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@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier
https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier--Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate
held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Replies to "@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib,..."

I had the night sweats before I was diagnosed with MAC. This was one of my first symptoms. I had hot flashes when I was taken off estrogen, so much that I asked to put back on. They were miserable, but was different from night sweats. When I had those, I would wake up so wet I would have to change clothes and at times change bed linens. These got more infrequent as treatment for MAC continued.

Cila, Unison and Magnesium have always been on my med list as "over the counter" and Dr. Aksamit has never mentioned anything so I think all is well .. it has worked for me .. that is all I can say. You might also talk to your doctor about trying a different Gerds med? I know I had to try several before I found the one that worked well for me. Hugs to you! Katherine

Thanks Katherine, and also thanks to Jill, Nan, and TerriD for sharing your experiences with me. I appreciate it. I had my appointment with the respiratory specialist this morning and was surprised that he recommended no bronchoscopy and no treatment for MAC, although that is what he suspects I have, because I am fairly healthy and don't really have symptoms that are affecting my functioning. Even though I have bronchiectasis, he said that any further damage to my lungs as the result of MAC would be at the rate a glacier grows, i.e. extremely extremely slow, and that the treatment is worse than anything he suspects I would experience with the MAC and it is sometimes not successful. Has anyone else had this response from a specialist?

Fran, I hardly know what to say. I have been pondering this since last night. Even went through all your past posts. Your situation is complex living in Canada where I am not very familiar with your medical options but I understand they are more limited than in the USA.

Bull that the treatment is worse than anything he suspects you would experience with the MAC and "sometimes not successful" .. what a ninny! .. you know from reading our Forum that we all are surviving and MOST of us THRIVING .. phooey to him! Sorry .. but sound like dollar savings to me .. just my opinion .. sorry.

This is just ME .. but even if I felt just GREAT .. but with what you have told us .. I don't think I could sleep well at night until/unless I had gotten a second opinion from a Pulmonologist who specialized in MAC .. and/or had numerous MAC patients in the past 12 months. Who had done a bronchoscopy for me .. had the results cultured .. done a CT scan AND then gathered all the resulting information .. AND THEN had told me I did not need MAC treatment. I would THEN do a little dance of joy and go on with my life again feeling just great! But this is just me with my doing my "due diligence" and being a toughie!

I do not know if your financial situation allows you to travel to the USA for obtaining a second opinion? If not .. I just did the good old google! Google it YOURSELF .. and educate yourself to your Canadian options!! You may have to be your OWN best advocate .. be assertive .. in a nice positive way .. remember .. you get more with honey than vinegar .. BUT also remember "The squeaky wheel gets the oil"!! NOBODY cares about your body more than you do .. AND you are given but one body in this lifetime .. if YOU don't take care of it .. WHO will?!

I just googled: CANADIAN MEDICAL RIGHTS TO A SECOND OPINION. I came up with .. that you might research:
https://www.cmpa-acpm.ca/-/when-a-patient-seeks-a-second-opinionhttp://healthydebate.ca/personal-health-navigator/youre-doctor-wont-send-second-opinion
and then research you need to google the above statement some more .. AND then get moving with your due diligence .. IF that is what works for you .. AND that is what you want to do. It is YOUR life and your journey .. only you can decide the direction you want to take. We will all be there for you whatever you decide to do. Hugs to you! Katherine

Katemn....bravo to your response to Fran!!!

Terri, you know me .. I can only speak from my heart. Can't fake it! Hugs to you! Katherine

Hello @fransky,

The respiratory specialist you saw today SUSPECTS you have NTM or MAC, and recommended no bronchoscopy and treatment for MAC. It seems you don’t have a definitive diagnosis. Did he tell you on what he based this probable diagnosis? What did he use to get this conclusion? If it’s not concrete evidence, I would ask for more testing to be sure. Could be several other things besides NTM.

For those actually diagnosed with NTM or MAC and not having symptoms – like you – not being started on treatment is pretty common. Did you know that many people contract NTM or MAC and get over it without treatment? That many people get it, don’t even know we have it, our bodies adjust and we get over it. So we don’t all need treatment (thankfully!) And yes, there is slow growing NTM, fast growing NTM as well as many types.

With a CONCRETE DIAGNOSIS of NTM or MAC, I can understand why your respiratory specialist would take a ‘wait and see’ approach, with your having no symptoms. Offhand, I don’t know what other health problems you have or the medical care in Canada. But I would ask your respiratory specialist for a ‘game plan’ . . . will you be watched for symptoms? at what point would treatment be warranted? will you get a CT scan again in a year to compare the growth or shrinkage of NTM, etc etc. Just my 2 cents worth!

Take care, and let us know what follow-up you get. Seems you need more discussion with your respiratory specialist or a 2nd opinion.
Paula

Thanks so much for your thoughtful response, Katherine. It means a lot to me. I have been a little muddled this weekend, trying to think things through. I do have a lung functioning test coming up, and a follow up with my infectious disease specialist, so he may have a different opinion than the respiratory specialist. I will see what transpires from that. but in the meantime, am focusing on trying to stay as healthy as possible. I appreciate being part of this site and the connections made. I feel very supported.

Hello Fran, so glad you are seeing you ID specialist .. make up a list of questions based on your thoughts and concerns and then do your due diligence. Make copious notes when you see him .. tell him exactly what the other doctor told you .. AND why that concerned you. Tell him what/how you would like to proceed FOR YOUR peace of mind .. see if the two of you are on the "same page" and he is willing to do what it takes to make sure you are at peace with your situation.

Please let us know how the appointment goes .. this may be your best shot at getting a good answer .. so do your level best to be well prepared. Frankly I have found on our Forum that many of our members have educated themselves about our disease to a greater degree than some of the doctors they have visited! So read up and know what tests and procedures would give you peace of mind .. and push for what you feel you need ..IF you feel you need them! You absolutely do NOT want unwarranted tests or procedures .. just the right and necessary ones. You are SO right about focusing on staying as healthy as possible until your appointment .. eat well .. exercise as much as you are able .. be kind to yourself .. and seek serenity! Sending you a hug! Katherine

I have had lots of pain in my leg after hip replacement,today I tried 450 mg of magnesium citrate and I can feel the benifits already.
I will continue and update in a week to see if it continues.