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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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Yes, they did a CAT scan. It showed TBM which dr said is caused by chronic inflammation. That is why he ordered the Smart Vest as now it breaks up the congestion more and I can more easily cough it up. Before every time I coughed my trachea was closing which it still is but now the mucus is smaller and does come up. No, I don't cough less in Tx. I coughed every where all day and night!!!! I was on antibiotics and steroids 19 times from Dec 2015 to Dec 2016. When I would be on the meds I could function but within a wk off the meds and I would be completely down and out I would be so congested. Dr. gave me a sleep apnea test but it showed I do not have sleep apnea. . I had silent acid reflux for yrs and yrs and didn't know it so was on steroids and antibiotics off and on for at least 15 yrs. So many steroids that my veins are shot. Have to use a picc line when I'm in the hospital. I was aspirating every time I ate but didn't realize it and neither did the dr's. Because my lungs were always infected drs always thought I had asthma/COPD and that is what they were treating me for. Finally a dr ordered a barium swallow, during the test the dr said "you need surgery and you need surgery right now". He said the moment the food hit my stomach it was coming back up into my throat. That's why I got the chronic inflammation in my trachea. During the testings that had to be done before a Nissen Fundiplication surgery could be done to correct the acid reflux, it was also discovered I had a mass on my kidney. Kidney dr would not touch me before my stomach was fixed as he said I would have aspirated on the table. Nissen Fundiplication surgery was done in July 2015 and kidney removal was done in Nov. In March 2016 I also had my gall bladder out. So my immune system was very low at this time as I had 3 major surgeries in 7 mo's. When the coughing started up again I thought the Nissen Fundiplication hadn't worked so went back to surgeon who ran a series of tests and said there was no way the coughing was caused by acid reflux. My stomach was fixed and I would never even be able to throw up again. He sent me to heart dr who did another series of tests and said yes, you are 73 yrs old and have some heart problems but nothing serious enough to cause the amount of coughing you are doing so sent me back to pulmonologist who sent me to infectious dr who did a series of infusions every 8 hrs for 2 wks and when that didn't work he sent me to Dr. Adam Anderson at Washington University in St. Louis, Mo. who finally did the proper sputum cultures and discovered I have MAI. I had so many things wrong with me that the drs could not pen point exactly what was wrong. Each problem had to be weeded out, corrected and then onto the next problem. With the MAI meds and the Smart Vest I am now breathing better than I have in 10 yrs. I call it a "miracle" because I can breathe in deeply and blow out and not cough. BUT as all of you know, the side effects of the meds are not all that pleasant. I have hot flashes that sometimes are almost unbearable, I have nausea the 3 days a wk I take the meds, my muscles and joints ache all the time and I am extremely tired and sometimes have to take 2 naps a day to keep going BUT I am breathing!!!!!! I can walk 2 miles at a time, I can dance and I feel better than I have in yrs in spite of all the aches and pains. Now I can only hope and pray that when I start the testing on my kidneys and liver that God will be good to me and let the meds work and not hurt my body any more than it is already hurting.
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1 Reaction<br><br><br><br><br><br><br><br>Hi, I must have missed this, do you have the link please, I would like to read through it. I have my appt tomorrow AM. Thanks! He has 33 years of experience<br> with infectious lung disease they say so I have some hopes for this being a real doctor<br>J I will advise if he proves worthy of recommendation. I appreciate everyone being here for me,<br> it is nice to not feel alone in this.<br> <br><br><br>
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2 Reactions@becky33, Thank you for dr Anderson's information and for sharing your story. Wow I'm trying to process all of this. Life is so hard sometimes. But Im so glad that you believe and have hope in your recovery.
I take my big 3 meds all at once at 7 pm(a lower dose but everyday) to avoid some of the side effects. I too have a vest by hill rom. I use twice a day with a nebulized levalbuterol. I take mucinex 1200 mg every 12hours, spiriva respimat and proair respiclick twice a day all to break up the mucus. I have to use a brita filter water , then in a pot and boil for 10 minutes , then use 2 coffee filters to strain into a jug in the frige for drinking water.I use distilled water in a nasal saline wash twice a day . I sleep with 2 pillows on my left side to prevent silent aspiration. I had the barium and upper gi series last fall with scant amount of aspiration. Was sent to my ear nose and throat doctor, who did my balloon sinuplasty in 2015 , he said not to worry unless i felt I was aspirating and coughing alot while eating. Your coughing is a good thing because you are getting the mucus out but sometimes when it prohibits sleep i keep sore throat spray on my nightstand and just a few squirts helps me get to sleep or through a test that I have to be still for. I just finished a round of ciprofloxacin for a pseudomonus aureus and dont think it helped much.
Have your vitamin levels checked and thyroid hormones and female hormones too. I had such bad hot flashes and chills. I thought i had the flu 24 hous a day for years trying the bioidentical hormones. I finally went on hormone replacement therapy and immediately felt better. One less problem is always better. But, as you know, we can always hope for better. Thanks again for sharing and keep on dancing!!!
Becky
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1 ReactionWe installed an air cleaning system to filter out any extra dust or pollen, it really helped my Mom, as the air conditioning made her uncomfortable sometimes, she liked it warmer than before,but it did help clean the air. We also had all the air vents etc. thoroughly cleaned as well as fireplaces. We installed outside doors over all doors so that we could close the door to the house before opening the outside, sort of lots of foyers. We also had a self supporting energy system, I don't remember what they are called, so that if the electric went out it would not effect the air cleaning system or the oxygen she eventually needed, or the heating or air to make her uncomfortable. We also closed off the laundry rooms so that lint dust etc. did not enter the house. The doctor recommended these things. If you fly wearing a mask you will need a doctor's note, that you are not contagious but are preventing breathing in germs from others potentially or they can refuse to let you board. Not a good thing. Also we used all natural products for cleaning as a lot of commercial cleaning agents are toxic when breathed even in small amounts by someone with lung issues, they can cause coughing and inflammation etc... We already had water filtration just the type on the faucet that everyone has, but she always bathed never showered, so that might be a good idea, we have had patients with aspirated aspergillus which grows in showers. Hope you find a wonderful new home. And good luck and Happy Easter!
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1 ReactionFflowhplar...am curious what made you switch from NJH to Mayo? Terrid
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2 ReactionsNJH did not give a feeling of self confidence.<br>I had a episode whilst blood drawing and they had no emrgency room facility.
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2 ReactionsBecky33 you are AMAZING!!! All that you have gone thru and still remain resilient and pursuing the "right road" medically.
What Is TBM?
Some things you mention that have occurred to you ring bells with my symptoms...so I really appreciate your sharing. Thank you ! TettiD
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1 ReactionIs TBM TUBERCULOSIS MYCOBACTERIUM?
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1 ReactionCheck with your dr about long term mucinex that often. My regular dr said it can cause kidney stones and took me off of it as I was taking so much so often. I was on hormone therapy before my kidney was removed but took me off and will not put me back on because of the cancer scare. It's my understanding that the meds I take now cause the unbearable hot flashes??? Thank God, I'm not a depressed person. I have some down days but usually in a good mood just so happy that FINALLY I know what's wrong with me and looking for at least a stable time in my life in not a cure.
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2 ReactionsEveryone should watch the videos on national jewish heath website on 2016 NTM VIDEO'S and the 2015 NTM VIDEO'S. If you've watched already , watch again you may miss information the first time. Its like a full day seminar for free and you can stop and start at your lesire and take notes. Please watch by yourself or with family. On your computer or smartphone.
Becky
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3 Reactions