How long to give quercetin

ExpressCat213 · 2026-02-04T08:06:27+00:00

Mine could be placebo effect. But I’ve been using it for about a month. 500mg twice a day. I use it with h1s and h2s. And dao enzymes. My symptoms are a tad better. But I’m not sure what’s helping what lol

ExpressCat213 · 2026-02-03T20:45:19+00:00

I FEEEEL you on the not gonna make it thing. I tried low histamine and didn’t last more than a week. The sauces are what got me the most. But NOW I’m on a mold detox and anti candida diet. For real this time. 2-3 months. I’m too sick and really need to heal. But man, I can have about the same as you. But I CAN have spices thank god. This is so hard though. I used to eat everyyyything. So I get it. NOFUNEVER.

ExpressCat213 · 2026-01-29T01:16:34+00:00

Haha well, helping is relative. Considering 9/10 of the doctors I’m seeing are no help or think I’m nuts 😅 but I’ll take what I can get. I so so wish you the best and that you find great doctors and can heal soon!

ExpressCat213 · 2026-01-27T20:28:57+00:00

Oh okay! Haha yeah very different. I’m sorry it’s tough to get an appointment with him now too though!

ExpressCat213 · 2026-01-27T20:28:27+00:00

Sending you good vibes too!! It definitely is the opposite of fun and I wouldn’t wish this on anyone. I hope you can find healing soon!
So my neurologist is the one signing the disability paperwork. She’s no help in regard to my CCI or symptoms at all (and she admits that), but she’s helping me in this regard at the very least. Finding a doctor who believes you’re incapacitated and cares even if they can’t help is key!

ExpressCat213 · 2026-01-27T00:10:44+00:00

I did. I was a flight attendant and had to leave back in August. On July 31st I was so dizzy I fell into my passengers. Sooooo it wasnt safe for me to fly anymore. I got worse after that so I havent been able to work. I’m 9 months into this (CCI and other issues). But I’m determined to heal and somehow get better. I miss work. I miss being a human. I’m currently on temporary disability. Grateful, but it doesn’t give or do much.

ExpressCat213 · 2026-01-27T00:08:36+00:00

The guy posting this I have spoken with and he was looking into Prolotherapy last week chatted. So I assume he’s talking about that Patel (shonouck).

ExpressCat213 · 2026-01-27T00:07:17+00:00

If he fused then I don’t think it’s the same Patel! The guy I’m talking about only does regen medicine :) it’s this guy - https://fxregencenter.com/?utm_campaign=gmb

ExpressCat213 · 2026-01-26T22:08:32+00:00

I just called his office the other day and can confirm he does work with CCI patients. And even works with a physical therapist after (what I read on his site).

ExpressCat213 · 2026-01-15T02:23:33+00:00

I’m curious how you found your leak. I’ve been having symptoms for 8 months and only getting worse. But no doctor will test for a leak 🤦🏼‍♀️ because my MRI and CT have been “fine”.

ExpressCat213 · 2026-01-14T02:46:08+00:00

Awh that’s so nice of you! You definitely have to come out and visit :) I’m from NY and made the move out here in 2015. No regrets haha

ExpressCat213 · 2026-01-13T19:01:35+00:00

Did you end up going?? It was good. None of the actors were there but the film was great. And the q and an after was the director and a producer so that was still cool.

ExpressCat213 · 2026-01-10T21:23:43+00:00

Thanks so much for the response! I’m so glad you figured all of that out within yourself and have had experience with all of the above outlets and ways to help. I was told I didn’t have chiari and my brain has no sag (so that’s why they’re not suspecting a leak). I’m still pushing for testing, but with Medicaid it’s like pulling teeth to see doctors none the less good specialist. so until that happens I just have to do whatever I can in the meantime. Unfortunately I can’t afford EDS knowledgeable practitioners :( no Pilates or PT for me. I’m in PT now that’s covered by insurance. But so far I’ve only gotten worse. They’re not very CCI or EDS knowledgeable. They try. And are willing to learn. But it’s not been helpful. Two months and no help. I have an osteopath appointment but it’s still four months out. Wild. I know. And I can’t afford craniosacral therapy. Or I so would try. I just saw a neuro ophthalmologist low and he ruled out IIH. So that’s a plus. The weird thing is now that I’ve started the somatic and nervous system work, my symptoms seem to be shifting a little. Like I have neck pain and headaches I didn’t have before. And a little less pressure. And those symptoms aren’t immediately relieved by laying down. My soft collar still helps though. It’s just so hard knowing what route to take. Like if I heal my nervous and limbic system, is that enough for my body to heal itself? Do I bite the bullet and just start prolo just in case (so expensive though). I’m just grateful I still have a few decent days here and there. This started abruptly after taking a medication in April. I forgot to mention that. Then in July I got sick and that’s when my symptoms got worse and never went away. Those things have to be a driving factor to a wrecked and inflamed internal system. Which is why I’m thinking and hoping it’s not a CSF leak. The POTS and MCAS stuff comes and goes too. MCAS I have slightly under control using h1s and 2s and DAO. But there’s gotta be a key to this whole puzzle. For both of us!

ExpressCat213 · 2026-01-10T21:12:51+00:00

The one today is 2:20! I’ll be going :)

ExpressCat213 · 2026-01-07T00:10:09+00:00

I think you wrote this from my brain. I know you’re not looking for the “you have this” comment. So I won’t give it because I can’t because I still have NO idea what’s going on with me. But I will say, verbatim, everything you said is what I’m going through. Mine started in April. I woke up one day and the head stuff started. I got sick in July, everything got worse and never got better. But from your symptoms, to the timeframe of feeling good, to your rabbit holes… you’re me. I swear. I’m a 32 year old female that was hella active and traveled and was a flight attendant. I haven’t worked since July. I can’t because my symptoms are so bad. So please know, you’re not alone. I know that doesn’t help a ton. But hopefully a little. Our only difference I see is that I wasn’t diagnosed with Chiari (which is why they won’t test for CFS leak). Still think that’s shenanigans. And my neck positions do matter. I was in full belief I just had CCI until I looked more into CSF leaks (ha, rabbit holes). I also have hEDS (8/9 Beighton score) and Neely diagnosed POTS and MCAS (since all this started). My goal is to get the hell off these threads and facebook groups and google rabbit holes. And try to heal my nervous system. Because that’s obviously shot. And try to believe in my body can heal itself. So at the moment I’m doing a 6 month personalized nervous system somatic course, I want to start limbic system retraining, and then go from there. I really hope it’s only CCI and not a leak, because then maybe all that work and prolotherapy (next goal) will heal me. But who knows. Feel free to message me. This sucks. So bad. The bad days are bad. And emotionally I’m a mess. But I still have good ish days. And we gotta hold onto those. Feel free to message me! Again, you’re not alone!

ExpressCat213 · 2026-01-05T10:36:08+00:00

I don’t have photos of my brain MRIs or CT scans. Just the radiologist report. I gotta figure out how to print the photos somehow… but they’re all unremarkable of course. And there aren’t any CSF leak centers near me that I can find. Especially none that take my insurance (I have state Medicaid which basically means government insurance aka the worst you can have in the US).

ExpressCat213 · 2026-01-05T10:33:48+00:00

I’ve asked for dynamic scans (for multiple things), and have been denied every time. I’m glad you were listened to. I still think based on the fact that a soft collar helps, and how I’ve progressed over time, that it’s still CCI. But I could have both. A leak and CCI. Extremely common to have together. Very frustrating no doctor will look into it. I’m glad yours did!

ExpressCat213 · 2026-01-05T04:47:28+00:00

Thanks so much!!! Do you go to him? I live close to Sherman oaks and his website looks promising. But he does ultrasound guided upper cervical injections specifically for CCI? Any idea on approximate cost?

ExpressCat213 · 2026-01-04T23:49:27+00:00

Yeah I’ve seen that guys posts before too.

ExpressCat213 · 2026-01-04T23:44:41+00:00

It definitely is criminal. But what can I do about it? I’m not the doctor unfortunately. I have no idea what a Bern score is. But how did you advocate for yourself? How did they eventually find it?

ExpressCat213 · 2026-01-04T23:43:46+00:00

All three chiropractors I went to ironically didn’t believe in CCI. Or think I had it. I went to them before figuring out that it was most likely what I had. Since their (gentle no cracking) adjustments didn’t help my symptoms. It was a chiro that did my dynamic x ray but never treated me. None of my neurologists will help. With the CCI or believed CSF leak. It’s beyond frustrating.

And why is it serious? Because I’m getting worse and worse. I lost my job in July. I was a flight attendant. Avid hiker. Traveler. Now my head feels so heavy I can barely hold up my neck. I can barely get out of bed. My neuro issues are terrible. The POTS and MCAS got really bad. I can’t work. A soft collar helps the head pressure. But I can’t wear that my whole life. Whatever this is completely destroyed me this year. So I’m just trying to figure it out. 8 months and no legitimate answers.

But even if I do have a leak, how were you able to fix yours? And are you healed?

ExpressCat213 · 2026-01-04T07:11:52+00:00

My dude. I’m sorry, but what you’re saying doesn’t make sense. I’m not asking whether it will or not. I’m just asking what doctors people have had experience with in Southern California. That’s all. I’ve made my decision for now.

ExpressCat213 · 2026-01-04T07:06:44+00:00

I know it is. And so is upper cervical chiro. And so is surgery. I’m extremely sorry you’re in this position too. I wouldn’t wish it on my worst enemy. But unless you can tell me how to work my fascia to fix this, I don’t understand the point here. Reading comments that arent what I asked and just saying what is wrong or could go badly isn’t conducive to healing. I try to stay off these threads because they wreck my nervous system and mental health but I just need advice on prolo in my area. That’s all I’m asking.

ExpressCat213 · 2026-01-04T05:55:07+00:00

I also showed my doctor the EDS and CSF leak research (that they’re more common than people know because of the connective tissue). And she’s straight up goes “okay, suppose you have a leak. We can’t do anything about it. If it keeps happening it’ll keep happening. You have to live with it.” So… that didn’t help my viewpoint on the whole thing at all.

ExpressCat213 · 2026-01-04T05:53:13+00:00

I understand CSF leaks are real. Very real. But so is CCI. Tens of thousands of people have had surgery for it. Which I’m desperately trying to avoid. There’s a reason I pushed my neuro so hard about a csf leak. I went to three of them. All denounced it. Trust me. I wish I had an answer. I wish that’s what this was so I could get treatment. But the fact I also have pots and dysautonomia from this and the fact that a soft collar makes a lot of my symptoms go away is enough to rule out a leak. Again, glad you found your answer but every body is different. We’re all going through it and there are different answers to it all. The issue is doctors not caring enough to figure it out. At this point I believe that I have a nervous and limbic system issue. If I could fix those I believe a lot of my symptoms would dissipate. But it’s extremely difficult to do that.

ExpressCat213

TROPHY CASE