Share this:
loyd1230

mycobacteria

Posted by @loyd1230 in MAC & Bronchiectasis, Oct 12, 2011

This is a lung condition my wife apparently caught in Nevada. It is like tuberculosis but is not contagious. It has flair ups and causes coughs and shortness of breath,and can be life threatening. Anyone know anything about this disease.

Tags: lung conditions

Cassiemarie and Anguyen like this
loohoo78

Posted by @loohoo78, Nov 10, 2011

Her symptoms are very similar to mine, I am seeing the Pulmonology Dept in Florida next Thursday, The only culture that came back positive from the mass they removed from my right lung was from a mycobacteria, I still have the symptoms so if they tell me something Thursday, I will post.

greenest1

Posted by @greenest1, Apr 27, 2012

Hi! This is my first post ever here. I have MAC lung disease which was discovered a year or two ago. I have been on three antibiotics for the past six months and have about another year to go. For anyone who may be of interest, I belong to a private group of about forty people with this malady on Facebook. Very nice group. If interested just go to facebook Mac pulmonary disease and ask permission to join. In the meantime, good luck to you.......

shirslight

Posted by @shirslight, Apr 20, 2013

How are you doing? Have you been on any treatment for the past two years?
I am trying to decide whether or not to start treatment or let it go.

Posted by Anonymous-8952bfea, Nov 21, 2011

I was diagnosed in 2008 with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) .. 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! 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!

shirslight

Posted by @shirslight, Apr 20, 2013

I have recently been diagnosed with mycobacterium avium complex and am trying to decide whether or not to begin treatment similar to yours. How are you doing? Are you still on treatment?

dt14145

Posted by @dt14145, Sep 26, 2014

i have had mac for about 2 years need to ask some questions, david

katemn

Posted by @katemn, Sep 30, 2014

David I am out of the country so limited wifi .. return to USA October 7 ..could you write me then when I have better access?
Best regards,
Katherine
Friday, 26 September 2014, 11:36PM -03:00 from Mayo Clinic Connect :

dt14145

Posted by @dt14145, Sep 30, 2014

okay, I'll contact you again when you get back. David

katemn

Posted by @katemn, Oct 1, 2014

Thanks David .. I'm happy to help .. just as others have helped me!
Katherine
Tuesday, 30 September 2014, 10:40AM -03:00 from Mayo Clinic Connect :

joyceardell

Posted by @joyceardell, Jul 25, 2013

I was recently diagnosed last month with MAC/MAI I need more education I need a second opion I had a bronchosropy at University Wis. I would like to see a specialist that concentrates on this disease. I am a 16 year breast cancer surviver. I liked your information. I did google that before. But I have all sorts of questions. Not good at these chacts u can emal me please. Thank. u.

dt14145

Posted by @dt14145, Sep 26, 2014

any info on mac night sweats. david

dt14145

Posted by @dt14145, Sep 27, 2014

how do i connect to people with mac. david

dwh

Posted by @dwh, May 25, 2012

I am gasping for breath with any exertion: showering, walking, especially up stairs, and sometimes I get out of breath just from talking for more than a couple minutes. I am 49 and have been gradually getting worse for last 3 years. My throat sometimes feels constricted and gets sore when I talk at length. Never smoked. Haven't been out of the country. I've had numerous tests, all normal: heart cath, lung scans, allergy tests, neurological, MRI, thyroid, endoscopy, chest x-rays, diaphragm radiology, and countless blood tests. I've had 2nd and 3rd opinions on many of these. Still no answers. I can't work full-time, and some days not at all.

katemn

Posted by @katemn, Aug 16, 2015

Can't hurt to request a sputum test .. that was how I was diagnosed with Mycobacterium Avium-Intracellulare (MAI) Infection. I had never smoked either.

pal131

Posted by @pal131, Sep 12, 2013

I have been diagnosed with MAC and also brochiectusis from a pulmonologist at Mayo Clinic in Jacksonville FL after going to several internal medical Drs. who really never mentioned either of these diseases. They always did a chest xray and usually gave me a prescription for some type of antibiotics. When that didn't work they would try another one.
Dr. Leventhal said that it can only be seen with a CT scan and that it usually only affects thin white women.
MAC stands for mycobacterium avian, he indicated that it was spread through bird droppings that filtrate into the ground then into our water supply.
I have many of the symtoms others on this blog have explained. I usually feel quite well but get spirts of feeling rundown, no energy. After talking in a loud restaurant my voice is completely gone because of exertion. I also get sick when I travel, I assume because of the stress and change of my regular scedule.
I am very interested in this blog and comments from others suffering with these.

katemn

Posted by @katemn, Aug 16, 2015

WOW!! This is NOT what I have been told by my Mayo Clinic Doctor at Rochester MN!! This disease is called: MAI/MAC. All you have to do to educate yourself is google this phrase. One resource is: https://aidsinfo.nih.gov/education-materials/glossary/1608/mycobacterium-avium-intracellulare-(mai)-infection since it was frequently found initially in the HIV population.

You will note it is: Mycobacterium Avium-Intracellulare (MAI) Infection .. AVIUM WITH AN M .. NOT an N! (avian would indicate relating to birds) I was told doctors don't have a clue .. there is no accurate research as to how it gets in our lungs. Mycobacterium is in water .. in the soil .. all over our bodies .. it just is NOT supposed to be in our lungs. BUT there is NO accurate research showing how it gets in our lungs. PLUS my doctor has NEVER indicated anything about bird droppings since bird would indicate AVIAN .. NOT Avium.

So I am VERY confused as to just what your doctor is telling you because for myself i was ONLY diagnosed with MIA/MAC with a sputum culture which CLEARLY indicated EXACTLY WHICH strain of Mycobacterium I had. He ALSO did CT scans and Xrays .. but it was the sputum cultures that gave him the necessary info to know what to do about the MAI. That led my doctor to then be able to know exactly WHICH antibiotics would work against those two particular Mycobacterium that the culture showed I had . (Dr. Leventhal said that it can only be seen with a CT scan)

I guess my only suggestion is that you do your own "due diligence" and educate yourself about your illness and then don't give up until you have answers that satisfy you .. and your body. Good luck!

skinny

Posted by @skinny, Aug 16, 2015

Has anyone had vision problems associated with ethambutol? I am 3 months on the drug, 1200 mg/d, 17 mg/Kilo, and I have required 2 corrections for my glasses, and will soon need another. Thanks

katemn

Posted by @katemn, Aug 16, 2015

I was on Ethambutol 800mg for I think about 6 months .. began to loss my color and distance vision. Luckily I noticed it .. had a GREAT doctor who picked up on it and IMMEDIATELY took me off it. I then took: Azithromycin 250mg/ Avelox 400mg/ 2-Rifampin 300mg/ Amikacin 2ml-inhaled 3x week until 5/14 (5xwk until 10/12). On May 2014 I became negative .. after 30 months of meds and have been negative since.

Hope this helps. Personally I would NOT take the Ethambutol again. Perhaps I had to take the other meds longer .. but at least my vision came back within a year as good as it was originally!

UPDATE:
Sharon, NO .. I did NOT go on the meds immediately!

I was diagnosed with Mycobacterium avium-intracellulare(MAI or MAC) in August 2007 by a sputum culture.. I REALLY did not want to go on the treatment of 3 antibiotics for 18 mos to 2 years that 2 different doctors called "toxic"! But in 5/11 they found a 2nd Mycobacterium in my lungs that now necessitated 5 antibiotics and I ended up not getting a negative culture for 30 months! I now wish I had done the antibiotics when I was first diagnosed in 8/07 but truthfully I had read so many horror stories on message boards that it scared me.

That is why I feel it is my responsibility to take my time (my husband is very ill) to let others know you will NOT have all the terrible side affects! Each person is different .. each of us has our own journey. BUT we are only given one body for this life time and we must take the best care of it that we can. Go in peace and be blessed by the good things that ARE still in your life. Each day I make sure I am aware of my "gratitudes" and feel blessed for them. There are ALWAYS those with a harder life than I have .. I am blessed with what I have.

pal131

Posted by @pal131, Aug 23, 2015

It sounds like you had a very good result! Did you go on all of these drugs
at an early stage?
You seem like one of the only people that I have conversed with that had
such a positive ending.

Do you know how to get on the Facebook group? I know that someone
suggested it, but I don't understand how to request getting into a group. (Not
that computer savvy)

Thanks, Sharon

greenest1

Posted by @greenest1, Aug 16, 2015

Hi, I was only able to take the cocktail for MAC for 9 to 10 mos. and suffered with GI and skin problems too severe so we had to stop. My vision was not affected however, my hearing was and though I've been off the meds for two years now, my hearing did not improve. It seems the time I spent on these antibiotics helped a great bit. I am due for a CT in a month or two and we'll see then how things look for me. I belong to a Mac group on FB that is private. We have nearly 90 members if you are interested. It is a Mac lung disease group and you could request to join if so interested. Nice bunch of folks on there. Good luck to you, John. 🙂

cassiemarie42

Posted by @cassiemarie42, Aug 16, 2015

Hi,

My name is Carole and I'm very interested in joining your FB group. I was
first diagnosed with NTM (MAC) in 2004 at age 62. Went on the "cocktail"
for 2 years and tested negative for about a year. It's back now with a
vengance. No treatment this time...yet, due to poor health. Seeing a
National Jewish doctor next month.

Would love to read others stories and share experiences.

THANK YOU!

greenest1

Posted by @greenest1, Aug 17, 2015

Hi Cassiemarie,

I am the same age as you are. Anyway, go onto FB and just type in Mac lung
disease..you should be able to request to join the group. Good luck and if
you have problems with that let me know and I can see what further I can do
to help. Sorry to hear about the return of your MAC...Dot

katemn

Posted by @katemn, Aug 16, 2015

Carole, I would suggest that you go back and read all the posts from the beginning. I know I have learned a lot from this group. Perhaps you could also .. and find support. Stick with this thing. I have been negative since May 2013 .. and my Doctor at Mayo Clinic has me come back for a check up every 6 months to make sure I stay negative .. OR he catches it quickly if the MAI/MAC comes back.

I know I have never forgotten a story I read years ago in my 20's about a woman who ended up going to 17 doctors before she got an accurate diagnosis of her symptoms. That stuck with me in raising my children and regarding my own health. You know your own body. Trust your inner wisdom and do what you feel is best for your body! Sending you LOTS of positive energy and support! Katherine

Joanne likes this
irene5

Posted by @irene5, Nov 6, 2016

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

katemn

Posted by @katemn, Nov 6, 2016

Irene, this is really serious. My heart goes out to you. BUT you MUST be proactive in this situation. Your life and your health is at risk. I know the antibiotic treatment was difficult in the beginning .. it is for many people .. BUT it DOES get easier IF you have the right doctor helping you along the way .. starting the meds ONE at a time .. ONE week at a time .. letting your body adjust a little at a time can make it easier for most people.

If I sound like a Mama Bear .. I kinda am! It is SO irritating when male doctors tell females they are “depressed” when they come in with physical symptoms .. WITHOUT attempting to get to the physical ROOT CAUSES!! Luckily YOU know your body after having lived in it for a FEW more years than that mediocre doctor .. AND having a caring relative who sent you for additional testing!

BUT I really suggest you do some further reading on past pages of our Forum .. you will find that MANY have an initial difficult time with the antibiotic treatment .. BUT with help from a KNOWLEDGEABLE MAC Infectious Disease doctor who will listen and help you along on your journey .. you WILL adjust to the treatment .. and come out on the other side. I was on 4-5 antibiotics for thirty months .. AND have now been “stable” since May 2014 .. living a full happy life .. traveling .. having fun .. a good life! You can also!

I really do not think it matters where/how you got the MAC. There is a lot of debate and research going on right now on that issue .. but all you need right now to do is concentrate on getting the right help and treatment. You say “ I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved.” If I was sitting in your shoes here is what I would do:

FIRST request a copy of that: “a CT scan which showed the MAC, and consequent bronchoscopy confirmed it.” .. this initial medical information will be VITAL for any new antibiotic treatment. Do whatever is necessary to have the documents .. (you should request “Any and All Records”) be mailed to YOU directly! This eliminates the chance the documents do not get to the proper place .. you can hand carry them yourself!

THEN:
1. ask the Infectious Disease doctor at UMASS: How many MAC patients have you treated in the past 12 months? You want a doctor KNOWLEDGEABLE about our disease!
2. what would your treatment plan for me be
3. how would you handle side effects based on my past history

Before you do this Irene, I would especially recommend an article I just recently 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. Knowledge is power .. DO your “Due Diligence” in educating yourself .. no one cares about your body as much you do! Take care of that body so it can take care of you!
I have put the link below:

http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf

Irene, again, I am so glad you found our Forum! Keep coming back .. you will find a community of very kind supportive people who will be here for you on your journey! I hope the above is of some help to you! Sending you a hug in this difficult time! Katherine

skinny

Posted by @skinny, Nov 6, 2016

I am a 79 year old retired psychiatrist. I was diagnosed with MAC in 4/15 as part of the workup post pulmonary hemorrhage. I had already lost 35# from my baseline 170#. I was started on the Rifampin, Azithromycin, and Ethambutol. After a few weeks, my appetite and energy were worse. I was continuing to loose weight. I called my doc pointing out that he wanted me to gain weight, and I was so nauseated I couldn't eat. He advised me to stop the Rifampin and call him back if 5 days. Voila!!! The nausea was almost gone, and I started to eat more. I am now back to my baseline of 170#. My sputum cultures tuned negative in 2/16, so I am scheduled to stop the meds in March of 17. Please reconsider your plans. Talk to your docs about a different medication plan I think that I would have ended up like you if my doc had not been willing to try stopping the Rifampin. My wife, a retired nurse, also credits starting a Pobiotic with improving my appetite. From my 79.5 year perspective, you are still young. Your death will matter to those people who are important to you.

katemn

Posted by @katemn, Nov 6, 2016

Skinny, REALLY excellent response! Thank you for jumping in and helping! Hugs to you! Katherine

irene5

Posted by @irene5, Nov 6, 2016

Thank you. I have an appointment in Nashville in a month to revisit the "plan" as the MAC is in both lungs now. And yes, I have a wonderfully huge, loving, and devoted family who are my heart. I am so glad for your improvement.

skinny

Posted by @skinny, Nov 6, 2016

If I were involved in your treatment, I would consider this an EMERGENCY! and demand an earlier appointment. For the sake of your family, be your own patient advocate and demand an Urgent appointment. They already know the diagnoses and the initial treatment plan. 'Go get em'!

irene5

Posted by @irene5, Nov 6, 2016

Thank you. I wrote you quite a bit Katherine, but it vanished somewhere in cyber space. Suffice it to say MAC has been a huge "bump in the road" for me. You and "Skinny" have given me a lot to think about and a bit of hope. Irene

Please login or become a member to post a comment.