Has anyone else had antibiotic sensitivity?

Posted by notnancy88 @notnancy88, Apr 25 4:43pm

I have had it done twice since spring 2023. It is surprising that suddenly antibiotics that you were sensitive to before no longer have that same sensitivity. I’ve recently learned that AZRITHOMYCIN ( sp) and MOXIEFLOXICIN is useless when trying to treat something that I have been diagnosed with.

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Yes!!! And the reaction was horrible.. penicillin in 2000 .. hives and on steroids for 2 years..and now...I took a Levaquin 500mg (I usually took a 250) and it blew a hemorrhage in my stomach in Dec 2019.. that healed.. but now am allergic to soo many!! When I had pneumonia, the hospital had to special order antibiotics.. the nurses said "we've never seen these used"..all I can take now is Cipro or Flagl.. gotta be real careful and make sure I don't get sick and need them.. they are scary.. !! Since then I've had so many digestive issues.. and once got down to 98 lbs.. which they've fixed and now I'm over weight.. whew!! Please be careful..I carry a "book".. 1 inch binder with me if I have to go to the hospital..in a car or ambulance. Has all my info in it.. contacts, religion, allergies , surgeries.. Primary care dr and other drs.. in case I am unable to talk.. I'm 72 and have lots of sensitivities..mostly I just PRAY!! Live very rural and health care is not so good here.. example I called an ambulance and asked if I could have a zofran.. she said all I am allowed to give you is this "barf bag"..and I asked if I could administer myself one out of my wallet...good grief!!

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I can relate to this set of problems. In the past I could take any antibiotic with the normal reactions--diarrhea, loss of appetite. In 2019 I was diagnosed with MAC and pseudomonas. I was started on the big 3. The pulmonary doctor I had did not know how they should be taken and the many options for dosing. He had me take all of them first thing in the morning on an empty stomach. I lasted six weeks and lost 15 pounds--I'm 5'7" and only weighed 130 at the time. I had nausea, no appetite and diarrhea. He finally told me to stop taking them. He sent me out the door saying, "I don't think I can help you." No referral, nothing.

Cipro and levaquin was good for the now colonized pseudomonas until I began having reaction to them. This Thursday I'll go back to the hospital for my 3rd PICC line so I can get a round of IV antibiotics--usually ceftazidime. Nothing is on the horizon that will cure the pseudo but we just knock it back. Once that 2 weeks of IV is completed we will try Cayston inhaled antibiotic. Praying I can tolerate it. Finally had to give up on Tobramycin after 6-7 years of effort.

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Profile picture for fdixon63 @fdixon63

I can relate to this set of problems. In the past I could take any antibiotic with the normal reactions--diarrhea, loss of appetite. In 2019 I was diagnosed with MAC and pseudomonas. I was started on the big 3. The pulmonary doctor I had did not know how they should be taken and the many options for dosing. He had me take all of them first thing in the morning on an empty stomach. I lasted six weeks and lost 15 pounds--I'm 5'7" and only weighed 130 at the time. I had nausea, no appetite and diarrhea. He finally told me to stop taking them. He sent me out the door saying, "I don't think I can help you." No referral, nothing.

Cipro and levaquin was good for the now colonized pseudomonas until I began having reaction to them. This Thursday I'll go back to the hospital for my 3rd PICC line so I can get a round of IV antibiotics--usually ceftazidime. Nothing is on the horizon that will cure the pseudo but we just knock it back. Once that 2 weeks of IV is completed we will try Cayston inhaled antibiotic. Praying I can tolerate it. Finally had to give up on Tobramycin after 6-7 years of effort.

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@fdixon63 I am like you. I had nocardia pulmonary. Did 2 antibiotic for 7m . Then got mac since I have bronchiactasis. I now cant take bactrim or anything with sulfa. I then developed lung cancer . Had lung resection. . Grew psuedanomas A . Been on everything you can imagine. I tried cipro but developed every rare side effects. By the way once my lung was resected. Mac gone . But then the PA grew. Can't take leviquin either. Rare side effects. Ive been on IV midline just recently with cefipime. 2 weeks. White cell count very low now. Not showing signs of improving . It was my second time on it. So im thinking I have to find a new one soon. Before I get that sick again. I just try to stay positive . Repeat lung clearance. Do exercise do my inhaled sodium 3 and 7 % . Im still here. Ill redo scans in a few months to watch for all the chronic infection in me as well as size of nodules a d lypth nodes. Pray a lot .

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Profile picture for smc17 @smc17

@fdixon63 I am like you. I had nocardia pulmonary. Did 2 antibiotic for 7m . Then got mac since I have bronchiactasis. I now cant take bactrim or anything with sulfa. I then developed lung cancer . Had lung resection. . Grew psuedanomas A . Been on everything you can imagine. I tried cipro but developed every rare side effects. By the way once my lung was resected. Mac gone . But then the PA grew. Can't take leviquin either. Rare side effects. Ive been on IV midline just recently with cefipime. 2 weeks. White cell count very low now. Not showing signs of improving . It was my second time on it. So im thinking I have to find a new one soon. Before I get that sick again. I just try to stay positive . Repeat lung clearance. Do exercise do my inhaled sodium 3 and 7 % . Im still here. Ill redo scans in a few months to watch for all the chronic infection in me as well as size of nodules a d lypth nodes. Pray a lot .

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@smc17
When you and fdixon do the IV to knock back the pseudo, does it work and for how long? Mine just comes back quickly. So far only tried Meropenem three times. Cayston is usually easy for most people. But I react to it. I have yet to try it with Levabuterol first to see if that helps.

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@notnancy88 are you referring to susceptibility, rather than side effects? I have read that resistance does happen with long term antibiotic use, so what you may have shown susceptibility to at the beginning of treatment can and does (for some) change over time. Also, some strains are resistant to certain drugs, so you could have a new strain of something you were infected with before that isn’t susceptible to the same drugs you treated with last time. That’s why it’s so important to do susceptibility testing, we shouldn’t make assumptions based on past experiences.

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I worded my post incorrectly and left off the word testing.

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Profile picture for irenea8 @irenea8

@smc17
When you and fdixon do the IV to knock back the pseudo, does it work and for how long? Mine just comes back quickly. So far only tried Meropenem three times. Cayston is usually easy for most people. But I react to it. I have yet to try it with Levabuterol first to see if that helps.

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@irenea8 have you tried cefipime IV ti knock it back . ? So far im going on 2 months of being fairly well since I came off this. Was very sick prior.

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Profile picture for smc17 @smc17

@irenea8 have you tried cefipime IV ti knock it back . ? So far im going on 2 months of being fairly well since I came off this. Was very sick prior.

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@smc17
The only IV I have tried is Meropenem. Years ago I got C Diff from an oral Ceftin. It is in the same class as the Cefipime so I would be wary. My GI is very reactive. But I might consider it. Thanks for letting me know. 2 months is sure longer than my one week of being better!

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I was on azythromycin, rifampin, and ethambutol, Mon-Wed-Fri for 2 weeks in September 2025 when my cough completely went away. Mind you, I'd had this cough since ~2015 and it got much worse over the past 2 years. In December 2025, the doc stopped Ethambutol (didn't think it was worth the side effects, since I made such progress). I've been on just the other two, same schedule, since then--so far, for 7 months. He wants me to stick with this until September 2026 (but I haven't spoken with him about the new symptoms--next appt. is about 6 weeks away).
The past few weeks, my GI system has been giving me a lot of trouble (gas, nauseam, etc.), I have lots of body aches, I'm hot and cold... Now I know correlation doesn't mean causation--could be because I'm eating gluten (gave it up during Lent), or it could be hormones, or it could be lack of sleep, or it could be sloppy timing of when I take the antibiotics, due to my schedule of late. Also, my other meds don't seem to be working as well, which could point to poor absorption. I'm feeling too tired and to overloaded with work (full time) and school (accelerated doctorate) to go to the doctor (and my PCP justs retired). I take probiotics, when I remember to do so, but I read an article by a GI doc yesterday (in the WaPo) that said probiotics may not be a good thing (the article was about IBS, not antibiotics) and to focus on soluble fiber.
I think I just came here to whine - thanks for listening, but if this resonates with anyone... you're not the only one!

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Profile picture for irenea8 @irenea8

@smc17
When you and fdixon do the IV to knock back the pseudo, does it work and for how long? Mine just comes back quickly. So far only tried Meropenem three times. Cayston is usually easy for most people. But I react to it. I have yet to try it with Levabuterol first to see if that helps.

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@irenea8 - Hi. After doing 2 weeks Ceftazidime via PICC my symptoms improve but it only lasted a few months. The last time I did not have any inhaled antibiotic afterwards. This time we'll try Cayston. Is Merophnem an inhaled?? Just trying to stay hopeful.

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