Has anyone else had a period of time where they keep getting sick after antibiotics? It's been about 5 months now and I've been on iv antibiotics 4 times and I keep getting sick again about a week and a half after antibiotic discontinuation. It seems like each time the antibiotics work a little less efficiently as well. Has anyone one else gone through this? If so, what eventually worked? Or am I going to die soon probably? My pfts are around 50% I'm 24 and I culture PA and MRSA.
Keep getting sick
- Thread starter Datnewboy
- Start date
Please don't think your going to die that's highly unlikely at your age and at least your pfts are above 30 so that's good 
there's so many antibiotics out there maybe you and your doctors need to review what antibiotics u should be put on? What's your oxygen levels like and are you on any nebulised antibiotics?
there's so many antibiotics out there maybe you and your doctors need to review what antibiotics u should be put on? What's your oxygen levels like and are you on any nebulised antibiotics?Please don't think your going to die that's highly unlikely at your age and at least your pfts are above 30 so that's good
Took cayston.. Diddnt do a thing.. Tried inhaled vanc.. Coughed up a lot of blood.. Now I'm back on Tobi ..Tobi has never helped my cough.. And my oxygen levels are like 96 to 97
Ok so your oxygen is quite good, u seem similar to me I used to be on antibiotics every month or so but oral not ivs and doctors started me on Zithromax are u on that? It's basically an oral antibiotic that I take 3 times a week and it seems to help a lot if your just on Tobi sometimes it's best to do alternate months like a month on Tobi month on a different neb? and hypertonic saline is also good although that tends to make me cough blood when I'm on it for a long time :/
if your just on Tobi sometimes it's best to do alternate months like a month on Tobi month on a different neb? and hypertonic saline is also good although that tends to make me cough blood when I'm on it for a long time :/Yeah it sucks. It is the rebound effect. What is not killed comes back with a vengeance.
I find that I cut out sugar and dairy that helps. Once I finish IV anti biotics from day one I work hard on the vest and breather etc.
Sometimes you are in a cycle that is hard to break. Happens to me too.
I find that I cut out sugar and dairy that helps. Once I finish IV anti biotics from day one I work hard on the vest and breather etc.
Sometimes you are in a cycle that is hard to break. Happens to me too.
Well this has never happened to me in the past. Antibiotics have always cleared me up for a while. When I finish my ivs I lift for an hour every day and do either treadmill or jump rope for 30 minutes. Nothing seems to keep the infection from racing back. So you think it just takes time sometimes?
alfreidasBuffy
New member
It has happened twice in my life where I had a really hard time for a few years at a time. First time was the years leading up to 5 and then I was fine. Went without antibiotics until high school and then right after high school for 3 years i went back down. It's easy to get discouraged but don't sometimes it just takes experimenting with different meds or different treatments to get out of the rut. Both times my health really plummeted to the point where i couldnt do pfts anymore. It takes just ONE medication to make the difference sometimes it's just finding it that's hard! Now I'm back to normal. Just dont assume you'll be stuck there just keep you head up and working your tail off!
It has happened twice in my life where I had a really hard time for a few years at a time. First time was the years leading up to 5 and then I was fine. Went without antibiotics until high school and then right after high school for 3 years i went back down. It's easy to get discouraged but don't sometimes it just takes experimenting with different meds or different treatments to get out of the rut. Both times my health really plummeted to the point where i couldnt do pfts anymore. It takes just ONE medication to make the difference sometimes it's just finding it that's hard! Now I'm back to normal. Just dont assume you'll be stuck there just keep you head up and working your tail off!
Yea.. I'll keep that in mind. It certainly helps to know that others have gone through this.
W
welshwitch
Guest
Hello!
Nothing to add here but I hope you feel better real soon. Stay strong!
Nothing to add here but I hope you feel better real soon. Stay strong!
nhaggard07
New member
I'm 24. Past few years I've really took a dive in health. Pts are 40s oxygen is 90 and falls to low 80s just from walking. I get completely out of breath within 30 feet of carrying something heavy, have to sit down and gasp for a few mins. It's really been effecting me psychologically. My girlfriend of four years moved out last month because I'm just not the same person anymore. It was a mutual decision because I felt bad not giving her what she needed. Don't want to throw a pity party for myself, just going through rough times with no one to really confide in who understands cf like we all do. I have a clinic visit next week with a diabetes screening, only explanation drs can think of for such massive rapid decline. I've told my clinic of my depression but they insist I must see a psychiatrist for proper diagnosis and medication. Which makes sense, I just don't have the means to pay for that as insurance will not.
I assume you'd get a referral to a pyschiatrist from the clinic, and insurance still won't cover? Usually the issue is insurance not paying for, or only paying for limited, pyschologist / talk therapy visits. Pyschiatrist and meds are often the easy thing to get covered. Definitely ask your team again at your next visit. Also, you may be able to be seen by someone who charges on a sliding scale based on economic means. Your visit out of pocket may be the same as what your copay would have been. (I realize that feeling awful--financial paperwork is the last thing you want to do, but what about the social worker on your team? Can that person help?). Finally, I am so sorry your health and breathing are so compromised and your relationship ended. That breaks my heart. Sending you hugs.
Have you been on iv antibiotics? Do you get a bad cough in the mornings? Do you check your blood sugars? I often have wondered if diabetes was the underlying cause of me not staying well after treatments but I check my blood sugars and they are normal.. So I honestly don't know what is going on and I recently found a doctor who is much more proactive at finding the underlying cause of my symptoms.. I observed that my old doctors kind of just put me on the back burner and each time I've gotten sick in the past 5 months they just tell me to go to the hospital and they put me on the basic cf protocol Iv antibiotics..
lilmac1177
New member
do you get sputum cultures regularly to see what you're culturing and what antibiotics are sensitive/resistant? have you ever had a bronch done to maybe see if there's something being missed thru regular cultures???
Yea I do.. Never gotten a bronch though.. They claim the antibiotics I take are effective based on my cultures..
This is happening because your "suppressors" (i.e. oral antibiotics and/or nebulised antibiotics) aren't working as well as they used to between IVs.
Basically you need to control and suppress the pseudomonas between IVs (I'm guessing you culture pseudomonas).
This is something you'll have to get used to as your CF progresses and your pseudomonas starts to become resistant to antibiotics: scrabbling round to find the next new thing that works!
And don't expect your doctor to figure it out either.
I continually "suggest" why don't we try this or that from reading stuff on these forums etc.
Stuff I take:
Azithromycin (zithromax), initial boost I felt wore off after about 6 months, but effects are supposed to be long term so I keep taking it.
I take ciprofloxacin at least one 2 week course between IVs. My bugs become resistant but then become sensitive again so I do get some benefit from it.
Nebulised Tobramycin and colomycin: stopped working for me so I had to find something else.
Been using TobiPodhaler for 2 years: worked really well for about a year, now just works okay so keep using it.
Started Cayston 2 months ago: Huge improvement so far. Would recommend.
Colobreathe (dry powder colomycin/colistin): Has just become available, so am waiting to try out in the coming months, although am holding in reserve because Cayston working nicely.
The other thing I find helpful is to switch IV antibiotics.
One good clear out with a new combination of IVs that really work can set you up for a pleasant month or three between IVs.
e.g. switch ceftazidime to cefepime. Switch Colomycin to Tobramycin. Switch Tazo/Pip to Aztreonam etc.
lilmac1177
New member
the bronch should be able to tell if there's something else down there, i would think about suggesting one be done in case they're missing something ... also, not everyone who has CF cultures Pseudo all of the time! i have cultured it but have also been free of it for over two years now
I have switched iv antibiotics a few times this summer. Each time I get better but I immediately get sick when I come off of them. There has to be an explanation since I have only been on iv antibiotics twice in 24 years and now I've been on them 4 times since June. I am on zyvox and ivs right now , about to wrap up a two week course and I literally have coughed about twice a day. I just hope I don't get my line pulled and quit the zyvox only for this infection to come back again.