In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Sat, Aug 17 1:12pm

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot…have been doing it for years. This year we had a new mulch supplier…… I could use a pep talk, if anyone has that for this!!

@sylvermoon8 Your reaction is totally normal! Especially after you read some of the issues people are having with both the illness and the treatment. That said, read what you can to educate yourself. Make sure you are seeing a pulmonologist and/or infectious disease (ID) doctor who specialize in treating MAI and bronchiectasis. If yours is not, ask for a referral to someone else – this is not an easy thing to treat. My pulmonologist just "handed me off" to an ID doc because he had used all his usual protocols and they weren't enough.
As to the source of your infection, it COULD have come from gardening, OR your mulch, OR your soil, OR your tap water, OR a hot tub or swimming pool, OR from any of the above encountered as you travel. NTM (non-tubercular mycobacteria) are EVERYWHERE. You cannot completely avoid NTM without living in a bubble. The key is to take sensible precautions about exposure, eat a healthy diet, get proper rest, practice good lung hygiene as recommended by your docs based on the extent of your disease and symptoms, take prescribed antibiotics…and continue to live your life.
For example, I am and always have been an avid gardener. I am pretty sure the origin of my infection is exposure to soil contaminated by feral chickens scratching, nesting & pooping under my fruit trees in South Texas (winter home.) Therefore I no longer garden there, and have only a few potted plants. In addition, I close up my house & stay way while yard work is done, and the gardener washes down the patio afterward. At my summer residence, I continue to garden, wearing gloves always and an N-95 mask when it is dry, dusty or windy. I pay a young man to do the Spring cleanup and mulching and stay away while it is underway. I shower and launder garden clothes and gloves at the end of each workday, and replace the mask after 6-8 hours of use or if it gets wet (OSHA recommendation.)
In addition, I continue to volunteer, travel, hang out with my kids, grandkids and friends, and generally enjoy life – stopping to rest when my body demands. I try to eat well (a struggle on the Big 3 antibiotics taken daily), avoid being out on dusty, windy days (no more desert hikes) or wear a mask, stay out of hot tubs, take quick, non-steamy showers, neb and use my meds as prescribed.
One key I really believe helps me stay well – I, and everyone around me, practice excellent hand-washing & food/living space hygiene. This is easy at home, both my daughters are practicing nurses in high-risk environments, so they are relentless. Away from home, I try to be cautious, and if I'm going to be around new people, I try to do a little low-key, gentle education. I couch it in these terms "I have a compromised immune system. Getting a cold or the flu is devastating – it turns into bronchitis and then pneumonia and it puts me in the hospital. There are others in our little community with the same problem due to other illnesses. Please help us by thoroughly washing your hands, and by making sure all surfaces are thoroughly sanitized before every event. And please don't bring or handle food here if you are ill. Even better, stay home if you are ill, to avoid spreading germs…" Last year, after our first full season of this approach, we saw a noticeable decline in the number of illnesses that "went around" the community.

REPLY
@sueinmn

@sylvermoon8 Your reaction is totally normal! Especially after you read some of the issues people are having with both the illness and the treatment. That said, read what you can to educate yourself. Make sure you are seeing a pulmonologist and/or infectious disease (ID) doctor who specialize in treating MAI and bronchiectasis. If yours is not, ask for a referral to someone else – this is not an easy thing to treat. My pulmonologist just "handed me off" to an ID doc because he had used all his usual protocols and they weren't enough.
As to the source of your infection, it COULD have come from gardening, OR your mulch, OR your soil, OR your tap water, OR a hot tub or swimming pool, OR from any of the above encountered as you travel. NTM (non-tubercular mycobacteria) are EVERYWHERE. You cannot completely avoid NTM without living in a bubble. The key is to take sensible precautions about exposure, eat a healthy diet, get proper rest, practice good lung hygiene as recommended by your docs based on the extent of your disease and symptoms, take prescribed antibiotics…and continue to live your life.
For example, I am and always have been an avid gardener. I am pretty sure the origin of my infection is exposure to soil contaminated by feral chickens scratching, nesting & pooping under my fruit trees in South Texas (winter home.) Therefore I no longer garden there, and have only a few potted plants. In addition, I close up my house & stay way while yard work is done, and the gardener washes down the patio afterward. At my summer residence, I continue to garden, wearing gloves always and an N-95 mask when it is dry, dusty or windy. I pay a young man to do the Spring cleanup and mulching and stay away while it is underway. I shower and launder garden clothes and gloves at the end of each workday, and replace the mask after 6-8 hours of use or if it gets wet (OSHA recommendation.)
In addition, I continue to volunteer, travel, hang out with my kids, grandkids and friends, and generally enjoy life – stopping to rest when my body demands. I try to eat well (a struggle on the Big 3 antibiotics taken daily), avoid being out on dusty, windy days (no more desert hikes) or wear a mask, stay out of hot tubs, take quick, non-steamy showers, neb and use my meds as prescribed.
One key I really believe helps me stay well – I, and everyone around me, practice excellent hand-washing & food/living space hygiene. This is easy at home, both my daughters are practicing nurses in high-risk environments, so they are relentless. Away from home, I try to be cautious, and if I'm going to be around new people, I try to do a little low-key, gentle education. I couch it in these terms "I have a compromised immune system. Getting a cold or the flu is devastating – it turns into bronchitis and then pneumonia and it puts me in the hospital. There are others in our little community with the same problem due to other illnesses. Please help us by thoroughly washing your hands, and by making sure all surfaces are thoroughly sanitized before every event. And please don't bring or handle food here if you are ill. Even better, stay home if you are ill, to avoid spreading germs…" Last year, after our first full season of this approach, we saw a noticeable decline in the number of illnesses that "went around" the community.

Jump to this post

Thank you for the additional information. I am scared of taking so many drugs at one time. But then again I was treated some years ago for persistent Lyme disease. I was on 2 antibiotics at a time but they were easy ones really. I wonder do those of you that get the 3 antibiotic treatment take probiotics? My Lyme disease specialist had me on 2 while being treated. I have not had an appointment with my pulmonologist since my last CT and was surprised she wanted a biopsy so quickly. However if it will confirm exactly what I have that is good. After that I will look for a specialist I am not sure how far I will have to travel. I am near Baltimore and Philadelphia, that should help.

REPLY

Dr. Hansen-Flaschen at Hospital of University of Pennsylvania (HUP) in Phili is an expert in treating MAI infection.

REPLY
@catalin

Dr. Hansen-Flaschen at Hospital of University of Pennsylvania (HUP) in Phili is an expert in treating MAI infection.

Jump to this post

Thank you!

REPLY

The bronchoscope can be easy if you have a good anesthesiologist. I let them know how scared I was and they gave me enough medication that I didn’t remember any of it. Good luck!

REPLY
@sylvermoon8

Thank you for the additional information. I am scared of taking so many drugs at one time. But then again I was treated some years ago for persistent Lyme disease. I was on 2 antibiotics at a time but they were easy ones really. I wonder do those of you that get the 3 antibiotic treatment take probiotics? My Lyme disease specialist had me on 2 while being treated. I have not had an appointment with my pulmonologist since my last CT and was surprised she wanted a biopsy so quickly. However if it will confirm exactly what I have that is good. After that I will look for a specialist I am not sure how far I will have to travel. I am near Baltimore and Philadelphia, that should help.

Jump to this post

First, if you are coughing, can you ask them to try a sputum culture from your cough first? Or at least explain why they want a biopsy instead?
As for the 3 antibiotics, I won't say it's easy, but it can be done. Yes! to the probiotics – I take them every other day.
My biggest problems have been weight loss with lack of appetite and fatigue. If you watch the NJH video on food and nutrition, she gives good tips. Three of my strategies are Carnation Instant Breakfast in my morning coffee (I can't face food first thing in the morning), protein powder in smoothies and sauces, and eating something every 1 -2 hours until 8pm. I grab cheese, 1/2 a high protein shake, some smoothie (I make them by the pitcher), part of a Lara Bar, a piece of fruit…
To manage the side effects of the meds, I take all 3 at bedtime, at least 2 hours after last food and my other evening meds, with just a sip of water. I tried taking one in the morning as recommended, but it made me so sick there is no way I could stay on the regimen, so this is my compromise.

REPLY

My treatment was three antibiotics three days a week (Mon, Wed and Fri). Took azithromycin and ethambutol with breakfast; took rifampin an hour before lunch. I had probiotics everyday. I lost ~10 pounds during one year treatment. The treatment was not pleasant, however, it was manageable. Yogurt is a good snack.

REPLY
@sueinmn

First, if you are coughing, can you ask them to try a sputum culture from your cough first? Or at least explain why they want a biopsy instead?
As for the 3 antibiotics, I won't say it's easy, but it can be done. Yes! to the probiotics – I take them every other day.
My biggest problems have been weight loss with lack of appetite and fatigue. If you watch the NJH video on food and nutrition, she gives good tips. Three of my strategies are Carnation Instant Breakfast in my morning coffee (I can't face food first thing in the morning), protein powder in smoothies and sauces, and eating something every 1 -2 hours until 8pm. I grab cheese, 1/2 a high protein shake, some smoothie (I make them by the pitcher), part of a Lara Bar, a piece of fruit…
To manage the side effects of the meds, I take all 3 at bedtime, at least 2 hours after last food and my other evening meds, with just a sip of water. I tried taking one in the morning as recommended, but it made me so sick there is no way I could stay on the regimen, so this is my compromise.

Jump to this post

@sueinmn I have no symptoms. They found what they originally thought was pneumonia because I had a chest CT. So I am not coughing, except a tiny bit because of post nasal drip. When they did a follow up CT 6 weeks later one area was a tiny bit worse. Because some other doctor gave me that news and didn’t want to say much I had my doctor call me, I thought I needed to do something right away. Like take another round of antibiotics. It was on the phone that she briefly told me about what she called and what the CT report said, MAI. And she suggested a biopsy this week. I have an appt with my doctor not long after the biopsy which I expect she will discuss in more detail what I have. Although I do not think she will have biopsy results that quick! So it’s been 4 days since I got this news. Thank you for telling me how you are handling it.

REPLY
@catalin

My treatment was three antibiotics three days a week (Mon, Wed and Fri). Took azithromycin and ethambutol with breakfast; took rifampin an hour before lunch. I had probiotics everyday. I lost ~10 pounds during one year treatment. The treatment was not pleasant, however, it was manageable. Yogurt is a good snack.

Jump to this post

@catalin I am afraid to ask BUT……what are the side effects that make you say the treatment is not pleasant. I think I remember not wanting to take Rafampin when I was under Lyme care….we did another drug instead. Don’t have that option with this I know.

REPLY
@sylvermoon8

@sueinmn I have no symptoms. They found what they originally thought was pneumonia because I had a chest CT. So I am not coughing, except a tiny bit because of post nasal drip. When they did a follow up CT 6 weeks later one area was a tiny bit worse. Because some other doctor gave me that news and didn’t want to say much I had my doctor call me, I thought I needed to do something right away. Like take another round of antibiotics. It was on the phone that she briefly told me about what she called and what the CT report said, MAI. And she suggested a biopsy this week. I have an appt with my doctor not long after the biopsy which I expect she will discuss in more detail what I have. Although I do not think she will have biopsy results that quick! So it’s been 4 days since I got this news. Thank you for telling me how you are handling it.

Jump to this post

I'm VERY curious about what you hear. MAI cannot be diagnosed by CT as far as I am aware, but someone else may know something I do not. NTM/MAC/MAI is a very slow-growing bacteria related to TB, and is diagnosed through a culture grown out in a specialized lab. The process takes at least 6 weeks, and for proper treatment is followed by exposing the bugs to various combinations of antibiotics to see what will treat your strain. The sample may be procured via a cough, or a bronchoscopy. There are other bugs that can cause the pneumonia as well. I was treated for pseudomonas pneumonia after cultures were taken (that culture only takes 2-3 weeks, and usually a shorter course of treatment – mine was 2 months with Levaquin, then inhaled Tobramycin). Then the second set of cultures came back confirming MAC and I have been on that treatment over a year, first 3 times weekly, now daily. My husband, who also has bronchiectasis, had neither pseudomonas nor MAC, but yet another bacterial pneumonia (I don't remember specifically) and was treated with 4 courses antibiotics (2 different ones at different times.)

REPLY

Ugh- belly pain, nausea, fatigue, loss of appetite, weight loss, intermittent diarrhea. All are manageable, and preferable in my mind to the infection advancing and further compromising and/or destroying my lungs. And when I was sickest last year, I coughed almost non-stop, was so tired I could barely move, and was afraid to be around my grandchildren, who were both preemies and as a result do not have very robust immune systems. I was also afraid to be around my several immuno-compromised friends and family members. While MAC is not contagious for most people, my ID doc says it can be devastating to those with underlying conditions.

REPLY

I was worried about having MAC and saw a pulmonologist, but I didn't have it. I was having repeating lung infections about every other month and had excess phlegm that kept building up until it turned into an infection. When I had prior surgery, I was asked to put Mupiroicin (Bactroban) antibiotic ointment in my nose for a couple weeks as a precaution against staff infections, and I had tried this for the lung infections and it worked. My doctors gave me prescriptions for the ointment and I used it every time this happened. I have asthma and allergies and none of my treatments were controlling the phlegm. I read some literature that said that women are more prone to asthma because of estrogen that causes fluid accumulation in the body, and that after menopause, asthma improved. I am on bio-identical hormone replacement, and asked my doctor about this and he said this could be the cause of my issues with excess phlegm in my lungs. It was not just my lungs, but body wide fluid accumulation. I've been on hormone replacement for a while and as a test, stopped it completely for a month and the excess phlegm cleared up and I was breathing better again. My doctor has lowered my estrogen dose and it seems to have taken care of the issue. Often I just take half the dose. I'm mentioning this for anyone else because the excess phlegm sets up a good place for germs to grow, and my doctors missed this connection until I asked about it. If you are a woman who already has a lung infection, this could just add to the problems.

REPLY
@sueinmn

I'm VERY curious about what you hear. MAI cannot be diagnosed by CT as far as I am aware, but someone else may know something I do not. NTM/MAC/MAI is a very slow-growing bacteria related to TB, and is diagnosed through a culture grown out in a specialized lab. The process takes at least 6 weeks, and for proper treatment is followed by exposing the bugs to various combinations of antibiotics to see what will treat your strain. The sample may be procured via a cough, or a bronchoscopy. There are other bugs that can cause the pneumonia as well. I was treated for pseudomonas pneumonia after cultures were taken (that culture only takes 2-3 weeks, and usually a shorter course of treatment – mine was 2 months with Levaquin, then inhaled Tobramycin). Then the second set of cultures came back confirming MAC and I have been on that treatment over a year, first 3 times weekly, now daily. My husband, who also has bronchiectasis, had neither pseudomonas nor MAC, but yet another bacterial pneumonia (I don't remember specifically) and was treated with 4 courses antibiotics (2 different ones at different times.)

Jump to this post

@sueinmn I was told by a cardiologist friend of the family that MAI has a very specific look on a CT, however a formal diagnosis can not be made via the CT. But I will ask about that.

REPLY
@jenniferhunter

I was worried about having MAC and saw a pulmonologist, but I didn't have it. I was having repeating lung infections about every other month and had excess phlegm that kept building up until it turned into an infection. When I had prior surgery, I was asked to put Mupiroicin (Bactroban) antibiotic ointment in my nose for a couple weeks as a precaution against staff infections, and I had tried this for the lung infections and it worked. My doctors gave me prescriptions for the ointment and I used it every time this happened. I have asthma and allergies and none of my treatments were controlling the phlegm. I read some literature that said that women are more prone to asthma because of estrogen that causes fluid accumulation in the body, and that after menopause, asthma improved. I am on bio-identical hormone replacement, and asked my doctor about this and he said this could be the cause of my issues with excess phlegm in my lungs. It was not just my lungs, but body wide fluid accumulation. I've been on hormone replacement for a while and as a test, stopped it completely for a month and the excess phlegm cleared up and I was breathing better again. My doctor has lowered my estrogen dose and it seems to have taken care of the issue. Often I just take half the dose. I'm mentioning this for anyone else because the excess phlegm sets up a good place for germs to grow, and my doctors missed this connection until I asked about it. If you are a woman who already has a lung infection, this could just add to the problems.

Jump to this post

Jenniferhunter. Thank you for this info. I am taking hormone replacement as well and never made a connection between that and excess fluid or mucus. This is yet another reason for me to slowly wean off that medication.

Liked by Jennifer Hunter

REPLY
@sounder27

Jenniferhunter. Thank you for this info. I am taking hormone replacement as well and never made a connection between that and excess fluid or mucus. This is yet another reason for me to slowly wean off that medication.

Jump to this post

@sounder27 You are welcome. I had this problem of re-occurring lung infections for a couple years and told my functional medicine doctor about this many times. We had retested all my allergies for my injections and he had prescribed generic Singulair in addition to an inhaler. Since he is the one testing me and prescribing the compounded hormones, he should have figured this out. He had started lowering my dose a while ago, but it was still too high. It's been long enough, that going without hormones isn't bad. It's the changing levels that cause hot flashes and I'm probably more stable now on my own without them. I'm still going to take some and the female brain has estrogen receptors, so it helps with mental sharpness. I plan on relaying this information about hormones to my pulmonologist, but I was waiting for a period of time to see if the cycle is broken, and I think it is.

REPLY
Please login or register to post a reply.