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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.
I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.
In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.
I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.
Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?
Had anybody out there had their M. avium subspecies identified?
To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.
I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.
Replies to "Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access..."
Hello DebyMacc, after confronting my doctors with my many questions about my infection and concerns about taking the antibiotics, they took me off of them...Now I am back where I started, maybe worse. Since I was treated for 5 straight months, battling the mycobacterium avium now the MAC will have an opportunity to regain its position and also build an immunity when/if they decide to start antibiotics again. Your doctors saved your life with treatment....I believe that mine are killing me.
Melissa,
I just saw your post on Dr. Aksamit. FIGHT to get to him! He is the absolute GURU of MAI!! He is on the National Board and is absolutely wonderful!! I go to him and think the man absolutely walks on water! I adore him. When I was SO afraid to go on the antibiotic .. now I am choking up just remembering this .. he took my hand in his .. looked me in the eye and said "We will walk this walk together my Friend." .. and Melissa he DID. For all those long months .. I was on the antibiotics for thirty months .. BUT now I have been off since May 2014. FIGHT TO SEE HIM!! It is your life and health!! Go to the media if necessary .. the VA is not in too good a light right now .. AND the public stands behind the military BIG TIME! Tell the Bigwigs you do NOT want to go to the media .. but that you also don't want to die .. their choice!! Stand up for yourself!
Hi Melissa. I believe your treatment was supposed to include a third anti-biotic along with the other two. I think it is called rifanpin or something like that that. Raynaud's is an auto-immune disease and as such leaves one suseptable to weird infections. Def get to the Mayo.
Rifampin
Kate: Where is Dr. Aksamit? I need a good doctor for my mac
@donut, I go to Dr, Timothy Aksamit at Mayo Clinic, Rochester MN .. he worked with a team of several doctors .. you can't go wrong going to ANY of them. Below is some good info on doctors hope it helps:
MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
* Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.
For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s
MAYO CONTACT INFO .. JACKSONVILLE FL
@windwalker, Terri shared 01/17 : Mayo Clinic in Jacksonville, Fl. and I see Dr. Jack Leventhal (pulmonologist) he has been a real blessing and life changer for me. The Mayo has an easy to use website with a "make an appointment tab. You do not need a referral. They have a dept to ask if your insurance will cover you there. They are a non-profit hospital, therefore, they don't gauge on pricing either.
*Another member: pulmonologist at the Mayo Clinic in Jacksonville FL. His Name is Dr. Jack Leventhal. This man has saved my life I am sure. I was put on alternating monthly antibiotics for three yrs. that worked for a while. Now I am on alternating months of an additional antibiotic called tobramycin. It is super expensive but it has totally dried up the infection. It is what they commonly give to CF patients to help keep the myco-organisms at bay
*or Dr Chandler.
+++++++++++++++++++
JEWISH NATIONAL HEALTH
https://www.nationaljewish.org/treatment-programs/directory/ntm
on the rigorous tests without worry about paying for pricey tests....especially as they were added.
*From Member @tdrell Terri who was diagnosed at National Jewish Health for MAC in Denver * The reason MAC was found in my lungs when I had the bronchoscopy was that I have severe GERD and since it...NTM is in tap water....it had been aspirated into my lungs as I slept plus silent aspiration during day into my lungs.
@melissa23, Melissa, I've thought of you so often .. wondering how you are .. if you have time could you check in and just let us know how you are doing? Sending you a hug! Katherine
Hi, I saw your post and am interested in how you feel now? Did you get a negative sputum culture back after treatment? My Dr.'s do not want to treat it. I would love to know how you are doing. Thanks, Jan, from VA
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I'm reading these comments with much understanding . I really never thought<br />
I would live to see another year. That was 2008. I also had antibiotic<br />
therapy for a year. High doses about 3200 milgrams of antibiotics a day. It<br />
worked . I was very week for that year and had very few side effects.<br />
Coughed up every morning for awhile to rid my lungs of mucus. I had a great<br />
lung physician , without him I wouldn't be here today.<br />
<br />