Guest guest Posted August 8, 2000 Report Share Posted August 8, 2000 Ann, I took Arava for over a year. It didn't do very much for me. (But we can't find anything to help me right now). It has helped a lot of people who are now in a medicated remission. Good luck with it and welcome. Tery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Hi Ann, Glad that you returned to the list! ----- Original Message ----- From: rkolofer <rkolofer@...> < egroups> Sent: Tuesday, August 08, 2000 12:15 AM Subject: [ ] New to list > Hello everyone > I was on this list a while back but had to leave. I need some > help because I have just been confined to a wheel chair. > I have had Rhumatoid Arthritis for just shy of 30 years. > Today I went to the doctors and he wants to put me on a > new medication and I wondered if any of you were on it. > It is called Arava. Did some searching on the web but like > to know if anyone is using the drug. > I live in Cleveland Ohio and have been married for 36 years. > I have 4 daughters and 6 grandkids. > > Ann Kolofer > rkolofer@... > > > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Welcome back Ann. I haven't taken Arava, but have heard people say that it helped them. Hopefully any members that are on it will tell you their experiences. a ----- Original Message ----- From: rkolofer <rkolofer@...> < egroups> Sent: Tuesday, August 08, 2000 12:15 AM Subject: [ ] New to list > Hello everyone > I was on this list a while back but had to leave. I need some > help because I have just been confined to a wheel chair. > I have had Rhumatoid Arthritis for just shy of 30 years. > Today I went to the doctors and he wants to put me on a > new medication and I wondered if any of you were on it. > It is called Arava. Did some searching on the web but like > to know if anyone is using the drug. > I live in Cleveland Ohio and have been married for 36 years. > I have 4 daughters and 6 grandkids. > > Ann Kolofer > rkolofer@... > > > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 Welcome Denis, This is a great group to join as it shares all sorts of information and helps with the frustration of other people not being able to understand what the condition is about although they do try. I am 38 years old and I too suffer mostly in the legs with foot drop and general weakness. Sincerely P --- In egroups, " Denis Kaufman " <tmblweed@i...> wrote: > Hi, > > I am new to the list so I thought I would introduce myself. I am 49 years old, have been career Navy (ages 17 to 38) followed by eleven years in Civil Service. > > I was provisionally diagnosed with CMT about five years ago. The diagnosis was based on EMG results, medical history, and a physical exam. Since then my sister has had the blood test and is positive. I'm convinced. > > I have read quite a bit about CMT on the web and understand that this is something you just live with. There are things to do to mitigate the progression or severity, but a lot of the management is attitude and adaptation. > > I have a mild case that consists of legs that get tired easy, watching for pressure palsies, feet and ankles that seem to cramp up, and tingling fingers. I can tell that it has gotten worse over the last couple of years, but is still very tolerable and manageable. > > Denis > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2001 Report Share Posted December 8, 2001 What have you concluded, through all your research, on what we should feed our dogs? Shari ----- Original Message ----- From: multinewf Sent: Friday, December 07, 2001 5:07 PM Subject: new to list Hello, Would like to introduce myself to the list. My name is Bethanne Elion . I grew up " in the food business " meaning that my mother was a chef and taught cooking first in our home and then had a gourmet shop, cooking school and weekend restaurant under one roof. My mother and I had a mother daughter column in the local paper when I was in Junior High School (a zillion years ago!). I have been studying nutrition in relation to dogs for six years now thanks to my dear friend, Volhard who wrote The Holistic Guide for a Healthy Dog. I do nutritional consulting part time for dogs and still study everything I can get my hands on in regards to alternative medicine and nutrition. I had originally found Sally Fallon's book through my friends who own a lovely farm on the border of Vermont and Canada where they naturally rear their cows on beautiful pastures. They use mainly homeopathy and herbs for healing. I adore going there (a four hour trip each way). I work with them as well as an animal intuitive - one of my other part time " jobs " so to speak. I am truly very happy to have found this list. I consider myself an advocate for animal health and humans do fall into that category :-) Bethanne Elion Nutrition for Dogs Poultney, Vermont Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2001 Report Share Posted December 8, 2001 >What have you concluded, through all your research, on what we >should feed our dogs? >Shari Hi Shari - I basically follow the guidelines of Volhard's work (Holistic Guide for a Healthy Dog - best is the paperback edition) because it is based on tte Levy's work which is based on thousands of years of experience of gypsy folk and those who live close to the land. has basically brought it into the new century (hard to bury meat these days or hang it from a tree if you live in Brooklyn!) I have changed only one source because of my own beliefs in healthy foods ie the bone meal. I use a Canadian source for that but everything else of hers I follow. It is not stagnant . You follow the seasons ( five element) in using what is available for that time of year - root vegetables in Winter, greens in spring and that sort of thing. It honors the dog as a carnivore. She has over 30 years of clinical testing to show how the diet has balanced the dogs. tte Levy's books are all well worth having a look at too. She wrote several on cats, dogs, livestock and children. There is also a video on her that is absolutely magnificent and I highly recommend. It is called tte of the Herbs. Hope that helps!! -- Warm Regards, Bethanne Elion Volhard Nutrition List Moderator Poultney, Vermont Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Hi, I'm Kathy. I found this list a few weeks ago and have been lurking, but I thought I would take the plunge. I was diagnosed with RA in 1975, when I was 20. I've been on many different meds over the years, right not it's Tolectin, Plaquenil and Sulfasalazine. I kept working as long as I could, but finally went on disability 3 years ago. I've had wrist and ankle fusins, and my rheumatologst is now suggesting a hip replacement but the surgeon is reluctant to do it in someone my age. Has anyone else gone for the new hip and how have you done with it? Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 Dear Bryce and Ruth, Welcome to our group. NE Georgia must be nice this time of the year. Since both of you are experiencing health effects, it sounds like you have wisely narrowed the culprit down to your home. While older homes may be very well constructed they can also suffer from water leaks (especially when dishwashers are added later), leaks around the bath tubs and leaks from an older roof that is not well maintained. These days it would really pay to have an expert who is knowledgeable about mold go over a house before you buy it. It is good that you have been following the standard protocol of eliminating things one by one from your environment that might be causing your illness. The HEPA filters will help but they will not remove dangerous mold spores or endotoxins. There is a lot of information posted in our archives about how to go about safely remodeling and several of our members are professionals in that field, so feel free to ask questions if you can't find the answers you seek anywhere. Thank goodness you are wise enough to look for answers and take action before becoming seriously ill with brain damage or permanent health effects. Hopefully Ruth can convince her school to use safer products since children are so much more at risk than we adults. Sincerely, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Welcome. In my thoughts about all of this, it seems to me that the earth isn't the unfriendly one, it's the people who are quick to make progress and a profit without first seeing if what they are doing will injure others and themselves! Sure, it's great to provide housing for more and more people, but to treat wood so that it is toxic to people as well as insects, may limit one kind of damage to the house, but seems to cause years and years of illness and other damage to people. We as a society must find a way to use things like wood in such a way that we don't rely on chemical shortcuts so that inferior grades of wood can be used. I am sure this is an insanely complicated thing, but if the housing people are in and the schools that children are in are making people sick in the short and long term, then relaxed standards for building (and "better living thru chemistry") be damned! ----- Original Message ----- From: brycervics@... Sent: Sunday, November 30, 2003 6:49 PM Subject: Re: [] Re: New to list Dear Barbara, Thanks for the welcome! One of the problems of narrowing it down to our home is that we then either need to do something or decide whether to try to minimize it. Some things are so permanent and potentially toxic that one needs to move ASAP. All the obvious stuff is found with inspections and we had two done! But I after wards found stuff they missed!!!!! And now stuff I missed!!! I do have a background in building a number of homes, My father was a contractor. But none of that was real preparation for this insidious ailment of MCS etc. I loved the smell of fresh cut wood.....spent hours in Dad's millwork shop and ran a lot of wood through myself. So today when I find even a whiff of wood smell it sets off a reaction in Ruth. My own tolerance of what I was OK with has now become a big awareness. My "normal" desensitized nose is becoming sensitive. Likely from being away from all that! And living in a "cleaner" environment. So it does affect the so-called "normal" spouses! Ruth was employed for three months and during that time was affected severely by the toxic atmosphere there. She was not able to work after that. We then started a small Tutoring business that remains small since she cannot sustain many hours. 4 hours a week is a big week! We are unable to do more remodeling at this time since our funds are exhausted. We tried to make changes at the school(s) ... they are all affected by deafness!!! Our major task at present is to get Ruth's environment as safe as we can where we are! Education is wonderful...."The more we learn...the more we find to learn!" We are just a pair of God's Children living on this unfriendly earth! Bryce and Ruth On Sun, 30 Nov 2003 11:22:20 -0500 "Barbara Herskovitz" <bherk@...> writes: Dear Bryce and Ruth, Welcome to our group. NE Georgia must be nice this time of the year. Since both of you are experiencing health effects, it sounds like you have wisely narrowed the culprit down to your home. While older homes may be very well constructed they can also suffer from water leaks (especially when dishwashers are added later), leaks around the bath tubs and leaks from an older roof that is not well maintained. These days it would really pay to have an expert who is knowledgeable about mold go over a house before you buy it. It is good that you have been following the standard protocol of eliminating things one by one from your environment that might be causing your illness. The HEPA filters will help but they will not remove dangerous mold spores or endotoxins. There is a lot of information posted in our archives about how to go about safely remodeling and several of our members are professionals in that field, so feel free to ask questions if you can't find the answers you seek anywhere. Thank goodness you are wise enough to look for answers and take action before becoming seriously ill with brain damage or permanent health effects. Hopefully Ruth can convince her school to use safer products since children are so much more at risk than we adults. Sincerely, BarbaraFAIR USE NOTICE:This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi, I just read your mention of "chip board." Awful stuff. It should be outlawed. Here in the north, we call it particle board. The builders love it because it is cheap, strong and lies flatter than plywood. Some builders also use "shot wood" which is pre-used particle board. The wood in it has been pulverized, making the cellulose in the wood easier for the mold to digest, it acts like a sponge when wet, the glue is another part of the mold's feast and it is basically a growth medium for mold. I have to move out of my condo because of all the particle board they used. Eckardt Johanning and every builder who saw pictures or the actual particle board said I had a mold problem that couldn't be fixed. Everyone said I should move and I am in total agreement. You can't remove the underlayments without destroying the whole structure. ----- Original Message ----- From: brycervics@... Sent: Sunday, November 30, 2003 5:47 PM Subject: Re: [] Re: New to list Thank You , My family doctor said I had an allergic reaction in my ears that was causing all the itching. She prescribed antihistamine...which did help. It manifests in the ear as a form of fluid that is water like. Very itchy and I dug at it a lot! Related to Sinuses! We are working with Dr Tanner in Lawrenceville, GA. She is a member of the Academy of Environmental Physicians. The only one in GA! We did a through search of "This Old House" for mold(s) and removed an area of the utility room where the second floor bath had leaked in previous times. We did some remodeling in other areas as well but there was no mold(s). We used new drywall and paints that were low odor and less toxic.....but not as safe as we would now use! The crawl space was inspected and found to be dry and has plastic on the ground. Our biggest concern is that the walls, ceiling and floor underlayment are mostly 5/8" thick chip board from 1950's era. No identified out-gassing....but suspected! We likely brought in out-gassing materials with 2 x 4's and shelving. Liquid Nails etc! At present we are using electric heaters to bring the temp up where we need it. Thus we escape the natural gas and potential out-gassing from heating system areas. What is this about the HEPA filtration systems and removal of mold spors? We use three units that effectively filter the air well...overkill in fact. The units are said to remove these spors over 97% or more...and particles as small as .3microns. The replacement inserts cost almost as much as the whole unit! Fortunately? Or ? "This Old House" was a barn and has large beams so the space between floors and walls is big....this helps air to circulate and it does vent to the outside beyond the insulation. We have not given up on it but do feel that a move to a safe® place may be necessary. Bryce On Sun, 30 Nov 2003 17:08:17 -0000 " Larkin" <elisa@...> writes: Bryce and Ruth,I'm glad that you were able to find the group. It's great to knowthat we are not alone in this struggle. Bryce, you said you had an allergic reaction from water in your ears?That is a new symptom to me, can you tell me any more about it? Whathas the doctors said so far? Have you been able to find a good specialist in environmentalmedicine? I'm not that familiar with NE Georgia, so I don't know anylocal doctors that may be able to help. There may be some out ofstate that you could go to. Hang in there and if there is anything that I can do to help, pleasefeel free to contact me. Larkin, Executive DirectorMold Relief, Inc.www.moldrelief.org FAIR USE NOTICE:This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 They do make a safe board now! Ours dates back to the 1950's and who knows if it still off gasses? With all the other possibles we have its a wonder we find as much comfort as we do. Wish there was a device like the gas co uses to detect leaks and carbon monoxide. One that would detect minute off-gassing conditions without all this lab samples etc. "Now" results!!! Guess we need some creative inventors to do this!!! A Mechanical "Canary"! Anyone know if a pet cat is susceptable? Ours seems to be A-OK. Bryce On Wed, 3 Dec 2003 12:47:46 -0500 " Stensrud" <stenjess@...> writes: Hi, I just read your mention of "chip board." Awful stuff. It should be outlawed. Here in the north, we call it particle board. The builders love it because it is cheap, strong and lies flatter than plywood. Some builders also use "shot wood" which is pre-used particle board. The wood in it has been pulverized, making the cellulose in the wood easier for the mold to digest, it acts like a sponge when wet, the glue is another part of the mold's feast and it is basically a growth medium for mold. I have to move out of my condo because of all the particle board they used. Eckardt Johanning and every builder who saw pictures or the actual particle board said I had a mold problem that couldn't be fixed. Everyone said I should move and I am in total agreement. You can't remove the underlayments without destroying the whole structure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi: I just joined this list because my doctor recommended Xolaire, and I'm wondering if any of you have noticed enough of a difference in your allergies/asthma to be worth the trouble and risk of taking this shot? As to giving yourself the shots at home, I understand there is a potential risk for a reaction. Did the doctor give you Epinephrine to inject at home if that happens? Thanks, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 I've been on Xolair since May of this year and have noticed tremendous difference in my allergies/asthma. I didn't pay much attention until I had to be off for a month in July because of fighting with my insurance company for payment. Before going off of it I hadn't used my albuterol but twice after the first week, but within ten days of missing a shot I started wheezing and coughing most every day and waking up in the middle of the night with asthma attacks. After going back on the Xolair (within two-three weeks) I quit having the major problems up until they started spraying cotton end of september which always wrecks havoc on my lungs. So yes, for me, it's definitely worth the trouble. Carol Corley <mybouvs@...> wrote:Hi: I just joined this list because my doctor recommended Xolaire, and I'm wondering if any of you have noticed enough of a difference in your allergies/asthma to be worth the trouble and risk of taking this shot? As to giving yourself the shots at home, I understand there is a potential risk for a reaction. Did the doctor give you Epinephrine to inject at home if that happens? Thanks, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 I am pleased with my progress, it has been 8 mo. I feel better, I am able to continue to work. My research shows there is vary little risks involved, very few adverse reactions. I take my shots at home, the first three months was at the Dr.'s office given by the nurse. I had no reaction, they felt I was a good home candidate. I have not been given Epinephrine but at this stage I think I am ok, guess I could ask my DR for some. So far everything has been worth it for me, I would do it all over again. Ron On Nov 4, 2005, at 8:51 AM, Carol Corley wrote: > Hi: > I just joined this list because my doctor recommended Xolaire, > and I'm wondering if any of you have noticed enough of a difference > in your allergies/asthma to be worth the trouble and risk of taking > this shot? > As to giving yourself the shots at home, I understand there is > a potential risk for a reaction. Did the doctor give you > Epinephrine to inject at home if that happens? > Thanks, > Carol > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 Hi Carol, My improvement has been gradual, but noticeable. Not as dramatic (yet) as for some, but my asthma isn't as dramatic as some peoples'. I've definitely noticed a difference in allergic symptoms too; if I inadvertently wait longer than two weeks between shots, I'm much more reactive. I'm considering starting shots at home, and yes, I have epinephrine with me all the time anyway, because I'm very prone to anaphylaxis. Meryl Hi: I just joined this list because my doctor recommended Xolaire, and I'm wondering if any of you have noticed enough of a difference in your allergies/asthma to be worth the trouble and risk of taking this shot? As to giving yourself the shots at home, I understand there is a potential risk for a reaction. Did the doctor give you Epinephrine to inject at home if that happens? Thanks, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 Hi , i'm new to this site as welll.... my name is Lin.... good luck on the xolair... my son just started the xolair back in may and hes also on allergy shots.... they seem to be working just fine so far.... my son hasnt used his inhaler or nebulizer... since using the shots....just recently he just got sick due to change in weather here in pittsburgh.... but it was a big decision to make whether to take the chance and try these shots......i wouldnt change a thing... i would do it again in a heart beat.... my son was the one who made the decision to take the shots..... im glad he did.... to carol::::::: everyone is different.... but if it was a chance in ur life to maybe feel better, what would u do? my son has beena severe asthmatic since birth... i take any chance of a lil hope as i can so he can feel better..... any chance of hope is better than feeling sick everyday... good luck to u carol...... Lin from pittsburgh pa " G. " <rrgrimes_u3@...> wrote:I've been on Xolair since May of this year and have noticed tremendous difference in my allergies/asthma. I didn't pay much attention until I had to be off for a month in July because of fighting with my insurance company for payment. Before going off of it I hadn't used my albuterol but twice after the first week, but within ten days of missing a shot I started wheezing and coughing most every day and waking up in the middle of the night with asthma attacks. After going back on the Xolair (within two-three weeks) I quit having the major problems up until they started spraying cotton end of september which always wrecks havoc on my lungs. So yes, for me, it's definitely worth the trouble. Carol Corley <mybouvs@...> wrote:Hi: I just joined this list because my doctor recommended Xolaire, and I'm wondering if any of you have noticed enough of a difference in your allergies/asthma to be worth the trouble and risk of taking this shot? As to giving yourself the shots at home, I understand there is a potential risk for a reaction. Did the doctor give you Epinephrine to inject at home if that happens? Thanks, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2005 Report Share Posted November 9, 2005 Hi, my friend actully told me i should try xolair. I have pretty allergic asthma, along with anaphalaxis. I was told by my asthma/allergy dr to try the allergy shots, and i'm going to start that in a couple weeks. How does it work with your son with his, has the allergy shots helped? Can he get both the same day? I was going to talk to my dr about the xolair on my next visit. Thanks, Nicki Hi: > I just joined this list because my doctor recommended Xolaire, and I'm wondering if any of you have noticed enough of a difference in your allergies/asthma to be worth the trouble and risk of taking this shot? > As to giving yourself the shots at home, I understand there is a potential risk for a reaction. Did the doctor give you Epinephrine to inject at home if that happens? > Thanks, > Carol > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2005 Report Share Posted November 9, 2005 --- In , " Carol Corley " <mybouvs@m...> wrote: > > Hi: > I just joined this list because my doctor recommended Xolaire, and I'm wondering if any of you have noticed enough of a difference in your allergies/asthma to be worth the trouble and risk of taking this shot? > As to giving yourself the shots at home, I understand there is a potential risk for a reaction. Did the doctor give you Epinephrine to inject at home if that happens? > Thanks, > Carol > > Quote Link to comment Share on other sites More sharing options...
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