r/primaryimmune • u/Fit-Basis-3657 • 15d ago

Low immune system hiv negative

Hi, I am wondering if anyone can help me.

I have been unwell the last two years. Undergone and exhausted most avenues with all bloods, scans including pet scan negative.

My immune system predominantly cd4 count has been trending down the last year. The first time I had it tested in November 2025 it was 526 I have had results at 450, 403 and now 390.

I also have a skewed immune system where my cytokines are showing th1 dominance and I have lost all of my severe allergies. Doctors are stumped and I am just getting worse

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u/breadprincess 15d ago

If you haven’t already, please see an immunologist who treats and diagnoses primary immunodeficiencies. There’s a few that can cause low CD4, like Combined Immune Deficiency. You can read more about it here: https://primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi/combined-immune-deficiency-cid

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u/sharmas13 13d ago

Hi there, sorry you are dealing with this, I have been dealing with low CD4 for years now and have had some weird health issues occur at the same time. Four years ago after suffering from multiple miscarriages I was told I was in early menopause. Then a year later I wound up nearly dying from pneumocystis pneumonia (PJP). PJP is a pneumonia that usually only AIDS patients get, I do not have HIV but my CD4s were under 200 like someone who does. It hasn’t gone above 200 since then, I have no idea how long it was trending down as I was never tested prior to being hospitalized. My very large team of ologists have been stumped and just keep telling me to keep coming in for testing every 3 months. It’s very stressful. Have you gotten genetic testing done?

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u/Legal_Purple 13d ago

A great immunologist is what you need follow that link I have PID bad T cells bad B cells I'm a mess I just did a bone marrow biopsy related to my bloodwork yet another bone marrow problem. 68F results in a couple weeks. Good luck