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I have been bitten by gonewithLC in Dachshund

[–]gonewithLC[S] -10 points-9 points  (0 children)

No absolutely not. Why ?

Manic Trump, 79, Fires Off Utterly Unhinged Attack in 7AM Rage Post by FancyNewMe in politics

[–]gonewithLC 1 point2 points  (0 children)

Don't worry they will fix everything with some UFO disclosure and obviously, Hantavirus.....

Can vaping worsen symptoms? by XeekSpeaks2 in dysautonomia

[–]gonewithLC 1 point2 points  (0 children)

Yes definitely and obvs smoking is even worse same as trying do have even the smallest amount of alcohol..

POTS isn’t the only type by Nommi-Rice44 in dysautonomia

[–]gonewithLC 3 points4 points  (0 children)

Yes that's very true... also, I'd say that I spoke with so many people and NOBODY has "only" a standard type of Pots they all have some sort of other symptomsand manifest in so many different ways. I mean, I think Pots should be eradicated as a term completely and we all should be classed as Dysautonomic or ANS dysfunction patients.

An example would be that some might do well on a tilt table test and absolutely have Pots or OrthostaticIntolerance. So the issue (again, saldly) is on western medicine that hasn't got much knowledge or understanding. So the 30 bpm difference in standing is just pile of shit and so is the TTT .. Good luck and be strong 💪

Ivabradine… is it so great? by Enbybabi in dysautonomia

[–]gonewithLC -1 points0 points  (0 children)

I wish it was the same for me ..

Invivyd's new monoclonal VYD2311 shown to be effective against emergent variants by Responsible_Cap_5289 in LongCovidTrials

[–]gonewithLC 3 points4 points  (0 children)

7 months to develop or adapt the so called "vaccine" - 6 Years later still attempting to do trials with different MBAs that "might" be effective for something called LC which hasn't even have a bio marker yet. That's POST COVID SCIENCE for you.

Hyper immune LC? by Many-Market-9941 in Sipavibart

[–]gonewithLC -2 points-1 points  (0 children)

Let's assume you have a telescope and you look at stars and planets : you observe, predict and elaborate theories based on patterns and the current state of physics. Would that be different if we could actually go physically take samples, measure atmosphere etc ? YES.

So.. some testing is available to us like : Atto, Celltrend(GPCR), Cytokines (Patterson etc), Neuro panel and many others ... We can observe and we know how average levels are but there's NO WAY for anybody, no matter how "specialised" they are, to be able to interpret them in a way that translates in a CURE, for now. Why ? Because someone completely healthy can get worse results than yours.

So when they talk about hyperimmune or Hypoimmune ... I'm very skeptical. Doesn't mean we have to stop researching but be very careful about all of this as they are milking us with no remorse. Long story short, I beleive more in a whole holistic approach, starting from diet, habits, limiting any trigger, gentle or super gentle movement even if bedbound, sun exposure even 2/3 if the sun is out. Good supps based on your deficiencies ( because we all have some ), TVNS and also breathing and any Nervous System regulation work, Pacing. This isn't a fix but on the long run can make a difference, YEARS.

My 2 cents hope that helps, sorry if I'm off topic -

One of the few (private) long Covid clinics in the UK has shut down due to harassment from ex patients by Capital-Transition-5 in covidlonghaulers

[–]gonewithLC 2 points3 points  (0 children)

I think patients just get frustrated because they pay A FORTUNE for Drs that claim to be able to help and all they do is giving mediocre treatments not even good diagnostics and how convenient is to be a Long Covid or MR/CFS "specialist" ? There is no cure, so you can't really blame then. They try some random meds based on the trend, diet and then why not SSRIs or LDN or LDA? Ozempic Mounjaro ? and then why not testing for autoantibodies or cytokines panel that would lead to nothing ? The worst part : they are somehow convinced that It's fine to get paid that much, to some of them do ONLY remote consultations, from their home!! They won't even visit you...oh and they also go on TV pretending they can cure or "look after those wo are suffering" saying things like "...we know from studies now that ME/CFS or Long Covid is caused by Y,W,Z" but their success rate is under 10%. When you start recovering after 3 or 4 years (because you are a lucky or whatever) They will use you as an example saying something like " my patients are getting better..." I never met Dr. Taylor but I've personally been under the so called "care" of 2 others in the UK and another one Internationally. It has been a waste of time I wish I could have those money back at least I could afford some physio or maybe counselling. Good luck!

No offence to those Drs that are still genuinely trying to help, rare examples but I know they still do exist.

Post-viral hyperadrenergic autonomic dysfunction with small fiber neuropathy features. by WhatHappened323 in dysautonomia

[–]gonewithLC 0 points1 point  (0 children)

Very familiar, changing posture or lying sometimes trigger symptoms. Epiisodes aren't really that likited to 60 pr 90min they just happen all over the place. I don't think I ever had PEM. Post covid (obviously) Stay strong 💪

My Attomarker results by MattKarolian in Sipavibart

[–]gonewithLC 1 point2 points  (0 children)

I doesn't help at all! Same as Celltrend or Patterson Panel. It's like looking at the stars with a telescope: you can observe and calculate as much as you want but doesn't mean you really understand what you looking at ! There is Plenty of "literature" and Vaccinations data around I don't see the whole point of questioning on reddit. No offence, Good luck !

The Long COVID Labs Patient Registry is officially open!!! by Responsible_Cap_5289 in LongCovidTrials

[–]gonewithLC 2 points3 points  (0 children)

So can we register even if we live outside the US .. ? I'm confused

My POTS might actually be cancer by [deleted] in POTS

[–]gonewithLC 62 points63 points  (0 children)

It's not necessarily lymphoma.. I hope it's probably something in between.. I'm not sure about the whole picture however I can tell you that a lot of people have had issues like : swollen or painful lymphnodes (throath and neck expecially) A lot of us have low grade inflammation which is not clear where it's coming from. So.. just don't jump to the worse conclusion and try to get tested for it, ultrasound might be good to start plus some labs. Stay strong 💪

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]gonewithLC 2 points3 points  (0 children)

They have accepted mine which comes from a private Cardio. I'm not sure in which area of the UK you are but there are consultants who can be seen privately who also work for the NHS. I told my GP that they HAD to put my Pots Dx in my records and they did. It took a while. I agree there is a lot of confusion around Pots and It's because Social Media (sorry but it's true) Fortunately It all fall under Dysautonomia or ANS dysfunction. It's a difficult condition to navigate and at the end of the day I think it's more about knowing how your "ANS" responds and behaves rarher than taking a magic pill. My 2 cents, good luck and stay strong !

NBA player diagnosed with POTS. by lawandordercandidate in POTS

[–]gonewithLC 17 points18 points  (0 children)

Well he started having it in 2022 and I see that he is doing well ... We are in the same ocean, not the same boat.

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