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Certain HIV positive, but negative tests (Page 72)

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May 13th, 2013
Experienced User
Thanks for the reply msam...

Update.. I got my blood rest back. Htlv 1-2 not detected... Doctor said my white and red count was normal and says nothing is wrong and that if there was the blood count would be messed up...

I'm actually hungry and feel like eating now. I'm my sure of its stressful one me not eat but I dunno guys. Doc said I can go back in 2 months for another blood test. My tests haven't hanged in the last 4 months...

Doc also said my palms don't look too bad and shower me his which also looked similiar however I meee noticed my palms blotchy before


Any comments people?
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replied May 13th, 2013
Experienced User
Thanks for the reply msam...

Update.. I got my blood rest back. Htlv 1-2 not detected... Doctor said my white and red count was normal and says nothing is wrong and that if there was the blood count would be messed up...

I'm actually hungry and feel like eating now. I'm my sure of its stressful one me not eat but I dunno guys. Doc said I can go back in 2 months for another blood test. My tests haven't hanged in the last 4 months...

Doc also said my palms don't look too bad and shower me his which also looked similiar however I meee noticed my palms blotchy before


Any comments people?
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replied May 13th, 2013
Experienced User
I can't see the last post..
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replied May 13th, 2013
Experienced User
HTLV kit detects virus genome into the patient, and not antibody
Brazilians create more accurate and inexpensive test to detect HTLV
VENCESLAU Borlina SON
OF BLACK RIBEIRO

Researchers at the Blood Center of USP Ribeiro Preto (313 km from Sao Paulo) developed a molecular diagnostic kit more efficient and cheaper than the current test for HTLV virus, which can cause blood cancer and paralysis of the lower limbs.

Infrastructure is a barrier to adoption of HTLV testing, expert says the Emilio Ribas
The kit consists of reagents and instruments for clinical analysis confirms the existence of the virus and its type (if 1 or 2). According to the researchers, the test can cost up to 10% of the price of most currently used serological.

According to the researcher Mauricio Rocha, a new study has indeterminate results in up to 40% of cases. The new kit, he says, it is 100% effective. "The kit detects the virus genome into the patient, and not antibodies raised by him."

The origin of the research is the need to diagnose the virus to prevent further contamination. Studies estimate that, in Brazil, 2.5 million people are carriers of the virus, but in only 5% of these diseases manifest.

The main form of transmission is from mother to child by breastfeeding. But the test is not part of the protocol of prenatal care of pregnant women. The measure, according to experts, could prevent vertical transmission.

Other forms of contamination are unprotected sex, sharing needles and syringes and blood transfusions. Since 1993, blood banks, the tests for the virus are made.
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Users who thank adviseme for this post: TonyDewitt 

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replied May 13th, 2013
Extremely eHealthy
AdviseMe,

Although people have complimented me on my research, I have to say that you have always impressed me with the information you've posted, both here and on the HTLVhelp FaceBook page, both in terms of HTLV diagnostic testing & possible cures.

Everyone,

Clearly this is the test we should be taking, developed in Brazil where HTLV is a serious epidemic.

Best wishes.
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replied May 14th, 2013
Extremely eHealthy
I wrote them a letter about getting tested with their test - I will let you know if they reply.
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replied May 14th, 2013
Experienced User
We need this!
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replied May 13th, 2013
Experienced User
Hello all, - all my new tests were negative.

No htlv or anything else for that matter.

I appear to have bounced back from my relapse, I have had about 7 days of no severe issues which I am very thankful.

I am going to try a gastro dr next but at this point not sure how to react.

I think this was a entero, echo, misc type of virus that potentially triggered an auto immune reaction.

My questions now are is the virus gone? And we are dealing with post viral issues?
Is it still contagious? If this is a persistent or chronic illness, what other medicines should we take? 1 week I am very aggressive in finding an answer - and the next as my symptoms are smaller, I consider just forgetting the whole thing.
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replied May 13th, 2013
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WS,

Im glad that you are feeling better. I understand where you are coming from, some days when I feel better I start to think that I will get better and not die. But then eventually I get sick again, and realize that this is not going away, and it not getting better.

You're a valuable asset to me in fighting this disease, and I wish you well, but if this thing comes roaring back for you, I want you to contact me so we can pick up where we left off (i.e. trying to get treatment). Regarding "medicines we should take", there are none, except for the hope that antimetabolites such as Azacytidine and Methotrexate will cure us & save our lives.

I have 46 friends who are just forgetting the whole thing, so Im sure you know how I feel about that approach.

Best wishes.
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replied May 14th, 2013
Experienced User
I kind of think thats whats going on. Some type of crazy virus that has our immune systems going crazy. Hard to say if its still in us or not and its hard to figure out what medicine to take without identifying our issue. I am unable to take the forget the whole thing approach because my symptoms remind me constantly!
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replied May 15th, 2013
Extremely eHealthy
Goose,

I totally and absolutely agree with you - neither of us have the luxury of forgetting the whole thing. I have an appointment on Friday morning with a hematologist - I am going to bring the articles I mentioned previously:

1. The gang on TheBody site who died from NHL 10 year ago.

2. The HTLV patient cured in Greece by Azacytidine.

3. The effectiveness of Azacytidine against HIV.

4. The Methotrexate treatment of HIV.

I can count on one hand the number of people who agree with me that this is a retrovirus. Convincing a doctor is going to be even harder. But I have to keep trying, since as time goes by we are moving closer to becoming that group of DEAD people on TheBody site, moving closer to Alberto from Italy who developed Mycosis Fungoides (Leukemia) after 7 years (who only tested positive for HTLV by PCR, *not* by antibody).

How many people here are relying on the HTLV antibody test to determine if they have HTLV? Probably all of you. Yet Alberto is negative for HTLV antibodies but positive on the PCR test!

Next question - how many of you have had the HTLV PCR test? Probably none of you.

Maybe the hesitation of HTLV being a possibility carries with it the fear that doctors will do NOTHING for you, just like nothing is being done for people who are already diagnosed with HTLV.

Best wishes.
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replied May 13th, 2013
Extremely eHealthy
Someone mailed me a question:

Would you know the transmission risk from female to male? Only because this girl who I think gave me something has had other relationships and they don't have any symptoms. I know his since we work together.

Here's my response:

I don't know what to tell you about the transmission risk of the disease because SO LITTLE has been done to study it. If you read the HTLV European site, they say it takes years, but all of us here on this forum were infected with a SINGLE exposure, and we've infected other people with a SINGLE exposure.

This girl & her other sex partners don't seem sick to you, but YOU are sick, and frankly that's all that matters. Look at how many people with HIV don't look sick, don't feel sick, but have it. HTLV is not much different, some people are wiped out with it, while others are relatively healthy with it. I have a neighbor who has been HIV+ for 8 years, takes no medications, has a VERY healthy T-cell count, and a viral load of zero. Meanwhile, his boyfriend has full blown AIDS and probably will not live beyond this year. So you see, everyone has a different immune system for dealing with infections. I hate so sound like a doctor, but you need to focus on your health, not the health of people who may or may not seem fine.

Best wishes.
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replied May 13th, 2013
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Letter that I sent to a hematologist today (without links).
Dear Doctor,

HTLV is the disease I am concerned about; I will provide you the justification for my desire to be treated here in this note:

1. In TheBody web site, Doctor Ben Young replied to an open letter from a group of sex partners posted in 2004, stating that one by one they were dying from NHL and wasting, and suspected that a sexually transmitted virus was to blame. The doctor replied by stating that they should contact the CDC to identify this new type of virus. No one ever heard from them again, they are all presumed dead.

2. In Greece, Doctor John Meletis treated a patient who had become severely ill with HTLV via the antimetabolite Azacytidine, and after 8 months of standard dosing, the patient did not have detectable HTLV via PCR testing.

3. In Minnesota, Doctor Louis Mansky's group published a paper justifying the use of the antimetabolite Azacytidine against HIV, showing that in test tube studies it caused "lethal mutagenesis" for the HIV virus.

4. In Kenya, Doctor Simon Barasa claims to have cured two people of HIV using the antimetabolite Methotraxate.

I believe that I am infected with the same HTLV like virus that has killed the people in item #1 above, and I am seeking treatment for it via Azacytidine, Methotraxate, or some other drugs in the same class (antimetabolites). I know this sounds far fetched, but I am severely ill and want to be treated before my health worsens.

Thank you for your time.
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replied May 13th, 2013
Extremely eHealthy
Here is the open letter that I wrote (and sent) to a hematologist today - I provided links after each item that may or may not be allowed on this forum.

========================================== ========

Dear Doctor,

I am concerned about HTLV; I will provide you the justification for my desire to be treated here in this e-mail:

1. In TheBody web site, Doctor Ben Young replied to an open letter from a group of sex partners posted in 2004, stating that one by one they were dying from NHL and wasting, and suspected that a sexually transmitted virus was to blame. The doctor replied by stating that they should contact the CDC to identify this new type of virus. No one ever heard from them again, they are all presumed dead.

2. In Greece, Doctor John Meletis treated a patient who had become severely ill with HTLV via the antimetaboliteAzacytidine, and after 8 months of standard dosing, the patient did not have detectable HTLV via PCR testing (see article http://www.virologyj.com/content/9/1/1).

3. In Minnesota, Doctor Louis Mansky's group published a paper justifying the use of the antimetaboliteAzacytidine against HIV, showing that in test tube studies it caused "lethal mutagenesis" for the HIV virus (http://www.ncbi.nlm.nih.gov/pmc/articles/ PMC2772699/).

4. In Kenya, Doctor Simon Barasa claims to have cured two people of HIV using the antimetabolite Methotraxate (http://www.nation.co.ke/Features/DN2/Is-t his-it/-/957860/1843154/-/item/1/-/wr8ii7z /-/index.html).

I believe that I am infected with the same HTLV like virus that has killed the people in item #1 above, and I am seeking treatment for it via Azacytidine, Methotraxate, or some other drugs in the same class (antimetabolites). I know this sounds far fetched, but I am severely ill and want to be treated before my health worsens.

Thank you for your time.
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Users who thank TonyDewitt for this post: MyGooseFeelsCookedGuys 

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replied May 14th, 2013
Extremely eHealthy
The article referenced in item #1 about is:

TheBody dot Com slash Forums slash AIDS slash Meds slash Q159526.html
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replied May 13th, 2013
Experienced User
Everyone...in addition to HTLV, start researching the "Mood" virus....this fits also....this situation is a total surreal experience....
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replied May 14th, 2013
Extremely eHealthy
Surreal indeed.
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replied May 14th, 2013
Experienced User
The psychological effect of this is devastating.....
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replied May 14th, 2013
Extremely eHealthy
MGFCG,

Even if we were "lucky" enough to eventually get a HTLV diagnosis (with the new test from Brazil), all that means is that we would be ignored like every other person who already has a HTLV diagnosis. We have to change this for ourselves and for others suffering with this disease - this is totally unacceptable.

Best wishes.
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replied May 15th, 2013
Experienced User
I disagree man...if we know we have HTLV, then we can really put the pressure on someone to take the route of that guy in Greece and see what happens. F*ck it, I will go to Greece to fight this!!!!!!
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Users who thank MyGooseFeelsCookedGuys for this post: TonyDewitt 

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replied May 15th, 2013
Extremely eHealthy
MGFCG,

Yes, that's EXACTLY what I was hoping you'd say - that if you were diagnosed with HTLV, you just wouldn't be another one of the 25 million people infected who are sitting at home waiting to be crippled and dead, that you'd fight this thing. Instead of going to Greece, perhaps we should bring Doctor Barasa here - Im sure he'd administer the Methotrexate treatment that cured two people in Kenya.

Everyone else,

Take a minute, use your imagination, and decide what you would do if you were diagnosed with HTLV. Here's what I've done so far:

1. Created the HTLVhelp site.
2. Created the HTLVhelp Face Book page.
3. Corresponded with researchers and doctors and patients all over the world.
4. Posted on both this forum and the PhoenixRising forum - the people there have the same illness as we do (we can go there if this site ever shuts us down).
5. Seen two different hematologists (#2 this week) and an infectious disease specialist.

Best wishes.
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replied May 14th, 2013
Experienced User
Goose,

I've read about it as well, and I wonder if its a possibility since I've had this sore throat since the exposure 1 1/2 year now. I'm also wondering if maybe some of us are infected with multiple viruses and bacterial infections. I mean who knows what we caught from these women especially sex workers.
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replied May 15th, 2013
Experienced User
I know....my sore throat has been constant so far as well also....and my fatigue level is through the roof.....this really sucks badly!!!!
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replied May 16th, 2013
Extremely eHealthy
Same here, pretty hard to forget the whole thing between the pain and the fatigue.

Best wishes.
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replied May 14th, 2013
Experienced User
I feel like this is a bacterial infection in our digestive tract. That also affects other parts of our bodys. I swear my nose feels stuffy and my throat thing feels like thick mucus that won't go down. But when I take a Big or good solid poop. It feels like it clears up. Especially after I also blow my nose. Then I fee much "CLEARER" also everytime I eat sweats or sweet drinks. Please Try drinking "Coke" and "Redbul" and see the reaction. Me my throat gets dryer and my skin starts tingling. So that's a reaction of what I eat ir I take. Very confusing I know. But I really wanna test for bacterial infection s. Look into it guys. Plz safe my #612) 965-1371 plz only texts. And save just in case this site shuts down one day we can still keep in touch..
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replied May 14th, 2013
Extremely eHealthy
D-man,

Thanks for your number - you are entitled to your opinion, but this a retrovirus, a strain of HTLV. That explains all of the systemic malfunctions we are having, including candida infections in our digestive tract. Like HIV patients, we can keep treating the symptoms but we are not curing the cause.

Doctor Simon Barasa has posted his theory on the NIH site that HIV (and in turn HTLV) are primarily bone marrow diseases, which is where antimetabolites (Azacytidine, Methotrexate, etc) are active.

Wwww dot Ncbi dot Nlm dot Nih dot Gov slash Pmc slash Articles slash PMC3257974

Best wishes.
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replied May 15th, 2013
Experienced User
I think it could be a bacterial infection or a virus. Both of these could exhibit these types of symptoms.

Tony I hear what you are saying, but its hard to dismiss anything at this point because none of us have tested positive for anything. You would think at least one of us would test positive for something.

Whatever we have is a vicious condition and I hope we can at least get some type of diagnosis.
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replied May 15th, 2013
Extremely eHealthy
Again, I will ask the question: how many of you have had the PCR test for HTLV?
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replied May 15th, 2013
Experienced User
Did everyone perform Oral sex during this exposure?


Also is anybody else having trouble losing weight?
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replied May 15th, 2013
Experienced User
I have lost weight and have trouble eating. I feel bloated all the time which stomach pains
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replied May 15th, 2013
Experienced User
Not me. My exposure was fully protected. We didn't even kiss.

I'm gettin fatter because i'm eating and can't work out....
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replied May 15th, 2013
Experienced User
Fully protected.. Wow... I can't eat much at times and can't work out. I get really dizzy and confused just walking. I'm really struggling with work!
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replied May 15th, 2013
Extremely eHealthy
D-man,

First I became very bloated and heavy, now I am experiencing wasting. The virus interferes with the mitochondrial metabolism, causing the bloating, then later on all of your muscles being to waste away, causing the weight loss. No oral sex here, but the person I was with was a total pig, I didn't even enjoy it, and regret it every day of my life.

Best wishes.
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replied May 15th, 2013
Experienced User
Hi,

Does anyone of you have done a biopsy of the swollen lymphnodes?
I have a bunch of them (lymphnodes), varying in size, and the dr. do not want to do a biopsy.

This all makes me less confident in the dr. I have been seeing, since for example lymphoma could also be a possibility for me given all the symptoms, shapes of the lymphnodes and other features of the lymphnodes. The shape of my lymphnodes are exactly the shapes of lymphoma lymphnodes. Yet they do not even want to do a simple biopsy. My GP said that it could not be lymphoma based on the blood tests, but that is just BS since if it were that easy to detect no one would die from it anymore.

I think the reason of all of this is because the first appointment I had with my GP, I was acting really depressed, scared, anxious, etc.

Therefore my advice to the new people on this forum is:
Do not tell the doctor about any emotional feeling you may have. They will overrate it and will only do some minor tests, then to blame it on your anxiety/depression/etc. This is exactly what has been happening to people suffering from lyme disease for the last decades.
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replied May 16th, 2013
Extremely eHealthy
M,

Great advice, thanks! You're right, once a doctor knows that you are upset about being infected with a virus that can crippled and kill you, that's used against you. I have a hematology appointment tomorrow, and if I don't play it cool, the same thing will happen to me, and they will have me in a straight jacket by tomorrow afternoon.

Best wishes.
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replied May 15th, 2013
Experienced User
D-Man,

Yes I performed oral on this woman, and reading alot of your posts we share alot of the same symptoms.

Msamsamsa,

I hear you man I feel the EXACT same way, I went to my Dr. The same way full of anxiety, scared and depressed as well. They do a few tests and they came back negative now all they want to do is throw anxiety in your face and send you to a psychiatrist. I think it's time to find a new dr. and start all over.
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replied May 15th, 2013
Experienced User
My doctor told me that the last time I was there. I'm going to a more friendly one very soon. I'm just praying to God everyday.
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replied May 15th, 2013
Extremely eHealthy
MGFCG,

We are all being told that we are crazy, and we are all being told HTLV isn't a real disease, and we are all praying. We just have to find one doctor (gay, or third world, or crazy) who will believe us and give us medication for this crap.

Best wishes.
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replied May 15th, 2013
Experienced User
I also performed oral on the girl.

My throat an nose is constantly blocked up. It's been like this for a couple of months. The twitching in my muscles seems to be getting worst and joints r sore. The girl has no symptoms at all!!

Has anyone else on here been with other girls and infected them besides tony?
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replied May 15th, 2013
Experienced User
The girl I was with says she had no symptoms at all either. I haven't had sex with anyone since her because I'm way to scared to put someone in this sh*t with me.

My muscles still twitches and joints still sore.
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replied May 17th, 2013
Experienced User
I share your symptoms! I just don't undersatnd it.. I am now at like 1 year and a couple months being sick. At the 9th month point I go to the gym like 4 times a week. Only upper body workouts. Becuase now my hip joints and legs hurt if I try to run or eleptical. My bones click allot. Nose is stuffy and throat. Stomach pains and random warm and cold feelings in random body parts..
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replied May 15th, 2013
Experienced User
Hi,

Same here.

I also preformed oral
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replied May 16th, 2013
Experienced User
Hey guys, got a referal for a rheumatologist. My dr mentioned it could be vasculitis.

http://www.medicalnewstoday.com/articles/1 89281.php.

What u guys think ?
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replied May 16th, 2013
Experienced User
I have been referred to a rheumatologist. Sr suggested it na be vasculitis..

What u guys think?
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replied May 16th, 2013
Extremely eHealthy
If you're going to a rheumatologist, ask to be treated with the rheumatology drug XelJanz (Tofacitinib), which is shown to be effective against HTLV.

Best wishes.
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replied May 16th, 2013
Experienced User
I've seen that mentioned a few times. What will it do exactly and what if it doesn't work? That's if he will even give me it..
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replied May 16th, 2013
Extremely eHealthy
It's a new drug for arthritis that just happens to interfere with the same (kinase) enzymes related to inflammation that HTLV uses to reproduce (and cause arthritis). What if is doesn't work is a question EVERY arthritis patient asks, since not every drug works for everyone (probably because some arthritis patients unknowingly have HTLV). You'll be happy to taking ANYTHING that works against HTLV.

Best wishes.
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replied May 16th, 2013
Extremely eHealthy
Recent article summarizing HIV cures
Here's a copy of a recent article on TheBody site discussing the HIV cures, mostly involving bone marrow transplants (which again underscores Doctor Barasa's claim that retroviral infections are bone marrow based). Any treatments / cures that involve the bone marrow (e.g. transplants or antimetabolites such Azacytidine or Methotrexate) are important to us since we need to get a retrovirus out of our bodies.

Here's the article, enjoy:

One of the best parts of my job is covering HIV cure stories. They offer hope and they serve as amazing examples of human tenacity and the wonders of modern medicine. First there was the case of Timothy Brown, the so-called "Berlin Patient," who underwent a stem cell transplant using donor cells that were resistant to HIV. After almost three decades of the epidemic, his case proved that HIV could be cured.

Then, last year, there was the less reported case of two patients who received stem cell transplants similar to the one Brown received. The donor cells they received were not resistant to HIV, but because the men were on HIV treatment throughout the process, those donor cells were not infected. While both men were still on HIV meds, they showed no traces of HIV in their blood.

Next, at CROI 2013 in Atlanta, we learned about the baby from Mississippi who had been cured after very early treatment. I was present at the press conference where Deborah Persaud, M.D., and four other researchers were providing a preview of their respective study presentations. One would hardly know there were other studies, because all the questions were directed at Persaud about the cured baby. While the media coverage may have been a little overboard, it did put HIV in the national spotlight and gave people hope.

Shortly after, there were more results from the VISCONTI study, which followed 14 patients who had started treatment during acute infection. The patients continued treatment for at least a year before stopping. Surprisingly, they were able to control the virus and have undetectable viral loads without meds. While technically they are still HIV positive, they are "functionally cured," because their HIV reservoirs are much smaller and they don't need to take meds.


Then, last month, came the news about a 12-year-old boy who received a stem cell transplant using HIV-resistant donor cells to treat his HIV and leukemia. Sound familiar? It should, because it's the same procedure Timothy Brown underwent, though with one key difference. Instead of using bone marrow, the doctors used umbilical cord blood, which is easier to match. The procedure went well and we're waiting to see if the boy is cured.

Finally, last week, there were news reports about a Danish study testing panobinostat, an HDAC inhibitor, in 15 patients in an attempt to flush HIV out of latently infected CD4 cells that act as viral reservoirs. The researchers said they would have preliminary results within months, adding that the early signs were promising. However, the original news report of the study misinterpreted this as a promise of a cure within months, and the rest of the media ran with it.

David Evans of Project Inform wrote a great piece that demystifies all the media hype, where he explained:
Last week the London Daily Telegraph ran a story on this new compound, but claimed that a cure was just around the corner. The reporter apparently misquoted the researcher and overly hyped what he'd been told. The reporter has since toned down his piece and changed the headline due to pressure from a prominent activist in England and likely due in part to a piece the researchers themselves felt compelled to post to refute the article's claims. Unfortunately, the press outside of London grabbed hold and has been retreading the original uncorrected story since then.

Overall, the method of using HDAC inhibitors to awaken HIV reservoirs is still being studied in early stages of clinical trials. Even if they work, they need to be coupled with other strategies to then eradicate or at least reduce the reservoirs. On the other hand, stem cell transplants and very early treatment aren't practical or applicable for everybody, but these cases are the stepping stones that lead to medical advances that could be practical cures. I look forward to the day when a "functional cure" is old news. Until then, keep the HIV cure research coming.
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Users who thank TonyDewitt for this post: Definatelyworried 

replied May 16th, 2013
Experienced User
Hey guys,

Does anyone get very itchy prickly palms of their hands when taking a shower or after they get out of the shower?
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replied May 16th, 2013
Experienced User
Scared..

Not that I have noticed. Are ur palms red and blotchy that comes and goes?
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replied May 16th, 2013
Extremely eHealthy
Scared / WK,

Same here.

Best wishes.
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replied May 16th, 2013
Experienced User
Hey Tony
you mentioned someone from Italy that took him 3 years to test positive, his family is also experiencing symptoms maybe even mycosis fungoides, what did you say his name was?
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replied May 16th, 2013
Extremely eHealthy
Alberto...he, his wife, and his daughter are all experiencing back & leg problems, took him 2 year to test positive for HTLV (ONLY by PCR, not antibody) and after 7 years of being infected he developed Mycosis Fungiodes (caused by HTLV), which is why I will ask again - WHO HAS BEEN TESTED FOR HTLV VIA THE PCR TEST?

I have two lesions (one on my nose, one on my arm) that are not going away, Im afraid that I have Mycosis Fungiodes too.

Best wishes.
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replied May 17th, 2013
Experienced User
Haven't done the pcr test. I told my dr about it and she wrote it down but the lab doesn't do it. What's the pcr test involve?
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replied May 18th, 2013
Extremely eHealthy
It's just another type of blood test.
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replied May 17th, 2013
Experienced User
They have not allowed me to do a htlv test. Made new appointment with other dr.

I have two lessions, on my neck.
They look like this:
http://www.dermis.net/bilder/CD193/550px/i mg0031.jpg

Skin is very dry, whiter than other skin, looks like a patch, 5cm in heigh, 2.5 in width, oval shaped, ovalshaped, skin where the hair comes out is so dry that i falls off and is white,
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