In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Aug 17, 2019

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!!

@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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@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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