Hiv without meds

[Guest JizzDumpWI]

Brarbandit... Thank you... VoR is not grounded in any more than conspiracy theory bull. He lacks a grasp of reality... Seems to be stuck in the mid 80's. Thankfully rawTOP has a great remedy on this site for posters like him...

I am puzzled by OP position... More reticence about HIV meds than HIV itself. Is one of my concerns with the substantial chase mentality here on BZ, that some will eroticize HIV to their own demise. At one time poz was the near inevitable consequence of bare sex amongst men. But that is no longer true. Too much misinformation has posters here still thinking PrEP is still experimental rather than knowing it is an FDA approved treatment. Does this mean we are all feeding "big pharma"? We are and will until social pressure changes that. Dead guys won 't help that cause.

[bearbandit]

Thank you rawTOP: my tongue and hole wherever you want them...

[bbsaft]

I don't believe that a healthy live doesn't matter. I understand people recommend the meds, but I don't like to hear that because I don't have a lot of trust in the medical sector anymore. It's all about the money. Hospitals have KPIs to achieve and it is not patient centric. They care about public health, not individual.

[Guest JizzDumpWI]

Clearly is your life to live bbsaft, or not. Absolutely nothing wrong making other healthy choices, fitness and food. That definitely will be good for you. But HIV is not going to abate either due to food choices, or exercise. Good luck to you.

[rawTOP]

I don't believe that a healthy live doesn't matter. I understand people recommend the meds, but I don't like to hear that because I don't have a lot of trust in the medical sector anymore. It's all about the money. Hospitals have KPIs to achieve and it is not patient centric. They care about public health, not individual.

I have reason to think a lot like you do. There are threads on here and blog posts on rawtop.com where I explain why that is. And I was really suspicious of PrEP when it was first announced. BUT at the end of the day there is 17 years of data with people on ARVs. The initial issues with early ARVs are largely no longer found in current ARVs. The ARVs today are pretty safe. And all those years of data tell us one thing - no ARVs = a quick death, taking ARVs too late = and early death, and taking ARVs before you go below 300 t-cells = a pretty normal life.

Yes, there's a lot to be suspicious about when it comes to big pharma. But ARVs work. That much is undeniable.

[GermanFucker]

I don't believe that a healthy live doesn't matter. I understand people recommend the meds, but I don't like to hear that because I don't have a lot of trust in the medical sector anymore. It's all about the money. Hospitals have KPIs to achieve and it is not patient centric. They care about public health, not individual.

The problem is: Your life won't be healthy anymore. Since you have HIV, that's just how it is. You will probably live another 4 years or so, even without meds. But not only will your quality of life diminish over time, the damage the virus will do will be permanent, even if you decide to go on meds down the road.

There is no ideal option. Every medication has downsides and side effects (even aspirin). The right time to start going on meds is when the damage the virus will do to you far outweighs any damage meds could do to you. And you have just about reached that point.

The real question is: Will your life be healthiER with meds? Statistically speaking: Yes. Of course statistics can never fully predict what's good for you. Maybe you have another six months before you absolutely have to go on meds. Maybe you should have started a year ago. Only a doctor can advise you on that. So I hope you have / will find a good one you can trust.

But if you like to hear it or not: If your longterm health and quality of life indeed matter to you, the time to take the necessary steps and discuss your options is indeed now.

[wood]

I don't believe that a healthy live doesn't matter. I understand people recommend the meds, but I don't like to hear that because I don't have a lot of trust in the medical sector anymore. It's all about the money. Hospitals have KPIs to achieve and it is not patient centric. They care about public health, not individual.

Okay, so heres the thing, you dont trust it, so you want a different answer, the problem is there isnt a different answer.

Point blank people died in droves in the 80's and 90s from the disease you have, and you will too without help from the medical community, whether you trust it or not. Do you understand that?

Not only that opportunistic infections are not just colds and flu's. My good friend who was just diagnosed poz last year, and he caught it very early, developed a cancerous anal lesion during that time due to his compromised immune system. Luckily it was caught early, and simple laser treatment worked. However, how happy would you be living out your days sick and without the ability to have sex due to anal cancer, all because you refuse to take pills or trust the medical community. Pretty silly IMO.

Also as it was stated before, all you are doing is committing passive suicide through a long and painful process. Good luck to you, but I have little hope unless you change your thinking.

Edited December 20, 2013 by wood

[bearbandit]

I don't believe that a healthy live doesn't matter. I understand people recommend the meds, but I don't like to hear that because I don't have a lot of trust in the medical sector anymore. It's all about the money. Hospitals have KPIs to achieve and it is not patient centric. They care about public health, not individual.

You're in the position I was in in the mid eighties. Except I didn't have an array of proven therapeutic drugs in front of me. Oh, BTW, this is the UK where treatment is free. I've stumbled from new drug to new drug in an effort to stay alive, and have the scars to prove it. I've injected £100-a-shot (provided by the National Health Service and therefore free to us) medication into a dying lover. If you want to know about the miseries of untreated HIV disease, I can tell you, simply because when I, and most of my friends, were diagnosed there were no fuckin' treatments and you're getting precious about the politics of the medical sector.

Sure hospitals have to balance budgets: there was even an argument over whether or not to test my for HLA-B*5701 ("Oh, we might as well, it only costs £50"). That decision saved my life: abacavir is as good as cyanide for me because I have two copies of that gene (one from my father, one from my mother - thanks a bunch!).

Take it from an old-timer: get yourself to your hospital and say "gimme the drugs". They're more refined now, the dosages are more finely calibrated to cause less harm, and with number like yours you bloody need them. You won't go through the shit that I and many others went through because they've learned from us. At the risk of moral blackmail, by refusing the drugs which you so clearly need, you're pissing (not in a good way) on our experiences as we tested those drugs.

[Bottom Jim]

It boggles my mind why you would not take the drugs. Dying of AIDS is not something I would wish on anyone. I have see friends and it is a horrible death. If there are drug options by all means use them. I had hep B several years ago ans was so sick it was not even funny. Never would I go through that again. And AIDS is far worse

[Guest JizzDumpWI]

I'm pretty sure bbsaft favors the passive suicide option. Not a choice all of the last several posters would make, but certainly is his to make. bbsaft seems to take the either/or option rather than the either/and option.

I would not wish HIV on anyone. But once there, I would wish every opportunity for a long and healthy life. What ties us all together is that we love raw sex. Each of us, no matter avoidance attempts could possibly convert if we haven't already. When that happens, better to take ARV's early and often; combined with other healthy life choices.

[barebackerboy]

my advice is to take the meds mate ive seen peole die from hiv and its not nice I also still suffer from that infection in my mouth and my cd4 has improved since being on medication and I started at cd4 being 350 I understand your probably not raedy to take the pills yet its a harsh reminder that your doomed and your going to die but we are all going to die one day at least you got a good idea whats going to kill you it really is your choice mate but you have to face upto your diagnosis the reality of it and just take the fucking pills I just set a daily reminder on my phone and keep some with me at all times I don't think twice about them anymore I let the clinic do all that when I go for my quarterly bloods that's what the are there for

[TigerMilner]

Taking the meds is not that big of a deal. But if you don't, you may not have the long drawn out demise that other posters have warned about. I have had three friends who died within days of a an unexpected infection. Sometimes AIDS deaths are quick. Maybe you will be lucky. Whatever that means to you.

[wood]

Taking the meds is not that big of a deal. But if you don't, you may not have the long drawn out demise that other posters have warned about. I have had three friends who died within days of a an unexpected infection. Sometimes AIDS deaths are quick. Maybe you will be lucky. Whatever that means to you.

Or sometimes they are drawn out and painful. I had a friend die this past summer. He was 27. He was probably infected around 20, and NEVER got treatment. For the last three years of his life he was always sick, and tired. Eventually in mid april his mom came to his apartment and pulled him out. 6' guy weighed about 110lbs. It was then that they discovered he also had a massive brain tumor probably brought out by his almost complete lack of an immune system. He was dead by July.

Im sorry but who in their right mind wants to go that way!?!?!?!

[Versguy72]

If you you fail to get on treatment for HIV it will kill your immune system.  Once your CD4 count get below 200 you now have AIDS and if continue down this road it's not HIV that will kill you it will be an opportunistic infection that will take you out.  

 

Another poster mentioned that sometimes HIV will not will not completely destroy you immune system and some choose not to go on meds.  However, that is still not really a good choice to make, in my opinion, My ID explained this to me like this.  These types of people whos immune system are not completely destroyed by HIV have very strong immune system to begin with.  Their immune system are in a constant battle with HIV each day.  What most people don't realize is that your body is in a constant state of overdrive.  This caused its own issues. The med pick the fight for you so that your body in not being constantly being stress fighting HIV everyday

 

I have been taken Stirbild for just over 2 years.  I have noticed no real side effects other than when I first started taken it I had some soft stool issues.  A person living with HIV today who is on treatment and has an UD viral load has the same life expectancy as someone not living with HIV. 

 

I sure some who are negative will read this and then there are the "bug chasers"  Just because there are medication to keep HIV check today it still very important to be tested on a regular basis to know your status.  If someone does test positive they need to make sure that get blood labs done and monitor how the particular strain of HIV is effecting them.  

 

Myself for example.  My last negative test was 5/01/12 and was getting tested every 6 months.  My next test was 01/18/13 and I tested positive.  There was just over 6 month between my test.  What my blood work relieved were a couple things.  I strain of HIV that was resistant to rilpivirine and my first CD4 count came in at 220.  The strain that I was infected with was aggressive and resistant type.  My CD4 count has been slow to come back and is now just at 430.  It takes long time for your body to rebuild your immune system.  I have also been diagnosis with a mild form of H.A.N.D  My ID tells me that with time on med I should improve,but the problem is that the meds I take are not good at getting getting HIV out of the brain.  The one drug that has had the best result just happen to be rilpivirine which is the drug I have a resistance too

 

Then a have younger friend who failed to get tested on a regular basis and became infected by HIV.  He started to have sever neurological problems and this is when they determined that he was infected with HIV.  His first blood work reveled that he had a CD4 count was 6.  He now has permanent neurological damage and needs to use a wheelchair to get around at the age of 25.  He is also taken Stirbild and has been on treatment for about 2 years and his CD4 count is hover around 200.  

 

 

Okay off my soap box.  Get tested on regular basis and if you happen to become infected with HIV get on treatment as soon as possible!  

Edited March 20, 2015 by Versguy72

[ZonovX]

Bbsaft,

I hope this finds you with us still. I am not as knowledgeable as a lot of the men on here. I am simply living with HIV and can only relate to you and others my story. The choice to go on meds is yours. Just as the choice to bareback or have unsafe sex was.  Please consider though that you are infecting others and contributing to the medical problems you do not want to be part of. I was diagnosed in May of 2014. Up to that point, i occasionally thought about becoming 'poz' but never really gave a shit one way or the other. For most of 2014 up to diagnosis, i was having hot and cold spells, night sweats, tired, just didnt feel good. My first and only HIV test to that point in my life had been at 17 for the military.  On a Saturday, i ran to town and made 2 quick stops. When I got back home, I felft like I couldn't catch my breath. After an hour, I went to the ER where they started treating me for a possible heart attack. I was 44 yo. In running all their tests, they found three masses in my liver. They transfered me that day to a bigger medical center where I was diagnosed with Lymphoma, cancer. I stayed there for about 5 days before they found that the cancer was also in my spine, hips, femurs, lymph nodes, stomach.  With it in my spine, they could not treat me. I was very fortunate, as one of the premier medical institutions in the world was less than two hours drive away. Mayo Clinic.

 

Once I got to Mayo, they did their own thing with testing prior to starting me on chemo for the cancer. When they did, they found I was positive for Hep. B. At some point in the past, I had had at least one HepB outbreak and didnt even know it or get treatment for it.  That caused them to do the HIV testing and I was positive. In less than a week I was diagnosed with Cancer and HIV. What a load to get hit by.

 

My initial testing showed that I had a CD4 count of 16 and a VL of 109,000. They immediately put me on Truvada and Isentress and started my chemo. From then until a month or two ago, I spent more time in the hospital sick than I did out. My VL went down quickly on the meds, but my CD4 stayed where it was. More than once in this time, my family did not think I would live, nor did I.

 

However, I am still here, and it is solely because of the medical community and the great physicians who cared for me. I would not be here writing this had it not been for them.  I have no clue how long I was positive prior to finding out. I would guess a while. Prior to being diagnosed, I had been in the hospital over 10 times for surgeries, rehabs, etc not related at all to HIV.  I would gladly take all of them rolled into one than go throught the last year of my life again.

 

Since the initial test, I have been diagnosed with VRE, CMV, Hep. B, MAC, HSV1 and multiple fractures of my spine. I do not work now, rarely leave the house, and survive on disability. While HIV may kill you in the long run, without meds, it will be something far more mundane that does you in. My original ID doctor told me that as long as I took my meds daily, my diabetes would kill me well before HIV did.

As of tonight, I am on Triumeq once a day. I feel good, I am no longer sick daily, and I have had ZERO side effects from any of the three ARV's. I do still suffer from depression and other non-HIV related diseases. My CD4 was just tested and it was 266. Second month in a row greater than 200. I have also been undetectable VL for 6 months or so.

 

Bbsaft, if you are adamant about not taking meds, please give my condolensces to your family. It will not be a pleasurable experience for either of you, and you will lose the fight. Or non-fight in your case. Also, please have the decency to inform your partners ahead of time of your status. Let them make an informed choice, whatever that may be for them. No judgements from me.

 

I would never wish this disease on another person. Since diagnosis I have not been with anyone that has not known well prior to any sex that I was positive. Some have chosen to have sex, some have ignored me from then on. That's fine. At least I know that since diagnosis, every partner has been given a chance to decide for themselves.

 

I pray you are still with us, and started your treatment long ago.

 

For those who read this that are debating treatment, don't. Get the meds!!