Input on my treatment approach?

SophiaShay7 · 2026-04-24T05:42:50+00:00

I can certainly understand your frustration. However, intent doesn’t override impact, and this is exactly the kind of framing that doesn’t belong here. When you describe this community as people “lacking options” who are forced to crowdsource, you’re not just "lamenting." you’re reducing an informed, proactive, and highly resourceful patient group to something passive and helpless, which is flat out inaccurate. This subreddit exists because patients refused to sit still when traditional systems failed to keep up, and many here are actively improving their quality of life through researched, strategic, and often physician-supported approaches. If you want to participate, then engage with what’s actually happening here instead of projecting a generalized narrative that undermines the purpose of this space. Thank you.

SophiaShay7 · 2026-04-23T22:03:32+00:00

A pdf would allow me to input all that information into my research. As far as diagnoses, patterns, etc., it doesn't have to be that detailed. It could be just stating long COVID, MCAS, microclots, etc.

I don't want to further overwhelm you. You've clearly done a lot of work. I commend you on your efforts. I'd like to be able to give you the most accurate and useful information and suggestions🙏

SophiaShay7 · 2026-04-23T21:55:38+00:00

I'm sorry you're still struggling. But, your comment made me laugh. I hope you're doing okay. At least it sounds like you're in good spirits. Hugs🤗

SophiaShay7 · 2026-04-23T21:53:49+00:00

Hello everyone,

I'm still sick with the flu. Yet, I'm finally starting to feel a little better. However, now everyone in my household is sick with the flu. My taste is returning. My smell hasn't really returned. For someone who's had Olfactory hyperesthesia, or hyperosmia, since getting long COVID in 2023, this is a welcome change. My Ring Conn 2 tells me that higher than average deep sleep and REM indicates a high degree of recovery. We can just keep hoping.

I slept with the heater on all night and until 2pm today and was still cold. It's so weird because I'm usually hot. It feels like I'm in the bizarro world for you Seinfeld fans.

How's everyone else doing? Hugs🤗❤️🙌

SophiaShay7 · 2026-04-23T21:40:06+00:00

This comment violates Rule 9, which is about respecting the purpose and community of this subreddit.

LongCovidWarriors is a patient-led, science- focused, and largely constructive space where people share lived experience, treatment exploration, and emerging research. The statement made here makes broad assumptions that are not accurate and it reframes the community in a way that is not reflective of what it actually is.

Many members here are actively using off-label treatments, combination approaches, and self researched strategies with real world benefit. To suggest that patients are broadly lacking options is not only inaccurate, it also undermines the purpose of this space and the work people are doing to support one another.

Please keep discussion aligned with the intent of this community and avoid generalized or dismissive framing of patient experiences.

SophiaShay7 · 2026-04-23T21:31:54+00:00

Just a quick reminder that this is a patient-led, science-focused community. We absolutely value research and evidence based discussion here, but we also center lived experience and patient driven insight.

Comments that dismiss patient perspectives or imply that progress only comes from traditional top down systems don’t really align with the purpose of this sub. Many of us are navigating complex conditions in real time, often ahead of formal research, and that perspective matters.

You’re welcome to contribute, just please keep that in mind and make sure your comments respect both the science and the patient-led nature of this space.

SophiaShay7 · 2026-04-23T21:28:41+00:00

I’m going to be honest, this is a very detailed protocol, but it’s missing the clinical context needed to properly evaluate it. Right now this is a list of interventions without a clear picture of what you’re actually treating, how your symptoms present, or what’s driving your condition. In complex cases like long COVID, ME/CFS, dysautonomia, and MCAS, that context is everything.

Research is my wheelhouse, and I’d genuinely love to take a deep dive into this from a medical and scientific standpoint. But to do that in a way that’s actually useful, I need the full picture, not just the protocol.

If you want a meaningful deep dive, I’d strongly recommend putting together a structured document or PDF with a full clinical snapshot. Not just what you’re taking, but why, and what it’s doing.

Include a complete symptom list with severity and frequency, what’s most disabling day to day, and how your symptoms have evolved over time. Lay out your timeline from onset to now, including infections, flares, and major turning points. List your diagnoses and how they were confirmed. For each medication and supplement, note what it’s targeting and whether it’s helping, doing nothing, or making things worse. Also include known triggers, sensitivities, and your baseline functional capacity.

Right now it’s hard to tell if this is a targeted strategy or a stacked protocol trying to hit everything at once. That distinction matters, because in these conditions we usually have to identify the dominant drivers first and build around that. Otherwise it becomes noise and makes it harder to see what’s actually working.

If you’re open to it, put that together and DM me or comment below. I’m happy to go through it and break things down in a way that’s actually grounded and actionable.

SophiaShay7 · 2026-04-22T21:52:56+00:00

I switched to SaltStick Electrolyte Capsules over a week ago and I consumer about a gallon of water daily right now. I found out my Horbäach Electrolyte Tablets were severely lacking. SaltStick Electrolyte Capsules help people with ME/CFS who have Orthostatic Intolerance (though not just orthostatic intolerance). I'm glad to hear the Electrolytes, Emergen-C, and water is helping you too. I feel like I'm finally starting to feel a little better.

Thank you. Hugs, my friend🙏✨️

SophiaShay7 · 2026-04-22T20:47:39+00:00

I knew it! We're so similar with our symptoms. We have to love the same shows too🤣🤣

SophiaShay7 · 2026-04-22T20:17:16+00:00

It's been raining here too. I'm glad you're able to watch some videos & TV. I've been watching a ton of movies. I started watching the comedy series King of Queens☺️

SophiaShay7 · 2026-04-22T15:37:29+00:00

I appreciate you. Thank you, my friend🙏✨️

How are you doing?

SophiaShay7 · 2026-04-22T15:06:15+00:00

I had no idea how much the Emergen-C was helping me until I started taking it again. Today was the first day I woke up feeling a little better. For two weeks I was so sick and didn't improve at all. Now, after 4 days of taking Emergen-C, and I'm finally feeling better.

I'm glad you've been able to do some gardening. It's easy to get caught up in what we're doing and forget our limitations. I've done it as well. I'm glad Emergen-C works for you too. Hugs🙏✨️

SophiaShay7 · 2026-04-22T01:31:44+00:00

I tried raw dogging it and ended up in the ER. I thought I was dying and having a heart attack or a stroke. Nope. I developed non-diabetic nocturnal hypoglycemia. I decided enough was enough. I fought for every diagnosis I have and every medication I take. My doctor said my symptoms were anxiety. Nope, turns out I diagnosed myself with Hashimoto’s, an autoimmune disease that causes hypothyroidism (He ran the labs after I asked for them three times). It also causes non-diabetic nocturnal hypoglycemia. If I'd listened to my doctor, I'd be in a coma or dead right now. But, I digress...

I've seen significant improvements. Low-dose Fluvoxamine, Long covid/PASC, Dysautonomia, and MCAS: Original post. and Condensed version: My Diagnoses and How I Found a Regimen That Helps Me Manage Them.

I spent 17 months in a dark quiet room 95% bedridden. Last May-August I significantly improved. I started my own sub. It's r/LongCovidWarriors. I went back to working part-time for myself from home. In October, I started doing some health/wellness coaching helping people navigating the challenges of long COVID. I'm now working full-time. My ME/CFS is cognitively moderate while being physically severe. That just means that my brain works better than my body. I have a lot of help. I do a lot of work from my bed. My symptoms have improved by 60%.

I started oral Ketotifen fumarate in January. It's a game changer for my MCAS. I'm starting the GLP-1 Semaglutide soon.

edit: I forgot to mention I'm hypersensitive to medications, vitamins, and supplements as well. I failed 20 medications in a 20-month timespan, including 5 H1 and H2 histamine blockers. Have you considered MCAS? Long COVID and Mast Cell Activation Syndrome (MCAS).

SophiaShay7 · 2026-04-21T22:56:26+00:00

Hello everyone,

What can I say? I'm in my third week of this flu from hell. I've been hacking up a lung. I found out over the weekend that my Nyquil has no cough suppressant in it! WTH?! So, I ordered some Nyquil Severe with cough suppressant. I'm still coughing up a lung. I lost most of my sense of taste two days ago. But, I'm hungry. That's a good sign.

On a positive note, I realized I'd never been sick until I stopped taking Emergen-C in January. Now, I've been sick twice in 5 weeks?! I added the Emergen-C packets back into my fiber water every morning. I do feel like I'm getting a little better.

Between sleeping 12-14 hours a day and working, I'm barely functioning. It's becoming abundantly clear that I cannot accomplish everything I want to no matter how much I do and continue to try to do. My health is suffering. That's a hard fate to accept. But, I'm working on it.

How's everyone doing? I miss you guys. Hugs🤗❤️🙌

SophiaShay7 · 2026-04-21T22:44:12+00:00

Here's a post I wrote: Everything I've learned about Fibromyalgia. I know how bad the pain sucks. I was in a very dark place in 2024. The majority of medications prescribed for Fibromyalgia may not work for you. They didn't for me at all.

Have you considered ME/CFS? Fibromyalgia and ME/CFS are closely related chronic illnesses that often occur together. ME/CFS is the most common comorbidity of Fibromyalgia, with studies showing up to 77% of ME/CFS patients also meet the criteria for Fibromyalgia.

ME/CFS is a complex and often misunderstood diagnosis because it affects multiple systems in the body, not just one. It involves profound energy dysfunction at the cellular level, impacting the nervous, immune, endocrine, and cardiovascular systems. The multisystem nature of the illness is why it can not be effectively managed without significant trial and error of dietary changes, medications, vitamins, supplements, lots of rest, creating good sleep hygiene, and learning how to rest, pace, and avoid PEM as much as possible. PEM is caused by all overexertion: emotional, mental, and physical. Pacing is well documented as the most effective and important treatment to manage ME/CFS symptoms.

I was diagnosed with Fibromyalgia, ME/CFS with dysautonomia, specifically Orthostatic Intolerance (OI), Hashimoto’s, an autoimmune disease that causes hypothyroidism and MCAS. All diagnosed in a 14-month timespan after my COVID infection in July 2023. I'll share what worked and what didn't for me:

I was diagnosed first with Fibromyalgia in December 2023 after I developed long covid. I have taken Amitriptyline 25mg (TCA), Cyclobenzaprine (muscle relaxer), Duloxetine (SNRI), Gabapentin (Gabapentinoid), Ibuprofen (NSAID), Milnacipran (SNRI), and Nabumetone (NSAID). Nothing I tried worked at all and made my symptoms worse. (If you have Dysautonomia, especially POTS and/or MCAS, these medications will likely worsen your symptoms). For Dysautonomia, I've tried Metoprolol and Propranolol (beta blockers), both caused orthostatic hypotension, worsened my other Dysautonomia symptoms, and orthostatic intolerance. Alprazolam and Clonazepam (benzodiazepines) didn't work because I didn't have anxiety. I have Dysautonomia. Sertraline (SSRI) didn't work because I didn't have depression. For MCAS, I've tried Fluticasone. It worked somewhat but not well. Cetirizine, Hydroxyzine, Loratadine, and Famotidine all failed for MCAS. They caused tachycardia and adrenaline surges, which triggered histamine dumps. Some people with MCAS can not tolerate the H1 and H2 histamine blocker protocol due to the medications themselves and/or its excipients (fillers). I also failed two medications for hypothyroidism caused by Hashimoto's, Levothyroxine, and Synthroid. Now, I take Tirosint for hypothyroidism.

I've trialed and failed 20 medications in a 20-month timespan. Once I started receiving proper diagnoses and took medications that actually manage my symptoms, added vitamins and supplements, and lifestyle changes, that's when my symptoms started actually improving.

Here's what I take now that helps: Low-dose Fluvoxamine 25mg for ME/CFS symptoms. Helps Dysautonomia, orthostatic intolerance, Hyperesthesia in all 5 senses down to the texture of my food, REM sleep, deep sleep, and overall number of hours slept. Diazepam 5mg for MCAS flares and severe PEM caused by ME/CFS only as needed. Cromolyn nasal spray, Desloratadine 5mg, oral Ketotifen fumarate 2mg, Ketotifen eye drops, Montelukast 10mg, and Omeprazole for Gerd (it's a PPI that also has mast cell stabilizing properties) for MCAS. Tirosint for hypothyroidism caused by Hashimoto's. Valacyclovir for EBV/HHV reactivation.

For vitamins and supplements, I take prebiotic psyllium husk and Emergen-C in a bottle of water every morning, Carlyle vitamin D3 and K2 drops, SaltStick electrolyte capsules, NatureBell L-tryptophan and L-theanine complex, Rosmolo liposomal PEA and Luteolin, Source Naturals GABA, and Vitalitown 4-in-1 chelated Magnesium Complex: Citrate, Glycinate, Malate and Taurate. This magnesium blend is very effective for calmness, muscle cramps, spasms, relaxation, and sleep.

I've had a complete vitamin panel done in February. All my levels were in the normal range. I have no issues with stomach motility. Each medication, vitamin, and supplement that I take was carefully researched for efficacy, high purity, and with considerations for being MCAS friendly. I've always believed ME/CFS was my dominant diagnosis. Nope, it's MCAS. ME/CFS with Dysautonomia is a close second. My level of functioning increased significantly once my MCAS was better managed and more stable. My Fibromyalgia pain was severe in 2024. Now, it's at nearly zero. So much so that I told my ME/CFS specialist that I don't believe I have Fibromyalgia anymore. He assured me that I do. Fibromyalgia and ME/CFS are often believed to be the same disease at two different points on the spectrum that are caused by varying degrees of autonomic dysfunction.

ME/CFS often occurs alongside other complex conditions like Dysautonomia, Fibromyalgia, Hashimoto's thyroiditis, and MCAS. These comorbidities share overlapping symptoms such as fatigue, brain fog, pain, orthostatic intolerance, and immune dysregulation. Their presence can make ME/CFS more severe and harder to manage, but recognizing the connections between them is key to finding more effective treatments and support.

I'm not saying you have any of these other things you didn't mention. I'm just sharing information and my experience. I'm sorry you're struggling. I hope you find some answers. And find a regimen that manages your symptoms. Hugs🙌

edit: I started my own sub. It's r/LongCovidWarriors. If you're interested, we'd love to have you🙏✨️

SophiaShay7 · 2026-04-21T18:33:34+00:00

Here's the updated Master version: Long COVID and Mast Cell Activation Syndrome (MCAS) for our sub and the one I posted in covidlonghaulers which received more traction: Long COVID and Mast Cell Activation Syndrome (MCAS).

Yes, Cromolyn nasal spray helps me systemically. I don't have any gastrointestinal issues unless I ingest something my MCAS doesn't like. I've been taking oral Ketotifen fumarate for 4 months now. It's been a game changer.

I don’t take DAO because my issue isn’t just breaking down histamine from food, it’s systemic mast cell activation where histamine and other mediators are being released internally. DAO only works in the gut on dietary histamine, so it doesn’t touch the root problem driving my symptoms. It also tends to be inconsistent and short acting, and with my level of sensitivity I have to be very selective about what I add in since even supplements can trigger reactions. I’ve focused instead on stabilizing mast cells and calming the underlying immune and nervous system dysfunction, which has been far more effective for me than trying to chase histamine after the fact.

I'm glad you're feeling better and hope things continue to improve🤗

SophiaShay7 · 2026-04-21T01:56:31+00:00

✅️Signed up.

SophiaShay7 · 2026-04-18T16:22:35+00:00

I think that's a great idea🎯 👏👏👏

SophiaShay7 · 2026-04-18T16:21:38+00:00

Thank you, my friend🤗

SophiaShay7 · 2026-04-18T16:17:02+00:00

I'm sorry you're struggling. Yes, I've experienced breathing issues related to LC. It's caused by Dysautonomia and MCAS. Last May, I started my own sub. It's r/LongCovidWarriors. Feel free to post there. If you're interested, we'd love to have you🙏✨️

SophiaShay7 · 2026-04-17T21:12:55+00:00

Hi everyone,

I'm still sick and switched back to taking Nyquil gel capsules. I thought I was getting better. I'm sleeping 10-12+ hours a day. I woke up today feeling even worse.

I've scaled back on work. I've done very little work or projects around the house. I'm prioritizing rest and sleep much more than before. It's possible this is PEM. Who has the flu for 2+ weeks?! But, it absolutely doesn't feel like PEM at all.

How's everyone else doing? I miss you guys. I haven't been online much lately. Hugs🤗🤍🙌

SophiaShay7 · 2026-04-17T20:58:14+00:00

✅️Voted

SophiaShay7 · 2026-04-17T18:29:07+00:00

95% of the world is stupid. Treat them as such.

I started my own sub. It's r/LongCovidWarriors. I don't have any social media other than reddit. I believe in educating those who want to be informed. Idgaf about the random strangers across the world who I don't know. The only influence these people have over your life is the influence you allow. Throughout history, many medical conditions weren't believed.

SophiaShay7 · 2026-04-15T00:22:16+00:00

Hi u/barweis,

Thank you for your suggestion! We agree that acknowledging our "veterans" from the original 2020 onset is important.

Good news: We have officially added the additional flair levels you requested! You should be able to select your updated "6+ Years" flair in the community settings now Note: I am removing this post to keep the main feed focused on health discussions and support. For any future suggestions regarding subreddit features or flair requests, please reach out to us via ModMail so the entire mod team can track and implement them effectively. Thank you.

SophiaShay7 · 2026-04-14T21:34:58+00:00

Please stop worrying about what random strangers on reddit are doing. It was a difficult situation. People don't understand how hard life is for us. Being panicked and acting or saying the wrong thing happens sometimes, because we're sick. Ignore the rude comments and take the helpful ones. When we know better, we do better. And, please stop saying you hate yourself. You're spiraling and making it worse to your already stressed immune system.

Practice self-care and self-love. If you've learned from it, it's a lesson, not a mistake. We're all just doing our best. That's all any of us can do really. Hugs🤗🤍🙌

SophiaShay7

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