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Diagnosis HIV+. Sucks! But you don't need me to tell you that. Been there done that. Still here ... so it's not so bad after all. Forget about AIDS and all the horror scenarios that you go over in your head right now.
I joined Gemini in part to share my HIV experiences in a more anonymous way. It's a life changing (not ending!) diagnosis. Quite a scary one. I hope that by sharing some of my insights I can help anyone else out.
Please note. I'm not a doctor. I'm not an expert. I'm living with HIV and share my experience to give you pointers. Speak to a medical professional about the details that matter to YOU, YOUR life and YOUR HIV infection. It's not all the same!
The first thing you need to realize is that HIV is treatable and modern medication is easy, effective and usually without side effects. If you have acces to it, take it. NOW!
Old news shows HIV parients drowning the virus in a highly toxic cocktail of different meds taken at multiple times every day. Those usually had really bad side effects and damaged patient's health in other ways.
These days are long gone!
I take a pill, once a day, every day. For years now, no side effects, no pain, no AIDS and no viral load. I'm literally HIV negative in every test.
Medication types vary from region to region. In the west Truvada is a name I read a lot. It's a cocktail of two compounds. This medicine has also been converted to regular injections in intervals of two months instead of having to take a daily pill.
FDA Approves First Injectable Treatment for HIV Pre-Exposure Prevention
Other medication often contains three compounds achieving the same goals. I personally don't mind not being on Truvada (yet) as other medication can be had from cheaper sources.
In any case you should discuss the right medication with your doctor. It might be worth talking about availability issues, etc.
HIV medication needs a refresh every so often. All pills I know need to be taken daily. The injections need to be done every two months (based on my latest information).
It's important that you adhere to that. Missing even a single may lead to a spike in viral load and worse yet may produce a new mutation of the virus that is resistant to your medication. In a worst case scenario that new mutation infects you once again and you lose your U=U status (see more below). In that case you may need to switch to a different medication.
There's a lot of different medication but you really don't want to burn your available options for no reason. Don't forget to take you pill!
HIV medication is horrifically expensive. The good news is that in most developed countries that have a general health insurance the cost is covered 100%. In the US - where healthcare is more of privilege for the rich - it may be difficult but I found several progams that can help. Check out the links below.
Interestingly enough prices for HIV medication vary wildly in different regions of the world. I received my diagnosis whil being in a less developed part of the world. Medication there cost me about 20$ for a month. Made in India. Back in Europe that same medication is priced around 800$ a month.
At the moment I'm stuck without good health insurance covering me on that. So I actually fly out to get a supply of cheap med every quarter or so. If that's an option for you, it might considerably reduces your cost.
Healthline - How to Navigate HIV Care If You Don’t Have Insurance
You will see people say U=U meanding undetectable equals untransmittable.
The goal of HIV treatment is to reduce your viral load so much that it's undetectable. This means that the lab is not able to find sufficiant quantities of the virus in your blood that it would register on the machine. That threshold is less then 200 copies of HIV per ml.
My lab has two machines. An older one that doesn't detect below that amound and one that does. So if your lab detect something like 20 copies per ml don't worry, it's still good.
When you are considered undetectable there is no way you could infect anyone short of a direct bood transfusion.
HIV still carries a huge stigma. Not as bad as it used to be but I chose to keep it a secret from anyone who isn't concerned.
That means I reached out to anyone I had sex with to get them tested. Especially those who didn't use protection. In my case they all came back negative. But you owe them a warning regardless. Don't let them get sick because of your shame!
Shame's a big one. Don't let it stop you from getting treatment or share with friends and familily if you know that they can handle it.
I wish I had a more sane family to share this with. But I know that their heads would spin this into images of death and dispear and they would never stop worrying. Some would even hate the person I love for bringing this "upon" me.
So we keep it a secret and at least at first I recommend this for anyone else too. Some people aren't able to cope with it, no matter how much things have changed. Once revealed there is no way back and it might not be worth it.
IMPORTANT: Countries and states have different laws about your requirement to disclose an infection. Act accordingly.
Remember U=U? Means you're not dangerous. You cannot infect anyone with an undetectable viral load.
And yet people will likely not take the percieved risk if/when you disclose. So if you have the legal freedom to do so and you're U=U thhink about it.
In the end it's up to you and what your goals are. If you're after more then just a hookup then it's a good idea to be clear from the get go. Imagine you slept with somebody for months and only then they tell you. Not a nice feeling.
aidsmap - HIV criminalisation laws around the world
When you're in treatment your meds usually act like PrEP. They will destroy any new HIV entering your body immidiatly.
HOWEVER that does not mean you don't have to ever worry about protection again. Other STD's and STI's exist! HepC and Siphilis are still a thing to look out for and your HIV maps will not protect you against those bugs.
So the sensible advice is to use protection regardless.
The receiver during a sexual act or simply the bottom regardless of gender. The top has only a very small to no risk at all.
My own experience was that none of the partners I had unprotected sex with during my positive phase (I dind't know at that point) have been infected despite multiple encounters. A big relief for me but also a good indicator that the active partner is not at serious risk.
Oral sex is generally risk free no matter the position.
Travelling with HIV is generally not a problem. However some countries have very draconian laws about HIV regardless of your status. Before you go anywhere, just check if there are any laws that could make life difficult for you.
Another issue is the timing of your medication. On longer trips you might run out. So make sure to get enough of a reserve from you doctor. Sadly medication amounts are limited in most countries. Three months is about the top I manage to get from my doc after a bit of begging.
In other places it may only be a single month. However there we got a second dose explaining that we'd be abroad for a while. So it's all possible. Just make sure you plan ahead.
As for customs I never had anyone check the medication. It may still be a good idea to keep a copy the prescription on your phone. Just in case.
Living with HIV you cannot donate blood regardless of your status.
My doctor told me that the HIV medication I take encourages hunger. Well ... I gained weight but I wouldn't blame my med for that.
Other then that medication may require you to eat before or after. Others may not. I don't usually eat anything around my med time and it works just fine. But I only do that because of the medicine not requiring it.
As for food there where no limiations given to me. Alcohol is a taboo, so is smoking. At least according to my doctor.
My HIV infected spouse smokes and occasionaly drinks a glass of alcohol and maintains U=U.
If you want to drink and smoke consider small doses to see if it increases your viral loads between tests. I'd think it's OK to have a glass on the weekend but the med might become uneffective if you drink a bottle of wine every night. Besides, it might totally depend on your body's chemistry.
HIV attacks your immune system. HIV treatment targets the virus in your blood. That's extremely effective but it also means that there are areas it might not reach. That's why you need to take your meds on repeat and it's still not fully curable.
I noticed that I get sicker more easily and that it takes me longer to recover.
This may be related to other reasons since my blood tests confirm a stable immune system. However it might also mean that some parts of me just can't recover as well as they used to.
I pay attention to my Vitamin D levels. Get sun or take a supplement for it. Eating healthy is always a good idea ;)
Other then that I noticed no changes. Modern medication does not tend to give you bad sideeffects like diarrhea. So forget about those horror stories you may have read.
I don't know.
At the moment there is no cure. A few compaies are working towards a true cure but I would advise against getting your hopes up. Medicine is not an overnight process. Even if a cure would work right now it would still take years to test and certify a treatment.
Viral surpression without side effects or particular effort is already a huge achievement many of the early patients could have only dreamed about. Most of them died without any treatment at all.
I prefer to think about that instead of hoping for a cure that may never arrive.
I've heard from people who believe that big pharma keeps the cure for HIV back so they can rake in the dough from the recurring treatment.
Big Pharma isn't known for modesty but I would warn anyone from jumping to hasty conclusions. There's no evidence of an effective cure and the companies working on it seem to be independent ones anyway.
Might be worth considering before blindly adoting a conspiracy theory ;)
There are three or so people who have been effectivly cured. They however suffered from a type of cancer that required a bone marrow transplant. Not the kind of procedure you would do on a whim.
After the treatment their HIV was no longer detected despite them not taking their medication anymore.
I would not willingly go through that risky procedure just to cure HIV. I'd rather stick to my pill.
So these are edge cases and not a viable cure for the millions of HIV patients worldwide.
HIV is a chronic illness. A bit like high blood pressure and many others. It's a deadly killer if left untreated but treatment is available. Don't shy away from it or let anyone tell you it'd be bad for you. It's probably the only thing that can safe you from getting AIDS. And that's not something you want to aim for.
My biggest gripes are the secrecy I have to maintain (by choice) and the dependency on medication that may be hard to get and may only be stockpiled in small quantities.
Life has changed but most importantly life is going on. I can't help but think about the grimm alternative and how me and the love of my life would have likely withered away by now.
If you just "joined" the world of HIV patients it's only natural that you assume the worst. The only thing I can say to you is don't panic. Read and learn about your illness. Seek medical advice and take your treatment. Make sure not to infect others and to get to U=U as soon as possible. It doesn't take long.
Lots of love and take good care of yourself.