u/Cautious-Impact22

Anyone else doing like 140g or so per month- it’s weight based but you get my point.

i have CVID and Autoimmune Encephalitis and i can’t find other AE patients and the CVID people just do replacement amounts.

Anyone here? The only high dose person i know is SFN, i’m looking more for people that have immediately threatening stuff. I got one friend with GBS i relate to him decently, and another with myasthenia gravis, i can sort of relate to them but they’re a distant friend.

There are several antibodies that cause AE. Hers was Anti-NMDAR, I had a different antibody, but same outcome.

They think they know how mine was triggered.

I have Common Variable Immune Deficiency which means I went my entire life with 70-80% of my immune system missing.

I even managed 7 years in the Army coughing up blood from the chronic pneumonia and didnt die!

The chronic inflammation left made my blood brain barrier compromised and resulted in Autoimmune Encephalitis. And just like in the movie on Netflix Brain on Fire this caused: seizures, strokes, paralyisis, aggression, mania, and more.

But i wasnt saved as fast as her. It took years and all that saved me was they continued to do large bursts of steroids meaning i was in and out of these states of madness all 5 years.

Proof

Hi! I never thought this would happen. Really had just planned to die lol. What should I do?

I mean specifically that brand? I’m debating one for my sons 3rd xmas. Also if you did would you recommend the 3-4 or the 4-7? He’s a big boy and is wearing 4t clothes at 2 right now.

I started having seizures about 1 year after I got out of the Army in 2017. They wrote them off as either from TBI or maybe an infection/virus. We started me on Keppra. But even at 3000mg the keppra couldn’t stop them totally.

Then i started having bouts of paralysis. Inability to swallow food, stuttering, memory loss.

We ran an Ana Anti-nuclear abby and it came back 1:3200. Off to rheum i went. I was pos RNP, anti-dsdna, and my anti ro was 270a still i wasn’t diagnosed. They said it was too neurological.

I was sent to a MS specialist- they started me on baclofen and my first year of regular MRIs began.

I wasn’t aware of it then, but looking back it’s easy to see by the end of year 3 I developed bouts of mania and psychosis they large bursts of prednsione resolved for a short time.

I nearly died several times. Medical trauma is a real big issue for me.

But it’ll take me days to tellnyou the long 5 year story of work up that landed my dx (lots of spinal taps and blood patches were involved).

Eventually i met an Immunologist who dx me with CVID- Common Variable Immune Defiencey. I had gone most my life with 70-80% of my immune system missing. They call this an in born error of immunity.

The chronic inflammantion compromised my blood brain barrier and led to immune dysfunction resulting in CNS lupus thar caused autoimmune encephalitis.

So we started replacing the immune sytrem i wasn’t born with by using donor plasma, and even more plasma to dislodge the antibodies attacking me that were in my FcRn.

We started Cellcept and thought it was best to wipe out my remaining 20-30% immune system as it was misdirecting its attack on my cns anyway and the plasma would mostly makeup for the loss

We started plaquenil as an immune modulator.

And ive spent the last 1.5 years on prednisone as a safety measure (hopefully off soon).

2 months ago after 2 years of high dose ivig with an inhome nurse every two weeks over 16 hours done over two days i was able to get of Briviact.

I have been seizure free 2 years now as of this coming thursday.

I dont know how many CNS lupus patients /AE patients are out there right now just slipping away into their seizures but i wanted to tell you my story

This is going to be a long wild read but I’m on bed rest post a major surgery with too much time to think and something is really bothering me, so I need to vent it.

I know someone “weaponzing” AI to falsify a seronegative illness and in my view sort of copy-cat my illness and harass their doctors.

I have a rare disease, I have Common Variable Immune Deficency & Autoimmune Encephalitis. Because I was a case study and went through a lot of lesser known labs, procedures and saw more uncommon specialists its pretty common for me to get a few messages a week from strangers for medical guidance.

Im really empathetic to that as someone thats been on that side of things. You start to lose trust in this broken ass system, and start to learn medical care isn’t just given you have to wage a full out war, at least thats what happened in my case.

Anyway so as weird as it sounds people will send me their info, their labs and ask me for ideas of where to turn to next.

One day this person who I had one mutual friend in common with messages me for advice. They send me some photos that are taken in a bathroom, you can see a wet tile and drain in the back and their skin is red. They tell me they think they have Ehers, POTS and MCAS.

My feedback was if you had POTS and just showered this is common to have you heart race a bit, and have blood pooling from leaking valves in the lower extremities. I recommended seeing a genetist for proper diagnosis of Ehlers and to clear for more concerning variants via a genetic panel, to see an allergist for the possible MCAS.

Im not even sure why they sent me photos of their labs but they were all normal, so it was odd like here view my unremarkable labs. When I made the above suggestions the person seemed angry and defensive but I wrote this off as someone whose just burnt out with the medical system.

I went to view their FB page and I saw that it was all fundraising and posts about random seemingly unrelated tests and links to their Venmo, Cashapp etc.

That week I made a educational video about why I take such a high dose of IVIG so often. I explained the FcRN and displacement of antibodies and I think I did a really good job. They were actively commenting and asking questions in the live which I really appreciated feeling heard and having someone curious.

Afterwards they messaged me that thought they have Primary Immune like me and also needed IVIG. I asked why, did they have alot of infections etc as nothing like this had been brought up before.

They said no to infections and they didn’t really clarify why they felt this way but I explained its very easy to diagnose you need to go to an Immunologist and have the start with your immunoglobulin levels and a vaccine challenge. 

They did get to an immunologist but all their levels were normal. This is when they sent me dozens of screenshots arguing with their medical team via a portal about rare occurrences of PI without abnormal labs and it was very clear it was all copy and past AI arguments they were doing.

They then took to FB saying because they had normal values the immunologist wouldn’t write a referral for a vaccine challenge but if they could pay it out of pocket they could run it.

They fund raised the money and they did pass the test. It wasn’t with flying colors but it wasn’t a failure either. Mind you IGG makes up 70-80% of your immune system you can have low everything else and the redundancy of the others will cover down and you generally wont need replacement. Just to explain how crazy this is.

That week I went to a conference for PI patients called Mosaic by the Immune Defiencey Foundation and I’m obviously posting about it at the time. That’s when they post #PIawarness and similar hashtags claiming they have it after seeing me posting for awareness. But we both know they don’t have it.

The doctor rejected a PI DX. And so they send me another bundles of medical chat arguments using AI to fight their medical team, who I imagine is fucking exhausted. 

They decided if they can’t get a PI DX they’re going to try to go for a totally seronegtive (not even ANA pos) autoimmune derm DX.

Months go by and they message me they got approved for once a month small dose of IVIG.

They then post an AI generated mock heavy metal band album cover called “Seronegative” with their face on it. 

I guess I feel a few things about this:
I feel a little exploited. I feel a bit angry that I genuinely almost lost my life and this person is clearly full of shit, although I’m slightly empathetic that no mentally well person does this so I’m sure they’re struggling in life in general. 

It also never occurred to me AI would be used this way.

When I thought about the future of AI helping work with doctors for faster more accurate diagnosis I thought it was amazing. I thought with their workloads and human flaws having AI as a tool in the future will help. I did think of downsides like Insurance abusing it to find any cause for denial but then i read about people using the AI back for approval.

I never considered someone using AI to work the system for a false illness like this or to harass their medical team…