Medical Questions > Conditions and Diseases > HIV and AIDS Forum

Certain HIV positive, but negative tests (Page 25)

Must Read
Do you know what causes HIV? Get started by learning the facts on HIV and AIDS here....
Do you know what puts you at high risk of HIV? Debunk the myths and get the facts of HIV risk factors here....
Can you identify early HIV symptoms. Learn what to look for and when to seek medical help as we review symptoms of HIV here....

June 14th, 2012
Experienced User
Depressedman, the reason why htlv dosent shows on antibody is caz htlv seroconversin takes long and has long window period for exposure through sexual contact.some one in uk has all symptoms but tested negatie at week 22, but now at week 25 he did a blood count and his white cell count is above normal. Means htlv increases cd4 level count.
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
Docts are now not willing to run any More htlv test on him and suggested him a psychologist They say htlv 3 months conclusive and u dont have it, with the fact that his cd4 level are gone high now and still has all symptoms.
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
Docts are now not willing to run any More htlv test on him and suggested him a psychologist They say htlv 3 months conclusive and u dont have it, with the fact that his cd4 level are gone high now and still has all symptoms.
|
Did you find this post helpful?

User Profile
replied June 14th, 2012
Extremely eHealthy
That's crazy - a patient with a high T-cell count AND symptoms should be able to get a PCR test for HTLV. The world is insane.
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
Tony u did your pcr at day 137 came back negative. How can we rely on pcr test if it detects early infection within window period.
|
Did you find this post helpful?

User Profile
replied June 14th, 2012
Extremely eHealthy
Testing is complicated
AdviseMe,

When we are dealing with HIV, patients have either high numbers of HIV virus particles or HIV antibodies suppressing the virus - in either case, the infection is detectable. With HTLV, since the viral reproduction is relatively lower than HIV, PCR testing isn't always conclusive. Also, no lab has invested in state of the art PCR testing for HTLV, like has been done for HIV - current HIV PCR testing is extremely fine, down to 10 or 20 copies of HIV. No one has published HTLV PCR testing accuracy, so I strongly suspect that it's not as fine as HIV PCR testing is. So just like HIV forum staff won't accept PCR testing as conclusive (since a 20 copy PCR test won't catch 19 copies of HIV), I suspect that HTLV PCR testing is even less accurate.

Again, it would be great if the 51 day window for HTLV antibodies was as concretely conclusive as the three month window for HIV antibodies. Then, people would get tested outside the window, and know for sure if they are infected or not. One of the people who contacted me through the forums (Alberto from Italy), said that it took him longer than two years to even test positive on the HTLV PCR test, while still experiencing symptoms. Yes, two years is a ridiculously long period of time to have to wait to get a diagnosis. Because HTLV disease progression is associated with antibody development, he doesn't want to even use that test. In addition to his own infection, his wife and young daughter are also infected and experiencing symptoms.

We all would like this nightmare to end tomorrow. We are all sick and wish that this never happened. We are not only concerned about our own health, but the health of friends, lovers, and family as well.

Best wishes / HTLVhelp
|
Did you find this post helpful?

User Profile
replied June 14th, 2012
Extremely eHealthy
Here's a page discussing HTLV PCR testing in the UK:

St. Mary’s hospital London, part of the Imperial NHS Trust, is the national referral centre for HTLV infection. Details of the service can be found at www.imperial.nhs.uk/stmarys/ourservices/ht lvservice. MDU provides diagnostic tests in support of this service.

HTLV-I DNA viral load measurement for diagnosis and monitoring of disease in individual patients infected with human T-lymphotropic virus types 1 & 2.

An in-house method to measure HTLV-1/2 viral load in patient peripheral blood mononuclear cells (PBMC) is used. Primers are specific for HTLV-1 and HTLV-2 Tax gene. HTLV-1 or 2 DNA copy number and -globin gene copy number of each sample of extracted PBMC DNA are quantified using real-time quantitative PCR monitored by SYBR Green I dye incorporation in a Roche LightCycler 1.5. HTLV-1 copy number is estimated by interpolation from standard curves and is expressed as HTLV-I DNA copies per 100 PBMCs. When extracted DNA has appropriate -globin gene copy number but no quantifiable HTLV-I DNA is amplified using the RealTime PCR, a PCR is carried out using nested primers specific for HTLV-1 or for HTLV-2 (see typing section below). PCR products are detected on an ethidium bromide stained agarose gel.

HTLV typing by PCR

To discriminate between HTLV-1 and HTLV-2 infection.
Test details (back to top)

PCR amplification of the tax gene sequence of HTLV DNA extracted from PBMCs is performed. PCR is carried out using generic outer primers in the first round and discriminatory inner primers in the second round. PCR products are detected on an ethidium bromide stained agarose gel. HTLV-1 , HTLV-2 and negative controls are run in parallel.

HTLV clonal analysis

To facilitate rapid detection of Adult T-cell Leukaemia/Lymphoma. The method can also be used to monitor therapy response and provide early detection of relapse/remission.

Test details (back to top)

The test is performed to determine whether the dominant integration sites of HTLV-I are monoclonal, oligoclonal or polyclonal, using a vectorette linker and specific proviral primer BIO2. Patients’ DNA is extracted and digested with the restriction enzyme HindIII. The vectorette unit is ligated to the restriction digested DNA fragments and then used as a template in a two-step touchdown PCR to allow amplification of DNA between the known sequence of of HTLV-I and the vectorette unit. After PCR amplification the clonal pattern is analysed by electrophoresis of the amplicons on a 1.5% agarose gel.

Turnaround time (back to top)

We aim to issue reports within two weeks of receiving sample. However turnaround times may be extended if repeat testing is required.

Suitable Samples:
Whole EDTA blood. CSF to arrive at MDU within 24 hours of venesection/lumbar puncture.

If requesting CSF HTLV-1 DNA viral load send sample EDTA whole blood obtained at the same time point.

Molecular HTLV tests are provided to UK NHS centres free of charge by the National Centre for Human Retrovirology.

Charges for other uses:
HTLV DNA qPCR
HTLV typing by PCR
HTLV clonal analysis

80
70
130
|
Did you find this post helpful?

User Profile
replied June 14th, 2012
Extremely eHealthy
Here's an excerpt from a paper FIFTEEN years ago reporting that HTLV testing misses about 25 percent of the infections (false negative), and recommends that the testing be changed to include the HTLV Tax protein and/or nucleic acids (apparently NONE of these recommendations were implemented, so how can we trust HTLV testing?):

A few years ago, when it was realized that infection with HTLV-II was not always detected by serologic tests then in use, type II-specific antigens were included in test kits. The time has come once again to reevaluate currently used methods for the detection of these viruses. Either the inclusion of HTLV Tax protein in serologic test kits or more sensitive techniques incorporating simultaneous amplification of several relevant nucleic acid sequences by an automated system as has been suggested elsewhere could be introduced to screen our blood supply for HTLV more reliably.
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
spoke to my doc, he had few suggestion from neurologist. My doc has planned me to keep me on antibiotics to relieve my symptoms and then taken tests antigen and antibody test.
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
my hands and fingers started pilling yesterday. It's sad that we don't know what the hell we have, but yet the one who gave it to us probably does. About HTLV, what if all of us test for HTLV and it comes back negative on all of us, Then what? I'm sorry, but if all of us test negative for HTLV, there's just no way it's going to come up negative on all of us if we have it. I just don't believe it, yes we may have the samething, but we all have a different system. I can see it given a couple people false negatives, but not all of us. Or, a couple people may not have antibodies for HTLV, but it's NOT going to do it to all of us. I just don't believe that at all. That's just not even heard of, cause like I said we ALL have a different system. The only thing that we have the same of, and that's this stupid virus that I'm afraid that can't be cured.
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
similar symptoms
I am sure we dont have same infection, caz all our exposure were different.Many of our symptoms are similiar.I pary to god it isint HTLV or any other virus that hasent any cure.
|
Did you find this post helpful?

User Profile
replied June 14th, 2012
Extremely eHealthy
AdviseMe,

I assume that all of our exposures were the same in the sense that we were infected sexually; unless anyone states otherwise, I will assume that's true for everyone here.

Dalton,

I understand your suffering - I can barely moved the fingers on my hand. I also see your point about how can all of us test negative. Our best bet is DFrank, since he has been sick longer than all of us combined. Perhaps his testing will give us an idea of what's wrong with us. Whether we all have HTLV or none of us have HTLV, the doctors aren't going to do anything for us. If it is HTLV, at least we can look forward to getting the Azacytidine treatment someday, which cured a patient in Greece after 8 months.

Here are some anti-HTLV therapies that all of you could also try:

(1) Green Tea tablets - green tea is a demethylating agent, which inhibits the ability of the virus to hide in cells & reproduce.

(2) Curcumin tablets - the spice Tumeric in tablet form, also active active HTLV.

(3) Fucoidan tablets - a seaweed extract that is a polysaccharide, which inhibits HTLV's ability to infect cells.

(4) Shiitake mushroom extract - another polysaccharide.

(5) Black licorice - another polysaccharide.

(6) Heat - heat kills viruses, and HTLV is especially susceptible to heat. A Japanese researcher even speculated that intense heat therapy could cure HTLV. Try taking hot baths, sleeping with blankets, wearing extra layers of clothes.

Best wishes / HTLVhelp
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
My doctor calls it internet diagnosis, when i said i am pretty much convinced i have HTLV. But dosent wanna accept that he is unable to diagnoise anything for my symptoms.
|
Did you find this post helpful?

User Profile
replied June 14th, 2012
Extremely eHealthy
AdviseMe,

You have some very classic symptoms of HTLV - I suggest that you ask your doctor to give you the PCR test for HTLV. Like Dalton said, the chance of all of us testing negative for HTLV is zero. And like I said to Dalton, whether we all have HTLV or none of us have HTLV, the doctors aren't going to do anything anyway.

Best wishes / HTLVhelp
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
im 100 percent sure non of you have htlv..
|
Did you find this post helpful?

User Profile
replied June 14th, 2012
Extremely eHealthy
Uk,

Did you ever get diagnosed with anything? Or did you just start to suddenly feel better?

Best wishes / HTLVhelp
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
mines was anxiety...

and my symtoms was so small,,,..but im given up loooking whats wrong with me..after month i just feel better..but i stopped looking for symptoms ..then feel better..

i only diagnossed with clamidya..that was it
thanks to god.. no more mistake..
god always gives second chance
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
i thought i had swollen neck node but i scanned my neck anf there was no swollen.
|
Did you find this post helpful?

User Profile
replied June 14th, 2012
Extremely eHealthy
Well, chlamydia can certainly make you feel miserable, I am glad that you were diagnosed and that you are feeling better. However, the rest of us are still sick.

Best wishes / HTLVhelp
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
yes clamidya cleared up.when u say still sick ?what sick ?like ?
|
Did you find this post helpful?

replied June 14th, 2012
Experienced User
yes clamidya cleared up.when u say still sick ?what sick ?like ?
|
Did you find this post helpful?