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Certain HIV positive, but negative tests (Page 52)

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September 28th, 2012
Extremely eHealthy
Hope,

I believe that the point of the Brazilian testing algorithm for HTLV is to leave the protein testing (Western Blot) until the end of the testing sequence in order to optimize money (i.e. if someone tests positive on the previous two antibody tests and the PCR test, that's a triple confirmed positive). However, note that their testing algorithm STILL requires the Western Blot test if all three previous tests are negative (i.e. triple negative). I visited the Quest Diagnostics testing site and saw that they don't offer Western Blot, but offer Line Immunoassay, which checks for all the proteins of HTLV (p15, p19, p24, gp21, gp46, gp68/61). I am going to get this test after my one year anniversary in November, and suggest that all of you do as well.

Best wishes.
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replied September 29th, 2012
Experienced User
In china someone gets anti-interferon-y-autoantibodies tested positive with high titters. He claimed to have infected b sex.
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replied October 2nd, 2012
Extremely eHealthy
Active mom struck down by HTLV-1

LARA PICKFORD-GORDON Tuesday, June 20 2006

A ONCE active mother of three is now confined to a wheelchair due to complications from Human T-Cell Lympho Tropic Virus-1 (HTLV-1), a retrovirus associated with certain leukaemias and lymphomas.

Jean (not her real name) wrote a letter to the editor in an attempt to reach out to others who have also been diagnosed with HTLV-1 to share information and support. She said she hoped someone in the medical profession would read the letter and contact her to help.

It has not been easy coping, as she told Newsday in an interview yesterday.

Thirty-seven-year-old Jean said in 2000 she began staggering when she walked, and felt like she was going to fall.

I used to be a domestic and when I went to work, pushing mops, and scrubbing the floor caused pain in my back. When I was scrubbing the floor I would go down and could not get up. I had to stop working because I could not take the pain anymore.

Jean said her private doctor sent her for various tests an MRI, x-ray, urine and HIV tests, and it was only in 2004 that after a blood test she was diagnosed as having HTLV-1.

By this time she had severe back pain, and said her foot was weak, and she could hardly walk.

Jean said her doctor referred her to Prof Courtenay Bartholomew at the Medical Research Centre for an explanation of what was happening. Dr Bartholomew said it is a problem I can live with up to 100 years old. It cannot be cured.

Jean and her husband have also tried to research her condition on the Internet. She said most people have never heard about HTLV-1 or how it came about.

Jean was making some progress with a physiotherapist who visited her at her home in St Augustine but stopped coming because Jean could not afford to pay for regular sessions. My limbs get back weak and I cannot stand on my own. She is on medication for the stiffness in her legs, and she takes vitamins C and E.

Jeans husband, Harold, is upset by the change in his formerly active wife and recalled that she was a player on the womens cricket team in the area.

Then the back pains started and we made the rounds for treatment at different places. A lot of money was involved. The fees were exorbitant, he said.

Aqua therapy, physiotherapy, massages and counselling were all recommended.

Asked about how his family life has been affected, he broke down during the interview.

I cant talk about that, he said. Jean said, He takes it on. I try and be strong. The most I can do is pray and ask the Lord for a cure. Jean said her husband tried to get her into the physiotherapy at the Eric Williams Medical Sciences Complex.

The couple have three children ages 21, 17 and 13.

Human T-Cell Lympho Tropic Virus-1 (HTLV-1) is a proliferative disorder of T-cells (white blood cells which are involved in the identification of foreign antigens, and activation and deactivation of immune cells).

According to information on the Internet, HTLV-1 has high endemic rates in South America, northern Oceania, tropical Africa and the Caribbean basin. HTLV-1 can cause HAM HTLV associated Myelopathy which is a chronic progressive disease that can cause weakness and spasticity predominantly in the lower limbs. The virus can also cause ATL Adult T-cell leukaemia, neurological disorders, degenerative arthritic pain and inflammation of the uveal tract of the eye.

HTLV I and II can be transmitted from mother to child via breast-feeding or childbirth, through sexual contact, and through blood contact, either by transfusion or by reuse of injection equipment.

There is no specific treatment although steroids can help ease discomfort and drugs help relieve muscle spasm. Physical and occupation therapy is useful.
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replied October 3rd, 2012
Extremely eHealthy
In the United States, blood donors are being screened for infection with human T cell lymphotropic viruses I and II (HTLV-I/II) by serologic means, which detect antibodies to the structural proteins of these viruses. Because patients with mycosis fungoides (MF) usually do not have such antibodies even though their cells harbor HTLV-I Tax and/or pol proviral sequences, it was questioned whether the prevalence of HTLV infection among healthy blood donors may also be underestimated by current means of testing. To examine this possibility, a study on specimens of relatives of mycosis fungoides patients (MFR) was begun. In addition, to collect data more expeditiously, a cohort of former injection drug users (IDUs) was tested by routine serologic methods, as well as by PCR/Southern blot analysis for Tax, pol, and gag proviral sequences and Western blot analysis for antibodies to the Tax gene product. To date, 6/8 MFRs and 42/81 (51.8%) of HIV-negative IDUs proved to be positive for HTLV, whereas routine serology identified none of the MFR and only 18/81 (22.2%) of the IDUs. Among the latter test subjects, the incidence of HTLV-I also proved to be 10 times higher than expected. Therefore, it is likely that among healthy blood donors infection with HTLV-I/II is more prevalent than is currently assumed. Since Tax is the transforming sequence of HTLV-I/II, testing for Tax sequences and antibodies to its gene product may be desirable in blood transfusion and tissue donor facilities.
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replied October 5th, 2012
Experienced User
I've done a CBC and all is well. However, body is still aching. Everything is in range.
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replied October 6th, 2012
Extremely eHealthy
Ustas,

I had complete blood work done by a cancer doctor and got the same results - in range. Body is still aching as well. However, my platelets were high, and sure enough, that is a symptom of HTLV.

Best wishes.
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replied October 8th, 2012
Experienced User
htlv
Projet run by Dr Pooja Jain on DC for HTLV.
Project 3: Mechanistic aspects of DC:T cell interaction during HTLV-1-associated cancer and neuroinflammatory disease. HTLV-1 is the etiologic agent of two immunologically distinct diseases; adult T cell leukemia (ATL) and HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP), a chronic debilitating neuroinflammatory disease with similarities to MS. The humoral and cellular immune responses during HAM/TSP are directed to the HTLV-1 transactivator protein Tax that is oncogenic in nature. The molecular mimicry exhibited by anti-Tax antibodies to neuronal antigen (hnRNAP A1) and intense proliferation of chronically activated Tax-specific cytotoxic CD8+ T lymphocytes support the autoimmune nature of the disease. Therefore, HAM/TSP demonstrates a clear link between chronic viral infection and autoimmune disease of the CNS and allows for the direct comparison of the infecting agent with host antigens providing important insights into the pathogenesis of MS and other neuroinflammatory diseases. This project deals with defining the role of various DC subsets (myeloid and plasmacytoid) in regulating Tax-specific CTL response and associated neuroinflammation under three different experimental settings: in vitro using primary DC culture systems, ex vivo in HAM/TSP patients, and in vivo in a mouse model of neuroinflammation. Ultimate goal of this project is to determine how DC biology can be harnessed to enhance or silence its function in a disease-specific manner.
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replied October 8th, 2012
Extremely eHealthy
Scared49,

Back on page 49 you said that your doctor was going to have an MRI done - what was the result of that?

Best wishes.
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replied October 9th, 2012
Hi great thread, thank you all for posting! I was unable to read all 50+ pages though so forgive me.

I have been sick for the last few months after a sexual encounter and I feel like I may be in a similar position as some of the previous posters very soon if my 12 week HIV test is negative, due to ongoing ill feelings. All of my tests have been neg. thus far.

I did see some of the above posts mentioning HTLV 1/2. Is this something I can ask my Dr. to test me for, or any other similar things out there?

I did ask for a blood culture but she refused to order, said it was not necessary, however I am feeling sick still every day and am ready to see someone else for 2nd opinion and pay in cash if I have to.

I appreciate any info. as this feeling and rash on my groin is lingering and I am very worried as they all have no idea what the cause can be, just what it is not.
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replied October 9th, 2012
Extremely eHealthy
StillDown,

A jock itch spray should quickly resolve the rash on your groin - use it once in the morning and once at night.

Regarding HTLV, expect FIERCE resistance from medical people when you mention it. Testing for HTLV is insane, the antibody test is not conclusive. You're better off taking the Western Blot / Line ImmunoAssay (LIA) where the different proteins of HTLV are tested for (p15, p19, p24, gp21, gp46). There's also a PCR test for HTLV, but it's not very conclusive.

Best wishes.
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replied October 10th, 2012
Experienced User
htlv test protine
This product is available Research Use Only (RUO).


Chemical & Biological Principles of the Procedure
The nitrocellulose strips are incorporated with HTLV-I viral proteins derived from native inactivated disrupted viral particles and genetically engineered proteins.
It has improved sensitivity and specificity for both the confirmation and differentiation of HTLV-I and HTLV-II seroreactivities. This is accomplished by incorporating MTA-1, a unique HTLV-I envelope recombinant protein (rgp46-I), K55, a unique HTLV-II envelope recombinant protein (rgp46-II) and GD21, a common yet specific HTLV-I and HTLV-II epitope envelope recombinant protein (rgp21).
Each strip also includes an internal sample addition control to minimize the risk of false negatives due to operational errors.
Individual nitrocellulose strips are incubated with diluted serum or plasma specimens and controls.
Specific antibodies to HTLV-I/II, if present in the specimen will bind to the HTLV-I/II proteins on the strips.
The strips are washed to remove unbound materials while antibodies that bind specifically to the HTLV proteins can be visualized using a series of reactions with goat anti-human IgG conjugated with alkaline phosphatase and the substrate, BCIP/NBT.
Of the proteins applied to the nitrocellulose strips, five are generally used to confirm the presence of antibodies against HTLV-I/II. These are the rgp46-I, rgp46-II, GD21, p19 and p24.Type-specific recombinant envelope protein rgp46-I is specific for HTLV-I, while rgp46-II is specific for HTLV-II; these antigens are used to differentiate between HTLV-I and HTLV-II infections.
GD21, a third recombinant envelope protein, is broadly immunoreactive with sera or plasma from HTLV-I and HTLV-II infected individuals. Two GAG proteins, p19 and p24, which are reactive to HTLV-I and cross-reactive to HTLVII, are used to confirm the presence of antibodies. It has been found that reactivity against p19 was greater than or equal to that against p24 in subjects who had HTLV-I infection confirmed by PCR. Conversely, p24 bands were stronger than p19 bands in persons who had PCR-confirmed HTLV-II infection. That is, if p19 is greater than or equal to p24, HTLV-I infection is suggested, and if p24 is greater than or equal to p19, HTLV II infection is suggested. 7,12
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replied October 10th, 2012
Extremely eHealthy
AdviseMe,

I'm assuming that this a newer type of HTLV test? Since it's "research use only", I'm assuming that the test isn't available for us to take?

How are you feeling? I'm experiencing lower back pain, mid spine pain, eye floaters, some minor dermatitis on my face. I'm planning on taking Tofacitinib when the FDA approves it in November, since it's active against HTLV, because I don't like the feeling that I am doing nothing about treating this disease, and that I am just sitting here waiting for paralysis, leukemia, and death. I hope that Tofacitinib will relieve the pain, and halt the progression to paralysis, leukemia, and death. I know some of us have been sick for years and feel like we're going to be okay, but Alberto from Italy came down with leukemia after only 7 years of being infected; to make matters worse, he passed it on to his wife & child.

I hope all of you can understand my point that simply maintaining our current (less than good) health is not sufficient, we need treatment! If the way that I feel today is the worst that it would get for the rest of my life, I'd thank God and let it go. But knowing people like Alberto (HAM & ATL), and Derrick (HAM) & Effie (ATL) on the HTLV help face book page, I know that this disease isn't going to be idle. I might be the first person in history to take Tofacitinib for HTLV, but I'd rather do that than wait to be crippled with HAM or dead from ATL. And if that doesn't work, I'll do the hyperthermia treatments - I got a call from Russia a few days ago, they're willing to give me the treatment. And if that doesn't work, I will keep looking to try something else. I feel like I don't have a choice, it's either do something or lose my legs and / or my life.

Best wishes.
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replied October 11th, 2012
Experienced User
Tony, i am feeling all your symptoms, Back pain, eye floaters, leg weakness, spinster disturbance on body and my legs keep shaking for no reason when i fold them on bed.sounds funny but i know that these are all signs of HAM TSP due to HTLV.
Unfortunately i would not be able to try Tofacitinib due to cost of it, i assume it would be $24000 a year and surely i cannot afford that cost. Good luck to you Bro, hope Tafcotinib works and stopa this nasty disease progression due to HTLV.
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replied October 11th, 2012
Extremely eHealthy
AdviseMe,

Thanks for the validation on the symptoms, at least I know that I am not going insane for feeling the way that I do. I know neither of us asked for this, nor wanted this, and that we were both careful - all the more that irony is so cruel. Yes, the pricing of Tofacitinib is outrageous, the public doesn't even know the exact price yet, since the drug company hasn't set it yet.

Best wishes.
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replied October 12th, 2012
Experienced User
Antibody transfection into neurons as a tool to study disease pathogenesis.
Douglas JN, Gardner LA, Lee S, Shin Y, Groover CJ, Levin MC.
Source

Research Service, Veterans Administration Medical Center, Memphis, TN.
Abstract

Antibodies provide the ability to gain novel insight into various events taking place in living systems. The ability to produce highly specific antibodies to target proteins has allowed for very precise biological questions to be addressed. Importantly, antibodies have been implicated in the pathogenesis of a number of human diseases including systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), paraneoplastic syndromes, multiple sclerosis (MS) and human T-lymphotropic virus type 1 (HTLV-1) associated myelopathy/tropical spastic paraparesis (HAM/TSP) (1-9). How antibodies cause disease is an area of ongoing investigation, and data suggests that interactions between antibodies and various intracellular molecules results in inflammation, altered cellular messaging, and apoptosis (10). It has been shown that patients with MS and HAM/TSP produce autoantibodies to the intracellular RNA binding protein heterogeneous ribonuclear protein A1 (hnRNP A1) (3, 5-7, 9, 11). Recent data indicate that antibodies to both intra-neuronal and surface antigens are pathogenic (3, 5-9, 11). Thus, a procedure that allows for the study of intracellular antibody:protein interactions would lend great insight into disease pathogenesis. Genes are commonly transfected into primary cells and cell lines in culture, however transfection of antibodies into cells has been hindered by alteration of antibody structure or poor transfection efficiency (12). Other methods of transfection include antibody transfection based on cationic liposomes (consisting of DOTAP/DOPE) and polyethylenimines (PEI); both of which resulted in a ten-fold decrease in antibody transfection compared to controls (12). The method performed in our study is similar to cationic lipid-mediated methods and uses a lipid-based mechanism to form non-covalent complexes with the antibodies through electrostatic and hydrophobic interactions (13). We utilized Ab-DeliverIN reagent, which is a lipid formulation capable of capturing antibodies through non-covalent electrostatic and hydrophobic interactions and delivering them inside cells. Thus chemical and genetic couplings are not necessary for delivery of functional antibodies into living cells. This method has enabled us to perform various antibody tracing and protein localization experiments, as well as the analyses of the molecular consequences of intracellular antibody:protein interactions (9). In this protocol, we will show how to transfect antibodies into neurons rapidly, reproducibly and with a high degree of transfection efficiency. As an example, we will use anti-hnRNP A1 and anti-IgG antibodies. For easy quantification of transfection efficiency we used anti-hnRNP A1 antibodies labelled with Atto-550-NHS and FITC-labeled IgG. Atto550 NHS is a new label with high molecular absorbtion and quantum yield. Excitation source and fluorescent filters for Atto550 are similar to Cy3 (Ex. 556 Em. 578). In addition, Atto550 has high photostability. FITC-labeled IgG were used as a control to show that this method is versatile and not dye dependent. This approach and the data that is generated will assist in understanding of the role that antibodies to intracellular target antigens might play in the pathogenesis of human diseases.
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replied October 13th, 2012
Back to the original subject, i am going through the same thing. i had a exposure back in may. first i had night sweats, weight loss,rash and thrush ect. i have had 6 neg test as of october. right now i have muscle loss, dark circles and veins around eyes. my arms are boney and my feet hurt and i have a gaunt face. my family has the muscle loss with gaunt face dark circles,too. please help.
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replied October 13th, 2012
btw, the exposure was hiv and it was from am escort who had dark circles and a gaunt face
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replied October 13th, 2012
Extremely eHealthy
nhguy78,

You're way beyond the three month window for HIV, so the good news is that it's not HIV! However, your symptoms match mine & I suspect that we both have HTLV. If you want to be test for that, have a Western Blot (WB) or Line ImmunoAssay (LIA) done and see what protein bands are positive (p19, p24, etc).

Best wishes.
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replied October 14th, 2012
Have you done the test yourself and are you HTLV +
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replied October 14th, 2012
Extremely eHealthy
I've done the antibody test for HTLV several times (negative), and the PCR test (also negative), but still have not had the WB / LIA test, which apparently is more accurate.

Best wishes.
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replied August 11th, 2016
hi sir i got many symptoms of hiv after 4 month of sex date. is this possible that it will be hiv?i got symptoms like skin rashes joint pain and fever from last 4 days this all symptons after 4 week . in between 4 week i had nothing i was got high fever after 2 month from sex day then after i was fine but now after 4 month i have many symptoms like fever joint pain skin rashes is this all symptoms of hiv after 4 month?

what is after 12 weeks post exposure? its mean 12 week after sex day?
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replied October 16th, 2012
Experienced User
Tony.

Did you experience muscle distrophy?
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replied October 16th, 2012
Extremely eHealthy
Yes - my shoulders and hips and rear have experienced significant muscle wasting, which is also a HTLV symptom.

Best wishes.
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replied October 16th, 2012
i have wasting at temples with dark eye circles. my forearms are thinner in the last five months that i feel my bones. my children have pinkish circles around eye and my son eyes seems sunken and face seems drawn. i can see his spine along with ribcage.
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replied October 16th, 2012
Extremely eHealthy
The best I can say to you is to do the Western Blot / Line Immunoassay test for HTLV.

Best wishes.
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replied October 16th, 2012
Extremely eHealthy
I urge everyone to get the Western Blot or Line ImmunoAssay for HTLV, the protein bands that appear positive can indicate HTLV infection (p19, p24, etc). There's actually an acronym, HGIP, which stands for HTLV Gag Indeterminate Profile pattern (gag p19, p26, p28, and p30 without p24 or Env gp21 and gp46).

Best wishes.
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replied October 16th, 2012
Experienced User
So you believe the tofacibnib can stop this?
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