Okay so, just to reiterate the precursory information from my other posts, here is my introductory history:

I'm a 36-year old female with Ehlers Danlos syndrome (EDS), psoriasis, vitiligo, and some kind of suspected immune deficiency issue. I have no health insurance and no income, but my SSI hearing is in March. I had constant earaches well into my 20s, and I still have chronic bronchitis even now. I always seem to get these infections from “nowhere.” I don’t catch them from anyone. I am a lifelong nonsmoker, and no one smokes in the house where I live. These respiratory infections just happen. And I seem to be worse than other people who have it, and I stay sicker for longer than others, too. I’ve also had 3 to 4 staph infections (one of them was MRSA), a dental abscess (my dental hygiene is good), and constant infections of the skin and lay parts (no STDs, STIs or foreign bodies). I also have two different autoimmune diseases, psoriasis and vitiligo. Back in August, I stayed sick for 3 months, even after 4 different medications, and I was so exhausted I could barely stand up. Neither an urgent care doc or ER could figure out what the issue was. Then I got bronchitis (again) in November, and that lasted a month as usual. I have also been dealing with an h. Pylori infection and a fungal skin infection since 2008. These issues have persisted despite multiple treatments and taking every possible precaution. The symptoms just come right back as soon as I take my last pill or apply my last swipe of cream. It all just makes me think.

So despite my lack of resources, and after an unholy stressful mess, I managed to find an immunologist and get tested for CVID. And literally EVERY SINGLE titer was totally normal. (I also got both a blood test and skin test for every possible allergy, and that was normal, too  even the control irritant for the skin test.)

Click here for the CVID test results.

Other than what you see there, the only other notable value was my platelets, which were borderline low at 136 L, with a reference range of 140 – 400 thousand uL. 2 different doctors have seen these results, and both have agreed that they are unremarkable and do not indicate CVID.

So then I called the Immune Deficiency Foundation, and they said it might be Selective Antibody Deficiency. So then I called my immunologist back, and they said they weren’t going to do vaccine challenge testing for me because my titers are normal. So then I called another immunologist – the same one who refused to see me before because my “case is too complicated.” The first time I tried to see them, they told me that they don’t see CVID patients. I confirmed multiple times from multiple sources that this is a lie. Now they’re telling me they “don’t see self-pay patients.” I confirmed this was also a lie, and when I confronted the receptionist, she quickly mumbled something that didn’t make any sense, just to get me out of her hair and off the phone. I have raised more than enough money in donations to pay for the appointment in cash, and I told the receptionist this several times, but she refused to listen. I chose these immunologists because they claimed to be EDS-friendly. Apparently that was the wrong choice.

So now I’m at a place where I have no immunologist who is willing to help me, and I am no closer to a diagnosis. I am confused, exhausted, and sick of going in circles and getting nowhere. I don’t know what I’m supposed to do. I just want to cry.

i have searched the IDF website, ordered the book and read through it, and Googled everything I can Google. I don’t know what I’m supposed to do. I don’t know where to go from here. I’m at the end of my rope. Please help.

Thanks all.