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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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I read posts every day but don't feel knowledgeable enough to offer advice. I'm still learning all about this. If I think I can ever be of any help or support to anyone I would certainly do so. I hope your husband gets well soon and you take care of yourself as well too. Gina K
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1 ReactionA good internist will have answers so you mustn't stop until you find one, difficult as I can imagine that is right now. Sounds like one of two things: auto-immune disorder; food, medicine, or other allergy. This may be a stretch but check it out: https://patient.info/health/angio-oedema-leaflet
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1 ReactionQuite possible...recommend seeing a nutritionist - good one can find the answers
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1 Reaction<br><br><br><br><br><br><br><br>Hi Paula, and thank-you for your reply and kind concern. No I usually go to the doctor when I get sick, not as a habit. However I work for a major hospital,<br> and believe me I could write a book now on how not to treat patients. The first PCP they gave me literally smelled like a homeless person and appeared to be recovering from a bad night, I was afraid of him, he told me that nothing was wrong with me that I<br> was a drug-seeker. I went to the competition hospital, where I had neurosurgery for my back and a brace for my arm. Nothing wrong? Then they gave me to Internal Medicine, they gave me penicillin which it clearly states and I told them I am allergic too, lovely<br> 10 hours in the ER, next I had a new IM whom told me that ticks don’t carry disease, I had rocky mtn spotted fever and once again went to one of our satellite clinics after a friend who was a doctor in China for 30 years called and told them that she took<br> the tick off she saw the red bulls eye that there were 9 ticks and they had better get some doxy in my as soon as she arrived with me, as she can’t write in this country, they did or I would have been in ICU or dead. A good doctor is very difficult to find,<br> especially around here it seems, and I am literally surrounded by them. Today I went to a new PCP who was only interested in treating my sinus infection and my pneumonia. I will not even begin to tell you how unhappy I am with him. I asked him to please show<br> me my Xray, and to point out the pneumonia, he mis-identified it, I showed it to him, he took the laptop away, so I asked him to just answer one question, if I had this as the other CST and the report states over a year ago and it is and was pneumonia, then<br> why do I still have it, same just worse? I would not have lived this long with such severe bi-lobar pneumonia, I mean both lungs are about 50% full of something. His answer was “I can’t answer that.” They seem to have told me that my CST was normal and fine,<br> nothing wrong, and there was a doctor friend standing right beside my bed when they told us both that, witness. Ut-oh. Yes the infection is clearly there and it is MAC, there could be some Pnue in there also, but my mother and my aunt both died of MAC and<br> I am very familiar with it. But, I agree with you something else is seriously very very wrong. They had given me an allergy medicine that can cause liver and or kidney failure, or congestive heart failure, it is daily, that is when the fluid retention started<br> and everything else, after I had been on it for 6 weeks, he said that was exactly what was going on. But their tests showed that everything is fine. Well it is not fine, and neither was my CST, which was also called fine. And some of my friends (doctors) want<br> to know about my butterfly face, my Aunt also had Lupus, and my mother and I both had/have Hashimoto’s. The Lupus department would not give me an appt. I just need to know “where have all the doctor’s gone?” He wants to see me for a yearly physical in 6 weeks,<br> I told his nurse she can make the appt. and when I end up in the ER prior to that I will call and cancel or have someone do so for me as the case may be, I have already gone anaphylactic once in the last 6 months. I am beginning to think I will just find a<br> good herbalist or maybe a witch doctor, LOL. And yes I thought tumor, but the weight is sometimes gone, at least the huge pregnant belly, it will be totally flat for a day or so, and then 9 months again, and it varies throughout the day, and it includes my<br> legs and feet, ankles, and now arms, face and chin. I don’t think a tumor would shrink and then grow back? But I will look into that. Thanks for this email being here when I came in I really had one of the worst days of my life, everything went wrong, I even<br> lost my only set of car/house keys for over an hour, will make dups tomorrow. At least I had a kind person here for me, that would be you, and I thank you so very very much, just to have someone to talk to, I can’t tell my co-workers or my friends I don’t<br> want sympathy or anything to be different with them, and my dog says he still loves me even if we can’t go for but really short walks and not every day, that is what hurts the most, to let down those that depend on me. Bless you!<br> <br><br><br>
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1 ReactionThis is 21042(kathi) So sorry youre having a difficult time with doctors a d hospital. Im blessed to live in this wonderful retirement town with excellent caring and knowlegeable doctors. Dont give up, keep fighting them til you get answers. I will be praying for you. Im new on this forum and dont have much advice to give anyone but i've been helped to hang on when i almost gave up. The meds made me so sick i wanted to die, but after a month, im doing just fine. I drink an energy shake every day and this has stableized my weight after losing 12 pounds. Get lots of rest and let your little dog love on you.
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1 ReactionHello again @ijustdontbreathewell - I really feel for you . . . your post sounded so like you've had one of the worst days ever! I understand about auto-immune diseases - my father had Scleroderma, his sister had severe Lupus (from which she died rather young), etc. These can have genetic tendencies and can really wreak havoc on your system. You obviously are ill. If I were you, I'd find a good internist NEXT WEEK and establish a relationship with him/her. Get a thorough work-up and testing. And stick with him/her ... so as you get older, you'll have a good doctor that will know your health history. I've had fabulous doctors, including two excellent women internists. Do you have a teaching hospital near you? They provide excellent physicians.
I chuckled when you wrote that "my dog says he still loves me". On the bright side, you've got a good sense of humor!! Hang in there. Keep us posted.
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2 Reactions<br><br><br><br><br><br><br><br>Thanks Kathi, <br><br>I am newer than you so you are older than me here<br>J<br><br>I would be so happy to be a size 2 again, if the swelling would just go away, my mom was always tiny and so was my Aunt so I guess I never noticed them losing<br> weight., or perhaps they were ones that didn’t. They were always tiny and delicate and ephemeral, and I am just the opposite fiery and energetic and athletic, well I was, now I am just tired and mean as a snake<br>J Sort of sound like one also LOL.<br>Thanks for cheering me up, I am a workaholic, guess that is why those that do so little really make me mad, all she had to say was, it’s a child, and I said<br> be right there and here I am…I expect that is the commitment we make no matter how large or small our part is in the healing?, so when others think it is the most money for the least work, 8-4, they are a number, it really ticks me off. But I think I will<br> take your advice and go home and just curl up with my ShitTzu and try to sleep, I can always stop at the drugstore, that bloomin idiot did not even give me cough syrup and I haven’t slept for days for choking when I try to sleep, “where have all the doctors<br> gone??” I will find someone to find out what is wrong but it looks like I am going to be firing a lot of frogs along the way. At least I am learning to fight smart.<br> <br>Thanks, sweet dreams, and go eat an entire carton of Hagen Daz with chocolate syrup and nuts and fruits and whipped cream!!!! Do it so I can live vicariously!!<br> <br> <br><br><br>
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1 ReactionGood luck Katherine with you husband - hope he recovers quickly.... Josephene xo
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1 ReactionHi @tdrell I am looking at a 12 hour flight, I was planning to wear a mask, was just wondering if you wore a mask on the plane? Or if anyone else out there has tried wearing a mask on a plane and weather it worked to prevent bugs?
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1 ReactionI was just diagnosed with Mac after spending a week in the hospital with flu b and had a bad cough went to see pulmonologist and put me on inhalers and neubulizer breathing treatments at home.Sent out sputum to check for TB and told me I have Mac! Scared not coughing anymore??? Wants to start antibiotics on Monday??
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