Re: disappointment - Trudy

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Don and Trudy,Don..  problem with the doctor that gave her 60 to 90 minutes is that he just signed off on her.  He's done.  His choice.  I told Trudy earlier that I thought there were too many chefs in the kitchen.  Trudy had some normal hep c treatment craziness and the gastro freaked, therefore sending her to a Neuro and an Oncologist.  It seems like most of the neurological problems were caused by the Elavil she was taking...  Once all that Elavil is out of her system, that mess should calm down.  But yeah, if it were me, before I rethought treatment, I'd make sure I was in the hands of a Liver Specialist that knows hep c like the back of his hand.  For the most part, when it comes to hep c, I think we'd all be better off with a Liver Specialist instead of a gastro..  I am just hearing too many things coming from Gastro's that convince me they just don't know enough.  Just enough to be dangerous.  Gastro's are pretty quick to stop treatment when complications arise where the Hepatologist plows thru them but he knows what to do.  A Hepatologist will prescribe rescue drugs and transfusions for anemia where gastro's tend to stop treatment.  Just sayin.

Trudy...  sweetie, you are the trooper of all troopers.  You have been dealt a crap hand but you have been playing it just like it was a full house.  You did everything you were supposed to.  I think your doctors caused you more stress than the damn treatment did.  Like Don said, take some time, feel better than attack this sucker again.  

Hugs,TeriOn Thu, Mar 10, 2011 at 1:02 AM, Christ <ludichrist2000@...> wrote:

 

Hi Trudy

I just want to throw in my 2 cents if that is ok.

I know your disappointed about doing treatment, and going thru so much, and not clearing.

I havent treated yet, but I think I too would be real bummed.

 

While I agree with maybe finding new doctors and all, there is something to think about here.

Doctors cant possibly know EVERYTHING, and a person cant expect a doctor to know everything.

 

I think that your main doctors have worked very hard to DX, and treat you.

You just stated that your doc would give you 60-90 minutes per visit - and thats pretty rare.

Most docs have a patient in and out.

Having one that gives you so much energy.....well, I think if it were me, I would have to think twice about getting rid of them completely.

 

And another thing - like my old Dad always tells me - 'doctors are just practicing'.

This is going to be true no matter what doctor you go see.

 

You know Trudy, you were having some very real complications there for a long time - stuttering, falling, shaking, etc.

It may have been a 'good thing' that you were taken off of treatment for now.

Your doctor may have saved your life or something.

I dont know, but I have followed your history of treating and all.

It just makes me think.

 

Anyways, give yourself some time to heal, mentally and physically.

Dont jump the gun about anything just yet.

You might do like Teri suggested and go see a Heptologist in the interm, and get some more opinions and all.

Remember, the game isnt over yet, and you have lots of options.

 

And dont blame me for keeping you up all night. LOL :-)

It werent me.

 

love

don in ks

 

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I agree with you about Hep Dr instead of Gastro. But we only have three Hep Drs within a 4 hr radius. I saw every one of them. Every one of them refused tx cause I had too many other issues. Turned out to be Fibro and Istill this lingering nuero-involved issue. But thank heaven for my GP. He researched and took me off Elavil.That was reeking havoc with me. And he discovered that my body does not making any B-12 . None. And consistantly low B-12 can cause brain fog, " A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/13404608 On Mar 10, 2011, at 1:32 AM, Theresa Gottlieb <theresagottlieb@...> wrote:

Don and Trudy,Don.. problem with the doctor that gave her 60 to 90 minutes is that he just signed off on her. He's done. His choice. I told Trudy earlier that I thought there were too many chefs in the kitchen. Trudy had some normal hep c treatment craziness and the gastro freaked, therefore sending her to a Neuro and an Oncologist. It seems like most of the neurological problems were caused by the Elavil she was taking... Once all that Elavil is out of her system, that mess should calm down. But yeah, if it were me, before I rethought treatment, I'd make sure I was in the hands of a Liver Specialist that knows hep c like the back of his hand. For the most part, when it comes to hep c, I think we'd all be better off with a Liver Specialist instead of a gastro.. I am just hearing too many things coming from Gastro's that convince me they just don't know enough. Just

enough to be dangerous. Gastro's are pretty quick to stop treatment when complications arise where the Hepatologist plows thru them but he knows what to do. A Hepatologist will prescribe rescue drugs and transfusions for anemia where gastro's tend to stop treatment. Just sayin.

Trudy... sweetie, you are the trooper of all troopers. You have been dealt a crap hand but you have been playing it just like it was a full house. You did everything you were supposed to. I think your doctors caused you more stress than the damn treatment did. Like Don said, take some time, feel better than attack this sucker again.

Hugs,TeriOn Thu, Mar 10, 2011 at 1:02 AM, Christ <ludichrist2000@...> wrote:

Hi Trudy

I just want to throw in my 2 cents if that is ok.

I know your disappointed about doing treatment, and going thru so much, and not clearing.

I havent treated yet, but I think I too would be real bummed.

While I agree with maybe finding new doctors and all, there is something to think about here.

Doctors cant possibly know EVERYTHING, and a person cant expect a doctor to know everything.

I think that your main doctors have worked very hard to DX, and treat you.

You just stated that your doc would give you 60-90 minutes per visit - and thats pretty rare.

Most docs have a patient in and out.

Having one that gives you so much energy.....well, I think if it were me, I would have to think twice about getting rid of them completely.

And another thing - like my old Dad always tells me - 'doctors are just practicing'.

This is going to be true no matter what doctor you go see.

You know Trudy, you were having some very real complications there for a long time - stuttering, falling, shaking, etc.

It may have been a 'good thing' that you were taken off of treatment for now.

Your doctor may have saved your life or something.

I dont know, but I have followed your history of treating and all.

It just makes me think.

Anyways, give yourself some time to heal, mentally and physically.

Dont jump the gun about anything just yet.

You might do like Teri suggested and go see a Heptologist in the interm, and get some more opinions and all.

Remember, the game isnt over yet, and you have lots of options.

And dont blame me for keeping you up all night. LOL :-)

It werent me.

love

don in ks

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Ahh, I hadn't realized that this was the idiot that signed off!!! For sure, hunt around to find that Liver Specialist. Likely, it's going to take months to get an appointment anyway, so you have time to really look and research him.I thought you and hubby had to get back to the 5th wheel and go where he works??Gloria

Don and Trudy,Don.. problem with the doctor that gave her 60 to 90 minutes is that he just signed off on her. He's done. His choice. I told Trudy earlier that I thought there were too many chefs in the kitchen. Trudy had some normal hep c treatment craziness and the gastro freaked, therefore sending her to a Neuro and an Oncologist. It seems like most of the neurological problems were caused by the Elavil she was taking... Once all that Elavil is out of her system, that mess should calm down. But yeah, if it were me, before I rethought treatment, I'd make sure I was in the hands of a Liver Specialist that knows hep c like the back of his hand. For the most part, when it comes to hep c, I think we'd all be better off with a Liver Specialist instead of a gastro.. I am just hearing too many things coming from Gastro's that convince me they just don't know enough. Just

enough to be dangerous. Gastro's are pretty quick to stop treatment when complications arise where the Hepatologist plows thru them but he knows what to do. A Hepatologist will prescribe rescue drugs and transfusions for anemia where gastro's tend to stop treatment. Just sayin.

Trudy... sweetie, you are the trooper of all troopers. You have been dealt a crap hand but you have been playing it just like it was a full house. You did everything you were supposed to. I think your doctors caused you more stress than the damn treatment did. Like Don said, take some time, feel better than attack this sucker again.

Hugs,Teri

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Yup, and Teri was saying in a few posts - it's the Elavil!!

I agree with you about Hep Dr instead of Gastro. But we only have three Hep Drs within a 4 hr radius. I saw every one of them. Every one of them refused tx cause I had too many other issues. Turned out to be Fibro and Istill this lingering nuero-involved issue. But thank heaven for my GP. He researched and took me off Elavil.That was reeking havoc with me. And he discovered that my body does not making any B-12 . None. And consistantly low B-12 can cause brain fog, " A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/13404608 On Mar 10, 2011, at 1:32 AM, Theresa Gottlieb <theresagottlieb@...> wrote:

Don and Trudy,Don.. problem with the doctor that gave her 60 to 90 minutes is that he just signed off on her. He's done. His choice. I told Trudy earlier that I thought there were too many chefs in the kitchen. Trudy had some normal hep c treatment craziness and the gastro freaked, therefore sending her to a Neuro and an Oncologist. It seems like most of the neurological problems were caused by the Elavil she was taking... Once all that Elavil is out of her system, that mess should calm down. But yeah, if it were me, before I rethought treatment, I'd make sure I was in the hands of a Liver Specialist that knows hep c like the back of his hand. For the most part, when it comes to hep c, I think we'd all be better off with a Liver Specialist instead of a gastro.. I am just hearing too many things coming from Gastro's that convince me they just don't know enough. Just

enough to be dangerous. Gastro's are pretty quick to stop treatment when complications arise where the Hepatologist plows thru them but he knows what to do. A Hepatologist will prescribe rescue drugs and transfusions for anemia where gastro's tend to stop treatment. Just sayin.

Trudy... sweetie, you are the trooper of all troopers. You have been dealt a crap hand but you have been playing it just like it was a full house. You did everything you were supposed to. I think your doctors caused you more stress than the damn treatment did. Like Don said, take some time, feel better than attack this sucker again.

Hugs,TeriOn Thu, Mar 10, 2011 at 1:02 AM, Christ <ludichrist2000@...> wrote:

Hi Trudy

I just want to throw in my 2 cents if that is ok.

I know your disappointed about doing treatment, and going thru so much, and not clearing.

I havent treated yet, but I think I too would be real bummed.

While I agree with maybe finding new doctors and all, there is something to think about here.

Doctors cant possibly know EVERYTHING, and a person cant expect a doctor to know everything.

I think that your main doctors have worked very hard to DX, and treat you.

You just stated that your doc would give you 60-90 minutes per visit - and thats pretty rare.

Most docs have a patient in and out.

Having one that gives you so much energy.....well, I think if it were me, I would have to think twice about getting rid of them completely.

And another thing - like my old Dad always tells me - 'doctors are just practicing'.

This is going to be true no matter what doctor you go see.

You know Trudy, you were having some very real complications there for a long time - stuttering, falling, shaking, etc.

It may have been a 'good thing' that you were taken off of treatment for now.

Your doctor may have saved your life or something.

I dont know, but I have followed your history of treating and all.

It just makes me think.

Anyways, give yourself some time to heal, mentally and physically.

Dont jump the gun about anything just yet.

You might do like Teri suggested and go see a Heptologist in the interm, and get some more opinions and all.

Remember, the game isnt over yet, and you have lots of options.

And dont blame me for keeping you up all night. LOL :-)

It werent me.

love

don in ks

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Ok, #1: we just found out last week that we would be staying here for at least another 6 months. ( wait a min, I can't wait til August to redo tx...need to get it done before Hubby has to relocate..Damn!) right now Hubby is in New Orleans for 5 days.#2 it wasn't Gastro that signed off. It was the Nuero. Which I still need a nuero. No the Electric shocks or currents start in my hand and boob then speed thru the rest of me; but never the back of my body. So strange, but somewhere there is a Dr that knows what it is. There's gotta be. But how do I find him?" A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Mar 10, 2011, at 8:00 PM, Gloria <gadamscan@...> wrote:

Ahh, I hadn't realized that this was the idiot that signed off!!! For sure, hunt around to find that Liver Specialist. Likely, it's going to take months to get an appointment anyway, so you have time to really look and research him.I thought you and hubby had to get back to the 5th wheel and go where he works??Gloria

Don and Trudy,Don.. problem with the doctor that gave her 60 to 90 minutes is that he just signed off on her. He's done. His choice. I told Trudy earlier that I thought there were too many chefs in the kitchen. Trudy had some normal hep c treatment craziness and the gastro freaked, therefore sending her to a Neuro and an Oncologist. It seems like most of the neurological problems were caused by the Elavil she was taking... Once all that Elavil is out of her system, that mess should calm down. But yeah, if it were me, before I rethought treatment, I'd make sure I was in the hands of a Liver Specialist that knows hep c like the back of his hand. For the most part, when it comes to hep c, I think we'd all be better off with a Liver Specialist instead of a gastro.. I am just hearing too many things coming from Gastro's that convince me they just don't know enough. Just

enough to be dangerous. Gastro's are pretty quick to stop treatment when complications arise where the Hepatologist plows thru them but he knows what to do. A Hepatologist will prescribe rescue drugs and transfusions for anemia where gastro's tend to stop treatment. Just sayin.

Trudy... sweetie, you are the trooper of all troopers. You have been dealt a crap hand but you have been playing it just like it was a full house. You did everything you were supposed to. I think your doctors caused you more stress than the damn treatment did. Like Don said, take some time, feel better than attack this sucker again.

Hugs,Teri

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Google?  Sorry, I'm in silly mode tonight.  Tired but won't go to bed cause I wanna watch the earthquake coverage.On Fri, Mar 11, 2011 at 2:18 AM, trudykinsey@... <trudykinsey@...> wrote:

 

Ok, #1: we just found out last week that we would be staying here for at least another 6 months. ( wait a min, I can't wait til August to redo tx...need to get it done before Hubby has to relocate..Damn!) right now Hubby is in New Orleans for 5 days.

#2 it wasn't Gastro that signed off. It was the Nuero. Which I still need a nuero. No the Electric shocks or currents start in my hand and boob then speed thru the rest of me; but never the back of my body. So strange, but somewhere there is a Dr that knows what it is. There's gotta be. But how do I find him?

" A well-behaved woman never made history "  Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877

            

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Huh? Earthquake? Where ? Been watching 3hrs of Idol & House on Dvr" A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Mar 11, 2011, at 2:33 AM, Theresa Gottlieb <theresagottlieb@...> wrote:

Google? Sorry, I'm in silly mode tonight. Tired but won't go to bed cause I wanna watch the earthquake coverage.On Fri, Mar 11, 2011 at 2:18 AM, trudykinsey@... <trudykinsey@...> wrote:

Ok, #1: we just found out last week that we would be staying here for at least another 6 months. ( wait a min, I can't wait til August to redo tx...need to get it done before Hubby has to relocate..Damn!) right now Hubby is in New Orleans for 5 days.

#2 it wasn't Gastro that signed off. It was the Nuero. Which I still need a nuero. No the Electric shocks or currents start in my hand and boob then speed thru the rest of me; but never the back of my body. So strange, but somewhere there is a Dr that knows what it is. There's gotta be. But how do I find him?

" A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877

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So was I.. turn on CNNOn Fri, Mar 11, 2011 at 3:00 AM, trudykinsey@... <trudykinsey@...> wrote:

 

Huh? Earthquake? Where ? Been watching 3hrs of Idol & House on Dvr " A well-behaved woman never made history "  Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877

            On Mar 11, 2011, at 2:33 AM, Theresa Gottlieb <theresagottlieb@...> wrote:

 

Google?  Sorry, I'm in silly mode tonight.  Tired but won't go to bed cause I wanna watch the earthquake coverage.On Fri, Mar 11, 2011 at 2:18 AM, trudykinsey@... <trudykinsey@...> wrote:

 

Ok, #1: we just found out last week that we would be staying here for at least another 6 months. ( wait a min, I can't wait til August to redo tx...need to get it done before Hubby has to relocate..Damn!) right now Hubby is in New Orleans for 5 days.

#2 it wasn't Gastro that signed off. It was the Nuero. Which I still need a nuero. No the Electric shocks or currents start in my hand and boob then speed thru the rest of me; but never the back of my body. So strange, but somewhere there is a Dr that knows what it is. There's gotta be. But how do I find him?

" A well-behaved woman never made history "  Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877

            

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Trudy,

I am so very sorry, I know how you feel. I remember the gut wrentching feeling especially after I stayed so possitive. After about 1 minute I told doctor to sign me up for round 2. Let yourself heal and maybe you can treat again.

Stay positive and I'm truely sorry!

Pam