MAC disease

can anyone explain to me about MAC disease.I was recently diagnosed,with MAC in my lung.They did a larvage bron. and grew the cultures which confirmed it.Can this go away on it's on,or overtime does it become more problematic?my symptoms are extreme fatigue,shortness of breath,sometimes with walking exercise, I hurt through my chest clear to my back.i do off and on do get hot,sometimes chills.of course sputum after getting up to start my day. it seems if I do more activity during day I do get a rattle in my chest.i am waiting for ID to set up a appt. soon.and how do they know if you need treatment?And why do you have symptoms if you don't have it all in your lung?i have the nodulars.about 3 or 4.Sorry about all the questions,but I am really anxious about getting answers.thanks to whoever can help me.God Bless

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MAC also known as NTM is mycobacterium avium complex . There is a site you can go to that I only learned of from these helpful people called NTM ( non Tuberculosis mycobacterium) Your Dr will probably put you on 3 heavy antibiotics. They have side effect you need to watch for but you will feel better. This disease can go into remission but I don't think it is ever cured.
You picked a good place to come as the people here are very caring and knowledgeable. I've learned more here then I have from my Drs.
Good luck to you and hang in.

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Hi, I was also just diagnosed...with MAI. Started on 2 of the 3 antibiotics one week ago and already feel oh, so much better! Lots of mucous breaking up. I think I have about 4 little nodes...so similar to the symptoms you are describing, fatigue, shortness of breath, air trapping. Before the diagnosis I was doing postural drainage and percussion, for several months. (I'm a retired x-ray tech/critical care nurse...never, ever imagined having a lung disease like this!). It helped, but the mucous was so thick nothing seemed to loosen it. I did get my doctor to prescribe saline by nebulizer...that has and continues to help. I'm wondering if anyone has heard of the use of essential oils in a nebulizer? I guess whether or not this condition goes away or goes into remission depends on so many other things. It is from a bacteria that is ubiquitous. I'm still spending up to a couple of hours a day, doing postural drainage. For the first time in a couple of years...I can breath. Didn't know how sick I had gotten....sorry you have this too! I hope you feel better real soon! So far, the antibiotics seem to be ok. I have been growing my own kefir for a couple of years...plan to drink it every day now. It is the very best thing you can take to get probiotics. If you grow your own, you are sure to have lots of those active and healthy bacteria...and it's so good for you. One thing I learned about kefir, the grains that culture milk "digest" the lactose...so even if you are lactose intolerant, you should beaable to tolerate kefir without the problems...I don't notice a mucous increase when I drink it, like I do with other dairy products.

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I've been doing a lot of research too...It IS scary! And wonder why my immune system "let this one through". So, I ultimately think that doing everything to improve general overall health and strengthen immune system is ultimately the most important thing...right now, I'm sure it will be awhile to heal...as it took awhile to get this "sick". Here are some links to sites I looked at, if you haven't already found them.
http://www.lungdoc.md/PatientEd/MAI.htm
http://chestjournal.chestjournal.chestpubs.org/data/Journals/CHEST/20384/14 82.pdfhttp://radiopaedia.org/articles/non-specific-interstitial-pneumonia-1
I hope these help....sorry you are experiencing this! The good news is...it IS treatable :-)

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Thankyou Carolyn.i will use these web-sites.Hopefully when I start it or if they treat it.i will feel better.

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Thankyou dixter,i hope to see ID sdoon,i hope and pray I have a good doc.take care my friend.

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Hi Blue: So sorry to hear your feeling so ill with Mac. I have had Nocardia Nova, I have Bronchiectasis and my MAI is in remission I just finished being on two antibiotics for 3 times a week for 20 months. Go to www.ntminfo.org it has a wealth of information on the website. I have been a patient advocate since I almost died from the Nocardia in 2008. I sent you a friend request I have some great info I would love to send you so you can refer to it as you go on your journey. I use the percussion vest and nebulizer with Hypersal 7% daily it takes 20 minutes if I'm not feeling good I do it twice. I have a full time job and also do photography on the side I try to live each day to the fullest and exercise at least 4 days a week and eat as well as I can. Sending you healing light and hugs. Hope to talk with you soon welcome to Inspire it's a wonderful group with very caring insightful people. :) Beth

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Hi Carolyn,

Could you please explain more about the postural drainage and percussion techniques you use? Does someone help you with procedure? I can only picture myself contorted up like a pretzel trying to percuss my own back! I'm also a retired nurse, and remember how we used to help patients with this.

Thanks,
Linda/Leilani

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Hi, About the postural drainage and percussion....I was a critical care nurse and trained in this as well as segmental drainage....I think getting head down is probably the most important....I have several places where it is comfortable for me to do....sometimes just the bed with pillows...sometimes reversing on the couch and head is on floor with feet on back of cushion. I wrap my arm around to get to different areas and then percuss...just a few days ago, started using a (homedics) hand help vibrating massager....that is working faster!, and I can hold the massager over my back where I couldn't reach before...also taight my boyfriend to do it...but he doesn't have the endurance I need....I'm finding it takes a fair amount of time to overcome the effects of gravity...and do a fair bit of twisting and turning and posturing to get the mucous to come out. Sometimes it is many teaspoons full!! Hard for me to believe that it all came from my lungs, and I know the docs haven't really believed me till now. I tried guiafenisen (robitussin, etc)...but that had very little effect on breaking up my mucous...it was pretty consolidated, like jelly...a week on the meds and it's oh, so much better! So...saline treatment, then head down...then the vibration....been doing it on front, sides and back, both lungs....I see a real decrease in the mucous...hope I don't have to keep doing this....but, it's only been a week.

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When does MAC become a disease?also,does it get worse?My dr. seems to think it will go away on its own,don't know if it is true or not.i think he isn't being truthfull.all my test came back after the bronoscopy he did.the cultures grew and that confirmed it.i am confussed after reading articles it says it doesn't go away on its own .i don't understand him.i have nodules that have been their for about 2 years and showing symptoms that seems to be getting worse,sob a lot,extreme fatigue,little anemic,chills at times,and also hot at times.comes out of no-where.he put a referral in for ID,schduled for next week.my only worry is the ID docter might blow me off.i just don't know what to do.maybe I should just not worry and deal with it and maybe it will go away.any suggestions would be great.thankyou .because I don't know what to think anymore.i am waiting for the last culture to find out what type. thanks bye

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Hi Bluecloud,

I'm sorry you're feeling so bad. It is very unusual for MAC to go away entirely, instead it can be controlled (go into remission) for periods of time with treatment, years even, and then may come back in the same or a changed form. If your current doctor says differently I would be very wary of his treatments and opinions.

I see from your profile that you are in the younger range for this illness--just a baby! Due to that, and all your symptoms, the infectious disease doctor (providing s/he is knowledgeable about MAC -- not all are) most likely will want to treat you.

Please let us know what you find out and we will all help and support you as much as we can.

Best Wishes,
Linda/Leilani

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Thank you Linda,
I live on Oahu, and I kinda question also.All I can do is pray that God will bless me with a wonderful Dr. that is very knowledgeable in this area.I see the ID docter next week which will be my first appt.I was thinking if maybe I should get him to test me for the alpha 1 def.I kinda read that some people who have that are likely to have this.But kinda hesitant. Anyway, I will keep you posted and let you know what they say.I am kinda worried they might not think it is a big deal and just recheck me every so often with a ct to see if it is growing and then treat it.?will see.Anyway,thanks so much. Lee Ann

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Hi Bluecloud, et al :-)

The NTMINFO.ORG website is AWESOME and really explains the disease. I am in remission. I had two - MAC and M. Abscessus. I was on the anti-biotics for 11 months. I am in remission - 2 years now. I am so grateful for the treatment and was blessed with AWESOME Dr.'s.

I saw some questions about "percussion". My Dr. gave me an Acapella Vibratory PEP Therapy device. This is a website that gives an explanation. Again, AWESOME and helps a lot. I take Advair twice a day, Spireva and use inhalers as needed, nebs, etc. I have an "episode" about every two - four months with the bronchiectasis/etc. But it's day and night from what I was.

I know that you will do good and feel much better. XOXOXO Prayers to you all :-)

http://www.smiths-medical.com/catalog/bronchial-hygiene/acapella/acapella.h tml

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Hi Bluecloud, et al :-)

The NTMINFO.ORG website is AWESOME and really explains the disease. I am in remission. I had two - MAC and M. Abscessus. I was on the anti-biotics for 11 months. I am in remission - 2 years now. I am so grateful for the treatment and was blessed with AWESOME Dr.'s.

I saw some questions about "percussion". My Dr. gave me an Acapella Vibratory PEP Therapy device. This is a website that gives an explanation. Again, AWESOME and helps a lot. I take Advair twice a day, Spireva and use inhalers as needed, nebs, etc. I have an "episode" about every two - four months with the bronchiectasis/etc. But it's day and night from what I was.

I know that you will do good and feel much better. XOXOXO Prayers to you all :-)

http://www.smiths-medical.com/catalog/bronchial-hygiene/acapella/acapella.h tml

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Hi Blue,
Yes it can be complicated as each Dr treats MAC differently. It seems like they all try you on the 3 "cocktail" Ethambutal, Rifampin and Zithromax" I hope I have that right. Then its up to how you tolerate the meds. About having 2 Drs, I have 2 because my ID Dr takes care of the disease and my pulmonory Dr takes care of labs, scripts and CAT scans etc.They do talk to each other often.It works out well for me. I hope what ever you decide will work out for you and I wish you a speedy recovery.
Stay well.
Maggie

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Hang in, Bluecloud, you have many people thinking good thoughts for you. Pls let us know how ID doc visit goes.

Best,
Linda

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Aw, BlueCloud..I am so sorry for your experience! I started on the meds two weeks ago...it's night and day, how I'm feeling. I woke up three days ago with energy and excitement...the first time in almost two years. I went to a number of people for help, and almost no one took me seriously...long story short...even though my current doc found the MAI, I'm going to be looking for a different doctor (I think)...when I tell an MD anything, I want to be believed!
I was doing some research on the NTM site. I noticed there is a DO in Honolulu recommended by their site.
Best of luck! I hope you get on the medications soon...and that you feel better quickly!

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Thanks a lot,i am just tired of feeling tired all the time.i am ready to start feeling better so I can get my groove on.Know what I mean.Especially my walking I love so much to do out here in this beautiful aloha state.:)aloha hugs Lee Ann

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I sure am looking forward to that. Mahalo :)

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Hi,

I live in Hawaii and there are two women here that I've met through these NTM forums - if you wouldn't mind, I will send you a friend request and perhaps we can correspond about physicians. Two of us have the same pulmonologist and it might be worth it to see him and see what he says. This is my second NTM infection for which my pulmonologist is treating me.

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Awsome,please call me.My number is 808-744-7419.Thankyou so much Rose.Aloha hugs:) Lee Ann

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