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

I was on my condo's board, so recommend you ask if you can install whole house system at the source (which actually belongs to you, but I know condos have regulations on what/how you can install at the source). Tell them of your condition and you may get approval.

Thank you for the thought .. but we just got hit with an issue that resulted in an assessment that is beyond belief for our entire building! NO one would be interested in further costs .. thus I have done everything possible within my own little domain!

Hi Terri! You inspired me to pull out my one ice cube tray .. start freezing .. storing in a zip lock freezer bag as they harden .. now have 3 trays of cubes stored away! Yeah! Really glad I'm doing this .. defeating my purpose if I don't! Thanks for the push! Hugs! Katherine

Katemn....wow you are impressive....to have already switched to homemade ice cubes.....what a role model you are for us!
Had routine appt with local Pulmonologist.....the one who found the MAC from the washing on the bronchoscope he did in July. I said I had seen the ID dr he sent me to....and that she was ready to put me on the big 3.....but that I had explained to her that I would wait til January til I got a second opinion for my treatment from NJH Who specialized in NTM . BUt that I wanted to be followed by him and the ID dr. Not sure how he took it....especially when I explained that I was putting a hold on 2 other findings...tonsils that had grown back and possible sleep apnea.tdrell

Terri, I think you can take great comfort in the fact that you have taken GREAT Due Diligence in learning about your disease .. and that YOU are the very best judge on when/who will direct your care in your disease. If anyone I have seen on this Forum who has done their very best to learn and understand their options .. it is you. I have every confidence that you have gathered all the information you need to make the very best decision after you meet with specialists in January. Gather all the opinions .. think through them .. look at variations of opinion . question any variations of opinion for disease and treatment .. THEN make your final decision on treatment. I have not a single doubt you will do just fine.

Frankly I would be surprised if there is a big difference in MAC growth between now and January. But if I was you .. I would request a copy of the Bronchoscopy report that was done .. you will probably have to fill out some forms. I know my reports when my MAC was very active showed "Colonies-Many" then when I was better it did not. It would be helpful to you to understand just where you stand. PLUS you should request "Any and All" records from that doctor to physically carry with you to NJH. My experience has been that when your doctor's office just fax records .. I get to the 2nd opinion doctor ... and I'm told the records were "not received". Either the records went to the wrong department ..or who knows what. So now I always get a physical copy in my hot little hands and carry to any 2nd opinion appointment to avoid that problem. It is extra trouble but avoids a lot of issues.

When you decide to do it .. I would highly suggest you do the sleep apnea test. I was shocked when we found my husband stopped breathing 38 times per hour! I absolutely would have sworn he did not have an issue! Never dreamed it .. other than he snored. Now I am a BIG supporter of him using the Cpap machine .. making him read the stats on the heart attack and stroke issues of people who don't use their machine! You can google it .. it is an important thing to take care of. Keep us posted .. will be thinking of you! Hugs! Katherine

Katie I read a lot on this website about MAC and hope I don't have or ever will have this disease but it is scary to think I could! The info you give so many people is excellent to do your own research, hand deliver and keep copies for yourself of your test and doctor visits. I'm 72 but have had numerous medical issues since my 20's and have learned not to take 1-2 doctor opinions. Also what they tell you in person is worse typed on paper, like they don't want you to know the truth about your health. Is it possible I could get this disease because I recently had a Upper Endoscopy! It confirmed my suspicion that my Reflux Surgery from 2008 had come unwrapped during my Cervical Surgery of early April 2016 performed by a Neurosurgeon. I let him know within weeks post-op. He ignored me but went to a Gastro Dr myself. Been on 3 different

What's the purpose of ice trays!

Hello Cowboy, the purpose of the ice trays .. unfortunately! .. is because we have read one potential source of mycobacterium growth is in refrigerator ice makers. I am now "stable" since May 2014 and am making every possible effort to stay that way! Since we really do not know currently just how MAC is acquired for sure .. I am willing to go that extra mile to do what I can! Since starting to make the ice cubes the old fashioned way yesterday .. it really hasn't been THAT much of a hassle!

Below is an article on it: .. by the way .. how are YOU doing? Sending you a hug! Katherine
Reducing Exposure to Nontuberculous Mycobacteria
https://www.nationaljewish.org/.../NTM-TB-INSIGHTS-September-2015.pdf.aspx
by NTMI Routes - ‎2015 - ‎Related articles Sep 1, 2015 - High numbers of NTM are in refrigerator tap water and ice. In ... density aerosol (visible as a thick fog coming out of the machine) and thus are better ... Nontuberculous mycobacteria, both slow growing (SGNTM) and rapidly

Cowboy .. I felt that you did not finish this post: been on 3 different ..

What a journey you have been on!! PLEASE do think you could have MAC just by reading our site! You have had a ROTTEN experience! Thank heavens you did your "Due Diligence" and sought out a second opinion by another doctor!! NOBODY cares about you body as much as you do .. and you are given but one body in this lifetime . you darn better take care of it! Which you did! By not giving up and going for a 2nd opinion! BUT .. the ONLY way to confirm MAC is with a culture either by a sputum culture or a bronchoscopy .. AND unless you have symptoms of a lot of coughing etc .. what is your current concern?

If you truly are concerned .. your first step would be to make an appointment with an Infectious Disease Doctor .. they would be able to culture and confirm or deny if MAC is present. BUT you should FIRST ask "How many MAC patients have you treated in the past 12 months?" .. you don't want to start a journey with a doctor not knowledgeable about MAC! That would be wasted effort!

I am not a doctor but your question: "Is it possible I could get this disease because I recently had a Upper Endoscopy! " .. I just think it is apples and oranges. If you are REALLY concerned .. do the step above .. BUT don't drive yourself crazy by inferring that you are going to get every disease you read about .. that is crazy making. Put your time and energy into seeking serenity for yourself .. finding ways to "fill your cup" .. for each of us it is different. But you are 72 .. I am 73 .. we don't have forever .. we must make each day count .. make each day as fulfilling and happy as possible .. see sunshine and rainbows wherever we look .. why? Because that makes us smile and makes us happier. Find what makes you smile .. what makes you happy! I for one am sending you a BIG hUG and sharing a rainbow! Katherine

My recent Endoscopy showed my previous Reflux Surgery (Nissan Fundoplication) had come unwrapped causing my Reflux to return w the Cough and acid coming back in my throat. They put me on Prilosec first with no help whatsoever. I've been on Nexium 40 mg and Zantac 300mg about 3-4 mts with no sign of relief! My Neurosurgery said I should have the Reflux Surgery again! But I will leave that up to my 2nd opinion Gastro Dr at Mayo Clinic in December.