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cbdonlon (@cbdonlon)

Insurance claim denied, consultation in 5 days

Visiting Mayo Clinic | Last Active: Dec 3, 2018 | Replies (9)

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@ldestella

Hello-
I found out that I have CVID after 2 yrs of constant Upper Resp Infections and over 35 antibiotics and ME PUSHING THE DOCTORS TO DIG DEEPER. It has been a wild ride trying to get someone to listen to me. I know, without ANY doubt, that the Ribaviron/Interferon treatments gave me this wicked disease. I have to have gamma globulin treatments every month for the rest of my life. They are not to bad depending on the nurse who runs the infusion.
During this time of yr…flu season, I wear a mask when I go out into public places i.e. grocery shopping, doctors, mall. CVID is when the big guys of the immune system; IgG, IgM, IgA are depleted. This is a permanent situation. Having CVID also makes your body extremely vulnerable to an autoimmune disease. I have Sjogren's syndrome. Any questions, pls don't hesitate to ask! Lisa A. DeStella

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Replies to "Hello- I found out that I have CVID after 2 yrs of constant Upper Resp Infections..."

Thank you @ldestella I appreciate the support. My husband was coughing up pools of blood and fighting for his life with a case of pneumonia before anyone thought to test his antibodies…. 8 years of this, 8 years and it took watching a 30 year old man dying on a hospital bed before anything helpful was done. This small ignorant town will be the death of him… so the appointment to Mayo Clinic was like a god send, but insurance declined it. After everything, they would rather pay for useless test after test than allow him to be seen by pioneers of medicine? I don’t know how to pay for his treatment or appeal to insurance but he needs to go to Mayo…