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Certain HIV positive, but negative tests (Page 74)

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May 22nd, 2013
Experienced User
Hello all, just wanted to say I am still here and reading everything from everyone.

I charting my activity and symptoms daily. If 10 is normal I have been running between 7 and 9 for a little while. About 6 to 8 weeks after I was a 3 for several weeks.

I am having difficulty breathing, stomach issues and head aches mostly now.

Just read about the respiratory virus in Alabama. I am concerned it takes cluster deaths for any attention.

One thing - try to get tested for vitamin deficiency, appears this might deplete some key ones
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replied May 27th, 2013
Extremely eHealthy
WS,

I thought you were doing better & were going to forget the whole thing? Your symptoms sound serious & certainly shouldn't be ignored. Do you think you can get us the new test kits from Brazil from that company called Gene ID?

Regarding vitamins, I take supplements to combat HTLV:

1. Vitamin C - 1,000 mg
2. Multivitamin.
3. Vitamin E - 400 IU.
4. Chinese Skullcap (liver wellness) 400mg - HTLV RT inhibitor.
5. Eclipta Alba (Wedelolactone suppressed HTLV)
6. Iron 26mg
7. Lysine (antiviral) 500mg.
8. Garlic tablet.

Best wishes.
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replied May 22nd, 2013
Experienced User
I don't know if anybody has been tested for [human herpes virus 8, HHV8]also known as (karposi sarcoma virus). It seem it is most likely transmitted through saliva, still not too infectious though, it does cause acute symptoms, luckily it is harmless in the majority of people.
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replied May 25th, 2013
Extremely eHealthy
DW,

I had this a few years ago, it is NOT a pleasant illness to have.

Best wishes.
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replied May 25th, 2013
Experienced User
Tony
Did you get tested for hhv8?
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replied May 27th, 2013
Extremely eHealthy
No, doctors won't test you for certain things (HHV8, HHV6, JC, Parvo, HTLV, EBV). I say this because when I got EBV it took TEN DOCTORS before I had a diagnosis. Think about how stupid that is, that it took ten doctors to diagnose EBV. If our lives depend on these idiots, we are doomed.

Best wishes.
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replied May 22nd, 2013
Experienced User
Does anyone have sore front and bottom teeth? It like a burning sensation. Not sore but uncomfortable.

For hose who have red and white blotchy palms... Mine look normal when my hands are elevated but when they are beside me legs is when I notice they go blotchy. Is this the same for you? Or does mine sound like circulation problems?
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replied May 27th, 2013
Extremely eHealthy
WK,

Drifting teeth for me - I had my dentist X-ray my teeth and he said that all of the roots have shrunk, causing the teeth to drift. This disease is absolutely horrible, and don't let anyone tell you that it's not.

Best wishes.
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replied May 23rd, 2013
Experienced User
Biology and treatment of HTLV-1 associated T-cell lymphomas
Adult T-cell leukemia-lymphoma (ATL) is a distinct peripheral T-lymphocytic malignancy associated with human T-cell lymphotropic virus type I (HTLV-1) endemics in several regions of the world including the south-west Japan. The three major routes of HTLV-1 transmission are mother-to-child infections via breast milk, sexual intercourse, and blood transfusions. A HTLV-1 infection early in life, presumably from breast feeding, is crucial to the development of ATL. The estimated cumulative risk of developing ATL among HTLV-1-positive individuals is about 3% after transmission from the mother. The diversity in clinical features and prognosis of patients with this disease has led to its subtype-classification into acute, lymphoma, chronic, and smoldering types defined by organ involvement, lactate dehydrogenase (LDH) and calcium values. For the acute, lymphoma and unfavorable chronic subtypes (aggressive ATL), and the favorable chronic and smoldering subtypes (indolent ATL), intensive chemotherapy followed by allogeneic stem cell transplantation and watchful waiting until disease progression has been recommended, respectively, in Japan. A retrospective analysis suggested that the combination of interferon alpha and zidovudine was promising for the treatment of ATL, especially for leukemic subtypes. There are several new trials for ATL, including a defucosylated humanized anti-CC chemokine receptor 4 monoclonal antibody, histone deacetylase inhibitors, a purine nucleoside phosphorylase inhibitor, a proteasome inhibitor and lenalidomide.
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replied May 23rd, 2013
Experienced User
Hey guys,

There's not a doubt in my mind these women infected us with something. BUT NONE OF US have tested positive for anything yet. I'm not ruling HTLV out its still a possibility but what are the odds of us all testing negative for it but still have it? Many of us have been tested for it but come up negative. The only thing I've tested positive for was H Pylori, and my wife has HSV1 and HSV2 which I'm pretty sure I caught from this woman and gave to her. All I'm saying is this guys MAYBE JUST MAYBE we've had a underlying health problem going on for some time that we've been ignoring and blaming it all on the exposure. Like I said I'm not ruling out HTLV or any other retrovirus or disease out, but come on guys NONE of us have tested positive for anything yet other than a couple of us for H Pylori.

EVERYONE,

All I'm saying is this we know something's not right or we would not be on this forum. But you all need to do research on each one of your symptoms and see what you come up with and talk to your drs. about them. For some reason I just think there are many of us on here that have had something going on and have been ignoring it, and blaming it all on the exposure.

I really wish everyone here the best, and hope we find out what the hells going soon. Good Luck and god bless all of you.
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replied May 23rd, 2013
Experienced User
S49
I thought from the beginning you had unprotected vaginal sex but later came to find out that you only gave and received oral but used a condom for penetration, it sounds like the riskiest part of your encounter was you giving oral to her, but even that i would think carries an extremely low risk if any at all. However my situation is much diferent and the risk are incomparable. I would feel sure i didn't catch a retrovirus if i were you.
I wish you well also.
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replied May 23rd, 2013
Experienced User
I totally agree with in this post. These women could have given us something that we won't ever discover. One doctor did tell me that a person can get a virus and even after the virus has been resolved the body still continues to have issues because of the immune system response that could last for months and months. Until we all test positive for something common among us, we'll have to keep chasing it down. I will keep posting everything here regarding my situation and hopefully one of us can figure out something!
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replied May 27th, 2013
Extremely eHealthy
Goose,

What you described is referred to as ImmunoPathology - what damage occurs (and continues) after an infection is cleared. Myself and a few other people here are absolutely convinced that this is a retrovirus, either HTLV or very closely related. The muscle wasting, back & leg pain all too closely mimic HTLV for it not to be HTLV. Our best bet for testing would be the new HTLV tests being developed in Brazil. Our best bet for treatment would be an antimetabolite, such as Azacytidine (Doctor Meletis) or Methotrexate (Doctor Barasa).

Best wishes.
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replied May 23rd, 2013
Experienced User
Whoknows,

My palms do the exact same thing which makes me think Hepatitis. I've read it's something to do with the liver. My wife's do it as well.
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replied May 23rd, 2013
Experienced User
I too think about Hep B. A lot of the symptoms we have could be a result of the a problem impacting the liver. and Hep B does that. This is nuts!
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replied May 28th, 2013
what do ur palms do?
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replied May 23rd, 2013
Experienced User
The liver does not have nerves that translate pain that is why people have Cirrhosis of the liver and not even know about it, same thing with the brain.
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replied May 27th, 2013
Extremely eHealthy
The liver is a vital organ that plays many important roles in the body. It is the largest gland in the human body and is responsible for several critical functions necessary for survival. The liver is triangular shaped, reddish brown in color, and weighs approximately 1 kilograms. This large internal organ is located at the right upper quadrant of the abdomen, just below the right diaphragm. It lies to the right of the stomach, overlying the gallbladder.

The liver plays many vital roles to maintain health and prevent disease, such as:
Producing amino acids (building blocks of protein)
Performs various roles in carbohydrate metabolism (synthesis, breakdown, and storage)
Protein metabolism
Lipid (fat) metabolism
Fetal red blood cell production
Production of proteins for blood clotting
Production and secretion of bile, which emulsifies proteins
Detoxification of toxic substances like drugs
Hormone production and breakdown
What is Liver Pain?

The liver is covered by a thick capsule where many pain receptors lie. Pressure against this capsule is felt as liver pain, and this can occur when the liver is swollen or enlarged, when there is acute inflammation in the organ or any injury that causes an increase in pressure on the liver capsule. Liver pain is often felt in the upper right side of the abdomen under the lower ribs and may be characterized as a vague or dull pain.
Liver Pain Symptoms

It is often difficult to identify liver pain because it may occur as a dull aching pain that is experienced in the abdomen, often times in the upper right side. However, sometimes the character and location of the pain may vary, and the accompanying symptoms may be different from one person to another. Variations in liver pain include:
Dull aching or vague pain in the right upper quadrant of the abdomen
Sharp , stabbing pain
Abdominal pain accompanied by shoulder pain and/or back pain
Right-sided abdominal pain that increases when inhaling or coughing
Pain accompanied by difficulty in breathing

It may be difficult to identify or distinguish liver from other types of abdominal pain because it is often subtle and insidious. Many people ignore its initial symptoms until the pain is severe or other symptoms appear, such as:
Changes in the color of the skin (yellowing, also called jaundice)
Skin rashes, brown blemishes or spots
Skin itching
Yellowing of the eyes
Dark circles around the eyes
Excessive sweating
Strong body odor
Bad breath
Redness in the palms and soles, accompanied by inflammation and itch
Dark colored urine and pale or gray stools
Joint pains
Fatigue
Loss of appetite
Unexplained weight loss
Nausea and vomiting
Abdominal bloating
Swelling of the testicles
High fever
Rapid heart rate
Causes and Treatments of Liver Pain

Pain in the upper right side of the abdomen may be caused by conditions that affect the liver itself. The pain may be referred or felt as pain in the right shoulder. This type of liver pain may be due to:
Liver inflammation or chronic hepatitis
Fatty liver disease
Liver abscess
Cancer of the liver
Liver cirrhosis
Infections causing enlargement of the liver and spleen
Liver toxicity
Alcoholic liver

Some conditions outside the liver can irritate or increase the pressure on the liver, causing liver pain, and these include:
Gallstone disease
Accumulation of fluid in the abdomen (ascites)
Increased stomach acidity and inflammation (gastritis)
Right lower lung pneumonia
Irritable bowel syndrome

Most cases of liver pain related to liver disease are serious and life threatening. Some of these diseases have similar symptoms, such as liver pain, yellowing of the skin and eyes (jaundice), fatigue, loss of appetite, and unexplained weight loss. Immediate diagnosis and treatment should be done, because the liver is a vital organ, and disruption in its function may be serious and potentially fatal. Blood tests, liver function evaluation, and imaging studies may be necessary to make a proper diagnosis. In some cases, such as liver cancer, a liver biopsy may have to be taken.
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Users who thank TonyDewitt for this post: Definatelyworried 

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replied May 27th, 2013
Experienced User
I stand corrected, the reason i thought the liver did not have pain receptors was through reading an article from a hep c expert, however the post above is much more detailed and reliable.
Unremarkable information indeed.
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replied May 23rd, 2013
Experienced User
Hepatitis c is only transmitted through blood to blood contact, it rarely happen through rough gay sex, and not through heterosexual sex, especially not giving and receiving oral.
Hep B on the other hand is easily transmitted by most sexual acts.
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replied May 28th, 2013
how dangeros is hepatites B
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replied May 24th, 2013
Experienced User
Man what is up with this forum? I can never get to the last page is anyone else having this problem?
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replied May 25th, 2013
Experienced User
I just found out that in SOME states the health insurance companies consider hsv2 as a pre-existing condition and could deny you coverage because of it.
I think that is rediculous.
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replied May 25th, 2013
Experienced User
DW,

That's totally ridiculous your kidding right? Hsv2 over half the people on this earth are infected with it maybe more.
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replied May 25th, 2013
Experienced User
S49
I wish i was kidding, I'm not though. But it's not in every state.
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replied May 25th, 2013
Extremely eHealthy
DW,

What's not in every state? There's NOTHING that's not in every state!!! Where are you getting your information from?

Jesus Christ.
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replied May 25th, 2013
Experienced User
Not every state considers herpes simplex virus 2 as a pre-existing condition. Just throwing random facts that some people might find useful.
In some states simplex herpes virus 2 will prevent you from obtaining health insurance.
I forget where I got this info but it was online.
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replied May 26th, 2013
Experienced User
So if you have been diagnosed with hsv2 make sure to keep you health policy because if you loose it you won't be able to get a new one. If you think you have hsv2 don't get tested and you will never be officially diagnosed.
However this won't matter when Obama care takes effect because, an insurance company won't be allowed to deny you coverage or even raise premium prices based on any pre-existing condition. Obamacare takes effect sometime in 2014.
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replied May 25th, 2013
Experienced User
Tony
Unfortunately we do have to figure this on our own.
Sometimes i feel like I'm going to end up in a mental hospital I'm going crazy for sure.
On the bright side Louisiana just made htlv part of there comunicable disease list recently this year. I hope other state start following the lead.
I have a feeling its possible that htlv will be more public soon.
They say that at least 66% of porn actors have hsv2.
Tony
If you had to guess what % of porn actors have htlv?
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replied May 25th, 2013
Extremely eHealthy
DW,

Good question about porn actors - if this crap ever made it into porn land, they'd all be infected within weeks. I should get on a plane and pop one over there just so that this disease will FINALLY be recognized.

Louisiana needed to add HTLV to their list because of the amount of IV drug users (actual fact). I was reading about a lady who died from Mycosis Fungiodes - her dead husband was a IV drug user and the stupid ass doctors couldn't put it together that HTLV is what was killing her / causing her MF.

And Scared's right, more than half the world is infected with HSV2. We are experiencing liver pain & liver counts but this is not any form of Hepatitis.

Best wishes.
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replied May 25th, 2013
Experienced User
Tony
the only two states that have htlv in their communicable disease list is Idaho and now Louisiana.
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replied May 26th, 2013
Extremely eHealthy
Imagine that - Idaho! So much for the low risk state theory - all states are at risk!!!
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replied May 26th, 2013
Experienced User
Not every state keeps record of who and how many people test positive for htlv, in fact Idaho has been the only state that has been doing that, ironically the stats are not very high there.
Unfortunately the states that should be taking action are not.
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replied May 25th, 2013
Experienced User
I think that California, New York, Florida, Louisiana , Texas, Ne Mexico, and New Jersey are the states most affected by htlv of course i think its posible to find at least a few cases in each and every state in the usa.
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replied May 26th, 2013
Extremely eHealthy
Dude, it is EVERYWHERE - just look at the mix of people on this forum - we represent states all over the USA, the Carribean, Europe, etc. By saying it's not everywhere, you're buying into the idea that it's not an epidemic, and we are living proof that it is. Please don't go there.

Best wishes.
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replied May 27th, 2013
Extremely eHealthy
PS: Don't forget that the origin of HTLV is from indigenous people in Africa, South America, Australia, North America, Japan, etc. So when you're counting states that are more likely to have HTLV, make sure you consider states with large native Americans populations.
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replied May 26th, 2013
Experienced User
From a study called-
Cytomegalovirus seropositivity is significantly associated with mycosis fungoides and Szary syndrome.
Abstract
Although mycosis fungoides (MF) may arise through persistent antigen stimulation, cytomegalovirus (CMV) is not a known risk factor. To study the incidence of seropositivity to viral infections, we compared MF and Szary Syndrome (SS) patients to healthy bone marrow donors and other historical control groups. Baseline screening serologies at baseline were performed on 116 biopsy-proven MF/SS patients at MD Anderson Cancer Center from 1992 to 2001 and on healthy bone marrow donors evaluated by the transplant service from 1988 to 2001. Antibodies to HTLV-I/II, HIV-1, EBV, and CMV were measured using standard enzyme-linked immunosorbent (ELISA) and membrane enzyme immunoassay (MEIA) assays. One hundred thirteen (97.4%) of all MF/SS patients had positive CMV IgG serologies at initial presentation. One hundred thirteen patients with MF/SS were tested for HIV, and all were negative by ELISA. Of 114 patients tested for HTLVI/II, only one was positive. Early- and late-stage patients' seropositivity rates were significantly higher than healthy bone marrow donor controls (chi(2).05(df=1) = 71.79). By stage, 98.1% of early-stage MF patients (IA, IB, IIA; 52/53) and 96.8% of late-stage MF and SS patients (IIB-IVB; 61/63) were seropositive compared with healthy bone marrow donors whose seropositivity rate was 57.3% (757/1322). Because the rate of CMV seropositivity increases with age, a subset of cutaneous T-cell lymphoma (CTCL) patients 55 years or younger were compared to age-matched healthy donor controls; their seropositivity rate for CMV was also significantly higher (chi(2).05 05(df=1) = 20.4). EBV titers were positive by serology in 13 patients who were examined prospectively. CMV seropositivity is highly associated with MF and SS, even in the earliest stages of the disease, and is significantly higher than that of healthy and immunocompromised controls.
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replied May 26th, 2013
Extremely eHealthy
I just noticed that my post on another topic on this site got deleted, so again if the open political environment here changes to become censorship of mentioning HTLV, please remember that we can always go to the nice people at the PhoenixRising site, they are open to discussion of HTLV and anything else. Also the HTLVhelp site is a refuge as well.

Best wishes.
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replied May 27th, 2013
Experienced User
Tony
Do you consider a two year htlv antibody test reliable?
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replied May 27th, 2013
Extremely eHealthy
DW,

No, I don't consider the antibody test for HTLV to be reliable (again Sowadsky on TheBody site has witnessed this as head of the Nevada State Health department - another one of those 'low risk' states), except for the new testing that's been developed in Brazil where the government and medical authorities are taking HTLV seriously. Like I suggested before, we should buy the tests from Brazil to see if we are positive.

Recall Alberto from Italy NEVER tested positive on the HTLV antibody test, just PCR after two years, and now he's 7 years infected and experiencing Mycosis Fungoides (Leukemia).

So no, I have NO faith in the HTLV antibody test, no matter how many years you wait. By the time Alberto tests positive on the HTLV antibody test, he will be dead - same goes for the rest of us. If you think rashes and itches are our biggest problems, look up how many deadly disorders are caused by HTLV.

Best wishes.

PS: ANOTHER one of my posts on another topic here got banned & deleted, so something strange is happening.
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replied May 27th, 2013
Experienced User
Tony
I'm just trying to figure this out so don't think that I'm arguing with you.
From an article that said brazil is also neglecting htlv.
Brazil has received worldwide recognition for the country's public health policies, especially with respect to how the nation has addressed the pandemic of HIV/AIDS [8]. Such success against HIV/AIDS was possible only because Brazil's constitution recognizes and guarantees healthcare as a right of every citizen and the country's public health ministry provides a multidisciplinary prevention program and free medication for HIV/AIDS. [8]. However, such public health policies have not been applied to HTLV-1 infection, which is not even listed as an infectious disease that should be addressed by public health action. Thus, HIV/AIDS may overshadow the problem of HTLV-1 in Brazil, and consequently, HTLV-1 has become essentially unknown to most of health professionals and should be considered a public health problem in Brazil.

Tony
Do you consider a two year htlv pcr reliable?
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replied May 27th, 2013
Extremely eHealthy
I don't think you are arguing with me - you asked me a question & I gave you an answer. Brazil is leading the way with HTLV testing, regardless of HIV, and because HTLV is recognized as a public health problem in Brazil, something is being done about diagnosing it. Here in the USA, we could all have HTLV and the doctors show us the door.

Best wishes.
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replied May 27th, 2013
Experienced User
Yes you are right about that you can't even ask for a test at a clinic here in the usa.
But in brazil the clinic will test you but I'm sure they are testing with an antibody test and they go by the 3-6 month window period based on what i have read.
Obviously there are those special instances where in the usa and brazil will perform with special techniques such as lips and pcr with tax/Rex primers none of these two test are commercially available in either country. Am I right or wrong?
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replied May 27th, 2013
Extremely eHealthy
Sorry, you're wrong.

In Brazil:

1. No special circumstances.
2. New test developed by Gene ID is 100 percent accurate.
3. Even before the new test comes out, the Brazilian protocol is to test with all three tests (antibody, PCR, and WB), repeating one of those tests TWICE (you haven't been paying attention to my previous posts).
4. 3-6 month window period? Dude, the HTLV window period is 45-60 days, where have you been? LOL

Let's get tested in Brazil, and treated in Kenya; this way we will all know what we have AND know that we won't be dying from it in 7 years like Alberto.

Best wishes.
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replied May 28th, 2013
Extremely eHealthy
...
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replied May 29th, 2013
Hi Tony, going to Brazil next month...could not find any info on this company or where to test. Any link you can share ? Thx
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replied May 30th, 2013
Experienced User
If you youtube htlv gene id, you will see Dr. Rocha talking about it, unfortunately it's not in English.

Also a brief discussion about it.
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replied June 1st, 2013
Extremely eHealthy
New Brazilian Test for HTLV
Resperanza,

That's fantastic! AdviseMe posted about this test by a company called Gene ID a few pages ago - please buy me one of these tests, I will send you the money now - send me your address in a private message. This will be huge if I test positive then I can try to find a doctor to treat me.

Thanks very much in advance.

PS: I googled "Gene ID HTLV Test" and found the following:

Test for HTLV

Edition 205 - March 2013

A diagnostic kit to detect types 1 and 2 HTLV (Human T-cell Leukemia/Lymphoma Virus) retro-viral infections, as a follow-up to other positive test results, is under development at the RP Blood Center, which is affiliated with the Ribeiro Preto School of Medicine of the University of So Paulo (USP), in partnership with Gene ID, a company based in So Carlos, also in the state of So Paulo. “We collect blood and extract DNA from the cells of patients for testing,” says Simone Kashima Haddad, researcher and coordinator of the Molecular Biology Laboratory of the Blood Center, where the research is led by Professor Dimas Tadeu Covas. “Brazil and other South American countries are considered endemic areas for HTLV,” says Haddad. There are about 2.5 million infected people in Brazil, and between 1% and 5% of these will develop diseases such as leukemia or neurological disorders. Each confirmatory test, which is currently available and imported, costs much money. “We would like a more sensitive and less costly diagnostic tool.”

Revistapesquisa dot fapesp dot br slash en slash 2013 slash 04 slash 24 slash test-for-htlv
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replied May 28th, 2013
Experienced User
Silencing of HTLV-1 gag and env genes by small interfering RNAs in HEK 293 cells
abstract
Since the discovery of RNAi technology, several functional genomic and disease therapy studies have been conducted using this technique in the field of oncology and virology. RNAi-based antiviral therapies are being studied for the treatment of retroviruses such as HIV-1. These studies include the silencing of reg- ulatory, infectivity and structural genes. The HTLV-1 structural genes are responsible for the synthesis of proteins involved in the entry, assembly and release of particles during viral infection. To examine the pos- sibility of silencing HTLV-1 genes gag and env by RNA interference technology, these genes were cloned into reporter plasmids. These vectors expressed the target mRNAs fused to EGFP reporter genes. Three small interference RNAs (siRNAs) corresponding to gag and three corresponding to env were designed to analyze the effect of silencing by RNAi technology. The plasmids and siRNAs were co-transfected into HEK 293 cells. The results demonstrated that the expression of the HTLV-1 gag and env genes decreased significantly in vitro. Thus, siRNAs can be used to inhibit HTLV-1 structural genes in transformed cells, which could provide a tool for clarifying the roles of HTLV-1 structural genes, as well as a therapy for this infection.
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replied May 28th, 2013
what abot htlv...we r all hiv negative but do we need to test for htlv
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