@LeslieJordancj@alvelda We should be allowed to have them draw & dump our🩸
I stopped giving my O- after my OG inf in Jul20 for fear of viral persistence (along w/ being sick for so many years)
After doing dry needling for PT, I feel a STRONG need to have some🩸removed😏
I don’t come here very often
But I will say this
I think the Wild Strain ‘20 LH’ers are a different breed
We were infected & given NO TX’s
No H1/H2, baby asp
Nada
Brutally sick
We had a desperation that most could not comprehend!
A drive to survive
I have #noregrets on my path
💪🏻
@dlingenfelter “Treatments like triple anticoagulants and apheresis show promise but are controversial and await validation.”
This is so frustrating on the eve of 2026😤
Literally HELP cured my hypoxia in 2 sessions then🤺vascular/dead limbs & then neuro inflammation
In 2021🤨‼️
#NoPatience
@sciqst@dlingenfelter I’m glad you were not here in 2021
LC w/ MC=“burgeoning AoR”🤣
HELP&TT=⚠️?
Best thing I ever did for LC was get my ass to🇩🇪in summer of ‘21 for HELP w/ Dr J & then variations of TT
Even going that soon, it was not fast enough for a yr out
Do you not comprehend the LC predicament?
@VinoNStrosGal I call balls & strikes w/ them!
I had a V frank talk w/ my PCP nurse early on & reminded her how they responded when I had a🦟borne🦠(not long b4 CV) vs LC
It sobered them right up, the compare/contrast🤯
It’s TOTALLY their insecurities🙄
But we could be a team &🏆y’all
So simple
@VinoNStrosGal As a 🔥20/OG strain LH’er, I am V familiar w/ the reaction to early patients
I had a neuro say in 11/20 I was🍀 to not lose a limb or die
The Fucker🤬
No, I wasn’t
I oftentimes wish I hadn’t been so💪🏻😏
I’ve been here for 5 yrs, but try to give my CNS a break from illness👓on X☮️
I’m nearly speechless after reading this amazing💪🏻 post I found on my “non LC Twitter”
I guess the algorithm caught me reading too much LC/SARS🤣
It truly resonated w/ me so I came over here to share & follow
BC I have felt THEIR (HCP’s) insecurities be turned in to THIS💩⏬‼️
WHEN PATIENTS KNOW MORE THAN THEIR DOCTORS AND GET PUNISHED FOR IT ⚠️
Let me tell you exactly what happened last night.
I was taken to the ER because my blood pressure tanked, 82/59 and I felt myself sliding into that POTS spiral I know too well.
No ambulance, no drama, just the reality of dysautonomia when the bottom falls out.
During triage, the resident asked, “What do you normally do to manage your POTS?”
I told him the truth:
“I get weekly infusions. They stabilize my volume and keep me functional.”
He raised an eyebrow.
“Weekly? How many liters are you getting?
And who manages those orders?”
I explained my protocol, calmly, clearly, the way you do when you’ve been doing this for years.
And then the tone shifted:
“Well… with that frequency, we have to consider the possibility of fluid overload.”
Fluid overload.
From a treatment I’ve been safely receiving for YEARS.
From therapy approved by my specialists.
From the very protocol that lets me walk into an ER instead of being rolled in.
So I pushed back, respectfully, but firmly.
“My ankles aren’t swollen. No shortness of breath, no wheezing, no crackles, no chest tightness, no JVD. I know my baseline.”
He paused.
Then, as if I hadn’t just explained everything, he started lecturing me on my vagus nerve.
As if I haven’t studied the vagus nerve along with this particular diagnosis every single day since the very moment it wreaked havoc upon my entire life.
As if I haven’t managed POTS, orthostatic hypotension, MCAS, vEDS, neuropathic pain, and autoimmune-like flares long enough to earn a medical degree in management and survival.
And this is what people don’t understand:
Invisible illness patients become experts because our lives force us to.
POTS.
Raynaud's
Lupus.
Sjogren’s.
Lyme.
Crohn’s.
Fibromyalgia.
MCAS.
EDS.
CRPS.
Long COVID.
Chronic pain.
We don’t get the luxury of not knowing.
We don’t get to forget.
We don’t get to be casual about our symptoms.
We learn every inch of our conditions because we have no choice:
• what destabilizes us
• what puts us down for days
• what medications actually help
• what actually relieves severe pain (for many of us, full-agonist opioids, because nothing else touches connective-tissue or neuropathic pain)
• what signs mean crisis and what signs mean “push through”
But instead of being respected for that knowledge… we get punished for it.
Labeled.
Dismissed.
Second-guessed.
Every other patient population is praised for awareness:
• diabetics who know their patterns
• asthmatics who know their triggers
• cardiac patients who know their warning signs
But chronic pain and invisible illness patients?
We’re treated like suspects for having the same level of insight.
Here’s the truth:
We don’t challenge doctors to be difficult.
We challenge them because being wrong about us has consequences we have to live with.
Stop mistaking patient expertise for arrogance.
Stop mistaking survival skills for attitude.
Stop punishing the people who have no choice but to understand their own bodies better than anyone else in the room.
We didn’t ask for these diseases.
But we damn well learned how to survive them.
@dryostradamus@D_Bone It’s good to see you back Doc!I’ll never forget how much you helped me 4 yrs ago🙏🏻
I’m managing life thx to low dose SQIgG. Which is, BTW, providing a shockingly similar result to that magic💉from THE trial in ‘21.
Bi-weekly use, 3G Cutaquig.
I am 💯wholly dependent, but #results
@ClausErnst A‼️
Drastic improvement after about 2 weeks.
But even with bi-weekly splitting of the dose, I feel a decline before it’s time to juice up again.
I feel like I am churning thru the antibodies faster if that makes sense.
IMHO, we should all be allowed access to try this treatment🙏🏻
Do you think you've had long-term GI problems since having Covid?
We are performing a study examining the characteristics of viruses, specifically persistent SARS-CoV-2 infections, in stool samples.
1/3
Do you think you've had long-term GI problems since having Covid?
We are performing a study examining the characteristics of viruses, specifically persistent SARS-CoV-2 infections, in stool samples.
1/3
@StuOstro And I followed you here so you can DM if you need any help.
There is a great neurologist at Laureate/SandySprings, Dr Cabrera-Kang.
He is🤓+kind, hard combo to find in that field.
Wishing you the best
Don’t let comment about “retirement”make you😡
Folks don’t get disability😏🙄
@StuOstro I’m really😢to hear this Stu.I follow you on my “non Long Covid” X account but want to reply here.
If the condition is a result of SARS2, there are a lot of us here to help.
You’re close enough in the ATL to get to @jfvaughnmd09 in Birmingham.
Get a disability atty to save spoons
@G_Commish@CovidCastaways@Perospumpeh Hi ya Gerald! Hope you’re doing well.
You know I have/will try a good bit to get better😂
Any thoughts as to why fairly low dose SubQIg could make such a profound difference in such a short time?
Is the immune system just that little bit off?
#NeverStopTrying
NEVER‼️💪🏻
@Ramyisback@Unknown_We8 Another data point, I started a different SubQ IgG, Cutaquig, and the benefits started in earnest by week 2 of only 6G.
It’s been a complete game changer for me & is the 1st sustainable therapy (vs FDA trials that end or going abroad for aphaeresis)
I truly wish I knew the “why”
@erikmoldwarrior@jillneimark@OldGypsyWoman@danaparish Eric:this is where I’m at now
My 1st exp came from the🏠on Lady’s🏝️ /SC last yr.
We moved back to GA, to the mtns, but had a similar HVAC issue in this house.(We were working on finding land to build our forever home & rented a beautiful house on acres)
HVAC’s are main culprit😱