Very important - please post.
Nov 6, 2006
I wanted to let you know that I've been tested after 8 months of hell, and I tested negative to hiv. I was the female who kept writing in numerous times with very "real" symptoms. I wanted to post my symptoms again, and mention a few things, as I feel it's very important to everyone reading this that I do so. I spent 8 months thinking I was hiv from having a relationship with a man who I found out later used needles. The symptoms happened all around the time that I started seeing him...and when reading over them again, I don't blame myself for being terrified. I don't want to get on here and preach to everyone that you "must get tested" and you're a "fool" not to, because it's sooooo much easier said, than done. We all handle things differently, and have our reasons for doing so. My reasons for prolonging the testing was that I didn't know of anyone that was hiv, and had never known much about it. I also had a career that was about to take off, and for me...it felt like I had finally got my life in order...and then I was to be diagnosed hiv for a silly mistake. All I knew about it was the old "grim reaper" ad on tv....so you can understand my fear. Everyone...give yourselves a break...the fear is very real for many personal reasons. At the end of the day though, it would be much better to know and deal with it, than to live with the excruciating anxiety that i did. I lost contact with a huge network of friends and family because whenever I spoke to them i would feel like I was going to burst into tears, and then i would have to tell them what was wrong, and that was something I couldn't do. So instead I wasted 8 months of my life, career and happiness, sitting in front of the computer screen reading posts from the body, medhelp and anything else I could search for. I guess it was just for a bit if hope...or maybe someone with exact symptoms that tested negative in the end. I wasn't going to get tested until January, as I had a big overseas contract for my career around NYE for 6 days, and I wanted to be able to have that opportunity and spend Christmas with my family and friends before accepting this new life I was going to have to lead. I also have suffered from clinical depression since I was 15, and after many years of fighting that (and beating that) and getting my life together, I was feeling I would not be able to cope with a hiv diagnosis. Through this experience though, I found much support and made two very good friends in particular who have lived with hiv for many years. One supported me in taking baby steps with testing. I at first wanted to have general tests to know if I was ok and not getting sick before heading overseas for the last time. So I had a full std screening (minus hiv) which came back fine. Although I did find out I have herpes II antibodies. Although I haven't had any break outs since the one on my thigh, it could explain some of my other symptoms. I then had Hep B, Hep C tests and everything else after that. My friend with hiv told me that if I count go thru with the test before January at least have a CD4 and T-cell count done. Just to make sure I was healthy enough to go overseas. I did that I had it done and the doctor said, "I am a hiv specialist and GP, and from these numbers, the ratio's, I can almost guarantee you 99% that you do not have hiv". We sat there for a while and I decided to just do it. I tested there and then. The next 2 days wait were awful, but he rang me early with the news. I broke down crying at work for a good half an hour.....had to leave for the day. So much was built up for such a long time, and I "swore" I had contracted the virus...and many people had said it didn't look good. So, because of her, I have now been tested & diagnosed hiv negative. I can get on with my life without having the huge black cloud of worry hanging over my shoulders and can enjoy the great opportunities coming to me around the New year. I take this experience as a blessing, I've never appreciated or prioritized as much in my life as I do now. My life and "me" will never be the same again.
From this also, I've met some amazing friends with hiv who I will continue to keep in touch with for the rest of my life. There is a strength about these people, I've never known, and I always used to think i was a strong person. I don't come close. I am so educated about the virus now, the medications, research etc, that I will continue to keep updated on it all, and make donations whenever possible into the research of HIV/AIDS. I will educate others about this and never forget this whole experience. Because of the education I gave myself and that I got from others, I'm fairly sure I would have learned to live with hiv and have a near normal life after the initial shock. As my friends tell me.....if you let it beat you, it will. It's all about the power of the mind. The chances you end up dying of something unrelated to hiv are probable. It seems wrong that we are at risk of transmitting this disease just cos we love to love!!!! Sex is a wonderful thing, but we've got to get real here, and be aware of how easy this can be transmitted. Again, so much easier for me to say now....but it just ain't worth not wearing protection with someone you don't know. You can "never" tell who has it and who doesn't. We think we cant be touched by this, as no one we know has it, and it's not in our world as we know it - but I am living proof that isn't the case. Is it such a big thing to ask someone to be tested before deciding not to wear protection? At the end of the day, if that other person cares about you enough, they will still stick around through that. if not, they certainly weren't worth it anyway yeah? It is such an easy choice to protect yourself, but such a difficult period to go through with a hiv scare. I know which one I'll be choosing in future. There are so many things in life that can just "unfairly" happen to us all, so why add more risk of that with something you have complete control over?
Regarding Dr Bob...as I was told time and time again, he is not there to make people with high risk encounters feel better. if you are at high risk, as I was...no amount of internet searching will help you. Every persons symptoms will be different. Unfortunately, if you put yourself at risk.......then expect you at some point need to be tested. For those of you diagnosed hiv positive, and choosing to live your life the best you can - you have my utmost admiration and respect. From the research I've read about in 5 - 10 years time things will just be getting better and better. And I also have faith in a cure, and know I will be contributing financially to the research of that. For those who got a scare and came out negative....I hope this makes us all smarter, and gives us a new appreciation of life.
To everyone, education is everything. I never knew anyone before with hiv, I have now spent time, hugged and kissed more than one new friend with hiv - which honestly, would have terrified me before. I no longer fear hiv. And these people who live with hiv have a bigger strength in themselves than a lot of us could ever find. That should be admired and embraced and we should learn from that. At the end of the day, someone with hiv is no different to any of us...really it was a just a case of very bad luck - it's just this bloody stupid stigma.
Dr Bob, thankyou for your endless "pointless" responses you gave to me. Thankyou for offering such a big part of your life to helping people cope with this. The Body, was the best support network and information resource that I found. I know you'll survive this and be around for many many years to come. Your spirit and humour will make sure of that.
I wanted to add below my symptoms....just to show you all that "symptoms don't mean anything". And to diagnose over the internet is really a waste of time, because if it was correct, I should be hiv positive.
* May 2005 - Met new partner (this is who I was concerned about). Started with protected sex, then unprotected shortly after. Ridiculous I know.
* July 2005 - Felt very nauseas one day. Thought maybe morning sickness it was that bad. no vomiting. Then I came down with a severe flu - nauseas, loss of appetite, vague - confused some days, fever, muscle aches, chills, and an outbreak on the top of my leg/thigh near groin - nothing on genitals. Seemed like a herpes kind of outbreak. Was sick for a good two weeks, the first week being terrible. Have never had a flu like this before. Still had the same tenderness under armpits as before I met this man, no prominent large swollen glands though. No sore throat, no cough. This was all over in about a week or so. Not long after I got a bad ear infection also. This went away, came back later, got antibiotics, and never had it since. but it was very painful and persistent.
* August 2005 - The man I was with got shingles. He went to the doctor, got cream and tablets etc, and it was gone within 2 weeks or so. He didn't get a blood test.
* December 2005 - A gland under my arm at Christmas swollen, it was painful and very large. Was the size of a golf ball. It went away within about 7 days - was sore to touch. I was too frightened to see a doctor and thought it would just go away...and it did. This relationship also ended start of December.
* April 2006 - Two smaller swollen glands under the right arm and tender armpits (similar to what I had before meeting this man), and a few in my neck - more particularly on the back of my neck, almost on the back of my head. I also got a rash on both sides of my breast - but think that could be stress rash, as I was then thinking I may have contracted HIV. I also had a swollen gland come up on my neck (occipital chain) that I woke up with one morning, was then gone by the end of the day, but quite large and noticeable. Also started to have noticeable increased floaters.
* July til now (September 2006). Still tender armpits at times, smaller rubbery lumps at times, and another swollen gland come up on my neck cervical chain gland) that I woke up with one morning, was then gone by the end of the day again. Have always had floaters , but since increase I see them everyday, not just when on a white background or looking up to the sky. They have definitely increased.
Since January 2006 I have also noticed increased allergies and sinus - watery eyes a lot in the mornings, and scratchy eyes. . More noticeably then ever before. I have had itchy legs that come and go, and a few canker sores in mouth and nose....but not too often and I have had mouth ulcers previously Also sore joints in fingers and knees...I guess this was caused by stress.
In the end just a had a very bad virus and flu, that I didn't shake for a long time because of the stress later on and not taking care of myself. The only symptoms I have left since being tested is the floaters. Everything else has disappeared. (except sinusitis and allergies because of it being spring here) been to an ophthalmologist, and I have early signs of normal retina detachment, that shouldn't increase - and will maybe get better overt time, but nothing to worry about. Like I said, from thes horrible experience, I now believe I've been blessed in so many ways. I see the world differently and am educated on so many more things, and I have met some amazing people I would have never met if I didnt go through this. I also have a new passion in life wanting to contribute to the research and education of this disease, and I promise to do so from this moment on.
Take care all......and good luck with your own personal journeys whatever the outcome may be. Dr Bob...thankyou again.
Response from Dr. Frascino
Thanks for sharing your story.
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