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katemn

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

Posted by @katemn in MAC & Bronchiectasis, 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

 
kathyg

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

katemn

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!
Kate

kathyg

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

donut

Posted by @donut, Fri, Jan 27 at 11:42am CST

Kate: How are you doing? I have MAC as well.

katemn

Posted by @katemn, Fri, Jan 27 at 8:47pm CST

Hi @donut,WELCOME (do you have a first name?) I don't remember your @donut appearing before on our Forum? But anyway .. Hello and Welcome to our Forum! Personally I am doing just great .. tell us how YOU are doing!

We are so glad you found us! You will find our group a support on our shared journey with an exchange our of experiences and information that we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate!

RECOMMENDED READ ARTICLE I would especially recommend an article I just happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
Hope all is well with you! Katherine

kathyg

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

katemn

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!)

jilltpayne

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.

montyjean

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.

debbiec

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?

dixer

Posted by @dixer, Jan 24, 2016

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 Mac.as 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.

boomerexpert

Posted by @boomerexpert, May 13, 2016

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? 🙂

tdrell

Posted by @tdrell, Aug 22, 2016

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

dixer

Posted by @dixer, Aug 23, 2016

Dr Wendi Drummond. Very knowledgable and very kind.

coylemel333

Posted by @coylemel333, Aug 27, 2016

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

boomerexpert

Posted by @boomerexpert, Aug 28, 2016

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.

Terri

dixer

Posted by @dixer, Aug 28, 2016

I live in ocala FL

cowboy1997

Posted by @cowboy1997, Aug 28, 2016

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

cathyt

Posted by @cathyt, Sep 4, 2016

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

apportee

Posted by @apportee, Sep 5, 2016

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

colleenyoung

Posted by @colleenyoung, Sep 5, 2016

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 http://mayocl.in/1mtmR63

boomerexpert

Posted by @boomerexpert, Sep 5, 2016

If asking me, yes.

tdrell

Posted by @tdrell, Sep 23, 2016

Apportee...you 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

katemn

Posted by @katemn, Sep 23, 2016

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

windwalker

Posted by @windwalker, Dec 10, 2016

Hi Cathy! I was diagnosed with MAC in 2005. Pretty sure I caught it in a hottub. Mayo treats it with alternating month antibiotics. 28 days on tobramycin, then, 10 days twice daily cipro 500 mg twice a day. this seems to keep the infection at bay.

marier

Posted by @marier, Dec 26, 2016

hello my name is marie i also live in tampa and looking for a dr i also have mac can you help

colleenyoung

Posted by @colleenyoung, Dec 27, 2016

Welcome @marier. We have a few Floridians on this forum. @cathyt @dixer @boomerexpert @coylemel333 do you have any recommendations for a MAC specialist in the Tampa area?

Marie, you can also call Mayo Clinic Jacksonville for recommendations http://mayocl.in/1mtmR63
When were you diagnosed? Are you receiving treatment?

boomerexpert

Posted by @boomerexpert, Dec 27, 2016

Hey Marie! If you live near downtown and TGH, or near St. Joe's hospital off Dale Mabry, those docs will be better than the rest in the area - they're a bit far for me so can't access them myself. I live in Palm Harbor and have yet to find someone who demonstrates excellence. I will let you know if I find someone recommendable.

cowboy1997

Posted by @cowboy1997, Dec 29, 2016

Colleen how can I move all of my Mayo Clinic posting to a different email address. So I can read them at a time that suits me? Thanks!

colleenyoung

Posted by @colleenyoung, Dec 29, 2016

Hi @cowboy1997
Here's how to change your email address:
1. Go to Account Settings https://connect.mayoclinic.org/account/
2. Enter the new email address.
3. Scroll to the bottom of the page and click "Save Profile".

While you're on Account Settings page, you may wish to tick the check box that says "ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST." That way you'll only get the information you're interested in.

cowboy1997

Posted by @cowboy1997, Dec 31, 2016

Colleen my husband could not get this to work

jamienolson

Posted by @jamienolson, Dec 31, 2016

@cowboy1997, maybe this takes some time before the email change takes effect? I will check into it and let you know.

rosemarya

Posted by @rosemarya, Dec 31, 2016

@cowboy1997, I once had a difficult time changing my settings. Then I realized that I was logged into Connect on 2 different devices. I had to log off each before my new changes were accepted. Rosemary

colleenyoung

Posted by @colleenyoung, Dec 31, 2016

Hi Cowboy, It should be a simple change, but obviously something isn't working as it should because now you're photo got messed up too. I have submitted the issue and it will be corrected shortly. Thanks for your patience.

Rosemary, you are correct that you have to logged out on all devices for changes to take effect. Thanks for pointing that out.

katemn

Posted by @katemn, Fri, Jan 6 at 1:48am CST

Hello Marie, welcome to our Forum. I hope people from our group can jump on and give you some help. Please keep coming back .. and read back pages .. there is a lot of good information on our MAC disease to help you on your journey! Hugs to you. Katherine

donut

Posted by @donut, Fri, Jan 27 at 11:46am CST

I have the same problem. I have been able to endure so far. How are you doing?

debymacc

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.

heathert

Posted by @heathert, Mar 7, 2016

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?

donut

Posted by @donut, Fri, Jan 27 at 11:47am CST

I thought I recovered and after 6 months its back. How are you doing?

donut

Posted by @donut, Fri, Jan 27 at 11:49am CST

How are you doing Heather. I have MAC as well. I thought I was cured but after six months I am going to a new doctor. Yuck. I feel very tired most days. I want to find somewhere to go that I can be cured. I want to live a wonderful life. How are you doing?

heathert

Posted by @heathert, Fri, Jan 27 at 1:48pm CST

Hi and welcome @donut I am doing ok, been on the 3 meds for nealy 2 years but was put on them 3x week(18mths) rather than daily(I have cavities) which I am now on along with Amakacin inhaled, have a ct scan next month. How long were you on the 3 meds before they said you were MAC free, and did you stay on the meds for a further 12 months?

donut

Posted by @donut, Fri, Jan 27 at 7:09pm CST

I was on the big 3 for 18 months. I just I wasn't on it long enough I guess. Are you doing ok?

katemn

Posted by @katemn, Fri, Jan 27 at 9:00pm CST

@heathert, Heather, thank you for jumping to support a new comer! Hugs! Katherine

heathert

Posted by @heathert, Sun, Jan 29 at 1:30pm CST

Hi @donut , I am doing ok. Yes it seems 12 months of treatment after clear sputums doesnt seem to be long enough to keep it away maby they need to up the meds to 2 years after 3 clear sputums? I havnt heard of that happening yet but if they can get rid of some of the MAC with time they should be able to rid us of all of it.

jcarr

Posted by @jcarr, Sun, Jan 29 at 4:24pm CST

I had a cold in October and it seemed to settle into my lungs. I still have some mucus, so asked my pulmonologist for advice. He said if I am still coughing we could try an inhaler such as QVAR 80, 2 puffs 2 x day for about 2 weeks. If no better, get a chest xray.

Do you have any experience with this inhaler?

katemn

Posted by @katemn, Sun, Jan 29 at 6:11pm CST

@jcarr, (do you have a first name .. more personal!) FIRST question: have you been diagnosed with MAC.

Secondly, yes, I have been using Qvar for quite a long time .. it helps me a LOT in coughing up the mucus from my lungs! BUT I know it is important if you use it to use good inhaler hygiene .. my personal recommendation from my File Cabinet is .. hope you find it helpful! Hugs! Katherine

INHALERS-USE
BUT after some thoughts I realized some things I have been doing wrong and this is my new routine:
1. using inhalers PRIOR to brushing my teeth (had been using after)
2. use an Aerobika device . Use a "huff" cough, (like you were cleaning your glasses and fog them with your breath only more forceful), along with the Aerobika, you can pull mucous out of those lower airways.
3. using peroxide to dampen my toothbrush with toothpaste to brush (purchased a squirt dispenser)
4. using peroxide after brushing for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm

katemn

Posted by @katemn, Sun, Jan 29 at 11:41pm CST

@donut, Donna, a question I have been pondering .. DID they stop your antibiotic treatment AFTER negative sputum cultures for TWELVE months which is standard procedure? What was the criteria for stopping your treatment .. what reason did they give you? Also .. what type of doctor were you being treated by? An Infectious Disease doctor who treated other MAC patients? Just wondering? Hugs! Katherine

donut

Posted by @donut, Mon, Jan 30 at 12:40pm CST

It has been a terrible situation. Very long story. However, after my U of L doctor didn't know what to do he was sending me to a ID doctor that never called back to set me up an appointment. After several phone calls and my trying to continuing running our businesses I went to my local family doctor and said could you help me if I gave to you information of dr. and then I could be tested her with you and you could be advised as to what to do next. She said yes to help me I traveled to a conference in Maryland and gave her all the information. She treated me with the same med big 3 for the remainder of 18 months then when it looked like I was all better she took me off. We didn't really know what to do. I thought maybe I should have been tested before I stopped but she said if you don't feel sick just stop so I did and Last November it came back. I have taken advise from this forum and have made appt with Mayo Clinic and have consulted with my local clinic and they said they will support me. However, if I have to go back to Mayo Clinic several times to get better I will. Dr Timothy Aksamit, Md is who I have the appointment with on March 1, 2017. I live in Indiana he is in Minn. but I want to live!! Amen!I so appreciate this group! God Bless everyone. Donna 

katemn

Posted by @katemn, Mon, Jan 30 at 12:58pm CST

@donut, Oh Donna, THANK HEAVEN you are FINALLY getting to Dr. Aksamit. TRUST that you are getting to "mecca" ... AND to one of the kindest .. loveliest men I have ever encountered .. frankly I just love him .. SO grateful I found him after I was diagnosed with MAC in 2007. You ARE going to LIVE .. KNOW that .. TRUST that .. KNOW that everyone on this Forum will be here for you every step of the way .. you found us .. we will not leave you.

I just CANNOT read "then when it looked like I was all better she took me off" without getting SO angry! Doctors take an oath "DO NO HARM .. that ALSO MEANS .. if you are NOT qualified with ENOUGH knowledge to TREAT A DISEASE .. REFER IT OUT TO SOMEONE WHO IS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It is just unconscionable that she took you off the antibiotics WITHOUT twelve months of negative sputum samples. Sorry but it makes me SOOOO mad! Well off my high horse! Just glad you have an appointment .. you WILL live! Hugs! Katherine

donut

Posted by @donut, Mon, Jan 30 at 2:26pm CST

Thank you again for your kind support. May God Bless, Donna

windwalker

Posted by @windwalker, Wed, Feb 1 at 9:42am CST

Hello! I am SOOOO glad you chose to go to the Mayo. You will definitely get
proper care there! Let us know how it went for you. Hugs, Terri M.
 

Paula_MAC2007

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.

I WOULD LOVE TO GET IN A STUDY WITH OTHERS WITH MAC!!!!!

windwalker

Posted by @windwalker, Dec 10, 2016

Hi Paula, are you a Mayo Clinic patient? And was that lavage treatment a 'whole lung lavage' where they actually run liters of saline through your lungs?

Paula_MAC2007

Posted by @Paula_MAC2007, Dec 14, 2016

Hello @windwalker,
I'm replying to your two questions from 4 days ago ... sorry for the delay in answering.
(1) Am I a Mayo Clinic patient? No, I live in SE Wisconsin and have been treated at Froedtert Hospital which is affiliated with the Medical College of Wisconsin. . . they're very knowledgeable about NTM/MAC. Are located 90 miles north of Chicago and yet SE Wisconsin is a hotbed for MAC, and not Chicago. Go figure!
(2) Was that lavage treatment a 'whole lung lavage' where they actually run liters of saline through your lungs? Yes, that's what they did and then suction out the fluid and analyze the results. That way, they get cells from throughout all areas of your lungs. Totally painless.
Paula

donut

Posted by @donut, Fri, Jan 27 at 11:52am CST

How are you doing Paula? I have MAC also. I have had low Vit D as well. It is better now. But my B6 is low now. So I am taking B6. I was in remission for 6 mon but it is back. I am in Indiana. I am looking for a doctor that is knowledgeable about this disease have you had any luck?

katemn

Posted by @katemn, Fri, Jan 27 at 9:07pm CST

@donut, it is important that you read through the past pages our of Forum so that you educate yourself about our shared MAC disease .. THEN you will be able to do your 'due diligence' in choosing a GOOD Infectious Disease doctor .. DEMAND excellent care .. KNOW what testing SHOULD be done .. WHAT AFTER care should be done. REMEMBER @donut, NO ONE cares about your body the way you do .. YOU must be your OWN best advocate .. BUT without REALLY understanding our shared MAC disease .. you will NOT be able to advocate for yourself. So you go girl! Educate yourself .. ask any questions after you have read the pages .. but I think you will pretty much answer your questions by reading. Hope this helps! Hugs to you! Katherine

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jh

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.

dixer

Posted by @dixer, Sep 5, 2016

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

donut

Posted by @donut, Fri, Jan 27 at 11:54am CST

JS you are an inspiration. Who is your doctor and where do you live? I live in Indiana. I am looking for a knowledgeable doctor. Praise God!!!

ehliny

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!

tdrell

Posted by @tdrell, Aug 22, 2016

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 right...you got another Mac infection from the bronchoscopy?terri

katemn

Posted by @katemn, Aug 22, 2016

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

tdrell likes this
blc

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

maryke

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.

jilltpayne

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.

maryke

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.

jilltpayne

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.

Paula_MAC2007

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: http://www.nationaljewish.org/healthinfo/conditions/ntm/
(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.

maryke

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.

jilltpayne

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.

Paula_MAC2007

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

marr

Posted by @marr, Jul 2, 2015

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

debymacc

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 *

jilltpayne

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.
>

Paula_MAC2007

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

jilltpayne

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.

Jill

boomerexpert

Posted by @boomerexpert, Aug 6, 2016

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

windwalker

Posted by @windwalker, Dec 10, 2016

Hi Deby! Where did you get treatment?

mcsnudge

Posted by @mcsnudge, Wed, Jan 4 at 11:38pm CST

Applesause makes them go down without any effort.

donut

Posted by @donut, Fri, Jan 27 at 12:02pm CST

awesome. are you still doing well?

melissa23

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.

debymacc

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.

melissa23

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.

katemn

Posted by @katemn, Aug 8, 2015

Melissa,
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!

tdrell, jillnalani, e345l and 1 others like this
windwalker

Posted by @windwalker, Dec 10, 2016

Hi Melissa. I believe your treatment was supposed to include a third anti-biotic along with the other two. I think it is called rifanpin or something like that that. Raynaud's is an auto-immune disease and as such leaves one suseptable to weird infections. Def get to the Mayo.

shirleyfoggepiazza

Posted by @shirleyfoggepiazza, Dec 10, 2016

Rifampin

donut

Posted by @donut, Fri, Jan 27 at 12:06pm CST

Kate: Where is Dr. Aksamit? I need a good doctor for my mac

katemn

Posted by @katemn, Fri, Jan 27 at 8:56pm CST

@donut, I go to Dr, Timothy Aksamit at Mayo Clinic, Rochester MN .. he worked with a team of several doctors .. you can't go wrong going to ANY of them. Below is some good info on doctors hope it helps:

MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
* Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.
For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s
MAYO CONTACT INFO .. JACKSONVILLE FL
@windwalker, Terri shared 01/17 : Mayo Clinic in Jacksonville, Fl. and I see Dr. Jack Leventhal (pulmonologist) he has been a real blessing and life changer for me. The Mayo has an easy to use website with a "make an appointment tab. You do not need a referral. They have a dept to ask if your insurance will cover you there. They are a non-profit hospital, therefore, they don't gauge on pricing either.
*Another member: pulmonologist at the Mayo Clinic in Jacksonville FL. His Name is Dr. Jack Leventhal. This man has saved my life I am sure. I was put on alternating monthly antibiotics for three yrs. that worked for a while. Now I am on alternating months of an additional antibiotic called tobramycin. It is super expensive but it has totally dried up the infection. It is what they commonly give to CF patients to help keep the myco-organisms at bay
*or Dr Chandler.
+++++++++++++++++++
JEWISH NATIONAL HEALTH

https://www.nationaljewish.org/treatment-programs/directory/ntm

on the rigorous tests without worry about paying for pricey tests....especially as they were added.
*From Member @tdrell Terri who was diagnosed at National Jewish Health for MAC in Denver * The reason MAC was found in my lungs when I had the bronchoscopy was that I have severe GERD and since it...NTM is in tap water....it had been aspirated into my lungs as I slept plus silent aspiration during day into my lungs.

melissa23

Posted by @melissa23, Jun 20, 2015

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

kamuning80k

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.

jms64

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.

melissa23

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,,
Melissa

maryke

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!!!!!

Paula_MAC2007

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.

Paula

digmeme

Posted by @digmeme, Jun 15, 2016

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!

turtle3656

Posted by @turtle3656, Jun 20, 2016

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

katemn

Posted by @katemn, Jun 20, 2016

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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