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Ander Swift @anderswift

find me @ https://t.co/WAcXS4mjxA 🦋 Joined March 2009
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Ander Swift @anderswift

2 years ago

@diannahaze After mostly losing hope I got significantly better in years 3 and 4 of LC. I'm still very carefully trying to expand on what I am able to do safely, but hardly ever have full on crashes now. Preventing crashes for extended periods seems to be key for a lot of people.

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Ander Swift @anderswift

2 years ago

@kate_the_purple That's my usual dose 3 times a day. Seems fine?

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Ander Swift @anderswift

3 years ago

@DisMoviePod ✋

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Ander Swift @anderswift

3 years ago

@AfricaKenyah oh no! dm me, i might be able to pass the feedback along to the right team.

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Emmy Cicierega @EmmyCic

3 years ago

I only want art made by human beings and I want those human beings to be paid well and stoked about living their dream

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Ander Swift @anderswift

3 years ago

@clarejdaly I find surprisingly often that they've *never* heard of it but also have it.

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Ander Swift @anderswift

3 years ago

@qkate Yeah, I swear my tiny home has more useful storage than my big house did!

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Ander Swift @anderswift

3 years ago

@qkate One thing that might be individual to me and my ME/LC is that if I reduce my activity, my capacity for it goes down really quickly, so I have had to be intentional about replacing walking across the house or going up and down stairs with other similar activity when I'm able.

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Ander Swift @anderswift

3 years ago

@qkate Surprisingly, it wasn't that much adjustment from a 3 bedroom to small RV because I already had so many days where I was unable to get around. It's really important to keep things organized to make the most of the space, but that's probably obvious to everyone but my partner. 😂

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Ander Swift @anderswift

3 years ago

@chydorina @Gee24218071 @remissionbiome Any suggestion for something similar but better for gentle vagal stimulation (and available in US)?

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Ander Swift @anderswift

3 years ago

@hanolliver The commercial products like nuun, liquid IV, get quite expensive when you need to drink them every day. But you can buy the ingredients like salt, food grade potassium chloride, dextrose, etc. and a decent scale and mix your own ORS very easily with a little juice or herbal tea.

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Ander Swift @anderswift

3 years ago

@ahandvanish I replaced my beta blocker (bisoprolol) with ivabradine while I was taking it, otherwise my blood pressure would tank. Ivabradine was pretty similarly effective at reducing my POTS symptoms, but made me significantly more tired so I switched back to bisoprolol after a few weeks.

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Ander Swift @anderswift

3 years ago

@TJStiles_Author Good point but if covid is killing a thousand Americans per week, it's got to be giving way more than a hundred long covid, no? Long covid is a much more common outcome than death. Recent NIH research indicates ~10% of infections lead to symptoms lasting over 6 months.

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Ander Swift @anderswift

3 years ago

@_diatoma Thanks. It was one of the only things that made a really noticeable difference in how much I can do without PEM, though the effect has kinda waned over the years.

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Ander Swift @anderswift

3 years ago

@_diatoma Yeah, it's an absolute nightmare. In case it's helpful to you LDN was the only ME/LC drug I was able to get through my primary care doctor (who was terrified to even take over the rx for my non-controversial beta blocker). I brought a fistful of research printouts and begged.

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Ander Swift @anderswift

3 years ago

@BeingCharisBlog And they wore masks without even needing to be asked!!! (Surgical but at this point I'll take it.)

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Ander Swift @anderswift

3 years ago

@BeingCharisBlog Thankfully a disability rights org in my area still does home visit covid vaccines (took over the program from county public health). They are more than happy to do front porch.

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Ander Swift @anderswift

3 years ago

@tessfalor Also pacing yes, but excess "radical rest" set me back. If I don't keep up a certain tolerable level of activity my "energy envelope" shrinks within days, and it's very slow and difficult to build it back up. So basically finding that invisible line and putting one toe over.

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Ander Swift @anderswift

3 years ago

@tessfalor 1. relatively high dose of antihistamines and mast cell stabilizers (mostly OTC, cromolyn was harder to get esp at high doses which were game-changing). 2. LDN 3. cardio-selective beta blocker for POTS was pretty easy to get

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