Im done.

 

love

don in ks

 

[Guest guest]

CyndeI knew that I had read somewhere that a person could indeed have two different genotypes. What I haven't found yet, is whether the virus can change to another type during treatment, thereby fooling the medication. I'm off again to look around.Gloria www.liversociety.org/html/genotype.htmlHi Don

I've given this reply some thought, as many of your words and advice are quite good.

As for me, though, I am VERY conscious of what the gurgling in my guts are. I can tell which movement it is. About 4 hours after eating, the stomach peristaltis starts moving things into the small intestine. Some time later, the small intestine moves things along; that's a tickly kind of wiggly motion, and can come and go for an hour at least. Then the stuff is all moved into the large intestine; it goes up, transverse, and finally packs down in the exit staging area. I can tell which of these is happening. It's not just random gurgling to me.

So when something else is happening -- something that feels like liquid being forced through a clogged hose, in a location and direction not involved with the other familiar movements, well, I do start to think that it has something to do with my liver. Especially when my liver beats with exhaustion after this process.

So, I don't think I'm talking myself into illness I don't have. I think that this darn thing is getting worse. 8)

Cynde

A

[Guest guest]



I appreciate your looking into this, Gloria. It's one of the many mysteries of my HepC manifestation that I puzzle over.

Cynde

Re: [ ] my thoughts - Cynde

CyndeI knew that I had read somewhere that a person could indeed have two different genotypes. What I haven't found yet, is whether the virus can change to another type during treatment, thereby fooling the medication. I'm off again to look around.Gloria www.liversociety.org/html/genotype.html

Hi Don

I've given this reply some thought, as many of your words and advice are quite good.

As for me, though, I am VERY conscious of what the gurgling in my guts are. I can tell which movement it is. About 4 hours after eating, the stomach peristaltis starts moving things into the small intestine. Some time later, the small intestine moves things along; that's a tickly kind of wiggly motion, and can come and go for an hour at least. Then the stuff is all moved into the large intestine; it goes up, transverse, and finally packs down in the exit staging area. I can tell which of these is happening. It's not just random gurgling to me.

So when something else is happening -- something that feels like liquid being forced through a clogged hose, in a location and direction not involved with the other familiar movements, well, I do start to think that it has something to do with my liver. Especially when my liver beats with exhaustion after this process.

So, I don't think I'm talking myself into illness I don't have. I think that this darn thing is getting worse. 8)

Cynde

A

[Guest guest]

Cynde,I just called my Liver Specialist for you!  I just now hung up with him...  I love my doc.  I asked this very question.  This is what he said.  You can have more than one Genotype and be a 1a and a 1b or a 1a and a 2b OR you could be a 1a, go thru tx, stop short of the full on regimen and have the virus mutate into a whole different Genotype.  Cool huh?  Or not cool really but this little virus is a strange thing.  He also said that if someone was a 1a and a 1b that they concentrate only on the worse of the two which would be the 1a and they wouldn't even report the 1b to the patient most of the time.  So you could have been infected with 2 different genotypes to start with and your tx got rid of one of them.. or it could have mutated.  

There...  now we have an answer..  I think....  that was the question right?  BRAIN FOG!  Hugs,TeriOn Wed, Feb 16, 2011 at 1:53 PM, Cynde Moya <cyndemoya@...> wrote:

 



I appreciate your looking into this, Gloria. It's one of the many mysteries of  my HepC manifestation that I puzzle over.

 

Cynde

 

Re: [ ] my thoughts - Cynde

 

CyndeI knew that I had read somewhere that a person could indeed have two different genotypes.  What I haven't found yet, is whether the virus can change to another type during treatment, thereby fooling the medication.  I'm off again to look around.Gloria   www.liversociety.org/html/genotype.html

Hi Don

 

I've given this reply some thought, as many of your words and advice are quite good.

 

As for me, though, I am VERY conscious of what the gurgling in my guts are. I can tell which movement it is. About 4 hours after eating, the stomach peristaltis starts moving things into the small intestine. Some time later, the small intestine moves things along; that's a tickly kind of wiggly motion, and can come and go for an hour at least. Then the stuff is all moved into the large intestine; it goes up, transverse, and finally packs down in the exit staging area. I can tell which of these is happening. It's not just random gurgling to me.

 

So when something else is happening -- something that feels like liquid being forced through a clogged hose, in a location and direction not involved with the other familiar movements, well, I do start to think that it has something to do with my liver. Especially when my liver beats with exhaustion after this process.

 

So, I don't think I'm talking myself into illness I don't have. I think that this darn thing is getting worse. 8)

 

Cynde

 

 

 

A

[Guest guest]

That's why I am so grateful that in the world of Hep C, some Drs and researchers are beginning to see things!!In 2004/2005, I did tx to battle the 1b. Once I had passed the 12 weeks mark, no other viral counts were taken until the bitter end!! Well, quess what?? They figure that the damn virus mutated sometime after the 12th week. That didn't impress me much.

Cynde,I just called my Liver Specialist for you! I just now hung up with him... I love my doc. I asked this very question. This is what he said. You can have more than one Genotype and be a 1a and a 1b or a 1a and a 2b OR you could be a 1a, go thru tx, stop short of the full on regimen and have the virus mutate into a whole different Genotype. Cool huh? Or not cool really but this little virus is a strange thing. He also said that if someone was a 1a and a 1b that they concentrate only on the worse of the two which would be the 1a and they wouldn't even report the 1b to the patient most of the time. So you could have been infected with 2 different genotypes to start with and your tx got rid of one of them.. or it could have mutated.

There... now we have an answer.. I think.... that was the question right? BRAIN FOG! Hugs,TeriOn Wed, Feb 16, 2011 at 1:53 PM, Cynde Moya <cyndemoya@...> wrote:



I appreciate your looking into this, Gloria. It's one of the many mysteries of my HepC manifestation that I puzzle over.

Cynde

Re: [ ] my thoughts - Cynde

CyndeI knew that I had read somewhere that a person could indeed have two different genotypes. What I haven't found yet, is whether the virus can change to another type during treatment, thereby fooling the medication. I'm off again to look around.Gloria www.liversociety.org/html/genotype.html

Hi Don

I've given this reply some thought, as many of your words and advice are quite good.

As for me, though, I am VERY conscious of what the gurgling in my guts are. I can tell which movement it is. About 4 hours after eating, the stomach peristaltis starts moving things into the small intestine. Some time later, the small intestine moves things along; that's a tickly kind of wiggly motion, and can come and go for an hour at least. Then the stuff is all moved into the large intestine; it goes up, transverse, and finally packs down in the exit staging area. I can tell which of these is happening. It's not just random gurgling to me.

So when something else is happening -- something that feels like liquid being forced through a clogged hose, in a location and direction not involved with the other familiar movements, well, I do start to think that it has something to do with my liver. Especially when my liver beats with exhaustion after this process.

So, I don't think I'm talking myself into illness I don't have. I think that this darn thing is getting worse. 8)

Cynde

A

[Guest guest]



This is amazing. So the virus can mutate while it is in your body. I wonder, since I did the treatment and went to undetectable and then it broke through, whether I really did breed a bunch of resistant HCV's. Or if the type has changed again. Or what. Nothing would really surprise me.

I feel like the Host Body, invaded by these billions of little space aliens who are taking over the best biological mechanisms of my body to reproduce. Now, they want to break free; they'll use their fast reproduction and brain-fog to confuse me into indiscreetly releasing some blood. The best I can do is to keep them from getting out of me and into another host body.

Are there any good animations that show the structures of the HCV, and what the different genotypes look like? I like visualizations.

Thanks

Cynde

Re: [ ] my thoughts - Cynde

CyndeI knew that I had read somewhere that a person could indeed have two different genotypes. What I haven't found yet, is whether the virus can change to another type during treatment, thereby fooling the medication. I'm off again to look around.Gloria www.liversociety.org/html/genotype.html

Hi Don

I've given this reply some thought, as many of your words and advice are quite good.

As for me, though, I am VERY conscious of what the gurgling in my guts are. I can tell which movement it is. About 4 hours after eating, the stomach peristaltis starts moving things into the small intestine. Some time later, the small intestine moves things along; that's a tickly kind of wiggly motion, and can come and go for an hour at least. Then the stuff is all moved into the large intestine; it goes up, transverse, and finally packs down in the exit staging area. I can tell which of these is happening. It's not just random gurgling to me.

So when something else is happening -- something that feels like liquid being forced through a clogged hose, in a location and direction not involved with the other familiar movements, well, I do start to think that it has something to do with my liver. Especially when my liver beats with exhaustion after this process.

So, I don't think I'm talking myself into illness I don't have. I think that this darn thing is getting worse. 8)

Cynde

A

[Guest guest]

Yes, the virus can mutate...  but also, it is possible that you were originally infected with more than one strain of hep c.  In that case they report the one that is more dominant and treat for that one which will knock both out usually.  Could be that the more dominant strain got wiped out and the less dominant one remained.  All sorts of possibilities...  Kinda like how we got infected... all sorts of possibilities.  Too many to wrap your head around even.  

I haven't seen any animations on the genotypes or the mutations but I'm sure there are some out there..  I'll take a look and see what I can find!  Hugs,Teri

On Thu, Feb 17, 2011 at 12:39 PM, Cynde Moya <cyndemoya@...> wrote:

 



This is amazing. So the virus can mutate while it is in your body. I wonder, since I did the treatment and went to undetectable and then it broke through, whether I really did breed a bunch of resistant HCV's. Or if the type has changed again. Or what. Nothing would really surprise me.

 

I feel like the Host Body, invaded by these billions of little space aliens who are taking over the best biological mechanisms of my body to reproduce. Now, they want to break free; they'll use their fast reproduction and brain-fog to confuse me into indiscreetly releasing some blood. The best I can do is to keep them from getting out of me and into another host body.

 

 

Are there any good animations that show the structures of the HCV, and what the different genotypes look like? I like visualizations.

 

Thanks

Cynde

 

 

 

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