new and dont want to be :(

Created 9 years 2 months ago by PittGurl
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I just tested positive

Please bear with me - this is long..... I'm a 43 year old female..2012 was the last HIV test I had which was negative – since then I haven’t had sex with anyone at all. I had been waiting for my husband that left me 3 years ago and hoping for a change in heart…..he's been with many women over the years that we separated.  Well my husband left the other woman and came back to me May 16th after 3 years apart. AND THEN.....He then left again June 24th to go back to the other woman he had been with for over 2 years (and has a 9 month old and another one on the way). We had unprotected sex.

After he left there was another encounter i had with a friend from July 2nd to July 19th unprotected sex. He was 23 and yes 20 years difference but an old soul....anyways..he was from Jamaica and so im wondering was it my husband that slept around or this guy that is from out of the country (but has been here for 4 years or so).  My body is very sensitive and when i haven't had sex for a long time i get UTI's pretty quickly. July 21st i had a very bad one, was put on Cipro. I had also been washing my 3 cars and had a horrible backache and just felt yuck.  The Cipro took away the pain and burning. Yet, I was still feeling like my ovaries were going to burst so I went to the ER. They ran blood tests (no HIV – wasn’t even mentioned) and did a CAT scan that showed everything was normal; gave me some medicine in the ER.  My white cells were down a little but ER sent me home to continue Cipro for UTI.

One day later I was feeling like my skin was sensitive to the touch, my head was hurting, and just feeling yuck. I don’t think I had a fever and have had NO rashes at all.  Went to a different ER, then ran more blood work (no HIV – wasn’t even mentioned) They did a CAT scan with contrast to make sure my kidneys were functioning, intervaginal ultrasound – everything was fine. They did a monospot test and said I had Epstein Barr virus but not mono just the virus that causes it.  Said there is nothing they can do for that – just rest, fluids and time.  That I would be tired and achy for a while.  Same place decided to run STD tests and treated me in the IV for gonorrhea without confirmation – just as a precautionary. Called 2 days later and Chlamydia had tested positive. Dr called in Doxycycline for 10 days. I don’t know if my reaction to that meds is HIV or just the meds, but it gave me very loose bowels, loss of appetite and nausea/tired. They did a spinal tap while there and confirmed viral meningitis.  Again, no medication, rest and fluids and sent me home.

2 days later I followed up with my primary dr from the ER visits. He was sure I was dealing with the Viral Meningitis but I requested additional STD testing and HIV. 

August 3rd - The dr called me in and said my worst fear ever :(  Initial Blood test was positive for HIV, then they resent it out and it was indeterminate...sent it out for the Western Blot and it was confirmed. 

I feel like a pile of bricks was just dropped on me – Im a single mom of 2 kids (17 and 11) and all they did was refer me to infectious disease and my appt was 10 days later!!!!  The next day the Dept of Health called me – and I wasn’t warmed about that either and didn’t know what to say to her.   Meanwhile, I don’t know what is going on!  I feel so alone, so helpless, so sad, my anxiety is through the roof.  Right now, physically – I don’t feel tired, or achy or anything. I have an occasional shooting pain on the left side of my head which hurts more if I put my head straight down. From what I read that is part of the Viral Meningitis.  The internet scares the poop out of me.  I started having an appetite  again the day after I finished the Doxycycline and my bowels started getting back to normal.  

Im looking for hope, friends, someone that is like me - because i feel so alone in this.  I'm so scared. The only #'s that came back from Monday's lab of 25 + tubes (WOW!) was CD4 was 286  - I guess i am being told that is low but because i just was infected in July they expect that and it should rise in the next month or so. I dont see the ID dr until Sept 15th - so no meds until then when they get back the labs for genotype?  I'm so scared.

I have another question....does every sexual encounter with an unprotected HIV positive person create a positive HIV in the negative person?

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20 comments

Submitted by The Well Project • 9 years ago

Thank you for posting. Learning you are living with HIV can be very difficult news to hear. I'm glad you found our site. Getting support and having solid information available to you can help enormously on this journey. You are not alone!

I encourage you to look at these articles on our website:

You may also be interested in our blog, A Girl Like Me, where women of all ages living with HIV can share their stories.

To answer your question, no, not every sexual encounter with an unprotected HIV positive person will create a positive HIV in the negative person. However, any sexual encounter will carry some risk of transmitting the virus. For more information, you can read Safer Sex and HIV Transmission.

I hope our site offers some of the support you're seeking. 

Best,

Juliana Johnson

Web Coordinator

Submitted by Lovinglife101 • 9 years ago

Hello Pittigurl,

I am very sorry to hear your news and a little concerned, as having a T-cell count of 286 might mean that you have been living with HIV longer than you think.  HIV can take up to 10 years before any symptoms appear and on average people lose about 100 T-cells a year if they are not in treatment.  The normal T-cell count of a healthy adult/adolescent ranges from 500 cells/mm to 1,200 cells/mm  Everyone is different so make sure you discuss this with your doctor.

Juliana has given you some great resources and there is a wealth of information on the Well Project website you will find helpful. 

Do not let what you read on the internet scare you.  I have been living with HIV for 30 years.  I contracted it when I was 19 and at one point I was homeless had less than 50 T-cells.  The medications today are very helpful with minimal side effects.  It might take a little while, but with care a treatment, your T-cells and viral load can improve.

You can live a healthy productive life with few issues if you take care of yourself, get the rest and nutrion you need, and adhere to your medication.  Always talk with your doctor as they will be able to give you the best answers for your specific situation.

Getting a case manager/social worker is important in order to navigate the system of care and get you the benefits you need to help you remain healthy.

I wish you the best and we are here for you. 

 

Submitted by PittGurl • 9 years ago

Thank you Lovinglife101 - 30 years! WOW!   Seriously, i felt i was going to die that day and the day after and the day after that and almost continuously feeling like what was that? ouch...what is that?  and oh wow, why am i coughing? etc///...the only thing that stopped me from being overly concerned about the T-cell count is that i was tested in 2012 and it was negative and then again this past January because of life insurance changes i was making - that was negative too.  And i wasn't sexually active at all for the past 3 years so 2 negatives. Im hoping that is a something to bank on?  Im not an expert and just learning everything seems like in a crash course.  Also, the ID nurse says I prob contracted it in June/July so the #s dip quite a bit and then come up - she said just part of the conversion process?  Any thoughts?  Plus at the same time i did have Epstein Batt (virus that causes mono) and Viral Meningitis...both of which are finally leaving me (as much as possible - no headaches and less exhaustion)

Please do give me your thoughts though...right now Im just waiting for the 25 (or seems like 25) blood tests to come back for genotype and TB , etc etc....then ID dr for 1st visit on 9/15.  I feel like a walking virus though :(  

Submitted by Positive31 • 8 years ago

I have being positive since 1998,because I remember I had a horrible fever,stabbing headaches, nausea,no vomiting though,but lost appetite I mean water made me sick..I was treated for malaria that was in Nigeria, never got better,suddenly woke up feeling very strong. Never had hiv text done,until 2000,when I got pretty sick....tuberculosis, my doctor then asked me to go for the text...I knew what I was expecting, but just hearing it alone was distressing. I met good friends at the Hiv clinic in nigeria....bear in mind my Cd4 was 116....full blown aids....but I fought like crazy.....I had a baby 2002,because of me thinking of what people will say I breast fed her she too is positive. Since my initial diagnosis .....all my results have been undetectable ,my viral load as at yesterday was 697....my baby is also undetectable, Cd4 1000....yes she is 13 now. I am looking forward to getting married,having another baby,growing a family and all that life has to give. I have learnt to be positive in everything, I came into the US 2008, I was an RN back home in Nigeria. ..took my board exam 2009,passed it ,life continues. In all this...I have learnt to have the virus and strongly refused the virus to have me. You will do just fine. Roses are beutiful but remember they have thorns in them too. Once you start to look at life like that.....you will do very well

Submitted by katie06 • 9 years ago

I want to assure you that you will be ok! I tested positive 9 years ago through heterosexual sex.  The doctors didn't test me until I was pregnant simply because I wasn't considered "at-risk".  I remember all the feelings you are experiencing now, but it gets better.  I'm able to work full time, be a mom, and volunteer in my community without any issues.  The medications available today allow us to live very "normal" lives.  You will do great! Also, this community of amazing women will help you move forward :) hugs! 

 

 

 

 

Submitted by PittGurl • 9 years ago

katie06 - thank you for replying- you ladies have no idea how much knowing you are out there...i feel alone bc no one i know (unless of course they are not telling anyone) has this. I can't even write it yet :(  

I had a question about volunteering.....you didn't have to disclose it?

Submitted by tj30trust • 9 years ago

First of all PittGurl, I want to say thank you for your very candid and open conversation about the events leading up to your positive diagnosis. I want you to know that we have all experienced that fear. I was diagnosed back in 2012 and was just as afraid as you are right now. My CD4 count was 359 at the first test and it is now almost 900 which fits within the normal range of people living beyond HIV. You are a part of a community that is a wealth of information and resources. We are here for each other. This is not the end, although it may certainly feel that way. Just know that what you are feeling is relevant. People who are living beyond HIV may not be able to offer the best advice, but we have a community of powerful women leading the charge in HIV eradication. You are loved and you are not alone. I want to echo the sentiments of Juliana. There are so many articles and so much information right here on The Well Project website. Your life is not over. You are about to embark on a journey that will be a testimony to other women the world over. I wish you nothing but the best and want to stress the importance of adhering to your regimen once you begin it. 

Submitted by PittGurl • 9 years ago

Thank you tj30trust - i am anxious to get to the dr on 9/15 to find out what they are goign to give me - just wish it was sooner but they are telling me it takes a few weeks to run all the bloodwork.  :(  I am so glad to have found this board and all of you!! thank you from the bottom of my heart!!!

Submitted by boseolotu • 9 years ago

I will love to tell you that you are not alone.
Just today I was in a support group meeting and heard some young ladies share their experiences for been newly diagnosed with HIV.
Some loss their jobs because of this and relationships has been broken because of this but like everyone else have said.
The most important thing is for you to stay healthy and get more up to date information from the blog.
I was a single parent when I diagnosed myself of the HIV and I have no knowledge what so ever about it.
I live in fear for a whole year not knowing what to do.
Today I am proud to say that I have more information and knowledge about the virus.
And I have been living with HIV for almost 20yr now.
I am married with two more great kids who are negative to the virus.
So stay strong and healthy.
Love and hugs
Bose

Submitted by PittGurl • 9 years ago

boseolotu - being a single mom and going through this is very hard - i feel like everything just got ripped out of me - that my light was snuffed out and i'll never love again or be loved.....it's a lonely place to be :(   Im so glad to hear of your happiness though!! it def gives me hope but at the same time, weren't you scared? 

Submitted by MariaHIVMejia • 9 years ago

Hello Sister and welcome to our group :)

I want to welcome you and tell you that you will have a life after HIV ! I have been livng with HIV since I was 16 years old in 1989 ..I am now 42 years old and healthy! I refused medications for the first 10 years and I almost died! we really had nothing back then,,,I dropped to 39 tcells..so my advice to you is very simple! get support..you are in the right place here :) and add me in facebook Maria HIV Mejia-Laing so I can put you in an online support group that has doctors and people from all over the world as well! read our fact sheets and blogs so you can see you are not alone :)

 

I got it from my first boyfriend via heterosexual death...I am not married with my partner for almost 10 years ..she is HIV negative and continues to be negative.

 

you have much hope and you will find much sisterly love here

 

love and light

 

Maria

Submitted by PittGurl • 9 years ago

Mariatmejia - thank you Sister :)  I have only 1 brother as a sibling and not many friends so I value this communication :)  

I'm scared about the Facebook thing because dont people see the groups you join?  Please educate me on this if you can - i would love it but at the same time, my family, friends and kids are on it and Im trying to keep my circle to under 10 :( 

Submitted by PittGurl • 9 years ago

Can anyone tell me how to get emails when responses are posted? Im not seeing how to follow it or do this?  I dont want to miss any responses

Submitted by PittGurl • 9 years ago

THanks Katie06 - im ok - still pretty tired alot of the time. i crashed financially and that has been hell.  Agencies say they will help and churches too but when it comes to actually helping - no one is around. My car is out for repossession and i can't make my rent. stress is out of the roof!  

Submitted by katie06 • 9 years ago

You've got this!  Don't let the diagnosis stop you from working (if you are physically/mentally able).  I found a lot of relief with concentrating on work after my diagnosis.  It gave me a purpose to keep going each day and something to take my mind off the situation. Both my husband and I still work full-time, 9 years after our diagnosis.   I work an average of 45 hours per week.  Of course, if you are having phsyical and mental issues, those are more important to conquer than work!

As for the financial problems, I suggest keep on asking through your case manager (if you have one).  They should be able to help you find the needed resources.  Like they say, 'The squeeky wheel gets the grease.' 

Submitted by PittGurl • 8 years ago

Hi katie06 - thank you....just got my 7 weeks results and I dipped from CD4 570 to 522 but.......I AM UNDETECTABLE!!! :) However, now im having some hairloss going on. I dont know why ....nurse from ID office called Viv Pharm - makers of Triumeq and only 1 other person has reported hairloss. So not sure what is going on :(

Submitted by katie06 • 8 years ago

I'm so glad to hear you are undetectable already! That's wonderful! As for the slight drop in CD4, that could just mean your body was fighting off a cold or something. My numbers fluctuate like that, as well. But my physician assures me it's normal.
I've not experienced hair loss due to meds before. However, I did experience it from extreme weight loss. I took multi-vitamins, increased protein, and used shampoo with biotin (you can find this in any drug store). My hair did come back, but it took several months.