Plasmapheresis Disappointment

Hey Everyone,

For starters, soon I have a meeting with an immunologist at a good hospital hopefully followed by a neuroimmunologist so please wish me luck! I want to preface this by saying that I hope we will find a treatment soon. I am posting this in hopes that maybe my findings can help someone else now or in the future.

So far, the only thing that has helped reverse my sexual dysfunction is Cyproheptadine. I couldn't keep taking Cypro because it worsened my OCD and brain fog to an insufferable level.

I would say that my primary symptoms are: Sexual Dysfunction (No Libido, No NPT, ED, Reduced Sensation in that area), Anhedonia, Burning Sensations in the Chest, Brain Fog, Visual Issues (blurred vision, floaters, night blindness), DPDR, Malaise, pains in pelvis/chest and lower back, OCD/Tics, inability to feel drunk, medication sensitivity– tbh I could go on forever haha. The symptoms wax and wane, but the libido is most stubborn and theres always something going on. No symptom-free days.

My symptoms started slowly in my teens while I yo-yoed on and off of SSRIs and antipsychotics for typical Anxiety/Depression/OCD– mainly the emotional blunting and low libido. Something happened in 2019-20 that just made them worse, and then the other symptoms like visual problems/hypersensitivities/DPDR/sensory issues started in 2024. I am in my mid-20s now.

I stumbled across INIDA in October of 2025 and after 5+ years of not having any leads as to whats wrong with me or how to fix it, I took a leap of faith and went for autoantibody testing and plasmapheresis based on their research paper. I do believe that they are on to something in the sense that there is a subtype of PSSD and other post-X diseases that are autoimmune/neuroimmune.

The first test I did was a commerical antibody panel. I had many borderline antibodies such as Anti-D2, Anti-MA, Anti-Purjekin, etc. The two that were strikingly high were: Strep A and Anti-Microglia.

Then, I did the GPCR autoantibody panel and almost everything came back markedly elevated: alpha/beta adrenergic receptors, muscarinic 2-5, ETAR, A1TR, ACE2, TSHGS. I also found out I had extremely high COVID-19 spike protein in exosomes. Unfortunately these are still an emerging science so they can help paint a picture but aren't yet diagnostic on their own.

So then I went to a private clinic to do 5 rounds of plasmapheresis (it's all I could afford). The jet lag of ~8 hours brought back my libido for a few days but caused a flare up for the rest of the symptoms. It's been a month and my sleep still hasn't fully recovered. I assumed that the plasmapheresis would really help, since theres some evidence in my case in my pointing towards autoimmunity. It didn't do very much, and I had my last session in the end of January. Following that, I had the worst flare up in a long time– irritability, sensory sensitivity, burning sensations, chemical sensitivity– I couldn't even drink a soda! Thankfully its calmed down.

I left the clinic with a diagnosis of Autoimmune Dysautonomia and Long Covid. Since then, I found out that I have POTS/Orthostatic Tachycardia after doing a test with a doctor. I'm not sure whats going on with me, it just seems like the issues are piling up but I'm trying to stay positive. I am hoping to a trial of Prednisone or another immune therapy they deem appropriate to see if I can get symptom relief– even a 50% reduction across the board would be life changing.

Right now, I am taking Minocycline and LDN for the suspected brain inflammation. It's been 2 weeks and its been fine. I got so hungry in that first week. It hasn't shown any benefit yet, maybe even some initial worsening. I guess we'll see soon how things go.

I would love to hear your words of encouragement, advice, theories, and experiences with immunotherapy if anyone here has had it.

Thanks.