mycobacteria

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.

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

It sounds like you had a very good result! Did you go on all of these drugs <br />
at an early stage?<br />
You seem like one of the only people that I have conversed with that had <br />
such a positive ending. <br />
<br />
Do you know how to get on the Facebook group? I know that someone <br />
suggested it, but I don't understand how to request getting into a group. (Not <br />
that computer savvy) <br />
<br />
Thanks, Sharon

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

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.

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.

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'!

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

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