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Certain HIV positive, but negative tests (Page 101)

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October 20th, 2013
Did the forum max out?
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replied October 20th, 2013
Extremely eHealthy
No.
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replied October 20th, 2013
Experienced User
Don't think anyone is posting anymore...

Everyone seems to be giving up
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replied October 20th, 2013
Experienced User
I know i put myself at a HEAVY RISK, I really can't beleive all I got was HPV, but since all the test been coming back non reactive then I'm left with no choice but to give up.
It's so hard to just let it go, cause it's too hard too beleive. But i find my self letting go little by little. I'm really really close to giving up.
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replied October 20th, 2013
Extremely eHealthy
DW,

You have NO symptoms, while the rest of us are suffering terribly. When you have a chance please send me the name of that HTLV doctor that you mentioned.

Best wishes.
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replied October 22nd, 2013
Experienced User
Tony,
I said before how you could get that info, i myself don't know the doctors name and phone numbers.
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replied October 20th, 2013
Experienced User
Maybe we can start a private facebook group so we don't lose each other?
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replied October 20th, 2013
Extremely eHealthy
I've already taken care of that - HTLVhelp on face book and HTLVhelp on the web.

Best wishes.
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replied October 20th, 2013
Experienced User
I still hve symptoms but docs can't find anything wrong
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replied October 20th, 2013
Extremely eHealthy
Same with me and my sister.
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replied October 21st, 2013
Experienced User
Tony. I don't remember you mentioning your sister. How did she get HTLV?
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replied October 22nd, 2013
Extremely eHealthy
The same way the rest of us did.
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replied October 22nd, 2013
Experienced User
you and your sister both got it from sexual contact? The odds seem low for that to happen. Are you sure it's not just her and not you and you are speaking for her to help her?
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replied October 21st, 2013
Experienced User
I still think there's a good chance there is a new strain of HIV. Not HTLV. It makes sense to me. Does anyone else think this is possible. A strain that is slipping through the tests?
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replied October 22nd, 2013
Extremely eHealthy
No.
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replied October 22nd, 2013
Experienced User
I agree with Tony on this one.
I don't think so either.
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replied October 23rd, 2013
Experienced User
There are endless people that have symptoms and experts are telling them it's psychological. We know it's not psychological - we have enough common sense to know the difference. It sounds to me like there is something that tests aren't catching. Think about it. And if that gets discovered, there will be many many people that have been told they are nuts in line to finally prove they aren't. Why doesn't anyone else see what I'm saying?
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replied October 23rd, 2013
Extremely eHealthy
TRW,

You're new to this forum - we've been having these discussions long before you showed up (go back and read all of the forum entries from page one). We've already discussed people who were unfairly labeled insane for being actually physically sick and put away for the wrong reason - DFrank for example. Also consider the thousands of people who have gone to HIV forums, only to be turn away and called insane.

And yes, when the correct test is developed that will conclusively prove what we have (such as the test where doctors in Israel injected a patient's blood into a rat to see that rat then developed HTLV antibodies), that day will be the exoneration for everyone who was called insane and/or institutionalized over simply being physically ill.

Before I got sick two years ago, I had read all of the forums (TheBody, POZ, MedHelp, and here) for several years (16 years to exact), and learned much about illnesses and how they are handled. When I got sick and was handled the same way, I wasn't surprised, but was surprised that this disease existed and is being actively and intentionally ignored.

Best wishes.
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replied October 24th, 2013
Experienced User
OK Tony but I think these many people could have HIV that the tests don't pick up. Too many common symptoms. With so many people complaining, I don't see why this isn't considered!
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replied October 24th, 2013
Extremely eHealthy
Because we'd all be be suffering with LOW T-cell counts, instead of HIGH T-cell counts - you need to get this through your head. Again, way before you showed up, we all agreed that this is not HIV, so hearing you say that it is HIV again and again is really getting old. Go back and read the entire forum from page 1.

Best wishes.
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replied October 24th, 2013
Experienced User
You can have normal range T-cell count and have HIV. Where have you heard otherwise?
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replied October 24th, 2013
Extremely eHealthy
HIV depleted T-cells, where have you heard otherwise?
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replied October 24th, 2013
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Testwrong
It hurts me to see someone one worried about something they shouldn't even be worried about.
What makes you think this is a new strain?
And where could have this new strain developed and how long ago did this new strain arise?

If this was a new strain you wouldn't be the only one who has it so it would have been discovered by now.

On top of that HIV causes acute HIV symptoms and then it's followed by an asymptomatic phase where there is no symptoms at all.
This means that if you been experiencing symptoms for more than a month, you could be sure it's not HIV.
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replied October 24th, 2013
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DW,

While I understand that you are trying to help TRW see the flaws in his logic, the bottom line is that the primary effect that HIV has on the body is measurable, i.e. T-cell counts go down. On the contrary, HTLV raises T-cell counts, so just based on high T-cell test results, one can rule out HIV. Just to totally cement the point in, when I went to my infectious disease doctor about my concerns regarding HIV, the first thing she did was a T-cell count, which showed a high count, which enabled her to conclude that I do not have HIV.

Since TRW is very late to this forum, he needs to read up on all of the people on this forum who used to think that they had HIV, but who also finally accepted that they do not have HIV, whether through the passing of years that they've been sick or repeated testing.

However, TRW isn't totally wrong - there is something out there that we all have and it is making thousands of people sick, and it is being totally ignored - that part of his platform is absolutely accurate. If he would focus on this part and allow himself to accept that a different disease is to blame, he would have much more credibility than someone who keeps saying that he has undetectable HIV - I recall a guy on the POZ forum who kept saying the same thing, and he was locked up in an insane asylum for that.

Best wishes.
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replied October 24th, 2013
Experienced User
Tony. When there are no other alternatives to be found and the only one that fits is HIV, I have no choice but to say it's HIV. By the way, I was admitted in a psych ward like that guy from POZ. I was there for 18 days. I got out by saying maybe I don't have HIV.

I have many symptoms. There is nothing else I can have. That is why I insist on it. And that guy from POZ and many others have it too. Not detectable at this time.
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replied October 24th, 2013
Extremely eHealthy
Well it doesn't fit and there are alternatives, you're just not willing to accept that your T-cell count isn't decreasing, so you don't have HIV. You're talking about blaming HIV for ten years, when most people on this forum gave that up after one year. You can keep saying it's HIV over and over again, but that's not going to ever pan out. Sure there are many people on the internet who are ill, but HIV is not the only disease in the world. No one talks about viruses such as HTLV, JC, Parvo, EBV, HHV6 and HHV8, but those are real diseases too and they also make people sick. Should we just ignore all of those diseases (and others) to only focus on HIV so that you will feel validated? Of course not. Go back to page one and read the entire forum, then you will see that no one thinks this is HIV anymore. I don't want to sound rude, but you are not using logic and aren't making sense.

Best wishes.
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replied October 24th, 2013
Experienced User
Tony. There is no one disorder with all my symptoms. It's pretty hard to shake the HIV thing which includes all my symptoms. Lots of people saying this. Lots of people that test positive don't go on meds until their CD4 falls which means they have normal CD4 until that point. I'm telling you, what I am saying is logical. If you felt my symptoms you would know it is.
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replied October 24th, 2013
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It's logical that there would be new strains and that the next new one would have to start somewhere, sometime. Why not now. Why not with all the people saying what I'm saying won't one of us or a group of us get so sick that experts have to take notice. There really isn't anything illogical about what I'm saying. What's illogical? Again, people can have normal CD4 for a long time and be positive. I understand why outsiders would think it unlikely but those of us that are experiencing it, and have read everything in site know it is very likely. HTLV I'm not getting that. Very few symptoms listed and no one takes it seriously. I think what I'm saying makes much more sense than HTLV because of the symptoms. These are HIV symptoms!
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replied October 28th, 2013
Extremely eHealthy
Everyone on this forum has been there, it's time for you to let HIV go, it's the logical thing to do.
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replied October 24th, 2013
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Hi DW
I am pretty sure I got this about 10 years ago. I wasn't tested until 6mo ago though. I started having symptoms in that timeframe.

If it was a new strain there could be many people in my shoes or in the asymptomatic stage. All of us not knowing we have it because the tests are negative. I see many people complaining of symptoms but with negative tests all over the internet.

It makes total sense to me that a new strain is possible based on this
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replied October 24th, 2013
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Testwrong
Me replying about this is a waste of time and it's frustrating, but I'm doing it in hope that you realize that you don't have HIV.
I understand what you are going based on and it has no foundation, it ridiculousness that you are going based on symptoms that don't match in regards to timeframe associated with HIV.

You said this all started 10 years ago for you, this means that if it were HIV you would most likely have AIDS by now or at the very least since you have symptoms you CD4 count/% would be low by now.
If you got this 10 years ago, this would mean that it would be spreading back then, meaning a lot of people would be dying of opportunistic infections caused by HIV, We are not seeing this happening.
I hope this makes sense to you, wether it does or doesn't, I'm not going to worry about the slight posibility of an unknown HIV strain, because i know its near to impossible and in your situation completely impossible.
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replied October 24th, 2013
Experienced User
DW. There is a misunderstanding. I caught it 10 years ago but never even thought to get tested until 6 months ago. I never in a million years thought I had HIV all those years. That timeframe is perfectly normal from what I'm reading.
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replied October 24th, 2013
Experienced User
There can be many like me and others that got it more recently. There can be many, many, with this strain. There is nothing illogical about that. And CD4 can be normal for quite awhile prior to medication being administered. Please don't ignore this possibility. If I give you my symptoms you would agree it's either psychological or it's HIV. And I'm here to say it is NOT psychological. Blurred vision, receding gums... physical things. Please don't ignore what I'm saying and realize the logic behind it. The internet is full of people like me with people calling them crazy. Now that isn't logical!
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replied October 24th, 2013
Extremely eHealthy
It's still illogical - I have the same symptoms as you, but I don't have HIV? You totally ignored what I said about considering other diseases (HTLV, JC, Parvo, EBV, HHV6, HHV8), not to mention declining CD4 counts. Sorry, but you need to take your head out of your rear end.

Best wishes.
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replied October 24th, 2013
Hey Tony do you have Oral thrush?
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replied October 24th, 2013
Experienced User
Testwrong,
Have you heard of something referred to by some as non- hiv aids, they are diagnosed by a declining cd4 although they test negative for hiv, this is considered extremely rare, but as rare as it is, it has been defined, this is proof that hiv surveillance is reliable.

People with non-HIV aids ussually recover that being proof that their temporary syndrome is not caused by HIV. Along with the proof of virus isolation techniques by research labs investigating.

I didn't misunderstood you,
If your symptoms are caused by hiv that you caught 10 years ago then your cd4 count would be low.

I understand that some people take 10 years or longer to develop aids but that is not considered "as a timeframe that is perfectly normal," they are considered long term non-progressers.

It's hard not to ignor you since you are also ignoring everything I'm telling you.
It's kind of stupid that I'm talking to you about this.

You just started thinking that you might of got hiv all of a sudden and you are letting it consume you.
I'm getting tired of explaining to you why you don't have hiv, there is nothing that convinces me to beleive there is an unknown hiv like you say.

I hope you understand.

If you want to keep discussing this with me, you should list everything you tested for, you don't need to post the results if you don't want to.
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replied October 25th, 2013
Experienced User
DW. I have never heard of non-HIV AIDS but it is very interesting to me.

Good little article:
http://www.agoracosmopolitan.com/news/heal th/2013/05/04/5859.html

I've had the standard tests for STDs. I was negative for everything but HSV1 and HSV2. I have no symptoms of those so I was shocked by that. I had neurological exams, psychological exams, MRIs of my head, EKG of my head (probes all over my head). Everything negative.

Now you have me really thinking about this non-HIV Aids. It makes sense in my case don't you think?
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replied October 25th, 2013
Experienced User
Where do I find a list of symptoms for HTLV, JC, Parvo, EBV, HHV6, HHV8. Without that, I have no way of knowing if I have any chance of having one of these.
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replied October 25th, 2013
Experienced User
DW & TD

Could it be that I have chronic fatigue syndrome? Or maybe non-HIV Aids which might be the same thing?

The symptoms are very close to mine!
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replied October 25th, 2013
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Testwrong
As i said before if you want me to keep discussing this with you, please list the types of test you had.
If you want to see the symptoms HTLV could cause please take a look at "HTLV Registry" on Facebook.
There are people talking about their experience and Richard Engnath explains how he was diagnosed with HTLV2.
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replied October 25th, 2013
Experienced User
DW I did but my response is being reviewed to make sure it is according to the rules. I tried to add a link. Maybe that's why.

I think chronic fatigue CFS is very possible. Maybe non HIV AIDS, I don't know. People say CFS = non HIV Aids.

But my symptoms really line up with CFS
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replied October 25th, 2013
Extremely eHealthy
Well CFS is associated with an up-regulated immune system (which causes the fatigue), and AIDS is associated with a down regulated immune system (which allows opportunistic infections). I am glad that you are considering other causes than HIV. I appreciate everyone giving HIV the recognition it deserves, but once you're out of the three month window, you're conclusively HIV negative and you need to consider other causes for your suffering.

Best wishes.
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replied October 25th, 2013
Experienced User
Up regulated meaning higher CD4?
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replied October 25th, 2013
Extremely eHealthy
Yes.
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replied October 25th, 2013
Extremely eHealthy
Yes.
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replied October 25th, 2013
Experienced User
Up regulated meaning higher CD4?
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replied October 25th, 2013
Experienced User
Testwrong,
I will give you my opinion when i see the tests you have taken, but for now you need to understand that the term "non-hiv aids" is incorrect the correct term is idiopathic CD lymphocytopenia, this means that it is diagnoseby a low cd4 count.
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replied October 25th, 2013
Experienced User
DW. I had ELISA 3 times all neg. CD4 was 1200 about 5 months ago. I had MRI of my head. No cancer or any other issues there. I had I think an EKG on my head where they put electrodes everywhere. No issues. I had a neurological and psychological exam. Nothing found. I've had the basic tests from the doctor that includes lyme. Tested for hepetitis, all the STDs. Only thing positive is HSV1 and HSV2 and I have no symptoms. Maybe it's CFS right now but will turn into idiopathic CD lymphocytopnia if my CD4 goes down? Thanks for your help and I hope you are alright.
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replied October 25th, 2013
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TRW,

Your CD4 count of 1200 is very similar to mine (over 1100). None of us on this forum are infected with HIV - we're too far past the window period and we have high CD4 counts.

Best wishes
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replied October 25th, 2013
Experienced User
Maybe you have CFS Tony. Nothing to do with sex
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replied October 25th, 2013
Extremely eHealthy
Regardless, neither of us have HIV.
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replied October 26th, 2013
Experienced User
Testwrong,
U said that the only abnormal test you had was HSV1&2, you also said you don't have symptoms from that, i think you could possibly be wrong there, hsv has been know to cause symptoms other than the ussuall sore outbreaks, it's also been seen to cause very uncomfortable symptoms like the ones you are experiencing, also it sometimes causes, swollen lymphnodes, fevers, muscle aches.
But in my opinion, since you went 10 years with no symptoms and all of a sudden you have symptoms now, the most probable reason for your symptoms are due to something not sexually related.
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replied October 27th, 2013
Experienced User
Hello everyone - I am sorry I have been away. Just trying to get thru the days. I am now past 1 year. Currently, chest and testicle pain mostly - some eye and headaches.

Anyway I am going to get one more round of std tests just to say that I have tested past 1 year. After seeing 4 other drs - none which would refer me to an infectious disease dr. My insurance company did. The nurse was very very helpful and is getting me into a teaching university id dr. I believe they will have more capability to discuss the issues and potential viruses.

My top contenders

hsv 2, tested negative.
Hiv , negative past 7 months
Enterovirus - coxsackie - negative but know to be difficult test to confirm
Htlv - tony is right this virus also fits
Syphillis - negative 4 month
Tb - no testing yet

Whatever this is - it has to be able to transmit via saliva
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replied October 27th, 2013
Experienced User
Does your gums ever bleed? If 2 people have that couldn't it be tramsimtted by kissing
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replied October 27th, 2013
Extremely eHealthy
WS,

Thank you for your update, I look forward to talking to you on the phone again.

Best wishes.
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replied October 28th, 2013
Experienced User
Ws,

What makes you think this has to be transmitted through saliva?
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replied October 28th, 2013
Experienced User
I got this via oral sex and others on this site have also - if it were hiv or a blood borne illness I would not be sick. This is how I believe it is saliva based.

Although - I must admit, my confidence level on my status, is not 100%.

Actually something Tony just wrote is very helpful.

We have had symptoms for months, some years - meaning this is associated with a wacky and continuos immune response relieving some anxiety around potential for this to be delayed hiv.
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replied October 28th, 2013
Extremely eHealthy
WS,

Were you receiving or giving oral?

Best wishes.
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replied October 28th, 2013
Experienced User
I received oral from a girl. I might have also gotten her saliva in my eye about 15 minutes after. I actually think this is what got me vs the oral sex but I will never know. About a month after I felt like I had something in my eye - twitching, flu, joint pain, nausea, loss of appetite, testicle pain -

Anyway I do not think hiv could last that long outside the body or is active enough in saliva to infect. Although who knows.

After thinking I was going to beat this thing - My symptoms are back.
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replied October 28th, 2013
Extremely eHealthy
WS,

Thanks - I know that I've infected women by having them receive oral from me.

Best wishes.
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replied October 30th, 2013
Experienced User
Hi wyomingscared,

I also received oral from a girl. and I have an protect
oral, but now I have all the symptoms you have.
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replied October 28th, 2013
Experienced User
Just an update on me. Yesterday my eye was really red and still the same. Anyone else have really red eyes? So far it's only one eye but the other is slightly red...
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replied October 28th, 2013
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I am very surprised to see how chronic fatigue symptoms match mine. I discovered this because Definitely Worried brought up non-HIV Aids. They say chronic fatigue syndrome is non-HIV Aids. The thing is I have a 1200 CD4 so that wouldn't make sense I am told but it does make sense that I might have CFS. Have any of you considered that for yourselves? HIV symptoms with a negative HIV test...maybe?
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replied October 28th, 2013
Extremely eHealthy
That's what I was trying to make you see when I mentioned your CD4's being HIGH.

Best wishes.
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replied October 28th, 2013
Experienced User
Yes... Very red and swollen - for a year now. a bit jaundous if you pull your eye lid - also veins are more prevelent in the eye.

Forgot to mention the menegitis like symptoms - sore neck, headache etc
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replied October 28th, 2013
Extremely eHealthy
Same here, especially the sore neck & headaches, sometime so bad that I can't sleep.
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replied October 28th, 2013
Experienced User
Yes... I have considered CFS - I was on Phoenix rising site - also read about john chia and enteroviruses.

Right now - it is an unknown chronic virus causing continued symptoms due to either post viral syndrome -hyperactive immune after killing the original virus or continued immune response - from a virus still present.
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replied October 28th, 2013
Extremely eHealthy
Exactly - you're 'hyperactive' is the same as my 'up-regulated'. What I like about the Phoenix Rising site is that they are open to discussing anything, including HTLV.

Best wishes.
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replied October 30th, 2013
Experienced User
Hi TonyDewitt,

it is not a htlv, two of my friends have test htlv after one year, and htlv is negative.

BTW, what's "CFS". I think i should do a test for it. but I don't know what is it. Thanks a lot.
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replied October 30th, 2013
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Feng,

It is HTLV, the test for it is not reliable, even Sadowsky on TheBody site said it can take "years" to test positive.

CFS = Chronic Fatigue Syndrome"
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replied October 30th, 2013
Hi All,
I have to react... I have read all posts from beginning.
Mainly I agree with TonyDewitt. I have same way of thinking.
But:
Creating of antibody depends on your immune system. OK, it can take years in extreme caches. (As Sadowski sad 10 years ago. But usually it happen to patients with broken immune system)
Therefore you can use PCR method which directly looking for virus...
If you have symptoms, this virus should be detectable already in you blood. I know that PCR is less sensitive than elisa or blot. But if you have "infected" friends and if they will do test HTLV by PCR method, it should cover this statistic and measurement fault. You could be sure that it is not HTLV, but something else. Sad

Please, try to test also your friends.

P.S. I have same symptoms and almost same list of test already done with no findings)
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replied October 30th, 2013
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Tomas,

All of the labs & doctors I spoke to swore that every virus causes an antibody response, yet we don't have detectable antibodies. And everyone says that PCR is even a better test, but people are sick with HTLV symptoms without a positive PCR nor antibody test. For example, Alberto from Italy had symptoms for two years without a positive antibody test, and finally tested postive via PCR.

The most compelling example was when Israeli doctors injected the blood of a patient into a rat, then the rat developed HTLV antibodies. This proved that HTLV can be elusive enough to avoid antibody development and standard PCR (the patient was PCR positive for TAX primers). Therefore we need a doctor who is willing to perform the rat injection test for all of us.

Best wishes.
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replied October 30th, 2013
Experienced User
Feng,
CFS is a syndrome and you can't test for. It's caused by different reasons, HTLV could cause CFS, but there are people with CFS that don't have HTLV.
Tomas has a good way of looking at this. I don't think it's far from the truth.
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replied October 30th, 2013
Experienced User
So why has everyone started having symptoms after sexual contact? It has to be sexually related.. ?
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replied October 30th, 2013
Extremely eHealthy
Yes, it is sexually transmitted, no matter what you want to call it.

Best wishes.
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replied October 31st, 2013
OK Tony, I know the Albertos story.
Main question is:
Did Alberto perform also PCR tests during these two years? Or did only one PCR test after 24 months when previous antibody test were negative?

Regarding TAX:
Tax was used on blood of patients with latent infection. How old this story is? Again you are looking for Tax primes or antibodys, not for virus. How can you treat virus, if you are not able to measure virus load... Therefore antibodys are only cheap and fast way how to test people.

Regarding patient in Greece:
How they know that patient was cured, that doctors are not able to measure virus load? How they can prove it?

My opinion is that if you will test majority of your friend by PCR and one of them will be positive, you are apparently positive too. If no one, you have something else then HTLV. Whatever it is...

Did your problems started with high fever? Viruses typically start with high fever.

Tomas
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replied October 31st, 2013
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Tomas,
Htlv type 2 doesn't necessarily start with fever in fact i heard the opposite, someone that has htlv2 told me he never got fever, his first symptoms was swollen lymph-nodes and swollen joints both with pain, they are both swollen even today, but i asked about fever, he said no, he never felt fever from htlv2.
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replied October 31st, 2013
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Tomas,

Frankly it doesn't matter how old this story is - the patient in Israel didn't have a positive antibody test, but when his blood was injected into a rat, the rat developed HTLV antibodies - it's that simple. And yes, this same patient only tested positive via for PCR on TAX primers, but he tested negative on standard PCR. The lesson of the story is that using animals (rats, rabbits, etc) as a test vector is more accurate than the current HTLV testing, so that's what we should be doing too.

Alberto STILL does not test positive on the antibody test, even 7 years after being infected, which proves yet again that the HTLV test is not conclusive. Now he has Mycosis Fungoides, and he hasn't responded to any of my emails in months. I hope that he isn't dead.

The patient in Greece is not experiencing ANY symptoms, whereas I'm in constant pain, wasting, floaters, skin disorders, etc. I want all of my symptoms to end, and if taking Azacytidine accomplishes that, then that's what I want. I don't care how bad the side effects are, I want this virus out of my body, this thing is killing me. The patient was as old as Doctor Bob was when Doctor Bob died, and the article chronicles the patient's severe symptoms.

A few of the people on this forum have my number (Scared, WS, DW, MGFCG), and certainly if you don't hear from me, try to reach me to determine if I am dead, and if I am dead, please report it to the other members of this forum. After Doctor Bob started to get back pains and fever, he was dead within two hours, even though he & his spouse are both HIV specialists, and even though he was immediately rushed to the hospital. Doctor Bob was 59, and since Im older than the rest of you guys, I'm thinking that Im the closer to dying Doctor Bob's death than the rest of you.

I understand that you are trying to apply the classic viral infection model to every illness, including ours. Most doctors feel that this model applies to everything, but certainly it does not apply to HTLV - it infects and reproduces on a low level, slowly wrecking the immune system. The fact that the testing can't find it simply means that we need to come up with better tests, like the rat injection test, which is simple and scientific, i.e. your blood goes into the rat, the rat develops HTLV antibodies, bingo.

Not all infections require a fever to start, again you are being typical, not universal.

Best wishes.
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replied November 1st, 2013
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Tony, we all pray that you find the help that you need. I know exactly how you feel. I feel my days are numbered too. It's a terrible existence.
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Users who thank testsRwrong for this post: TonyDewitt 

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replied October 31st, 2013
Experienced User
I hope I have CFS. Never thought I'd say that but it's better than the alternative - HIV! I pray with all my heart I have CFS
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replied October 31st, 2013
Extremely eHealthy
HTLV.
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replied November 1st, 2013
Experienced User
Hi Tony. Why would you jump to that conclusion?
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replied November 1st, 2013
Extremely eHealthy
Why would you not - look at how many people are open to that possibility (Ustas, WS, etc). Just because doctors refuse to talk about it doesn't mean that it doesn't exist. Just because it's not part of the standard STD testing doesn't mean that it doesn't exist.

Best wishes.
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replied November 1st, 2013
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Tony. That doesn't answer my question. I'm asking why of all the possibilities do you zoom in on HTLV form me? I haven't been able to link that to me based on what I've read on the internet so if you can point me to where you are getting your information I'd very much appreciate it. Thanks
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replied November 1st, 2013
HI, I have read this forum for a long time, as I also was 100% sure I have had contracted hiv. I had 2 rounds of unproteded vaginal and oral sex with a girl I met at a bar. I since got balanitis candiasis. I have ezcema on my palms now, never ever had this in my life prior to this incidence. developed a condition what is called keratolysis exfoliativa (focal palmar). white coated swollen tongue with teethmarks at border. Horrible night sweats, dry persistant cough, extreme weight loss went from 75kg to 68kg but I am back to normal now. major dandruff, hairloss,Extreme headaches, palmar erythema (red marks stick on my palms for many seconds when I press my fingers on them). I know this is not all in my head, because my girlfriend is having very identical symptoms, and she doesnt know that I cheated on here. I didnt even go to testing because I cheated on my girlfriend and thought I had infected her as well. Well its been 17 months since my exposure, and I have done a series of testing. I will post my testing results here:
ENDOCRINOLOGY
Hep B surface Ag (HBsAg) Negative
Hep.C Core Antigen <3.0 fmol/L
< 3.0 fmol/L HCV Core Antigen Not Detected
>= 3.0 fmol/L HCV Core Antigen Detected
HIV 1 & 2 / P24 Ag screen Not detected
Combination testing of HIV-1 and -2 antibodies
and HIV p24 antigen, allows for earlier
detection of HIV infection.
Cytomegalovirus Ab(IgG) 454.8 AU/ml
< 6.0 AU/mL is considered non-reactive
>=6.0 AU/mL is considered reactive
Please note change in units due to change in
methodology effective 12/09/11
Cytomegalovirus Ab(IgM) Negative
Comment Result suggestive of previous CMV infection.
HTLV I & II Negative
SPECIAL PATHOLOGY
GASTROINTESTINAL PATHOGENS: ENTERIC ORGANISM RAPID DETECTION
Specimen : Stool .
Adenovirus 40/41 Not detected
Rotavirus A Not detected
Norovirus GI/GII Not detected
C. difficile toxin A/B gene Not detected
Salmonella Not detected
Shigella Not detected
Campylobacter jejuni/coli/lari Not detected
Escherichia coli O157 Not detected
Enterotoxigenic E.coli (ETEC) Not detected
Yersinia enterocolitica Not detected
Vibro cholerae Not detected
Shiga-like toxin producing -
E.coli (STEC) stx1/stx2 Not detected
Giardia lamblia Not detected
Cryptosporidium Not detected
Entamoeba histolytica Not detected
Assay information: The xTAG Gastrointestinal Pathogen Panel is a
qualitative multiplex PCR test intended for the
simultaneous detection of nucleic acids from
multiple gastroenteritis causing viruses,
parasites and bacteria. Performed on Luminex 200.
Note: The C. difficile assay targets DNA
sequences encoding toxin A/B.
Non-toxigenic strains will not be detected.

Also would like to share my opinion, I am pretty sure that we dont have htlv or hiv!!!!
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replied November 1st, 2013
IMMUNOLOGY
SYPHILIS CONFIRMATION .
VDRL Negative
TPHA Negative
FTA Negative
Sample Type: Urine
C. trachomatis (NAAT)Urine Negative
N. gonorrhoeae(NAAT) Urine Negative

MICROBIOLOGY
Urethral swab .
Microscopy No organisms seen
NO WBCs seen
Culture ++ mixed skin flora
NO N.gonorrhoeae or Candida species isolated
Mycoplasma/Ureaplasma Negative
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replied November 1st, 2013
Experienced User
What do u think it is?

So u have tested negative for everything?

Where abouts are u from?
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replied November 1st, 2013
I am from scandinavia, I got this from a girl from croatia. Well we dont have neither hiv or htlv as these tests are conclusive after 6 months! I have white coated with teethmarks at the border which indicates either active or previous infection with either virus or bacteria and also indicates enlarged or ruptured spleen. My current symptoms are mostly headaches and neurological symptoms, muscle twitching over all my body. The closest guess would be either lyme or mycoplasma bacteria, candida. But I dont think I can have Lyme disease as this is not transmitted sexually....so who knows......Many on this forum have not even had unprotecded sex which means no risc for hiv or htlv. Also if you get an EBV and CMV simultanously can give crasy symtoms....
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replied November 1st, 2013
Erythema multiform mild is also pretty nasty, but resolves in matter of months in most cases....
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replied November 4th, 2013
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Tilt,

Begging your pardon, but everyone on this forum got sick via sex.

Best wishes.
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replied November 1st, 2013
my tests did indicate prior exposure to cmv infection. So CMV is responible to some of my symptoms.....
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replied November 1st, 2013
Experienced User
tilt, You would have to have a compromised immune system for CMV to affect you.
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replied November 1st, 2013
Extremely eHealthy
Tilt,

While I agree with you that it's not HIV, HTLV is a definite possibility, even Sadowsky on the TheBody site stated that it could take YEARS for HTLV to test antibody positive, and Alberto from Italy still doesn't have HTLV antibodies 7 years after being infected (but tests positive on HTLV PCR).

TRW,

CMV & EBV are in the same family, I was infected with EBV when I was 29 and it was horrible, lasted for at lesat 18 months, and had nothing to do with a compromised immune system. Both CMV & EBV are in the category of mononucleosis, but Parvo, HHV6&8, JC, and HTLV can cause similar malaise.

Best wishes.
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replied November 1st, 2013
TRW, I will agree with Tony when it comes to HIV and CMW, I am 35 and when you get infected with these as an adult, it will hit much harder than if you say as an teenager or younger. I have asked hiv specialist about HTLV, and they say tests after 2010 have a very high sensitivity rate almost 100% just as HIV has a very high sensitivity rate. I am gooing to believe these, as I am not gooing to obsess about something that my tests show I am negativ. I am waiting for other results as well. there is a big chance that I have reiters syndrom, maybe triggered by CMV and HPV infection simultaniously. I have eye irritation, hurtful joints, and rash palms. So this is a very likely scenario for me, however it doesnt explain my headaches and neurological symptoms......
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replied November 2nd, 2013
Experienced User
I hear you tilt but it's not easy to give up on HIV when the symptoms persist. I hope you are right and I hope you find what is wrong with you quickly. Better yet I hope it just goes away. I'm hoping that for myself because I don't know what else to do!
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replied November 4th, 2013
Hi tilt,
Reiters syndrome is common connected with HLA-B27 positive. Try to test it, may it moves you forward.

Hi Tony,
i still didn't get answer on my previous question. I would like to ask you if you know when Alberto was firstly tested for HTLV PCR? As far as I know, Alberto was sick for 7 years with last two yeas of symptoms when he did PCR test. Am i right?

Thank you for your answers,
take care guys.
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replied November 4th, 2013
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Right, he only was able to get the PCR test for HTLV after two years of arguing with the doctors, and that test was positive. So in summary, he never tested positive for HTLV antibodies for 7 years and only tested positive via PCR after two years, which refutes what Tilt's doctor saying about almost 100 percent sensitivity on antibody tests - every doctor I spoke with believe that the HTLV antibody test is accurate, yet they ask me what the seroconversion window is - this is both sad and hilarious because for a doctor to be asking me what the antibody window is for HTLV is a pathetic JOKE.

The low level production of HTLV does not trigger the immune system to produce antibodies, or if antibodies are made, they are made on such a small scale that they can't be picked up by standard HTLV antibody tests. Meanwhile we are all suffering with similar symptoms. Overstressed was telling me how much hair he has lost, and his father just passed away at an old age with a full head of hair. This disease is killing all of us and if we don't start taking prosultiamine & TAF (tenofovir alafenamide fumarate).

Best wishes.
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replied November 4th, 2013
Hi, just posting the rest of my results. I also have latant EBV infection. So I have probably got the combo of EBV and CMV from this girl, this will explain the erythema multiform rash I had, and my wife and two daughters. erythema multiform is 90% linked with herpes and mycoplasma. I have read many forums, where this combo has resulted in swollen tongue with teethmarks at border and headaches of size og mount everest. They are both latent now, but I have head the worst headaches ever!
Tony, you are totally free to believe we have HTLV, but we just share different opinions on this matter:


IMMUNOLOGY
Mycoplasma pneumoniae IgG 1.91 AU/ml <10 = Negative
Mycoplasma pneumoniae IgM 5.4 Index <10 = Negative
No evidence of recent infection
Please note new units of reporting and reference
range due to change in methodology.04/11/2013
Epstein-Barr virus screen .
EBNA IgG antibody * 265 U/ml (< 5 U/ml Negative)
EBV Early Ag ab.(IgG) <5 U/ml (<10 U/ml Negative)
EBV VCA ab.(IgM) <10 U/ml (<20 U/ml Negative)
Comment Results suggestive of past ( latent )
EBV infection.
HERPES SIMPLEX ANTIBODIES .
H.S.V. I (IgG) * 42.6 Index
H.S.V. II (IgG) <0.500 Index
COMMENT : Serological evidence of HSV infection at some time
Negative : <0.9 Index
Equivocal: 0.9 - 1.1 Index
Positive : >1.1 Index
Please note: Methodology changed 12/08/2013.
B.burgdorferi IgG <5.0 AU/ml Positive = >15
B.burgdorferi IgM Negative
Comment In early disease, up to 50% of patients may be
antibody negative. Specific IgG/IgM antibody
start to become detectable 3-6 weeks after onset
of erythema. Advise second test if indicated.

here is an explanation from ncbi about HTLV:
Laboratory testing for Human T-lymphotropic Virus type 1 and 2 (HTLV-1 and -2) infections has become routine in blood transfusion, tissue transplantation and clinical diagnoses in many countries worldwide. Screening is usually based on the detection of antibodies to HTLV-1 and/ or -2. The number of commercially available assays is limited, and among them, ELISA tests based on microtiter format are most commonly used. Recently, the new rHTLV-I/II assay (Abbott Laboratories, Abbott Park, IL) was released; this assay was developed for an automatic large-scale screening platform. This assay was evaluated using pre-characterized serum panels and routine samples from the clinical laboratory. The sensitivity was 100% for HTLV-1 and -2 (99/99 and 42/42, respectively, including one sample that was dually reactive, HTLV-1 + 2). To test assay specificity, panels of blood donor sera, specimens from patients with autoimmune diseases and some viral infections were used. False-reactive samples from previous HTLV diagnoses were also included. With these panels, the specificity was 99.4% (619/623). However, the four false-reactive samples all belonged to the group of samples that were previously considered as false-reactive for HTLV-antibodies. All other samples were negative by the rHTLV-I/II assay, and thus 100% specificity was obtained. The 1,412 samples tested in the clinic by this assay in routine use were all negative (100% specificity). Taken together, the overall specificity was 99.8%. The assay was sensitive, specific and appropriate for the large-scale screening of samples for HTLV-1/2 antibodies.

take care...
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replied November 4th, 2013
@Tony
Do you know where to get pcr test for HTLV? I am 17 months past exposure, but I likely will test again for HTLV at 24months?
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replied November 4th, 2013
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Tilt,

The PCR test for HTLV is offered by most major labs - you might have to get a doctor to order it, but the labs do perform this test. My two year anniversary is coming up on November 7th.

Best wishes.
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replied November 4th, 2013
Experienced User
Tony. That doesn't answer my question. I'm asking why of all the possibilities do you zoom in on HTLV form me? I haven't been able to link that to me based on what I've read on the internet so if you can point me to where you are getting your information I'd very much appreciate it. Thanks
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replied November 4th, 2013
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TRW,

Sorry that my answers aren't good enough for you, but after you've learned more about what's going on (i.e. read the forum from page one), and have the doctors fail you repeatedly, then my answers might being to be appealing to you. There's enough people on this forum who are willing to accept the possibility of HTLV, and some who are even more convinced - I'm not going to lose sleep that you aren't in that group. At least you aren't carrying on about HIV anymore, if that's one thing I like about this forum, everyone here has put HIV to bed for good. Another thing I like about this group is that people are willing to accept that non-HIV diseases exist, including HTLV, EBV, CMV, Parvo, JC, HHV6/8, etc. Just like you need to read this forum from page one, you should also do your own research, since that benefits the rest of us. Some of the articles on HTLV that AdviseMe quoted in this forum have blown my mind, and I appreciate his hard research. So again, for the millionth time, read this forum from page one, and also doing some of your own research could be helpful. This isn't a fast food restaurant, it's a medical forum, so help yourself to what you can find.

Best wishes.
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replied November 4th, 2013
Experienced User
I read almost all of it weeks ago. Nothing in it makes me think I have HTLV. I google symptoms and see little about symptoms. You just type "HTLV" as if you were sure and when I ask why you don't answer...
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replied November 4th, 2013
Extremely eHealthy
Well, other people believe that it's HTLV, including me. You're entitled to your opinion, and when you find something that makes more sense, let the rest of us know. A guy on the HTLVhelp facebook page just posted that Allithiamine is does the same as Prosultiamine, so I suggest that you try that to see if it alleviates your symptoms.

Best wishes.
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replied November 6th, 2013
Experienced User
Other people believe I have HTLV or that they have it?
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replied November 6th, 2013
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They themselves - no one is trying to diagnose you.
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replied November 7th, 2013
Experienced User
Tony, I think you are saying you think I have HTLV and I don't know why.
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replied November 7th, 2013
Extremely eHealthy
No one is trying to diagnose you.
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