May 23, 2004
Dear Dr Bob
Your resume left me very touched, and prompted me to write as there cant be anyone with your extensive expertise with the genorosity to give up your time to help people worldwide. I have spent many weeks combing the archives and cant find a case like mine.
It all started in august 2003 when me and my new girlfreind both went to get rapid HIV tests (i am a 26/m/ american been living in thailand for last 18 months). Hers was negative, but my strip came back with one solid line and a faded line. The doctor at the clinic said i should go to a hospital for more tests. So that night we went to a hospital in bangkok, we showed the doctor my results of the test and he said he didnt believe this test and i should have their abbot labs rapid antibody test, which i did, and it came back negative, i was saved! or so i thought.
A month later i started getting mild fevers and i got a pain in my ear, another month on and i get a blocked up nose and im coughing up this really sticky clear stuff, which i still cough up to this day.
Me and my girlfreind both had 3 more of the abbot labs antibody tests over the next 4 months, all negative. needless to say HIV had taken over my life and i was very worried, in febuary i was looking at HIV symtoms on the internet, i read the list and realised i had every one, except white tounge, phew what a relief i didnt have white tongue, i walked into the bathroom and looked into the mirror stuck my tounge out and to my horror the top of my tounge was covered in white furry texture it was part of my tounge and wouldnt wipe off (is this EBV?). I was in shock, we got married and went to bali for the weekend, i was so ill i thought i was going to die there, i lost 10% of my body wieght over the next 3 days with cold sweats and no sleep for 3 nights, my mind was shot and my wife had to look after me like i was a kid becuase i couldnt even work out 2+2. my lymph nodes swelled up under my arms, and there was a rash on them, all my limbs ached. I was convinced this was seroconversion, and i was going to die soon unless i got treatment,so i stormed (or rather staggered) into another hospital back in bangkok and claimed i was dieing of HIV. I got some antivirals. completed the presription but didnt get any more becuase they made my butt hurt.
Anyway this was march now, i had started suffering oppurtunist infections allready, my ear infection had gradually got worse over the last 3 months,i had tingling hands and feet, gas for last 6 months and now my foreskin was sore and red, this i think is a fungal infection? and wouldnt respond to treatment,(creams or pills) and has gradually got worse to this day, just like my ear infection which has spread to the other ear. At this point i was very eager to get back to america where i could get some proper treatment and diagnosis, but i wasnt sure if i could last the 3 months it was going to take to get my wife an american visa.
I got a PCR test and a white cell count to see if i could last another 3 months, the PCR test was negative, my cd4 was higher than i expected at 616 and my cd8 390. I was surpised by this (both at lower end of range, but wasnt my cd8 suppose to go up after infecton?),(also i am mildy autistic and autistic people are suppose to have lower wbc count?) I decided to go back to the place where i initially tested positive and had the test again, it was negative this time.
Then in late march i got a really bad fever (41 degrees) and my lymph node swelled up in my neck below my infected ear this lasted 2 days, and my feet and hands had no feeling for 2 weeks. I feared i wouldnt last the time till my wife got a visa. So i flew back to USA on my own. I had another antibody test in late april in a USA clinic, to my suprise it was negative, i couldnt see a specialist in USA because i promised my wife i would come back within a week. So i flew back to bangkok still stumped.
my exposures to date: march-may 2003, unprotected sex with thai girl freind, unknown status, claims she in negative. july- november 2003, unprotected sex with thai girlfreind (now my wife) tested by antibody and PCR negative.
I know that my immune system is weak becuase i am getting infections everywhere that are persistent and dont respond to treatment, i have been ill since september, i have given up with all the hospitals in bangkok and need your advice/opinion on my case.
BTW i shall be donating 1000 usd to your foundation, and i wish you the greatest success.
Response from Dr. Frascino
Hello Bangkok Fiasco,
Fiasco indeed! Sorry to hear you have had such a difficult time over the past nine months. Although I cannot definitively diagnose you over the Internet, from what you've written, it appears that your fears of HIV are unfounded and related primarily to your August 2003 "false positive" test result. Why do I believe the initial test was a "false" positive? Because multiple subsequent tests, including 6 antibody tests and a PCR test, were all negative. In addition, your T-cell subsets were normal. This is overwhelming evidence that you are HIV negative. That doesn't mean I don't believe you have symptoms. I certainly do. However, what is very clear to me is that the cause of your symptoms is definitely not HIV.
What should you do? First off, realize that your immune system is not necessarily weak simply because you have several problems that haven't cleared up as quickly as expected. Your main complaint seems to be a chronic or recurrent ear "infection." For that, I would suggest you see an ENT (Ear, Nose, and Throat) specialist. Inflammation in the ear, nose, and throat areas would account for your lymph node swelling in your neck, your productive cough, and possibly your temperature elevation as well. You might also have a sinus or allergy component to your problem. The ENT specialist should be able to help you sort this out.
Many of your other symptoms fatigue, insomnia, cold sweats, difficulty concentrating, altered sensation in your hands and feet, etc. could be related to severe anxiety, a consequence of your fear of being HIV infected. If no physical cause can be identified for these symptoms, you should consider a possible psychological cause. I have seen many cases similar to yours. I have no doubt HIV is not your problem. I also have no doubt you are in need of help to overcome your fears and anxiety as well as whatever physical problems (ear infection, etc.) you are experiencing. Whether in Bangkok or back in the U.S., I hope you will seek out the help you truly need rather than chasing an illness you could not possibly have.
Thank you for your very generous gift. The $1000 will touch many, many lives in a very meaningful way. The compassion you have shown to others by making this gift will be returned to you 1000-fold. Please accept my heartfelt thanks and fondest wishes for peace, health, and happiness, all of which I firmly believe are readily within your reach.
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