(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

Hello Nelisabeth, Welcome! I am SO glad you have found our Forum. You are being tossed from pillar to post by the medical community .. you MUST take control of your life and your health! You can do this by educating yourself on your disease .. .. read past pages of this Forum .. you have already been told you have a form of Mycobacterium. You have been too many places/too many doctors/too many drugs. Remember “Too many cooks spoil the broth!” No MORE!

If I was sitting in your shoes here is what I would do:
1. CONTACT BOTH THESE DOCTORS YOU MENTIONED (see below) .. ASK FOR THE “RECORDS DEPARTMENT”. TELL THEM YOU WANT A COPY OF “ANY/AND ALL MEDICAL RECORDS INCLUDING OFFICE NOTES”. Ask them what you need to do to get these copies. TELL THEM “ANY/AND ALL MEDICAL RECORDS” .. YOU ARE SPECIFICALLY LOOKING FOR SPUTUM CULTURE RESULTS! Usually you have to sign a form. If they will email you that form and allow you to sign it/scan it/email it back .. that is the quickest way to go. If they cannot .. or you are unable to do it .. ask them to mail the form to you ASAP! Start keeping a notebook of EVERY medical contact you make: name of person you spoke to/employee or extension number/date/time/phone number. If you do not get this form in a reasonable period of time .. FOLLOW UP with another phone call!

HAVE THESE RECORDS MAILED directly to you! Tell them you are getting a second opinion BUT have found the medical records get lost at the medical facility and you want ALL the records in your OWN hands so you can hand them DIRECTLY to the doctor .. no chance of them getting to the wrong doctor/wrong department etc. Be ASSERTIVE! Tell them it is for ongoing care .. do NOT agree to pay for them .. speak to a Supervisor if necessary. If they insist you pay .. then have them mailed to a local doctor you trust .. call first and get permission .. then you can later pick them up yourself for getting that important second opinion. These records will show what strain of Mycobacterium you have plus details.

test. (they also did one in hospital but said nothing about it.) Six weeks later, Dr. Pulmonary called me to come in …. told me i had Macobacterium Nebraskan ” (I wonder if this was: Mycobacterium nebraskense)
https://www.ncbi.nlm.nih.gov/pubmed/22308639

2. RESEARCH for an INFECTIOUS DISEASE DOCTOR. Call .. ask them “How many MAC patients have you treated in the past 12 months?” You want someone who KNOWS our disease! Tell them your history .. q quick recap of what you have told me. Develop a quick outline .. tell them it is URGENT to be seen ASAP .. GET THAT APPOINTMENT ASAP!
3. By this time you should have gotten your records in your hands .. go to that appointment. Request another sputum test REQUESTING a test to find out WHICH antibiotics will work against the particular stain of Mycobacterium you have. Request a Ct scan to show just where the mycobacterium is in your lungs .. PLUS to establish a baseline for the future.

YOU SAID: My N.P. said she did not think a CT/wcontrast would tell if pneumonia or MAC and my bloodwork did not call for CT. MAC IS DIAGNOSED EITHER FROM CONSECUTIVE SPUTUM TESTS OR A BRONCOSCOPY. The CT scan with contrast however WILL show what/where the lung damage is. Blood work will NOT diagnose MAC!

4. Do NOT even think about your surgery until you get this issue straightened out.

Nelisabeth, don’t give another thought to where/how/when you got MAC .. it matters NOT! Right now” put your energy into what you can control and let go of what you can’t control!” Right now get started on 1 through 4 items above .. AND do not see any more doctors pumping you with drugs without testing your sputum to see which ones will kill the bugs! I had this happen to me in 2003 with pneumonia .. before I knew better to REQUIRE they culture my sputum to see which antibiotics would work against WHICH bug! The doctor pumped me with 5 rounds of antibiotics and 3 rounds of steroids. I was SO sick! Unless you are urgently sick and need an Emergency Room .. do the above 1-4 .. and IF you get taken to the Emergency room .. have the above printed out .. and REQUIRE they follow the guidelines I’ve set above.

Good luck to you .. PLEASE keep us posted .. let us know how you are doing in this tough time. Sending you a Hug!
Katherine

REPLY
@katemn

@apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, and anyone else I forgot to make note of!

HELP!! You will note the new member @bruce668 .. Bruce .. requesting help in finding a good doctor in Asheville NC. With my terrible memory .. I only remember that one of you found a good MAC doctor in North Carolina .. PLEASE post to Bruce with that information! It certainly would be worth his time to drive a bit to work with a GOOD MAC doctor who knows what he is doing and knows our disease!

We all remember how scary it is when you are first diagnosed .. PLUS his wife was ALSO diagnosed with it. BOTH of them .. WOW .. how tough. We really need to be there for them in this difficult time .. we well know this journey .. AND around the Holidays. Let us be WHO we are .. a kind supportive community who are all on this journey together. Sending you all a Big Holiday Hug! Katherine

Jump to this post

I’m so sorry for your wife’s and your frustrations with your ability to get good care. I am having the same problems. Ive had 5 pulmonary doctors. The first was wonderful. I was coughing up blood and with in a week he did my first bronchoscopy and diagnosed bronchiectasis in may 2014. But he had to go out of the country to be with his family. The others have made me feel like my health was nothing to be concerned about. I’m in st. Louis and I’ve been to some of the best dr s at Washington university. They said i had cf , then said i didn’t but that i have non-cf lungs. Then i felt like wasn’t important to their clinic anymore. So my RA Doc and primary care Doc are tring to find an infectious
Disease specialists. Im waiting for the call this morning. Maybe you and your wife can see an infectious disease specialist. Be sure you tell them your couing up blood and need to be seen now. Sometimes they can put you in as the first or last appointments of the day. I also have splitting nails and finger tips and toe nails that resist any treatment. Iv requested 4 times to test for fungal markers in blood and went last Friday so im waiting on results before i start my big 3.antibiotics. also in need of glasses after my required eye exam before starting ethambutol. Lots to do today. Take care to you and you wife feel better really soon! YOU ARE LOVED!
Becky

REPLY
@katemn

Hello Nelisabeth, Welcome! I am SO glad you have found our Forum. You are being tossed from pillar to post by the medical community .. you MUST take control of your life and your health! You can do this by educating yourself on your disease .. .. read past pages of this Forum .. you have already been told you have a form of Mycobacterium. You have been too many places/too many doctors/too many drugs. Remember “Too many cooks spoil the broth!” No MORE!

If I was sitting in your shoes here is what I would do:
1. CONTACT BOTH THESE DOCTORS YOU MENTIONED (see below) .. ASK FOR THE “RECORDS DEPARTMENT”. TELL THEM YOU WANT A COPY OF “ANY/AND ALL MEDICAL RECORDS INCLUDING OFFICE NOTES”. Ask them what you need to do to get these copies. TELL THEM “ANY/AND ALL MEDICAL RECORDS” .. YOU ARE SPECIFICALLY LOOKING FOR SPUTUM CULTURE RESULTS! Usually you have to sign a form. If they will email you that form and allow you to sign it/scan it/email it back .. that is the quickest way to go. If they cannot .. or you are unable to do it .. ask them to mail the form to you ASAP! Start keeping a notebook of EVERY medical contact you make: name of person you spoke to/employee or extension number/date/time/phone number. If you do not get this form in a reasonable period of time .. FOLLOW UP with another phone call!

HAVE THESE RECORDS MAILED directly to you! Tell them you are getting a second opinion BUT have found the medical records get lost at the medical facility and you want ALL the records in your OWN hands so you can hand them DIRECTLY to the doctor .. no chance of them getting to the wrong doctor/wrong department etc. Be ASSERTIVE! Tell them it is for ongoing care .. do NOT agree to pay for them .. speak to a Supervisor if necessary. If they insist you pay .. then have them mailed to a local doctor you trust .. call first and get permission .. then you can later pick them up yourself for getting that important second opinion. These records will show what strain of Mycobacterium you have plus details.

test. (they also did one in hospital but said nothing about it.) Six weeks later, Dr. Pulmonary called me to come in …. told me i had Macobacterium Nebraskan ” (I wonder if this was: Mycobacterium nebraskense)
https://www.ncbi.nlm.nih.gov/pubmed/22308639

2. RESEARCH for an INFECTIOUS DISEASE DOCTOR. Call .. ask them “How many MAC patients have you treated in the past 12 months?” You want someone who KNOWS our disease! Tell them your history .. q quick recap of what you have told me. Develop a quick outline .. tell them it is URGENT to be seen ASAP .. GET THAT APPOINTMENT ASAP!
3. By this time you should have gotten your records in your hands .. go to that appointment. Request another sputum test REQUESTING a test to find out WHICH antibiotics will work against the particular stain of Mycobacterium you have. Request a Ct scan to show just where the mycobacterium is in your lungs .. PLUS to establish a baseline for the future.

YOU SAID: My N.P. said she did not think a CT/wcontrast would tell if pneumonia or MAC and my bloodwork did not call for CT. MAC IS DIAGNOSED EITHER FROM CONSECUTIVE SPUTUM TESTS OR A BRONCOSCOPY. The CT scan with contrast however WILL show what/where the lung damage is. Blood work will NOT diagnose MAC!

4. Do NOT even think about your surgery until you get this issue straightened out.

Nelisabeth, don’t give another thought to where/how/when you got MAC .. it matters NOT! Right now” put your energy into what you can control and let go of what you can’t control!” Right now get started on 1 through 4 items above .. AND do not see any more doctors pumping you with drugs without testing your sputum to see which ones will kill the bugs! I had this happen to me in 2003 with pneumonia .. before I knew better to REQUIRE they culture my sputum to see which antibiotics would work against WHICH bug! The doctor pumped me with 5 rounds of antibiotics and 3 rounds of steroids. I was SO sick! Unless you are urgently sick and need an Emergency Room .. do the above 1-4 .. and IF you get taken to the Emergency room .. have the above printed out .. and REQUIRE they follow the guidelines I’ve set above.

Good luck to you .. PLEASE keep us posted .. let us know how you are doing in this tough time. Sending you a Hug!
Katherine

Jump to this post

Oh Katherine, I cannot tell you how much this means to me! Have always been an advocate for others …. have tried to be for myself … but there is a terrible lack or lapse …. dunno .. of communication between doc to doc and computer at hospital being incompatible with other systems. aaaaaargh! so we all have been flying blind. It was already in my thinking to request a new
sputum test from the new Pulmonary doc here. I WILL DO THAT. My N.P. WILL cooperate. She is truly an advocate.
Thank you sooooooooooooooo much and yes, will see if kin figger out how to copy this off .. .if now will save. and forward to
docs. May i keep you posted? I do NOT believe i can any longer tolerate the steroids. At age 76 …. headin fer the big ol 77 ….
sometimes less is more. I so agree. Wish i could hug you in person!!!!!!!!!!!!!!!!!!! Peace …. me ol nelisabeth

REPLY

Yes ….. Nebraskanse …. sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan …. puter incompatible. nelisabeth. gittin on it TODAY! HO!

REPLY

Kay, you are SO totally correct!! In my absolute “paranoia” .. now much to my chagrin I began to try to anti mycobacterium every water source in my home! In retrospect .. SO SILLY! Luckily Dr. Aksamit brought me to my senses! Truth is NO ONE actually knows exactly how/where we get mycobacterium in our lungs. It is all over our bodies .. it is in water .. it is in the soil .. it just is NOT supposed to be in our lungs. But not enough research has been done to figure out how/why it gets in our lungs.

So my wild goose chase was silly .. fear drove me and I’m not afraid to admit it. Even if we have GERDS/reflux filtered water is not an issue/does not help. With GERDS the theory is that GERDS MAY be a breeding ground for the mycobacterium ie .. as the reflux sits there it BECOMES the breeding ground for mycobacterium. One theory only .. no one knows.

Thank you for pointing this out .. it is NOT even proven that we get iMAC/MAI from “breathing it in” showering .. just one more theory. LOTS of theories .. not one single PROVEN one. Wish there were! All we can do is take shorter showers .. no tub baths ..stay away from hot tubs .. perhaps wear a mask while gardening .. etc. The usual precautions. Hope this help? Katherine

REPLY
@katemn

Hello Nelisabeth, Welcome! I am SO glad you have found our Forum. You are being tossed from pillar to post by the medical community .. you MUST take control of your life and your health! You can do this by educating yourself on your disease .. .. read past pages of this Forum .. you have already been told you have a form of Mycobacterium. You have been too many places/too many doctors/too many drugs. Remember “Too many cooks spoil the broth!” No MORE!

If I was sitting in your shoes here is what I would do:
1. CONTACT BOTH THESE DOCTORS YOU MENTIONED (see below) .. ASK FOR THE “RECORDS DEPARTMENT”. TELL THEM YOU WANT A COPY OF “ANY/AND ALL MEDICAL RECORDS INCLUDING OFFICE NOTES”. Ask them what you need to do to get these copies. TELL THEM “ANY/AND ALL MEDICAL RECORDS” .. YOU ARE SPECIFICALLY LOOKING FOR SPUTUM CULTURE RESULTS! Usually you have to sign a form. If they will email you that form and allow you to sign it/scan it/email it back .. that is the quickest way to go. If they cannot .. or you are unable to do it .. ask them to mail the form to you ASAP! Start keeping a notebook of EVERY medical contact you make: name of person you spoke to/employee or extension number/date/time/phone number. If you do not get this form in a reasonable period of time .. FOLLOW UP with another phone call!

HAVE THESE RECORDS MAILED directly to you! Tell them you are getting a second opinion BUT have found the medical records get lost at the medical facility and you want ALL the records in your OWN hands so you can hand them DIRECTLY to the doctor .. no chance of them getting to the wrong doctor/wrong department etc. Be ASSERTIVE! Tell them it is for ongoing care .. do NOT agree to pay for them .. speak to a Supervisor if necessary. If they insist you pay .. then have them mailed to a local doctor you trust .. call first and get permission .. then you can later pick them up yourself for getting that important second opinion. These records will show what strain of Mycobacterium you have plus details.

test. (they also did one in hospital but said nothing about it.) Six weeks later, Dr. Pulmonary called me to come in …. told me i had Macobacterium Nebraskan ” (I wonder if this was: Mycobacterium nebraskense)
https://www.ncbi.nlm.nih.gov/pubmed/22308639

2. RESEARCH for an INFECTIOUS DISEASE DOCTOR. Call .. ask them “How many MAC patients have you treated in the past 12 months?” You want someone who KNOWS our disease! Tell them your history .. q quick recap of what you have told me. Develop a quick outline .. tell them it is URGENT to be seen ASAP .. GET THAT APPOINTMENT ASAP!
3. By this time you should have gotten your records in your hands .. go to that appointment. Request another sputum test REQUESTING a test to find out WHICH antibiotics will work against the particular stain of Mycobacterium you have. Request a Ct scan to show just where the mycobacterium is in your lungs .. PLUS to establish a baseline for the future.

YOU SAID: My N.P. said she did not think a CT/wcontrast would tell if pneumonia or MAC and my bloodwork did not call for CT. MAC IS DIAGNOSED EITHER FROM CONSECUTIVE SPUTUM TESTS OR A BRONCOSCOPY. The CT scan with contrast however WILL show what/where the lung damage is. Blood work will NOT diagnose MAC!

4. Do NOT even think about your surgery until you get this issue straightened out.

Nelisabeth, don’t give another thought to where/how/when you got MAC .. it matters NOT! Right now” put your energy into what you can control and let go of what you can’t control!” Right now get started on 1 through 4 items above .. AND do not see any more doctors pumping you with drugs without testing your sputum to see which ones will kill the bugs! I had this happen to me in 2003 with pneumonia .. before I knew better to REQUIRE they culture my sputum to see which antibiotics would work against WHICH bug! The doctor pumped me with 5 rounds of antibiotics and 3 rounds of steroids. I was SO sick! Unless you are urgently sick and need an Emergency Room .. do the above 1-4 .. and IF you get taken to the Emergency room .. have the above printed out .. and REQUIRE they follow the guidelines I’ve set above.

Good luck to you .. PLEASE keep us posted .. let us know how you are doing in this tough time. Sending you a Hug!
Katherine

Jump to this post

Nelisabeth, again, I am SO glad you found us!! Trust me .. I’ve through the wringer on this thing also! I am so happy for you that you see a light at the end of the tunnel! You go girl! I am age 73 and I feel we can STILL conquer the world .. just let us at it!

1. If you have “Word” a program on your computer .. just Copy and Paste to your Word program all this information
2. If not: Take the email on your computer/FORWARD/on your keyboard .. it should bring up the full email. Then: hit CONTROL AND the letter P at the same time and the email should print out.
3. If you can’t figure either of the above out . . call a techie friend and ask them how to do it?

Would LOVE to have you keep us posted. You will find the most kind caring people here on our Forum .. they have all been on the MAC journey and will travel this with you! Hugs to you! Katherine

REPLY
@nelisabeth

Yes ….. Nebraskanse …. sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan …. puter incompatible. nelisabeth. gittin on it TODAY! HO!

Jump to this post

Nelisabeth, that is WHY I want you to do the steps I spoke about. It is very common they cannot read each others scans. BUT with getting the records .. it WILL INCLUDE the FINDINGS of that SCAN!!!! That will NOT be as good as the scan itself but it will be something. That is another reason it is SO important to find ONE GOOD INFECTIOUS DISEASE DOCTOR .. and then STICK with them .. then they can see those baseline tests and watch your history as you change over time. When you skip around doctors .. they have NO HISTORY to determine if you are better or worse. Fine one GOOD one and stick with them! Good Luck! Hugs! Katherine

REPLY
@katemn

Kay, you are SO totally correct!! In my absolute “paranoia” .. now much to my chagrin I began to try to anti mycobacterium every water source in my home! In retrospect .. SO SILLY! Luckily Dr. Aksamit brought me to my senses! Truth is NO ONE actually knows exactly how/where we get mycobacterium in our lungs. It is all over our bodies .. it is in water .. it is in the soil .. it just is NOT supposed to be in our lungs. But not enough research has been done to figure out how/why it gets in our lungs.

So my wild goose chase was silly .. fear drove me and I’m not afraid to admit it. Even if we have GERDS/reflux filtered water is not an issue/does not help. With GERDS the theory is that GERDS MAY be a breeding ground for the mycobacterium ie .. as the reflux sits there it BECOMES the breeding ground for mycobacterium. One theory only .. no one knows.

Thank you for pointing this out .. it is NOT even proven that we get iMAC/MAI from “breathing it in” showering .. just one more theory. LOTS of theories .. not one single PROVEN one. Wish there were! All we can do is take shorter showers .. no tub baths ..stay away from hot tubs .. perhaps wear a mask while gardening .. etc. The usual precautions. Hope this help? Katherine

Jump to this post

…have already begun and man oh man am gittin th runaround! there is, however, NOTHING lak an EMPOWAHED WOMAN! nelisabeth and DID git printed out …. safely and attached to mah new book of evry step i take!

REPLY
@nelisabeth

Yes ….. Nebraskanse …. sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan …. puter incompatible. nelisabeth. gittin on it TODAY! HO!

Jump to this post

You are right about the scans – I get a CD and written report every time I have one done – about every three months now. What really surprised me was the I was admitted to the hospital for a biopsy of a nodule in my upper right lobe and the radiologist who was to do the biopsy hadn’t even seen my scan before I was admitted. So the information had not been exchanged between doctor and hospital before I was admitted, prepared, and hooked up ready to go in for the biopsy. The radiologist took another scan, as I’ve written before, and sent me home as the nodule had shrunk and the chance of a collapsed lung was too great.

Good news. I do know now that my A/C dusty-filled duct system was contributing a lot to my cough and weakness. Since I have had that changed out, I feel much better. Still have to keep up with the pulmonologist but I do feel better. I can not tolerate dust.

While I’m here, just a word of advice – not to just concentrate on the lungs. I let my other doctors take second place and nearly missed two pre-cancerous (Basal Cell Carcinoma) skin lesions on my face. I’ve had these cancers twice before on my nose requiring full radiation treatment (33 times each) and felt lucky I caught these in time.

Well, lets enjoy the holiday lights and hoping everyone has joy to hold on to. Kathryn

REPLY
@nelisabeth

Yes ….. Nebraskanse …. sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan …. puter incompatible. nelisabeth. gittin on it TODAY! HO!

Jump to this post

nelisabeth again … gon werry thee to deaf! HO! HOW do i find out where Dr. David Priest at Novant in Winston Salem is
the doc fer me? I liked him but was too sick to make much sense of what he said. My niece was with me and she, too, had a hard time …… we came away thinking the “bugs” were dormant.???????? another question ….. nothin ever shows up on plain x ray …. only the CT/contrast. Is there a dormancy period? okay …. off and at em!

REPLY
@katemn

Kay, you are SO totally correct!! In my absolute “paranoia” .. now much to my chagrin I began to try to anti mycobacterium every water source in my home! In retrospect .. SO SILLY! Luckily Dr. Aksamit brought me to my senses! Truth is NO ONE actually knows exactly how/where we get mycobacterium in our lungs. It is all over our bodies .. it is in water .. it is in the soil .. it just is NOT supposed to be in our lungs. But not enough research has been done to figure out how/why it gets in our lungs.

So my wild goose chase was silly .. fear drove me and I’m not afraid to admit it. Even if we have GERDS/reflux filtered water is not an issue/does not help. With GERDS the theory is that GERDS MAY be a breeding ground for the mycobacterium ie .. as the reflux sits there it BECOMES the breeding ground for mycobacterium. One theory only .. no one knows.

Thank you for pointing this out .. it is NOT even proven that we get iMAC/MAI from “breathing it in” showering .. just one more theory. LOTS of theories .. not one single PROVEN one. Wish there were! All we can do is take shorter showers .. no tub baths ..stay away from hot tubs .. perhaps wear a mask while gardening .. etc. The usual precautions. Hope this help? Katherine

Jump to this post

Katherine
Why do you say”no tub baths”? I understood tubs were ok. If we stay away from showers how are we suppose to get clean if not a bath??? Thx, maybe I read it incorrectly!

Kay S

REPLY
@katemn

Kay, you are SO totally correct!! In my absolute “paranoia” .. now much to my chagrin I began to try to anti mycobacterium every water source in my home! In retrospect .. SO SILLY! Luckily Dr. Aksamit brought me to my senses! Truth is NO ONE actually knows exactly how/where we get mycobacterium in our lungs. It is all over our bodies .. it is in water .. it is in the soil .. it just is NOT supposed to be in our lungs. But not enough research has been done to figure out how/why it gets in our lungs.

So my wild goose chase was silly .. fear drove me and I’m not afraid to admit it. Even if we have GERDS/reflux filtered water is not an issue/does not help. With GERDS the theory is that GERDS MAY be a breeding ground for the mycobacterium ie .. as the reflux sits there it BECOMES the breeding ground for mycobacterium. One theory only .. no one knows.

Thank you for pointing this out .. it is NOT even proven that we get iMAC/MAI from “breathing it in” showering .. just one more theory. LOTS of theories .. not one single PROVEN one. Wish there were! All we can do is take shorter showers .. no tub baths ..stay away from hot tubs .. perhaps wear a mask while gardening .. etc. The usual precautions. Hope this help? Katherine

Jump to this post

Kay, SO glad you mentioned this .. I was in a hurry and misspoke. Was doing this too quickly and added too many “cleaning” sources! Tub baths are fine as far as I’ve read .. don’t just keep adding hot water as you are sitting in it. Again, shorter showers .. I’ve read “For stall showers, an opening at the top of the door and a fan while showering may reduce the risk.” That sounded like good sense.

Kay, thanks for bringing that to my attention .. sometimes I am tired etc! Katherine

REPLY
@nelisabeth

Yes ….. Nebraskanse …. sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan …. puter incompatible. nelisabeth. gittin on it TODAY! HO!

Jump to this post

Nelisabeth .. I LOVE google .. all I did was google: and below is what I found.

David H Priest, MD
Address: 1381 Westgate Center Dr, Winston-Salem, NC 27103
Phone: (336) 718-0440
David H Priest, MD … Novant Health Huntersville Medical Center Novant Health Kernersville Medical Center .. . Novant Health Presbyterian Medical Center

Affiliated with Novant Health
Specialties:
Infectious Diseases
Education:
 
 
Medical School:
Wake Forest University 1999

Residency:
Wake Forest University Baptist Medical Center 2002

Fellowship:
Vanderbilt Medical Center 2004

Board Certifications:
Internal Medicine I LIKE THAT HE ALSO IS BOARD CERTIFED IN INTERNAL MEDICINE!
Infectious Disease
+++++++++++++++++++++++++++++++++++

http://health.usnews.com/doctors/david-priest-232518
https://www.google.com/search?q=Dr.+David+Priest+at+Novant+in+Winston+Salem&ie=&oe=

He must be bright because he got into good schools .. go for it! Katherine

Liked by tdrell

REPLY
@nelisabeth

Yes ….. Nebraskanse …. sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan …. puter incompatible. nelisabeth. gittin on it TODAY! HO!

Jump to this post

Nelisabeth, what you are calling a “dormancy” period .. I call “stable”. I have been “stable” meaning not on antibiotics since May 2014 .. meaning the mycobacterium are present in my lungs but are not multiplying/colonizing and my other symptoms show that I do not need antibiotics at this time. YEAH! I am NOT a doctor .. but I think the Xrays can only show up things like scarring etc .. but I don’t really know how the doctor evaluates .. I just KNOW you need a good CT scan at this point! Good luck! Katherine

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@nelisabeth

Yes ….. Nebraskanse …. sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan …. puter incompatible. nelisabeth. gittin on it TODAY! HO!

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Kathryn, what GREAT advice! Every bit of it! One of the problems with our medical system is that ONE “reader” cannot read a different kind of test. I even had that happen with a RELATED FACILITY .. main office versus branch location for getting a breast MRI. I had gotten them done at the main office downtown for years .. then a branch opened close by .. had one test done. Found out the machine a the branch COULD NOT be read by the Main office!! So that one test could NOT be compared to either my base line .. nor the previous year! Of course no one told me in advance!! Our medical system is SO SCEWED UP!! So try to have all your tests done at ONE place if you can!
Great advice all along . thank you! Happy Holidays! Katherine

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