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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@milagro103, do you have a first name .. more personal. I googled "mycobacterium ventiflavum" .. what I came up with was "Mycobacterium lentiflavum" are you sure you have the correct spelling? If I was sitting in your shoes AND my spelling is correct .. I would do some reading on the below google search .. EDUCATE YOURSELF .. so you can become your husband's advocate! My husband has many health issues .. so I know all about the need to be a spousal health advocate! Get to researching .. then ABSOLUTELY if I was sitting in your shoes I would be looking for a second opinion. AFTER you have researched the below .. AND done some reading of the back pages of our back pages of this Main Forum .. why? BECAUSE ALL the mycobacterium strains share very similar issues .. journeys .. and you will learn a LOT! After you have done this .. please feel free to come back with any questions .. we have ALL been on this same journey .. we will walk this journey with you! Sending you a hug .. I know it is a tough time! Katherine
https://www.google.com/search?q=mycobacterium+ventiflavum&oq=mycobacterium+ventiflavum&aqs=chrome..69i57j0l5.886j0j4&sourceid=chrome&ie=UTF-8Replies to "@milagro103, do you have a first name .. more personal. I googled "mycobacterium ventiflavum" .. what..."
@milagro103 Eva...very glad you got to Mayo...they're very good and throrough
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Thanks everyone, My name is Eva btw!,, We are at the Mayo Clinic right now I am so impressed with this group of providers. Katherine, it is the correct spelling and I have researched. That is why I was asking. The problem is they DO NOT know what the bacteria is and cannot characterize the type of ILD based on biopsies and a surgery where they took a pieces of each lobe of the worst lung and studied it layer by layer. I feel hopeful with this new doc at least she listened. I will let you all know what the results are.