Sorry for the long winded email, but I hope that you can find time to read this.
Dear Dr Bob,
PLEASE TAKE ME SERIOUSLY when you read this. I'm a 42 yr old male, married w/3 children living an upper-middle class life in Maryland. In June of 2006, while on a business trip to Poughkeepsie, NY, I had a one night stand with a woman I believe to be from Africa. She said she had just come to the United States and was in school, I believe she spoke of travel to Europe as well, but I don't have much more information as heavy drinking was involved. Two weeks to the day after our encounter I had a 2 day illness that consisted of a sudden attack with swollen lymph nodes and glands, fever and extreme fatigue. I had this illness while on vacation with multiple family members sharing a house in the Outer Banks. During that week my entire immediate family had a 2-3 day illness that consisted of high fever, vomiting and diarrhea. There were several extended family members who came down with this same bug during the week. I didn't think anything of this at the time because I was unaware of anything about HIV.
Move the clock forward to early November of 2008. I had been living a happy, healthy life. Then I started having night sweats. I had never been someone who sweat. In fact I would rarely sweat ever, even in the heat. Now I was having night sweats that would wake me up. Later in December I started having very weird red rashes on my forehead, redness of my face and ears, burning skin, itching skin, sudden ringing in my ears, sudden blurred vision, all kinds of vision problems (seeing phantom shapes and colors), chills, diarrhea, fevers,swollen lymph nodes in neck, extreme/profound fatigue, several incidents where my cognitive skills were absent (10 minute periods where I could not remember simple things like birthdays or what day it was). Also I went to a local hospital with swallowing issues which they diagnosed as oral thrush in the back of my mouth to which they put me on meds. These issues lasted on and off through December 2008. During this time I had a Rapid HIV 1/2 test at a local county health office in Frederick, Md. The Rapid HIV 1/2 test was negative. Still concerned I went on-line and used an on-line service who collected blood at a local diagnostics center and tested for HIV 1/2/O. The test results were also negative. Over the next couple months a lot of my symptoms would resolve. One thing that stuck was night sweats which I would have occasionally. Also, the ringing in my ears and blurred vision seemed to persist.
Fast forward to December of 2009. My night sweats intermittently continued. Concerned that I had been exposed to a non-major type of HIV, I went to see an infectious disease specialist Dr. Daliah Salahuddin in Owings Mills, Md. I told her my concern of the woman's origin for whom I had been with. She gave me a physical and also sent me for blood work. The blood work was done at Quest Diagnostics which they did an HIV 1/2 EIA AB Screen which was non-reactive as well as an HIV-1 RNA,QN,RTPCR which showed no virus detected. A CD4 count was also done which was 720. I was told that all blood work was conclusive HIV negative, and that all HIV sub-types and variants would have been detected.
As time went on symptoms would come and go. Now I was experiencing shortness of breath. Night sweats still intermittently. Days of profound fatigue. On again, off again vision blurriness. Also, I gained an extreme amount of unexplained weight. Major fat build up in my stomach and chest. I went from a fit 190 lbs to at one point 257 lbs in a short period of time. Once again this is unexplained weight gain and fat build up. This is also accompanied with a constant bloated feeling. I'm able to eat about half as much as I used to because I become full/bloated. I also started having problems with numbness in my hands. I would wake up 50% of the mornings with both hands extremely numb. It would take a minute or two before that would go away. I constantly had loose bowels, this has been that way for a long time. I would have days with my head in a fog. Constant white coating on tongue. My eyes would have this burning sensation during the day, as if I were staring into a light and causing them to water. I would wake up most mornings with my eyes extremely watery. I had also noticed during this time many little red spots/dots on my torso as well as reoccurring white patches on my legs and unusual dryness of skin.
Concerned, I started seeing Psychiatrist Dr Glenn Tresiman of Johns Hopkins University. He is a world renowned HIV/AIDS specialist. I went through all my concerns with him and still see him on an occasional basis. I also went back to Dr. Salahuddin in May 2010 to seek help. She agreed to test me over again. The same HIV 1/2 tests that she had done before once again came back HIV negative. Another CD4 test was done as well which was 780.
In May 2010 I started sweating during the day for no reason. I could be in a cool room concentrating on work and would all the sudden start profusely sweating, enough to soak my clothes. This happened about 5 or 6 times. I also started having bouts of sores on my penis. These sores would resemble a sore pimple or small rug burn and would last a week or two then would resolve on their own. To date I have had 4 instances of sores on the penis. I had never had a sore on my penis before this year. Many of my symptoms were getting worse so I once again referred to Dr. Salahuddin in July of 2010, and she referred me to Dr. Michael Melia from Johns Hopkins University. He is an HIV/AIDS specialist. Dr Melia gave me a physical and asked me what more test I would like. I asked if it was possible for the CDC to test blood samples for rare strains. He inquired and was able to set-up testing of my blood through the CDC. Once again I told Dr. Melia of my concern of this woman being African. He said the tests run would be the standard test and would pick up any strain. After much delay my results came back from the CDC on both an HIV 1/2 tests as well as an HIV 1/2+O test as negative. During the time while I was waiting for the results in August 2010, I had a DVT (Deep Vein Thrombosis) and pulmonary embolisms which required a 7 day stay at Frederick Memorial Hospital in Frederick, Md. The doctors were a little mystified as to how I got the DVT, since I had none of the usual factors that would cause a DVT, as well as why they had such problems getting my INR levels up to a therapeutic level.
Since the summer all my symptoms have been on again off again. I seem to get some sort of cold on a biweekly basis over the last few months. There have been weeks where I feel fine, then I have symptoms return. Some new ones have cropped up like very dry tongue and throat which has been constant for about 2 months now. I have had two episodes where my tongue swelled underneath one side of the tongue and was very painful. My breathing/coughing has gotten worse as I am constantly having a dry cough and am short of breath. I have also had difficulty swallowing on about 6 occasions where food has gotten caught in my throat and won't go down. The ringing in my ears has become so loud that it keeps me up at night. I have a general feeling of unhealthiness. I just went back to Dr. Salahuddin last week and she ran another CD4 test. I recently had swollen lymph nodes on the under side of my upper arm on both sides, pectoral on both sides and on the side of my torso on both sides. My CD4 level is now at 630. She says that is still in the normal range and there is no more testing that she can do.
Now for my major concern. I believe that I have an non-major or new HIV strain that is transmitted through casual contact. I believe my entire family was infected during the weeks that I came back from NY. My family has had health issues recently. My wife, who has only been sick twice in the 22 years that I have known her has been recently, over the last few months, constantly coughing, having bouts of swollen glands and running fevers. My 5 yr old son sweats profusely at night drenching his pillow and shirt. My 12 yr old and 9 yr old daughters both have had a lot of fat build-up in their abdomen as well as my wife over the last couple years. The kids have a lot of complaints about their stomachs hurting. My girls complain of sore throats and dry tongue and have had many bugs recently. They have complained about headaches quite a bit. All my kids have complained about getting food get caught in their throats. My son has complained that his eyes hurt as well as always having runny bowel movements. My wife and 12 yr old daughter complain about a lot of joint pain. I have been told many times by the specialists I have seen that even if I did have HIV there is no way it could have been transmitted to my children, also that the tests that I have been through would pick-up any HIV virus known to man. I fear this is now not true. My wife is very aware of my concerns as this has been a 2 year struggle.
I NEED SOMEONE TO TAKE ME VERY SERIOUSLY.....PLEASE. The doctors have told me there is no other testing that can be done and that I am HIV negative. They seem to think that I won't be happy until someone tells me I have HIV. I DON'T WANT HIV obviously, but fear that I do have it. I have read that there are sub-types that these test are not geared to test for. Rare variants of sub type M, like J or K, or other sub-types in N, or are these tests that say test for sub-type O testing for all sub-type O variants? Perhaps even a new form of HIV? I simply can not go from an extremely healthy person to having all these symptoms over the last couple years for no reason. Given the fact that my sexual encounter was with someone who most likely African, there is a good chance I was exposed to something rare. I am willing to take time off work if need be to travel wherever need be to have whatever evaluation needs done. A doctor told me 2 years ago when I first started having concerns that when someone has HIV, they would know it by how they feel. Well, I can tell by how I feel now with my health in decline, that my concern about having HIV is going from concern to knowing. My life has turned into a living nightmare. Can you please help me and my family? Where can I go to get these tests for rare hiv done? I have recently read onto your web-site and respect your opinons. Tell me the truth. Are the rarer forms of HIV really tested on the tests I have taken? I would not be writing you out of concern. I am writing you out of feeling lousy 24/7 and knowing that the person I was with is most likely African. Can I go somewhere to have the rarer HIV forms specifically tested?
If you can answer me off-line to my email that would be great since I have mentioned names in this email.
I read your story (as well as a less detailed version you sent me previously).
I absolutely agree with the very consistent advice you've been given by multiple physicians: you are HIV negative. I'm not denying your symptoms; I'm merely advising that HIV is not the cause. No way. No how. No additional HIV testing is warranted. You've had way too much already. You do not have a "non-major or new HIV staring that is transmitted through casual contact."
I would strongly advise you follow up with a good general internist for evaluation of any persistent ailments. (Similarly your wife should follow up with her doctor and your kids with their pediatrician.) I would also strongly encourage you to work closely with Dr. Triesman at Johns Hopkins. I know him quite well, as we have lectured together on a number of occasions over the years. He's an excellent psychiatrist (please send him my best regards) and should be able to help you confront and hopefully conquer your irrational fears of being HIV infected. Stop testing and stop getting CD4 counts. There is absolutely no clinical justification for obtaining further studies related to HIV. You have overwhelming and irrefutable evidence that you are not HIV infected.