Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 In a message dated 8/16/02 4:52:09 PM Eastern Daylight Time, shelleytinsley2257@... writes: > . So, today, I want to know more > about the auto islet transplant. I was a little scared of it, but, > the more I read, the more interested I become. > > Dear , I will get back with you next week about information on the surgery. I have had the surgery and I will tell you all that I know and experienced with it. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Poncho, The doctor that I see now is covered by my insurance, and I have had several surgeries for this disease- all of which have been covered. I don't want to sound irrational when I say this, but I understand this disease is horrid - I know how bad it hurts. My children and husband have suffered so because of my disease - right along with me. I do believe that I can recover from surgery - I have several times! I have a faith in God that, right now, I believe could move mountains. I'm sure there are others out there who feel the same, so I would ask that you refrain from being so negative in your comments about recovery??? and surgery???. I'm trying to raise my children and live my life in as positive as manner as possible. I do not need someone trying to bring me down by the negativity that I try to fight on a daily basis. I understand that this disease causes bitterness, but some of us can not accept defeat to a disease. I have been blessed by this Board, and it continues on a daily basis. My questions were out there, as I am to have the partial pancreatectomy or Puestow (most likely the first of the two) on October 12. I have to look at my options, and, as so many have done on this Board, I wanted to receive good and helpful information - not someone pointing at me with their finger as if I'm a child who knows nothing about what is happening in my body. So, thank you for your information, but I choose to look at life as it is supposed to be - each day is a blessing from God Almighty. I hope that you have a blessed day and life. poncho9191@... wrote:In a message dated 8/16/02 4:52:11 PM Eastern Daylight Time, shelleytinsley2257@... writes: > How does anyone get this covered by insurance???? > > If you don't, how expensive is the surgery? > > Hi Shelby,(another midwestener) Coverage by insurance is dependent on your coverage, thin ice here Shelby, got to get a covered Dr. that does good treatment of this disease. It may be difficult Surgery is expensive and generally done as a last resort. Keep reading thisboard for details in everyone's experience Recovery from Surgery? Recovery from Panc. I think you need much more information from this board. best wish, poncho - ga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Poncho, The doctor that I see now is covered by my insurance, and I have had several surgeries for this disease- all of which have been covered. I don't want to sound irrational when I say this, but I understand this disease is horrid - I know how bad it hurts. My children and husband have suffered so because of my disease - right along with me. I do believe that I can recover from surgery - I have several times! I have a faith in God that, right now, I believe could move mountains. I'm sure there are others out there who feel the same, so I would ask that you refrain from being so negative in your comments about recovery??? and surgery???. I'm trying to raise my children and live my life in as positive as manner as possible. I do not need someone trying to bring me down by the negativity that I try to fight on a daily basis. I understand that this disease causes bitterness, but some of us can not accept defeat to a disease. I have been blessed by this Board, and it continues on a daily basis. My questions were out there, as I am to have the partial pancreatectomy or Puestow (most likely the first of the two) on October 12. I have to look at my options, and, as so many have done on this Board, I wanted to receive good and helpful information - not someone pointing at me with their finger as if I'm a child who knows nothing about what is happening in my body. So, thank you for your information, but I choose to look at life as it is supposed to be - each day is a blessing from God Almighty. I hope that you have a blessed day and life. poncho9191@... wrote:In a message dated 8/16/02 4:52:11 PM Eastern Daylight Time, shelleytinsley2257@... writes: > How does anyone get this covered by insurance???? > > If you don't, how expensive is the surgery? > > Hi Shelby,(another midwestener) Coverage by insurance is dependent on your coverage, thin ice here Shelby, got to get a covered Dr. that does good treatment of this disease. It may be difficult Surgery is expensive and generally done as a last resort. Keep reading thisboard for details in everyone's experience Recovery from Surgery? Recovery from Panc. I think you need much more information from this board. best wish, poncho - ga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Thanks, Shirley. I appreciate your help! shirlf3542@... wrote:In a message dated 8/16/02 4:52:09 PM Eastern Daylight Time, shelleytinsley2257@... writes: > . So, today, I want to know more > about the auto islet transplant. I was a little scared of it, but, > the more I read, the more interested I become. > > Dear , I will get back with you next week about information on the surgery. I have had the surgery and I will tell you all that I know and experienced with it. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Thanks, Shirley. I appreciate your help! shirlf3542@... wrote:In a message dated 8/16/02 4:52:09 PM Eastern Daylight Time, shelleytinsley2257@... writes: > . So, today, I want to know more > about the auto islet transplant. I was a little scared of it, but, > the more I read, the more interested I become. > > Dear , I will get back with you next week about information on the surgery. I have had the surgery and I will tell you all that I know and experienced with it. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Hi Tina, welcome to the list! If you search further back in the archive, you will find a very detailled description of the NPD procedure from Kauffman. In a nutshell it's a non-invasive test where your child has to sit quietly for half an hour while several fluids are flushed into the nose and the reaction of the nasal epithelial cells is measured. Also google for Nasal Potential Difference to find better explanations. Personally I would ask straight for the Ambry test (www.ambrygen.com). They test for 1,000 different CF mutations there. Your dx strory so far is dramatic and it's sad to read what Collin had to go through in his life already. But at least you have had great docs, who were willing to treat as needed, even without a sure dx. Peace Torsten, dad of Fiona 5wcf e-mail: torstenkrafft@... Question > I was looking through the archives and found a message from, I think, > Barbara w/ daughter Kristy who had a NPD test to test for mild CF. Am I > right about this? What is it? > > -Tina, mom to Collin 6 w/possible CF and Kelli 8wocf > > > > > > > > Tina Crooke > Recreation Bookkeeper > City of Rockville > 111 land Ave > Rockville, MD 20850 > > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Hi Tina, welcome to the list! If you search further back in the archive, you will find a very detailled description of the NPD procedure from Kauffman. In a nutshell it's a non-invasive test where your child has to sit quietly for half an hour while several fluids are flushed into the nose and the reaction of the nasal epithelial cells is measured. Also google for Nasal Potential Difference to find better explanations. Personally I would ask straight for the Ambry test (www.ambrygen.com). They test for 1,000 different CF mutations there. Your dx strory so far is dramatic and it's sad to read what Collin had to go through in his life already. But at least you have had great docs, who were willing to treat as needed, even without a sure dx. Peace Torsten, dad of Fiona 5wcf e-mail: torstenkrafft@... Question > I was looking through the archives and found a message from, I think, > Barbara w/ daughter Kristy who had a NPD test to test for mild CF. Am I > right about this? What is it? > > -Tina, mom to Collin 6 w/possible CF and Kelli 8wocf > > > > > > > > Tina Crooke > Recreation Bookkeeper > City of Rockville > 111 land Ave > Rockville, MD 20850 > > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Who do you contact to join? Phone number or web site? Martha H Re: Question > > > > I have the " official " medicalert bracelet. > > The annual membership is $50 a year. I consider this an excellent > > investment and would recommend it to one and all. > > It's $20 a yr. or 50 for 3 yr. > i have my renewal form right in front of me as it is due to be paid. > the jewelry runs from 35 and up. > > sue > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 I have the " official " medicalert bracelet. Not only does the bracelet have words to the effect that a tube can't just be jammed down my throat, but there is a phone number to be called and my medicalert id number. When I registered, I was asked questions about my medical condition as well as what medications I take. The lady who spoke with me on the phone knew exactly what verbiage to put on the bracelet. The annual membership is $50 a year. I consider this an excellent investment and would recommend it to one and all. If I am found on the street, medical information about me can be obtained quickly via a phone call. Medicalert also offers a pendant that you can wear around your neck instead of the bracelet. Good luck Sue > > Hi Everyone, > > I have a question. I want to start wearing a medic alert chain around my neck just in case anything ever happens so that the ER would know that I'm different inside. Any recommendation as to what I can get ingraved on the tag to let them know what I've had done but be brief too? The only thing I really know if is that we can't have NG tubes is there anything else? I had read somewhere that someone had RNY- Don't Tube Blindly...is that sufficient enough to get the point across? > > Any suggestions welcomed... > > Peace and Love > > Effie > > Open RNY 9-18-00 > > 300/175 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 I have the " official " medicalert bracelet. Not only does the bracelet have words to the effect that a tube can't just be jammed down my throat, but there is a phone number to be called and my medicalert id number. When I registered, I was asked questions about my medical condition as well as what medications I take. The lady who spoke with me on the phone knew exactly what verbiage to put on the bracelet. The annual membership is $50 a year. I consider this an excellent investment and would recommend it to one and all. If I am found on the street, medical information about me can be obtained quickly via a phone call. Medicalert also offers a pendant that you can wear around your neck instead of the bracelet. Good luck Sue > > Hi Everyone, > > I have a question. I want to start wearing a medic alert chain around my neck just in case anything ever happens so that the ER would know that I'm different inside. Any recommendation as to what I can get ingraved on the tag to let them know what I've had done but be brief too? The only thing I really know if is that we can't have NG tubes is there anything else? I had read somewhere that someone had RNY- Don't Tube Blindly...is that sufficient enough to get the point across? > > Any suggestions welcomed... > > Peace and Love > > Effie > > Open RNY 9-18-00 > > 300/175 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 > I have the " official " medicalert bracelet. > The annual membership is $50 a year. I consider this an excellent > investment and would recommend it to one and all. It's $20 a yr. or 50 for 3 yr. i have my renewal form right in front of me as it is due to be paid. the jewelry runs from 35 and up. sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 > I have the " official " medicalert bracelet. > The annual membership is $50 a year. I consider this an excellent > investment and would recommend it to one and all. It's $20 a yr. or 50 for 3 yr. i have my renewal form right in front of me as it is due to be paid. the jewelry runs from 35 and up. sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 > I have a question why is it that Dr. A always prescribes Liquid meds? > Can we no longer or ever have regular pills. I am 18 months post > op. However > I have been having pain with my Hernia. > Jan Hi Jan I don't know who Dr. A is but when I have an option for liquid medication or sub-lingual -- I always opt for that when possible -- I'm 2 plus years out but believe I get the full dose of something liquid or sub-lingual and with a pill *shrug* I'm never really sure... maybe that's why.. because he can for that particular medication. We can take pills -- I take pills every day in vitamins, supplements and even antibiotics when needed -- I just prefer liquids when available. hugz, ~denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 > I also got smart and wrote down questions for my doctor this time, because I can't remember anything when I get in there. Question #1 was " why am I doing IV DMPS when I keep hearing all about EDTA and other detox methods " . EDTA does not chelate mercury very well. > He says the other methods are safer and he uses those methods for almost all of his patients. He uses the IV DMPS only for extreme cases of mercury toxicity. Well, that sounds like he realizes that IV DMPS is not so terribly safe. Maybe he'd be interested in giving you low dose ORAL DMPS instead, since it is much safer... Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 > I also got smart and wrote down questions for my doctor this time, because I can't remember anything when I get in there. Question #1 was " why am I doing IV DMPS when I keep hearing all about EDTA and other detox methods " . EDTA does not chelate mercury very well. > He says the other methods are safer and he uses those methods for almost all of his patients. He uses the IV DMPS only for extreme cases of mercury toxicity. Well, that sounds like he realizes that IV DMPS is not so terribly safe. Maybe he'd be interested in giving you low dose ORAL DMPS instead, since it is much safer... Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 > I also got smart and wrote down questions for my doctor this time, because I can't remember anything when I get in there. Question #1 was " why am I doing IV DMPS when I keep hearing all about EDTA and other detox methods " . EDTA does not chelate mercury very well. > He says the other methods are safer and he uses those methods for almost all of his patients. He uses the IV DMPS only for extreme cases of mercury toxicity. Well, that sounds like he realizes that IV DMPS is not so terribly safe. Maybe he'd be interested in giving you low dose ORAL DMPS instead, since it is much safer... Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 Hi Moria! We discussed other routes including the oral doses, but since I can't swallow, pills are out of the question. I'm supposed to have an Upper GI tomorrow for the swallowing problem to rule out a physical cause but he's pretty sure it's the mercury and my mind causing it. We also discussed lower more frequent doses of IV DMPS but that would take longer and he's concerned about this heart murmur that's getting worse. The choice was mine, so I opted to get the mercury out as quickly as possible, and heavy doses once a month is the quickest. I may have made the wrong decision, but if I drop dead from this, that'll be a lesson to you all! LOLOL I also have the option of changing my mind any time I want, and I think once I get my mercury levels at least down to where they can be measured accurately, I might feel like I can slow down a little bit. Right now I'm so far off the scale they can't even get an accurate reading on me. > > He says the other methods are safer and he uses those methods for almost all of his patients. He uses the IV DMPS only for extreme cases of mercury toxicity. Well, that sounds like he realizes that IV DMPS is not so terribly safe. Maybe he'd be interested in giving you low dose ORAL DMPS instead, since it is much safer... Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 I also have the option of changing my mind any time I want, and I think once I get my mercury levels at least down to where they can be measured accurately, I might feel like I can slow down a little bit. Right now I'm so far off the scale they can't even get an accurate reading on me. > well, since I don't believe there is any way to measure mercury levels in people accurately (except maybe tissue analysis, which no one would do on a living person), I'm a little skeptical. But you can always consider my point of view " entertainment " of course. Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 But you make such cute entertainment. LOL What do you mean you can't accurately measure mercury levels? Nobody told me that. How come some fancy lab in Chicago specializes in metal toxicity? huh? > > well, since I don't believe there is any way to measure mercury levels in people accurately (except maybe tissue analysis, which no one would do on a living person), I'm a little skeptical. But you can always consider my point of view " entertainment " of course. Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 > But you make such cute entertainment. LOL What do you mean you can't accurately measure mercury levels? Nobody told me that. How come some fancy lab in Chicago specializes in metal toxicity? huh? > > > > Mercury " hides " . It is not accurately reflected in blood or hair. Please read: http://groups.yahoo.com/group/Autism-Mercury/files/HOW_TO_hair_test Hey! Maybe you could collect ALL of your urine for the entire time (weeks, months, years) that you chelate and then measure all the mercury in the urine, and do some calculations of volume, and figure it out that way. You would still only be measuring the amount that came OUT, and you still would not be able to know if there is any left in the body, but I think at least this is technically possible If the fancy lab in Chicago is worth all that fanciness, then they specilize in metal tox in order to help people figure out if they are toxic or and they do NOT claim to measure the AMOUNT of mercury in a person. At least, as I said, there is no reliable way that I know of to do this [except maybe tissue samples]. best, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 The inability to get a highly accurate measurement is probably one of the reasons so many people and institutions refuse to accept the existence of metal toxicity. Gut feeling (or wishful hoping) tells me they got at least a measurement of too much mercury. That gives me something to cling to in my efforts to recover from whatever has been ailing me for so many years. > Mercury " hides " . It is not accurately reflected in blood or hair. Please read: http://groups.yahoo.com/group/Autism-Mercury/files/HOW_TO_hair_test Hey! Maybe you could collect ALL of your urine for the entire time (weeks, months, years) that you chelate and then measure all the mercury in the urine, and do some calculations of volume, and figure it out that way. You would still only be measuring the amount that came OUT, and you still would not be able to know if there is any left in the body, but I think at least this is technically possible If the fancy lab in Chicago is worth all that fanciness, then they specilize in metal tox in order to help people figure out if they are toxic or and they do NOT claim to measure the AMOUNT of mercury in a person. At least, as I said, there is no reliable way that I know of to do this [except maybe tissue samples]. best, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 > The inability to get a highly accurate measurement is probably one of the reasons so many people and institutions refuse to accept the existence of metal toxicity. Gut feeling (or wishful hoping) tells me they got at least a measurement of too much mercury. That gives me something to cling to in my efforts to recover from whatever has been ailing me for so many years. > I do believe there are some reasonably accurate ways to tell if there is " too much " . The counting rules being one, and a fairly simple one to execute. The part I was quibbling about was measuring " how much " . best, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 > Anybody ever had problems with over-the-counter nasal sprays making yeast problems worse? > It's not over the counter, but I've been injured by Nasonex, a common steroid-based inhalers. I used it briefly over 4 years ago, and beginning then and ever since I've had problems losing my voice in the evenings. One doctor said it seems to have increased the thickness of mucous near my voicebox, triggering the problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 5000 microgram (mcg/µg) = 5 milligram (mg) TK > I must be tired tonight because I can't find this measurement online anywhere. If you're supposed to take 5,000 MCG of garlic ..... exactly how much is that? What does MCG stand for? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 There's part of my problem. I couldn't find mcg listed anywhere but I was seeing that other measurement next to it and had no idea what that was. Thank you :) > 5000 microgram (mcg/µg) = 5 milligram (mg) TK > I must be tired tonight because I can't find this measurement online anywhere. If you're supposed to take 5,000 MCG of garlic ..... exactly how much is that? What does MCG stand for? Quote Link to comment Share on other sites More sharing options...
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