Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 BLESS you & Welcome back!! It is great to hear how well all are doing. I am still hear. I am very busy work wise 7 doing a bunch of traveling in summer time. so am on here as often as I can. I am doing some quick posts as I can too. Love it that your back . LOVE & HUGS, GrandmomBEV New to group Hi everyone, Some of you I recognize, some not. Gram Bev, hi! I have taken a few year break from 'lists' etc. Time does not permit to read all the mail unless I stay up till the wee hours, which I love to do, but pay for in the morning! I could write an essay to introduce myself and my boys, but here's the short version. I have 2 sons. just turned 8 a couple of days ago. He was an invitro fertilization baby, conceived after 5 years of fertility treatment. He was born with meconium ilius and had surgery at 2 days old. He was diagnosed with cf at 2 1/2 months old. He is pretty healthy. He also had surgery at 1 1/2 years for problems with scar tissue from the first surgery. Another surgery at 2 1/2 years for a hydrocele (sort of like a hernia.) Another surgery at 7 years for polyps, which I see have been under discussion lately. His polyps also came back after just 6 months. I like some other parents here, do not wish to partake in surgery again, unless absolutely necessary. is seeing a Homeopathic M.D. at this time, and his polyps have shrunk. We are still working on it. I really like this doctor. My pulmonologist is leary, however trusts my judgement. also had a PICC line at that time of surgery 7yrs old for iv antiboitics at home. Wow was that an ordeal with a 2 year old also. We managed. So, to date the polyps are there, but not causing problems per se. wished and wished for a baby brother. Knowing how difficult it would be to have another baby, we applied for adoption. We had tried invitro 3 more times, and ended up delivering quadruplets at 15 weeks, two boys and two girls. That was devastating. After that, I had trouble having a pap smear. I was mentally and physically distraught. We finally applied for adoption, longing for another child to love and for a brother or sister for ! In 1999, (while I was on the Beatles tour in London nonetheless) Christian was born and his birthmother put him up for adoption! Yeah for us! We brought him into our home at 4 days old. What fun he has brought to our household........always cracking us up! He is 3 years old now and starts preschool tomorrow!!! Tomorrow!!!! started school today. My boys are growing. It is funny...... when everyone is well, things seem so 'normal' so to speak. The daily therapies, washing the nebulizer equipment, doling out pills and vitamins all seem so normal. I am happy. When someone gets ill, the rug is pulled out from under me and I need some heavy-duty antidepressants. Well, that is about all. My husband and I have been married 15 years and we are in Illinois. He travels frequently, which makes me feel like a single parent with a roof over my head. I'm glad to be back to listen and comment here and there, although I may not be able to read all the mail at times. When I was part of the Cystic-L when was 2, it was a lifesaver to know that I was not alone. I like to be able to help with health issues. See you all around. Cheri, Mom to , 8yrs, ivf baby w/cf and Christian, 3yrs, adopted, both gifts from Heaven!!! ------------------------------------------- Introducing NetZero Long Distance Unlimited Long Distance only $29.95/ month! Sign Up Today! www.netzerolongdistance.com 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 27, 2002 Report Share Posted August 27, 2002 I hadn't gained an ounce for the first 2 years. Suddenly, after 2 years, I started gaining the lbs and have now gained 15 in the last 6 Val, was your stomach transsected? I gained weight and had a staple line disruption about 18 months out. Now I am transsected (and transsected part removed) and haven't had any problems. I had gained back about 50 lbs before I got all of the preauth for surgery, etc. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 I hadn't gained an ounce for the first 2 years. Suddenly, after 2 years, I started gaining the lbs and have now gained 15 in the last 6 Val, was your stomach transsected? I gained weight and had a staple line disruption about 18 months out. Now I am transsected (and transsected part removed) and haven't had any problems. I had gained back about 50 lbs before I got all of the preauth for surgery, etc. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 I hadn't gained an ounce for the first 2 years. Suddenly, after 2 years, I started gaining the lbs and have now gained 15 in the last 6 Val, was your stomach transsected? I gained weight and had a staple line disruption about 18 months out. Now I am transsected (and transsected part removed) and haven't had any problems. I had gained back about 50 lbs before I got all of the preauth for surgery, etc. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Val, I also gained when I hit the 2 year mark. I think it's very common. From what I've learned and experienced myself, at some point we tend to " relax " our eating patterns - carbs and sugars sneak back in and in general, we're eating more and less carefully than we did at the beginning. I struggle all the time now, but am determined to fight back and lose what I gained. But it's hard. The best way seems to be to go back to earlier eating patterns. I didn't have one taste of sugar or liquor for my whole first year, and very few carbs. I'm trying to start eating high protein, very low carb foods and absolutely no sugar or liquor of any kind. It's hard, but I believe if I keep it up, I will get back to where I was..... Helene RNY 12/22/99 350/170 (up from 150) cactusval wrote: > Hi, > > My name is Val. I live in the Boston area. I had open RNY June 28 or > 2000. > > I hadn't gained an ounce for the first 2 years. Suddenly, after 2 > years, I started gaining the lbs and have now gained 15 in the last 6 > weeks. > > Can anyone relate to this and if so, what did you do? > > How many people keep it off after surgery? > > I'm scared and despressed. > > Thanks, > Val > > 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 August 27, 2002 Report Share Posted August 27, 2002 Val, I also gained when I hit the 2 year mark. I think it's very common. From what I've learned and experienced myself, at some point we tend to " relax " our eating patterns - carbs and sugars sneak back in and in general, we're eating more and less carefully than we did at the beginning. I struggle all the time now, but am determined to fight back and lose what I gained. But it's hard. The best way seems to be to go back to earlier eating patterns. I didn't have one taste of sugar or liquor for my whole first year, and very few carbs. I'm trying to start eating high protein, very low carb foods and absolutely no sugar or liquor of any kind. It's hard, but I believe if I keep it up, I will get back to where I was..... Helene RNY 12/22/99 350/170 (up from 150) cactusval wrote: > Hi, > > My name is Val. I live in the Boston area. I had open RNY June 28 or > 2000. > > I hadn't gained an ounce for the first 2 years. Suddenly, after 2 > years, I started gaining the lbs and have now gained 15 in the last 6 > weeks. > > Can anyone relate to this and if so, what did you do? > > How many people keep it off after surgery? > > I'm scared and despressed. > > Thanks, > Val > > 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 August 27, 2002 Report Share Posted August 27, 2002 Val, I also gained when I hit the 2 year mark. I think it's very common. From what I've learned and experienced myself, at some point we tend to " relax " our eating patterns - carbs and sugars sneak back in and in general, we're eating more and less carefully than we did at the beginning. I struggle all the time now, but am determined to fight back and lose what I gained. But it's hard. The best way seems to be to go back to earlier eating patterns. I didn't have one taste of sugar or liquor for my whole first year, and very few carbs. I'm trying to start eating high protein, very low carb foods and absolutely no sugar or liquor of any kind. It's hard, but I believe if I keep it up, I will get back to where I was..... Helene RNY 12/22/99 350/170 (up from 150) cactusval wrote: > Hi, > > My name is Val. I live in the Boston area. I had open RNY June 28 or > 2000. > > I hadn't gained an ounce for the first 2 years. Suddenly, after 2 > years, I started gaining the lbs and have now gained 15 in the last 6 > weeks. > > Can anyone relate to this and if so, what did you do? > > How many people keep it off after surgery? > > I'm scared and despressed. > > Thanks, > Val > > 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 August 27, 2002 Report Share Posted August 27, 2002 I agree with returning to what worked during the first year post-op. I lost 108 pounds in 9 months and completely stopped losing after that. I also have not gained an ounce back and that makes me VERY happy. I am now 16 months post-op and need to lost another 70 (give or take a few). I am not obsessed with a number on the scale but became frustrated with this long plateau since I know I still need to lose some. Returning to protein, protein, protein has made me feel better. I had way too many carbs in my daily diet, which I must admit I didn't even notice creeping into my diet until I started writing it all down. Exercise has also been helpful. I now walk vigorously 30 to 45 minutes each day on my treadmill. The surgeon operated on my body but not my brain. Some of my old thinking is still lurking in the gray matter. Thank you all for the posts during the past month or so I've been reading. It's great to know you're all out there! RNY 4/11/2001 (100 cm distal) 108 gone for good, > >To: cactusval cactusval@...> >CC: Graduate-OSSG >Subject: Re: New to Group >Date: Tue, 27 Aug 2002 13:20:47 -0400 > >Val, >I also gained when I hit the 2 year mark. I think it's very common. From >what I've learned and experienced myself, at some point we tend to " relax " >our eating patterns - carbs and sugars sneak back in and in general, we're >eating more and less carefully than we did at the beginning. I struggle >all >the time now, but am determined to fight back and lose what I gained. But >it's hard. The best way seems to be to go back to earlier eating patterns. >I didn't have one taste of sugar or liquor for my whole first year, and >very >few carbs. I'm trying to start eating high protein, very low carb foods >and >absolutely no sugar or liquor of any kind. It's hard, but I believe if I >keep it up, I will get back to where I was..... > >Helene >RNY 12/22/99 >350/170 (up from 150) > >cactusval wrote: > > > Hi, > > > > My name is Val. I live in the Boston area. I had open RNY June 28 or > > 2000. > > > > I hadn't gained an ounce for the first 2 years. Suddenly, after 2 > > years, I started gaining the lbs and have now gained 15 in the last 6 > > weeks. > > > > Can anyone relate to this and if so, what did you do? > > > > How many people keep it off after surgery? > > > > I'm scared and despressed. > > > > Thanks, > > Val > > > > 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 15, 2002 Report Share Posted September 15, 2002 Hi !!!! and welcome!!! Just to give heads up, my son, Jaycen was concieved through ivf. Ivf doesn t weed out any problems. Jaycen has cf, right-sided hemihypertrophy, possible beckwith-wiedemann syndrome, calcium deposits on his left kidney. Jaycen will be 7 months on the 16. He is currently taking cotazym #4..full capsule, adek vitamins,rantitdine(zantac). We just finished kephlax(antibiotic) as he doesn't need it anymore. -- new to group hi everyone. I have just joined and am a mum of baby Liam 2 weeks old diagnosed with CF. We had a baby girl die at 8 days old with CF from the complications of surgery. Liam was a bit of a opps, but he is going to be a great blessing as well. We were planning to do the whole IVF genitic cycle to avoid CF, now we have a new challenege in front of us. Hopefully later we can do this IVF but for now we have to get over the shock and destation and start learning about CF and how to look after Liam as best as we can. We are both very interested in alterative medicine combining it along aside conventional meds. Liam has started on enzymes and has put on some weight which is great. I am breast feeding and am taking extra Vit E and halibut oil for A to help him. I also massage him with wheatgerm oil for Vit E after a bath. Any suggestions I would love to hear. I guess putting in the sunlight for the Vit D would be good too. Look forward to talking and meeting you all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 , Welcome to the group, you have chosen a great site, these are the most knowledgible people I think I have ever had the honor of knowing, my e-mail is earth_angel_1968@..., feel free to e-mail me anytime you would like. Shelli (Iowa) mother of 2 Mandy (13 w/cf) and Cyle (11 wo/cf) monii100 wrote:hi everyone. I have just joined and am a mum of baby Liam 2 weeks old diagnosed with CF. We had a baby girl die at 8 days old with CF from the complications of surgery. Liam was a bit of a opps, but he is going to be a great blessing as well. We were planning to do the whole IVF genitic cycle to avoid CF, now we have a new challenege in front of us. Hopefully later we can do this IVF but for now we have to get over the shock and destation and start learning about CF and how to look after Liam as best as we can. We are both very interested in alterative medicine combining it along aside conventional meds. Liam has started on enzymes and has put on some weight which is great. I am breast feeding and am taking extra Vit E and halibut oil for A to help him. I also massage him with wheatgerm oil for Vit E after a bath. Any suggestions I would love to hear. I guess putting in the sunlight for the Vit D would be good too. Look forward to talking and meeting you all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 , Welcome to the group, you have chosen a great site, these are the most knowledgible people I think I have ever had the honor of knowing, my e-mail is earth_angel_1968@..., feel free to e-mail me anytime you would like. Shelli (Iowa) mother of 2 Mandy (13 w/cf) and Cyle (11 wo/cf) monii100 wrote:hi everyone. I have just joined and am a mum of baby Liam 2 weeks old diagnosed with CF. We had a baby girl die at 8 days old with CF from the complications of surgery. Liam was a bit of a opps, but he is going to be a great blessing as well. We were planning to do the whole IVF genitic cycle to avoid CF, now we have a new challenege in front of us. Hopefully later we can do this IVF but for now we have to get over the shock and destation and start learning about CF and how to look after Liam as best as we can. We are both very interested in alterative medicine combining it along aside conventional meds. Liam has started on enzymes and has put on some weight which is great. I am breast feeding and am taking extra Vit E and halibut oil for A to help him. I also massage him with wheatgerm oil for Vit E after a bath. Any suggestions I would love to hear. I guess putting in the sunlight for the Vit D would be good too. Look forward to talking and meeting you all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 , Welcome to the group. Everyone here is so awesome. A great group to sign up to for alternative methods is Sharktank. Cheryl mom to Jake (2 1/2 wcf) in Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 it is called genitic preimplantation procedure, it costs about $10,000. If they know the genes to look for in the embryo, for us its delta f508 they screen them as 3 day old embryos and implant only healthy ones back into the woman new to group hi everyone. I have just joined and am a mum of baby Liam 2 weeks old diagnosed with CF. We had a baby girl die at 8 days old with CF from the complications of surgery. Liam was a bit of a opps, but he is going to be a great blessing as well. We were planning to do the whole IVF genitic cycle to avoid CF, now we have a new challenege in front of us. Hopefully later we can do this IVF but for now we have to get over the shock and destation and start learning about CF and how to look after Liam as best as we can. We are both very interested in alterative medicine combining it along aside conventional meds. Liam has started on enzymes and has put on some weight which is great. I am breast feeding and am taking extra Vit E and halibut oil for A to help him. I also massage him with wheatgerm oil for Vit E after a bath. Any suggestions I would love to hear. I guess putting in the sunlight for the Vit D would be good too. Look forward to talking and meeting you all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 KELL FAMILY, WE ALSO USED PID (pre-implantation diagnosis) SO THAT WE WOULDN'T HAVE A 3RD CHILD, WITH CF (we have 1 with and 1 without). IT COST ALOT BUT ALSO THE TIME INVOLVED WAS THE WORST BIT FOR US. EVERYTHING HAS TO BE TIMED EXACTLY SO YOU HAVE TO FIT AROUND THE CLOCK NOT AROUND YOUR FAMILY. AFTER SPENDING THOUSANDS, WE HAD 6 FERTILISED. 3 HAD CF, 2 WERE CARRIERS AND 1 WAS UNDETERMINED. WE DECIDED TO USE THE 2 CARRIERS, BUT BOTH DIDN'T SURVIVE THE DEFROSTING. SO AFTER ALL THAT $ WE ENDED UP WITH NOTHING. WE DIDN'T TRY AGAIN AFTER THAT. SO REGRETABLY I THINK OUR FAMILY WILL ONLY HAVE THE TWO PRECIOUS CHILDREN WE HAVE NOW. BEST OF LUCK WITH IT. JULIE(Australia) Mummy to Liam 8 wocf & Eilish 5wcf Re: new to group it is called genitic preimplantation procedure, it costs about $10,000. If they know the genes to look for in the embryo, for us its delta f508 they screen them as 3 day old embryos and implant only healthy ones back into the woman new to group hi everyone. I have just joined and am a mum of baby Liam 2 weeks old diagnosed with CF. We had a baby girl die at 8 days old with CF from the complications of surgery. Liam was a bit of a opps, but he is going to be a great blessing as well. We were planning to do the whole IVF genitic cycle to avoid CF, now we have a new challenege in front of us. Hopefully later we can do this IVF but for now we have to get over the shock and destation and start learning about CF and how to look after Liam as best as we can. We are both very interested in alterative medicine combining it along aside conventional meds. Liam has started on enzymes and has put on some weight which is great. I am breast feeding and am taking extra Vit E and halibut oil for A to help him. I also massage him with wheatgerm oil for Vit E after a bath. Any suggestions I would love to hear. I guess putting in the sunlight for the Vit D would be good too. Look forward to talking and meeting you all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Is this the O'Neill that plays table tennis? new to group hi everyone. I have just joined and am a mum of baby Liam 2 weeks old diagnosed with CF. We had a baby girl die at 8 days old with CF from the complications of surgery. Liam was a bit of a opps, but he is going to be a great blessing as well. We were planning to do the whole IVF genitic cycle to avoid CF, now we have a new challenege in front of us. Hopefully later we can do this IVF but for now we have to get over the shock and destation and start learning about CF and how to look after Liam as best as we can. We are both very interested in alterative medicine combining it along aside conventional meds. Liam has started on enzymes and has put on some weight which is great. I am breast feeding and am taking extra Vit E and halibut oil for A to help him. I also massage him with wheatgerm oil for Vit E after a bath. Any suggestions I would love to hear. I guess putting in the sunlight for the Vit D would be good too. Look forward to talking and meeting you all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 no sorry!! new to group hi everyone. I have just joined and am a mum of baby Liam 2 weeks old diagnosed with CF. We had a baby girl die at 8 days old with CF from the complications of surgery. Liam was a bit of a opps, but he is going to be a great blessing as well. We were planning to do the whole IVF genitic cycle to avoid CF, now we have a new challenege in front of us. Hopefully later we can do this IVF but for now we have to get over the shock and destation and start learning about CF and how to look after Liam as best as we can. We are both very interested in alterative medicine combining it along aside conventional meds. Liam has started on enzymes and has put on some weight which is great. I am breast feeding and am taking extra Vit E and halibut oil for A to help him. I also massage him with wheatgerm oil for Vit E after a bath. Any suggestions I would love to hear. I guess putting in the sunlight for the Vit D would be good too. Look forward to talking and meeting you all Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Hi Heidi!!! Welcome to the group!!! My name is Alyssa and I am a stay at home to 2 wonderful kids. My son who just turned 4 is anaphylactic to peanuts and tree nuts. He has eczema and milk and soy irritate his eczema. We were told that he was allergic to them, so we stopped it all. Well, we went to the allergist and he didn't have a reaction to milk or soy. I gave him some milk this week and he had a bad case of eczema, so we are going to be limiting his intake. I look forward to chatting with you! I also have a 1 1/2 year old little girl who has no allergies! :-) Alyssa new to group Hi, all,I just joined, hope to have some fun. I have a celiac son (intolerant of gluten - wheat, oats, barley, rye), and since it went undetected for so long, his intestinal wall was damaged and he developed allergies to dairy and corn. We have his diet completely down pat, he is wonderful about it, but this whole halloween thing should be interesting. I've explained that I'll need to switch out all his candy, and he seems completely fine with it. As long as he can be a blue Power Ranger, he's happy! This child eats to live, doesn't live to eat - how lucky he is!I look forward to being a member here, and to hearing how your kids do at school. His preschool is great, but I am already nervous about kindergarten.HeidiMommy to Cal, 5, stomach of steel, and Jake, 3, celiac, dairy, corn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Lori, You may have been told this before, but it always bears repeating. Just keep doing what you have been doing to lose the weight. This isn't a race, but if you keep on going, you will get there :-) Hang tough. For me, I didn't put my weight on overnight and I sure didn't get to lose it overnight. I never kept track of my weight, like some wls patients do. I do know...that often...when we are not losing pounds, we are losing inches. It does pay off to measure now and again. Measure everything. Right down to the wrists, ankles, calves, etc. Best Wishes, > > Hi. My name is Lori. I was diagnosed with Congestive Heart Failure > in May 2001 weighing 479 lbs. I had surgery on July 16, 2001 and > weighed 401. I know weigh about 302. I plateaued about 5 or 6 > months ago and am totally frustrated. I am eternally grateful that I > have lost the weight I have. However, I am only about half way to > where I would like to be, desire to be, need to be. Was told this > was a good group for those that have more then a year post op. > > Lori Owen > Barb B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Lori, You may have been told this before, but it always bears repeating. Just keep doing what you have been doing to lose the weight. This isn't a race, but if you keep on going, you will get there :-) Hang tough. For me, I didn't put my weight on overnight and I sure didn't get to lose it overnight. I never kept track of my weight, like some wls patients do. I do know...that often...when we are not losing pounds, we are losing inches. It does pay off to measure now and again. Measure everything. Right down to the wrists, ankles, calves, etc. Best Wishes, > > Hi. My name is Lori. I was diagnosed with Congestive Heart Failure > in May 2001 weighing 479 lbs. I had surgery on July 16, 2001 and > weighed 401. I know weigh about 302. I plateaued about 5 or 6 > months ago and am totally frustrated. I am eternally grateful that I > have lost the weight I have. However, I am only about half way to > where I would like to be, desire to be, need to be. Was told this > was a good group for those that have more then a year post op. > > Lori Owen > Barb B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Lori, You may have been told this before, but it always bears repeating. Just keep doing what you have been doing to lose the weight. This isn't a race, but if you keep on going, you will get there :-) Hang tough. For me, I didn't put my weight on overnight and I sure didn't get to lose it overnight. I never kept track of my weight, like some wls patients do. I do know...that often...when we are not losing pounds, we are losing inches. It does pay off to measure now and again. Measure everything. Right down to the wrists, ankles, calves, etc. Best Wishes, > > Hi. My name is Lori. I was diagnosed with Congestive Heart Failure > in May 2001 weighing 479 lbs. I had surgery on July 16, 2001 and > weighed 401. I know weigh about 302. I plateaued about 5 or 6 > months ago and am totally frustrated. I am eternally grateful that I > have lost the weight I have. However, I am only about half way to > where I would like to be, desire to be, need to be. Was told this > was a good group for those that have more then a year post op. > > Lori Owen > Barb B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 Hi Ali, Sorry you are having such a hard time. Your doctor does not know what he is doing or he would never have given you a challenge test while you still have amalgams in your mouth. This will only make you much sicker possibly even permanently by redistributing mercury. You also can not chelate until you remove all the amalgam fillings. I strongly suggest you order Andy Cutler's book and read it before you do anything else. Go to the Autism-Mercury site and read all the information there before proceeding with anything else. http://groups.yahoo.com/group/Autism-Mercury/ Also read the FAQ here in the links section ASAP. http://groups.yahoo.com/group/Autism-Mercury/files/Mercury-Autism% 20FAQ TK > Hello. I'm new to this group. Not really sure where to start. > > I've been diagnosed with having heavy metal toxicity through a urine toxic metal test. Mercury was off the chart, but I also have toxicity for arsenic, bismuth, cadmium, lead, thallium, tin, tungsten, and creatinine. > > I have significant health issues aside from heavy metal toxicity, such as candidias, pituitary tumor, migraines, galactorrhhea, hypothyroid, allergies to molds-grasses-trees-weeds-dusts-etc, unspecified d/o of adrenal gland disorder, fibromyalgia, asthma, amenorrhea, endocrine disorder, hormone deficiencies, bacterial imbalances in the GI tract, compromised immune system ...okay, I'm tired. That's enough for now. There's too much there already. > > The huge problem that even brought about the testing was the compromised immune system and candidias. I have had the candidias since 1997 with no clearing up of it. It's gotten worse rather than better. I've never been able to go off the medication or diet without the candidias flaring up-getting worse. It is taking me longer to recoup from illnesses such as the common cold. Even worse to recoup from are things such as bronchitis or anything that requires an antibiotic. > > Migraines are horrible even though I am not having them 24/7 anymore, but I'm on a good dose of meds. However, I shouldn't be having them with what I'm on and so it's at the best it can be. > > I'm tired, though. I have to push to get through the days. At this point I have seen a specialist and will be starting chelation as soon as the medication comes in. I can't do the DMSA or the DMPS b/c it will be too taxing on my body. When I did the provocative test over the course of three days I was deathly ill on the medication and was thrown into a constant migraine. I remained very ill for two weeks after. I wasn't even taking in the amount of medication that would be given in one day on the protocol. So the doctor has decided on NDF. If I can tolerate this, then this is what we'll try. I also have to see a specialist to consult on amalgam removal. Since I have such chemical sensitivity, I'm told that they will have to find a replacement material that I'm not allergic to. They'll also have to build up my body to handle any removal and do this slowly since my system is weak. > > I'm being tested for food sensitivities to be sure I'm not eating anything on my limited as is diet that would not be good for me. > > I am fortunate in that I have a good team of doctors who work together and there is a blend of eastern and western medicine. I see a chiropractor and massage therapist weekly and an acupuncturist every three weeks. I have eleven doctors all together-- one general practitioner and the rests are specialists. > > Right now I do feel overwhelmed, though, with the thought of chelation. I guess it's b/c I don't know what to expect. I have read some. To be honest, a lot of what I read scares me. I've been through so much physically and yes, I have tolerance, stamina, and conviction. But I've been taxed physically, emotionally, spiritually these past two years trying to get the migraines under control. It's been 12 years that I have had the candidias. My life is " doctor appointments " and pills and a special diet and basically tolerating not feeling well on a daily basis while working and trying to live a quality life. The thought of " one more thing " is just mind boggling right now. I know I will handle it. I'll adjust and make it fit. Emotionally right now I'm frazzled. I think I need time to make sense of all this. > Thanks for listening, > Ali > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 Hi Ali - I can relate somewhat with you. I also have hashimotos (autoimmune thyroid disease), Fibromyalgia, adrenal insufficiency, and all the attendant problems (allergies, chemical sensitivities, hypglycemia, etc. etc.) but manage to function fairly well. I also have a bad back from an accident. I feel a lot better since my thyroid has been treated and I'm self treating my adrenals. I had a lot of amalgam and it has been out a couple of years, but I haven't chelated much cause I was too ill and then my thyroid problems finally showed up after I was pregnant and lost the baby. I was putting on weight for no apparent reason (couldn't have been the sugar I was craving : ) but have lost it since taking thyroid meds. I'm sure I also have candida issues. I can't handle sugar at all anymore. My main problem is my insomnia which I've written in about before. I intend to myself, and if I were you would start looking at a general slow detox if I were you. I have the book The Liver Cleansing Diet by a Dr. Cabot and intend to do that. Its a gentle way to cleanse the liver which makes a huge difference. How are your eliminative organs working? (Colon, kidneys) Are you overweight? I use to be a health nut. Actually am and have been one for over 20 years, but the mercury messed me up. There are a lot of ways to detox and it sounds like what you desperately need. Personally I'm not gonna start chelating till I do that and feel strong enough to. Right now I have a mild flu which is helping do it for me (throws you into a detox) cause I ate horribly for about 4 days during Christmas. I use to do liquid cleanses on a regular basis and know I couldnt' tolerate that right now, but even eating raw fruits and veggies only once a week could help. I'm on a list that advocates a mainly raw diet and have the book the PH Miracle which also advocates mainly raw foods for healing. Puts you in a mild cleansing state and regulates your PH. Most of us are overly acidic from how we eat these days. We need a lot more alkaline foods than we generally eat. Anyway - a few things to consider. Jeanie new to group Hello. I'm new to this group. Not really sure where to start. I've been diagnosed with having heavy metal toxicity through a urine toxic metal test. Mercury was off the chart, but I also have toxicity for arsenic, bismuth, cadmium, lead, thallium, tin, tungsten, and creatinine. I have significant health issues aside from heavy metal toxicity, such as candidias, pituitary tumor, migraines, galactorrhhea, hypothyroid, allergies to molds-grasses-trees-weeds-dusts-etc, unspecified d/o of adrenal gland disorder, fibromyalgia, asthma, amenorrhea, endocrine disorder, hormone deficiencies, bacterial imbalances in the GI tract, compromised immune system ...okay, I'm tired. That's enough for now. There's too much there already. The huge problem that even brought about the testing was the compromised immune system and candidias. I have had the candidias since 1997 with no clearing up of it. It's gotten worse rather than better. I've never been able to go off the medication or diet without the candidias flaring up-getting worse. It is taking me longer to recoup from illnesses such as the common cold. Even worse to recoup from are things such as bronchitis or anything that requires an antibiotic. Migraines are horrible even though I am not having them 24/7 anymore, but I'm on a good dose of meds. However, I shouldn't be having them with what I'm on and so it's at the best it can be. I'm tired, though. I have to push to get through the days. At this point I have seen a specialist and will be starting chelation as soon as the medication comes in. I can't do the DMSA or the DMPS b/c it will be too taxing on my body. When I did the provocative test over the course of three days I was deathly ill on the medication and was thrown into a constant migraine. I remained very ill for two weeks after. I wasn't even taking in the amount of medication that would be given in one day on the protocol. So the doctor has decided on NDF. If I can tolerate this, then this is what we'll try. I also have to see a specialist to consult on amalgam removal. Since I have such chemical sensitivity, I'm told that they will have to find a replacement material that I'm not allergic to. They'll also have to build up my body to handle any removal and do this slowly since my system is weak. I'm being tested for food sensitivities to be sure I'm not eating anything on my limited as is diet that would not be good for me. I am fortunate in that I have a good team of doctors who work together and there is a blend of eastern and western medicine. I see a chiropractor and massage therapist weekly and an acupuncturist every three weeks. I have eleven doctors all together-- one general practitioner and the rests are specialists. Right now I do feel overwhelmed, though, with the thought of chelation. I guess it's b/c I don't know what to expect. I have read some. To be honest, a lot of what I read scares me. I've been through so much physically and yes, I have tolerance, stamina, and conviction. But I've been taxed physically, emotionally, spiritually these past two years trying to get the migraines under control. It's been 12 years that I have had the candidias. My life is " doctor appointments " and pills and a special diet and basically tolerating not feeling well on a daily basis while working and trying to live a quality life. The thought of " one more thing " is just mind boggling right now. I know I will handle it. I'll adjust and make it fit. Emotionally right now I'm frazzled. I think I need time to make sense of all this. Thanks for listening, Ali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 I had this done, too (challenge test). I only had a little left, but this guy (an MD) even said it would be ok to start chelating even with a filling left and some metal caps. I started researching and found Andy's book not long after and realized this guys whole protocol was dangerous. I told him what I thought and he was insulted and dropped me but is no longer practicing where he was. Don't know what happened. I heard he had problems which isn't surprising. Jeanie Re: new to group Hi Ali, Sorry you are having such a hard time. Your doctor does not know what he is doing or he would never have given you a challenge test while you still have amalgams in your mouth. This will only make you much sicker possibly even permanently by redistributing mercury. You also can not chelate until you remove all the amalgam fillings. I strongly suggest you order Andy Cutler's book and read it before you do anything else. Go to the Autism-Mercury site and read all the information there before proceeding with anything else. http://groups.yahoo.com/group/Autism-Mercury/ Also read the FAQ here in the links section ASAP. http://groups.yahoo.com/group/Autism-Mercury/files/Mercury-Autism% 20FAQ TK > Hello. I'm new to this group. Not really sure where to start. > > I've been diagnosed with having heavy metal toxicity through a urine toxic metal test. Mercury was off the chart, but I also have toxicity for arsenic, bismuth, cadmium, lead, thallium, tin, tungsten, and creatinine. > > I have significant health issues aside from heavy metal toxicity, such as candidias, pituitary tumor, migraines, galactorrhhea, hypothyroid, allergies to molds-grasses-trees-weeds-dusts-etc, unspecified d/o of adrenal gland disorder, fibromyalgia, asthma, amenorrhea, endocrine disorder, hormone deficiencies, bacterial imbalances in the GI tract, compromised immune system ...okay, I'm tired. That's enough for now. There's too much there already. > > The huge problem that even brought about the testing was the compromised immune system and candidias. I have had the candidias since 1997 with no clearing up of it. It's gotten worse rather than better. I've never been able to go off the medication or diet without the candidias flaring up-getting worse. It is taking me longer to recoup from illnesses such as the common cold. Even worse to recoup from are things such as bronchitis or anything that requires an antibiotic. > > Migraines are horrible even though I am not having them 24/7 anymore, but I'm on a good dose of meds. However, I shouldn't be having them with what I'm on and so it's at the best it can be. > > I'm tired, though. I have to push to get through the days. At this point I have seen a specialist and will be starting chelation as soon as the medication comes in. I can't do the DMSA or the DMPS b/c it will be too taxing on my body. When I did the provocative test over the course of three days I was deathly ill on the medication and was thrown into a constant migraine. I remained very ill for two weeks after. I wasn't even taking in the amount of medication that would be given in one day on the protocol. So the doctor has decided on NDF. If I can tolerate this, then this is what we'll try. I also have to see a specialist to consult on amalgam removal. Since I have such chemical sensitivity, I'm told that they will have to find a replacement material that I'm not allergic to. They'll also have to build up my body to handle any removal and do this slowly since my system is weak. > > I'm being tested for food sensitivities to be sure I'm not eating anything on my limited as is diet that would not be good for me. > > I am fortunate in that I have a good team of doctors who work together and there is a blend of eastern and western medicine. I see a chiropractor and massage therapist weekly and an acupuncturist every three weeks. I have eleven doctors all together-- one general practitioner and the rests are specialists. > > Right now I do feel overwhelmed, though, with the thought of chelation. I guess it's b/c I don't know what to expect. I have read some. To be honest, a lot of what I read scares me. I've been through so much physically and yes, I have tolerance, stamina, and conviction. But I've been taxed physically, emotionally, spiritually these past two years trying to get the migraines under control. It's been 12 years that I have had the candidias. My life is " doctor appointments " and pills and a special diet and basically tolerating not feeling well on a daily basis while working and trying to live a quality life. The thought of " one more thing " is just mind boggling right now. I know I will handle it. I'll adjust and make it fit. Emotionally right now I'm frazzled. I think I need time to make sense of all this. > Thanks for listening, > Ali > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 I'm sure my regular doctor had no idea that a challenge test should not have been given while amalgams were still present. I have to give him credit that he even thought that heavy metal toxins were even an issue. A lot of my symptoms don't fall into nice neat little packages and cannot be accounted for in test results. He's not treating me for the heavy metal toxins. He got the test results back and said to make an appointment with a specialist in the field. I haven't started any chelation. The specialist wants me to see a dentist to remove the amalgams. He gave me the name of one who is close to where I live who specializes in this. I already have an appointment set up. I saw the heavy metal toxin speciliast last Friday. He gave me a physical and went through all my medical records, which I brought and went through a long form I went through as well as interviewed me. He went through why I'm laden with toxins. He then went through a list of what needs to happen. The removal of the amalgams is an issue. Finding a replacement material is going to be tricky since I'm so chemical sensitive. I already have an appointment on the 6th. I already have had the food sensitivity blood test as well. Not that I can eat a heck of a lot of foods as is. I'm so restricted b/c of the candidias. I'm on a lot of supplements now and have been for quite some time. I'm supposed to meet back with him at the end of the month. In the meantime, he's coordinating with my doctors and he'll be sending me information on chelation. I have ordered Andy's book though. I'm just feeling overwhelmed. I think what I'm worried about the most is getting worse. Everything I've seen and read so far says that is what will happen before you get better. Maybe it won't be as bad as I think. Ali > > Hi Ali, > Sorry you are having such a hard time. Your doctor does not know > what he is doing or he would never have given you a challenge test > while you still have amalgams in your mouth. This will only make you > much sicker possibly even permanently by redistributing mercury. You > also can not chelate until you remove all the amalgam fillings. I > strongly suggest you order Andy Cutler's book and read it before you > do anything else. Go to the Autism-Mercury site and read all the > information there before proceeding with anything else. > http://groups.yahoo.com/group/Autism-Mercury/ > > Also read the FAQ here in the links section ASAP. > > http://groups.yahoo.com/group/Autism-Mercury/files/Mercury-Autism% > 20FAQ > > > > TK > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 No, I'm not overweight. I'm thin. It's hard to be overweight when you are on a strict candidias diet. No sugar, no yeast, no starches, no bread, blah, blah, blah... there are only five fruits I can have. There is nothing processed I can have b/c there is inevitatably sugar in it. No white flour products. I don't eat junk food b/c of course that all has sugar in it. I eat very healthy. My kidneys are fine. Constipation has been a problem though. I'm on a Cellulose Powder for that. My thyroid is regulated correctly. I'm on medication for that. The candidias has done damage to my organs though. My GI tract for one. There is not enough acid in my stomach. Keeping the candidias in check/under control is difficult. But from what I understand the mercury feeds candida and that is why it hasn't been able to eradicate itself from my system with treatment. I had insomnia for years. Once I went on medication for the migraines, that stopped. I sleep very well now. My thoughts don't " race. " That was a problem with why I never slept well. It's been like peeling an onion. You take off one layer only to deal with another. There are so many layers to work with and there are already so many peices to the puzzle. It's a wonder I can keep everything straight. One thing I have always insisted is that I get a copy of all tests and all reports. It is my body afterall. Ali > Hi Ali - I can relate somewhat with you. I also have hashimotos > (autoimmune thyroid disease), Fibromyalgia, adrenal insufficiency, and all > the attendant problems (allergies, chemical sensitivities, hypglycemia, etc. > etc.) but manage to function fairly well. I also have a bad back from an > accident. I feel a lot better since my thyroid has been treated and I'm > self treating my adrenals. I had a lot of amalgam and it has been out a > couple of years, but I haven't chelated much cause I was too ill and then my > thyroid problems finally showed up after I was pregnant and lost the baby. > I was putting on weight for no apparent reason (couldn't have been the sugar > I was craving : ) but have lost it since taking thyroid meds. I'm sure I > also have candida issues. I can't handle sugar at all anymore. My main > problem is my insomnia which I've written in about before. I intend to > myself, and if I were you would start looking at a general slow detox if I > were you. I have the book The Liver Cleansing Diet by a Dr. Cabot and > intend to do that. Its a gentle way to cleanse the liver which makes a huge > difference. How are your eliminative organs working? (Colon, kidneys) Are > you overweight? I use to be a health nut. Actually am and have been one > for over 20 years, but the mercury messed me up. There are a lot of ways to > detox and it sounds like what you desperately need. Personally I'm not > gonna start chelating till I do that and feel strong enough to. Right now I > have a mild flu which is helping do it for me (throws you into a detox) > cause I ate horribly for about 4 days during Christmas. I use to do liquid > cleanses on a regular basis and know I couldnt' tolerate that right now, but > even eating raw fruits and veggies only once a week could help. I'm on a > list that advocates a mainly raw diet and have the book the PH Miracle which > also advocates mainly raw foods for healing. Puts you in a mild cleansing > state and regulates your PH. Most of us are overly acidic from how we eat > these days. We need a lot more alkaline foods than we generally eat. > Anyway - a few things to consider. Jeanie Quote Link to comment Share on other sites More sharing options...
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