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Certain HIV positive, but negative tests (Page 84)

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July 5th, 2013
I live Canada. I had an incident in December of last year (7) months where a condom broke though I stopped right away. Despite symptoms- tingly in the upper back that started a week after the incident, rash on the chest, and most recently eye floaters I've had a negative htlv antibody test at 3 and 5 months. Finally a doctor decided to test me for ebv 2 weeks ago which came back positive.
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replied July 5th, 2013
Experienced User
Do you have any other symptoms? Phlegm in throat? Blotchy palms?

My time frame is about the same as yours. I was tested for htlv at 4-5 months. Neg aswell as hiv std and hep.. Everything I have been tested for has been neg incl ESR and ebv I think..
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replied July 5th, 2013
Extremely eHealthy
Bresh,

All of those symptoms match what me & my girlfriends have been experiencing, one of my gf's got the dreaded chest rash, and I have the back & floater problems. You can believe that this is EBV, but I had EBV 18 years ago and believe me I would rather have EBV than have this disease.

Best wishes.
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replied July 5th, 2013
Experienced User
Bresh
Thanks for sharing, i will give you some of my opinions,
Well first of all most people become infected with EBV and gain adaptive immunity. In the United States, about half of all five-year-old children and 90 to 95 percent of adults have evidence of previous infection.
Also when it comes to a vaginal exposure what you describe is minimal.
HTLV is not considered to be prevalent at all in Canada, I think any proof that you obtain indicating you don't have HTLV would be completely credible, meaning there is not much need for you to test for HTLV.
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replied July 5th, 2013
Extremely eHealthy
DW,

You're falling into the same trap that the doctors are in, i.e. if you live in a country where HTLV isn't prevalent, you don't have HTLV. I introduced my doctor to a concept called 'airplanes', where a person (with a disease) can travel from one country where the disease is endemic to a a country where a disease is not endemic & spread the disease - HIV is an excellent example, since if ONE PERSON didn't take a plane from Africa to Haiti, the western hemisphere wouldn't have HIV. When Bresh tells you that he had sex with someone from the Carribean (just like me), you'll be less likely to doubt that it's HTLV. Same for JB with someone from Ghana, and my good friend OverStressed (ala African prostitute) on the Phoenix Rising forums. Not to mention our forum members who have been with Asian hookers. And the whole vaginal exposure is minimal is weak as well - no offense but Ive given this to women just by letting them perform oral sex on me (without ejaculation). I get where you are coming from, but this isn't the HIV am I infected forum, where, according to those MORONS, you can perform oral sex on someone with HIV (no problem), vaginal is a 50/50, and anal is possible but not 100 percent likely. They are so far off the path of reality (and most of them actually have HIV btw), that if you listened to them, you'd believe shooting up with HIV is okay too.

Also, you should be aware that natives tribes in Canada carry HTLV, just like natives tribe have for THOUSANDS of years in the USA, South America, Africa, Japan, and Australia. Let's throw in HTLV prevalence in places like Iran, India, Jamaica, and Romania, just to be comprehensive. I'm not picking a fight with you, but for someone who has no symptoms, it's offensive for you to tell the rest of us who are really suffering terribly with this that we don't have it because our exposure is minimal - we know exactly when & where & who we got sick from, and we know how sick we are, because it's OUR BODIES that are going through hell. I suffered with this so much that I am going to go nuts on the next person who tells me that this is not real.

End of story.
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replied July 5th, 2013
Experienced User
Tony
I have never said told anybody that their symptoms are all in their head.
I have always tried to dialogue with you to join information and to figure out a way where we could get the highest chance of testing positive for htlv, in fact i told you i spokee to Bernard J Poiesz, but all you reply to me is with an incensere "good stuff" and it seems to me you don't want to exchange info with me, i don't understand why not. You think somebody that isn't worried about htlv would do that, that just proves how seriously i take this, also you and I know what it's like to live believing that we have htlv and that testing is a process for this to say the least,
I don't think it's worth it for someone like Bresh or others i have given my opinion to, to worry about this when its highly probable they don't have htlv, its just not worth it. Advising them that they have htlv when they don't is psychologically depriving them from life also. You think because i don't have symptoms i shouldn't be commenting, well me admitting that I don't have symptoms should prove I'm being honest,
I didn't want to say but nobody on this forum has had such a high risk as I had, I was told the woman that exposed me was a porn actress in california porn valley, and my exposure was without a condom, top that.
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replied July 5th, 2013
Extremely eHealthy
Sorry that you feel that me replying "good stuff" is insincere - certainly if I had replied negatively, you'd have something to complain about.

And as far as your exposure goes, I (and anyone else) on this forum would GLADLY trade places with you, not for the glamour of doing a porn star, but because YOU ARE NOT SICK !!!!
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replied July 6th, 2013
Experienced User
That doesn't mean i wouldn't have HTLV. Asymptomatic infections are notorious for htlv. You yourself have gotten messages from someone who has had htlv since he was an infant who has had no symptoms at all.
Unfortunately u think I'm offensive by recommending Bresh and others to believe they don't have htlv, but you are the only one that has told me I'm being offensive, like i said before i stopped sending you messages when i started receiving alienating feedback from you. U know how it feels to have somebody to tell you to not post comments and i never thought you would indicate/target someone to make them stop commenting, i would never tell you to stop posting or commenting.
I thank you for your comments about vidaza, treatment and specially a cure is what would put our worries to rest.
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replied July 6th, 2013
Extremely eHealthy
You're absolutely right - and if you think HTLV is possible after your vaginal exposure, then so is everyone else's.

Best wishes.
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replied July 5th, 2013
Whoknows, I don't think I get phlegm in the throat but my palms are kinda blotchy. If you send me your email address I could send you a pic of my palms and you could send me. Pic of yours. Do you get the tingling as well? Tony, I don't doubt for a minute our symptoms are real and there isn't a day I don't pray or hope it's not htlv we have. I remember when the tingly started for me which was about a week after the incident, with everything I was reading I thought it was shingles but I didn't have a rash and alot of the things I read had ebv in it. Infection with ebv is life long as its from the herpes family so it never clears your system and it reactivates in alot of people just like shingles does with chicken pox. I wish no one had to deal with whatever it is that's going on with us.
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Users who thank Bresh81 for this post: TonyDewitt  TonyDewitt  TonyDewitt 

replied July 5th, 2013
Experienced User
Bresh, Check inbox for email address..
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replied July 5th, 2013
Extremely eHealthy
Bresh,

And when you've exhausted every medical option, will you seek out a hematologist so that we can get treated for HTLV? Maybe your country has a better policy of dealing with diseases? We're going to end up like the gang on TheBody site if we don't get treated.

Best wishes.
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replied July 6th, 2013
Experienced User
Clinical Manifestations Associated with HTLV Type I Infection: A Cross-Sectional Study

DISCUSSION
In contrast to HIV-1, HTLV-I is thought to cause disease in only a minority of infected individuals. Most HTLV-I-infected persons are considered to be asymptomatic carriers. In this cross-sectional study, we found an association of HTLV-I infection with several symptoms and with findings on dental examination. HTLV-I-infected subjects, without a diagnosis of HAM/TSP, were more likely to report subjective neurological symptoms such as paresthesia and weakness, arthralgia, and erectile dysfunction. HTLV-I infection was also associated with the presence of gingivitis, periodontitis, and dry oral mucosa on dental examination. Urological symptoms were common among HTLV-I-infected subjects and those who reported urological symptoms were more likely to report neurological symptoms and to present oral abnormalities than HTLV-I-positive subjects without urological complaints.
Studies in the past have attempted to determine the health effects of HTLV-I infection but showed conflicting results. A cohort study in Jamaica comparing HTLV-I seropositive food handlers to seronegative controls failed to show a difference in the prevalence of current complaints such as trouble walking and painful or swollen joints, but showed lower body weight and lower body mass index among seropositive women and a trend toward higher prevalence of severe anemia in both HTLV-I-infected men and women.The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control22 Two studies from the United States, in which a cohort of HTLV-I- and HTLV-II-infected and HTLV-I- and HTLV-II-uninfected blood donors was followed, found increased incidences of medically diagnosed bladder or kidney infection and arthritis among the HTLV-I-positive participants when compared to HTLV-I-negative controls.The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control12,The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control23
Our finding of increased frequency of neurological symptoms, such as arm or leg weakness and hand or foot numbness, in HTLV-I-infected subjects is in accordance with other reports.The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control12,The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control24 HTLV-I-infected subjects, in the present study, also reported the most urological complaints at least as often as seronegative controls, although the differences were not statistically significant. Urinary frequency and nocturia were the symptoms most commonly reported in our study sample. It has been well established that urological complaints are prominent among patients with HAM/TSP.The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control25 HTLV-I-infected patients may develop these symptoms as early signs of neurological involvement. In a survey from Brazil, 10% of patients diagnosed with HAM/TSP reported urinary symptoms or impotence as their initial symptoms, prior to the development of gait disturbances.The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control7 We also found a high prevalence of erectile dysfunction among HTLV-I carriers. Taken together, these findings demonstrate that HTLV-I carriers may present neurological abnormalities that can have an impact on their quality of life prior to being diagnosed with HAM/TSP. It is not known whether patients who already present with these symptoms are more likely to progress to HAM/TSP.
High proviral load and secretion of high levels of proinflammatory cytokines are associated with HAM/TSP.The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control26 It has been shown that a large proportion of HTLV-I carriers develop immunological responses, such as spontaneous lymphoproliferation and high production of interferon , similar to HAM/TSP patients.The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control27 HTLV-I carriers may develop other inflammatory diseases as a result of these immunological derangements. In our study, HTLV-I-positive subjects reported arthralgia lasting for more than 1 week and had evidence of synovitis more frequently than controls. These findings are in agreement with prior observations showing a possible association of HTLV-I infection with arthropathy in the absence of HAM/TSP.The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control12,The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control23,The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control28 In this study, HTLV-I-infected subjects presented high rates of gingivitis, periodontitis, and dry oral mucosa. These oral findings could be explained by an exacerbated Th1 type immune response due to HTLV-I infection or, alternatively, by a direct influence of the virus. Of note, these oral findings remained statistically significant even after adjustment for income level. These findings may have been confounded by current or past smoking, for which we were unable to adjust.
We also observed that HTLV-I-infected subjects who reported urological symptoms were more likely to also report neurological symptoms and to have dental abnormalities than subjects who did not have urological complaints. This clustering of symptoms was not found among controls. Studies are in progress to determine if patients with urological and other findings have immunological abnormalities or elevated HTLV-I proviral loads similar to HAM/TSP patients, which could predispose them to development of myelopathy and other inflammatory diseases.
Our study has some limitations worthy of mention. Since HTLV-I-infected subjects were aware of their serostatus, they could have been more likely to report symptoms that they assumed were related to HTLV-I infection. Also, we selected HTLV-I-infected subjects undergoing continued medical care at the HTLV-I multidisciplinary clinic, which could have created a selection bias. HTLV-I-infected subjects were slightly older, despite matching, and had lower income and educational levels than their seronegative controls, which may have influenced their reporting of symptoms and ability to access routine dental care. To reduce the likelihood of confounding, we adjusted our analyses for income level. Most of the associations observed persisted after multivariate analysis. Lastly, due to logistical constraints, different examiners evaluated HTLV-I-infected subjects and HTLV-I-negative subjects. To minimize the impact on our results, the physical examinations were standardized among study clinicians prior to enrollment of subjects and both examiners evaluated a subset of HTLV-I-infected patients, which yielded similar findings.
In summary, we found that HTLV-I infection is associated with a variety of clinical manifestations, which occur relatively often in patients who do not have or have yet to develop myelopathy. Our findings underscore the need for continued medical care of HTLV-I-infected individuals in order to promptly diagnose and potentially treat complications associated with HTLV-I infection. Further studies are needed to determine if HTLV-infected patients with clinical abnormalities are more likely to progress to HAM/TSP.
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replied July 6th, 2013
I'm writing this in hope that others will share what they've been through so far with me too.... The first dr I saw in December of last year(2 weeks after the tingling started) told me it sounded like shingles but said she couldn't prescribe me anything till I got the rash which never came. I saw another dr in January who told me this was not shingles as I would've had a rash by then. He sent me for an MRI on my upper back which came back normal and then sent me for blood which he also said was normal. I went back in feb again and he sent me for more blood work which this time included a Ana test for autoimmune diseases and other specific one.... This time he told me everything except for one thing returned normal, I didn't have any auto immune diseases but my creatine muscle enzymes was a little bit high. At this point I had came across htlv in reading so I asked him for that test which he refused, telling me he didn't think it was necessary even though I was pretty much begging for the test. Instead be sent me for an HIV, hep b and c despite me telling him I've done countless HIV test before. When those results came back negative as well, he told me he didn't know what else to tell me and sent me to an internist. I went to the hospital in the end of march and told a dr in the emergency department the symptoms I was having and requested the htlv test which he had never heard of but after googling it as I waited he decided to send me for the test as well as a vdrl for syphilis. I got the results back 2 weeks after and they were both negative. On may 16th I saw the internist who examined me and said he didn't notice anything wrong with my muscle strength and after asking if I had lost weight he told he didn't consider my creatine( muscle enzyme) abnormal for someone my built. He sent for blood work to repeat the creatine( muscle enzyme) test as well as tests for liver function, thyroid and he also made me repeat the htlv test as I told him about it and that it was on my mind. A week later the dr that sent me to the internist asked me to come in as he received the blood results from the internist. He told me my creatine( muscle enzyme) was back to normal and everything else looked fine except something bout the thyroid was a lil lower than he expected so he wanted to send me for more specific test on the thyroid( TSH and T4 as well as a CBC). He told me he'd send the results to the internist as I was to see him again on June 17th. On June 17th I went back to the internist who told me the htlv test was negative and that the TSH, T4 and CBC results were that of a healthy person so he doesn't know what else to tell me but to live my life and stop worrying. I got a family dr in June as well who wanted to give me a physical as I was a new patient so he sent me for blood work for a cholesterol test and repeat the CBC. I remember asking him a question bout cd4 from something I read so he asked why I was asking... If I was concerned bout HIV so I told him no and about all the tests I've had so far but still had these symptoms. He told ms he was gonna send me for a ebv test too cause that's been going around a lot lately. I week later I went for the results and he told me then that the CBC and cholesterol was ok but that I had ebv. I'd appreciate if any could share their experiences with me as we'll.
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replied July 6th, 2013
Experienced User
Bresh
Ill give you a quick summary of my testing experience, i found a commercial Dr. Who will test me with any test the lab he chose performs including htlv antibody and htlv pcr dna for gag.
In short i have had an hiv, hcv, hbv, htlv naat testing at 6 months and a htlv antibody test at 10 months, the only thing i been diagnosed with is posible HPV.
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replied July 6th, 2013
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replied July 6th, 2013
Tony, do you mind if we exchanged numbers? I believe you said Esperanza speaks Portuguese so I was thinking it would prob be a good idea to have him email Dr Gotuzzo about this new test you said is being developed in brazil and its reliability.
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replied July 7th, 2013
Extremely eHealthy
Sure you can have my number, just message me. Dr. Gutuzzo is in a different country and speaks a different language. I'd rather just get the test kit, get tested, and move forward. I don't want to waste any more time.
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replied July 7th, 2013
Extremely eHealthy
No problem exchanging numbers, but Doctor Gotuzzo has no knowledge of the new HTLV test, has no expertise in testing (just treats patients), and speaks a different language than the people who developed the test. I'd rather just take the test and move forward instead of asking doctors for their opinions.

Best wishes.
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replied July 6th, 2013
I'd email him about it myself but from his previous responses to me I believe it would prob be better if asked in a language he commands better
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replied July 6th, 2013
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replied July 6th, 2013
Experienced User
I still can't understand that if I have this disease we are all talking about y hasn't this girl I had exposure to hasn't given it to any of her other partners... She's always been with someone and sexually active.
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replied July 7th, 2013
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replied July 7th, 2013
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replied July 7th, 2013
Experienced User
Hello everyone -

I continue to have good days and bad days.

I believe this is a coxsackie b, virus - at least for me.

My big concern now is pleurisy and myocarditis, chest pain difficulty breathing, tiredness and rapid heart beat.

I read an interesting article recently from university virology dept.

Essentially, they are going to take blood, subtract out human dna and then what is left is most likely viral. They will then use pcr techniques to identify new viruses. Probably doesn't help us much but it is a start.

The new corona virus has killed 77 people and it is just now attracting research attention.

Weight gain is becoming a problem for me because even small amounts of exercise causes lots of fatigue.

I have my 15th dr appt next week - cardiologist.
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replied July 8th, 2013
Extremely eHealthy
WS,

If you find that university is willing to accept blood samples, I would gladly send my blood to them for analysis. The approach you described seems very practical & good for identifying new viruses, which is essentially what is plaguing us (it is not bacterial).

Best wishes.
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replied July 7th, 2013
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replied July 7th, 2013
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Any posting? Can't see
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replied July 7th, 2013
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This forums is playing up...
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replied July 8th, 2013
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replied July 8th, 2013
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replied July 8th, 2013
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Sorry about all my posts guys.. I couldn't see the post. My apologies...
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