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    Community Voices

    Oh lol

    Cardiologist says I have tachycardia, so that's fun.
    Also did a breath test and it turns out I have SIBO so I'm currently getting treated for that (icky tho).

    They did an abdominal ultrasound that showed mild enlargement of my liver (benign so my doc isn't worried about it) and a small non-obstructive kidney stone.

    It's been a while since I've been on antibiotics so I gotta ask - while I'm on antibiotics (doxycycline and flagyl), can I eat normally throughout the day (when my appetite exists)?

    #sibo #Tachycardia #HEDS #antibiotics #questions

    Community Voices

    Accomidations in chaos

    <p>Accomidations in chaos</p>
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    Community Voices

    That wasn’t a challenge!

    Dear life, when I asked if I could feel any worse, that wasn’t a challenge!

    The antibiotics definitely aren’t working, and the side effects have me feeling worse than ever before.

    How awful I’m feeling makes me want cuddles but I only saw my boyfriend yesterday so I’ll just have to wait it out :(

    #breathlessness #nausea #heartracing #Dizziness #lightheaded #antibiotics #SideEffects #Fever #Sweating #lossofappetite #illness #Infection

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    antibiotic haze

    being on antibiotics always screws with me but this round(s) have been worse. it doesn't feel like its going to end. lying down and sleeping are so destructive with EDS that i spend all day either napping or wigging out and crying and kicking everyone out.
    theyre all trying but im not making it easy.
    i just dont feel like they can understand having your whole body and abilities and pride taken from you all at once #antibiotics #ChronicPain #ChronicIllness

    Community Voices
    Community Voices

    I'm worried about bringing up a issue because I'm worried my doctor will just blame my weight rather than give a solution.

    I've have an ongoing external yeast infection for close to two months. Anti fungal creams are doing little to nothing. It's painful and smells honestly (sorry). It's moving around my body and is of course only in uncomfortable places. But I'm worried rather than just giving me and anti fungal prescription my doctor will blame my weight. I know this is because I took antibiotics too much as a child and messed up my whole system. But since its in well folds they'll blame my weight. I had a DDD chest when I was underweight that won't solve this issue. It also doesn't help right now. #Fibromyaliga #ChronicIlless #ChronicPain #antibiotics

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    Community Voices

    Has anyone with MCAS had ICU desensitization to an antibiotic before?

    I have numerous antibiotic allergies that have caused anaphylaxis, but the organisms I'm growing in my lungs are resistant to almost everything but what I'm allergic to. I just got out of the hospital on liquid Augmentin that I'm putting through my J-tube. it's our last choice now besides ICU desensitization which scares me a lot as i've very nearly died taking the meds we'll put me on. has anyone had desensitization and it's gone okay? I'm just nervous and want to prepare. #CysticFibrosis #antibioticdesensitization #antibiotics #Anaphylaxis #MastCellActivationDisorder

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    Community Voices

    One Week Into Hospital rant

    #CysticFibrosis #hospitalstay #antibiotics #PiccLine #Breatheeasy.
    just wanted to vent a little bit about how my hospital is going (not that anyone cares too much lol). so basically I’ve always been on the same meds for MRSA and Pseudemonous; vancomycin, tobramycin, and ceftazadime, and usually by now I’m feeling a bit better but I don’t??? oh yeah and I also tested positive for mycobacterium in August so they don’t know if that’s what’s causing my symptoms. I’ve just had a super bad wheeze and was coughing up blood over the weekend and ever since then I’ve sounded way way worse. also note that ventolin doesn’t work for me at all so they don’t believe it’s Asthma of any kind. I’m a little worried because I have PFTs tomorrow so I really, really hope they haven’t dropped or I’m going to be spending a few more weeks after next week here.
    another thing that bugs me a bit is that I’m on another ward this time because I’m growing mycobacterium so I needed to go into a negative pressure room and I’ve just found a bunch of differences that have bothered me a bit. no one comes to clean my room anymore which is pretty odd because they did everyday when I was on the “less infectious” floor with the MRSA and pseudomonas. also I found that the nurses really aren’t as educated with cf and I always tell them that I take creon right before I eat anything and it’s not like a strict time I must take them, but they don’t really listen to me. since I’ve been here vitals and everything has been good but they still come in every hour to check of oxygen is working when I’m not even on oxygen. so kinda weird and different, also not hating on nurses AT ALL! I’m so grateful and thankful for the hard work they put in and probably wouldn’t be where I am today.
    a little off topic but last night somehow all my dressing came off of my picc line? and it was just exposed cause it doesn’t have sutures or anything to keep it from falling out. luckily I realized and woke up and it didn’t fall out but I’m just worried about possible infection as i accidentally touched it when it was dark in the middle of the night and was definitely breathing on it.
    anyway that was kinda a long rant but I wanted to let it out :)

    Community Voices

    ‘Tis the season

    somehow I’ve let myself get sick. I’ve had a raging respiratory infection for 10+ days now. I’m on a second antibiotic now since the first didn’t axe it. I’m still struggling to breathe and having massive pain on the left side of my face. just crazy. I’m so annoyed. after starting ivig treatments I’ve been doing so well and this just feels like a huge step back. So much sinus pressure, blood and coughing.
    just complaining! yay flu season!
    #CommonVariableImmuneDeficiency #IVIG #sinusproblems #infections #frustrations #antibiotics

    Community Voices

    Lack of motivation

    I have many things I’m dealing with mentally, including losing my husband/soulmate in May 2019 after a14 month fight against Glioblastoma. But I was diagnosed with an inner and outer ear infection on Monday and put on HUGE antibiotics. While this is helping my ear...antibiotics sap every ounce of energy and motivation from me. I become a couch potato. I hate this and it leaves me empty and grouchy. Thank goodness I live alone with 4 cats. #Motivation #antibiotics #Livingalone #Grief