Guest guest Report post Posted April 11, 2003 The instructions on mine say to add with water but I almost always add milk to it. I have never been able to do skim milk so it is usually 2% milk. I understand about the Carnation Instant Breakfast. My doctor recommended the same thing. Lori Owen - Denton, Texas CHF 4/14/01 479 lbs. SRVG 7/16/01 401 lbs. Current Weight 335 Dr. Ritter/Dr. Bryce On Fri, 11 Apr 2003 14:38:01 -0000 " szzln23 " writes: > Lori, > Carnation Instant Breakfast is what my dr initially said to drink. > I > wasn't crazy about a lot of the other protein drinks. I only do the > > instant breakfast in the morning then I also drink Herbalife fruit > protein drinks during the day. Those I do like. But have gotten > away from them for a bit. With the other protein drinks do you use > > water or milk? > mary > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2003 The instructions on mine say to add with water but I almost always add milk to it. I have never been able to do skim milk so it is usually 2% milk. I understand about the Carnation Instant Breakfast. My doctor recommended the same thing. Lori Owen - Denton, Texas CHF 4/14/01 479 lbs. SRVG 7/16/01 401 lbs. Current Weight 335 Dr. Ritter/Dr. Bryce On Fri, 11 Apr 2003 14:38:01 -0000 " szzln23 " writes: > Lori, > Carnation Instant Breakfast is what my dr initially said to drink. > I > wasn't crazy about a lot of the other protein drinks. I only do the > > instant breakfast in the morning then I also drink Herbalife fruit > protein drinks during the day. Those I do like. But have gotten > away from them for a bit. With the other protein drinks do you use > > water or milk? > mary > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2003 Well, actually, not to make you feel stupid,. But when the carb monster gets that bad, usually we're waking him up every day. I fear that the CIB + milk will only fuel him further, since that's yet more sugar. 12g in the moo + 7g in the NSA or 12g in the regular CIB. That's 24g of useless calories, so it makes Mr. Carb happy as can be. And has done nothing for you but pad your hip bones, know what I mean? You might wanna dig around for real protein that delivers a gob of protein, no sugar and make sup in water. Go see the protein perverts for about 10,000 ideas. Then you'll be ready for the POC, if not this time then next time. http://groups.yahoo.com/group/OSSG-Protein/ Hey, if we were perfect, we'd not be here together, right? Thanks, Vitalady, Inc. T www.vitalady.com If you are interested in PayPal, please click here: https://www.paypal.com/affil/pal=orders%40vitalady.com Help > , Ok, when you ask me questions like that it really makes me > realize how far off track I've gotten. I do get in all my water, but > I haven't had a protein drink in over 2 weeks and have resorted to > cookies and candy as my staple. How stupid is that? And then to > whine about it? Ok, so today is a better day and I'm tryin to get > back on track. I do drink milk but only fat free and with a NSA > Carnation Instant Breakfast in the morning.....or should I say that's > what I'm going back to. I think I'm going to jump on the bandwagon > and go with the group detoxing with protein and water for a few > days. I think if I go back to basics and get the sugar out of my > system maybe that would help. I appreciate all the help I can get > though. > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2003 Well, actually, not to make you feel stupid,. But when the carb monster gets that bad, usually we're waking him up every day. I fear that the CIB + milk will only fuel him further, since that's yet more sugar. 12g in the moo + 7g in the NSA or 12g in the regular CIB. That's 24g of useless calories, so it makes Mr. Carb happy as can be. And has done nothing for you but pad your hip bones, know what I mean? You might wanna dig around for real protein that delivers a gob of protein, no sugar and make sup in water. Go see the protein perverts for about 10,000 ideas. Then you'll be ready for the POC, if not this time then next time. http://groups.yahoo.com/group/OSSG-Protein/ Hey, if we were perfect, we'd not be here together, right? Thanks, Vitalady, Inc. T www.vitalady.com If you are interested in PayPal, please click here: https://www.paypal.com/affil/pal=orders%40vitalady.com Help > , Ok, when you ask me questions like that it really makes me > realize how far off track I've gotten. I do get in all my water, but > I haven't had a protein drink in over 2 weeks and have resorted to > cookies and candy as my staple. How stupid is that? And then to > whine about it? Ok, so today is a better day and I'm tryin to get > back on track. I do drink milk but only fat free and with a NSA > Carnation Instant Breakfast in the morning.....or should I say that's > what I'm going back to. I think I'm going to jump on the bandwagon > and go with the group detoxing with protein and water for a few > days. I think if I go back to basics and get the sugar out of my > system maybe that would help. I appreciate all the help I can get > though. > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2003 In a message dated 4/11/2003 9:39:37 AM Central Daylight Time, mary.widick.hek5@... writes: > Carnation Instant Breakfast is what my dr initially said to drink. I > wasn't crazy about a lot of the other protein drinks. I only do the > instant breakfast in the morning then I also drink Herbalife fruit > protein drinks during the day. Those I do like. But have gotten > away from them for a bit. With the other protein drinks do you use > water or milk? > ---------------------------------- Most people on these lists would probably advise staying away from C.I.B. It doesn't deliver much protein for the amount of carbs--and we need to stay away from simple carbs. I don't know anything about the Herbalife drinks. If u email me the ingredients and values from the label, I could give u an opinion. Many people are lactose intolerant after the surgery and so avoid milk. But in addition, there are a lot of calories in milk that don't add to your protein at all. And of course, there is lactose--a form of sugar--in milk also which it would probably be best to avoid. You would get a much bigger " protein bang " with far fewer carbs and calories if you used a protein shake mixed only with water. There are all kinds of s/f flavorings you can add. Make sure any mix you use has all the full-chain essential amino acids. Carol A Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2003 In a message dated 4/11/2003 9:39:37 AM Central Daylight Time, mary.widick.hek5@... writes: > Carnation Instant Breakfast is what my dr initially said to drink. I > wasn't crazy about a lot of the other protein drinks. I only do the > instant breakfast in the morning then I also drink Herbalife fruit > protein drinks during the day. Those I do like. But have gotten > away from them for a bit. With the other protein drinks do you use > water or milk? > ---------------------------------- Most people on these lists would probably advise staying away from C.I.B. It doesn't deliver much protein for the amount of carbs--and we need to stay away from simple carbs. I don't know anything about the Herbalife drinks. If u email me the ingredients and values from the label, I could give u an opinion. Many people are lactose intolerant after the surgery and so avoid milk. But in addition, there are a lot of calories in milk that don't add to your protein at all. And of course, there is lactose--a form of sugar--in milk also which it would probably be best to avoid. You would get a much bigger " protein bang " with far fewer carbs and calories if you used a protein shake mixed only with water. There are all kinds of s/f flavorings you can add. Make sure any mix you use has all the full-chain essential amino acids. Carol A Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 30, 2003 hi laura, welcome! are there any other wls docs in your area? most docs/wls hospitals will have support groups, @ least that's the way it is in south florida. support meetings are great & it's great to network w/ folks that understand. i'm no nutritionist, but from what i gather, after about 18 months out, we pretty much become like the rest of the " wanting to lose/maintain weight " population. you know the drill: continuing to watch carbs, water, exercise, protein protein. a nutritionist endorsed the " zone " for me, a wl surgeon told us " atkins " style, so i guess that includes the south beach plan, which i hear is healthier. congrats on your success, high five!! lori h. 20 grateful months out Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 30, 2003 hi laura, welcome! are there any other wls docs in your area? most docs/wls hospitals will have support groups, @ least that's the way it is in south florida. support meetings are great & it's great to network w/ folks that understand. i'm no nutritionist, but from what i gather, after about 18 months out, we pretty much become like the rest of the " wanting to lose/maintain weight " population. you know the drill: continuing to watch carbs, water, exercise, protein protein. a nutritionist endorsed the " zone " for me, a wl surgeon told us " atkins " style, so i guess that includes the south beach plan, which i hear is healthier. congrats on your success, high five!! lori h. 20 grateful months out Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 31, 2003 Hi sorry to hear you've had NO support with doctors and ect.My Doctor said that after two years the most I'll still eat is 1 cup three times a day and no more.He don't want me snacking and make sure I eat mostly Protiens I can.But drink all the water I need.Congraduation on your loses and everything you did wonderful with it all.Is their anyone in your area that had the surgery are a support groups in the area? If so They can help with questions to.Good Luck and keep up the wonderful new life you have.a friend debkroll of Iowa.Surgery date Aug. 18,2003,379/279/16?.Take one day at a time. > Hi > My name is and I had the Gastric Bypass almost two years ago. > Here is my problem. The doctor that performed my surgery dropped my > insurance > company about a month after. The hospital that I had the surgery done > at > offered no support for the journey after the surgery. I have been on > my own > through all of this. No support, no post op care. I still do not know > how to > eat healthy. I did manage to lose the weight, but I am concerned that > I will > end up stretching my pouch out again. I was 310 pounds on the day of > surgery, now almost two years later I weigh 130 pounds. I dont want > to go > back. I have tried so hard to find help. What is a normal days meals > for > those of us who have had this surgery. How much should I be eating at > every > meal? Any help or support would be so greatly appreciated.I just dont > know > what to do anymore Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 31, 2003 Hi sorry to hear you've had NO support with doctors and ect.My Doctor said that after two years the most I'll still eat is 1 cup three times a day and no more.He don't want me snacking and make sure I eat mostly Protiens I can.But drink all the water I need.Congraduation on your loses and everything you did wonderful with it all.Is their anyone in your area that had the surgery are a support groups in the area? If so They can help with questions to.Good Luck and keep up the wonderful new life you have.a friend debkroll of Iowa.Surgery date Aug. 18,2003,379/279/16?.Take one day at a time. > Hi > My name is and I had the Gastric Bypass almost two years ago. > Here is my problem. The doctor that performed my surgery dropped my > insurance > company about a month after. The hospital that I had the surgery done > at > offered no support for the journey after the surgery. I have been on > my own > through all of this. No support, no post op care. I still do not know > how to > eat healthy. I did manage to lose the weight, but I am concerned that > I will > end up stretching my pouch out again. I was 310 pounds on the day of > surgery, now almost two years later I weigh 130 pounds. I dont want > to go > back. I have tried so hard to find help. What is a normal days meals > for > those of us who have had this surgery. How much should I be eating at > every > meal? Any help or support would be so greatly appreciated.I just dont > know > what to do anymore Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 3, 2004 Where are you from? I am in Ft. Lauderdale and my surgeon has a support group once a month. When I first paid for the surgery, it was an additional $600 program fee and that covers all post-op visits, all classes offered, and monthly support groups. Your surgeon should have something that will help you, otherwise, look around your area for other support groups. Good Luck Mindi 277/175/125?? Lap RNY 6/26/03 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 3, 2004 Where are you from? I am in Ft. Lauderdale and my surgeon has a support group once a month. When I first paid for the surgery, it was an additional $600 program fee and that covers all post-op visits, all classes offered, and monthly support groups. Your surgeon should have something that will help you, otherwise, look around your area for other support groups. Good Luck Mindi 277/175/125?? Lap RNY 6/26/03 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 4, 2004 There are no doctors near you that perform this surgery? Isn't Orlando only about an hour drive from you? I know my surgeon has an office in Orlando and they have support groups there. They also have a chef who has had the surgery and can help with your eating. There are a lot of good tools. Check out their web site and maybe that will help. www.usbariatrics.com Best of luck Mindi 277/175/125?? Lap RNY 6/26/03 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 4, 2004 There are no doctors near you that perform this surgery? Isn't Orlando only about an hour drive from you? I know my surgeon has an office in Orlando and they have support groups there. They also have a chef who has had the surgery and can help with your eating. There are a lot of good tools. Check out their web site and maybe that will help. www.usbariatrics.com Best of luck Mindi 277/175/125?? Lap RNY 6/26/03 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 26, 2004 Hi there, I am only 2 months out from my surgery but I did talk to my surgeon about it during our pre-surgery meetings. Of course he would not be doing the plastic surgery when its time but he did tell me that I should be at my goal weight before having the surgery. It does make me wonder about people that have cosmetic surgery when they are only part way to their goal. Maybe they have ALOT more skin to be removed that some of us will. Anyways, my dr said that they would only doing tummy tuck at one time and then legs, arms, bust, etc would require separate surgery dates because there are chances of infection with this type of surgery so they want to minimize the possibility at one time. I noticed you posted your surgery date is Dec. 10th. Thats ten months from now! You have lots of time to think about this and check out drs then. How long ago did you have your surgery and are you at your weight goal? Good luck!!! Bridget > I don't know if this is getting through. First time ever using this > new computer and trying to link with anyone of you slim beautyful > people. Posted a message on plastic surgery I don't know if it went > through. I'm trying again. If it works fine if not I'll try tonight > again. Need feedback on lower body lift. Anyone out there had it? my > belly hangs all the way down to the middle of my thighs. Seen 3 > surgeons. Almost decided on Dr. Dreidre Marshall. Schedule surgery > for Dec. 10. Miami area. Thanks guys. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 26, 2004 Hi there, I am only 2 months out from my surgery but I did talk to my surgeon about it during our pre-surgery meetings. Of course he would not be doing the plastic surgery when its time but he did tell me that I should be at my goal weight before having the surgery. It does make me wonder about people that have cosmetic surgery when they are only part way to their goal. Maybe they have ALOT more skin to be removed that some of us will. Anyways, my dr said that they would only doing tummy tuck at one time and then legs, arms, bust, etc would require separate surgery dates because there are chances of infection with this type of surgery so they want to minimize the possibility at one time. I noticed you posted your surgery date is Dec. 10th. Thats ten months from now! You have lots of time to think about this and check out drs then. How long ago did you have your surgery and are you at your weight goal? Good luck!!! Bridget > I don't know if this is getting through. First time ever using this > new computer and trying to link with anyone of you slim beautyful > people. Posted a message on plastic surgery I don't know if it went > through. I'm trying again. If it works fine if not I'll try tonight > again. Need feedback on lower body lift. Anyone out there had it? my > belly hangs all the way down to the middle of my thighs. Seen 3 > surgeons. Almost decided on Dr. Dreidre Marshall. Schedule surgery > for Dec. 10. Miami area. Thanks guys. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 26, 2004 Hey Bridget here again, Also check out obesityhelp.com I know that website has lots of feedback about the tummy tuck. It's called pannictomy (or something like that). > I don't know if this is getting through. First time ever using this > new computer and trying to link with anyone of you slim beautyful > people. Posted a message on plastic surgery I don't know if it went > through. I'm trying again. If it works fine if not I'll try tonight > again. Need feedback on lower body lift. Anyone out there had it? my > belly hangs all the way down to the middle of my thighs. Seen 3 > surgeons. Almost decided on Dr. Dreidre Marshall. Schedule surgery > for Dec. 10. Miami area. Thanks guys. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 26, 2004 Hey Bridget here again, Also check out obesityhelp.com I know that website has lots of feedback about the tummy tuck. It's called pannictomy (or something like that). > I don't know if this is getting through. First time ever using this > new computer and trying to link with anyone of you slim beautyful > people. Posted a message on plastic surgery I don't know if it went > through. I'm trying again. If it works fine if not I'll try tonight > again. Need feedback on lower body lift. Anyone out there had it? my > belly hangs all the way down to the middle of my thighs. Seen 3 > surgeons. Almost decided on Dr. Dreidre Marshall. Schedule surgery > for Dec. 10. Miami area. Thanks guys. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 26, 2004 > > I don't know if this is getting through. First time ever using > this > > new computer and trying to link with anyone of you slim beautyful > > people. Posted a message on plastic surgery I don't know if it > went > > through. I'm trying again. If it works fine if not I'll try > tonight > > again. Need feedback on lower body lift. Anyone out there had it? > my > > belly hangs all the way down to the middle of my thighs. Seen 3 > > surgeons. Almost decided on Dr. Dreidre Marshall. Schedule surgery > > for Dec. 10. Miami area. Thanks guys. My RNY surgeon told me I was not going to loose much more weight. right now the only bad thing is the trunk of my body. my thighs, legs, and arms are normal. my face is normal not alot of loose skin there. It is just my big belly. I went to Dr. Zaydon, Dr. Vazquez, and Dr. Dreidre Marshall. The only one I really liked was Marshall. She is a woman and has performed plastic surgery on after gastric bypass surgery patients. She also is an expert on flaps and breast reconstruction. Took me 3 months to get an appointment and waited 4 hrs. in her office. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 26, 2004 > > I don't know if this is getting through. First time ever using > this > > new computer and trying to link with anyone of you slim beautyful > > people. Posted a message on plastic surgery I don't know if it > went > > through. I'm trying again. If it works fine if not I'll try > tonight > > again. Need feedback on lower body lift. Anyone out there had it? > my > > belly hangs all the way down to the middle of my thighs. Seen 3 > > surgeons. Almost decided on Dr. Dreidre Marshall. Schedule surgery > > for Dec. 10. Miami area. Thanks guys. My RNY surgeon told me I was not going to loose much more weight. right now the only bad thing is the trunk of my body. my thighs, legs, and arms are normal. my face is normal not alot of loose skin there. It is just my big belly. I went to Dr. Zaydon, Dr. Vazquez, and Dr. Dreidre Marshall. The only one I really liked was Marshall. She is a woman and has performed plastic surgery on after gastric bypass surgery patients. She also is an expert on flaps and breast reconstruction. Took me 3 months to get an appointment and waited 4 hrs. in her office. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 27, 2007 I need some help. I am so frustrated just like you all. I have been on Prednisone, Methotrexate, Imuran, Plaquenil, and now chemotherapy infusions with Cytoxin and Mesna. They have been trying the chemotherapy for three months and I just had another brain MRI and it showed no improvement. I have been waiting for three weeks now for my doctor to tell me the next plan of action, but he has not gotten back with me. I made an appointment for this Friday with a neurologist. My doctor said the next time I see him (in three months), maybe he will get me in to see the neurologist also. This is at University of Michigan (7 hours away from where I live). I made an appointment on my own with a neurologist in Marquette which is two hours away. I don't know what else to do. It seems like nothing is working and I have more and more problems every month. He thinks my joint pain is a joke and told me to try Motrin (take 9 a day). I did that before and three months ago had a terrible GI bleed. Now I have neck pain awful and back and rib pain. I don't think he believes me. The Motrin is a joke and I am afraid of another GI bleed. I call myself the tin man from all the joint pain. Any advice, I would love to hear what you think. Lori Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 27, 2007 You may have read that some of us are on Remicade. It is very expensive and not all insurance companies are willing to pay, but it is worth suggesting to whichever dr you think will be most open to the idea. It has been tried on sarcoidosis for several years but many dr's don't know about it. I take Remicade and Imuran. I also get GI bleeds, so my dr's only prescribe codeine for pain. Now I take tylenol & codeine. It works pretty well on pain without stomach bleeds (gets you constipated though, so look out for that). Those with GI bleed problems should NEVER take aspirin or ibuprophen. That unfortunately leaves medications like codeine. Hope this helps. Wish there was an answer for you about finding a good dr. They seem in short supply! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 29, 2007 I have been on Remicade for 3 years now and it has helped me tremendously. Where are you located? Some insurance companies will pay for the Remicade. Also, if I and others in the group know where you are located, one or more of us might be able to recommend a doc that will really help you. I am from New Hampshire and go to Boston for my neurologist and treatments. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 30, 2007 Lori, One thing to remember with sarcoidosis is that rarely do the granulomas disappear. What does happen is that you can slow the progression of the disease. Sarcoidosis is not like cancer, where they can go in surgically and remove the tumor or organ where the sarc is. The goal is to stop the progression of the sarcoidosis. I do think your MD is taking you seriously, or he wouldn't have put you on Cytoxan. I think that what is happening is that he doesn't know what else to do from here. I know this is blunt-- and I'm not saying you're going to die. For many sarcoidosis patients, the progression of their sarcoidosis is a long, slow process. For me, I was diagnosed 16 yrs ago, and for the first 8 yrs, it was a nuisance-- and I had Md's telling me I had fibromyalgia, chronic pain syndrome, etc. I know now that the FM was (my opinion)-- the sarcoidosis induced arthritis. Print out the brochure from FSR-- www.stopsarcoidosis.org and give it to your MD. It is by far the best and most concise brochure that I've run across. Also, print out the article on Epilepsy and sarcoidosis that is in the ARCHIVES. This also explains much of what happens when we start getting symptoms of neuro involvement. It also throughly explains what happens to the hypothalmus and pituitary glands, along with the explanation that you can have a "clear" CT and MRI scans-- but still have sarc involvement. Much of which will be from the chronic inflammation in our bodies. (It can be in the form of vasculitis--which is inflammation of the blood vessels). You may need a combinaton of Plaquenil, Methotrexate and Inflixamab (Remicade) or Enbrel or Humira. That way you've got several bases covered, the Plaquenil helps with the pulmonary issues, the MTX with the joint pain (arthritis) and the Remicade with the systemic involvement. I do know that for me-- the combination I mentioned above does well with the joint and "inside" the bone pain-- as well as the different arthritis's I have going on-- but does little for the lymphatic involvement that causes alot of pain. This disease has to be 'custom fitted' to each of us in regards to treatment. That seems to be one of the biggest issues-- what works for me might not be the right combo for you. I will say this-- it's easy to get discouraged,-- and I understand where you are coming from. We've all been there- and will be back again. I also know that even as scary as this may seem, it is important to keep your head on-- so that you can enjoy the life you have now-- and keep the faith that tomorrow (one of the tomorrows) will bring some peace to your body. You may also want to check out www.arthritis.org and read the Vitamins and minerals articles (they put out an issue each year) and it will give you some ideas on what vitamins and minerals can help with systemic inflammation. If the gut issue is one that causes trouble, you may need Aciphex tablets and Carafate. This really cuts the gastric issues with the meds, and can help to keep those problems at bay. Both are by prescription-- and I know that with all the years of anti-inflammatories, the immunosuppresants, that they do become one of the treatment protocols we have to use to keep the side effects from creating more issues. I hope this helps, and truly, I'm sorry that you're having to deal with this-- but please- to panic is only going to make things worse. Stress sets off the immune system and adds even more to the pile. Taking a deep breath for all of us, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 31, 2007 Tracie, Thank you so much, that helps. I did see a neurologist yesterday and he did a spinal tap, MRI of the crevical spine and some other test for my vision (they put leads to your scalp and you stare at a TV screen with black and white squares on it to measure your brain response or something)? He seemed real aggressive. My doctor at U of M just emailed me and said the Cytoxan infusions are not working so we should try something else, maybe in a pill form again. Then he asked me what did I think? So I will see what he recommends next. Thanks again, you made me feel better. Lori > > Lori, > > One thing to remember with sarcoidosis is that rarely do the granulomas > disappear. What does happen is that you can slow the progression of the disease. > Sarcoidosis is not like cancer, where they can go in surgically and remove > the tumor or organ where the sarc is. The goal is to stop the progression of > the sarcoidosis. > I do think your MD is taking you seriously, or he wouldn't have put you on > Cytoxan. I think that what is happening is that he doesn't know what else to do > from here. > I know this is blunt-- and I'm not saying you're going to die. For many > sarcoidosis patients, the progression of their sarcoidosis is a long, slow > process. For me, I was diagnosed 16 yrs ago, and for the first 8 yrs, it was a > nuisance-- and I had Md's telling me I had fibromyalgia, chronic pain syndrome, > etc. I know now that the FM was (my opinion)-- the sarcoidosis induced > arthritis. > Print out the brochure from FSR-- www.stopsarcoidosis.org and give it to your > MD. It is by far the best and most concise brochure that I've run across. > Also, print out the article on Epilepsy and sarcoidosis that is in the > ARCHIVES. This also explains much of what happens when we start getting symptoms of > neuro involvement. It also throughly explains what happens to the > hypothalmus and pituitary glands, along with the explanation that you can have a " clear " > CT and MRI scans-- but still have sarc involvement. Much of which will be > from the chronic inflammation in our bodies. (It can be in the form of > vasculitis--which is inflammation of the blood vessels). > You may need a combinaton of Plaquenil, Methotrexate and Inflixamab > (Remicade) or Enbrel or Humira. That way you've got several bases covered, the > Plaquenil helps with the pulmonary issues, the MTX with the joint pain (arthritis) > and the Remicade with the systemic involvement. > I do know that for me-- the combination I mentioned above does well with the > joint and " inside " the bone pain-- as well as the different arthritis's I have > going on-- but does little for the lymphatic involvement that causes alot of > pain. > This disease has to be 'custom fitted' to each of us in regards to treatment. > That seems to be one of the biggest issues-- what works for me might not be > the right combo for you. > I will say this-- it's easy to get discouraged,-- and I understand where you > are coming from. We've all been there- and will be back again. > I also know that even as scary as this may seem, it is important to keep your > head on-- so that you can enjoy the life you have now-- and keep the faith > that tomorrow (one of the tomorrows) will bring some peace to your body. > You may also want to check out www.arthritis.org and read the Vitamins and > minerals articles (they put out an issue each year) and it will give you some > ideas on what vitamins and minerals can help with systemic inflammation. > If the gut issue is one that causes trouble, you may need Aciphex tablets and > Carafate. This really cuts the gastric issues with the meds, and can help to > keep those problems at bay. Both are by prescription-- and I know that with > all the years of anti-inflammatories, the immunosuppresants, that they do > become one of the treatment protocols we have to use to keep the side effects from > creating more issues. > > I hope this helps, and truly, I'm sorry that you're having to deal with > this-- but please- to panic is only going to make things worse. Stress sets off > the immune system and adds even more to the pile. > > Taking a deep breath for all of us, > Tracie > NS Co-owner/moderator > > > > > ************************************** > See what's free at http://www.aol.com. > Quote Share this post Link to post Share on other sites
