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Certain HIV positive, but negative tests (Page 81)

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June 24th, 2013
Experienced User
Ustas,

We have to become our own MDs. The real MDs probably don't give a sh*t regarding our conditions.

I will make these Azacitidine shots by myself if necessary. I have no choice.
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replied June 24th, 2013
Experienced User
Hi,

Check your inbox.

Thanks!
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replied June 24th, 2013
Experienced User
Jasonbourne,

Congratulations man I'm really happy for you. I hope this is all you ended up with and your all clear now. God bless you and take care of your self, as you can see one night of fun isn't worth the misery. Take care man and best of luck to you in the future. And don't be a stranger pop in once in a while and let us know how your doing.

Whoknows,

I wondered that to but my wife's are dark to that what's concerning me. Everywhere I read about it the cause is either a infection or cancer. I don't know man something's not right I know it and I'm scared. How are you these days?

Ustas,

I hope so man this I has totally ruined my life. I'm to sick and tired and discusted with these drs. I feel like they could care less about us. I'm so angry inside but I try to keep it all together for my wife and kids but its tough, it's a battle everyday for me. I literally go to work everyday with a painted on smile pretending nothing's wrong but it's in my mind constantly. I just pray it's nothing real serious but the fact is these symptoms aren't going away and that's why I know this cant be good. I hope you find out what's going on with you one day so you can move on with your life. God bless you friend.
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replied June 25th, 2013
Experienced User
..
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replied June 25th, 2013
Experienced User
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Scared.

I have sore red throat, headaches, dirty tongue and red blotchy palms.. I also get dizzy. I'm still going to work but struggling. My gf seems to be ok at the moment and not complaining of symptoms..

Hope it's not htlv!!
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replied June 25th, 2013
Experienced User
:::
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replied June 25th, 2013
Experienced User
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replied June 25th, 2013
Experienced User
Whoknows,

I have all those exact same symptoms as well. I too hope it's not HTLV either. I've donated blood already about 6 months ago so I would think its not because they screen for that when you donate. I don't know what to make of all this.
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replied June 25th, 2013
Experienced User
..
Scared.. I was tested specifically for htlv a couple months ago which was about 4-5 months after exposure. Was negative. I have never donated blood.. Are you going to test again?
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replied June 25th, 2013
Experienced User
Hey guys,

Is anyone experiencing hair loss on their lower legs like around their calves. I don't know if its related to the exposure or not.
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replied June 25th, 2013
Experienced User
///
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replied June 25th, 2013
Extremely eHealthy
I agree!
Amen Ustas,

Not only was my last doctor visit a waste of money, but also I was treated like an insane idiot.

Best wishes.
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replied June 26th, 2013
Experienced User
[Human T-lymphotropic virus I/II detection in Chilean patients from Sexually Transmitted Diseases clinics].

Authors
Sanhueza D, Ramrez E, Navarrete N, Santander E, Garmendia ML, Martnez MJ.
Journal
Rev Med Chil. 2012 Oct;140(10):1239-44. doi: 10.1590/S0034-98872012001000001. Article in Spanish.

Affiliation
Programa de Virologa, Instituto de Ciencias Biomdicas, Facultad de Medicina, Universidad de Chile, Chile.

Abstract
BACKGROUND: The human T-lymphotropic virus I (HTLV-I) causes spastic para-paresis and adult T-cell leukemia/lymphoma. It can be sexually transmitted and is highly prevalent in Central and South America.

AIM: To study HTLV-I/IIprevalence in serum samples obtained from two Sexually Transmitted Diseases (STD) clinics.

MATERIAL AND METHODS: Two hundred serum samples were randomly chosen from two reference STD centers of Santiago. The presence of specific HTLV I/II antibodies was detected by indirect immunofluorescence.

RESULTS: The analyzed samples came from participants aged 14 to 70 years. Forty nine percent were women and 76% were heterosexual. Only one of the 200 samples was positive (0.5%) and it came from a 70 year-old woman, housewife, with a stable single partner, a history of recurrent genital ulcers, VDRL (-) and positive serology for herpes simplex virus.

CONCLUSIONS: The prevalence of HTLV-I found in this group is similar to that demonstrated in other populations in Chile, except for aboriginal populations, and similar to international STD studies. Our data is consistent with the low transmissibility by sexual contact.
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replied June 26th, 2013
Experienced User
..
Nice case study... It makes it sound so rare....
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replied June 26th, 2013
Extremely eHealthy
Denial is not just a river in Egypt
Yes, it does make it sound so rare, but the reality is that 25 million people have the virus. If the HTLV antibody test was conclusive, Brazil wouldn't need to develop a NEW test for HTLV. That would be like someone developing a new HIV test - no need to do that if the current test is accurate enough, right? Certainly the medical industry isn't going to come out & say "we don't have an conclusive test for this virus", that would require a level of honesty & integrity that they just don't have. Even at my last doctor's visit, he had the nerve to look me in the face and say "the serology test for HTLV is very good", with an amazing sense of complete denial on his face. How would he know that? Certainly he hasn't participated in any research or studies on HTLV, he hasn't read any articles on doctors in South America struggling to diagnose people who have ALL OF THE SYMPTOMS of HTLV without testing positive (yes, look that up as well).

Add to that the complete lack of mention about HTLV - before we got sick, did any of you know that HTLV was endemic in the Carribean, Central & South America, and Japan? I doubt it. Would I (or any of you) have changed our behavior if we knew about this disease? Certainly I would have. So again, the secrecy surrounding this disease is the reason that the disease is spreading like wildfire. Ever wonder why HTLV is NOT part of the standard STD screening? That means that someone who has antibodies to HTLV can walk into a doctor's office, say that they have been sick since a sexual exposure, get tested for HIV, Hepatitis, Syph, Gono, etc and STILL not receive a HTLV test, get the pat on the back & sent home with a clean bill of health? Insane!

The doctors also refused to believe that a lady who died from Mycosis Fungoides got HTLV from her husband, who was a IV drug user. So now she's dead, for simply having sex with her husband, and that's swept under the rug - her death, her disease, her sexual transmission of that cancer. Why isn't there a full blown investigation into why this woman died? Why isn't this being considered the sign of the next big epidemic?

Also the HTLV-positive woman on the HTLV help face book page was told by her doctors that there's NO WAY that her Lymphoma was caused by HTLV - WHAT??? Do you know what kind of idiot you have to be to deny that any virus causes cancer?

How the HELL can doctors tell people that HTLV does not exist, cause SERIOUS cancers, paralysis and death? And these are the same people that you want to TRUST to tell you that we are okay? Like JB said, we have to be our own doctors. I want the Azacytidine, I want to be cured, I want to stop living in horrible pain, I want to stop wasting away. I'm going to keep looking for a sympathetic hematologist, specifically focusing on gay ones, with the hope that they're more sympathetic to the cause since so many gay people got killed by HIV in the 80's while the medical industry did nothing.

Best wishes.

PS:

On October 23, 2009, the OPTN/UNOS Executive Committee eliminated the requirement for pre-transplant deceased donor HTLV-1/2 testing, effective November 23, 2009. The basis for this decision included considerable organ wastage due to false positive results using screening tests, the very low prevalence of HTLV-1 in the United States.

Given that universal donor HTLV-1 screening is no longer required for potential deceased organ donors, transplant centers should remain vigilant for clinical findings consistent with HTLV-1 associated disease. These findings would primarily include T-cell leukemia/lymphoma or otherwise unexplained neurological symptoms such as myelopathy. Testing in this circumstance should include both serological tests (with confirmatory testing) and nucleic acid based testing (see below for specific tests).

The transplant team for recipients of confirmed HTLV-1 positive organs or vessels should consider working with local ID experts to develop a plan for evaluating recipients of organs from a donor who was confirmed to be infected with HTLV-1. As serological responses to infection may be attenuated by immunosuppression, nucleic acid based testing may be helpful in screening recipients. Nucleic acid based testing, however, may not be available in all locations. While there are currently no accepted guidelines for the evaluation and management of recipients of organs from HTLV-1 infected donors, if screening is considered at the local center,
it is recommended that the recipient have (see specific tests below):
* HTLV-1/2 serology drawn as soon after donor infection is confirmed as a baseline in the recipient (if pre-transplant donor serum is available, this would be the preferred specimen) if they have not previously been screened for HTLV-1/2 infection (some centers do routinely perform HTLV-1/2 screening on all recipients).
* Consider HTLV-1 specific PCR and serology at 1, 3, 12 months post-transplant (if available).

As immunosuppression may reduce the immunological response to HTLV-1 infection, PCR testing (if available) should be performed on whole blood (not serum) as part of any monitoring strategy for recipients of seropositive organs. HTLV-1 may have low levels of viremia, and a negative PCR test does not exclude the possibility of HTLV-1 infection.
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replied June 26th, 2013
Experienced User
Guys,

Regarding wasting. To prevent wasting I'm on so called paleo diet (high protein diet), I take overthecounter Tribulus tablets / Whey protein (increase testosterone production in the body, get muscles, lose fat) and working out 5 days a week in gym (despite pain in my knees). This is the basics. Hope this protocol will help somebody.
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replied June 26th, 2013
Experienced User
Jason Bourne
Would you mind sharing your risk exposure concern with us?
Did you have unprotected oral?
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replied June 26th, 2013
Experienced User
Def,

I had protected vaginal sex with a black woman. Unfortunately for me condom broke in the middle of the action. She was from Ghana as far as I remember, where by the way, htlv is common.
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replied July 2nd, 2013
Hi Jason:

do you mind sharing what was the treatment/defumegation you went through to erradicate your symptoms ? thx
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replied June 26th, 2013
Experienced User
..
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replied June 26th, 2013
Experienced User
JB,
Thanks i wanted to understand where you were coming from.
I'm sorry to hear your condom broke.
I know it doesn't matter what i think but i will say it anyways.
I would only consider your situation risky if for sure your condom broke completely, and if you kept having sex while the condom broke, but if you stopped immidiately i would consider the risk to be non existing.
Just what i think.
Thanks again for sharing.
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