Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 I personally think that diet would be the best way of dealing with some of the problems associated with the effects of PSC at least at this point. So many times the supplements or medications cause so many other problems and even more damage to the liver. It's all so confusing. Phil stopped taking Tylenol for his back, neck & headache problem and is now taking darvon. Is that any better? Course the diet thing is soooo hard to stick to. It's so much easier to pop a pill. I've been trying to treat UBS an arthritus and allergies with diet for years and it does work but sticking to the healthy diet is so hard I keep falling off. Peg wrote: original article:/group//?start=3001 > I know of someone who had no liver disease until she took methotrexate for her > arthritis. I also have an older friend who takes it and she is screened every > three months for liver damage. Can someone explain how you can use a drug that > can damage the liver to treat the liver? > Penny > > mltill wrote: > > > Jim, > > There is a doc at MIT in Boston who is researching the cause of PSC...He is > > trying to determine if there is a bacterial link to the cause. Also, there > > is a methotrexate trial at New England Med Center (Contact Dr. Young-Mee > > Lee) in Boston, and I know that Mayo also is trying new drugs as a means of > > either curing or slowing the PSC process. When I was diagnosed 14 years > > ago, the procedures they are now using to keep me alive had not been > > perfected. Now they're saving my life. The good news about liver disease > > (relatively speaking) is that it slowly progresses, and who knows what will > > be available 14 years from now? Don't give up hope... > > > > > > jhines@... wrote: > > > > > Greetings, again, all: > > > > > > You may remember that in early May, I posed a question about PSC in > > > children. The reason I asked was that our son had been diagnosed with > > > PSC, even though preliminarily. > > > > > > Well, having just returned from the University of Cincinnati, and > > > knowing more about ERCP than I admit I'd like to know, I can report > > > that our 21/2-year-old does indeed have PSC, even though it's not very > > > pronounced. > > > > > > Some of you had asked if I'd shareany possible genetic links or other > > > probable causes. Sure. The best answer we've gotten from two experts is > > > a virus. ALthough currently unknown, the virus probably stikes the > > > liver and causes a natural, auto-immune reaction, which causes PSC. > > > > > > You probably already knew that, but I thought I would answer. Sadly, as > > > I know you know, there is no research occuring for PSC right now (and > > > none on the horizon for toddlers with this monster). That bothers me. > > > Are there campaigns underway to contact legislative staffers? Research > > > hospitals? If so, please let me know. > > > > > > I can always be reached at jhines@... (redirects to my > > > corporate account) and I check it nightly. If you need/want faster > > > communications, please e-mail me and I'll give you my private e-mail > > > account in my office. > > > > > > Thanks, and God bless. > > > > > > Jim > > > (Tristan's Father) > > > > > > ----------------------------------------------------------------- ------- > > > Scream your mind > > > Be as loud as you want at FortuneCity.com > > > http://clickhere./click/366 > > > > > > eGroups.com home: /group/ > > > - Simplifying group communications > > > > ------------------------------------------------------------------- ----- > > Scream your mind > > Be as loud as you want at FortuneCity.com > > http://clickhere./click/366 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Peg-- I've never been told any special diet for PSC - just the typical healthy meals. It can't be that easy--dealing with the effects of PSC by diet. I'm sure I would have been told by now by either my Mayo drs or the tx drs in Omaha. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Hi Penny- Yes, I think methotrexate for treatment of PSC is very controversial. Dr. Kaplan et al. at NE Medical Center has published a study in which he demonstrated positive results, but other specialists have said that they had not been able to replicate those results in other studies. Have discussed with my GI Dr., and hepatologists from Beth Israel in Boston and Mayo Clinic, who do not agree with this treatment. Perhaps, however, at a certain stage of PSC or in certain individual conditions, it helps more than it damages. ? Tufts- New England Medical Center is considered a very good teaching hospital and Dr. Kaplan's group has one of the largest number of PSC patients in the country. H. methotrexate I know of someone who had no liver disease until she took methotrexate for her arthritis. I also have an older friend who takes it and she is screened every three months for liver damage. Can someone explain how you can use a drug that can damage the liver to treat the liver? Penny mltill wrote: > Jim, > There is a doc at MIT in Boston who is researching the cause of PSC...He is > trying to determine if there is a bacterial link to the cause. Also, there > is a methotrexate trial at New England Med Center (Contact Dr. Young-Mee > Lee) in Boston, and I know that Mayo also is trying new drugs as a means of > either curing or slowing the PSC process. When I was diagnosed 14 years > ago, the procedures they are now using to keep me alive had not been > perfected. Now they're saving my life. The good news about liver disease > (relatively speaking) is that it slowly progresses, and who knows what will > be available 14 years from now? Don't give up hope... > > > jhines@... wrote: > > > Greetings, again, all: > > > > You may remember that in early May, I posed a question about PSC in > > children. The reason I asked was that our son had been diagnosed with > > PSC, even though preliminarily. > > > > Well, having just returned from the University of Cincinnati, and > > knowing more about ERCP than I admit I'd like to know, I can report > > that our 21/2-year-old does indeed have PSC, even though it's not very > > pronounced. > > > > Some of you had asked if I'd shareany possible genetic links or other > > probable causes. Sure. The best answer we've gotten from two experts is > > a virus. ALthough currently unknown, the virus probably stikes the > > liver and causes a natural, auto-immune reaction, which causes PSC. > > > > You probably already knew that, but I thought I would answer. Sadly, as > > I know you know, there is no research occuring for PSC right now (and > > none on the horizon for toddlers with this monster). That bothers me. > > Are there campaigns underway to contact legislative staffers? Research > > hospitals? If so, please let me know. > > > > I can always be reached at jhines@... (redirects to my > > corporate account) and I check it nightly. If you need/want faster > > communications, please e-mail me and I'll give you my private e-mail > > account in my office. > > > > Thanks, and God bless. > > > > Jim > > (Tristan's Father) > > > > ------------------------------------------------------------------------ > > Scream your mind > > Be as loud as you want at FortuneCity.com > > http://clickhere./click/366 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > Scream your mind > Be as loud as you want at FortuneCity.com > http://clickhere./click/366 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ Just Tell Us What You Want... Respond.com - Shopping the World for You! http://clickhere./click/390 eGroups.com home: /group/ - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 I had called Dr. Kaplan's office to get information to be in the study. When I was sent the papers it said that you could not get pregnant (or if you are a man, get anyone pregnant), for as long as you are in the study. It also said that one stage of the study lasts 4 years. I may plan on having children someday, so this wouldn't be good for me. Also, I wouldn't like driving to boston twice a year. Love ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Peg, I was just Laurie or am just like Laurie. My doc at Duke said that food had NOTHING whatsoever to do with my liver disease. Hugs, Biddy Re: methotrexate >Peg-- >I've never been told any special diet for PSC - just the typical healthy >meals. >It can't be that easy--dealing with the effects of PSC by diet. I'm sure I >would have been told by now by either my Mayo drs or the tx drs in Omaha. > >Laurie > >------------------------------------------------------------------------ >Don't let the next virus knock you out! Special Offer to eGroups members >Install @Backup by June 30th and win a $100 Gift Certificate from Amazon >.com and @Backup free for a year! http://clickhere./click/363 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 I didn't mean PSC can be treated by diet. But eating the right things and a lot of things better than others can help some of the problems that go along with it such as the colitis, I'm sorry after I wrote that I was afraid you guys would think that I was saying PSC can be controlled by diet and it can't but some of the medicines are very scarry, of course you need to do what the doctors say but sometimes I think doctors are brainwashed by the pharmaceutical companies. I think most of the doctors we are dealing with know what they are doing but they'll even admit this is a very tricky disease. Peg Oceandrmer@... wrote: > Peg-- > I've never been told any special diet for PSC - just the typical healthy > meals. > It can't be that easy--dealing with the effects of PSC by diet. I'm sure I > would have been told by now by either my Mayo drs or the tx drs in Omaha. > > Laurie > > ------------------------------------------------------------------------ > Don't let the next virus knock you out! Special Offer to eGroups members > Install @Backup by June 30th and win a $100 Gift Certificate from Amazon > .com and @Backup free for a year! http://clickhere./click/363 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 True, , Quality of life comes first...and I understand why you'd decline the meth study. I am too far gone for it. It's mainly for those in early stages. Who knows if it will be any good, anyway. I declined (in '85) the option of going into Mayo's interferon study, and now am I ever glad I did (too many side effects and it didn't amount to anything anyway)....How are you feeling these days? WYBEAR21@... wrote: > I had called Dr. Kaplan's office to get information to be in the study. When > I was sent the papers it said that you could not get pregnant (or if you are > a man, get anyone pregnant), for as long as you are in the study. It also > said that one stage of the study lasts 4 years. I may plan on having > children someday, so this wouldn't be good for me. Also, I wouldn't like > driving to boston twice a year. > Love > > > ------------------------------------------------------------------------ > GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. > Save on vitamins & supplements. Use coupon code: EGROUPS99 > at checkout. http://clickhere./click/463 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications 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.