I AM NEW TO THIS WEBSITE

[shellymaxie]

I HAVE CVID 4 YEARS..I KEEP INFECTIONS....I HAVE 5 MORE DISEASES

I HAVE MY TREATMENTS EACH WEEK AT HOME. WE USE THE MEDICATION HIZENTRA SUBCUTANEOUS...TAKES 4-5 HOURS TO ADMINISTER WITH 4 NEEDLES IN MY STOMACH.

MY DAUGHTER HAD CVID AND SHE DIED MAY 27, 2004, AT THE AGE OF 24.... SHE GOT A BAD BLOOD INFECTION AND COULD NOT FIGHT IT....ANTIBIOTICS WOULD NOT FIGHT IT....SHE HAD OTHER DISEASES AS WELL...WE HAD HOSPICE....I TOOK CARE OF HER, SHE WAS DIAGNOSED AT THE AGE OF 18.....

HAS ANYONE THAT HAS CVID HAVE A CLOSE FAMILY MEMEBER WITH CVID ALSO?

[poohb3ar]

bless your heart! you have certainly and are still having a rough time of it.
i am so sorry about your daughter.

i'm afraid i have no advice for you, but i thought i would move your post to General Questions and ANswers where you'll get more response.
Military Veterans is a good forum, but since this doesnt deal just with military and MS issues i thought i'd move this for you.

may God bless you with comfort and solutions.
take care!

[Ga dancer]

Hi shellymaxie,

I also have CVID, in addition to MS, Hashimoto's thyroiditis, Psoriasis, Rosacea, and possibly something called Polyglandular Autoimmune Disorder (there are 3 types but unsure which I have). I have had sinus sx, 2 PICC lines for IV antibiotics and a ton of oral meds. I just came home from the ENT with yet another positive culture.

My kidneys are getting worse and my doctor is sending me to Johns Hopkins - my medical records are already there, then the Medical Director decides how many specialties I need. The doctor thinks I may have Sarcoidosis affecting my kidneys.

I don't think it had anything to do with my current problems, but I lost a son to Lymphosarcoma at the age of 3. Lymphoma is common with CVID however.

My older sister died at 57 from childhood diabetes complications, my younger sister died at 38 from Lupus. The infectious disease doctor asked about the health of my 4 grandchildren, and I am still freaked.

I believe there is a common thread to my illness(es). If Johns Hopkins doesn't help, I plan to request a referral to NIH Undiagnosed Diseases in Bethesda. They research rare cases.