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Posts (3160)

2 days ago · New sputum results. Have to make a decision. in MAC & Bronchiectasis

@fdixon63 Yes, my sputem is collected at the dr's office into a sample container that I spit into. You can collect it at home if you have a sterile container to spit into. (you will need a deep down coughed up sample) If you cannot produce that, you can do an inhaled saline induced treatment that will force it up.It will have to be kept refrigerated until you take it to turn into for lab work. My Mayo doc doesn't like to use the Big 3 right off the bat until he has tried lighter treatments like mine. Then, if that doesn't clear the infection, he will use the Big 3. Since you are not very ill with it, that may be a good option for you. Do you also have bronchiectasis? If so, infections will most likely re-occur without continuous maintenance drugs. That is my case anyway, although there are other members on our site that have a stronger immune system than me and are doing alright so far using alternative medicine or none at all. For some people, the infection goes away on it's own. I have a feeling those people are not the ones that get sick enough to seek out this site. Treating MAC is not a 'One Size Fits All' thing. It must be customized surrounding your susceptibility results, specie of mac, and colony numbers. Will you report back and let me know what your dr thinks?

2 days ago · Anyone taking Clofazamine??? in MAC & Bronchiectasis

@gaylewroc Hi Gayle. There was discussion at the World NTM Conference back in 2016. I was there and it was a drug they discussed that held great promise. I believe some physicians can get it prescribed as a specialty drug for rare diseases. It is a good alternate for those that are found to be non-suseptable to other antibiotics. https://www.ntminfo.org/clofazimine/ When will you start the study?

3 days ago · I am new to Mayo and have my first appointment on Aug 5th. in MAC & Bronchiectasis

@lmh7 Many people ask me that question. You can click on my picture icon and my treatment plan should pop up. Let me know if you have any questions. Just know that my plan may not work for everybody. It depends on your susceptibility testing and specie of mac. But, at least you will have an idea of another mode of treatment. Do you have results from your susceptibility test?

3 days ago · Do your symptoms come and go while on the Big 3? in MAC & Bronchiectasis

@lmh7 Hello. When is the last time you had a sputem test done?

3 days ago · New sputum results. Have to make a decision. in MAC & Bronchiectasis

@fdixon63 Hi there. I had pseudomonas back in 2016. I was treated with 28 days on inhaled tobramycin. My symptoms disappeared after the 28 days, but I remain to this day on a bi-monthly regimen of tobramycin and ciprofloxacin. I have tested negative for the last three yrs. and my dr says that I will need to be on maintenance antibiotics for life most likely. So far, I have had no side affects from the meds. The reason for lifetime of antibiotics is because of the bronchiectasis. I will always be susceptible to mac and pseudo. So far, my treatment plan has been working. I don't think our goal can be to permanently eradicate these diseases, but rather to prevent them from re-occurring.

Mon, Sep 9 6:15am · In shock after MAC diagnosis in MAC & Bronchiectasis

@sylvermoon8 It seems that many of us on this site with mac; have been avid gardeners. Hmmm…..

Mon, Sep 9 8:31am · Extreme fatigue with MAC in MAC & Bronchiectasis

@sylvermoon8 I looked up NIH, and I guess they are strictly research. Not sure if they take patients in like Mayo does. They do have a number for patients wanting to be included in research. I received successful treatment at Mayo Clinic; but I know that they use my medical records for their research. Here is the number for patient intake at NIH. You can ask about treatment there, or ask for recommendations for nearby clinics that may be a spin-off from them. Here is the number: 1-800-411-1222


@lorifilipek We are fine. Thank you so much for thinking of me. How are you doing?