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Certain HIV positive, but negative tests (Page 43)

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August 12th, 2012
Experienced User
I have double hairs growing on my body earlier where there was single hair, i think this is coz of high CD4 or CD8 cells. Also i had skin pealing on my palm, teeth marks on tongue. i feel radiation on my butt which is coz of spinal cord nerve inflamation which runs down to my legs and makes my legs feel weak.Yes forget to mention about my eyes, vision is very blurred and it hurts a lot feels something sharp is pricking on them.

Typical symptoms of HAM/TSP and HTLV Uvites....
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replied August 12th, 2012
Experienced User
Hi all
I have the same problems
Had a broken condom with a csw who tested negative for hiv antibodies and 2 or 3 weeks later had unprotected oral sex with a normal girl.

the weeks after I had
Diarhrea
Weird flashes
Headache
Tired
Swollen lymphnodes neck and groin 2cm
Weird rash
Some kind of wrats all over my body
Mouth wounds
Tongue hurt fast
A mild sore throat when inside but when I went outside it hurt
Fever feeling no temperature
Very weird dreams and thoughts
Feel week
Had a day were I couldnt walk straight because of bowel pains

Now 3 months after the last oral sex I still have
swollen lymphnodes
Tired
Weak
Infection in hair pockets on legs
Weird thoughts when trying to sleep like trying to think about me driving a elephant and than minutes later I am thinking about dishwasher for example. Ive no idea how I got to that thought afterwards
Lump in throat for 3 months now hard to swallow and dry throat
Feel my vision got worse
Lot of acid coming to my throat

I tested negative for all stds 5 weeks after oral sex and hiv duo came back negative
bloodwork came back normal 5 weeks after
hiv duo came back negative 6 weeks after
bloodwork came back normal 11 weeks after
hiv duo came back almost 12 weeks after


Ive no idea what is going on
Does anyone have this as well?
Dr dont believe me and blame it to anxiety
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replied August 12th, 2012
Experienced User
I dont have acute ebv infection toxoplasmosis or any of that according to blood
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replied August 12th, 2012
Experienced User
What should I do now people
I tried reading through the thread but only read 10 pages or so my internet is too slow
Please help me
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replied August 12th, 2012
Experienced User
Hi Nsamsamsa, welcome to this forum i exactly had all your symptoms but mine started 3 daays after protected exposure. I myslef and few other friends on this forum are stuck with HTLV infection though our test is repeated negative.
i am past 5 months, few of them are 8 moths some are 3 years...
My symptoms were same as yours, with regard to thought i still get them even at early morning or even during the days..

Diarhrea
Weird flashes
Headache
Tired
Swollen lymphnodes neck and groin 2cm
Weird rash
Some kind of wrats all over my body
Mouth wounds
Tongue hurt fast
A mild sore throat when inside but when I went outside it hurt
Fever feeling no temperature
Very weird dreams and thoughts
Feel week
Had a day were I couldnt walk straight because of bowel pains

Now 3 months after the last oral sex I still have
swollen lymphnodes
Tired
Weak
Infection in hair pockets on legs
Weird thoughts when trying to sleep like trying to think about me driving a elephant and than minutes later I am thinking about dishwasher for example. Ive no idea how I got to that thought afterwards
Lump in throat for 3 months now hard to swallow and dry throat
Feel my vision got worse
Lot of acid coming to my throat

Even more............
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Users who thank adviseme for this post: TonyDewitt 

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replied August 13th, 2012
Extremely eHealthy
MsamMsamSa,

AdviseMe said it all - we are all sick for quite a long time, and most of us suspect HTLV, but all have tested negative for it. Personally, I've tested for HTLV at 4.5, 7, and 8 months post exposure, and plan to test again every two months going forward. The good news is that none of us have HIV, since we've all tested exhaustively for it. However, since HTLV testing is not conclusive, we are in limbo. Even if we do eventually test positive for HTLV, there's no medication for it, so it's an unbelievably horrible situation to be in.

Best wishes.
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replied August 13th, 2012
Extremely eHealthy
The FDA is close to approving Tofacitinib for the treatment of Rheumatoid Arthritis (RA), but more importantly, the drug has been shown to be effective again BOTH disorders caused by HTLV, ATL and HAM (see article below). Therefore HTLV sufferers can tell their doctors "I have have arthritis" and receive actual treatment for their suffering!

A Role for Tofacitinib Within the Treatment of ATL and HAM/TSP:
The chemistry technology section at NCGC has aided the Waldmann lab (NCI) in using a Jak3 inhibitor for the potential treatment of ATL and HAM/TSP. The retrovirus, human T cell lymphotrophic virus-1 (HTLV-I) is the etiologic agent of adult T cell leukemia (ATL) and the neurological disorder, HTLV-I-associated myelopathy/tropical spastic paraparesis (HAM/TSP). The HTLV-I encoded protein tax constitutively activates IL-2, IL-9 and IL-15 autocrine/paracrine systems, that in turn, activate the Jak3/STAT5 pathway, suggesting a therapeutic strategy that involves targeting Jak3.
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replied August 15th, 2012
Experienced User
Tony, Has There been any clinical Trial on Tofacitinib for HTLV HAM/TSP?
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replied August 15th, 2012
Extremely eHealthy
No, only a medical research article stating that it was tested in test tubes & rats to show reduction of HAM & ATL through its JAK inhibition ability; other JAK inhibitors include AG490. If / when Tofacitinib is approved for arthritis, HTLV sufferers should be able to request the drug from their doctors.
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replied August 15th, 2012
Extremely eHealthy
These JAK inhibitors such as Tofacitinib and AG490 are not only going to revolutionize arthritis treatment, but also will be for the first time in history a direct treatment for HTLV; JAK inhibitors stop the proliferation of HTLV infected cells. I don't want to be overoptimistic to say that they're a cure for HTLV, but I would love for my terrible symptoms to go away.

Best wishes
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replied August 15th, 2012
Experienced User
Hello everyone, sorry everyone is still going through this misery of not knowing what's going on. I still have the lump feeling in the throat, upper stomach pains, nausea feeling that comes and goes, teeth marks on side of tongue, stools aren't the same anymore. I'm currently seeing 2 different GI drs. I've had upper scope done, colonoscopy which he said looked good he did take some biopsys and I should know the results in a few more days. I'm going for another endoscopy on friday from my other dr. Ive been doing a lot of research and my symptoms match up with chronic pancreatitis, or celiac disease. I'm praying it's not pancreatic cancer. I forgot to mention I've also had 3 ct scans with contrast and 1 without contrast done. 1 showed I have colitis and I'm currently taking flagyl for it. Also I tested positive for h. pylori and just finished 2 weeks of antibiotics for it. I haven't been retested yet to see if the medication worked or not. This upper stomach pain is really worrying me though. All 4 ct scans 3 with contrast say pancreas appears normal but for some reason I just don't believe the tests. They say ct scans are pretty accurate for seeing pancreatic cancer and also showing where or if it has spread or not. What do you guys think should I still be worried about cancer after 4 ct scans? I'm really worried here guys. Only other thing I can think of is celiac disease. I'll keep you guys posted on all my results I know I haven't been posting much I've just been going through major depression and even suicidal thoughts, my life just isn't the same anymore. I know something's not right with my body and like most of you dr. thinks its anxiety I get so angry cause I feel like they don't even care. I wish everyone the best and he you all feel better soon.

Ustas, look up celiac disease your symptoms sound a lot like mine. Good luck friend
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replied August 15th, 2012
Extremely eHealthy
Scared49,

I hear you on your symptoms - we are all suffering. Tell your doctor that you want to get on the clinical trial for Tofacitinib - if that doesn't make you feel better immediately (within a few days), then I will mail you 20 dollars of my own money - that's how strongly I feel about the anti-inflammatory properties of Tofacitinib. Yes, you'll have to lie and say that you have arthritis, but that's a small price to pay.

Best wishes.
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replied August 15th, 2012
Extremely eHealthy
PS: Here's the wiki entry for Tofacitinib:

Tofacitinib (formerly tasocitinib, CP-690550) is a drug being investigated by Pfizer for the treatment of rheumatoid arthritis (RA), psoriasis, inflammatory bowel disease, and other immunological diseases, as well as for the prevention of organ transplant rejection.
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replied August 17th, 2012
Experienced User
i want to go in and test for HEP, A,B,C AND HIV 1,2 AND SYPHILLIS, again! something is not right...

PLEASE PEOPLE SEARCH: MYCOPLASMA INFECTION.... AND ALSO MENINGITIS!

internet will not load up this forum all the time.. so frustarting
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replied August 17th, 2012
Experienced User
im on 6 months and 2 weeks +
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This post has been removed because it did not meet our Community Guidelines.

replied August 17th, 2012
OK....

Time for a reality check here....

The above article by Mr. Sadowsky is misleading.....

I spoke with a very respected Harley Street Doctor about this, so allow me to clarify....

In the above article, Mr. Sadowsky says that, yes, in some people, ACCORDING TO ONE STUDY, it can take years to develop antibodies...

However, the study Mr. Sadowsky is referring to, is OUT OF DATE. The modern HTLV 1 and 2 tests WILL detect HTLV antibodies within 3 months. Your comments that some people NEVER develop antibodies is nothing short of scare-mongering.

Hopefully this will put to bed any nonsense that it takes years to create antibodies - actually Mr. Sadowsky didn't say that - he just pointed out an out of date study which claims this. And he DID NOT say that some people NEVER produce anti-bodies in your post above- this appears to be mis-information on your part. If you can show me a link where Mr. Sadowsky emphatically states that some people NEVER develop antibodies at all, then I stand corrected...

Hope this helps....
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replied August 17th, 2012
Extremely eHealthy
D-Man,

I appreciate your desire to keep testing, but please include HTLV in your testing. While doctors know everything about HIV, HEP, and Syph window periods, they know nothing about HTLV window periods.

Best wishes.
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replied August 17th, 2012
Extremely eHealthy
I just saw on the MedHelp forum that someone named JoeyK11 wrote in asking the doctors about HTLV, and quoted the same article by Sadowsky on TheBody site that says that HTLV antibodies could take years to develop. The MedHelp doctor wrote back that the Sadowsky article is "out of date" and that current HTLV tests are conclusive at 3 months. I replied to the article thanking both of them for discussing HTLV, I hope that doesn't get me thrown off of there for the THIRD TIME.

Best wishes.
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replied August 20th, 2012
Experienced User
Andyl1 thanks for your post, lets agree with u on 3 conclusive htlv modern day test. But how is that possible for all of us to have htlv symptoms and test negative for antibody. Every one is tested past window period 4,6,8 months. A lady on htlv Facebook, who was tested repeated positive in the past before developing htlv limphoma, now her recent 2htlv antibody tests are negative.
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Users who thank adviseme for this post: TonyDewitt 

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replied August 20th, 2012
Extremely eHealthy
Andy,

Richard Engath tested negative at 4 months, and then tested positive later (AdviseMe, thanks for the reference on Mr. Engath). Look up "HTLV negative with symptoms", and you'll see studies are dealing with people who do NOT develop HTLV antibodies, yet are HTLV infected. The best explanation for this is that the immune response wipes out most of the initial HTLV infection, leaving only a small amount of HTLV. The author left off by saying that REPEATED testing by PCR is necessary to detect HTLV.

And let's be honest, I saw Dr. Jose's response on MedHelp, he didn't even want you to get tested because it's "so rare" to have HTLV - you should consider that the first sign that he's in denial about HTLV. Does anyone think that 35 million people infected is rare? Does anyone really know what the HTLV antibody window is? No, doctors who NEVER deal with HTLV are claiming to have expertise in HTLV, and that's just wrong. The few doctors who are experts in HTLV are either working in third world countries or in research labs.

AdviseMe's statement is valid, we have tested past 4,6,8 months, and I personally am going to test every two months going forward (i.e. 10, 12, 14 etc.). If that test eventually becomes positive, then I will be living proof that that people can have HTLV past SIX MONTHS and still test negative. And when that happens, I want you to get a REFUND from Dr. Jose for telling you something he knew nothing about.

As soon as the FDA approves Tofacitinib, I am going to find an arthritis doctor who will prescribe it to me, since it is a JAK inhibitor, it will interrupt the life cycle of HTLV - that's our best hope for survival at this point.

Best wishes.
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replied August 20th, 2012
Extremely eHealthy
Here's an excerpt from last year's issue of Blood, titled "JAK Blockade and HTLV", describing the effectiveness of JAK inhibition (Tofacitinib / CP690550) not only HTLV infection, but also on rheumatoid arthritis, psoriasis, and prevention of renal transplant
rejection:

Alternatively, paracrine stimulation of IL-9 by HTLV-1 Tax could also promote activation of the IL-9 receptor on monocytes, which in turn stimulates proliferation of HTLV-1infected lymphocytes.6 The current article by Ju and colleagues demonstrates that inhibition of all
3 receptor-mediated pathways prevents proliferation
of HTLV-1infected lymphocytes more effectively than inhibition of any one of the pathways.1 Moreover, because the IL-2, IL-9, and IL-15 receptors all share the use of the common chain (c), inhibition of associated Jak3 proved to be as effective as combined inhibition of all 3 pathways. CP690 550 is a selective Jak3 inhibitor, plus it also inhibits mutant forms of Jak2. Clinical studies are under way in patients with rheumatoid arthritis and psoriasis; other studies will also examine the prevention of renal transplant
rejection. The Jak-Stat pathway may also be constitutively activated in transformed cells due to
gain-of-function mutations. Although Jak2 mutations are common in myeloproliferative disorders, Jak3 mutations have been reported in only a few patients with solid tumors, and have not been identified in ATLL.2,7 Alternatively, the Jak-Stat pathway may be activated
by loss of suppressor of cytokine signaling (SOCS) proteins, E3 ubiquitin ligases that promote the degradation of Jak proteins. HTLV-1 infection overcomes the effects of interferon-induced Jak-Stat activation by
up-regulation of SOCS1. In light of the limited efficacy of current therapies for ATLL and HAM/TSP, the current preclinical results with Jak3targeted
therapy offer a potential new avenue of treatment
for these disorders.
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replied August 20th, 2012
Extremely eHealthy
HTLV awareness
HTLV awareness
May 14, 2012


Dear Dr. Wohl,

My post is part statement and part question, and since you have experience with prison populations, I figured that you'd be the best person to address this to please. HTLV, a retrovirus that was discovered a few years before HIV, seems to be quietly spreading in the same ways as HIV (unprotected sexual contact, blood contact). It occurs to me that many people who contact your forum are understandably concerned that they've contracted HIV, but eventually test negative, despite having retroviral syndrome symptoms - why aren't any of these people tested or at least counseled about HTLV, especially those in prison populations? I've come to realize that doctors the USA don't even include HTLV as part of routine STD testing, and certainly no public health campaign exists to raise awareness of this virus - are we being complacent as Americans that HTLV cannot happen in our country? With half as many Americans infected with HTLV versus HIV (and some co-infected with both HTLV and HIV), shouldn't we be worried that this will become the next epidemic? Why aren't drug companies coming up with anti-viral treatments for HTLV to prevent a generation of people suffering with paralysis and dying of cancer (both can result from HTLV infection)? I apologize if my questions are emotional, but I already witnessed people I knew mowed down in the eighties because we weren't doing enough against HIV - should we be repeating the same mistake with HTLV? Thank you in advance for your logic and compassion.



Response from Dr. Wohl

Human T-cell lymphotropic virus (HTLV) is a genus of viruses that include four known viruses. None of these cause an AIDS-like illness. HTLV-I and HTLV-II have been found to cause a serious leukemia and a type of neurological disorder. HTLV-III and IV have been found in humans but have not been linked to any diseases.

There is no evidence to support a role for these viruses in an HIV-like syndrome and screening for these is not justified given the fact that disease is rare and there is no treatment. DW
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