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Okay so to give a bit of a back story, I am exploring the possibility of having CVID. It's a common comorbidity of EDS, obviously, and I've always been sickly. I have chronic bronchitis but I'm not a smoker and never have been, I had chronic ear infections well into my 20s, and I'm always getting the flu, staph infections, and other infectious issues. I also have other autoimmune issues.
I don't have any health insurance, and I live off of donations, so my healthcare is extremely limited. So I have to figure out a lot of this on my own. So I just decided to ask my doctor for a CVID test. After a messy few months, the lab ordered the genetic test for CVID. When it was negative, I contacted the Immune Deficiency Foundation to ask for help. They told me that we haven't found all the genetic markers for CVID, so it could be a false negative. They also recommended I get my IgA ,IgG, and IgM tested.
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So I did. My IgA and IgG were normal, but my IgM was high. Normal IgM levels are 26-217 (mg/dL), and my level is 272. From what I understand, IgM indicates acute infection, but I'm not symptomatic right now. On top of that, I recently eradicated an h. Pylori infection, but I'm still symptomatic. I still have daily abdominal pain that is almost constant at this point, and it keeps me awake all night and into the afternoon. I'm only able to eat one meal a day on most days, and I can only finish about half of it. I live under my heating pad, and I would take a Tramadol every day if that was reasonable. I tried calling the Immune Deficiency Foundation again, but they haven't returned my calls yet.
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I'm just tired of all this, and I have more questions than answers. Every effort I make is like pulling teeth, and I'm more confused than ever. If anyone knows where to go from here, or at least knows what's wrong with my stomach, I would really appreciate some concrete ideas.
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Note: I know that giving medical advice over the internet is frowned upon, but I don't have another doctor appointment until November. My doctor also tried to refer me to a local clinic that employs specialists. But that clinic, which I have been to before, is suddenly saying that they don't accept uninsured patients. I would just really appreciate something helpful.
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