Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 Welcome Suzy, This is a good group. Feel free to ask anything! Take Care, Gaylen >From: suzy <sushe@...> >Reply- > >Subject: [ ] I'm new >Date: Sat, 01 Feb 2003 12:07:32 -0600 > >Hello, > I want to state at the outset that I do not have cancer far as I know >although I am at higher than average risk. >My best friend died 2 years ago from cancer treatment; I am very >interested in alternative cures. If I am not welcome please let me know >and I will >unsubscribe. Best Wishes to All, Suzy > _________________________________________________________________ The new MSN 8: smart spam protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 Welcome Jen, I am debby and I was dx with AIH July of 00. Much information is here, but I warn you, be careful with the herbs. Many are toxic to the liver....just be careful! Debby [ ] I'm new Hi, I have recently been diagnosed with autoimmune hepatitis. I saw a liver specialist, but most of what I know about AIH is what I obtained over the internet. I am joining this group in order to share stories, treatment plans, alternative medicine ideas, etc... I live in Canada - anyone else in the group from Canada? Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 >>She is having me rotate between Culturelle and ProBioGold every other month. Which one should I start with? It might not make a difference. Just pick one. Are you rotating one bottle at a time, or giving some Culturelle and some PBG each day? . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 > I am not as aware as I should be. AND I will be sure to get more information, I feel like such a dork. > , Do you think that all of us weren't in your shoes when we were first diagnosed? We have all learned, just as you have, that we needed to ask more questions. We have learned to request copies of all of our tests, etc. You are not a dork; you are a person who has been raised to respect everything a doctor said, just as all of us were. Now, you know that you need to be an advocate for yourself and your health and that you need to be more assertive about your health and treatment. Welcome to the group. Post as often as you feel comfortable. (in WY) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 In a message dated 25/3/03 3:22:30 pm, ewsockey@... writes: > > 1. Is it useless to begin using enzymes if we are not also doing the > complete gfcf diet and/or chelating at the same time? If so, I give up. I > can't afford it, and at this point don't have enough faith in it to make > that kind of effort. > No, you can use enzymes even if not doing GFCF or chelation. In fact, many people use the enzymes so they dont' have to do gfcf. Chelation is a different matter. > > 2. If anyone out there thinks it is possible for some people to get good > results with enzymes alone, could you please advise me about the easiest, > simplest products to start with? I understand that one must be willing to > experiment and try different things, but if someone could tell me what is > most tried and true, or easiest to get a child to accept for starters, I > would appreciate it. I just need a starting point. I would also be willing > to try a limited dietary intervention along with the enzymnes e.g., cutting > down on gluten or casein, but not totally eliminating, if that might help. > > I like the Houston enzymes, which you undoubtedly have heard about by now! > Please don't tell me that I should be willing to do more (and spend more) if > a truly wanted to help my child. What little money we have is going where > we know it actually has helped--speech therapy and ABA. The few > alternatives I've tried so far haven't helped, and thus I am skeptical. > Well, enzymes aren't so expensive to try. I dont' think you can hurt a person with enzymes, either, which is a plus! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 thank you! [ ] Re: I'm new > I am not as aware as I should be. AND I will be sure to get more information, I feel like such a dork.> , Do you think that all of us weren't in your shoes when we were first diagnosed? We have all learned, just as you have, that we needed to ask more questions. We have learned to request copies of all of our tests, etc. You are not a dork; you are a person who has been raised to respect everything a doctor said, just as all of us were. Now, you know that you need to be an advocate for yourself and your health and that you need to be more assertive about your health and treatment.Welcome to the group. Post as often as you feel comfortable. (in WY) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 Hello, > 2. If anyone out there thinks it is possible for some people to get good > results with enzymes alone, could you please advise me about the easiest, > simplest products to start with? I understand that one must be willing to > experiment and try different things, but if someone could tell me what is > most tried and true, or easiest to get a child to accept for starters, I > would appreciate it. I just need a starting point. I would also be willing > to try a limited dietary intervention along with the enzymnes e.g., cutting > down on gluten or casein, but not totally eliminating, if that might help. We use Houston enzymes. Our story is at www.enzymestory.com. Start only one enzyme at a time so you know what is working or not working. You may find you have to eliminate some foods, even with enzymes. I would start with Zyme Prime first, gradually add Peptizyde, maybe No-Fenol. Then, if needed, try removing any foods that might be a problem. > Please don't tell me that I should be willing to do more (and spend more) if > a truly wanted to help my child. Well, there is an article in the current issue of Autism Digest that states something like that. And then the person tells you to read her diet book. (Oh, and the author warns you about enzymes!) What little money we have is going where > we know it actually has helped--speech therapy and ABA. The few > alternatives I've tried so far haven't helped, and thus I am skeptical. Good to be a little skeptical, neither enzymes nor diet help everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 > Dear Daria, I did the GFCF diet STRICT for three months last summer. Everything from the special toothpaste to Burts Bees Insect Repelent. Nothing except a trip to the ER which turned out to be severe constipation. But there are some people at her special preschool which have had excellent results, so I am glad we did try it. Enzymes are SO MUCH CHEAPER! It is worth a try. We use the AFP (which is the same as Pep but odor and tasteless-important for us) from Houstons because I had read the most positive resilts from parents using this brand. Slowly we saw change in the first month, and now we are into about the 2 1/2 month mark and she has improved greatly. Her speech, eye contact, and meltdowns(which frustration over speech caused) have improved so much. We had her end of school year conference today and her teacher said the change in such a short amount of time had to be linked to the enzymes. She has been her teacher for three years so I value her opinion in this respect. Other staff in the room have been coming to me about how well Cassidy is performing in the classroom and that some days you can not tell her apart from the typical kids (her class is half typical, half special). Thge enzymes are costing me maybe $30- 40 a month are so-one speech session costs more than that! No one therapy works for everyone, but I felt the cost made this worth trying. I believe it helps her other therapies(speech, OT, cranial, TLP) work better. Good Luck to you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 >>>> Well, there is an article in the current issue of Autism Digest that states something like that. And then the person tells you to read her diet book. (Oh, and the author warns you about enzymes!) I haven't seen this article but it sounds like the author may be a bit jealous, or excessively defensive, of those using enzymes. It's really too bad that someone is not happy enough with the course they have chosen or can't be happy that children, and adults, are getting remarkably better with a different course. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 My 2 cents >>I don't have easy access to a DAN doctor, > which makes it harder to know what to do first with all these alternative > therapies. Most of the DANs don't know the alternatives either. It is good you are doing your own research. >>We tried the GFCF diet for one month in September. I know that many > say we should have tried a longer time. However, after not seeing the least > shred of improvement, and finding the diet to be burdensome and expensive > for my large family, we quit. We are already on the Feingold diet, which we > do find makes a difference. Feingold addresses phenols. You might find ideas on this page to help you further with those issues. http://www.danasview.net/phenol.htm > > Last month, developed encopresis (aggravated constipation). Did you do anything different that you know of, in the last month, that might have triggered it? > > 1. Is it useless to begin using enzymes if we are not also doing the > complete gfcf diet and/or chelating at the same time? No. Many people do just enzymes. Chelation is a different subject, here is my info page http://www.danasview.net/chelate.htm > 2. If anyone out there thinks it is possible for some people to get good > results with enzymes alone, could you please advise me about the easiest, > simplest products to start with? If you are not gfcf, HNI is recommended http://www.houstonni.com/ You can also consider Kirkman http://www.kirkmanlabs.com/ Start with one product at a time, so you can tell if it is helping, not helping, or your child reacts badly to it. > to try a limited dietary intervention along with the enzymnes e.g., cutting > down on gluten or casein, but not totally eliminating, if that might help. My experience is that you start with enzymes, let things settle out, then find out what other foods you might need to restrict or eliminate. For my kids, they still must stay away from certain foods, but not gluten or casein. > Please don't tell me that I should be willing to do more (and spend more) if > a truly wanted to help my child. People who say that, are unrealistic and generally have a particular theory in mind that they want you to buy into. Treat guilt trips with major suspicion. >> What little money we have is going where > we know it actually has helped--speech therapy and ABA. This sounds reasonable. The few > alternatives I've tried so far haven't helped, and thus I am skeptical. Skepticism is always a good thing. Just do your own research and gather information until YOU are convinced that an idea is worth trying for your child. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 The enzymes would be the way to go. Our son was on a gfcf diet for two years before we found the enzymes. We noticed a definite progression towards an intolerance to other foods and so now we are really grateful for the enzymes, otherwise we'd all be eating potatoes and chicken only. I'm new Dear Group, Thank you for the introductory information, but I am overwhelmed by it all, and thought that if I presented my situation to the list, I could be given some pointers on where to start. I don't have easy access to a DAN doctor, which makes it harder to know what to do first with all these alternative therapies. is 6, moderate to high functioning. He has NOT had a history of digestive or bowel problems, or ear infections, or antibiotic use. He only had the usual language/behavioral/educational problems associated with autism. We tried the GFCF diet for one month in September. I know that many say we should have tried a longer time. However, after not seeing the least shred of improvement, and finding the diet to be burdensome and expensive for my large family, we quit. We are already on the Feingold diet, which we do find makes a difference. Last month, developed encopresis (aggravated constipation). This may simply be because, unlike an NT child, he did not tell me he was having a problem defecating, and so things went on for weeks until I figured out what was going on. OR it could be that is predisposed to this because of gut/bowel problems that many autistic children have. I just don't know. But it does make me want to investigate the leaky gut theory again. Now for my questions: 1. Is it useless to begin using enzymes if we are not also doing the complete gfcf diet and/or chelating at the same time? If so, I give up. I can't afford it, and at this point don't have enough faith in it to make that kind of effort. 2. If anyone out there thinks it is possible for some people to get good results with enzymes alone, could you please advise me about the easiest, simplest products to start with? I understand that one must be willing to experiment and try different things, but if someone could tell me what is most tried and true, or easiest to get a child to accept for starters, I would appreciate it. I just need a starting point. I would also be willing to try a limited dietary intervention along with the enzymnes e.g., cutting down on gluten or casein, but not totally eliminating, if that might help. Please don't tell me that I should be willing to do more (and spend more) if a truly wanted to help my child. What little money we have is going where we know it actually has helped--speech therapy and ABA. The few alternatives I've tried so far haven't helped, and thus I am skeptical. Thank you in advance to anyone willing to share their wisdom. Daria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 The post worked...let us know about you. > I'm new to a lot of this and just joined (or I thinkI did, anyway), so could someone let me know if this post worked? Maybe just the moderator could answer the message. If this is working, then I will post more about my condition (if that's OK). Thanks. > > rausili@q... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Hello , A warm welcome to and congrats on your decision to be implanted. I'd like to say that you can't go wrong with any of the 3 brands of implant. It all boils down to a personal choice of the one that fits your lifes needs the best. There are star users in every group.. those who hear well right from the start, those who have to work really hard to achieve results, and those who fall somewhere in between. I have the Nucleus 3G as do 3 other members of my family. The 3 of us who were implanted within the last year and a half hear wonderfully on the phone, including one sister who was deaf for 30+ years.. She's the most recently implanted, and has made great advances from hearing virtually nothing for years. I did well from the start.. hearing at 98% right of the bat as did my other sister who shared the same surgery day. I have a friend who was implanted with the Med El and she also does well on the phone and with speech I've not actually met anyone who has had the Clarion implanted recently, but there are many here who also are doing well with those. Bottom line is.. the one you have is the one that works the best I say, do your homework, talk to ci users and base your decision on what you want. Please feel free to email me for anything.. either privately or on the forum. There are a few people on here who had sudden deafness as you did too. Hope you enjoy your stay here; I'm sure you'll be well versed in ci's by the time you have surgery. <smiles> Regards, Silly in MI N24C now wearing 3G bte bilateral hereditary progressive nerve deafness In , " sing2phins " <sing2phins@y...> wrote: > Hello everyone . .. My name is ; this is my first post, but I > have been following along for about a month now, and I decided to > finally introduce myself. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Hi , Like Silly , I want you to know how glad we are to see you here and happy for you that you are going to be implanted. It's a time filled with mixed emotions of curiosity, excitement, anxiousness and yes fear but for the most part, the more difficult things are strongly outweighed by the wonderful quality of life that is gained by enduring the " hard parts " first. Choosing which brand is a very confusing part of this process as you want to get what is going to work and how can you know without trying it first. Well... all of the implants work and work extremely well. All of the implants users are reporting very good phone use and excellent speech understanding. Some of each are reporting excellent experiences with music. Those that are happy with their newfound sound are extremely happy and will tell you that their type of implant is best but researchers who are studying the various brands are finding them very much equal in success rates. You should make a list of the things that you want from your implant. Next to each priority, note which one offers you what you are looking for. You want to be sure it offers this now and not someting that is promised in the future because not all intended upgrades happen. When you complete your review, see which one has met most of your priorities and when you do this, you will have chosen the one you want. I guarantee you that it is going to be the best one because it is yours and it is going to give you back what you have hoped for. When you make the choice, don't look back. Don't let others try to tell you it was the wrong choice because there is no way they can know this. If they try to sway you one way or another and you are not happy, you are going to blame them. This decision needs to be yours and yours alone. Quite frankly, I would feel terrible if I tried to convince someone to go with an implant type and they ended up unhappy with it. I feel very confident though that you will be very happy with the one you choose. PS - I hope your shoulder heals fast. It must be hard to manage without it. Let us know what you decide and no matter which one, we will be very happy for you. Alice N24 11/99 N24C 04/03 Bilateral > Hello everyone . .. My name is ; this is my first post, but I > have been following along for about a month now, and I decided to > finally introduce myself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Jane -- I have been dealing with this for almost 2 years and I don't think it gets easier but I have come to terms with it and have learned to accomodate it. I make whatever concessions I have to so that I can continue to live the most normal life possible. The pain is constant, the stiffness is really annoying and the meds all come with their own set of problems but there are a lot of coping measures and I use whatever I need and don't apologize for it. All the people in my life are very supportive and I recently realized that is because.............if they are not supportive they are not in my life. We teach people how to treat us. Anyway, Welcome to this site and I wish you the very best luck with learning to live with this disease. It can be done! Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 --..yet, all I got was grief from the other musicians. They > have no idea that it hurts and that I am too exhausted after working > a 9-hour day to enjoy making music with them. > > his ever get any easier? I'd appreciate any advice that can be > sent my way. Thanks. Jane Hi Jane, Welcome to the group! Glad you stumbled on it. First- I really can empathise with you and your music. I was forced to give up a career as a pianist. Hard when the music is still in you and the hands won't cooperate. I am guessing you are a good trumpet player and that is why you are getting grief about not playing with your group. I don't know why people don't get it. To this day if I go home people insist I play for them (MY hands are extrememly deformed now so it is strange- you'd think they could look at me and be able to see no way) I guess you could explain that you have a systemic, autoimmune illness and besides it affecting your hands it causes bad fatique. Some will get it: sorry to say some never get it! Anyway- yes it gets easier. The flares can be up and down so the pain is not always at a severe level which helps. I think we also learn strategies to cope and also gain some acceptance of the disease with time. Glad they got you on Enbrel-of course the big hope of the biologics is they will help to prevent permanent damage. Please don't be scared about my own story with deformed hands-I have a rare subset of PA-have had it 35 years and didn't have the treatments available today. Many people never experience any permanent damage. Where do you live that you have to put up with long snowy months? I live in Nebraska, USA. YES-it gets easier. Best of Luck! Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 mlw402 writes: <<I have a rare subset of PA-have had it 35 years and didn't have the treatments available today. Many people never experience any permanent damage.>> Marti, How long was it before you got the permanent damage in your hands? I use to have sausage digits that were not usable, then they went away after a few years. The pain completely went away for awhile, and now I have a dull achey pain that won't go away. I have full use and very little (possibly even no) deformity. What was going on when your fingers started deforming. Was it just pain and one day they appeared deformed? Did it happen slowly? I have always wondered this, since several of my fingers are affected. Thanks for your insight! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 > mlw402 writes: > <<I have a rare subset of PA-have had it 35 years and didn't have the treatments > available today. Many people never experience any permanent damage.>> > > Marti, > > How long was it before you got the permanent damage in your hands? Hi , The short answer to this question is that the damage has developed slowly over many years. I had signs of permanent damage in my feet within several years of my PA diagnosis. The toes appear shortened. It took Rheumies awhile to figure out if this was PA ot just short toes. Unfortunately, it was PA. My hands were spared of permanent damage for about 10 years. Fingers would swell and hurt intensely, then be OK (relatively) for awhile. Then an index finger swelled and I was unable to move it even after the swelling let up. Turned out the bone had grown over the joint. I can feel it-it feels like bone. This has happened to both my wrists (autofused) I imagine they have swelled real bad and hurt real bad 10 or 11 times. So it also happened slowly over time after a series of swellings. I also have missing joints.(Bone has been eaten away). The worst of these are my thumbs and I really can't recall having that terrible intense pain much there(although I could have forgotten). I believe some of my damage goes on whether there is swelling or not. The Rheumies disagree with me but this is my experience of it. Inflammation is under control from Meds but damage continues. Comparing x-rays shows this. I hope this helps-I guess if I learned anything I could pass on it would be to be aware, whether through x-raying or your own knowledge of movement in fingers,etc. I also wish for myself I had tried Cyclosporine and MTX when it was first offered to me and was still very controversial. I was scared of side effects and it was thought that PA could not get as severe as it has for me. I tried numerous alternative diets,etc throughout my 20s and I guess they didn't work for me. Again, I want to stress that they tell me I am an unusual case (about 5% of people with PA develop the mutilans subset) Also,even my conservative Mayo Rheumy says that he won't be seeing people like me now that the biologics are available. I still say the jury is out on that-maybe I should live in Missouri...They are the ShowME State. I also wonder sometimes about the statistics and classifications of mild to severe PA. Seems like many people do get more severe symptoms than is generally recognized for PA. If You're still with me Tiff I know you are in your 20's and the med decisions are difficult. I believe it is easier for me now that I know I won't be having children to make these decisions. I also have been around long enough to see big swings back and forth in the use of cortisone,MTX,Cyclosporin,etc. As one Doc told me...You know we change our minds every ten years. I support you in your Quest to find the right treatment for yourself! Take Care! Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 > as a " bulging disc " after an MRI. A surgeon told me that " fusion " > would be the only surgery he would do but only as a last resort. > Could this be PA also? Jane, I cannot answer the question but definately interested in the subject as I was also recently diagnosed with a bulging disc after an MRI. Mine is in my neck. I intend to talk to my rheumy when I see him on Friday. I see a neurosurgeon on Tuesday. One good thing is the two doctors probably know each other as the neurosurgeon's office is just above the rheumatologist's. Would have been great if the appointments had been the same day as it is a 62 mile trip! Lorna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 In a message dated 6/10/2003 9:23:31 PM Eastern Standard Time, mlw402 writes: > I support you in your Quest to > find the right treatment for yourself! > Take Care! > Marti Thank you Marti. All of your progression sounds very similar to where my pains are. My toes are the only place I see any damage being done, and it's only in one foot. I do have one toe that is a " hammertoe " . My ankler (left only) and fingers are the other places that are really scaring me right now. Although they don't have a lot of inflammation, I feel that acheing dull pain in them MUST be causing damage. I have an appt. on Friday for my one year X-rays, so we shall see. It's kind of strange... when I had inflammation, there was no damage, but I truly feel now that the inflammation is gone (which I am assuming was protecting the joints) my joints are being eaten. If he finds damage this year I will move on the the Biologics. I don't think I have much of a choice. Thanks for your empathy! I truly appreciate it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 In a message dated 6/11/2003 6:32:46 AM Eastern Standard Time, janekarsten@... writes: > Thanks also to the nerve blocks, I had one day last > week that was absolutely pain-free. I had forgotten > what it was like! How do nerve blocks work? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 In a message dated 6/11/2003 10:22:41 AM Eastern Daylight Time, janekarsten@... writes: > (course, > that could also be due to the fact that I had a nerve > block yesterday and spent a majority of the day > stretched out on an ice bag Jane, Can you tell me something more about the nerve block? How long does it last for and where do they do it? I would also like to know what part of the body it controls the pain in. I think a few days of no pain is worth it. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 I'm getting nerve blocks (combination of steroid, anti-inflammatory, and pain med) in my spine as pain relief. Tried PT, some arthritis there, but MRI shows two bulging discs. The last injection made my legs numb, difficult to walk, but I have had relatively no pain for a week now except in my hands and left foot. I get the third shot in two days and then that's all they can give for atleast six months. Dr said last week that it could relieve back pain for up to two years and I'm liking that idea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Hi .. Welcome to the group. It sounds like you have congenital scoliosis. Regards, On 8/28/03 11:18 AM, " AdirondackBlair@... " <AdirondackBlair@...> wrote: > Hey I'm new to the group. I have scoliosis. I have had it since I was born > and I'm 16 years old now. Does anyone else on this group have scoliosis in > which > your vertebrate is fused Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Dear , I think that most of us who have scoliosis are shorter than we would have been with straight spines. I barely hit five feet right now, but am told that I am really 5'5 " tall inside! That can be measured pretty well if you stand with your arms out straight at your sides (like you were an airplane) and have someone measure from fingertip to fingertip. At least that is how they did it with me in the hospital. And, don't forget that short girls can dance with any height boys, etc.! Don't worry about your height. Enjoy your life. An older scoliosis patient, Carole Quote Link to comment Share on other sites More sharing options...
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