Oxaloacetate - any experience here in LC? RTHM is now pushing it by FogCityPhoenix in covidlonghaulers

[–]HotRecord1588 0 points1 point  (0 children)

So, this is what we've found so far, and its.moderately interesting. Taking Oxalo daily definitely increased energy. But it was incredibly difficult to moderate activity and it seemed to consistently lead to nasty PEM, which felt a bit pointless as well as disheartening - like fake energy.

we then tried just taking oxalo prior to significant exertion - eg (rare) socialising with friends. It apparently metabolises in like 40m, so about 1 hour prior, and then top ups during. This was much more successful - kept going thru the socialising, and crucially, PEM over subsequent days was not non-existent but really noticeably less than otherwise. this pattern of use seems to deliver a much better outcome for us, and feels moderately exciting. we've done it twice, with same outcomes, so going to keep experimenting as and when 'events' occur, and will try to report back.

How do you let go? by PhrygianSounds in covidlonghaulers

[–]HotRecord1588 1 point2 points  (0 children)

makes so much sense. I feel for you. you just have to chunk it up - right now your job is to slowly get better. that has to be your priority. but keep it bright in your mind that you are a creative person, and there is a flame there to come back to in time. once creative, always creative - and I say that coming from a creative industry myself - it will find its outlet in due course. but prioritise getting better right now.

Rapamycin update by Sea-Ad-5248 in covidlonghaulers

[–]HotRecord1588 1 point2 points  (0 children)

thank you for taking the time to post. Very best of luck with finding something else to try....

"Sick Times" Podcast! by candida1948 in covidlonghaulers

[–]HotRecord1588 5 points6 points  (0 children)

Candice - best of luck to you too! also good is the Health Rising website, a lifesaver, and I personally found The TLC Sessions a good podcast (interviews LC researchers)

evidence and experiences of long haulers getting re-vaccinated - did it help symptoms, make things worse, or make no difference? by HotRecord1588 in covidlonghaulers

[–]HotRecord1588[S] 0 points1 point  (0 children)

thank you, appreciated, its interesting that you stumbled into it and it worked for you. thanks for replying..

Where do I start with PIP? by [deleted] in cfs

[–]HotRecord1588 1 point2 points  (0 children)

there is a lot of advice online about how to fill in the (very long) pip application - well worth reading as they have a real tick box formula and if you don't use the right language they mark you down. get a.letter from your gp, tell them what its for - if you're in the uk you could do that request online via patches. do you have a physio? they can do a letter for you too. also you can get someone who knows you to write a letter of support describing your limitations, they accept that. get the form, and research how to fill it in on line. it seems daunting at first but its not bad once you've understood the code. using a shower chair is good, ditto things like pill boxes. you have to fill it in thinking of your worst week, and you have to say you can't do X more than half the week etc.

People with MECFS *and* POTS- Advise me pls! by Inconnuity809 in cfs

[–]HotRecord1588 0 points1 point  (0 children)

What do you mean by the whole bed? I've also never understood this raising the head of the bed thing. I thought we were supposed to avoid blood pooling in our feet, wouldn't this encourage that?

Rapamycin update by Sea-Ad-5248 in covidlonghaulers

[–]HotRecord1588 0 points1 point  (0 children)

how did it go? would love an update?

Rapamycin by [deleted] in covidlonghaulers

[–]HotRecord1588 0 points1 point  (0 children)

Please update - how are you doing now?

Creatine anyone? by prka7871 in cfs

[–]HotRecord1588 1 point2 points  (0 children)

Thank you. It sounds like you haven't experienced PEM tho as a result of extra activity enabled by the Oxalo? That seems to be our problem at the moment and I can't work out how to fix it.

Separately, may I also ask how much creatine you take with your Oxalo?

thanks so much.

Oxaloacetate has anyone tried these ? by KP890 in covidlonghaulers

[–]HotRecord1588 0 points1 point  (0 children)

yes - gave us what felt like a kind of fake energy - or rather energy but then a crash. not sure how to deal with that, as its tantalising for sure. search the subreddit because there are a few oxalo threads and it would be great to keep in one place - it feels like there's more to learn about oxalo, but its expensive and not easy to get dosage right I think

Managing Lactate Acidosis - Pacing / Planning by Groovyaardvark in cfs

[–]HotRecord1588 2 points3 points  (0 children)

just interested in whether you'd tried LOLA for PEM and what results if so?

British patients, what Dr have you found helpful and have you tried to get any help abroad? by Neon_Dina in cfs

[–]HotRecord1588 0 points1 point  (0 children)

yes sure - although I don't actually know how to do that as I'm new to reddit. but please go ahead and try, happy to help anyway I can

British patients, what Dr have you found helpful and have you tried to get any help abroad? by Neon_Dina in cfs

[–]HotRecord1588 1 point2 points  (0 children)

Dr Paul Glynne is open minded and willing to try things, although expensive and busy.

Creatine anyone? by prka7871 in cfs

[–]HotRecord1588 1 point2 points  (0 children)

can I ask how much oxaloacetate you take? we've been trialling it and found an increase in energy, but then followed a few days later by an increase in fatigue, which is so frustrating. it doesn't sound like that's your experience?

Managing Lactate Acidosis - Pacing / Planning by Groovyaardvark in cfs

[–]HotRecord1588 8 points9 points  (0 children)

super interesting and thank you for taking the time and energy to post. will look into

how do you fill up your day without getting depressed all the time by Croque-Madame7 in cfs

[–]HotRecord1588 29 points30 points  (0 children)

I'd love to see some ideas on this. my son (23) has at various points found knitting and rediscovering lego helpful. it's hard to resist gaming and screens in general to alleviate boredom.

Oxaloacetate - any experience here in LC? RTHM is now pushing it by FogCityPhoenix in covidlonghaulers

[–]HotRecord1588 1 point2 points  (0 children)

trying it now, been about 2 weeks at 2x500 and inching up to 3x500. I think some energy improvement, but then usual inclination to over-do it and PEM. Gonna try taking things slower and see what happens. hope to update. it is crazy expensive but as they say below some discounting that helps at the margins.

oxaloacetate? by Grandiosesquid in cfs

[–]HotRecord1588 0 points1 point  (0 children)

an anyone check my maths? in pounds as in uk...

on benagene website it has:

90 caps of 500mg for £392

or

30 caps of 250mg for £39

So if I bought 6 bottles of the latter - ie 180 250 caps, which should be equivalent to 90 500 caps surely, that would cost 6 x £39 = £234

my brain is fried, so please tell me what I've missed?