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!!

@sueinmn

@jkiemen I was also changed from 3 times weekly to daily. My infectious disease doc was unhappy with changes he saw in my lung CT and wanted to get more aggressive. At first I had more gastro-intestinal issues and FATIGUE was back like before treatment. Now after about 2 months, the fatigue seems to be less, but I am still losing weight -trying to find a regimen of eating that works again. I have talked to the ID doc and he wants me to try to push through this in hopes that we can get the MAC under control. When I was switched to daily meds, the audiologist did another baseline hearing test and asked to see me every 4 months or immediately if anything changes. The opthamologist sees me every 3 months, and was adamant about keeping the schedule – she does a full visual field exam plus dilated eye exam every time (I also have mild glaucoma.) The ID doc has ordered full blood counts, EKG and liver panel every month, and I see him every 3 months.
As for the beta-blockers, I had to stop taking those a while ago because they interfered with the effectiveness of my asthma medications (which are a beta-agonist.) Hence the frequent EKG to monitor mild heart issues.

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Sueinmn. Which medications are causing you to need all the monitoring of the vision etc.? Is it the big three or Arikayce??

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What is pseudomonas infection?

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@sounder27

Catalin. Which medications are you referring to that caused the vision problems?

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It is Ethambutol.
Also if anyone is taking thyroid hormone, be careful with rifampin which could reduce its absorption.

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@sounder27

Sueinmn. Which medications are causing you to need all the monitoring of the vision etc.? Is it the big three or Arikayce??

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It is Ethambutol, one of the big three.

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@jenniferhunter

@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.

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@jenniferhunter Hi Jennifer! I think I need some estrogen to help make me sharper.

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@silvermoon8, @sandykayhud, @catalin, @marilynk Hi ladies. May I ask what you all did career wise and what state you live in? I am tracking data for research. Thank you!

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@sylvermoon8, I also have been an avid gardener for yrs. I am super careful now not to inhale soil particles, especially from potting soil. I have read that pseudomonas is commonly picked up by handling bush clippings. I now leave that up to my hubby.

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Just curious, what kind of research are you doing? I'm from NJ, a research scientist.

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@sylvermoon8

What is pseudomonas infection?

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Pseudomonas is another bug which invades compromised lungs and can cause pneumonia. May occur alone or in combination with MAC/MAI. It is (generally) easier to treat than MAC/MAI, the course of treatment is usually much shorter, and it (generally) responds to levaquin, doxycycline, and/or inhaled trobamycin. It can also reoccur, and like Terri says, is also often found in yard and garden. Just another one of those things to be aware of if you have bronchiectasis. I wear long sleeves, gloves and an N-95 mask when working in the yard to minimize exposure to both bugs. I can't leave it to my husband, because he also has bronchiectasis, has had pseudomonas (but not MAC) and has really bad allergies. Another commonly-cited source for both bugs is wood mulch (which can also harbor mold spores) so I leave the handling of that to a hired teenager, who also does some of the heavy work in our yard and a lot of the trimming and hauling of brush.

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@windwalker

@silvermoon8, @sandykayhud, @catalin, @marilynk Hi ladies. May I ask what you all did career wise and what state you live in? I am tracking data for research. Thank you!

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We traveled and were transferred often. I was raised on a farm and gathered eggs from a henhouse. After retiring we lived part time in an area with lots of bats. The rest of the time was spent in buildings that had pigeons in the attics and heat/ac systems. This was before my diagnosis. And also a few years ago. I was diagnosed at National Jewish Research Center in 03. With avian Mac I obviously swept and things became air born. I was told that bronchiectasis can be genetic and I also have a CF gene.

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@windwalker

@silvermoon8, @sandykayhud, @catalin, @marilynk Hi ladies. May I ask what you all did career wise and what state you live in? I am tracking data for research. Thank you!

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Sorry to take so long in replying. I taught kindergarten for several years. Then I owned and managed a Christian bookstore for 20+ years. I feel like I may have come in contact with my MAC through our hot tub that we used for several years.

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@sueinmn

Pseudomonas is another bug which invades compromised lungs and can cause pneumonia. May occur alone or in combination with MAC/MAI. It is (generally) easier to treat than MAC/MAI, the course of treatment is usually much shorter, and it (generally) responds to levaquin, doxycycline, and/or inhaled trobamycin. It can also reoccur, and like Terri says, is also often found in yard and garden. Just another one of those things to be aware of if you have bronchiectasis. I wear long sleeves, gloves and an N-95 mask when working in the yard to minimize exposure to both bugs. I can't leave it to my husband, because he also has bronchiectasis, has had pseudomonas (but not MAC) and has really bad allergies. Another commonly-cited source for both bugs is wood mulch (which can also harbor mold spores) so I leave the handling of that to a hired teenager, who also does some of the heavy work in our yard and a lot of the trimming and hauling of brush.

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@sueinmn….I also have psedomonas, mine being much more difficult to treat…tobi doesn’t wrk for me, but Colistin does…depending on your sensitivites as well makes a huge difference and how colonized it is…it is s very dangerous bacteria, and can be difficult to treat, as I’m experiencing…tks for the onfo

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@sandykayhud

Sorry to take so long in replying. I taught kindergarten for several years. Then I owned and managed a Christian bookstore for 20+ years. I feel like I may have come in contact with my MAC through our hot tub that we used for several years.

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@sandykayhud Many teachers have been blessed with MAC. I don’t know about you, but I worked in dirty old buildings for 43 years. I did my own cleaning. I don’t think the vents were ever cleaned! K is the best age. They tell you everything and are such sponges. I miss it! Irene5

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@sueinmn

Pseudomonas is another bug which invades compromised lungs and can cause pneumonia. May occur alone or in combination with MAC/MAI. It is (generally) easier to treat than MAC/MAI, the course of treatment is usually much shorter, and it (generally) responds to levaquin, doxycycline, and/or inhaled trobamycin. It can also reoccur, and like Terri says, is also often found in yard and garden. Just another one of those things to be aware of if you have bronchiectasis. I wear long sleeves, gloves and an N-95 mask when working in the yard to minimize exposure to both bugs. I can't leave it to my husband, because he also has bronchiectasis, has had pseudomonas (but not MAC) and has really bad allergies. Another commonly-cited source for both bugs is wood mulch (which can also harbor mold spores) so I leave the handling of that to a hired teenager, who also does some of the heavy work in our yard and a lot of the trimming and hauling of brush.

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@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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@catalin

It is Ethambutol, one of the big three.

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@catalin Yes.

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