Recently diagnosed

[Jili]

Hi everyone, I just learned 15 days ago that I'm HIV positive. I'm overwhelmed by sad feelings. Where do I even begin?

[pauldecle Partner ForumLink]

HI Jili,

I know that getting your diagnosis will have been a traumatic experience for you but things will soon start to calm down and your life will return to some normality within a few weeks or months.

Firstly, Don't panic. For most people HIV will just be something we will live with, and I do mean live. I was diagnosed nearly 20 years ago and I am healthy, I have a great job, and I plan to live for meany more years and to draw my pention.

It would be helpful to know what country you are in and if your can remember what your viral load and CD4 counts are. Your viral load is lightly to be a big number and your CD4 a low number. Are you on treatment?

I know there are many other people in this community who are also very happy and living full lives with HIV and I am sure some of them will also post supportive messages to you.

If you have any specific questions please post them here and we will collectively do out very best to answer them and to support you over the next few months until you are back on your feet again.

Remember, you are not alone

With the kindest regards,

Paul

[Jili in reply to pauldecle]

Hi uncle Paul

I went to the clinic and they said I must start with treatment straight away because my CD4 is 188. They gave me Odimune, is this the right medication with little side effects?

[Lovems in reply to Jili]

This is hard to say and is best answered by your doc who is looking at your overall health, CD4 count, viral load, etc. Just know that there are many, many drug options today. It's great news.

[Lovems in reply to pauldecle]

Hi Jili,

I, too, had the same feelings when first diagnosed...and to piggyback on the others here, you're not alone, you will most likely live a good long time with this disease; no, there is currently no cure but they are getting closer to one (watch the doctors at Oregon Health Science University, Portland, Oregon, USA - they are some of the world's leaders).

It's a manageable disease now...(my CD4 was 40 with viral load of 88,000 when diagnosed....I had virtually no immune system and a good cold could have killed me - today I'm at CD4 of 544 (42%) and undetectable viral load for years) and there are lots of different drug combos to get you to a healthy place with few side affects. Ask your doc about different combinations if you suffer any side affects. I have not had any side affects except for anemia many years ago and once changed meds, am fine.

In my experience, there are two sides to this disease - physical and mental/emotional. Not sure which is more important or if one can say that....physically, I am more healthy than many other people out there. My doc says I will not die from this but more likely to be hit by a car walking across the street, especially since I can be a bit of an idiot - lol.

Mentally, I was afraid I would never have another relationship again (i'm a straight male) - what woman would subject herself to sex with a guy with HIV?) but that's not true. I've been undetectable for years and have had several good relationships....I disclose EVERY time we get close to sex. I explain about HIV, and normally insist we go to my doc before sex. The bonus with me is I know what I have and what i do not have - many people don't know....I get checked annually now. You can and likely will be in this situation soon as well. It takes a while to get things under control, but it is possible and likely (I say likely as I'm not a doc and each person is different).

Enough for now - GET INFORMATION - not knowing is what causes me the most fear...go to your docs, stay on this forum - we have been through this and will love you through this too.

[Jili]

Can I please have a link to that Juneplove

[Bobshortfor in reply to Jili]

Hi Jili,

Sorry to contradict someone else on here but there is no current cure. There are no herbal remedies that'll magically get rid of it of HIV. Please do not listen to those that say there is as it'll only cause you pain.

There is however excellent medication that is almost as effective as a cure. Like Paul previously said things seem bad now but once you're over the initial shock and the meds have kicked in you'll live a practically normal life. I've lived with it for 10 years and other than meds that I take everyday you wouldn't know. There will be challenges along the way but that's where a community like this helps because I'll guarantee that at least one of us will have gone thru it before and can offer advice and support.

It would help to know which country you're in, viral load and CD4 just so that we can offer you the right support.

When I first got diagnosed I looked on the internet for advice and boy did that scare me. 10 years ago on WWW it was all about death sentence, 1980/90s and conspiracy theory in how HIV/AIDS came about. I thought I'd be dead in 2 years. I didn't want to get out of bed. I was petrified. But none of it was real. The reality was very different and that reality is medication. Discuss with your consultant and make sure you get what's right for you as some people get side effects and if you do get the side effects ask to change your meds.

Life's not over, it's just another hiccup along the way to old age.

We're here for you,

Simon

[Jili in reply to Bobshortfor]

Thank you so much for the support Simon, I will really need your support in this journey.

[Bobshortfor in reply to Jili]

We're here for you. It'll be hard, but it will get better, that I promise. Where are you based? Which country?

But please don't listen to those that say about cures on here, they really don't exist.

[Jili in reply to Bobshortfor]

I'm based in South Africa, today I'm going get my test results for viral load and CD4 count.

[Bobshortfor in reply to Jili]

Great, when you've got them message and let us know, we can't take away the advice given by your consultant but we can give advice on what to ask.

[Jili in reply to Bobshortfor]

What questions can I ask the consultant uncle Bob? Will they decide the medication for me? Which is the best medication that I can choose that has no side effects?

[Bobshortfor in reply to Jili]

This is where knowledge of your viral load and cd4 helps. Do you have any idea how long you've been positive and I don't mean diagnosis? If you've recently contracted HIV you probably won't start medication straight away, they'll look to see if your viral load stabilizes first as it'll be very high to begin with. Although If your CD4 is below 300 you'll probably start meds. Have you any other illnesses? Chest infection, rashes etc? If so mention all to your consultant as these can all be related and once CD4 is under control these generally all go away.

If your CD4 is low it can be a concern as it means you're susceptible to infections but as soon as you start meds this imbalance will change, your CD4 will increase and you'll feel better. Stress is the worst thing for HIV because it effects your CD4 so try to relax(easy to say I know) but it'll help you think clearer and ask the right questions.

If they don't start you on medication ask why, and when they feel will be the right time to start. Don't feel afraid to challenge, it's your health, take control.

[Lovems in reply to Jili]

I agree with Simon...I was very lucky as when I was diagnosed, I lived right outside San Francisco (ground zero in the 80s) and had great advocates and docs who were there in the early days....phenomenal support...you can get good support too and today there are sooooo many good drug options.

I feel blessed in some ways to have this experience as I can share it with people like you who are just starting this journey.

It's not a death sentence...let the meds work, do what the docs say and the universe will conspire to help you!

[LondonFit in reply to Bobshortfor]

Agreed, no cure yet but current medication of 1 tablet a day is as good as the cure if you take it without missing a day and it is near impossible to pass it to anyone else.

[Lovems in reply to LondonFit]

Oh, good comment, LondonFit...DON'T MISS YOUR DOSES...is that strong enough? LOL...now and then is probably ok, but that is what will keep the disease in its box and not out causing you trouble. Keep extra meds in the car, purse, etc. so you have them if away from home.

[Joey9009 in reply to LondonFit]

I agree Londonfit, so long as u take the medication daily & your undetectable! However so long also that no other sti is in the mix, which is referred to as cross infection!

[pauldecle Partner ForumLink in reply to Jili]

Hi Jili,

I have removed JunePLoves postings as she is posting offensive and untrue messages. Let me be very clear, There is NO CURE for HIV.

Although there have been big advances in research in this area they are still a long way off getting a cure at least five years. There are three main reasons why it is so hard to make a cure,

1). HIV is what is known as a Retro Virus this means that it uses our own DNA in order to make new copies of its self.

2). Some of the HIV virus goes to sleep in our lymph glands and the medicine we take to kill the virus dose notwork on the sleeping virus.

If we stop taking the medicine then, when the sleeping virus wakes up there is no medicine in our bodies to kill it, so it starts to grow and grow until they make us very ill and eventually kills us.

3). The HIV virus can mutate and become resistant to the medicine we use to kill it. This is why we now use several drugs at the same time to treat HIV (sometimes all of these different drugs are combined into one pill).

This is also why it is very important that we take all of our pills every day just as the doctor or nurse tells us.

This is the most important thing about treatment for HIV. We must take all our medicine every day at the right time just like the clinic says, do not miss doses and do not share meds with others.

I hope this helps,

Kind Regards,

Paul

PD the i-Base web site is a really good web site, it has lots of info on HIV and starting treatment. The site also has a section where you can ask questions and they will get back to you with the answer.

i-base.info

i-base.info/qa/ask-a-questi...

[Jili in reply to pauldecle]

Thank you very much uncle Paul

[Joey9009 in reply to pauldecle]

Good to know Pauldecle, I am a sexual health advisor with Dance4life going round Schools teaching sexual health & advise & it is imperative to give the right & correct information to those that need it right now! Kind Regards Joey9009

[Bobshortfor]

What are you doing? You are cruel. You giving false hope that does not exist. There is no current cure and you are hurting people that are already going through a hard time. I have reported you on here and hopefully that will get you removed.

[pauldecle Partner ForumLink in reply to Bobshortfor]

Just to say Bob is not calling Jili cruel - He was responding to a post I removed. That post was scamming people and telling them that there was a cure for HIV which is not true.

Paul.

[kentgal]

Hi Jili,

Sending you a massive hug................. you probably are in shock, I know I was when I was diagnosed 4 yrs ago. I thought I was going to die but the reality of living with H.I.V is totally different to the horror I imagined.

I just take one pill a day and i feel great!!!!!!

Hang on in there hun and remember you will be ok once your on the meds and the shock has worn off.

very best wishes to you,

yvette xxxxxxxxxxxxxxxxxx

[Jili in reply to kentgal]

Thanks Kentgal for your support, I really need support.

[Davidthomas06]

An old adage, you start at the very beginning. It does get better, I am only 2 years down the track but I have learned to accept it(easily said I know. I am happy to talk/communicate if you wish.

David

[Jili in reply to Davidthomas06]

Thanks David, I would really appreciate your advice. What's the best med combination if the clinic decides to put me on medication?

[n4dave in reply to Jili]

The clinic decides the best combo on many things .. some tablets have string side effects so like myself my combination has changed many times since I started back in 1997/8.

various blood tests not only for hiv but liver and kidney functions will make them decide the best tablets for you

[Griffon]

THERE IS NO CURE - THIS HAS TO BE A SCAM .

[Jili in reply to Griffon]

Thanks Griffon

[Joey9009 in reply to Jili]

Jili I was diagnosed in late 97 almost 20 years, in time u'll feel calmer & better in urself & stronger too! I am undetectable & a cd4 on last 6 Monthly visit was nearly a 1000 copies! Can I just say, it's a virus not a disease, virus's are drug controlled & yes physicaly & mentally are two diffetent things to consider... physically your doctor will advise u best but mentally using or listening or allowing u to think or feel you're diseased is a negative way to look at it, a virus is drug controlled & u will remain healthy so long as u keep a good positive mind & believe me when I say Jili yes it's a shock & it's hard to understand all the info from Cd4 to viral load, basically ur cd4 are the copies that sustain ur body healthy & the virus is the hiv multiplying in ur body (blood), but with the advancement of the medication today it's one tablet daily, that's it & in time u will feel better both physically & mentally, time is a great healer I promise, keep a positive mind & u'll be great, the medication will do the rest! 😊 kind regards joey9009

[Jili in reply to Joey9009]

Thanks Joey9009 for your words of encouragement

[Joey9009 in reply to Jili]

Jili if u need to ask me anything around hiv just ask, I'm a sexual advisor on sexual health & did my training in the area of hiv & sti's & Lifecoaching too, so don't hesitate to ask whatever u want, remember as lonlely as it feels right now, you're not alone! 😊

[Jili in reply to Joey9009]

Thanks Joey9009. I do have a few questions:

1. I've always been doing routine HIV tests four times a year for the past four years. All of a sudden my March test came back negative. They did a CD4 test and it indicated that my CD4 is 188. My question is does CD4 has any link to the time of infection? All other tests for other sexually transmitted diseases came back negative.

[Joey9009 in reply to Jili]

It all depends, ur cd4 is effected by how long the virus is in ur system & the strength of the virus u picked up, if the person who infected u was highly infectious, then that can determine ur cd4 count, but u said the test in March 17 came back negative?

[Jili in reply to Joey9009]

My mistake Joey9009, the 17 March test came back positive. I'm still not sure how I became HIV positive as my partner passed away in 2010 in an accident and i've been testing negative all these years.

[Joey9009 in reply to Jili]

Before the 17th of March when did u test last?

[Jili in reply to Joey9009]

I tested in November 2016 and it came back negative

[Joey9009 in reply to Jili]

So between November 16 until March 17, did u have any sexual contact with anyone Jili?

[Jili in reply to Joey9009]

Yes I did and we used protection

[Joey9009 in reply to Jili]

Well I can't speculate but my x boyfriend was infected by cross infection & he used a condom too, but he tested positive for syphilis along side hiv! So if ur sti tests came back negative, then it's not my place to speculate, sorry Jili, I don't want to say the wrong thing to u at this moment!

[Jili in reply to Joey9009]

It's ok Joey9009, I'm so glad to have people like you who provide words of encouragement during this difficult time and who try to help people like me to come to terms with what happened. I really appreciate your help and advice. My biggest concern is my CD4 count.

[Joey9009 in reply to Jili]

Jili ur cd4 count will eventually rise up again, once the meds kick in effectively over the next few Months, try not to be so concerned, it will & u'll feel much better in due course... promise! 😊

[Jili in reply to Joey9009]

Thank you so much Joey9009

[Jim1962]

take a deep breath, relax and rest your mind, the new meds are easier on your system plus I'm down to just one HIV pill a day, I take Genvoya. For the past 32 years I've been living with this virus in my system, starting with a handful of pills in 97' to just the one a day. Keep in mind that you don't want to pass this on to anyone else, just play safe and treat your body like a Temple, keep informed and eat healthy.

[n4dave]

This seems a good place to start with any anxieties you have.

Some of us have been through the mad stuff years back but are here strong and willing to help out

[LondonFit]

Start the treatment straight away

[Lovems in reply to LondonFit]

Or when your docs say

[Okidoak]

Don't worry too much. Life goes on as normal. I am HIV pos since 2013. Still nobody knows. It's a bit of weight to carry. I'm on 1 tablet a day.and go for regular check ups.

Life is not at and end.

[Jili]

I'm adhering to the treatment but my biggest problem is that the Odimune (Atripla) that I'm taking makes me feel drunk the whole day and night. It's been a week now taking the treatment but this side effect doesn't go away. It makes it difficult for me to wake up and go to work. At least the bad dreams are now gone but the feeling of being drunk the whole day and night put me in danger of being hit by cars or being involved in an accident

[Lovems in reply to Jili]

Tell your docs and see if there are alternatives - there are lots of combos now.

[Jili in reply to Lovems]

Thanks Lovems, I'll talk to the doc. The Atripla that I'm taking makes me feel drunk the whole day and night. It's difficult to go to work

[Joey9009 in reply to Jili]

Jili I am on the same tablets & lile u I felt so drunk & out f my body nearly, I spoke to the doctor & they advised me to take them at night 2 hours before sleeping, again that gave me amnesia, so now I take them just as I go to bed to sleep & sleep now much better! The vivit dreams ur having Jili will eventually subside, ur body just has yo adjust to the medication, if not, speak to the doctors, but I went tru the exact same side effect with Atripla! Rest ur mind! 😊