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How to get treatment treatment with non reactive HIV antibody blood result?
Apr 10, 2012

I am writing in a state of desparation. My husband has progressively gotten sick over the past year. Late in 2010 in developed a long standing cough, respitatory illness. Which then progressed to general malaise during 2011, by May 2011 he began complaining of weakness and fatigue (muscle), doctors visits only produced a potential ear/sinus infection. By October 2011, weight loss was extreme with muscle loss in neck and shoulders and swelling in ankles and feet. Symptoms have since progressed to proximal muscle loss weakness and he has been diagnosed with polymyositis. He does not display all classic symptoms except inability to raise arms above head and inability to stand, he has since continued to lose weight and muscle. He has placed on prednisone 60mg/day. The only advantage of this medication is increase in appetite whereas previously appetite was not strong. He was not tested for HIV until we requested it in February 2012, the test came back anitbody non reactive, however his lymphocyte percentage was 15% (very low). Prior to this blood test, he received extensive blood tests during a 3 day hospital stay which included anti-antibody tests for autoimmune disorder, nothing was found. Muscle enzymes tests revealed high CPK...he was also noted to have very low vitamin d and very low testosterone. CT Scans revealed larger lymphnodes in chest cavity and around colon, and slightly inflamed appendix. Any doctor experienced with AIDS should be able to detect a dangerous condition with low lymphocytes, low testosterone and severe muscle loss. His February blood work showed low protein levels which indicate poor nutrition. He does not eat meat, which also is an issue, however he has begun whey protein supplementation. As a result of the stresses of the sudden onset of his condition, I have since Jan 20 been experiencing a long list of symptoms, from deliriousness, depression, unexplained weight loss, muscle weakness, extreme fatigue, lessened appetite, joint pains, digestive issues, hemmrrhoids, vaginal yeast infection, stomach discomfort and bloating, I too have had an HIV test which came back non reactive. So all doctors I see tell me this is not infectious and they will not explore potential AIDS further. We both were sexually active before marriage, and the time frame is consistent with developing full blown AIDS. During recent blood work I've had done my lymphocyte count is steadily dropping, down to 28% from 33%. I'm trying to be proactive although I'm being told it's all in my head. We have lived healthy lives until this point, and perhaps that's why the HIV virus is not appearing, or that we are not displaying typical symptoms yet due to it being early in the disease (ex. fever, night sweats, more opporunistic infections etc...) Polymyositis in itself is considered potentially from a viral infection or immune deficiency, cancer etc... I am afraid that the doctors are misdiagnosing us and overlooking potential wasting syndrome for both of us, my physical symptoms of weakness, joint aches, uncoordination, shakes, digestive issues, skin rash, break outs are some similar to his except for hemmrrhoids and vaginal problems. I'm begging anyone to assist in finding a doctor that will at least hear me out and consider the possibility of this being a unique case wherein we may have progressed to the point where we are so ill, that the normal HIV antibodies cannot be detected and perhaps the Virus may be in our organs or lymph nodes. PLEASE HELP, I feel that the time is running out for both of us.

Response from Dr. Henry

Recommend repeat HIV 1/2 test including possibly direct HIV test (plasma HIV level)-if both are negative repeatedly then extremely unlikely for HIV infection to be causing those symptoms. KH



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