Re: Re: PSC affecting brain

[Guest guest]

Carolyn -

Saw the bad news on your tooth today on your Caring Site. I couldn't figure out how to respond. My heart goes out to anyone with dental issues, but especially if a tooth fractures - they are so difficult.

Hope all goes well for you. Take care. You have been through a lot recently. Best wishes for an improved summer, fall, winter 2008!

Joanne H

(, Ca., mom of , 17 for 13 more days)

Regards,Carolyn B. in SC

..

[Guest guest]

Carolyn -

Saw the bad news on your tooth today on your Caring Site. I couldn't figure out how to respond. My heart goes out to anyone with dental issues, but especially if a tooth fractures - they are so difficult.

Hope all goes well for you. Take care. You have been through a lot recently. Best wishes for an improved summer, fall, winter 2008!

Joanne H

(, Ca., mom of , 17 for 13 more days)

Regards,Carolyn B. in SC

..

[Guest guest]

Carolyn I have been on Xifaxan for over a year now I went to get a refill and the INS.company denied it said I didn't have (HE)..Kind of funny when (HE) is on my Dr's. notes The Ins company is giving me a something else...The only reason I feel they denied it was the cost...I tried lactulose didn't help at all... Thanks alot Jeanne"Carolyn B." wrote: >> I know how you feel I have the same symptom..I am stage 4> last Monday & Tuesday was real bad..I call it brain fog..I cant think> straight or remember anything and my speech is slurred my kids can tell when I am talking to them....I had to drive into town and > I got confused where i was.. I shouldn't have been driving....==================Jeanne -- Why in heaven's name doesn't your dr. have you on something like Xifaxan????? Before starting that, I had reached the point of being a blithering idiot. Didn't know what I was saying half the time, couldn't figure out how to write a check, definitely couldn't drive!!! The Xifaxan has given me back a quality of life I didn't dare dream of, and also kicked my Crohn's into deep deep remission.Demand that your dr. give

you something .... preferably Xifaxan (which won't keep you tied to the bathroom as lactulose does.)Regards,Carolyn B. in SC Jeanne

[Guest guest]

Carolyn I have been on Xifaxan for over a year now I went to get a refill and the INS.company denied it said I didn't have (HE)..Kind of funny when (HE) is on my Dr's. notes The Ins company is giving me a something else...The only reason I feel they denied it was the cost...I tried lactulose didn't help at all... Thanks alot Jeanne"Carolyn B." wrote: >> I know how you feel I have the same symptom..I am stage 4> last Monday & Tuesday was real bad..I call it brain fog..I cant think> straight or remember anything and my speech is slurred my kids can tell when I am talking to them....I had to drive into town and > I got confused where i was.. I shouldn't have been driving....==================Jeanne -- Why in heaven's name doesn't your dr. have you on something like Xifaxan????? Before starting that, I had reached the point of being a blithering idiot. Didn't know what I was saying half the time, couldn't figure out how to write a check, definitely couldn't drive!!! The Xifaxan has given me back a quality of life I didn't dare dream of, and also kicked my Crohn's into deep deep remission.Demand that your dr. give

you something .... preferably Xifaxan (which won't keep you tied to the bathroom as lactulose does.)Regards,Carolyn B. in SC Jeanne

[Guest guest]

Carolyn I have been on Xifaxan for over a year now I went to get a refill and the INS.company denied it said I didn't have (HE)..Kind of funny when (HE) is on my Dr's. notes The Ins company is giving me a something else...The only reason I feel they denied it was the cost...I tried lactulose didn't help at all... Thanks alot Jeanne"Carolyn B." wrote: >> I know how you feel I have the same symptom..I am stage 4> last Monday & Tuesday was real bad..I call it brain fog..I cant think> straight or remember anything and my speech is slurred my kids can tell when I am talking to them....I had to drive into town and > I got confused where i was.. I shouldn't have been driving....==================Jeanne -- Why in heaven's name doesn't your dr. have you on something like Xifaxan????? Before starting that, I had reached the point of being a blithering idiot. Didn't know what I was saying half the time, couldn't figure out how to write a check, definitely couldn't drive!!! The Xifaxan has given me back a quality of life I didn't dare dream of, and also kicked my Crohn's into deep deep remission.Demand that your dr. give

you something .... preferably Xifaxan (which won't keep you tied to the bathroom as lactulose does.)Regards,Carolyn B. in SC Jeanne

[Guest guest]

I am in stage 4 with the same problems on the the waiting list. I can't drive at all its like driving in a tunnel, I don't eat much little at a time and I feel full, but they say I don't have ascites but I don't take laculose anymore it didn't help. I am just tired all the time anyway. I maybe have a few days a week that I have energy for 2 hours but thats about it. I can't remeber what I did last week really. In order to remember yesterday I have to think hard. And people say things to me but I miss most of what they said and don't remeber replying to them some things I say. Its frustrating, My days just run into each other just getting to the next one dealing with my kids school people husband whoever. So like just eat in small doses and thats all you can do. I never had a stomach really but now I too am bloated but my legs and hips are small, just my mid section it really bugs me and I don't eat much at all. Yesterday I had fruit, and a california rolll with no mayonaise, unagi and a 1 turkey mild sausage for dinner and a small baked potatoe with no fat butter and thats all, I am full and its the next morning whats that about

PSC 2001

Carolyn I have been on Xifaxan for over a year now I went to get a refill and the INS.company denied it said I didn't have (HE)..Kind of funny when (HE) is on my Dr's.

notes The Ins company is giving me a something else...The only reason I feel they denied it was the cost...I tried lactulose didn't help at all... Thanks alot Jeanne

" Carolyn B. " wrote:

>> I know how you feel I have the same symptom..I am stage 4

> last Monday & Tuesday was real bad..I call it brain fog..I cant think> straight or remember anything and my speech is slurred my kids can tell when I am talking to them....I had to drive into town and

> I got confused where i was.. I shouldn't have been driving....==================Jeanne -- Why in heaven's name doesn't your dr. have you on something like Xifaxan????? Before starting that, I had reached the point of being a blithering idiot. Didn't know what I

was saying half the time, couldn't figure out how to write a check, definitely couldn't drive!!! The Xifaxan has given me back a quality of life I didn't dare dream of, and also kicked my Crohn's into deep deep remission.

Demand that your dr. give

you something .... preferably Xifaxan (which won't keep you tied to the bathroom as lactulose does.)Regards,Carolyn B. in SC Jeanne