Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Irene and Ann-Marie I was going to wait before posting this, but I am having some success with using the Activia, made by Danon. It has the PB in it. My stool consistancy is more normal and the gas is really reduce. I have taken the acidophilus for a long time and for me the Activia is working better. Keep your fingers crossed that it will continue. Creatine is now being prescribed by several mito and MDA docs to be taken on a regular basis. I have been on it (prescribed by Dr. Cohen) for about a year and a half. Dr. Cohen commented on the fact that I seemed more mentally alert when I saw him after a year on it. laurie > Hi Irene, > > Sorry to hear that you missed the Chat on Monday. My computer crashed about > 6 months ago, so I know what it is like. Glad it is fixed. When I don't have > computer access I feel so lonely, miss all of my friends and my support > groups. It is a life line for so many of us. > > If you go to www.mda.org click on " Chats " (top of page) on the next page > click on " transcripts " and then go down the page to the right date and the > chat that you are interested in viewing. Hope this helps!! I hope my > instructions are correct, if not sorry.... > > About the mito cocktail: > > people with Mito should try one component of the Cocktail at a time. Take > it for a few weeks (or longer)and than add another part of the cocktail. If > you take more than one vitamin or co-factor at once it will be hard to know > what is working and what isn't working for you. > > I also know that a lot of people think that just taking vitamins or > co-factors won't harm them but with Mito they can. Our bodies are very > different than " Normal People " we are not Normal!! > > Most of us start with CoQ10 and go on from there. You really should be > under the care of a doctor before starting the cocktail. Your doctor will be > able to do blood work on you to see if you really do need the extra vitamins > and co-factors. Some people's levels are high enough and they don't need any > extra. > > Also the creatine should be used with caution. Some experts say that you > can take it on a " on going " basis and others state that it should only be > used during a " crisis " . This is why it is important to have a doctor > overseeing you and the cocktail you take. > > Do you have a Mito doctor or do you go to a MDA Clinic? These doctors would > be able to help you with the proper vitamins and co-factors that your body > needs. > > I don't have any experience with Beano or Gas X products. I am sure someone > here does. Although you might want to try some kind of acidophilus. There is > also a product called " Primadophilus Bifidus which is coated to protect your > stomach. It also has 10 Billion microorganisms per Gram. The Primadophilus > Bifidus is especially for " Intestinal Release " , and it is in the > refrigerated section of the Health food Stores. If you continue to have > pain, bloating and gas you might want to see a GI Specialist. Lots of people > with Mito also have severe GI problems, I know I do. > > Good Luck and I hope I was able to help in some small way. > > Hugs, > Ann-Marie > > Hi everyone > > > I missed Monday's chat group. I was very disappointed. I had to have > my computer re done. Now I am back. I finally tried a mito cocktail. > It consists of riboflavin,coQ10,creaetine,vitamin E. > It's been about a > week. I am glad to have finally started something. I am to try these > for a while. I wanted to know should I feel something right away, or > in a few days? I also have written in e mails about my stomach pains. > I said that the pain was terrible,bloating, and gas build up was > unbelievable. I had been originally using Gas X. Then that stopped > working. Then I started taking Beano before every meal. That was doing > great. But....I started to notice my sugar level going up and up. I > stopped the Beano and my sugar has been going down. So maybe that was > it. Has anyone else ever used Beano and had it effect their sugar > level?Now I am trying omnigest ez. So far so good. I hopefully will > talk to you alll on this Monday's chat group. I really did miss you > guys. Is there a way I could check on that group chat, to see what I > missed? Take care hope you are all hanging in there ok. > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded of > their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one > is automatically moderated or removed depending on the severity of the > attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Alan I just got social security disablity approval in January. I know of several others of all ages who have gotten it. It isn't lots more than regular social security, but every little bit helps. It also doesn't lower your benefits by getting it before 65 (or whatever your official amount of time). laurie > Hi, I'm new to whole Mito thing. Is it your experience that Mito. people > are able to collect Social Security? I'm being retired from the military and > I'm worried I'll lose everything. Thanks, Alan > > peetie peetie@...> wrote: Hi Irene, > > > Sorry to hear that you missed the Chat on Monday. My computer crashed about > 6 months ago, so I know what it is like. Glad it is fixed. When I don't have > computer access I feel so lonely, miss all of my friends and my support > groups. It is a life line for so many of us. > > If you go to www.mda.org click on " Chats " (top of page) on the next page > click on " transcripts " and then go down the page to the right date and the > chat that you are interested in viewing. Hope this helps!! I hope my > instructions are correct, if not sorry.... > > About the mito cocktail: > > people with Mito should try one component of the Cocktail at a time. Take > it for a few weeks (or longer)and than add another part of the cocktail. If > you take more than one vitamin or co-factor at once it will be hard to know > what is working and what isn't working for you. > > I also know that a lot of people think that just taking vitamins or > co-factors won't harm them but with Mito they can. Our bodies are very > different than " Normal People " we are not Normal!! > > Most of us start with CoQ10 and go on from there. You really should be > under the care of a doctor before starting the cocktail. Your doctor will be > able to do blood work on you to see if you really do need the extra vitamins > and co-factors. Some people's levels are high enough and they don't need any > extra. > > Also the creatine should be used with caution. Some experts say that you > can take it on a " on going " basis and others state that it should only be > used during a " crisis " . This is why it is important to have a doctor > overseeing you and the cocktail you take. > > Do you have a Mito doctor or do you go to a MDA Clinic? These doctors would > be able to help you with the proper vitamins and co-factors that your body > needs. > > I don't have any experience with Beano or Gas X products. I am sure someone > here does. Although you might want to try some kind of acidophilus. There is > also a product called " Primadophilus Bifidus which is coated to protect your > stomach. It also has 10 Billion microorganisms per Gram. The Primadophilus > Bifidus is especially for " Intestinal Release " , and it is in the > refrigerated section of the Health food Stores. If you continue to have > pain, bloating and gas you might want to see a GI Specialist. Lots of people > with Mito also have severe GI problems, I know I do. > > Good Luck and I hope I was able to help in some small way. > > Hugs, > Ann-Marie > Hi everyone > > > I missed Monday's chat group. I was very disappointed. I had to have > my computer re done. Now I am back. I finally tried a mito cocktail. > It consists of riboflavin,coQ10,creaetine,vitamin E. > It's been about a > week. I am glad to have finally started something. I am to try these > for a while. I wanted to know should I feel something right away, or > in a few days? I also have written in e mails about my stomach pains. > I said that the pain was terrible,bloating, and gas build up was > unbelievable. I had been originally using Gas X. Then that stopped > working. Then I started taking Beano before every meal. That was doing > great. But....I started to notice my sugar level going up and up. I > stopped the Beano and my sugar has been going down. So maybe that was > it. Has anyone else ever used Beano and had it effect their sugar > level?Now I am trying omnigest ez. So far so good. I hopefully will > talk to you alll on this Monday's chat group. I really did miss you > guys. Is there a way I could check on that group chat, to see what I > missed? Take care hope you are all hanging in there ok. > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded of > their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one > is automatically moderated or removed depending on the severity of the > attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Laurie, So glad that you are having success with the Activia. I have seen the commercials for it, but I haven't yet tried it. I am keeping my fingers crossed for you in hopes that you continue to get the relief you need. Keep us updated on how things go!! As far as the creatine goes I know that MDA doctors and the Mito specialists have been recommending that it be taken on a regular basis, but there are still some out there they think/believe that it shouldn't be taken regularly. As different as each person with Mito is even our Mito specialist have different ideas and teachings!! I guess what I was also trying to say was that no one should put themselves on the mito cocktail without their doctors approval, in case a certain vitamin or co-factor is wrong for them. Hugs, Ann-Marie Hi everyone > > > I missed Monday's chat group. I was very disappointed. I had to have > my computer re done. Now I am back. I finally tried a mito cocktail. > It consists of riboflavin,coQ10,creaetine,vitamin E. > It's been about a > week. I am glad to have finally started something. I am to try these > for a while. I wanted to know should I feel something right away, or > in a few days? I also have written in e mails about my stomach pains. > I said that the pain was terrible,bloating, and gas build up was > unbelievable. I had been originally using Gas X. Then that stopped > working. Then I started taking Beano before every meal. That was doing > great. But....I started to notice my sugar level going up and up. I > stopped the Beano and my sugar has been going down. So maybe that was > it. Has anyone else ever used Beano and had it effect their sugar > level?Now I am trying omnigest ez. So far so good. I hopefully will > talk to you alll on this Monday's chat group. I really did miss you > guys. Is there a way I could check on that group chat, to see what I > missed? Take care hope you are all hanging in there ok. > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded of > their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one > is automatically moderated or removed depending on the severity of the > attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 lies was approved for SSDI a year ago. She was originally denied but approved on appeal with the help of an advocate. I expect will have an easier time at 18 (if she applies) as she was declared disabled as a young child (but denied based on parental income and asset). Our advocate said 75% are denied initially and then approved if they appeal and have additional medical records sent. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Ann-Marie I should have added that working with a doctor is very important. I won't even take over the counter meds without checking with my doc first. We are all so different and we take so much " stuff " that interaction possibilities are huge. laurie > Hi Laurie, > > So glad that you are having success with the Activia. I have seen the > commercials for it, but I haven't yet tried it. I am keeping my fingers > crossed for you in hopes that you continue to get the relief you need. Keep > us updated on how things go!! > > As far as the creatine goes I know that MDA doctors and the Mito > specialists have been recommending that it be taken on a regular basis, but > there are still some out there they think/believe that it shouldn't be taken > regularly. As different as each person with Mito is even our Mito specialist > have different ideas and teachings!! > > I guess what I was also trying to say was that no one should put themselves > on the mito cocktail without their doctors approval, in case a certain > vitamin or co-factor is wrong for them. > > > Hugs, > Ann-Marie > > > > > Hi everyone > > > > > > I missed Monday's chat group. I was very disappointed. I had to have > > my computer re done. Now I am back. I finally tried a mito cocktail. > > It consists of riboflavin,coQ10,creaetine,vitamin > E. > > It's been about a > > week. I am glad to have finally started something. I am to try these > > for a while. I wanted to know should I feel something right away, or > > in a few days? I also have written in e mails about my stomach > pains. > > I said that the pain was terrible,bloating, and gas build up was > > unbelievable. I had been originally using Gas X. Then that stopped > > working. Then I started taking Beano before every meal. That was > doing > > great. But....I started to notice my sugar level going up and up. I > > stopped the Beano and my sugar has been going down. So maybe that > was > > it. Has anyone else ever used Beano and had it effect their sugar > > level?Now I am trying omnigest ez. So far so good. I hopefully will > > talk to you alll on this Monday's chat group. I really did miss you > > guys. Is there a way I could check on that group chat, to see what I > > missed? Take care hope you are all hanging in there ok. > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > > herein are not necessarily those of the list moderators. The author of > this > > e mail is entirely responsible for its content. List members are > reminded of > > their responsibility to evaluate the content of the postings and > consult > > with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends > one > > is automatically moderated or removed depending on the severity of the > > attack. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Alan, My husband has been getting military disability since 1977. When I met him in 1990 it was $310/month and is now up to $595.00. It is based on his pay as an E-3 in 1976. It is considered retirement pay and goes up like social security each year. The cola index it goes up each year is based on the date you are retired and your initial amount is based on your date of retirement. We get a newsletter every quarter and it gave the percentages in one of them. It is for the marine corp but I believe all the branches work the same as long as you have 20 yrs in or have a medical disability retirement. You mention you are being retired from the military--is it a medical disability retirement? If so your retirement pay may not be subject to federal and state tax. My husband has a 30% disability from the marine corp and is exempt from taxes. But the VA rates him at 20% for his back and ankle injury in 1976 and the pay would be less. You may want to check to see how much your would be entitled to with retirement pay versus social security pay. It is my understanding that when my husband turns 65 (he is now 50) that he will receive only social security or the retirement pay not both. Janet Sample Hi everyone > > > I missed Monday's chat group. I was very disappointed. I had to have > my computer re done. Now I am back. I finally tried a mito cocktail. > It consists of riboflavin,coQ10,creaetine,vitamin E. > It's been about a > week. I am glad to have finally started something. I am to try these > for a while. I wanted to know should I feel something right away, or > in a few days? I also have written in e mails about my stomach pains. > I said that the pain was terrible,bloating, and gas build up was > unbelievable. I had been originally using Gas X. Then that stopped > working. Then I started taking Beano before every meal. That was doing > great. But....I started to notice my sugar level going up and up. I > stopped the Beano and my sugar has been going down. So maybe that was > it. Has anyone else ever used Beano and had it effect their sugar > level?Now I am trying omnigest ez. So far so good. I hopefully will > talk to you alll on this Monday's chat group. I really did miss you > guys. Is there a way I could check on that group chat, to see what I > missed? Take care hope you are all hanging in there ok. > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded of > their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one > is automatically moderated or removed depending on the severity of the > attack. > > > > > Quote Link to comment Share on other sites More sharing options...
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