Guest guest Posted September 4, 1998 Report Share Posted September 4, 1998 Hello, My name is Geri. I am married with one beautiful daughter. I joined this list., so I could find support from others who do not vaccinate. I have to admit. I have had sierra vaccinated. she is due to some more shots now. But I just can not continue with them. It is like playing russian roulette with my baby. When I was getting her shots. The night before I would have them done. I would be sick to my stomach. And almost ready to cry. for fear something bad was going to happen. Luckily nothing ever has. Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1998 Report Share Posted September 28, 1998 Dear Rege, and other new members - all 14 of us so far, I don't have any personal experience with supplemental or alternative therapies myself Rege, but I am sure that someone on our list does and can comment. As I mentioned in my intro, I have had P for 28 years and PA for over 20 years. I have vasculitis and Sjogrens as well. For meds, currently I am using Imuran, along with a bounty of other meds like Ticlid- a blood thinner, and others too numerous to mention. Up until three weeks ago, the Imuran had kept me in a summer long " remission " I increased my Imuran dose from three to four a day two weeks ago, and the doc says it takes up to six weeks to know if it will help. This time around the sed rate is only 38, C-Reactive protein is 25- ouch! The joint pain is the shoulders, elbows, right hands and fingers, and neck- really bad, The psoriasis has screwed up my right hand pretty bad - and my right hands fingers are like bulging sausages, with bleeding cracks - yuck! I have had a vascular headache pulsing the top of my head since Friday - it is fading finally. Had a lot of N & V going on on Saturday and Sunday to go with it - Luck y Me! Well, I made it through the weekend, got the kids off to school safely, with hair combed teeth brushed and three homemade lunches!! Yay! I did it! Now I can shower up, and lie down all morning if I want with my little baby " Shorty " my ten pound mini doxie dog on my lap - his and my favorite place to spend the morning- together, Lets here some more introductions to our other new members - welcome aboard all- and feel free to invite any PA friends to join us too, please. Sending healing thoughts your way and God Bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1998 Report Share Posted November 14, 1998 Marie >Hi, >I was diagnosed with Hep C about 15 months ago. The best I can tell, I got >it from a blood transfusion in 1979, so I guess I've had it almost 20 years. >I just got off of a 9 month treatment with interferon. The interferon >started causing thyroid problems. Now I'm taking thyroid medicine. I was >still in remission 2 months ago. But, I'm sure the virus is just lurking >somewhere in my bloodstream. I'm glad to find a list for info and support >on Hep C. I know it's good to have someone to talk to that's been through, >or is going through, problems with the virus or with the Interferon. >Anybody out there tried the new Rebetron combination treatment? >Marie > I have a new friend with Hep C that got it from a blood tranfusion in 1977 but only got her diagnose 2 years ago. She was on a course of interferon last year but took herself off it after a month as she was feeling so awful. This year, 2 1/2 weeks after using a couple of the special nutraceutical products, her doctor took some blood tests as she was due to start a clinical trial with new drugs along with interferon. When she checked at the end of the week for the results, her doctor said her tests results were good as were her liver enzymes. He told her he just wants to see her in 6 months! She feels great with lots of energy less than 3 months of using the products and now feels she has a future to look forward to. I can send you a copy of a published case study: Hepatitis C - Changes in Serum Liver Enzymes After Dietary Supplementation . Regards, Jeannette Leduc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 1998 Report Share Posted November 18, 1998 > Date: Wed, 18 Nov 1998 01:33:18 -0600 > From: " G Murray " <GlendaMurray@...> > Subject: Re: SBOs and SOBs > > Has anyone tried colloidal silver? I have talked with people who use it > as > ear drops and clears up most infections within days. I'm not sure if it > is > candida, but cs is supposed to be good with candida > > Glenda > p.s. what is SBOs and SOBs? [, 7929] ****** Hey, Glenda! I have my own " generator " to make colloidal silver, which I bought from Silver Solutions (www.silversolutions.com, I think). It's so simple that anyone can make it with parts from Radio Shack and a soldering iron - except for, of course, the .999 pure silver wire itself, you'll have to get somewhere (a jeweler?) I use the stuff around 3 - 4 times a week; I had no infections to clear up, I guess, as the results weren't dramatic. Haven't had any colds for the longest time, though - maybe I'm just not around enough sick people. I think the stuff has a function - it probably does activate / reinforce parts of the immune system, through whatever mechanism. I have sprayed it in my kids' throats in the winter to help keep them healthy, with mixed results since they mostly don't use it unless I spray it, and I'm not that organized EVERY morning before school. Still, CS seems to help with some things - and it's a whole lot cheaper to make than to buy. The local health-food store sells CS for around $8 an OUNCE - I can make it for less than a penny an ounce. Oh, by the way - making the stuff is a neat, easy way to assay the WATER. If you use tap water or " ordinary " bottled water, you'll get a " sludge " in the bottom of the glass from the electro-chemical side reactions. Silver will react with chlorine, fluorine, various impurities in the water and make precipitates. I buy this stuff called " H2Only " from Kroger for $0.60 / 20 ounces - they say they do Ion Exchange, activated carbon filtration, Reverse osmosis and Ozonation, then UV sterilization on the water. It leaves just about NO precipitates when I make CS with it, and I think it must therefore be VERY clean water. Sorry for the sermon, but I thought your " Inquiring Mind " might want to know! Thanks! james Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Wow it is digest number 1 I am in at the very begining!! Well lets get this ball rolling!! ---candidiasisonelist wrote: > > > Did you know that we have over 85,000 e-mail communities at Onelist? > > Come visit our new web site and explore a new interest > ------------------------------------------------------------------------ > By reading these messages you agree to hold yourself FULLY responsible FOR yourself. > Do not use any ideas found here without consulting a medical professional, > unless you are a researcher or health care provider. > The things you will find here are for information and research purposes only!!! > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 I understood the description of the list to be just discussion on DTT. Only one of the posts in four was about DTT. I just need to understand. The problem is that if I belong to multiple lists, they tend to repeat all the same news, so I get alot of redundant information to weed through. I would prefer this list just have information on DTT: to stay focused. It is not my list, however, so it is the listowner's decision. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 , YES it will be only. The problem is that I invited FEAT of California to join but what I meant to do was have them send out the information about the new list. I will be removing them from the list... sorry for the inconvenience.... Please work with me... I am new at all of this... Rhonda Miga Parents and professionals are finding that BOTH Discrete Trial Training (DTT)and Natural Environment Training (NET), together with the help of Skinner's (1957) Functional Analysis of Verbal Behavior to be very effective for children with autism. This list group was designed to discuss the teaching approach. It is a place where parents and professionals running home programs can discuss concerns and share their knowledge of this type of teaching. Join today. Send an e-mail message to: -subscribeonelist VISIT Families for Early Autism Treatment -North Texas' (FEAT-NT) website! www.flash.net/~sjapollo/featnt bbird098@... Re: [ ] Digest Number 1 > From: " Day " <gooddays@...> > > I understood the description of the list to be just discussion on DTT. Only > one of the posts in four was about DTT. I just need to understand. The > problem is that if I belong to multiple lists, they tend to repeat all the > same news, so I get alot of redundant information to weed through. I would > prefer this list just have information on DTT: to stay focused. It is not > my list, however, so it is the listowner's decision. > > Thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Day wrote: > > > I understood the description of the list to be just discussion on DTT. Only > one of the posts in four was about DTT. I just need to understand. The > problem is that if I belong to multiple lists, they tend to repeat all the > same news, so I get alot of redundant information to weed through. > I agree, I am now on three lists that post Lenny Shaffer's FEAT bulletins- could we maybe forego those on this list? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Hi all Well, this is weird- the time I actually received the digest was 9:22 AM, EST, but the time it is marked " 2:22 PM " (today, Jan 25). Odd, eh? I also got two posts of the old list this morning- for Jan 23 and 24. Oh well... Better later than never! Just a brief note- PB saw this child psychiatrist yesterday. She spent half an hour reading over ALL the stuff I gave her, while PB happily played. So PB and I were both very relaxed by the time we met with her. She was very kind, and gave me that 100% attention, with no sense of " You're getting just so much of my time " . PB was unbelievable perfectly behaved. Which made me feel good for him but also happy that she was paying attention to his history. She was very interested in the DS/Autism issue of DS, and I did actually mark up that list of meds from Medline. My goodness, that was helpful in organizing my thoughts and questions! She was happy that I knew where she was headed with her recommendations, and yes, she did recommend Respirodal. Happily, our ped. and I had figured that was next. It just makes me feel reassured that we are all on the same page. I called our ped. last night and he spent another 20 minutes or so reviewing the psych's visit. I am concerned about possible weight gain, and he also talked about possible agitation (along with the sedating effects). So, we are going to start this. Thanks all for all the input about Resperidol. (sp?) I feel less anxious going into this because I can be on the lookout for the side effects. Well. kids- got HUGE amounts of laundry piling up. Blecch. I have been on a bread baking and soup making thing with the cold weather here, and that has kinda gotten in the way of the other stuff. Now you're all talking about these bread recipes. HHHMMMM- wheat or no, you're puttin ideas into my head about trying out some things!! HAHA Later, all! MB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 I might suggest that anyone who is troubled by receiving too many emails go to www./mygroups , and change your subscription to daily digest. You will then receive one long email each day (if there are any postings), rather than individual emails each time one is posted. I find this to be much less intrusive. Steve Weinman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 Hi, I'm Wagner. I had my first scoliosis surgery at age 30 in 1981 with Dr. Tolo. He used a 14 inch Harrington Rod which did break a8 months after surgery. I was in terrible pain but Hopkins kept xraying and saying nothing was wrong. When the rod began to poke through my skin they exrayed from the side and found the problem. That rod came out and I got a small compression rod at a site of nonfusion. Twenty years later, I have tremendous flatback. I lean way over, am having trouble standing for any lenght of time and get a fatigue type pain in my upper back. I too am becoming disabled though I won't admit it. I guess the only choice is surgery but does it work? I've only seen negative posts? I want to keep working and living my life! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 I have heard both good and bad about revision surgery. There is another choice though. I was forced to make it mine. My doctors don't think I am a likely candidate for further surgery. So I have had to come to grips with my disability and accept it. It hasn't been easy. In fact I think its a daily struggle at times but it can be rewarding. Despite the pain and all the associated miseries I can honestly say I am happier now than I have been in a long time. The reason is simply that I have time now to do all the things that I didn't have time for before. By slowing down my life somewhat I think I can now take enjoyment in the simpliest things. I know it is not easy but when faced with a choice of being happy or miserable I found that I preferred being happy. It requires less energy. I have a routine that helps. I do a bit of reading, a bit of watching television, a bit of model making, walking, light exercises, etc., etc. I revolve from doing a little of one thing to another all through the day. At the end I have accomplished a lot and I am not as sore as I would have been if I had stuck to any one task for too long. And reading and learning new skills keeps the mind from turning to oatmeal. Which believe me is important. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 Hi Mscello... I know dozens of people who have had excellent results from their revision surgeries. Since these people tend to get on with their lives, they're unlikely to post to lists such as this. I know it's got to be a very difficult decision to submit yourself to surgery when you know what you're up against. Only you can make the decision. You have to decide if you can live with the pain you have today (it's unlikely it will ever get better), or if it's bad enough to have more surgery. I wish you luck with whatever you decide. By the way, I was unaware that Dr. Tolo did surgery on adults. I thought his practice was limited strictly to children. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 Hi!!Thank you for the kind Email It is nice to know that there are others out there.I wish you all of the luck in the world with the fertilitiy problems..I am not old enough to understand that but I definitely know the earlier stages of infertitly. Thank You again and I look forward to any gathering of this Club:D --- blepharophimosis wrote: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 Hi again! I have some information if it can be of any use to you or others. First, we did not find a lot of info on internet about bleph. We ended up somehow on the OMIM site where there is a good lot of info. Concerning eye surgery there is info at: http://plasticsurgery4u.com/proce...econ_folder/blepharophimosis.html http://www.stepstn.com/cgi-win/nord http://www.kumc.edu/gec/support/blepharo.html http://www.eyeplastics.com/ http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome065.html http://orphanet.infobiogen.fr/ It would be nice to have the most people we can get in that community and exchange information on a more frequent basis. So, I invited to this group, other people that have Blepharophimosis that I met on the internet. Hope they will be joining us soon. As you might already know, Bleph is a rare genetic mutation and there are no apparent reason for it. It is like other genetic mutations, it happens for no particular reason. There is a 50% chance of transmitting it to children when you have bleph, but since there are some big fertility problems for women with bleph, usually, it's only men that will transmit it. Women being incapable of getting pregnant. For my wife's family its her grand grandfather that started to transmit Bleph. That is why she's not the only one in the family to have it. We know that other families in Canada happen to have bleph, and that numerous people in the USA have it to. We might have some more information on the subject, but it will be related to the infertility problems. Have a nice day! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 HI FAMILY FOR SOME REASON MY MAIL IS COMING TO THIS ADDY INSTEAD OF TMUR4. I AM SO GLAD THAT THIS GROUP HAS STARTED AND HOPE THAT IT LASTS FOR MANY MANY YEARS. I'M GLAD TO BE BACK WITH YOU ALL. TERRI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Hi Terry, Boy that is weird.... Did you ever use that addy???? I sometimes get other peoples mail and thought that was strange..... Love, Light & Faith, Angel Hugs, Diane Angels protect & guide us in our journey thru life!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Hi Terri. As long as it gets to you! How are you doing? I think my energy level is a little better lately. My itching legs are driving me up the wall, I guess some things get better and some worse. Must be the hepc biorythm. -dz- > HI FAMILY > FOR SOME REASON MY MAIL IS COMING TO THIS > ADDY INSTEAD OF > TMUR4. I AM SO GLAD THAT THIS GROUP HAS STARTED AND > HOPE THAT IT LASTS > FOR MANY MANY YEARS. I'M GLAD TO BE BACK WITH YOU > ALL. > TERRI > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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