(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

@colleenyoung

Such great news @jamesoz. Good for you! Thanks for taking the time to come back and share good news here on Connect.

I was resistant to wearing a fitness tracker, but recently I won a Basis watch. It has got me moving more and more. My sleep patterns have also improved. I no where near your fitness activity yet, so thank you for the inspiration. Exercise has always been my go to cure all. It feels good to get back to it.

PS: I should introduce myself to you and everyone I’m this thread. My name is Colleen and I’m the new Community Director for Mayo Clinic Connect. I look forward to getting to know you all.

Jump to this post

Hi @melissa23,

You have a number of separate, yet related, issues going on here. Let me help connect you with appropriate Connect members in the right places within the community.

1. Medical care in the military setting – I suggest you start a new discussion in the Just Want to Talk group here: https://connect.mayoclinic.org/group/other/#/!tab=stream You could title it “Getting medical care in the US military” or something similar that would let people know what you wish to discuss. You should be able to get copies of all medical tests done, including CT scans.

I’ll then bring Connect members who have military service experience to join the discussion.

2. You said you are “dealing with people down here who have no clue what MAC is” – I think there are several people sharing in this discussion thread that have experienced this, as well as misdiagnosis.

@dixer @Paula_MAC2007 @suttonmac2009 @katemn can you help provide insight into Melissa’s question: “Based on your experience, is there really anything that can be accomplished in ONE appointment for a MAC infection?”

Melissa, I’m glad that you have at least been able to secure a second opinion and hope the community can help you prepare to get the most out of these 2 appointments.

Colleen
Connect Community Director

PS: Let me know if you need help starting a new thread in Just Want to Talk.

Liked by Melissa23

REPLY

Further to the induced sputum testing that I am undergoing at the military hospital (on a daily basis, because they won’t accept my sputum that I readily produce on my own first thing in the morning when I awaken) I came across a pamphlet from the DoD titled “Speak Up!” …. and that is what I did. I composed a letter to the hospital administrator, my primary care manager and the patient advocate supervisor essentially demanding that they blow their noses and smell the roses 🙂

I feel as though I cracked a rib or a vertebrae yesterday with all of the forced coughing, back pounding, and thirty minutes of inhaling saline solution and they want me to do it again today. Of course none of these individuals have responded to me yet, but I also BCC’ed by Congressman’s office on the e-mail. I invested in a back brace for my thoracic cavity in addition to the lumbar brace that KateM recommended sometime ago. If it had not been for these two apparatus, I would not be sitting up straight this morning. Too make matters worse, I am suppressing all coughs this morning so that I can just march in there, produce a sputum sample then leave – my lungs feel so heavy and burdened.

THANK YOU COLLEEN for your response! I believe I have my questions in order for my appointment with UNC tomorrow. They are starting with a breathing test before I see the doctor. From there I hope to review my CT and X-rays with them for their definitive opinion of my condition based on these along with my documented clinical signs (cough, fatigue, fever, night sweats, dyspnea) and the 15+ positive AFB sputum cultures/smears over the past year. These are the standards for diagnosing a MAC infection according to the American Thoracic Society / Infectious Disease Society of America –

I plan to ask:

Is there are any other Criteria for diagnosing MAC Infection vs. Colonization?

Is Colonization of MAC just ignored if Radiographic results slowly evolve with demonstration of growth?

What effect would the treatment of five to six months of Isoniazid (for the misdiagnosis of TB) have on Mycobacterium avium?

What effect would treatment of five months of Azithromycin and Rifampin have on MAC if treatment with the same drugs were to resume nearly 7 months to a year later?

Would a MAC infection cause an extremely elevated Ribonucleoprotein (RNP) result and positive ANA? (As professed by my military doctors)

Has the damage in my lungs progressed since the first imaging of 2011 compared to the imaging of 2015?

What genetic tests can be performed to understand my susceptibility to MAC since I am NOT HIV+?

Do I have a deficiency of IFN-gama and TFN-alpha production and/or the absence or defects of IFN-gama receptors?

Does UNC have access to a enzyme immunoassay (EIA) kit to detect serum IgA antibody to MAC-specific glycopeptidolipid core antigen? (useful for serodiagnosis of MAC pulmonary infection)

What effect would high titers for certain viruses (i.e. Coxsackie B -left untreated by the Army) have in conjunction with MAC? – I have had two heart catheter ablations and left with medication that does not work and only inflames my Raynaud’s disease.

Do I have scoliosis, pectus excavatum, or straight back? – skeletal markers for pulmonary MAC infection.

Why would a BAL be performed of only one lung (and not both) during a bronchoscopy?

Is it imperative to determine what species of Mycobacterium avium I have, Mycobacterium avium or Mycobacterium intracellulare.for proper treatment? Furthermore, is properly identifying the subspecies then of importance for treatment? “The one most likely to cause disease in humans is M avium subspecies hominissuis” followed by M avium subspecies avium, then M avium subspecies paratuberculosis, and finally Mycobacaterium intracellulare (Kasperbauer, & Daley, 2008)

These are some of the questions I have for my team of doctors (Rheumatology, Pulmonary disease and Infectious disease) at UNC, that I will address.

If anybody can think of others, please advise. THANK YOU 🙂

Best wishes,
Melissa

REPLY
@melissa23

Further to the induced sputum testing that I am undergoing at the military hospital (on a daily basis, because they won’t accept my sputum that I readily produce on my own first thing in the morning when I awaken) I came across a pamphlet from the DoD titled “Speak Up!” …. and that is what I did. I composed a letter to the hospital administrator, my primary care manager and the patient advocate supervisor essentially demanding that they blow their noses and smell the roses 🙂

I feel as though I cracked a rib or a vertebrae yesterday with all of the forced coughing, back pounding, and thirty minutes of inhaling saline solution and they want me to do it again today. Of course none of these individuals have responded to me yet, but I also BCC’ed by Congressman’s office on the e-mail. I invested in a back brace for my thoracic cavity in addition to the lumbar brace that KateM recommended sometime ago. If it had not been for these two apparatus, I would not be sitting up straight this morning. Too make matters worse, I am suppressing all coughs this morning so that I can just march in there, produce a sputum sample then leave – my lungs feel so heavy and burdened.

THANK YOU COLLEEN for your response! I believe I have my questions in order for my appointment with UNC tomorrow. They are starting with a breathing test before I see the doctor. From there I hope to review my CT and X-rays with them for their definitive opinion of my condition based on these along with my documented clinical signs (cough, fatigue, fever, night sweats, dyspnea) and the 15+ positive AFB sputum cultures/smears over the past year. These are the standards for diagnosing a MAC infection according to the American Thoracic Society / Infectious Disease Society of America –

I plan to ask:

Is there are any other Criteria for diagnosing MAC Infection vs. Colonization?

Is Colonization of MAC just ignored if Radiographic results slowly evolve with demonstration of growth?

What effect would the treatment of five to six months of Isoniazid (for the misdiagnosis of TB) have on Mycobacterium avium?

What effect would treatment of five months of Azithromycin and Rifampin have on MAC if treatment with the same drugs were to resume nearly 7 months to a year later?

Would a MAC infection cause an extremely elevated Ribonucleoprotein (RNP) result and positive ANA? (As professed by my military doctors)

Has the damage in my lungs progressed since the first imaging of 2011 compared to the imaging of 2015?

What genetic tests can be performed to understand my susceptibility to MAC since I am NOT HIV+?

Do I have a deficiency of IFN-gama and TFN-alpha production and/or the absence or defects of IFN-gama receptors?

Does UNC have access to a enzyme immunoassay (EIA) kit to detect serum IgA antibody to MAC-specific glycopeptidolipid core antigen? (useful for serodiagnosis of MAC pulmonary infection)

What effect would high titers for certain viruses (i.e. Coxsackie B -left untreated by the Army) have in conjunction with MAC? – I have had two heart catheter ablations and left with medication that does not work and only inflames my Raynaud’s disease.

Do I have scoliosis, pectus excavatum, or straight back? – skeletal markers for pulmonary MAC infection.

Why would a BAL be performed of only one lung (and not both) during a bronchoscopy?

Is it imperative to determine what species of Mycobacterium avium I have, Mycobacterium avium or Mycobacterium intracellulare.for proper treatment? Furthermore, is properly identifying the subspecies then of importance for treatment? “The one most likely to cause disease in humans is M avium subspecies hominissuis” followed by M avium subspecies avium, then M avium subspecies paratuberculosis, and finally Mycobacaterium intracellulare (Kasperbauer, & Daley, 2008)

These are some of the questions I have for my team of doctors (Rheumatology, Pulmonary disease and Infectious disease) at UNC, that I will address.

If anybody can think of others, please advise. THANK YOU 🙂

Best wishes,
Melissa

Jump to this post

WOW!! Melissa, I am SO impressed!! Truthfully I do not even KNOW what all the above means!! You certainly have done your “due diligence” and have gone into this well prepared! This is just GREAT! The only other thing I would tell you is that my second Mycobacterium that was found through sputum culture was found to be: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES.

The only other thing I would say is to go into this meeting tomorrow with strength but a positive attitude .. remembering as your grandmother always said “you get more with honey than with vinegar” .. BUT being very clear you mean business. That you are only given one body in this lifetime and you tend to take care of it! That you will NOT take “NO” for an answer.

I have never forgotten an article I read many many years ago about a woman that went to SEVENTEEN doctors before she received a proper diagnosis .. that story stuck with me ever since. You just fight for yourself and NEVER give up .. you are doing a GREAT job!

REPLY
@melissa23

Further to the induced sputum testing that I am undergoing at the military hospital (on a daily basis, because they won’t accept my sputum that I readily produce on my own first thing in the morning when I awaken) I came across a pamphlet from the DoD titled “Speak Up!” …. and that is what I did. I composed a letter to the hospital administrator, my primary care manager and the patient advocate supervisor essentially demanding that they blow their noses and smell the roses 🙂

I feel as though I cracked a rib or a vertebrae yesterday with all of the forced coughing, back pounding, and thirty minutes of inhaling saline solution and they want me to do it again today. Of course none of these individuals have responded to me yet, but I also BCC’ed by Congressman’s office on the e-mail. I invested in a back brace for my thoracic cavity in addition to the lumbar brace that KateM recommended sometime ago. If it had not been for these two apparatus, I would not be sitting up straight this morning. Too make matters worse, I am suppressing all coughs this morning so that I can just march in there, produce a sputum sample then leave – my lungs feel so heavy and burdened.

THANK YOU COLLEEN for your response! I believe I have my questions in order for my appointment with UNC tomorrow. They are starting with a breathing test before I see the doctor. From there I hope to review my CT and X-rays with them for their definitive opinion of my condition based on these along with my documented clinical signs (cough, fatigue, fever, night sweats, dyspnea) and the 15+ positive AFB sputum cultures/smears over the past year. These are the standards for diagnosing a MAC infection according to the American Thoracic Society / Infectious Disease Society of America –

I plan to ask:

Is there are any other Criteria for diagnosing MAC Infection vs. Colonization?

Is Colonization of MAC just ignored if Radiographic results slowly evolve with demonstration of growth?

What effect would the treatment of five to six months of Isoniazid (for the misdiagnosis of TB) have on Mycobacterium avium?

What effect would treatment of five months of Azithromycin and Rifampin have on MAC if treatment with the same drugs were to resume nearly 7 months to a year later?

Would a MAC infection cause an extremely elevated Ribonucleoprotein (RNP) result and positive ANA? (As professed by my military doctors)

Has the damage in my lungs progressed since the first imaging of 2011 compared to the imaging of 2015?

What genetic tests can be performed to understand my susceptibility to MAC since I am NOT HIV+?

Do I have a deficiency of IFN-gama and TFN-alpha production and/or the absence or defects of IFN-gama receptors?

Does UNC have access to a enzyme immunoassay (EIA) kit to detect serum IgA antibody to MAC-specific glycopeptidolipid core antigen? (useful for serodiagnosis of MAC pulmonary infection)

What effect would high titers for certain viruses (i.e. Coxsackie B -left untreated by the Army) have in conjunction with MAC? – I have had two heart catheter ablations and left with medication that does not work and only inflames my Raynaud’s disease.

Do I have scoliosis, pectus excavatum, or straight back? – skeletal markers for pulmonary MAC infection.

Why would a BAL be performed of only one lung (and not both) during a bronchoscopy?

Is it imperative to determine what species of Mycobacterium avium I have, Mycobacterium avium or Mycobacterium intracellulare.for proper treatment? Furthermore, is properly identifying the subspecies then of importance for treatment? “The one most likely to cause disease in humans is M avium subspecies hominissuis” followed by M avium subspecies avium, then M avium subspecies paratuberculosis, and finally Mycobacaterium intracellulare (Kasperbauer, & Daley, 2008)

These are some of the questions I have for my team of doctors (Rheumatology, Pulmonary disease and Infectious disease) at UNC, that I will address.

If anybody can think of others, please advise. THANK YOU 🙂

Best wishes,
Melissa

Jump to this post

Fabulous work Melissa. I love @katemn‘s grandmother clause “you get more with honey than with vinegar” but to be strong.

You’ve prepared a lot of great questions, but also remember to be prepared to listen/hear the responses. Do you usually bring pen and paper (or electronic device) and take note? I always do. I also recommend repeating back what you heard so that you and your doctor can ensure you both heard and interpret things the same way.

We’ll be thinking about you tomorrow.

Liked by Melissa23

REPLY

Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and paper to record everything I am told .. then when I get home I type it up in greater detail while I still remember it because at the appointment I usually am just kind of writing the basics without filling out all the details.

Also really like the idea of a recorder .. after requesting permission .. perhaps using the excuse you may not remember everything .. or can’t write fast enough etc. Also like the repeating what you are told .. I have found in the past .. due to my more limited medical knowledge I misinterpreted something .. only discovering it through further discussion.

Good luck! Please let us know how it goes .. our thoughts will be with you!

REPLY
@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

Jump to this post

Lainey, I am in Milwaukee (southeast Wisconsin) and not Florida. I go to the best teaching university & affiliated hospital around, and see the specialist in MAC. I’m about 6+ hours from the Mayo Clinic, and if I didn’t go to such a great doctor and teaching hospital, I’d go to Mayo. My pulmonologist told me several years ago that Mayo Clinic was doing a study on patients with MAC; don’t know the outcome of that. Seems all of us here are not the ‘typical’ people with this nasty disease – – we’re not immune compromised (having organ transplant, AIDS, etc). Sure wish there was a study for the common factors among us, that we ended up with MAC for years.
Someone here recently mentioned they found exercise so helpful with MAC and why doesn’t the medical profession push exercise. I think the medical profession is way behind when it comes to the benefits of exercise! I asked my pulmonologist why he doesn’t write a prescription for Pilates or yoga or some exercise to promote enhanced breathing. He said they felt most women like me do some form of exercise like yoga. Really??
I’m glad to report that I am having the best health this winter than I’ve had in 8-10 years. Plenty of exercise, rest, and taking my 3 meds every other day.

melissa23 – I’ve read your blog posts; boy, the VA is not doing right by you! Several others here have posted their thoughts on what to do when you see your doctors next! PLEASE keep us posted! Will be crossing my fingers for you.

Liked by tdrell

REPLY
@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

Jump to this post

Paula and Melissa, I would tell you that it depends on the doctor re:
exercise. My beloved Dr. Aksamit at Mayo Clinic, Rochester MN asks me
EVERY visit about my level of exercise .. and encourages me because of the
beneficial affects on my lungs and overall health. This even when
I was not/felt I could not exercise due to the back pain resulting from the
horrific coughing. He just kept quietly encouraging me to exercise.

So I began again in May .. doing really well on my Nordic Track and yoga ..
but hurt my back again with a DUMB move with a Kettle Ball exercise! Now
after steroids, physical therapy etc I am hoping to get back to my exercise
program .. encouraged by my Pulmonologist!

*Interesting about the Mayo MAC/MAI study .. I have not been invited to be
a part of?! Oh well.*

Liked by Paula_MAC-2007

REPLY
@katemn

Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and paper to record everything I am told .. then when I get home I type it up in greater detail while I still remember it because at the appointment I usually am just kind of writing the basics without filling out all the details.

Also really like the idea of a recorder .. after requesting permission .. perhaps using the excuse you may not remember everything .. or can’t write fast enough etc. Also like the repeating what you are told .. I have found in the past .. due to my more limited medical knowledge I misinterpreted something .. only discovering it through further discussion.

Good luck! Please let us know how it goes .. our thoughts will be with you!

Jump to this post

Thank you Ladies. My appointment with the UNC Pulmonary Clinic went very well. The doctors and technicians were awesome, insightful and offered some insight into my condition that was being overlooked. I am immediately being tested on their end from my sputum (non induced) for AFB and my spirometry / pulmonary function tests show a significant decline compared to tests that were conducted in AUG of 2015. With the production of sputum (which is most likely still AFB positive), along with the CT and X-ray imaging they reviewed showing progression of scarring/nodules, etc. from 2011 – 2014 (the disc did not have any 2015 images on it) I was once again officially re-diagnosed with a MAC infection. The problem now lies in the potential that the MAC is now resistant to the antibiotics. So…. A test is going to be conducted on the sputum to measure its resistance to the antibiotics. I follow-up in May to most likely resume antibiotic treatment. In the meantime, I will continue with exercise and begin the use of a ‘flutter device’ to assist in getting the phlegm out of my lungs.

Next week I see the ID doctor at UNC and I will take more sputum to that appointment for analysis >_< More to follow. Hope everyone is breathing well and ready for Spring! Best wishes to all. Melissa

Liked by Paula_MAC-2007

REPLY
@katemn

Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and paper to record everything I am told .. then when I get home I type it up in greater detail while I still remember it because at the appointment I usually am just kind of writing the basics without filling out all the details.

Also really like the idea of a recorder .. after requesting permission .. perhaps using the excuse you may not remember everything .. or can’t write fast enough etc. Also like the repeating what you are told .. I have found in the past .. due to my more limited medical knowledge I misinterpreted something .. only discovering it through further discussion.

Good luck! Please let us know how it goes .. our thoughts will be with you!

Jump to this post

Melissa, I am SOOO happy for you .. in terms of finally getting some
answers! At least for me .. just understanding my situation and getting a
proper diagnosis gave me so much more serenity. Really glad they are
checking for antibiotic resistance .. I forgot that piece. Mayo did that
for me to make sure the 5 antibiotics they prescribed for me were the
correct ones for my particular mycobacterium .. AND that I was not
resistant to them. I am so glad they are being pro active!

Just keep up the good work and you WILL come out on the other side! It
took me 30 months on the antibiotics but I am negative for now .. and
remain positive! Good luck and keep us posted!
* Katherine*

Liked by Melissa23

REPLY
@katemn

Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and paper to record everything I am told .. then when I get home I type it up in greater detail while I still remember it because at the appointment I usually am just kind of writing the basics without filling out all the details.

Also really like the idea of a recorder .. after requesting permission .. perhaps using the excuse you may not remember everything .. or can’t write fast enough etc. Also like the repeating what you are told .. I have found in the past .. due to my more limited medical knowledge I misinterpreted something .. only discovering it through further discussion.

Good luck! Please let us know how it goes .. our thoughts will be with you!

Jump to this post

@melissa23 This is great news. The first few sentences of your message are almost like music to my ears. It sounds like you were listened to and given time to talk, listen and get checked thoroughly. And you have an action plan! May the Spring bring easier breathing.

REPLY

Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you feel better. I find it strange that the VA docs you’ve seen have you trying to cough up sputum ‘on demand’! Very difficult to do, unless you are in the heavy throws of MAC.

Katemn, my Pulmonologist too encourages exercise to build up lung strength. But I’d like to see these docs get in the practice of telling patients about several exercises they can do — not the aerobics type that aren’t so recommended when you get ‘older’, but exercises that are sustaining for a lifetime — Pilates, Yoga, etc. In past years, I’d cough and cough when I did Pilates and I’ve just told my instructor it’s good that I’m coughing, means I’m opening up my lungs. This winter I have hardly coughed . . . wonder if it’s because I am engaged in Pilates or Yoga or Barre almost each day. I recently retired from 50 hr work weeks.
Boy, Katemn, Kettle Bells can really put your body out of whack, if you aren’t used to this type of exercise.

Best wishes to everyone on this blog . . . keep us posted on how you are doing. I think I’m in my 9th year of being diagnosed with MAC (after 2 yrs of misdiagnosis), and feeling fabulous!

REPLY
@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

Jump to this post

Thank you Paula for your response!
I had just purchased a Palates video and now I am even more determined to be disciplined about using it! Plus I do have the Aerobika and an Elyptical exerciser. Also I am convinced to go beyond my county knowing the importance of finding a better, more informed Doctor ( esp. after hearing what Melissa has been through). I guess I was just concerned about what to do in an emergency/ urgent situation But shy of relocating, I suppose you have to hope for the best and get to the specialist as soon as possible. I am actually thinking That it wouldn’t be a bad idea to have my MAC Dr.’s name & contact info (also NJH contact info) on a medical bracelet or anklet. ??
It is VERY good news to hear you are feeling better. I’ve been blindsided with this diagnosis and even more so with the prognosis of MAC Just trying to wrap my head around it and do any and everything to beat it. Sure appreciate your encouraging words
To All: Prayers for strength and courage and blessings to all who are in this struggle

REPLY
@Paula_MAC2007

Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you feel better. I find it strange that the VA docs you’ve seen have you trying to cough up sputum ‘on demand’! Very difficult to do, unless you are in the heavy throws of MAC.

Katemn, my Pulmonologist too encourages exercise to build up lung strength. But I’d like to see these docs get in the practice of telling patients about several exercises they can do — not the aerobics type that aren’t so recommended when you get ‘older’, but exercises that are sustaining for a lifetime — Pilates, Yoga, etc. In past years, I’d cough and cough when I did Pilates and I’ve just told my instructor it’s good that I’m coughing, means I’m opening up my lungs. This winter I have hardly coughed . . . wonder if it’s because I am engaged in Pilates or Yoga or Barre almost each day. I recently retired from 50 hr work weeks.
Boy, Katemn, Kettle Bells can really put your body out of whack, if you aren’t used to this type of exercise.

Best wishes to everyone on this blog . . . keep us posted on how you are doing. I think I’m in my 9th year of being diagnosed with MAC (after 2 yrs of misdiagnosis), and feeling fabulous!

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Hi Paula,
You are so right .. that darn Kettle Ball really irritated a nerve in my back. But the result is that I now better understand why I had such bad back pain with all my coughing. I really thought it was damage to my SI joint.

Last week I went to an Ortho Doctor .. he took an Xray .. put me on a “Medrol” steroid 6 day pack to calm down the inflammation .. it GREATLY relieved the pain. Then today the 1st day of physical therapy .. she was really great! Gave me 2 pages of lower back exercises to do daily. Turns out it is NOT SI .. it is the usual L4-L5 lower back issues. Basically part of the aging process I think!

BUT by strengthening the muscles around the spine it will better support the spine and I fully expect the pain to improve. By wearing my SI belt my pain level was VERY bearable prior to my experience with the Kettle Ball. She also encouraged me to get back to my exercise routine of Nordic Track and yoga in addition to these lower back exercises

Paula, I agree with you .. I am sure I have been coughing more because I have not been exercising due to the back pain .. I am back to joining you with the exercise!. Let’s forge forward toward healthy living!

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Lainey,
Good for you in the exercise area .. keep it up!

In terms of a medical emergency. I found the best info on MAI/MAC and
put it into a WORD Document. Then included it in the below memory stick to educate any health professional who was unaware of just what MAI/MAC was.

I was given the below idea years ago by a nurse. Because we travel a lot, I
did the below for me (and my husband).

PREPARATION:
1.Gather all medical information and type into a Word Document. Separate the medical information by HEADINGS:

a. BASIS ID INFO INCLUDING INSURANCE INFO/EMERGENCY CONTACT
INFO/PRIMARY DOCTOR
b. OUR INFO including phone numbers, home address
c. BLOOD TYPE
d. MEDICATIONS CURRENTLY TAKING: name/dosage/when taken/what taken for
e. OVER THE COUNTER TAKEN: (name and dosage)
f. OK: WORKS FOR ME: (listing various drugs that work for me (name and dosage) ie Antibiotic/Anti inflammatory/Pain Medication/Pulmonary
g. ALLERGIES/SIDE AFFECTS TO DRUGS (name and dosage)
h. HEALTH ISSUES: name of issue and date diagnosed
i. SURGERIES: name of surgery and date of surgery
j. VACCINATIONS/IMMUNIZATIONS : type and date done
k. LAST DERMATOLOGY FULL BODY SKIN EXAM:
l. LAST COLONOCOPY:
m. LAST EYE EXAM: 03/15
n. LAST DEXA:
o. DOCTORS: name/(fax # indicated) (various doctors I see)

2. THEN THE MOST IMPORTANT THING THE NURSE TOLD ME! You transfer the information from your Word Document to a memory stick and CARRY it in your purse!! I thought that was just brilliant!!

I have since that time updated that Word Document with each prescription change or medical change, printed it out and taken it to EVERY doctor appointment. Every hospital situation.

They are blown away! I tell them they can keep the print out and they just LOVE having all that up to date data! The truth is once you get it on your computer it is a piece of cake to just update it as you go.

I hope the above makes sense to you. If not, please feel free to question me! I know it has really helped me immensely both in traveling and in running my husband to the Emergency Room that is the first thing I grab — my Word Document and my Memory Stick that has even our Living Wills on it!

Liked by Melissa23, tdrell

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@Paula_MAC2007

Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you feel better. I find it strange that the VA docs you’ve seen have you trying to cough up sputum ‘on demand’! Very difficult to do, unless you are in the heavy throws of MAC.

Katemn, my Pulmonologist too encourages exercise to build up lung strength. But I’d like to see these docs get in the practice of telling patients about several exercises they can do — not the aerobics type that aren’t so recommended when you get ‘older’, but exercises that are sustaining for a lifetime — Pilates, Yoga, etc. In past years, I’d cough and cough when I did Pilates and I’ve just told my instructor it’s good that I’m coughing, means I’m opening up my lungs. This winter I have hardly coughed . . . wonder if it’s because I am engaged in Pilates or Yoga or Barre almost each day. I recently retired from 50 hr work weeks.
Boy, Katemn, Kettle Bells can really put your body out of whack, if you aren’t used to this type of exercise.

Best wishes to everyone on this blog . . . keep us posted on how you are doing. I think I’m in my 9th year of being diagnosed with MAC (after 2 yrs of misdiagnosis), and feeling fabulous!

Jump to this post

Hi Paula,
Yes I agree. What makes it worse is that they would not accept my sputum that I cough up on my own first thing in the morning. When I went in yesterday to the Army hospital to produce their third requested sample, I brought a sputum sample with me coughed up just an hour before (in a sterile cup given to me from UNC) that they would not accept. So I endured another twenty minutes of deep breathing of the saline solution and coughing in the watchful eyes of the technician… I was terrified to see that I began coughing up bright red patches of bloody sputum….

My lungs were burning and my ribs have been hurting so bad from the forced coughing at WAMC (in addition to my regular coughing) plus the two breathing tests. I told the Army technician that I do not trust them for making me go through the forced/induced sputum tests three days in a row and not accepting my first morning sputum cultures for sampling (she just raised an eyebrow).

One more thing, in review of my UNC visit notes, the doctored changed by diagnosis from MAC to Mycobacterium avium-intracellulare infection… A different species of M. avium… I will gather more clarity on this as time passes.

May the Force be with YOU all.

Melissa

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