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    Old 09-30-2009, 06:08 AM   #1
    jrlh
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    MAC Micobacterium Avium

    My 88 year old mother-in-law has just been diagnosed with Micobacterium Avium-Intracellulare Complex (MAC). She does not have AIDS, nor is she immunocompromised. The doctor feels she is too old to treat, due to the possible side effects of treatment. Is this a progressive disease, is it contagious, and what is her prognosis if not treated?

     
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    Old 09-30-2009, 09:15 AM   #2
    Consie
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    Re: MAC Micobacterium Avium

    Welcome to our group. For a loooooog time no one posted and today I see 2 Mac listings !Yeah for that too bad it is that. As far as I know on one posting here is immunosupressed. We are mostly middle-plus aged,slight boned females. MAC/MAI is not contagious. It is an acquired disease that comes from soil or water,or air. I don't think any of us know how or where or when we contracted the bacteria. Eventually we are lucky enough to find a doctor who figures out what we have been trying to get diagnosed. Sometmes it takes years!! I don't know the specifics for your mother-in-law. It is up to her and the doctor to decide on her treatment options. The antibiotics used can have some bad side effects for some people. You need to think of quality of life. The best thing you can do is look for any information you can about this illness. A lot of sites have information if you look. Rules say I cannot tell you whiich but keep looking. Remember, most important is knowledge. With it comes the power to deal with this thing.

     
    Old 10-16-2009, 06:59 PM   #3
    Dory51
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    Re: MAC Micobacterium Avium

    Hi,
    I am new, too and I would like to join the MAC club for support.
    I was diagnosed with Mycobacterium Avium in September 2008.After I went through all kind of tests such as bronoscopy, culture and blood work, I started in November 2008 on 3 heavy antibiotics (Biaxin, Rifampin and Ethambutol) on Monday, Wednesday and Friday. That didn't make me sick in my stomach at all.

    Now I have side effects of Ethambutol that has affected to my eyes. I was referred to see a Neuro-Ophthalmologist in Birmingham, AL to have my eyes checked on October 3rd. The doctor said that he had a quite few patients similar as my case with MAC and Ethambutol that had afftected their vision loss. I stopped Ethambutol around Labor Day of 2009 and my vision keeps fading everyday. The doctor said the vision will return in 2 or 3 months. I hope so!

    I am not able to work for one month.Drivinga car is very difficult to see in dimness. This is really depressing and I am hopiing and praying to get my vision back through eye formula vitamins and multivitamins supplement. I just found out that my immune system is very low due to lack of Vitamin A through blood work.

    I have a wonderful and caring pulmonary doctor at local lung center. He sees to it that I will get better as long as I keep taking the medications...now down to 2 anitibiotics (Biaxin and Rifampin).

    I hope to hear from you or group of MAC Club.

    ~Dory51~

     
    Old 10-17-2009, 11:49 AM   #4
    Consie
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    Re: MAC Micobacterium Avium

    Welcome to the site. When I was first diagnosed in June 2006 this was where I had the most support and information sharing. I had the 3 drugs...rafimpin, azithromycin,and ethambutol for 22 months. Started 7 days a week and eventually went to Monday,Wednesday and Friday. Iv'e noticed in just this short time there have been advances and adjustments to the treatment. I had eye problems with the ethambutol, couldn't see at night to drive and was very sensitive to sunlight. Also caused a lot of hair shedding. These side effects did go away after a few months of being drug free. I have been checked for the Alpha 1 and am negitive but I do have a low immune system. Especially Vit A and D. My theory is that the reason we get MAC is because we do have lower immune systems than the "average" person. Thankfully mine isn't low enough to need all the injections, just lower than it should be. I go to a pulmonary doc and an immunologist who are both terrific. A lot of the other MACer's go to infectious disease docs but I haven't yet had the need. Keep posting.

     
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    Old 10-17-2009, 01:15 PM   #5
    Dory51
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    Re: MAC Micobacterium Avium

    Thank you for your reply and sharing your experience of Ethambutol side effects.
    Is your vision currently back to normal? I'll be scared to take Ethambutol again and I will definitely refuse to take it ever.

    I have been asked by several doctors how I got MAC. I am clueless!..Home grown vegetable garden? Flower garden? HVAC molded ducts?

    I am 58 years old female, 5'8" tall and slender (150 lbs -heavy-boned frame) plus hearing impaired since birth.

    Stay tuned ~

     
    Old 10-18-2009, 10:10 AM   #6
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    Re: MAC Micobacterium Avium

    Thanks for your reply. It seems to be rather rare. My mother-in-law (88) grew up on a farm. Could she have had it since then, and now it's giving her problems because she's older and can't fight it off anymore? I will keep looking for info, and reading your threads helps me to understand it better. I hope those of you with continuing problems get better soon.
    jrlh

     
    Old 01-16-2010, 11:51 PM   #7
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    Re: MAC Micobacterium Avium

    I was diagnosed with MAC last July. They first thought it was cancer because an x-ray in mid/late May showed a 3 cm hole in my right lung, but a subsequent CT in late May looked more like TB. Since I worked at a hospital, even the CDC was interested in my diagnosis. I had a bronchoscopy in early June that came back positive for AFB (Acid Fasting Bacilli), which meant I had a lung infection from one of the mycobacteriums. While waiting for the cultures to grow and give us a definite diagnosis, my pulmonologist started me on TB meds to at least "get ahead" of what was growing in my lung. My body overreacted to the meds and I ended up in the hospital for a week while they tried to figure out what to do next (I have multiple drug allergies).
    That was just the first three weeks of what has become a battle to keep what little health and sanity I can in the battle against MAC. I've been in the ER 5 times and hospitalized twice, the first for a week and the second for 4 days. My pulmonologist passed me to an infectious disease doctor when MAC was diagnosed since the later knows more, but I've ended up consulting with Mayo in MN because of the variety of other symptoms and the reactive rather than proactive medicine at home. My local ID doctor is great, but I just had a complex reaction at every turn. Mayo has been more than informative and helpful. They actually have a MAC clinic with doctors who specialize and research just MAC. I'm on the "young" end of the spectrum of MAC patients, but my body couldn't handle a "normal" dose of the medicines. Mayo took all of my previous medical records and assessed and worked with me to get me onto the third drug I needed. I highly recommend a second or third opinion before you give in to a level of care or lack thereof. MAC is supposedly slow growing and therefore slow to kill, but the 3 cm hole in my lung, which had probably been there for over 18 months, grew to 5 cm in less than 6 weeks. The longer you go without attacking this bacteria, the longer it will take to kill it, and the closer it is to killing you by taking over the air sacs in your lungs. Sputum cultures become part of your routine when you are diagnosed with MAC and although its hard to know if the MAC is totally gone, twelve months on the medications after your culture comes back negative is the current standard. Mac hasn't been kind to me. I've lost my job and I'm applying for disability (multiple problems aggravated since Mac arrived). I have an older sister who has been fighting MAC and other lung infections on and off since 1992. Luckily, I don't have the immune issues she has and hopefully will not have as long a battle with MAC. Oh yes, it can come back since it has scarred your lungs and diseased/scarred lung tissue is more prone to infection. I hope this helps someone in some small way to fight the good fight against MAC.

    Michigan Mom

     
    Old 01-17-2010, 05:14 PM   #8
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    Re: MAC Micobacterium Avium

    Dory51, you wondered how you got MAC. Have you been exposed to a hot tub? That is a very common way of contracting the bacteria and the way I think I got it. The bacteria breed in warm places like this and come out in the spray and then are breathed into our lungs. It doesn't effect most people but if you have underlying lung condtions, a person may be susceptible to it. Also, shower heads is another likely place to breathe in the vapor mist containing the bacteria. The bacteria is in our public water supply, and yes, I understand the earth as well. More women than men get it, mainly fair skinned slender women, midle aged to older, but not limited to us. As Consie says, knowledge is power, read as much about it as you can on line. Your doctors are asking you how you got it? That is unbelievable to me! They should be informing you about the disease. There is a lot not known about it, but your doctors should be more familiar with this than they apparently are. If they are asking you, they probably have patients who have it who they have not diagnoised. I was lucky, even though my symptoms were not lung related, my internist requested a chest X-ray because I had been feeling poorly for a long time. Nodules were found and then lung scan, Pulmonologist, bronchoscopy, and treatment. Do you have a good Pulmonologist who is familiar with NTM and treats patients who have it? This is so important. Have you been referred to an Infectious Disease doctor? Though MAC is not contagious, the ID docs usually do the prescribing of medications. Good luck and read, read, read, ask questions, search the board, the more you know the better! Peggy

     
    Old 01-20-2010, 08:54 AM   #9
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    Re: MAC Micobacterium Avium

    The most intresting thing about MAC is how sneaky it is! I don't think any of us MACer's know how we got it. It could be from going on a walk by a pond or from washing bird droppings off the car, gardening or hot tubs. I have never even been close to a hot tub so that's not it for me. I did spend lots of time at a pond and on a farm when I was young and have occasionally washed my car. Somehow though the MAC chooses us. I read that 1 in 200,000 people have the disease. It is probably more than that because so many are not diagnosed or diagnosed wrong. It took my pulmonary doc almost 2 years to figure out my problem.I had no bronchaestasis or other signs. Every test including the bronchopsy was negitive, just unidentified lung nodules. Eventually he had me have a VATS procedure and biopsy. Took the meds for 2 years and am no longer MAC active. I don't think the MAC ever leaves completely. I still get tired easily and have the occasional sweats and little appeitate. That is just my opinion and the doc somewhat agrees but says there is no way to know. One other thing is that I have stopped using bar soap. My own crazy idea that it can harbour germs and bacteria. Maybe I'm over cautious but it seems like a good idea.

     
    Old 02-16-2010, 02:58 PM   #10
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    Re: MAC Micobacterium Avium

    I am a 40 year old female. Had 40% of my right lung removed in May 2008. Had a mass the size of a tennis ball and they could not determine what it was. Had surgery and all was well until the following July 2009 when I returned for routine physical. Now I have a mass in the left lung. It is small in comparison to the first. Being treated with three antibiotics daily...no breaks. Have been on the meds for 7 months. Had a CT done in Feb and the mass is a little larger and now my adrenal glands appear abnormal... Doc doesn't seem concerned...says it is all part of it...I am however very concerned and tired of feeling tired all the time!

     
    Old 03-10-2010, 09:34 AM   #11
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    Re: MAC Micobacterium Avium

    Can MAC attack organs other than the lungs ? Has this happened to you ?

     
    Old 03-10-2010, 10:26 AM   #12
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    Re: MAC Micobacterium Avium

    Hi Galemarie, As far as I know, the infections in our lungs are confined to our lungs and do not spread to other organs. I have not heard of that happening and I communicate with many people who have MAC or related bacterial infections and am also in an NTM support group. I have M. Absessus and Pseudomonas and leave Sunday for National Jewish Hospital in Denver for evaluation and treatment. Keep searching for information and communicating; everything we learn helps. Peggy

     
    Old 03-12-2010, 07:06 PM   #13
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    Re: MAC Micobacterium Avium

    Quote:
    Originally Posted by chardonnay View Post
    Dory51, you wondered how you got MAC. Have you been exposed to a hot tub? That is a very common way of contracting the bacteria and the way I think I got it. The bacteria breed in warm places like this and come out in the spray and then are breathed into our lungs. It doesn't effect most people but if you have underlying lung condtions, a person may be susceptible to it. Also, shower heads is another likely place to breathe in the vapor mist containing the bacteria. The bacteria is in our public water supply, and yes, I understand the earth as well. More women than men get it, mainly fair skinned slender women, midle aged to older, but not limited to us. As Consie says, knowledge is power, read as much about it as you can on line. Your doctors are asking you how you got it? That is unbelievable to me! They should be informing you about the disease. There is a lot not known about it, but your doctors should be more familiar with this than they apparently are. If they are asking you, they probably have patients who have it who they have not diagnoised. I was lucky, even though my symptoms were not lung related, my internist requested a chest X-ray because I had been feeling poorly for a long time. Nodules were found and then lung scan, Pulmonologist, bronchoscopy, and treatment. Do you have a good Pulmonologist who is familiar with NTM and treats patients who have it? This is so important. Have you been referred to an Infectious Disease doctor? Though MAC is not contagious, the ID docs usually do the prescribing of medications. Good luck and read, read, read, ask questions, search the board, the more you know the better! Peggy
    Can you tell me what this means and the symtoms ? "M. Absessus and Pseudomonas"
    Thank you so much!

     
    Old 03-13-2010, 07:15 AM   #14
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    Re: MAC Micobacterium Avium

    I had an adverse reaction after taking the antibiotics for a year. I went into complete kidney shutdown, and, as a result, had anemia, as the kidneys produce a product to stimulate blood production in the bone marrow. I received 5 pints of blood. I am fine now and so are my kidneys. Sometimes the treatment is worse than the cure. It seems that both have the capacity to kill. Peggy

     
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