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Certain HIV positive, but negative tests (Page 116)

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January 23rd, 2015
Experienced User
Is it possible that if we were able to get HIV medication that we would improve, even though we don't have a diagnosis? What do you guys think?
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replied January 24th, 2015
Extremely eHealthy
TRW,

That's exactly what I suggested in a recent post - Truvada is available, all you need to do is tell a doctor that you are at risk for HIV, and you can get a prescription for it. In my recent post, I said that I had a phone conversation with them where they said that they were wrapping up clinical trials for a new formulation of Truvada later this year. Sorry that you missed my recent post on this.

Best wishes.
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replied January 24th, 2015
Experienced User
Holy moly Tony. Has anyone with our symtoms been helped by this drug? If so, I'm trying it. Thanks!
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replied January 25th, 2015
Experienced User
you guys in the US can try that. In Italy you can't get PrEP yet Sad but i'm waiting for you to tell me if it really works. If so, I'll ask my Infectious Disease specialist to give me the drug. Even if I would have to pay for it, I wouldn't care.
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replied January 25th, 2015
Experienced User
Persistent high HTLV-1 proviral load in a patient
with complete remission of Adult T-cell leukemia/
lymphoma (ATL)

Andrea Mangano1*, Patricia Costantini2, Natalia Altamirano1, Griselda De Stefano3, Paula Aulicino1, Luisa Sen1

From 15th International Conference on Human Retroviruses: HTLV and Related Viruses Leuven and Gembloux, Belgium. 5-8 June 2011

MEETING ABSTRACT Open Access

ATL is a highly aggresive lymphoproliferative disorder caused by HTLV-1. While HTLV-1 proviral load increase with progression of the disease, changes follow- ing therapy in ATL have not been well characterized. We present a case of ATL in complete remission with persistent high HTLV-1 proviral load.
A 49-year-ol man was diagnosed as HTLV-1 carrier after a blood donation in 2004. He was born in Buenos Aires, a non-endemic area of Argentina. Four years later, he was diagnosed with T-cell lymphoma but rapidly blast cells were observed in peripheral blood and it was classified as T-cell leukemia . Chemotherapy was started in November 2008 and reached complete remission after 6 cycles. In May 2009, Interferon and zidovudine was started as maintainance therapy. HTLV-1 proviral load were log10 5.5 copies/106 PBMCs and log10 5.3 copies/106 PBMCs in September 2009 and December 2009, respectively. Due to persistent high proviral load, the therapy was changed to pegylated interferon, tenofovir and lamivudine (3TC). Proviral load levels were also high at 4 and 14 months on treat- ment (log10 5.45 copies/106 PBMCs and log10 5.35 copies/106 PBMCs, respectively).
With the combination of interferon and reverse tran- scriptase inhibitors for more than one year, the patient is in complete remission, 27 month after the diagnosis, despite the fact that he never even attained reduction of HTLV-1 proviral load.
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replied January 29th, 2015
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J,

Excellent article, since it pulls together leukemia/lymphoma and HTLV, along with tenofovir and lamivudine, which are the main ingredients of Truvada. I can't wait until the new formulation is available.

Best wishes.
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replied February 12th, 2015
Extremely eHealthy
Notice that antiretrovirals (zidovudine/AZT, lamivudine /3TC, and tenofovir/TDF)are being used to treat leukemia, meaning that they are finally realizing that it is caused by a retrovirus.

Best wishes.
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replied January 23rd, 2015
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Any thoughts from you guys regarding what we can do to get discovered? I mentioned a website before. I mentioned buying advertising on Google. It's great. You give key words and your ad shows up when people search for them. I'm sure we could come up with a lot of good ideas for key words or phrases like "HIV negative", "HIV symptoms", "Tested negative" etc..

I am willing to invest $ in it but I need some feedback from you guys. A forum? Be good to have a chat room. Or maybe I'm barking up the wrong tree... maybe sites like this one is a better bet...
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replied January 25th, 2015
Experienced User
The idea is a good one, however we need a proper plan to make it work effectively.
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replied January 25th, 2015
Experienced User
This is better news: promising results from therapeutic vaccine in ATL (immunotherapy):

I give you the link cuz I'm not able to publish the abstract here due to some censored words in the text:

www(DOT)ncbi(DOT)nlm(DOT)nih(DOT)gov(SLASH )pubmed(SLASH)25612920?dopt=Abstract
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replied January 29th, 2015
Extremely eHealthy
They always said that an HTLV vaccine was possible, but no one cared enough to do anything about it. Sad.
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replied January 29th, 2015
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J,

This is excellent news, since the vaccine is Tax-specific, with Tax being the most damaging component of HTLV. Thanks very much for this, perhaps we should start lobbying the authors to receive the same vaccine?

Best wishes.
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replied January 25th, 2015
Experienced User
Cancer Sci. 2015 Jan 23. doi: 10.1111/cas.12617

Recent advances in the treatment of adult t-cell leukemia- lymphomas.
Utsunomiya A1, Choi I, Chihara D, Seto M.

Author information

Abstract
Recent advances in treatment for adult T-cell leukemia-lymphoma (ATL) are reviewed herein. It is currently possible to select a therapeutic strategy for ATL and predict prognosis by classification of patients by clinical subtypes and clinicopathological factors. Although the overall survival (OS) of patients with ATL has increased marginally because of advances in chemotherapy, further prolongation of survival might be difficult with conventional chemotherapy alone. Promising results have been reported for antiviral therapy using zidovudine and interferon-, and indeed antiviral therapy is currently the standard treatment for patients with ATL in Western countries. Remarkably, the 5-year OS rates are 100% for both the smoldering- and chronic-type ATLs. Recently, treatments for ATL have included allogeneic hematopoietic stem cell transplantation and molecular targeted therapies. Furthermore, the anti-CCR4 monoclonal antibody mogamulizumab has been shown to have marked cytotoxic effects on ATL cells, especially in the leukemic type of ATL. In the lymphoma type of ATL, the response rate may be improved by combining mogamulizumab with chemotherapy. It should be recognized that prevention of infection from carriers of human T-cell leukemia virus type-I and transfer of the virus from mother to infant are crucial issues for the eradication of ATL.

--

100% survival in smoldering and chronic types… that's awesome. Smile
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replied February 3rd, 2015
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I'm a little surprised, I thought that 100% of everyone who gets ATL dies within a year. A coworker's brother (who happened to be a doctor) died this way less than 5 years ago.

Best wishes.
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replied January 26th, 2015
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Apparently, antiviral+immunosuppressant treatment is what to ask for:


Combined antiviral-immunosuppressive treatment in human T-lymphotrophic virus 1-Sjgren-associated myelopathy.

Display Settings:AbstractSend to:
Arch Neurol. 2006 Sep;63(9):1318-20.
Combined antiviral-immunosuppressive treatment in human T-lymphotrophic virus 1-Sjgren-associated myelopathy.
Pot C1, Chizzolini C, Vokatch N, Tiercy JM, Ribi C, Landis T, Perren F.
Author information

Abstract
BACKGROUND:
In several studies, antiretroviral drugs (principally zidovudine) have been used with success in the treatment of myelopathy associated with human T-lymphotrophic virus 1 (HTLV-1) (tropical spastic paraparesis-HTLV-1-associated myelopathy). The retrovirus HTLV-1 has been implicated as a causative agent of Sjgren syndrome (SS) in clinical reports and murine experiments. Moreover, a recognized complication of primary SS is a myelopathy, which has been shown in case reports to respond to immunosuppressive treatment.
OBJECTIVE:
To describe a patient with a rapidly progressive, extensive myelopathy with evidence of HTLV-1 infection and SS (probably secondary to HTLV-1) in whom we achieved spectacular therapeutic success using combined immunosuppressive and antiviral therapy.
DESIGN:
Case report.
SETTING:
University hospital. Patient A young Haitian woman diagnosed with HTLV-1 and SS developed extensive myelopathy leading to severe disability.
MAIN OUTCOME MEASURES:
Clinical and radiological improvement.
RESULTS:
Spectacular radiological and clinical recovery as well as stabilization were achieved with combined antiviral and immunosuppressant treatment. Follow-up at 2 years showed no signs of relapse.
CONCLUSIONS:
Both tropical spastic paraparesis-HTLV-1-associated myelopathy and Sjgren myelopathy are potentially very disabling. Rapidly progressive myelopathy secondary to SS necessitates the introduction of immunosuppressant therapies. The presence of HTLV-1 may confer the necessity to add antiviral therapy.
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replied January 26th, 2015
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I'm reading about Truvada. Why take it? It's to prevent getting HIV. Even if I have some undiscovered version of HIV, how would it help me if I already have it?
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replied January 27th, 2015
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TRW,

trust me, this is not HIV. But it could be another retrovirus, thus Truvada might be useful. The real challenge is finding a Dr. who is willing to get you a prescription with no diagnosis. Idk how it works in your country, but in Italy this would be pretty much impossible.

best
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replied February 3rd, 2015
Extremely eHealthy
In America, all you have to say is that you are involved with someone who is HIV positive - that's all it takes. I know several people who are in this exact position. I'm sure that it would work in Italy too, just try.

Best wishes.
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replied February 3rd, 2015
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TRW,

Why take Truvada? Because like J said, we might be dealing with another retrovirus, and like I said, we are dealing with HTLV, and Truvada has been used in at least one article J referenced. If you feel better, if taking this reduces or eliminates your symptoms, what's the problem? If you still feel the same way after a month, then stop taking it.

Best wishes.
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replied January 26th, 2015
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I was feeling pretty good today. My headaches were almost non existent. Then I pigged out on pizza. I had 5 large slices. Now my head has been killing me the whole evening. Any thoughts if the overeating can affect how I feel?
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replied January 27th, 2015
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TRW,

certain foods can trigger the immune response , thus producing inflammation and making you feel sick.

Please avoid red meat and don't eat too many carbs.

Eat plenty of vegetables, fish, rice, fruits. In general, try to get protein from different sources, such as beans and other legumes.

Please get probiotics daily. A healthy gut makes your brain healthy too, as well as your immune system.
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replied February 3rd, 2015
Extremely eHealthy
I totally agree with J on this - reducing carbs is key, a lesson that I first learned from DFrank. Keep in mind that immunosuppression allows yeast to thrive, so reducing carbs & increasing probiotics is key.

Best wishes.
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replied January 26th, 2015
Experienced User
Sorry to be a pain but I'm having a bad evening. I developed 3 around an inch each lumps on my left abdomen. Doctor says it's lipoma which is harmless fatty growths. Does anyone else have this?
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replied January 27th, 2015
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Have you guys ever heard of Dr. Michael Snyderman? He's an oncologist/hematologist in Buffalo, NY. As a CFS sufferer, he managed to treat his leukemia (CLL) with anti-retroviral drugs. He started with AZT+Raltegravir(Isentress), then adding Tenofovir. His fatigue and cancer markers got constant improvement.

He's now mainly dedicated in studying leukemia, neuro-immune diseases and cancers in Buffalo and holds clinical trials with AntiRetroviral Drugs.

www(DOT)youtube(DOT)com(SLASH)watch?v=TKp5 SR_utgs


Anyone living in the US, please consider contacting him and explaining what we're all going thru. I'm willing to fly to the US to get a diagnosis and/or possibly a treatment.

Here in Italy there's no way Drs will give me a prescription for AntiRetrovirals, not even if I pay for them.

Please let me know if u guys are successful in getting in touch with this Doctor.

Thanks,

J
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replied January 27th, 2015
Experienced User
Hi J. Thanks for all of your advice. My head feels much better today. It was real bad last night. I will try to eat better.

I live about 5hrs from Buffalo NY. I will try to get in touch with him, my brother. Thanks for the info!
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replied January 28th, 2015
Experienced User
Sounds awesome. Please let us know about any advancement. Best wishes
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replied February 3rd, 2015
Extremely eHealthy
J,

You're a logical guy - if someone is treating himself with antretroviral drugs, and sees improvement, that proves that the problem is a retrovirus. As much as I'd like to say congrats to the doctor, I'd also like to say DUH to him.

Best wishes.
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replied February 6th, 2015
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I want all of you to notice that this guy is taking more antiretroviral drugs than a full-blown AIDS patient would be taking. My point being that we shouldn't be snickering at the idea of taking at least ONE or TWO of these drugs ourselves (i.e. Truvada) if this guy is taking more.

Best wishes.
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replied January 28th, 2015
Experienced User
Here's Dr. Michael Snyderman's blog: http : // blogspot(dot)x-rx(dot)net
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replied January 28th, 2015
Experienced User
Hi J. I didn't check out the blog yet but have you corresponded with Dr. S on the blog or in any way yet?
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replied January 29th, 2015
Experienced User
Hi pal,

I didn't correspond with him yet. I hope I can get some good news from people living in the U.S. Smile

By the way, I read some pages from his blog and a lot of interesting information is provided.

Best
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replied January 28th, 2015
Experienced User
I'm curious if this is common with anyone else or if you know of anyone or if you have any ideas what it could be.

My health issues seemed to have begun a couple years ago a day or so after I confessed to my wife the terrible things I had done with other women. The stress on me was tremendous. I had to empty all the beer cans for fear I'd drink and kill myself. It's the truth. I wasn't sleeping at all for days and one night I had a headache that had me curled up on the bathroom floor. I went to the IR that night and another night a week later and the Docs said it was just stress related. I believe that to be false - something terrible happened, especially that first night.

Since then I've had headaches almost daily. Either they aren't as bad or I got so broken in with the first one that these don't seem bad anymore. When I have the headaches I also get slight numbness in my lips, blurred vision, change in how I walk...I've also had some jaw tightness and tight, achy forearms. During headaches I also have ringing in my ears.

This is pretty much my symptoms. Anyone else share these? Anyone else this being the primary symptoms - all seeming to stem from the head? Any ideas what it is? If you read HIV symptoms, these things are very common but of course I tested multiple times for HIV and I was negative (which I thought was such a blessing...) Thanks!
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replied February 2nd, 2015
Experienced User
I actually had an odd thought today. Find a way to get HIV from someone that definitely has it. Then if I'd get treatment... Thoughts?
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replied February 3rd, 2015
Experienced User
dont do it,man. :/ your current issues would only get worse
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replied February 3rd, 2015
Extremely eHealthy
TRW,

What you are missing here is that HTLV causes rapid progression to AIDS when coinfected with HIV, so its far from a free lunch. Try the antiretroviral drugs, like I've suggested even before J posted about the doctor using them on himself, withOUT getting HIV, and then let us know how you are feeling. You will not be sorry.

Best wishes.
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replied February 3rd, 2015
Experienced User
Guys,

Is anybody else getting a lot of new moles on his body? Since I got the infection, I'm getting many new moles and I got advised an annual check. I'm really scared I will get some kind of melanoma.
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replied February 3rd, 2015
Extremely eHealthy
J,

You have to keep in mind that immunosuppression means that anything you have going on before you were infected is now going to have a field day. That includes any viral infections, bacterial infections, yeast, etc. The best thing you can do is hit as many homeopathic antiviral, antibacterial, and anti-yeast modalities as you can find, since our immune system is getting whacked by this thing.

Best wishes.
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replied February 6th, 2015
Experienced User
J. I'm not dealing with that. I'm praying for you.
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replied February 6th, 2015
Experienced User
Thank you my friend,

I appreciate your support and prayers. I'm praying for you guys as well. I promise, one day we'll get out of it and we'll become able to manage our condition living a normal life.

Best.
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replied February 6th, 2015
Experienced User
J. I'm not dealing with that. I'm praying for you.
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replied February 6th, 2015
Experienced User
Htlv is slowly getting the attention it deserves as a global health issue:

THERAVECTYS Obtains Orphan Drug Designation from the European Medicines Agency for Its Lentiviral Vector-Based Therapeutic Vaccine against Adult T-Cell Leukemia and Lymphoma


“On World Cancer Day 2015 we are proud to be one of the most innovative players in the immuno-oncology space developing a new kind of treatment for more sustainable remission. In our continued effort to improve patient care we are moving to the next stage in our fight against cancer with the launch of our clinical trial for virally-induced Adult Leukemia/Lymphoma” Says Renaud Vaillant CEO

THERAVECTYS a fully-integrated discovery and clinical development biotechnology company focusing on the development of therapeutic vaccines and immunotherapy announced that the European Medicines Agency (EMA) has granted Orphan Drug Designation to its therapeutic vaccine candidate for the treatment of Adult T-cell Leukemia/Lymphoma (ATL/L).

ATL/L is a rare malignancy of a certain type of white cells T-Lymphocytes caused by the Human T-Cell Lymphotropic Virus type 1 (HTLV-1) with a prevalence up to 1% of the overall population in Japan. Approximately 5% of all patients infected with HTLV-1 will develop ATL/L in their lifetime.

Four ATL/L subtypes have been described with a poor prognosis (less than a year for the two most aggressive forms). Patients are confronted with a lack of well-tolerated and/or performant treatment options which to-date include biological treatments with serious adverse reactions as well as aggressive chemo and antiviral therapies or when eligible long and uncertain hematopoietic stem cell transplantation.

The biological compound is an investigational therapeutic vaccine aiming at inducing an immune response against HTLV antigens born by ATL/L with the aim of enabling the patients’ immune system to fight leukemic cells.

“Preclinical immunogenicity results obtained to-date are very promising and we are really excited by the perspective bringing a safe and better-tolerated alternative to patients who are desperately in need of a treatment” says Dborah REVAUD Senior Scientist in charge of the development project.

In Europe the Orphan designation is granted to drugs in development intended for the treatment the prevention or the diagnosis of life-threatening or chronically-debilitating diseases of a prevalence lesser than 5 in 10000 people. The designation allows sponsors to benefit from an accelerated development process as well as incentives and a 7 years market exclusivity once the drug is placed on the market.

“We are extremely pleased that the European Medicines Agency has granted an Orphan Drug status to our vaccine candidate against ATL/L” says Emmanuelle Sabbah-Petrover Head of Regulatory Affairs. “This is a significant milestone for THERAVECTYS and we intend to take full advantage of all incentives associated with this designation to pursue and further accelerate the development of the compound. We expect to recruit our first patients towards the end of Q3 2015 in Europe and advance further developments in the U.S. and in Japan in 2016.”

Should the vaccine candidate demonstrate a convincing safety and efficacy profile during its development against ATL/L the company is already considering the perspective of further developing the same vaccine candidate for HTLV-related infections as a therapy and possibly as a prophylactic approach.

About THV02

THV02 is an experimental treatment composed of two lentiviral vectors to be used in a prime/boost regimen in ATL/L patients infected by the HTLV-1 virus. Both investigational drugs encode the same antigens derived from four proteins of the HTLV-1 virus.

During preclinical evaluation THV02 has demonstrated to be safe and has presented an unprecedented immunogenicity profile in several models.

About THERAVECTYS

THERAVECTYS is privately-owned fully-integrated discovery and clinical development biotech company originating from the Pasteur Institute.

The company capitalizes over 15 years of fundamental research in the field of lentiviral vectors and has secured worldwide exclusive rights to Pasteur Institute intellectual property.

Based on its lentiviral vector technology platform THERAVECTYS develops therapeutic vaccines and immunotherapies to fight cancers and infectious diseases including a proprietary and differentiated CAR T-cell technology platform.

The company is strongly supported by renowned investors and former global biopharmaceutical executives and is rapidly progressing in its R&D activities and in-house GMP production capabilities.

Alone and in collaboration with partners THERAVECTYS is accelerating its clinical development programs and is planning to initiate two additional phase I/II clinical trials in oncology in 2015.
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replied February 6th, 2015
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J,

Excellent article, thank you! Like the anti-TAX vaccine that you previously posted, we should be receiving these vaccines as well, since they encode antigens against FOUR proteins of the HTLV virus.

Best wishes.
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replied February 6th, 2015
Experienced User
Hey Tony,

Yes, you're right indeed. If you read the article carefully, you'll se that the possibility of this vaccine is used as a prophylactic approach is mentioned. I guess that would be very costly, however something is going on in Htlv research and that's good news. Maybe in 10-15 years , before getting confined in a wheelchair, we'll be able to get some sort of effective and Htlv-specific treatment.
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replied February 12th, 2015
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J,

Why costly? Take a plane to Japan and get vaccinated - I'm sure they will give it to you for FREE. Don't wait for the wheelchair!

Best wishes.
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replied February 6th, 2015
Extremely eHealthy
They always said that an HTLV vaccine was possible, but no one cared enough to do anything about it. Sad.
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replied February 6th, 2015
Extremely eHealthy
PS: I posted the link to your article to the HTLVhelp Face Book Page.
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replied February 6th, 2015
Extremely eHealthy
Here's a message that I wrote to Scared1010, regarding his, and our plight:

Let's go over this, item by item:

1. Symptoms remain: weight loss, muscle loss, twitching leg muscles, bloodshot eyes, dry mouth & gum recession abnormal & inconsistant bowel movements, sleep problems, symptoms of HAM (dry mouth, twitching muscles, bloodshot eyes, lower back pain).

2. This is NOT hiv - you can test for that as much as you want (many of us have been tested more times than you can imagine).

3. Doctors don't care, and yes, they will back out by telling you that you have mental problems.

Best wishes.
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replied February 11th, 2015
Experienced User
newyorkerDOTcomSLASHmagazineSLASH2013SLASH 08SLASH26SLASHwhats-wrong-with-me

I'd like to know. What is wrong with me?!!!!!!!!!
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replied February 12th, 2015
Extremely eHealthy
I like this article because it pulls together all FOUR variants of HTLV:

Human infection with a plethora of simian retroviruses is well documented and has led to global pandemics, exemplified by the human immunodeficiency virus (HIV) and human T-lymphotropic virus (HTLV), and local outbreaks, as occurs with simian foamy virus (SFV), simian T-lymphotropic virus (STLV) and occasionally simian immunodeficiency virus (SIV).1,2,3 Given the demonstrated pandemic potential of retroviruses, a full understanding of the epidemiology and animal reservoirs of zoonotic primate retroviruses is of importance for monitoring and preventing future retrovirus pandemics.

The primate origin of these zoonotic infections has been identified by detailed epidemiological and phylogenetic analyses of both human and non-human primate (NHP) retroviruses. Through detailed examination of SIV infections in over 45 NHP species, it has been demonstrated that HIV-1 arose from multiple cross-species transmissions of SIVcpz and SIVgor from chimpanzees and gorillas, to people in west Central Africa.1,2 Similarly, HIV-2 in West Africa originated from multiple introductions of related SIVs from sooty mangabeys.1,2 Many studies have described ongoing zoonotic infection of primate workers, hunters and butchers with SFV from a variety of monkeys and apes and phylogenetic analysis showing that the co-evolution of SFV with NHPs has facilitated accurate identification of the simian origin of infection.3,4,5,6,7,8,9,10 Likewise, phylogenetic analysis has demonstrated that at least three of the four major HTLV lineages, HTLV-1, HTLV-2 and HTLV-3, originated from multiple introductions of their simian virus counterparts in monkeys and apes, STLV-1, STLV-2, and STLV-3, respectively.3,6,7,8 Thus, STLV and HTLV lineages are called primate T-lymphotropic viruses (PTLVs).

Of the four major HTLV lineages, the majority of human infections are caused by HTLV-1, which is conservatively estimated to be responsible for 5-10 million global human infections.11 HTLV-2, while less frequent, has also spread globally and like HTLV-1, is transmitted from mother to child through breast feeding, sexual contact and contaminated blood products during transfusion or injection drug use.11 HTLV-1 causes adult T-cell leukemia, HTLV-associated myelopathy/tropical spastic paraperesis and other inflammatory diseases in 2%-5% of infected persons.12,13 HTLV-2 is less pathogenic, but is increasingly associated with HTLV-associated myelopathy/tropical spastic paraperesis and some inflammatory diseases.14 HTLV-3 is much less frequent and has only been found in people in Cameroon who have direct contact with NHPs from which they were likely infected.6,7,8,15,16 No direct evidence of disease or secondary transmission of HTLV-3 has been reported.3,6,7,8

The fourth HTLV lineage, HTLV-4, was discovered in 2005 in a 48-year-old male hunter (1863LE) from rural Cameroon who reported hunting monkeys, chimpanzees, gorillas and other animals.15 The infection of individual 1863LE currently represents the only known human or simian virus in this lineage. As for HTLV-3, person-to-person transmission and disease have yet to be reported for HTLV-4, though both viruses possess genes and motifs believed to be associated with disease potential in HTLV-1 and HTLV-2.8,16,17,18 Molecular dating suggests that HTLV-4 is the oldest PTLV lineage, having originated some 200000 years ago (ya).16 The ancient age of the HTLV-4 lineage led to the hypothesis that HTLV-4 is a descendent of an ancestral PTLV that infected humans during their evolutionary history and frequent NHP contact in Africa and represents a rare strain circulating within people in the central African region.16 Alternatively, it has been hypothesized that HTLV-4 originated from a more recent zoonotic infection with a divergent STLV also present in NHPs cohabitating the forests of Cameroon.16 Identification of the simian origin of HTLV-4 would help determine the validity of each hypothesis.

While STLV has been found in at least 30 African and Asian NHPs, discovery of the simian counterpart of the recently identified divergent HTLV-4 lineage found in a hunter from Cameroon has been elusive, despite surveys of potential monkey reservoirs.19,20,21 In an attempt to discover how HTLV-4 emerged, and to shed light on its evolution and pandemic potential, we screened a large number of monkey and ape blood specimens from Cameroon using a recently developed HTLV-4-specific quantitative polymerase chain reaction (qPCR) assay.

wwwDOTnatureDOTcomSLASHemiSLASHjournalSLAS Hv3SLASHn1SLASHfullSLASHemi20147a.html
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replied February 12th, 2015
Extremely eHealthy
NatureCom: Emerging Microbes & Infections (2014) 3, e7;
I like this article because it pulls together all FOUR variants of HTLV:

Human infection with a plethora of simian retroviruses is well documented and has led to global pandemics, exemplified by the human immunodeficiency virus (HIV) and human T-lymphotropic virus (HTLV), and local outbreaks, as occurs with simian foamy virus (SFV), simian T-lymphotropic virus (STLV) and occasionally simian immunodeficiency virus (SIV).1,2,3 Given the demonstrated pandemic potential of retroviruses, a full understanding of the epidemiology and animal reservoirs of zoonotic primate retroviruses is of importance for monitoring and preventing future retrovirus pandemics.

The primate origin of these zoonotic infections has been identified by detailed epidemiological and phylogenetic analyses of both human and non-human primate (NHP) retroviruses. Through detailed examination of SIV infections in over 45 NHP species, it has been demonstrated that HIV-1 arose from multiple cross-species transmissions of SIVcpz and SIVgor from chimpanzees and gorillas, to people in west Central Africa.1,2 Similarly, HIV-2 in West Africa originated from multiple introductions of related SIVs from sooty mangabeys.1,2 Many studies have described ongoing zoonotic infection of primate workers, hunters and butchers with SFV from a variety of monkeys and apes and phylogenetic analysis showing that the co-evolution of SFV with NHPs has facilitated accurate identification of the simian origin of infection.3,4,5,6,7,8,9,10 Likewise, phylogenetic analysis has demonstrated that at least three of the four major HTLV lineages, HTLV-1, HTLV-2 and HTLV-3, originated from multiple introductions of their simian virus counterparts in monkeys and apes, STLV-1, STLV-2, and STLV-3, respectively.3,6,7,8 Thus, STLV and HTLV lineages are called primate T-lymphotropic viruses (PTLVs).

Of the four major HTLV lineages, the majority of human infections are caused by HTLV-1, which is conservatively estimated to be responsible for 5-10 million global human infections.11 HTLV-2, while less frequent, has also spread globally and like HTLV-1, is transmitted from mother to child through breast feeding, sexual contact and contaminated blood products during transfusion or injection drug use.11 HTLV-1 causes adult T-cell leukemia, HTLV-associated myelopathy/tropical spastic paraperesis and other inflammatory diseases in 2%-5% of infected persons.12,13 HTLV-2 is less pathogenic, but is increasingly associated with HTLV-associated myelopathy/tropical spastic paraperesis and some inflammatory diseases.14 HTLV-3 is much less frequent and has only been found in people in Cameroon who have direct contact with NHPs from which they were likely infected.6,7,8,15,16 No direct evidence of disease or secondary transmission of HTLV-3 has been reported.3,6,7,8

The fourth HTLV lineage, HTLV-4, was discovered in 2005 in a 48-year-old male hunter (1863LE) from rural Cameroon who reported hunting monkeys, chimpanzees, gorillas and other animals.15 The infection of individual 1863LE currently represents the only known human or simian virus in this lineage. As for HTLV-3, person-to-person transmission and disease have yet to be reported for HTLV-4, though both viruses possess genes and motifs believed to be associated with disease potential in HTLV-1 and HTLV-2.8,16,17,18 Molecular dating suggests that HTLV-4 is the oldest PTLV lineage, having originated some 200000 years ago (ya).16 The ancient age of the HTLV-4 lineage led to the hypothesis that HTLV-4 is a descendent of an ancestral PTLV that infected humans during their evolutionary history and frequent NHP contact in Africa and represents a rare strain circulating within people in the central African region.16 Alternatively, it has been hypothesized that HTLV-4 originated from a more recent zoonotic infection with a divergent STLV also present in NHPs cohabitating the forests of Cameroon.16 Identification of the simian origin of HTLV-4 would help determine the validity of each hypothesis.

While STLV has been found in at least 30 African and Asian NHPs, discovery of the simian counterpart of the recently identified divergent HTLV-4 lineage found in a hunter from Cameroon has been elusive, despite surveys of potential monkey reservoirs.19,20,21 In an attempt to discover how HTLV-4 emerged, and to shed light on its evolution and pandemic potential, we screened a large number of monkey and ape blood specimens from Cameroon using a recently developed HTLV-4-specific quantitative polymerase chain reaction (qPCR) assay.
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replied February 13th, 2015
Has anyone had a confirmed diagnosis of something else if negative for HIV?
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replied February 13th, 2015
Not sure where my original post went to so this may be a duplicate posting.

Well like a lot of others here it seems I have some condition that is not being picked up by any test I have taken so far. My huge list of symptoms began about 2 weeks after an unprotected sexual encounter and have continued for over 6 months. I have tested for several STIs (herpes, syphilis, heps, chlamydia, gonorrhea) and HIV out 6 months and everything is negative so far.

A little background:
> 9-10 days post encounter I had slight penile discharge and pain while urinating and pain in hips / buttocks. Given cipro to treat NSU / NGU by my GP.
> About 2 weeks post other symptoms started - some have remained for 6 months (skin rashes, pain) others have come and gone.

Developed sore throat, sinus issues, dry mouth, cough, burning eyes and skin (forehead) mainly, blurred vision, slightly swollen lymph nodes in neck (also in groin area - both confirmed by doctor), lymph node in neck was irritating (painful) more than swollen, diarrhea one time (with mucus), swelled throat and tongue. I have itchy skin especially scalp and face, pimple like bumps all over including knee caps, face itches and I have brown spots (like age spots) on cheeks. I am 52 but I did not have prior to my possible exposure. Developed stomach issues - noises, more gas, unusual bowel movements. Had 2 skin lesions removed - warts - one was over eye and another by my nose. I haven't had a wart since I was a child. Loss of appetite - never hungry anymore, pain in shoulders, elbows, hands and legs. Probably more symptoms I can't remember now...

Present...after 6 months I still have itchy rash on forehead, face, scalp and other places on body (shoulder, thighs), muscle and joint pain, muscle twitching all over especially in legs, cough, no appetite (but I force myself to eat so I have actually gained weight), continued fatigue and winded at simple activities.

I have had numerous HIV / STI tests - 3rd gen, 4th gen, RNA. All negative out 6 months. Many other tests looking for infections (blood culture, ANA, urinalysis) plus CBC - all normal so far.

I have been to 2 infectious disease docs - one confirmed at 3 months and told me not to come back for HIV, another said test to 6 months. I have seen 2 GPs - neither can find anything wrong and I have been to 2 dermatologists - everything I have is "normal" stuff.

Now my primary GP thinks I should see someone for arthritis, fibromyalgia, etc. And my favorite - a therapist because most of the symptoms are probably caused by anxiety and guilt.

But no one will listen when I tell them my wife (who knows nothing about the encounter) is having the SAME SYMPTOMS!! It can't be in my head (I was even called a hypochondriac by one of the doctors!) My wife had diarrhea one time, a skin lesion that looked like molluscum, joint and muscle pain (shoulders, elbows, hands). Dizziness and now complaining with leg pain and fatigue. She thinks she has arthritis.

We were both sick with a flu-like illness at Christmas - both extremely sick for several days - she experienced bad headaches and I could feel my entire lymph system (well probably not all) expand while I was sick - my body swelled all over quickly but went down after a short time - strangest thing I have ever experienced. This flu-like illness occurred 21 - 22 weeks post exposure. I have read a French report that a woman there had HIV and was tested out 6 months. She then got sick and ended up testing positive around 8 months. The report did not say whether she had a new exposure during that time. I have not had any new exposures.

I see that most in this forum are thinking it my be HTLV. I am not too sure. I think the HIV tests are not able to pick up my particular strain. Also I wanted to have an HTLV test but between 2014 and 2015 the test available through Labcorp went from $200 to $900!

If not HTLV are there any other suggestions or people who have found the cause of their symptoms??

Thanks.
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replied February 13th, 2015
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W,

It's not HIV, you can take dozens of HIV tests and they will all come back negative. Also the qualitative effects are different from HIV, instead of reduced T-cell counts, you will see increased T-cell counts, along with increased platelets, increased calcium, etc. Since HIV and HTLV share the P24 protein, that might be detected on the Western Blot test. And yes, the immunosuppression is another common symptom, and yes, I've dealt with those annoying nose warts on my face, and one of my girlfriends had them too, so annoying.

Best wishes.
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replied February 13th, 2015
Tony,

I am sure I am asking the same questions and they are answered somewhere on these many pages but hard to find...

1) How long have you experienced symptoms since your suspected exposure? Do they continue or go away at some point?

2) Have you tested for HTLV? Isn't there a new test available that was just approved last year? Is this like an RNA test instead of antibody test?

3) Are there any good web sites that explain HTLV in more detail. Most i have seen have little info or are confusing.

Thanks for your help!
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replied February 13th, 2015
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W,

Answers to your questions:

1. Experienced symptoms since my exposure over three years ago. I would say that the pain and symptoms are partially subsided because I have been taking over the counter vitamins and herbals specifically targeting HTLV. When I run out of these, the pain and symptoms return significantly, and severely.

2. Tested for HTLV as many times as I have for HIV. Yes, new companies have done a "me too" version of the standard HTLV antibody test, which doesn't work since there are no antibodies to detect. PCR testing (DNA or RNA), which is the golden rule for HIV and Hep, also doesn't work for HTLV. On a good day, you might be able to see some of the HTLV proteins on a Western Blot test - try that and let me know what you find. No offense, but testing positive for HTLV is of no value, since even if you test positive, you will be thrown out of your doctor's office and ignored by every medical professional in the world. With that in mind, do you really want to pursue testing? I just noticed that you were already slammed with the "anxiety" diagnosis, be careful with that, since my ID doctor had given the number to a psychiatrist, and at least one of us was already committed to a mental institution.

3. The most thorough explanations on HTLV are found in research articles, like the ones referenced in our forum and on the HTLVhelp face book page. They can be highly technical, but without reading through tons of these, we wouldn't have the knowledge we have accumulated on this forum about damage this virus is doing to us, or possible treatments, and God willing, cures.

May I ask what part of the world you are in?

Best wishes.
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replied February 13th, 2015
What type of vitamins, herbals are you taking? The pain is worse now and is starting to affect my sleep. I go to bed with pain, get up with pain, and now waking during the night in pain.

I agree. My GP had never heard of HTLV and my ID doctor made no reference when I suggested it to him. And yes, all of this is in my head! My GP said she knows of nothing else to do and suggested I get counseling even when she knows my wife has the same symptoms!

I am in the US.

Thanks.
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replied February 13th, 2015
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W,

I'm glad that you agree - so many people beat themselves up over getting correctly tested and diagnosed, only to realize that no one cares about this disease, or their suffering. Beware that many people with this disease end up being pain killer junkies, since the pain is significant, and the doctors would rather numb the pain than treat the cause. I am in the USA also - could you be a little more specific please? I am in NJ.

I've listed the vitamins and herbals before, but in general, anything that works against viruses in general or HTLV specifically you should take:

1. Curcumin / Tumeric - as much as you can take, start at 2g per day (4 x 500mg tablets), and work your way up. Works against HTLV as a demethylating agent.

2. Vitamin C - general antiviral, go as high as you can, I take 1,000 mg per day.

3. Lysine - general antiviral, take at least one a day.

4. Pau D'arco - general antiviral.

5. Olive leaf - general antiviral.

6. Elderberry - only available in liquid, but I heard it's great.

7. Multivitamin - of course.

8. Prosultiamine - a vitamin B6 derivative, hard to import into the USA, but works against HTLV.

9. Licorice Root - anti-HTLV.

10. Chinese Skullcap - anti-HTLV.

11. N-Acetyl-Cystine (sp).

12. Green tea - anti-HTLV.

13. Cepharanthine - anti-HTLV.

I also recommend a low carb diet and probiotics (especially yogurt) to fight yeast infections caused by immunosuppression.

Best wishes.
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replied February 13th, 2015
Thanks...that's quite a list! On other previous meds so I will have to check out the interactions to some of them.

The diet I need to work on...I eat too high carb...yogurt I eat!

I am in GA.
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replied February 14th, 2015
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Hi wtfisthis,

I'm sorry I have to say 'welcome'. Just wanted you to know that I feel you and I know what you're going thru.

This forum has been an invaluable source of hope and mutual help. So please follow TonyDewitt's advice.

I would also suggest taking vitamin D (similarly to HIV, HTLV causes your vitamin D to go down).

Vitamin B complex are crucial in solving the neurological symptoms.

Please fight. Don't give up. I promise, one day our disease will be recognized and we'll get adequate treatment. I can tell you, there's hope. Symptoms are manageable, if you take supplements constantly. It's been almost a year (March 7th, 2014) since my exposure and I'm starting to feel a bit better. Of course, I'm not healthy. But this thing can be slowed down till we get some better drugs.

In 2014 a HTLV task force was launched in the United States. Also, Japanese scientists have been working on this retrovirus for a long time. Don't lose the hope.

Best wishes to you and your wife. Nobody deserves such a terrible disease.
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replied February 14th, 2015
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Please let me add the following:

you can test for some of these diseases, just to be sure you haven't any of them: Mycoplasma, Lyme, HPV. Even Enteroviruses can cause similar symptoms, however I need to ask you something: was your encounter with a Latina? if yes, HTLV is a big possibility and the symptoms actually match with it.

Best
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replied February 14th, 2015
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J,

Alberto from Italy caught it from a Columbian, then infected his wife and unborn daughter. All three have walking problems, and Alberto went full on Mycosis Fungoides last year, after being infected only 7 years. This is worse than AIDS.

Best wishes.
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replied February 14th, 2015
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It's also a matter of luck. Of course, getting leukemia / lymphoma in 7 years would be something really bad for the all of us. But some people don't even get it, despite HTLV infection, or some others might get cancer after 30 years. The only thing we can do is fighting - with supplements and everything we have. Then, God knows what is going to happen. If a couple of years ago somebody would have told me that I would catch an incurable infectious disease, I would have laughed hard. Life is so unpredictable.

Sometimes, I just wish I could die in a car accident or in similar situations. You know, just to end this nightmare we're all living in - without being a suicidal. However, this forum and the ongoing research keep giving me the strength to go on with my life. And since I know that some other people are going thru the same situation, I try to remain hopeful and not lose my mind.

Blessings.
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replied February 14th, 2015
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J,

Please try to remain hopeful - the articles that you have brought to this forum have been a great source of inspiration for me. Also keep in mind that people with this disease have it worse than us - one guy I spoke to cant walk without a walker, another guy can't even control his bladder anymore. And Im talking about young, strong men being handicapped by this.

Best wishes.
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replied February 14th, 2015
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J,

Thanks for the kind words of recognition, not too long ago people on this forum wanted to burn me at the stake for my words.

Best wishes.
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