Mayo Clinic Connect
I have bronchioectasis amd MAC NTM MAI, diagnosed 6 months ago. I remember recently reading that
You shouldn’t swim in chlorinated water. MAC in pool???? I know no hot tubs, showers warm waster not
Clean or polluted. Do I have it right?????
There was some discussion about chlorine between @windwalker @heathert and @tessie here http://mayocl.in/2rzpJEz and here http://mayocl.in/2qV8QS1
Are you an avid swimmer, Jennifer? Are you wondering if you have to give up swimming?
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Liked by Terri Martin., Volunteer Mentor
@franthony Do you know for sure that your case is severe enough to use such big guns? Has your dr told you that you have more than two colonies growing? After talking to my doctor at length yesterday, I think patients need to be more proactive with their treatment plan. Ask more questions. My dr refuses to use azithromycin unless it is a last resort. It is one of the strongest meds out there and he saves that one for last in case the mac becomes resistant to the others. His theory is that being on it long term can cause the mac to morph into being resistant to it, then, you have nowhere else to turn. I really do not want to be an alarmist, and you may have had a suseptability test that says nothing else will work. (that is why is important to keep your own hard copy file of mac lab work) Is your mac infection symptomatic? Are you coughing a lot and producing green sputem? Do you have cavities in your lungs? If the andwer is no, then you could probably go on a lighter form of treatment. The Big 3 cocktail does not get rid of mac, it knocks it down to an undetectable level, and then years later, it is usually back. I trust my doctor at Mayo explicitly because he is the only one in 20 years that has gotten my cough to go away (2 yrs now) and get me to a point where I feel like a halfway normal person. I had years of not being able to do much because of mac & bronchiectasis. I had to skip going to the mall with my friends; there was no way I could walk through even one large store like Dillard's; let alone a mall! You should see me now, I do pretty much anything I want to on my good energy days. (Except skiing, etc.) Low energy is the only demon I am dealing with now. Just want you to know there are other treatment options if your infection is not too severe. -Terri
Liked by tdrell, ling123
@windwalker I have a lot of respect for your doctor, Terri. It is much easier to just put your patients on medication than to give them logical reasons as to why and why not to be medicated. Unequipped with ample knowledge of the disease and the pros and cons of the drugs, the patients would be scared enough to take them without question. I'm so glad he has the patience to educate you so you can bring your knowledge to share with us. Thank you for sharing.
Liked by Jennifer, Terri Martin., Volunteer Mentor, franthony, alleycatkate
No, I don't know. This is all so new to me, having gotten all three diagnoses at once (bronchiectasis, pseudonomas and MAC at in January. She debated treating me at all, then decided to do so, noting micronodular infiltrations. This after being treated three times already for the pseudomonas in five months. One of those nodes was initially about an inch, triggering an automatic warning for cancer. That nodule diminished greatly after the first pseudo treatment. Maybe she is also considering my complicated medical history…disclaimer, I am athletic and have always been very active…of surgery for chronic ulcerative colitis in 1979, spleen removed in 1976 for ITP—an autoimmune blood disorder, numerous bouts with flu before vaccines, numerous bouts with pneumonia, RSV virus, lots of respiratory illnesses, and a history of life threatening secondary adrenal insufficiency for which I was treated in 2009. Even so, I will mention it to her when I see her in three weeks. Thanks for bringing this up.
@franthony, because of all of your other health issues, especially the autoimmune adrenal; is what gives me pause for you going on such a powerful cocktail mix. I was given inhaled tobramycin, one month on, one month off; the off months I took 10 day run of ciprofloxacin. The tobramycin cleared the pseudomonas after the first 30 days. This treatment is ongoing, it keeps the bad bugs down to an undetectable minimum. Like my doctor said, he is treating my bronchiectasis, not the mac etc. The fact that they recede is a bonus. Will you be requesting a hard copy of your mac/pseudomonas lab report?
Terri wrote: 'The Big 3 cocktail does not get rid of mac, it knocks it down to an undetectable level, and then years later, it is usually back'. Oh no. May I ask for follow up please? I cannot leave things to chance here as I'm trying my best to avoid spots to catch the same sick mac illness again. Therefore, what's next? We'll always live with it, other than lung surgery, or new research?
@bschaper2 Hi Barb. Here is the link to put you in touch with the lab you asked about for testing your water: http://www.specialpathegenslab.com The fee is $150.00 to test for strains of mac. $30.00 to test for pseudomonas or another singular bacteria. The mac test is more $$ because they have to 'babysit' the sample for 6-8 weeks to see if mac grows. Also, is it Dr. Fennelly you are seeing? Or is it a different mac specialist? I have another member who is looking for a good dr. in your area. Thank you!
@tessie Hello. I apologize in the delay in getting back to you. I have been on three consective out-of-town trips in the last two weeks. There is still a lot that science and physicians do not understand about treating mac. The doctors at National Jewish Health say that they can achieve a full 'conversion' on mac patients. Conversion means to totally eradicate mac. I don't know this to be true as there are no long term follow-up studies to prove it (to my knowledge). I know they are using some new, recently approved antibiotics. I want to make clear that NOT everyone will get mac again after successfully finishing their term on the Big 3 cocktail. They say that 50% will likely get it again. Patients with bronchiectasis tend to get reinfected because their lungs are diseased and tend to be suseptable to bacteriums. That is why I am on maintenance antibiotics indefinitely. Do you have bronchiectasis as well?
@windwalker; glad to hear you're well and able to go on trips. In answer to your question no, I don't have bronchiectasis as well. I also realize physicians do not know more about mac however, doc said he would not put me back on the Big 3 again. Thanks for your comments.
@tessie, Hello. I feel like people who do not have bronchiectasis are better able to beat it permanently because you don't have damaged lungs that attract it and trap mycobacteriums. I guess we will learn more as research progresses.
Yes, I will request one, and now that Monday 6-25 and today, 6-27, I've been sick, lethargic, cold, with a mild fever, and have no appetite, I will ask her if we should revisit the drugs. I'm one month in. This sucks!
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