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View Full Version : Well this is quite the pickle...



Punkie
Apr. 7, 2012, 01:23 PM
After waking up covered in hives and with a swollen throat on Tuesday, I am officially allergic to every single class of antibiotics save ONE. And just my luck, the one that I'm able to take is ONLY available IV and usually requires a PICC or central line. Oh, and did I mention that I'm significantly immunosuppressed because I have autoimmune disease and take biologics? Yeah, there's that too. And it doesn't help that I seem to get UTIs if I breathe the wrong way. And those UTIs have a nasty habit of turning into pylonephritis which has an even nastier habit of turning into septicemia. Up until a few months ago, I was on bactrim prophylactically, but that's now not an option.

I've had a lot go wrong in my life medically, but I have to say that this - by far - is the scariest thing that's happened to me. I'm very glad I still can take monobactam, but who knows how many doses it will take for me to become allergic to that as well. And because it's administered intravenously, it puts me at a higher risk for having an acute reaction.

So this means that every sniffle, every sore throat, every cut, hell, every time I have sex or even kiss someone, puts me in serious danger. It wouldn't be quite as horrifying if I weren't on Actemra (an IV-administered immune mediator), but if I don't take my Actemra I'll lose significant joint mobility and likely my eyesight. No bueno. This also means no more steroids for acute arthritis or scleritis flares, no more blue cheese or brie, no more preparing my own meats...no more of a lot of things. And apparently I can never, ever have a cat. Or at least one that lives inside and requires a litter box.

I'm scared, I'm depressed, and I hate feeling like this. I always thought that it would be something impressive that finally clipped my wings...apparently it's just a single celled organism. :no:

Alagirl
Apr. 7, 2012, 01:38 PM
SO I guess you need to drink destilled spirits then...

many hugs for you.
Life is rotten some times and it's hard to see a silver lining anywhere.

AliCat518
Apr. 7, 2012, 01:54 PM
Man, thats terrible and very scary. I'm really sorry you have to deal with all of that. Good luck.

PalominoMorgan
Apr. 7, 2012, 03:02 PM
No words, but jingles from another health challenged CoTHer.

atr
Apr. 7, 2012, 03:11 PM
That would be very scary. But the single-celled organism hasn't got you yet...

LauraKY
Apr. 7, 2012, 04:19 PM
OP, get thee to an allergist to confirm what you're having is really an allergic reaction.

Now I'm going to tell you a story about my daughter. She went from very healthy in 7th grade to very sick in 8th. She had mono, pneumonia, sinus infections, then a UTI. She was allergic to every drug they tried. About 4 days after taking a new antibiotic, she would develop hives, itching, itchy throat, etc. It progressed to pylonephritis. She could only tolerate IV meds. This went on for a while. Her allergies got worse. She developed asthma. She had continued UTI's, pylo attacks, sinus infections. She had a vaccine for meningitis for college and ended up in the hospital. Things went from bad to worse. Two years later, 350K in medical bills (most paid by insurance, thankfully), she was diagnosed with Lyme and Babesia.

BTW, her allergist back in 8th grade said he was fairly sure it was bacteria die-off she was reacting to, not a true allergic reaction. But the other doctors didn't think it was worth pursuing.

Are you at risk for Lyme and co-infections?

Punkie
Apr. 7, 2012, 05:54 PM
OP, get thee to an allergist to confirm what you're having is really an allergic reaction.

Now I'm going to tell you a story about my daughter. She went from very healthy in 7th grade to very sick in 8th. She had mono, pneumonia, sinus infections, then a UTI. She was allergic to every drug they tried. About 4 days after taking a new antibiotic, she would develop hives, itching, itchy throat, etc. It progressed to pylonephritis. She could only tolerate IV meds. This went on for a while. Her allergies got worse. She developed asthma. She had continued UTI's, pylo attacks, sinus infections. She had a vaccine for meningitis for college and ended up in the hospital. Things went from bad to worse. Two years later, 350K in medical bills (most paid by insurance, thankfully), she was diagnosed with Lyme and Babesia.

BTW, her allergist back in 8th grade said he was fairly sure it was bacteria die-off she was reacting to, not a true allergic reaction. But the other doctors didn't think it was worth pursuing.

Are you at risk for Lyme and co-infections?

I thought I might have the same problem; it's called a Herxheimer reaction. However, I've been skin tested and RAST tested for all antibiotics that are available for testing...all positive. By virtue of those results, my immunologist is fairly certain that the others are true allergies as well. And even though I grew up in the NE, my lyme titer is negative. I'm also allergic to a whole slew of other medications (including most opiates, and ironically many drugs used in mediating the allergic response such as claritin and ranitidine.) so it's not a huge surprise that I'm having such trouble with antibiotics :( Every time I try a new medication or even a new food, there's always that *this might not go so well* moment in the back of my head.

I hope your daughter is okay!!

EqTrainer
Apr. 7, 2012, 08:56 PM
Geez Punkie. This sucks :( You must be so worried.

Jack16
Apr. 8, 2012, 03:49 PM
I am so sorry you have to go through this.

IneedanOTdayAlter
Apr. 8, 2012, 04:03 PM
That does not sound good..... I have a lot of antibiotic allergies also -- it makes doctors hold their heads every time I need one, but I am not quite on the scale that you are...

I have had very good luck taking a pill call Cranactin to prevent UTIs. I have NOT had any success with other brands/kinds of pills or by drinking (yuck) cranberry juice. I took Cranactin for several years, though I don't take it now, and it has been about 6 years since I've had a UTI.

MunchkinsMom
Apr. 8, 2012, 04:17 PM
Just wanted to send some jingles your way, and pray the doctors can find something that can work for you, and get you on the road to health.