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Fatigue and AnemiaFatigue and Anemia
           
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Please Dr. I can't get any straight answers!
Oct 10, 2002

Dear Dr. Bob,

Dr Bob Please answer this note I cannot get any straight answers from anybody on this and I cant get any piece of mind. I check every day to find out if you have answered it. I am sorry it is long PLEASE HELP!

I have been reading your forum extensively for the last 3 months, (I think I have read every single post probably twice. I must say that I admire your courage, selflessness and love of life not found in many people whether + or -. I commend you for the service you provide people like me who have been freaking out about this illness.

I know you say the 12 week test is the important one, is 82 days enough? Can I come out of my cave? What the hell could this be is it stress or do I need to keep testing??? The New York State Dept of Health Aids Dept say 3 months will catch virtually !all! cases and further testing is not required unless there are repeated exposures or a clinical history that suggests hiv infection. Is this correct does my clinical history support additional testing???? I am in desperate need of a WOO-HOO right now but cant bring myself to in fear of getting my hopes up. I have 2 small children and am trying to work things out with my wife (marital problems) and every time I am around the kids I feel like I took there father away, and quite possibly there mother I had sex with her before my symptoms and after the doc told me it was one in a million. The guilt has been as you can imagine incapacitating; I have hardly been able to function. Any guidance would be a Godsend!

My date of exposure was July 5th. I had unprotected insertive vaginal sex with a woman that I did not know a one night stand that I met in Greenwich village here in NYC. I was extremely drunk and started with a condom, which came off and stayed off after a few minutes ( The stupidest mistake of my life). We probably were at it for a few hours. Anyway after the incident I freaked out and went to see my doctor within 72 hours to see if I could get PEP. He wouldnt give it to me and said your chances are one in a million, astronomical. So I went home and felt better.

At 3-4 weeks I started developing fatigue it seemed only for an hour or 2 during the day but bordering on exhaustion shortness of breath while working out. At 4 weeks I got a sore throat low-grade fever (99.1 and below came and went it was still hot out at that point though) a lot of sweating, strange internal heat, joint and muscle pain that were pretty steady for 2-3 weeks. The sore throat still comes and goes now 2 months later. Anyway at 6 weeks I developed a rash on my face and neck that 2 doctors described as Rosacea (burning, itching like a sunburn), I am of Irish descent and flush easily and often. I was losing my mind at this point. I was continuing to have a lot of itching all over my body. Then about 6 weeks I started getting sensory problems that started in my ankles. I felt tingling, burning, col patches on the outsides of shins (When wearing shoes fealt like my feet would throb right out of my shoes!) shooting pain into my toes, ankles leg weakness etc. At the same time I also started getting what seemed like extreme arthritis. Now I used to play semi pro-football so I am used to the occasional arthritis in my fingers and knees but this was everywhere especially in my lower limbs, feet and soles (arch, heel). Ankles, knees then went to hips on to wrists elbows etc. The pain was sometimes unbearable in the night and I would wake up in the morning and my feet would crack and be totally stiff first 5 minutes in the morning( sounded like somebody was breaking sticks coming down the hallway). As time went on I was getting increasing shooting pain (electrical) in fingers, twitches in both quads and triceps, forearms all. I also started getting strange bowel symptoms constant gas and problems digesting food, some nausea (3-4 days) constipation, to normal, to occasional diarrhea at night this went on for a week, week and a half. The fatigue came and went. I went to the neurologists and he said it did not look like AIDP or anything AIDs related and this guy is on staff down at St Vincents in Greenwich Village so he sees a lot of it. I still didnt believe anyone. I was dying of this dreadful disease and how was I going to explain it to my wife and 2 small children. The guilt was unbearable. I tested throughout this entire time 5,6,7,8,9,10 and now finally 12 (82 Days) weeks all negative, Tested all sorts of other things the full workup, STDs, thyroid, fifth disease etc etc etc ad nauseaum . To this day I still have the neuropathy type symptoms and the rheumatic symptoms where someone is sawing off my joints but no swelling or inflammation.

And once again Thank You so much for giving up your time to answer questions like mine. Your compassion towards people in need is a lesson to all. You have been one of the only lights that I have had through this crisis. I would love to send a donation to your foundation if you could pass along the info it would be much appreciated I know I saw it in one of the posts but do now want to go through all the posts a third time ;o).

I very much look forward to your new posts. Stay Well and God Bless!

Sincerely,

Freaking Out in NYC

Response from Dr. Frascino

Hello Freaking Out in NYC,

As you probably know, this forum is dedicated to HIV-positive folks struggling with anemia and fatigue problems. You have 7 HIV-negative tests out to nearly 3 months. Your risk was insertive vaginal sex with a woman of unknown serostatus. This does carry some potential risk for HIV, but your multiple HIV tests have conclusively ruled that possibility out. You do not have HIV disease. So what do you have? First of all, you have lots of guilt and anxiety over this issue, which may certainly be contributing to your ongoing symptoms. Your neurological and rheumatic symptoms are impossible for me to evaluate over the Internet, other than to say they are not HIV-related. So, what to do? Continue to see the neurologist and a rheumatologist if you are having ongoing problems. Also, consider seeing a therapist to help you cope with your guilt and anxiety, especially if the neurologist and rheumatologist tell you everything checks out fine. No further HIV testing is needed. You will not regain both your physical and psychological health by searching for a condition you do not have.

Contributions to The Robert James Frascino AIDS Foundation can be made by sending tax-deductible donations to:

The Robert James Frascino AIDS Foundation 779 Altos Oaks Drive, Suite 200 Los Altos, CA 94024

For details about The Foundation's mission and current work, read through the post on this forum entitled "Re: Got Tested (Please Post)"....(posted today). Also, this gentleman had lots of unexplained symptoms and is also HIV-negative, like you! Thanks in advance for your support. I do hope and expect you'll be feeling better very soon.

Dr. Bob


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