Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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 - 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
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@katemn @gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about ‘horror stories’ .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON’T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine
@gggolfs, Hello GG, man this is a tough time for you. Virginia .. hmm .. would Florida be too far? Below is the info for Mayo Florida in case you might consider that. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
Also read the past pages of the post to find a :
1.GOOD Infectious Disease doctor locally. Just google it
2. call the various offices .. ask to speak to a nurse .. ask ‘How many MAC patients has your doctor seen in the past 12 months?’ If a NURSE in the office does not even KNOW what MAC is .. that is a pretty good tip off that office does NOT treat MAC patients!
3. Request an appointment with the BEST ID doctor locally you can find
4. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
5. Having read ALL the back pages of this Forum .. done your ‘due diligence’ .. educating yourself .. you will NOW have a LONG page of questions and will KNOW exactly WHAT the ID doctor SHOULD be doing for you .. or NOT doing.
GG, hope the above helps .. feel free to ask any questions .. we are here for you! Hugs! Katherine
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@tdrell Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI……multiple tests. My local pulmonologist sent me to local ID doctor in OCtober……but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks…..
I do not show indications of the infection hence do not require treatment.
The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much…I dont have the typical NTM symptoms….fatigue,chills,weight loss,fever….only the cough and mucus.
The final outcome after tests and analysis:
-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ….weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think…..had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell
Linda, because our posts are in time sequence .. wish they were not! Wish the posts were all together related to a particular question or post .. that said .. WHO were you asking this question of? Best to start with a name so the person knows who the question is being asked of. Katherine
lindam272
@lindam272
@lindam272
Posts: 180
Joined: Dec 24, 2016
@tdrell Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI……multiple tests. My local pulmonologist sent me to local ID doctor in OCtober……but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks…..
I do not show indications of the infection hence do not require treatment.
The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much…I dont have the typical NTM symptoms….fatigue,chills,weight loss,fever….only the cough and mucus.
The final outcome after tests and analysis:
-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ….weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think…..had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell
Sorry Katherine. That was in response to Terri’s check up results. Linda
Liked by Katherine, Alumni Mentor
boomerexpert
@boomerexpert
@boomerexpert
Posts: 488
Joined: May 13, 2016
@ehliny A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)
I think there’s a greater connection between GERD and MAC meds… I’ve not heard those who are asympomatic having the problem
irene5
@irene5
@irene5
Posts: 384
Joined: Oct 03, 2016
@ehliny A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)
I am sure there is a connection between GERD and MAC meds. However, there is documented evidence of a high percentage of people who have been diagnosed with GERD also having a MAC diagnosis (not from the meds). I have also discovered that the incidence for MAC is higher with people who have pectus because of skeletal structure. I pray to the good God my son doesn’t have MAC as he has lots of symptoms, and he was born with pectus. We did, however, have his repaired at Boston Children’s in 1981. – Mother’s guilt. Irene
Liked by Katherine, Alumni Mentor
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@ehliny A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)
@irene5, Irene, STOP! If all us mothers with adult children with various issues slit our wrists .. there might be few of us mothers left in the world!! I myself only gained 12 pound with a pregnancy because I was chasing around a toddler plus working .. when I produced an adult hyper active .. I also had mother’s guilt until I realized the above! So join me in realizing we did our best!! Hugs! Katherine
BUT Your info was interesting .. something I was unaware of .. thanks for the new info .. anyone interested can check into:
Principles and Practice of Infectious Diseases https://books.google.com/books?isbn=1455748013
John E. Bennett, Raphael Dolin, Martin J. Blaser – 2014 – Communicable diseases
of macrophage activation to eliminate intracellular MAC.79 MACspecific T cells … Studies have reported that 11% to 27% of individuals with MAC have pectus …
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@tdrell Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI……multiple tests. My local pulmonologist sent me to local ID doctor in OCtober……but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks…..
I do not show indications of the infection hence do not require treatment.
The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much…I dont have the typical NTM symptoms….fatigue,chills,weight loss,fever….only the cough and mucus.
The final outcome after tests and analysis:
-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ….weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think…..had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell
Thank you Linda!
boomerexpert
@boomerexpert
@boomerexpert
Posts: 488
Joined: May 13, 2016
@ehliny A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)
Unfortunately that does not indicate a clinical association between MAC & GERD. It is one of the areas in which no research has been done so any evidence is circumstantial (as is that many asymptomatic folks like me don’t have GERD). The closest thing I’ve found is a NJH article mentioning that GERD may be a cause of MAC…again, without clinical research to prove the hypothosis.
That said, the important thing, I think, is whether the treatment for GERD changes for those with MAC. Anyone found research on that?
Liked by tdrell
terryb1
@128128terry11t
@128128terry11t
Posts: 206
Joined: Jan 07, 2017
@tdrell Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI……multiple tests. My local pulmonologist sent me to local ID doctor in OCtober……but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks…..
I do not show indications of the infection hence do not require treatment.
The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much…I dont have the typical NTM symptoms….fatigue,chills,weight loss,fever….only the cough and mucus.
The final outcome after tests and analysis:
-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ….weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think…..had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell
Someone posted that he or she went to a doctor at Mt Sinai Hospital in NY who seemed knowledgeable about MAC. Please mention the doctor’s name again.Many thanks.
Liked by Katherine, Alumni Mentor
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@ehliny A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)
Boomer, Dr. Timothy Aksamit of Mayo Clinic, Rochester MN speaks all over the world on MAC .. and he told me he feels there is a connection between GERDS and MAC despite there not being proven research .. that statement is good enough for me.
Then recently Terri had this experience at National Jewish Health for MAC .. another “mecca” ..
@tdrell .. terri The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept.
I think the two experiences give us a very good feel for not discounting GERDS being connected to MAC .. since there is very little money for researching MAC .. it results in very little clinical association/research to prove the hypothesis.
Since as Terri said .. the MAC RESULTS from the GERDS .. it ends up with continuing treatment for the GERDS .. and/or treatment for MAC. Katherine
Liked by tdrell
irene5
@irene5
@irene5
Posts: 384
Joined: Oct 03, 2016
@ehliny A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)
Thank you. You’re kind! Wow – impressive, informative, and pricey book! Irene
Liked by Katherine, Alumni Mentor
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@heathert Heres an article I just found, interesting, have a look. https://www.ncbi.nlm.nih.gov/pubmed/26513209
@heathert, Thanks Heather .. good info! Hugs! Katherine
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@ehliny A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)
@irene5, Irene, I didn’t mean for you to purchase the book . . ONLY that I found it when I was googling! You might go to Amazon books and just read the book reviews on that book .. you really usually learn a lot sometimes from the reviews. Hugs! Katherine
pamelasc
@pamelasc1
@pamelasc1
Posts: 93
Joined: Feb 25, 2016
@ehliny A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)
is there any way to change the settings on my account, so that I just get the Digest at the end of each day, and/or just get responses to emails I send? I tried to work with the settings page but it does not seem to offer that choice. Pam
@katemn
In reply to @tdrell
My dear Terri! I am SOOOO happy for you .. you are just a terror when you get started .. you are unstoppable! I am SO proud of you .. and SO happy for you!! ALL A PART of you doing your ‘due diligence’ .. educating yourself .. being your best advocate .. I am so proud of you!
The ONLY question I have is .. will there be ANY follow up? Sputum tests on a semi annual basis that will be cultured? Because ‘ The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept.’ The MAC found at that time may be ‘stable’ .. but my understanding is it can colonize at any time based on many factors .. that MAC did not magically disappear .. so I just hope you have ongoing sputum cultures that verify you are STILL ‘stable’
I also have GERDS and sleep with a bed elevated .. it is a great idea! My husband has sleep Apnea .. just make sure to keep the equipment properly cleansed .. that air goes right into the lungs. Make sure you let us know how the culture report come out!
I just am SO happy for you! Thank you for all the good information and letting us know how things went! I am sending you a BIG hug! Katherine
Liked by tdrell