1. < MAC & Bronchiectasis

Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by shiell @shiell, Feb 25, 2017

I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

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robynmar | @robynmar | Jul 14, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

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How often do your doctors test your sputum? Is it on a regular basis or only when you feel sick? robynmar

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

Jump to this post

I get checked every six months. They just moved it to 1 yr because I have
been doing so well. If I get an infection before then, I will go in for testing.
But I am on maintenance antibiotics for the rest of my life to try to prevent
infections from re-occurring. I am still waiting for results from my last dr
visit. It takes awhile to grow the MAC and pseudomonas. So, we will see if I am
clean now.
 

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robynmar | @robynmar | Jul 14, 2017
In reply to @katemn "@auntnanny .. Jan, green sputum usually means pseudomonas. PLEASE have your doctor check for this. Hugs..." + (show)
@katemn

@auntnanny .. Jan, green sputum usually means pseudomonas. PLEASE have your doctor check for this. Hugs Katherine

From my File Cabinet:
PSEUDEMONIS INFECTION- COUGHING BADLY Member @windwalker, Terri I am on a bi-monthly cycle of 28 days on tobramycin (inhaled antibiotic with nebulizer) then 10 days off, then 10 days on cipro, then 10 days off, then back on tobramycin.

Member @pamelasc1, Pamela, and @jentaylor My cough got much worse and I was coughing up stuff I could not believe - my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC - has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff - you may want to get a test for pseudemonis, just to rule it out. The sputum had a distinct taste, smell & color (dark gray & dark green) or color was off white, gray maybe a bit greenish, but mostly grey - and very thick and mucousy.
http://www.medicinenet.com/script/main/art.asp?articlekey=20161

Member @tay4rake I too was diagnosed with pseudomonas after having MAC two times. The first treatment for pseudomonas was a 14 day Rx of Ciprofloxacin. I felt better immediately and the symptoms went away. Within 2 weeks of finishing my Rx the symptoms started to come back. My sputum was retested and I still had pseudomonas. I was prescribed the Tobymycin Inhaler for 30 days. I have very good insurance but my out of pocket was over $1000. It was worth every penny. The Tobymycin worked and I have been feeling major symptom free since I finished it May 2016.

Member @windwalker, Terri Healthwell is a charitable organization that helps with your co-pay if you fall within a certain financial bracket. They helped pay for my tobramycin. Am super grateful for it. I do donate voluntarily back to them some $$ to give back and help replenish their funds. Hope this helps. Also, if any of you out there want to donate to them, it is a tax deductible item. Plus, it helps many people, especially those with Cystic Fibrosis. (Tobymycin is expensive, but there are other charities that help pay for it. The specialized Walgreen's pharmacy has a list of those charities. Treatment with 'Toby' is ONE drug, nebulized straight into the lungs, no harsh side-effects.)

Member @shiell I have read everything today that I find on this site. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and relatively active. Caretaker part time for spouse with end stage COPD. Thanks for being here. .. and .. After beginning tobramycin inhalation I developed what was believed to be "orbital cellulitus", hospitalized, put on oxygen( never had been before) my skin and eye looked bad. The eye doc though "contact dermatitis". After three days was discharged and saw my eye doc four days later. Eye looks pretty good prescribed Tobra ointment, used that night, same eye next A.M. back to doc. Now doing the inhaling, not believing I'm tied to the O2

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Hi, Member @shiell: I'm another oldster, I'll be 90 in December. My MAC damage goes back to radiation for breast cancer when I was 60. Lots of pneumonias since then. First bout with MAC and 3 drug treatment was in 2001. Now it's back. I currently have a lung infection of Proteus m. and am on Bactrim. I think Cipro would have been a better choice. I'm sorry to learn that serial lung infections seem to be part of the MAC legacy. I'd rather be baking cookies and hugging my grandkids. robynmar

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auntnanny | @auntnanny | Jul 14, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

Jump to this post

I just have it tested when I start to cough...... no definite timeline. Does it make sense to you that I stop coughing for basically a month after 10 days of antibiotics -- but still have mac or pseudomonas???? If that were the case, why would the coughing cease? As you can tell, I don't know much

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Katherine, Alumni Mentor | @katemn | Jul 14, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

Jump to this post

@auntnanny, Jan, you seem very comfortable with Dr Moua at Mayo .. but you do seem very concerned. Each of us has the right to a second opinion to feel serene .. you said: " lady in Colorado Springs (retired schoolteacher) who uses National Jewish and feels that are by far the best place to be." If you feel the need for a good second opinion NJH is an excellent place to get it. Hugs to you! Katherine

From my File Cabinet:
JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don't be afraid to call them and ask that question; they are extremely kind and professional. I really like my Dr. Drummond.

FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH......for the first 50 years of their existence....1898 til 1958 they did not charge clients..I am on Medicare....they accepted it fully....3 months after my trip....l have yet to see a bill....they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true....but it is there to help people. l beg you to contact them to check

From member @tdrell, Terri : At National Jewish Health last week, all I did was show my Medicare card then my supplement card......no other mention of $/payments. I could focus my energy on the rigorous tests without worry about paying for pricey tests....especially as they were added.

Member @beatitnow ..my doctor is Dr. Castro at Barnes Jewish Hospital. The phone number is 314-454-8917

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auntnanny | @auntnanny | Jul 15, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

Jump to this post

Thank you for writing. I felt comfortable with Dr. Moua and Mayo's; however, after reading many articles here on this site, I guess it has me wondering if I'm diagnosed correctly. I have no special reasons to doubt and thought I was doing okay, but perhaps since my sputum tests are coming back negative.......... maybe something is wrong with the testing. It is the same lab that did the test that showed pseudomonas a few months ago --- but has not shown that since. I surely hope they aren't missing that. I'll start coughing again within a few weeks and perhaps I should go to another lab just to be sure that the one in Tulsa is not missing something. Do any others following this site have negative tests but still have flares of coughing? I originally thought if I was having a flare that there was some type bacteria causing it. Now, after four sessions and nothing found....... I believe that is why I feel somewhat worried. Perhaps others have same and have negative reports and I would love to hear from anyone if so. Thanks again for keeping up with me (of course I'm old and slow, so I don't move very quickly. My last conversation with Dr. Moua (after 4th tests) was left that I would contact him immediately if anything is found on future tests.

REPLY
Katherine, Alumni Mentor | @katemn | Jul 15, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

Jump to this post

@auntnanny, Jan, REMEMBER .. we are ALL about "Due Diligence" .. of COURSE you should seek out a "second opinion" about a lab! Call the best hospital in town and ask WHERE do THEY send their lab work? Don't take no for an answer .. be persistent! Ask around .. you have to be your OWN best advocate Girlfriend! When you have FOUND the lab you want to go to .. you THEN have to contact your doctor to have him send the ORDER to that PARTICULAR LAB. Go for it! Hugs! Katherinne

REPLY
auntnanny | @auntnanny | Jul 15, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

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Katherine ----- I'm 2 hours from Tulsa (and the closest hospital is 30 minutes away. They send all their lab work to the lab in Tulsa. So..... there's really no choice within 100 miles of here. Tulsa is a large lab and all the rural areas send to them. My husband drives my sample down there as soon as I collect it or -- there is transportation from one of the smaller hospitals that drives their lab work to Tulsa at a certain time each day. I can catch that transportation some of the time.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 15, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

Jump to this post

@auntnanny Jan,
ask if they tested you for pseudomonas. We cannot ASSUME that all of the
organisms are being tested for. I have a sneaking feeling that I wasn&apos;t tested
four yrs ago and had it all along. When it was caught in 2016 and treated, ALL
of my coughing went away.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 15, 2017
In reply to @auntnanny "My last four sputum tests have come back negative -- which I don't understand. I did..." + (show)
@auntnanny

My last four sputum tests have come back negative -- which I don't understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

Jump to this post

@auntnanny, When I attended the MAC conference this past
spring, it was mentioned that Lab Corp and the like are not thorough when
testing for these kinds of mycobacteriums. That is why I go to research
institutions where I KNOW they are doing it right. NTM Foundation is trying to
pass a law that the independent labs HAS to test our samples right down to the
SPECIE of MAC.
 

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