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

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

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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@heathert, Heather and All, the TOTAL credit goes NOT to me .. but to Mayo Clinic who hired Colleen Young and began Mayo Clinic Connect. We are just this wonderful little corner of this world .. if you REALLY want to be impressed .. take a look : https://connect.mayoclinic.org/groups/ . WOW! Impressive!

Everywhere I go I talk about this wonderful opportunity for people in distress to share what WE have/share on our MAC Forum! Truthfully I don’t pretend that ALL the Forums are QUITE as wonderful as ours .. BUT of course I am speaking as a Mama Bear proud of her Cubs! BUT there is a place on Mayo Clinic Connect for nearly every health issue AND Caregivers to find shelter in the storm .. to find support/hints/help for their particular issue. It is just that our particular MAC Forum is evidently the oldest and most active (and of course in my opinion .. the smartest .. prettiest .. nicest and most talented!) of all the Forums!

But you would be doing a service if you do take a look/familiarize yourself with https://connect.mayoclinic.org/groups/ .. and then shout to the rooftops to anyone you talk to .. tell them just to google: Mayo Clinic Connect .. they can then find a group that could be a lifesaver for them/a friend/a family member .. just as it has been for us! Do them a good turn! Truthfully I kind of embarrassed my husband a while back in a restaurant! As I passed by a table on the way to the restroom .. I saw a woman in her late 40’s with an oxygen tank. To make a long story SHORT .. I connected her to Mayo Clinic Connect .. she was VERY grateful. WHY? Because in our lives we have people who love us .. BUT they do NOT walk our walk .. ONLY people on our Forum WALK OUR WALK. It helps SO much to reach out to people who really understand.

So even if it is NOT an oxygen tank .. I just did the same thing with a heart patient .. health issues are basically all the same .. we all have the same pain. So do reach out to others .. be it what ever part of the body. Hope this helps us help others! Hugs to all! Katherine

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@boomerexpert

@ilgrp4e there is an inhaled medication given when others aren’t working properly: Amikacin – ask about it when next w/doc

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My mom’s Dr. Is seriously good for nothing. I called and he always has his nurse call and say oh go to the ER. I finally had to tell the just if the Dr was an idiot. Or if he even knows who my mom is and reviews her chart before calling me. It’s the rifampin that makes her sick and it needs to be replaced. So now she said shell talk to the Dr and see what she can do. Meanwhile I called Loyola here in Chicago and Dr. James cook specializes in Mac and can see her but not until July. So would you or anyone know Incase her current Dr. Doesn’t want to replace the rifampin if she can just keep taking the other 2 antibiotics and no rifampin or other until she gets an appt with Dr James cook in July. The Mayo Dr. You mentioned you saw recommended him when I emailed him before.

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Wed, Mar 15 at 2:14pm CDT
Hi there, im new to this groip. Last year i had a 3 month review for an upper left lobe cavitary lesion. Bronchospy couldn’t reveal any information, the lesion isi5n difficult spot to get enough sample. Three months ago thr next CT scan revealed the size was the same but the wall thickness is a bit smaller than before. My next CT is soon and i want to be prepared with questions but dont know where to begin. I have RA and psoriatic arthritis, and also suffered a fall before all this started. Please let me know if you have any suggestions….i see the cardio/thoracic surgeon in a couple weeks and he said if not smaller they want to get me in surgery….thank you

, Thu, Mar 16 at 1:03pm CDT
Thank you everone so much. I see my rheumatologist tomorrow and ct scan scheduled on Tuesday. I had been participating in the MAC support group several months ago but a dying phone kept me off for a while. The info everyone has given me really helps.
I am a little concerned, still need a sputum test and did have a broncoscopy last summer but the surgeeon i was later refered to said he couldnt rule out cancer, but we will review it and make decision in April. What i dont understand is this all started at ladt year same time i developed a uti which caused sepsis as it went into bladder infection (more than 4 baterium found in labwork). It kind of sounds like i should have been given long term meds from what i see in the responses. Ive had severe weakness before and after the chest xray. The pulmonologist i saw who did my broncoscopy didnt know what to do so at least he moved me to this surgeon for another opinion. Being immunocompromised already has helped to confuse things, and im certain an open biopsy is not something ill decide lightly. Im off to review the links you offered Kate. Julie8888

Thu, Mar 23 at 2:22pm CDT
Thank you again Katherine. I will keep everyone updated about my April 4th visit with CARDIO/THORacic surgeon on April 4. It was difficult getting the ct scan, i wasnt feeling well from a hip/bursitis injection last Friday, where i had an allergy to it. I experienced extreme itching, cortisone flare, swelling along ankle and on top of right hand. Seems like ive gone down this journey with lung and increased inflammation, food allergies since i had several injections over a year ago. Its hard when so many things make it complicAted for doctors to diagnose and treat. Im picking up a short azithromyacin zpac today for new sinus infection. Im venting but know everyone understands.
Ill get the results tomorrow of ct scan and will definitely come here with the news. Is this thread in the mac group, i mzy have put it in wrong spot? Sincerely, jewel8888 julie

Posted by @jewel8888, 2 hours ago
I appreciate your checking on me!
I didn’t know if our above posts could be moved to the MAC group or if i needed to start new thread
I go to Dr tomorrow, with report in hand. Its looking good with the lesion not increasing. It does say there is ground glass increasing bilaterally, likely from atelectasis and hypoventilation. Also that this is still of unknown origin….., neoplasric, infectious, inflammatory. Its hard trying to remember what to ask but i think with all I’ve learned from you and the group i will be ok. This surgeon is chief of the medical Univ. Of South Carolina.
Thank you. Again, i will make sure to share afterwards.
Julie
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@jewel8888 Julie, I am answering you on the Main MAC Forum page .. that means now if you just hit the Reply button from now on it will take you back to the Main MAC Forum page where you wanted to be in the first place. I can’t move your previous posts .. but have tried to copy/paste so Members can see your history. I am sorry I did not take care of this sooner .. but I was out with a family situation .. but now all your posts will be here!

Julie, let us know how your appointment goes .. AND go back to https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=33 and print out that “Questions to Ask Your Doctor” form that I gave you there .. change it as you need to .. give yourself spaces between the questions etc. That will give you some ideas of questions to ask! Good luck and keep us posted! Hugs! Katherine

Liked by jewel8888, shiell

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@ilgrp4e

Quick question. So been back and forth with my mom with her doctors in the meds for Mac. So now they’re doing the two week intervals but she just started the Rifampin on Friday and this is the pill that is making her really really sick she lost 3 pounds in 3 days getting fever so I call the nurse and she suggested to stop that pill. So I got to wait for the doctor to call back but I’m guessing that maybe they’ll replace that certain pill with maybe it different antibiotic. I’m just a little concerned because I know that these three antibiotics are the ones that work with treating mat so if she gets one switched his it harder and even possible for her to be treated still just wondering if anybody here has had that specific pill replace and his okay on it?
Thx, Carmen

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@ilgrp4e .. Carmen, Rifampin frequently creates issues .. exactly WHICH antibiotics is she taking?? Below is what I show as recommended as “Standard”. Do you see and ‘ALTERNATE”?? Hope some of this helps! Hugs! Katherine

From my File Cabinet:
ANTIBIOTIC ..STANDARD TREATMENT Standard treatment of MAC recommended by the American Thoracic Society (ATS) is a combination of 3 or 4 drugs approved by the Food and Drug Administration (FDA). The drugs include:
Clarithromycin (Biaxin) or Azithromycin (Zithromax)
Rifampin (Rifadin) or Rifabutin (Mycobutin) + Ethambutol (Myambutol)
Streptomycin (Strep) or Amikacin (Amikin)
The first three drugs are pills/capsules and may be given daily or three times weekly (Monday-Wednesday-Friday)

. While taking these medicines, routine laboratory tests to check kidneys and liver along with a complete blood count (CBC) should be performed, at least routinely for the first six months. Patients who fail therapy after taking the 3 standard medicines (clarithromycin/azithromycin, rifampin/rifabutin, and ethambutol) are usually required to take additional medicines (such as injectables or “shots”) which may be effective. For extensive or severe disease, or disease that has failed therapy, the injectables streptomycin or amikacin are often added for the first 2 to 4 months of therapy.

ALSO DID YOU TRY THIS MED SCHEDULING?
SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut – the antibiotics wreak havoc with the gut. This can help with nausea – I take my probiotic with breakfast or lunch – do not take it late in the day. I use Ultra Jarro-Dophilus – 50 billion per capsule – will find in the frig at any health food store – I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts – they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela

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@boomerexpert

@ilgrp4e there is an inhaled medication given when others aren’t working properly: Amikacin – ask about it when next w/doc

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So sorry to hear all your mom is going through. My ID dr told me I had to take all 3 antibotics/ day or don’t take any (like if I had a procedure). Yet in October (my MAC cultures were clear) when we discovered the ethambutol was giving me a rash, they had me stop that drug and keep going with rifampin and azythromycin (sp?). They told me that the MAC was so slow growing they were okay waiting for a month or two. I’m guessing this was because my cultures were negative. They sent me to an allergist to see if I could be desentatize to ethambutol, which I was able to be and went back on it jan 30th, along with the oyher 2 drugs I never stopped. When I saw an ID dr at mayo he said there were other drugs to be tried if I couldn’t be desentatized, but he didn’t indicate if it was drug for drug or the whole treatment of drugs together. Hope someone else has a better answer for you. One thing I would say is to call the dr back that you have an appt with in july and see if you can be put on a cancel list. Never hurts to ask! Best wishes.

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@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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It is technically not a bacterium, that is the loophole they are using, it is a mycobacterium. Just like they can loophole mycoplasma. Seems like we might fit
into “orphan diseases” category.
 

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@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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Or if we can show that he has a genetic marker. Does anyone else have someone in their past who has died of MAC or of a respiratory disease, that may have not
been diagnosed as MAC, or was diagnosed with tuberculosis, which could have been incorrect diagnosis of MAC back then, we are talking a very long time between you and a child of yours or a sibling getting diagnosed with this, as long as thirty years, more
if it can skip a generation ?
 
Or that we can show that it is not only a species jumper, but also carried in water and soil, which is true,making it a potential biohazard, then it would go
in with the terrorist agent, anthrax, and that is a government funded project.
 

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@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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I would agree with your positive attitude. But…. I absolutely will not give up figuring out the how we got it, what is correlated, etc….because there should
be better testing and better treatments. If you watched your Mother and your Aunt go through this and find that not that much has changed in 30 years then peace is great but I will find it when I find my answers. If this has a genetic component then I want
to know, and I think everyone with MAC should know that., is your daughter or son or niece or nephew going where you are? Is this environmentally related, did I just share the same space or the same habits. Finding correlating issues is a central key to finding
the answers, and within those answers lies a cure, and better testing. By the way, it is a proven medical fact that a positive attitude is directly correlated with a far superior immune system, lots of papers on that on pubmed.  Most of the research out of
Berkley and UCLA.
 

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@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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Hi, I had rheumatic fever when I was 8. And I have had a horrible time with allergies all of my life. Wonder if anyone else had rheumatic fever? Thanks for
your reply. I am very serious about getting to the bottom of this, and I am very serious about putting one of the researchers to work on it as soon as I catch him at work.
 

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@boomerexpert

@ilgrp4e there is an inhaled medication given when others aren’t working properly: Amikacin – ask about it when next w/doc

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Ask the new doctor, just call or email his office, he may want all of her medical records sent to him so be ready, and FIRE the current one immediately!!! You
hire them, they work for you, if they do a lousy job, or no job at all then they should go swiftly. You  get one body and it belongs to you. I keep asking “where have all the doctors gone”
 

Liked by ilgrp4e

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@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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Thanks that clears things up for me, and they finally gave me something for my splitting headache. My dog appreciates that, he has had a bath and a nice walk.
Which he really deserved for having to take extra special care of me for last month.
 
Looks like MAC is becoming more widespread and mutating quickly as well. Time for action, and people in the right places to pay attention.
 

Liked by ginak

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@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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From Kay SMy parents both had Tuberculosis and were in a sanatorium. That’s where they met. That was 8 years before I was born. I don’t see a genetic connection unless it is a predisposition to the lung disease. Or predisposition to Tb and MAC. That could be genetic right?I suppose they could have had MAC. There were no TB medications in the 30s and surgery was the cure. My mom had a lung removed and my dad part of one. My mom was in the sanatorium for a couple years. If one of them did have MAC or I have a predisposition to it from them that would be interesting. I’ve told this to all my docs which they seem to find it interesting but nothing more than that. They tested me for alpha 1 antitripsin and I was negative for that genetic marker. Thoughts? Anyone else have a parent with TB or MAC? I know one persons mom had MAC.THANKSKay

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@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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@kay strand, Kay, as I have mentioned before .. I had the 23andme genetic test which only test about 1% of our genetic code. It came back with a genetic code showing a genetic deficiency that can affect the lungs. I showed the report to Dr. Aksamit thinking he would totally discount it as the “spit test” .. but he was actually interested in it .. took the copy and made it a part of my medical report .. noting it:
PER MAYO REPORT: Alpha-1-antirypin heterozygosity, Z allele

From my File Cabinet: Alpha-1 Antitrypsin Deficiency The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. Smoking, which can inhibit what little AAT protein an affected person does have, increases the risk of lung disease.

Who knows quite how it all fits in .. but! Hugs! Katherine

Liked by tdrell

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@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can’t thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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Wow this is interesting. I have already done the Ancestry ‘spit test’ but I’m more interested in familial health problems. Both my parents were smokers. My mom had Lupus and my dad had hemochromatosis.

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@katemn

Need lots of help
Posted by @shiell in MAC & Bronchiectasis, 1 hour ago
I introduced myself and problem a few weeks ago. I don’t think I had reached the occurrence yet that I am writing about today. I had a six month visit with my pulmonologist and he ordered a sputum test because I complained of coughing more. Sadly the result was pseudomonas with only tobramycin and furzas recommended. Half way through the tobramycin I thought it was going to kill me. Doctor went immediately to 10 day program with furzas. I have finished that and they are leaving the picu line in case of needed repeat. Help

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Dear @shiell .. (and @windwalker, @tay4rake, @luvocean, and others dealing with Pseudomonas) I hope you don’t mind but I am moving your post to an area where there are others dealing with Pseudomonas .. I am hoping you will receive more help there. I remember you are the caretaker for your husband so this must be a tough time for you.

I can only speak for myself. I was diagnosed with Pseudomonas 3/7/17. My Pulmonologist, Dr. Timothy Aksamit at Mayo Clinic, Rochester MN prescribed Cipro 500mg 2x per day for 28 days with the understanding that if that did not stabilize the Pseudomonas .. then we would do the Toby 28 days on .. 28 days off for a 3 time cycle. You might ask your Pulmonologist IF this might be an option for you? Sending you Hug and positive energy in this tough time! Katherine

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This is Connie. I will mention this to my ID doctor tomorrow as I cannot take Toby. Thank you!

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