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Certain HIV positive, but negative tests (Page 97)

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September 19th, 2013
Experienced User
Hi guys! Hope you are doing better these days.
For me, things aren't that good at all. I'm feeling pain in my right side for the past couple weeks now. Went to the doctor and he said there are some bacteria in my system and he prescribe me this drug..Enterogermina. There was no test done to confirm that, so i'm not sure if he is correct.

Guys, i'm at a higher risk than most of you, the Caribbean. High HTLV rate.

Whatever is in me is sexually transmitted, i am certain of that.

Somebody in this forum said that they feel like killing the girl that gave him the virus. I feel like doing the same because i asked the girl if she was clean and she said YES.
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replied September 19th, 2013
Extremely eHealthy
Ustas,

I'm happy to hear from you, and I hope you will be feeling better soon. Is your pain located where your liver would be? That's where I get pain occasionally. You're right about the Carribean's higher HTLV rate and this being sexually transmitted - we all know exactly how and from whom we got this.

I understand your thoughts of anger towards the person who infected you, believe me I've been there too, I even made the actual threat in writing, which I realize now was stupid of me.

No one's going to figure this out for us, we need to figure this out for ourselves. I'm trying to find medicine to treat this illness, with the latest being prosultiamine - supposedly it reduces HTLV without toxicity. Toxicity is a very important issue because we don't want to make ourselves sicker trying to kill this disease. I had previously mentioned Xeljanz, and now that I see the TV ads for it they are saying it's a big cancer risk, so we can't do that. JB wanted to start taking TDF (the Hep-B & HIV drug), but I talked him out of it because it's bad on the kidneys. I'm narrowing the list to the following drugs:

1. Prosultiamine - normally used to address vitamin B1 deficiency, shown to reduce HTLV in Japanese patients.

2. TAF - the next generation of TDF, normally used to treat Hep-B and HIV, much less toxic than TDF, currently in phase 2 clinical trials. Research has shown it reduces HTLV.

3. Azacytidine - normally used to treat MDS, the oral version is currently in clinical trials. A patient in Greece was cured using it.

I'm keeping an eye on HTLV treatment discoveries and developments in the hope that we can start taking these drugs in the near future before our condition worsens.

Best wishes.
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replied September 19th, 2013
Experienced User
Since i leant of HTLV, i wonder if that is the virus my co-worker has. He use to walk as strong as i use to but now he can hardly walk. He stayed one place for most part of the day because he can barely move around. Things are getting worst everyday. I am afraid to ask him about it. He has children and i have not seen anything happening to them or the mother/s.
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replied September 19th, 2013
Extremely eHealthy
I also came across someone who is showing symptoms - I never met her in person but she is a model online, and now she's complaining to everyone that she has the same symptoms as us for months. She's gorgeous and her name is Andrea, and I wouldn't even know how to begin to tell her about this illness - it would be like "Hi Andrea, there's a disease out there that the doctors don't know about and don't care about, and there's no treatment for it, and I think that's what you have". Based on that insane conversation, she would probably tell me to go to hell. Considering that she has symptoms too, I'm realizing that the world is in big trouble, it's not just us, there's many more people with this than just the people on this forum.

Best wishes.
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replied September 19th, 2013
Experienced User
2 seperate comments about 2 seperate actions.. Pcr from doctor, Oahu.. Talk to CDC girl here on my island...
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replied September 19th, 2013
Experienced User
So we have to accept that everyone have HTLV not HIV in this forum. Why they ignore this HTLV?? It is similar to HIV but why all the doctors ignore it i dont understand. Why they just look only on HIV?? I never know about HTLV at all until i found this forum and found Tony.
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replied September 20th, 2013
Extremely eHealthy
Hassan,

Exactly - those are the questions that I ask myself every morning when I wake up. And I myself didn't find out about this disease until I was sick myself.

Best wishes.
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replied September 20th, 2013
Experienced User
I had another HIV rapid test today at 5 year 6 month after my possible exposure. This virus is killing me both phsically and mentally. My HIV test is negative but my symptoms is still there. I read a lot there is no such symptoms for HTLV Tony so what this could still it can be HIV a late HIV strains??
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replied September 20th, 2013
Extremely eHealthy
Hassan,

Since you refuse to let go of HIV, I am going to take this one step further - the people behind covering this up want you to think that this is HIV so that they wont have to be held responsible for hiding HTLV. So by you continuing to believe this is HIV, you are helping their efforts to sweep HTLV under the rug and cover their rear ends. There's nothing more that anyone can tell you after more than FIVE years of being sick, YOU DO NOT HAVE HIV. Find a rat, inject it with your blood, and then have it tested for both HTLV & HIV - you will see antibodies to HTLV but not for HIV.

Best wishes.
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replied September 20th, 2013
Experienced User
Hi TonyDewitt,
I have same symptoms with you. Are you sure it is a HLTV? As far as I know,HLTV should have no symptoms, and in my country(China), lots of people who have same symptoms as us have done HLTV test, they said the test result were negative. In a word, Are you sure it is a HTLV? if yes, I will go to test to double confirm it. Anyone, who would like to contact me, can send email to me. Thanks a lot.
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replied September 20th, 2013
Extremely eHealthy
Feng,

I am sure that this is HTLV, but there is no way to prove it - the testing does not work.

Best wishes.
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replied September 20th, 2013
Experienced User
Hi Feng, we are not certain if it is really HTLV, but the possibility exist. Sorry to know you are going through the ill feelings as we do. Hope you will feel better soon.


Hassan, if after six years of testing for HIV, you still don't believe in your test results, then you leave me to think that you want to be HIV positive. Give that my friend that you don't have it. Just be strong my friend.
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replied September 20th, 2013
Experienced User
Tony, the pain is in the Liver area. Ultrasound shows that there are two nodules on liver that they said is not the cause of the pain. Not really feeling it that much now it it was really bad the other day.
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replied September 20th, 2013
Extremely eHealthy
Ustas,

Yes, the pain is in the liver area. I don't want to jinx myself since I haven't experienced it in a while, but the pain does come & go. Also your liver enzymes should be elevated.

Best wishes.
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replied September 20th, 2013
Experienced User
Just to remind the old members and to inform the new members here about my symptoms.

I had unprotected sex with a girl of promiscuous lifestyle. This was because I wasn't getting enough stimulation with condom on and just wanted to satisfy her. Before I did that, I asked her if she was clean and she said YES!

About 3-5 days after, I felt chronic abdominal pain. A number of symptoms followed after that. Here is a list of them.......
1- Abdominal Pain (mainly on the left)
2- Abdominal gurgles
3- Joint Pain
4- Nausea
5- Headache (on the left side)
6- Blurred vision
7- Red eyes
8- Skin rash
9- Teeth marks on tongue
10- Burning skin sensation
11- Itchy skin
12- Lose Stool
13- Throat problems- cold, painful lymph nodes, difficulty swallowing.
14- Pain in foot
15- Grey hair on face
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replied September 23rd, 2013
Experienced User
Hi Ustas...

Are you still having all of these issues?

Can you elaborate on your foot pain? Left or right? bottom or top?

How long ago were you exposed?
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replied September 20th, 2013
Experienced User
Hi Ustas,

except list 15, I have all the symptoms you list. I had a
protected oral sex, but I also got the virus. Though I don't know what is it. BTW, I go to many hospital do STD, hIV, physical check test, all of them are negative. and all the specialist say it is caused by my anxiety. but I'm sure it is not caused by anxiety. actually I don't think it is HIV or HLTV. because in my country, many of people do HIV and HLTV test. it should be a unknown virus. Can you ask government to help us?
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replied September 20th, 2013
Extremely eHealthy
Feng,

I share the same symptoms as you & Ustas, and yes, we have all received the "anxiety" diagnosis from doctors, and we all know that this is not caused by anxiety. Some of us have been sick for years and we are certainly not imagining this illness.

Best wishes.
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replied September 21st, 2013
Experienced User
Tony this is not htlv or hiv. This is what China call the fear of aids virus. As the ladies that u got this from I can bet they all slept directly or indirectly with people from Asia. This thing can be passed from hand shake. Touch your organ and shake someone thy get a sore throat in less than a week. But contact through sex symptoms progress faster. Its spread through saliva sweat breastfeeding and seminal fluids. If u have a weak imune system a handshake gives you the virus. Eat yourguts garlic and Pawpaw and pineapples and lots of water and rest and muscles building exercises the symptoms starts going away. Vermin d and c also exentle. And use condom with partner as infection extends the symptoms. For the thrush brush twice and use a mouth wash inbetween.
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replied September 21st, 2013
Experienced User
Tony this is not htlv or hiv. This is what China call the fear of aids virus. Ask the ladies that u got this from I can bet they all slept directly or indirectly with people from Asia. This thing can be passed from hand shake. Touch your organ and shake someone thy get a sore throat in less than a week. But contact through sex symptoms progress faster. Its spread through saliva sweat breastfeeding and seminal fluids. If u have a weak imune system a handshake gives you the virus. Eat yourguts garlic and Pawpaw and pineapples and lots of water and rest and muscles building exercises the symptoms starts going away. Vermin d and c also exentle. And use condom with partner as reinfection extends the symptoms. For the thrush brush twice and use a mouth wash inbetween.
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replied September 21st, 2013
Experienced User
And forget about this virus receiving any attention. It won't cause its easy to avoid wash your hands, pepper hygiene even washing ur organ with water stops the virus. Most people that got this shaved a few hours or days to their exposure.
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replied September 21st, 2013
Experienced User
Hi johnpeters:

I'm from China. in our country, lots of people have these symptoms. and They went to BeiJing many times to look for help. but the government doesn't admit its virus. the most important thing is that I feel my body get worse, but I have no plan or idea to resolve it. Can you go to your government to seek help? I can collect my country's guys information(how to get the virus and their symptoms), and donate money to support doctors who can investigate the virus.
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replied September 21st, 2013
Experienced User
Hi johnpeters:

I'm from China. in our country, lots of people have these symptoms. and They went to BeiJing many times to look for help. but the government doesn't admit its virus. the most important thing is that I feel my body get worse, but I have no plan or idea to resolve it. Can you go to your government to seek help? I can collect my country's guys information(how to get the virus and their symptoms), and donate money to support doctors who can investigate the virus.
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replied September 21st, 2013
Experienced User
Feng. I agree that there is an unknown virus. I have it. I know it's not anxiety. People are probably already dying of it. Might be cancer or pneumonia or some other opportunistic infection but because they don't test positive for HIV, no one ever really knows why they are dying. This is worse than my worst nightmare. I hope you are doing better than I am!
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replied September 21st, 2013
Experienced User
This forum is going crazy like us. Doctors still playing stupid with this hiv like virus.
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replied September 21st, 2013
Experienced User
This forum is going crazy like us. Doctors still playing stupid with this hiv like virus.
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replied September 21st, 2013
Experienced User
Number 16 would be - yellow spots in Palm.
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replied September 22nd, 2013
Extremely eHealthy
Ustas,

Same here, but since you & I have different colored skin, my palm stops appear slightly differently.
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replied September 21st, 2013
Experienced User
Hi all guys,

I'm from China. in our country, lots of people have these symptoms. and They went to BeiJing many times to look for help. but the government doesn't admit its virus. the most important thing is that I feel my body get worse, but I have no plan or idea to resolve it. Can you go to your government to seek help? I can collect my country's guys information(how to get the virus and their symptoms), and donate money to support doctors who can investigate the virus. if you have some plan or idea, can send email to me to discuss it. Thanks for your help.
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replied September 21st, 2013
Experienced User
Hi all guys,

now I have no plan or idea in the future. I get my body worse day after day.Can someone go to your government to look for some help? I can collect my country's people's information and launch a donation to doctors who can help us to resolve this issue. Thanks a lot. If you have some advice, please send email to me.
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replied September 21st, 2013
Experienced User
Hi everyone,

My (probably) last HIV1/2 Ag/Ab Combo assay came back today: almost 15 months from exposure. Again, this is to confirm Tony's position - it's not HIV1/2.
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Users who thank jasonbourne for this post: TonyDewitt 

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replied September 22nd, 2013
Extremely eHealthy
JB,

Thank you very much - we all can test for HIV everyday & we will never be positive by AB, WB, nor PCR testing. Furthermore, our T-cell count will not ever go lower, if anything our counts will go higher, which is solid and undeniable proof that this is not HIV, since HIV destroys T-cell counts. If you can't find a free testing center for HIV, I will buy an HIV test kit off of the shelf in the store and mail it to any of you, they are retailing for about $40.

The reason that I am putting my money where my mouth is that as a group we need to let go of HIV permanently - I understand that the newbies to this forum are still freaking out and need to mentally stabilize - I was there myself, totally freaking out, crying every 5 minutes, etc. But November 7th will be two years that I got infected, and believe me there's a point where crying doesn't help, nor freaking out. While I will never forgive the people who made me so miserable as to do what I did to get infected, I realize that I need to work to cure this disease because I would never want my children to ever get this and not have a way to treat this - that would be a far worse nightmare for me. We have to find a non-violent way to bring attention to this disease, that's why I started the HTLVhelp web site and face book page. I've narrowed the testing down to the rat antibody test, and the treatment down to Prosultiamine / TAF / Azacytidine. Prosultiamine has been around for SIXTY years, Azacytidine for FIFTY years, and TAF is a reformulated version of TDF, an existing anti-retroviral. I am absolutely confident that we can beat this thing, and also I am absolutely certain that if we don't do anything to treat it, we will die from various disorders such as HAM (yes HAM can kill), ATL (death within a few months), MF, and ANY other version of leukemia and lymphoma that you can think of, or Sepsis (like Doctor Bob). Even worse, the doctors will still be telling us on our death bed that this is not caused by a virus, and we obviously know better (e.g. Effie on the HTLVhelp face book page was told by her doctors that her B-cell lymphoma was not caused by her HTLV positive test).

I'm not trying to scare anyone, but Doctor Bob died suddenly, he was fine & practicing for a charity concert, then he got some back pain, then he went to the hospital & was dead within two hours. Even though he was rushed to the hospital, there wasn't anything that could be done by the doctors to save him. If a top HIV doctor who is married to a top HIV doctor can suddenly drop dead from this, then all of us can, it's that simple. And just like any of us, Doctor Bob's death wasn't labelled as death by HTLV, and in his case because of his high visibility everyone wanted answers to why he died and none were offered - that's not the way I want to die.

Best wishes.
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replied September 22nd, 2013
Experienced User
Hi TonyDewitt
thanks for your help on this virus. I'm sure it is not a hiv. and I'm sure we can beat it. thanks for your help again. I'm from China, we can fight together. if you need help, please contact me. I can organize our country's people
give you the best effort. Please send email to me. Thanks again.
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replied September 22nd, 2013
Experienced User
Tony

I test neg for HIV but I have something. My symptoms line up with HIV I think so it's hard for me to get off of that.

What are the symptoms of HTLV

Thanks
Ken
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replied September 22nd, 2013
Experienced User
Ken,

Do you have your CD4 count?
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replied September 22nd, 2013
Experienced User
Hi Jason
1200 in June but I think the disease is affecting my neurological system and skipping my immune system (for now).
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replied September 23rd, 2013
Extremely eHealthy
And a count of 1200 means that you are not experiencing low counts associated with HIV, but are experiencing high counts associated with HTLV.
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replied September 22nd, 2013
Extremely eHealthy
Lots of new people are asking questions that have been answered multiple times - I'm going to politely ask that people with questions that have been answered take the time to page back to the previous pages on this forum. Certainly very specific questions make sense, but really general questions like "what are the symptoms" should be left up to the reader.

Best wishes.
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replied September 22nd, 2013
Experienced User
Hi Tony. Just scrolled up. I have blurred vision, headache, difficulty swallowing from that list. I have many more that are HIV only like confusion, receding gums, painful, tingling forearms, change in gait, stiff jaw, and more wonderful symptoms.

What are your thoughts?

Thanks
Ken
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replied September 22nd, 2013
Extremely eHealthy
I am experiencing the same - when I suggested that you read the forum, I meant all 97 pages, not just scrolling up on this page.
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replied September 22nd, 2013
Experienced User
If you have my symptoms why do you think you have HTLV and not a new strain of HIV? You have symptoms not listed under HTLV!
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replied September 22nd, 2013
Experienced User
I believe there's a strain of HIV that's not being detected and everyone thinking they have this other thing, HTLV are climbing up the wrong tree.

Compare your symptoms and you'll realize this. The tests aren't picking this strain up!
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replied September 22nd, 2013
Extremely eHealthy
Yeah, we stopped talking about HIV, and aren't bringing it up anymore.

Best wishes.
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replied September 22nd, 2013
Experienced User
But what makes you sure you have HTLV? I googled it and didn't see that many symptoms that I had in common and you say you have the same symptoms as I do. Why are you convinced of this? What symptoms in particular? I can give you a list of HIV symptoms that you will find published.
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replied September 22nd, 2013
Experienced User
anyone suffer from constant one leg nerve pain? (Burning, crawling, pulling sensation)
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replied September 22nd, 2013
Extremely eHealthy
Yes, in my left leg.
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replied September 23rd, 2013
Experienced User
Human RNA “Rumor” Viruses: the Search for Novel Human Retroviruses in Chronic Disease

C ecile Voisset,1 Robin A. Weiss,2 and David J. Griffiths3*

CONCLUDING REMARKS
As we have discussed above, the characterization of putative novel human retroviruses other than HIV and HTLV has led to a number of dead ends and produced little direct evidence of their involvement in disease. Advances in PCR and other molecular detection methods have greatly enhanced our ability to detect new infections but have not led to the identification of a confirmed retroviral pathogen. Nonetheless, there is still great interest in novel human retroviruses, as exemplified by recent papers on XMRV (125, 497). Given the level of skep- ticism in the field, new claims of retroviral infection require a substantial level of proof to convince virologists, and the ex- perimental design must be sufficiently robust to withstand the most critical review. In particular, direct molecular evidence is much stronger than circumstantial data. The two reports on XMRV provide excellent examples of the way forward, al- though even here, independent confirmation of the presence of the virus in prostate cancer is still required.
Despite the experimental difficulties, the chronic diseases linked with retroviruses (Table 2) cause significant morbidity and mortality, so it is important to thoroughly evaluate any candidate pathogens even if there is a high chance of failure. The notion that the cause of any of these complex diseases is duetoasingleinfectiousetiologicalagentismo stlikelyna ve, but the confirmation of a role for a virus (retroviral or other) would have far-reaching benefits for the diagnosis and treat- ment of what are frequently devastating conditions, and the search is therefore warranted. In the past 25 years, a high number of genuine novel human viruses have been discovered (250), and it appears highly likely that there are others still to be identified, some of which may be retroviruses. New genome- based molecular techniques are likely to increase the number of viruses discovered in human tissues and may circumvent the difficulties associated with identifying retroviruses by PCR. Ul- timately, however, improved criteria for determining causation need to be defined.
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replied September 23rd, 2013
Experienced User
We are all dead, this thing is killing me and my family its affecting my brain. I have to kill the lady i just have to
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replied September 23rd, 2013
Experienced User
Lets decide today on a way forward, all my toe nails are infected by Fungi and also i can not breath in the night, my son has huge pain. how can someone be so wicked to pass this to someone? how can they do that?
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replied September 23rd, 2013
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As we have discussed above, the characterization of putative novel human retroviruses other than HIV and HTLV has led to a number of dead ends and produced little direct evidence of their involvement in disease. Advances in PCR and other molecular detection methods have greatly enhanced our ability to detect new infections but have not led to the identification of a confirmed retroviral pathogen.
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replied September 23rd, 2013
Extremely eHealthy
That's a convoluted way of saying that if the disease causing problem isn't HIV, then it's HTLV, which I agree with.
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replied September 23rd, 2013
Extremely eHealthy
The current testing doesn't work, since the virus survives by lurking in cells, not overproducing itself like HIV, but rather overproducing T-cells. The rat test from Israel IS the conclusive test - someday a test kit could be developed from that approach, but for now we need to inject a rat with our blood & see if the rat develops HTLV antibodies to our infected blood.

Best wishes.
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replied September 23rd, 2013
Experienced User
I don't see what the diference is between getting an unprotected sex partner tested and a rat injected with blood tested.
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replied September 23rd, 2013
Extremely eHealthy
DW,

When the doctors in Israel developed the rat test, they were trying to solve the mystery of what was making the patient sick, so they cleverly used a rat to find out that the patient had HTLV.

You can coyly say that you don't see the difference between have a sex partner tested, but in reality we usually can't order our sex partners tested. Your situation is bizarre and unique, and most doctors (and sex partners) would frown on you having a sex partner tested instead of dealing with the problem yourself. Speaking of doctors, I am still waiting for the name of the HTLV doctor you were in contact with, I don't think it's fair of you to withhold this information.

Thanks.
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replied September 23rd, 2013
Experienced User
Tony,
i gave you the Facebook page address where you could get all that info just like i told you i would.
And i myself was never in contact with the doctors you are talking about.
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replied September 23rd, 2013
Experienced User
Is your T cells High? why not get your t cells reading. why are you so hooked up on HTLV. it takes nothing to diagnose this virus in brazil. PCR test is enough at 3 months. this is a bacteria and we better start looking at that. infect i now know i did not get this from the lady i got it from sharing a room with someone that has it. he is down right sick now almost dieing
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replied September 23rd, 2013
Extremely eHealthy
Nope, they can't diagnose it in Brazil, nor Argentina, they are coming up with people who are showing symptoms of HTLV without testing positive even after multiple tests.
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replied September 23rd, 2013
Extremely eHealthy
JP,

Killing anyone is not going to help.
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replied September 23rd, 2013
Experienced User
The way forward is finding out what is causing the symptoms and getting diagnosed so that you could be treated accordingly.
We need to be extra careful.
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replied September 23rd, 2013
Extremely eHealthy
DW,

We will never find out what is causing the symptoms - there's too many symptoms. And what does "we need to be extra careful" mean? Sounds like you're living in the world of do nothing instead of do something - you need to snap out of that train of thought pal. The rest of us have real problems and want real solutions and are looking for answers. I suggest, that you either lead, follow, or get out of the way.

Best wishes.
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replied September 23rd, 2013
Experienced User
Tony, this message was a response to JP's comment,


Lets decide today on a way forward, all my toe nails are infected by Fungi and also i can not breath in the night, my son has huge pain. how can someone be so wicked to pass this to someone? how can they do that?

JP,
How can they do that?,
"We need to be extra careful"
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