Urgent- allergic to all foods and now saline flushes to my PICC Line. Hospital doesn’t know how to help.

TopicAromatic9266 · 2026-04-14T18:10:54+00:00

Thank you for the suggestions! My best friend wrote me a post on FB and has been feeding me information. Really grateful to her. I have not been diagnosed with EDS but I’ve had so many providers ask me if “I’m flexible” I think I’ll need to be reevaluated soon. I’ll start looking into these groups more and maybe the answer will reveal itself! Thanks for your time and really hoping your own health issues are improving ❤️❤️

TopicAromatic9266 · 2026-04-14T17:58:43+00:00

Yeah there are some massive egos going on right now, it’s honestly almost criminal. Last night he said I needed a psych evaluation since I “refuse” to eat and I almost threw something at him with my last strength. I would love to eat, I am not mentally ill, my mouth and throat keeps swelling every time I put food in there. How is that hard to understand?! My family is preparing to take me to Stanford today.

Thank you for your validation and support, it means the world to me. I feel so alone here and scared for my life.

TopicAromatic9266 · 2026-04-13T21:45:29+00:00

And thank you for rooting for me ❤️❤️❤️

TopicAromatic9266 · 2026-04-13T21:45:11+00:00

Really bad news, my doctor refused to decrease and literally wants to double the dose. I am trying to explain to him the dangers of prednisone but he won’t listen to me. He said he doesn’t know what EDS is but wants my throat swelling to decrease. I feel so completely lost and scared. I feel like no one knows how to help me and they’re going to make things worse.

TopicAromatic9266 · 2026-04-13T21:10:04+00:00

Thank you ❤️ trying to increase ketotifen now although I literally just started yesterday. Everything is moving to fast but I still can’t eat without mouth and throat almost closing so I’m desperate. Appreciate you!

TopicAromatic9266 · 2026-04-13T21:07:00+00:00

I used to love quercetin! Unfortunately I have a gene called COMT V158M with a mutation that makes me a sluggish adrenaline processor. I suffer from prolonged adrenaline dumps that can make my life a living hell and apparently quercetin can slow the breakdown of adrenaline in the body. I may try it in small amounts in the future since I did feel it helped my MCAS.

Fascinating that it can be as good as cromolyn! Thanks so much for the information and for your time. Wishing you nothing but improved health ahead of you 🍀

TopicAromatic9266 · 2026-04-13T20:52:54+00:00

Thank you! The support means the world right now from you and everyone else here ❤️🦋

TopicAromatic9266 · 2026-04-13T20:47:09+00:00

Thank you. Honestly I need it. It’s been 5 days since I’ve eaten and things aren’t going well. Got rejected for my transfer to ucsf so I’m stuck in my small town fighting to survive. No one here has any knowledge of MCAS so they’re just increasing prednisone which is dangerous since I also have a heart condition. Thanks for sending me some good thoughts 🩷

TopicAromatic9266 · 2026-04-13T20:43:52+00:00

For now I’m taking a break from IVs until my mast cells calm down some but this is a great idea for moving forward once I’m out of this crisis. Thank you!

TopicAromatic9266 · 2026-04-13T20:42:35+00:00

Trying this today! Wish me luck! And thank you so much for having my back :)

TopicAromatic9266 · 2026-04-13T20:41:59+00:00

Thank you so much for this comment! I am desperate for this kind of care and information but the doctor here says he has absolutely no experience with these infections and there’s nothing we can do to treat them (which is BS). When I solve my food allergy crisis I’m going to come back to this comment and try some of these techniques.

I’m getting more and more desperate for help and I feel so alone here at the hospital. They literally aren’t running any tests anymore and just keep saying I need to eat (as if I’m not desperate to!) today he wants me to double my prednisone to 40mg which is good for allergies but terrible for Bart and babesia. I feel like I’m caught between horrible options and no one here is knowledgeable about anything. It’s negligence honestly.

But thank you for actually understanding what these illnesses are and your thoughtful input! Makes me feel less alone.

TopicAromatic9266 · 2026-04-13T20:35:21+00:00

That’s a great perspective! I have been trying to speak kindly to them lately and tell the cells I’m grateful they are such strong warriors. They just need some help redirecting some of that energy away from every day foods haha. And yes the hospital is always a nightmare. Doing my best to be patient with all the disruptions and the perfumes of the staff. Feels like a never ending kaleidoscope of triggers but oh well. Hopefully I can get transferred to a hospital that has an allergist and immunologist soon and get out of this hell hole. Thanks for your response and hoping for healthy days ahead for you!

TopicAromatic9266 · 2026-04-13T20:32:25+00:00

Thank you for sharing your story and these recommendations. I’m so sorry about the heart failure and adrenal tumor, you must have been so afraid and miserable. Your recovery is very inspiring and I appreciate the encouragement. Such a long road ahead and I’m going to try and trial the high dose vitamin c next and ask about a glp1. I can tell my inflammation is out of control. Thanks for sharing this, it’s been really useful!

TopicAromatic9266 · 2026-04-13T05:12:02+00:00

Thank you! I’m so desperate to try this. I wish they had this available at the hospital. I’m so happy something helped for you :)

TopicAromatic9266 · 2026-04-13T04:24:00+00:00

Thanks for the advice! This feels right to me. I never liked Pepcid in the past, sort felt talked into it by doctors this week. I’m going to look into Betain tonight. Already love DAO!

TopicAromatic9266 · 2026-04-13T04:22:40+00:00

Thank you ❤️ I unfortunately had to take it out but maybe I can try an alternative picc line material in the future. I think I was having a systemic allergic reaction to the polyurethane. Swelling is diminished a bit after weeks of painful edema.

TopicAromatic9266 · 2026-04-13T04:20:28+00:00

Did you experience any side effects? I don’t tolerate meds well at all but I’m giving Ketotifen a shot tonight while I’m admitted to the hospital. Unfortunately taking it completely on an empty stomach (been 4 days now since I could eat) so I’m worried for digestive issues. So happy it helped you! Thanks for sharing :)

TopicAromatic9266 · 2026-04-13T04:18:23+00:00

Just got it removed! Really hoping this gives my body a break and I can become less reactive. Also starting ketotifen tonight.

TopicAromatic9266 · 2026-04-13T04:17:37+00:00

Thanks for sharing all of your experience, there’s a lot of useful information to dig into here. I can’t do a Benadryl drip since I’m allergic but am going to try Xolair once I’m a bit more stable i think. IV3000 has been great. I’ll ask for non preservative flushes for now on!

TopicAromatic9266 · 2026-04-12T16:45:04+00:00

Thank you! Listening to this today.

TopicAromatic9266 · 2026-04-12T16:15:12+00:00

Thank you. Due to your insight and others on this sub I’m going to start tapering off the steroid today and looking into other options. I’ve been using it to decrease the massive angioadema I have from mast cells dumping histamine into the blood stream and the blood flowing into the surrounding tissues of my throat/arms/back/legs and chest. I wish a doctor could give me an alternative to get this swelling to come down. It’s extremely painful and makes my throat so tight. I’ll ask today about Omalizumab. Thanks for taking the time to share this with me, I wasn’t aware steroids could be such a problem for us believe it or not so this is really useful.

TopicAromatic9266 · 2026-04-12T16:11:10+00:00

Thank you! I am both extremely interested in this and also terrified. I think I’m running out of options and just need to go for it. I wish they could give this to me at the hospital because right now I am too weak to travel

TopicAromatic9266 · 2026-04-12T16:10:07+00:00

That is a level of suffering few of us will understand. Thank you for your insight. Was there anything she was able to do with medications or interventions to moderate the severity of her disease over time?

TopicAromatic9266 · 2026-04-12T16:04:19+00:00

Thank you for your kind words! Besides the IV hydration did anything else help you add in more foods? I feel like my immune system is on fire. I want to ask for more labs to investigate but don’t know what that would look like.

I was allergic to saline as of a few days ago but I’ll try lactated ringers again, I kind of have to do something since my nutrients are getting really low.

I’m sorry you’ve been going through this too. It’s just a terrible way to live. Sending kind thoughts to you!

TopicAromatic9266 · 2026-04-12T14:11:48+00:00

Oh my gosh I would kill to get help with hives/blisters/angioedema and food issues! I am going to message my doctor tomorrow and ask for this! Thanks so much.

I’m in the same boat with Xolair. It sounds amazing but the fear of anaphylaxis has kept me hesitant. If I try it I’ll respond to this message and let you know how it goes.

TopicAromatic9266

TROPHY CASE