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

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.)

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@sueinmn when I was diagnosed the CT scan said “indicative of MAC/MAI” and I was immediately sent to a pulmonologist who did a bronchoscopy, and the culture from that was sent out. It came back positive, and the rest is history. (Irene5)

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I didn't have much trouble with rifampin until the last ~2 month treatment. I had tummy cramp and diarrhea about 2 hrs after taking rifampin. About the same time I had reaction with morning antibiotics, starting to have diarrhea in the morning. My treatment was completed one year after negative sputum test.

Liked by sylvermoon8

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@irene5

@sueinmn when I was diagnosed the CT scan said “indicative of MAC/MAI” and I was immediately sent to a pulmonologist who did a bronchoscopy, and the culture from that was sent out. It came back positive, and the rest is history. (Irene5)

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@irene5 are you doing better now, I hope?

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@catalin so you are over treatment? I’m glad you are better.

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@sylvermoon8

@irene5 are you doing better now, I hope?

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@silvermoon8Thanks for asking. Unfortunately I’m not doing very well right now most likely because I have other health things that impact me. I am a very positive person and have a very supportive family. My weight (or lack there of) has been my biggest problem. I go to UMass ID for MAC treatment. They have been excellent.

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@deborahwolf

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!

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@deborahwolf it was easy.

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@sylvermoon8 The diagnosis is a blow. It is hard to know that you may have a chronic condition. I have had all the tests more than once. Generally I do not have allot of symptoms. I wear a mask in the Garden N95 type now. I am being changed from three times a week to every day (smaller daily dose of Azithromycin and Ethambutol and same dose of Rifampin. Have many of you made that change? If so how, did you notice much difference? They told me that if anyone is on any type of estrogen replacement, it could make it less effective. So for post-menopausal people like me it may make the cream less effective. They said it can also strengthen beta blockers.

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@sylvermoon8

So glad the procedure as easy for you. There is so much to absorb with this diagnosis that fear of procedures shouldn’t be added to your worries.

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@deborahwolf

So glad the procedure as easy for you. There is so much to absorb with this diagnosis that fear of procedures shouldn’t be added to your worries.

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I thank you for your help. I am calming down about this. I had a long discussion with my doctor and I have a plan. Right now it’s to wait for biopsy results. One step at a time. I think this is a great place to share information and to also support each other! And it’s really helpful to know how people have gone through the same thing you are facing. But I also know we are all different and what is good procedure or strategy for one person may not work for another. Information is valuable but in the end it’s the doctor that you trust that you listen to. I am glad I joined this group. I feel for everyone going through this, it is very tough.

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@jkiemen

@sylvermoon8 The diagnosis is a blow. It is hard to know that you may have a chronic condition. I have had all the tests more than once. Generally I do not have allot of symptoms. I wear a mask in the Garden N95 type now. I am being changed from three times a week to every day (smaller daily dose of Azithromycin and Ethambutol and same dose of Rifampin. Have many of you made that change? If so how, did you notice much difference? They told me that if anyone is on any type of estrogen replacement, it could make it less effective. So for post-menopausal people like me it may make the cream less effective. They said it can also strengthen beta blockers.

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Thought to share my experience with those who are treated with 3 antibiotics. Recently it has been confirmed that my vision loss was due to a year treatment of 3 antibiotics. The culprit was Ethambutol. My vision gets a bit improvement about two months after stopping the treatment. Good to know that the process seems reversible. During treatment I have been monitored by a ophthalmologist, the problem was discovered at ~11 month treatment. Please note that not everyone will have this problem, please discuss with your doctor about this issue.

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@catalin

Thought to share my experience with those who are treated with 3 antibiotics. Recently it has been confirmed that my vision loss was due to a year treatment of 3 antibiotics. The culprit was Ethambutol. My vision gets a bit improvement about two months after stopping the treatment. Good to know that the process seems reversible. During treatment I have been monitored by a ophthalmologist, the problem was discovered at ~11 month treatment. Please note that not everyone will have this problem, please discuss with your doctor about this issue.

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I’m sorry to hear that has happened to you. I hope it continues to improve.

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@catalin

Thought to share my experience with those who are treated with 3 antibiotics. Recently it has been confirmed that my vision loss was due to a year treatment of 3 antibiotics. The culprit was Ethambutol. My vision gets a bit improvement about two months after stopping the treatment. Good to know that the process seems reversible. During treatment I have been monitored by a ophthalmologist, the problem was discovered at ~11 month treatment. Please note that not everyone will have this problem, please discuss with your doctor about this issue.

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I’m so sorry about your loss of vision! Can you please tell us what you noticed and when? And how they confirmed it was due to your antibiotics? It is great news that it's improving now that you are off the meds!

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@jkiemen

@sylvermoon8 The diagnosis is a blow. It is hard to know that you may have a chronic condition. I have had all the tests more than once. Generally I do not have allot of symptoms. I wear a mask in the Garden N95 type now. I am being changed from three times a week to every day (smaller daily dose of Azithromycin and Ethambutol and same dose of Rifampin. Have many of you made that change? If so how, did you notice much difference? They told me that if anyone is on any type of estrogen replacement, it could make it less effective. So for post-menopausal people like me it may make the cream less effective. They said it can also strengthen beta blockers.

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@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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I had been monitored by a ophthalmologist. She found my vision field was diminishing and wrote to alert my pulmonologist. I did not feel much about it. I was so scarred and stopped the med right away. Then I was referred to see a neuro ophthalmologist. Went through MRI of head and orbit to rule out tumor growth. When I returned to see the neuro doc, he found my vision improved a bit( about 2 mo after no med). Will see him again in 6 months. He said probably the vision loss could be reversible, however, the time required might be individual dependent. Meanwhile, there is nothing can be done but just wait.

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

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