Comment receiving replies

I also have common variable Immunodeficiency ,(CVID) as well as MAC. I tried the 3 antibiotics and was not able to tolerate two of them. So I was discontinued. Now my lungs have gotten much worse. My pulmonologist is referring me to UCLA for treatment. I have also developed Bronchiectasis from the MAC infection. I do not know anyone with CVID. Does anyone on this discussion have CVID?

Jump to this post

Replies to "I also have common variable Immunodeficiency ,(CVID) as well as MAC. I tried the 3 antibiotics..."

@xfirerose are you on Immunoglobulin concentrates for the CVID?

@xfirerose, Hi. I had asked you in another post if you could take antibiotics since you were also on the immunoglobin therapy. I never took the 'Big 3', my Mayo dr put me on monthly antibiotics. For 10 days one month, I'd take ciprofloxacin, then on alternating months, I'd take doxycycline for ten days. A yr later I tested negative for mac, but stayed on those two meds for two more yrs to keep the mac away. That was in 2013. I test negative to this day.(I was severely ill) Perhaps you can tell my story to your doctor and be sure to tell him\her that this treatment plan came from a Mayo pulmonologist. I want you to mention that because Mayo physicians are highly respected. They are the cream of the crop in medicine. Without knowing your susceptibility test results to treat mac, my exact two antibiotics may not work for you, but perhaps another pair would. The meds are given alternately to prevent resistance.. One more thing, your dr can call your insurance company and/or Medicare and tell them that they need to make an exception for you to go to Mayo due to you having a rare disease. Sometimes, they can get that through. @alleycatkate was able to flip hers and got into the Mayo. Please keep me posted on what they decide for you