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Posted by @katemn in Lung Health, 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!


Posted by @kathyg, Dec 22, 2011

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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Posted by @katemn, Dec 22, 2011

Hi Kathy,
There is so much to chat about .. I would be willing to call you later this afternoon or evening if that is convenient for you? Send me your phone number .. if today is not convenient .. when.

By the way .. at the theatre or wherever .. I was proactive .. I said right off "I just want to tell you that I have a lung issue so I cough .. but it is NOT contagious .. I don't have a cold or flu!" The usual response was a chuckle .. but appreciation and a note of comfort and understanding,

Keep your chin up!


Posted by @kathyg, Dec 22, 2011

Yes, I also had a standard disclaimer whenever I was going to be in public. We always knew it wasn't contagious because my husband never had it after the intial cold in October of 2010.

I left a message for Dr. Mullen to call me again today on my home phone. He usually gets to his calls at about 5:30 or 6pm. I am so glad I found you this morning..... Kathy

Edited: 02/07/2016 @ 11:32am


Posted by @kathyg, Jan 2, 2012

Hi, Katherine

I wanted to thank you again for referring me to your doctor. I have an appointment with him in February. Hopefully this will be the beginning of my journey to better health. I hope you are enjoying your time in FL, I'm anxious to join you in warmer climes soon.... Take care, Kathy


Posted by @katemn, Jan 2, 2012

Hi Kathy!
So glad you got in! I always make sure to set my next appointment while I am there for a 3 month follow up if needed as he is hard to get into.

I hope you like him as much as I do .. as far as I am concerned he just "walks on water"! At my age I've dealt with a lot of various doctors over the years .. without a doubt he has been the most caring, watchful and on the ball I've ever had. Of course as in all medicine you MUST be your own advocate .. EDUCATE yourself .. keep in mind that NO ONE knows your body as well as you do .. question until you are satisfied that you understand etc.

Hope your appointment goes well! If you are interested .. from various sources I put together a form to take to appointments to remind me of what questions to ask. If you are interested I could email it to you .. you could then adapt it to your own needs. Email me if you are interested .. I think you have my personal email.
Best regards,
Katherine (Kate is just my anonymous name!)


Posted by @jilltpayne, Jul 17, 2012

Hi. I had difficulty getting to this discussion as MAC was not on the list of things. I am on a three drug regimen 3 times a week to start. The day after i take the drugs, I have tremendous fatigue and do not feel like doing anything - at least until later in the day. I don't see anything on line that would help me know what to do about this except suffer! They all tell you about side effects, but nothing about what to do to counteract them. I take probiotics twice a day, but also do not have much appetite.
I know it could be worse, but I need to get at least a little more energy.


Posted by @montyjean, Oct 10, 2012

Jill, Did you start the antibotics in July 2012? I just got my diagnosis last Thursday. What info is available on the internet is minimual. My sister found this site and I really hope to hear from others who have MAC.


Posted by @debbiec, Oct 13, 2012

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?


Posted by @dixer, Sun, Jan 24 at 9:15am CDT

The best thing that happened to me was switching to a medical university Shands in Gainesville who still treat me but referred me to National Jewish in Colorado. I live in Fl. My first visit was for 10 days where they run tests on you from early morning until 4 or 5 at night. At the end of all testing it was determined I would be a candidate for a left lingula lobectomy and later a r middle lobe. Both of these areas now had M abscessus and were damaged from the bronchiectasis. Neither was working they were actually dead tissue. One they were removed it removed most or all hopefully of the disease. The surgeon I had was Dr John Mitchel of the University of Colorado. He is a well know surgeon who specializes in VATS surgery which is less invasive.
National Jewish is the top know hospital for well as oter lung issues. I flew there by myself to save money on airfare and hotel costs and the hotel had a van that took you back and forth for free. I know this seems expensive and alot to do but it is your health we are talking about.


Posted by @boomerexpert, Fri, May 13 at 2:11pm CDT

Yes...I have RA, and pulmonologist now suspects I have MAC...getting bronch on Tuesday although unsure if such an invasive dx tool necessary without doing a sputum first...checking on that... I live in Tampa and can find no good docs here...really have to travel to Gainesville for top notch doc for this infection?? Or CO...or MN...?! Does everyone here know that no meaningful research has been done on this infectious disease, and the same approach to treatment has been used for at least 20 years? Sheesh...And that's in spite of the significant increase in cases. I, too, have extensive reservations about taking so many heavy antibiotics...with such ridiculous side effects. I live alone so must be able to function. Anyone here in FL want to share a trip to Gainesville with me? 🙂


Posted by @tdrell, Mon, Aug 22 at 9:00pm CDT

Hi @dixer...may I ask who was your initial Dr at Nayl Jewish Hospital in Denver...I began the process to becoming a patient today...and would love to know more from someone who has been there. Thanks and hope you are doing ok Terri


Posted by @dixer, Tue, Aug 23 at 9:29am CDT

Dr Wendi Drummond. Very knowledgable and very kind.


Posted by @coylemel333, Sat, Aug 27 at 6:38pm CDT

We're do you live in Florida I live in Naples Florida


Posted by @boomerexpert, Sun, Aug 28 at 12:16pm CDT

Yep..I'm eavesdropping sort of.received this as we all do with post on
discussion board.wanted to respond as I live in the Tampa Bay area.



Posted by @dixer, Sun, Aug 28 at 12:32pm CDT

I live in ocala FL


Posted by @cowboy1997, Sun, Aug 28 at 4:30pm CDT

I live in the Brandon/Litha area. Do you have this disease


Posted by @cathyt, Sun, Sep 4 at 9:50pm CDT

I too have been diagnosed with Mac. I've been on meds for six months. I had a CT scan few weeks ago. Dr really didn't give me a straight answer if the same or worse. He was more concerned with my PFT test stating my chest was a lot tighter which I haven't noticed. How soon can you tell if meds are working? Do you see an infectious dr in addition to a pulmonary dr?
I'm wanting to find someone who specializes in Mac. I live in Lake Mary Fl


Posted by @apportee, Mon, Sep 5 at 4:11pm CDT

Hi, I have a question please. Do you cough a lot if you have MAC. If you do is the sputum clear and thick?


Posted by @colleenyoung, Mon, Sep 5 at 10:29am CDT

Cathy, there are quite a few Floridians on this forum who can make a recommendation. I'm tagging @dixer @boomerexpert @coylemel333. You can also call Mayo Clinic Jacksonville for recommendations


Posted by @boomerexpert, Mon, Sep 5 at 1:39pm CDT

If asking me, yes.


Posted by @tdrell, Fri, Sep 23 at 11:50am CDT asked if you cough alot with MAC....for 2 years...before i was diagnosed from the washings from a bronchoscope which grew the cursed MAC.....every evening from 5 pm for 2 to 5 hours I would cough ,wheeze and bring up lots of thick..white or clear.mucus....which tested in a routine culture...negative. I heard Dr Daley an NTM specialist at National Jewish...comment that MAC mucus is Clear to white.terrid


Posted by @katemn, Fri, Sep 23 at 11:01pm CDT

Apportee (do you have a first name?) .. I might add to Terri D. that in addition to the clear/white mucus .. I also have light to dark yellow spots in the middle of the mucus at various times. Dr. Aksamit doesn't seem to be too alarmed .. just asks me the size and darkness of the yellow spots. I only add this so people won't be too alarmed if they see yellow in their sputum. It SHOULD be reported to your doctor .. BUT do not get too worried. it has happened to me all along for years .. and I am still hopping along! Hugs to all! Katherine


Posted by @debymacc, Mar 10, 2013

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.


Posted by @heathert, Mon, Mar 7 at 3:32pm CDT

Hi I was just wondering if you are still Mac free, and what antibiotics & amounts worked for you? Do you now take any precautions to avoid getting reinfected like boiling drinking water?


Posted by @Paula_MAC2007, Mar 24, 2013

I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that got progressively worse). For 4 yrs, 3 months (Feb 2008 - April 2012), I was on the 3 standard drugs for MAC . I had some side effects from the drugs but gradually they went away or I learned how to deal with them. If my routine got out of whack (like on vacation) I suffered.

Over the years, I grew to feel like my old self - although as a high energy person, I was somewhat sluggish from the medication. Last April, I negotiated with my pulmonologist to go off the drugs. What a relief! Was like a weight had been lifted . . . I felt much lighter and less sluggish. While my MAC was not gone, my lesions had shrunk over the years of antibiotics. I considered the MAC as hibernating or resting!

Eight months later (December 2012) I began experiencing the cough (which at times results in spasms) and tiredness. Since Feb, I have been on two different antibiotics from my Internist - to rule out a severe sinus infection. No dice! Yesterday (March 2013) I saw my pulmonologist who, before assuming it is MAC and resuming the meds, wants to do a lung lavage and CT scan. Will do this within the next two weeks.

Incidentally, my Internist did a lot of blood workup recently and my Vitamin D is very low. Am now taking 50,000 IU for 12 weeks and then repeat the tests. My pulmonologist yesterday mentioned there is some connection between Vitamin D and lung issues but it's not real concrete yet.

So my MAC appears to no longer be 'resting'.

I will follow this blog with great interest. I live in Wisconsin, in the part of the upper Midwest where MAC is found. Yet MAC is not found in some other Great Lake states. Sure is a mystery.


Edited: 09/07/2016 @ 6:06pm


Posted by @jh, Jun 19, 2013

I was dx'd with MAC in 1998. During the diagnosis process I was subsequently infected with another more serious infection during a bronch.
I was on 3 to 6 antibiotics for 8 years. After 2 years I no longer tested positive (sputum) for the MAC.

After surgery to remove the lobe with the other, more serious infection, I have neither.

Good nutrition, daily EXCERCISE via workouts on my tread mill to keep lungs clear, have been key. Basically, I never let it interfere with my life. Yes, sometimes I was tired particularly after my morning 'cocktail' of meds, but my husband was good at gently coaxing me on, and I would eventually get over the 'hump' and enjoy an active day.

Also key, get an adjustable bed. They are expensive, but necessary so that you don't sleep flat, I waited years, and found I should have followed my Dr.s instructions immediately. Also, eat light at night.

but really, the huffing, puffing excersize 4 days a week, keeps the lungs clear and seems to have been (and still is) my biggest help other than the meds.

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Posted by @dixer, Mon, Sep 5 at 5:53pm CDT

you caught something during the bronch? I wonder if I got either the lung fungus or the nocardia from my bronch?


Posted by @ehliny, Jul 2, 2013

Is this blog still active? I am suffering from the chronic MAC cough and desperate for some guidance. Many thanks!


Posted by @tdrell, Mon, Aug 22 at 9:54pm CDT

I use the albuteral inhaler I use for my asthma when I have my evening coughing jag and it settles the cough somewhat.
Also did I read got another Mac infection from the bronchoscopy?terri

Edited: 08/22/2016 @ 9:56pm


Posted by @katemn, Mon, Aug 22 at 11:05pm CDT

Terri, you are lucky you can use albuterol .. just shows how different all our bodies are! Albuterol triggered my migraines just horribly! If you are addressing this to me .. no I did not get another MAI infection .. I have been free since May 2014. It helps if you are only asking one person .. that you address it to that person .. other wise we can all hop on. Hope that clears it for you! Hugs to you! Katherine

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Posted by @blc, Aug 21, 2013

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can't imagine taking these meds for the next year or more!! I'm sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I'm a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B


Posted by @maryke, May 27, 2015

I was diagnosed with Mac the 7/52015. I am on 3 antibiotics (2700mg) per day. I want to know when will I stop feeling so tired? I struggle to eat. Abdominal pain, nausea etc. when I try to clean the house I struggle to breath.


Posted by @jilltpayne, May 27, 2015

I took Calcium D Glucarate once a day. I do not know why it worked but it did. It was not recommended by a doctor but a friend who follows alternative medicine. I was successfully on 3 drugs for 16 months. I did lose about 10 lbs but my appetite improved and I started to feel better after taking the above mentioned calcium D Glucarate which I bought at a local health food store. It is worth a try as I too felt terrible during the first month.


Posted by @maryke, May 27, 2015

Thank you so much for replying, I will defnately give it a go. I don't
think anyone knows what it feels like. I hope I don't have to take the meds
after 12 months anymore.


Posted by @jilltpayne, May 27, 2015

Well, I do know what I felt like and it was pretty awful but I think not as bad as chemo. I would go back to bed at 11 am as I just did not feel like getting off the couch. But I think as time goes by the body adjusts somewhat. Hope the calcium D Glucarate works.


Posted by @Paula_MAC2007, May 27, 2015

Hello BLC and Maryke and Jill,

I was diagnosed with MAC about 7 years ago.- also known as NTM for Nontuberculous Mycobacteria - see info here:
(I'm not Jewish but this is a good site.) See my post above from March 2013.

I am on the regime of the standard 3 antibiotics. Originally I took the drugs EVERYDAY and I barely tolerated them. Was nauseated, occasionally throwing up, lethargic. My pulmonologist told me about several of his patients with MAC and what they do to overcome the side effects of the drugs. He told me to 'find what works for me', to feel better on the drugs. I tried taking them at night, or in the morning, after eating, before eating -- lots of different things. Taking them 1-2 hours before I went to bed, after eating, seemed to help the nausea. After 18 months, I got a new fabulous pulmonologist - an expert on MAC. I gradually felt better. After 3 years, I was going out of the country and negotiated with my doc about going off the drugs, which I did. But after 6 months I was really ill again. Was put back on the drugs but this time taking them only 3 days/week. Been doing it ever since with little side effects. I take them with orange juice when I get up in the morning, and tolerate this just fine now compared to taking them every day! For me, I'll most probably be taking them for the rest of my life. I've had 2 lung biopsies and one lung lavage (wash) over the past 7 years, to see if things have spread.

Besides the drugs,MY DOCTOR RECOMMENDED SEVERAL OTHER THINGS I need to do to help myself feel better. (1) Get some form of exercise to get my lungs expanding -- Yoga or strenuous walking or Pilates, etc. I tried Pilates after being diagnosed seven years ago and have been doing it 2-3 times a week since. This definitely gets my lungs expanding, as I cough when doing Pilates - which is a good thing! I also get out and briskly walk when I can. (2) Plenty of rest -- getting warn down is really easy with this disease. And getting enough rest (whether it's being asleep or merely resting) is important. (3) Get enough Vitamin D, since there is a connection with this and MAC - doctors don't yet know what the connection is.

Also, have your eyes examined early by a very good ophthalmologist. One of the drugs can drastically affect your vision. And have your blood checked regularly, per your doctors orders, since your body is filtering these drugs which can cause liver or kidney issues.

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Posted by @maryke, May 28, 2015

Hi Jill
Thanks for the info. I am going for my CT scan in 2 weeks time, then
the doctor will tell be if I can start doing some exercises. It feels
like someone has broken my chest bone and rib cage. Luckily I don't
cough that much after I started on these antibiotics. I have been
sick for 5 months before I got diagnosed. I also drink my meds with
orange juice. I split my meds in 2. I take 500mg in the morning and
the other 1800mg at night. I struggle to eat and try not to eat after
6 at night and nothing to heavy. Sometimes I feel fine (as fine as I
can feel) and then I am so tired my chest pain, and my ears ache my
neck ache. It feels like I want to roll in a ball and climb in a
hole. I feel blue and bruised. But I think I am starting to cope. I
am a housewife and my in-laws moved in as I was diagnosed, so it still
feels a bit weird for them to do everything. My mother in-law says I
should leave the medication and go the herbal route. I am to scared,
because I don't want to take a chance.


Posted by @jilltpayne, May 28, 2015

Definitely not the herbal route only. It sounds like you were very advanced by the time they figured out what was wrong. I think it is hard to cure MAI and many people probably do not stick with it long enough to be cured. The herbal remedy might make you feel better but it won't cure the condition. Let your mom-in law help and tell her how grateful you are. Hopefully, in a few weeks you will feel better.


Posted by @Paula_MAC2007, May 28, 2015

Maryke, I agree with Jill - not the herbal route only!! Per my pulmonologist, it's much easier to cure TB than MAC - - can cure TB in six months on the drugs. MAC is a stronger form of the bacteria. So take your prescribed meds. I too felt like an elephant on my chest ... but after a year on the drugs, that feeling subsided and now occurs when I'm in hot, humid weather. You really do need to 'baby' yourself along the way with this. It's nothing to fool around with. Your in-laws can be a real help to you. Thank them for their help and care! Try to walk, exercise, build up your strength in your lungs and chest. It does take time so pace yourself. Blessings to you and Jill.

Paula Stroud

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Posted by @marr, Jul 2, 2015

How are you doing now? Are you still taking the meds?


Posted by @debymacc, Jul 2, 2015

I am doing wonderful! No meds after the year of treatment . I do believe I
would have died without them. I could not even shower myself. Had no energy
and would fall into the bed each day after work. The treatment was rough
but it killed the spores. Took me awhile to get over the treatment if
antibiotics .


*Deby *

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Posted by @jilltpayne, Jul 2, 2015

I took three drugs every day for 15 months and in the beginning I felt like you do. But I was able to adjust somehow and got over the initial malaise and depressed appetite. The only thing I took other than my usual vitamins was Calcium D Glucarate. A friend suggested it. I am not sure of the action, but I thought it made the difference and allowed me to turn the tide. You could check it out with your doctor, but I don’t think there is anything harmful. I would be interested in anyone else trying this to see if it helped.

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Posted by @Paula_MAC2007, Jul 3, 2015

Jill, my pulmonologist mentioned several years ago that there is some connection between Vitamin D and MAC (or NTM). My Vitamin D count was originally at 4 and I have been treated by an endocrinologist for 2-3 years and it's now at 35! Great improvement. I was originally on the 3 drug MAC therapy every day for 2-3 years, got much better and went off them for 6 months and got real ill.

Since then, I've been on the 3 drugs EVERY OTHER DAY, 3 DAYS A WEEK. Boy, I can sure tolerate these MUCH better than every day! But I will probably be on these 3 drugs the rest of my life. I have periodic x-ray, CT scans or lung biopsies/washes every 12-18 months to check on the growth or decrease of MAC in my lungs. But today I am doing quite well.

Paula Stroud


Posted by @jilltpayne, Jul 3, 2015

I went on-line to try to find the action of the Calcium D Glucarate, but it mainly said that it might be used in cancer. But I still have no idea how it helped me get through the devastating blow of all the antibiotics. After 15 months on three meds, I have not had a recurrence and not one episode of bronchitis. Perhaps I am just lucky, but I was never as bad as some have described in the posts on this site, so hopefully it is gone.



Posted by @boomerexpert, Sat, Aug 6 at 3:15pm CDT

Does anyone else have difficulty taking the pills due to their size?


Posted by @melissa23, Jun 19, 2015

Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.

I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.

In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.

I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.

Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?

Had anybody out there had their M. avium subspecies identified?

To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.

I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.

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Posted by @debymacc, Jun 20, 2015

I'm reading these comments with much understanding . I really never thought
I would live to see another year. That was 2008. I also had antibiotic
therapy for a year. High doses about 3200 milgrams of antibiotics a day. It
worked . I was very week for that year and had very few side effects.
Coughed up every morning for awhile to rid my lungs of mucus. I had a great
lung physician , without him I wouldn't be here today.


Posted by @melissa23, Jul 3, 2015

Hello DebyMacc, after confronting my doctors with my many questions about my infection and concerns about taking the antibiotics, they took me off of them...Now I am back where I started, maybe worse. Since I was treated for 5 straight months, battling the mycobacterium avium now the MAC will have an opportunity to regain its position and also build an immunity when/if they decide to start antibiotics again. Your doctors saved your life with treatment....I believe that mine are killing me.


Posted by @katemn, Aug 8, 2015

I just saw your post on Dr. Aksamit. FIGHT to get to him! He is the absolute GURU of MAI!! He is on the National Board and is absolutely wonderful!! I go to him and think the man absolutely walks on water! I adore him. When I was SO afraid to go on the antibiotic .. now I am choking up just remembering this .. he took my hand in his .. looked me in the eye and said "We will walk this walk together my Friend." .. and Melissa he DID. For all those long months .. I was on the antibiotics for thirty months .. BUT now I have been off since May 2014. FIGHT TO SEE HIM!! It is your life and health!! Go to the media if necessary .. the VA is not in too good a light right now .. AND the public stands behind the military BIG TIME! Tell the Bigwigs you do NOT want to go to the media .. but that you also don't want to die .. their choice!! Stand up for yourself!

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Posted by @melissa23, Jun 20, 2015

Hi DebyMacc. Have you been tested for MAC since your recovery?


Posted by @kamuning80k, Jul 3, 2015

I was diagnosed mitral regurgitation-severe i would like to avail of your Robotic Assisted surgery. How much it will cost me? And where in US states will i be admitted? Is there a hotel or Inn in that area that are cost savings. Im from Manila, Philippines.


Posted by @jms64, Aug 4, 2015

I have been treated for Mac since 2010. Been on medication since with progressing side effects from the drugs. I was taken off the medication in June. Since that time the cough has returned along with some bloody sputum. Had another CT last week and return to the doctor tomorrow for more evaluation. Do any of you have chest pain or discomfort with this disease? I do not have this problem while on the medication. Now that I am off of it I am experiencing the tightness and pressure in the chest area. It also has gone into COPD. Use an inhaler. Weight loss and the medication has lowered my white count and plat.


Posted by @melissa23, Aug 5, 2015

Hello Julia. The chest pain and discomfort that I experience is constantly isolated in my lower left lung and diaphragm. It feels almost as if my lung is 'rooted' into my ribcage when I breath, therefore I am always taking shallow breaths. In an effort to isolate the MAC in my sinus cavity, a sinus flush was recently performed, and instead of finding Mycobacterium avium, I have a colony of Mycobacterium terrae up there!

Is your CT Scan being performed WITH or without contrast? Please keep us posted with the results. I pray that you are on the mend.

Best wishes,,


Posted by @maryke, Aug 18, 2015

Hi everyone
After being diagnosed with MAC in the beginning of 2015 I have now
been diagnosed with TB and are on the meds for 2 mnths. I have been
in hospital for a week with pleurisy. The pain in my lungs are
killing me. I just feel sick the whole time. I am sick and tired of
being sick and tired!!!!!


Posted by @Paula_MAC2007, Aug 5, 2015

Julia, I periodically have aches or discomfort in my chest - had it years before MAC diagnosis. I also have lost half of my hearing, due to the drugs I'm on - am told it's a side effect of one of the drugs. But the drugs (and exercise and sleep/rest) have kept me well! Inhalers never worked for me - have tried 3-4 different ones. For me, I can't be outside when the dew point is high - causes real tightness and very shallow breaths. My blood work is monitored yearly and it's always been good - sounds like you have a tougher situation with MAC than me. I've adjusted very well although the first 2 years were really rocky. My advice -- find the BEST doctor who knows how to treat MAC, ask him/her tons of questions and follow their advice. My best to you.


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Posted by @digmeme, Wed, Jun 15 at 8:32pm CDT

Finding a doctor who will TALK to you is the answer. I messed around with one for 6 months and yesterday found the right one. I took 5 pages of notes and he spent 55 minutes with me answering questions. I feel like I am on the right road now! Spent lots of $$$$ on drugs that he could not believe I was taking such high dosages of. True......he, too, says all of us need to get the drug companies to research MAI/MAC now that many of us are coming down with it...........wonder how we go about that? I will ask him the next time I see him!


Posted by @turtle3656, Mon, Jun 20 at 8:40am CDT

there is research in this area- go to website for more information- you may qualify for a trial.


Posted by @katemn, Mon, Jun 20 at 4:40pm CDT

Hello Digmeme, good for you that you did NOT give up! Just keep educating yourself .. sharing your knowledge on this Forum and taking good care of yourself! We are all here for you on our shared journey! Hugs to you! Katherine

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