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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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My name is Barb and I have been diagnosed with MAC that at this time they have decided at the Mayo not to treat. I was there in late March and saw Dr Aksamit's assistant. I have seen Dr Aksamit in the past and adore him. My trust level in him is huge. He is also very thorough and explains and goes over everything in detail. After my last visit I emailed him to get clarification on whether I had bronchiectasis. The Chest Ct scan results were without 'bronchiectasis' although bronchial wall thickening and mucous plugging. My pulmonary function tests were good and no changes on my chest X-ray. So I guess that is good news plus I gained back 10 lbs.
It still is hard sometimes because so many doctors and people do not understand this condition. I may not respond to all emails but I feel this group is one place that gets it! My mom had this too and it was never treated and she is 92. But then she never smoked either, unlike me!
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2 ReactionsLindam272.... As promised I found Chest Cat scan summaries....
Will it be of value for me to type out the.summary of NJH 's....thebone I found so thorough compaired to the local ones?
Tdrell
Tdrell, Thanks for remembering about that! I sure don't want to put you to a lot of trouble. Whatever information you think is helpful that I can pass on when I have my next scan done - or for anyone when they have their next scans done - would be great! Linda M
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1 Reaction@barbjh, Barb, what follow up did Mayo tell you to do .. annual, bi annual, quarterly check ups? If you were diagnosed with MAC .. you DEFINITELY should be having follow up.
From my File Cabinet:
Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmonary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine
@windwalker, Terri, asked my Mayo doctor about the Adderall .. was told to request from my local Internist. Saw my local internist today .. told a resounding NO! Why? I really trust her .. she said because of my age .. possible future heart issues .. and because of all the meds I have/am on. I really trust her .. AND the "Jet Alert" seems to be helping a bit so will just keep "truckin". Hugs to all! Katherine
So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M
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1 Reaction@lindam272 Linda, you can QUOTE ME .. the practice of an EXPERT, Dr. Timothy Aksamit, Mayo Clinic, Rochester, MN EACH AND EVERY follow up check up that I had was: sputum culture/Xray/Pulmonary Testing. This was his STANDARD practice from 2011 when I began to see him up until 2017! Plus an occasional CT scan. You SHOULD tell him that if MAYO CLINIC considers it "medically necessary" .. YOU QUESTION WHY he does NOT!! Linda .. YOU must be your OWN best advocate. Personally I would question just how good this guy is! Just how can he MAGICALLY see changes in your lungs may I ask?? It kinda ticks me of!! If I was sitting in your shoes I would request a phone call from this doctor .. WHEN he calls tell him exactly what I have told you .. if he gets huffy about it .. THAT is your answer. Personally I'd be looking for a better doctor who listened to me! Don't forget @windwalker Terri who is facing a lung transplant from years of doctors NOT listening to her! Forewarned is forearmed! You go girl! Hugs to all! Katherie
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2 ReactionsLindam272...here goes the summary I had on the chest CAT scan from NJH this January 2017: they listed and put info under INDICATION, COMPARISON/DATES of 2 prior Chest CAT Scans,TECHNIQUE,
FINDINGS......lower neck, Mediastnum/heart/Esophagus....Upper Abdomen.......Chest Wall.....Lungs/Pleura ....Bones
IMPRESSION
Very mild abnormality,with mild patchy groundglass in the anterior right upper lobe is mild dependent groundglass in right lower lobe.This is likely from aspiration,though non specific and could also be infectious. Typical features of nontuberculous mycobacterium are not seen in this case.
8 mm solid nodule in the left lateral sulcus is stable from February 2016 but increased compared to 2010 when it measured 3mm The location is suggestive of a parenchymal lymph node but given the increase in size could preform follow-up in 12 months.
A 7mm right apical groundglass nodule(s) (stable since2010) also be followed at that time.
Coronary calcification
Small Hiatal hernia
LUNG NODULE RECOMMENDATION
The recommendation for follow -up is based on Fleischner Society guidelines for surveillance of solid and subsolid nodules..........
The report was signed by MD "subspeciality trained in Cardiothoracic Radiology"
(Their CAT scans are reduced dose)
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This report , the preliminary results of 3 sputum samples...previous esophagram which showed decreased emptying...long history of GERD....led no doubt Dr Huitt to say My lungs were getting the NTM we have in our water pipes from aspiration from my GERD....hence I need to work on GERD precautions but did not need to take antibiotics since there is no bronchiectasis or signs of being infected by NTM.
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After 30 years of treatment for Asthma....the methocholine test determined I don't have it.
Sleep study ( Found on local brochoscopy....not typical symptoms) showed I needed CPAP machine.
No NTM grew in 8 weeks in the 3 cultures done there in 3rd. Stage of culturing.
I will return there in 2018 for Low dose CAT scan and their interpretation.....and do 3 cultures.
Tdrell
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1 ReactionLindam272....did previous Chest Xrays show anything??? Are you feelin any different ? as noted by KAtherine, did he order mycobacterium culture? TDrell
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1 ReactionThere are too many posts with this system you've changed to. The previous way was so much better!! I love this website, but it's taken over the net . Thanks so much for all your work, commadere, and Information and I look forward to changes…
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