New Diagnosis of MAC/MAI & I'm scared

Posted by sueinoregon @sueinoregon, Sep 10, 2018

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics….or not….since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

@laura34

Hi I am curious if anyone has ocular infection from the NTM MAC? I woke up today with eye pain and a red ring under my iris. It hurt enough to go to optometrist. She seems to think it’s from the infection. I was concerned it was from a side effect of the medication Ethambutol. It’s my right eye. Not itchy or runny just very painful and the red ring like where your iris meets the white part of eye. Has anyone else experienced this? I’m on steroids topical drops for now. I guess still take the Ethambutol for now too. Thanks
Laura

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@laura34 Hi Laura. I do not know much about mac in the eye. I only know that it can happen, albeit rare. I hope that it is not that. Please keep me posted, ok?

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@laura34…since Ethambutal can cause blindness, you need to see an opthamologist right away.Infectious disease doctor should refer you, if not, the doctor prescribing Ethambutol should. One of four patients taking it have problems. Good luck.

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@laura34

Hi I am curious if anyone has ocular infection from the NTM MAC? I woke up today with eye pain and a red ring under my iris. It hurt enough to go to optometrist. She seems to think it’s from the infection. I was concerned it was from a side effect of the medication Ethambutol. It’s my right eye. Not itchy or runny just very painful and the red ring like where your iris meets the white part of eye. Has anyone else experienced this? I’m on steroids topical drops for now. I guess still take the Ethambutol for now too. Thanks
Laura

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Hi I have pain on my left eye and sometimes I see badly I don't know if I will wait until a visit my doctor infec. At the end the march
Or I will go to emergency I will see what happing for next day.
I have Mac and I take 2 antibiotics, Azithromycine 250 mg per day and Etibi 900mg per day since mi oct I stop to take Rofact 600mg per day but cause problem with the liver…I waiting for a other antibiotic replace this.
Sorry for my writing I'm French Canadian….

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@lisesoleil

Hi I have pain on my left eye and sometimes I see badly I don't know if I will wait until a visit my doctor infec. At the end the march
Or I will go to emergency I will see what happing for next day.
I have Mac and I take 2 antibiotics, Azithromycine 250 mg per day and Etibi 900mg per day since mi oct I stop to take Rofact 600mg per day but cause problem with the liver…I waiting for a other antibiotic replace this.
Sorry for my writing I'm French Canadian….

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hi Laura….I'm from Toronto…I had some infection in one eye from Ethambutol, and saw my Opthamologist immediately..turned out it wasn't the drugs…can u not bookam emerge appt with your pulmonary dr or at least talk to them on the phone…mine told me to stop drugs immediately till they knew what was going on. C

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Tdrell…I have a follow up with eye doctor Tuesday morning. I will ask for an eye culture. She is convinced it’s an infection from the MAC. The red ring formation around the iris is textbook sign similar to Ocular TB infection. The steroids helped with pain and redness but I’m left with a strange white spot where the red ring was and a little pain left. She said to continue with ethambutol as she is pretty sure it’s not from the drug. Pulmonologist said to stop the Ethambutol but said the eye doctor would know more if I decide to continue with the medication. Frustrating…this whole experience seems to be a roller coaster ride of ups and downs.

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Laura34…perhaps soon to have eye dr call a NTM Center of excellence such as at Mayo or National Jewish health and ask an NTM specialist how to rule out or in If the bacterium is in the eye….meanwhile is it responding to the eye meds? Tdrell

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Laura34….is your vision affected. I recall at a patient workshop at NJH discussing treatment side effects….It was said that check vision daily by reading stock market quotes in Business section….to check for changes. Tdrell

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@laura34

Tdrell…I have a follow up with eye doctor Tuesday morning. I will ask for an eye culture. She is convinced it’s an infection from the MAC. The red ring formation around the iris is textbook sign similar to Ocular TB infection. The steroids helped with pain and redness but I’m left with a strange white spot where the red ring was and a little pain left. She said to continue with ethambutol as she is pretty sure it’s not from the drug. Pulmonologist said to stop the Ethambutol but said the eye doctor would know more if I decide to continue with the medication. Frustrating…this whole experience seems to be a roller coaster ride of ups and downs.

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@laura34, Hi Laura. I looked up Ocular TB infection on various ligit sites. Wow, it is so rare that only 1%-2% of the population get this. How in the world did you get so lucky? I am curious, did you do much in the way of world travel in your life? From what I have read, it is not typically in the United States. I am so sorry that you are experiencing this. Please keep me posted on how you are feeling and dealing with this.

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I was diagnosed with MAC (or NTM) and started on medication in mid-February. I have been sick since the spring of 2018 (started with antibiotic resistant pneumonia, which took nearly 3 months to clear up) and it took some time to get a diagnosis because I was previously healthy and had no history of lung infections/issues. I am looking for other people who have had MAC to share their experience as this is such a debilitating illness and equally challenging treatment!
Have lots of questions – Wondering how long it takes to feel better? Sometimes I feel like I feel worse on the medications (azythromycin, rifampin and ethambutol on monday, wednesday and Friday). Does anyone have experience taking supplements with the medications and/or is there anything I can do to help the medications work and to feel better?
Any comments/replies would be much appreciated!

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Hi @kathyhg and welcome to Connect. You may have noticed I moved your post to this existing new with MAC discussion so that you can connect with other who have similar experiences and can learn how they have dealt with the disease. Simply click VIEW & REPLY to get to your message.

I'd like to introduce you to @windwalker @tdrell and @megan123 as they all have experience with MAC and they may be able to offer you support.

I also wanted to share the following discussions as they may be of help.

MAC Pulmonary disease/Bronchiectasis – https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

The Big 3 for MAC – https://connect.mayoclinic.org/discussion/the-big-3-antibiotics-for-mac/

Are you experiencing any side effects form the medications at this time?

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@ethanmcconkey

Hi @kathyhg and welcome to Connect. You may have noticed I moved your post to this existing new with MAC discussion so that you can connect with other who have similar experiences and can learn how they have dealt with the disease. Simply click VIEW & REPLY to get to your message.

I'd like to introduce you to @windwalker @tdrell and @megan123 as they all have experience with MAC and they may be able to offer you support.

I also wanted to share the following discussions as they may be of help.

MAC Pulmonary disease/Bronchiectasis – https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

The Big 3 for MAC – https://connect.mayoclinic.org/discussion/the-big-3-antibiotics-for-mac/

Are you experiencing any side effects form the medications at this time?

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Thanks for your assistance. I have no side effects so far. I am followed by an ocular clinic and had no damage to my eyes as of my first appointment (one month after starting the medications). Also monthly bloodwork, EKG and will talk to my doctor about hearing tests as I understand that hearing can also be affected.

Like sueinoregon, I am terrified of taking these medications and have been reminded by a few people that I am putting poison into my body by taking them – not very helpful. I'm also terrified of not taking them and risking permanent lung damage – my doctor said I could wait until I had cavitation in my lungs, which isn't anything to take lightly either. So I opted for the medications.

I appreciate being able to connect with other people with mac as it is a very isolating illness between the exhaustion and intermittent nausea (which I thought would get better on the meds). Also, I have begun to see so many things in my environment as sources of infection.

I see a respirologist who diagnosed the mac and started me on the meds. There is a specialist in a city near mine so I will ask for a consult but have read it is not a good idea to stop taking the medications once you've started – unless you have bad side effects (eg. eyes or liver function). My respirologist said he'd refer me anyway if I had any complications.

Anyway, forgive my rambling but it is overwhelming at times. I expect that I will adjust to this new reality in time.

Thanks for your assistance,

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@windwalker

@laura34, Hi Laura. I looked up Ocular TB infection on various ligit sites. Wow, it is so rare that only 1%-2% of the population get this. How in the world did you get so lucky? I am curious, did you do much in the way of world travel in your life? From what I have read, it is not typically in the United States. I am so sorry that you are experiencing this. Please keep me posted on how you are feeling and dealing with this.

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Terri, I am in the military and have done multiple Iraq and Afghanistan deployments. I should have more info Tuesday morning after follow up with eye doctor. My eye doctor said she has only read of it and never actually seen it in person before. I’ll keep you updated.

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@laura34

Terri, I am in the military and have done multiple Iraq and Afghanistan deployments. I should have more info Tuesday morning after follow up with eye doctor. My eye doctor said she has only read of it and never actually seen it in person before. I’ll keep you updated.

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Laura34….for sure don’t let military( I assume) eye Dr minimize your eye situation…..insist on additional imput…..who knows what exotic organisms you may have been splashed with …and into eyes…in the areas you were in….please let us know how Tuesday goes….please be assertive NO MATTER what your rank or normal is….tdrell

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@kathyhg

Thanks for your assistance. I have no side effects so far. I am followed by an ocular clinic and had no damage to my eyes as of my first appointment (one month after starting the medications). Also monthly bloodwork, EKG and will talk to my doctor about hearing tests as I understand that hearing can also be affected.

Like sueinoregon, I am terrified of taking these medications and have been reminded by a few people that I am putting poison into my body by taking them – not very helpful. I'm also terrified of not taking them and risking permanent lung damage – my doctor said I could wait until I had cavitation in my lungs, which isn't anything to take lightly either. So I opted for the medications.

I appreciate being able to connect with other people with mac as it is a very isolating illness between the exhaustion and intermittent nausea (which I thought would get better on the meds). Also, I have begun to see so many things in my environment as sources of infection.

I see a respirologist who diagnosed the mac and started me on the meds. There is a specialist in a city near mine so I will ask for a consult but have read it is not a good idea to stop taking the medications once you've started – unless you have bad side effects (eg. eyes or liver function). My respirologist said he'd refer me anyway if I had any complications.

Anyway, forgive my rambling but it is overwhelming at times. I expect that I will adjust to this new reality in time.

Thanks for your assistance,

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@kathyhg, Hi there. Welcome to our group. The warnings that come with these 'Big 3' antibiotics are scary, which is why I declined them years ago. I declined them because I feared for my liver. I was worried because I liked to drink 2 cocktails every evening. mainly because I felt so bad from the constant, violent coughing. My whole torso hurt from that. Plus, I was trying to escape other stressors in my life as well, and felt that my body was too fragile to take the meds. I was worried that the alcohol plus the meds would kill my liver. I have asked my current dr about the toxicity of those meds, he said they really aren't that hard on your body; just have to stay on top of the vision and hearing changes if any. He believes some people are being overly medicated with these drugs too, so that adds to the confusion. It is all very frustrating that there is no clear definition as to HOW & WHEN to treat this disease. I was diagnosed in 2005 with mac, and did not ever go on the big three. I am not certain that was a good choice as I have watched my lung function go steadily downward year after year. Finally, I sought treatment at Mayo Clinic in 2013 and my dr was able to slow the progression of losing lung function at the rate I was. If you saw my chart graph from my lung function test, it shows that I am almost dead. Mayo was so worried at how low it was; that they did pre-qualifying tests for a double lung transplant. Although I do not feel very ill, or act it; my dr says I am an anomaly. A real head scratcher. According to my lung function, I should not be doing so well. It is all about attitude. I just decided one day that I was not going to be sick any longer. Yes, I have crappy lungs, but I now can walk as long as I want, ride my bike as long as I want, and I live my life in happiness. There was a time when I couldn't do any of that. I cannot advise you on whether to take the Big 3 treatment or not. Treatment should be customized for each individual. You can click on my picture icon to see how Mayo treated me without the Big 3.

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@windwalker

@kathyhg, Hi there. Welcome to our group. The warnings that come with these 'Big 3' antibiotics are scary, which is why I declined them years ago. I declined them because I feared for my liver. I was worried because I liked to drink 2 cocktails every evening. mainly because I felt so bad from the constant, violent coughing. My whole torso hurt from that. Plus, I was trying to escape other stressors in my life as well, and felt that my body was too fragile to take the meds. I was worried that the alcohol plus the meds would kill my liver. I have asked my current dr about the toxicity of those meds, he said they really aren't that hard on your body; just have to stay on top of the vision and hearing changes if any. He believes some people are being overly medicated with these drugs too, so that adds to the confusion. It is all very frustrating that there is no clear definition as to HOW & WHEN to treat this disease. I was diagnosed in 2005 with mac, and did not ever go on the big three. I am not certain that was a good choice as I have watched my lung function go steadily downward year after year. Finally, I sought treatment at Mayo Clinic in 2013 and my dr was able to slow the progression of losing lung function at the rate I was. If you saw my chart graph from my lung function test, it shows that I am almost dead. Mayo was so worried at how low it was; that they did pre-qualifying tests for a double lung transplant. Although I do not feel very ill, or act it; my dr says I am an anomaly. A real head scratcher. According to my lung function, I should not be doing so well. It is all about attitude. I just decided one day that I was not going to be sick any longer. Yes, I have crappy lungs, but I now can walk as long as I want, ride my bike as long as I want, and I live my life in happiness. There was a time when I couldn't do any of that. I cannot advise you on whether to take the Big 3 treatment or not. Treatment should be customized for each individual. You can click on my picture icon to see how Mayo treated me without the Big 3.

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@windwalker Terri, you're amazing. Thank you for being our mentor on this site. We're very lucky to have you. (along with the other "older" members, and by that I don't mean age, who have done great research) And I agree, attitude is a big part of dealing with this disease.

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