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False negative?

In: General Discussion
3 1495
K

Has anyone had a negative culture for MAC in between 2 positive cultures. Makes me wonder if there are false negatives.

Latest Activity: August 8, 2018
7
3 Replies

Replies

g

Yes, there are false negatives and false positives and contamination in testing situations, but read on.

Yes, I have had negatives mixed in with positives for pulmonary MAC. Your lung has five lobes and most of us have scaring, nodules, mucous plugs, and inflamed bronchial tubes so our lungs are weakened. Maybe MAC is not growing in all of your lung's lobes or it is growing behind some of the mucous plugs. Maybe you just could not cough up a good sample (remember those weak lungs). I have had positive and negative results from samples taken 3 days in a row, as well as a month apart. This is partly why the standard is you must go 12 months without having a positive sputum sample.

Latest Activity: August 1, 2018
8

Comments

K

Thank you for sharing your experience. I always have a hard time coughing the sputum up and out and suggest to my doc that I wasn't producing a good enough sample. He dismissed that though and didn't give me any explanation. Yours helps alot.

Latest Activity: August 3, 2018
2
K

I am trying to do sample too its hard.

Latest Activity: August 3, 2018
1
M

Hi gardeniatexas,
Do you mind me asking how long you’ve had Mac? I was recently diagnosed and my doctor did not prescribe a nebulizer nor a vest. It’s not a good fit with my current doctor and I will be changing doctors in January but in the meantime I am advocating for myself. I recently asked my doctor to prescribe saline for nebulizing and I am wondering about the vest. Is it too soon? My Mac was caught quite early on, I don’t have a lot of sputum, but I’m looking to do everything I can I can to be my healthiest. Any thoughts? Thank you!

Latest Activity: August 5, 2018
3
K

The vest s a good thing but be sure to check on the best one. I and others have had Hil Rom and it didn't help us much at all. I hear a about the Afflo Vest its portability is very like able. Each to his own. One is good for one may not be another. I found the hypertonic saline 7% helped me more than the vest did.

Latest Activity: August 6, 2018
g

@Macfit

While I was diagnosed 5 years ago, I had been complaining to doctors for about 5 years before that so by the time it was caught, all 5 lobes of my lungs were infected and had nodules. After I was diagnosed with pulmonary MAC (NTM) and bronchiectasis, it took a few years to finally get a set of doctors that understood the situation and were ___proactive___. My first pulmonologist knew to put me on the 3 oral antibiotics, but did not know a bunch of other standard treatments (monthly sputum samples, what to do if the 3 oral antibiotics did not clear the infection, what to do about the bronchiectasis). Fortunately I now see a research pulmonologist who specializes in this at UT Health Science Center in Tyler, Texas (about 3.5 hours from where I live) and an excellent. immunologist.

I do believe that the nebulized saline and the airway clearance vest are keeping me stable (along with a many meds) and help me not get near as many other lung infections.

Latest Activity: August 6, 2018
4
Q

@Macfit Hi Macfit;
I don't have MAC, but have been using a vest for a little more than 2 months now and found that it is slowing helping me bring up phlegm. I also use a nebulizer with albuterol, brovana and budesonide. My vest is from Respirtek. I'm happy with the vest, the caregiver who showed me how to use it, and the people from Respirtek who have been extremely supportive. Because I also have Bronchectasis, my doctor recommends using the vest with a hypertonic saline solution. Hope this helps!

Latest Activity: August 7, 2018
5
K

I had the vest Hil Rom and I felt it didn't help me. I use hypertonic saline 7% is the purest. Now pulmo PA is calling in mucomyst I hate that stuff. We are trying to get a sputum sample its so hard for me to do this. Last one was normal but they want to check see if any other bugs are there.

Latest Activity: August 8, 2018
2
K

KC,

We are here to assist one another to get the information we need.

Latest Activity: August 3, 2018
5
g

Here are some of the things I do to help me cough up sputum.

I first use nebulized saline (a pulmonologist can prescribe this - I use 7% saline). You would need to get a nebulizer machine as well as the prescribed saline. I actually use the saline DAILY as it does help keep things looser in my lungs. At the same time I use the RespirTech InCourage therapy vest which performs percussion on my lungs (expensive and insurance may not approve). I also use this vest daily (I use a flutter valve when traveling). On days that I need a sputum sample (which should be at least monthly), after I have done the nebulized saline while using the vest, I get on our inclined bed (head on lowest end and I am on my stomach). In this position I get my husband to do percussion on my back and sides for a few minutes to again help loosen up the mucous. We have also found that using an electric vibrating body massager on my back irritates and loosens mucous my lungs. Then I work hard for 20 to 30 minutes while standing to cough up mucous for my sample. I try to forceably make the hard "K" sound. Yes, it is hard and is hard work. It is no fun, but I want to try to get the best sputum sample I can. Even without the nebulized saline and therapy clearance vest, you can do the other steps. I am usually hoarser than usual for the rest of the day AND my lungs usually feel a little clearer for the rest of my sputum sample days.

Latest Activity: August 4, 2018
10

Comments

K

Thank you, I appreciate the input ad the helpful hints.

Latest Activity: August 6, 2018
2

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