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| Name: | Pamela Matheny |
| E-mail address: | pjmatheny@msn.com |
| Comments: | I'm one of the one's for whom you are working to find better therapies! I do the monthly infusion of IV Ig. I'm changing insurance carriers right now, and crossing my fingers that coverage is good enough to continue the treatments. Since I'm starting with the new carrier in November - of course I have to meet the deductible and 20% co-payment now and again in January. Wow. The treatments do help. I suffered several bouts of pneumonia a year - hard to recover before the next one hit. Doing great now. I've been getting the immune gamma globulin for almost three years now. Keep up the good work |
| Name: | Diane Mato |
| E-mail address: | DianeMato@comcast.net |
| Comments: | Nice campaigne on braclet. Can you please tell be how you started. I'd like to initiate here in Illinois. Thanks. 630.359.3379 |
| Name: | Dr.K.G.Vaishnav |
| E-mail address: | keshav_vaishnav@yahoo.com |
| Homepage URL: | http://www.yahoo.com |
| Comments: | My baby is suffering last three year with primary immunodeficiency there are lot of investigation made regarding her final diagnosis but could not finalised. Now is near to five year old. Thanks |
| Name: | Dr.K.G.Vaishnav |
| E-mail address: | keshav_vaishnav@yahoo.com |
| Homepage URL: | http://www.yahoo.com |
| Comments: | My baby is suffering from primary immunodeficiencry. |
| Name: | Mercedes |
| E-mail address: | serenityinhaines@hotmail.com |
| Comments: | It saddens me so to read all the stories that are so familiar to mine. I am the younger sister of a 34 yr old man who was diagnosed a a week ago with cvid and has almost died three times in the last 3 years from infectious diseases, no insurance group will cover him and the doctors said were poor enough for medicaid, but if we weren't they would of sent my brother home to die, he has a wife and three young girls. Why is this cvid so common, sooooooooo, common seeing all the sites i have searched. Who has answeres to disability and social security. Pls send any info if you have the time. Thanks for the help Mercedes |
| Name: | GUADALUPE |
| Comments: | I Dont KNOW ENYTHING!!!!!JUST KIDDING!!!!!!!!!!!!!!!!!!!!!! Tuesday, June 21st 2005 - 04:18:50 PM IP Address 141.155.107.158 |
| Name: | Jan Arms |
| E-mail address: | pja004@provide.net |
| Comments: | Nice start to a Michigan Web site. |
| Name: | Laurel P. McDonnell |
| E-mail address: | www.FFFenterprises.com |
| Homepage URL: | http://nufactor.com |
| Comments: | Nice job on the MIDF website! Very informative. |
| Name: | Paula Polinski |
| E-mail address: | pmpolins@samford.edu |
| Comments: | I have CVID and IVIG infusions. Can you please give me any materials on the subject. |
| Name: | Caroline Khalil |
| E-mail address: | jkhalil1@houston.rr.com |
| Comments: | I am interested in the bracelets - I would like one. I have CVID and IgG subclass and not able to keep working - alot of pain and aches and exhausation constantly fighting viral/bacterial infections. I need help going out on disability. Any one been through it? |
| Name: | Kim Curran |
| E-mail address: | kaclight@sbcglobal.net |
| Comments: | Great site! I think that every state should have one! |
| Name: | Emma Frame |
| E-mail address: | frameemma@hotmail.com |
| Comments: | HI I AM A 24 YEAR OLD GIRL WHO IS FROM MANCHESTER, UNITED KINGDOM. I HAVE JUST BEEN DIAGNOSED WITH COMMON VARIABLE IMMUNODEFICIENCY(CVID). IT WAS DIAGNOSED BY A HAEMATOLOGIST AND I AM WAITING TO SEE AN IMMUNOLOGIST AS I MAY HAVE OTHER PROBLEMS WITH MY IMMUNE SYSTEM SO I HAVE NOT STARTED TREATMENT YET. I CAME UPON THIS SITE AND MANY OTHERS WHILE I WAS DOING RESEARCH ON CVID. I FIND THIS SITE VERY INTERESTING AND HELPING AS NOW I CAN UNDERSTAND THE CONDITION I HAVE GOT. COULD ANYONE TELL ME WHAT IT IS LIKE HAVING THE INTRAVENOUS IMMUNOGLOBULIN G? AND CAN YOU STILL GET VERY TIRED WHEN YOUR ON THE TREATMENT. IF YOU WOULD LIKE TO CONTACT ME MY E-MAIL ADDRESS IS: frameemma@hotmail.com HOPE TO HEAR FROM PEOPLE SOON. FROM EMMA |
| Name: | Katie Wikstrom |
| E-mail address: | kwikstrom@sbcglobal.net |
| Comments: | Great sight!How do you folks obtain your IGg? I have CVID, and am not finding IM or IV, or the new Sub Q ingections available. My insurance won't even give me a quote on possible co-pay. I am an RN ,off right now because of 6 weeks of infection. Thank you, Katie |
| Name: | Bonnie Simler |
| E-mail address: | bonniesimler@sbcglobal.net |
| Comments: | Thanks for all your time and effort Dave!! If anyone out there would like to chat sometime,please feel free to email me. Bonnie 37 CVID |
| Name: | Sheryl Henderson |
| E-mail address: | sheryl_h_2002@yahoo.com |
| Comments: | Dave, Good job!!! Sheryl |
| Name: | Kathi |
| E-mail address: | kathib1951@yahoo.com |
| Comments: | My husband and I enjoyed the spring lecture with Dr James Baker last night. Thank you for including us. I spent much of today investigating options for home infusion vs the infusion center I'm currently using. Keep up the good work. Kathi |
| Name: | Mark Goldstein |
| E-mail address: | mgoldstein@beaumonthospitals.com |
| Homepage URL: | http://mgoldstein@beaumonthospitals.com |
| Comments: | Great website! I am glad it's out here. |
| Name: | Robert Murenje |
| E-mail address: | bobmurenje@yahoo.com |
| Comments: | I was glad to read the dream book and discovered that out there there are other people who share the same fate with my wife who suffers from a low count of B cells hence suffers from normal human immumoglobin defficiency and she has been vulnarable to many infections.It was recently october 2003 when it was discovered that she has this defficiency and she needs to go through a therapy which needs normal human immunoglobin for intravenous use.Our dilemma is we can"t get it in our country [ZIMBABWE].The neerest country which has is South Africa and its costing us $65 million Zimbabwean dollars or R70 thousand Rands of South Africa this is for the first 12 months and we are told that this therapy is done often and for a life time of the patient. NOW PLEASE IS THERE ANY ONE OUT THERE WHO KNOWS WHERE WE CAN GET THIS SERVICE AT CHEAPER RATES THAT I MENTIONED OR A FOUNDATION THAT CAN ASSIST US. THE CONDITION OF MY WIFE RIGHT NOW IS LIFE THREATENING SHE HAS BEEN LIVING MUCH ON ANTBIOTICS WHICH ARE NOW FAILING TO COMBAT INFECTIONS AND HER CONDITION IS CONSIDERED CRITICAL ONLY THE THERAPY CAN RECTIFY THE SITUATION.If there is any one with information that would help PLEASE contact me on my e.mail address bobmurenje@yahoo.com Your assistance will be greatly appreciated. |
| Name: | Eileen Shields |
| E-mail address: | esshields@aol.com |
| Comments: | My son, age 22, has Common Variable Hypogammaglobulinemia (IgG deficient). He is receiving IVIG every month at a hospital setting because Michigan's Adult Medical Waiver won't cover home infusion. I would appreciate any help that anyone could give us. He is applying for SSI and trying to get any little bit of help is FRUSTRATING! Thanks for any help! Eileen Shields |
| Name: | Dennis M. Marien |
| E-mail address: | dmm919@yahoo |
| Comments: | pretty good site, you've done well! |
| Name: | Flo Sancken |
| E-mail address: | floblingbling@aol.com |
| Homepage URL: | http://floblingbling |
| Comments: | Hi, I am 57 yrs. old and have had Chronic Severe Asthma/Chronic Bronchitis/COPD for 12 yrs. I was diagnosed in 1998 with CVID's, my IGG is 315, my IGA is 73, my IGM is 18, and my IGE is 14, my "T" Helper cells are wiped out, I get 30 gm. Gamma by infusion every 3 weeks. I am on about 30 prescriptions. I have been on steroids for 12 yrs. and hospitalized for month at a time. I developed glaucoma, diabetes, GERD, hiatal hernia, fibromyalgia, IBS, Sjogren's syndrome, chronic oral thrush, depression, fatigue, insomnia, all from the medications I need to keep my air ways patten so I can breath. Is there any hope for this disease? Flo |
| Name: | Jane Sprayberry |
| E-mail address: | jsprayberry@comcast.net |
| Name: | Jane Sprayberry |
| E-mail address: | jsprayberry@comcast.net |
| Name: | glenda |
| E-mail address: | quietstorm1992j@wmconnect.com |
| Comments: | hi, i came upon this site in my research of idd (immune deficiency disorder). my son,joshua was dignosed with a missing complement in 1999.the dignosis was made when we almost lost him to bacterial meningitis. he is on lifetime antibotic therapy but still has problems. is well alot of the time but when he gets sick it is swift and often severe.i monitor him closely and am in contact with his infectious disease specialist at the first hint of trouble.he has missed alot of school and the social worker's really giving us a hard time about his absences,(so far he has missed 20 days). he now is dignosed with arthritis in his knee and just seems to have a multitude of problems that come and go. he is still undergoing further tests but so far we know that he is missing complements 7 and 8. i can find information on the immune system but nothing specfic on these enzymes. can you help ? i'm trying to learn all i can . there's just so much. i also need to learn about what students rights are who have this or other health impairments.our social worker is more concerned about his attendance and is offering no other advice except the possibility of home-schooling. any and all info would be greatly appreciated. joshua is a precious 10 year old who appeared to be of normal health until kindergarten. thank you for listening. joshua's mom |
| Name: | Sheryl Henderson |
| E-mail address: | sheryl_h_2002@yahoo.com |
| Comments: | Hi Dave, I saw your post, on the IDF web site, so I thought,I'd just say, hi! I am a 57 year old, CVID patient, diagnosed 10 years ago..after 10 years of extreme illness! I can certainly, relate, to your problems! Do you also, have muscle and joint pain? I was diagnosed, with Fibromyalgia, which also causes, RLS. It seems as if CVID, gives us, a big bag, of poop, with many names! I hate it........but,I am so happy to be alive, I consider, every dawn, a gift from God! God love you...and you keep on, keepin on! Sheryl |
| Name: | Michele Lewis |
| E-mail address: | mamu710@wideopenwest.com |
| Comments: | Hi Dave, Nice work! Looking real good. You must be working real hard to get this off and running! Thanks for the effort! I know many people will benefit from the information. Also, nice to have local support! Take Care and Thanks again! Michele |