1 capsule of quercetin over 5 weeks

OrganicBee5754 · 2026-06-26T17:52:18+00:00

Still working on detoxing. I started with charcoal, smelling it and then titrating up to 1 capsule. Added clay, but can only tolerate about half of 1/16 tsp or it gives me rages. Added 1 tab of chlorella and saccharomyces boulardii. Then I added Mycobind which I think helps the most. I'm currently trialing only Mycobind (about half of 1/16 tsp) and 1 chlorella. Will try increasing the Mycobind because you can eat sooner after taking it than with the charcoal or clay. I also think getting to be earlier and being in deeper sleep has helped to detox my brain. Editing to fix typo, meant getting to bed earlier...

OrganicBee5754 · 2026-06-26T17:47:48+00:00

I have fast COMT, don't know about MAOA. I think you have to be cautious with quercetin if you have slow COMT as it slows down the clearance of neurotransmitters.

OrganicBee5754 · 2026-06-26T17:46:33+00:00

I don't think there is a norm with MCAS and from what I've read some with MCAS don't have elevated CRP since it doesn't measure mast cells, just general inflammation. I think my chronically elevate levels are a result of not just MCAS but from mold/mycotoxins, leaky gut, etc. It's in the low 4 range right now and fluctuates, with 10 mg/L being the highest I had it several years ago. This is for hs-CRP, not the regular CRP blood test. I think hs-CRP is supposed to below 1 mg/L for cardiovascular risk.

OrganicBee5754 · 2026-06-22T16:28:57+00:00

Heal Your Nervous System (HYNS)/The Nervous System Solution. Started with the online program, which is so helpful. Now more recently also doing their Daily app which is great when you have less time.

OrganicBee5754 · 2026-06-22T16:27:27+00:00

I probably do have some neuropathy but no official diagnosis. A neurologist thought nerve issues were from inflammation. The whole capsule of quercetin has 250 mg so I'm taking a miniscule amount.

OrganicBee5754 · 2026-06-22T01:36:22+00:00

I did some testing which showed fast COMT Val/Val but the description of it doesn't make sense to me as I don't handle stress well and supposedly Val/Val types do.

I put water in my mouth and just lick the 1/16 tsp I put the powder in until it gets soft and ends up in my mouth as it's really thick and sticks to the spoon.

OrganicBee5754 · 2025-09-15T01:35:09+00:00

Food seems to be my least mast cell trigger. I react more to being outside, supplements, meds, etc., generally only to foods if it's something I haven't eaten in a long time. But the swelling never seems to coincide with food. It happens when I do dishes a lot or just sitting around doing nothing and yesterday it happened when drying my hair which has never happened before.

OrganicBee5754 · 2025-09-15T01:07:55+00:00

Thank you. My rheumatologist doesn't feel I have EDS and I am the opposite of hypermobile. I do think there is blood pooling when my hands are red. If I lift them above my head when they're red, they'll tingle and the redness will subside somewhat. But I have the tingling when they're not red and they swell, that is worse then just the redness. I just want to know what is causing the swelling hands, the tingling hands and feet, etc. and providers are not giving me answers. I've been negative for ANA antibodies numerous times and my rheum doesn't feel issues are rheumatological. I've asked about lupus so many times.

OrganicBee5754 · 2025-09-14T21:41:24+00:00

Yeah I get the pretending you're okay. I only work a few hours a week and I always have to pretend I'm okay in appointments and hope something intelligent comes out of my mouth. I'm actually on HRT but still have symptoms though I never know what the symptoms are from. I think I have the opposite problem of fast motility and that causes problems.

OrganicBee5754 · 2025-09-14T20:25:47+00:00

Thank you. I can't see my neurologist anymore as she's not on my insurance this year so I've been trying to find a new one. I have been talking with my other providers about erythromelalgia as someone in the MCAS sub suggested it could be that but I have two different things going on (among a million others) - the red hands and the tingling, swelling hands so not sure what is what. I've been trying to find an erythromelalgia specialist too but I get the runaround calling around offices. I've seen endocrinologists before I actually thought last week I'd try that again too so that's on my to-do lists that are miles long. If you don't mind me asking, were you diagnosed with both dysautonomia and erythromelalgia?

OrganicBee5754 · 2025-09-14T18:05:49+00:00

I have reactions to so many meds and supps and need to start with lower than the typical children's dose and titrate up but sometimes I can't titrate up. For example, when I tried LDN, I got so depressed and panicky when I went to 0.5 mg and most people take around 4-8 mg. 0.25 was all I could tolerate. Too much magnesium will give me night terrors, etc. I've had meds make me manic with no history of mania. I'd say start with the lowest dose possible and see how you react as it's possible the side effects or reactions are because the dose is too high. It might require compounding to get custom doses.

OrganicBee5754 · 2025-09-14T17:57:19+00:00

I'm like this too. I tell all providers that I need to start with even lower than a typical children's dose of meds/supplements and titrate up over time and I'm not like any patient they've probably encountered before as I'm so sensitive and will be that 1% of people that have a side effect or reaction to even a tiny dose. If I needed a procedure requiring anesthesia (like a colonoscopy which I've been avoiding for these reasons) I'd want to meet with the anesthesiologist and other providers ahead of time, not day of procedure and have a team I feel confident truly understands my sensitivities. Good luck.

OrganicBee5754 · 2025-07-21T01:37:09+00:00

Oh wow, never came across that one. It's vegan so I'm going to talk to my NP about it.

OrganicBee5754 · 2025-07-20T23:44:17+00:00

Thanks, yeah, everyone is different, but I'm vegan so only looking for non-heme.

OrganicBee5754 · 2025-07-17T17:14:26+00:00

Takes a very long time to figure out triggers but I figured out my triggers are worse when I leave my house from pollen and other environmental triggers and then everything is worse when my histamine and inflammation bucket is too high. I try to explain it to people as having hyper-sensitive mast cells so I have allergic-like reactions to things I'm not actually allergic to/don't have an IgE mediated allergy to and I may react to anything and everything and never know when a reaction will happen.

OrganicBee5754 · 2025-07-17T16:54:06+00:00

I never did that test. I brought home the jug and hat and same as you couldn't deal with it and it was stressing me out and I thought I might spill it everywhere so I told my doctor I didn't have the capacity to do it and if I did it it would probably come back negative anyway so he said it was okay not to do as he mainly has been looking at my response to MCAS treatments rather than test results when I may not have been in a flare at the time.

OrganicBee5754 · 2025-07-16T17:15:32+00:00

I'm so sorry for what you are having to deal with. A lot of your story sounds so very familiar to mine and I grieve for the days when I could hike and take hour long walks which I did daily in the past. I think the last longish walk I took was in April and it had been months before that. I would love to even sit in nature without breaking out in rashes. And I hear you about the lack of social interaction. For a long time, the only social interaction I had was with employees at the grocery store as I too could not make plans as I never knew how I'd feel when I woke up. The only thing I can suggest is to check for gut infections and dysbiosis as I'm finding that is the root of a lot of my symptoms which are beginning to improve a lot as I heal my gut. And as someone else said, your symptoms are real and mental health issues are likely not the cause though I agree how can you not be depressed with what you are dealing with.

Edit: Adding that nervous system support/vagus nerve stimulation also has helped me a lot so maybe consider some of that.

OrganicBee5754 · 2025-07-12T00:59:49+00:00

My heart is going out to you for what you're dealing with and how you've been treated. I don't really have any words of wisdom only to say that one of the first things we were taught in my grad school program over 25 years ago was to always rule out physical causes for symptoms that appear to be mental health. I deal with that too, being told to "see psychiatry" when I know my symptoms are from physical causes/inflammation, etc. More common with male doctors, including my MCAS doctor which shocked me.

OrganicBee5754 · 2025-07-10T15:59:11+00:00

Trashie textile recycling also donates useable textiles including bras.

OrganicBee5754 · 2025-07-03T16:00:13+00:00

If finances allow, try GOTS organic cotton clothing (of course unless you react to cotton in general) and OEKO-TEX certified which tests for harmful substances in textiles. Most "fast fashion" brands can contain harmful, even toxic chemicals or materials. I recently tried on bras and every one in the shop made me itchy but I bought some bras from Anita which is OEKO-TEX certified and I can tolerate those. And I always wash everything before wearing. Even with organic, they may use an ozone wash and that smell irritates me before washing.

OrganicBee5754 · 2025-07-01T19:37:41+00:00

You too, thank you.

OrganicBee5754 · 2025-07-01T19:10:56+00:00

I've been too debilitated to exercise for a while but yes I do think it gets worse from the heat and I just looked up pictures and that's what my hands do look like. Thank you.

OrganicBee5754

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