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Certain HIV positive, but negative tests (Page 92)

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August 26th, 2013
Experienced User
Isthereahope have been dignosed with poly neuropathy, disseminated TB, EBV and mycoplasma. It look more related to HIV especially TB. So are we suffering with late HIV sydrome.
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replied August 26th, 2013
Extremely eHealthy
Hassan,

You can test for HIV every day of your life and it will never be positive - you do not have HIV !!!

Best wishes.
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replied August 26th, 2013
Experienced User
Tony,
I'm going to quote something you said and I'm going to ask you something about that.
You said,
"I am seeking testing for HTLV 1, 2, 3, 4, 5, as well as HTLV particles p21e, K10, BA21 etc."

My questions are,
#1.How are you going to test for HTLV5 and other variants?
And
#2.How do you convince a doctor to test you for something he doesn't even know about and even something that is not available to them, like for example, HTLV particles p21e, K10, BA21 etc.?
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replied August 26th, 2013
Experienced User
So here we only have two option here

1. Undetectable HIV
2. Undetectable HTLV

Both dont have treatment. So let just got trough our everyday life and wait till we died. Im really sorry that i drag all my family in this situation i can do nothing anymore just wait n died.
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replied August 26th, 2013
Extremely eHealthy
Hassan,

Well written, but we don't have HIV; so that leaves option #2, and we can fight for treatment.

Best wishes.
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replied August 26th, 2013
Extremely eHealthy
Hassan,

Well written, but we don't have HIV; so that leaves option #2, and we can fight for treatment.

Best wishes.
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replied August 26th, 2013
Experienced User
Tony why you are so confident that this is not HIV but is HTLV??? So i can take a deep breath and forget about HIV that always in my mind.
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replied August 27th, 2013
Extremely eHealthy
Hassan,

It can be logically proven that this is not HIV:

1. T-cell count goes down with HIV, with HTLV the count goes high or stay normal.

2. HIV testing is conclusive, HTLV testing is not.

However, HTLV brings a host of problems with it, including Uveitis (eye), Aveolitis (lung), Dermatitis (skin), Mycosis Fungiodes (skin), HAM (paralysis), lymphoma and leukemia.

Best wishes.
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replied August 27th, 2013
Experienced User
So what should we do and how can we seek for any medical treatment ASAP?? Dr. dont really care about this HTLV even here in Malaysia they dont do HTLV test. Where can we get help. There also no one here in this forum positive for both Virus HIV or HTLV so how we gonna prove it and get treatment?
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replied August 27th, 2013
Extremely eHealthy
Hassan,

The proof for HTLV is not easy, I would suggest the flower cell blood smear test as a start.

If any of us can prove that we have HTLV, it can be treated with Tenofovir, Azacytidine, Bortezomib, etc.

Best wishes.
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replied August 28th, 2013
Experienced User
The more I read about HTLV the more I know that this is ruthless condition....how can this not be published more and talked about more.... I never heard of this before I got ill and I know the girl that gave this too me never heard of it either...I'm not even pissed at her anymore because so many people don't show any symptoms at all she prolly didn't even know she had it.... if you are one of the unnfortunate to experience problems, its nasty!
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replied August 29th, 2013
Extremely eHealthy
Goose,

Yes, I ask myself that same question every day - how can this be so published yet never mentioned to ANY of us? This is what makes it seem like a cover up.

Best wishes.
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replied August 28th, 2013
Experienced User
The more I read about HTLV the more I know that this is ruthless condition....how can this not be published more and talked about more.... I never heard of this before I got ill and I know the girl that gave this too me never heard of it either...I'm not even pissed at her anymore because so many people don't show any symptoms at all she prolly didn't even know she had it.... if you are one of the unnfortunate to experience problems, its nasty!
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replied August 27th, 2013
Hi guys,

You all seem to be experiencing what I'm experiencing at the moment. Here's my story...

Around six years ago, I was with a guy who could well have been pretty high-risk for HIV. At the time, I was young and naive and, as far as I was concerned, the worst possible thing that could have happened to me was getting pregnant. I didn't even THINK about catching STDs, which I realise now was pretty stupid...but hey, I'm certainly learning from my mistakes in the worst way.

About six or seven months into this relationship (so this was in around June/July 2007) I got sick with sore throat, swollen glands (which lasted for a few weeks), fever (which lasted a couple of days), thrush and a red spotty rash on the roof of my mouth. At this point, I had only engaged in oral sex (albeit, involving swallowing semen which I understand could well have put me at risk). Of course, all of these symptoms concerned me greatly, and I asked my (now ex) boyfriend if it was possible he could have HIV. He seemed to think it pretty unlikely but told me to put my mind at rest, he'd start donating blood. I would criticise him for not going to a GUM clinic to get tested, but fact is, I didn't either- As I said, I was young and naive, I trusted him and I'm completely aware that the mess I'm in now is my own stupid fault! Once he'd (apparently) donated blood a few times without getting contacted, I assumed everything was fine and carried on. I was with him until 2011.

Now that I think back to the relationship, I realise that his health was not good at all throughout it. He had recurrent bouts of tonsillitis, sinus infections, skin problems and stomach issues (apparently related to allergies). I also realise that my health had been declining since then but I hadn't really noticed it until this year when I started feeling really sick again with bad headaches, swollen glands, mouth sores and warts, eye floaters, muscle aches, neuropathy, thrush, and a myriad of other symptoms which all seem like they *could* relate to late-stage HIV infection. What makes things worse is that I'm with a new boyfriend and, whilst we've never had unprotected sex, we certainly haven't been as careful as we could have been and (horribly enough) he does seem to be experiencing some of the symptoms I have been experiencing as well...

Okay, here's the point where you all tell me to 'go and get tested for heaven's sake!' but the thing is I have- three times! The first time I had a full STD screening (which missed out herpes and hpv- but I plan to have separate tests for those at some point) which came back negative for everything, the second time just an HIV/Syphilis test, which again came back negative, and the third time, I had a test privately, under the assumption that perhaps the result would be different from a different laboratory- again, negative. All of these tests were 4th generation ab/ag tests. I have been in touch with my ex boyfriend who says that he's since tested negative for everything at a GUM clinic too but I'm not really sure I can trust his word...

In my mind, I really do seem to have experienced the natural progression of HIV to AIDS- from the sero-conversion illness six years ago, to the onset of late-stage HIV now. I have had three complete blood counts over this period as well, and although they have all been in the normal ranges, I have noticed a decline in my lymphocytes from the first one to the last one.

I have read all the literature about late-stage seroreversion, rare subtypes, seronegative HIV, etc and I'm thinking I must fit into one of these categories somehow. It's just difficult to prove when, at present,I can still walk around and look pretty much okay.

1. Would you recommend a different type of test? Should I try one that actually looks for the virus or try and get a lymphocyte subset to check on my CD4 count?

2. I'm getting a quantitative immunoglobulin test on Thursday as, regardless of whether I have HIV or not, there is definitely something very off with my immune system. If I DID (theoretically) have late-stage HIV infection, could I be certain that this test would show that something was amiss?

Many thanks in advance for any help you can give me with these questions. I've pretty much come to terms with the fact that I'm going to die and that it's going to be horrible, but it'd be nice not to have to deal with this entirely alone...
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replied August 27th, 2013
Experienced User
Givenup88,
It's difficult while you are wondering if what you have is hiv, it took me 9 months to finally feel as if definitely i don't have hiv, and although there is the theoratical possibility that i might have hiv, i know its near to impossible.
A few storyies i read about people's window periods and some tests was proof to me that i don't have hiv.
I hope this forum helps you put hiv behind you.
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replied August 27th, 2013
Experienced User
There are to be a million people that have ditectable antibody why we are here in this forum have the rare one and all the doctor dont give a damn with all our symptom. They just depen only on the test. I know from the first place this is HIV but no one would belive me even my own wife dont belive me. 5 years is long time for me to sufferfrom stomach growling and loose stool. I hope every one just hangon and just enjoy the rest of our life to the fullest everyone will die someday and we already make mistake just pray to god this would not be hard for us to face and hope i will not died with AIDS.
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Users who thank Hassan_mat_88 for this post: Givenup88 

replied August 27th, 2013
I hope that for you too, Hassan. I really feel like there's no hope for me but I just want to get diagnosed so I know whether my illness has potentially affected other people (namely, my boyfriend and my family). I genuinely don't care whether I live or die anymore- I just want the other people in my life to be able to enjoy life, even if I can't.
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replied August 27th, 2013
Experienced User
Now everyone seem dont have the answer but our feeling always leed us to only one Virus it is HIV virus and we have to accept it that ours is rare subtype of HIV but the Doctors and the whole world dosent care the just follow the CDC guideline before this they said 1 year they will follow 1 year then sundenly the chage to 3 month than everybody will follow 3 month. But they put rarely antibody show latter than 3 month and no 100% conclusive for that. After 30years they still cannot detect the doorman HIV virus directly in the body the still depen on the antibody.
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replied August 27th, 2013
Extremely eHealthy
Hassan,

Everyone talks about HIV, including governments, education systems, health organizations, etc. You know what's not talked about? HTLV. No one cares if this disease spreads and kills 20 million people. As long as we don't have HIV, no one cares about us, period.

Best wishes.
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replied August 28th, 2013
Experienced User
Yup! everybody talk about it i agree but they dont talk about the rarest cases they dont care who sundenlly die on AIDS but have Negative HIV antibody. 20 millions with HTLV that i never heard before i only heard that 20 millions people had HIV. Even Dr. BOB Died with HIV not HTLV. No one ever in this forum including you tony had negative HTLV test. We also experience the same with HIV test. Evryone in this forum is here because they know its HIV at the first place. What happen to all of them i read all the post most of them had HIV early stage symptom that no single thing miss all the infection with HIV. We have to find who is the pionner that in the first place get this rare subtype HIV virus we have to here from their story and experience hope someday the will be someone here share their story about that latr hiv cases it is real.
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replied August 28th, 2013
Extremely eHealthy
There's no such thing as someone dying of HIV without a positive test for it. Doctor Bob died from Sepsis, which is a common cause of death for people with HTLV. Most HIV positive people are also infected with HTLV, but because NO ONE ever talks about it, they are never tested for it. Get it? NO ONE EVER TALKS ABOUT HTLV SO PEOPLE JUST DIE OF IT, including Doctor Bob.

Best wishes.
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replied August 28th, 2013
My question is. . hiv rna pcr test at 65th day after contact is conclusive or not ...is pcr test is negative on 65th day.then I need to go for another test or not..plz help me
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replied August 28th, 2013
Extremely eHealthy
Amit,

Three month antibody test is conclusive for HIV.

Best wishes.
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replied August 28th, 2013
Experienced User
I also ask the same question 5 years ago until no,w but still have no answer. My symptom is still with me after the exposure and ARS.
1. loose stool
2. Eye flooters
3. Growling stomach
4. Sensetif skin
5. Dry mouth and lack of saliva
6. Nerou problem
7. Night sweat

If u dont have any the above problem and have negative test you can enjoy the rest of your life. If you have experience all those symptoms you might have to dignos it by yourself that what we all do in this forum. Stay safe bro!
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replied August 28th, 2013
Experienced User
Givenup88

Let me say welcome to this forum even though the it is the result of an ill why you are here, sorry.

I think you are the first female to grace this forum and share your illness with us. At one point we were wondering if this was a male site or it's only male that have undiagnosed symptoms.

Let me say that and i will speak for everyone on this site that we are indeed sorry to have learnt that you are in such a situation and we are wishing you a speedy recovery.

I think you can take the HIV idea off you mind now since it has been such a long time. There are other viruses and bacterias that can contribute to your symptoms. I was tested for HIV several times, HTLV, once and they were negative but i was tested positive for H. Pylori and Mycoplasma. Those are two bacterias found in my system.
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Users who thank Ustas for this post: Whoknows1 

replied August 28th, 2013
Experienced User
I totally agree with you! I also have tested for hiv numerous times in te last 6months and had 2 negative htlv tests. I haven't tested for bacteria. How do you test for those? Is it blood or stool sample?

Do you think that is causing all your symptoms? Have you felt better with treatment?
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replied August 28th, 2013
Extremely eHealthy
Ustas,

Perfectly written, thank you!

Best wishes.
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replied August 28th, 2013
Experienced User
Iam really sorry evryone but my mind always thinking about HIV even i cannot sleep right now it 2am in the morning now here in Malaysia. I still have to getup to work tomorrow with all those symptom. I dont know where to find the cure for all my family.
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replied August 28th, 2013
Extremely eHealthy
Hassan,

We were all once where you are - we all thought that we had HIV, we all were very sick. Yes, it was hard for me to accept my three month negative HIV antibody test, I even had the test done twice! But now, almost two years later, HIV is not even a remote possibility to me. Furthermore, other people have been living like this for five, ten years, and longer - please draw strength from that. You also need to make this transition, where you let go of HIV completely and consider what Ustas said about other diseases being possible. The world would be very simple if HIV was all there was, but unfortunately we live in a very complicated world when it comes to diseases. Please do not torture yourself any longer, there is an immense peace in knowing that you don't have HIV.

Best wishes.
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replied August 28th, 2013
Experienced User
Yes, i am feeling much better these days but not sure if the bacterias are cleared from my system. I would like to retest to ensure that they are eradicated. Even though the mycoplasma test is very expensive, i know my health is priority.
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replied September 4th, 2013
Experienced User
Mycoplasma is phenomia related and phenomia is a late sign for HIV virus.
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replied August 28th, 2013
Experienced User
Hey whats up guys...checking back in. I have made no progress. Still having major issues. Still thinking of killing myself daily. I have developed some additional muscle twitching now along with everything else. My tests continue to be negative. I'm still in the process of testing for multiple things but I can say that HTLV is DEFINITELY possible in my case and I believe is probable. All of my symptoms come back to it. I just haven't tested positive for it so I won't say 100% thats what it is. Sometimes I feel better but recently I've had a constant headache and feeling like crap...I will keep everyone posted and I hope you all are doing better. Tony, Scared, Depressed, DW, Ustas, WhoKnows and everyone else please keep the updates coming.
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replied August 29th, 2013
Experienced User
Goose,
Keep us updated also.
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replied August 29th, 2013
Extremely eHealthy
Goose,

Thank you for your words - clearly we are all in the same boat and this is the start of a huge epidemic.

Best wishes.
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replied September 1st, 2013
Experienced User
So I started having weird breathing problems and sore chest , lasted for 3 weeks, got tested for heart issues. Good news didn't find anything.

Then I have had about 3 weeks of normal, well mostly normal. But then had a few glasses of wine and bam, back to the drawing board.

Anyway, this is a virus, just not hiv, based on my specific issues ... I still think this is a coxsackie virus. Just hope it doesn't damage my heart too much.

Back to the dr next week, for a cbc. avoiding alcohol.
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replied September 1st, 2013
Extremely eHealthy
WS,

I had the same chest problem in the beginning, like someone hit me in the chest with a baseball bat!

Best wishes.
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replied September 2nd, 2013
Experienced User
New HIV strain
Believe me all our symptoms is related to HIV. And nothing in this world has similar symptoms like this. We all just miss the HIV antibody test. We need people who senior in this case. This is new HIV strain believe me.
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replied September 2nd, 2013
Extremely eHealthy
Hassan,

Read about HTLV - it is in the same family of retroviruses as HIV, and causes symptoms similar to ours, including back & leg problems. This is not HIV.

Best wishes.
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replied September 2nd, 2013
Experienced User
None of us seem to be getting any better
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replied September 2nd, 2013
Extremely eHealthy
WK,

That's true.

Best wishes.
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replied September 3rd, 2013
Experienced User
THIS IS HIV
Before i got this virus i already have a sign that i will caught by HIV. Before i fly to Bangkok i watched a movie about HIV. Than a lot of sign and thing happen when iam alone in Bangkok. I travel there a lone for 9 days. Before the sex happen i cannot sleep for 3 days i know something bad might happen near feature. Than i go to massage parlor than the sex thing happen i do oral on her unprotected and protected penetration with condom but i don't know whether the condom broke or not. then the week after i get red eye and loose stools. Than ARS after 3 weeks with all the flue hot leg and red rashes. Than after a week all go away accept the dry mouth, eye floters, stomach growling and loose stools until now.

Every where i go and everything i do will lead and show me the sign to HIV. We all just have to wait for AIDS. We are the unfortunate people who catch the new late and silent HIV virus.

We cannot get any medication. Even my baby still have lassion under his eye for a month and doctor just said it is enzima. I google the HIV lassion and it similar to my baby. This make my strong belive that we might have a late HIV virus.

No antibody can detect us until we get AIDS. Belive me.
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replied September 3rd, 2013
Extremely eHealthy
Hassan,

HIV is easy to detect because:

1. It multiplies into the millions of copies, eliciting a huge & measurable antibody response.

2. It destroys T-cells on a large scale, which again is easily measurable.

On the other hand, HTLV does not reproduce into the millions of copies, it can infect lower than 1 in 10,000 cells, and because of its low occurrence, it also has a low or undetectable antibody response. Furthermore, HTLV does not cause a decrease in T-cells, it actually causes an overproduction of them, which can lead to T-cell cancer.

So how do we go about diagnosing HTLV infection? As the old rule goes, symptoms don't justify a diagnosis, even though we have most (if not all) of the symptoms of HTLV. A flower cell blood smear test should show some flower cells, which are abnormal and caused by HTLV infection. We can test for proteins of the virus, such as p24 (which is shared with HIV), tax, p21e, gp46, etc.

Even if we found a conclusive test for HTLV that showed that all of us were infected, then what? Doctors refuse to treat patients with HTLV, adopting a "watch until death" approach. That means that even with a positive HTLV diagnosis, we will still be ignored by the medical industry. So what's the worse hell - not being able to prove that you are infected with HTLV, or being able to prove that you have HTLV, but still cannot receive life saving treatment? In either case, the medical industry is knowingly and willfully screwing us. They know that this disease has been around for 20,000 years and they know that people are suffering and dying of it. So why the cover up? I don't know - maybe the medical industry thought that ignoring HTLV would be a freebie, that the disease would "burn itself out" as was wished with HIV, i.e. once everyone with the disease dies, the disease is gone forever. However we are living proof that the disease is not going away, and certainly people like Derrick & the lady from Trinidad who got infected & paralyzed by HTLV from working on floors are even scarier examples, because they did not get HTLV from sex like we did, HTLV is in the environment, probably being vectored by mice. Hassan, you are not the first person to be infected via oral sex, I've infected other people that way, and rabbits in test labs are also routinely infected that way - so much for the "oral doesn't transmit the virus efficiently" nonsense. But imagine if you were one of these monogamous people who got it from floors / mice?

What can we do at this point in the epidemic? We desperately need a doctor who is willing to accept that the group on TheBody site who died back in 2004 is real and demonstrates the deadly potential of this virus, a doctor who is willing to prescribe Tenofovir (TDF) now, and its successor (TAF) when it becomes available. A doctor who is willing to give us 11 months of Azacytidine to eradicate the virus from our bodies. Whether the doctor is a genius, or gay, or a total quack doesn't matter. The damage that this virus is doing to our bodies is going to result in our deaths, so we need to do everything that we can to slow the virus down.

Best wishes.
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replied September 3rd, 2013
Experienced User
Hassan, I would like to discuss this with you. I will be one of those that tested negatively but I will have AIDS. We will be the unfortunate ones that get a new strain and then they will start testing for it.

It will at least be good to discuss with you because I feel so alone. It's a terrible thing to know you are dying, know that what you have is treatable but no way to prove it to a doctor. I feel like robbing a drug store so I can start treating myself with HAART

God bless you Hassan
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replied September 3rd, 2013
Extremely eHealthy
TRW,

HAART doesn't work for HTLV, otherwise we'd all be taking it. Of all the HIV drugs, only AZT & TDF (Tenofovir) work against HTLV, with AZT not as effective.

Best wishes.
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replied September 3rd, 2013
Experienced User
Hassan. Doctors say our symptoms can be from so many different things and I tell them you have to look at all the symptoms that are happening at the same time. When you do that it is obvious that it is HIV. If all I had was blurred vision that wouldn't mean HIV. If all I had was difficulty thinking clearly, that wouldn't mean HIV. Same with severely receding gums... and the many other symptoms. BUT when you put them all together, this is a different story. Is it possible an intelligent doctor wouldn't be able to realize this? If you tested positively they would say the symptoms pointed to HIV but if you test negatively, they say those symptoms could mean many things! This will be a horrible for us, again knowing we have it but not being able to prove it - just horrible!
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replied September 3rd, 2013
Experienced User
Guys, there is ways to prove HIV, even if the antibody test would be coming back false negative which i doubt completely.
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replied September 4th, 2013
Experienced User
How can HIV be proven without a positive ELISA?
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replied September 4th, 2013
Extremely eHealthy
HIV can be proven:

1. Antibody test.
2. PCR test.
3. T-cell counts.

Because HTLV attacks differently, it cannot be as easily proven.

Best wishes.
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replied September 4th, 2013
Experienced User
But they have few cases that people that miss this:

1. Antibody test.
2. PCR test.
3. T-cell counts.

We can google it and it is real and we might be one of those the unfortunate one.

I believe my instinct this is HIV believe me everybody. This is new strain of HIV and new epidemic of retrovirus. We are not the first batch there a lot of story telling about this late HIV infections but the doctors just ignore it because the just follow the standard procedure to detect HIV virus. Doctor cannot said that we 100% HIV FREE infect there no Doctor in the world that we are HIV FREE.

I already spread this Virus to my love ones because i just believe that nothing happen to me. because the psychiatry Dr make me believe that i Hypochondriacs and all the peels lexapro deazepamn and stilnox make me stable and think iam ok for a while.

But its already happen my wife have it and also my baby. Until now we all still suffer from loose stool, growling stomach, dry mouth and eye flooters but Dr. cannot find anything about it they just said Gastric or we take lack of water that why your mouth dry. 5 years i suffer from all of it whenever i wake up every morning. No Dr find anything i just find myself its all related to HIV but when do the test it will be negative. I just miss the test but the virus is in our body but cannot reveal it.

I just want to donate my blood every month and spread this virus to everyone so the Doctor and Researcher will do something serious about this undetectable HIV strain. Now they dont give a damn to it the just ignore my family.
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replied September 4th, 2013
Extremely eHealthy
Hassan,

I sympathize with your situation, since I'm living it myself for almost two years.

Same story as you, told that I should see a psychiatrist, everything's in my head, etc.

Then I gave this to other people, 51 to be exact.

You're absolutely right, doctors don't give a crap about us because they figure that we are in small numbers and will die off, but when they realize that there are millions of us, they won't be calling us crazy anymore. Sad that so many people have suffered and died from this already, and that so many more will suffer and die from this.

If they can ignore 25 million people with this, at what number will they stop ignoring us? 50 million? 100 million? It's funny in an insane way.

Best wishes.
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