Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 > > > > From: shepard richard <yenko_stinger65> > > Subject: Re:New to Group > > Hepatitis Csupportgr oupgroups (DOT) com > > Date: Friday, July 11, 2008, 5:02 PM > > > > > > > > > > > > > > You not alone. I work through treatment and all , then last year > > it got so bad had to cut back on my hours from 8 till 6 a day. > > Company was fine with that then in December got my call and had a > > transplant. Company had gone through a buy out with new owners . > > So only took a little over a month off after the operation and > > have been working half days (against doc's orders),but doing a > > full days work since . On Monday went it and was told no longer > > needed after 20 day short of 19 years. > > Luckily My side business picked up this week also, not enough to > > pay bills but will get by. As severance they did say they would > > pay for my cobra insurance for 18 months time will tell. > > > > rich > > www.rslaserkits. com > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Bob, YOu made me laugh (Bush Dynasty) ---((hugs) Yeah your right I was typing to fast it was 1a/1b that I have and my little guy 3 years old has 1a. So far we keep going back to the gi doc he says come back next year. Taps his belly and that is it... But this kid only had 1 antibiotic in the 3 years of his life and I have not given this child any TYLENOL-- horrible for the liver. He gets his Vit C-- Hey does anyeone know if Milk thistle ok for little ones? I am doing a big check on the CS but there are 500 brands anyone know an ok brand?? Hugs to all, Re: Re:New to Group > > > Hi I think it's a strain or species. I was told 1a is the > hardest to cure. I have never seen it put 1a/b, but that does'nt > mean their is one :-) Wish you all the luck! > > emily_sweethang@... wrote: > Yes I am 1a/b not sure what that is? what is the B part or I > guess I will ask the doc next visit. But I know it is the hardest > to treat or so she said. Of course when I do something bad I do > it all the way!! lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Bob, YOu made me laugh (Bush Dynasty) ---((hugs) Yeah your right I was typing to fast it was 1a/1b that I have and my little guy 3 years old has 1a. So far we keep going back to the gi doc he says come back next year. Taps his belly and that is it... But this kid only had 1 antibiotic in the 3 years of his life and I have not given this child any TYLENOL-- horrible for the liver. He gets his Vit C-- Hey does anyeone know if Milk thistle ok for little ones? I am doing a big check on the CS but there are 500 brands anyone know an ok brand?? Hugs to all, Re: Re:New to Group > > > Hi I think it's a strain or species. I was told 1a is the > hardest to cure. I have never seen it put 1a/b, but that does'nt > mean their is one :-) Wish you all the luck! > > emily_sweethang@... wrote: > Yes I am 1a/b not sure what that is? what is the B part or I > guess I will ask the doc next visit. But I know it is the hardest > to treat or so she said. Of course when I do something bad I do > it all the way!! lol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Cool Deron, We got the same DRAGON!! smile Re:New to Group > > Hepatitis Csupportgr oupgroups (DOT) com > > Date: Friday, July 11, 2008, 5:02 PM > > > > > > > > > > > > > > You not alone. I work through treatment and all , then last year > > it got so bad had to cut back on my hours from 8 till 6 a day. > > Company was fine with that then in December got my call and had a > > transplant. Company had gone through a buy out with new owners . > > So only took a little over a month off after the operation and > > have been working half days (against doc's orders),but doing a > > full days work since . On Monday went it and was told no longer > > needed after 20 day short of 19 years. > > Luckily My side business picked up this week also, not enough to > > pay bills but will get by. As severance they did say they would > > pay for my cobra insurance for 18 months time will tell. > > > > rich > > www.rslaserkits. com > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Cool Deron, We got the same DRAGON!! smile Re:New to Group > > Hepatitis Csupportgr oupgroups (DOT) com > > Date: Friday, July 11, 2008, 5:02 PM > > > > > > > > > > > > > > You not alone. I work through treatment and all , then last year > > it got so bad had to cut back on my hours from 8 till 6 a day. > > Company was fine with that then in December got my call and had a > > transplant. Company had gone through a buy out with new owners . > > So only took a little over a month off after the operation and > > have been working half days (against doc's orders),but doing a > > full days work since . On Monday went it and was told no longer > > needed after 20 day short of 19 years. > > Luckily My side business picked up this week also, not enough to > > pay bills but will get by. As severance they did say they would > > pay for my cobra insurance for 18 months time will tell. > > > > rich > > www.rslaserkits. com > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Glen, That's great news. You're chance of complete clearance just shot up to 85%, just like mine did, once you went undetectable at week 4. Good job!! Deron Re:New to Group > > Hepatitis Csupportgr oupgroups (DOT) com > > Date: Friday, July 11, 2008, 5:02 PM > > > > > > > > > > > > > > You not alone. I work through treatment and all , then last year > > it got so bad had to cut back on my hours from 8 till 6 a day. > > Company was fine with that then in December got my call and had a > > transplant. Company had gone through a buy out with new owners . > > So only took a little over a month off after the operation and > > have been working half days (against doc's orders),but doing a > > full days work since . On Monday went it and was told no longer > > needed after 20 day short of 19 years. > > Luckily My side business picked up this week also, not enough to > > pay bills but will get by. As severance they did say they would > > pay for my cobra insurance for 18 months time will tell. > > > > rich > > www.rslaserkits. com > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Glen, That's great news. You're chance of complete clearance just shot up to 85%, just like mine did, once you went undetectable at week 4. Good job!! Deron Re:New to Group > > Hepatitis Csupportgr oupgroups (DOT) com > > Date: Friday, July 11, 2008, 5:02 PM > > > > > > > > > > > > > > You not alone. I work through treatment and all , then last year > > it got so bad had to cut back on my hours from 8 till 6 a day. > > Company was fine with that then in December got my call and had a > > transplant. Company had gone through a buy out with new owners . > > So only took a little over a month off after the operation and > > have been working half days (against doc's orders),but doing a > > full days work since . On Monday went it and was told no longer > > needed after 20 day short of 19 years. > > Luckily My side business picked up this week also, not enough to > > pay bills but will get by. As severance they did say they would > > pay for my cobra insurance for 18 months time will tell. > > > > rich > > www.rslaserkits. com > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 what's the GI doc say about the MT for little guy? i really don't know. for CS, commercial products that are good are also pricey. there's (or was) lots of testimonials on the Mesosilver site where people claim to have cleared HCV with it, and that's reputed to be one of the better, even best, ones. there's (only) one company that makes USP Rx CSilver for IV drips, called Argentyn 23 i believe, and they sell basically the same thing through retail distribution as Sovereign Silver. looking at the table on http://www.silver-colloids.com/Reports/reports.html it appears the absolute best bang for the buck would be mesosilver. all i've ever used is the bargain basement home brewed, which rates in the table as about the least efficient but also the cheapest by far... seems to work for me, but to really get over the top i guess spending money is unavoidable. maybe i'll buy a bunch of mesosilver and try several months of that if cash flow permits. i am getting bored with fussing with brewing CS although less than $1 per gallon has it's merits. i just arrived at the 4 month point of 1 liter/day, and am considering stopping CS for a couple months, switching over to ozonated water + MMS. a number of folks seem to get good results from MMS and HCV (manage but not clear so far), and i've found it seems to manage symptoms about as well as my CS but the stuff is really pretty foul to ingest, and for myself doesn't get any better as time goes on. so i might just do it for a month or two at which time the chlorine smell will scream " enough " . will do zeolites along with it, which are pretty cool too. no money for waiora NCD (a MLM product) but i have the cheaper competitor from NJersey stuff coming in the mail. by fall maybe i'll have a serious stash of mesosilver on hand to try. MMS is a powerful oxidizer as is ozone and peroxide, so MMS + ozone water aren't incompatible except they destroy your anti-oxidants requiring replenishment. i just finished re-stocking up on herbs and supps ala Buhner's and Zhang's protocols, finally have them all complete (i think; i know i'm broke) and enough for most of a year or so. that stuff does seem to help, but i haven't done it without CS or MMS so i can't judge how effectively... just know i feel better with than without. blah, blah, must get some food together. cheers, bobL > Re: Re:New to Group > > > Bob, > > YOu made me laugh (Bush Dynasty) ---((hugs) > Yeah your right I was typing to fast it was 1a/1b that I have and > my little guy 3 years old has 1a. So far we keep going back to > the gi doc he says come back next year. Taps his belly and that > is it... But this kid only had 1 antibiotic in the 3 years of his > life and I have not given this child any TYLENOL-- horrible for > the liver. He gets his Vit C-- Hey does anyeone know if Milk > thistle ok for little ones? > I am doing a big check on the CS but there are 500 brands anyone > know an ok brand?? > Hugs to all, > > Re: Re:New to Group > > > > > > Hi I think it's a strain or species. I was told 1a is the > > hardest to cure. I have never seen it put 1a/b, but that does'nt > > mean their is one :-) Wish you all the luck! > > > > emily_sweethang@... wrote: > > Yes I am 1a/b not sure what that is? what is the B part or I > > guess I will ask the doc next visit. But I know it is the hardest > > to treat or so she said. Of course when I do something bad I do > > it all the way!! lol > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 what's the GI doc say about the MT for little guy? i really don't know. for CS, commercial products that are good are also pricey. there's (or was) lots of testimonials on the Mesosilver site where people claim to have cleared HCV with it, and that's reputed to be one of the better, even best, ones. there's (only) one company that makes USP Rx CSilver for IV drips, called Argentyn 23 i believe, and they sell basically the same thing through retail distribution as Sovereign Silver. looking at the table on http://www.silver-colloids.com/Reports/reports.html it appears the absolute best bang for the buck would be mesosilver. all i've ever used is the bargain basement home brewed, which rates in the table as about the least efficient but also the cheapest by far... seems to work for me, but to really get over the top i guess spending money is unavoidable. maybe i'll buy a bunch of mesosilver and try several months of that if cash flow permits. i am getting bored with fussing with brewing CS although less than $1 per gallon has it's merits. i just arrived at the 4 month point of 1 liter/day, and am considering stopping CS for a couple months, switching over to ozonated water + MMS. a number of folks seem to get good results from MMS and HCV (manage but not clear so far), and i've found it seems to manage symptoms about as well as my CS but the stuff is really pretty foul to ingest, and for myself doesn't get any better as time goes on. so i might just do it for a month or two at which time the chlorine smell will scream " enough " . will do zeolites along with it, which are pretty cool too. no money for waiora NCD (a MLM product) but i have the cheaper competitor from NJersey stuff coming in the mail. by fall maybe i'll have a serious stash of mesosilver on hand to try. MMS is a powerful oxidizer as is ozone and peroxide, so MMS + ozone water aren't incompatible except they destroy your anti-oxidants requiring replenishment. i just finished re-stocking up on herbs and supps ala Buhner's and Zhang's protocols, finally have them all complete (i think; i know i'm broke) and enough for most of a year or so. that stuff does seem to help, but i haven't done it without CS or MMS so i can't judge how effectively... just know i feel better with than without. blah, blah, must get some food together. cheers, bobL > Re: Re:New to Group > > > Bob, > > YOu made me laugh (Bush Dynasty) ---((hugs) > Yeah your right I was typing to fast it was 1a/1b that I have and > my little guy 3 years old has 1a. So far we keep going back to > the gi doc he says come back next year. Taps his belly and that > is it... But this kid only had 1 antibiotic in the 3 years of his > life and I have not given this child any TYLENOL-- horrible for > the liver. He gets his Vit C-- Hey does anyeone know if Milk > thistle ok for little ones? > I am doing a big check on the CS but there are 500 brands anyone > know an ok brand?? > Hugs to all, > > Re: Re:New to Group > > > > > > Hi I think it's a strain or species. I was told 1a is the > > hardest to cure. I have never seen it put 1a/b, but that does'nt > > mean their is one :-) Wish you all the luck! > > > > emily_sweethang@... wrote: > > Yes I am 1a/b not sure what that is? what is the B part or I > > guess I will ask the doc next visit. But I know it is the hardest > > to treat or so she said. Of course when I do something bad I do > > it all the way!! lol > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 > > > Bee, > > I am new to this group and have lots of questions. > > About 25 years ago, I read Dr. Crooks's book after having chronic UTI's > and taking lots of antibotics. I took caprylic acid and got immediate > relief from UTI the first day. Had to stop taking it because of severe > indigestion problems, then took oral nylistat for several years, but I > didn't follow a good diet. I have read lots of your information and > did not see the use of caprylic acid...is this not used anymore? ==>Hi Bobbie. Welcome to our wonderful group! ==>Instead of caprylic acid I recommend the real thing, from which caprylic acid is made, which is coconut oil. > > What is a good HCI with betaine to buy? I have one, but it has the > pancreatic enzymes in it. Should I throw it away? ==>No, you can use up what you have, and then buy one the is Betaine HCl with or without pepsin. NOW is a good brand, and I buy Natural Factors that includes Fenegreek here in Canada. > > I want to be able to stick with the diet and see if some of my health issues will get better. I know it will be hard, already missing the chocolate. ==>Yes, it is hard, but every day you overcome the withdrawal symptoms is one step closer to good health. The only way to cure candida is to build up the immune system; it doesn't work to just " try " to kill it off. So antifungals are very minor compared to the diet and supplements, and it takes time and patience. In the meantime you will go through the natural healing processes (die-off and detoxifying symptoms and reactions), which aren't easy either, but they are a sign you are getting better. If you need a boost read the wonderful Success Stories from members of this group: http://www.healingnaturallybybee.com/success/index.php Not all of the stories are posted on my website yet, but you can get an idea from these as to the wonderful success people are having on this program. Onward & upward! The best in health, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 > > First of all- thanks for being here- I have printed out all the info and will read it and steer my diet in the right direction. I have a really bad stomach - drs say IBS. I just know it is " bad " . I also have candida (yes connected, asthma and most on my mind cervical dysplasia which I am trying to reverse before it becomes cancer (also candida connection). ==>Hi There! Welcome to our group. What is your name please? ==>You are correct that IBS, asthma, and cervical dysplasia is definitely candida related. This program is basically a healing program because the only way to get healthy, cure candida, etc. is to build up the immune system with proper nutrients. > > I have been on a desperate crusade to help cure myself or just > improve these things for a long time. I have been 100% raw, 80/10/10 (BAD CANDIDA) and now am mostly raw and confused. I have recently started having a lot of kefir to help my stomach but it seems like that was not a good idea. I just remember the best I ever felt was in India when I was eating a lot of yogurt. But I also was meditating every day and doing yoga so I am sure that had something to do with it. ==>Candida sufferers shouldn't have Kefir or yogurt since they contain too much sugar (during fermentation lactose is changed into another sugar call galactose). For more information see this reference in my main candida article " How to Successfully Overcome Candida " ; http://www.healingnaturallybybee.com/articles/intro2.php#s38 > > Sorry for the long post. I am just really hoping for some relief and most importantly to be cancer free. Any help or words of wisdom is appreciated. i will read the material tonight and probably have some questions. I am also trying to read through these past posts to catch up. ==>It is more important to read the article that is the basis of this group " How to Successfully Overcome Candida " ; http://www.healingnaturallybybee.com/articles/menu2_8.php > > Right now my diet includes a lot of green juice, salads with sprouted lentils, veggies and fermented veggies, bee pollen, goji, kefir, vega protein supplement and popcorn (it is a comfort food at times). Every now and then I want to eat more " normal " and I have a gluten free pizza or some indian food. ==>The only foods you eat that are acceptable on the candida diet are low-carb veggies and fermented veggies. Raw foods are also very hard on people who have IBS, as explained in my main candida article. After you read that article you will understand why most of the foods you are eating need to be eliminated. Also see handy diet and supplements lists on my website: http://www.healingnaturallybybee.com/articles/menu2_2.php http://www.healingnaturallybybee.com/articles/menu2_2.php We are here to help you get healthy, so after reading please get back to us with questions and concerns. Some questions may have been answered in previous group messages, so try doing a search of them first. The best in health, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 > > Hi Bee, > I actually cried when I saw there was a support group for candida. I > am miserable and feeling helpless, depressed and anxious. ==>Hi Rose. Welcome to our group. I'm glad you found us. We are here to help and support you so you can get healthy too!! > I had 2 rounds of antibiotics 6 weeks ago for a urinary/bladder > infection....since then I have been sick pretty much 75% of the time with nausea, indigestion, sour stomach, belching, loss of appetite, loss of energy, panic attacks, dizziness, rapid heart rates,insomnia, daily crying and of course my main thing that led me to candida research..oral thrush. I took Nystatin for 2 weeks and it seemed to help the oral thrush. I also purchased probiotics , a candida redux supplement, apple cidar vinegar, pau d'arco tea, garlic, omega 3, aloe vera juice, saurkraut and most importantly the Body Ecology book by Donna Gates. >I have been on the diet for about 6 days and at first my symptoms seemed to dissappear after a 2 day headache! I used to eat alot of wheat and fruit and milk and yogurt all the things I thought were good for me I recently learned feed candida. My main concern is getting my health back so I can get back to work ...being unemployed and accumulating dr. bills has also added stress to my life. I took the questionairre and it seems I probably have candida overgrowth. I can't know for sure but I have alot of symptoms which come and go. From what I've explained do you have any recommendations? Am I missing a piece of the puzzle in recovering? PLEASE HELP. ==>First, Donna Gates diet can help a lot but it does not work in the long run. Her diet allows many things that feed candida, and she doesn't include a high enough " good " fats program. In any case candida is only cured by building up the immune system so it becomes strong enough to " make " candida change back to the friendly organism it is supposed to be. That means a proper diet and supplements that together give the body what it needs so it can heal itself. This is just as much a healing program as it is for candida, so it will improve anyone's health! Unfortunately it take time and patience. It won't happen overnight and there are no quick fixes. It takes 1 month of natural healing for every year you've had poor health. For most people nowadays that is since before birth. You'll never regret doing this program. You will learn so much and know how to maintain your health life-long! I suggest you start by reading " How to Successfully Overcome Candida " and " Curing Candida, How to Get Started " ; http://www.healingnaturallybybee.com/candida/index.php Then you will understand what you need to do and why. Then you start step by step according to the articles. We are here to help you, but ensure you read first so we are all on the same page. Afterward please get back to us with questions, problems, etc. The best in health, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 , I am from Washington State I to have seizure. But have not been daring enough to go and wean myself off my meds. I have adult onset Epilepsy,have had for about 6 or maybe 7 years now. (I don't know how long now but anyways..)I guess what I wanted to tell you is don't feel bad about going to another DR. If I hadn't I strongly feel I would be in worse shape then I was. I am doing a lot better now. Things are hard sometimes but I also have some other things going on. Something to think about. Welcome to the Group. . > > Hi, > I joined your list to find some help for my son. I have a 17 year old son > who had a seizure at age 14 and then again on June 19th as we were weaning him > off his meds. I do not care for my current doctor and I would like to find > a new one. I look forward to joining your list. Anyone from NJ? > . > > > > **************Get the scoop on last night's hottest shows and the live music > scene in your area - Check out TourTracker.com! > (http://www.tourtracker.com?NCID=aolmus00050000000112) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Hi We seem to have similar stories. My 8 year old switched from Humira to Kineret in June. I am sure you know about EMLA cream. For my daughter, the kineret shots do not hurt nearly as much as the Humira shots. Humira nights used to be terrible, but she doesn't get nearly as anxious about the kineret shots. When she was on humira, I timed the length of time that the shot site hurt and it was seven minutes. I used to tell her that seven minutes was worth being able to walk, etc. We do keep the EMLA cream on for two hours (I asked her doctor if it was safe to do so). has abdominal pain also. We went to the pediatric GI doctor in July and he started her on Previcid, b/c she had reflux symptoms. He ordered a colonoscopy and endoscopy and it was supposed to be on Monday. I ended up " chickening out " I just couldn't put her through the preparation. Since starting kineret she has put on three pounds and I knew that she would probably lose it if I put her through the prep for the colonoscopy. I am waiting until Monday when she sees her pediatric rheumatologist and I am going to see what he says. I know I read that 20% of adults with Stills Disease (the adult form of systemic JRA) have abdominal pain, and I believe in my heart that is what is causing her stomach pain. She does take her MTX by injection (20 mg) per week. Every day is a battle, and I feel for you. We all want our kids to be carefree and healthy! Summer is so much easier to deal with all of this. It is hard to juggle the disease and school. Take care. Sophie 's mom, systemic jra, age 8 > > Hi, > While I'm new to this group, my family has been dealing with systemic > JIA for the last two years. My son, Tanner, was diagnosed at 9yrs old > and we are still on the roller coaster. We recently switched from > Humira to Anakinra and he absolutely hates the daily shots. He has no > problem with blood work, flu shots, even Enbrel was not an issue, but > Humira started a terrible pattern of crying and pain associated with > the shot. Anakinra has enduced even more anxiety. Does anyone have > any suggestions for easing the daily battle? He is still suffering > from severe episodes of nasuea and stomach pain, so I'm considering > going back to MTX as a shot instead of pills--two shots in one day? He > is such a great kid, but this disease seems to be sapping his spirit > and I'm floundering. We are on summer break and I can't imagine doing > this during the school year. I keep waiting for life to get easier for > him... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hi Sophie, I understand about the weight, Tanner has lost A LOT of weight over the last two years (over 15 pounds). I seem to be force feeding him these days. I'm sorry to hear your daughter is having the same stomach issues. Tanner also has acid reflux, but he says the stomach pain is different. Please let me know if your rheum. has any more suggestions for the stomach problems, our doctor was really hoping that kineret would take care of the stomach problems along with the systemic portion. Fortunately the rash and fever have disappeared for now, and hopefully his d-dimer has dropped as well. A quick question, do you know how high your daughters d-dimer has gone. Tanner was at 2830 last month during this flare, I'm just curious how high other systemic kids tend to go during flares. Does have a routine for the daily shots? Where do you give them to her? Tanner is really stuck on only taking the shot on his thighs, specifically his left thigh. I know it is a control issue for him. I'm really trying to get him to try other spots to see if they are less painful..  Thank you for sharing it is nice to know I'm not alone. Best wishes, Tristin (Tanner, 11 systemic) Re: new to group Hi We seem to have similar stories. My 8 year old switched from Humira to Kineret in June. I am sure you know about EMLA cream. For my daughter, the kineret shots do not hurt nearly as much as the Humira shots. Humira nights used to be terrible, but she doesn't get nearly as anxious about the kineret shots. When she was on humira, I timed the length of time that the shot site hurt and it was seven minutes. I used to tell her that seven minutes was worth being able to walk, etc. We do keep the EMLA cream on for two hours (I asked her doctor if it was safe to do so). has abdominal pain also. We went to the pediatric GI doctor in July and he started her on Previcid, b/c she had reflux symptoms. He ordered a colonoscopy and endoscopy and it was supposed to be on Monday. I ended up " chickening out " I just couldn't put her through the preparation. Since starting kineret she has put on three pounds and I knew that she would probably lose it if I put her through the prep for the colonoscopy. I am waiting until Monday when she sees her pediatric rheumatologist and I am going to see what he says. I know I read that 20% of adults with Stills Disease (the adult form of systemic JRA) have abdominal pain, and I believe in my heart that is what is causing her stomach pain. She does take her MTX by injection (20 mg) per week. Every day is a battle, and I feel for you. We all want our kids to be carefree and healthy! Summer is so much easier to deal with all of this.. It is hard to juggle the disease and school. Take care. Sophie 's mom, systemic jra, age 8 > > Hi, > While I'm new to this group, my family has been dealing with systemic > JIA for the last two years. My son, Tanner, was diagnosed at 9yrs old > and we are still on the roller coaster. We recently switched from > Humira to Anakinra and he absolutely hates the daily shots. He has no > problem with blood work, flu shots, even Enbrel was not an issue, but > Humira started a terrible pattern of crying and pain associated with > the shot. Anakinra has enduced even more anxiety. Does anyone have > any suggestions for easing the daily battle? He is still suffering > from severe episodes of nasuea and stomach pain, so I'm considering > going back to MTX as a shot instead of pills--two shots in one day? He > is such a great kid, but this disease seems to be sapping his spirit > and I'm floundering. We are on summer break and I can't imagine doing > this during the school year. I keep waiting for life to get easier for > him... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 HI, I'm Ed, my daughter is now 13 years old and has extremely severe CP from dying for 35 minutes in the womb. We started HBOT when she was 5 with Neubauer. It dramatically changed her life. She remains a quad, but can attend school full time, is in full inclusion and has a tested IQ of 148! I believe she would not be alive if it wasn't for HBOT. Certainly, her life would be significantly worse. I have pursued HBOT very, very hard since then (Sponsored the 2nd Intl Symposium on HBOT for the CP child; sponsored the debate on HBOT for CP at the Int;l Congress of Hyperbaric Medicine, etc.; wrote chapt 7 of Neubauer's book on HBOT for CP; sponsored CA legislation AB2763 for reimburement, sued California; built a clinic and founded the CHERISH Foundation, and much more). CHERISH pdoes a lot for HBOT, including right now is implementing the most significant HBOT for autism study to date; with the UC Medical SChool. We are almost done with it. From what little you said, unless you can travel, you need to look at a home chamber. Despite what some people on this list might think (pro and con) it should be helpful. But, it does not deliver the same level of treatment as medicinal HBOT. There are a few nuances that people do not understand. But, the bottom line is you have to find a way to get HBOT, if traveling is difficult, then you need to look at the home chamber. And, I am pretty sure you will be happy with it. The positive is that it is much easier to do this at home than traveling to a clinic, and you will do more and more treatments. With mild HBOT, numbers are very, very important. You do not have the same issue with medicinal, I believe. But, I would tell you that IF you can travel, there is a clinic in the Hudson Valley that is pretty good and very dedicated. I do not know what they charge. Also, you can look up clinics online at www.netnet.net/mums. You can send any other question you might have to me directly or through this site. my direct email is ednemeth@... Blessings! Ed At 06:01 AM 10/10/2008, you wrote: >Hello. I am new to this group. After reading past posts, I am feeling >completely overwhelmed! I am a parent of a 5 year old with CP. I am >researching hbot for treatment of CP. We live in Upstate NY and I am >having a hard time finding an hbot center close by. I am also >overwhelmed by the cost of the hbot. If anyone has any information (in >layman's terms!) they can provide me with that may help, I would >greatly appreciate it! > > Ed Nemeth President, CEO Spectrum Events 444 North Third Street, Suite 304 Sacramento, CA 95814 916-856-7044 x 339 916-856-7040 (fax) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 You really should not delay with getting your child treated. Either hard or soft chamber is great. Contrary to what most people think, a recent study shows the portable chambers are just as effective as the hard chambers at treating CP. I can provide a copy of this study if you wish to read it. Sent from my Verizon Wireless BlackBerry [ ] New to group Hello. I am new to this group. After reading past posts, I am feeling completely overwhelmed! I am a parent of a 5 year old with CP. I am researching hbot for treatment of CP. We live in Upstate NY and I am having a hard time finding an hbot center close by. I am also overwhelmed by the cost of the hbot. If anyone has any information (in layman's terms!) they can provide me with that may help, I would greatly appreciate it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 What recent study is that? At 05:44 PM 10/10/2008, you wrote: >You really should not delay with getting your child treated. Either >hard or soft chamber is great. Contrary to what most people think, a >recent study shows the portable chambers are just as effective as >the hard chambers at treating CP. I can provide a copy of this study >if you wish to read it. >Sent from my Verizon Wireless BlackBerry > > [ ] New to group > > >Hello. I am new to this group. After reading past posts, I am feeling >completely overwhelmed! I am a parent of a 5 year old with CP. I am >researching hbot for treatment of CP. We live in Upstate NY and I am >having a hard time finding an hbot center close by. I am also >overwhelmed by the cost of the hbot. If anyone has any information (in >layman's terms!) they can provide me with that may help, I would >greatly appreciate it! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 Ed,  I am referring to the Dr. Mukherjee study that was performed on 128 children.  The results of the study were released at the 6th International Symposium on HBOT in Torrance, CA in July 2008.  It clearly found that there was " no significant difference " between the results when the children were treated at 1.75 ATA and 100% 02, 1.5 ATA and 100% 02, and at 1.3 ATA with ambient air.  Now, I ask that you please do not argue with the statement I have made or the study, of which you can read part of below. In doing so, we will confuse and possibly prevent this lady from getting the help that her child needs. As with most of the arguing that occurs on this list serve, although it does shed some light on HBOT, it may confuse and " turn people off " to the use of HBOT.  I have included some quotes from the study for you to read:  That is a hard decision we must take, especially as the much more affordable 1.3 ATA gives statistically similar benefit at almost half the cost, which many more parents in the less economically affluent segments can afford.  Also that 1.3 ATA Low pressure Hyperbaric Air Therapy is Statistically Not Inferior to Regular HBOT at 1.5 / 1.75 ATA using 100% oxygen.   >You really should not delay with getting your child treated. Either >hard or soft chamber is great. Contrary to what most people think, a >recent study shows the portable chambers are just as effective as >the hard chambers at treating CP. I can provide a copy of this study >if you wish to read it. >Sent from my Verizon Wireless BlackBerry > > [ ] New to group > > >Hello. I am new to this group. After reading past posts, I am feeling >completely overwhelmed! I am a parent of a 5 year old with CP. I am >researching hbot for treatment of CP. We live in Upstate NY and I am >having a hard time finding an hbot center close by. I am also >overwhelmed by the cost of the hbot. If anyone has any information (in >layman's terms!) they can provide me with that may help, I would >greatly appreciate it! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 I CHIME what ED has said about HBOT, I started as patient myself in 1989, my three daughters were treated in 1991 and from there they have had 1000's of treatments, however prior to HBOT there was no hope, auto immune, autism non verbal and a host of other problems. they went from disabled to gate or gifted with an IQ of over 140 and 4,0 gpa. Now 19, 21, 22 I can tell you this fact, I do not know what would have happened with out HBOT. I entered into the field of HBOT in 1991 myself. This is a quick summary of our life and there are to many details to even list, However you may read about our situation and 150 others and a website of over 800 pages at www.hbot4u.com I opened my own clinic in 1998 hit the ground running! my husband and I were the first to LOWER the price of HBOT! I urge everyone to wisely consider the science in HBOT. My zeal for HBOT has remained and will remain. Sincerely and CHT, EMT, DMT. Rapid Recovery Hyperbarics www.hbot4u.com Re: [ ] New to group > HI, > > I'm Ed, my daughter is now 13 years old and has extremely > severe CP from dying for 35 minutes in the womb. > > We started HBOT when she was 5 with Neubauer. It dramatically > changed her life. She remains a quad, but can attend school full > time, is in full inclusion and has a tested IQ of 148! I believe she > would not be alive if it wasn't for HBOT. Certainly, her life would > be significantly worse. > > I have pursued HBOT very, very hard since then (Sponsored the 2nd > Intl Symposium on HBOT for the CP child; sponsored the debate on HBOT > for CP at the Int;l Congress of Hyperbaric Medicine, etc.; wrote > chapt 7 of Neubauer's book on HBOT for CP; sponsored CA legislation > AB2763 for reimburement, sued California; built a clinic and founded > the CHERISH Foundation, and much more). CHERISH pdoes a lot for > HBOT, including right now is implementing the most significant HBOT > for autism study to date; with the UC Medical SChool. We are > almost done with it. > > From what little you said, unless you can travel, you need to look > at a home chamber. > > Despite what some people on this list might think (pro and con) it > should be helpful. But, it does not deliver the same level of > treatment as medicinal HBOT. There are a few nuances that people do > not understand. > > But, the bottom line is you have to find a way to get HBOT, if > traveling is difficult, then you need to look at the home chamber. > And, I am pretty sure you will be happy with it. > > The positive is that it is much easier to do this at home than > traveling to a clinic, and you will do more and more > treatments. With mild HBOT, numbers are very, very important. You > do not have the same issue with medicinal, I believe. > > But, I would tell you that IF you can travel, there is a clinic in > the Hudson Valley that is pretty good and very dedicated. I do not > know what they charge. > > Also, you can look up clinics online at www.netnet.net/mums. > > You can send any other question you might have to me directly or > through this site. > > my direct email is ednemeth@... > > Blessings! > Ed > > > > > > > At 06:01 AM 10/10/2008, you wrote: > >>Hello. I am new to this group. After reading past posts, I am feeling >>completely overwhelmed! I am a parent of a 5 year old with CP. I am >>researching hbot for treatment of CP. We live in Upstate NY and I am >>having a hard time finding an hbot center close by. I am also >>overwhelmed by the cost of the hbot. If anyone has any information (in >>layman's terms!) they can provide me with that may help, I would >>greatly appreciate it! >> >> > > Ed Nemeth > President, CEO > Spectrum Events > 444 North Third Street, Suite 304 > Sacramento, CA 95814 > > 916-856-7044 x 339 > 916-856-7040 (fax) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 Please check out our web site. Our portable hyperbaric chambers start at $6,995. Diane N. Pechenick diane@... http://www.healingdives.com > Hello. I am new to this group. After reading past posts, I am feeling > completely overwhelmed! I am a parent of a 5 year old with CP. I am > researching hbot for treatment of CP. We live in Upstate NY and I am > having a hard time finding an hbot center close by. I am also > overwhelmed by the cost of the hbot. If anyone has any information (in > layman's terms!) they can provide me with that may help, I would > greatly appreciate it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 I just wanted to let you know there is a center in Great Neck, Long Island and there is one in Parsippany, New Jersey. > > Hello. I am new to this group. After reading past posts, I am feeling > completely overwhelmed! I am a parent of a 5 year old with CP. I am > researching hbot for treatment of CP. We live in Upstate NY and I am > having a hard time finding an hbot center close by. I am also > overwhelmed by the cost of the hbot. If anyone has any information (in > layman's terms!) they can provide me with that may help, I would > greatly appreciate it! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 HI The elks club cripple children's fund may help pay for the hbot. They helped pay for the first 30sessions for my son @100.00 per session about 4years ago. Cordella [ ] New to group Hello. I am new to this group. After reading past posts, I am feeling completely overwhelmed! I am a parent of a 5 year old with CP. I am researching hbot for treatment of CP. We live in Upstate NY and I am having a hard time finding an hbot center close by. I am also overwhelmed by the cost of the hbot. If anyone has any information (in layman's terms!) they can provide me with that may help, I would greatly appreciate it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 > > Hi Bee and members: > > I found this site today while trying to research all I could about > candida. Please forgive me if this post is too long. I'm 36 years old > and have been having persistent yeast problems for almost one year > now. I've had yeast issues in the past but they've always responded to > treatment and cleared up eventually. This past year though has been > different- also a very stressful one so I guess that explains a lot. I > think all my research has left me more confused than ever because > there's so much conflicting information. I woould really appreciate > some answers to some of my concerns. Please bear with me if the > questions seem absurd or naiive- I'm simply trying to learn more about > this thing. +++Hi Tricia. Welcome to our group. You have certainly come to the right place to cure your candida. > > 1. Can I do this program while breastfeeding or pregnant? +++Yes you can. You shouldn't have some antifungals but there are warnings in my article about them. You can have unrefined coconut oil and garlic as antifungals. > 2. What is the difference between this program and Donna Gates' Body Ecology candida program? +++The major differences are she allows many foods that feed candida, foods that are damaging to the body, and she doesn't recommend high " good " fats like I do. My program is unique and it works because of these important difference. We have many people come here after trying her program, and others, such as SCD. > 3. What is the difference between this program and the Biamonte method-www.health-truth.com. +++I don't know that program, but if you read my program you'll know the differences. I suggest you start with 2 main article: -How to Successfully Overcome Candida -Curing Candida, How to Get Started Both of them are in the candida section on my website: http://www.healingnaturallybybee.com/candida/index.php +++Once you've read please get back to us with questions. We are here to help you get well too! The best in health, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 > > > +++Hi Tricia. Welcome to our group. You have certainly come to the > right place to cure your candida. > > > ++Once you've read please get back to us with questions. We are > here to help you get well too! > > The best in health, Bee > Thanks for the encouragement. I've been going through the files you recommend. Tricia Quote Link to comment Share on other sites More sharing options...
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