Recurring Fevers and shortness of breath

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MullMuzzler

New member
Hey everyone Its been a long time since I have posted! Wanted to ask around and see if anyone has been through this? Sorry if these reads like a mess!

I have had a low grade fever since Christmas of 2014, Anything above 97.7 makes me feel like total crap! They usually capped off around 100.5

These came twice a day... morning and night, along with body aches, shortness of breath, hot flashes in my face.

Ibuprofen over the counter stuff would work for a while then i had to keep taking more and more....finally went into the ER. I explained to my
CF doc and his team whats been going on...so they did the usual batter of tests Chest x-ray, full panel blood work, sputum culture, urine test, and flu test.


X-ray was clear , blood work was perfect, sputum was the same as it was a few months prior no new bugs growing, ( I culture MRSA and Pseudomonas)
urine test was clean not dehydrated with good sodium level, and flu test also was negative. After a day in the hospital they send me home on Cipro/bactrum combo witch did the trick on it for 14 days, all symptoms went away.


5 days off the meds it came back...They put me on for another 21 day dose....felt great again all symptoms stopped. 5 days later again....it all came back.

I took 30 days off of the antibiotics and wanted to see what would happen and if they might just go away....but nope ended back in the ER.. Was admitted 6 days...let the tests begin. Blood work came back normal other than my WBC ( white blood count ) was high at 17. witch really means 17,000 showing I had an Infection somewhere.

X ray came back normal
EKG came back normal
Heart scope scan back nornal
CT scan of stomach and abdomen back normal
CT scan of chest came back normal
Urine test was normal
sputum culture normal nothing new once again

Chest sounds pretty clear all things considered having CF for 33 years, and a FEV-1 of around 50%


They found nothing wrong and sent me home on IV with a picc line. Zoysin for 21 days along with Cipro and bactrum. Felt Great, all symptoms stopped.


5 days off these guess what...she's back!! right back to square one. Just started Prednisone 10mg for 16 days to see if that helps in anyway


Also my PFT after the IV meds shows a 10% decline I am now at 40% even. My heart rate through out this entire deal ranged anywhere from 94 at rest to 150 at rest. And my 02 is at 94 at rest and on and off desats down to 88 when I do heavy walking but only when I was sick.



Any help would be great!!! Or advise, anything!


Thanks
 
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imported_Momto2

New member
I presented with similar symptoms with I was developing CFRD. High WBC too, SOB, serious fatigue, low-grade fever, no obvious infection, oral and IV antibiotics didnt really seem to help much, nothing in sputum to explain it, and a big drop in FEV1 in short time and a big drop in sats. My A1c presented as relatively normal, but hourly blood sugar testing showed I had a pretty serious problem that required immediate insulin. What's your status on this?
 
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Melissa75

Administrator
Maybe a bronchoscopy to look for NTMs? My experience with the fevers and getting sick again 5 days after stopping antibiotics was mycobacteria. And it didn't always show up in cultures. Another possibility is anaerobic bacteria from your stomach--I was told that it doesn't survive the culture process.
 
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MullMuzzler

New member
Okay..Thanks for telling me your story!! It would be nice to find the problem! I will ask him about my A1c and ask for an hourly blood sugar test as well! Did you end up getting CFRD? And do you have to take insulin now too?

Thanks again!
 
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MullMuzzler

New member
They were looking into have that Bronchoscopy next...I really think its a good idea too...I have been reading about mycobacteria and it causing tons of problems.

Was also reading up on the anaerobic bacteria and looks like like people who take Flagl it seemed to help!


Thanks for the advice!! I am getting all this done ASAP!
 
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welshwitch

Guest
I had a lot of the symptoms you describe back in February. However, the x ray looked horrible (similar to serious pneumonia) , my bloodwork came out wonky and my heart rate was totally off. I had a really bad respiratory infection. For me 2 weeks of IV antibiotics did the trick. Really hope you find a solution -- it's the WORST!
 
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welshwitch

Guest
Also, do your symptoms include no appetite and weight loss? I lost 10+ pounds during that ordeal and getting my appetite back was a godsend! (Trick: 3 Frozen 3 Musketeers bars per day = quick calorie boost).
 
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Beaz

Guest
Wow, your symptoms sound just like my son's, who is 17. He's already on insulin, with well controlled sugars , has been taking anti-fungals for a long time and has tested negative for mycobateria. Also uses O2 at night.
For many years he's been on a rotating schedule of oral and inhaled abx, at least 3 at a time, only going off orals for IV. He cultures stenotrophomonas, pseudomonas and MRSA, also two fungi. The MRSA is the persistent problem and when IV vanco stopped being effective we had to lobby hard to try some much newer IV, then oral abx.

For him, the key is fighting the MRSA as aggressively as possible. Go through all the usual stuff for MRSA, but know that there is something beyond vanco and linezolid if you need it.

Good luck with this frustrating problem and let us know how you fare!
 
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jricci

Super Moderator
I went through something very similar as well. My low grade fevers, joint pain, fatigue started to be a persistent, almost daily, issue for me a couple of years ago. My fevers usually occurred around the same time of day (early afternoon) and I would get the chills. They would rarely go above 99.8. I also had a complete workup including seeing an infectious disease specialist. My white count and inflammatory markers were elevated. CT scan and multiple sputum samples to check for mycobacterium were negative. I also had a second opinion from another CF clinic just to make sure nothing was being missed. My OGTT was borderline; but my glucometer readings at home were fairly normal, with the occasional high/low.
It was decided that I didn’t need insulin, except when I’m on prednisone. Looking back at my cultures, my guess is that MRSA was the culprit. I’ve cultured it occasionally for years; but once I started culturing it consistently, I started having these issues. Inhaled Vancomyacin is an option for MRSA. Unfortunately, I have very reactive airways, and I wasn’t able to tolerate it. But you may want to consider it. It can be cycled one month on and one month off, in addition to inhaled antibiotics for your pseudomonas. I’m on one one month of colistin/one month of Cayston for pseudomonas coverage. I’m also on high dose Ibuprofen. This was really started in an attempt to control the inflammation in my lungs, but it has had the added benefit of helping my fevers and joint pain. I’m on 1200 mg twice a day. But I would definitely run this by your doctor before starting anything on your own. I had to have ibuprofen levels drawn to make sure I was within the desired therapeutic range. There’s a narrow window for the correct dose. Too low of a dose can contribute to inflammation. Although, I know it’s just masking my symptoms of fever and joint pain and not getting to the root of the problem, it has really made me feel much better. I hope you get some answers and start feeling better soon.
 
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jamest

Guest
Do a CT scan of your sinuses ASAP. I was having recurring low-grade fever, we threw everything in the book at it, but only prednisone was able to reduce the fever. Turns out my sinuses were 100% full of aspergillus. The ENT drilled new accessways into my maxillary sinus, making it easier to flush everything out, and the fevers haven't been back.
 
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Smirizzle

New member
Wow! I too have had similar issues. Started an antibiotic 2 weeks ago, 3 days in I got worse. Low-grade fever comes and goes. I'm with Jamest and think there is an unwanted colony in there, my ENT wants to culture sinuses. I have had intermittent issues like this where it seems I have some sort of infection but everything stays relative normal, except extreme fatigue. This time however I have a bacterial infection on my face at the entryway to my nose, probably because I am too aggressive wiping. (There was just so much gunk draining from my nose for days!) My PCP gave me oral and topical antibiotics and told me to call my CF center and the ENTs. They wanted me to finish the round of antibiotics to see if it would take care of it all but it hasn't. I am getting my first ever IVIG: intravenous immunoglobulin therapy tomorrow.

I have been sickly all my life but this year I have developed a different infection (sinus, upper respiratory, both) every other week. It is getting frustrating. Especially as I am a manual physical therapist. This really doesn't put me in any kind of mood to touch other people!(NOSEPICK)

Hope they get you the right treatment. I will try to post if the IVIG seems to help fight infection faster.
 
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MullMuzzler

New member
Thanks so much everyone for your story's, advice, and ideas! This has been a big help and a great place to start. I'll be seeing my doc soon and gathering a list of the things everyone has discussed. Very great full to e very own
 
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