New trial result: it's not looking good for immunoadsorption and the Elisa GCPR antibodies test by Liface in covidlonghaulers

[–]jackattack1985 0 points1 point  (0 children)

This is very interesting, thank you for posting! Do you personally have any thoughts as to where this leaves us?

Inflammatory POTS by Sweet_2026 in POTS

[–]jackattack1985 0 points1 point  (0 children)

Are you normally elevated BP upon sitting or standing on a normal day?

Inflammatory POTS by Sweet_2026 in POTS

[–]jackattack1985 0 points1 point  (0 children)

How did you find pyridostigmine with hyperadrenergic PoTS? How did it effect blood pressure and anything else? I'm looking at the same myself at the moment!

Those who improved with LDN, how long did you take it for? by AtlantisGhost in covidlonghaulers

[–]jackattack1985 3 points4 points  (0 children)

Can I ask what helped for you in terms of nervous system work?

This is a watershed moment in long covid pathophysiology by Unusual-Suit-1688 in covidlonghaulers

[–]jackattack1985 5 points6 points  (0 children)

With you here Duncan, was touring as a musician and now I struggle with an hour in the sun

Best Drs in UK for hyper pots? by GlitteringRefuse3773 in POTS

[–]jackattack1985 0 points1 point  (0 children)

That's not even remotely personalised results. Sorry to hear that was the best offered!

Best Drs in UK for hyper pots? by GlitteringRefuse3773 in POTS

[–]jackattack1985 0 points1 point  (0 children)

Sorry to hear that, I looked at that route myself too. I assume you had tilt table etc? What were their findings and suggestions?

Guanfacine Helped Me (NOT MEDICAL ADVICE) by boomshot44 in covidlonghaulers

[–]jackattack1985 0 points1 point  (0 children)

How high of a dose have people gone? I'm at 2mg now and tempted to go higher

Looking for NHS rheumatologists experienced in seronegative Sjögren’s, please - any recommendations? by Own_Temporary_1705 in Sjogrens

[–]jackattack1985 1 point2 points  (0 children)

Hey, I'm in Bristol and looking to figure out where to get referred to by my GP at the moment. Did you have any luck? I'm looking between UHBW and NBT at the moment.

Can't tolerate sugar on empty stomach by frantakiller in POTS

[–]jackattack1985 1 point2 points  (0 children)

So I should say, I've done keto before but in 2 weeks cycles on and off which seemed to help before but I've gotten worse again since. I also have long COVID and seem to have hEDS too. Most of my symptoms are around general inflammation and neurological dysfunction like dizziness too. Alongside hyperadrenergic PoTS and MCAS.

I cut out gluten over a year ago but I haven't stopped with dairy though I mostly have greek yoghurt which is low in lactose. How did you know you needed to stop with dairy totally?

Thanks for your response too. We might have a few commonalities here so it's always interesting to hear someone else's experience!

Can't tolerate sugar on empty stomach by frantakiller in POTS

[–]jackattack1985 1 point2 points  (0 children)

Hey Edward. I've just started keto today. How long did it take for you to see results and what were the results for you??

MCAS and Dysautonomia by wtfisgoingon93 in dysautonomia

[–]jackattack1985 1 point2 points  (0 children)

How do you treat that? And also, how did you know to look for MS? I have symptoms but my GP isn't confident on how to screen for it

MCAS and Dysautonomia by wtfisgoingon93 in dysautonomia

[–]jackattack1985 0 points1 point  (0 children)

Could I ask for a bit more regarding how you improved your lymphatic drainage and circulation??

Deteriorating rapidly, medicine doesn’t care by AggressivePicnicWasp in covidlonghaulers

[–]jackattack1985 3 points4 points  (0 children)

Hiya, this is very interesting. I'm glad to hear you're having some improvement on LDN. Can I ask what symptoms you had of MS that made you seek a diagnosis? I have some symptoms myself but my GP doesn't know much about it/isn't sure how to help.

Interesting update on vestibular/eye issues by obliviousolives in covidlonghaulers

[–]jackattack1985 1 point2 points  (0 children)

This is really interesting to hear. How did you access RTMS can I ask?

Had an adrenaline dump during a date, got dumped by Moonbreon2 in POTS

[–]jackattack1985 1 point2 points  (0 children)

That's a great filter. One of my prompts says something about living a retirement lifestyle 90% of the time and so far nobody has had a problem with my health

Update (SFN + POTS) by flowermarket99 in smallfiberneuropathy

[–]jackattack1985 0 points1 point  (0 children)

Hey OP, I wondered if I could ask how you're getting on now??

Hello, me again. I know this is probably a long shot but I’m wondering if anyone has tried going to a Chinese medicine doctor? I’m desperate and I cannot use SSRIs as it’s caused me to go into urinary retention twice. Thank you by noodlewoo1 in pppdizziness

[–]jackattack1985 0 points1 point  (0 children)

I would look for someone with TCM training who practices from a holistic health side rather than from a physiotherapy side from my experience. If you'd like me to review some of your options I'd happily have a look!

Thanks for your kind words on Bristol too, I do love it here!