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Certain HIV positive, but negative tests (Page 45)

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August 30th, 2012
Extremely eHealthy
A Role for Tofacitinib Within the Treatment of ATL and HAM/TSP
AdviseMe,

Tofacitinib and AG490 are both JAK inhibitors (JAK being an inflammation marker). Alternatively, the Bioniz BNZ-y peptide works to inhibit three difference interleukins (2, 9, and another I can't recall) - look at the diagram posted on the HTLVhelp page on face book. While the Bioniz drug has hope for HAM and possibly MS, the JAK inhibitors are directly interrupting the life cycle of HTLV and reducing its viral load. Tofacitinib will be the first approved drug that can also fight HTLV; the fact that it's approved for less life threatening conditions like arthritis, psoriasis, colitis makes it ideal for HTLV sufferers to access. I'm going to go on this as soon as it is available, the official date is November 21, 2012. I'd rather do something about HTLV before it causes me to be in a wheelchair with HAM or dead with ATL.

Best wishes.

Here's the medical article titled "A Role for Tofacitinib Within the Treatment of ATL and HAM/TSP":

We evaluated the action of the Jak3 inhibitor, CP-690,550, on cytokine dependent ex vivo proliferation that is characteristic of peripheral blood mononuclear cells (PBMCs) from select patients with smoldering or chronic subtypes of ATL, or with HAM/TSP whose PBMCs are associated with autocrine/paracrine pathways that involve production of IL-2, IL-9, IL-15, and their receptors. CP-690,550 at 50 nM inhibited the 6-day ex vivo spontaneous proliferation of PBMCs from ATL and HAM/TSP patients by means of 67.1% and 86.4%, respectively. Furthermore, CP-690,550 inhibited STAT5 phosphorylation in isolated ATL T cells ex vivo. Finally, in an in vivo test of biological activity, CP-690,550 treatment of mice with a CD8 T cell IL-15 transgenic leukemia that manifests an autocrine IL-15/IL-15Ra pathway, prolonged the survival duration of these tumor-bearing mice. These studies support further evaluation of the Jak3 inhibitor CP-690,550 in the treatment of select patients with HTLV-I-associated ATL and HAM/TSP.
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replied August 31st, 2012
Experienced User
Dear Everyone,
i'm so in pain most of the time regarding my throat , always have this stuck thing inside my throat & it is hard to swallow all the time,
whenever i search online or try to find out what is it could be i find HIV , i know that i got tested more than one time long after the window period , but i'm loosing my mind here with all these symptoms on my body, i can't find another explanation ( the only one i got is i might have HIV but not showing in my blood test results ) Also my GF blood tests are fine after one year of our first met, she just made another test ( HIV AG\ab ) which is Negative as usual, we almost break-up because i'm always talking about this & blame her for all of that,
sorry guys but i have only you to talk to in this world.

a lot of pain all the time in the throat ,
all the time pain in my lower back ,
all the time i have spots & patches , ulcers in my tongue & mouth.

any advice will be a great help..
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replied August 31st, 2012
Hi casper,

I am also suffering these pains i.e. Throat and tongue. My tongue is covered by white patch since last november. There is no change even for one day. The pain around my tonsil area is just a torture. I don't know the cause still now. Most probably my case is HIV. but many negative results. our immune system is compromised because of viral infection. Thus, candida over growth happened in our body. Thrush and sore throat is the result of candida. But the mystery is what is that virus that is causing our problem? I am certain that it is viral infection. but don't know which virus.
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replied August 31st, 2012
Extremely eHealthy
Casper / DarkGuy,

Your problems are not caused by HIV - no way, no how. I have the same symptoms as you, and I don't have HIV neither. All of our symptoms are caused by HTLV. I know that's hard to believe, because no one talks about HTLV, no public campaigns exist against it, doctors don't discuss or even test for it. HTLV will be the next big epidemic, and will be worse than HIV because (1) no routine testing exists (2) some people take years to test positive for HTLV. In the meantime, HTLV is spreading faster than HIV.

DarkGuy - I put you in touch with Alberto from Italy, who is now experiencing leukemia from being infected with HTLV only seven years ago. Are you saying that he's not enough proof that HTLV exists? Did you read the post on the TheBody site where a bunch of people got sick with lymphoma from having sex?

How can I prove to any of you that HTLV exists, that as many people have it as HIV, and that we most likely all have it also? And if I could prove that we all have it, what then? No treatment, unless we lie that we have arthritis in order to get Tofacitinib.

Best wishes.
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replied September 1st, 2012
Tony,

I didn't check my email these days, that's why I didn't reply for him. Now i sent msg for him and will be waiting his reply.

My symptoms seems like HIV rather than HTLV. Because my WBC count is getting lower and lower. I did 8 times rapid and elisa tests. I don't know which generation testing methods are they. I would like to do one pcr hiv test if i can get the chance to do that. But I don't think it is possible to do it here. I will do HTLV test as well if they are willing to do it for me.
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replied September 1st, 2012
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DarkGuy,

I'm just saying that HTLV is a real problem & people in every country have it. I'd love to say it's only in Japan, South America, and the Carribean, but it's literally everywhere, Europe, Australia, Asia, etc. Like everyone else, I never considered it a health problem because the government & medical industry never mentioned it. There are people on the HTLV help page on face book who have HTLV, some of which don't even know how they got it. At least all of us know how we got sick.

Best wishes.
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replied September 2nd, 2012
Experienced User
how come it is not HIV Tony,while every single thing on the web says that it is , HIV is the main cause for the trush, the sore throat, the white ulcers all over my tongue , patches on my mouth all the time.
all are HIV symptoms , how come it could be something else
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replied September 2nd, 2012
Extremely eHealthy
Casper,

Every symptom of HIV can also be a symptom of HTLV - everyone who is sick fears that that it's HIV, that's a very understandable concern, since HIV is advertised as the great plague of the 21st century. But once everyone's been tested beyond the window period for HIV, everyone needs to test for other infections, like HTLV, Hepatitis, Lyme, etc. DFrank, Ustas, AdviseMe, and myself all know that we don't have HIV, and hopefully Dalton, D-man, and others feel the same way. At the same time, we all know that we are sick, but still know that it's not HIV. I'm waiting for the day that HTLV is announced as the next big epidemic. Half of the people infected with HIV are also co-infected with HTLV, but even for them, it remains a secret that HTLV is causing nerve damage and spinal cord damage that renders them unable to walk.

Best wishes.
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replied September 3rd, 2012
Experienced User
Guys , the test results came back today ,

i'm Negative for ( HIV 1,2) , (HTLV 1,2) , (HPV) , (CMV) , (Syphilis) , (Clamydia) , (Gonorea) , (Hep A,B,C) , (Herpes Simplex 1) the doctor told me i got old Herpes Simplex 2 infection,but it is ok , i don't have to worry about it at all.

Tony . i have read the HTLV report carefully , it said 4-6 month window period, if you tested after that you are completely fine, this is in one of the best labs in Sydney\Australia.

What else shall i do guys ,The Sore Throat pain still there , even harder everyday..
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replied September 3rd, 2012
Extremely eHealthy
Casper,

Congrats on your negative tests - have you considered EBV or Lyme?

Best wishes.
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replied September 4th, 2012
Experienced User
Thanks Tony , i wish you all the best man (without you) we will never have the courage or the knowledge to do that..
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Users who thank casper012 for this post: TonyDewitt 

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replied September 6th, 2012
Extremely eHealthy
Casper,

Youy're welcome and thanks for the kind words.

Best wishes.
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replied September 3rd, 2012
Experienced User
yup , i forgot to say , EBV is Negative ...
But i don't know what is Lyme even ???
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replied September 3rd, 2012
Extremely eHealthy
Lyme is a bacteria related to Syphilis that can be spread by tick bites; sexual transmission of Lyme is still controversial. Perhaps Lyme is not a problem where you are in Australia. You might be aware of the prevalence of HTLV in Australia, it's endemic to the native people. I'm glad that you read that the HTLV window is six months, since I was unable to find HTLV antibody window lengths in the labs & doctors that I contacted. I've tested negative for HTLV at 4.5, 7, and 8 months, and I am going to continue testing for it every two months going forward. My next test (10 months) will be in the middle of this month. There's enough people with HTLV symptoms who continue to test negative to warrant further testing for HTLV - I'm sorry, it's not what you want to hear, and certainly it's something I don't want to have, but the symptoms are there for all of us, and we are in many different parts of the world.

Best wishes.

Best wishes.
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replied September 3rd, 2012
Experienced User
CONGRATULATIONS CASPER012 on your negative test results. I hope this gives you some relief so that you can sleep well and party tomorrow.

Whatever is in my system, was transmitted to me sexually.
I was reading about some bacterias and parasites, and they sounded like a possible cause of my problem. As soon as i got back those names, i'll post them here.

All the best guys.

Casper, go party my friend.
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replied September 4th, 2012
Experienced User
Thanks Ustas, i will man , waiting for the weekend Smile
keep around man , so we hopefully find-out what is wrong with all of us ...
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replied September 3rd, 2012
Extremely eHealthy
Ustas,

Good to hear from you - I think about you often because I know that you have a good head, and know that we don't have HIV, and that you are working on alternative causes. As in Australia, HTLV is a problem in Jamaica as well. I don't want any of us to have anything bad, but like I said HTLV is a worldwide problem, and it's not being dealt with responsibly by governments and the medical industry. I've been in touch with people who are trying to move forward with treatments that have resulted from medical research, it's a long tough road - even if a cure was discovered tomorrow, it would take ten years to get through the red tape before people's lives could be saved. Our best bet for a cure is a treatment by Dr. Todd Rider called DRACO - he's splitting a single research salary with three other scientists, and is getting no financial help from the outside. The promise of DRACO is that it will cure ANY VIRUS. Unfortunately, he's not even allowed to accept donations, any money he receives has to be from either the government or from a start up company. I'm going to do everything I can to make that start up company happen, I'm tired of laying in bed everyday waiting for death to knock on my door.

Best wishes.
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replied September 4th, 2012
Experienced User
Draco
Tony you are right, even if there is any cure found from Draco, Greedy medical companies will stop this medicine to reach common peoples hand for their financial greed.Also did a search on Todd Rider Draco, very novel approch. However dosent reads any thing for HTLV,HIV,HPV HSV viruses.
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replied September 4th, 2012
Extremely eHealthy
AdviseMe,

On another forum we exchanged emails with Dr. Rider - he is running a staff of four scientists on the salary of one person, so the progress is very slow. He plans on testing his approach against EVERY virus, but again since the full funding isn't there, progress is slow. He was asked point blank if he believed that his approach would work against retroviruses, and his answer was a definite yes. I know that the people on this forum would love to hear that Dr. Rider's approach has been tested successfully against HTLV & HIV, but he hasn't gotten to that point yet. On that other forum, I suggested that we set up an on-line fund to donate money to his efforts, but Dr. Rider explained that's not allowed by the school he works for, MIT. So either a startup company or the government has to provide the money that's required for every virus to be tested against his approach. I'll certainly let you know if the startup company becomes a reality, since Dr. Rider's work is possibly the greatest medical discovery of our time.

Best wishes.
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replied September 4th, 2012
Extremely eHealthy
Doing a search on "HTLV undetectable", I found the following text:

Within two years of the first appearance of symptoms, a person will likely have experienced an increase in the frequency of urination, and weakness, numbness, pains, or cramps in both legs. In a physical examination, an increased knee-jerk reaction is seen. Difficulty using both legs is evident. Finally, eye abnormalities such as changes in the appearance of the pupil are present.

The visualization of spinal cord nerve damage can also aid in diagnosis. Lesions and swelling associated with the spinal cord can be visualized by magnetic resonance imaging (MRI) .

Demonstration of the presence of HTLV-1 is an important part of the diagnosis. Antibodies to several viral proteins can be detected shortly after an infection begins. But, within a few months, an infection can become undetectable using antibody detection techniques. Thus, the absence of HTLV-1 antibodies does not necessarily rule out an infection. HTLV-1 genetic material can be detected from lymphocyte cells using a sensitive technique called polymerase chain reaction (PCR).
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replied September 5th, 2012
Experienced User
Tony, what happens if you one keeps repeating negative on PCR which is considerd sensitive and most specific?
What next?
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replied September 5th, 2012
Extremely eHealthy
AdviseMe,

HTLV testing is a nightmare - refer to what I wrote above - MRI testing might detect spinal cord damage. Have you taken the PCR test for HTLV yet?

Best wishes.
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replied September 6th, 2012
Experienced User
Tony no, i havent taken MRI testing, i still think it is even difficult to diagnoise with MRI at early stage.
Also it is very difficult to convince my doc and lab why do i need a PCR when antibodytest is so sensitive according to them.
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replied September 6th, 2012
Extremely eHealthy
AdviseMe,

I gave some thought to your question about testing - if you look up "HTLV testing algorithm", you will find a nice PDF file by Arup, where they recommend Western Blot testing as a follow up to antibody testing. They take the results of the WB testing and look for specific proteins of HTLV (p19, p15, etc.) to determine if you have HTLV. Besides antibody & PCR, Western Blot is the only other testing technique for infections.

Best wishes.

Best wishes.
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replied September 8th, 2012
Experienced User
Thanks Tony, does that mean some one negative on antibody should take western blot.Some studies reveals People who test negative on westernblot test positive with PCR test which is more sensitive.
What if some one tests negative on PCR is that conclusive?
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replied September 10th, 2012
Extremely eHealthy
AdviseMe,

I wish that I could say that any test for HTLV is conclusive - published articles state that HTLV testing can be very tricky. Having had the PCR test for HTLV, and having had several antibody tests for HTLV, I would say that by process of elimination, the Western Blot test would be the next test for you to take. I'd love to say that PCR is conclusive, but I have had PCR testing (negative) and still feel that I have HTLV.

Best wishes.
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replied September 4th, 2012
Experienced User
Testing for HTLV is a nightmare, people suffer from all possible symptoms due to HTLV but still keep testing negative.
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replied September 4th, 2012
Experienced User
You are welcome casper. I am hanging in here with all these symptoms.

Tony, i will not worry myself over HIV. I know something is wrong with me and it's not HIV.

Things are getting worst these days. My legs are feeling hotter these days and that's one of my main symptoms now.

I think i'm going to see a doctor before the week ends.
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replied September 4th, 2012
Extremely eHealthy
Ustas,

I'm glad that you have cleared yourself from HIV - it's a bad disease and it's good to have that off of your mind. Good luck with your legs & the doctor.

Best wishes.
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replied September 5th, 2012
Experienced User
Thanks Tony
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replied September 6th, 2012
Experienced User
Broad specterm Antiviral
Thanks Tony, for contacting Todd Rider.
Here is an excerpt from thebody on broad specterm antiviral.
By Warren Tong
From TheBody
May 16, 2012
Could a single drug be used to treat a variety of viruses -- potentially all viruses, including HIV? At least three novel approaches are being worked on to create such a drug, also known as a broad-spectrum antiviral.
Broad-spectrum drugs already exist in other areas of medicine. For instance, we have antibiotics to treat a wide range of bacterial infections. Unfortunately, while antibiotics work great at thwarting bacteria, they are largely ineffective against viruses.
Presently we have different antivirals that tend to treat specific diseases (e.g., Tamiflu only treats influenza, and most HIV medications only treat HIV). However, as people with HIV are well aware, viruses mutate and grow resistant to current antivirals.

WIRED recently published an article highlighting three new approaches to antiviral treatment that may be able to stop a wide range of viruses, but without the risk of the viruses becoming resistant.

Prosetta: Chipping Away the Virus's Shell
Before he founded the biotech company Prosetta, researcher Vishwanath Lingappa, M.D., Ph.D., realized that viruses use proteins, taken from the very host cells they infected, as building blocks in producing the protective shells that exist around new, replicated viruses. Lingappa used this knowledge as a basis for his attempt to develop a broad-spectrum antiviral.
Instead of developing a drug to target the virus itself, which could then evolve and grow resistant, Prosetta's approach aims to alter the proteins in our own cells -- without damaging our cells in the process. "Prosetta's molecules bind to the proteins that viruses need to create their shells, stopping the maturation process. And because these proteins come together only to make viruses, the drugs should be nontoxic to patients," WIRED reports.
When asked how Prosetta's drug might fare against HIV, Lingappa told TheBody, "Our approach appears to work for all families of viruses, including the Retroviridae, of which HIV is a member. One of the nice things about this approach is that resistance is extremely unlikely to develop to these compounds, since they target the host, not the virus. Moreover, the compounds appear to do so in ways that are essential for the virus but not for the host."
Lingappa added that his team has been able to identify chemical compounds "that have proven highly active against HIV" in lab tests, and he is excited for Prosetta's potential in terms of a possible cure for HIV. But he also knows there is a long road ahead.

Interferon: The Next Generation
People living with hepatitis C are likely familiar with interferon, which has been a fundamental part of hep C treatment for years. Interferon is a protein made by our immune system to fight off viruses, bacteria, tumors and other unwelcome visitors. Interferon treatments, such as PegIntron and Pegasys, boost the body's ability to fight back.
However, many viruses prevent interferons from being made. And interferon treatments on the market often have their limitations and side effects.
Eleanor Fish, Ph.D. of the University of Toronto and other researchers are looking into developing a better version. "They've created synthetic interferons that last days instead of hours and will wipe out hepatitis C viruses completely in up to 81 percent of treated patients, depending on the strain," WIRED reports. "During Toronto's SARS outbreak, Fish tested synthetic interferons on a small pool of patients and found that their lungs healed significantly faster than those of control patients."
These preliminary results are promising and more research could lead to a very effective broad-spectrum antiviral. (TheBody attempted to reach Fish to discuss how her approach might apply specifically to HIV, but was unable to do so before this article was posted.)

DRACO: The Kamikaze-Cell Approach
The third and perhaps most interesting method reported in WIRED is an antiviral in development named DRACO (Double-stranded RNA (dsRNA) Activated Caspase Oligomerizer). It is being engineered to do two things: identify cells that are infected with a virus and trigger those infected cells to commit suicide. "Because viruses have never been exposed to Draco before, their counterattacks are useless. The infected cells die before the viruses can mature," WIRED notes.
In a paper published in PLoS One last July, lead researcher Todd Rider, Ph.D., and his team at the Massachusetts Institute of Technology (MIT) explained the science behind DRACO: The drug "selectively induces apoptosis in cells containing viral dsRNA, rapidly killing infected cells without harming uninfected cells," they write. Lab testing has "shown that [the DRACOs] are nontoxic in 11 mammalian cell types and effective against 15 different viruses, including dengue flavivirus, Amapari and Tacaribe arenaviruses, Guama bunyavirus, and H1N1 influenza."
DRACO has not been tested against HIV yet, but Rider told TheBody.com, "We have recently established collaborations to test DRACO against HIV and several other viruses of interest. We certainly hope that DRACO will be effective against HIV, and that it can be a true cure for the virus."
However, while Rider is hopeful, he added that his drug is still a very long way from being proven effective in humans. "Even in the best case, MIT, our collaborators, and companies to which we license this technology will need to do several more years of animal trials before any human drug trials can begin, and then the human trials will probably take at least a few years before DRACO could be approved for everyone to use."
So, while all three of these approaches show a lot of promise, we shouldn't get our hopes up just yet. There are dangers to be wary of. For instance, we still don't fully understand the viral ecology in our bodies. Just like some bacteria naturally live inside our bodies and are helpful to our health, we may also be a home for "good" viruses that we don't know about, but that help us stay healthy and maintain our bodies' equilibrium. Still, further research on these approaches is definitely welcome. Hopefully more good results will follow.
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