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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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First Post!

Just a warning as I get into a variety of topics on here including sexual one's related to my health or other life events, was going to add more to my about page here but I can't find out where you go to edit that. Anyhow in the past few days after introducing vitamin K2 I've been able to tolerate methyl-b12 again. A lot of my symptoms from all of my reactions seem to cross wires in one way or another. I wish I didn't need it but when I don't take b12 my fatigue, insomnia, and jerks when I'm sleeping are horrible with the only thing that can help somewhat being niacinamide which can also cause an decreased immune flare threshold. I didn't take any today and just took my K2, b12, and vitamin C this morning. I also drank coffee which I feel I need to quit because when I'm already in a flare it makes everything especially worse. I was doing alright today save for a rash from taking a hot shower which usually happens either on my legs or chest. I was still save for some wonky feeling mentally and a little dry mouth ok until I had the bright idea to see if adding an afternoon dose of vitamin C as ascorbic acid would be alright and now I'm not feeling so hot but hey it's one other thing I tried I'll never try again. I seem to react to it but without vitamin C in the morning I have less energy so I guess I'll just keep it there and when I get a chance and some grounding again after this reaction eliminate coffee to see what happens. The immune reaction from this also brought back enough of the erectile dysfunction to be an issue whereas right before it took a bit to get going but was fine, can only get a little bloodflow going down there but it seems like the immune shock is the problem as it still can get down there but the psychological effect of the immune shock on my nervous system isn't allowing the arousal thing to happen fully when just minutes before the extra C it was fine. Though I hope it'll fade later. This is a different flavor of immune reaction though, I feel more speedy and histamine-y right now with a slight increase in my tinnitus. The main one's usually made worse by coffee if already flaring hard are more fatigue-y and face/forehead/cheek burn-y. As I type this the annoying over electrified brain feeling is in full swing. I really hope that "increased energy" from the morning C isn't actually just a borderline immune reaction cause I don't know how I'd react to camu camu powder with everything else compound wise in it and just have bell pepper to chew on is very expensive and my food benefits wouldn't approve of that as everything is expensive enough and any experimentation with food on that front also needs to be carefully planned.

Luckily I have multiple days off here by some miracle so I can rest and see how things play out here. I would take out coffee in the morning and see how thing go but I just integrated K2 and I wanna have a largely unaltered trial run with it. I also want to see tomorrow how I respond to just gluten so I'll make some fresh bread which should be fun. If I don't have a ridiculous response to it though alone (the bread is just gonna be sunflower oil, sea salt, only sugar for the yeast, and water with a little oil on the outside to help it crisp more). Right now I'm trying to do a lot of narrowing down. I also have nasal cromolyn to try but right now I'm a bit afraid to take it as I don't know if I'll be one of the people with a severe reaction to it and those worst reaction can literally drag on for days. Just planning a relaxing night here with some internet friends and streaming some arcade games as my potato PC can handle that without giving me bad EHS symptoms and it's fun. Though I've been a bit worried about my PC lately and have been getting down parts I need to buy to have someone build me another as this one has been experiencing issues with turning on that upon inspecting seem to be from some loose motherboard connector that I hope me wiggling around this morning to get to work stays working now since otherwise it has no issues. PC issues are the absolute last thing I need to deal with right now as I barely have the energy to get on my knees, open the thing up, and troubleshoot what is going on.


Lately, feeling a tad better after months of too run down, I am enjoying a cup of coffee.

I notice it's drying. And our systems are already dry.

If I take a very low dose of Modafinil (a nootropic lift), I will crash even if I do virtually nothing.

I make almost a cold brew as I cannot tolerate the other bitter things that emerge from strong coffee. so I drank one cup today, made by somebody else, and now feel lousy.

But that little lift is nice. Although then I am less likely to lie down and fully rest in the afternoon.

so, it might feed feeling a bit wrung out.

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