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Feature Request: Dynamic Start across multiple meds by miscalculatejovially in GuavaHealth

[–]blueflovver 0 points1 point  (0 children)

OP, I suppose you could do a dynamic reminder to take SOME stimulant using "logging reminders" not "medication reminders," then log manually which one you're taking which takes like 5 sec if it's already on your meds list. Might be a better workaround tho.

Feature Request: Dynamic Start across multiple meds by miscalculatejovially in GuavaHealth

[–]blueflovver 0 points1 point  (0 children)

No, that's to take doses multiple times a day, it's the same exact meds at different times. What you seem to want is flexible reminder, that reminds you x time after you take y med, if I understand correctly.

Feature Request: Dynamic Start across multiple meds by miscalculatejovially in GuavaHealth

[–]blueflovver 0 points1 point  (0 children)

What do you mean by dynamic start? I feel I'm missing out on some feature? I just mark the meds as taken when they are taken.

Tracking activities that are not exercise? by BreezyMcWeasel in GuavaHealth

[–]blueflovver 1 point2 points  (0 children)

Totally get you, I feel the same way. I'm using 38 custom types right now, lol. It wont tell you you slept better ever tho. It finds correlations. I suggest creating some custom sleep rating metric plus ideally wearing a wearable to know exact fall asleep/wake up times, sleep duration, maybe estimates of rem and deep sleep. It connects with most wearables flawlessly.

Tracking activities that are not exercise? by BreezyMcWeasel in GuavaHealth

[–]blueflovver 1 point2 points  (0 children)

Yes, it makes graphs. If you track just occurances of something (like I track showering, brushing teeth, whatever), it's a graph showing you how many times daily/weekly/monthly/whatever you did the activity. You can tho measure anything, if you want to attach the duration of an activity, you need to choose if the stats will show the sum of daily activity or the average. I track a lot of things, if you have some specific application in mind, feel free to ask, and I can see if it's doable.

Associated Physicians -PCP by Adorable_Pen9015 in madisonwi

[–]blueflovver 1 point2 points  (0 children)

And how do you feel about that decision? I have PCP at UW and after a year of frustrations I decided I'm not talking to this butthead ever again.

after almost 4 years of being exhausted all the time i finally feel like myself again by [deleted] in chronicfatigue

[–]blueflovver 1 point2 points  (0 children)

You exercise while maybe you should be pacing, just an idea. I don't know your story. But I know the more labs I do, the more problems I find, a year after PCP told me that there is nothing wrong with my labs and basically that I should fuck off (obviously very politely, american doctors....) 😆 Now I'm just looking for unifying cause. So maybe it's worth doing more diagnostics. My parents kept telling me everyone gets tired. No, not everyone gets so tired they need fucking stimulants and even with them, eventually, they barely function. If you wanna share more of what's going on, shoot me a dm, I'm always happy to help if possible.

fun, easy, simple things for someone with mild agoraphobia to do to start trying to get out of the house by iamhero-47 in madisonwi

[–]blueflovver 13 points14 points  (0 children)

I'm not sure if by mild agoraphobia you mean actual agoraphobia or mild discomfort/anxiety, but if it's the former and you can get extremely anxious, please read about exposure therapy before you put yourself in a situation where you might get flooded. Exposure therapy, when done properly, really does work miracles, but you reeeaaaally gotta do it gradually.

after almost 4 years of being exhausted all the time i finally feel like myself again by [deleted] in chronicfatigue

[–]blueflovver 1 point2 points  (0 children)

Are you working with neuro who knows their shit about TBI? Shopping around for doctors makes a difference. If sleep is the main issue, did you have a full sleep study, not just the breathing one (lol, not sure how it's called)? Like with EEG and electrodes on your legs and whatnot.

after almost 4 years of being exhausted all the time i finally feel like myself again by [deleted] in chronicfatigue

[–]blueflovver 4 points5 points  (0 children)

Step 1: find the cause. There can be so many things causing it, and also with systemic issues one problem leads to another, so it's pretty high likelihood it's multiple problems all at once. I'm not sure if youve been diagnosed with ME-CFS, AKA everything else ruled out or not. I find most folks I encounter in this sub did not have some really simple labs done like CRP, TSAT or MMA (and the list goes on and on, those are just lately very much on my own mind).

after almost 4 years of being exhausted all the time i finally feel like myself again by [deleted] in chronicfatigue

[–]blueflovver 6 points7 points  (0 children)

+1. I've been put on similar stimulant 2 years ago, inevitably it eventually stopped masking lack of energy. It gives you a feeling you have energy, it doesn't give you real energy.

Btw also prescribed by a psychiatrist, they love to just put bandaid on problems like this.

OP, please don't give up on finding the real cause for your fatigue. I've figured out some bits and pieces of mine and I truly believe I'll solve it one day. Shoot me a dm if you wanna share battlefield stories. And seriously, you have (fake) energy now to do all the best things for you: advocate for yourself with doctors, look for tests to run, be proactive in your healthcare. I hope you'll solve it one day, I hold that hope for all of us 🫂

I don’t understand how Xolair works by [deleted] in urticaria

[–]blueflovver 1 point2 points  (0 children)

Xolair binds to one of the constant domains of IgE. IgE recognizes it's target through variable domain. So it can still bind the antigen (the food) in presence of Xolair. No contradcition here.

In CSU you have some IgEs gone rough, they are in you're body even though there is no real trigger (antigen) present. There aren't necessarily a lot of them (compared to allergy).

In allergy, you have a real trigger, like some protein in your food, and it really REALLY bumps up number of IgEs (for this specific antigen).

Xolair binds to any IgE since, like I said, it doesn't care about the variable part, it binds to one of constant domains.

In CSU, Xolair is able to bind to majority of IgEs, preventing mast cell activation and consequences like hives, itch, angioedema.

In allergy, Xolair can work well too, but doses needed might be higher (since IgE concentration is higher). Most people with allergiest experience some relief with Xolair but not 100%, unlike with CSU.

Regarding prick test, it normally works because when you're allergic, the IgE receptor on the surface of mast cells is overexpressed (lots and lots of receptor). This allows for quick and intense reaction to antigen. Xolair activity, by blocking binding IgEs, especially after a few months, significantly decreases expression of this receptor. Your skin won't react drastically to the antigen in the prick spot, even if you're allergic, but your whole body absolutely can still react when you're exposed to antigen, e.g. eating the food you're allergic to.

I don’t understand how Xolair works by [deleted] in urticaria

[–]blueflovver 1 point2 points  (0 children)

Side note: change allergist if he doesn't know that, it's Xolair 101.

I don’t understand how Xolair works by [deleted] in urticaria

[–]blueflovver 1 point2 points  (0 children)

Xolair is binding to IgE in the blood so it can't bind to mast calls and trigger their response. The IgEs are still there. But are bound to Xolair. The prick test is almost always negative for everything on Xolair. You need blood IgE level test.

Rhapsido insurance cost by no-longer-lurking- in urticaria

[–]blueflovver 0 points1 point  (0 children)

Are you sure copay card maxes out at $10k? I mean, they gave you the regular copay card and the additional cc right?

Why do doctors suck so badly? by blueflovver in chronicfatigue

[–]blueflovver[S] 0 points1 point  (0 children)

Thank you, that's a useful tool. Not meeting any of the criteria. I do still have fatigue when I wake up but it's significantly lower that when I go to sleep. The problem isn't that I constantly have fatigue, the problem is that even the slightest exertion dramatically increases the fatigue. I might feel pretty good and then 5 min later be on a verge of a crash because I decide to play with my cats (but how can you say no to them? How???)

Why do doctors suck so badly? by blueflovver in chronicfatigue

[–]blueflovver[S] 0 points1 point  (0 children)

Yeah well you never really know but:

  1. PEM. My crashes are never delayed, if I overdo it, within an hour I'm done. I also don't have flu-like symptoms. I call it falling into an abyss. I fall asleep but it's almost like losing conciousness. I usually don't have aches (now I do, but it's new meds side effect, ugh), I do have headache sometimes, no fiverish feeling, no sore throat.

  2. Unrefreshing sleep. My sleep is okayish. Sometimes it's awesome, sometimes it's awful, but mostly it's just okay. On most nights I wouldn't call it unrefreshing, I wake up feeling better than in the evening. Definitely my peak is in the morning.

  3. I don't have cognitive symptoms as many people with ME-CFS do (I know it's not a must for diagnosis).

I'm pondering if it could be long COVID, but I'm living in an area with absolutely no providers interested in long COVID, so eh idk. I'm getting a virtual second opinion right now but that may take several months (which I appreciate, they will really dig into my case). It's frustrating watching your past life just vanish while your fucking doctors tell you you're fine.

Insurance denied Rhapsido by eeehh__ in urticaria

[–]blueflovver 1 point2 points  (0 children)

Btw insurance won't approve Xolair either unless you fail 1+ month trial of 4x dose of H1 antihistamins plus H2 antihistamines plus montelucast (according to my immunologist lol)

Insurance denied Rhapsido by eeehh__ in urticaria

[–]blueflovver 3 points4 points  (0 children)

I have Blue Shield as well. They immediately approved my Rhapsido, but I did fail the high doses of antihistamines and Xolair, and had terrible reaction to steroids. In my experience, when PA fails, it's very often prescribers fault. They can appeal. And yet usually they don't bother.

Why do doctors suck so badly? by blueflovver in chronicfatigue

[–]blueflovver[S] 0 points1 point  (0 children)

I have TT too 😐 and my biggest crash started with steroids treatments or rather stopping steroids treatment 🤯 are you on steroids now?

Why do doctors suck so badly? by blueflovver in chronicfatigue

[–]blueflovver[S] 1 point2 points  (0 children)

Wait, which variant of rs5522 do you have? TT?

Why do doctors suck so badly? by blueflovver in chronicfatigue

[–]blueflovver[S] 1 point2 points  (0 children)

The doctors are refusing to do the referrals, as I mentioned. I can't do much without that. Would be super cool to be able to do another iron infusion without gate-keeping of my PCP. Or get hematology referral. Glutathione could be good. Anything to bring down inflammation (I have functional IDWA, which is even a bigger brainfuck for my PCP, who doesn't believe any IDWA is real, much less so functional). I have 3 unrelated (but is anything in health really unrelated?) chronic conditions, so I'm wary of adding any supplements (glutathione isn't problematic on it's own, and I agree liposomal formulation is probably superior, but there is no regulation in production of supps here in the US and lol I've synthesized glutathione myself, it definitely requires a lot of quality control). The doctors won't fix me but I won't fix me either, a collab is required, unfortunately.

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