m. abscessus and fevers

ej0820 · Apr 8, 2011

hey all!

I know some of you here culture m. abscessus or have kiddos that do. I remember reading that those of you that do, get fevers (or have in the past) like me. Well, I am currently doing IVs for this infection. I've been on these IVs since October of this passed year (and got my first port for this very reason). I am currenly on cefoxitin and tigecycline IVs and avalox (oral). I had a period of time around january where I thought things were looking up. I was feeling better, my CT scans were coming back showing improvement and I actually had a negative smear (I've always had positive cultures though). Well, about a month ago I woke up feeling like the last several months full of IVs had not even happened. I woke up junky and feverish and oh so crappy feeling. Now, we're still sticking with these IVs while my latest culture gets sent to texas for more sensitivities. It came back positive for m. abscessus this time (so did the smear). I've been getting fevers off an on for the last couple weeks now and they are so draining! I'm useless on days that I have fevers as they start from the moment I wake up and seem to last all day. Do you guys that culture m. abscessus get fevers often? How do you deal with them?

I'm at the point where I feel like I need to stop working. I really can't afford to quit my job, but at the same time, I don't get much done going to work with temps in the 100s...or calling off because they're really bad and I'm super sick. I am currently in school for histology and have two semesters left. I wonder if I should worry myself with finishing because I don't know that I could work in a lab with constant fevers. I worry about how I will handle my last semester which is where I will be doing clinicals (every day for 8 hours training in a hospital lab). I don't want to up and quit everything I'm doing, but I feel like I'm fighting a losing battle...at least for right now until we maybe find abx that work better.

Everything I've been told or have read also says that these abx can't really get rid of it...just keep it at bay. I'm suddenly afraid that this is what will end me, and because of that, I have less and less desire to get stressed about having to go to work with a fever, or study for a test when the only energy I have should be spared for something else. How can I deal with this? I'm scared and irritated.

Any suggestions?
Thanks.

ej0820 · Apr 8, 2011

hey all!

I know some of you here culture m. abscessus or have kiddos that do. I remember reading that those of you that do, get fevers (or have in the past) like me. Well, I am currently doing IVs for this infection. I've been on these IVs since October of this passed year (and got my first port for this very reason). I am currenly on cefoxitin and tigecycline IVs and avalox (oral). I had a period of time around january where I thought things were looking up. I was feeling better, my CT scans were coming back showing improvement and I actually had a negative smear (I've always had positive cultures though). Well, about a month ago I woke up feeling like the last several months full of IVs had not even happened. I woke up junky and feverish and oh so crappy feeling. Now, we're still sticking with these IVs while my latest culture gets sent to texas for more sensitivities. It came back positive for m. abscessus this time (so did the smear). I've been getting fevers off an on for the last couple weeks now and they are so draining! I'm useless on days that I have fevers as they start from the moment I wake up and seem to last all day. Do you guys that culture m. abscessus get fevers often? How do you deal with them?

I'm at the point where I feel like I need to stop working. I really can't afford to quit my job, but at the same time, I don't get much done going to work with temps in the 100s...or calling off because they're really bad and I'm super sick. I am currently in school for histology and have two semesters left. I wonder if I should worry myself with finishing because I don't know that I could work in a lab with constant fevers. I worry about how I will handle my last semester which is where I will be doing clinicals (every day for 8 hours training in a hospital lab). I don't want to up and quit everything I'm doing, but I feel like I'm fighting a losing battle...at least for right now until we maybe find abx that work better.

Everything I've been told or have read also says that these abx can't really get rid of it...just keep it at bay. I'm suddenly afraid that this is what will end me, and because of that, I have less and less desire to get stressed about having to go to work with a fever, or study for a test when the only energy I have should be spared for something else. How can I deal with this? I'm scared and irritated.

Any suggestions?
Thanks.

ej0820 · Apr 8, 2011

hey all!
 
 I know some of you here culture m. abscessus or have kiddos that do. I remember reading that those of you that do, get fevers (or have in the past) like me. Well, I am currently doing IVs for this infection. I've been on these IVs since October of this passed year (and got my first port for this very reason). I am currenly on cefoxitin and tigecycline IVs and avalox (oral). I had a period of time around january where I thought things were looking up. I was feeling better, my CT scans were coming back showing improvement and I actually had a negative smear (I've always had positive cultures though). Well, about a month ago I woke up feeling like the last several months full of IVs had not even happened. I woke up junky and feverish and oh so crappy feeling. Now, we're still sticking with these IVs while my latest culture gets sent to texas for more sensitivities. It came back positive for m. abscessus this time (so did the smear). I've been getting fevers off an on for the last couple weeks now and they are so draining! I'm useless on days that I have fevers as they start from the moment I wake up and seem to last all day. Do you guys that culture m. abscessus get fevers often? How do you deal with them?
 
 I'm at the point where I feel like I need to stop working. I really can't afford to quit my job, but at the same time, I don't get much done going to work with temps in the 100s...or calling off because they're really bad and I'm super sick. I am currently in school for histology and have two semesters left. I wonder if I should worry myself with finishing because I don't know that I could work in a lab with constant fevers. I worry about how I will handle my last semester which is where I will be doing clinicals (every day for 8 hours training in a hospital lab). I don't want to up and quit everything I'm doing, but I feel like I'm fighting a losing battle...at least for right now until we maybe find abx that work better.
 
 Everything I've been told or have read also says that these abx can't really get rid of it...just keep it at bay. I'm suddenly afraid that this is what will end me, and because of that, I have less and less desire to get stressed about having to go to work with a fever, or study for a test when the only energy I have should be spared for something else. How can I deal with this? I'm scared and irritated.
 
 Any suggestions?
 Thanks.

theLostMiler · Apr 8, 2011

I will get a reply or Pm when I'm on my computer I'm on my iPod and it's not fun to type a lot on. My first thought is, when you find the right combo, you will know and you will feel it and the fevers go away for a while. Secondly can you take ibuprofen? I take 3-4 200mg dose pills at a time for the fevers and those are just for my low grade 99-100 ones. Are they over 101? And lastly, for now, I imagine you have an infectious disease doctor as part of your team now or one who treats you...

theLostMiler · Apr 8, 2011

I will get a reply or Pm when I'm on my computer I'm on my iPod and it's not fun to type a lot on. My first thought is, when you find the right combo, you will know and you will feel it and the fevers go away for a while. Secondly can you take ibuprofen? I take 3-4 200mg dose pills at a time for the fevers and those are just for my low grade 99-100 ones. Are they over 101? And lastly, for now, I imagine you have an infectious disease doctor as part of your team now or one who treats you...

theLostMiler · Apr 8, 2011

I will get a reply or Pm when I'm on my computer I'm on my iPod and it's not fun to type a lot on. My first thought is, when you find the right combo, you will know and you will feel it and the fevers go away for a while. Secondly can you take ibuprofen? I take 3-4 200mg dose pills at a time for the fevers and those are just for my low grade 99-100 ones. Are they over 101? And lastly, for now, I imagine you have an infectious disease doctor as part of your team now or one who treats you...

TonyaH · Apr 8, 2011

I agree with LostMiler..Andrew had infectious disease consult on his mycobacterium abcessus also. His is resistant to most meds, so they were very helpful.

I wish there was more I could say to lighten your spirits. I know some days we just simply need to vent our frustrations, and this is a good place to be able to do that. I hope the coming days and weeks bring improved health and that your fevers subside quickly.

TonyaH · Apr 8, 2011

I agree with LostMiler..Andrew had infectious disease consult on his mycobacterium abcessus also. His is resistant to most meds, so they were very helpful.

I wish there was more I could say to lighten your spirits. I know some days we just simply need to vent our frustrations, and this is a good place to be able to do that. I hope the coming days and weeks bring improved health and that your fevers subside quickly.

TonyaH · Apr 8, 2011

I agree with LostMiler..Andrew had infectious disease consult on his mycobacterium abcessus also. His is resistant to most meds, so they were very helpful.
 
 I wish there was more I could say to lighten your spirits. I know some days we just simply need to vent our frustrations, and this is a good place to be able to do that. I hope the coming days and weeks bring improved health and that your fevers subside quickly.

ej0820 · Apr 9, 2011

I do have/see an infectious disease doc. She's the one who prescribed the tigecyl and cefoxitin. She and my CF doc are working together on this one. She's also the one who is having my latest culture sent to texas. Right now, though, it seems like we're all at a stand still. Meanwhile, my fevers and general health just continue to plummet.

I can take ibuprofen and my CF doc always says to take 600mg for fevers. Sometimes, though, it will take a full 6 hours from the time I take the ibuprofen for my fever to even begin to break. I've been getting fevers so frequently the last couple days, too, that I'm nervous to take so much ibuprofen. I had temporary kidney failure a couple years ago from meds so I'm always leary on taking large amounts of ibuprofen, for fear that it will freak my kidneys out.

Over the last two days, my fevers have ranged from 100-101.9. Some days I wake up with a low grade one (around 99), take something for it, and spike an even higher one later in the day...or vice versa. Other days, like yesterday, I'll wake up with a temp of 101 and it'll stay there all day long. There's no pattern here and the fevers that last me all day long are the ones that are the most debilitating. I mean, they truly get me EXHAUSTED. That's why I don't really know what to do anymore. Is this what things will be like for me from now on? A couple days sick as a dog, then a bounce back for a week, then sick as a dog another day, then fine the next, etc.?

Thanks for the responses.

ej0820 · Apr 9, 2011

I do have/see an infectious disease doc. She's the one who prescribed the tigecyl and cefoxitin. She and my CF doc are working together on this one. She's also the one who is having my latest culture sent to texas. Right now, though, it seems like we're all at a stand still. Meanwhile, my fevers and general health just continue to plummet.

I can take ibuprofen and my CF doc always says to take 600mg for fevers. Sometimes, though, it will take a full 6 hours from the time I take the ibuprofen for my fever to even begin to break. I've been getting fevers so frequently the last couple days, too, that I'm nervous to take so much ibuprofen. I had temporary kidney failure a couple years ago from meds so I'm always leary on taking large amounts of ibuprofen, for fear that it will freak my kidneys out.

Over the last two days, my fevers have ranged from 100-101.9. Some days I wake up with a low grade one (around 99), take something for it, and spike an even higher one later in the day...or vice versa. Other days, like yesterday, I'll wake up with a temp of 101 and it'll stay there all day long. There's no pattern here and the fevers that last me all day long are the ones that are the most debilitating. I mean, they truly get me EXHAUSTED. That's why I don't really know what to do anymore. Is this what things will be like for me from now on? A couple days sick as a dog, then a bounce back for a week, then sick as a dog another day, then fine the next, etc.?

Thanks for the responses.

ej0820 · Apr 9, 2011

I do have/see an infectious disease doc. She's the one who prescribed the tigecyl and cefoxitin. She and my CF doc are working together on this one. She's also the one who is having my latest culture sent to texas. Right now, though, it seems like we're all at a stand still. Meanwhile, my fevers and general health just continue to plummet.
 
 I can take ibuprofen and my CF doc always says to take 600mg for fevers. Sometimes, though, it will take a full 6 hours from the time I take the ibuprofen for my fever to even begin to break. I've been getting fevers so frequently the last couple days, too, that I'm nervous to take so much ibuprofen. I had temporary kidney failure a couple years ago from meds so I'm always leary on taking large amounts of ibuprofen, for fear that it will freak my kidneys out.
 
 Over the last two days, my fevers have ranged from 100-101.9. Some days I wake up with a low grade one (around 99), take something for it, and spike an even higher one later in the day...or vice versa. Other days, like yesterday, I'll wake up with a temp of 101 and it'll stay there all day long. There's no pattern here and the fevers that last me all day long are the ones that are the most debilitating. I mean, they truly get me EXHAUSTED. That's why I don't really know what to do anymore. Is this what things will be like for me from now on? A couple days sick as a dog, then a bounce back for a week, then sick as a dog another day, then fine the next, etc.?
 
 Thanks for the responses.

TonyaH · Apr 10, 2011

Andrew has spent the past three weeks running temps of between 99.5 to 100.5. They don't make him feel miserable, but I can tell he is not 100%. He is being treated with TOBI and Cipro currently because his last ntm smear came back negative so we are assuming it is pa. So, I can't relate to the constant fevers in the 101s, but it sounds like it is draining you. Again, I'm sorry you are feeling so crummy. I hope your docs find the right combination of meds soon. Please don't give up hope on all of the plans you had for your future! As frustrating as this is, you could feel so much better once they find the right meds. I know this is easy for me to say, as I am the caregiver, not the patient. Trust me, that fact is not lost on me. But I will encourage Andrew to hang in there when he needs it, and I'll say the same to you!

I'm sending you some postive vibes, and hoping they will help!

TonyaH · Apr 10, 2011

Andrew has spent the past three weeks running temps of between 99.5 to 100.5. They don't make him feel miserable, but I can tell he is not 100%. He is being treated with TOBI and Cipro currently because his last ntm smear came back negative so we are assuming it is pa. So, I can't relate to the constant fevers in the 101s, but it sounds like it is draining you. Again, I'm sorry you are feeling so crummy. I hope your docs find the right combination of meds soon. Please don't give up hope on all of the plans you had for your future! As frustrating as this is, you could feel so much better once they find the right meds. I know this is easy for me to say, as I am the caregiver, not the patient. Trust me, that fact is not lost on me. But I will encourage Andrew to hang in there when he needs it, and I'll say the same to you!

I'm sending you some postive vibes, and hoping they will help!

TonyaH · Apr 10, 2011

Andrew has spent the past three weeks running temps of between 99.5 to 100.5. They don't make him feel miserable, but I can tell he is not 100%. He is being treated with TOBI and Cipro currently because his last ntm smear came back negative so we are assuming it is pa. So, I can't relate to the constant fevers in the 101s, but it sounds like it is draining you. Again, I'm sorry you are feeling so crummy. I hope your docs find the right combination of meds soon. Please don't give up hope on all of the plans you had for your future! As frustrating as this is, you could feel so much better once they find the right meds. I know this is easy for me to say, as I am the caregiver, not the patient. Trust me, that fact is not lost on me. But I will encourage Andrew to hang in there when he needs it, and I'll say the same to you!
 
 I'm sending you some postive vibes, and hoping they will help!

theLostMiler · Apr 10, 2011

With the over 101 temps, have you mentioned that to your doctors? That is something my doctors always seemed concerned and ask me b/c I think they think it might be something other than the NTM.

I imagine you might have already been asked this as well but do you chart your fevers? Because sometimes you can get the drug fevers and so when I am on ivs and still getting fevers I will chart to see if I am having them at about the same time after an infusion (b/c that could be infection of the port/picc too).

In my day to day living, I pretty much always get a fever in the morning too, I dont wake up with one but if I start moving around I'll get one, and it will exacerbate and worsen as I do my treatment and get the gunk moving out. Have you noticed that too?

It sounds like you have a great ID doctor, has she mentioned calling Texas and/or Denver at all? My ID doc called Denver when he was unsure about stopping my iv meds once, and they were more than helpful. My ID doc also said it would be okay if I went for a consult, but at that point I was feeling better so I didnt feel the need.

Lastly, how is the appetite? Fevers KILL my appetite, and the less calories the more fevers I have and its a viscious cycle. I notice that when I get my appetite back and/or get more calories in that really helps reduce the impact of the fevers (generally haha) and sometimes even stop them.

Okay I lied, I have another question b/c I cant remember if we have already talked about it... but what other bugs do you grow? B/c with the b. cepecia sometimes after I finish a round of treatment for M.A. I have to do a round of abx for b. cepecia b/c with all the extra room it decides to have a party and give me fevers... My docs actually dont prefer to treat my M.A. (with the meds that can affect it) b/c I did develope some resistances so if I get the fevers they generally shoot for the b. cepacia first.

AND (I am sooo sorry I am just brainstorming here). I know its scary but has transplant been brought up to you yet? I had it brought up in 2008, by a transferring tx/cf doc b/c with my bugs and the worry of a downturn as far as sensativies, my doctor started sending out my information ASAP to centers. M.A. is actually more of a problem on my coast (the west coast) than the strain of b. cepecia I have (My tx/cf doc said once something about m.a. is actually kinda dangerous for the actual wounds after tx). The idea was NOT to get listed, but to have a center say, "When the time comes, we will transplant you"... I can tell you that it has been such a relief knowing I have things in place if a sudden decline happens...

Well if anything, I did want you to know that for the most part I have been there! I am sure that once the new texas results come back they will find something new and get you on the right course. It is soo depressing and scary when you feel like poop every day b/c of a fever(s)... feel free (Tonya too <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol) to add me on facebook (I'll PM you my name) if you would like to talk at ANY time, just to have someone who gets fevers everyday and is achy and in pain all the time listen (but I warn I may join in lol)

theLostMiler · Apr 10, 2011

With the over 101 temps, have you mentioned that to your doctors? That is something my doctors always seemed concerned and ask me b/c I think they think it might be something other than the NTM.

I imagine you might have already been asked this as well but do you chart your fevers? Because sometimes you can get the drug fevers and so when I am on ivs and still getting fevers I will chart to see if I am having them at about the same time after an infusion (b/c that could be infection of the port/picc too).

In my day to day living, I pretty much always get a fever in the morning too, I dont wake up with one but if I start moving around I'll get one, and it will exacerbate and worsen as I do my treatment and get the gunk moving out. Have you noticed that too?

It sounds like you have a great ID doctor, has she mentioned calling Texas and/or Denver at all? My ID doc called Denver when he was unsure about stopping my iv meds once, and they were more than helpful. My ID doc also said it would be okay if I went for a consult, but at that point I was feeling better so I didnt feel the need.

Lastly, how is the appetite? Fevers KILL my appetite, and the less calories the more fevers I have and its a viscious cycle. I notice that when I get my appetite back and/or get more calories in that really helps reduce the impact of the fevers (generally haha) and sometimes even stop them.

Okay I lied, I have another question b/c I cant remember if we have already talked about it... but what other bugs do you grow? B/c with the b. cepecia sometimes after I finish a round of treatment for M.A. I have to do a round of abx for b. cepecia b/c with all the extra room it decides to have a party and give me fevers... My docs actually dont prefer to treat my M.A. (with the meds that can affect it) b/c I did develope some resistances so if I get the fevers they generally shoot for the b. cepacia first.

AND (I am sooo sorry I am just brainstorming here). I know its scary but has transplant been brought up to you yet? I had it brought up in 2008, by a transferring tx/cf doc b/c with my bugs and the worry of a downturn as far as sensativies, my doctor started sending out my information ASAP to centers. M.A. is actually more of a problem on my coast (the west coast) than the strain of b. cepecia I have (My tx/cf doc said once something about m.a. is actually kinda dangerous for the actual wounds after tx). The idea was NOT to get listed, but to have a center say, "When the time comes, we will transplant you"... I can tell you that it has been such a relief knowing I have things in place if a sudden decline happens...

Well if anything, I did want you to know that for the most part I have been there! I am sure that once the new texas results come back they will find something new and get you on the right course. It is soo depressing and scary when you feel like poop every day b/c of a fever(s)... feel free (Tonya too <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol) to add me on facebook (I'll PM you my name) if you would like to talk at ANY time, just to have someone who gets fevers everyday and is achy and in pain all the time listen (but I warn I may join in lol)

theLostMiler · Apr 10, 2011

With the over 101 temps, have you mentioned that to your doctors? That is something my doctors always seemed concerned and ask me b/c I think they think it might be something other than the NTM.
 
 I imagine you might have already been asked this as well but do you chart your fevers? Because sometimes you can get the drug fevers and so when I am on ivs and still getting fevers I will chart to see if I am having them at about the same time after an infusion (b/c that could be infection of the port/picc too).
 
 In my day to day living, I pretty much always get a fever in the morning too, I dont wake up with one but if I start moving around I'll get one, and it will exacerbate and worsen as I do my treatment and get the gunk moving out. Have you noticed that too?
 
 It sounds like you have a great ID doctor, has she mentioned calling Texas and/or Denver at all? My ID doc called Denver when he was unsure about stopping my iv meds once, and they were more than helpful. My ID doc also said it would be okay if I went for a consult, but at that point I was feeling better so I didnt feel the need.
 
 Lastly, how is the appetite? Fevers KILL my appetite, and the less calories the more fevers I have and its a viscious cycle. I notice that when I get my appetite back and/or get more calories in that really helps reduce the impact of the fevers (generally haha) and sometimes even stop them.
 
 Okay I lied, I have another question b/c I cant remember if we have already talked about it... but what other bugs do you grow? B/c with the b. cepecia sometimes after I finish a round of treatment for M.A. I have to do a round of abx for b. cepecia b/c with all the extra room it decides to have a party and give me fevers... My docs actually dont prefer to treat my M.A. (with the meds that can affect it) b/c I did develope some resistances so if I get the fevers they generally shoot for the b. cepacia first.
 
 AND (I am sooo sorry I am just brainstorming here). I know its scary but has transplant been brought up to you yet? I had it brought up in 2008, by a transferring tx/cf doc b/c with my bugs and the worry of a downturn as far as sensativies, my doctor started sending out my information ASAP to centers. M.A. is actually more of a problem on my coast (the west coast) than the strain of b. cepecia I have (My tx/cf doc said once something about m.a. is actually kinda dangerous for the actual wounds after tx). The idea was NOT to get listed, but to have a center say, "When the time comes, we will transplant you"... I can tell you that it has been such a relief knowing I have things in place if a sudden decline happens...
 
 Well if anything, I did want you to know that for the most part I have been there! I am sure that once the new texas results come back they will find something new and get you on the right course. It is soo depressing and scary when you feel like poop every day b/c of a fever(s)... feel free (Tonya too <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol) to add me on facebook (I'll PM you my name) if you would like to talk at ANY time, just to have someone who gets fevers everyday and is achy and in pain all the time listen (but I warn I may join in lol)

theLostMiler · Apr 10, 2011

Oh and just really saw the CFRD on your signature... is that well controlled? DCould that be exacerbating your symptoms too? I dont have that so I am not sure how that would affect (but I feel like high blood sugars would weaken your body and let the M.A. do even more bad).

theLostMiler · Apr 10, 2011

Oh and just really saw the CFRD on your signature... is that well controlled? DCould that be exacerbating your symptoms too? I dont have that so I am not sure how that would affect (but I feel like high blood sugars would weaken your body and let the M.A. do even more bad).

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