Re: SUPER R-Lipoic Acid....IV Glutathione,,,,LDN..Wesley Biopsy report

[Guest guest]

Hi Marna;

Please be cautious in recommending lipoic acid as a potential therapy in PSC.

There is evidence that lipoic acid is intimately involved in the pathogenesis of

primary biliary cirrhosis (PBC), a disease that affects small bile ducts

primarily in women:

_________________________________

Gastroenterology. 2003 Dec;125(6):1705-13.

Autoreactivity to lipoate and a conjugated form of lipoate in primary biliary

cirrhosis.

Bruggraber SF, Leung PS, Amano K, Quan C, Kurth MJ, Nantz MH, Benson GD, Van de

Water J, Luketic V, Roche TE, Ansari AA, Coppel RL, Gershwin ME

Division of Rheumatology, Allergy and Clinical Immunology, University of

California at Medical School, 95616, USA.

BACKGROUND & AIMS: Although considerable effort has been directed toward the

mapping of peptide epitopes by autoantibodies, the role of nonprotein molecules

has been less well studied. The immunodominant autoantigen in primary biliary

cirrhosis (PBC), E2 components of pyruvate dehydrogenase complexes (PDC-E2), has

a lipoate molecule bonded to the domain to which autoantibodies are directed.

METHODS: We examined sera from patients with PBC (n = 105), primary sclerosing

cholangitis (n = 70), and rheumatoid arthritis (n = 28) as well as healthy

volunteers (n = 43) for reactivity against lipoic acid. The lipoic acid hapten

specificity of the reactive antibodies in PBC sera was determined following

incubation of aliquots of the sera with human serum albumin (HSA), lipoylated

HSA (HSA-LA), PDC-E2, lipoylated PDC-E2, polyethylene glycol (PEG), lipoylated

PEG, free lipoic acid, and synthetic molecular mimics of lipoic acid. RESULTS:

Anti-lipoic acid specific antibodies were detected in 81% (79 of 97) of

antimitochondrial antibody (AMA)-positive patients with PBC but not in controls.

Two previously unreported specificities in AMA-positive sera that recognize free

lipoic acid and a carrier-conjugated form of lipoic acid were also identified.

CONCLUSIONS: We hypothesize that conjugated form(s) of native or xenobiotic

lipoic acid mimics contribute to the initiation and perpetuation of autoimmunity

by at first breaking self-tolerance and participating in subsequent determinant

spreading. The variability in the immunoreactive carrier/lipoate conjugates

provides an experimental framework on which potential mechanisms for the

breakdown of self-tolerance following exposure to xenobiotics can be

investigated. The data have implications for patients taking lipoic acid as a

dietary supplement. PMID: 14724823.

_________________________________

Clin Rev Allergy Immunol. 2009 Feb;36(1):23-9.

The chemical pathway to primary biliary cirrhosis.

Selmi C, Cocchi CA, Zuin M, Gershwin ME

Division of Internal Medicine and Liver Unit, San Paolo Hospital School of

Medicine, University of Milan, Milan, Italy.

Primary biliary cirrhosis (PBC) is a female predominant chronic disease of

autoimmune pathogenesis and unknown etiology, although data suggest that genetic

predisposition and environmental factors concur to its onset. Among nongenetic

factors, several lines of evidence spanning from geoepidemiology to experimental

findings support the role of xenobiotics, i.e., chemicals that are capable to

induce molecular mimicry through cross reactivity. Indeed, specific xenobiotics

are hypothesized to substitute lipoic acid residues on PBC-specific autoepitopes

thus triggering autoimmunity. This is supported by data obtained with patient

sera reactivities as well as animal models. The scenario is further complicated

by the possibility that xenobiotic-metabolizing bacteria might also play a role.

We will review the available evidence in this intriguing and rapidly growing

field of research and critically discuss its potential implications.

PMID: 18509764

________________________

J Immunol. 2005 May 1;174(9):5874-83.

Chemical xenobiotics and mitochondrial autoantigens in primary biliary

cirrhosis: identification of antibodies against a common environmental,

cosmetic, and food additive, 2-octynoic acid.

Amano K, Leung PS, Rieger R, Quan C, Wang X, Marik J, Suen YF, Kurth MJ, Nantz

MH, Ansari AA, Lam KS, Zeniya M, Matsuura E, Coppel RL, Gershwin ME

Division of Rheumatology, Allergy and Clinical Immunology, Genomic and

Biomedical Sciences Facility, University of California, , CA 95616, USA.

Emerging evidence has suggested environmental factors as causative agents in the

pathogenesis of primary biliary cirrhosis (PBC). We have hypothesized that in

PBC the lipoyl domain of the immunodominant E2 component of pyruvate

dehydrogenase (PDC-E2) is replaced by a chemical xenobiotic mimic, which is

sufficient to break self-tolerance. To address this hypothesis, based upon our

quantitative structure-activity relationship data, a total of 107 potential

xenobiotic mimics were coupled to the lysine residue of the immunodominant 15

amino acid peptide of the PDC-E2 inner lipoyl domain and spotted on microarray

slides. Sera from patients with PBC (n = 47), primary sclerosing cholangitis (n

= 15), and healthy volunteers (n = 20) were assayed for Ig reactivity. PBC sera

were subsequently absorbed with native lipoylated PDC-E2 peptide or a

xenobiotically modified PDC-E2 peptide, and the remaining reactivity analyzed.

Of the 107 xenobiotics, 33 had a significantly higher IgG reactivity against PBC

sera compared with control sera. In addition, 9 of those 33 compounds were more

reactive than the native lipoylated peptide. Following absorption, 8 of the 9

compounds demonstrated cross-reactivity with lipoic acid. One compound,

2-octynoic acid, was unique in both its quantitative structure-activity

relationship analysis and reactivity. PBC patient sera demonstrated high Ig

reactivity against 2-octynoic acid-PDC-E2 peptide. Not only does 2-octynoic acid

have the potential to modify PDC-E2 in vivo but importantly it was/is widely

used in the environment including perfumes, lipstick, and many common food

flavorings. PMID: 15845458.

_______________________

We really don't know whether lipoic acid supplements for PSC patients would be

beneficial, or create a more complex disease in certain patients?

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

Hi Marna;

Please be cautious in recommending lipoic acid as a potential therapy in PSC.

There is evidence that lipoic acid is intimately involved in the pathogenesis of

primary biliary cirrhosis (PBC), a disease that affects small bile ducts

primarily in women:

_________________________________

Gastroenterology. 2003 Dec;125(6):1705-13.

Autoreactivity to lipoate and a conjugated form of lipoate in primary biliary

cirrhosis.

Bruggraber SF, Leung PS, Amano K, Quan C, Kurth MJ, Nantz MH, Benson GD, Van de

Water J, Luketic V, Roche TE, Ansari AA, Coppel RL, Gershwin ME

Division of Rheumatology, Allergy and Clinical Immunology, University of

California at Medical School, 95616, USA.

BACKGROUND & AIMS: Although considerable effort has been directed toward the

mapping of peptide epitopes by autoantibodies, the role of nonprotein molecules

has been less well studied. The immunodominant autoantigen in primary biliary

cirrhosis (PBC), E2 components of pyruvate dehydrogenase complexes (PDC-E2), has

a lipoate molecule bonded to the domain to which autoantibodies are directed.

METHODS: We examined sera from patients with PBC (n = 105), primary sclerosing

cholangitis (n = 70), and rheumatoid arthritis (n = 28) as well as healthy

volunteers (n = 43) for reactivity against lipoic acid. The lipoic acid hapten

specificity of the reactive antibodies in PBC sera was determined following

incubation of aliquots of the sera with human serum albumin (HSA), lipoylated

HSA (HSA-LA), PDC-E2, lipoylated PDC-E2, polyethylene glycol (PEG), lipoylated

PEG, free lipoic acid, and synthetic molecular mimics of lipoic acid. RESULTS:

Anti-lipoic acid specific antibodies were detected in 81% (79 of 97) of

antimitochondrial antibody (AMA)-positive patients with PBC but not in controls.

Two previously unreported specificities in AMA-positive sera that recognize free

lipoic acid and a carrier-conjugated form of lipoic acid were also identified.

CONCLUSIONS: We hypothesize that conjugated form(s) of native or xenobiotic

lipoic acid mimics contribute to the initiation and perpetuation of autoimmunity

by at first breaking self-tolerance and participating in subsequent determinant

spreading. The variability in the immunoreactive carrier/lipoate conjugates

provides an experimental framework on which potential mechanisms for the

breakdown of self-tolerance following exposure to xenobiotics can be

investigated. The data have implications for patients taking lipoic acid as a

dietary supplement. PMID: 14724823.

_________________________________

Clin Rev Allergy Immunol. 2009 Feb;36(1):23-9.

The chemical pathway to primary biliary cirrhosis.

Selmi C, Cocchi CA, Zuin M, Gershwin ME

Division of Internal Medicine and Liver Unit, San Paolo Hospital School of

Medicine, University of Milan, Milan, Italy.

Primary biliary cirrhosis (PBC) is a female predominant chronic disease of

autoimmune pathogenesis and unknown etiology, although data suggest that genetic

predisposition and environmental factors concur to its onset. Among nongenetic

factors, several lines of evidence spanning from geoepidemiology to experimental

findings support the role of xenobiotics, i.e., chemicals that are capable to

induce molecular mimicry through cross reactivity. Indeed, specific xenobiotics

are hypothesized to substitute lipoic acid residues on PBC-specific autoepitopes

thus triggering autoimmunity. This is supported by data obtained with patient

sera reactivities as well as animal models. The scenario is further complicated

by the possibility that xenobiotic-metabolizing bacteria might also play a role.

We will review the available evidence in this intriguing and rapidly growing

field of research and critically discuss its potential implications.

PMID: 18509764

________________________

J Immunol. 2005 May 1;174(9):5874-83.

Chemical xenobiotics and mitochondrial autoantigens in primary biliary

cirrhosis: identification of antibodies against a common environmental,

cosmetic, and food additive, 2-octynoic acid.

Amano K, Leung PS, Rieger R, Quan C, Wang X, Marik J, Suen YF, Kurth MJ, Nantz

MH, Ansari AA, Lam KS, Zeniya M, Matsuura E, Coppel RL, Gershwin ME

Division of Rheumatology, Allergy and Clinical Immunology, Genomic and

Biomedical Sciences Facility, University of California, , CA 95616, USA.

Emerging evidence has suggested environmental factors as causative agents in the

pathogenesis of primary biliary cirrhosis (PBC). We have hypothesized that in

PBC the lipoyl domain of the immunodominant E2 component of pyruvate

dehydrogenase (PDC-E2) is replaced by a chemical xenobiotic mimic, which is

sufficient to break self-tolerance. To address this hypothesis, based upon our

quantitative structure-activity relationship data, a total of 107 potential

xenobiotic mimics were coupled to the lysine residue of the immunodominant 15

amino acid peptide of the PDC-E2 inner lipoyl domain and spotted on microarray

slides. Sera from patients with PBC (n = 47), primary sclerosing cholangitis (n

= 15), and healthy volunteers (n = 20) were assayed for Ig reactivity. PBC sera

were subsequently absorbed with native lipoylated PDC-E2 peptide or a

xenobiotically modified PDC-E2 peptide, and the remaining reactivity analyzed.

Of the 107 xenobiotics, 33 had a significantly higher IgG reactivity against PBC

sera compared with control sera. In addition, 9 of those 33 compounds were more

reactive than the native lipoylated peptide. Following absorption, 8 of the 9

compounds demonstrated cross-reactivity with lipoic acid. One compound,

2-octynoic acid, was unique in both its quantitative structure-activity

relationship analysis and reactivity. PBC patient sera demonstrated high Ig

reactivity against 2-octynoic acid-PDC-E2 peptide. Not only does 2-octynoic acid

have the potential to modify PDC-E2 in vivo but importantly it was/is widely

used in the environment including perfumes, lipstick, and many common food

flavorings. PMID: 15845458.

_______________________

We really don't know whether lipoic acid supplements for PSC patients would be

beneficial, or create a more complex disease in certain patients?

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

Hi Marna;

Please be cautious in recommending lipoic acid as a potential therapy in PSC.

There is evidence that lipoic acid is intimately involved in the pathogenesis of

primary biliary cirrhosis (PBC), a disease that affects small bile ducts

primarily in women:

_________________________________

Gastroenterology. 2003 Dec;125(6):1705-13.

Autoreactivity to lipoate and a conjugated form of lipoate in primary biliary

cirrhosis.

Bruggraber SF, Leung PS, Amano K, Quan C, Kurth MJ, Nantz MH, Benson GD, Van de

Water J, Luketic V, Roche TE, Ansari AA, Coppel RL, Gershwin ME

Division of Rheumatology, Allergy and Clinical Immunology, University of

California at Medical School, 95616, USA.

BACKGROUND & AIMS: Although considerable effort has been directed toward the

mapping of peptide epitopes by autoantibodies, the role of nonprotein molecules

has been less well studied. The immunodominant autoantigen in primary biliary

cirrhosis (PBC), E2 components of pyruvate dehydrogenase complexes (PDC-E2), has

a lipoate molecule bonded to the domain to which autoantibodies are directed.

METHODS: We examined sera from patients with PBC (n = 105), primary sclerosing

cholangitis (n = 70), and rheumatoid arthritis (n = 28) as well as healthy

volunteers (n = 43) for reactivity against lipoic acid. The lipoic acid hapten

specificity of the reactive antibodies in PBC sera was determined following

incubation of aliquots of the sera with human serum albumin (HSA), lipoylated

HSA (HSA-LA), PDC-E2, lipoylated PDC-E2, polyethylene glycol (PEG), lipoylated

PEG, free lipoic acid, and synthetic molecular mimics of lipoic acid. RESULTS:

Anti-lipoic acid specific antibodies were detected in 81% (79 of 97) of

antimitochondrial antibody (AMA)-positive patients with PBC but not in controls.

Two previously unreported specificities in AMA-positive sera that recognize free

lipoic acid and a carrier-conjugated form of lipoic acid were also identified.

CONCLUSIONS: We hypothesize that conjugated form(s) of native or xenobiotic

lipoic acid mimics contribute to the initiation and perpetuation of autoimmunity

by at first breaking self-tolerance and participating in subsequent determinant

spreading. The variability in the immunoreactive carrier/lipoate conjugates

provides an experimental framework on which potential mechanisms for the

breakdown of self-tolerance following exposure to xenobiotics can be

investigated. The data have implications for patients taking lipoic acid as a

dietary supplement. PMID: 14724823.

_________________________________

Clin Rev Allergy Immunol. 2009 Feb;36(1):23-9.

The chemical pathway to primary biliary cirrhosis.

Selmi C, Cocchi CA, Zuin M, Gershwin ME

Division of Internal Medicine and Liver Unit, San Paolo Hospital School of

Medicine, University of Milan, Milan, Italy.

Primary biliary cirrhosis (PBC) is a female predominant chronic disease of

autoimmune pathogenesis and unknown etiology, although data suggest that genetic

predisposition and environmental factors concur to its onset. Among nongenetic

factors, several lines of evidence spanning from geoepidemiology to experimental

findings support the role of xenobiotics, i.e., chemicals that are capable to

induce molecular mimicry through cross reactivity. Indeed, specific xenobiotics

are hypothesized to substitute lipoic acid residues on PBC-specific autoepitopes

thus triggering autoimmunity. This is supported by data obtained with patient

sera reactivities as well as animal models. The scenario is further complicated

by the possibility that xenobiotic-metabolizing bacteria might also play a role.

We will review the available evidence in this intriguing and rapidly growing

field of research and critically discuss its potential implications.

PMID: 18509764

________________________

J Immunol. 2005 May 1;174(9):5874-83.

Chemical xenobiotics and mitochondrial autoantigens in primary biliary

cirrhosis: identification of antibodies against a common environmental,

cosmetic, and food additive, 2-octynoic acid.

Amano K, Leung PS, Rieger R, Quan C, Wang X, Marik J, Suen YF, Kurth MJ, Nantz

MH, Ansari AA, Lam KS, Zeniya M, Matsuura E, Coppel RL, Gershwin ME

Division of Rheumatology, Allergy and Clinical Immunology, Genomic and

Biomedical Sciences Facility, University of California, , CA 95616, USA.

Emerging evidence has suggested environmental factors as causative agents in the

pathogenesis of primary biliary cirrhosis (PBC). We have hypothesized that in

PBC the lipoyl domain of the immunodominant E2 component of pyruvate

dehydrogenase (PDC-E2) is replaced by a chemical xenobiotic mimic, which is

sufficient to break self-tolerance. To address this hypothesis, based upon our

quantitative structure-activity relationship data, a total of 107 potential

xenobiotic mimics were coupled to the lysine residue of the immunodominant 15

amino acid peptide of the PDC-E2 inner lipoyl domain and spotted on microarray

slides. Sera from patients with PBC (n = 47), primary sclerosing cholangitis (n

= 15), and healthy volunteers (n = 20) were assayed for Ig reactivity. PBC sera

were subsequently absorbed with native lipoylated PDC-E2 peptide or a

xenobiotically modified PDC-E2 peptide, and the remaining reactivity analyzed.

Of the 107 xenobiotics, 33 had a significantly higher IgG reactivity against PBC

sera compared with control sera. In addition, 9 of those 33 compounds were more

reactive than the native lipoylated peptide. Following absorption, 8 of the 9

compounds demonstrated cross-reactivity with lipoic acid. One compound,

2-octynoic acid, was unique in both its quantitative structure-activity

relationship analysis and reactivity. PBC patient sera demonstrated high Ig

reactivity against 2-octynoic acid-PDC-E2 peptide. Not only does 2-octynoic acid

have the potential to modify PDC-E2 in vivo but importantly it was/is widely

used in the environment including perfumes, lipstick, and many common food

flavorings. PMID: 15845458.

_______________________

We really don't know whether lipoic acid supplements for PSC patients would be

beneficial, or create a more complex disease in certain patients?

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

http://care.diabetesjournals.org/cgi/content/full/30/12/e131#R1

I agree ,,,the above article is even scarier.

Then, I know they are doing studies on NAC and IV alpha lipoic acid is PSC kids.

Here is a supplement that highlights it's support of immune function and a

healthy liver.

http://www.vitasprings.com/alphalipoicacid-300mg-120.html

It is frustrating a gamble for each patient or parent to choose which studies or

physicians to trust. Prominent physicians and PHD's have told me Urso was

" worthless " .

Yet other physicians have prescribed it because it makes the liver functions go

down and as one physician said,,,makes the doctor feel better as the liver

continues to deteriorate.

All I can say is Wesley's liver is supposedly going from stage 3 to barely stage

1 or 2. He has not been on Urso for 5 years and never on an antibiotic. And had

PSC for 13 years! Along with UC.

HE IS ON EVERY PRAYER LIST IN THE UNITED STATES THERE IS A GOD AND HE DOES

HEAL

I struggle with this as do all the PSC patients and parents....

[Guest guest]

http://care.diabetesjournals.org/cgi/content/full/30/12/e131#R1

I agree ,,,the above article is even scarier.

Then, I know they are doing studies on NAC and IV alpha lipoic acid is PSC kids.

Here is a supplement that highlights it's support of immune function and a

healthy liver.

http://www.vitasprings.com/alphalipoicacid-300mg-120.html

It is frustrating a gamble for each patient or parent to choose which studies or

physicians to trust. Prominent physicians and PHD's have told me Urso was

" worthless " .

Yet other physicians have prescribed it because it makes the liver functions go

down and as one physician said,,,makes the doctor feel better as the liver

continues to deteriorate.

All I can say is Wesley's liver is supposedly going from stage 3 to barely stage

1 or 2. He has not been on Urso for 5 years and never on an antibiotic. And had

PSC for 13 years! Along with UC.

HE IS ON EVERY PRAYER LIST IN THE UNITED STATES THERE IS A GOD AND HE DOES

HEAL

I struggle with this as do all the PSC patients and parents....

[Guest guest]

http://care.diabetesjournals.org/cgi/content/full/30/12/e131#R1

I agree ,,,the above article is even scarier.

Then, I know they are doing studies on NAC and IV alpha lipoic acid is PSC kids.

Here is a supplement that highlights it's support of immune function and a

healthy liver.

http://www.vitasprings.com/alphalipoicacid-300mg-120.html

It is frustrating a gamble for each patient or parent to choose which studies or

physicians to trust. Prominent physicians and PHD's have told me Urso was

" worthless " .

Yet other physicians have prescribed it because it makes the liver functions go

down and as one physician said,,,makes the doctor feel better as the liver

continues to deteriorate.

All I can say is Wesley's liver is supposedly going from stage 3 to barely stage

1 or 2. He has not been on Urso for 5 years and never on an antibiotic. And had

PSC for 13 years! Along with UC.

HE IS ON EVERY PRAYER LIST IN THE UNITED STATES THERE IS A GOD AND HE DOES

HEAL

I struggle with this as do all the PSC patients and parents....

[Guest guest]

Please show us were MAYO has stated this?   (See below statement in queston)

Thanks....I started on Urso a month and a half ago and now I have ascites...I'm

soooo confused.

Don B PSC / UC 11-08

Now all the other patients with Wesley's disease are on Ursodiol.... I refuse to

give it to Wesley ...espescially after the Mayo Clinic came out with a study

saying it caused twice as much damage to the people who took it ,,,,for

example....twice as many died.....three times as many had esophageal

varices.....

>

>

>

>

>

>

>

>

>

>

> 

>

>

>

>

>

>

>     

>             Wesley just went from stage 3 PSC ( Biopsy

> done June 2006 ) to barely 1-2 ,,,almost no inflammation.

>

>

>

> Wesley has PSC,,,,Primary Sclerosing Cholangitis, ,,I have

> vanity

>

>

>

> I research EVERYTHING.. ...and Dr. Perricone is the man on

> skin....well Alpha Lipoic Acid makes me have great skin.

>

>

>

> Sooo in ordering the R-Lipoic Acid....I took one just as

> Wesley did and the next morning woke with glowing skin.

>

>

>

> Wesley is 14 and it keeps him from having acne....that and

> B5 ( Pantothenic Acid ) ....see these are powerful

> anti-inflammatories . Alpha Lipoic Acid  makes glutathione.

> ...glutathione is sold to asian women to have whiter

> skin....and Hollywood types....like Beyonce, Janet

> .....

>

>

>

> Now all the other patients with Wesley's disease are on

> Ursodiol.... I refuse to give it to Wesley ...espescially

> after the Mayo Clinic came out with a study saying it caused

> twice as much damage to the people who took it ,,,,for

> example....twice as many died.....three times as many had

> esophageal varices.....

>

>

>

> It reduces bile acids....... ...well Wesley's are 4.5

> ...Normal is 4.5-19.5.   Also ....Wesley had a biopsy in

> June of 2006 showing 3rd stage liver disease..... now he

> just had a biopsy March 9, 2009 and it showed barely stage

> 1-2.

>

>

>

> THE ONLY DIFFERENCE IS NO URSO......IV GLUTATHIONE. ....AND

> ALPHA LIPOIC ACID.....I ALSO REFUSE TO GIVE CIPRO AND FLAGYL

> AS THEY ARE NEUROTOXIC.. ...WESLEY STAYS INFECTION FREE WITH

> PRIMAL DEFENSE ULTRA PROBIOTICS.

>

>

>

> Now he does have a large spleen...12cm. ......soo he is

> definately not right and his liver functions are

> elevated.... BECAUSE HE HAS HAD PSC since HE WAS 1-2 years

> old....definative biopsy at age 3. Along with Ulcerative

> Colitis.

>

>

>

> OK,,,,I guess that was a bit much...

>

>

>

> I am a worried mom that is doing everything I can....he

> started LDN 8 days ago....( so did I )....we did not even

> taper up....He started at 3mg.....I started at 4.5 mg. We

> sleep fine. Never had a problem.

>

>

>

> Wesley had active Ulcerative Colitis and a low hemoglobin..

> .one normal BM a day with no blood but on biopsy it was

> chronic active ulcerative colitis sooooo I wanted his immune

> system working right ASAP!

>

>

>

> I see Dr. Lobritto at -Stanley Columbia

> University and Scoliosis Ortho Dr. Vitale ,,,March

> 26-April 4.....in New York, NY .....I am going to lay the

> LDN on the line and the IV glutathione and see what they

> think....they are supposed to be progressive.

>

>

>

> JOHN'S HOPKINS WAS NOT ! I could not even tell them

> what I do. When his liver biopsy came back so good compared

> to 3 and a half years ago,,,they said maybe it was a bad

> sample.

>

>

>

> What kind of crap is that???????? ?? And if so....they

> should have at least did an MRI. .....

>

>

>

> They saw almost no inflammation in his liver. :)

>

>

>

> MARNA

>

>

>

>

> 

>

>       

>

>     

>     

>    

>      

>    

>    

>

>

>

>

>    

>

>

>

>

>    

>    

>

>

>    

>    

>    

>

>

[Guest guest]

Please show us were MAYO has stated this?   (See below statement in queston)

Thanks....I started on Urso a month and a half ago and now I have ascites...I'm

soooo confused.

Don B PSC / UC 11-08

Now all the other patients with Wesley's disease are on Ursodiol.... I refuse to

give it to Wesley ...espescially after the Mayo Clinic came out with a study

saying it caused twice as much damage to the people who took it ,,,,for

example....twice as many died.....three times as many had esophageal

varices.....

>

>

>

>

>

>

>

>

>

>

> 

>

>

>

>

>

>

>     

>             Wesley just went from stage 3 PSC ( Biopsy

> done June 2006 ) to barely 1-2 ,,,almost no inflammation.

>

>

>

> Wesley has PSC,,,,Primary Sclerosing Cholangitis, ,,I have

> vanity

>

>

>

> I research EVERYTHING.. ...and Dr. Perricone is the man on

> skin....well Alpha Lipoic Acid makes me have great skin.

>

>

>

> Sooo in ordering the R-Lipoic Acid....I took one just as

> Wesley did and the next morning woke with glowing skin.

>

>

>

> Wesley is 14 and it keeps him from having acne....that and

> B5 ( Pantothenic Acid ) ....see these are powerful

> anti-inflammatories . Alpha Lipoic Acid  makes glutathione.

> ...glutathione is sold to asian women to have whiter

> skin....and Hollywood types....like Beyonce, Janet

> .....

>

>

>

> Now all the other patients with Wesley's disease are on

> Ursodiol.... I refuse to give it to Wesley ...espescially

> after the Mayo Clinic came out with a study saying it caused

> twice as much damage to the people who took it ,,,,for

> example....twice as many died.....three times as many had

> esophageal varices.....

>

>

>

> It reduces bile acids....... ...well Wesley's are 4.5

> ...Normal is 4.5-19.5.   Also ....Wesley had a biopsy in

> June of 2006 showing 3rd stage liver disease..... now he

> just had a biopsy March 9, 2009 and it showed barely stage

> 1-2.

>

>

>

> THE ONLY DIFFERENCE IS NO URSO......IV GLUTATHIONE. ....AND

> ALPHA LIPOIC ACID.....I ALSO REFUSE TO GIVE CIPRO AND FLAGYL

> AS THEY ARE NEUROTOXIC.. ...WESLEY STAYS INFECTION FREE WITH

> PRIMAL DEFENSE ULTRA PROBIOTICS.

>

>

>

> Now he does have a large spleen...12cm. ......soo he is

> definately not right and his liver functions are

> elevated.... BECAUSE HE HAS HAD PSC since HE WAS 1-2 years

> old....definative biopsy at age 3. Along with Ulcerative

> Colitis.

>

>

>

> OK,,,,I guess that was a bit much...

>

>

>

> I am a worried mom that is doing everything I can....he

> started LDN 8 days ago....( so did I )....we did not even

> taper up....He started at 3mg.....I started at 4.5 mg. We

> sleep fine. Never had a problem.

>

>

>

> Wesley had active Ulcerative Colitis and a low hemoglobin..

> .one normal BM a day with no blood but on biopsy it was

> chronic active ulcerative colitis sooooo I wanted his immune

> system working right ASAP!

>

>

>

> I see Dr. Lobritto at -Stanley Columbia

> University and Scoliosis Ortho Dr. Vitale ,,,March

> 26-April 4.....in New York, NY .....I am going to lay the

> LDN on the line and the IV glutathione and see what they

> think....they are supposed to be progressive.

>

>

>

> JOHN'S HOPKINS WAS NOT ! I could not even tell them

> what I do. When his liver biopsy came back so good compared

> to 3 and a half years ago,,,they said maybe it was a bad

> sample.

>

>

>

> What kind of crap is that???????? ?? And if so....they

> should have at least did an MRI. .....

>

>

>

> They saw almost no inflammation in his liver. :)

>

>

>

> MARNA

>

>

>

>

> 

>

>       

>

>     

>     

>    

>      

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>    

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[Guest guest]

Please show us were MAYO has stated this?   (See below statement in queston)

Thanks....I started on Urso a month and a half ago and now I have ascites...I'm

soooo confused.

Don B PSC / UC 11-08

Now all the other patients with Wesley's disease are on Ursodiol.... I refuse to

give it to Wesley ...espescially after the Mayo Clinic came out with a study

saying it caused twice as much damage to the people who took it ,,,,for

example....twice as many died.....three times as many had esophageal

varices.....

>

>

>

>

>

>

>

>

>

>

> 

>

>

>

>

>

>

>     

>             Wesley just went from stage 3 PSC ( Biopsy

> done June 2006 ) to barely 1-2 ,,,almost no inflammation.

>

>

>

> Wesley has PSC,,,,Primary Sclerosing Cholangitis, ,,I have

> vanity

>

>

>

> I research EVERYTHING.. ...and Dr. Perricone is the man on

> skin....well Alpha Lipoic Acid makes me have great skin.

>

>

>

> Sooo in ordering the R-Lipoic Acid....I took one just as

> Wesley did and the next morning woke with glowing skin.

>

>

>

> Wesley is 14 and it keeps him from having acne....that and

> B5 ( Pantothenic Acid ) ....see these are powerful

> anti-inflammatories . Alpha Lipoic Acid  makes glutathione.

> ...glutathione is sold to asian women to have whiter

> skin....and Hollywood types....like Beyonce, Janet

> .....

>

>

>

> Now all the other patients with Wesley's disease are on

> Ursodiol.... I refuse to give it to Wesley ...espescially

> after the Mayo Clinic came out with a study saying it caused

> twice as much damage to the people who took it ,,,,for

> example....twice as many died.....three times as many had

> esophageal varices.....

>

>

>

> It reduces bile acids....... ...well Wesley's are 4.5

> ...Normal is 4.5-19.5.   Also ....Wesley had a biopsy in

> June of 2006 showing 3rd stage liver disease..... now he

> just had a biopsy March 9, 2009 and it showed barely stage

> 1-2.

>

>

>

> THE ONLY DIFFERENCE IS NO URSO......IV GLUTATHIONE. ....AND

> ALPHA LIPOIC ACID.....I ALSO REFUSE TO GIVE CIPRO AND FLAGYL

> AS THEY ARE NEUROTOXIC.. ...WESLEY STAYS INFECTION FREE WITH

> PRIMAL DEFENSE ULTRA PROBIOTICS.

>

>

>

> Now he does have a large spleen...12cm. ......soo he is

> definately not right and his liver functions are

> elevated.... BECAUSE HE HAS HAD PSC since HE WAS 1-2 years

> old....definative biopsy at age 3. Along with Ulcerative

> Colitis.

>

>

>

> OK,,,,I guess that was a bit much...

>

>

>

> I am a worried mom that is doing everything I can....he

> started LDN 8 days ago....( so did I )....we did not even

> taper up....He started at 3mg.....I started at 4.5 mg. We

> sleep fine. Never had a problem.

>

>

>

> Wesley had active Ulcerative Colitis and a low hemoglobin..

> .one normal BM a day with no blood but on biopsy it was

> chronic active ulcerative colitis sooooo I wanted his immune

> system working right ASAP!

>

>

>

> I see Dr. Lobritto at -Stanley Columbia

> University and Scoliosis Ortho Dr. Vitale ,,,March

> 26-April 4.....in New York, NY .....I am going to lay the

> LDN on the line and the IV glutathione and see what they

> think....they are supposed to be progressive.

>

>

>

> JOHN'S HOPKINS WAS NOT ! I could not even tell them

> what I do. When his liver biopsy came back so good compared

> to 3 and a half years ago,,,they said maybe it was a bad

> sample.

>

>

>

> What kind of crap is that???????? ?? And if so....they

> should have at least did an MRI. .....

>

>

>

> They saw almost no inflammation in his liver. :)

>

>

>

> MARNA

>

>

>

>

> 

>

>       

>

>     

>     

>    

>      

>    

>    

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>

[Guest guest]

I just wanted to add my two cents here. First you should always listen to what your doctor is telling you and if you are not comfortable get a second opinion. I believe the Mayo study was in regards to high dose URSO, which I can't quite recall the dosage to be considered high but for a lot of people it is about 2000-2500 mg/day.

I still think there is value to URSO because it does keep most peoples liver numbers down and the study at Mayo was focused on stopping or reversing the progression of PSC. I would be interested to see if a study looked at URSO in regards to the length of time before transplant.

I think with the right dosage of URSO it may increase the amount of time before a transplant is required, but that is just my personal speculation.

-Dave, Canada

PSC 07'

Subject: Re: SUPER R-Lipoic Acid....IV Glutathione,,,,LDN..Wesley Biopsy reportTo: Cc: moranclan07@...Date: Saturday, March 21, 2009, 9:24 AM

Please show us were MAYO has stated this? (See below statement in queston) Thanks....I started on Urso a month and a half ago and now I have ascites...I' m soooo confused.Don B PSC / UC 11-08Now all the other patients with Wesley's disease are on Ursodiol.... I refuse to give it to Wesley ...espescially after the Mayo Clinic came out with a study saying it caused twice as much damage to the people who took it ,,,,for example....twice as many died.....three times as many had esophageal varices.....> > > > > > > > > > > > > > > > > > > Wesley just went from stage 3 PSC ( Biopsy> done June 2006 ) to barely 1-2 ,,,almost no inflammation.> > > > Wesley has PSC,,,,Primary

Sclerosing Cholangitis, ,,I have> vanity > > > > I research EVERYTHING.. ...and Dr. Perricone is the man on> skin....well Alpha Lipoic Acid makes me have great skin. > > > > Sooo in ordering the R-Lipoic Acid....I took one just as> Wesley did and the next morning woke with glowing skin. > > > > Wesley is 14 and it keeps him from having acne....that and> B5 ( Pantothenic Acid ) ....see these are powerful> anti-inflammatories . Alpha Lipoic Acid makes glutathione.> ...glutathione is sold to asian women to have whiter> skin....and Hollywood types....like Beyonce, Janet> .....> > > > Now all the other patients with Wesley's disease are on> Ursodiol.... I refuse to give it to Wesley ...espescially> after the Mayo Clinic came out with a study saying it

caused> twice as much damage to the people who took it ,,,,for> example....twice as many died.....three times as many had> esophageal varices.....> > > > It reduces bile acids....... ...well Wesley's are 4.5> ...Normal is 4.5-19.5. Also ....Wesley had a biopsy in> June of 2006 showing 3rd stage liver disease..... now he> just had a biopsy March 9, 2009 and it showed barely stage> 1-2. > > > > THE ONLY DIFFERENCE IS NO URSO......IV GLUTATHIONE. ....AND> ALPHA LIPOIC ACID.....I ALSO REFUSE TO GIVE CIPRO AND FLAGYL> AS THEY ARE NEUROTOXIC.. ...WESLEY STAYS INFECTION FREE WITH> PRIMAL DEFENSE ULTRA PROBIOTICS. > > > > Now he does have a large spleen...12cm. ......soo he is> definately not right and his liver functions are> elevated.... BECAUSE HE HAS HAD PSC since HE WAS

1-2 years> old....definative biopsy at age 3. Along with Ulcerative> Colitis. > > > > OK,,,,I guess that was a bit much... > > > > I am a worried mom that is doing everything I can....he> started LDN 8 days ago....( so did I )....we did not even> taper up....He started at 3mg.....I started at 4.5 mg. We> sleep fine. Never had a problem. > > > > Wesley had active Ulcerative Colitis and a low hemoglobin..> .one normal BM a day with no blood but on biopsy it was> chronic active ulcerative colitis sooooo I wanted his immune> system working right ASAP! > > > > I see Dr. Lobritto at -Stanley Columbia> University and Scoliosis Ortho Dr. Vitale ,,,March> 26-April 4.....in New York, NY .....I am going to lay the> LDN on the line and the IV glutathione

and see what they> think....they are supposed to be progressive. > > > > JOHN'S HOPKINS WAS NOT ! I could not even tell them> what I do. When his liver biopsy came back so good compared> to 3 and a half years ago,,,they said maybe it was a bad> sample. > > > > What kind of crap is that???????? ?? And if so....they> should have at least did an MRI. .....> > > > They saw almost no inflammation in his liver. :) > > > > MARNA > > > > > > > > > > > > > > > > > > > > > >

> > > > > > > > > >

[Guest guest]

M a r n a,

 

I like URSO, It has reduced my LFT numbers and does not causes me any side effects. The only thing I dislike about it is the cost. I was started on it in 1999 when my LFT numbers started to rise dramatically. I was put on CIPRO and Flagyl (sp?) for a couple of months, which brought my LFT numbers back to just above " normal " and started on URSO. Although the nobodies were stopped the URSO was continued. I have tried twice to stop URSO and both times my LFT numbers rose after the first month.

 

Although I am not planning to stop URSO, I would like to try IV GLUTATHIONE, but were can I get it?  I am not a nurse and don't feel comfortable taking anything intravenously without a doctor or nurse present.

 

Ian (52) PSC 89 

Wesley just went from stage 3 PSC ( Biopsy done June 2006 ) to barely 1-2 ,,,almost no inflammation.Wesley has PSC,,,,Primary Sclerosing Cholangitis,,,I have vanity I research EVERYTHING.....and Dr. Perricone is the man on skin....well Alpha Lipoic Acid makes me have great skin.

Sooo in ordering the R-Lipoic Acid....I took one just as Wesley did and the next morning woke with glowing skin. Wesley is 14 and it keeps him from having acne....that and B5 ( Pantothenic Acid ) ....see these are powerful anti-inflammatories. Alpha Lipoic Acid makes glutathione....glutathione is sold to asian women to have whiter skin....and Hollywood types....like Beyonce, Janet .....

Now all the other patients with Wesley's disease are on Ursodiol....I refuse to give it to Wesley ...espescially after the Mayo Clinic came out with a study saying it caused twice as much damage to the people who took it ,,,,for example....twice as many died.....three times as many had esophageal varices.....

It reduces bile acids..........well Wesley's are 4.5 ...Normal is 4.5-19.5. Also ....Wesley had a biopsy in June of 2006 showing 3rd stage liver disease.....now he just had a biopsy March 9, 2009 and it showed barely stage 1-2.

THE ONLY DIFFERENCE IS NO URSO......IV GLUTATHIONE.....AND ALPHA LIPOIC ACID.....I ALSO REFUSE TO GIVE CIPRO AND FLAGYL AS THEY ARE NEUROTOXIC.....WESLEY STAYS INFECTION FREE WITH PRIMAL DEFENSE ULTRA PROBIOTICS.

Now he does have a large spleen...12cm.......soo he is definately not right and his liver functions are elevated....BECAUSE HE HAS HAD PSC since HE WAS 1-2 years old....definative biopsy at age 3. Along with Ulcerative Colitis.

OK,,,,I guess that was a bit much... I am a worried mom that is doing everything I can....he started LDN 8 days ago....( so did I )....we did not even taper up....He started at 3mg.....I started at 4.5 mg. We sleep fine. Never had a problem.

Wesley had active Ulcerative Colitis and a low hemoglobin...one normal BM a day with no blood but on biopsy it was chronic active ulcerative colitis sooooo I wanted his immune system working right ASAP! I see Dr. Lobritto at -Stanley Columbia University and Scoliosis Ortho Dr. Vitale ,,,March 26-April 4.....in New York, NY .....I am going to lay the LDN on the line and the IV glutathione and see what they think....they are supposed to be progressive.

JOHN'S HOPKINS WAS NOT ! I could not even tell them what I do. When his liver biopsy came back so good compared to 3 and a half years ago,,,they said maybe it was a bad sample. What kind of crap is that?????????? And if so....they should have at least did an MRI. .....

They saw almost no inflammation in his liver. :) MARNA

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com