Fellow Rochesterian please I need your expertise
Oct 25, 2009
Hi Dr. Bob I have donated am a fellow Rochesterian writing once more: I have been shuffled throughout the medical system here in upstate Rochester, NY with my primary concern being exposure to someone who was HIV positive.
I was previously an extremely healthy male and had a sexual encounter with another male who later by email informed me of his HIV+ status. Approximately 3 months after the encounter. There was Unprotected oral and protected anal however the condum slipped off as he was taking the condom off. I was the receptive partner and do not fully recall if the condom was intact, as i did not do a through inspection of it, but do remember that it slipped off prior to removal off his penis. In late November of 2007 approx 5 weeks after the exposure I presented with complaints of fever, night sweats, generalized lymph node enlargement and aching nodes, extreme aching joints starting in my knees and then to the hip and lower spine, extreme blephritis with discharge in both eyes, change in bowel movements loose and mushy,foul smelling stools as well as a change in color, dry mouth and taste perception, coated tongue starting in the back of my throat then eventually the entire tongue was whitish and pale needing brushing and scraping daily to remove some type of film/plaque, extreme fatigue, some headaches mainly behind my eyes and in the temporal area of my head, and mild bilateral hand tremor, and alteration in sleep not being able to stay asleep due to being woken by the night sweats and pain in my knees. I went to my primary immediately who did a base line Eliza ab test and PCR down to 400 copies was run. The results were HIV non detectable. Repeat HIV ab test at 8 and 12 weeks non detectable, at 4 months PCR sensitive down to 50 copies and Hep C ab and PRC all non reactive. At 6 months we repeated HIV ab and DNA pcr and Hep C pcr non reactive. I continued to be symptomatic. A Lymph node biopsy of the right inguinal node was done to r/o leukemia or lymphoma. Both were negative, but reactive. My last 2 HIV ab test was approx 12 months and one 24 months after exposure and were again non reactive. Lymes neg, parvo neg, RA factor <20, stool no parasites CXR unremarkable no acute cardiopulmonary process, X-ray of the lower spine reveals Spondylosis of the lower lumbar spine. Current WBC 3.9, Neutrophils 44, Lymphocytes 45, platelet count 200. Sed Rate 7. T Cell count 625. and ct4-ct8 1.6. ANA neg, c-reactive protein 0.2. Have been immunized and good immunity to Hep B and Hep A. CMV was positive and EBV was positive but the physician found it difficult to interpret stating that he could not tell if it was a past exposure or reactivation as he did not remember Iga and Igm and admitted to not being an immunologist. Neg TB Ortho dx: Idiopathic synovitis bilateral knees, possible Reiter's Syndrome ENT dx: Questionable Sougrens Disease or Sicca syndrome due to the dry eyes mouth and conjuctivitis. Opthomology: Concurs with ENT with dry eye but no retinitis on slit light examination. Infectious Diseases: Relates some of this to EBV although was negative for other STD's but have had a history of past exposure to chlamydia and was treated only for 7 days with doxycycline. Dermatology: Early in my symptomatic phase recognized a lichen planus, however after second consultation approx 9months post exposure derm now thinks it is now resolved.
Subjectively: I continues to complain of mild residual fatigue, mild aching in knees, continued bowel irregularities frequency and consistency of stool, mildly coated tongue sore gums, a few outbreaks of oral cold sores which I have had in the past but these were like three out breaks within a few month time span not my usual baseline, also had a one time episode of retro orbital headache behind my left eye lasting 3 days.
Objectively: Oct /09 I still have minimal swollen lymph nodes not tender in cervical area and bilateral inguinal region, V.S. all WNL. CBC with Diff WBC's have now climbed back into the 7.5K range from 3.9K , I have slight changes in my a/g ratio and anion gap is off don't remember the values off hand, blephritis bilaterally continue with discharge, minimal conjunctivitis, HIV ab non detectable.
Questions: My concerns in light of the Sougerns could this phenomenon be causing any alteration in antibodys interfering with Eliza not being detected due to a possible auto-immune disorder. How certain is it that the EBV could be this problematic for such an extended period? With T-cell at 625 although I realize this is WNL or could this be reconstitution of the immune system post seroconversion as well as a low cd4-cd8 ratio, although WNL still on the low side. Another concern is a recommbinate strain of hiv other then B-sub type but another subtype of M, that traditional Eliza is not detecting we use the taqman methodology here in rochester acm labs not abbott testing methodology which claims to be more sensitive to non b types. This partner also informed my after the fact that he was addicted to crystal meth, and had been part of serveral sexual partners, and sex parties was also from San Francisco. This was all told to me well after this symptom complex presented itself. I have been tested for HIV 1 and 2 and O type. Am I looking in all the wrong directions or perhaps you could give me any other recommendations or specialty tests that can finally put the HIV concern to rest. I also work in the medical field so I am quite versed at what signs to look for when there may be a possible exposure. I know Dr. Bob that I am definitely not at my baseline and I don't know where else to turn to at this point as every physician states there is no possible way I would be HIV positive by Eliza 23 months after exposure if indeed transmission had occurred. I know I also did not experience the flu when I was having my initial symptoms as I had no respiratory symptomotology. Can I come to your research site for culturing, or other testing that may be more definitive as nothing in science not even Eliza is a 100% perfect. I am reaching out to you. The Doc's here are good at treating HIV once diagnosed but will do nothing other than traditional testing despite my continued gastrolenterolgic, eye, arthritic pain, and enlarged lymph nodes, night sweats on and off, and no im not one of the worried well. I am just sick and getting no where. Thanks again your always an inspiration.
Response from Dr. Frascino
Hello Fellow Rochesterian,
First of all, I do believe you have "something" going on; however, I'm absolutely confident whatever it is, it is not HIV related.
Beginning first with your HIV risk, your risk (unprotected oral, protected anal with the condom slipping off as he pulled out of the love canal) is very low.
Next, your symptoms began five weeks after the exposure. This would be somewhat late for HIV acute retroviral syndrome symptoms onset (usually two to three weeks after primary HIV infection).
Next, your HIV testing has been repeatedly negative (including multiple ELISAs for HIV 1/2/O, quantitative PCR RNA and qualitative PCR DNA out to two years from the potential exposure. Rochester-Guy, you just can't get any more negative than that!
You've had the full million dollar (almost an accrue figure!) workup, which has revealed "reactive" lymph node biopsy, spondylosis of lumbar spine, EBV exposure/reactivation, idiopathic synovitis of knees, possible Sjogrens syndrome and lichen planus. It appears many of your symptoms have resolved or at least significantly abated over the past two years and you are left with fatigue, achy knees, bowel irregularities, blepharitis and several bouts of herpes labialis.
Although you've already seen a range of physicians (GP, ENT, ophthalmology and dermatology), I would suggest you consult a rheumatologist. Your rheumatoid factor and antinuclear antibody (ANA) are negative and sed rate (ESR) is not elevated. Yet there appears to be some question as to whether you have some type of autoimmune process going on. (You mentioned Reiter's syndrome and Sjogren's syndrome). It would be worth confirming one way or the other whether you have a rheumatological and/or autoimmune problem. By the way, the types of illnesses you mentioned would not affect the validity of your HIV tests.
With the extensive and excessive HIV testing you've had done, why are you continuing to perseverate on HIV/AIDS as a potential diagnosis? There is overwhelming and incontrovertible evidence that HIV is not your problem. Continuing to chase after a disease you could not possibly have is counterproductive. Your fears of HIV may be contributing to your fixation with this disease.
You asked for a recommendation for additional specialty tests for HIV. Absolutely no additional HIV testing is warranted. You've had far too much and way too many already. You also state, ". . . Every physician states there is no possible way I could be HIV positive . . . ." I absolutely agree with them! Coming to the Frascino Medical Group for culturing or "other testing" would not be helpful. If you continue to have difficulty accepting the truly wonderful news that you dodged the HIV bullet and are definitively and conclusively HIV negative, you should seek psychotherapy (counseling) to help you accept reality. You may not be a "worried well," but you're definitely worried about the wrong diagnosis!
Good luck. Remember, HIV is not your problem!
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