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Certain HIV positive, but negative tests (Page 96)

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September 17th, 2013
Experienced User
I think soc3r the one who started this forum already commit a suicide.
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replied September 17th, 2013
Experienced User
I remember that post.. A bunch of friends slept with the same girl, and they started getting non hodgkins t-cell lymphoma... Wish we could find out if they all ended up getting it... I read 2 different articles-- one said 1 in 1500 people with htlv 1 get leukemia.. And the other said 1 in 20 or 25 get it... Wonder what the real number is?? As far as happy go lucky,, no not really, but not gonna let this "condition" steal my whole life...
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replied September 17th, 2013
Extremely eHealthy
DFrank,

I appreciate you being stable about this, since the opposite of that would be to completely wig out and talk about killing people and yourself - that's not productive and does nothing to advance our cause, but sets our cause backwards. I'm in the middle of the road, I'm upset about this but not enough to do something violent, but certainly I'm motivated to seek treatment for this, since I don't want to die / have this condition steal (the rest of) my whole life. It would be different if we knew that we'd live a reasonably long life but would just be miserably sick every day. Suspecting that people are dropping dead from this (Doctor Bob, Alberto, etc) motivates me to look for a treatment / cure.

Doctor Bob didn't have more than a few hours notice - he was fine, then got some lower back pains, then went to the hospital, then died within two hours from sepsis, a common death for (native) people with HTLV. If it can happen to him, a successful HIV doctor, it can happen to any of us.

Best wishes.
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replied September 17th, 2013
Experienced User
I've said this many of times... But if it is so contagious how come no one else this girl has been with is sick and just me? She is not even a sex worker but has had bfs after me!!
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replied September 17th, 2013
Experienced User
I know man...the girl that gave me this is showing NO SYMPTOMS at all. Its unreal.
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replied September 18th, 2013
Extremely eHealthy
WK,

Scared's friend was with the same girl that made him sick and his friend is not sick. Not everyone who is exposed gets infected, and not everyone who gets infected has symptoms, that's just how viruses work.

Best wishes.
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replied September 17th, 2013
Experienced User
I dont understand tony Dr.Bob is HIV positif but died with HTLV. So we have HTLV but dying with HIV?? That means HIV and HTLV is the same virus?? People who have positif antibody test have HIV and people who negative with antibody test have HTLV and both virus lead to death.
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replied September 17th, 2013
Experienced User
I dont understand tony Dr.Bob is HIV positif but died with HTLV. So we have HTLV but dying with HIV?? That means HIV and HTLV is the same virus?? People who have positif antibody test have HIV and people who negative with antibody test have HTLV and both virus lead to death.
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replied September 17th, 2013
Experienced User
Whoknows1 if u want to know the girl is sick or not try to listen to here stomach growling it will always be there all the time. Than you can smell bad breath of her mouth and ask her to spid she will be lack of saliva and very dry. If she have all that u might be contracted with HIV.
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replied September 17th, 2013
Experienced User
Whoknows1 if u want to know the girl is sick or not try to listen to here stomach growling it will always be there all the time. Than you can smell bad breath of her mouth and ask her to spid she will be lack of saliva and very dry. If she have all that u might be contracted with HIV.
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replied September 17th, 2013
Experienced User
If any of you could find a doctor can treat us i will try to get to your place because there is no doctors really care about my sickness. They just ask me to seek the mental health doctor. I belive this is HIV and iam dying with AIDS right now.
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replied September 18th, 2013
Experienced User
The lady that gave me this,when you look at her without scrotiny you dont see the signs. but now ehn i think back she had so many sysmptoms but marsk it with makeup. her nails her hair and her lips. she also talks funny from the thrush and will never allow a kiss cause of the smell from her mouth. her skin was red and she had some pimple like stuff on her face. she wont drink alcohole and insisted that the lights be put off.

i just regreat this. my life is ruined.
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replied September 18th, 2013
Experienced User
I have a dr that is willing to treat this provided i get the drugs
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replied September 18th, 2013
Extremely eHealthy
JP,

Good point - when we say that "someone doesn't have symptoms" - what does that really mean? Did we examine them for irregular walking, thrush, nail infections, blotchy skin, etc? Of course not. And if the person was experiencing symptoms, would you be told anyway? Of course not. All we can worry about is ourselves and our loved ones, we can't keep obsessing over the people who gave this to us. They aren't worried about our well being, why should we be worried about theirs?

Best wishes.
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replied September 18th, 2013
Experienced User
A regular doctor probably won't help - he or she use standard protocols. We need a researcher.
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replied September 18th, 2013
Experienced User
Anyone else here from australia?
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replied September 18th, 2013
Experienced User
Iam from Malaysia and the only one here alone in this forum and my country. Iam near australia.
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replied September 18th, 2013
Experienced User
we need to do a count of people infectd and the country so that we can keep tabs on thedistribution of this disease or virus. am in Nigeria Africa
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replied September 18th, 2013
Extremely eHealthy
JP,

I agree on your count of infected people point - here's a guy who started a registry when he was infected with HTLV and thrown out of a doctor's office:

Richard R. Engnath
Twitter @RichardREngnath
Founded an NGO BioMedical Group in 2006, the HTLV/XMRV National Registry, working legislatively to Disclose/Explain HTLVs in print, and Report All Case(s).
Kingston, NY

He didn't have access to the internet until recently, thank God he finally can use technology to get his message out.

Best wishes.
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replied September 18th, 2013
Experienced User
Can i also get the medical supliment from you John peters i really need tp start HAART
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replied September 18th, 2013
Extremely eHealthy
Hassan,

You can't go taking every HIV drug just because you think that you have HIV - this is not going to help you! Of all the HIV drugs tested against HTLV, TDF is the most effective, however it has been associated with kidney toxicity. A newer version of the drug, called TAF, is in clinical trials and is being hailed as both more effective and less toxic - this is the only HIV drug that should be taken for HTLV. Other than TAF, the antimetabolite Azacytidine has been shown effective against both HTLV and HIV.

Best wishes.
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replied September 18th, 2013
Experienced User
So tony can you get the medication for us. I just want to see my baby have a normal life that all. Please help me to find the cure.
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replied September 18th, 2013
Extremely eHealthy
Hassan,

I've said this before, I will say it again - we are all in the same boat:

1. TAF should be effective against HTLV, but right now is only in clinical trials, so it's only available to doctors working with the manufacturer (Gilead).

2. Oral azacytidine should be effective against HTLV, but right now is only in clinical trials, so it's only available to doctors working with the manufacturer (Celgene).

So unless we find a doctor who has the connections to these manufacturers, we can't get medication for us. If the FDA approves either or both of these drugs, then access is more likely, but still requires a sympathetic doctor.

Bottom line - find a sympathetic doctor, that is the key to the whole problem, not the idiot doctors who threw me out of their offices, doctors who actually get it through their thick heads that we are truly sick and dying.

Best wishes.
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replied September 18th, 2013
Experienced User
Has anyone here tested positive for HTLV? drank? tony?
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replied September 18th, 2013
Experienced User
I don't think anyone has tested positive for htlv. I've also has 2 htlv tests. 1 at 4months and another at 6months
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replied September 18th, 2013
Extremely eHealthy
Goose,

None of us here has tested positive for HIV nor HTLV. However, we do realize that HTLV testing is not conclusive - we have an article on TheBody site from Sawodsky saying that some people take YEARS to test positive for HTLV, and I know that Alberto from Italy NEVER tested postive for HTLV via antibodies (only by PCR two years into his infection). Also the organ donation network will NOT accept negative antibody nor PCR testing for HTLV (even after an entire year has passed) as indication that HTLV infection hasn't occurred.

We don't have an accurate test for HTLV, which is why I was hoping the new test from Brazil (developed there because they are also coming up with people who aren't testing positive) would help us. Since we can't get that test, we are out on a limb.

As an alternative, the rat test from Israel showed that a patient negative for HTLV's blood caused HTLV antibodies when that blood was injected into a rat. Obviously this is the concrete way to prove HTLV, by using an animal's immune system to respond to our blood. This reminds me of the old days when rabbits were used to test for pregnancy, i.e. when the rabbit died the patient was positive for pregnancy. We need to find a doctor to perform this test for us so we can prove that we have HTLV and then move on to fighting for treatment. Sitting here and discussing this over & over is not going to get us anywhere.

Best wishes.
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replied September 19th, 2013
Experienced User
Hello Tony,

This is not HTLV as all indicators of HTLV is missing. well am getting better by the day and all my symptoms are resolving on their own just taking better care of my health and eating right.

I have accepted Jesus and asked that he forgives me my sin and all is getting better. the truth is that we are all bir to die
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replied September 19th, 2013
Extremely eHealthy
JP,

If a healthy diet and Jesus are resolving your symptoms, then congratulations and you don't need this forum anymore. The rest of us who are much sicker than you have important work to do.

Best wishes.
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replied September 19th, 2013
Experienced User
I'm gonna try and get a pcr in the next few months, but I have to fly to Oahu, another island, since I'm in Hawaii.. I also know a girl who works for the CDC... Met her when I got a HIV and hepatitis test.. She was very nice and understanding.. She told me to contact her anytime even if its just to talk.. I'm gonna call her and go see her , I'm gonna feel her out, and maybe show her the forum.. Had a bad morning, I was in a ton of pain for 4 hours..neuropathy(fibromyalgia) type pain.... Take care guys!!
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replied September 19th, 2013
Extremely eHealthy
DFrank,

What's to feel her out about? When I wanted a PCR test, I just went to the doctor & said 'give me a PCR test'. I'm in much pain today too.

Best wishes.
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replied September 19th, 2013
Experienced User
Take care dfrank hope u find the solution. I know it is not HTLV it will be HIV and the of my life o know since every of my sytomp is similar to. I want to try to find a doctor that could treat me with HAART medication.

All of this happen with sex penetration no oral sex can infected any one with it only HIV is spread this way. Belive me evryone in the forum this is HIV.
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replied September 19th, 2013
Experienced User
Take care dfrank hope u find the solution. I know it is not HTLV it will be HIV and the of my life o know since every of my sytomp is similar to. I want to try to find a doctor that could treat me with HAART medication.

All of this happen with sex penetration no oral sex can infected any one with it only HIV is spread this way. Belive me evryone in the forum this is HIV.
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replied September 19th, 2013
Experienced User
Thank you Hassan for your taking your time to post and contribute to this topic. However, it is very unlikely that this is HIV given the high quality and sensitivity of todays test. Furthermore different strains of hiv still look like each other, thus leading to accurate results on the tests.

Furthermore, HIV is not the end of the world. You act like you are a dead man with HIV. However medicine has come a long way since the introduction of somewhat decent HIV medicine and doctors and scientists are already running clinical trials for HIV vaccines. Most likely within 10 years it is possible to get completely rid of the HIV in the human body and wiping it out. So even if you have HIV, it is probably not that big of a deal.

All the best.
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replied September 19th, 2013
Extremely eHealthy
M,

You're absolutely right - this isn't HIV, and there's no possibility that this is HIV. We've all been tested, and we've all tested negative.

You're also right that HIV is not the end of the world - they have 30 drugs for HIV. Meanwhile, they have ZERO drugs for HTLV - funny, right? So while HIV people will be able to live normal lifetimes with medications, HTLV people will be dead. I remember Scared saying that he wishes that this were HIV, so we could be treated with the wonderful HIV drugs. Imagine that, wishing that you had HIV so that we could be treated? I dont know whether to laugh or cry.

Hassan - you're never going to stop saying this is HIV, I get that. You can't consider that there are other diseases out there besides HIV, I get that too. Try to accept that you're being very narrowed minded to think that out of DOZENS of diseases out there, this can only be HIV. So no matter how much time has passed, no matter how many tests you've taken, this has to be HIV? Especially considering the focus on HIV - look at how many doctors, people, organizations are completely focused on HIV. You're never going to test HIV positive, your CD4 count is never going to be below 200. However, I can guarantee that your CD4 count will go higher, because that's what HTLV does on its way to destroy your body. That's why you will never win this argument, because your CD4 count will never support your claim that this is HIV, but will support my claim that this is HTLV.

Best wishes.
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replied September 19th, 2013
Experienced User
Thanks msamsamsa i dont know who to pronounce your name and spell it huhu!! Anway thanks yes i have HIV and my family to but ours is undetectable one and this is one rare cases for the unfortunate family. Me my wife and baby are having HIV symptoms but three of use have done antibody test with all negative result. We go for HIV rapid antibody test for HIV 1 and 2. Elisa test HIV 1&2 ab + ag p24 screen non reactive. Viraload unditected.

That how power full the new HIV straint that become doorman in all infected body can be ditected and cure. Because all the unditected test Doctor cannot give any HIV treatment to me Doctor also refius to do a CD4 count for us. I know my CD4 is below 200 now.

Iam filling sick with this world of fools. People who also have sex with mutplie partner almost everyday and have un protected sex never get this sickness. But i never cheat my gf or my wife get this sickness because of my one mistake to see the sex massager
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replied September 19th, 2013
Extremely eHealthy
Hassan,

I agree that tons of people are having sex with everyone and never get sick. Like you I was doing my best to be careful. The people that I infected have sex with everyone, so that means soon everyone will have this disease. Then what? Will doctors still claim that everyone who is sick is mentally insane? It's going to be really funny when the numbers are huge, i.e. you can tell a few people that they're mentally insane but you can't tell everyone that they're mentally insane. And it's not just middle & lower income with this disease, it's wealthy people as well. I've noticed that doctors won't ignore wealthy people who are sick, so when the disease spreads to enough wealthy people, then the medical industry will go public about this disease and start searching for a cure. In the meantime, the rest of us will continue to suffer.

Best wishes.
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replied September 19th, 2013
Experienced User
Tony,
Does the disease your talking about attack the brain? I'm suffering all kinds of neurological problems including a slowly progressing dementia. HIV negative but I know I have something that was sexually transmitted.
Thanks
Ken
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replied September 19th, 2013
Extremely eHealthy
Nervous System Disease: A New Outlet for an Old Drug - August 15, 2013.

The disease goes by the lengthy moniker of human T lymphotropic virus type I (HTLV-I)-associated myelopathy/tropical spastic paraparesis or 'HAM/TSP' for short. It's developed by a subset of people infected with the sexually-transmitted retrovirus HTLV-1, which infects up to 20 million people worldwide, mainly in equatorial regions. The result is a chronic, progressive demyelinating disease of the lower extremities, leading to muscle weakness, spasms, paraplegia and urinary problems.
Twenty-four HAM/TSP patients, who had had the disease for up to 50 years, took the drug -- prosultiamine -- daily as part of the open-label study. Twelve weeks later, most of the patients were more mobile -- they walked more quickly and were faster at going down stairs. Bladder capacity increased and bladder problems lessened, Tatsufumi Nakamura and colleagues report.
The condition is currently managed with drugs that alter the immune response, such as corticosteroids and interferon-alpha. But their efficacy is contested, and they manage symptoms rather than cure the disease. Prosultiamine, on the other hand, reduced levels of the HTLV-1 provirus in the patients' blood, a sign that the drug may be altering the underlying pathology rather than just managing symptoms.
Results from an earlier trial suggested the drug may prove useful therapeutically, but treatment lasted just 2 weeks. Here, the drug produced favourable results with no serious adverse side effects after 3 months of treatment.
Prosultiamine is already used in the clinic to treat a couple of brain disorders induced by vitamin B1 deficiency. Studies have shown it to be safe and stable. The data presented here suggest that prosultiamine could be a promising therapeutic tool for HAM/TSP, so the next step is larger, randomised, blinded clinical trials to assess its therapeutic value.
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