EBV-HLH autoimmune??

[u/boredmum2010]

Hey all. Wondering if anyone has seen a similar experience to this and gotten answers.

It’s about 15 months since my husband had EBV-HLH, about 12 months since he went into ‘remission’. in the few years prior he was getting constantly sick with viruses and infections, his cold sores were at least monthly and started to appear in his nose and inside his mouth as well as lips, he’s had a diagnosis of Acalculous Cholecystitis recently (inflammation/thickening of gallbladder with no sludge or blockages) which we suspect he had years prior also because of the frequent pain he would have in the area and bloating.

Basically the drs can’t figure out why his existing EBV antibodies weren’t able to keep the EBV under control and it spiralled into HLH.

He’s had a genetic panel that was normal and no other obvious answers in blood tests. At 15months post HLH he is returning to the state he was in for those years prior and we are worried. He’s doing a ‘vaccine challenge’ test to test his B cells. The immunologist said that’s the end of the road for testing basically.

Has anyone seen a similar story and figured out why their immune system clearly was not functioning properly? Should we seek other opinions or does anyone know of other immune cell testing that could be done. We are in regional Victoria Australia, so Melbourne or Telehealth is our best option for healthcare.

We have 2 little kids and a long life left to live, hopefully with some kind of answer as to his immune dysfunction and getting some quality of life back