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Dec 27, 2017 · Treating Osteoporosis in Bones, Joints & Muscles

@jaleen, Well said! I have refused to take the biophosphates as well for three years, My now third endocronologist says that the 3-24 hr urine tests showed extremely excessive amounts of calcium loss in urine, (triple the % of a woman my age)! She cannot believe other endo’s didn’t address instead of just trying to push fosamax! ! I also have a rare immune deficiency that my B cells do not mature into antibodies. My body continues to reproduce B cells in my bone (thus overworking and potentially depleting the bone) to accommodate for lack of antibodies (b cells matured). I infuse plasma every week filled with antibodies to help ward off germs, bacteria’s, etc. The endo’s just don’t pursue CAUSE and treat cause,,,instead they throw the caustic drugs into our bodies to make up for the depleting bone density! Find & treat the cause, instead of trying to refill a tank with a hole in it!!Sorry your Dr was so rude, It is just tragic our medical industry is no longer a profession of care, or a yearn for investigation of causes that will possibly cure not harm the patient!

Dec 9, 2017 · CVID in About Kids & Teens

Hello “jhrbts”… I also have CVID, and infuse immuglobulin at home once weekly. I am so sorry that your son and your family is struggling with this diagnosis and all that is associated with this disorder. Lotsostufailing gave you awesome advice and Information. This disorder becomes even more complicated because most dr.s and our society in whole are not familiar with it. I just wanted to add that there is a wonderful organization called the Immune Deficiency Organization or “IDF”. They are well organized and do a wonderful job both politically for us in Washington as well as education and support for us, our dr,s , friends and family. They have wonderful groups and educational things for our young especially. sometimes this disorder secluded us from daily interaction and or friends, recreation etc. It is 1000 x worse for our young ones to feel isolated, and or different. IDF has wonderful advocacy programs for youth and gatherings, etc. Also check out FB as their are many CVID support groups and I believe at least one is primarily for young CVID patients and parents trying to deal with schools, social and family situations. I wish you, your family and your son the best. If you need further info please do not hesitate to connect. take Care……..

Dec 9, 2017 · Treating Osteoporosis in Bones, Joints & Muscles

I was diagnosed with CVID, Hypogammaglobulinemia 5 Year’s ago and am infusing immuglobulin at home once weekly. I was Osteriopenic in 2012 but rapidly turned to Osteperosis by 2014 at age 54. I refuse to take biophosphates. I have tried to research the relationship of osteoporosis with CVID as I believe CVID has had a direct impact on my bones. I have found little correlating Documented studies or information. As most Dr,s today have no idea about CVID (I have to educate most of my dr,s) my Endocronologist agree’s my theory that if My bones work “overtime” producing more “B” cells in attempt to compensate for the sluggish non-maturing ones that possibly this overwork and production is depleting my bone health. Tho unfortunately she has no education or experience with CVID so she doesn’t understand how to investigate further optional ways to look at the treatment, cause and or effect on osreoporosis. You mentioned above that osteoporosis is your reason (or symptom) of CVID. Can you share where I can find research on this. Can you share how you have confirmed this and explain the correlation? I am urinating excessing amounts of Calcium (40%). Standard for woman is less than 20%. I did the 24 hour urine twice as my Endocronologist could not believe the massive loss of calcium. She tried me on a dieuretic but my body just rejected it and I became violently ill. My bone density is 3.4. Any information would be greatly appreciated! Thanks!