(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I recently went to Mayo Clinic in Jacksonville! I saw a really good doctor there and he did a bunch of testing and I was well pleased with my visit. It’s a really great place to go visit and the doctors are amazing. If there’s a way that you go up there and see a pulmonologist it would be good because they give you the best choice of medication. But that’s not the only place to visit. It’s just I waited for so long and I did not want the treatment! But when I join this group I really got helped and I also learned about Mayo Clinic. I am sure it will get a little better every day. Hugs Rita

America --- that was a very nice response you just wrote. Down to earth and quite encouraging I would think -- for those of us who are a little scared and very skeptical. I went to Mayo's in Rochester three years ago and I feel certain that I would not be here today had I not done that. They continue to work with you through a portal and are very easy to reach when you have a problem. I had been ill for several years prior and no one locally had any idea what was wrong. So..... if you can visit Mayo's I'm sure you will feel 20 years younger and be stepping high when you leave.

Thank you america

@xfirerose Hi there. Welcome to our group. I have never heard of that term 'CVID', but, I know that having immunodeficiencies are frought with all kinds of complications. It is not easy, I know. I, myself, am prone to catching every weird or a rare kind of thing. I have bronchiectasis along with several other lung diseases. I have had mac and pseudomonas. I test negative now. Of mac, since 2013. Of pseudomonas, since 2016. Just know that when you have bronchiectasis, you can be suseptible to these two common bugs. I never did the 'Big 3' antibiotics, but am on monthly maintenance antibiotic regimen. As long as we have bronchiectasis, we will be prone to infections. Or least, that is my understanding of it. What does having CVID entail? What is living with that like?

@jammer Hello. Welcome to our group. I am sorry to hear about your diagnosis. It can be a scary thing; but the more you learn about it; the less scary it is. Unfortunately, Florida is listed as one of the seven 'hot-spots' for mac in our country. I caught mine in Arizona, another hot-spot. Have you had a chance to read about topics on our Discussion Board? It is located on the Mac and Bronchiectasis group home site.There is a post on how people catch mac and then another one on how to avoid infection or re-infection once you are rid of it. If you need help locating that, please let me know. I can tell you this: after you have worked through the natural steps of denial, anger, acceptance, etc. concerning this disease, it will take an attitude 'agreement'. By that, I mean a good mind-set. For me, it was a decision that I was NOT going to be that sick person. (it could be a healthy form of denial). Getting a great doctor is key to treating this infection. In my opinion and that of @alleycatkate, @auntnanny and @america; we think that Mayo Clinic in Jacksonville is THE place to go for the best treatment. How are you feeling now? Are you having many symptoms?

@jammer @windwalker Hello Jammer!! I am sorry about the diagnosis that leads you to this group but you will not find a more helpful and supportive group. I went mentally over the top after I was diagnosed as my doctor gave no information and I did not know the status of my disease and infection. I decided that I needed to go to Mayo and the weight of the world was lifted from my shoulders in consulting with a professional that deals with this on a daily basis. I knew I was getting good information which is of utmost importance. What I did find about my circumstances are that I have mild Bronchiectasis and mild MAC. Since you seem to have little to no symptoms perhaps you are very mild also. It was such a relief to get info on how to go forward and what could be helpful in keeping my lungs healthy. For me, it was very simple...keep antibiotics on hand in case of a flare-up (a 10 day course of one that is not used in the treatment of the big 3) Nebulizing to thin phlegm and keep lungs clean...along with an acapella to help bring up phlegm. I am also paying attention to acid reflux which is a big deal with our disease. We do not need to have anything aspirating into our lungs at night so I am now using a wedge to sleep on and not drinking or eating 3 hours before bed. (maybe a sip of water) That has been helpful in reducing acid reflux. You could have "silent" reflux and be unaware that you have reflux but there is actually testing that can be done to verify that. I am thrilled that so far this is what I am dealing with and am hopeful that maybe your DX after your bronchoscopy may be similar to mine. I would encourage a journey to Mayo in Jacksonville, at least for a second opinion. I am in Vero Beach, FL...the drive and overnight was so worth the peace of mind and expert guidance that I received from the visit. Wishing you good luck on the upcoming Broch and good health. Let us know how it goes, please. Kate

windwalker here is a link that briefly explains CVID. I get immuniglobulins every 3 weeks like Victoria in the story. Now that I have bronchiectasis and MACI am even more susceptible. I live in Las Vegas, NV. MAC is getting more common here. I wanted to go to Mayo in Scottsdale for treatment but my insurance said I can't get coverage there. I have to go to UCLA. I am always anxious about even getting a cold. Things have gotten much worse for me I guess.

@windwalker I wasn't. able to post the link for CVID. They think CVID is genetic; I am not able to produce much of my own antibodies because my B cells are not working great, so I get antibodies from blood donations once every 3 weeks. Catching a cold can be dangerous or even turn deadly for people with CVID. Similar to bronchiectasis we are very vulnerable to bacterial infectious of the respiratory and gastrointestinal tract. I wear a mask around groups of people and children. I have been hospitalized many times for the wierdest infections. After awhile these infections cause damage.

@xfirerose are you on Immunoglobulin concentrates for the CVID?

YesI do get immunoglobulins for my CVID. Not sure it is concentrated, probably. I heard it takes many donors for one treatment. I get three small glass bottles through a port in my chest every 3 weeks. It has substantially improved my quality of life and extended my life. It was hoped that it would help me fight this MAC infection. I believe it has slowed the progression.