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New Diagnosis of MAC/MAI & I'm scared
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.
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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?
@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.
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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1 Reactionhi 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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1 ReactionTdrell...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.
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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1 ReactionLaura34....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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1 Reaction@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.
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!
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?