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Certain HIV positive, but negative tests (Page 111)

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September 20th, 2014
Experienced User
I'm starting to get slightly trembling legs… I'm pretty sure this is a predictor of fast-progressive HAM. By the way, this is the first 'visible' symptom I have, so maybe at the next visit the neurologist will be able to diagnose something.

I hope I can stop this neurological disappointing thing. If leukemia comes, it'll be fine. I don't care, many people get cancer. But I wanna keep my walking ability, if possible. This is the only thing I ask for.
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replied September 20th, 2014
Experienced User
well ok, you got tested for all the major things. Try to get tested for Chlamydia and Mycoplasma genitalium, my friend.

All the best.
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replied September 20th, 2014
Experienced User
Hello all - TD

I am 2 weeks away from my "anniversary" -

I am maintaining 85 to 90% normal. I do not want to accept the situation but all my docs - dismiss my issues.

Now basically it is dull eye and testicle pain - slow healing from mosquito bites and bruising. Some headaches but ibuprofen usually takes care of that. Also some minor rectal bleeding.
Also - I am not as active as I once was but I am functional

For me this issue seems to cycle in and out ... Some days are better than others ... Just moving forward to more good than bad.

I put my head in the sand when I feeling good and stress out when the symptoms return or worsen. This last week has been a bad week.

Although for me - i have improved dramatically from loss of appetite for 3 months , laying in bed for weeks, chest pains, bowl issues, lymphnode issues, neuropathy, bleeding gums

Where I am at now seems like a walk in the park.

Multiple hiv tests - 2 past the year mark and 1 pcr
Complete battery of std tests
All rheumatologist tests
Cancer tests
Urologist tests and ct scan
3 ID doctors
1 immunologist
4 internist/ primary drs


Thanks for the GVN post - I am going to do some research on these dr sand see if I can get into chat with one.
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Users who thank wyomingscared for this post: TonyDewitt 

replied September 20th, 2014
Experienced User
good to hear you are getting better my friend! wish you the best and good luck for all of us,
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replied September 21st, 2014
Experienced User
hi wyoming,

glad you're feeling a bit better. Please hang in there.

Thanks for your support. Please let us know if you successfully get in touch with a GVN doctor.

Thank you, take care,

J
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replied September 21st, 2014
Experienced User
I wrote an email to Vincenzo Ciminale, one of the members of the task force. He's an oncologist of the University of Padua. Padua is pretty close to my place, so maybe I'll be able to meet him in person. His research activity has always been focused on Htlv , so he knows the topic very well.
So Basically I asked him if there's any chance of seeing any Htlv antiretroviral drug within the next few years.
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replied September 24th, 2014
Experienced User
Hi jammy, how are you? Tom.. any news??
I just developed a red area around my neck feels like sun burn. rash on shoulders! i tested again Elisa hiv1/2 3rd generation negative now it is 10months+3 weeks after the exposure!
I also had a CBC lymphocytes in normal range 33% but paletlets went down last month were 220,000 this month 206,000 have any one checked his paletlets?
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replied September 25th, 2014
Experienced User
hi friend,

gonna get checked by the neurologist today. will keep u guys posted.
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replied September 30th, 2014
Experienced User
No reply from Dr. Ciminale yet. What a joke these Doctors are.
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replied September 25th, 2014
Experienced User
hi guys,

time for an update.
I went to the neurologist at the University of Padua Hospital. The neurologist who visited me was great. She listened to all of my 'story', my symptoms, etc. She visited me with great accuracy. I asked her about the HTLV possibility. She has some patients with HTLV (!!!), so she didn't deny the topic at all. But she told me that HTLV would have probably caused lesions, which I don't have. Anyways, she told me this is very probably an immune reaction to an infection (thank God!), and prescribed some meds to keep the immune system stronger and normalize the immune response.

I don't have any Babinski sign, and the neurological check was normal. I told her about my leg pain and everything. By the way, I was told to keep checking the infectious part. Other than that, i have autoimmune thyroid, so will have to check even this more deeply. This was probably messed up even more, after the infection.

I still think HTLV is a possibility, but maybe someone will be able to help me out. Hopefully.
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replied September 29th, 2014
Extremely eHealthy
Look at the conversation the doctor had with you - total denial that HTLV is a possibility. By the time you get "lesions", you will be diagnosed with Mycosis Fungiodes, which itself is a cancer. And your thyroid problem, a girl that I infected has the same problem. If you look up the correlation of HTLV to thyroid problems, you will be surprised that HTLV does affect the thyroid.

Best wishes.
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Users who thank TonyDewitt for this post: jammy88 

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replied September 30th, 2014
Experienced User
Hi TD,

I know that HTLV messes it all up. Sad
I don't know, I'm trying to get better, but I perfectly know this thing won't disappear by itself. I'm trying it all and I'm determined to get prescribed some medications to feel ok. I got told about Chronic Fatigue Syndrome, which I know I have now. So, yeah, doctors told me this is an infection, they recognized it . But they're unable to say what it is… and I'm pretty sure it's Htlv, I know that. What can we do, other than going to the doctors and ask for help ? Should we all commit suicide ? I don't know…Sad
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replied September 26th, 2014
Experienced User
oh by the way I already tested for Htlv PCR (4.5 months post exposure), it was negative. I know I will have to test again if my symptoms don't disappear.

Next step will be trying those meds to regulate the immune response and I hope to feel better. Then, will have to check further into my immune system I guess…

keep fighting everyone.

ciao
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replied September 26th, 2014
Experienced User
also, I was told to keep assuming vitamins, especially vitamin B is great for the CNS.
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replied September 29th, 2014
Extremely eHealthy
Yes, vitamins B, D, and E are great for the CNS, and also keep in mind that anti-HTLV substances such as Prosultiamine are derivatives of Vitamin B.

Best wishes.
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replied September 28th, 2014
Experienced User
hi guys,

happy Sunday everybody.

So I wanted to share this with the all of you. I got prescribed a medication called 'Normast', which is a mastocytes regulators. My legs have shown some improvements since I started taking it. Of course I haven't solved all of my issues, but you might trying taking something similar (I got prescribed a 2-weeks dosage).

Please keep fighting, one day everything will get better.
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replied September 28th, 2014
Experienced User
very good news to hear ! good luck friend..
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replied September 30th, 2014
Experienced User
another case like ours reported on thebody dot com site

here i copy and paste
Please, for heavens sake answer my question this time?
Sep 24, 2014

2014 has been an absolute nightmare. I had sex with a sex worker from West Africa. She placed a condom on me, but I had a cut or some kind of wound or abrasion near the base of my shaft that I had from her giving me oral which was protected as well. The sex lasted no more than 10 minutes. I know the condom didn't cover the wound entirely and I know it was exposed to her vaginal fluids. 1 day after I caught a cold. Fast forward 1 week after I caught the cold and I began having cold chills, night sweating, an extremely dry mouth with a whitish coated tongue, my forearms turned sunburn red and burned, and I had nausea and loss of appetite for a couple of days. My symptoms never went away, they just progressed. Now I have fasciculations, numbness in both my forearms and my feet, sometimes burning in my feet and forearms, spastic colon, extremely sleepy and fatigued, and my lymph nodes have been enlarged in my neck, armpits, and groin for 7 months (doctors have confirmed my lymph node enlargement.) Symptoms have never once gone away. I have tested 14 times since 2 weeks until 6 months... i have tested for many other things as well. I am so confused? What is happening? My internal medicine doctor said he thinks this is post viral related. But feels like we have ruled out all the "life threatening" illnesses. I don't know if I can agree with him!!

1) Do I continue to pursue HIV? I mean seriously?! 2) Is there any other plausible step I take besides seeing a therapist! Because this is not anxiety, well, I have anxiety now because of my symptoms! Thank you for answering my questions.
Response from Dr. Wohl

Testing has ruled out HIV, it seems. Standard testing looks for HIV-1 and HIV-2. Your lymph nodes, if truly enlarged, should be biopsied (a big chunk). DW
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Users who thank EMIG for this post: jammy88  jammy88 

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replied September 30th, 2014
Experienced User
thank you, EMIG.

For sure this is the new epidemic. A highly contagious new virus, which nobody is able to diagnose and which causes life threatening diseases as time goes by.

This guy has all of our symptoms. This thing is very scary. A biopsy is a not a bad idea. But I would perform a bone marrow one, instead of looking at lymph nodes. I don't know.

We are all in the same boat. Which is not a good one.
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replied September 30th, 2014
Experienced User
this is xmrv for sure, 99%. there was a patient that had the same in Australia, was given a medic for that, i have read this in a forum before, they say xmrv is in mouse!! but cats eat mice! and xmrv is spread by saliva, that is why even people are sex protected, they still catch it...
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replied September 30th, 2014
Experienced User
XMRV and HTLV share many symptoms indeed.
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replied September 30th, 2014
Experienced User
it is so itchy feeling and like sunburn over shoulders, OMG
what is this....
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replied October 1st, 2014
Experienced User
I have this itchy feeling! i am negative to HIV1/2 antibody test till 11 months of exposure!.. my wife developed a rash under her neck few red spots folliculitis.. what is this....maybe it is a new hiv?? please help!
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replied October 1st, 2014
Experienced User
First case of Ebola in the US:

http://edition.cnn.com/2014/10/01/health/e bola-us/index.html?hpt=hp_t3


If Ebola can fly from Africa to the US, so can any other disease.
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replied October 1st, 2014
Experienced User
First case of Ebola in the US.


If Ebola can fly from Africa to the US, so can any other disease.
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Users who thank jammy88 for this post: EMIG 

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replied October 2nd, 2014
Experienced User
Looks like CoQ10 can really help reverse nerves damage. Please have a look:

www[dot]ncbi[dot]nlm[dot]nih[dot]gov[slash ]pubmed[slash]9266519


I think it can really help with numbness and this kind of symptoms.
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replied October 2nd, 2014
Experienced User
Hi all,

I havent been posting here for long.

I have been sick for 2 & half years. I basically had given up to find if this is caused by new / hidden virus, because a lot of the chinese patients has went through blodd drawn for some very high tech DNA search on all virus in several research institure, which there is no specific virus identified.

It is more towards some kind of multi-drug resisted bacteria colonization in the gut, and the metabolites of these bacteria is causing our symptoms, after the acute infection phase.
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replied October 3rd, 2014
Experienced User
Hi IsThereAnyHope,

why do you talk about bacteria ? Have you had any conversations with doctors about that?

Best wishes and keep fighting,

J
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replied October 3rd, 2014
Experienced User
just want to specify that I'm 100% sure that the cause of *my* issues is a (retro)virus. However, I'm not able to demonstrate it. Every test came up negative, so far. Best wishes.
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replied October 3rd, 2014
Experienced User
Oh god ! maybe you are right!
but does that bacteria causing all of us having rash, sweating, weakness, etc?
the thing is there is a virus is called hiv-like virus in China(XMRV). it causes the same symptoms we have,
if you have the ability to send your blood sample to south korea, they have a better technology..
and also after 8 months of infection i went to a hospital in Shenzhen, China, the doctor saw my hiv1/2 negative many times over 8 months, she said this is not hiv this is a fungal and bacterial infection.
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replied October 10th, 2014
Experienced User
hi friend, i got this in shanghai! i think you are right!!
i tested negative till 11 months hiv1/2 tests even CMIA antigen!
please know the name of this bacteria.. let us know, thanks alot for xie xie ni
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replied October 3rd, 2014
Experienced User
Very interesting article, guys. Please take a look. I guess we're getting to the point and something important is developing in addressing the Htlv problem. Looks like asymptomatic carriers and HAM/TSP sufferers might have VIRUSES WITH DIFFERENT GENOMES. This might also explain why many Htlv tests do not work properly (but I'm just guessing here).



HTLV-1 proviral integration sites differ between asymptomatic carriers and patients with HAM/TSP

www[dot]ncbi[dot]nlm[dot]nih[dot]gov[slash ]pubmed[slash]25270762?dopt=Abstract&u tm_source=dlvr.it&utm_medium=twitter

Abstract
BACKGROUND:
HTLV-1 causes proliferation of clonal populations of infected T cells in vivo, each clone defined by a unique proviral integration site in the host genome. The proviral load is strongly correlated with odds of the inflammatory disease HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). There is evidence that asymptomatic HTLV-1 carriers (ACs) have a more effective CD8 + T cell response, including a higher frequency of HLA class I alleles able to present peptides from a regulatory protein of HTLV-1, HBZ. We have previously shown that specific features of the host genome flanking the proviral integration site favour clone survival and spontaneous expression of the viral transactivator protein Tax in naturally infected PBMCs ex vivo. However, the previous studies were not designed or powered to detect differences in integration site characteristics between ACs and HAM/TSP patients. Here, we tested the hypothesis that the genomic environment of the provirus differs systematically between ACs and HAM/TSP patients, and between individuals with strong or weak HBZ presentation.
METHODS:
We used our recently described high-throughput protocol to map and quantify integration sites in 95 HAM/TSP patients and 68 ACs from Kagoshima, Japan, and 75 ACs from Kumamoto, Japan. Individuals with 2 or more HLA class I alleles predicted to bind HBZ peptides were classified 'strong' HBZ binders; the remainder were classified 'weak binders'.
RESULTS:
The abundance of HTLV-1-infected T cell clones in vivo was correlated with proviral integration in genes and areas with epigenetic marks associated with active regulatory elements. In clones of equivalent abundance, integration sites in genes and active regions were significantly more frequent in ACs than patients with HAM/TSP, irrespective of HBZ binding and PVL. Integration sites in genes were also more frequent in strong HBZ binders than weak HBZ binders.
CONCLUSION:
Clonal abundance is correlated with integration in a transcriptionally active genomic region, and these regions may promote cell proliferation. A clone that reaches a given abundance in vivo is more likely to be integrated in a transcriptionally active region in individuals with a more effective anti-HTLV-1 immune response, such those who can present HBZ peptides or those who remain asymptomatic.
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replied October 4th, 2014
Experienced User
Hi All,

Very bad news. Yesterday I was told that I'm not going to be hospitalized anymore. Looks like the Dr. that was following me kinda gave up, since has no idea of what's going and sees nothing serious at the moment.

I was told they might try with some other exams in 3 months, if I'm still not feeling ok.


FML.
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replied October 4th, 2014
Experienced User
dear friend are you in italy now??
ok

our relief is in that , i am going to start it in few days
and """"Don't listen to the Stupid FDA or online Stupid Reports saying any bad thing about ozone, if you do! then you will not be treated"""" ozone is the most safe way to treat viral and bacterial infections with inflammation and all other stupid things we are facing. and please don't go to a normal hospital saying! hay i want ozone to treat HTLV haha
they will laugh on you and deny it! because if doctors in normal hospitals allow it then, they will never find sick people coming to ask for their help! and never to find people buy their poisons ...
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replied October 5th, 2014
Experienced User
have they tried HIV2? HIV O tests?
PCR RNA? Antibodies?
what tests and lab work did you have?
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replied October 6th, 2014
Extremely eHealthy
Remember that HTLV is part of native populations in Australia, Japan, North & South America, and Africa. People who settled those areas risk being infected.
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replied October 6th, 2014
Experienced User
yes,, ok i will check for htlv when i have money, thanks friend.
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replied October 7th, 2014
Experienced User
Hate this disease. Feeling so tired and sick. Abandoned by Doctors. I have no words to describe how I feel.
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replied October 7th, 2014
Experienced User
please my friend, now i am on my 11'th month. the tiredness feeling is getting better, not so tired like before, but other places in my body are changing! like day allergy, neck allergy! lymphnode under jaw getting bigger! and tested negative for hiv1/2 at 11 month Elisa test!!
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replied October 7th, 2014
Experienced User
It's been 7 months from my exposure. I feel so sick and tired. No way I can live this way. Gotta find a solution to this disease.
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replied October 7th, 2014
Experienced User
my friend from indonesia had the same my friend
he started Ozone treatment and the first time! he could walk and almost his body has no pain .. now it is his 4th time and he is back to work no tiredness at all now
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replied October 13th, 2014
Experienced User
Guys, I don't know if we can trust DRACO. However, they're trying to make it effective against retroviruses, too. They're gonna be able to accept donations very soon.


Personally, I'll donate something. If we wanna keep having some hope, I would suggest you to do the same - when the time comes.

Many thanks and best wishes.


Quick update: the mast cells regulator I was given by the neurologist has had some mild effect. However, I'm gonna update her, since I still have symptoms. Also, I'm planning on getting checked at the oncological / Chronic Fatigue Syndrome center in Aviano, Italy. By the way I'm feeling a bit better, with all of these supplements.

I got in touch with a guy on PhoenixRising forum. 2.5 yrs ago he was victims of a sexual abuse, and now suffers of all of our symptoms. Well, he said that there's hope. He's been able to manage the condition during these years. He gave me the hope, so I wanna give it to you, too.

You guys have a good day, God bless you all.
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replied October 14th, 2014
Experienced User
Quick update: my thyroid is ok. Always had slightly positive Anti - TPO, however TSG and Anti-TG are in range.
Ultrasound was ok showing no issues.

Let's go on…. have a good day.
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replied October 16th, 2014
Experienced User
The 'Ebola emergency' in the U.S. is not good news for us… This will take money, resources, and time from other potential virus researches. HTLV was suddenly considered a task force priority, then Ebola came and now there's only this virus everyone is talking about.

Those poor people in Africa started dying from Ebola in MArch, but nobody cared. It's amazing how things changed as soon as a nurse got infected in the U.S. … -_-
I hate this kind of discrimination, as African people were not important.

With HTLV, it is the same. Everybody thinks this is only in remote places. When the epidemic gets to the 'civilized' countries, someone will care about us… Maybe.

Best wishes everybody. I hope you're doing ok.
My legs are so weak…and I'm so scared. Damn disease.
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