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Certain HIV positive, but negative tests (Page 36)

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July 10th, 2012
Scared,

My case is exactly similar with yours. My dr prescribed me nasal spray for allergic, and other medicine for acid reflux,..bla bla..

Guys,

please let us have one common site to discuss everything on chat. Tony, please try to have one site/social network site that can enable us to chat in group. thanks
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replied July 10th, 2012
Extremely eHealthy
DarkGuy,

I've already paid with my own money for the HTLVhelp site, which has a very similar forum to this - we should migrate there if this forum becomes no longer usable. I've also set up a Face Book page under the name HTLVhelp.

Best wishes.
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replied July 10th, 2012
Hi every one I have all symptoms, but 27 week negative, can any one tell me where I can do PCR test in London my hospital refuse to do PCR test, but of I find PCR test and if it come negative after 7 month do I need to still worry, I m married my 1 mistake cost me allot, is we can find any sign to do full blood counts or not my WBC lymphocytic keep comming down 1st test it were 30 % after 1 month 25% and after one more month it's 22%.
I tested positive for Ebv too and it is consistent , is Ebv can do this all? Plz tell me where in London I can do PCR test for htlv?
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replied July 10th, 2012
Experienced User
onechanceplz, I and everyone else on this forum totally understand what your going through. You didn't mention what u tested negative for at 27 weeks. If it was for HIV you are conclusively negative. A pcr test is used to detect the virus sooner before your body produces antibodies. An HIV antibody test done 13 weeks after your last possible exposure will give you your conclusive result. It's been this way since 2004 and I haven't found anywhere where a persons negative result has changed after 3 months. Im totally with you mine was a one time exposure as well, and I'm afraid I've infected my wife as well. You say you tested positive for EBV and wonder if it can cause all your symptoms ABSOLUTELY it can. Have you read up on EBV symptoms? Have you asked your dr. If EBV is what's causing all your problems? EBV is also linked to Burkitts Lymphoma not trying to scare you just trying to help. I'm wondering if this is what I may have. Do your research on EBV it causes a lot of problems for some people. I'm sorry I wouldn't know where in London to do a pcr test for HTLV, contact your local health department or center for disease control I'm sure one of them can point you in the right direction. Good luck friend,
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replied July 10th, 2012
Experienced User
Hey guys, I forgot to mention when my G.I. Dr. did my upper scope and biopsy, he all did some labs as well CBC, liver function pannel and some other stuff. His nurse said everything was in normal range. I just don't understand why nothing is showing up in my blood work. I told him my stools have been shot, different colors, also with moucus. This sounds like liver problems to me that's why I don't understand why my blood work isn't showing anything. Ive been having pains in my liver and spleen area for months now he did an ultrasound and said everything looked fine. I'm completely lost here I know in my heart my liver and spleen are enlarged because it's tender in those areas. I don't want to think the worst but I'm scared this is some kind of lukemia or lymphoma. Ive also noticed little pin point red dots on my arms and legs not a lot just a couple is anyone else experiencing any of this? Any ideas guys would greatly be appreciated. God bless everyone,
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replied July 11th, 2012
Experienced User
Scared, those little dots i have exactly since a while , they are like a couple or so on my arms,legs,hands and some times in my chest , it leaves a mark with me ( dark mark ) after a while ,
my GF is going to take her HIV compo test ( ag / ab ) test , it's almost a year since we had our first sex.
if it came back negative, i think i will just let HIV forever,because i got also the HIV test after 7 months with negative results,
Scared,my left side is always in pain most of the time,my tongue , mouth and cheeks from inside develop a patches/pimples one after another,
god bless you man for your constant help & search of what we could be suffering from.
All the guys here are very supportive for each others, god bless you all
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replied July 11th, 2012
Experienced User
I'm finding out about xmrv, turns out there's not commercial tests, .
but you can test in Belgium, redlabs
is the third retrovirus found in humans, the first one was HTLV, the second one was HIV, and this is the third one, is trasmitted by saliva or sweats, or tears, not sexually...
It's linked to fybromialgya and Chronic Fatigue Syndrome, kind of dangerous because is oncogenic, causes prostate cancer...
but governments deny it even exist, even though there are million infected around the world...
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replied July 11th, 2012
Experienced User
IM FROM MINNESOTA....


DFRANK AND SCARED49... thanx for all your efforts and researching whats cuasing us to feel sick. im sorry for not being on here lately i just dont have any new up dates..

I went to see my new doctor today on a check up on how im doing, i couldnt really ask for more tests or anything becuase the truth is i am feeling better but im not really back to the healthy person i used to be, also she told me that eveyone has H pylori! that they only medicate it when you get symtoms.. i told her my throat continues to feel dry and sore/irritated at times, always feels like theres something stuck in there, so she told me to start prolesic after my meds for 2 weeks and if nothing gets better then to go back and we can figure it out.

Dfrank i am going to try your diet, can you please give us the meds that we can get over the counter, i wanna clean my system also, sometimes i feel like im just dealing with an overgroth of fungus! maybe thats why my skin burns at times,

im still in this with you guys. not leaving you, i will keep you guys informed with new research and results,, thanx.

i will start gargling water mixed with vineger, hope it helps my throat, IF YOU TRY IT BE READY TO GAG! BUT I DID IT ONCE A COUPLE OF WEEKS BEFORE MY MEDS AND IT SEEMED TO WORK,


TO ALL THE PEOPLE READING THIS FORUM AND ARE GOING THROUGH THE SAME THING ASS US OR SIMILAR! PLEASE JOIN US, THE MORE PEOPLE WORKING ON THIS THE MORE RESOURCES WE WILL HAVE... MORE DOCTORS ANSWERS/ADVISE AND EVERYONES SYMTOMS AND TESTING RESULTS AND TESTING PERIODS ON STDS AND OTHER DISEASES.. THANX AND GOOD NITE EVEYONE..

DEPRESSEDMAN
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replied July 11th, 2012
@scared49
Thanks for reply, I did 27 week htlv 1/2 antibody test come back negative, 25 week HIV and other std negative, symptoms from last 6 month 2 weeks, rash, easy brusing on whole body, sore througt, sore tong with small ulcers coming and going, oral thrush 3 times, dry mouth, lower back pain, tingling and numbness in hands foot, legs, no energy in body, hurting joints, dry skin, pain in both eyes, from last two months, and many more.
Tested positive Ebv, all other negative, my think I m crazy, he do not want to do any more test, I do not know where can I do PCR test for htlv and how long more I need to wait, I m married my wife fighting me to do unprotected sex with her but I do not want to, because she do not know my worries, she think I m ok like my doctors, here in London queen merry hospital toled me htlv windo period is 3 month too I need not to worry but how I justify my all symptoms start after my risk, and the cwr I was involved with left the brothel, I think she know she were infected some HIV or htlv, & she were looks like drug user.
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replied July 11th, 2012
Experienced User
HTLV Test
J Med Virol. 2008 Mar;80(3):484-93.
Evaluation of a new, fully automated immunoassay for detection of HTLV-I and HTLV-II antibodies.

Qiu X, Hodges S, Lukaszewska T, Hino S, Arai H, Yamaguchi J, Swanson P, Schochetman G, Devare SG.
Source

Abbott Diagnostics, AIDS Research and Retrovirus Discovery, Abbott Park, Illinois 60064-6015, USA.
Abstract

Screening blood donations for human T-lymphotropic virus types I and II (HTLV-I/II) continues to be important in protecting the safety of blood products and controlling the global spread of these retroviruses. We have developed a fully automated, third generation chemiluminescent immunoassay, ARCHITECT rHTLV-I/II, for detection of antibodies to HTLV-I/II. The assay utilizes recombinant proteins and synthetic peptides and is configured in a double antigen sandwich assay format. Specificity of the assay was 99.98% (9,254/9,256, 95% CI = 99.92-100%) with the negative specimens from the general population including blood donors, hospital patients and pregnant women from the US, Japan and Nicaragua. The assay demonstrated 100% sensitivity by detecting 498 specimens from individuals infected with HTLV-I (n = 385) and HTLV-II (n = 113). ARCHITECT rHTLV-I/II results were in complete agreement with the Murex HTLV-I/II reference assay and 99.7% agreement with the Genelabs HTLV Blot 2.4 confirmatory assay. Analytical sensitivity of the assay was equivalent to Murex HTLV-I/II assay based on end point dilutions. Furthermore, using a panel of 397 specimens from Japan, the ARCHITECT rHTLV-I/II assay exhibited distinct discrimination between the antibody negative (Delta Value = -7.6) and positive (Delta Value = 7.6) populations. Based on the excellent specificity and sensitivity, the new ARCHITECT rHTLV-I/II assay should be an effective test for the diagnosis of HTLV-I/II infection and also for blood donor screening
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replied July 11th, 2012
Extremely eHealthy
I appreciate everyone's input on how they are doing, which makes me realize that I am not suffering alone, and that means much to me, regardless of what state, country, or continent any of you is in. Like the rest of you, I want to believe that the symptoms will go away someday, and that I will not be looking at the remainder of my life having the paralysis and rapidly fatal leukemia that HTLV causes.

For those of you who have infected others (I've infected at least a dozen others), I share your worry about potentially ruining other people's lives. Two girls that blew me (without me ejaculating) are sick as well, proving (as Mr. Sadowsky wrote) that it can be transmitted via oral sex.

The one thing that we definitely know is it is not HIV - we've all tested exhaustively for it; we all know that three months is the definitive HIV antibody window, and some of us have even taken additional HIV PCR tests.

I'd love to believe the experts like Dr. Joe Zunt, who say that testing HTLV negative at 6 months truly means I am not infected with HTLV, or the blood banks who use 51 days as their window, or other doctors who use 3 months because HTLV "is just like HIV".

But *we* are *all* sick, and the symptoms are too similar, lower back pain, difficultly walking, skin disorders, etc. And people like Mr. Sadowsky say that some people never develop antibodies to HTLV, so he recommends PCR testing - well I had the HTLV PCR test at 4.5 months, and it was negative. So now what? Do we just keep testing every three months until something shows up? And like AdviseMe wrote, even if we do test positive for HTLV someday, what then? No treatment for a disease that has ruined the lives of 25 million people, what a terrible shame. To make matters worse, the cover up of this disease is the most insane thing in the world - how many people (even doctors) have ever heard of HTLV? Where's the public health awareness? Where's the government effort against it? Where's the support groups? It's like we are the only people on the planet dealing with this realistically?

Besides the papers I've found on treating HTLV with hyperthermia (heating the body) and Azacytidine (Vidaza), I've also found papers that state that low level HTLV infection could exist and not be detected by PCR nor antibody tests. I also read another paper that 8% of the blood donors in New York tested positive for Tax (a protein only HTLV has), so the bottom line is that way more people could have HTLV than the 25 million reported, and it's flowing through the blood supply like water.

Best wishes / HTLVhelp
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replied July 12th, 2012
Experienced User
I'm having a lot of problems with my left arm, the pins and needles came back in my hands and fingers. The white spots in my mouth on the inside of my cheek is getting worse. I try and try toget my mind off of hiv, but there is still that little doubt on the back of my mind, cause of all that I've been thru, and a lot of the stuff went away and now is starting to come back. Tony, have you ever tested for HTLV yet?
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replied July 12th, 2012
Extremely eHealthy
Dalton,

To answer your question, I've tested HTLV negative at 4.5 months (antibody & PCR) and 7 months (antibody only). And of course, the doctors say that HTLV should be detected by now (recall blood banks use 51 days as their HTLV window).

I'm experiencing symptoms like low back pain, and problems walking. I've read that people infected with HTLV can see these paralysis symptoms within a year.

I'm eagerly awaiting DFrank's test results, since he's been sick the longest.

Best wishes.
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replied July 12th, 2012
Experienced User
hey guys,
How r u doing?
I am still on medication for H. pylori. I am feeling better these days but not totally well. Still having loose stool, maybe once a week now, but that's something that normally bothers me.

Hoping that all of u will feel better soon than ever. Don't know when i'll be back to normal, but atleast feeling better is such a good feeling.
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replied July 12th, 2012
Extremely eHealthy
Ustas,

I am glad that you are feeling better - like you, whenever I feel better it is such an enormous relief. I recently read the following on the Wadsworth Center's site for the New York State Department of Health for individuals concerned about HTLV:

The screening test may be repeated in 4 to 8 weeks, and should be repeated after six months. Individuals who do not become positive on confirmatory tests (i.e., remain negative or have inconclusive results) after six months are considered clinically negative for HTLV.

Best wishes.
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replied July 12th, 2012
Experienced User
Hey guys, I'm glad you all were able to get tested for HTLV. Everytime I mention it I pretty much get laughed at. My neurologist wouldn't test me for it he said its very rare and said he's seen only 2 cases of it. He did a exam on me and said he's positive I don't have it. He said I would know because I would be walking funny. I also went to see an orthopedic dr. about my spine pain he said my x rays didn't show much. I mentioned to him also about the possibility of HTLV and he acted like he didn't here me, just recommended physical therapy what a waste of time that was.

I see my regular dr. on August 7th I guess I'll ask him to test me for HTLV and see what he says, that will make it a little over 8 months since my exposure. Guys if he refuses to test me where do I go then to get tested?

Also, my stools are shot different colors all the time, loose, with moucus. Still have the soar throat comes and goes got this lump feeling like something is stuck in there. My ent dr. looked in my throat a couple of times with the scope and said he dosent see any lumps or lesions so I don't know what it could be. Everywhere I read they say a soar throat that dosent go away could be throat cancer and hpv is a likely cause. My wife went to her gynecologist had her paps smear and also did a high risk, low risk hpv DNA test and everything came back fine. So do you guys think I should forget about hpv or not? My neck glands are still soar my collar bones are also soar. I keep getting mouth ulcers that come and go. Is anyone else experiencing any of this.

Hey Ustas, glad to hear your feeling better very happy for you. I hope we all find out what's going on really soon.

Good luck everyone keep your heads up we'll get through this, I'm here for all of you till the end I'll keep posting results as I get them.
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replied July 12th, 2012
Extremely eHealthy
Scared,

Sounds like you are getting a harder time with the doctors than I am - my infectious disease doctor (who also only saw 2 cases of HTLV in her 22 year career) was willing to test for HTLV. Also, my hematologist was also willing to do to the test - I lied by telling him the person I had sex with was confirmed HTLV positive and that I was having symptoms. Speaking of symptoms, you & I both have spine pain & lump in the throat, so no explanation for those from your doctors, yet they want to say that it's not HTLV? That's strange. At least if your doctors were willing to give you a different diagnosis, I would be less worried. Saying it's nothing while you & I have spine pain is a bad sign, Im sorry.

Best wishes.
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replied July 12th, 2012
Experienced User
Hey guys feeling sooo much better, no stomach aches, headaches , and no dizziness or trouble walking. I also had spine tenderness, just in all every thing has gotten a lot better. Depressed please try it. Also scared and dark guy. Should to. You to tony. I take candidia clear, and a candidia cleanse, and a strong probiotic( 80 billion cells). I'm at work so don't have the exact names but will post them later. There's several websites, or google candidia diet. the cleanse is hard and so is the diet, but well worth it. No sugar,bad carBs or anything with yeast. Also lots of other things to avoid. The cravings have subsided for me, only took a few days. I will call my doctor tomorrow for my results( as he said wait 2 weeks) that would be Monday, but anyway when I get them I will let you guys know ASAP . Will post more later when I have time ( working). Find a good health food store and they should have all the supplaments you need! Hang in there guys, will post tomorrow!
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replied July 12th, 2012
Experienced User
Feeling so much better, wrote 2 long posts that didnt go through. I will post all info when I get home to my computer. I will also call for my test results tomorrow. Hang in there guys!
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replied July 12th, 2012
Experienced User
Depressed I will give you the info on my products, man what a difference on how I feel.
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