So many questions: How do I clean our home to prevent reinfection?

Posted by sharingiscaring1 @sharingiscaring1, Jan 12 1:27pm

My husband was diagnosed with MAC in October. He was on IV amikacin, oral linezolid, ciprofloxacin and azithromycin. He now only takes the oral ciprofloxacin and azithromycin. He also wears the compression vest and does a saline nebulizer. He is tired all of the time, it is hard for him to stay awake. I miss him so much and am so scared. How do I clean our home to prevent reinfection? I have so many questions and don’t know what to do.

Welcome to the group. MAC can be scary, but if you read some of the posts here, you will find we all learn to cope in our own way. The tiredness is certainly one of the issues many of us deal with. Both the infection, especially at its worst, and the antibiotic therapy contribute to the profound fatigue. After 18 months of drug therapy, I am off the meds and symptom-free, even though I still have MAC in my sputum. I am finally beginning to regain a bit of energy. I found that I was able to stay awake better while on the meds if I walked EVERY DAY no matter how tired I was, and got up and moved if I was drowsy to the point of falling asleep. I also found that I had better night sleep if I could mainly stay awake during the day, and limited myself to one or two timed naps while lying down in bed – not just "resting" and falling asleep in my recliner, which did little to relieve the tiredness.
MAC is everywhere. As far as I know, there is no way to clean your environment to prevent reinfection. What you need to do is minimize exposure – avoid places where MAC hides like hot tubs, steamy bathrooms, and dry garden soil – especially peat moss.
For myself, I minimize exposure to those places, use a fitted face mask rated N95 if I am out in windy, dusty conditions or working closely with soil, wear garden gloves, launder clothes when I come in from the yard. I pay someone to do the yard work that involves raising dust, and stay away with house closed up while he does it. In the house, I take short showers or warm baths, get out of the bathroom to dress while the fan clears the moisture. I wash soak & wash nebulizer parts, dishes, glassware, pitchers in HOT soapy water, scrub and rinse then air dry.
I have made the personal decision to live cautiously but fully, so I do not avoid travel, have not stopped seeing people, etc. I just try to be careful, avoid sick people, and stay as healthy as possible. I also eat as healthy a diet as I can, and use a probiotic to minimize the effect of the antibiotics on my gut health.
What other health issues might be facing your husband? How did they arrive at the diagnosis? Is he seeing a pulmonologist or infectious disease specialist who regularly treats MAC?
Sue

REPLY

Thank you so much for your quick reply and your comforting words. Andy has always been pretty healthy and did not have any other conditions or take any medications until now. He has always had sinus issues with drainage and a clearing cough, but nothing that really stood out or disrupted his life.
He began to lose weight, tire more easily and cough more. He was on the cusp of being anemic. His doctor ordered tests and a bronchoscopy to check for lung cancer. There was no cancer but there was MAC in his left lung. His pulmonologist is Dr. Dragos Zanchi. He put Andy on the nebulizer(7% sodium chloride) and the compression vest and sent us to Dr. Emilio Jose Vasques at Brandon/Tampa Infectious Disease. Andy received 2 months of IV amikacin, oral linezolid, ciprofloxacin and azithromycin. Thursday was his last dose of amikacin and linezolid. There was one other person at the same IV time as Andy that also was being treated for MAC. We weren't given much information. We actually thought that everything would be fine once he finished his rounds of antibiotics. And then I got on the computer.
Andy is fortunate that he has not lost his appetite. It is a relief to fill him with healthy, nutritious foods. He has lost some of his hearing, which I am told is permanent. His thighs hurt and he is so tired that it has been making any yoga or walking difficult. He is trying though. I am trying to tweak his med times so that maybe he is actually in bed asleep through at least one of the roughest patches.
Do you do anything special for brushing your teeth? Do you use a dishwasher, would that be safe?

REPLY
@sharingiscaring1

Thank you so much for your quick reply and your comforting words. Andy has always been pretty healthy and did not have any other conditions or take any medications until now. He has always had sinus issues with drainage and a clearing cough, but nothing that really stood out or disrupted his life.
He began to lose weight, tire more easily and cough more. He was on the cusp of being anemic. His doctor ordered tests and a bronchoscopy to check for lung cancer. There was no cancer but there was MAC in his left lung. His pulmonologist is Dr. Dragos Zanchi. He put Andy on the nebulizer(7% sodium chloride) and the compression vest and sent us to Dr. Emilio Jose Vasques at Brandon/Tampa Infectious Disease. Andy received 2 months of IV amikacin, oral linezolid, ciprofloxacin and azithromycin. Thursday was his last dose of amikacin and linezolid. There was one other person at the same IV time as Andy that also was being treated for MAC. We weren't given much information. We actually thought that everything would be fine once he finished his rounds of antibiotics. And then I got on the computer.
Andy is fortunate that he has not lost his appetite. It is a relief to fill him with healthy, nutritious foods. He has lost some of his hearing, which I am told is permanent. His thighs hurt and he is so tired that it has been making any yoga or walking difficult. He is trying though. I am trying to tweak his med times so that maybe he is actually in bed asleep through at least one of the roughest patches.
Do you do anything special for brushing your teeth? Do you use a dishwasher, would that be safe?

Jump to this post

Glad to hear he has his appetite. Have the doctors indicated whether he has bronchiectasis with the MAC, or given you any idea how much longer he will be on meds? Do you know if the doctors submitted a sputum culture to determine which drugs were effective for his particular strain of mycobacterium? Most protocols call for the oral antibiotics for a year with periodic sputum tests to see if the infection is gone. I would also be sure his doctors know about the leg pain – I had a similar reaction years ago which indicated I was overly sensitive to a specific med (this was unrelated to my MAC) and they had to use something else.
I do not worry about drinking water, brushing teeth, etc. Absent swallowing or aspiration problems, MAC doesn't cause issues through the stomach, where digestive acids destroy it.
I use the dishwasher – mine superheats the water enough to kill MAC. I never heard anyone recommend against it.
You are right to try adjusting med timing to minimize symptoms. I took azithromycin, rifampin and ethambutol (known on here as the Big 3) for 18 months. Ideally it would have been one med at night and two in the morning but I would never have finished the regimen because I was so miserable. With my doctors' blessing, I took all three at night, just before bedtime, and managed to mostly sleep through the nausea and stomach pain.
There is a lot of really good information available through National Jewish Health, I will give you a link tomorrow because I cannot find it just now.
Keep hanging in there. As far as I have heard Amikacin is a very tough med, so now things may begin to improve.
Sue

REPLY
@sharingiscaring1

Thank you so much for your quick reply and your comforting words. Andy has always been pretty healthy and did not have any other conditions or take any medications until now. He has always had sinus issues with drainage and a clearing cough, but nothing that really stood out or disrupted his life.
He began to lose weight, tire more easily and cough more. He was on the cusp of being anemic. His doctor ordered tests and a bronchoscopy to check for lung cancer. There was no cancer but there was MAC in his left lung. His pulmonologist is Dr. Dragos Zanchi. He put Andy on the nebulizer(7% sodium chloride) and the compression vest and sent us to Dr. Emilio Jose Vasques at Brandon/Tampa Infectious Disease. Andy received 2 months of IV amikacin, oral linezolid, ciprofloxacin and azithromycin. Thursday was his last dose of amikacin and linezolid. There was one other person at the same IV time as Andy that also was being treated for MAC. We weren't given much information. We actually thought that everything would be fine once he finished his rounds of antibiotics. And then I got on the computer.
Andy is fortunate that he has not lost his appetite. It is a relief to fill him with healthy, nutritious foods. He has lost some of his hearing, which I am told is permanent. His thighs hurt and he is so tired that it has been making any yoga or walking difficult. He is trying though. I am trying to tweak his med times so that maybe he is actually in bed asleep through at least one of the roughest patches.
Do you do anything special for brushing your teeth? Do you use a dishwasher, would that be safe?

Jump to this post

@sharingiscaring I, too, have lost some hearing. Hoping to get hearing aids soon. It's a tough disease, you have to work at feeling better. Good tips on this forum. Wishing you well.

REPLY

Hi and thank you for listening, helping and encouraging me. I am in shock yet again and feeling at a loss. I can't stop praying. I went through all of my husband's paperwork today to answer Sue's questions and realized that even though the doctor was saying MAC, the paperwork shows Abscessus strain with bronchiecstasis. We were ready and prepared to jump in and fight and now I feel, I don't know what I feel.
He has a blood and sputum test Thursday. He is taking and tolerating the oral Ciprofloxacin and Azithromycin, has a good appetite but tires very easily. I like our doctor but have been researching other specialists in Tampa Bay. I read many articles online today and it does seem that the protocol that Andy is on is a noted one.

REPLY
@sharingiscaring1

Hi and thank you for listening, helping and encouraging me. I am in shock yet again and feeling at a loss. I can't stop praying. I went through all of my husband's paperwork today to answer Sue's questions and realized that even though the doctor was saying MAC, the paperwork shows Abscessus strain with bronchiecstasis. We were ready and prepared to jump in and fight and now I feel, I don't know what I feel.
He has a blood and sputum test Thursday. He is taking and tolerating the oral Ciprofloxacin and Azithromycin, has a good appetite but tires very easily. I like our doctor but have been researching other specialists in Tampa Bay. I read many articles online today and it does seem that the protocol that Andy is on is a noted one.

Jump to this post

Prayer without ceasing is wonderful! Jesus is the only thing that can sustain you.

Take heart, I have m. Abscessus in my lungs and sinuses since 2015, and with airway clearance, daily Gentamicin & Pulmicort taken as an inhalants through my Navage, by God’s grace have regained the ability work full time and only have 1-2 “exacerbations” that get me down in bed for days/weeks.

REPLY

Your message is the answer to my prayers. Thank you so much for responding and helping me see that we are not alone and there is life to be lived. I will keep you in my prayers as we continue to live(and thrive) with this issue. Thank you so much, your words are just what I needed today!

REPLY

Hugs to you both!! The caretaker role is a tough one!

REPLY
Please login or register to post a reply.