Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Kerry, you look great and your wife is very beautiful. You really are a very lucky man! Ron Re: New to the group >I did post some pic's, one of me at 715 and a couple as i was losing.enjoyKerry> Wow! How about posting some "After" pictures so we can see you!!> > Congratulations on such a wonderful accomplishment!> > in Cupertino> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Kerry, tell us how you've been training for the 5k and how you have gotten yourself in such good shape exercise-wise, please! Laurie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 > > Kerry, tell us how you've been training for the 5k and > how you have gotten yourself in such good shape > exercise-wise, please! > Laurie > Laurie It started walking the dog around the block, running and walking, I'm far from being ready, this time next year i will have run my first 5k, and i will not be LAST! Kerry > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 I am new to the group and I could use a little help. I am a 60 year old man who has been diagnosed with neurosarcoidosis by my Neuro doctor after a spinal tap. I have an appointment with a rhumotolgist(excuse my spelling) on Dec 3rd. What I would like to know is what do I ask the doctor? My main sympton that started my journey throught this is lightheadness which often comes on at work. A catscan from my regular doctor showed nothing . A MRI ordered by a ENT specialist showed a thickening around the brain which then sent me to a Neuro doctor who did the spinal tap and diagnosed the NS and wants me to see the next doctor. Not knowing anything about this is causing some apprenhension so any help in the next couple of days will be appreciate. I have seen at least one Ron here so you can refer to me as "little r". That comes from the verse He must increase and I must decrease. little r ron rawlings Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Thanks Tracie for the info. They have not said anything about the lungs. The neurologist did say that my hearing lost in one ear which happened about 18 years ago might have been caused by NS. As far as other pains I have just associated them with being 60. I will take a look at the websites you gave. Right now knowledge is going to be very important learning to deal with NS if the diagnosis is correct. I hope you get to feeling better soon. little r > > Little Ron, not to be confused with " Oyster man-- Ron " , > Welcome to family. I so wish none of us was here. > So- what to ask the doc-- > He'll probably want to put you on prednisone and taper you off over an extended period. It might help, but with NS-- it's important to ask about alternatives to steroids. > He may know about using Methotrexate, Plaquenil and other immunosupressive drugs that are steroid sparing. > It's important that you start with the least offensive and go up the chain of meds-- so they all want to use prednisone. > I hope he'll get together with the neurologist and make a team decision-- that is work together with your other docs. > Do you have any sign of sarc in the lungs -- or is it just in the brain. (Just- isn't really a good choice here..) How is your vision? Do you have systemic arthritis issues? > All of these can be significant that the sarcoidosis is in more than one body system. One of the newer studies is showng that for those of us that started on prednisone and were weaned off, that if the sarc comes back that it comes back with a more progressive attack than if we weren't on pred. I know I poste it in the Message ARCHIVES -- you can go to the group site, to messages and search by Prednisone and sarcoidosis. You can also search by " talking to the doctor " and should get some questions to ask. > There is a wealth of info there-- and you are welcome to print out any of the articles and take them with you. > FSR--Foundation for Sarcoidosis Research has a great brochure on Neurosarcoidosis-- you may be able to print it out also. That site is www.stopsarcoidosis.org. The other site I highly recommend is www.sarcoidosissharma.com. Dr. Sharma is at USC-LA and is the #2 world specialist on sarcoidosis. He is a great man-- and knows this disease better than anyone. I was part of a clinical study that he headed up on Remicade (Inflixamab and pulmonary and ocular sarcoidosis.)  > I'll try to find one of the articles on talking with the doctors-- and get more info to you. It may be tomorrow, as I've managed to come down with a nasty case of bronchitis and am wiped out tonight. Right now all of the moderators and owners are sick also-- so please be patient- we will get back to you. > I know this is urgent since your appt is Wed. > Again, ask questions, and we'll help where we can. > Sincerely, > Tracie > NS Co-owner/moderator > > >  > > > > ________________________________ > > To: Neurosarcoidosis > Sent: Monday, December 1, 2008 4:43:29 AM > Subject: New to the group > > > I am new to the group and I could use a little help. I am a 60 year old man who has been diagnosed with neurosarcoidosis by my Neuro doctor after a spinal tap. I have an appointment with a rhumotolgist ( excuse my spelling) on Dec 3rd. What I would like to know is what do I ask the doctor? > My main sympton that started my journey throught this is lightheadness which often comes on at work. A catscan from my regular doctor showed nothing . A MRI ordered by a ENT specialist showed a thickening around the brain which then sent me to a Neuro doctor who did the spinal tap and diagnosed the NS and wants me to see the next doctor. > Not knowing anything about this is causing some apprenhension so any help in the next couple of days will be appreciate. > I have seen at least one Ron here so you can refer to me as " little r " . That comes from the verse He must increase and I must decrease. >  > little r > ron rawlings > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Hello "Little R." I am Ron, I guess "Big R" now, as you put it. I read with interest your post and was drawn to do so and respond. First of all, what other symptoms do you have? What other diagnostic test have been performed? How long have you had these symptoms? What is the next course of action prescribed by your neurologist and rheumatologist? I would be willing to share with you my experience as well as my name. After all you are my elder. I will be 49 years of age this month. I was diagnosed with NS 13 years ago. Hang on, cause the ride is long and full of peaks and valleys my friend. It is truly a white knuckle experience. BUT, you will be in my prayers my Brother Ron. Warm regards, Ronnie BLife should be easier. So should your homepage. Try the NEW AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2009 Report Share Posted December 1, 2009 I am sorry to hear that your test are getting worse. My name is Tammy and I am 35yo from Omaha Ne and I was also just diagnosed with UIP this past week. I have read lots on the internet and I agree it is terrifying. This support group has been a live saver for me so far. Everyone is very nice and they answer all your questions without prejudice. I feel blessed that I was lead to this group of what I now consider friends. I will pray that you find the same comfort in the words of our friends here. God Bless and keep in touch. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Thank you Dyane and Tammy for the warm welcome. Yes I am from the Midwest, Indianapolis actually. After much reading I have decided to see a specialist next week at the University of Chicago. After finding this site yesterday I have been reading all the stories (well after midnight last night). It shall take me awhile to get used to all the abbreviations but I am sure it will all make sense as I continue to read on. I must say Dyane to hear you are working full time after being diagnosed 8 years is so very encouraging. Patti, 59, Indianapolis, IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Beth, Bruce, I remember when I was first diagnosed I wondered how far advanced I was. I noticed many others wonder the same so, they ask what stage there at? and we are told its not like cancer there are no stages etc, Maybe I am out in left field but It seems to me we should create "stages and it would help us all in how to live our lives and be prepared for the next stage. For instance stage 1. No O2 needed stage, 2. No O2 needed at rest but 2-5 liters with activity or exercise, stage, 3. O2 needed at rest and with activity ie. 24/7, stage 4. High liter Oxygen needed at rest 4+ and activity somewhat restricted due to high amounts of O2 needs. Then, as time goes on we could study progression from one stage to another, average time at stage one before moving to stage 2 etc. maybe we'd realize stage one and there are much longer etc. It could help us know a little better what to expect. I realize we are all different and progress different based on many variances, type of ILD etc. but we still could look at averages and know a little more of what to expect. I know four example stages are not what we would want and need to be tweeked but, What do you think? Subject: Re: new to the groupTo: Breathe-Support Date: Wednesday, December 2, 2009, 8:26 AM Patti, Welcome to Breathe Support!! It's lousy that you have reason to look for a group like this but I hope that you find it as helpful as I have over the last 3 and a half years. It sounds like you are doing all the right stuff. I'm so happy to hear you are going to the University of Chicago. They have a great reputation and I'm certain you will learn a ton regarding your own situation and how to approach the new realities. Take things one step at a time and please don't panic about what you read on the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same condition I was at that time. I've been stable for 3 and a half years. We have a member who is I think ten or twelve years out from diagnosis and is stable. So the moral of the story is, there is no expiration date tatooed on your fanny! Please continue to read and ask whatever questions you have. We're here to help! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: emma0850 <napa73 (AT) comcast (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Tue, December 1, 2009 10:35:47 PMSubject: new to the group Hello everyone.... .I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this group!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Beth. Bruce, Also we would be able to better get a grasp on Pred or no Pred ie Do people who took pred stay in a stage longer than a non Pred person? Bob From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 2, 2009, 8:26 AM Patti, Welcome to Breathe Support!! It's lousy that you have reason to look for a group like this but I hope that you find it as helpful as I have over the last 3 and a half years. It sounds like you are doing all the right stuff. I'm so happy to hear you are going to the University of Chicago. They have a great reputation and I'm certain you will learn a ton regarding your own situation and how to approach the new realities. Take things one step at a time and please don't panic about what you read on the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same condition I was at that time. I've been stable for 3 and a half years. We have a member who is I think ten or twelve years out from diagnosis and is stable. So the moral of the story is, there is no expiration date tatooed on your fanny! Please continue to read and ask whatever questions you have. We're here to help! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: emma0850 <napa73 (AT) comcast (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Tue, December 1, 2009 10:35:47 PMSubject: new to the group Hello everyone.... .I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this group!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Thank you Beth for the encouraging words........just knowing there are IPF patients out there that have remained stable for years is just the boost I need right now! Just wondering if any of you have had any problems with doctors not wanting to discuss your condition with your family.....my two grown daughters want to go with me and my husband to Chicago for my appt. I don't want to annoy the doctor but my girls are very concerned and I really want them there in the room too. Patti, 59, Indianapolis, IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Hi there, I was first diagnosed with interstitial pneumonitis in 1997 and IPF in 2004. Like you, I went to the net to get answers! Yike! One video showing the destruction of the lungs sent me through the roof. As you can see, it is 2009 and I'm still going pretty well with what they say now is " moderate " PF progress; and I'm stable. So, don't take any of that too seriously. It is good information if you don't take their time lines to heart. You are as unique to this disease as the rest of us and everyone has his/her own story and future. One day at a time! ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Thank you ann.....from now on I shall do what you say..... just read what info I can, but not focus on the time lines. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Stages still wouldn't tell you because the diseases are so unpredictable. Plus we'd need different for all the different forms. I think just live the best you can and take nothing for granted at all. Because you could spend forever in whatever you'd call stage 2 or you could go straight from stage 1 to the end. Biggest thing is avoiding complications so that you do make sure you go the complete path. Now, personally, I do sort of have my own mental concept and have used it in planning my future. First, I think of how I've been since diagnosis. I was immediately on oxygen so no pre-oxygen period for me. Low to moderate oxygen and able to be pretty functional. 0-5 lpm depending on what I'm doing. Next, I think of the period in which my oxygen needs are considerably higher and I'm requiring 6-10 lpm when active. At that point I picture myself far less able to do certain things but still able to do many with oxygen. Then, I think of the period of 10 lpm and more when I've lost most mobility. I try to surround myself at home with my favorite things. I bring in hospice at the right time as the oxygen requirements increase and their effectiveness decrease. But I have no idea how long any stage or if I'll see them all. I've just thought ahead of how I want to be at the various levels of the disease I've seen many reach. There are studies underway trying to find the keys to predicting progression but thats still research. Meanwhile we all need to live. You were an excellent example with your trip. I personally missed a lot of stages by not being diagnosed when I should have been. My FVC was 44% and my DLCO was 38% the first time either was ever measured and I was put on oxygen that same day. > > > From: Beth mbmurtha@... > Subject: Re: new to the group > To: Breathe-Support > Date: Wednesday, December 2, 2009, 8:26 AM > > >  > > > > > > > Patti, > Welcome to Breathe Support!! It's lousy that you have reason to look for a group like this but I hope that you find it as helpful as I have over the last 3 and a half years. > It sounds like you are doing all the right stuff. I'm so happy to hear you are going to the University of Chicago. They have a great reputation and I'm certain you will learn a ton regarding your own situation and how to approach the new realities. > Take things one step at a time and please don't panic about what you read on the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same condition I was at that time. I've been stable for 3 and a half years. We have a member who is I think ten or twelve years out from diagnosis and is stable. So the moral of the story is, there is no expiration date tatooed on your fanny! > Please continue to read and ask whatever questions you have. We're here to help! > >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > > > From: emma0850 napa73 (AT) comcast (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Tue, December 1, 2009 10:35:47 PM > Subject: new to the group > >  > > Hello everyone.... .I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this group!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Bob That would be extremely misleading because we have people with many different conditions and combination. Thats why research and trials are important. Only in those are they able to get a narrow group of people and compare with and without. The first clinical trial on prednisone with IPF is being run now. If you look at a group like this forum, you'd see many different forms of PF, many different causes. Some who don't know what form. Most who don't know what cause. Some who are probably misdiagnosed as to the form in particular and some even misdiagnosed at to having pulmonary fibrosis. The setting just is too conducive to misleading someone about their situation. UIP without known cause and with no connective tissue disease underlying it is very different that NSIP with Dermatomyositis. Even withing UIP the amount of inflammation if any creates a new situation. If you live too long with UIP then they quite often change the diagnosis to something else just based on that fact. If predinsone seems to help, they will often change the diagnosis. It's all such a hodgepodge of conditions and situations. Now in the clinical trials, hopefully they will learn more. > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: Re: new to the group > To: Breathe-Support@ yahoogroups. com > Date: Wednesday, December 2, 2009, 8:26 AM > > >  > > > > > Patti, > Welcome to Breathe Support!! It's lousy that you have reason to look for a group like this but I hope that you find it as helpful as I have over the last 3 and a half years. > It sounds like you are doing all the right stuff. I'm so happy to hear you are going to the University of Chicago. They have a great reputation and I'm certain you will learn a ton regarding your own situation and how to approach the new realities. > Take things one step at a time and please don't panic about what you read on the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same condition I was at that time. I've been stable for 3 and a half years. We have a member who is I think ten or twelve years out from diagnosis and is stable. So the moral of the story is, there is no expiration date tatooed on your fanny! > Please continue to read and ask whatever questions you have. We're here to help! > >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > > > From: emma0850 napa73 (AT) comcast (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Tue, December 1, 2009 10:35:47 PM > Subject: new to the group > >  > > Hello everyone.... .I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this group!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Tammy....a reminder to add your name to the bottom of your mail so we are sure who it is from...most of us have a 'signature' set up with name, dx(s), date of dx (diagnosis), age (if you choose) and where you live... These little one liners really help remember a person. I've been helped by our group as you have and chose to have (or not have) testing or whatever just by what I've learned here. I've never regretted my decisions. I think too that the number one thing in importance is to gather all the information you can before making a decision. Sounds like you are planning on a permanent move to the LA area. I'm sure you'll keep in touch. Happy Holidays to you. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: new to the group I am sorry to hear that your test are getting worse. My name is Tammy and I am 35yo from Omaha Ne and I was also just diagnosed with UIP this past week. I have read lots on the internet and I agree it is terrifying. This support group has been a live saver for me so far. Everyone is very nice and they answer all your questions without prejudice. I feel blessed that I was lead to this group of what I now consider friends. I will pray that you find the same comfort in the words of our friends here. God Bless and keep in touch. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Calypso,As I was writing my last message, I was thinking about how you should know already all of what I was saying! Glad that you did! My husband was the same regarding bleeding--the die-off so great and so prolonged that he didn't see much improvement without medication. He had some brief periods of very little or no bleeding over the last 19 months, but not much. The doctor has spent the last year trying to raise his iron levels, with me trying to get her to understand and test for iron sequestering. He couldn't take high dose iron and the mild supplement he was taking was no longer carried at our local shop. He too went off and on different medications. This last time he tried a prednisone taper it didn't do anything for his symptoms --which was mostly only bleeding and urgency b/c of the bleeding. He started s. boulardii at about the same time as he decided to try the asacol suppositories again. Within a day or so his bleeding stopped--which is why I mentioned them to you.I have not heard of regular LDN use in children with colitis much, BUT, I do know that more and more parents of Autistic Spectrum Disorders are trying it with good results for their children. Maybe you can research in that way to find some data. I do know that with the extra probiotics, the LDN, and the asacol (1 x daily) my husband feels really good and is happy with his lack of symptoms. He does still have some fatigue issues, but I think over time they will get better -- especially if I can get mine under control and go to bed at a decent hour! ; )It sounds like your son is responding to the medication now, which is good. Also, even though it is easier to take by opening the capsules, isn't that also basically doing away with the time release benefit of the capsule? I really fought my husband about the 6MP. It is a drug used to suppress the immune system so that cancer therapy works better, but it itself can cause leukemia in the long term, even after one has stopped taking it. I would definitely hold off on those kinds of drugs if you can. It seems like I am reading through this group that more and more doctors are recommending the 'last stage' type drugs right off the bat. Not sure why, but I don't think that is a good trend.Amelia.Husband UC 9 years, SCD 19 monthsLDN 3mgTo: BTVC-SCD Sent: Thu, February 4, 2010 8:14:36 PMSubject: Re: new to the group Amelia, Thanks for taking the time to respond to my post. Yes, he has been on the diet since we first suspected uc- the beginning of November. (Only three weeks after his first symptoms.) He was off the diet for several days when he was hospitalized in December. He is eating between a half cup to a whole cup of dripped yogurt(homemade, 24 hour fermented)each day. In addition to prednisolone, he is currently he is taking Apriso, a newer anti-inflamatory, which they swiched him to after he had an allergic reation to sulfasalazine. (They chose Apriso because we can open the capsles to make them easier to swallow.) His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children? I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. I'm totally committed to the diet. My husband and his bother were both diagnosed with ulcerative colitis within months of each other. My husband stuck with the diet, while his bother only tried it for a month, but couldn't handle the the die off symptoms. My husband is currently off all medications, while his brother needed a total colectomy. Maybe its not accurate to compare the two, but in my mind the diet is responsible for keeping my husband's body intact and whole. Thanks for listening, Calypso > > Calypso, > > Is your son on the diet now? > > Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse. > > The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. > > Has the doctor discussed Asacol (orally or suppository) ? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. > > > All of these drugs can be of good use under the right circumstances. > Sometimes the gut is so inflammed that almost all food will be > rejected -- even good healing food--so these medications are good at > 'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address. > > Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosen altrexone. org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. > > Amelia. > Husband UC 9 years, SCD 19 months > LDN 3mg > > > > > ____________ _________ _________ __ > From: Calypso Harmon <calypsoharmon@ ...> > To: BTVC-SCD@yahoogroup s.com > Sent: Thu, February 4, 2010 4:15:41 AM > Subject: new to the group > > > Hi, > I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. > > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > > Thanks, > Calypso > Quote Link to comment Share on other sites More sharing options...
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