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Certain HIV positive, but negative tests (Page 112)

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October 16th, 2014
Experienced User
…Forgot to add: today I started an anti-inflammatory diet. I wanna avoid gluten (difficult for an Italian, but luckily there's gluten free pasta Smile ) and dairy. Lowering carbs as much as possible, and taking omega 3 supplements. I read it helps in neuroinflammatory conditions.

Neuroinflammation is one of the few things tests showed up (altered cerebrospinal fluid).

TD, EMIG, all the others.. how are you guys doing?
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replied October 17th, 2014
Experienced User
hi friend.i tested for hiv1/2 Elisa at 11.5 months =46 weeks negative.. now i have new things coming like little nose water. some pimples coming and going....
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replied October 17th, 2014
Experienced User
New clinical directions for Adult T-Cell Leukemia / Lymphoma related to Htlv:

Human T-cell lymphotropic virus type I-associated adult T-cell leukemia-lymphoma: new directions in clinical research.

Adult T-cell leukemia-lymphoma (ATL) is a distinct malignancy of regulatory T cell (Treg)/TH2 cells caused by human T-cell lymphotropic virus type I (HTLV-1), with a high frequency of expression of CD3/CD4/CD25/CCR4 and FoxP3 in about half of the cells. However, in primary ATL cells, although expression of the virus, including the Tax oncoprotein, appears just after an in vitro culture, integration sites of the provirus into the host genome are random, and chromosomal/genetic abnormalities are complex. ATL is thus a single disease entity that is caused by HTLV-1 and possesses diverse molecular features. The clinical features and prognosis of ATL vary, and this has led to subtypes classified into four categories: acute, lymphomatous, chronic, and smoldering types, based on lactate dehydrogenase and calcium values and organ involvement. Approximately 15 to 20 million individuals are infected with HTLV-1 worldwide, 1.1 million of whom reside in Japan, and the annual incidence of ATL has been estimated to be approximately 1,000. HTLV-1 infection early in life, mainly from breast feeding, is crucial for the development of ATL. The age-specific occurrence of ATL and complex genome abnormalities that accumulate with disease progression suggest a multistep carcinogenesis model following HTLV-1 infection. Various treatment options are available for ATL and consist of watchful waiting for indolent ATL, intensive chemotherapy followed by allogeneic hematopoietic stem cell transplantation for aggressive ATL, and a combination of IFN and zidovudine for ATL with leukemic manifestation. Several promising new agents, including an anti-CCR4 antibody, are currently undergoing clinical trials associated with translational research.
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replied October 18th, 2014
Experienced User
Can HTLV-1 Infection Be a Potential Risk Factor for Atherosclerosis?


Abstract
Introduction: Chronic inflammations including infectious disorders such as HIV infection are now considered as risk factors for atherosclerosis. In this study, conducted for the first time on human subjects, human T-lymphotropic virus type 1 (HTLV-1) infection was examined as a potential risk factor for atherosclerosis. Materials and Methods: This is a matched-pair cross-sectional study on 58 HTLV-1-infected cases and 55 healthy control subjects. The subjects did not have any major cerebrovascular risk factors. Carotid intima-media thickness (IMT) was measured for each patient using the standard protocol of the Atherosclerosis Risk in Communities (ARIC) Study. Results: The mean age of the subjects was 42.9 10.52 years, and males made up 33% of the population. The difference between the mean IMT of the infected case group and that of the healthy control group was significant (p < 0.05). Discussion: This study indicated that the HTLV-infected individuals showed a greater carotid IMT than the age- and sex-matched control subjects. Observing no other known risk factor for atherosclerosis, we concluded that this significant difference in IMT might support the hypothesis that HTLV-1 infection is an independent risk factor for atherogenesis. 2014 S. Karger AG, Basel.
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replied October 19th, 2014
Experienced User
hi, thanks for your reply in advance, I am a male & i had an exposure 12 months ago with an unknown hiv

sw unprotected oral and vaginal.
i got tested for hiv 1/2 as the next time table:
*day 46 of exposure hiv Elisa antibody : negative.
*day 48 of exposure hiv Elisa antibody : negative.
*day 55 of exposure hiv Elisa antibody : negative.
*day 77 of exposure hiv1/2 Elisa antibody : negative.
*day 80 of exposure hiv Rapid antibody : negative.
*day 88 of exposure hiv1/2 antibody : negative.
*day 94 of exposure hiv Rapid antibody : negative.
*day 120 of exposure hiv1+O/2 rapid 20 minutes antibody : negative.

*day 126 of exposure hiv1+O/2 rapid 20 minutes antibody : negative.
*day 130 of exposure hiv1/2 Elisa antibody : negative.
*day 135 of exposure hiv1/2 Elisa antibody : negative.

*day 138 of exposure hiv Cobas antibody : negative and HIV RNA TAQMAN less than16iu/ml lower than

detection limit.

*day 140 of exposure hiv1+O/2 rapid 20 minutes antibody : negative.

*day 148 of exposure hiv1/2 Elisa antibody : negative.
*day 160 of exposure hiv1/2 Elisa antibody : negative.
*day 170 of exposure hiv1/2 Elisa antibody : negative.
*day 180 of exposure hiv1+O/2 rapid 20 minutes antibody : negative.
*day 192 of exposure hiv1+O/2 rapid 20 minutes antibody : negative.
*day 200 of exposure hiv1/2 Elisa antibody : negative.
*day 210 of exposure hiv1/2 Elisa antibody : negative.
*day 220 of exposure hiv1/2 Elisa antibody : negative.
*day 230 of exposure hiv Cobas antibody : negative.
*day 240 of exposure hiv Cobas antibody : negative and HIV RNA TAQMAN less than10iu/ml lower than

detection limit.
*day 242 of exposure hiv antigen/antibody CMIA : negative.
*day 246 of exposure hiv1+O/2 rapid 20 minutes antibody : negative.
*day 250 of exposure hiv1/2 Elisa antibody : negative.
*day 260 of exposure hiv1/2 Elisa antibody : negative.
*day 270 of exposure hiv1/2 Elisa antibody : negative.
*day 280 of exposure hiv1/2 Elisa antibody : negative.
*day 288 of exposure hiv1/2 Elisa antibody : negative.
*day 294 of exposure hiv1+O/2 rapid 20 minutes antibody : negative
*day 310 of exposure hiv1/2 Elisa antibody : negative.
*day 330 of exposure hiv1/2 Elisa antibody : negative
*day 340 of exposure hiv1/2 Elisa antibody : negative
*day 350 of exposure hiv1/2 Elisa antibody : negative
**Am I negative to hiv 1/2?? no matter what subtype?
*I got tested for VDRL on day 300 of exposure : negative
*I got tested for HCV/HBV on day 340 of exposure: negative
*tested positive for TB by Tuberculin skin test on day 350 of exposure.
*i have some folliculitis that come and go on chest and back. sometimes red neck, burning sensation.

and feeling weak..
also i am having a lymph pain under jaw.
some stomach pain..
this is my case,,, i don't know what is going on!! bone pain too now!
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replied October 20th, 2014
Experienced User
Absolutely no need for further Hiv testing.

You're positive to TB, so you need to get treatment for it.
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replied October 20th, 2014
Experienced User
Guys,

on the GVN site the HTLV task force map has been published. Maybe you can find a Dr. close to your place in order to talk to him.

Go to: Gvn.org >> Research >> Task Force HTLV

best wishes
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replied October 20th, 2014
Experienced User
thanks
did you check hiv pcr?????
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replied October 23rd, 2014
Experienced User
Finally an article which can be very useful in speeding the discovery of HTLV Protease Inhibitors.

Molecular insights of protein contour recognition with ligand pharmacophoric sites through combinatorial library design and MD simulation in validating HTLV-1 PR inhibitors.
Selvaraj C1, Omer A, Singh P, Singh SK.

Abstract
Retroviruses HIV-1 and HTLV-1 are chiefly considered to be the most dangerous pathogens in Homo sapiens. These two viruses have structurally unique protease (PR) enzymes, which are having common function of its replication mechanism. Though HIV PR drugs failed to inhibit HTLV-1 infections, they emphatically emphasise the need for designing new lead compounds against HTLV-1 PR. Therefore, we tried to understand the binding level interactions through the charge environment present in both ligand and protein active sites. The domino effect illustrates that libraries of purvalanol-A are attuned to fill allosteric binding site of HTLV-1 PR through molecular recognition and shows proper binding of ligand pharmacophoric features in receptor contours. Our screening evaluates seven compounds from purvalanol-A libraries, and these compounds' pharmacophore searches for an appropriate place in the binding site and it places well according to respective receptor contour surfaces. Thus our result provides a platform for the progress of more effective compounds, which are better in free energy calculation, molecular docking, ADME and molecular dynamics studies. Finally, this research provided novel chemical scaffolds for HTLV-1 drug discovery.
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replied November 2nd, 2014
Extremely eHealthy
Purvalanol-A has been shown effective against HTLV for some time, however it has serious side effects. The type of Protease, Integrase, and Reverse Transcriptase inhibitors that are available for HIV also need to be developed for HTLV.

Best wishes.
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replied November 3rd, 2014
Experienced User
It wouldn't take much effort. Look at new HCV drugs: they were developed in few years, taking advantage of the studies concerning HIV. The same could be done for HTLV, it's just a matter of interest and willingness of Pharm. companies.
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replied October 24th, 2014
Experienced User
dear friends, I have a very bad news, my cd4 dropped to 28% from 37% just in 2 months,... please everyone, check your cd4... mine dropped and still hiv1/2 elisa negative.
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replied October 29th, 2014
Experienced User
Guys,
the Draco Fund is ready to accept donations. Please help the development of this promising antiviral:

TheDracoFund (dot) org
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replied November 2nd, 2014
Extremely eHealthy
I already donated $12.05
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Users who thank TonyDewitt for this post: jammy88 

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replied November 3rd, 2014
Experienced User
Thank you TD. I donated too.
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replied November 2nd, 2014
HIV test
Hi all I read all your post, I am having the same symptoms as you guys and it's been 98days post exposure. I received an unprotected oral sex from a street prostitute and 7 weeks later I developed all the symptoms plus a boil-like bumps in my armpit and groin which lasted for about 3 weeks. I was so scared thinking it was HIV but tested NEG- using the Oraquick oral swab test in the Clinic. Do you guys think I can trust my Oraquick result? I'm still having ARS symptoms
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replied November 2nd, 2014
And do you think I can contract HIV through one time 5 mins gentle BJ? I read that it's only a theoretical risk.
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replied November 3rd, 2014
Experienced User
Hello regret,

sorry about your illness. Getting HIV by receiving unprocted oral sex is almost impossible. Your test is reliable and definitive. However, you can get HTLV or other infections by receiving oral sex. I hope your symptoms get better. Never stop fighting for your health.
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replied November 3rd, 2014
Hello Jammy,


Thanks for your reponse I appreciate it. I live in a small town in North Dakota and HTLV test is not available, however, I’m planning no traveling to Chicago during the Thanks Giving break. So you guys think I can forget about HIV now? That’s what everybody is telling, I rather it be anything than HIV.
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replied November 4th, 2014
Experienced User
Hi regret,

Yes, you can forget about Hiv. After 3 months, Hiv test is 100% reliable.
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replied November 4th, 2014
Thank you Jammy, I ordered another Oraquick Test Kit lastnight, I’ll take the test for the last time and if it hopefully turns Neg- then no more testing again.
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replied November 4th, 2014
Experienced User
I understand your concern. However, I'm sure you'll be neg.

Keep us posted on your symptoms.

Cheers
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replied November 4th, 2014
Thank you Jammy,

The symptoms I’m having this week are,
Weakness in shoulders and arms
Fatigue
Pain in the neck and under jaw
Sore throat
Indigestion
Excessive gas
Painful lymph nodes under jaw
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replied November 4th, 2014
Thank you Jammy,

The symptoms I’m having this week are,
Weakness in shoulders and arms
Fatigue
Pain in the neck and under jaw
Sore throat
Indigestion
Excessive gas
Painful lymph nodes under jaw
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replied November 4th, 2014
Experienced User
Google search "htlv.registry" u can get info there. I hope you all are doing ok, despite everything.
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replied November 5th, 2014
Experienced User
Does anyone have involuntary muscle movements. Not like whole limbs, but something like a twitching eyelit, but then for other muscles?
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replied November 5th, 2014
Experienced User
Hi guys,

I'm determined to get a diagnosis. That's why I contacted MetaMed. Here's their answer. I might fly to New York to get some tests done with them.

Dear Mr. XX,

It has just come to my attention that our response to you never got sent out. I deeply apologize for the delay.

I am sorry to hear about the challenges with your health, and especially the impact they have had on your life. It is our mission as MetaMed to help people like yourself get well, no matter how strange your condition, so you can get back to living your life. I will do everything within my power to help you.

You are correct that is an unusual set of symptoms to develop from a drop of blood, especially since you have done tests to rule out the major blood-borne illnesses. To be completely up front with you this will not be an easy mystery to solve, but it is exactly the type of problem that MetaMed is specially equipped to deal with. If you haven't seen it before, this is the link to a story on National Public Radio of the work we did with a similar mystery case, whom no one else could diagnose:
http://hereandnow.wbur.org/2013/07/24/seco nd-opinion-metamed

The first step to helping you determine what is going on and to resolve it would be to broaden the scope of our search. It is likely that there is an underlying problem that is being overlooked, and we need to make sure we don't overlook anything. We will search for anything unusual, or patterns in your symptoms or medical history.

After that we would explore each possibility in depth to determine the underlying cause. If necessary we can do modeling of you body's neurological and biochemical behavior at the molecular level to find very specific mechanisms that are overactive or underactive.

Finally, once the underlying issues are understood in depth we can find treatment options. That includes searching for treatments that only exist in other countries, and cutting edge technologies that are in clinical trials or haven't reached mainstream market yet.

One of the ways we differ from medical establishments that may be most helpful to you, is that we are looking for the actual mechanics of what is going on in your body instead of trying simply to match you to a diagnostic "label." Your set of symptoms does indeed seem rare, and it's possible there may not be a single diagnosis that matches. Instead of that being a dead end, we've worked with a number of patients who didn't have a clear "diagnosis" and were able to help them by addressing the imbalances in how their body was working and get them back to a better state of health.

Attached is some more information about what we do, if you would like to continue learning more.

Let's make time to talk this week. My schedule is fairly open Wednesday and Thursday, or most times during the weekend. I am on Eastern time, and imagine you are 6 hours ahead of me? I can be available during my early mornings as well to accommodate the time difference.

I look forward to speaking with you and to helping you get well.

Best regards,
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replied November 5th, 2014
I have it all mostly around my buttocts, legs, laps, feet and arm.
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replied November 5th, 2014
I have it all mostly around my buttocts, legs, laps, feet and arm.
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replied November 6th, 2014
Experienced User
I have muscle spasms. Vitamin B has greatly decreased their frequency, tho (almost nil, now).

Let me update you guys on my situation. I do really want a diagnosis, that's why I contacted MetaMed and here's their answer. (I'm having a Skype call today with them)

Dear Mr. ***,

It has just come to my attention that our response to you never got sent out. I deeply apologize for the delay.

I am sorry to hear about the challenges with your health, and especially the impact they have had on your life. It is our mission as MetaMed to help people like yourself get well, no matter how strange your condition, so you can get back to living your life. I will do everything within my power to help you.

You are correct that is an unusual set of symptoms to develop from a drop of blood, especially since you have done tests to rule out the major blood-borne illnesses. To be completely up front with you this will not be an easy mystery to solve, but it is exactly the type of problem that MetaMed is specially equipped to deal with. If you haven't seen it before, this is the link to a story on National Public Radio of the work we did with a similar mystery case, whom no one else could diagnose:
(link)

The first step to helping you determine what is going on and to resolve it would be to broaden the scope of our search. It is likely that there is an underlying problem that is being overlooked, and we need to make sure we don't overlook anything. We will search for anything unusual, or patterns in your symptoms or medical history.

After that we would explore each possibility in depth to determine the underlying cause. If necessary we can do modeling of you body's neurological and biochemical behavior at the molecular level to find very specific mechanisms that are overactive or underactive.

Finally, once the underlying issues are understood in depth we can find treatment options. That includes searching for treatments that only exist in other countries, and cutting edge technologies that are in clinical trials or haven't reached mainstream market yet.

One of the ways we differ from medical establishments that may be most helpful to you, is that we are looking for the actual mechanics of what is going on in your body instead of trying simply to match you to a diagnostic "label." Your set of symptoms does indeed seem rare, and it's possible there may not be a single diagnosis that matches. Instead of that being a dead end, we've worked with a number of patients who didn't have a clear "diagnosis" and were able to help them by addressing the imbalances in how their body was working and get them back to a better state of health.

Attached is some more information about what we do, if you would like to continue learning more.

Let's make time to talk this week. My schedule is fairly open Wednesday and Thursday, or most times during the weekend. I am on Eastern time, and imagine you are 6 hours ahead of me? I can be available during my early mornings as well to accommodate the time difference.

I look forward to speaking with you and to helping you get well.

Best regards,
Brenda Mathisen
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replied November 6th, 2014
Experienced User
JAPAN WORKING ON HTLV TESTING IMPROVEMENT

Reevaluation of confirmatory tests for human T-cell leukemia virus Type 1 using a luciferase immunoprecipitation system in blood donors.
Furuta RA1, Ma G, Matsuoka M, Otani S, Matsukura H, Hirayama F.
Author information

Abstract
BACKGROUND:
Recently, Japanese Red Cross blood centers have changed the confirmatory test method from an indirect immunofluorescence (IF) technique to Western blotting (WB) for antibodies against human T-cell leukemia virus Type 1 (HTLV-1). In this study, these HTLV-1 tests were assessed using another sensitive method, that is, a luciferase immunoprecipitation system (LIPS), to identify a better confirmatory test for HTLV-1 infection.
STUDY DESIGN AND METHODS:
Plasma samples from 54 qualified donors and 114 HTLV-1 screening-positive donors were tested by LIPS for antibodies against HTLV-1 Gag, Tax, Env, and HBZ recombinant proteins. The donors were categorized into six groups, namely, (Group I) qualified donors, screening positive; (Group II) IF positive; (Group III) IF negative; (Group IV) WB positive; (Group V) WB negative; and (Group VI) screening positive in the previous blood donation, but WB-indeterminate during this study period.
RESULTS:
In Groups II and IV, all plasma samples tested positive by LIPS for antibodies against Gag and Env proteins. In Group V, all samples tested negative by LIPS, whereas some Group III samples reacted with single or double antigens in LIPS. In Group VI, the LIPS test identified a donor with suspected HTLV-1 infection. The first case of a blood donor with plasma that reacted with HBZ was identified by LIPS.
CONCLUSION:
Reevaluation of the current HTLV-1 screening method using the LIPS test showed that both confirmatory tests had similar sensitivity and specificity only when WB indeterminate results were eliminated. LIPS is a promising method for detecting and characterizing HTLV-1 antibodies.
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replied November 6th, 2014
Extremely eHealthy
American Journal of Hematology, Volume 71, Issue 2, Article first published online: 26 SEP 2002:

To investigate the prevalence and significance of tax-only integration, PCR amplification of tax should be encouraged even in HTLV-I-seronegative individuals, depending on the clinical and hematological features.

onlinelibrary dot wiley dot com slash doi slash 10.1002 slash ajh.10183 slash pdf
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replied November 6th, 2014
Extremely eHealthy
Notice the "even in" clause.
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replied November 6th, 2014
Experienced User
That's interesting. However, I tested for Htlv by PCR and it was negative. So, I decided to move on and here's what I'm gonna do: Next Generation Sequencing, a technique capable of detecting any foreign DNA or RNA, i.e. any infectious agent.

Here I copy and paste the reply of a virologist to another forum's user presenting symptoms after an infectious event:

---
I have studied the list of symptoms you and your colleagues suffer from and have also discussed your letter with an infectious diseases specialist. We think that it is probably not useful to narrow the search for a cause of these symptoms to infectious agents alone. Much of it also occurs in connection with autoimmune diseases. Thus, our advice is to contact not just infectious diseases specialist, but also doctors specialized in internal medicine.

Regarding retroviruses as possible causative agents of autoimmune diseases we have screened all such diseases with the PERT assay, the ultrasensitive test you are referring to. To our disappointment, we did not find any new retroviruses. We have also tested quite a number of individuals with symptoms similar to those of your community and found nothing. A similar test was developed at the U.S. Centers for Disease Control at about the same time, and they also must have checked everything and did not find a new retrovirus. Thus I believe that a retrovirus is very unlikely to be the cause of your disease(s) and that testing of your community will serve no purpose.

In case your hypothesis of an infectious agent were true nevertheless, it would probably be more useful not to look just for retroviruses, but to turn to next generation sequencing, a method capable of detecting any foreign DNA or RNA present in the body, i.e., all infectious agents. The problem is of course that your community is spread out over the globe; it will thus be difficult to conduct a scientific study.

I am sorry that I cannot be of more direct help.

Kind regards

Jorg Shupbach

---


Concerning MetaMed, I talked to them but it's too expensive. So I'm trying to have NGS done here in Italy. I'll let you guys know.
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replied November 6th, 2014
I have it all mostly around my buttocts, legs, laps, feet and arm.
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