1. < MAC & Bronchiectasis

Fungal culture

Posted by maliko @maliko, Jan 24 2:38am

I recently had a bronchoscopy with bronchoalveolar lavage to get lung fluid to test for mac. Along with acid fast culture for mac , a fungal culture is also in progress. My question is how long does it take to process results for fungal culture? Also, what fungal species are usually tested in fungal culture? And lastly, if fungus is found, are they usually treated? Is the treatment lenghty like mac? Thank you

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paxmundi | @paxmundi | Jan 27 2:39pm
In reply to @coffcoff "In answer to Aida's question of how I'm working to keep from getting MAC again: 1)..." + (show)
@coffcoff

In answer to Aida's question of how I'm working to keep from getting MAC again:
1) diligent airway clearance, with 7% saline twice a day, using an Afflovest once a day
2) purifying my drinking water in a LifeStraw pitcher
3) wearing an N95 mask when outside gardening
4) taking short showers with the bathroom vent on with shower door and bathroom doors open
5) using GERD precautions (since I have GERD) like sleeping with my head elevated 30 degrees and not eating or drinking for 3 hours before bed
6) minimizing stress , exercising and eating well to keep my immune system strong

I don't know what else I can do, because NTM is everywhere in the environment and I'll most likely find it in my lungs again, but we can only do what we can do. God bless!

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Thank you for taking the time to respond so thoroughly!

Aida

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hbcupcake | @hbcupcake | Apr 25 12:22am
In reply to @coffcoff "Barbara, I don't know, and I rather doubt, that the MAC meds treated the aspergillus infection...." + (show)
@coffcoff

Barbara, I don't know, and I rather doubt, that the MAC meds treated the aspergillus infection. Maybe the doctors didn't treat it because it wasn't very severe or because they wanted to treat the MAC first or something else, who knows? I see my local ID doc in a month and I'll ask him to clarify.

I don't know how common it is to have the fungal and the MAC infection concurrently, but I certainly did.

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Hi I'm new here and I have BE, mac, aspergillosis and abpa. My ID is treating both at the same time. Most of my side effects are from vfend. I only do ethambutol and azithromiacin, I couldn't tolerate any rif drugs. My ID prescribed Arikayce but I am waiting until I can complete the 10 day program at NJH in June. I live in California, but I feel like it's worth the time etc to get answers specific to my situation.

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2 replies
rmoore901 | @rmoore901 | Apr 25 8:12am
In reply to @hbcupcake "Hi I'm new here and I have BE, mac, aspergillosis and abpa. My ID is treating..." + (show)
@hbcupcake

Hi I'm new here and I have BE, mac, aspergillosis and abpa. My ID is treating both at the same time. Most of my side effects are from vfend. I only do ethambutol and azithromiacin, I couldn't tolerate any rif drugs. My ID prescribed Arikayce but I am waiting until I can complete the 10 day program at NJH in June. I live in California, but I feel like it's worth the time etc to get answers specific to my situation.

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Good morning. Do you mind sharing the side effects from the vfend and how long that is prescribed for? I’m about 7 weeks into Cresemba for the aspergillis and it’s been rough on top of the daily big 3. Good luck with everything. Hope you can clear soon. Also agree with you about a trip to NJH from California as well - have definitely considered that myself.

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2 replies
oaktree | @oaktree | Apr 25 9:24am
In reply to @rmoore901 "Good morning. Do you mind sharing the side effects from the vfend and how long that..." + (show)
@rmoore901

Good morning. Do you mind sharing the side effects from the vfend and how long that is prescribed for? I’m about 7 weeks into Cresemba for the aspergillis and it’s been rough on top of the daily big 3. Good luck with everything. Hope you can clear soon. Also agree with you about a trip to NJH from California as well - have definitely considered that myself.

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I will jump in to respond as I have taken voriconazole twice for 12 months at a pop. I had no side effects either time while taking voriconazole but several weeks afterwards both times my thumbnails raised from the nailbed and split ( but grew out in time) and my hair started falling out which also resolved itself after around 4-6 months. I never felt badly, however....only these 2 weird side effects.

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hbcupcake | @hbcupcake | Apr 25 3:01pm
In reply to @rmoore901 "Good morning. Do you mind sharing the side effects from the vfend and how long that..." + (show)
@rmoore901

Good morning. Do you mind sharing the side effects from the vfend and how long that is prescribed for? I’m about 7 weeks into Cresemba for the aspergillis and it’s been rough on top of the daily big 3. Good luck with everything. Hope you can clear soon. Also agree with you about a trip to NJH from California as well - have definitely considered that myself.

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I have been taking vfend since Feb 21st, I was at 300mg 2x a day, 2 weeks ago I went up to 400 2x a day. The side effects I've had are photosensitivity, confusion/forgetfulness, and seeing things about an hour after the dose. In the hospital I was hallucinating when I they would give it to me but I have no idea if that was from drug interactions. I also get sun burnt easily, 10 mins in front of the hospital window and I was already red, so I stay covered.

When I say hallucinating I mean very slight visual stuff, someone would be sitting in front of me and it looked like I needed to clear the air, similar to someone vaping. At home it has not done that. I get flashes of lines, shapes etc if I look at my tv or phone when it's off. That goes away fast (about an hour). As far as confusion sometimes I will be talking and completely forget what I'm about to say, and go into another room but forget why I went there. I've done that occasionally before, but this is several times a day. In all I think it's a great drug and clearing up my aspergillosis well.

I believe the standard treatment is 4-6 months, but varies because everyone has different conditions. Because I'm doing that and mac treatment I may have to take it longer.

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2 replies
Rick | @rstel7272 | Apr 26 7:43am
In reply to @hbcupcake "I have been taking vfend since Feb 21st, I was at 300mg 2x a day, 2..." + (show)
@hbcupcake

I have been taking vfend since Feb 21st, I was at 300mg 2x a day, 2 weeks ago I went up to 400 2x a day. The side effects I've had are photosensitivity, confusion/forgetfulness, and seeing things about an hour after the dose. In the hospital I was hallucinating when I they would give it to me but I have no idea if that was from drug interactions. I also get sun burnt easily, 10 mins in front of the hospital window and I was already red, so I stay covered.

When I say hallucinating I mean very slight visual stuff, someone would be sitting in front of me and it looked like I needed to clear the air, similar to someone vaping. At home it has not done that. I get flashes of lines, shapes etc if I look at my tv or phone when it's off. That goes away fast (about an hour). As far as confusion sometimes I will be talking and completely forget what I'm about to say, and go into another room but forget why I went there. I've done that occasionally before, but this is several times a day. In all I think it's a great drug and clearing up my aspergillosis well.

I believe the standard treatment is 4-6 months, but varies because everyone has different conditions. Because I'm doing that and mac treatment I may have to take it longer.

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hbcupcake, it sounds to me like you might have an extremely high dosage of vfend. You should have regular blood tests of the voriconazole level in your blood. I added a photo of mine with a good 3.0 level. I am 175 pounds and take 200mg 2X daily. When was your last test and what was the level?
~Rick
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1 reply
rmoore901 | @rmoore901 | Apr 26 8:43am
In reply to @hbcupcake "I have been taking vfend since Feb 21st, I was at 300mg 2x a day, 2..." + (show)
@hbcupcake

I have been taking vfend since Feb 21st, I was at 300mg 2x a day, 2 weeks ago I went up to 400 2x a day. The side effects I've had are photosensitivity, confusion/forgetfulness, and seeing things about an hour after the dose. In the hospital I was hallucinating when I they would give it to me but I have no idea if that was from drug interactions. I also get sun burnt easily, 10 mins in front of the hospital window and I was already red, so I stay covered.

When I say hallucinating I mean very slight visual stuff, someone would be sitting in front of me and it looked like I needed to clear the air, similar to someone vaping. At home it has not done that. I get flashes of lines, shapes etc if I look at my tv or phone when it's off. That goes away fast (about an hour). As far as confusion sometimes I will be talking and completely forget what I'm about to say, and go into another room but forget why I went there. I've done that occasionally before, but this is several times a day. In all I think it's a great drug and clearing up my aspergillosis well.

I believe the standard treatment is 4-6 months, but varies because everyone has different conditions. Because I'm doing that and mac treatment I may have to take it longer.

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That does sound like pretty intense side effects and a long time to stay on the meds. Clearly we want to get rid of the aspergillis but always a trade off. I was initially told 12 weeks on Cresemba but will run another set of labs and see my ID Dr next month.

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jerseyeaglegirl | @jerseyeaglegirl | Apr 26 2:42pm

I’m supposed to have that done and I’m scared to death of any complications. Can you explain your experience? Thank you

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jerseyeaglegirl | @jerseyeaglegirl | Apr 26 2:46pm

How did they confirm this? Another broncoscopy?

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1 reply
hbcupcake | @hbcupcake | Apr 27 9:05pm
In reply to @rstel7272 "hbcupcake, it sounds to me like you might have an extremely high dosage of vfend. You..." + (show)
@rstel7272

hbcupcake, it sounds to me like you might have an extremely high dosage of vfend. You should have regular blood tests of the voriconazole level in your blood. I added a photo of mine with a good 3.0 level. I am 175 pounds and take 200mg 2X daily. When was your last test and what was the level?
~Rick

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I weight 155 and was on 300 mg 2x a day, I tested at 0.5 so they're increased it. I test at the 2 week mark, next Friday. There's a possibility that based on my genetics my body processes it fast. I was in the hospital for a week due to my entire right upper lobe being plugged and collapsing from the aspergillosis and abpa. If I can figure out how to add a pic I'll show you the scan

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