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Certain HIV positive, but negative tests (Page 90)

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August 15th, 2013
Extremely eHealthy
Demonstration of antibodies to human T-cell lymphotropic virus-I tax in patients with the cutaneous T-cell lymphoma, mycosis fungoides, who are seronegative for antibodies to the structural proteins of the virus
BA Pancake, EH Wassef, and D Zucker-Franklin
+ Author Affiliations

Department of Medicine, New York University Medical Center, New York 10016, USA.
Abstract

Although most patients with the cutaneous T-cell lymphoma, mycosis fungoides (MF), are seronegative for human T-cell lymphotropic virus-I or -II (HTLV-I/II) when tested by assays that measure only antibodies to the viral structural proteins, the majority of such patients harbor HTLV-I-related pol and tax proviral sequences that encode proteins not included in routinely used serologic tests. Tax mRNA has also been detected in their peripheral blood mononuclear cells (PBMC). Therefore, it seemed possible that these patients have antibodies to the tax protein. To investigate this, enzyme-linked immunosorbent assays (ELI-SAs) and Western blot assays were set up, using as antigens the full-length HTLV-I tax cloned from the prototypic HTLV-I-infected cell line, C91PL, and from PBMC of a MF patient, as well as a synthetic peptide made to the carboxy-terminal 20 amino acids of tax-I. Of 60 MF patients whose PBMC were shown to be positive for tax proviral DNA and mRNA, 50 (83%) were shown to have tax antibodies. The antigen derived from the MF patient was most useful in detecting such antibodies. These results demonstrate the need for including other HTLV-related antigens in addition to gag and env in serologic tests used to identify HTLV-infected individuals. The findings underscore the fact that individuals considered seronegative on the basis of currently used tests can be infected with HTLV.

Copyright 1996 by The American Society of Hematology
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replied August 16th, 2013
Experienced User
Guys,

I have another update. Now I've got many small red pimples on my shoulders and sides. Some of them are dry and some not. My birthmarks continue to grow, especially on arms and shoulders. No changes with "old staff". Still light pain in my knees and red eyes.
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replied August 16th, 2013
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JB,

Good to hear from you - I made contact with the doctor that has written the articles I just posted on HTLV infection without sero-positivity - I'm hoping that from those conversations, I will find a way to prove that I have HTLV. Please keep in touch, and feel free to call me anytime.

Best wishes.
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replied August 16th, 2013
Experienced User
Hey i read that you are trying to contact Dr. Zucker-Franklin i am also trying to contact him with no success. I know he is capable of obtaining the test described in his case studies, maybe we could convince him to order quest or Labcorp to draw our bloods and have that blood tested by him we could pay him for doing that for us. Maybe he will consider it if we both are willing.
I read that you talked to him, can you tell me what you guys talked about?
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replied August 19th, 2013
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DW,

I don't think that you are seeing the problem clearly - us going to a commercial lab for any standard testing has not panned out for us. When I contact researchers looking for testing, it's not for standard off the shelf commercial testing, it's for non-standard stuff done in a research lab. In other words, there's no test that lab-corp or any other lab has that will help us. However, the non-standard tests used in the research papers I posted will help us get a handle on this.

Best wishes.
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replied August 20th, 2013
Experienced User
Tony
I know, but you don't understand what I'm saying.
I'm not trying to have quest or Labcorp test our blood, I'm just saying that someone like Dr. Zucker or Poiesz could test our blood in their research laboratory by having quest or Labcorp draw our blood and have quest ship our blood to them at the temperature required and in the tube required.
Our blood will be delivered to zucker or poiesz, ready to be tested by them personally.
They have theese tools since this is how they conduct their research.
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replied August 20th, 2013
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Certainly any phlebotomist can take our blood, not just one in a commercial lab. Also I could drive to either of their offices and have it done there, since both of their offices are in driving distance of me. As always, it's a matter of which doctor is willing to work with us.

Best wishes.
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replied August 20th, 2013
Experienced User
Tony,
Unfortunately for me, I'm not within driving distance.
How will I be able to obtain these tests?
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replied August 20th, 2013
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DW,

I will let you know what I find out, but in the meantime you should do some networking yourself, like with those doctors you know that are willing to acknowledge (and possibly treat) HTLV. Finding a doctor willing to deal with this disease is KEY, and you (and everyone else) can find doctors by combing the published medical papers on HTLV - that's the approach I've taken. You're in California, which definitely has HTLV patients, since you already know one.

Best wishes.
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replied August 20th, 2013
Experienced User
Tony,
I have been combing the study articles for contact info and following up also.
I have been doing my best to network.
That is how i was able to talk to dr. Poiesz but as we both know most of these doctors give one chance and after that it becomes impossible to contact them again,
one example is shortly after i talked to Poiesz you tried contacting him and he unfortunately refused to reply or respond, this is because they see it as a waste of time.
I'm worried that if you talk to zucker he will do the same, once you talk to him he will no longer accept these types of phone calls.
This is why it's important to have a plan that will convince them to test out blood the first time we talk to them because most than likely it will be the only time we talk to them.
As for the patient i know he is not from california and infact he is closer to you than he is to me.
However i know that if i were diagnosed with htlv they would help me out whether i flew out to them or if i needed there reference to a doctor here in california, they would help me.
And you could count with that type of support also.
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replied August 16th, 2013
Experienced User
Tony,

I read those. I wonder if anybody is still researching HTLV in the US. The article was written almost 20 years ago. But any way this is good approach I think.

I'm going to schedule couple of appointments in Quest Diagnostics (I've never done any HTLV testing so far), therefore could you please suggest me the test types I should order? HTLV-I/II Antibody and WB?
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replied August 16th, 2013
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JB,

You can get the HTLV test using PCR, or the Western Blot test, or the antibody test. I listed them in order of most to least powerful. But as the French article I listed states, the strain of HTLV they found usually doesn't show up on any of the testing. This is why I am looking for the author of the articles, so they can tell me what I am supposed to do to be diagnosed.

Best wishes.
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replied August 16th, 2013
feet tingling but negative
Does anyone get tingling in their feet ?? yet neagative at 14 weeks ???
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replied August 18th, 2013
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Yes.
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replied August 16th, 2013
how did you go?/
Scared49 wrote:
Hi crazy dean, I know your probably like me not believing the test results, I have had every symptom in the book but 7 tests negative. All I can say is try to accept the results and every where I have read 13 weeks is conclusive so test out till then and no more risky behavior man it's not worth it. I have been living a nightmare the past 4 months I know how you feel. I'm still convinced I have it, thrush in the back of my throat, molluscum on my forehead and temple area, body aches, dry mouth, the list goes on and on. I just think my immune system is to weak to produce antibodies. I'm gonna test out till 26 weeks and then I'll let it go, so like the doctors say on all these forums believe the test results because symptoms mean nothing.
hey how did you go with your results and how are you now ??? Rolling Eyes
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replied August 18th, 2013
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Riley,

Scared & I are almost at the TWO YEAR mark (in November), so we are way past the window period for HIV. We've both taken a multitude of tests (all negative). I'm absolutely convinced that this is HTLV and am trying to pursue treatments for that.

Best wishes.
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replied August 16th, 2013
whats goingon ??
Scared49 wrote:
Hi guys, I got my HIV test result back from my doctor today = 1.00 Non Reactive which is negative they said. My WBC count came back low at 3.7 which worries me, I've read cancer can cause this. Is it possible that HIV affected my body so fast that I developed a type of cancer and it's making my body unable to produce antibodies? I'm 34 years old and thought I was in pretty good health. My hep b result was negative but my hep c result was 0.1 which is still negative but why the 0.1 number instead of just negative like my hep b result? My serum creatinine level was also low at 0.74 the normal level is 0.76- 1.27. It's been 18 weeks since the exposure I had I just never felt like this before the exposure. I hope it's not leukemia I've read that people with HIV are at high risk for developing leukemia. My wife sees her blood specialist tommmrow so I'll find out whatever is wrong with her also hopefully nothing serious. I also read CMV can cause a lot of the symptoms we've been experiencing, and is a very common virus that affects different parts of our bodies. I'm starting to get really worried again here guys I was just starting to let the HIV thing go this makes 8 negative tests now. I guess I'll just have to work with my doc to try to figure this out. Any ideas guys I'm also having trouble sleeping on my sides I feel pains on both sides of my stomach sometimes to, I don't know if it's my kidneys, my liver, or my spleen. Something's not right I know it Im lost here guys.




hey scared going through the same as you body aches tingling feet but 14 weeks negative 4yh gen test did you find anything out yet ???
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replied August 18th, 2013
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Riley,

HTLV.
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replied August 16th, 2013
Experienced User
Riley,
What was your exposure? Where are you from?

You don't have hiv. Try test for htlv 1/2. I've tested both fter 6months and both neative but I still have symptoms
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replied August 17th, 2013
Hey I just posted my exposure for you n I'm from Australia and we do 4th gen blood testaed below whoknows1
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replied August 17th, 2013
T
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replied August 17th, 2013
Hey my exposure was brief unprotected sex with a sex worker maybe less then a minute two days later started geting tingling and wave feeling in my body followed by brain fog n dizziness I also developed neck/ jaw pain and headaches I just felt uncomfortable was tested at 6 weeks full std screen come back negative I then started to get nause and tingling in the feet lately I have developed a chest infection and wierd shooting pains under my arms if kinda fes like my body vibrates was tested at 12 & 14 weeks again result negative but don't feel normal what u think sound familiar ??
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Users who thank Rileyocool for this post: Whoknows1 

replied August 17th, 2013
Experienced User
Riley, I am also from australia. Please check your inbox.. You don't have hiv.
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replied August 17th, 2013
Experienced User
Rilyocool,
I know for a fact whoknows is a good source of information for you, since he is from Australia also.
You might be able to talk to him by phone.
Let us know how it goes for you.
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Users who thank Definatelyworried for this post: Rileyocool 

replied August 18th, 2013
Experienced User
My soft stools now have evolved to almost chronic diarrheaand it is also floating all the time. I even have noticed big slices of tomatoes in my feces, which didn't digest at al!
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replied August 18th, 2013
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M,

I am taking 4 curcumin (tumeric) tablets for breakfast every day, they have gone far in resolving my stool problems, you should try them too.

Best wishes.
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replied August 18th, 2013
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PS: Scared, same goes for you, since I recall you saying the same about your stools. The site I used to order the curcumin tablets is Tumeric-Curcumin dot com.
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replied August 19th, 2013
Extremely eHealthy
AIDS Res Hum Retroviruses. 2010 Jan;26(1):33-40. doi: 10.1089/aid.2009.0124.

LGL leukemia and HTLV.

Thomas A, Perzova R, Abbott L, Benz P, Poiesz MJ, Dube S, Loughran T, Ferrer J, Sheremata W, Glaser J, Leon-Ponte M, Poiesz BJ.
Source
Department of Medicine, State University of New York, Upstate Medical University, Syracuse, 13202, USA.
Abstract
Samples were obtained from 53 large granular lymphocytic leukemia (LGLL) patients and 10,000 volunteer blood donors (VBD). Sera were screened in an HTLV-1 enzyme immunoassay (EIA) and further analyzed in peptide-specific Western blots (WB). DNAs were analyzed by HTLV-1, -2, -3, and -4-specific PCR. Forty four percent of LGLL patients vs. 0.12 % of VBD had anti-HTLV antibodies via EIA (p < 0.001). WB and PCR revealed that four LGLL patients (7.5%) vs. one VBD patient (0.01%) were infected with HTLV-2 (p < 0.001), suggesting an HTLV-2 etiology in a minority of cases. No LGLL patient was positive for HTLV-1, -3, or -4, whereas only one EIA-positive VBD was positive for HTLV-1 and none for HTLV-3 or -4. The HTLV EIA-positive, PCR-negative LGLL patients' sera reacted to epitopes within HTLV p24 gag and gp21 env. Other then the PTLV/BLV viruses, human endogenous retroviral element HERV K10 was the only sequence homologous to these two HTLV peptides, raising the possibility of cross-reactivity. Although three LGLL patients (5.7%) vs. none of 110 VBD patients tested positive for antibodies to the homologous HERV K10 peptide (p = 0.03), the significance of the anti-HTLV seroreactivity observed in many LGLL patients remains unclear. Interestingly, out of 36 HTLV-1-positive control subjects, 3 (8%) (p = 0.014) were positive for antibodies to HERV K10; all three had myelopathy. Out of 64 HTLV-2-positive control subjects 16 (25%) (p = <0.001) were positive for HERV K10 antibodies, and 4 (6%) of these had myelopathy. Out of 22 subjects with either HTLV-1 or -2 myelopathy, 7 (31.8%) were positive for HERV K10 antibodies, and out of 72 HTLV-infected subjects without myelopathy, 12 (16.7%) were positive for anti-HERV K10 antibodies (p = 0.11). The prevalence of anti-HERV K10 antibodies in these populations and the clinical implications thereof need to be pursued further.
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replied August 19th, 2013
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When a patient with a puzzling history of recurrent fevers and infection was referred to him, Loughran studied her blood smears and noticed something no one else had — the granular lymphocytes in her white blood cells were unusually large and all looked uniformly the same. This characteristic would be significant because it demonstrated the cells are clonal — one cell becomes abnormal and begins copying itself over and over.

Loughran began reviewing other patient cases and found nearly 20 more people who fit the same criteria but had not been diagnosed. Though this type of leukemia had likely been around for some time, it might have been misdiagnosed as another kind of leukemia or as an autoimmune disease such as rheumatoid arthritis because LGL leukemia causes inflammation that is very similar to rheumatoid arthritis, Loughran said.

These cells are part of the normal immune system but they are usually dormant and only become active when necessary to fight off a virus. With LGL leukemia, however, the cells remain active and clone themselves and eventually attack the bone marrow or joints.

“The major question is ‘What causes this?’ The answer may be a virus that’s not yet named or a virus that may cross-react with a known virus,” Loughran said. “This is a huge area of research.”

In May, Loughran co-authored a study with researchers from Finland and Cleveland that revealed a gene mutation is an underlying cause of LGL leukemia. In the study that appeared in the New England Journal of Medicine, the researchers found that 40 percent of patients with LGL leukemia had a mutation in the STAT3 gene that caused the gene to be constantly active. This finding will aid in diagnosis and with treatment if target drugs can be developed to inhibit the STAT3 gene, Loughran said.

Why the cells are constantly active and why they survive indefinitely are other questions that Loughran is attempting to answer through his LGL laboratory research program. Penn State Milton S. Hershey Medical Center is the site of the LGL leukemia registry, which contains blood samples and clinical information from about 800 patients with LGL leukemia.

“Patients come from all over the world to see me here — from Spain, England, Germany, Argentina,” Loughran said. “Many doctors aren’t aware of LGL leukemia and, honestly, commercial pathology labs don’t do a good, focused work-up necessary to pick it up.”

Loughran guesses that LGL leukemia is diagnosed in only 1,000 to 3,000 patients annually in the United States. Most of the patients he sees come to confirm suspected cases of it while others come with a definite diagnosis but want to know how to best manage the disease.

Meldrum knew he had LGL leukemia, but his doctor in Colorado suggested a visit to Loughran when frequent blood transfusions and the recommended treatment with immunosuppresants such as methotrexate failed to work.

Chemotherapy in large doses doesn’t work on LGL leukemia, but for Meldrum, Loughran prescribed a constant, low dose of Cytoxan, which is a chemotherapy drug, and it worked.

“I’ve had no blood transfusions since August of 2011 and I’ve been off the Cytoxan since February of this year,” Meldrum said. “I am feeling the best I’ve felt in three years.”

Though there is no cure for LGL leukemia, the goal is to keep it in remission.

“My feet tingle, which may be from the medications, and I have some muscular-skeletal pain, but I can certainly deal with that,” Meldrum said.
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replied August 20th, 2013
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Ironically, the same doctor (Loughran T) who was part of the study connecting LGL Leukemia with HTLV / HERV refuses to mention HTLV or HERV when interviewed about LGL Leukemia (i.e. cover up). And please notice the patient's remarks about tingling feet and pain - that's us!

Best wishes.
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replied August 19th, 2013
Experienced User
Anyone know how to stop ears ringing???
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replied August 19th, 2013
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WK,

Try the curcumin - I take 4 x 500mg with breakfast. It's not a cure, but it has helped alleviate my symptoms (it inhibits NF-kB used by HTLV). Ditto for Chinese Skullcap (it inhibits the reverse transcriptase of HTLV).

Best wishes.
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replied August 20th, 2013
Experienced User
Hello everyone how everybody doin hope all of u just fine.

I just got back my fullblood count result after 5years 4month possible exposure.

Everything look normal liver fuction, kidney, protein total, white blood count red blood count all normal. Negative Claymdia Negative HepA B C, Negative Siplis , Negative Goneria, Negative for HIV elisa test.

I only have problem with my colestrol is high, sugar also high last 5 years is not like that, and my urine have blood in it.

So what virus it would be im really confius here???

I cannot do cd4 count here n HTLV test 1 n 2 is not availabel n the dr refuis to do so. Anyone would plz to help me iam in MALAYSIA KUAL LUMPUR
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replied August 20th, 2013
Experienced User
September will be two (2) years since my exposure. My symptoms are almost gone but i know there is something within my system. I will start testing again next month just to clear my mind of second thoughts.

Hope you guys are doing ok.
Never give up hope.
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replied August 20th, 2013
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Ustas,

Thanks for the positive words, and same to you.

Best wishes.
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replied August 20th, 2013
Experienced User
Very good news for u man. Good to hear. Hope we all can start feeling better!

I won't be testing till December. Just got results back after 6 months. Hiv htlv blood count all normal. Seein an immunologist in December.

I might speak to Riley since he is close to me an work together and try and if ute something out..
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replied August 20th, 2013
Hi all ive been dealing with this for 10 years now, legs are getting weak and spine is painfull. Im glad to finally find probable cause. It all started with massive weightloss, chronic diareah , massive nightsweats, electric senastions going up the spine. Then it went into a new phase. Bladder became weak, balance effected, then my lungs got something inside xray showed white patches dr said it wasnt cancer so dont worry, i think its lung worms, feel parasite infested since then itching and movement since then. Then came burning sensation on my skin like thousand needles and neuropathy , my gums are reclining also, have also had some kind of lump in my right cheek for years. Anyway have lots of more symptoms in a hurry now so ill end it there.

Have been hiv tested went to a MS dr , numerous lyme tests and several normal doctors

Got to go now nice to find this place.


Btw i read something about new treatment called prosultiamine
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replied August 20th, 2013
Hi all ive been dealing with this for 10 years now, legs are getting weak and spine is painfull. Im glad to finally find probable cause. It all started with massive weightloss, chronic diareah , massive nightsweats, electric senastions going up the spine. Then it went into a new phase. Bladder became weak, balance effected, then my lungs got something inside xray showed white patches dr said it wasnt cancer so dont worry, i think its lung worms, feel parasite infested since then itching and movement since then. Then came burning sensation on my skin like thousand needles and neuropathy , my gums are reclining also, have also had some kind of lump in my right cheek for years. Anyway have lots of more symptoms in a hurry now so ill end it there.

Have been hiv tested went to a MS dr , numerous lyme tests and several normal doctors

Got to go now nice to find this place.


Btw i read something about new treatment called prosultiamine
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replied August 20th, 2013
Hi all ive been dealing with this for 10 years now, legs are getting weak and spine is painfull. Im glad to finally find probable cause. It all started with massive weightloss, chronic diareah , massive nightsweats, electric senastions going up the spine. Then it went into a new phase. Bladder became weak, balance effected, then my lungs got something inside xray showed white patches dr said it wasnt cancer so dont worry, i think its lung worms, feel parasite infested since then itching and movement since then. Then came burning sensation on my skin like thousand needles and neuropathy , my gums are reclining also, have also had some kind of lump in my right cheek for years. Anyway have lots of more symptoms in a hurry now so ill end it there.

Have been hiv tested went to a MS dr , numerous lyme tests and several normal doctors

Got to go now nice to find this place.


Btw i read something about new treatment called prosultiamine
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replied August 20th, 2013
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Dino,

We've been experiencing similar symptoms - the lung problems could be caused by Aveolitis, a lung condition caused by HTLV. Of course doctors wouldn't consider that since we're all crazy.

Best wishes.
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replied August 20th, 2013
Thanks for your reply, i have been thinking its S Sterocalis since its very related to htlv

Im going to try curcumin saw you wrote about ot earlier does it lower viral load or does it help with symptoms ?
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replied August 20th, 2013
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Dino,

Definitely none of us have S Sterocalis; it is only mentioned in medical literature because if HTLV suppresses your immune system it's harder to recover from S Sterocalis. But in all fairness, it's harder to recover from ANY illness once HTLV surpresses your immune system, including the common flu.

Curcumin inhibits NF-kB (nuclear factor kappa beta), which is part of the inflammation process, which HTLV uses to reproduce. Also it keeps my stools from going crazy, along with yogurt to fight the systemic Candida infections that HTLV causes. Chinese Skullcap is a reverse transcriptase inhibitor of HTLV, so I recommend that as well. You can look up all of the mechanics of NF-kb & reverse transcriptase inhibitors, it's documented on the internet.

Best wishes.
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replied August 20th, 2013
Ah ok maybe so, been alot in mexico tho and S Sterocalis is endemic there but you never know.

Thanks ill look up the chinese skullcap
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replied August 20th, 2013
I'm a male and had unprotected sex with a woman on july 31st wednesday. We had sex about 5 or 6 times unprotected. She told me 4 days after we had sex. I went to the doctor and they tested me. I was negative. They gave me some medicine called truvada norvir and reyataz.They told me to come back August 28.

The woman also told me she was undetectable and said her viral load is extremely low. I went with her to her doctor and her doctor did confirm that. What are the chances I have it? I am very scared to death right now. Haven't really slept much since this happened

I started the meds 4 days after we had unprotected sex. I am very anxious and haven't slept much since this happened
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replied August 20th, 2013
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Reezy,

You can't play with chances - you did what you did, you saw a doctor, you got medication. Keep your fingers crossed and let's hope for the best.

Best wishes.
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