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Author Topic: Newly diagnosed and want to know what to expect  (Read 3831 times)

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Offline Lawson

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Newly diagnosed and want to know what to expect
« on: October 09, 2007, 01:44:04 AM »
Hi friends,

Just diagnosed two weeks ago and have questions but before I do, here's my short story. As ironic as it sounds I was so fortunate to have Acute HIV Syndrome, which was complete hell for 3 weeks, but caught it in the early stages. My doctor originally couldn't figure out what I had even all the bloodwork (including an HIV antibody test which came back negative). After researching my symptoms online I came to the conclusion that it was one of two things, Lyme's or ...........!  After testing negative for Lyme's my heart sunk and really without a doubt in my mind I knew. Immediately, I made an appointment that day to take an anonymous Rapid test. When the time came 30 minutes later to get my results panic mode kicked in, I suddenly wanted to turn, walk out the door and pretend like everything was OK and tell myself it was just the flu. I took a couple of deep breathes and after calming down, I realized that the unwanted information in that little room was my responsibility to myself and to everyone else. So now, here I am.

I realize everybody has different reactions to this virus and the meds based on body chemistry but what reactions or side effects can I expect? Are there general physical manifestations that appear with HIV? Will a rash appear every other month? Dry skin? Should I expect certain lesions? I've lost 10 lbs, will I continue to lose? Do most people get sick on meds and for how long? Is there a general time frame before the virus becomes resistant to meds before you have to switch again?

I want to be prepared for what to expect. I am scared just like everyone else, but I'm trying to put one foot forward at a time and take it day by day. This is now my new beginning.



Offline Matty the Damned

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Re: Newly diagnosed and want to know what to expect
« Reply #1 on: October 09, 2007, 02:24:09 AM »
Hi Lawson!

I'm sorry you had to join us but, nevertheless, I'm glad you found your way here all the same.

You say:

I realize everybody has different reactions to this virus and the meds based on body chemistry but what reactions or side effects can I expect? Are there general physical manifestations that appear with HIV? Will a rash appear every other month? Dry skin? Should I expect certain lesions? I've lost 10 lbs, will I continue to lose? Do most people get sick on meds and for how long? Is there a general time frame before the virus becomes resistant to meds before you have to switch again?

I want to be prepared for what to expect. I am scared just like everyone else, but I'm trying to put one foot forward at a time and take it day by day. This is now my new beginning.


Babe, the first thing you need to do is relax. The second thing is to take the time to read our Lessons Section which contains much useful information for the newly diagnosed.

Best regards,

MtD

Offline komnaes

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Re: Newly diagnosed and want to know what to expect
« Reply #2 on: October 09, 2007, 03:06:03 AM »
Hi Lawson

From one newbie to another (got my confirmation more than a month ago), sorry that you had to join us but nonetheless it's great that you found this forum.

Just one thing though, you mentioned that you got your positive result through a Rapid test two weeks ago. Did you follow it up with a Western Blot (WB) test? You can read about it in:

http://www.aidsmeds.com/articles/HIVtests_4713.shtml

As for how to get through the first few weeks, from my own experiences, I think instead of getting stressed out by what might happen, there are practical things that need immediately attention and will help you through the first couple of weeks:

1. Depending on which country you're in, find out all about where you can get treatments and evaluate financial implications of each option (it may not be a problem for some, like me, in a country where we have universal medical coverage); then immediately arrange to pick and see your primarily HIV doctor(s).

2. Find out everything about local supports you can find and contact those that you think are appreciate for the types of services you will need (emotional supports, local peer support groups, counseling or even help with getting medical treatments if you have difficulties financially, etc)

3. While it's difficult for some but easier for others, informed selected friends/relatives that you can trust and seek supports from them; there's no need to immediately tell everyone but you'd find that having a loving partner, some caring friends and relatives to talk to can really help you to stay focused and not get overwhelmed by all sort of emotions and mood swings

4. I do believe that it's possible to read too much about HIV/AIDS at this early stage. Don't think too much about treatment options or their possible side effects, because, first, you will find them stressful and, second, they may not apply to your case. The lessons here are extremely good and I think at our early stage contain enough information for us to ask questions in our appointments with doctors.

Therefore IMHO your questions about dry skin et al are not of your (and mind) immediately concerns (well unless of course you're already experiencing symptoms like lesions, etc); thinking too much about them will only stress you out.

To quote you, "one foot at a time"! Best of luck.

Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline megasept

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  • Posts: 478
  • Steven here...
Re: Newly diagnosed and want to know what to expect
« Reply #3 on: October 11, 2007, 01:40:29 AM »
Hello and WELCOME! The advice to     r - e - l - a - x     it absolutely right. All these negative occurances won't hit you now, soon, or even later.

 
Not "knowing what to expect" is a source of joy as much as frustration. What if all of life were hopelessly predictable? You've just been whacked with a "You are not in control of your destiny" reminder. As the pain wears off realize you never were in complete control anyway.

 8)  -megasept






Offline sacinsc

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Re: Newly diagnosed and want to know what to expect
« Reply #4 on: October 14, 2007, 12:20:38 AM »
I tested poz in August, found out Sept 4...the day now etched into my memory. I knew I wanted as much info as possible like you, and found my way here...which has been amazing, theve helped me mentally and now even physically with supplements. Next I immediately went and got my first set of labs done including a genotype. There numbers are really important and I am getting them done now every 6 weeks until my ID Doc establishes a baseline for me. My first labs sucked, but I was told they would be bad because in the beginning (I was infected May 30) the virus gets the upper hand. My numbers were CD4 402 and VL 118000. Now I havent felt any different, I havent gotten sick, and after a period of depression and mourning I am beginning to get my life back on track again. I go a week from Monday to get my second labs done, and honestly, I am a little excited. My doc has already told me I would be getting on meds any time soon which is good. And hopefully my little fighting white cells have started kicking some ass on this damn virus :) I am thinking positively. I did start taking some supplements, and odd assortment. As Milker for that info, he seems to have that all together. And can link you to threads and websites that I cant seem to figure out how to do.

Helps to talk on here for sure. Also I go see a psychologist weekly right now, to talk things through and a shrink to give me meds for bipolar.

The bottom line is....you wont see any differences in your life. And meds may not even be needed for a long time :) thats what I am hoping for at least. If I do need them, then I will start doing research on them. (Again Milker's advice)

I am starting to think of it as a new little club I have. The sexually hang ups I now have are my biggest problem, and well feeling like Ill be alone for the rest of my life. But honestly...I felt that way before I tested poz. :) Maybe this will change things for the better!


I welcome you here, I wish you werent, but I am glad you did make it. Things get better, I just had the one month anniversary, I still catch myself starting into space going through scenarios, but for the most part I am fine. And I know YOU WILL BE TOO!

Matt
March 07 - Negative
May 07 - Exposed
June 07 - Seroconversion
September 07 - CD4 402 VL 118000 25%
October 07 -     CD4 294 VL 124000 22%
November 07 - Norvir, Triuvada and Reyataz
December 07 -  CD4 355 VL  550 .... guess the meds are working.
January 08 - CD4 446 VL <48 undetectable!
April 08 - CD4 554 VL <48 undetectable!
July 08 - CD4 666 VL <48 undetectable! Hporay...I have devil CD4's

Offline mcmaclean01

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  • Posts: 12
Re: Newly diagnosed and want to know what to expect
« Reply #5 on: October 16, 2007, 12:18:16 AM »
Dear Lawson,
Regarding you newly diagnosed HIV/AIDS status here is what need to know and what to expect. Initially there is no need to panic, but it's something we all do, it's a faze of fear.  Once you adhere to your medications you are not going to die or get sick, well maybe a little sick at first with the new medications.  The important factor is knowing your Virus status and your Immune status.  Your Virus status is called your VL (Viral Load) your immune status is called your CD4 or T Cells.

Viral loads (your virus vary in strength) run numerically from Undetectable (VERY GOOD) to 800,000 or above, I'm not quite sure of the exact figure.  A Normal uninfected person has an undetectable or nonexistent viral load along with CD4/T Cells from normality of 400 to 1200 per person.  Bear in mind that everyone's immunity is different. IE Normality for an HIV negative man could be 480, and more or less stabilized at that amount, yet for a young negative lady her CD4/T cells could be normally 1175,

AIDS itself is defined when your CD4/T Cells are detected below 200, above that figure you now have HIV once tested positive.  Your strive is to attain your viral load as low as it can get hopefully undetectable and elevating your CD4/T Cells above 400.

Okay here come the burdens.  I know this is very difficult as it was for me, but figure out if you feel comfortable letting your parents know as they themselves can be very supportive and this itself, helps you heal physically and emotionally.  Which is probably the hardest part: disclosure to your family, whether done or not your life must and will go on.

At first you will get indications of feeling tired, mouth fungus infections and weight loss.  All of which you already have in your system but in non-HIV people your immune system suppresses them.  It is very important to find an HIV doctor as soon as possible.  I know you want to run away from it but they'll will make things much worse for you as it did for me.

Let him/her put you on anti viral medications as soon as possible and do follow the medication regime strictly.  If you have no insurance go to the Medicaid/Medicare office in your area and sit and interview with them.  Before this is done acquired an MQ11 diagnostic document from your doctor, you take this with you with you to Medicaid / Medicare / CUCS and social security.  This should be done if you have no insurance therefore they will pay for your medications, doctor visits, and Hospital stay. 

Yes it's a little work but in the long run it will make you as healthy as a horse.  The first couple months can be a bit volitile but please don't feel bad or embarrassed about this as your body must get used to the new medications they put you on.  This is undepreictable as it may or may not happen:  at first the meds make you a little disoriented, sometimes you will throw up and expect terrible diarrhea.  Inform your doctor of all the side effects he can help you there and within at least a year you body will become quite accustomed to the meds and you will more or less stabalize during this period. 

So don't be afraid, yes it's a chore but you will feel totally normal and back to where you were before.  View it like a cancer tumor that has been removed and you are on chemotherapy as back up to prevent reoccurence, you feel a bit weird at the start and then soon back to normal.  Look at it as a challenge:  Your goal = YOU have the HIV!  The HIV does not have you!  Buckle up guy, the cow is about to be let out of the chamber with you on it's back. 
Keep well don't disperse.
Mark   
« Last Edit: October 16, 2007, 07:08:38 PM by mcmaclean01 »

Offline Matty the Damned

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Re: Newly diagnosed and want to know what to expect
« Reply #6 on: October 16, 2007, 12:24:16 AM »
Hey Mark,

Welcome to the Forums. Maybe you'd like to start your own thread and tell us a bit about yourself.

Oh - you might wanna take your phone number out of the thread. These forums are readable by everyone on Teh Intahwebs.

Kind regards,

MtD

Offline mplsdoubled

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  • Posts: 52
Re: Newly diagnosed and want to know what to expect
« Reply #7 on: October 16, 2007, 08:11:34 AM »
Hi Lawson,

This is my first post here.  I've been reading for several weeks after testing positive on Sept. 4. 

As so many have already said, each person has a different reaction to the virus and the meds and a different response to the news that he/she has tested positive.

I'm convinced that my mental attitude will be what drives this journey for me.  While hearing the news was devastating, I quickly made the decision to not be a victim.  I went to see my doctor right away, began doing as much research as my brain could handle and shared the news with my closest family and friends.

I've had good days and bad days.  Occasionally it hits me hard ("OH MY GOD I'M HIV POSITIVE!!") but I don't let myself twirl in that for too long.  My biggest concerns now are not about my medical condition but about my social/dating/sex life. 

My first set of labs came back:  cd4=347 (33%), VL=115,000.  It's not great news but it's not horrible either.  I had another set of labs done last Wednesday and will get those results next week.  I will undoubtedly get a third set before deciding on any meds.

I'm not a religious person by any means but I do believe in a power greater than myself whom I choose to call God.  I've had MANY up's and down's in my life and only one of which is testing positive.  I was advised by a very wise and loving man recently that "God did not bring you this far just to drop you on your ass now."  Those words provide comfort for me and hope they help you and others as well.

We go forward on this journey.  It changes the way I thought my life would be but that doesn't mean my life isn't going to be as good, or even better, than I had originally thought. 

Keep the faith, stay positive and live to be an example that this diagnosis does not have to paralyze us but rather can be a driving force for strength and prosperity in our lives!



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Offline Lawson

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Re: Newly diagnosed and want to know what to expect
« Reply #8 on: October 18, 2007, 12:06:24 AM »
Thank you all for your kind words and advice. I have yet to see a doctor or get my blood counts since I don't have insurance which I'm working on getting. (tested anonymously) It's probably going to be a couple more months before all this happens but I'm currently taking herbal supplements, Uno de Gato, and a couple of other things I was given. I've also been looking into Rife Therapy (electromagnetic therapy) Has anyone tried this before? Also, is vigorous exercise OK since I'm not on meds? I'm also bothered by the fact that I got a small cut on my hand about a week ago and it just doesn't seem to be healing as fast as it did before my diagnosis.

Offline LACboi

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Re: Newly diagnosed and want to know what to expect
« Reply #9 on: October 18, 2007, 03:11:21 AM »
Hi Lawson,

Sorry for you diagnosis, but at least you found us here.

The first thing you need to do is find a good HIV Specialist in you area. You need to have baseline labs drawn first to see where you are. Then you need to work with your doctor, don't let him just  try to run the show alone.

Well take care

 


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