Medical Questions > Conditions and Diseases > HIV and AIDS Forum

Certain HIV positive, but negative tests (Page 55)

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....

November 15th, 2012
Experienced User
TONY.

i am not ruling out htlv, but just wonder if we still so sure about it. When we r getting so many symptoms it is gard to explain why they cannot be found in blood. While we r talking abiut inhibiting its replication, it couldnt even be found in blood
|
Did you find this post helpful?

replied November 15th, 2012
Experienced User
It could be reasonable if we r asympothatic and so no htlv detected in blood. But for us it shouldn't be the case.
|
Did you find this post helpful?

User Profile
replied November 15th, 2012
Extremely eHealthy
One,

You're right - symptoms should imply a positive test. If you read the research articles, there's many people in South America with our symptoms & negative testing. The scientists are going crazy like we are, ordering multiple PCR tests. Since we haven't taken the Western Blot / Line ImmunoAssay, it's worth trying.

Best wishes.
|
Did you find this post helpful?

replied November 16th, 2012
Hi dear friends after all abnormal blood tests I did another antibody test for htlv yesterday it was Architect CMIA test and result is negative, it was after 10 month 22 days after my risk, can anyone tell me what is Architect CMIA test and hot accurate this test is ? I did this privately, because dr in htlv clinic London refuse me to test any more and they think window is 3 month and last time when they test me it was 6 month past of my risk.
I showed my all abnormal blood results but he said to belive on him he is Dr. It is nothing to do with Htlv, now htlv clinic every one think I m crazy, even HIV clinic Black list me, and said not to come back to clinic any more because I am negative for HIV up to ten month.
My wife belive me that there is something wrong with my mental health, but what about my symptoms and abnormal blood results no one have any answer? Do u have? Please tell me about Architect CMIA test, is it good test?
|
Did you find this post helpful?

User Profile
replied November 16th, 2012
Extremely eHealthy
One,

You are doing the best that you can do in an insane situation - the doctors don't have answers, and sick people like you & me want answers. You're talking about being blacklisted, imagine people who are put into mental institutions for claiming that they are sick - it's actually happened. This disease doesn't just affect a few people on this forum, it affects 25 million people, and it's being actively ignored, so much so that doctors are throwing people out of their care.

(1) There needs to be better testing for HTLV - a truly conclusive test for the HTLV Tax protein would be a big improvement.

(2) There needs to be treatment for HTLV, either through Xeljanz or antiretrovirals such as AZT, TDF, etc. Telling a patient to go home and wait for paralysis, leukemia, and death is not treatment.

You're asking me if your Architect CMIA is good enough - I wish that I knew the answer, for you and for all of us.

Best wishes.
|
Did you find this post helpful?

User Profile
replied November 16th, 2012
Extremely eHealthy
One,

I did a quick search for "Architect CMIA HTLV" and found that a user on another forum had asked about it in May 2011, and got this reply:

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.
|
Did you find this post helpful?

User Profile
replied November 16th, 2012
Extremely eHealthy
One,

Does your wife have any symptoms?

The same site (PathLabTalk) had mention of HTLV testing from a lab worker in Costa Rica (notice that the Western Blot is the final test):

We in Costa Rica, performe HTLV in microplates. Murex 4 years ago, and Diasorin, now at days. because, HTLV, has a very low prevalence in our population, so many false positives are found. i can tell that 1-2% of our donors test positive for HTLV. We repeat it two times more from pilot tube and two form the bag. (previosly centrifugation at 3000 g). if it continuos positive, we perform a western blot for HTLV. mostly are negative.
|
Did you find this post helpful?

replied November 17th, 2012
Thanks tony for your hard work, but what I understand after reading your post is that the lab do western bolt test to confirm any positive result, and most of the cases the positive result the lab get with antibody, they find them negative with western bolt, am I right? I mean antibody test is more sensitive the western bolt, ? They did not mentioned that they find any case antibody negative become positive with western bolt, am I right or not? My mother toung is not English so might be I miss understand but can you tell me what I want to say is wrong or right? Any ways I will try to get that letter from htlv dr on Monday in which he define that after all my abnormal blood test why he think I have no std, I need to wait up to Monday I will share htlv dr views, even he stop me to do any more test but I did privately, because with all other issues I had swear eyes pain from last 6 month now, and yesterday I went eye hospital, and they toled me my eyes are inflamed, and it happens in htlv too.
As u asked my wife how she is feeling? Answer I never did unprotected sex with my wife from last 11 months she had oral twice on me, but she is feeling weekends, tired, and pain in legs, and she do not tell me much about her because I start getting worried so soon now a day God bless us all.
|
Did you find this post helpful?

User Profile
replied November 17th, 2012
just got my 6 month hiv htlv test...negative. i still have muscle symptons..sunken eyes, redness around my eyes accompanied by spider veins. i also have wasting in arms,legs and back. my guess is that i contracted an bacterial infection from the sex worker. my family has these syms too. seing my dr to find out what is realy going on..it is not hiv or htlv..
|
Did you find this post helpful?

replied November 18th, 2012
Experienced User
htlv
The human T lymphotropic virus type-1 (HTLV-1) was the first human retrovirus identified. The virus is transmitted through sexual intercourse, blood transfusion, sharing of contaminated needles or syringes and from mother to child, mainly through breastfeeding. In addition to the well-known association between HTLV-1 and HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP), several diseases and neurologic manifestations have been associated with the virus. This review was conducted through a PubMed search of the terms HTLV-1, immune response and neurological diseases. Emphasis was given to the most recent data regarding pathogenesis and clinical manifestations of HTLV-1 infection. The aim of the review is to analyze the immune response and the variety of neurological manifestations associated to HTLV-1 infection. A total of 102 articles were reviewed. The literature shows that a large percentage of HTLV-1 infected individuals have others neurological symptoms than HAM/TSP. Increased understanding of these numerous others clinical manifestations associated to the virus than adult T cell leukemia/lymphoma (ATLL) and HAM/TSP has challenged the view that HTLV-1 is a low morbidity infection.

It is also not true that only 5% of infected get ATL or HAM TSP. The percentage is even higher, but medical authority and govt has hidden this from general public due to their faliure to find proper treatment or cure on this disease
|
Did you find this post helpful?
Users who thank adviseme for this post: TonyDewitt 

User Profile
replied November 19th, 2012
Extremely eHealthy
onechanceplz,

We're all in the same boat - reading the posts by you & nhguy78, there's definitely a shared pattern of symptoms. Muscle wasting, back pain, etc. And like you, I gave the disease through oral sex to two other women - so much for the "it can't be transmitted orally" belief. And the doctors don't have answers, so that's why I am suggesting the Western Blot / Line Immunoassay test. If we don't try it, we won't know if it works. Same advice that I am giving on the Xeljanz medication - ask your doctor to get a one week trial dosage from Pfizer and if it resolves your symptoms, then great! If not, then you've also learned something and at least tried something.

nhguy78,

I am experiencing the EXACT SAME symptoms as you, along with 29 other people that I know. We have all been to doctors, and they all have come up empty on answers (and treatment). I am not a doctor, but would suggest the same test (Western Blot / Line Immunoassay) and the same trial medication (Xeljanz).

AdviseMe,

Thanks for your post - again, I hope everyone who reads your post realizes that the medical industry is living in fantasy land regarding HTLV. I agree that 5% of everyone becoming paralyzed or dead is complete nonsense. That's like saying only 5% of HIV patients die - we know that is not true.

Everyone,

I absolutely believe that we all have HTLV - not only do the symptoms match, but just like Sowadsky from the TheBody site said, the testing is unreliable. The difference between now and 30 years ago is that treatments are becoming available (thank God). Here are some HTLV treatment prospects:

(1) Xeljanz - inhibits JAK, which inhibits HTLV by 60-80% over a six day period. Would a year's dosing of Xeljanz cure us? We won't know until we try.

(2) Azacytidine - eight month dosing cured a HTLV patient in Greece.

(3) Draco - a broad spectrum antiviral by Dr. Todd Rider, but still in testing and development stages, and bogged down due to lack of funding.

(4) Hyperthermia - heating the body to 111 degrees, provided by the Siberian Research Institute. Alleged to be a cure in a paper by Hatanaka.

Please note that NONE of these treatments are perfect nor pleasant, but Im assuming that all of you would rather be doing something about this disease instead of waiting for paralysis and death.

Best wishes.
|
Did you find this post helpful?

replied November 19th, 2012
Experienced User
Breakthrough Nanoparticle Halts Multiple Sclerosis in Mice, Offers Hope for Other Immune-Related Diseases
ScienceDaily (Nov. 18, 2012) In a breakthrough for nanotechnology and multiple sclerosis, a biodegradable nanoparticle turns out to be the perfect vehicle to stealthily deliver an antigen that tricks the immune system into stopping its attack on myelin and halt a model of relapsing remitting multiple sclerosis (MS) in mice, according to new Northwestern Medicine research.
|
Did you find this post helpful?
Users who thank adviseme for this post: TonyDewitt 

replied November 20th, 2012
Experienced User
I'm about 10 months since my exposure and I still don't have any answers. The major symptoms I feel these days are pain in my leg joints and pain in my leg muscles sensitive under the armpits dry throat like something stuck in there. Cold chills random parts of the body. Also your pain once in awhile. Pain in my finger joints not all the time. Those are my symptoms today I have lost a lot of symptoms D symptoms today are not as bad as before. I'm trying to accept my new condition. But now me and my girlfriend I broke up. I find myself single and not able to talk to nobody. I would never want to infect anybody else. My conscience is too deep even if the doctor say I don't have nothin I know there's something wrong with me. I will keep testing and keep you guys updated. Thanks to everyone
|
Did you find this post helpful?
Users who thank Depressedman for this post: TonyDewitt 

replied November 20th, 2012
Experienced User
tony,

you mentioned about albeto;s case. did he get htlv tested postive?( i hope not) and how is he currently doing?
|
Did you find this post helpful?

replied November 20th, 2012
Experienced User
Hello Depressedman,

I am feeling pain in my finger joints as well. That's my main symptoms now. I am now 1 year & 1 month since my exposure and no diagnosis as yet. All the best my friend.
|
Did you find this post helpful?

User Profile
replied November 20th, 2012
Extremely eHealthy
D-man,

Sorry about your breakup, I have the same concern & guilt about infecting people, I've infected more than two dozen. I also share Ustas & your symptoms (throat, fingers, etc). Ustas & I have been infected about the same amount of time (13 months).

Hope,

Alberto did NOT test positive with the HTLV antibody test, he tested negative; much later, he got a doctor to give him the HTLV PCR test, which was positive. This is an important example of how testing negative on the HTLV antibody test does NOT guarantee that you're not infected. By the time he convinced a doctor to test him via PCR, he already infected his wife, who infected his young daughter. This is a very sad story not only for him, but for his wife & daughter as well. I have not heard from him in a while, the last time I heard from him he was diagnosed with Mycosis Fungiodes, which is skin related leukemia caused by HTLV. Perhaps the most important point is that Alberto was infected for only SEVEN years before his leukemia began, so these stories that people on get sick after 20, 30, 40, 50 years is yet another denial of the medical industry that HTLV is a much more serious disease.

Best wishes.
|
Did you find this post helpful?

replied November 20th, 2012
Experienced User
Hi tony, some more i would lije to check for..

HOW long he get tested for antibody after exposure?

How her daughter gets infected? Breastfeeding? Or casual contact.

Also, did alberto gets symptoms ibset as quick as us do?
|
Did you find this post helpful?

replied November 20th, 2012
Experienced User
Due to the fact that we are getting symptoms very quicjly? (Just days after exposure) , and we are not getting the textbook ham tsp symptoms, so would really love to know alberto's onset period and does he had all or symptoms?
|
Did you find this post helpful?

replied November 20th, 2012
Experienced User
I am seriously considering hyperthermia. Because even if its not htlv 1. I believe it helps. But i couldnt find any institute willing to do this provided my disease is unknown. Tony, u get any reach of these institute?
|
Did you find this post helpful?

User Profile
replied November 20th, 2012
Extremely eHealthy
Hope,

Alberto never tested HTLV antibody positive, just PCR positive, he was being tested for at least two years. I think that we are all experiencing textbook ham/tsp symptoms, and yes, Alberto had those symptoms too. Yes, his daughter was infected via breastfeeding.

I had a phone call recently from the Siberian Research Institute, they'll perform the hyperthermia. Of course, that requires that you go to Russia to get it done. If they were more local, I would get the procedure done. If you send me a private message, I will forward their contact information to you.

Best wishes.
|
Did you find this post helpful?