Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Theresa, Welcome to the group. We are all ignorant and searching for answers. I don't think the fatigue is caused by elevated ammonia levels, because many of us have fatigue without the brain fog. The IV GLUTATHIONE has not been FDA approved (they say they don't require FDA approval). M a r n a believes it has reversed PSC in her son. I know of one other member that has tried it (says she will go for another dose) and I am another member are researching how to get it. www.glutathioneexperts.com is the website of the malefactors and they have a 1-800 number. Ian (52) PSC 89 Please excuse my ignorance but we are new to all of this and I am trying hard to learn as much as I can in support of my son. I was hoping someone could help me understand if an elevated ammonia level can cause both the extreme fatigue and " fog " . Also I have read about the IV mentioned on this site. Can someone explain more to me about what it is and why it helps (how it works)? I am also trying to find out if anyone has ever heard of having a positive mitochondrial antibody test with a diagnosis of PSC (even though mitochondrial is most commonly related to PBC, right?)Thank you all so much for being here. You are a God send and I will continue to keep all of you in my prayers. Theresa -- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Dear Theresa; You are correct that anti-mitochondrial antibodies are usually associated with primary biliary cirrhosis (PBC). However, there are a few rare reports of patients with PBC then progressing to PSC, and even patients having both diseases. The most relevant recent paper on the rare co-occurrence of anti-mitochondrial antibodies and PSC, is this one: _________________________ Gut 58:152-153 (2009) Transient development of anti-mitochondrial antibodies accompanies autoimmune hepatitis–sclerosing cholangitis overlap. M Bhat1, M Guindi2, E J Heathcote1 and G M Hirschfield1 1 Department of Medicine, University of Toronto, Toronto, Canada 2 University Health Network and Pathology, University of Toronto, Toronto, Canada Correspondence to: Dr G M Hirschfield, Toronto Western Hospital, 399 Bathurst Street, 6B Fell Pavilion, Toronto, ON, Canada M5T 2S8; gideon.hirschfield@... The first 150 words of the full text of this article appear below. The biological basis of autoimmune liver diseases remains unclear, despite many suggestions.1–3 Not infrequently patients present in ways that demonstrate the artificial boundaries created by clinicians are simply that: classifications inadequately addressing underlying aetiopathogenesis.4 We describe a case that contributes further to our biological understanding. A 33-year-old man was initially diagnosed with primary sclerosing cholangitis (PSC) in 2003 at the time of an asymptomatic and anicteric cholestatic hepatitis: bilirubin 5 µmol/l (normal, <22), alanine aminotransferase (ALT) 221 U/l (normal, <40), aspartate transaminase (AST) 99 U/l (normal, <35), alkaline phosphatase (ALP) 487 U/l (normal, <110), and gamma-glutamyl transferase (GGT) 986 U/l (normal, <45). No other risk factors for liver disease were present either on history, examination or investigation, and pertinently the only immunological abnormality was high-titre anti-nuclear antibodies (1 in 640; homogeneous pattern); his anti-mitochondrial antibody (AMA-M2) titre was 1.17 IU/l (normal, <5). Cholangiography by magnetic resonance imaging was consistent .. . . _________________________ I have been trying to get the full text of this, but without any success yet. But, please note that Heathcote will be a keynote speaker at the 2009 PSC Partners Seeking a Cure conference, and so this would be a unique opportunity to ask her about this rare association between anti-mitochondrial antibodies (an antibody typically associated with PBC) and PSC/autoimmune hepatitis overlap syndrome. Best regards, Dave (father of (23); PSC 07/03; UC 08/03) > > I am also trying to find out if anyone has ever heard of having a positive mitochondrial antibody test with a diagnosis of PSC (even though mitochondrial is most commonly related to PBC, right?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Dear Theresa; You are correct that anti-mitochondrial antibodies are usually associated with primary biliary cirrhosis (PBC). However, there are a few rare reports of patients with PBC then progressing to PSC, and even patients having both diseases. The most relevant recent paper on the rare co-occurrence of anti-mitochondrial antibodies and PSC, is this one: _________________________ Gut 58:152-153 (2009) Transient development of anti-mitochondrial antibodies accompanies autoimmune hepatitis–sclerosing cholangitis overlap. M Bhat1, M Guindi2, E J Heathcote1 and G M Hirschfield1 1 Department of Medicine, University of Toronto, Toronto, Canada 2 University Health Network and Pathology, University of Toronto, Toronto, Canada Correspondence to: Dr G M Hirschfield, Toronto Western Hospital, 399 Bathurst Street, 6B Fell Pavilion, Toronto, ON, Canada M5T 2S8; gideon.hirschfield@... The first 150 words of the full text of this article appear below. The biological basis of autoimmune liver diseases remains unclear, despite many suggestions.1–3 Not infrequently patients present in ways that demonstrate the artificial boundaries created by clinicians are simply that: classifications inadequately addressing underlying aetiopathogenesis.4 We describe a case that contributes further to our biological understanding. A 33-year-old man was initially diagnosed with primary sclerosing cholangitis (PSC) in 2003 at the time of an asymptomatic and anicteric cholestatic hepatitis: bilirubin 5 µmol/l (normal, <22), alanine aminotransferase (ALT) 221 U/l (normal, <40), aspartate transaminase (AST) 99 U/l (normal, <35), alkaline phosphatase (ALP) 487 U/l (normal, <110), and gamma-glutamyl transferase (GGT) 986 U/l (normal, <45). No other risk factors for liver disease were present either on history, examination or investigation, and pertinently the only immunological abnormality was high-titre anti-nuclear antibodies (1 in 640; homogeneous pattern); his anti-mitochondrial antibody (AMA-M2) titre was 1.17 IU/l (normal, <5). Cholangiography by magnetic resonance imaging was consistent .. . . _________________________ I have been trying to get the full text of this, but without any success yet. But, please note that Heathcote will be a keynote speaker at the 2009 PSC Partners Seeking a Cure conference, and so this would be a unique opportunity to ask her about this rare association between anti-mitochondrial antibodies (an antibody typically associated with PBC) and PSC/autoimmune hepatitis overlap syndrome. Best regards, Dave (father of (23); PSC 07/03; UC 08/03) > > I am also trying to find out if anyone has ever heard of having a positive mitochondrial antibody test with a diagnosis of PSC (even though mitochondrial is most commonly related to PBC, right?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Dear Theresa; You are correct that anti-mitochondrial antibodies are usually associated with primary biliary cirrhosis (PBC). However, there are a few rare reports of patients with PBC then progressing to PSC, and even patients having both diseases. The most relevant recent paper on the rare co-occurrence of anti-mitochondrial antibodies and PSC, is this one: _________________________ Gut 58:152-153 (2009) Transient development of anti-mitochondrial antibodies accompanies autoimmune hepatitis–sclerosing cholangitis overlap. M Bhat1, M Guindi2, E J Heathcote1 and G M Hirschfield1 1 Department of Medicine, University of Toronto, Toronto, Canada 2 University Health Network and Pathology, University of Toronto, Toronto, Canada Correspondence to: Dr G M Hirschfield, Toronto Western Hospital, 399 Bathurst Street, 6B Fell Pavilion, Toronto, ON, Canada M5T 2S8; gideon.hirschfield@... The first 150 words of the full text of this article appear below. The biological basis of autoimmune liver diseases remains unclear, despite many suggestions.1–3 Not infrequently patients present in ways that demonstrate the artificial boundaries created by clinicians are simply that: classifications inadequately addressing underlying aetiopathogenesis.4 We describe a case that contributes further to our biological understanding. A 33-year-old man was initially diagnosed with primary sclerosing cholangitis (PSC) in 2003 at the time of an asymptomatic and anicteric cholestatic hepatitis: bilirubin 5 µmol/l (normal, <22), alanine aminotransferase (ALT) 221 U/l (normal, <40), aspartate transaminase (AST) 99 U/l (normal, <35), alkaline phosphatase (ALP) 487 U/l (normal, <110), and gamma-glutamyl transferase (GGT) 986 U/l (normal, <45). No other risk factors for liver disease were present either on history, examination or investigation, and pertinently the only immunological abnormality was high-titre anti-nuclear antibodies (1 in 640; homogeneous pattern); his anti-mitochondrial antibody (AMA-M2) titre was 1.17 IU/l (normal, <5). Cholangiography by magnetic resonance imaging was consistent .. . . _________________________ I have been trying to get the full text of this, but without any success yet. But, please note that Heathcote will be a keynote speaker at the 2009 PSC Partners Seeking a Cure conference, and so this would be a unique opportunity to ask her about this rare association between anti-mitochondrial antibodies (an antibody typically associated with PBC) and PSC/autoimmune hepatitis overlap syndrome. Best regards, Dave (father of (23); PSC 07/03; UC 08/03) > > I am also trying to find out if anyone has ever heard of having a positive mitochondrial antibody test with a diagnosis of PSC (even though mitochondrial is most commonly related to PBC, right?) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.