B cepacia symptoms

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shaydenise

New member
Hi everyone, I'm new to these forums, first time poster. My husband has CF (F508/2184insA)and we've recently run into an issue of B cepacia with a family member.
My H's father has had a sinus/respiratory infection for the past few months (he does not have CF). Recently his doctor finally did a culture (why they waited so long is beyond me) which revealed three different bacteria, one of which is b cepacia.
Clearly, because of this it would be not be a good idea for my H to be around his dad right now, but my question is how soon would someone with CF start experiencing symptoms of b cepacia once exposed to someone who had it. The last time my H was around his dad was mid-February, so I would think that since my H has CF the symptoms would appear quickly and with more force than with his dad. We don't know if his dad had the bacteria at that time since he just found out the the results of the culture this morning, and my H has not experienced any symptoms out of the ordinary. The last week or so he has had a little bit more of a cough than usual, but that is pretty typical for him when the seasons/weather changes (of course, now I'm scaring myself into thinking it's something more serious)
H has his routine appointment on Wednesday so we will be discussing it with his doctor at that time but I guess I'm just looking for a little bit of information in the mean time. I've tried searching for information and the timeline for symptoms but I guess I'm just not searching the right terminology or in the right places. TIA for any information you can provide and sorry this got so long!
 
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shaydenise

New member
Hi everyone, I'm new to these forums, first time poster. My husband has CF (F508/2184insA)and we've recently run into an issue of B cepacia with a family member.
My H's father has had a sinus/respiratory infection for the past few months (he does not have CF). Recently his doctor finally did a culture (why they waited so long is beyond me) which revealed three different bacteria, one of which is b cepacia.
Clearly, because of this it would be not be a good idea for my H to be around his dad right now, but my question is how soon would someone with CF start experiencing symptoms of b cepacia once exposed to someone who had it. The last time my H was around his dad was mid-February, so I would think that since my H has CF the symptoms would appear quickly and with more force than with his dad. We don't know if his dad had the bacteria at that time since he just found out the the results of the culture this morning, and my H has not experienced any symptoms out of the ordinary. The last week or so he has had a little bit more of a cough than usual, but that is pretty typical for him when the seasons/weather changes (of course, now I'm scaring myself into thinking it's something more serious)
H has his routine appointment on Wednesday so we will be discussing it with his doctor at that time but I guess I'm just looking for a little bit of information in the mean time. I've tried searching for information and the timeline for symptoms but I guess I'm just not searching the right terminology or in the right places. TIA for any information you can provide and sorry this got so long!
 
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JustDucky

New member
Wow, I know this is off topic, but has your husband's father had issues with his sinuses all of his life? I ask because it isn't common to grow out cepacia, when I grew that out, my primary doctor went looking for causes and started testing me for CF....I was dx at 33. He is at least a carrier....but you never know, he may have another milder mutation which would make him present in a non classical way. Might be worth looking into..

Okay, back to the question, definitely discuss it with your husbands doctor.....this is a tough situation. The symptoms of active cepacia (flare up) kind of feels like a PA exacerbation...low grade fevers, gunky lungs, more plugs etc and feeling extremely tired. He should get a culture done to see if he is growing it out.

Jenn 40 wCF
 
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JustDucky

New member
Wow, I know this is off topic, but has your husband's father had issues with his sinuses all of his life? I ask because it isn't common to grow out cepacia, when I grew that out, my primary doctor went looking for causes and started testing me for CF....I was dx at 33. He is at least a carrier....but you never know, he may have another milder mutation which would make him present in a non classical way. Might be worth looking into..

Okay, back to the question, definitely discuss it with your husbands doctor.....this is a tough situation. The symptoms of active cepacia (flare up) kind of feels like a PA exacerbation...low grade fevers, gunky lungs, more plugs etc and feeling extremely tired. He should get a culture done to see if he is growing it out.

Jenn 40 wCF
 
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shaydenise

New member
That's the really weird thing! My H's father has always been in great health and has never had any issues with sinuses or any respiratory problems. I just don't quite understand how he could contract this bacteria since it's so rare. We talked to my H's doctor on the phone last night and she confirmed that it is really rare to contract it. We took a cruise in December and she said he could have gotten it then, but I would think that my H would have been way more susceptible to getting it than his father. H has his routine doctor appointment tomorrow and since they test his sputum every time so we'll know if anything comes up in his culture. He hasn't had any symptoms out of the ordinary, so we're hoping everything comes back negative.

Another odd thing about H's dad, we found out last night that there was another culture test done about a month ago and it was negative (another reason I don't think it was the cruise). It's all just kind of scary because even once he's treated for it it can still be colonized in his body and H's doctor said he will have to be extremely cautious when around his dad. I guess we'll see what happens in the next few weeks/months as H's dad takes the right kind of antibiotics to target this.

Thanks for your response!
 
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shaydenise

New member
That's the really weird thing! My H's father has always been in great health and has never had any issues with sinuses or any respiratory problems. I just don't quite understand how he could contract this bacteria since it's so rare. We talked to my H's doctor on the phone last night and she confirmed that it is really rare to contract it. We took a cruise in December and she said he could have gotten it then, but I would think that my H would have been way more susceptible to getting it than his father. H has his routine doctor appointment tomorrow and since they test his sputum every time so we'll know if anything comes up in his culture. He hasn't had any symptoms out of the ordinary, so we're hoping everything comes back negative.

Another odd thing about H's dad, we found out last night that there was another culture test done about a month ago and it was negative (another reason I don't think it was the cruise). It's all just kind of scary because even once he's treated for it it can still be colonized in his body and H's doctor said he will have to be extremely cautious when around his dad. I guess we'll see what happens in the next few weeks/months as H's dad takes the right kind of antibiotics to target this.

Thanks for your response!
 
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Printer

Active member
Several of us have had "LATE DX", one women out here was dx at age 70 and I know of another dx at age 74. H's dad should have a FULL CF SEQUENCING DONE.

Bill
 
P

Printer

Active member
Several of us have had "LATE DX", one women out here was dx at age 70 and I know of another dx at age 74. H's dad should have a FULL CF SEQUENCING DONE.

Bill
 
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shaydenise

New member
Hi everyone, just a little update. My husband just talked to his doctor and she said exactly what you did, Bill. That his dad needs to be tested for CF (his dad is in his late 60s, for reference). He said that it is incredibly rare for someone without CF (or without pulmonary concerns) to get b cepacia.

Thank you all for your help! I've learned quite a bit lurking on this board and I hope to learn more.
 
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shaydenise

New member
Hi everyone, just a little update. My husband just talked to his doctor and she said exactly what you did, Bill. That his dad needs to be tested for CF (his dad is in his late 60s, for reference). He said that it is incredibly rare for someone without CF (or without pulmonary concerns) to get b cepacia.

Thank you all for your help! I've learned quite a bit lurking on this board and I hope to learn more.
 
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JustDucky

New member
I have heard of very late diagnoses especially now that sequencing has come so far (there are 1600 known mutations thus far and counting). Like I said in my original post to you, it was a HUGE red flag for my very smart primary doc to look into CF. They even recultered me just to make sure that there were no mistakes.. If your husband's father is found to have CF, I am sure it will be a huge shock for him and an adjustment as well.. Keep us updated.....keeping all of you in my thoughts and prayers

Jenn 40 w/CF
 
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JustDucky

New member
I have heard of very late diagnoses especially now that sequencing has come so far (there are 1600 known mutations thus far and counting). Like I said in my original post to you, it was a HUGE red flag for my very smart primary doc to look into CF. They even recultered me just to make sure that there were no mistakes.. If your husband's father is found to have CF, I am sure it will be a huge shock for him and an adjustment as well.. Keep us updated.....keeping all of you in my thoughts and prayers

Jenn 40 w/CF
 
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