Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 You can buy enzymes in the health food stores, but you will face a menagerie of products and descriptions - and you may just want to try one of those. The ones talked about here you can get as follows: Peptizyde, HN-Zyme Prime at www.houstonni.com SerenAid at www.serenaid.com EnzymAid at www.kirkmanlabs.com If I left one out that someone has used, please jump in. I would recommend that you visit each of these places, read what is on the site, and talk to a representative. The formulations are different so you will want to know which is the strong point of each. There is information on the enzymesandautism message board, but not much comparitive data. I will email you a few summary results. . > Thanks to those who educated me on the enzyme issue. I think I am going to > buy it for my son. I am assuming I would just go into a HFS and ask for it. > Correct? > > - Father of a handsome Autistic 6yo " Tito " > anyone know the current status of Mayer hot dogs? > > > > > > > > > > > > I checked the GFCF website, and it lists Mayer hot dogs as gfcf. I > called Mayer to confirm; the representative said she couldn't answer > my question while on the phone, but she could send me a list of all products > produced by Mayer and the parent company (Kraft). When I got my list > in the mail, it listed no Mayer products at all. > > > > I called Mayer again, and they again said they would send me a list > of all products. The rep said she thought at least some Mayer > products are gfcf and perhaps a page had been left out of the original list > I received from Kraft. > > > > However, when I received the second list from Kraft, no Mayer > products were included. > > > > So.......I guess this means Mayer products are now off limits. Does > anyone have any further info?<br clear=all><hr>Get your FREE download of MSN > Explorer at <a > href= " http://explorer.msn.com " >http://explorer.msn.com</a><br></p> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 In a message dated 9/10/01 8:54:57 PM Pacific Daylight Time, nant8@... writes: << I am going to a new Dr. tomorrow at the diagnostic clinic in Houston. He is an internalist and rheum. so I hope he has some way of helping me. >> , Good luck at the new dr tomorrow... Please let us know what he says... I'm thinking of ya.. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 In a message dated 9/10/01 8:54:57 PM Pacific Daylight Time, nant8@... writes: << I am going to a new Dr. tomorrow at the diagnostic clinic in Houston. He is an internalist and rheum. so I hope he has some way of helping me. >> , Good luck at the new dr tomorrow... Please let us know what he says... I'm thinking of ya.. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Cathy, my prayers will continue to be with you. You are one more wonderful person and daughter. You've made your dad proud. God bless Jo thanks I want to thank all of you for the plant. That was such a sweet thing for you all to do for me. The Cleveland Clinic is really quite a place. And if anyone needed a doc I would recommend Dr. Murthy. He is a really caring man. But...he was one of the few that knew what we were talking about. I felt like the RP teacher for the nurses and even the respiratory therapists. And I have you all to thank for the knowledge I do have. After a while I was tired of all of the services stopping by at the foot of the bed and whispering, just like on TV. It is just a shame that Dad wasn't diagnosed sooner. That was the problem. , please send me your address. A few of my relatives have asked about the association. Again, thanks to all of your for the gift of your knowledge. You allowed me to fight for him, and I knew when it was time to give up. I have met some very special people during these last months. And you all are the best!! CathyD DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Cathy, my prayers will continue to be with you. You are one more wonderful person and daughter. You've made your dad proud. God bless Jo thanks I want to thank all of you for the plant. That was such a sweet thing for you all to do for me. The Cleveland Clinic is really quite a place. And if anyone needed a doc I would recommend Dr. Murthy. He is a really caring man. But...he was one of the few that knew what we were talking about. I felt like the RP teacher for the nurses and even the respiratory therapists. And I have you all to thank for the knowledge I do have. After a while I was tired of all of the services stopping by at the foot of the bed and whispering, just like on TV. It is just a shame that Dad wasn't diagnosed sooner. That was the problem. , please send me your address. A few of my relatives have asked about the association. Again, thanks to all of your for the gift of your knowledge. You allowed me to fight for him, and I knew when it was time to give up. I have met some very special people during these last months. And you all are the best!! CathyD DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Cathy D, Again, I'm so sorry about your dad.. I'm so glad that you found us and that we could be of some help to you... This is the main goal of the Foundation...We want to educated the public and the medical profession. Please stay in touch... We will always be here for you. You are a great advocate for us.. If you ever need anything, you can e mail me privately. Please know that you and your family are in my thoughts and prayers. Cathy,...What was your Dad's full name? We do have a page in honor of those we have lost. hugs RP Foundation c/o Colloran 775 Bounty Place Manteca, CA 95337 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Cathy D, Again, I'm so sorry about your dad.. I'm so glad that you found us and that we could be of some help to you... This is the main goal of the Foundation...We want to educated the public and the medical profession. Please stay in touch... We will always be here for you. You are a great advocate for us.. If you ever need anything, you can e mail me privately. Please know that you and your family are in my thoughts and prayers. Cathy,...What was your Dad's full name? We do have a page in honor of those we have lost. hugs RP Foundation c/o Colloran 775 Bounty Place Manteca, CA 95337 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Hi ...thanks for your note, My levels were within normal ranges early on after beginning the Tap....and we slowly dropped the dosage...I did my own reducing at times and always fessed up to my Endo who never had a problem with it. She has also always been good about ordering certain antibody tests if I asked for them. I felt like I wasn't at all impatient and stayed on the Tap for probably 2yrs and 3 months all together. Just hoped for a bit of time off from any meds. Anyway, I am keeping everything in perspective...my husband's sister was just diagnosed with breast cancer yesterday. I will try not to pout too much about my own issues. Best wishes, Ruthie Re: been away but back now with disappointing news > Hi Ruthie: > > Welcome back, I just showed up again also. I was on PTU for about 18 > months before going into remission, thereafter, I had some months of > changes in my levels - I had to work my PTU dosage and with labs every > 3-4 weeks. However, the range I was fluctuating in was not as high > (or low for TSH) as your recent labs. > > Now, I'm watching myself and always in the back of my mind is the > question of how long the remission will continue. Of course I don't > want to take anything at all, but I know that I would get back on ATDs > for as long as it takes if I needed to. I completely understand and > agree with your concerns about surgery. Never had one until I was 40, > and then had 3. I know that the first surgery (along with quitting > smoking) kicked my kind of dormant Graves into full swing. > > In retrospect, I wish when I was at the point you are at now, that I > was a bit more careful in monitoring my dosage and my labs - I got > impatient because I so wanted to be in remission, and sometimes made > moves in adjusting my meds that caused confusion and discomfort - so I > hope you will take your time and be as methodical as you can as you > deal with this new challenge. > > Good luck, > > > > > > > What I need to know is this....I recall someone on this list having > > reported being on Tap for 20 + years. Please tell me...what are the > > risks and have many people done this...stayed on Tap long term?? > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2003 Report Share Posted May 30, 2003 In a message dated 5/29/2003 10:44:53 PM Eastern Daylight Time, rschaffer2@... writes: > Anyway, > I am keeping everything in perspective...my husband's sister was just > diagnosed with breast cancer yesterday. I will try not to pout too much > about my own issues. Best wishes, > Ruthie Ruthie, sorry about your Sister-in-Law. It does kinda ground a person doesn't it? Best of luck to her. Betty PS If your are expecting an answer from me, and you don't get it, please email me back with a friendly reminder. " To err is human; to forgive, divine. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 - I heard that referred another patient to St. Judes for a bone marrow transplant. I've not heard it firsthand from him though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Thank you , My boyfriend currently is seeing a doctor in London Ontario, this doctor communicates regularly with the doctor you mentioned. Is dr. hirano the one trying out the bone marrow transfusion? > - > > There is a very good doc. at Columbia Medical in New York City who > treats MNGIE. His name is Dr. Hirano. I have symptoms that match MNGIE but my > thimadine kinase level was normal. I'm actually going to see Dr. Hirano next > month. He is excellent in his field. I wish your best in your search and answers > for your boyfriend. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Jen, As you have probably seen there are different ages for onset and different amount of impact. There is a group called mito oldies which is adult folks with mito. That at least implies that some people get old enough to be " oldies " . My understanding is that most people don't actullly die of the mito but of the complication of having such low energy. Some organ doesn't have enough energy or the ability to breath is too compromised. I know it sounds stupid but if you or partner lived long enough to have children and mito is mostly inherited then the kids could live as long as you? The country song " live like you were dying " has lots of good points for all of us with the sick kids. Do you find yourself more appreciative of everyday ordinary things? Do you do things now instead of putting them off to some unspecified future as you may not have a future? I think that the mito makes you relize sooner how much you appreciate your kids. Also when we were dx the doctor told us the worst cases were dx first. Then as time goes by the less ill can also be put into the same dx. They don't look for mito first. Twana > Are all Mito disorders terminal? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2011 Report Share Posted December 12, 2011 I want to thank all of you for the plant. That was such a sweet thing for you all to do for me. The Cleveland Clinic is really quite a place. And if anyone needed a doc I would recommend Dr. Murthy. He is a really caring man. But...he was one of the few that knew what we were talking about. I felt like the RP teacher for the nurses and even the respiratory therapists. And I have you all to thank for the knowledge I do have. After a while I was tired of all of the services stopping by at the foot of the bed and whispering, just like on TV. It is just a shame that Dad wasn't diagnosed sooner. That was the problem. , please send me your address. A few of my relatives have asked about the association. Again, thanks to all of your for the gift of your knowledge. You allowed me to fight for him, and I knew when it was time to give up. I have met some very special people during these last months. And you all are the best!! CathyD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2011 Report Share Posted December 12, 2011 I want to thank all of you for the plant. That was such a sweet thing for you all to do for me. The Cleveland Clinic is really quite a place. And if anyone needed a doc I would recommend Dr. Murthy. He is a really caring man. But...he was one of the few that knew what we were talking about. I felt like the RP teacher for the nurses and even the respiratory therapists. And I have you all to thank for the knowledge I do have. After a while I was tired of all of the services stopping by at the foot of the bed and whispering, just like on TV. It is just a shame that Dad wasn't diagnosed sooner. That was the problem. , please send me your address. A few of my relatives have asked about the association. Again, thanks to all of your for the gift of your knowledge. You allowed me to fight for him, and I knew when it was time to give up. I have met some very special people during these last months. And you all are the best!! CathyD Quote Link to comment Share on other sites More sharing options...
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