Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 Another lady who has been to numerous doctors(without getting an EDS diagnosis) for years - she has been diagnosed with CFS, FM, low blood pressure, extreme chemical/food sensitivity(can only eat proteins - no one seems to be able to help her with this) - she recently got a diagnosis of EDS -Hypermobile type(from a Geneticist at Hopkins) - she isn't sure if this is what she has or not(she doesn't have much faith in the medical community). I did tell her that others with EDS do suffer from the same problems as her, each with different degrees of severity. She seems to be having a hard time believing the EDS diagnosis after all these years(I told her that wasn't unusual at all). I think she needs to hear from others with the same problems. She also needs to hear what has help others with the food sensitivity, this seems to be a very difficult problem for her. Thanks again, Bowen, D.D.B.III - President ~~~~~~~~~~~~~~~~~~~~~~~~~ Southern New Jersey Branch- Ehlers-Danlos National Foundation Mays Landing, NJ 08330 E-mail: SJ-EDS-DAVID-MOM@... website: http://www.aclink.org/eds http://www.ednf.org ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ In Loving Memory of my son, http://pages.prodigy.net/sj-eds-david-mom/index.html ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ They that " LOVE " beyond the world cannot be separated by it. " DEATH " cannot " KILL " what " NEVER " dies... Penn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 , Do you have an email address for that lady? I have food allergies, as well as allergies to other things. I went through the 'they don't know what they are talking about' bit, too. Especially after one doctor told me that it was all in my head and told my Mum (who knew better) to get me to a psychiatrist as soon as possible. -- Fuller Winchester, England HEDS (VEDS overlay), FMS, OA, IBS, lumbar scoliosis, tinnitus, some hearing loss, chronic depression, multiple allergies, asthma.... Please excuse any typos or odd phrases. I am talking to the Dragon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 I have food allergies, as well as allergies to other things. > Fuller > Winchester, England > HEDS (VEDS overlay), FMS, OA, IBS, lumbar scoliosis, tinnitus, some hearing > loss, chronic depression, multiple allergies, asthma.... ellen texas heds fms, oa, ibs, celiac sprue, lumbar scoliosis, tinnitus, some hearing loss, depression. multiple food allergies and intolerances,(12 foods not allergic too) eosinophilia.... how many others have food allergies and or gut problems ellen in tx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 Hi Ellen, Well, in our house we cope with many allergies as well as hypermobile EDS. (7) is allergic to latex, beestings, penecillin, sulfa, biaxin, asperin, ibuprofen, vioxx, adhesives (most have latex), all citrus fruits, pineapple, strawberries, kiwi, red food dye and maple syrup as well as some seasonal allergies. also has reflux problems which are treated with prevacid and a 30 degree bolster in his bed. also has food sensitivities which aggravate his reflux at times. (4) is allergic to latex, peanuts, all nuts, all citrus, strawberries, kiwi,pineapple, pine nuts, tumeric, penecillin, ceclor and erithromycin. also has reflux problem which are treated with prevacid and a bolster in his bed. He has a long standing history or choking and aspirations into his lung. Both kids also have asthma but has the most difficulty with it. He has been on puffers since he was 3 months old. If I can be of any help please let me know. Quote Link to comment Share on other sites More sharing options...
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