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Certain HIV positive, but negative tests (Page 31)

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June 23rd, 2012
Extremely eHealthy
Ustas,

Well said!

Best wishes / HTLVhelp
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replied June 24th, 2012
Experienced User
Hello Guys, this is Casper again,
first of all i want to appreciate "Tony" big efforts & work on finding out what we all suffering from, he is really a great help in this forum ( Thanks man ).
second thing , Darkguy , you are HIV negative for sure , you are faaaar beyond widow period to detect HIV infection.as the same situation for all of us ,
i will update my symptoms guys : since yesterday i have un-believable stomach \ abdominal pain , i have never ever gone through a thing like that, add to this that it comes with a great pain in my back ( LOWER & MIDDLE OF IT ) , also i start to develop Ulcers in my tongue ( the left bottom side , it is more like patches on the tongue it self,
i can't stand the pain in my stomach & back any more , it is really hard to live like that ,
BTW : the girl that i only contacted her ( sexually ) she is perfect , healthy , no problems at all by any how , all her tests are negative , she got tested many times for almost everything ( all results are negative )
BTW : i got tested for HIV twice ( 6 & 7 months ) after my first exposure , all negative also Sad
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replied June 24th, 2012
TonyDewitt,

Your points are so helpful. I strongly appreciate your insight towards gathering helpful information. Now am gathering dozens of info about it. But am wondering why HIV people don't want to talk about HTLV. I mean what are the main reasons for this? is it only to avoid medication shares from the government? And why gov'ts need to ignore it? Let us know if you have some more detail info. Plus do you know someone who is already diagnosed to HTLV? Thanks a lot Tony.

Ustas and casper,

Try to do other tests too. Let us try all things and I hope we can come out with one solution.

By the way, my doctors will do other tests for me by next week. These tests are blood control tests: VES, PCR, LDH, ellectroforesi proteica, ANA, ENA, Vitamin B12....

But I prefer to do other tests like HTLV. Let us keep in touch guys, God bless us!
Le
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replied June 24th, 2012
Experienced User
New drug could cure nearly any viral infection
Not sure if anyone has read this news on MIT.edu.
New drug could cure nearly any viral infection.
They seem to have tried this on 15 fifferent viruses.
Hopefully this is help us with all our problems irrespective of any viruses.
I hope they try testing HTLV for this with DRACO.
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replied June 24th, 2012
Extremely eHealthy
Casper / DarkGuy,

Thanks for the honorable mention - I received much criticism for mentioning HTLV on other sites, even when I first joined this site (a guy named Muhamad asked me to go to another site), so your words of appreciation bring huge relief and validation to me. I spent many days and nights of the past several months searching for answers, writing to doctors, labs, and researchers, including Dr. Joe Zunt, Dr. Louis Mansky, Dr. Ervin Shaw, Dr. Allred, etc.

DarkGuy, I shared your symptoms - my back is so bad that I can barely walk upright. To answer your question as to why HIV folks want to suppress any mention of HTLV (even when they are coinfected), they want HIV to be to *only* retrovirus, and the *only* incurable, life threatening disease, so yes, your point about "sharing" the attention is valid. I firmly believe that Dr. Bob died from HTLV (via sepsis), but even Dr. Bob himself would not allow people to mention or even test for HTLV - that's how deep the denial runs, that even a HIV+ doctor himself can't admit HTLV is a real problem, even when it causes his own death. Dr. HHH from MedHelp received an award for his work on STDs, but considers HTLV *not* to be an STD - this is commpletely insane.

I do know people with HTLV (through the WiseGeek site) and have paid with my own money to start the HTLVhelp site. HTLV is a real disease, and it deserves as much research, awareness, treatment, and cure as HIV. If we all lobby, sign the online petitions that I've created, and make everyone aware of HTLV, it can be cured in our lifetime, I have faith of that.

Best wishes / HTLVhelp
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replied June 24th, 2012
Experienced User
HTLV scientist
The level of ignorence for HTLV disease is too high compared to any other disease. No mention of HTLV exists and is denied as a serious disease with false quote of 95% asymptomatic.
12 Confrences past 24 years yet nothing productive has come from these confrences not even one antiviral drug exist till date.Symptom mgt is the only word in terms of treatment.30 years times a scientist will finish his carrier on reaserch. HTLV reaserch has entered its 3rd decade without any productive results. Looks like all HTLV scientist keep sleeping throughout their carrier like govt and health agencies.
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replied June 24th, 2012
Experienced User
Yes darkguy, all we need for u to do si to forget about HIV becaz it's not your problem man.

I'm waiting on my H. Pylori. Did the test yesterday my friend.

Tony, aviseme,casper, the doctor agian said, its all in my head. It's all about my anxiety.
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replied June 24th, 2012
Extremely eHealthy
AdviseMe,

I also wrote to Dr. Todd Rider about his DRACO therapy, since it's not clear if it works against HTLV. Since HIV & HTLV are retroviruses, if DRACO works against one, it should work against the other, but no research has been done on this yet. It would be GREAT if one therapy could cure both HIV & HTLV.

Best wishes / HTLVhelp
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replied June 25th, 2012
Tony,

Really wonderful explanation. I have read many things about HTLV and I found out that it is serious infection as like as HIV. And all symptoms that I have relates with it as well. Anyway we better to do something towards it. I will ask my doctors to do HTLV test for me. I don't know what will be their reaction for this. Sure, we can sign the petition. Where is the link?

Ustas/adviseme,

I got your idea. Guys let us create another forum that can enable us to discuss by chat as well. We have to work together.
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replied June 25th, 2012
Experienced User
HTLV living invisible
Recent publication on NIH

Abstract
INTRODUCTION: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients' needs and emotional experiences.

OBJECTIVE: To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes.

METHODS: A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil.

RESULTS AND DISCUSSION: The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections.

CONCLUSIONS: Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an "invisibility" of their complex demands and feel that their rights as citizens are ignored.
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replied June 28th, 2012
Extremely eHealthy
AdviseMe,

Excellent article, thank you, especially the focus on HTLV being an stigmatized secret, and it being perpetuated as a result of the lack of care and prevention, not to mention the invisibility of HTLV sufferers.

Thank you / HTLVhelp
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replied June 25th, 2012
Extremely eHealthy
DarkGuy,

I've already spent the money to create a forum on the HTLVhelp site. As for the petitions you asked about, they are on the SignOn site, just search for the keyword HTLV. We can't give explicit links here because they are automatically censored. If you still have problems finding all of this, send me a private message.

Best wishes / HTLVhelp
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replied June 25th, 2012
Experienced User
draco htlv
Tony, hope draco works for retrovirus.
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replied June 25th, 2012
Experienced User
Tony, hope draco works for retrovirus.
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replied June 25th, 2012
Extremely eHealthy
AdviseMe,

We all hope for the cure, including people living in wheelchairs, and people being told that they'll be dead in a few months from incurable leukemia. I have only 26 signatures on the largest petition, no new signatures in two weeks.

Best wishes / HTLVhelp
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replied June 25th, 2012
Extremely eHealthy
PS: I'm not allowed to post on the BetterMedicine site neither.
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replied June 25th, 2012
Experienced User
htlv neglected disease
There shoud be some way we get htlv sufferers together. I am sure people are reading this thread when they look for htlv. Please join us to fight against negligence of this disease and get cure.
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replied June 25th, 2012
Experienced User
There shoud be some way we get htlv sufferers together. I am sure people are reading this thread when they look for htlv. Please join us to fight against negligence of this disease and get cure.
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replied June 25th, 2012
Extremely eHealthy
AdviseMe,

The ways to promote HTLV progress are:

(1) Sign the online petitions - I've created at least three of them - and get everyone you know to sign them.

(2) Post in the forum on the HTLVhelp site.

Best wishes / HTLVhelp
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replied June 25th, 2012
Extremely eHealthy
AdviseMe,

The ways to promote HTLV progress are:

(1) Sign the online petitions - I've created at least three of them - and get everyone you know to sign them.

(2) Post in the forum on the HTLVhelp site.

Best wishes / HTLVhelp
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replied June 26th, 2012
Experienced User
Tony i have signed those petition and been commenting on on Helpsite.But i dont have many friends is US to sign this petition.
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