(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Hi, I have a question please. Do you cough a lot if you have MAC. If you do is the sputum clear and thick?

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@jh

I was dx’d with MAC in 1998. During the diagnosis process I was subsequently infected with another more serious infection during a bronch.
I was on 3 to 6 antibiotics for 8 years. After 2 years I no longer tested positive (sputum) for the MAC.

After surgery to remove the lobe with the other, more serious infection, I have neither.

Good nutrition, daily EXCERCISE via workouts on my tread mill to keep lungs clear, have been key. Basically, I never let it interfere with my life. Yes, sometimes I was tired particularly after my morning ‘cocktail’ of meds, but my husband was good at gently coaxing me on, and I would eventually get over the ‘hump’ and enjoy an active day.

Also key, get an adjustable bed. They are expensive, but necessary so that you don’t sleep flat, I waited years, and found I should have followed my Dr.s instructions immediately. Also, eat light at night.

but really, the huffing, puffing excersize 4 days a week, keeps the lungs clear and seems to have been (and still is) my biggest help other than the meds.

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you caught something during the bronch? I wonder if I got either the lung fungus or the nocardia from my bronch?

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Thanks! Good to know. Kathryn

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Hey, all! I’ve sent a letter to the Tampa Bay Times editor to shed light on our collective plight (eg the lack of research for more effective, less side-effective treatments) – mine was in response to a Dr. who’d written about how easily preventable Zika is amid all the hype – took advantage of the opp! If you like it, feel free to use it as a template for outreach to your own local news media…when enough of us do this, eventually someone will listen! Here’s the link to a copy of the letter I sent (toward the bottom of the page): https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=2#post-233589

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@boomerexpert…Great letter! I think you should send it to the New York Times! Seriously. Thank you for taking the time it write it! Nan

Liked by tdrell

REPLY

@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

REPLY
@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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Glad you had a good trip.  I’ve had a bronchcospy done, but results are pending yet.  The reason Lung dr suggested it was that I’ve been on the MAC 3 antibotics for almost 4 months now and I’m still having fevers in the evenings.  If this doesn’t show results they will suggest an open lung biopsy.  I’m hopingit doesn’t come to that.  I also had an ENT look at vocal chords as my voice has been ‘squeaky’ for last 4 months.  He said they were a little inflammed and he could see redness where they were irritated from coughing, but nothing else.  Did a ct scan of sinuses but all clear.  So not sure why I have a squeaky voice, but it exhausts me to talk sometimes.

REPLY
@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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I have a chronic cough but I’ve been told it was from Reflux. I had the surgery back in 2008 and the cough went away after 18 horrible years. I had silent reflux which means no symptoms and back then they didn’t know coughing was a symthom. I had cervical spine surgery in April and guess what the Surgeon must have messed up my Reflux Surgery . I know have reflux in the throat and coughing. I’m on Nexium in the am and Zantac at nite. Hopefully that will fix the problem!

REPLY
@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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Jillnc….have they ruled out perhaps a fungal infection of some sort? Terri d

REPLY
@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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jilnc, so glad to hear from you! Is your name Jill? Seems funny to refer to you as jilnc!

Interesting that you are still having fevers .. I can only speak for myself .. but that did not happen to me so have no reference. In terms of the “squeaky” .. are you on an inhaler? I am on two of them and if I don’t rinse my mouth intensively it can have a funny affect. PLUS a kind of weird thing .. after being on the 4-5 antibiotics for thirty months .. my voice was just plain not normal. I decided to google a “speech pathologist” .. when I met with him it was VERY interesting!

One of the first things he asked me was the position of my tongue .. I don’t know if it was all the months/years of coughing or what .. BUT the tip of my tongue was toward my teeth. It is SUPPOSED to be back at the “hump” kind of in the middle of your mouth. He had me do a bunch of exercises .. and today I try to be aware of that .. and my voice is back to normal. I am NOT saying that is your issue .. but am just putting it out there in case it might be of interest to you or someone else. I sure know about the exhaustion .. I think the coughing alone is just exhausting! On my trip I pointed out that I have “abs of steel” .. and that no woman of 73 should have abs of steel! But of course it is from all the years of tightening up my body to cough so much! It is very exhausting!

Please give yourself a break during this period .. rest as much as your body tells you it needs it .. just plain be kind to yourself. It is a tough time. Sending you a Big Hug! Katherine (Thanks for checking in!)

REPLY
@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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I think that is what they are hoping to find with the bronchcospy.  They did a fluid sample, brushings and a small biopsy.

REPLY
@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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No inhalers.  My tounge is forward, imo, but it’s been this way as long as I can remember.  I had speech classes in elementary school because I couldn’t pronounce s’s and z’s correctly.  But who knows the coughing could have something to do with it.  I haven’t been coughing much lately but when I do I tend to put my toung behind my lower teeth so as not to rub sore spots on the bottom/sides of my tounge when sticking it out of my nouth and coughing.

REPLY
@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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Hello cowboy .. good to hear from you! WOW! What a mess .. one fix messes up another fix! It is so hard to decide what to do in situations like yours .. the human body is so complicated .. AND surgeries get better as the years go by .. but look what happened to you!

After a severe bout of pneumonia in 2003 and a lot of meds .. I developed GERDS. I have been on Aciphex ever since. That is a LONG time .. hence I have been told that after 3 years on a PPI which Aciphex and Nexium are .. I should have my Vitamin B12 tested as needed .. as well as take magnesium supplements. You might check with your doctor and see what they say about your particular case.
Sure hope your regimen works for you .. sounds like you have been through the wringer! Thanks for checking in .. glad to hear from you! Hugs to you! Katherine

REPLY
@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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Jill, that is a GOOD point! I know that I see “Fungal Culture-Routine” on my reports .. so that is something to think about. Thanks for pointing that out! Katherine

REPLY
@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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Hmmm, Jill, that is interesting about the tongue behind the lower teeth! I developed “geographic tongue” AND Oral Thrush from all the antibiotics (despite my religious use of probiotics!) .. that I just can’t get rid of despite two rounds of prescription Oral Thrush medications.

So my tongue does get painful .. I am going to try to use your method! May be trying to teach an old dog new tricks because I have been coughing so long this way .. but boy I am sure going to try it to save my poor tongue! Thanks for the idea! Hugs! Katherine

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