1. < MAC & Bronchiectasis

Just started a week ago the big three and feel so very sick

Posted by justaussie @justaussie, Sep 27 1:54pm

Hi everyone, I finally started the meds. Terrified for the side effects and to be honest feel completely depressed and sad. I feel so very sick. I've started taking the meds at night before bed as can't tolerate how sick I feel during the day. The next morning feel marginally better but have this vile sick taste in my mouth all day like I want to vomit. I started a probiotic yesterday hoping it will help. I don't know how I'm going to tolerate this long term. I have mild/moderate Mac at present - but have a 4.5cm (or possibly bigger now since ct scan in June) and quite frankly my symptoms were far easier to cope with than these meds. Can anyone tell me what they are taking/using to help alleviate the sick feeling? I really don't think I can take these long time feeling like this. With no quality of life - what's the point. Sadly I'm 59 and would like to be around for awhile but not if life is miserable. Feeling devastated.

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busybeans | @busybeans | Sep 30 3:31pm

Interestingly enough, I didn't have any cavities when first diagnosed. The diagnosis was a result of misdiagnosis of several bouts of pneumonia. My PCP finally referred me to a pulmonologist who then sent me to NJH. So I was relatively healthy then. It's only been within the past four years that cavities have developed. I had to pull out my NJH reports to see how big they are...and they aren't large at all. Two at this point...4 mm and 7mm. What I DO have are large nodules of mycobacterium...and portions of my airways that are so widened that some have collapsed. But my O2 is still good - 94 - 97 - so I don't have to use oxygen. I doubt this is very helpful, but one can only hope that by sharing it might shed a light for someone else.

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1 reply
justaussie | @justaussie | Oct 3 11:43am
In reply to @busybeans "Interestingly enough, I didn't have any cavities when first diagnosed. The diagnosis was a result of..." + (show)
@busybeans

Interestingly enough, I didn't have any cavities when first diagnosed. The diagnosis was a result of misdiagnosis of several bouts of pneumonia. My PCP finally referred me to a pulmonologist who then sent me to NJH. So I was relatively healthy then. It's only been within the past four years that cavities have developed. I had to pull out my NJH reports to see how big they are...and they aren't large at all. Two at this point...4 mm and 7mm. What I DO have are large nodules of mycobacterium...and portions of my airways that are so widened that some have collapsed. But my O2 is still good - 94 - 97 - so I don't have to use oxygen. I doubt this is very helpful, but one can only hope that by sharing it might shed a light for someone else.

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Thank you for sharing. Ah - 4mm and 7mm small in comparison to mine so I'm glad for you that they aren't bigger. Sadly mine was 4.5cm in June - it may well have gotten bigger. Will have another ct scan in late December and see what if anything has changed. I have a few nodules too in the 4 to 9mm range. Best of luck to you. Hoping your cavities stay small and that you feel as well as possible.

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busybeans | @busybeans | Oct 3 1:31pm

I'm sorry to hear this...I know it's all so scary with so many uncertainties. And the time between CTs can be a little bit agonizing as we wait to find out if we're stable or if the disease is progressing. I'm praying yours will be stable as mine were for so many years. I've just come from a six month CT. My constant prayer is that the results say that the NTM continues to "wax and wane," and that the cavities and bronchiectasis are stable. Based on the past few months of symptoms, I'm thinking things have gone south a bit. All I can do is my breathing treatments (very sporadically due to the sore throat I always get afterward), exercise (I'm pretty good at this one), try to eat well (which I'm not great about), and pray (constantly).

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laborday24 | @laborday24 | Oct 4 6:34pm
In reply to @busybeans "I'm sorry to hear this...I know it's all so scary with so many uncertainties. And the..." + (show)
@busybeans

I'm sorry to hear this...I know it's all so scary with so many uncertainties. And the time between CTs can be a little bit agonizing as we wait to find out if we're stable or if the disease is progressing. I'm praying yours will be stable as mine were for so many years. I've just come from a six month CT. My constant prayer is that the results say that the NTM continues to "wax and wane," and that the cavities and bronchiectasis are stable. Based on the past few months of symptoms, I'm thinking things have gone south a bit. All I can do is my breathing treatments (very sporadically due to the sore throat I always get afterward), exercise (I'm pretty good at this one), try to eat well (which I'm not great about), and pray (constantly).

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I just found out from my sputum test that my Mac is worse I go to njh in November. My girl there says not to worry but hard not to. Has anyone Mac got worse. This is since june

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2 replies
lilianna | @lilianna | Oct 5 12:40pm
In reply to @laborday24 "I just found out from my sputum test that my Mac is worse I go to..." + (show)
@laborday24

I just found out from my sputum test that my Mac is worse I go to njh in November. My girl there says not to worry but hard not to. Has anyone Mac got worse. This is since june

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Laborday24, please have trust that NJH doctors give you a way how to proceed and how to deal with the changes. Who is your doctor there? November is close and in the meantime do what you can with airway clearing.

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1 reply
laborday24 | @laborday24 | Oct 5 1:26pm
In reply to @lilianna "Laborday24, please have trust that NJH doctors give you a way how to proceed and how..." + (show)
@lilianna

Laborday24, please have trust that NJH doctors give you a way how to proceed and how to deal with the changes. Who is your doctor there? November is close and in the meantime do what you can with airway clearing.

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Thanks but so discouraging. I went off meds in June after two years because we thought one was giving me headaches. Now I am second guessing myself about going off meds. I was drug resistant to one of them. My contact at njh is encouraging. I so appreciate you responding. Did you go there

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lilianna | @lilianna | Oct 5 2:53pm

I went there in January 2024, then in April and going at the end of this month. When you visit you use the NJH discount for enterprise rent a car and a hotel which really helps. My doctor there is dr. Griffith. Update me how your visit goes in November. I hope for you you will find help there. My best

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1 reply
laborday24 | @laborday24 | Oct 5 5:02pm
In reply to @lilianna "I went there in January 2024, then in April and going at the end of this..." + (show)
@lilianna

I went there in January 2024, then in April and going at the end of this month. When you visit you use the NJH discount for enterprise rent a car and a hotel which really helps. My doctor there is dr. Griffith. Update me how your visit goes in November. I hope for you you will find help there. My best

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We are going to use Lyft. We are staying at an extended stay just 7 miles away. Thanks for the info. Where are you from. I hope I don’t need to go back more than once

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1 reply
lilianna | @lilianna | Oct 5 5:34pm
In reply to @laborday24 "We are going to use Lyft. We are staying at an extended stay just 7 miles..." + (show)
@laborday24

We are going to use Lyft. We are staying at an extended stay just 7 miles away. Thanks for the info. Where are you from. I hope I don’t need to go back more than once

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I am from the Chicago area. When I use NJH discount at enterprise I take a small car and it’s 30$ a day plus taxes. It’s a good deal.

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1 reply
laborday24 | @laborday24 | Oct 5 5:55pm
In reply to @lilianna "I am from the Chicago area. When I use NJH discount at enterprise I take a..." + (show)
@lilianna

I am from the Chicago area. When I use NJH discount at enterprise I take a small car and it’s 30$ a day plus taxes. It’s a good deal.

Jump to this post

Wow. That is good. How many days did you stay

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