I'm a 48 yo Caucasian male with idiopathic immune deficiency (low WBC, T Helper and no IgE). I also have idiopathic osteoporosis, tinnitus right ear with occasional vertigo (also idiopathic). History of 3 year chronic fatigue 1990 - 1993.
I've been struggling with upper right abdominal quadrant discomfort since dramatic onset in June 2004. Initial symptoms: Fatigue, stabbing pain in lymph nodes (groin/armpits). Two weeks later: Nausea and pain under right rib cage. Cleared over time but pain remained and bloating after meals began. Pain worse at night. Workups were negative. Yodoxin (Iodoquinol) & Paromomycin (Humatin) yielded 100% relief but pain came back worse upon protocol completion.
Following 3.5 yrs included 40+ physicians and alternative doctors, upper endoscopy and ongoing stool and lab work. Saw UCSF infectious disease doctor and was dismissed. C.diff and Blastocystis Hominis was found by a GI doc and Metronidazole (Flagyl) prescribed. Infections eventually cleared but symptoms remained.
12/07 the pain became much worse and began to burn very intensely accompanied by light colored stool and two weeks of intense nausea. A month later the burning began radiating up the right back to the right shoulder. Burning began to taper off by mid spring 2008. I had MRI, CT scan, colonoscopy, endoscopic ultrasonography, HIDA and numerous stool and lab work. All unremarkable. During 2008, I tried Praziquantel (Biltricide), Hydrogen Peroxide IV series, Alpha Lipoic Acid IV series, Colestyramine (Bile absorber) and Nitazoxanide (Alinia) 3 weeks. I only had temporary relief from the 17 hydrogen peroxide IVs and the Alinia yielded about 25% temporary improvement during the second week of administration. The rest did not do anything. During September/October 2008 I lost about half my hair - it fell out very rapidly and has not grown back. Six months after the intense burning, my urine was cloudy for a month with negative cultures. Then in the fall of 2008, the urine was markedly darker than usual. Pain had spread to include occasional sharp stabbing pains in kidney areas. Ultrasounds yielded dilated renal pelvis first on left kidney in October then on right kidney in January. This had never been observed in previous imaging dating back to pre-infection.
In early 2009 I have had occasional bouts with nausea and fever lasting a few days. In the past two months my legs have become progressively more swollen from water retention (as well as my abdominal area). Something interesting happened in March while doing an off label protocol with Vancomycin Hydrochloride (5cc oral QID); the pain around the liver improved while I began having very sharp pains in the left kidney area. It was as if the infection was being cleared out in the GI tract and simultaneously migrating to the kidney to get away from the drug effect.
Recently, I have tried a course of Nystatin and Stromectol (Ivermectin) with no noticeable improvement. Pain in daytime is less and better from strenuous exercise. Pain at night is much worse and interrupts sleep. I sleep with electric tens unit and sticky pads around abdomen to alleviate pain, however when I move, sometimes the electrical chords come off and I wake up from the pain which intensifies within minutes.
I have been to UCSF (infectious disease and hepatology), Stanford (hepatology) and Mayo Clinic in Phoenix (hepatology). I have seen three other infectious disease doctors but they act clueless and unwilling to believe me or to help since nothing has shown up in rudimentary lab screenings.
In my opinion, I need to find a specialized research institution like CDC or a university lab (immunology or infectious disease) where someone might take an interest in my situation. I feel time is of the essence since the kidneys are being affected from this systemic situation. I feel with no detectable levels of IgE (multiple labs), my immune system might be lacking key components to fight the infection effectively.
It may be I need a course of IV antibiotic followed by an anti-protozoa drug, but it would be best if I could get a diagnosis first.
I pray whoever reads this post might have a solid reference for what to do next - maybe I'll get lucky.... Thank you for reading.
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