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Author Topic: New member  (Read 4195 times)

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Offline HerNewlife

  • Member
  • Posts: 4
New member
« on: March 22, 2019, 09:50:07 pm »
Hi! So my world came crashing down on March 5, 2019 hearing that I was positive. So back story, I started to get really sick around the 18th of February. I had headaches, body aches, vomiting, and diarrhea. By the 22nd of February I had went to the ER severely dehydrated and I was admitted. They did blood work and a CT scan and an MRI (for my headache the pressure was behind the eye). My blood work came back that I had pancytopenia (low red and white blood cells and low platelets).  So all the doctors were panicked trying to figure out why. They said it might have been Parvovirus b19, or Iíd have to get a bone marrow biopsy, they also asked if they could do an HIV test. I said yes thinking nothing of it because I had just tested negative in November. Once I was rehydrated they released me after 3 days. I was still sick, I had swollen lymph nodes in the back of my head, and down my neck they were big and hurt. On March 5th I received the diagnosis. I couldnít believe it I want to die right then.

March 7th, I met with my ID doctor.  Still very sick, she said that my sickness was seroconversion sickness and one of the worst that she had seen on her case load. Oh I also had lost 25 pounds during this time. So we had the consult and they took labs for initial numbers. She didnít start me on treatment because I had to be weaned off my mental health meds because of the drug interactions.

Fast forward to today, Iím still not feeling great but definitely better than before, physically not mentally or emotionally. Iíve lost 35 pounds during this time of sickness. My Doctor called me with my labs, no other diseases or infection (yay). My viral load is 1.7mil and my CD4 is 272 13% ( not sure what the percentage means I forgot to ask).

My meds had to be ordered since the VA (Iím a Veteran) didnít have them on hand. So I wonít start treatment for another 10-14 days. Descovy and Prezcobix is what Iíll be taking. All in all this has been a loooonnnnggg hard month. I hope this is a good introduction sorry for the length just wanted to cover everything.

Offline pompui

  • Member
  • Posts: 12
Re: New member
« Reply #1 on: March 23, 2019, 03:35:06 am »
Hi there and welcome!
Good that you found this forum cause most of your questions will be answered here and you will find a lot of support in here.
Well beeing diagnosed mean a lot to diegest I just can tell you that everything will get better soon! Take your medicine as your doc will tell you and even if your VL is quite high it will go down quickly. The CD4 is not so bad so this is a good prognosis to get better soon.
Put your head up as hard as it may be at the beginning but from my own experience i can tell you that you will learn to live with a cronical illness and feel better soon. You will live a live that is more or less the same than before.

all the best for you!

Offline TexasDragon

  • Member
  • Posts: 97
Re: New member
« Reply #2 on: March 23, 2019, 08:03:21 am »
HerNewLife -

While Iím sorry you find yourself here, you are in the right place...and among friends that understand.

We have all been where you are now - for me it was just a few months ago, Nov. 2018 when I got the news.

So since then, Iíve had three doctors appointments each lasting maybe an 30 minutes or so, mostly talking and three blood draws. Thatís about it really.

Started on meds (Biktarvy) in December. Zero side effects. The meds work fast and start working the day you take them. You can expect a 90% reduction in the first week (1 log) and another log within the first month. I went from 316,000 to 98 in one month.

So thatís where I am now - and so many others. We take one pill a day and do what we can do to stay healthy, no different than anyone else. Eat healthy, excercise, donít smoke. Live. Love. And laugh (I know that doesnít seem possible now.)

You will be ok...ok?

Know we care, and we understand!
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20

Offline TexasDragon

  • Member
  • Posts: 97
Re: New member
« Reply #3 on: March 23, 2019, 08:17:40 am »
HerNewLife -

And for meds, be patient there as well. When your dr hands you the Rx - or sends it to the pharmacy, you can expect some time for your insurance company (in your case the VA) to review and approve. Obviously a big difference in a $15 Rx for a Z Pack and a $3,000 30 day supply of HIV meds.

I was not prepared for that reality and think few are. With managed care and select pharmacy management it takes time. I expected to walk out with the Rx, go to CVS and have it filled. Nope!
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,635
Re: New member
« Reply #4 on: March 23, 2019, 11:24:58 am »
Hi. So sorry to hear about your health issues and diagnosis, but you have come to the right place as there is a tremendous amount of knowledge on these forums and people who you can freely vent to when the need arises.

I found the first year was the hardest, with the clinic visits, tests, meds starting and so on. After that, I kinda found a groove with it all and with six-monthly clinics visits (like the dentist!), my diagnosis really is a minor aspect of my day-to-day live and all the stuff that was most important to me pre-diagnosis, is still most important now.

We are lucky that we live in an age with such great meds and such a great outlook.

So hang in there and keep us posted with progress, and don't forget to ask a question if you need to, as someone here will probably be able to help :)
HIV - Basics
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You can read more about HIV prevention here:
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You can read more about PEP and PrEP here:
PEP and PrEP

Offline Expat1

  • Member
  • Posts: 302
Re: New member
« Reply #5 on: March 23, 2019, 06:13:05 pm »
Hi.  Sorry to hear about your Diagnosis.  I too was diagnosed shortly after I seroconverted.   (I was getting hiv tested with other blood work every 3 months). 

My accute illness was during Dengue outbreak and I attributed it to that.  Headache--severe, muscle aches (Dengue is necknamed Break Bone fever so also attributed it to that), high fever.

First VL was 43000 and CD4 was still high at 1200.   

I started on Atripla, after 17 days my VL was down to 163. 

The headache subsided.  The other symtoms had already ended.

Now 5 years 2 months later, I have had only 2 colds.  No infections.  Minor side effects from medications (one of which I changed out).

I continue lab test every 3 months for another condition, and get VL tests each 4-6 months. 

My CD4 never below 1000 so I was really lucky to catch it in the initial phase.  Yours is lower probably because of the higher VL.

So message to you is... once on treatment you'll be fine.  Take the meds, see your doctor, do the labs.  Also once undetectable for a few months you cannot infect others, so theres that also.

Offline HerNewlife

  • Member
  • Posts: 4
Re: New member
« Reply #6 on: April 02, 2019, 12:23:04 pm »
Hey all. Thanks for the information and encouraging words. My meds came in and today was my first day taking them (descovy and prezcobix) so far all is well. I started seeing a psychologist just to work through things but overall day to day I mentally feel fine and Iím physically getting better.

The only worry I have is more of a future concern which is that I may end up alone. Dating just seems so much scarier now.

Offline TexasDragon

  • Member
  • Posts: 97
Re: New member
« Reply #7 on: April 02, 2019, 06:17:22 pm »
HerNewLife -

Glad to hear you are on meds and feeling physically better. The emotional part can take some time.

Practice not perfection. Be gentle with yourself.

As far as dating - I have those same fears. I suppose I need to learn to be my own best friend.
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20

Offline MarkintheDark

  • Member
  • Posts: 142
Re: New member
« Reply #8 on: April 03, 2019, 08:26:04 am »
Welcome @HerNewlife.  I'm sorry about the dx.  We've all been there.  So, vent away as needed.

I was particularly struck at how you've already managed.  At one time or another, a lot of us - both newly-infected and long term survivors - have walked a mile in your shoes.  If you haven't congratulated yourself, please do.  Being sick, losing a lot of weight, and a scary dx is more than many can handle.  And look at what you did.  Despite all that, you fought to do what you had to do.  To me, as an old fart, that's speaks particularly well on how you'll manage going forward.

Excellent move, too, on the therapy.  Again, do what you have to do.  As with your doc, you should be completely comfortable with your therapist.

You may yet have a lot of questions as things proceed.  You've just tapped into a community of highly experienced peers who can explain about anything.  We're here for you.
« Last Edit: April 03, 2019, 08:56:08 am by MarkintheDark »
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline HerNewlife

  • Member
  • Posts: 4
Re: New member
« Reply #9 on: May 12, 2019, 03:52:38 pm »
Just an update I had my numbers checked on 4/30 the results just came back. VL went from 1.7 million to 4000 and CD4 went from 272 (13%) to 412 (25%). YAY!!! This is awesome for only 4 weeks on meds. My next appointment is in the end of this month.
I still have some fatigue but overall I feel like myself again.

Offline TexasDragon

  • Member
  • Posts: 97
Re: New member
« Reply #10 on: May 12, 2019, 04:11:29 pm »
Yahoo!
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20

Offline MrAlwaysAnxious

  • Member
  • Posts: 11
  • I survived, and the world deserves to know that.
Re: New member
« Reply #11 on: May 14, 2019, 12:54:20 pm »
I am very sorry to hear of your diagnosis; I know that it isn't easy. I hope you are getting the support you need during this time. It is good to hear that you are doing a lot better now.

I, much like you, experienced a very similar seroconversion experience. I had thrombocytopenia and leukopenia -- low white blood cells and very low platelet count. HIV was attacking my bone marrow just as it did yours, and I was sick for about three weeks and lost 25lb. My VL upon diagnosis was 9 million, and CD4 was 349 (33%), although I still tested negative for HIV antibodies. After about 3.5 weeks on Symtuza, my VL went down to 484 and my CD4 was nearly 800.

It does get better, and it looks like it has -- and I definitely feel a lot better myself.
Dx: 3/15/19
CD4: 349/33% on 3/20/19
VL: 9,820,000 on 3/20/19
Rx: Started Symtuza on 3/15/19
CD4: 771/39% on 4/16/19
VL: 484 on 4/16/19

Offline HerNewlife

  • Member
  • Posts: 4
Re: New member
« Reply #12 on: October 04, 2019, 01:22:00 pm »
Hey just a quick update. Iím now undetectable 6 months post diagnosis. My CD4 is 697 and 35%. Iím adjusting to my new life and moving forward

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 13,943
  • Twitter @JimAllenDublin
    • HIV Lessons
Re: New member
« Reply #13 on: October 05, 2019, 08:12:08 am »
Glad to hear things are going well
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

 


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