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Certain HIV positive, but negative tests (Page 82)

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June 26th, 2013
Experienced User
Study
Abstract
BACKGROUND: No gold standard exists for diagnosis of HTLV infection. The aim of thus study was to compare the accuracy of a combination of two sensitive ELISAs with Western blot (WB), a line immunoassay, and PCR for diagnosis of HTLV infection.

STUDY DESIGN AND METHODS: Nine hundred eighty-five specimens were tested for the presence of HTLV antibodies by HTLV-I and/or HTLV-II EIAs (Murex and Ortho), WB (Diagnostic Biotechnology), line immunoassay (INNO-LIA, Innogenetics), and/or presence of HTLV DNA by PCR. The results were compared with the probable HTLV infection status of each subject, as determined by detailed review of all available laboratory, clinical, and epidemiologic data.

RESULTS: The sensitivity for diagnosis of HTLV-I infection was high for all assays evaluated, but both PCR and WB had a lower sensitivity rate (approx., 80%) for confirmation of HTLV-II. INNO-LIA detected 94 percent of the HTLV-II-positive samples. However, Murex EIA in combination with Ortho EIA was 100-percent sensitive for the detection of both HTLV-I and HTLV-II antibodies. Furthermore, the number of samples giving indeterminate results in the ELISA combination was much lower as compared with WB (2.5% vs. 50%).

CONCLUSION: Based on these findings, a new, more sensitive and specific test strategy for HTLV diagnosis than the current algorithm, which includes WB, is proposed. Thereby, both the direct and indirect costs can be substantially reduced.
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replied June 27th, 2013
Experienced User
Def,

I stopped immediately. But as we all know this THING is so contagious. No Questions here.
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replied June 27th, 2013
Experienced User
JB
If u don't mind saying, did you get any of the more known STDs like chlamidya, ghonorea, herpes or hpv?
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replied June 27th, 2013
Experienced User
..
How do u know its contagious? Have u passed it on? Just through sexual contact? Reason y I ask is that the girl that gave it to me has slept with other guys who seem all fine
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replied June 27th, 2013
Extremely eHealthy
DW,

Sorry to disagree with you, but this disease is HIGHLY contagious:

1. HIV is via oral is considered 'low risk', yet I've infected women who performed oral on me (without ejaculating).

2. Someone on this forum became infected by having the tip of his penis come in contact with a tissue containing vaginal fluids used to remove the condom.

3. All of us here have gotten sick via ONE EXPOSURE, not the 'multiple exposures over years' theory put forward for HTLV transmission.

Altogether this means that this disease can get transmitted orally, with a broken condom, and only takes one exposure. JB's example of woman from Ghana (where HTLV is endemic) is a classic example of how none of us were warned about this disease before we did what we did. I got this from someone from the Carribean (where HTLV is also endemic). Why weren't we ever warned about this disease? So many of my friends went to Brazil on SEX vacations and never were warned about HTLV. This is so unbelievably wrong and unfair that we should have been exposed to HTLV without any warnings.

Best wishes.
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replied June 27th, 2013
Extremely eHealthy
DW,

Sorry to disagree with you, but this disease is HIGHLY contagious:

1. HIV is via oral is considered 'low risk', yet I've infected women who performed oral on me (without ejaculating).

2. Someone on this forum became infected by having the tip of his penis come in contact with a tissue containing vaginal fluids used to remove the condom.

3. All of us here have gotten sick via ONE EXPOSURE, not the 'multiple exposures over years' theory put forward for HTLV transmission.

Altogether this means that this disease can get transmitted orally, with a broken condom, and only takes one exposure. JB's example of woman from Ghana (where HTLV is endemic) is a classic example of how none of us were warned about this disease before we did what we did. I got this from someone from the Carribean (where HTLV is also endemic). Why weren't we ever warned about this disease? So many of my friends went to Brazil on SEX vacations and never were warned about HTLV. This is so unbelievably wrong and unfair that we should have been exposed to HTLV without any warnings.

Best wishes.
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replied June 27th, 2013
Experienced User
Tony, I know what u are saying but if this is what i caught how come I am the Only one that has caught it from this girl and all the other guys she has been with seem fine?
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replied June 27th, 2013
Experienced User
//
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replied June 27th, 2013
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replied June 27th, 2013
Extremely eHealthy
JB,

Thanks for agreeing that this thing is so very contagious. One time exposure is all it takes, and I've seen that even giving me oral sex without ejaculation transmits it.

WK,

After the doctor gave me the "you are fine, it's all in your head, see a psychiatrist" speech, I went back to my old ways. Everyone I had sex with got sick, and I am talking about on the order of several dozen women (and their husbands). And some of these people are screwing hundreds of other people, so doing the math, you can see that this is going to be a huge epidemic.

Everyone,

JB & WS & Scared have exchanged numbers with me, and we are actively looking for a hematologist who is willing to treat us with Azacytidine. Personally I have reached out to every one that I know in the medical field in my search, and asked them to keep their feelers out for a hematologist who will work with us. Keep in mind that there's a guy in Greece who was treated & cured with Azacytidine who doesnt have a care in the world - I want to be that guy. Also keep in mind that when the crap hits the fan, thousands of people present at the doctors with this, we want to be already treated and cured, since the medical system won't be able to handle the huge numbers of patients.

Best wishes.
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replied June 27th, 2013
Experienced User
I just don't understand why no one else this girl has slept with has any symptoms. Why only me? That's what makes me think it's something else... ?
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replied June 28th, 2013
Extremely eHealthy
WK,

My answer to you is that not every gets infected, and out of the people who get infected, not everyone gets sick. Scared's friend screwed around with the same girl that made Scared sick, and his friend is fine (Scared please verify that I remember that correctly). My sister had a baby with an HIV positive guy, and neither her nor the baby have HIV thank God (and she never took HIV medication neither).

Everyone,

I am going to re-port here the quote that was part of my previous post regarding the organ transplantation policy of deceased people:

Start of quote:
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/NAT test does not exclude the possibility of HTLV-1 infection.
End of quote.

Now, please focus on that last sentence - a negative PCR/NAT test does NOT exclude the possibility of a HTLV infection. The organ committee (optn dot transplant dot hrsa dot gov) has decide NOT to test donated organs for HTLV, and if people are sick after receiving a donated organ, the committee is saying that HTLV PCR / NAT testing is NOT conclusive. Also remember that it took Alberto from Italy TWO YEARS to test positive on the PCR test (and he NEVER tested positive on the antibody test).

All of you who said that this is bacteria, fungus, worms, etc are partially right, since HTLV infected people have suppressed immune systems, so they are prone to worms (Strongyloides stercoralis), fungus (Candida), and bacteria (H. Pylori).

Best wishes.
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replied June 28th, 2013
Experienced User
Tony

You always post interesting comments. And,

Fortunately you are right not everyone gets infected, also not everyone gets the initial symptoms.

I agree that HTLV testing needs improvements to say the least,
As we know HIV testing has more reliability, but even when it comes to HIV testing there is no HIV testing package insert that will exclude HIV infection either.

Example from a package insert:

ClearView COMPLETE HIV 1/2

LIMITATIONS OF THE PROCEDURE

11. A Nonreactive Test Result does not preclude the possibility of exposure to HIV or infection with HIV. An antibody response to recent exposure may take several months to reach detectable levels.



I think they write this so they will not be sued.
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replied June 28th, 2013
Experienced User
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replied June 29th, 2013
Experienced User
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replied June 29th, 2013
Experienced User
dear all,

WE have successfully requested Columbia University test blood for "china aids like disease patients".

They can also test a few samples for people who lives/ willing to travel to new york and draw their blood in july. Only a few samples are needed.

Whoever interested please pm me.
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replied June 29th, 2013
Extremely eHealthy
Hope,

Definitely I would be interested in being tested by Columbia University.

Msa,

Doctors are not taking us seriously, no matter how sick we are. They don't believe HTLV is a problem, so therefore we don't have any problems.

Best wishes.
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replied June 29th, 2013
Experienced User
Just to add in on the bad healthcare we receive. I went to the ENT dr she told me she would call me after she got the ultrasound results from the radiologist. It has been 4 weeks now and still no call lol. The ultrasound results are just screenshots, so its a matter of seconds.
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replied June 29th, 2013
Experienced User
how r u my old friends ??

hope all of you doing all okay

please let me know if any1 has diagnas with anythng ...hope no 1

m doing really well.. no symptoms left at all..but dd actually stop worrying ant dd stop searchng
would advse all of you plz stop searchng after 3 months tested negatve
god bless u my old frends
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replied June 29th, 2013
Extremely eHealthy
UK,

Glad to hear that you are doing really well, bur the rest of us are still sick. God bless you as well.

Best wishes.
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replied June 29th, 2013
Experienced User
Glad to hear one of us is feeling better. What exposure and synptoms did u have though?
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replied June 30th, 2013
Experienced User
Tonny
Pleaseplease try to stop searc n look for symptoms n stop being tested. Try for few months. Stay away from internet. Hope this will treat you. Plz try. I ve tried n did work out after 12 months

Whoknows

Read the posts druing early 2012 n u ll c the my expose n symptoms
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replied July 2nd, 2013
Experienced User
there are people who are really ill due to his ability dealing with stress.

However please do not confuse the rest as there are real fear-of-aids patients such as you, but our symptoms are real.

I have been dignosed with poly neuropathy, disseminated TB, EBV and mycoplasma infections.

If you do not suffer any symptoms, you may leave here and wish you all the best. Please handle your stress well next time.
Thanks
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replied July 2nd, 2013
Extremely eHealthy
UK,

Fortunately for you, you are not sick anymore. And I understand your point, that ignoring symptoms and going on with my life will make this illness go away - the doctors also suggested that to me, and believe me I tried it, but in the process I got dozens more people infected and realized that I am not getting any better.

Some days the pain is terrible, and I've experienced symptoms of Uveitis, Mycosis Fungiodes, and Sepsis. I was always healthy until my exposure on November 7, 2011. All of us on this forum know that this isn't HIV, but we also know that it is something else - this isn't stress related, nor psychological - NONE of us are crazy! I am convinced that this is HTLV, and the medical industry's refusal to inform, test, diagnose, and treat patients for HTLV only adds to my conviction that this is what we all have. Add to that actual people that actually have HTLV:

1. Derrick from California on the HTLV help face book page is a monogamous married man with three children who apparently contracted HTLV from replacing floors. Once a big strong man, now he can barely walk.

2. A monogamous married woman with children in Trinidad (who's afraid to give her name) apparently contracted HTLV cleaning floors as a maid. Now she's confined to a wheelchair.

3. Effie from Florida on the HTLV help face book page was told that her HTLV positive test results had nothing to do with her lymphoma diagnosis.

4. Alberto in Italy never tested positive on the HTLV antibody test, but finally tested positive on the PCR test TWO YEARS after being infected. Now 7 years later after being infected he has Mycosis Fungiodes (leukemia), and is probably dead. Also worth noting is that he gave the virus to his wife, who passed it on to their baby via breastfeeding.

So yes, I'd like to close my eyes, then wake up and have all of this pain & suffering & death be a bad dream, and live in a world where HTLV doesn't exist - but I don't have that option.

Talking to people like Scared, WS, Resperanza, and JB has shown me that other people are thinking like me, that this disease can be treated and maybe even cured. These guys are motivated and want to do something about this illness, not just sit at home waiting for death to come knocking at the door. And believe me, this thing can kill us soon, considering that Alberto has Mycosis Fungiodes after only 7 years of being infected. Recently, I had lesions on my nose & arm, and I was terrified.

The plan is to find a doctor that will prescribe Azacytidine - it's standardly given in a one week dosing, then no dosing for three weeks. This cycle was repeated for 8 months in the patient in Greece, who was then declared HTLV PCR negative. I would like to get 10 or 12 months of dosing, just to be sure that the HTLV has been eradicated from my body. Yes, finding a doctor who is willing to do this for us is a huge challenge, but it is our only hope of beating this disease.

Best wishes.
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replied July 1st, 2013
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replied July 1st, 2013
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replied July 1st, 2013
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Can't see last post
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