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Certain HIV positive, but negative tests (Page 105)

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February 23rd, 2014
Experienced User
Ws, glad ur feel I getter. How is everyone else feeling. I still feel the same. Sore back, phlegm nd sore eyes...

I haven't had any tests for 6months..
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replied March 12th, 2014
Hi guys. I'm in the same boat as you all. Started with a sexual experience, progressed to burning in the groin, tongue problems, severe dehydration, allergies, night sweats, rashes - I could write a book on what happened. Now, a bit further down the line I have joint problems/cracking joints, sore eyes and more.

Tony, it's VERY damaging for you to be spreading the message it's HTLV. It isn't and you are not a doctor.

I have spent months dealing with infectious disease experts and microbiologists, with some interesting theories. It's the same virus as the mysterious Chinese one and is yet to be identified. But apparently people are close, so we have to hold in there. If you want more information, PM me.
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replied March 22nd, 2014
Extremely eHealthy
OWilson,

Like everyone else here, you are entitled to your theory. I've posted enough scientific evidence to support my position, have you any evidence for yours? Of course not, you're just here to tell me that my idea is damaging, and then to claim to be working with experts. You sound like the same charlatan who claimed to be a doctor a few months back. While I'm not a doctor, neither are you. My opinion is just as valid as yours, if not more so because I have posted medical data to support my position, whereas you have not.

Nice try, have fun with your 'experts' LOL
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replied February 27th, 2014
Same problem
I am happy I found this forum. I had a body slide massage in a massage parlour in April 2013. Seven days later my symptoms started: lethargy, fatigue, dizziness, night sweats, rash on chest and back, mouth ulcer, dry eyes/mouth, blurred vision, photophobia, weight loss (14 pounds within 5 weeks), fat loss (around eye, cheeks, neck, shoulders, arms, legs, torso sides), fat gain (around stomach only), short-term memory loss, concentration problems. I feel terrible, like having mild flue all the time. The night sweats, rash, mouth ulcer disappeared after 1.5 months, but all other symptoms are still present. The weight loss stopped after 5 weeks, then I gained everything back, but the fat distribution in my body changed. I look like skinny guy with big belly. All my HIV and STD tests are negative even 10 months post-exposure.

Is here anyone who posted here 1-2 years ago and found out what it is in the meantime?
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replied February 27th, 2014
Extremely eHealthy
Peter,

You sound like a perfect example of the muscle wasting / fat gain that I've been describing. Like you, I've become a skinny guy with a big belly. I believe it's HTLV.

Best wishes.
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replied February 27th, 2014
Experienced User
Hi TonyDewitt,

how does htlv infect? do you think it is infect though oral sex, and the oral sex is protected?
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replied February 27th, 2014
Extremely eHealthy
Feng,

Both HIV and HTLV can be transmitted via oral sex - for decades, people have said they cannot, but even a gay celebrity on TheBody site said that he & the people in his HIV support group ONLY had oral sex, meaning oral sex was the way that they were infected. I infected at least two women via oral sex. While receiving oral sex is less riskier than giving oral sex, both are still viable ways of transmitting disease and both are well documented.

Best wishes.
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replied March 3rd, 2014
Experienced User
thanks TD, yes I think so.
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replied March 10th, 2014
Extremely eHealthy
Peter,

Are you saying that there was no sexual contact from your body slide massage?

Best wishes.
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replied February 27th, 2014
Experienced User
Peter. Where are you from?
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replied February 28th, 2014
I found three interesting cases online while I was searching for information the last 10 months. A guy whose test turned positive after 30 months! Another person whose test was positive after one year and a girl whose test became positive after 7 months. What is "funny" when they asked their doctors "why", they got the answer "We don't know." That's Dr's answer after these people did test after test and were forced to hear "It's all in your head." Wow. All of them were HIV positive with negative tests well after 3/6 month deadline. We all know it is rare, but it happens. Why should I believe I am HIV negative? My symptoms all point to HIV. I convinced my doctor to do CD4 count test for me 3 months ago. The result was 815 which doesn't prove anything. Now I want to ask my doctor again. I want to see if it goes down. If it's stable or goes up, I'll start to believe I am HIV negative.

Tony, when you suggest it may be HTLV I am not sure what is better to have: HIV or HTLV?? Should I be happy or cry? Good question. In any case it doesn't look good in any case. I was tested for HTLV and it was negative 5+ months post-exposure. I live in Canada. Ideally, I would prefer a virus which comes and goes.

I am happy I found this forum where I can express my opinion freely. Websites like POZ or MedHelp kick your ass once you start questioning your conclusive HIV test results. I am also surprised that nobody in this forum came up with any kind of explanation. All these people still suffer from the initial symptoms, but still with negative tests? Even after 2 years? Unbelievable. I believe some of us may suffer from HIV, some from a mysterious virus like HTLV or something else.

I agree with Tony. These viruses can be transmitted through oral sex. I infected a girl three days after I was infected because I had no symptoms and didn't know I was already infected. I only provided cunnilingus to her. Unfortunately I brushed my teeth 2 minutes before this to have a fresh smell. I probably had some blood in my mouth after brushing. Terrible mistake. This girl suffers from most of my symptoms, especially fatigue, dry eyes/mouth and with excessive hair loss on top of it. She doesn't feel dizzy or brain fog on the other hand. I don't know why some doctors spread this mistake that HIV can't be transmitted through oral sex. It's a complete lie.

I registered in undiagnosed diseases program. I think we all should do. The more people register the more seriously doctors will treat us instead of spreading another lie about us being psychos. If you are interested, I will share the link.
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replied March 3rd, 2014
Extremely eHealthy
Peter,

I agree that the psycho approach from doctors is rampant.

Best wishes.
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replied February 28th, 2014
I found three interesting cases online while I was searching for information the last 10 months. A guy whose test turned positive after 30 months! Another person whose test was positive after one year and a girl whose test became positive after 7 months. What is "funny" when they asked their doctors "why", they got the answer "We don't know." That's Dr's answer after these people did test after test and were forced to hear "It's all in your head." Wow. All of them were HIV positive with negative tests well after 3/6 month deadline. We all know it is rare, but it happens. Why should I believe I am HIV negative? My symptoms all point to HIV. I convinced my doctor to do CD4 count test for me 3 months ago. The result was 815 which doesn't prove anything. Now I want to ask my doctor again. I want to see if it goes down. If it's stable or goes up, I'll start to believe I am HIV negative.

Tony, when you suggest it may be HTLV I am not sure what is better to have: HIV or HTLV?? Should I be happy or cry? Good question. In any case it doesn't look good in any case. I was tested for HTLV and it was negative 5+ months post-exposure. I live in Canada. Ideally, I would prefer a virus which comes and goes.

I am happy I found this forum where I can express my opinion freely. Websites like POZ or MedHelp kick your ass once you start questioning your conclusive HIV test results. I am also surprised that nobody in this forum came up with any kind of explanation. All these people still suffer from the initial symptoms, but still with negative tests? Even after 2 years? Unbelievable. I believe some of us may suffer from HIV, some from a mysterious virus like HTLV or something else.

I agree with Tony. These viruses can be transmitted through oral sex. I infected a girl three days after I was infected because I had no symptoms and didn't know I was already infected. I only provided cunnilingus to her. Unfortunately I brushed my teeth 2 minutes before this to have a fresh smell. I probably had some blood in my mouth after brushing. Terrible mistake. This girl suffers from most of my symptoms, especially fatigue, dry eyes/mouth and with excessive hair loss on top of it. She doesn't feel dizzy or brain fog on the other hand. I don't know why some doctors spread this mistake that HIV can't be transmitted through oral sex. It's a complete lie.

I registered in undiagnosed diseases program. I think we all should do. The more people register the more seriously doctors will treat us instead of spreading another lie about us being psychos. If you are interested, I will share the link.
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replied March 3rd, 2014
Experienced User
give me the link, thanks.
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replied February 28th, 2014
I found three interesting cases online while I was searching for information the last 10 months. A guy whose test turned positive after 30 months! Another person whose test was positive after one year and a girl whose test became positive after 7 months. What is "funny" when they asked their doctors "why", they got the answer "We don't know." That's Dr's answer after these people did test after test and were forced to hear "It's all in your head." Wow. All of them were HIV positive with negative tests well after 3/6 month deadline. We all know it is rare, but it happens. Why should I believe I am HIV negative? My symptoms all point to HIV. I convinced my doctor to do CD4 count test for me 3 months ago. The result was 815 which doesn't prove anything. Now I want to ask my doctor again. I want to see if it goes down. If it's stable or goes up, I'll start to believe I am HIV negative.

Tony, when you suggest it may be HTLV I am not sure what is better to have: HIV or HTLV?? Should I be happy or cry? Good question. In any case it doesn't look good in any case. I was tested for HTLV and it was negative 5+ months post-exposure. I live in Canada. Ideally, I would prefer a virus which comes and goes.

I am happy I found this forum where I can express my opinion freely. Websites like POZ or MedHelp kick your ass once you start questioning your conclusive HIV test results. I am also surprised that nobody in this forum came up with any kind of explanation. All these people still suffer from the initial symptoms, but still with negative tests? Even after 2 years? Unbelievable. I believe some of us may suffer from HIV, some from a mysterious virus like HTLV or something else.

I agree with Tony. These viruses can be transmitted through oral sex. I infected a girl three days after I was infected because I had no symptoms and didn't know I was already infected. I only provided cunnilingus to her. Unfortunately I brushed my teeth 2 minutes before this to have a fresh smell. I probably had some blood in my mouth after brushing. Terrible mistake. This girl suffers from most of my symptoms, especially fatigue, dry eyes/mouth and with excessive hair loss on top of it. She doesn't feel dizzy or brain fog on the other hand. I don't know why some doctors spread this mistake that HIV can't be transmitted through oral sex. It's a complete lie.

I registered in undiagnosed diseases program. I think we all should do. The more people register the more seriously doctors will treat us instead of spreading another lie about us being psychos. If you are interested, I will share the link.
|
Did you find this post helpful?

replied February 28th, 2014
I found three interesting cases online while I was searching for information the last 10 months. A guy whose test turned positive after 30 months! Another person whose test was positive after one year and a girl whose test became positive after 7 months. What is "funny" when they asked their doctors "why", they got the answer "We don't know." That's Dr's answer after these people did test after test and were forced to hear "It's all in your head." Wow. All of them were HIV positive with negative tests well after 3/6 month deadline. We all know it is rare, but it happens. Why should I believe I am HIV negative? My symptoms all point to HIV. I convinced my doctor to do CD4 count test for me 3 months ago. The result was 815 which doesn't prove anything. Now I want to ask my doctor again. I want to see if it goes down. If it's stable or goes up, I'll start to believe I am HIV negative.

Tony, when you suggest it may be HTLV I am not sure what is better to have: HIV or HTLV?? Should I be happy or cry? Good question. In any case it doesn't look good in any case. I was tested for HTLV and it was negative 5+ months post-exposure. I live in Canada. Ideally, I would prefer a virus which comes and goes.
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replied March 4th, 2014
Experienced User
Post sources please.
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replied February 28th, 2014
Experienced User
Hi

Do you have a link to this statement ''gay celebrity on TheBody site said that he & the people in his HIV support group ONLY had oral sex
''

Thanks
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replied March 3rd, 2014
Extremely eHealthy
Mark Patton on Fighting the HIV Horror Show With Honesty:

If you look up the list of famous people living with HIV on Wikipedia, very few living actors come up. In fact, for an actor who has made only three films, Mark Patton is the most vocal actor living with HIV discussing his status. Of course, when one of those three movies is the cult classic A Nightmare on Elm Street 2: Freddy's Revenge, you don't have to make many more movies to remain well known.
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replied March 5th, 2014
Extremely eHealthy
M,

Was this what you were looking for?

Best wishes.
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replied March 6th, 2014
Experienced User
Thanks.
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replied March 6th, 2014
Extremely eHealthy
You're welcome Smile
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replied March 3rd, 2014
Extremely eHealthy
Mark Patton on Fighting the HIV Horror Show With Honesty:

If you look up the list of famous people living with HIV on Wikipedia, very few living actors come up. In fact, for an actor who has made only three films, Mark Patton is the most vocal actor living with HIV discussing his status. Of course, when one of those three movies is the cult classic A Nightmare on Elm Street 2: Freddy's Revenge, you don't have to make many more movies to remain well known.
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replied February 28th, 2014
Hi All,

Well I had my testing which I was told was going to be a western blot but the path lab ended up doing some hepatitis/hiv serology/ HTLV I/II antibody and I was pissed off and asked why?
The GP rang up the pathology lab doctor who did the test and was surprised the GP put me on the phone.
Apparently that is not the done thing in australia and the path doctor asked me if I was a doctor etc.
So basically I can't ask for a western blot because the protocol is EIA/CMIA first and then western blot for confirmation. He said HTLV is rare but I said 20 mil plus people are suffering from it and he replied in non endemic populations. I asked about HTLV 3&4 and he said we have spoken enough of this and I said fine and hung up.I at least commend the GP putting me onto the pathologist doctor but I was shat off from the word go.
The GP started arranging for me to see a psychologist but I said I'm not crazy and if I didn't have my symptoms (sore throat 2 yrs, itchiness, sore swollen neck, people say I've lost weight but still weigh the same etc) I'd say fair enough.
I believe I've come to an end to my testing because I can't see an answer to the crap I'm enduring. I'm over it completely.
All the best everyone,
Kind regards D
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replied March 3rd, 2014
Extremely eHealthy
D,

That's the clincher - ONLY in endemic populations! Doctors want us to believe that people from endemic populations don't have sexual contact with non-endemic populations, nor take planes to non-endemic areas, it's complete nonsense. HIV arrived in North America when a guy took a plane from Africa to Haiti, duh!

Best wishes.
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replied February 28th, 2014
Just a quick one,

I was at a fun park over Christmas break and this southern japanese family parked up next to us.
I didn't notice at first but when the wife got up she had classic signs of HAM and could hardly walk. I then noticed she had terrible clonus and couldn't control any expression on her face unless she was frowning. My wife sppoke to her and she sounded totally normal and with it. My mother who was visiting said she probably had a stroke but I knew exactly what it was and was staring the enemy in the face and it depressed the shite out of my thinking that will be me in the near future.
All the best
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replied March 4th, 2014
Extremely eHealthy
D,

This reminds me of something Ustas posted once, where he noticed someone he works with had very similar symptoms to the lady you described. There's no doubt that HTLV is in every country in the world, it's convincing doctors where the problem is.

Best wishes.
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replied March 7th, 2014
Experienced User
D and Tony,

That's what I was talking about. They will follow their profocts and keep guking with us. And if your Ab testing is clear no way you' ll get the Western blot. The only way to get it is sort of private lab or research of something. But as I said earlier I've got some guy who did western blot and I ' ll try contact him.
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replied March 7th, 2014
Extremely eHealthy
Western blot bands for HTLV 1 & 2
And if you get the Western Blot test, please keep the W.H.O. (World Health Organization) criteria for Western Blot positivity in mind, and insist on seeing the report for all protein bands tested for.

Doctor Loughran in Hershey, PA, while still not convinced that HTLV causes LGL Leukemia, wrote the following:

The frequent reactivity of patient sera to HTLV-I/II gag protein p24 and to env protein p21e, however, suggests that a deleted or variant form of HTLV-I/II may be associated with LGL leukemia.

And here's the U.S. government's criteria:

To be considered as seropositive in the U.S., a HTLV-I/II specimen should demonstrate immuno-reactivity to both a gag gene product (i.e., p19 and/or p24) and to an env gene product (gp46 and/or gp61/68 ). With development of a recombinant trans-membrane env protein, p21e, reactivity to p21e along with reactivity to gag protein(s) and env gp46 should be considered positive for HTLV-I/II infection. The relative intensity of reactivity with gag proteins p19 and p24 on WB can be used to differentiate HTLV-I from HTLV-II. For specimens with HTLV-I, the relative intensity for p19 is equal or greater than for p24, and for specimens with HTLV-II the intensity for p24 is greater than for p19.

I would say that knowing this ratio is an important tool for determining if you are infected with type 1 or 2 HTLV; of course it's possible to be infected with both.

Best wishes.
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replied March 8th, 2014
Tony and Jason,

It's really got me stumped at what I can do for here on in. They won't perform the Western blot for me and said it was too expensive and not necessary because the CMIA and EIA has a higher sensitivity and would of picked it up blah blah.
I'm over my sore throat, neck and feeling so itchy I can't sleep (it's 0130 and have to go to work in 4 hours). As a result getting extremely frustrated at work due to tiredness and stress.
Jason, I would definitely be keen to hear how the guy who did the western blot got on so at least I'd know if it was still worth pursuing. I would also be worried if I did it, it would turn up positive and then they'd probably do a PCR or something and return negative and still have doubt. Not sure what they do in that case?
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replied March 8th, 2014
Extremely eHealthy
D,

We are all in the same boat here, symptoms, testing, etc. You're relatively new to the forum, but if you scroll back and read everything on the past 105 pages, you'll see I recommended that we all get tested the same ways, so that we are approaching this disease with a united front. Regardless if the results from different tests were negative or positive, at least we'd be defining the profile of this disease as a group. The bad news is that no one followed my testing recommendations. I understand your frustration at the the many doctors' refusal to do anything for you, I've been there myself, they all do NOTHING and then bill me for 200 dollars, effectively they are causing me to stop pursuing this by financially killing me.

I've posted Doctor Loughran's observation that his leukemia patients are reactive to HTLV proteins p24 and p21e, which proves the "cohort testing" approach is so valid that even a leukemia doctor is doing it. Furthermore, the smoking gun is that a leukemia doctor even took the time to test all of his patients for HTLV proteins, isn't that an indictment in itself of what's going on? If your foot doctor tested all of his patients for hepatitis (and several came back positive), wouldn't that tell you that he knew something that he wasn't sharing publicly?

We all need to take the Western Blot test for HTLV 1 & 2 - if we match Doctor Loughran's cohort, we'll then have positive proof that we are afflicted with the same thing as his patients, and that we could be headed for LGL Leukemia as well.

Best wishes.

PS: I took the PCR test, it was negative.
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replied March 10th, 2014
Experienced User
Hey everyone.... Feeling a lot better. Though not 100%

I have cycled thru several drs - so far nothing.

Now testing for luekemea and lymphoma - otherwise may test 1 time per year and hope for best.

Not sure really what to do next.

I have noticed some red bumps - anyone else?
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replied March 10th, 2014
Extremely eHealthy
WS,

Hope it lasts for you, I'm in pain almost daily. Please consider taking the WB test.

Best wishes.
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replied March 11th, 2014
Experienced User
what is WB test? HIV WB test?
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replied March 17th, 2014
Extremely eHealthy
WB = Western Blot for HTLV.
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replied March 11th, 2014
Experienced User
I have red bumps too.
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replied March 17th, 2014
Experienced User
still nothing update, but feel more uncomfortable.
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replied March 22nd, 2014
Guys i keep testing negative for hiv but my exposure was 3 months ago unprotected sex i regret it i lost my job i have numbnesss and tingking dharp pains the docs r sayn i have anxiety.....i also losts 25 pounds anyone out tgere same problem
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replied March 22nd, 2014
Extremely eHealthy
LE,

Of course, we are all in the same boat as you, both in terms of symptoms and the anxiety diagnosis, and the wasting syndrome. While I'm sorry that you are going though this, I also want you to know that you are not alone.

Best wishes.
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replied March 22nd, 2014
So tiered of this htlv...
Please help me....
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replied March 22nd, 2014
Extremely eHealthy
Z,

Consider taking high doses of vitamin C and Curcumin, that will help fight the virus and lower inflammation.

Best wishes.
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replied March 25th, 2014
Is anyone having ear problem for this htlv
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replied March 25th, 2014
Extremely eHealthy
In the ear, sometimes ringing, sometimes bleeding.
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replied March 25th, 2014
Experienced User
I have constant ear ringing
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replied March 26th, 2014
Hi All,

Well it's taken me a long time and I eventually read over the last 105 pages; a lot of information.
I'm feeling quite depressed and in the process of separating from my wife and two children and it's all my fault.
I can't handle dragging them down anymore and need to find my own place while I continue hassling doctors and testing. I'm surprised I haven't lost my job to tell you the truth.
My throat and neck is killing me and I feel so bloody itchy.
I need to get a quantitive PCR and HTLV western blot and maybe flower cell smear but need to find a doctor that will allow me to do it.
I read one of the people on this forum did get a HTLV western blot and came up negative.
It will be 3 years since exposure as of august so hopefully I'll get a valid result. So tired but want to know whats going on.
All the best everyone
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replied March 26th, 2014
Extremely eHealthy
DNO,

Thanks for reading up on the last 105 pages, I think it's important for everyone to do that since the amount of information is vast. And yes, the full complement of testing (WB, PCR, FCS) is the right thing to do, but virtually no one has done that, but I thank you for doing it, because we won't be able to turn the corner on this disease until testing proves what we have. I know it's not easy because the doctors want to stop us, perhaps because they don't want to realize that there's something else out there killing people, since that's a slap to their medical expertise. And the people who aren't doctors, who are just simply afraid of what this is, they'll keep saying that we are wrong for pursuing this, or as I was told, "very damaging". I would argue that the damage is already done, and we are suffering everyday. I'm watching myself and the people I've given this to literally fall apart everyday, and of course all of you, my on-line friends. I'd rather die knowing what this is than have some "unknown cause" on my death certificate - imagine how many people have already died from this who were completely ignored by medical science.

We don't need a doctor to tell us that we are insane, we don't need a doctor to tell us nothing is wrong, we need a doctor to tell us that we are sick and then start taking medication for it. The best candidate so far is the newer version of Tenofovir (alafenamide fumarate), called TAF; it's a very small daily dose (10-25mg), and the side effects are minimal, especially compared to the symptoms of this disease. Like you, I have kids, and I don't want them growing up in this world of lies that we are stuck in, and I certainly don't want them to get this disease someday.

Please remember what Doctor Loughran posted about some of the proteins of HTLV showing up on the Western Blot tests for his LG leukemia patients, so demand to see the actual test results instead of letting some 'expert' interpret for you.

Your exposure anniversary will be three years in August, mine will be three years in November, so you've actually had this longer than me.

Best wishes.
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replied March 27th, 2014
Experienced User
Hi TD,

the newer version of Tenofovir (alafenamide fumarate), called TAF is a HIV drug. is the disease HIV? or similar HIV?
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replied March 27th, 2014
Extremely eHealthy
Feng,

Certainly HTLV and HIV are in the same family of viruses (i.e. retroviruses). While it was an easy assumption that HIV drugs would work against HTLV, research has shown that not to be the case unfortunately. However, research has shown that tenofovir does work against other viruses, such as Hepatitis B and HTLV - in that sense it is a wonder drug, since it was only developed for use against HIV. Previously, the barrier to using tenofovir was side effects (e.g. kidney problems), but the new formulation of tenofovir (alafenamide fumarate) does not have those problems, and works effectively at much lower dosages (i.e. 10mg, which is 30 times less the old dosage).

Best wishes.
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