Polly | Make ampligen AVAILABLE for ME and L.C

Living with Long Covid. We need treatments! Give us treatments that already exist for goodness sake.

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@tarmac_xx Thank you so much 💜 it sucks to find communication so hard not even sure why I guess there’s a lot to it. But promise I’m thinking of you wishing you well in my thoughts 💕

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@neuropsychSjo @Bradgolf1216 Lmfao 😭😭😭

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@MichelleSairsel Possible pernicious anemia so can’t absorb in pill form necessarily

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

Anyone know who prescribes B12 injections (to self administer) in the UK? #LongCovid

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@meizhhhh @fulltimesickgal Same, not suprised ableds can’t understand because i sure can’t!

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@LeitzkeMarco Thank you! But oh dear, I just read not to do this with POTS… is that true? #LongCovid #Thenicotinetest

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

Please help! Nicotine question: Can I cover the patch and start with just 1mg? I tend to react VERY strongly to medication. #LongCovid #Thenicotinetest

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@SickPatato Yeah like wtf is this, drives me mental. Sometimes I feel like I can’t breathe properly with it

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@tarmac_xx My emetophobia is screaming oh my days

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

So you’re telling me a drug has been out there for decades that COULD (*not saying will*) help improve *some* people with MECFS but it’s not approved?? #MECFS the drug being ‘#Ampligen’. #LongCovid

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@IrisIsAutistic Only had CT with contrast, felt hot and flushed for a few seconds and then like I’d peed myself lol

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@IrisIsAutistic brain ‘open MRI’ twice now (called ‘upright’ but I lay down still for my brain scans), I survived. Honestly it wasn’t unbearable. Noise and time were the hardest bits.

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@MECFSisCFSnotME @drtaubraun Yes, about 4 times now in less than 3 months, most recently about 2 days after infusion it dropped by half and I’m worried it’s dropped again :(

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

Is it normal for phosphorus levels to fluctuate? Mine are down from 1.28 to 1.03 in 2 days - scared I’m heading for hypophosphatemia again #LongCovid

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@MECFSisCFSnotME @drtaubraun Hey thank you so much!

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

@drtaubraun @MECFSisCFSnotME Hi! kidney function is normal, vitamin D is also normal. No phosphate found in urine either… calcium is also normal, as are other electrolytes, it’s very odd!

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

LOVE the fact that people have started adding ‘approve ampligen for ME/CFS and Long Covid’ to their banners as well! #LongCovid #MECFS

[Long Covid Commentary @LongCovidComms]

Ampligen is a drug that needs to be made accessible to people suffering with #longcovid and #mecfs. It has given life back to many me/cfs patients over the years and now we have reports it’s doing the same with long covid.

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

Vitamins normal, other electrolytes normal etc

[Polly | Make ampligen AVAILABLE for ME and L.C @positivepolly02]

What could cause sudden severe hypophosphatemia (repeated episodes) while kidney function is normal and calcium is also normal (suggesting not thyroid apparently) diet is also okay #LongCovid #DisabilityTwitter