Guest guest Posted December 29, 1999 Report Share Posted December 29, 1999 thanks for letting us know Maui Girl!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Thanks for the info Ric....I'll look it up now. Thanks for EVERYTHING! Barb > http://www.hepcbc.ca/FAQv6.htm Barb, here is that link to the FAQ I told you about. There is a section about Cryo.............ric > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 When I was diagnosed my viral load was 3 million. Opinions differ on whether that is high or not. I was grade 2 and stage 2-3 with genotype 1b. I went through treatment twice. First time with daily Infergen monotherapy, second with Pegasys/Copegus. I got lucky on the second try. Doug > hi > > got my bx back grade 2 stage 3 geno 1 viral load 11 million, think > tx might work for me with a high vl? has anyone here got a svr with a > high vl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 hello GENE , I DID SHOT 17 TONIGHT OF 24. My viral load was 19 million(according to my Dr.high normal), and I am genotype 2b. I dont think viral load is a factor in treatment. I AM LUCKY MY GENOTYPE HAS A 70-80% CHANCE OF ELIMINATING THE VIRUS WHERE AS UNFORTUNATLY GENOTYPE 1 HAS A 30-40% CHANCE OF RECOVERY. iM ON PEGETRON(RIBAVIRINE) AND IT IS VERY HARD ON BOTH MY PHYSICAL AND MENTAL HEALTH. iF I DONT CLEAR THE VIRUS THIS TIME I DOUBT IF I WOULD TRY THE TREATMENT AGAIN. wHAT EVER DECISION YOU MAKE GENE GOOD LUCK TO YOU. ALAN --- gene43609 wrote: > got my bx back grade 2 stage 3 geno 1 viral load 11 > million, think > tx might work for me with a high vl? has anyone here > got a svr with a > high vl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 , one thing that is apparent after eons of MT use is there is no downside. Everyone agrees it will do no harm. I'm talking about MT use alone. Someone else will have to speak about how it might react with other drugs, perscribed, OTC, herbs, ect. " You can explore the universe looking for somebody who is more deserving of your love and affection than you are yourself-- and you will not find that person anywhere. " Buddhist saying. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Thanks Ric. So we're not sure how it may interact with IFN, Ribavirin, EPO, Neupogen etc, right? > > , one thing that is apparent after eons of MT use is there > is no downside. Everyone agrees it will do no harm. I'm talking > about MT use alone. Someone else will have to speak about how it > might react with other drugs, perscribed, OTC, herbs, ect. > > " You can explore the universe looking for somebody who is more deserving of > your love and affection than you are yourself-- > and you will not find that person anywhere. " > Buddhist saying. > > > > > > > > > > > > > > > > > It's a pleasure having you join in our conversations. We hope you have > found the support you need with us. > > If you are using email for your posts, for easy access to our group, just > click the link-- > http://groups.yahoo.com/group/Hepatitis_C_Central/ > > Happy Posting > > > ________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Right and there are warnings about not using it while on IFN treatment and use with antidepressants ect........ Here's a good article sent to me by our Teena.. 2. Basics-1 A Warning about Milk Thistle and Drug Interactions below). Take .... March 2004 4 Milk Thistle Milk thistle, Silybum marianum , is the most ... considering taking a milk thistle product, talk http://www.hcvadvocate.org/hepatitis/factsheets_pdf/HERBS_color.pdf let me know if you can't pull it up......ric " You can explore the universe looking for somebody who is more deserving of your love and affection than you are yourself-- and you will not find that person anywhere. " Buddhist saying. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 c'mon some of you medical types. speak up about this liver cleanse stuff. I want to get past the jokes. does it have anything to do with hepatitis?. will it help our livers? will it make us feel better? does our liver really look like a taco full of rocks? Why don't the transplant surgeons notice? Is this BS?. Should anne get out the hammer? ric *rummage* *rummage* *rummage*........ I'm looking for it ric, just in case 'k??? anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 try this link: http://www.doctormurray.com/ s wrote: > I'd be afraid that there was some hidden downside to Milk Thistle. > Oh, and this link didn't work for me. www.dr.murray.com > > > > > > Serena, those articles are just about gall bladder stones. I > > guess it makes sense that if stones are there (and I had some so > > I got it yanked) and the kidneys, why not the liver? we even > > have the personal story of a cup of gravel. So I believe they > > can form there. Do they NEED to come out? maybe. Will you be > > healthier once they do? maybe. will your bile duct work better? > > I'm sure it would. but I have no GB, hence, no bile? Some other > > questions I've had is will the cleanse work for those with > > cirrhosis? another thought is why would folks on the transplant > > list want their billirubin to go down? > > Also Serena, I didn't see anything in your last post that > > convinced me that you were cured of HCV These are just my > > observations, I'm not for or against it. I'm just trying to > > figure out what the benefits are........ric > > > > " You can explore the universe looking for somebody who is more > deserving of > > your love and affection than you are yourself-- > > and you will not find that person anywhere. " > > Buddhist saying. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > It's a pleasure having you join in our conversations. We hope you have > > found the support you need with us. > > > > If you are using email for your posts, for easy access to our > group, just > > click the link-- > > http://groups.yahoo.com/group/Hepatitis_C_Central/ > > > > Happy Posting > > > > > > ________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 try the other link www.doctormurray.com IF you read some of the stuff, it says it " MAY " interfere but I honestly have never heard of it doing that with anyone! But YOU have to be comfy with the decisions that you make so talk with your doc if you are unsure.. I have found that other heppers KNOW much MORE than the docs do because we take the time to study it and research it, most docs do not have the time to devote to ONE disease! --- Edd Benson wrote: > try this link: http://www.doctormurray.com/ > > s wrote: > > > I'd be afraid that there was some hidden downside > to Milk Thistle. > > Oh, and this link didn't work for me. > www.dr.murray.com > > > > > > > > > > > Serena, those articles are just about gall > bladder stones. I > > > guess it makes sense that if stones are there > (and I had some so > > > I got it yanked) and the kidneys, why not the > liver? we even > > > have the personal story of a cup of gravel. So > I believe they > > > can form there. Do they NEED to come out? > maybe. Will you be > > > healthier once they do? maybe. will your bile > duct work better? > > > I'm sure it would. but I have no GB, hence, no > bile? Some other > > > questions I've had is will the cleanse work for > those with > > > cirrhosis? another thought is why would folks > on the transplant > > > list want their billirubin to go down? > > > Also Serena, I didn't see anything in your last > post that > > > convinced me that you were cured of HCV These > are just my > > > observations, I'm not for or against it. I'm > just trying to > > > figure out what the benefits are........ric > > > > > > " You can explore the universe looking for > somebody who is more > > deserving of > > > your love and affection than you are yourself-- > > > and you will not find that person anywhere. " > > > Buddhist saying. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > It's a pleasure having you join in our > conversations. We hope you have > > > found the support you need with us. > > > > > > If you are using email for your posts, for easy > access to our > > group, just > > > click the link-- > > > > http://groups.yahoo.com/group/Hepatitis_C_Central/ > > > > > > Happy Posting > > > > > > > > > ________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 I think its more because the ppl who sit on the boards of the drug companies are in bed with the FDA.. YOU are right when you say that they cannot or willnot prescribe a natural substance and thats because the FDA have spent kazillions of dollars to 'inform' the medical docs that natural substances do not work (when they most certainly do) but the reason they do this is that all natural substances can NOT be patented! They have tried many times to purchase some of the protocols of some of the natural cures from the person who founded it and when they were refused, the AMA, FDA and the drug companies have spent so much money to defame the protocol. If you are really interested in seeing just how biased the FDA and the drug companies are just read this book When healing becomes a crime.. by Ken Ausbel....its an eyeopener... I think the worst part is that they really are NOT interested in cure because there is so much money in DIAGNOSIS AND TREATMENT,, not cure...if all the diseases were cured, the drug companies would be put out of business! --- SERENAKASCHAK@... wrote: > Hello Rik, > I think transplant surgeons DO notice. I also > think that by the time > you get to one of them, it is really so bad, and > some are so sick and medical > school doesn't cover THIS, so they keep quiet. > They are not trained in > homeopathy. they cannot guarantee results, and they > are looking to do research in > this area (transplants). > They re trained to trust only patented > pharmaceuticals from the " big guys " > They re not really trained to think about this > stuff. > Yes, doctors do use human beings as guinea pigs. > No, your doc can't say, just take some of these > herbs. Well, they could > but, they could be sued and found guilty of > " uncommon " medical practice. they > do what med school says. > This web site is a 'medical " web site. There are > gallstones and liver > stones. > > _http://digestive.niddk.nih.gov/ddiseases/pubs/gallstones/#causes_ > > (http://digestive.niddk.nih.gov/ddiseases/pubs/gallstones/#causes) > > > Note that the first treatment suggested is SURGERY > (surprise, surprise) > > Note that the second is an oral pill. Do you know > what is in CHEMIX ? > Could be the same stuff as the homeopathic doctor > recommends, but this stuff is > of " unknown " makeup. Who knows what's in it? > The modern docs try to KILL the virus. the > homeopaths try to get the body > to optimal health so that the body can take care of > itself. > All of this from a girl with a premedical degree, > and a couple of > appications in at the local med schools. > there is no one answer. Cleansing your body can > help you along until the > docs come up with the real cure that doesn't kill > you. Or, if taken in time, > before irreversable damage is done, this method can > cure. > I am living proof. > Serena > > > [Non-text portions of this message have been > removed] > > Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 my drs have told me not to take milk thistle does nothing wont clear hep only treatment he advised me that it may interfere with treatment and as grueling as treatment i will not take it Annita--- In Hepatitis_C_Central , johnny davis <twistedjohnny853@y...> wrote: > jackie does it keep it in check stop the spread make u feel better thanks 4 talking to me > ill talk later > but thanks 4 talking to me > i appreciate it > johnny > Jackie on <redjaxjm@y...> wrote: > Milk Thistle only helps to support your liver > function, but will not kill this virus, only the > current treatment will do that sadly... Milk Thistle > is good and I DO take it but it never cleared my > virus, only the tx did... > > --- johnny davis <twistedjohnny853@y...> wrote: > > i aint a medical type drs just want money but herbal > > therapy works thisle of milk aq bulgarian liver > > spealist at the va told me when i asked about > > alternatives > > johnny > > > > Hobbs <richobbs1@y...> wrote: > > c'mon some of you medical types. speak up about this > > liver cleanse > > stuff. I want to get past the jokes. does it have > > anything to do with > > hepatitis?. will it help our livers? will it make us > > feel better? does > > our liver really look like a taco full of rocks? > > Why don't the > > transplant surgeons notice? Is this BS?. Should > > anne get out the > > hammer? ric > > > > > > > > > > It's a pleasure having you join in our > > conversations. We hope you have found the support > > you need with us. > > > > If you are using email for your posts, for easy > > access to our group, just click the link-- > > http://groups.yahoo.com/group/Hepatitis_C_Central/ > > > > Happy Posting > > > > > > > > --------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 I REALLY think each person needs to research the Milk Thistle and realize that the docs dont believe in anything natural because they were NOT taught anything about it and because they have non-stop streams of drug reps in their offices giving them free samples of drugs,, MILK THISTLE for me is a good thing and I have NEVER known anyone who had an adverse reaction to it and furthermore I believe that the docs will say anything to prevent you from taking anything that THEY cant script.. I WAS lucky because MY doc knew a lot about MT and recommended it while on tx,, I CLEARED!!! --- Annita Finkemeier wrote: > my drs have told me not to take milk thistle does > nothing wont clear > hep only treatment he advised me that it may > interfere with > treatment and as grueling as treatment i will not > take it Annita--- > In Hepatitis_C_Central , johnny davis > > <twistedjohnny853@y...> wrote: > > jackie does it keep it in check stop the spread > make u feel better > thanks 4 talking to me > > ill talk later > > but thanks 4 > talking to me > > i > appreciate it > > > johnny > > Jackie on <redjaxjm@y...> wrote: > > Milk Thistle only helps to support your liver > > function, but will not kill this virus, only the > > current treatment will do that sadly... Milk > Thistle > > is good and I DO take it but it never cleared my > > virus, only the tx did... > > > > --- johnny davis <twistedjohnny853@y...> wrote: > > > i aint a medical type drs just want money but > herbal > > > therapy works thisle of milk aq bulgarian liver > > > spealist at the va told me when i asked about > > > alternatives > > > johnny > > > > > > Hobbs <richobbs1@y...> wrote: > > > c'mon some of you medical types. speak up about > this > > > liver cleanse > > > stuff. I want to get past the jokes. does it > have > > > anything to do with > > > hepatitis?. will it help our livers? will it > make us > > > feel better? does > > > our liver really look like a taco full of rocks? > > > > Why don't the > > > transplant surgeons notice? Is this BS?. Should > > > anne get out the > > > hammer? ric > > > > > > > > > > > > > > > It's a pleasure having you join in our > > > conversations. We hope you have found the > support > > > you need with us. > > > > > > If you are using email for your posts, for easy > > > access to our group, just click the link-- > > > > http://groups.yahoo.com/group/Hepatitis_C_Central/ > > > > > > Happy Posting > > > > > > > > > > > > --------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Annita, God Bless you honey, I am glad you are listening to your doc but I really BELIEVE your doc is wrong!!!! The studies they did were actually done at OHSU on MT and found it to be very helpful for LIVER health,, not necessarily for treatment of HEP but it DOES help the liver work better. The uneducated docs say that it 'might'(might not too) interfere with tx and I BELIEVE they are wrong in that too... Initially when they were first using the Pegged INF and Riba, they didnt want you to take it because they wanted to know that the PEG and Riba were working and not the MT, so they told everyone it 'might' skew the results for the studies.. but I said too bad, its my body and I dont give a fig about the studies or trials or whatever, I just wanted to clear and MY PCP understood my understanding about MT and he KNEW it was good and recommended it. HE was a doc who could think outside the box and was not a cookie cutter doc who would actually personalize tx and all of his patients cleared!.... sorry annita, I know you trust your doc and thats a good thing, but most of us heppers know more about this disease because we have had it for so long than the doc's who are just learning about it now..... --- Jackie on wrote: > I REALLY think each person needs to research the > Milk > Thistle and realize that the docs dont believe in > anything natural because they were NOT taught > anything > about it and because they have non-stop streams of > drug reps in their offices giving them free samples > of > drugs,, MILK THISTLE for me is a good thing and I > have > NEVER known anyone who had an adverse reaction to it > and furthermore I believe that the docs will say > anything to prevent you from taking anything that > THEY > cant script.. I WAS lucky because MY doc knew a lot > about MT and recommended it while on tx,, I > CLEARED!!! > > --- Annita Finkemeier > wrote: > > > my drs have told me not to take milk thistle does > > nothing wont clear > > hep only treatment he advised me that it may > > interfere with > > treatment and as grueling as treatment i will not > > take it Annita--- > > In Hepatitis_C_Central , johnny > davis > > > > <twistedjohnny853@y...> wrote: > > > jackie does it keep it in check stop the spread > > make u feel better > > thanks 4 talking to me > > > ill talk later > > > but thanks 4 > > talking to me > > > i > > appreciate it > > > > > johnny > > > Jackie on <redjaxjm@y...> wrote: > > > Milk Thistle only helps to support your liver > > > function, but will not kill this virus, only the > > > current treatment will do that sadly... Milk > > Thistle > > > is good and I DO take it but it never cleared my > > > virus, only the tx did... > > > > > > --- johnny davis <twistedjohnny853@y...> wrote: > > > > i aint a medical type drs just want money but > > herbal > > > > therapy works thisle of milk aq bulgarian > liver > > > > spealist at the va told me when i asked about > > > > alternatives > > > > johnny > > > > > > > > Hobbs <richobbs1@y...> wrote: > > > > c'mon some of you medical types. speak up > about > > this > > > > liver cleanse > > > > stuff. I want to get past the jokes. does it > > have > > > > anything to do with > > > > hepatitis?. will it help our livers? will it > > make us > > > > feel better? does > > > > our liver really look like a taco full of > rocks? > > > > > > Why don't the > > > > transplant surgeons notice? Is this BS?. > Should > > > > anne get out the > > > > hammer? ric > > > > > > > > > > > > > > > > > > > > It's a pleasure having you join in our > > > > conversations. We hope you have found the > > support > > > > you need with us. > > > > > > > > If you are using email for your posts, for > easy > > > > access to our group, just click the link-- > > > > > > http://groups.yahoo.com/group/Hepatitis_C_Central/ > > > > > > > > Happy Posting > > > > > > > > > > > > > > > > --------------------------------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Good one Ric, I had forgotten about this site,, lots of helpful info! --- Hobbs wrote: > Hey Annita, have you seen this site yet? It's a few > years old now but > still applies........ric > http://www.hepcsurvivalguide.org/comboguide.htm > > > Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Hi Ric, Please jump in any time with your thoughts. Actually, I agree with you 100%. As a child from the 60's, I just can't afford to think any other way than what you shared. ana > I'm going to jump into this discussion with a little diferent > perspective (as usual). > Stats are stats and percentages are percentages. I have grown to > be a little skeptical of the blood to blood only transfer thing. > HCV virions have been discovered in semen, vaginal fluids, > saliva, and tears. Also as Janet has pointed out, small tears > and abraisons can be on and in genitals without any blood > visible. Now, 1% isn't just a few people. In the US alone that > could be 40 to 50 thousand folks. As new technology is being > developed to discover small amounts of the virus, the CDC > guidelines are being adjusted. To use protection, to ask about > bleeding gums ect. remaines a personal choice. And thats how it > should be. But I believe the time of saying don't worry is past. > I would like to say there is a very real possibility of transfer > by sex. Personal stories are helpful in some circumstanses, in > others it could give a false sense of security. Most men don't > like to use condoms and some women would never think to ask. If > you are the least little bit concerned, use protection. We must > get past our inital reaction of saying only a 1% chance or it > didn't happen to me so why would it happen to you. I'm not > saying that any of us have said that. We must picture ourselves > as that person who does test positive when sex was the only risk > factor and know how they feel IMHO.....ric Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 I thought I better introduce myself. I have been reading the posts now for a few weeks and getting so much out of them. I am 51 and have been heavy my whole life. After my child was born -- close to 20 years ago now. I got up to 195 and stayed there for awhile. About 10 years ago I lost 50 pounds and have mostly kept off at least 40. Right before Christmas I was at 150 and had been there for close to a year. The holidays though put 9 pounds on me and I just can't seem to get them off!! It amazes me that in the course of a couple weeks I could gain 9 pounds. I am working on the weight loss. 's podcasts really help. I want to stop obsessing about food. I want to be fit, lean and healthy. I want to be a great role model to my kid. I don't need to be really slender. 145-150 is fine with me. Now my clothes are just not fitting well and that is mentally and physically not a good place for me to be. Thanks to all of you for your posts. reeze Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 , The first cast is so hard, I can still remember all the emotions and questions I had when my son was put in his first cast. It does get easier, children are so amazing and they learn to adapt and adjust very quickly. Yes, the casts really do work and my son is living proof. He started at 49 degrees and after 7 casts and a brace, he is now at zero with a perfectly straight and beautiful spine. You are such a wonderful mom to have found this treatment for son. We are all here for you to help you in this journey, please dont hesitate to ask any questions or vent any feelings you may have. Barb Mom to Evan (treated at Strong Memorial Hospital in Rochester, NY, currently cast and brace free) > > My son got his first cast 4days ago.I feel so bad I know it's for the best but it's terrible seeing your baby in a cast.do these things really work?I feel so lost. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 Hi , I just want to say welcome to CAST, and to agree with everything that's been said. I was depressed on and off the first few weeks or month of the first cast. I cried and got into bed a few times when my husband was watching my son. It was painful to see him lose some of his mobility and get stuck like a turtle on the floor, unable to get up without our help at first. He loved to collect leaves and had trouble getting down on his knees and getting back up, and his balance was thrown off, we had a lot of hard hits on his noggin. But as everyone has said, it does get easier, and now in cast number 3, it is just normal lfe for us. Most people say it's harder on the parents than the child. They are resilient and do re-learn everything rather quickly. May I ask where you had your casting done? Is is Mehta style? There should be no pain in the cast, other than maybe sore muscles for a couple days, but it is an adjustment, especially in the beginning. Hang in there and feel free to complain or cry or vent to us, we've all been there! You and your child can do it and it is all so worth it in the end. It's an emotional journey, and a "project", but it is the very best thing you could be doing for your child's future.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25) Subject: Re: HiTo: infantile_scoliosis Date: Sunday, September 27, 2009, 8:00 AM ,The first cast is so hard, I can still remember all the emotions and questions I had when my son was put in his first cast. It does get easier, children are so amazing and they learn to adapt and adjust very quickly. Yes, the casts really do work and my son is living proof. He started at 49 degrees and after 7 casts and a brace, he is now at zero with a perfectly straight and beautiful spine. You are such a wonderful mom to have found this treatment for son. We are all here for you to help you in this journey, please dont hesitate to ask any questions or vent any feelings you may have.BarbMom to Evan (treated at Strong Memorial Hospital in Rochester, NY, currently cast and brace free)>> My son got his first cast 4days ago.I feel so bad I know it's for the best but it's terrible seeing your baby in a cast.do these things really work?I feel so lost.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 Hi , I understand your pain.... It's a process. So hard to go from having your "squishy" baby to having a baby that is hard as a rock. You'll see that each day a little more progress will be made and eventually it will just be the norm. The first 2 weeks were hell for me and then we all got into a routine and realized that, yes, our daughter was doing all the things other kids do at her age. Give it time and give yourself some time to adjust.... It's natural to feel angry, sad, etc over what is happening in your life and you are entitled to feel that without guilt. Casting has been a blessing for our family, but I have thrown myself quite a few pity parties over the past 2 years before I pick myself up off the floor. You asked if casting works.... It seems to have been the solution for a majority of the kids who have had it. Some will eventually need surgery but the casting gives them the opportunity to live surgery free for as long as possible, so I feel that the benefits are a win-win. Keep the faith that your child will resolve in the cast and I will keep you in my thoughts. Chin up! - Noelle's mommy, 2 1/2 years old and in 8th cast from Rochester NY, reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III Subject: HiTo: infantile_scoliosis Date: Sunday, September 27, 2009, 6:39 AM My son got his first cast 4days ago.I feel so bad I know it's for the best but it's terrible seeing your baby in a cast.do these things really work?I feel so lost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2011 Report Share Posted May 13, 2011 Hi thanks for the encouragement. I got the X5 on ebay. I have posted a short message about my aims and targets, have a look if you have time and any suggestions would be great. john > > > > > > Hi everyone, just joined the group today, after purchasing a bullworker last weekend. > > > Hope to get involved and keep you all up todate with my progress. > > > regards > > > > > > > > Welcome.good luck with your endeavours.You will find this a very good group.ED > > > G,day john good on you mate what model did you get! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2011 Report Share Posted November 10, 2011 Sorry I forgot to mention my name is LaLa. I live in West Palm Beach, FL. I am35. I could've had this problem for awhile for all I know and just didn't have symptoms. I am not working now, got fired from missing so many days b/c of being sick :-(. Could not afford Cobra and so I have this limited health plan with Blue Cross Blue Shield. Doesn't cover any outpatient procedures. But it helps with going to Dr and labs. I am so stuck between a rock and hard place! Should I talk to my Dr. about going on a potassium sparing diuretic even though I have low potassium levels. My BP is worrying me. Re: Hi Hello and welcome! Where are you? If you let the group know what city you are in we may be able to recommend where to go for treatment. Your story sounds so much like mine, and like many others here... Erroneous psych diagnosis, resistant BP, and low potassium. My diagnosis took ten years, and I finally had my adrenalectomy last month, and I feel better than I've felt in... well, at least ten years I had to do the three day salt loading test also. Not pleasant, but it shouldn't be anything to worry about. Expect headaches. You will then need a CT scan to see if there is a visible tumor. In my case there was, so the next step was adrenal vein sampling (AVS). I had to repeat AVS a second time before they got it right. This will determine if you are a candidate for surgery. You didn't mention your age, but if under 40 and they find a tumor, they may recommend skipping AVS. I know all of this sounds really daunting - I remember at one point thinking " no way am I having surgery! " since I'd never had surgery before and I was terrified, but now I'm so glad I did it -msmith1928 Nulliparous female, 46, 5'3 " , 115 lbs, CT showed 1cm left adrenal nodule, AVS determined disease is unilateral, had left laparoscopic adrenalectomy on 10/13/2011. Low sodium, fructose- and grain-free diet due to hereditary fructose intolerance, lactose intolerance, gluten intolerance (probable celiac). > > Hi everyone, just joined. I do not know where to begin but glad I found this group. My symptoms started a year ago with mostly heart palps. Had every test done to my heart and even saw a GI specialist who found nothing. Was told I have anxiety and put on Xaxax. Ended up in ER more times than I care to say and it wasn't until my blood pressure skyrocked and my potassium dropped to 2.5 recently when my dr. checked my aldo level and my first appt. with an Endocrinologist was this week. She's having me load up on salt for 3 days and do the 24 hr urine. In the meantime I feel horrible and when I go to my primary dr. on Monday I have to talk to him about my bp b/c it still runs high. I'm tired, sick, alone and scared and my insurance is very limited. Afraid of needing a ctscan, mri,some type of procedure or surgery and not being able to have it done. I'm sorry this is long but I feel like I'm slowly dying... please help! > Quote Link to comment Share on other sites More sharing options...
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