STUDY ** High-Dose Ursodeoxycholic Acid Fails in PSC**

[Guest guest]

I was a stage II category, and on UCDA, 1500mg/d during the study, too, and did not meet any of the the endpoints, also. The only effects i can think of, but not so sure if they can be specified as "adverse", were continous episodes of "very closely" spaced cholangitis attacks [fever, chills, nuasea----]. I was mainly sick all the time. And a high grade, intense URQ pain.Very interestingly, those cholangitis flares, did go down dramatically after stopping Urso. With regard to the pain, it did much improve right after, but i am not able to estimate how much since i was started on a continous new pain med~2mo after the stop. Whatever i was taking before was not helping the pain. Withregard to my LF's., there was a great imrovement, specially with the ALK, ALT/AST. They went a little above normal, but surprisingly, did go up again during the last couple of years, but in less amounts

than the numbers before the study.

Subject: Re: STUDY ** High-Dose Ursodeoxycholic Acid Fails in PSC**To: Date: Thursday, November 6, 2008, 5:50 PM

Given the fact the article states 60% of the 150 patients were stage I or II, while at the same time 79 patients met defined endpoints during the study I think at least some crossover of adverse effects to Stage I and Stage II patients has to be assumed.In my case I was in the Stage III/IV category, was on the real medication during the study and did not meet any of the endpoints. Assuming there were others like me that would also support the conclusion that at least some of the patients experiencing adverse effects were Stage I/II. in Seattle>> Thanks for posting this Barb. Can anyone determine from the results > presented so far, whether the adverse effects of urso were confined to > the patients

in stage IV PSC, or were spread across all stages of the > disease? I would hope that in the peer-reviewed paper they consider the > relationship between frequency of adverse effects and stage of the > disease.> > Dave > (father of (23), PSC 07/03; UC 08/03)>

[Guest guest]

Hi Marna

Thanks for your interestng post. I am so impressed with your

research into PSC and going with what you feel is best for your son.

Its great that all is going well.

I am interested that you will never give him Cipro or Flagyl.

I had a cholangitis attack over a year ago, and between vomiting,

fainting and severe pain asked the Dr if there was anything apart

from

IV antibiotics to help me get through it....he said yes, you could

very

well die!!

I made a full recovery with Cipro. I drink at least 2 litres of

water, eat very little meat, lots of vegetables,take Omega3 high in

DHA, walk at least 30 mins a day. Have very little stress, but still

had a bile duct bacterial infection, .

Hoepfully your son will never have a bacterial infection, I am

interested in what process you will follow if you do find yourself in

that awful situation.

Thanks again for your interesting post.

from the bottom of the world in New Zealand

>

.. I WILL NEVER

> GIVE HIM CIPRO OR FLAGYL which are very damaging chemotherapeutic

> agents. ( Just read a little of the quinolones yahoo group ! )

>

> Everything good has come from my research and everything bad has

> come from the gastro's. Sad but true.

>

> IV Glutathione has been a miracle. Wesley highly recommends it !

His

> energy has skyrocketed! His liver functions which are typically in

> the 500-800's went to normal for the first time in his 12 years of

> being diagnosed with PSC/UC at age 3....symptomatic since 1 year

old

> vaccines.

>

> He also takes 4000mg of folic acid, alpha lipoic acid, B-vitamins,

> Lysine, arginine, vitamin D-3 , Vitamin A, Betaine HCl,

[Guest guest]

Hi Marna

Thanks for your interestng post. I am so impressed with your

research into PSC and going with what you feel is best for your son.

Its great that all is going well.

I am interested that you will never give him Cipro or Flagyl.

I had a cholangitis attack over a year ago, and between vomiting,

fainting and severe pain asked the Dr if there was anything apart

from

IV antibiotics to help me get through it....he said yes, you could

very

well die!!

I made a full recovery with Cipro. I drink at least 2 litres of

water, eat very little meat, lots of vegetables,take Omega3 high in

DHA, walk at least 30 mins a day. Have very little stress, but still

had a bile duct bacterial infection, .

Hoepfully your son will never have a bacterial infection, I am

interested in what process you will follow if you do find yourself in

that awful situation.

Thanks again for your interesting post.

from the bottom of the world in New Zealand

>

.. I WILL NEVER

> GIVE HIM CIPRO OR FLAGYL which are very damaging chemotherapeutic

> agents. ( Just read a little of the quinolones yahoo group ! )

>

> Everything good has come from my research and everything bad has

> come from the gastro's. Sad but true.

>

> IV Glutathione has been a miracle. Wesley highly recommends it !

His

> energy has skyrocketed! His liver functions which are typically in

> the 500-800's went to normal for the first time in his 12 years of

> being diagnosed with PSC/UC at age 3....symptomatic since 1 year

old

> vaccines.

>

> He also takes 4000mg of folic acid, alpha lipoic acid, B-vitamins,

> Lysine, arginine, vitamin D-3 , Vitamin A, Betaine HCl,

[Guest guest]

-----Original

Message-----

I WILL NEVER GIVE

HIM CIPRO OR FLAGYL

I’m not trying

to start anything or upset anyone, just speaking from my own experience. It’s just good ole common sense

not to paint any picture in strict black and white terms, especially with

PSC. Cipro is the first line of

defense when a patient has a Cholangitis attack. Taking it before symptoms get too bad

has been able (in many people) to stop it cold in its tracks. One thing is for sure, a good doctor

will use any and every tool in his bag of tricks. I can not tell you how many times

Ken’s life has been saved – actually brought back from the brink of

death by using drugs I never would have thought were safe.

I’m a very firm

believer in knowledge is power, but I also believe it best not to limit or tie

a doctor’s hands with zero tolerance from it comes to any drugs. Penny in this group will tell you, she

was at deaths door when her doctor prescribed one particular drug. She totally lost her hearing and balance, now she

walks with a cane because of one antibotic, but she’s here, she

didn’t die! She’s seen

the birth of two grandchildren and traveled to Europe several times.

I

guess what I’m saying is….never say never. You’ll don’t know exactly

what you will do, until trouble knocks on your door.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

[Guest guest]

Hi ,

I to have had some very positive results from taking CIPRO, in 1999 my LFT numbers were starting to rise dramatically and a couple of months brought the numbers back down, but I noticed from reading post that not everyone reacts to all medicines the same, some need much lower dosages and other have bad reactions and should not be taking that medicine. Unfortunately I don't know if you can tell what a person's reaction will be to a medicine, or herb, before they take it. I've have had positive results from taking, CIPRO, URSO, warfarin,and synthroid, but a negative reaction to methotrexate and I usually only need a small dose of pain killer when ever I have pain.

Ian (52) PSC 89

Hi MarnaThanks for your interestng post. I am so impressed with your research into PSC and going with what you feel is best for your son. Its great that all is going well.I am interested that you will never give him Cipro or Flagyl.

I had a cholangitis attack over a year ago, and between vomiting, fainting and severe pain asked the Dr if there was anything apart from IV antibiotics to help me get through it....he said yes, you could very

well die!!I made a full recovery with Cipro. I drink at least 2 litres of water, eat very little meat, lots of vegetables,take Omega3 high in DHA, walk at least 30 mins a day. Have very little stress, but still

had a bile duct bacterial infection, .Hoepfully your son will never have a bacterial infection, I am interested in what process you will follow if you do find yourself in that awful situation.Thanks again for your interesting post.

from the bottom of the world in New Zealand >. I WILL NEVER > GIVE HIM CIPRO OR FLAGYL which are very damaging chemotherapeutic > agents. ( Just read a little of the quinolones yahoo group ! ) > > Everything good has come from my research and everything bad has

> come from the gastro's. Sad but true. > > IV Glutathione has been a miracle. Wesley highly recommends it ! His > energy has skyrocketed! His liver functions which are typically in > the 500-800's went to normal for the first time in his 12 years of

> being diagnosed with PSC/UC at age 3....symptomatic since 1 year old > vaccines. > > He also takes 4000mg of folic acid, alpha lipoic acid, B-vitamins, > Lysine, arginine, vitamin D-3 , Vitamin A, Betaine HCl,

-- Ian Cribb P.Eng.

[Guest guest]

Hi ,

I to have had some very positive results from taking CIPRO, in 1999 my LFT numbers were starting to rise dramatically and a couple of months brought the numbers back down, but I noticed from reading post that not everyone reacts to all medicines the same, some need much lower dosages and other have bad reactions and should not be taking that medicine. Unfortunately I don't know if you can tell what a person's reaction will be to a medicine, or herb, before they take it. I've have had positive results from taking, CIPRO, URSO, warfarin,and synthroid, but a negative reaction to methotrexate and I usually only need a small dose of pain killer when ever I have pain.

Ian (52) PSC 89

Hi MarnaThanks for your interestng post. I am so impressed with your research into PSC and going with what you feel is best for your son. Its great that all is going well.I am interested that you will never give him Cipro or Flagyl.

I had a cholangitis attack over a year ago, and between vomiting, fainting and severe pain asked the Dr if there was anything apart from IV antibiotics to help me get through it....he said yes, you could very

well die!!I made a full recovery with Cipro. I drink at least 2 litres of water, eat very little meat, lots of vegetables,take Omega3 high in DHA, walk at least 30 mins a day. Have very little stress, but still

had a bile duct bacterial infection, .Hoepfully your son will never have a bacterial infection, I am interested in what process you will follow if you do find yourself in that awful situation.Thanks again for your interesting post.

from the bottom of the world in New Zealand >. I WILL NEVER > GIVE HIM CIPRO OR FLAGYL which are very damaging chemotherapeutic > agents. ( Just read a little of the quinolones yahoo group ! ) > > Everything good has come from my research and everything bad has

> come from the gastro's. Sad but true. > > IV Glutathione has been a miracle. Wesley highly recommends it ! His > energy has skyrocketed! His liver functions which are typically in > the 500-800's went to normal for the first time in his 12 years of

> being diagnosed with PSC/UC at age 3....symptomatic since 1 year old > vaccines. > > He also takes 4000mg of folic acid, alpha lipoic acid, B-vitamins, > Lysine, arginine, vitamin D-3 , Vitamin A, Betaine HCl,

-- Ian Cribb P.Eng.

[Guest guest]

HIGH DOSE PROBIOTICS HAVE KEPT WESLEY INFECTION FREE. HE HAS NEVER

HAD TO HAVE AN ANTIBIOTIC EVEN FOR A COLD AND HE HAS HAD PSC/UC FOR

ALMOST 13 YEARS. HE IS A RARE CHILD THAT WAS DIAGNOSED AT THREE BUT

SYMPTOMATIC SINCE AGE 1 YEAR. MORE AND MORE PROBIOTICS ARE USED IN

PLACE OF ANTIBIOTICS. I PRAY THAT IF WESLEY NEEDED ONE THERE WOULD BE

A SAFE ONE.

MARNA

http://wordpress.com/tag/terminal-illness/

> >

> . I WILL NEVER

> > GIVE HIM CIPRO OR FLAGYL which are very damaging chemotherapeutic

> > agents. ( Just read a little of the quinolones yahoo group ! )

> >

> > Everything good has come from my research and everything bad has

> > come from the gastro's. Sad but true.

> >

> > IV Glutathione has been a miracle. Wesley highly recommends it !

> His

> > energy has skyrocketed! His liver functions which are typically

in

> > the 500-800's went to normal for the first time in his 12 years

of

> > being diagnosed with PSC/UC at age 3....symptomatic since 1 year

> old

> > vaccines.

> >

> > He also takes 4000mg of folic acid, alpha lipoic acid, B-

vitamins,

> > Lysine, arginine, vitamin D-3 , Vitamin A, Betaine HCl,

>