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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)Comment receiving replies
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
Replies to "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..."
What do you drink instead of water/
Jo Ann
@nick52 I don't know whom your question was directed to. For myself, I never had pseudomonas.
Sorry Long I thought you had.
Distilled water from the store.
My doctor at Vanderbilt says that as physicians become more knowledgeable about this disease, they will not be hesitant to treat it.
I am doing well also. I was taking the big 3, eye doc stopped ethambutol last week Friday because it started to effect my eyes, so I am still on two. I feel good, work everyday, exercise everyday.....
I drink tap watee.
@sophie1019, I hope that you are no longer drinking your tap water or showering in it (take a bath instead) Wisconsin has the most infected water in the country with MAC organisms. You can boil your tap water for ten minutes to make suitable drinking water. Be sure to turn up the temperature on your hot water tank to 130 or higher. Wisconsin is one of the hot spots in the nation for incidence of MAC.
Hi Terri, just wondering if you sent the doc from Vancouver's letter to Mayo and if they responded? I just feel worse and worse especially at night and feel I have to do something. Planning a trip to europe in May and worried I won't feel up to it. I'm wondering if any researchers ever contact you for people to staff their clinical trials. I just kind of feel like I am running out of time. It's such a wonderful time of the year with so much family around and all I want to do is go to bed and breathe under the covers, hurts less. Anyway, wah wah poor me...Is there any way to petition drug companies to do more nitric oxide tests...sorry, just rambling. Hope everyone is ok. xo
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It was recommended that I drink no tab water. I ask the Dr yesterday about pseudomonas and he said Pseudomonas is a bacteria in water. Do you know where you get pseudomonas? I had never heard about it. Me I had radiation. That could be the cause. I didn't
want to take radiation but my husband kind of insisted but I never took the Tamoxifen ( the anti estrogen. I took Primerose Oil and still do. Did you had that bacteria?