Discussions By Condition: Infectious diseases

Mycobacterium avium complex

Posted In: Infectious diseases 22 Replies
  • Posted By: Michellina
  • October 17, 2006
  • 08:20 PM

I was just wondering if this infectious disease is fatal. Please let me know...

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22 Replies:

  • Don't qoute me on this but, I think that if this condition is left untreated that it can cause death. It occurs most often in those with HIV. However it also can occur in those without HIV. I fit into the latter. I had pnemonia this summer and my xray came back abnormal. It was first believed that I had TB, which was quite scary. Later after several different tests I was told that I had MAC. I am currently taking 3 different types of medicine. The only problem that I have had with the medicine is that one of them or the combination of the three has caused me some nausea which only adds to my weight loss. I am told that will have to continue to take the meds anywhere from 9 months to 1 year. It is also possible that I will have to continue one of the meds for the rest of my life. I know that I may not have answered your question, I am sorry, but thanks for letting me share a bit of my story. It is important however if you or someone you love has MAC that they are treated. Sue
    oconnellsm85 1 Replies
    • December 1, 2006
    • 03:22 PM
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  • What medications are you on? I have been diagnoised with non-tuberculous mycobacterium avium complex too. My doctor wants me to go through treatments with rifabutin, clarithromycin and I believe another one as well. What are your side effects?
    Anonymous 42789 Replies
    • January 3, 2007
    • 09:51 PM
    • 0
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  • I just read your post tonight.. I have an NTM bacterial desease too, infact I have 2. Ive had surgery on my lung to remove deseased parts..I am taking 2 antibiotics orally and 1 by IV everyday, I have a PICC line inserted and somedays its very hard.. Today I went to the dr and I finally got some good news, my right lung is getting better nd my left is only showing a worsening on the lower part..I havew gone to National Jewish Hospital in Denver. They helped me more then any other dr. If yu can find a good dr. and be put on the right meds, you can live with it. I talk to a support group through National Jewish and it helps so much to know you're not alone, and some of these woman have lived with this desease for years..on and off the medicine, some times are better then others, but you do it day by day..Somedays I would just cry thinking of doing my own IV meds, but now I'm glad I did and never missed one, even though all the meds have bad side effects, you just do it. I know Ill be on and off meds forthe rest of my life and somedays it doesn't seem worth it, but it really is. Post again if you'd like to talk..I have been through alot and had many drs 4 or 5 before I found one that cared. Good luck I hope 've helped some.
    cathln 6 Replies
    • January 12, 2007
    • 00:35 AM
    • 0
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  • please try grapefruitseed extract in a little juice daily to see if your problem improves.May the Lord bless you
    Anonymous 42789 Replies Flag this Response
  • Hi I also have MAC. It is not life threatening unless you have HIV. Also left untreated it can spread to other organs . I do not have aids. I have emphysema. I am on 2 different meds and the only side affect was feeling sick. So now I take them all at bedtime and I am actually feeling better. I was told its a very slow process but if you keep taking the meds, then eventually it will go away without causing long term damage to the lungs. I have MAC all on my left lung and part of my right lung.I look on the bright side I am only 44 and have a lot of life to live !!!!!! Although I am still very tired and now back to work for 4 hours a day. that is after 4 months of not working. It's tough, but I have to think positive. My only problem is why I got this. The doctors are still trying to figure it out! and for such a rare disease ,there seems to be alot of people with it?????
    Anonymous 42789 Replies Flag this Response
  • I don't have MAC, I have kansasii and abcsessus..one Ill get rid of, the other Ill have forever, Ill need to be on IVs often on forever. No one knows where I got these, some say soil, water, alpha one gene, shower head, hot tub, etc..Ive had these a long time but was only diagnosed 2 years ago..Some drs never heard of it and most don't know how to treat it.. I finally went to National Jewish Hospital in Denver, that's how desperate I was. I started to feel better and gain weight. I now have an amazing DR and Im lucky. My life changed completely..I had to give up my job, that I loved for 21 years, many friends get frustrated with a sick person or are afraid they might get it so they stay away...Im going back to Denver in April..I hope for good news..My life is somewhat better, but I can't work yet. Im just happy to have my granddaughter near me and be able to take her places again.. There are many,many mycrobacterias out there, I will never be sure how I got these, but I can be sure to keep as positive about it as I can and just do everything in my power to get well. Hope you are getting better too.:)
    cathln 6 Replies Flag this Response
  • My son who is 7 just got diagnosed with MAC. We are struggling as well since he doesn't have any immune issues. He was undiagnosed with Acid reflux until this week. We had been to ENT, Asthma specialists and GI drs non of them saw the acid reflux. After his pneumonia in February, I got in touch with a pulminologist who did a bronchoscopy and he said he was aspirating into his lungs. I read that people with acid reflux can be more at risk. If anyone can tell me what to expect, that would be great. You mentioned grapefruit extract, is this for MAC, what does it do for you. Are there any other natural path things we can do. We see the infectious disease dr. next week and I sure this will be followed up by drug therapy. Any insight to help us along in what to expect with our son would be great. ThanksChristine.
    Anonymous 42789 Replies Flag this Response
  • diagosis cancer vs. MAC oncology diagnosed my Mom with widespread cancer...lymphomic - liver cancer - even though no cancer appeared in her liver through a bioposy - no bone cancer detected via bone marrow extraction - and no cancer was detected though aspiration of fluid that are building up in her abdomen and right bottom of her lung. This diagnosis was made using a PET scan. Oncology recommended hospice and said she had about 2 weeks max because she would not survive aggressive chemo at 79 and in her weakened condition. She is frail and extremely fatigued. An infectious disease DR. got involved and diagosed MAC as her problem and started her on strong doses of antibiotics. We now have a little hope she will be cured however tests to confirm MAC take a while to complete. Infectious disease DR. said sometimes MAC is misdiagnosed via a PET scan due to the glowing nature of the infection under radiation. He also said if the infection is left untreated ...like oncology recommended, their conclusion quite possible would have been correct never know that she died from a treatable disease instead of cancer.....Just wondering if anyone else has ever heard of this happening.
    LONGWOOD 2 Replies Flag this Response
  • Are you from Longwood, FL? I'm from Oviedo, FL. I'm curious as to the prevelance of mycobacterium avium infections in this area. Probably no statistics. But as I talk to people about this, it seems to exist more than I would have ever thought.
    Anonymous 42789 Replies Flag this Response
  • I was interested to read your message. I am from Sanford, Florida and was diagnosed with pulmonary non-HIV MAC in January 2006. I basically had no symptoms and it was picked up during a routine annual physical chest x-ray (previously had bacterial pneumonia). I was treated for nine months on the 3 antibiotic program and have been removed from meds. Going back for a follow up CT Scan next month. I have a theory that the hurricanes of 2004 stirred up the soil so much that it released the MAC bacteria into the lakes and streams. We probably inhaled it more than usual at that time. I would be interested in hearing your story. You are correct that there is very little information about the disease and what you find on the internet can scare the pants off of you. Just be positive and go to a good lung specialist.
    Anonymous 42789 Replies Flag this Response
  • My 3 month old son died of non-HIV MAC in August of 2008. There isn't a lot of information on the internet and I was wondering if anyone has heard of this or has experienced at similiar situation.
    Anonymous 42789 Replies
    • November 18, 2008
    • 04:51 PM
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  • OMG.... I have read all the post and i am so scared... I have a 2 year old son who we have been told has MAC. He is on a 3 antibiotic drug therepy pluse a few others and has been for about 16 months. The mass in his chest has not gotten any smaller. we go to childerens hospital about every 3 months for test and updates. nothing has changed so we are going to go the National jewish hospital in denver, We are so scared... I can only hope hope hope for GOOD news! He goes to the eye doctor often and has blood work done atleast once a month, But we live at the doctors.... If there is any hope or if anyone has any info. to help please HELP!!!! Thank you. Hope in my HEART for every one!
    Anonymous 42789 Replies Flag this Response
  • My mother was just diagnosed with MAC. She is 77 years old and rapidly losing weight, she'd down to 87 pounds. She is on a combined treatment of Rifampin, Ethambutol and Clarithromycin, 3 times a week. The treatment is absolute misery for her, chronic headache, nausea, loss of appetite, no energy, extreme fatigue and I'm concerned that if the disease doesn't kill her, this medicine surely will. Has anyone had good results eliminating any of the above medications from their treatment? And is there a good remedy for the nausea...I'm afraid if she doesn't start to eat soon she'll do some damage to her heart. Any help I can get would be greatly appreciated
    cjfields 2 Replies Flag this Response
  • Hi... i can hardly believe all that i am reading about MAC without HIV. I was diagnosed in January of 2009. My XRAY was clear, but the contrast CT showed a 18mm lesion in my lower lung. Of course, went thru all the other even more frightening possibilities first. I did hear of it because my mother had it as well. I will never forget what she went thru 10 years ago before finally getting this diagnosis. She died 1 year ago of complications from ALZ and probably MAC although no one will say for sure. She suffered terribly. No one knows much about this at all and i am not tolerating the medications well. My lesion is still very small and i get CT's every 6 -8 weeks. I am determined to get more information so that my 3 children can avoid it or at least know if they are genetically prone it and try to prevent its' manifestation. I love gardening and growing my own vegetables and now wonder if that plays a roll since MAC is everywhere. If you want to lose friends, this is the disease to have. Who wants to be around someone with some bizarre bacterial infection? Please share what you know. God Bless.
    Anonymous 42789 Replies Flag this Response
  • I have been treated for MAC since the fall of 2009. I started with the 3 oral antibiotics, clarithromycin, rifabutin, & ethambutol. After about 3 months I developed a severe reaction. It was determined that I was allergic to the ethambutol, so now I have only been taking the other two antibiotics. Unfortunately, my congestion & cough is back. Often it ends up making me throw up. My doctor recommends adding a self-administered IV antibiotic 3 times a week to my regiman. I will need to have a PICC inserted in my arm for this & stay on it about 3 months. Has anyone else done this? I am a very active 60 year old & want to continue playing golf, kayaking, etc
    Anonymous 42789 Replies Flag this Response
  • I have been treated for MAC since the fall of 2009. I started with the 3 oral antibiotics, clarithromycin, rifabutin, & ethambutol. After about 3 months I developed a severe reaction. It was determined that I was allergic to the ethambutol, so now I have only been taking the other two antibiotics. Unfortunately, my congestion & cough is back. Often it ends up making me throw up. My doctor recommends adding a self-administered IV antibiotic 3 times a week to my regiman. I will need to have a PICC inserted in my arm for this & stay on it about 3 months. Has anyone else done this? I am a very active 60 year old & want to continue playing golf, kayaking, etcMy husband was diagnosed with mycobacterial after having lap band surgery. Infectious disease Dr has him on Zyvox. He's only been on it for 3 weeks so we really don't know if it is working.
    Anonymous 42789 Replies Flag this Response
  • :DI have been treated for MAC since the fall of 2009. I started with the 3 oral antibiotics, clarithromycin, rifabutin, & ethambutol. After about 3 months I developed a severe reaction. It was determined that I was allergic to the ethambutol, so now I have only been taking the other two antibiotics. Unfortunately, my congestion & cough is back. Often it ends up making me throw up. My doctor recommends adding a self-administered IV antibiotic 3 times a week to my regiman. I will need to have a PICC inserted in my arm for this & stay on it about 3 months. Has anyone else done this? I am a very active 60 year old & want to continue playing golf, kayaking, etc Never heard of this particular treatment but I do think your doc is wise to try other treatments if you're having trouble handling the Terrible Trio...R, E, and C. After 18 months of this drug treatment, my Mother's last scan shows NO PROGRESSION of the disease. She still has a cough but is gaining weight finally and feeling better except for the days she takes the meds, which will end in September. She was down to 82 lbs. and is now up to 100. We're thrilled. Most important advice I can give you is keep up your strength to fight this disease, EAT even and especially when you don't feel like it. Good luck to you.
    cjfields 2 Replies Flag this Response
  • OMG.... I have read all the post and i am so scared... I have a 2 year old son who we have been told has MAC. He is on a 3 antibiotic drug therepy pluse a few others and has been for about 16 months. The mass in his chest has not gotten any smaller. we go to childerens hospital about every 3 months for test and updates. nothing has changed so we are going to go the National jewish hospital in denver, We are so scared... I can only hope hope hope for GOOD news! He goes to the eye doctor often and has blood work done atleast once a month, But we live at the doctors.... If there is any hope or if anyone has any info. to help please HELP!!!! Thank you. Hope in my HEART for every one!My son is two years old and has MAC. I seen your post and thought I'd ask you, I can't find much info on the net. My son had three lymph nodes removed 6 months ago and took clarithomiacin. Today he had several more lymph nodes removed and the doctor prescribed arithomiacin for the next three months. I am so scared, I've read a lot of bad things and just don't know what to do. If you have any info please help me:)
    Anonymous 42789 Replies
    • October 23, 2010
    • 01:59 AM
    • 0
    Flag this Response
  • OMG.... I have read all the post and i am so scared... I have a 2 year old son who we have been told has MAC. He is on a 3 antibiotic drug therepy pluse a few others and has been for about 16 months. The mass in his chest has not gotten any smaller. we go to childerens hospital about every 3 months for test and updates. nothing has changed so we are going to go the National jewish hospital in denver, We are so scared... I can only hope hope hope for GOOD news! He goes to the eye doctor often and has blood work done atleast once a month, But we live at the doctors.... If there is any hope or if anyone has any info. to help please HELP!!!! Thank you. Hope in my HEART for every one! My son is two and has MAC. He has had several lymph nodes removed in the past 6 months. He was taking clarithomiacin and is now on azithromax. He has only seen the ENT and I'm wondering if he should be seeing an infectious disease doctor? I am so scared and don't know what to do. I'm tired of waiting for good news. The doctors say it's gone and then another lymph node pops up...His lungs are good...I just don't know what to do . If you have any info, please help me.
    bailey310 1 Replies
    • October 23, 2010
    • 02:26 AM
    • 0
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  • You said you went to National Jewish Hospital in Denver. What doctor did you see? My mom-in-law has been diagnosed with MAC and breast cancer. We're getting the run around so it was recommended she fly to NJH in Denver to see a doctor there. We'd never heard of this hospital - does it specialize in MAC? IF you have any suggestions, we'd like to hear it.
    Anonymous 42789 Replies Flag this Response
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