Never say no way no how...............
Jul 26, 2009
Hello Dr. Bob. I am a 37 year old married heterosexual woman. In 1989 I was diganosed with an intestinal parasite after symptoms of fever, nausea, and diarrhea was given an antibiotic and got over it. Jump ahead to 1997 I was diagnosed with Mono, which I thought to be a little odd since I was then in my late 20's. I thought mostly younger people got mono. Was sick for about 6 weeks but recovered and moved on along. In 2001 after returning from the Bahama's I became so sick with a terrible headache, muscle weakness, loss of appetite. I could not move off the couch and could not stand to hear people talk my head hurt so bad. This went on for 2 months. I went to Dr's but they could find nothing wrong. That is when I had my first hiv test. It came back negative. Well I Finally got over that mystery illness which I now believe was some form of encephalitis. Felt great after that exercising, walking 2 miles a day, eating very healthy everything going good until this past April. Started having tingling in my toes and hands, muscle weakness, fatigue, loss of appetite, weight loss, tremors, low grade fever, dizziness, floaters. I cant work any more and basically dont feel like doing anything. I have been to see a neurologist who did a CT and an MRI both were normal, no signs of MS. My PC Doc has done several blood test liver test, sedrate, and several CBC's. All normal. I went to see an Infectious Disease Doc, had another hiv test Elisa which was negative, had a spinal tap which was normal. Had a viral load test, undetectable. Had a proviral dna pcr test, undetectable. Also had my cd4 and cd8's checked which were also in normal range. I am not a depressed person but this has really gotten to me. I dont have a life because I feel so bad all the time. I know that this is some variant strain of hiv that is not showing up on the test. Any way I will be going to the Mayo Clinic in about 2 weeks for further testing. They were very interested in my weird symptoms. Just thought other people might be interested in my story.
Response from Dr. Frascino
Sorry to hear you are having medical problems, but what does that have to do with the title of your question: "Never say no way, no how . . . ?" You have had negative HIV-antibody tests in 2001 and again in 2009. In addition you had an undetectable HIV RNA PCR plasma viral load and an undetectable qualitative HIV PCR proviral DNA plus completely normal T-cell subset analysis (CD4 and CD8). These tests are definitive, conclusive (and excessive). HIV is not your problem. And I know you don't want to hear this but here it is nonetheless: No way, no how! Certainly you may well have something but one thing is absolutely certain: that something is not HIV! I'm more than confident the Mayo Clinic will agree with my assessment.
You state you "know" you have a "variant strain of HIV that is not showing up on the tests." I can assure you that is not the case. You've had a million dollar workup, including many blood tests, CT and MRI scans, spinal fluid analysis and a thorough evaluation by an infectious disease specialist physician. All tests and evaluations have failed to identify a physical cause for your multitude of symptoms. Consequently there is an excellent chance you have psychosomatic illness. I would urge you to seek the help of a psychiatrist. Psychotherapy to help you accept the overwhelming and incontrovertible evidence proving you definitively do not have HIV could be the first step in recovering both your physical and psychological well-being. Once again I'm confident the Mayo Clinic will concur.
Good luck. Remember, HIV is not your problem. No way, no how!
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