(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi everyone ,thank you all so much for your posts, very helpfull, and great to hear some people are in remission.

Heather,
In terms of boiling water to kill mycobacterium .. I googled "CAN MICOBACTERIUM BE KILLED BY BOILING WATER FOR 10 MINUTES " and really could not find an answer. I will contact someone wiser than I to see if I can find an answer for you. I just know that I drink the city water of Minneapolis, Minnesota, USA.

Sorry for the info on MAC not being curable .. no .. with 12 negative cultures you are considered "Stable" but unfortunately it can come back. That is why it is SO important to do everything you can do to exercise and keep your lungs as healthy as you can!

Best of luck to you .. just keep plugging along .. we are all on the same journey!
Katherine

.. I apologize for answering a message meant for Paula! You're correct ..<br />
messages are forwarded to me. If it said to Paula .. I just didn't notice<br />
it .. SORRY!<br />
* Katherine*<br />

Just wanted to let those of you wondering about the privacy of this Forum .. I received this answer:
The Lung Health group on Connect is not private. Like the American Lung Inspire Forum, messages can be read publicly. However, you have to be a registered member to post messages.

Messages are definitely NOT automatically or publicly shared on your Facebook. You can choose to share them on your Facebook page if you wish, but you have to make an extra click on the share buttons to do that. The Share buttons are found on the first page of the thread. Note the Facebook symbol on that page.

Thank you so much for your help Katherine, I have suffered hayfever allergies all my life,but as soon as I read “reactive airway disease” it rung many bells with me, I cough, get tight chested and cant expell all my breath out, when the temperature droops by 10 deg, (esp around 2am) and in cold air when walking or exercising, and when when emotionally stressed, and if I suddenly run, I am going to my doc to discuss this, I have had this all my life, thank you so much! for the coughing early morn in bed I breathe under the sheet. I also suffered alot from nasal drip and found cutting back on dairy has helped alot. It would be interesting to see how many others on this forum suffer from these.

I thought about the boiling water situation, and realised that it is creating steam which is not good for me so may get a pressure cooker and take it out side to let steam out but bacteria should be dead by then anyway, I read about it under taking precautions to prevent reinfection with MAC/MI, it was in the National Lung Institue pages http://rarediseases.org/rare-diseases/nontuberculous-mycobacterial-lung-disease/ then investigated further they say at 55 deg c it takes 20 mins to kill them I think. As we are prone to getting this infection I will try to avoid it where I can(if I can clear it in the first place), they also say to bathe instead of showering, so I do with the window open, and wear a mask when gardening and bathing in warm water.

I am NEW to this MAI/MAC "stuff". After nearly 9 months of suffering with what they thought was pneumonia and sinus-related illnesses my family doctor assumed since I was a school teacher I had been tested for TB each year. This is no longer required in the State of AR and when he did a TB test it was positive. I was immediately referred to our State Health Department who sent cultures in and I was diagnoed with MAI/MAC. This stuff is horrible! I began a regimen of 3 drugs 3 times per week and I did fine January & February on Rifampin, Clarithromycin and Ethambutol...still had bouts of nausea and feeling like I had the flu BUT NOTHING like I had when the Pulmonologist changed me from Rifampin to Rifabutin on March 8. I laid in bed screaming with leg/foot/toe cramps, had 6-8 layers of covers and heavy clothing on to keep warm, etc. Finally a week ago I called the Pulmonologist on call who took me off everything. I went in on Monday of this week for blood work and went back on Tuesday to see the APN, who was wonderful. She did a chest x-ray and I now have Acute Bronchitis and I am OFF the 3 meds and taking my last tablet of Levaquin today. Keep in mind...................I am 65 and have NEVER been sick, other than a yearly sinus infection. Now I have been sick for a year! My major question, of course, is how I got this stuff! I know it's from birds, soil, water.....BUT here is the deal. Seeing as though I have never been sick......I was bite by an autistic student at our school in December, 2014. BAD BITE! To the extent that my hand was broken and I have had to have surgery to remove scar tissue, etc. in October of 2015. It just seems "questionable" to me and my family if there is any way this disease could have been caused by this boy's bite. He has very unsanitary habits and he literally tore my hand open and even broken a booth off in my hand. I am at a total loss how I got this horrible stuff. Do you all that have this take Priobiotics, supplements, etc. I am ready to try anything to get well. I have to start up the meds one at a time for a week sometime later this week and I dread this so much! I know that my Pulmonologist says no herbs or herbal drinks while I am on the meds. IF anyone out there can refer me to anyone who might have the answer if this is bite related please respond. I have several nurse friends who are leaning in this direction but my Pulmonologist refused to even listen to me about this being related. Just seems strange that I have never been sick and 4 months after a horrible bite I get deathly ill. I look forward to hearing any comments. Thank you so much! Linda

Welcome to Connect, @digmeme.
I moved your message to this existing thread about MAI/MAC where you'll meet many others who share similar experiences and can help answer your questions.

@katemn @Paula_MAC2007 @maryke @ehliny @johnlk have you got some thoughts about @digmeme's experience?

I have been anxious to read about other people dealing with MAC. I was diagnosed in May, '15. Tried the big 3 twice.... ghastly nauseated...ended up in the hospital. Would love to know more about this disease as my doctor seems clueless. Thanks!<br />
Jan<br />
<br />

Hello Jan,
I can offer my experience with MAC. Was misdiagnosed for 2-3 years (erroneously treated for pneumonia, asthma, etc.), so the disease really had a grip on my lungs. MAC/MAI is not a disease that is commonly suspected, even by the best internists or pulmonologists. After correct diagnosis, I too was put on the big 3 drugs, taking them everyday. Like you, I was quite nauseated. My original pulmonologist (after a year he moved to a warmer climate to practice) told me about some of his patients with MAC and how they reacted to the drugs. He wanted a commitment from me to stay on them for at least 6 months. Guess after that he felt the side effects subsided. He suggested I find my own path to taking them, which was best for me -- whether all at once in the morning, spreading them out over the day, in the evening before bed. Consistency was key! He did say a few of his patients found success taking the drugs an hour before bed (with some food in their stomachs), then ‘powering down’ in bed by reading, watching TV, or meditating, etc. I tried this and it seemed to create less nausea than any other time. One unexpected side effect was that after a year the inside of my bottom teeth had turned black from coating with little ‘tar like’ bits. My dentist said that over night, the drugs were secreting out my salivary glands under my tongue, and attaching to my teeth. Was quite difficult to remove. But hard cleaning every 4-6 months takes care of it.
My pulmonologist left after a year, and I got into a new doc who locally knows the most about MAC. He works at the same large teaching hospital. The dosage of the 3 drugs is based on a patient’s weight & size, and he thought I was taking too much of one of the drugs and reduced the dosage. It reduced the nausea a little. After 4 years or so, I was feeling great and tried to go off the drugs. Five-six months later, I was very ill and my doc put me back on the 3 drugs - - but only taking them every other day since the spread of MAC had stopped. I still have to time when I take the drugs to prevent any nausea which periodically occurs especially if I am doing Barre class or Pilates soon after taking them. But I have adjusted and I am feeling so great these days! Good news is that the nausea does diminish quite a bit.
Please let me know if you have any other questions. There are quite a few people on this blog who can provide their experiences. We know what you’re going thru . . . it isn’t fun but it does get better over time. Hang in there!

Paula

Hello Linda @digmeme,
Welcome to this MAC/MAI group. Here's what my pulmonologist told me about contracting MAC/MAI. Yes it's in the air, soil, water. Many people get this, don't know it, and get over it in several days. People with compromised immune systems were getting MAC/MAI in the 1980s and it contributed to their deaths. A new manifestation of MAC/MAI has occurred in the past 15-20 years in thin, middle aged white women, and the medical community does not know why. (Personally, I think it's connected to hormones.) My doc says they've found some correlation to low Vitamin D. As to your bad bite from a child, I can't offer an opinion whether that contributed to your MAC. I do know that when MAC/MAI is not diagnoses early, and is allowed to 'take hold' in your lungs, it gets really difficult to get rid of -- it becomes difficult for antibiotics to penetrate the physical make-up of the bacteria which has a hard outer shell. But the drugs eventually do slow or stop the growth of the bacteria.
I am about your age and rarely ill except for sinus issues since childhood. I am on Rifampin, Ethambutol & Azithromycin -- dosages for my size & weight (120 lbs). Yes, the drugs made me quite nauseous. See my post below to Jan on advice from my pulmonologist on taking the meds. I am not a good person to comment about probiotics, since I have the opposite intestinal effect from the 3 drugs - - they make my system so regular and when I did go off the drugs for 6 months, my system got really screwed up. I took probiotics to no avail.