Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 In a message dated 3/26/02 5:17:24 PM Pacific Standard Time, writes: Harper, When the servers were being changed a couple of weeks ago, I was wiped out of the system. When I tried to sign up for this group, it was not listed. I had to go through Matt's AIH site to sign up. Now, this group is listed again on . The other posts that you are receiving are from the other group that I first communicated with you. When the servers were changed, my membership in that group was erased too. It sounds like they are having a lot of trouble getting things back to normal at . How quickly we've come to take this wonderful resource for granted! My situation would have been very different if I hadn't had it available soon after diagnosis. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Harper, Saturday, Sunday, and Monday, my computer apparently received a virus that my Norton did not contain. Therefore, I spent the days trying to backup my files....(I keep telling myself that it is importnat to back up stuff). Unfortunately, I lost all of my favorites...now I have to wait for people to let me know where to go! Oh well...could be worse...at least I saved my email lists! Anyway, I was frantic to not be able to have the support from this group! I was glad when I got back up and going again~ debby Re: [ ] The Group In a message dated 3/26/02 5:17:24 PM Pacific Standard Time, writes: Harper, When the servers were being changed a couple of weeks ago, I was wiped out of the system. When I tried to sign up for this group, it was not listed. I had to go through Matt's AIH site to sign up. Now, this group is listed again on . The other posts that you are receiving are from the other group that I first communicated with you. When the servers were changed, my membership in that group was erased too. It sounds like they are having a lot of trouble getting things back to normal at . How quickly we've come to take this wonderful resource for granted! My situation would have been very different if I hadn't had it available soon after diagnosis. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 Tracey ..I greatly regret what I feel is a wrong assessment of me...it is too bad because I really neve had a bad impression of you. Take care of yourself. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 I understand completely Sharon...there is no greater champion of the medicine profession and medical doctors than I. They saved my life which is why I repeated a saying that I didn't manufacture..it has been said many times before by people better than I It was not directed toward you personally so why take it personally. It was in refeence to the ongoing discussion between Bruce and me. I said precisely because I trust my doctors and what they are doing and the fact that Bruce keeps saying every one has their own opinion....Bit you see he has offered no facts to support his arguments so that is not really a sound opinin. The medical profession on the other hand is based on research and trials and reults and facts. where does this differ fom any thoughts you may have and cause you to jump on me....I don't recall ever being arrogant to you perhaps it is a perception you have but it is not true.. I'm am not the only one here that will post in when they see something that someone writes they feel may be wrong. I'm sorry you can't seem to find any redeeming qualities in me...but what others may thin of me is none of my business....I do think kindly of you however and pray for your health and well being just as I do for everyone elses even Bruce. . love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 Dear Jerry, What you fail to understand is that by challenging Bruce who truly believes that his treatment prescribed by his doctor is helping him, you are demeaning all of us who have faith in our doctors. I personally have never tried his herbal remedies, but you will remember that my doctor whose expertise I trust had me on Actigall for AIH. I don't have details of his research to give you the data, but I have heard from other group members whose hepatologists are also prominent at various research universities and who are using Actigall alone for AIH. Over the 6 months that I was on Actigall, you continually challenged me to prove to you that Actigall was useful with AIH. You suggested that I had PBC, which I don't. Unfortunately in my case, it did not stop my rising LFTs, and one month ago I had to start immunosuppressant therapy, but I'm glad my hepatologist tried to combat my disease with Actigall, a much safer treatment in mild AIH cases. You have continued to berate Bruce and Tracey who have both had wonderful success using Actigall only. I'm glad you have faith in your doctors who saved your life. Why do you try to impede others' faith in their doctors? You suggested I am being arrogant, but actually I am trying very hard to get you to look at the harm you are doing to new members and those whose prescribed treatment differs from what you recommend. Many of those members have left the group and my heart aches for them because I know they came to the group seeking support and wanting to share something about themselves. I do believe that perhaps you are not aware of how you are coming across. Please try to be more supportive of other members, especially those who are expressing a treatment with which you are unfamiliar or disagree. Thank you. Sharon G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Jerry wrote: I not telling people to use imuran and prednisone because i believe it the right way but because medical science thinks it is the right way. I am one of several people on this board (and probably a lot more we will never know) who has been told by medical science as represented by medical experts in specialist clinics that prednisone and imuran are NOT the right way to treat my variant of AIH. Let's not presume what is right for most is right for all... Sophie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 > > I am one of several people on this board (and probably a lot more we > will never know) who has been told by medical science as represented > by medical experts in specialist clinics that prednisone and imuran > are NOT the right way to treat my variant of AIH. Let's not presume > what is right for most is right for all... > > Sophie Well said, Sophie. Sharon G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Sigh...... Jerry wrote: I not telling people to use imuran and prednisone because i believe it the right way but because medical science thinks it is the right way. I am one of several people on this board (and probably a lot more we will never know) who has been told by medical science as represented by medical experts in specialist clinics that prednisone and imuran are NOT the right way to treat my variant of AIH. Let's not presume what is right for most is right for all... Sophie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Tracey, I wish you would not leave. All that do will be missed. Please rethink your decision. If you do go you will be missed. I wish you good health and a happy life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Don't worry, I think it got through to most you didn't mean everyone all of the time with AIH, just that it is a stnadard protocol used most often with success. I am pretty sure most understood. Love, Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Carole...some people just have to keep things going by nit-picking...I'm glad you understand what I am saying...actually so does Sophie. why she has to encourage close minded people like Sharon, I don't know.....that is exactly why I sent the one word message .. I'm tired of arguing I've made my point too many times' if people don't get it it is because they don't want to........sigh.... love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 When I come across info I think might stand a good chance of being applicable to the group, I will forward the info. Other than that, I don't have much to say. Some of you may recall that in less than four months my extremeties were straightening, I had less swelling therefore less pain and as a result better movement. Plus my skin was not so painful. To me, the Minocycline was miraculous. I tell people about it whenever there is an opportunity. People prefer to follow their medical deity(md) :-(( My head felt like it was being squeezed sometime after I began the Minocycline. The next visit to the rheumatologist, my BP was 150/100 rather than in the usual range of 110/70-124/80. She told me I needed to stop. At the time, I did not know that my optic nerves should have been checked to see if this was a side effect or actually benign intracranial hypertension (BIH). I lost it all and just continue to get worse. Dr. Chiu recommended I not take tetracyclines at all. I tried erythromycin for a year and that did nothing for me. Four years ago, the primary physician left and the new fellow did not want to have anything to do with the RA. He referred me to yet another rheumatologist. Last visit he started talking about Enbrel. I said no, no way. He turned and looked at me and said, then why are you coming here. I explained the reason. During the visit I asked for pain medication and he told me I would need to see my primary for that. Well, last week I had an appointment (four years later LOL) with the same primary physician. I went over the whole scenario with him and asked him to please refer me to a physician who could write an Rx for pred. and a pain med. He said he could do that, and he did. One of the nurses from home health has psoriatic arthritis. Last year, she was unable to walk for six months. Se went on Enbrel. She had a patch of psoriasis on her left ear which she rubbed, developed an infection and had to be on two potent antibiotics. Then she caught a cold and was treated immediately with a strong antibiotic. She worries about lymphoma. The ulcer I have had on my foot since Dec. 2003 had cellulitis which was difficult to heal. I went through several antibiotics. If I had been on Enbrel, I'd be dead! The wound is finally healing, down to 1cm x 3.8cm. I think I increased the Minocycline dosage too quickly but I would have needed a knowledgeable and supportive physician to try again. Pray the ry ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.3/362 - Release Date: 6/12/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Well. Thanks . That is the way it should be. I like all you guys. the group Hi all. I wish to say, to anybody who is new to this group, please forgive us for this " whirlwind " of messages the last few days. That is NOT typical of this group. But we are just " people " . And yes we can get " bombarded " " emotional " " get angry " whatnot. This is a caring group. But through all of this??? I had a thought? Did anyone of the so called people who were " pushing " their type of therapy???? Did they ever say THEY had a spinal disorder, simple back ache, or did they just have a " cure " for it?? hmmmm... And yes, to the person who was dealing with elderly parents as well (sorry, read your post, but with so many posts, can't find your name. Yes I do try and read them all). It adds to the stress and the pain. I have a Mom who last Oct. broke her hip, this April had a heart valve replacement much like Barbara Bush had. You do not know (or maybe you do) how hard it is to get back and forth to appolintments, not only with our own problems, but taking care of elderly parents too!!!! I do not do well driving after 3-4 in the afternoon. AAAKKK. Live in the sticks. And I never know when I will be able to sleep at night, so never know when I will have a good day when I can function like a " normal " person. in NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 We like you too!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! --- Babbitt ________________________________ From: cathy mccarthy <bbhorsetack@...> spinal problems Sent: Thu, October 29, 2009 11:01:44 PM Subject: Re: the group Well. Thanks . That is the way it should be. I like all you guys. the group Hi all. I wish to say, to anybody who is new to this group, please forgive us for this " whirlwind " of messages the last few days. That is NOT typical of this group. But we are just " people " . And yes we can get " bombarded " " emotional " " get angry " whatnot. This is a caring group. But through all of this??? I had a thought? Did anyone of the so called people who were " pushing " their type of therapy???? Did they ever say THEY had a spinal disorder, simple back ache, or did they just have a " cure " for it?? hmmmm... And yes, to the person who was dealing with elderly parents as well (sorry, read your post, but with so many posts, can't find your name. Yes I do try and read them all). It adds to the stress and the pain. I have a Mom who last Oct. broke her hip, this April had a heart valve replacement much like Barbara Bush had. You do not know (or maybe you do) how hard it is to get back and forth to appolintments, not only with our own problems, but taking care of elderly parents too!!!! I do not do well driving after 3-4 in the afternoon. AAAKKK. Live in the sticks. And I never know when I will be able to sleep at night, so never know when I will have a good day when I can function like a " normal " person. in NH Quote Link to comment Share on other sites More sharing options...
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