Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 Hi, Im a newbie to this group.Wondering if anyone has any experience on the D'Adamo (blood type) Diet or with herbs other than Milk Thistle. I would like to share your experience since I have had some myself, which was quite positive, but very expensive. Saul UC - 94 PSC - 95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 Welcome, Saul. Patti (mailto:gemini_0306@...) is our alternative expert - I'm sure you'll hear from her shortly. Arne51 - UC 9/77 - PSC 4/00Alive and (mostly) well in Minnesota -----Original Message-----From: CholangitisSuprt@... Hi,Im a newbie to this group.Wondering if anyone has any experience on the D'Adamo (blood type) Diet or with herbs other than Milk Thistle. I would like to share your experience since I have had some myself, which was quite positive, but very expensive.SaulUC - 94 PSC - 95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 Patti, First of all I am on the blood type diet www.dadamo.com for type 0 Secretor negative. I take the following herbs: 1) Milk Thistle, which you already know about 2) L-Arginine - which increases nitric oxide. 3) L-Glutamine. 4) Bromelain to eliminate scarring 5)Quercetin as an antihistamine delaying inflamation 6)Moducare to assist the immune system not to become 'hyperactive' 7)non DGL Licorice Root -its great. At one point I stopped all herbs, and itching started uncontrollably, As soon as I took the licorice root, itching stopped immediatly). 8)Pottasium with Licorice Root (to stop water loss, which can cause edema hypertension etc.) 9)Folic Acid. I also take Urso 1000mg a day as well as Allegra to stop hystamine action. With the diet, herbs and meds something seems to be working! All the best Saul UC - 94 PSC - 95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 Patti, By the way, I am also seen at the D'Adamo Clinic, in Connecticut, which is run by Dr. D'adamo. (I know that D'Adamo's father Dr. D'Adamo runs a clinic in Canada somewhere in Ontario). and his staff treat a nice number of people with PSC, are very professional, VERY EXPENSIVE, though very effective! They know their herbs and supplements, though they maintain the key to fighting PSC is their diet. I don't know what works, but between the Diet The herbs, and the meds something definitely works One thing I wonder is - if most people who are diagnosed with PSC began taking Asacol or Pentasa (or a differnt type of azulfadine) before being diagnosed with PSC? Saul UC - 94 PSC - 95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 and , I really appreciate your imput, as crazy as it may sound, I wanted to see if there was any relation between those drugs and PSC. I read that there is a side effect of itching and elevated liver enzymes associated with Asacol, but now with your information, I guess the elevated liver enzymes are not connected to PSC. Thank you very much! Saul UC - 94 PSC - 95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 > One thing I wonder is - if most people who are diagnosed with PSC > began taking Asacol or Pentasa (or a differnt type of azulfadine) > before being diagnosed with PSC? I didn't start Pentasa (or any related meds) until something like 8 years after my PSC diagnosis... athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 > One thing I wonder is - if most people who are diagnosed with PSC> began taking Asacol or Pentasa (or a differnt type of azulfadine)> before being diagnosed with PSC? Same with me, the PSC came first and then UC. I started taking Urso before Pentasa. PSC & UC 2002 México Re: alternative stuff > One thing I wonder is - if most people who are diagnosed with PSC> began taking Asacol or Pentasa (or a differnt type of azulfadine)> before being diagnosed with PSC?I didn't start Pentasa (or any related meds) until something like 8years after my PSC diagnosis...athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 I wanted to see if > there was any relation between those drugs and PSC Saul, Once the disease progression starts there is nothing proven to slow it down. Biliary scarring cannot be reversed. INFLAMMATION is what causes the scarring in the intrahepatic and extrahepatic bile ducts. I do know that Ursodeoxycholic acid and Prednisone lower Alkaline Phosphatase in those in early stage PSC. The only other possibility is the total destruction of the immune system with CYCLOPHOSPHAMIDE. It seems to work for those who have Lupus, Crohns and other auto-immune disorders, Some go into complete remission. There are so few of us that have this disease, so I would tend to think is is genetic. I know we have a father and son in this group who both have PSC. In my case I was diagnosed with PSC first then AFTER I had my first biliary stent put in I lost all of my hearing in my left ear overnight then a month later I developed full blown Crohns disease. (Some people have an immune response to caths and stents) So the trigger could be anything. A virus, stress, exposure to chemicals. Someday perhaps we will know the answer. Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2003 Report Share Posted March 10, 2003 Andi, I know that there is a lot of opposition to alternative medicine, and dietting. I think the reason that there is so much opposition if fairly understandable. I think somewhere like 75-80 precent of practitioners are quacks. Many times I myself have gone to people who called themselves practitioners, only to find worsening of symptoms. However, when my alk phos reached was over one thousand, I said that I would give the D'Adamo Clinic a shot. After I saw them my Alk Phos went down to two hundred. Dr. D'adamo and his colleagues have seen many (relatively) people with PSC and they had very positive results. I am not advertising for them, but I think their diet and philosophy really works. It especially worked for me. When my doctor told me that I would probably need to go for a liver transplant, because of the uncontrolled itching, and I had such a dramatic remark, I really beleive that 'the proof is in the pudding'. By the way My MD who is one of the leading specialists in NYC (who most of us probably heard of) was convinced of my keeping to my regimen. He said that in the future there probably will be a lot of research in why the alternative supplememnts work. to be continued shortly - got to run to a meeting. Saul UC - 94 PSC - 95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2003 Report Share Posted March 10, 2003 Saul, first off in response to Andi's post...nothing 'conventional' has been found to slow down or stop this disease.... Thank you for your list of meds...I did forget to add the licorice, Mike takes the same kind as you...at first it was to simply settle his stomach because the Urso and other meds made him a bit nauseated, that settled it all right down...now he takes it simply for the benefits proven...(mostly by the Japanese who use it extensively for liver disorders)... Moducare speaks for itself...settling the overactive immune system... I would use caution with glutamine if you are cirrhotic...anybody with a disorder that could possibly increase ammonia in the bloodstream should exercise caution... Amino acids are fascinating and Mike gets alot through a whey powder protein... Glutathione levels are important to the liver...SAMe takes care of that. I am interested in the few things you've mentioned and will be looking into them... I get disheartened when people make negative comments regarding alternatives (as I have expressed here before)....because conventional medicine has not found the answer does NOT mean the answer is not out there...... Mike and I have chosen not to sit back and accept the doom and gloom but to try everything we can to slow down the disease...the end result may not be different but the longer he stays healthy and the longer he stays off the transplant table, technology will improve and so will his chances...I'd say after 15 years of having this disease he's doing okay and I attribute that to our pro-active attitude with this demon. Patti >From: CholangitisSuprt@... >Reply-To: >To: >Subject: Re: alternative stuff >Date: Sun, 9 Mar 2003 16:45:18 EST > >Patti, > >First of all I am on the blood type diet <A >HREF= " www.dadamo.com " >www.dadamo.com</A> for type 0 Secretor >negative. I take the following herbs: > >1) Milk Thistle, which you already know about >2) L-Arginine - which increases nitric oxide. >3) L-Glutamine. >4) Bromelain to eliminate scarring >5)Quercetin as an antihistamine delaying inflamation >6)Moducare to assist the immune system not to become 'hyperactive' >7)non DGL Licorice Root -its great. At one point I stopped all herbs, and >itching started uncontrollably, As soon as I took the licorice root, >itching >stopped immediatly). >8)Pottasium with Licorice Root (to stop water loss, which can cause edema > hypertension etc.) >9)Folic Acid. >I also take Urso 1000mg a day >as well as Allegra to stop hystamine action. > >With the diet, herbs and meds something seems to be working! > >All the best >Saul >UC - 94 PSC - 95 _________________________________________________________________ The new MSN 8: smart spam protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2003 Report Share Posted March 10, 2003 Saul, Mike was a heavy drinker years ago before I knew him....he started feeling weak, got jaundice and had hepatosplenomegaly and was hospitalized with elevated liver functions...after weeks of tests and biopsys the discharge summary said 'alcoholic hepatitis' possible 'epstein barr'....eventually all syptoms resolved themselves (he quit drinking cold turkey)...although his lever functions never really returned to normal..they told him he had a 'fatty liver'...years passed and when he met me (coincidence I hope), he started with bowel problems...after months of being told his nerves were bad and put on several anti-depressants, finally a Dr. did a colonoscopy and he was diagnosed with pan-colitis..and put on asacol...I think one thing that pissed me off is that liver disorders were never mentioned...if you are diagnosed with diabetes, you know what may happen down the road so therefore you look after certain things in hopes you can ward it off...well, I believe if you are diagnosed with an inflammatory bowel disorder you should be told about PSC and told to LOOK AFTER YOUR LIVER.....anyway, about 8 years after being put on asacol, those old symptoms came back, some weight loss, fatigue, elevated liver functions, after about two years, he got his diagnosis... and here we are... Patti >From: CholangitisSuprt@... >Reply-To: >To: >Subject: Re: alternative stuff >Date: Sun, 9 Mar 2003 20:03:20 EST > >Patti, > >By the way, I am also seen at the D'Adamo Clinic, in Connecticut, which is >run by Dr. D'adamo. (I know that D'Adamo's father Dr. D'Adamo >runs a clinic in Canada somewhere in Ontario). and his staff treat a >nice number of people with PSC, are very professional, VERY EXPENSIVE, >though >very effective! They know their herbs and supplements, though they maintain >the key to fighting PSC is their diet. I don't know what works, but between >the Diet The herbs, and the meds something definitely works > >One thing I wonder is - if most people who are diagnosed with PSC began >taking Asacol or Pentasa (or a differnt type of azulfadine) before being >diagnosed with PSC? > >Saul >UC - 94 PSC - 95 _________________________________________________________________ STOP MORE SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2003 Report Share Posted March 10, 2003 Saul, I read the same things as you and wondered myself...one internist did give Mike blood reqs to watch his liver functions after being put on asacol.... Patti >From: CholangitisSuprt@... >Reply-To: >To: >Subject: Re: alternative stuff >Date: Sun, 9 Mar 2003 22:22:39 EST > > and , > >I really appreciate your imput, as crazy as it may sound, I wanted to see >if >there was any relation between those drugs and PSC. I read that there is a >side effect of itching and elevated liver enzymes associated with Asacol, >but >now with your information, I guess the elevated liver enzymes are not >connected to PSC. > >Thank you very much! > >Saul > >UC - 94 PSC - 95 _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
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