(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I 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!

I wrote on the 1 thread I found: 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!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@colleenyoung

Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator Timothy Aksamit, M.D. at Mayo Clinic:
Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219

Upon further investigation, I discovered that the trial is being done in 86 locations in 13 different countries. If you`re interested in participating, there may be a center near you that is involved. https://clinicaltrials.gov/ct2/show/study/NCT02344004?show_locs=Y#locn

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Thank you Colleen. I won’t be able to contact my pulmonologist until the end of the month, but I definitely will follow up. I don’t want to scare anybody, but after going thru some tests over the past few weeks, I learned that 1 or 2 new cavities of MAC have developed in my lungs, while some of my original MAC has shrunk (good new on this part!). I’ve been on the 3 drugs since 2007 – – but over the past 5 years only take every other day. I see my pumonologist again in August to talk about this and view my CT scans.

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@mimi68

Thank you for your response and concern. I wondered about another test that would be faster, as I really have trouble coughing up enough to get the sample, then once I get it to the lab it takes 12 weeks for the results. I think I’ll call the office and talk to his nurse about this. Maybe there’s an issue with the insurance (I have medicare), not sure. Have you had any side effects from the meds yet? Are you taking all 3 antibiotics and 3 days a week, or every day? I wish you luck with them and hope you can get over this infection and feel good soon.

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My pulmonologist called my husband today when I was out and told him he received the result of the sputum sample and it is positive. We aren’t sure if he is talking about the sample I took in 3 days ago or one from several weeks ago. He said he’s waiting for the full lab report and will call me next week. It’s still mind-boggling that I don’t have any symptoms. Of this, I’m very thankful, but can’t figure it out.

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@mimi68

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

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Hi Mimi,
I was recently diagnosed with bronchiectasis and MAC. Discovered because of a CT scan after some chest pain I was having. That has gone away and the only symptom I have now is a little fatigue sometimes. I’m waiting until my symptoms worsen before starting the antibiotics. If you read up on this you’ll find that the Medical professionals that deal with this all the time or are the experts – Mayo Clinic, National Jewish Health, NTM, and sometimes recommend waiting to start the treatment until your symptoms worsen. Katherine’s doctor – Dr. Aksamit wrote a paper that talks about waiting. Read number 5 in his article http://www.resmedjournal.com/article/S0954-6111(13)00379-X/fulltext . There are a LOT of doctors out there that don’t know enough about this. I’m thinking mine might fall in that category. I’d go to Dr. Aksamit if I could but I found out I’d have to pay for it out of pocket – my insurance wouldn’t cover it. So, I will make an appt. with an infectious disease Dr. that is listed on the NTM website http://www.ntminfo.org/ . I checked him out and NTM, in particular MAC is his clinical focus and area of research. He should be better than the pulmonologist I have. He can tell me how often I should be checked for growth, what tests to have, etc. We have to do our own research it seems and these message boards are invaluable. You have to do what makes you comfortable. Just do your homework and ask questions. Everyone here will try to answer any questions you have. It’s helped me sooooo much! Good luck! Janet

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@mimi68

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

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Hi Janet,
Thank you so much for your reply and this information. I will definitely check out the sites you gave me, and look further into this. I am glad to have found someone else who has been tested but with little or no symptoms. My pulmonologist is leaning toward starting the treatment now to get a head-start on it. I will keep in touch with you as to what happens next week when I talk to my doctor further about the lab reports. Thank you again and for your concern.

I went into the site you gave me for NTM Healthcare Physicians, and it asks me to register before being able to go any further into the site. I started to, but it looks like it’s for only doctors, etc. Did you have to register? If so, what about the questions they ask after your sign-in info?

Liked by Ali Skahan

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Hi Paula,
Thank you for this information. I will definitely listen to this. Looking forward to learning a lot.
Mimi68

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@digmeme

I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY……………yesterday…………………answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds…….high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils…….I wasn’t either……had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours……I am amazed………..and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it’s horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds…..he did not even mention the main 3 that everyone takes………….he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So………………if you question your doctor…………………go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes…..everyone is going to, but I am not going to die from MAI/MAC……………and I truly thought it was killing me! Hope this helps!

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Hi Katherine, I’m on my third week taking the meds now and I haven’t taken any probiotic, I also stop taking my vitamins b/c I’m afraid about side effect. A friend of mind suggest to eat a greek yogurt to help the cramping on mu stomach. What kind of probiotic and vitamins did you take? When do you take them and how much do you take? I would like to ask my Dr. but won’t see him until end of August. Does probiotic help w/ the side effect? Thanks for all the help.

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Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

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@digmeme

I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY……………yesterday…………………answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds…….high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils…….I wasn’t either……had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours……I am amazed………..and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it’s horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds…..he did not even mention the main 3 that everyone takes………….he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So………………if you question your doctor…………………go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes…..everyone is going to, but I am not going to die from MAI/MAC……………and I truly thought it was killing me! Hope this helps!

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Hello Cila, For me Dr. Aksamit mentioned probiotics right away .. so I would recommend you start a probiotic ASAP! This is what I did:
PREVIOUSLY I rotated 3 different probiotics daily .. purchasing ones with the MAXIMUM billion. By rotating you get different strains. As a result of doing that I did not have either a yeast infection nor thrust in all of those 30 months of antibiotics.

BUT RECENTLY I FOUND the below.. if I had it to do over again I think I might simplify it and JUST do this one probiotic daily and see if I could get by with just the one .. see what happened. BECAUSE it has 50 Billion PLUS it has 10 different probiotic strains .. ALL in just ONE probiotic pill! Now it does have to be refrigerated .. but I think it is going to be worth it. Even though I am not on antibiotics at this time .. I still take a daily probiotic for basic health .. this is the one I am now taking.
NOW Foods Probiotic-10,
(50 Billion, 50 Vcaps Healthy Intestinal Flora*, KEEP REFRIGERATED TO MAINTAIN POTENCY 10 Probiotic Strains, Dairy, Wheat & Gluten Free – Vegetarian/Vegan Formula) http://www.amazon.com/NOW-Foods-Probiotic-10-Billion-Vcaps/dp/B0031RJXCK/ref=sr_1_2_a_it?ie=UTF8&qid=1465156239&sr=8-2&keywords=probiotics+50+billion

I was told because of weight loss to have a protein shake made with yogurt each morning. I was told a good brand was: NOW UNFLAVORED 100% WHEY PROTEIN ISOLATE 10 LB. If you google it you can find where the best price to purchase is. Personally I put about 1/3 yogurt, big scoop of the Now protein powder, a bit of sweetner, fill my WONDERFUL Hamilton Beach Blender the rest of the way to the top with frozen fruit and blend away. (https://smile.amazon.com/Hamilton-Beach-51101BA-Personal-Blender/dp/B00KVZ27UA/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1466295509&sr=1-1&keywords=hamilton+beach+blender ) I get big bags of mixed berries, mangos, pineapple, peaches .. really whatever you like .. but blueberries are really healthy. It is a good way to get that healthy yogurt into your diet. I will be honest with you .. I was one of the lucky ones .. I did not have a lot of nausea .. I was able to figure out a schedule of taking my meds that enabled me to avoid many side effects except for sleep disturbance, fatigue .. needing a lot of sleep .. 10-11 hours per night. I am wondering if what you perceive as “cramping in the stomach” could possibly be “Gerds”? ie heartburn? Why don’t you google it and see if any of those symptoms seem like what you have. It is VERY common for people with MAC/MAI to have GERDS. If so you could even see your local doctor about that .. you don’t have to wait for Dr. Aksamit .. OR you could even try the over the counter “Zantac” which is often recommended for heartburn. But DO check with your doctor first!
You can ask Dr. A about vitamins .. but truthfully I have never found a doctor that much believes in them so never asked him .. BUT I personally am a BIG believer in them. This is just me personally .. but I read one time that Americans have the most expensive urine in the world! Ie that whatever vitamins your body does not need .. you excrete them through your urine. That is MY personal philosophy .. SO I am CAREFUL NOT to take more than the recommended fat soluble viamins (The fat-soluble vitamins, A, D, E, and K, are stored in the body for long periods of time and generally pose a greater risk for toxicity when consumed in excess than the water-soluble vitamins.) But I take plenty of the other water soluble vitamins. Personally I take the generic CENTRUM SILVER .. BUT I ALWAYS compare the generic with the actual Centrum Silver. I have found some generic brands sneaky! They are NOT equivalent! I have also added various water-soluble vitamins .. but do not feel comfortable advising .. to each their own. I would add that because I have some blood in my coughing Dr. A advised me to stop fish oil and baby aspirin .. anything that is blood thinning.

Hope the above helps .. sending you Hugs! Katherine

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@boomerexpert

Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread than I knew) infection. I believe the reality to be quite the opposite, and urge all diagnosed with this infection to push their physicians to advocate for change.
The facts are: the treatment for MAC/MAI is at least 20 years old…we would not abide by a physician prescribing a 20 yo treatment for cancer, for example; the treatment is proven over and again to be minimally effective, with numerous, intolerable side-effects (for some, similar to those associated with chemo); few doctors who treat this have a full understanding of just how awful the regimen is (as each may see just a few patients with the infection), (therefore) nor have they advocated for rigorous research into new, far more effective research, even with thousands more being diagnosed daily with this infection worldwide.
I urge all of you to insist your doctors visit this forum for a more complete understanding of the awful impact of these medications on patients (and you), push for more research into better treatments (particularly given the increasing amount of antibiotic resistance inherent in our society, from over prescribing and use in farm animals), and seek out doctors willing to try alternative treatment in lieu of the standard. I have done all three, and will continue to do so not just for me, but for all coming after me with this diagnosis…they deserve better…so do we.

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Paula, I so appreciate all your efforts on this Forum .. you are such a booster for people .. I think it really helps people newly diagnosed for people like you and me who have “been in the trenches” to take our time to take just a bit of the fear away. We know just how scary it is in the beginning .. BUT we also know that we have come out on the other side with some knowledge that we WILL survive .. we WILL live our lives despite the challenges. NOPE it isn’t always fun .. NOPE we wouldn’t always choose it .. BUT I sure as heck would choose it over what I see each and every time I go to Mayo Clinic for my check ups! Like you say .. Attitude of Gratitude. Stay the Course my Friend! Sending you a Big Hug! Katherine

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@colleenyoung

Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator Timothy Aksamit, M.D. at Mayo Clinic:
Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219

Upon further investigation, I discovered that the trial is being done in 86 locations in 13 different countries. If you`re interested in participating, there may be a center near you that is involved. https://clinicaltrials.gov/ct2/show/study/NCT02344004?show_locs=Y#locn

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Paula, I’m sorry to hear about the new cavities. Please keep us posted on your progress .. I’m sending you LOTS of positive energy .. AND my health inducing Hugs! Katherine

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@mimi68

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

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Hi Mimi,
You shouldn’t have to login unless you are trying to access the message board and then you would have to set up an account. One good thing to check out – If you can see the header bar – click on Healthcare, then Physicians Referral List, then your state. You will come up with a list of providers that specialize in MAC/MAI. Then click on the other items on the header bar for all sorts of information. I hope that works! I will continue to work with a pulmonologist but I’m going to see the infectious disease specialist Dr. listed for my state (NC) as he is the expert at that in my state. I want someone that has a better idea about when I should start treatment. I’m just not confident that my pulm. Dr. really knows that. Probably due to all I’ve learned here. The people on this site have done more to empower me and make me feel confident that this will just not be a problem. It’s something I’ll have to deal with, but things could always be worse and I have a support group to give me all kinds of hints on dealing with everything imaginable. What a weight lifted off my shoulders!!

Let me know how your tests turn out. I just had a bronchoscopy this last Wednesday so I should be getting some results in a few weeks I think. Take care. Janet

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@mimi68

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

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Hi Janet, I found the doctor referral list, unfortunately there are none listed within a couple of hundred miles from me (Vermont). I will keep searching though. Thank you again for your help and good luck with your test results; let me know how you make out. Mimi

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@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my “Due Diligence” .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your “Due Diligence”! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was ‘BECOMING MY DISEASE”! It became my FOCUS in life.

I had to have a “Coming to Jesus” moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I’m just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don’t allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn’t staring me In the face .. it doesn’t exist .. denial has worked wonders since 2007 and I’ve live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

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@katemn, your message yesterday was among the strongest, most sensible and reasonable, reassuring I have seen here or heard among my associates in my senior community. Too many of my neighbors dwell on the information they have — and the information they still want — about their infirmities (better word than “illnesses” or “diseases”). Their attention is dominated by the physical and mental miscues (better word than “accidents,” “foul-ups,” “injuries” and the like) they catch themselves enduring. I can’t say better what you have said above, so I hope everybody will read your solid affirmation of who you are and what you are not. Thank you so much.

Liked by Ali Skahan

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@mimi68

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

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Hi Janet, be sure to let us know how your bronchoscopy results turn out .. sending you lots of positive energy! Hugs! Katherine

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@mimi68

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

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Mimi, what WONDERFUL information you have shared with our Forum .. WOW! Such EXCELLENT resources .. thank you! Especially for resources of doctors in case your insurance will only pay for certain doctors. I have really found by googling the doctor .. finding out where they went to school .. their area of “interest’ .. their specialty .. all those kinds of things help me evaluate if that doctor might know enough about MAI/MAC to be a good fit for me. THEN I for sure want to know how many patients they have treated for MY disease! I have NO interest in being their guinea pig .. learning curve! I’ve learned the hard way with my own .. and my husband’s health to be careful in this manner .. you have done a GREAT job at this Mimi .. I applaud you! Thank you for sharing all your research!

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