WBC ESR and CRP hardly rise with an exaserbation!!!

L

lizlas

Guest
<P>Hi:</P>
<P>I have cf, but causing so much trouble is widespread bronchiectasis>>(BXIS)</P>
<P>signs that i know I have an infection are definatley , increased sputum and darker green, lungs feel hot , im very fatigued, lung pains and( hemoptysis, can be few tsps or tblsps... over several days..) and sometimes low grade temp...only 99.8 or 100.2F, but feels higher and breathlessness, chills and small sweats</P>
<P>the problem is my blood work indicators hardly elevate, thus the Dr. is reluctant to use IV ABX on me..</P>
<P>ESR normal is 20, I get maybe 25-40</P>
<P>CRP norm: less than 5....maybe 7.5</P>
<P>WBC.norm is 11 and under ..I mite get 7.5...(Im usually 4ish)</P>
<P> </P>
<P>My Dr. has sent me to an immunologist for a thorough work up as to why when I have an infection, blood work doesnt reflect it. but all tests show my immune system is working normally.</P>
<P>I have had this problem my whole life...is anyone else like this? and when you have infections what do your Numbers go up to?</P>
<P>thanks Liz</P>
 
L

lizlas

Guest
<P>Hi:</P>
<P>I have cf, but causing so much trouble is widespread bronchiectasis>>(BXIS)</P>
<P>signs that i know I have an infectionare definatley , increased sputum anddarker green, lungs feel hot , im very fatigued, lung pains and( hemoptysis, can be few tsps or tblsps...over several days..) and sometimes low grade temp...only 99.8 or 100.2F, but feels higher and breathlessness, chills and small sweats</P>
<P>the problem is my blood work indicators hardly elevate, thus the Dr. is reluctant to use IV ABX on me..</P>
<P>ESR normal is 20, I get maybe 25-40</P>
<P>CRP norm: less than 5....maybe 7.5</P>
<P>WBC.norm is 11 and under ..I mite get 7.5...(Im usually 4ish)</P>
<P></P>
<P>My Dr. has sent me to an immunologist for a thorough work up as to why when I have an infection, blood work doesnt reflect it. but all tests show my immune system is working normally.</P>
<P>I have had this problem my whole life...is anyone else like this? and when you have infections what do your Numbers go up to?</P>
<P>thanks Liz</P>
 
L

lizlas

Guest
<P><BR>Hi:</P>
<P>I have cf, but causing so much trouble is widespread bronchiectasis>>(BXIS)</P>
<P>signs that i know I have an infectionare definatley , increased sputum anddarker green, lungs feel hot , im very fatigued, lung pains and( hemoptysis, can be few tsps or tblsps...over several days..) and sometimes low grade temp...only 99.8 or 100.2F, but feels higher and breathlessness, chills and small sweats</P>
<P>the problem is my blood work indicators hardly elevate, thus the Dr. is reluctant to use IV ABX on me..</P>
<P>ESR normal is 20, I get maybe 25-40</P>
<P>CRP norm: less than 5....maybe 7.5</P>
<P>WBC.norm is 11 and under ..I mite get 7.5...(Im usually 4ish)</P>
<P></P>
<P>My Dr. has sent me to an immunologist for a thorough work up as to why when I have an infection, blood work doesnt reflect it. but all tests show my immune system is working normally.</P>
<P>I have had this problem my whole life...is anyone else like this? and when you have infections what do your Numbers go up to?</P>
<P>thanks Liz</P>
 
J

just1more

New member
I would have to say I'm on the same page as your Dr in that it looks like an immune response issue.

You are showing clear clinical signs of an issue; but your labs are iffy at best.

ESR & CRP are not specific to a given problem but represent that there is inflammation....yours shows a little but not what one would expect with an active infection.

Likewise, if you are in the middle of an exacerbation; your body normally would be fighting all-out; and a WBC of 7 is NOT fighting.

As for why, it looks as if your body has just decided to 'sit this round out'. We have had this issue with our son (last labs his WBC was a whopping 3.8 while clearly sick).

I wish I had a suggestion; but I would think at this point the Dr should probably treat based upon symptoms not labs. Labs are not 100% and every body is different. You know you are sick, and one of the benefits of being an adult is the ability to communicate when something is 'wrong'.
 
J

just1more

New member
I would have to say I'm on the same page as your Dr in that it looks like an immune response issue.

You are showing clear clinical signs of an issue; but your labs are iffy at best.

ESR & CRP are not specific to a given problem but represent that there is inflammation....yours shows a little but not what one would expect with an active infection.

Likewise, if you are in the middle of an exacerbation; your body normally would be fighting all-out; and a WBC of 7 is NOT fighting.

As for why, it looks as if your body has just decided to 'sit this round out'. We have had this issue with our son (last labs his WBC was a whopping 3.8 while clearly sick).

I wish I had a suggestion; but I would think at this point the Dr should probably treat based upon symptoms not labs. Labs are not 100% and every body is different. You know you are sick, and one of the benefits of being an adult is the ability to communicate when something is 'wrong'.
 
J

just1more

New member
I would have to say I'm on the same page as your Dr in that it looks like an immune response issue.
<br />
<br />You are showing clear clinical signs of an issue; but your labs are iffy at best.
<br />
<br />ESR & CRP are not specific to a given problem but represent that there is inflammation....yours shows a little but not what one would expect with an active infection.
<br />
<br />Likewise, if you are in the middle of an exacerbation; your body normally would be fighting all-out; and a WBC of 7 is NOT fighting.
<br />
<br />As for why, it looks as if your body has just decided to 'sit this round out'. We have had this issue with our son (last labs his WBC was a whopping 3.8 while clearly sick).
<br />
<br />I wish I had a suggestion; but I would think at this point the Dr should probably treat based upon symptoms not labs. Labs are not 100% and every body is different. You know you are sick, and one of the benefits of being an adult is the ability to communicate when something is 'wrong'.
 
L

lizlas

Guest
<P>Thanks Tom....</P>
<P>yes my WBCs are sitting every round out....very frustrating...yes after a long delay, we are finally doing that, but my response to the iv abx hasnt been great.  I had 5 weeks of Tazoscan sp. and really no improvemnt but yet culture said my bacteria is sensitive to it.</P>
<P>I got a very strange bacteria in 2001, that no one seems to have, bordettella avium/hinzii...</P>
<P>was supposed to be transient and leave...maybe if I got treatment for it right away it would have !!!</P>
<P>its a commensal flora in the throats of turkeys!! so I dont know how I got it.!!! i am around no fowl and it is not a NTM....</P>
<P> </P>
<P><A href="http://www.cysticfibrosis.com/profile/index.cfm/cgerhardt"><U><FONT color=#666666>cgerhardt</FONT></U></A>....posted tonight her 2 yr old sons WBC is 9,000.!</P>
<P> </P>
 
L

lizlas

Guest
<P>Thanks Tom....</P>
<P>yes myWBCs are sitting every round out....very frustrating...yes after a long delay, we are finally doing that, but my response to the iv abx hasnt been great. I had 5 weeks of Tazoscan sp. and really no improvemnt but yet culture said my bacteria is sensitive to it.</P>
<P>I got a very strange bacteria in 2001, that no one seems to have, bordettella avium/hinzii...</P>
<P>was supposed to be transient and leave...maybe if I got treatment for it right away it would have !!!</P>
<P>its a commensal flora in the throats of turkeys!! so I dont know how I got it.!!! i am around no fowl and it is not a NTM....</P>
<P></P>
<P><A href="http://www.cysticfibrosis.com/profile/index.cfm/cgerhardt"><U><FONT color=#666666>cgerhardt</FONT></U></A>....posted tonight her 2 yr old sons WBC is 9,000.!</P>
<P></P>
 
L

lizlas

Guest
<P><BR>Thanks Tom....</P>
<P>yes myWBCs are sitting every round out....very frustrating...yes after a long delay, we are finally doing that, but my response to the iv abx hasnt been great. I had 5 weeks of Tazoscan sp. and really no improvemnt but yet culture said my bacteria is sensitive to it.</P>
<P>I got a very strange bacteria in 2001, that no one seems to have, bordettella avium/hinzii...</P>
<P>was supposed to be transient and leave...maybe if I got treatment for it right away it would have !!!</P>
<P>its a commensal flora in the throats of turkeys!! so I dont know how I got it.!!! i am around no fowl and it is not a NTM....</P>
<P></P>
<P><A href="http://www.cysticfibrosis.com/profile/index.cfm/cgerhardt"><U><FONT color=#666666>cgerhardt</FONT></U></A>....posted tonight her 2 yr old sons WBC is 9,000.!</P>
<P></P>
 
J

JustDucky

New member
I have similar issues, the docs pretty much go by how I feel these days rather than to just look at lab when it comes to IV's and such. I actually have a low WBC, in the 3 range when I am well. When I am sick, it still is within normal range but elevated for me, like near 10. My Sed is also normal, but on the edge but I always feel inflammed. I have many of the same symptoms as you whenever I get sick, right down to the sweats and low grade temps.

Lately, it has been a bit different though. I have actually been getting high grade temps with exacerbations now, and without too much warning and my WBC's are abnormal, but then again, looking at my xrays, they show a whomping infection, more so these days than in the past so I am figuring that my immune system just has more of an overwhelming infection to fight. The last time I was admitted, I had a fever of 103 which is RARE for me and a WBC count of 3. When you are septic, you can have a very low WBC before it goes up because your body can't keep up with the immune response initially and uses up the WBC's faster than can be produced. AT least that is what my doc said...I was definitely septic with bacteria growing in my blood.

I wonder if your body is just cruising along as well, my doc suggested this of me too because he knew I was sick, but the labs would say I was okay. I do have borderline low IVIG , so maybe that is it. It wouldn't hurt to have your immunoglobulins checked out. Maybe you are deficient. Either way, the doc should listen to you, you obviously have symptoms whenever things are flaring up. You have lived with this for far longer than they have been treating you and you know your body. A good doc would respect that.

Good luck, I hope they figure it out

Jenn 39 w/CF
 
J

JustDucky

New member
I have similar issues, the docs pretty much go by how I feel these days rather than to just look at lab when it comes to IV's and such. I actually have a low WBC, in the 3 range when I am well. When I am sick, it still is within normal range but elevated for me, like near 10. My Sed is also normal, but on the edge but I always feel inflammed. I have many of the same symptoms as you whenever I get sick, right down to the sweats and low grade temps.

Lately, it has been a bit different though. I have actually been getting high grade temps with exacerbations now, and without too much warning and my WBC's are abnormal, but then again, looking at my xrays, they show a whomping infection, more so these days than in the past so I am figuring that my immune system just has more of an overwhelming infection to fight. The last time I was admitted, I had a fever of 103 which is RARE for me and a WBC count of 3. When you are septic, you can have a very low WBC before it goes up because your body can't keep up with the immune response initially and uses up the WBC's faster than can be produced. AT least that is what my doc said...I was definitely septic with bacteria growing in my blood.

I wonder if your body is just cruising along as well, my doc suggested this of me too because he knew I was sick, but the labs would say I was okay. I do have borderline low IVIG , so maybe that is it. It wouldn't hurt to have your immunoglobulins checked out. Maybe you are deficient. Either way, the doc should listen to you, you obviously have symptoms whenever things are flaring up. You have lived with this for far longer than they have been treating you and you know your body. A good doc would respect that.

Good luck, I hope they figure it out

Jenn 39 w/CF
 
J

JustDucky

New member
I have similar issues, the docs pretty much go by how I feel these days rather than to just look at lab when it comes to IV's and such. I actually have a low WBC, in the 3 range when I am well. When I am sick, it still is within normal range but elevated for me, like near 10. My Sed is also normal, but on the edge but I always feel inflammed. I have many of the same symptoms as you whenever I get sick, right down to the sweats and low grade temps.

Lately, it has been a bit different though. I have actually been getting high grade temps with exacerbations now, and without too much warning and my WBC's are abnormal, but then again, looking at my xrays, they show a whomping infection, more so these days than in the past so I am figuring that my immune system just has more of an overwhelming infection to fight. The last time I was admitted, I had a fever of 103 which is RARE for me and a WBC count of 3. When you are septic, you can have a very low WBC before it goes up because your body can't keep up with the immune response initially and uses up the WBC's faster than can be produced. AT least that is what my doc said...I was definitely septic with bacteria growing in my blood.

I wonder if your body is just cruising along as well, my doc suggested this of me too because he knew I was sick, but the labs would say I was okay. I do have borderline low IVIG , so maybe that is it. It wouldn't hurt to have your immunoglobulins checked out. Maybe you are deficient. Either way, the doc should listen to you, you obviously have symptoms whenever things are flaring up. You have lived with this for far longer than they have been treating you and you know your body. A good doc would respect that.

Good luck, I hope they figure it out

Jenn 39 w/CF
 
L

lizlas

Guest
<P>Hi Jen</P>
<P>Thanks for your response, I have had my immune globulins done many times....always normal...but what is IVGI..sumthing immune globulin ? </P>
<P>I was hoping my were low so thenyou get IV of immune globulins...but always ok...</P>
<P>Xrays never show too much, just the usuaul mucus plugging and BXIS everywhere!! yes finally started yesterday on Tygacil (tigecycline)...never had it before...very expensive, so just doing one week at a time and see how it goes....Amikacin helps the best of the abx we ve ytried, but ears and kidneys really take a hit, so Dr. doesnt want to use it right now...I need at least 4 weeks of it , 2 weeks just starts helping and by then creatine going too high and hears roaring and ringing...</P>
<P>thanks </P>
<P>liz</P>
 
L

lizlas

Guest
<P>Hi Jen</P>
<P>Thanks for your response, I have had my immune globulins done many times....always normal...but what is IVGI..sumthing immune globulin ? </P>
<P>I was hoping my were low so thenyou get IV of immune globulins...but always ok...</P>
<P>Xrays never show too much, just the usuaul mucus plugging and BXIS everywhere!! yes finally started yesterday on Tygacil (tigecycline)...never had it before...very expensive, so just doing one week at a time and see how it goes....Amikacin helps the best of the abx we ve ytried, but ears and kidneys really take a hit, so Dr. doesnt want to use it right now...I need at least 4 weeks of it , 2 weeks just starts helping and by then creatine going too high and hears roaring and ringing...</P>
<P>thanks </P>
<P>liz</P>
 
L

lizlas

Guest
<P>Hi Jen</P>
<P>Thanks for your response, I have had my immune globulins done many times....always normal...but what is IVGI..sumthing immune globulin ? </P>
<P>I was hoping my were low so thenyou get IV of immune globulins...but always ok...</P>
<P>Xrays never show too much, just the usuaul mucus plugging and BXIS everywhere!! yes finally started yesterday on Tygacil (tigecycline)...never had it before...very expensive, so just doing one week at a time and see how it goes....Amikacin helps the best of the abx we ve ytried, but ears and kidneys really take a hit, so Dr. doesnt want to use it right now...I need at least 4 weeks of it , 2 weeks just starts helping and by then creatine going too high and hears roaring and ringing...</P>
<P>thanks </P>
<P>liz</P>
 
J

JustDucky

New member
Glad they are trying something new for you. Tygacil is pretty hard core and seems to do a good job whenever the docs put me on it. Side effects suck though, I usually get really bad nausea with that one. As far as the IGG (that's what I meant, I would be treated with IVIG if they were too low), yes that is one of the immunoglobulins. I always seem to teeter on the fence with that one at the low end of normal for me. The immune system is so complex, I think it gets even trickier whenever we are dealing with chronic inflammation and infections.

Good luck with the Tygacil, I hope it does the trick and keeps you well for awhile <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn 39 w/CF
 
J

JustDucky

New member
Glad they are trying something new for you. Tygacil is pretty hard core and seems to do a good job whenever the docs put me on it. Side effects suck though, I usually get really bad nausea with that one. As far as the IGG (that's what I meant, I would be treated with IVIG if they were too low), yes that is one of the immunoglobulins. I always seem to teeter on the fence with that one at the low end of normal for me. The immune system is so complex, I think it gets even trickier whenever we are dealing with chronic inflammation and infections.

Good luck with the Tygacil, I hope it does the trick and keeps you well for awhile <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn 39 w/CF
 
J

JustDucky

New member
Glad they are trying something new for you. Tygacil is pretty hard core and seems to do a good job whenever the docs put me on it. Side effects suck though, I usually get really bad nausea with that one. As far as the IGG (that's what I meant, I would be treated with IVIG if they were too low), yes that is one of the immunoglobulins. I always seem to teeter on the fence with that one at the low end of normal for me. The immune system is so complex, I think it gets even trickier whenever we are dealing with chronic inflammation and infections.

Good luck with the Tygacil, I hope it does the trick and keeps you well for awhile <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn 39 w/CF
 
J

JennifersHope

New member
I have never been treated based on lab values. I almost never in my entire life have had a very high WBC.. only when I am on IV prednisone.

I will say I have been on IV antibiotics now for about six weeks ( I think) and just last week I started Amikacian last Friday, that drug kicks butt, in just one week I have noticed a big difference.. SO far after one week my kidney levels are good, which is good because I am going to be on this for one year....


I would not agree with treating based on labs as much as symptoms..and sputum cultures..... I am a huge fan of sputum cultures these days... since that is what ultimately decides what will work....


Hope you feel better
 
J

JennifersHope

New member
I have never been treated based on lab values. I almost never in my entire life have had a very high WBC.. only when I am on IV prednisone.

I will say I have been on IV antibiotics now for about six weeks ( I think) and just last week I started Amikacian last Friday, that drug kicks butt, in just one week I have noticed a big difference.. SO far after one week my kidney levels are good, which is good because I am going to be on this for one year....


I would not agree with treating based on labs as much as symptoms..and sputum cultures..... I am a huge fan of sputum cultures these days... since that is what ultimately decides what will work....


Hope you feel better
 
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