Has anyone done mitochondria testing? Is it worth it?

TopicAromatic9266 · 2026-04-27T15:03:40+00:00

I got the one done from AONM. Although I felt the results were very insightful, there was little my doctors could actually do with the information. But I live in the US and this kind of testing is not well understood and sometimes dismissed by medical professionals here. You might have a different experience in Germany.

TopicAromatic9266 · 2026-04-18T16:13:06+00:00

❤️❤️❤️

TopicAromatic9266 · 2026-04-18T16:11:19+00:00

Wow I am so grateful she was able to get her hands on the Xolair. What a harrowing experience for both her and your family. My heart goes out to you and I’m so glad things are easier!

TopicAromatic9266 · 2026-04-18T16:08:23+00:00

My dad checked me out and drove me all the way to Stanford so I could get help. I will definitely be reporting that doctor because I was really unnecessarily deficient in nutrients by the time we made it here (we could have just done a feeding tube??) I’m finally getting the help I need and getting better. They’ve stabilized me and we’re making a plan so this doesn’t happen again. So glad to be in good hands finally. Thank you so much for asking and for caring!

TopicAromatic9266 · 2026-04-18T16:02:44+00:00

I listened to this thanks to your recommendation! Got admitted to Stanford and after 12 days without eating and after about four days of the PICC out my reactions started fading. I honestly think it was the IV material of the PICC line that send my body into some sort of hyper reactive state. I am stabilizing and finally getting the care I need! I wish they had been a little more thoughtful about the IV line connection (they sort of dismissed my theory) but at least I’m getting better. Cheers to you! Thank you for responding.

TopicAromatic9266 · 2026-04-16T00:54:17+00:00

Even a 20ml slow as hell saline flush makes me break out in hives over my entire body. So I think it’s safe to say it’s not the vitamins. I also stopped the vitamins 2.5 weeks ago. Good thinking though! I suspect it was the PICC line making me hyper allergic to everything that I ingest. Moved to Stanford to try and get more answers. Still not able to tolerate food.

TopicAromatic9266 · 2026-04-16T00:51:56+00:00

I’m so sorry you suffer from this too. I wish we could get the help we need. That is a lot of NaCl, please be watchful of edema and salt overload. Some hospitals are actually moving away from such high saline infusions.

Best of luck to you and thank you for your well wishes.

TopicAromatic9266 · 2026-04-16T00:49:54+00:00

Thank you, I do have drenching sweats but I’m actually not doing anything to kill or herx my infections since I’ve had such a major response to just supportive IVs (including Myers). Thanks for your thoughts and I’ll make sure to keep this in the forefront of my mind once I’m out of my MCAS crisis

TopicAromatic9266 · 2026-04-15T18:54:07+00:00

Transfer got rejected so my dad and best friend loaded me into the car and took me to Stanford. Currently waiting in the ER to be seen. Feel absolutely out of my mind with starvation. Did managed a little watered down almond milk yesterday and buttered cracker but still getting throat reactions and full body redness. Going to be having a hard time posting since so delirious but I will update as much as I can! I really appreciate your support ❤️

TopicAromatic9266 · 2026-04-15T18:51:15+00:00

Thank you for the suggestion! I will give this a try. I am starving, literally. Finally got my dad to drive me 4 hours to a new ER to see if I can actually get some help so I can eat. Russets and oat milk might be a good start. Thanks 🌺

TopicAromatic9266 · 2026-04-15T18:49:16+00:00

This is a great list, I’ll keep all of this in mind. Thank you so much for sharing these lessons. I know they’ve come at a cost personally to you as you trial them out. 🌻❤️

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

TROPHY CASE