(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

@debbiet

I am looking for patients that have MAC to learn about their meds and sidemeffects

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Hi @debbiet,
Have you seen the great group of people sharing about MAC on this Connect discussion thread? https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

Please click on the link and join in. All welcome.

Colleen
Connect Community Director

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.

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Hello Nick and Paula, Please tell me the name of your Pulmonologist from Central Florida I am in need of one I am presently being tested at National Jewish Health but I cant stay here indefinitely. My home is in Central Florida. I sure hope the best for all of you, as I truly understand the difficulties involved with this disease. I am quite weary and hold on to my faith to get me through all the unknowns and trials. Thank you for sharing.

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

I am also in Central Fla and I go to University of Fla at shands in
Gainesville. I had a Dr Fennelly who was excellent and specializes in MAC,
he was the director of Nontuberculous Mycobacterial Disease program but he
has moved on so now seeing another dr there who also seems quite good. has
replaced him. Dr. Moguillansky . Their phone if you are interested is 352
265 0139

REPLY

Thank you so much I will call today!

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

In the Orange City/Lake Mary area (Volusia County/Seminole County), Dr.
Karuna Ahuja.
http://www.FLHeartLung.com

REPLY
@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.

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Hi Colleen. I am about to be undergo another round of sputum cultures in a ‘unorthodox military setting’ to see if I am still producing positive AFB compared to my last round of cultures which were performed in May 2015 (they were all positive). My most recent CT Scans (July 2015 without contrast) evidences ‘tree in bud opacity/branching nodular densities in the superior segment right lower lobe’ with no “new nodules” compared to the 2014 CT Scan which did NOT have tree-in-bud opacities, but did “redemonstrate biapical chronic lung changes” from 2011 CT Scan, “reticulonodular, interstitial, pleruparenchymal opacities in both lung apicies”.

I am dealing with people down here who have no clue what MAC is and are too proud to admit that they have no idea how to identify or treat it. They only treated me with two antibiotics almost five months before taking me off of them. This was all after a TB misdiagnosis following a 21mm PPD in 2011, and treatment with Isoniazid for nearly 6 months, further building the resistance of the Mycobacterium avium to the proper treatment.

I have written my Congressman, Thomas Massie in Kentucky, for a review of my condition and to “Trust but Verify” the claims and treatment (the lack thereof) by the Army MEDCOM providers. To date, I have been able to secure a second opinion with an insurance authorization to have: ONE appointment with a Pulmonary Disease doctor and ONE appointment with an Infectious Disease doctor both at UNC in Chapel Hill.

Based on your experience, is there really anything that can be accomplished in ONE appointment for a MAC infection? What do I need to ask these doctors to do that the Army medical team is not doing?

The Army has provided me with Reports but NOT imaging of my most recent CT Scans, so that I can take them to the appointments. I will also take all blood work and sputum results with me to the appointments.

Thank you for any guidance you may be able to provide.

Very respectfully,
Melissa

REPLY
@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.

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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.

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

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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

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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.

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.

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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.

REPLY
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