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Certain HIV positive, but negative tests (Page 60)

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January 13th, 2013
Experienced User
current population
Hi All,This is the recent study from NCBI on HTLV Population which is a complete faliure. Their current estimate data is 5-10 mm people after analysing 1.5 bn population of endemic area.But the world current popu is 7.5 bn. What about the remaining 6bn people who still needs analysed forinfection. even if we take the least 5mm infectin every 1.5bn for remaining 6bn people yet to be analysed we have over all 35mm infections due to HTLV. This figure is still not correct coz majority of the population will not test positive with these incompetent HTLV serology tests which shows false negative and no defined window period.

The human T-cell leukemia virus type 1 (HTLV-1), identified as the first human oncogenic retrovirus 30years ago, is not an ubiquitous virus. HTLV-1 is present throughout the world, with clusters of high endemicity located often nearby areas where the virus is nearly absent. The main HTLV-1 highly endemic regions are the Southwestern part of Japan, sub-Saharan Africa and South America, the Caribbean area, and foci in Middle East and Australo-Melanesia. The origin of this puzzling geographical or rather ethnic repartition is probably linked to a founder effect in some groups with the persistence of a high viral transmission rate. Despite different socio-economic and cultural environments, the HTLV-1 prevalence increases gradually with age, especially among women in all highly endemic areas. The three modes of HTLV-1 transmission are mother to child, sexual transmission, and transmission with contaminated blood products. Twenty years ago, de Th and Bomford estimated the total number of HTLV-1 carriers to be 10-20 millions people. At that time, large regions had not been investigated, few population-based studies were available and the assays used for HTLV-1 serology were not enough specific. Despite the fact that there is still a lot of data lacking in large areas of the world and that most of the HTLV-1 studies concern only blood donors, pregnant women, or different selected patients or high-risk groups, we shall try based on the most recent data, to revisit the world distribution and the estimates of the number of HTLV-1 infected persons. Our best estimates range from 5-10 millions HTLV-1 infected individuals. However, these results were based on only approximately 1.5 billion of individuals originating from known HTLV-1 endemic areas with reliable available epidemiological data. Correct estimates in other highly populated regions, such as China, India, the Maghreb, and East Africa, is currently not possible, thus, the current number of HTLV-1 carriers is very probably much higher.
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Users who thank adviseme for this post: TonyDewitt 

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replied January 14th, 2013
Extremely eHealthy
WS,

I was just corresponding with the HTLV group, and they graciously gave me much information on HTLV (that I will attach below). I don't agree with much of it, because like the rest of us, I am suffering.

HLV,

Congrats on your negative HIV test - you don't need to worry about HIV anymore than God. We all tested way beyond the HIV window period and we all came back negative for HIV. I like what you wrote about peripheral neuropathy and nerve damage with enduring rashes, conjunctivitis and eye-swelling, oral ulcers and throat problems. However your mention of "low risk" doesn't sit well with me, since I was infected with a high risk, and so were many of the people on this forum also. Furthermore I infected others with "low risk" activity - one girl performed oral on me and the VERY NEXT DAY her eyes were sore red and her joints were visibly swollen. Also we're all getting hip joint pain, like Avascular Necrosis (AVN) in HIV sufferers.

AdviseMe,

Thanks for the article - I have no problem estimating the number of HTLV sufferers to be over 40 million, even more than are suffering with HIV, since HTLV has been around for 100,000 years, and since NO ONE routinely tests for it.

Everyone,

Here's an email exchange between myself and the HTLV center, they were very nice to me but gave the same information that we've all seen before regarding HTLV window periods being shorter than HIV and symptoms not showing up right away (both of which I disagree with).

Poupak,

Thank you for your very informative reply, I appreciate you taking the time to send all of this information to me. However, I would like to point out that HTLV is extremely difficult to detect, both because it exists in small quantities in the patient (and therefore elicits a weak or non-existent immune response), and occurs in defective or variant forms. Reading articles from South America, doctors are having difficulty detecting HTLV even in patients suffering from HAM and ATL; to address conclusive testing concerns, Brazil has implemented a triple test (antibody & western blot & PCR) for testing suspected HTLV infections, which supports the perspective that HTLV is becoming more difficult to test for, not easier as your documentation claims. Also, I would like to know if Tofacitinib (Xeljanz) has been considered for treating your HTLV patients, since it has been proven effective in vitro.

Thank you again for your time and consideration.


On 01/14/13, HTLV<HTLV at imperial dot nhs dot uk> wrote:


Greetings,





Many thanks for getting in touch with us with your query. Please note that the window period post exposure or HTLV is 3-4 months (12 to 17 weeks). It seems that you have tested negative out of the period. Also it is important to know that HTLV-associated diseases do not usually manifest for many years after acquiring the infection. It is therefore highly unlikely that the symptoms you are experiencing are related to the HTLV virus.



We are often asked about the window period for the diagnosis of HTLV infection and have prepared the following detailed reply which addresses your concerns in detail.



What is the window period after infection before antibody tests for HTLV infection are always positive?



1. The best published data are from Angela Manns and co-authors 1992 paper published in the journal ‘Blood’1. They repeatedly tested blood transfusion recipients who had been transfused with HTLV-1 infected blood with an enzyme linked Immunosorbent assay (EIA) which used HTLV proteins obtained by breaking up the whole virus). The EIA had become positive at a median of 53 days (i.e. half of all the recipients were shown to be infected with HTLV had a positive EIA at 53 days.



2. Using the screening assay 2/3 of infected recipients had antibodies to HTLV-1 detected by day 64 following exposure and all infected recipients had antibodies to HTLV-1 detected by day 110 following exposure.



3. However in the confirmatory assay, (a ‘western blot’ in which different virus proteins are separated on a test strip allowing antibodies to the different proteins to be distinguished - this shows as a band on the strip), all infected transfusion recipients had a least one detectable band at 55 days (8 weeks) with a band first detected in half the recipients as early as 40 days (6 weeks).



4. These data were used to estimate the seroconversion window period by Schrieber and colleagues in their 1996 New England Journal of Medicine paper estimating the risk of transmission of HTLV-1 by a blood donor infected with HTLV-1 donating blood during the window period2. They estimated the window period to be 55 days (range 38 - 72).



5. A more conservative range would be out to the midpoint between the last negative and first positive results from the Manns paper i.e. (38 - 96.5 days).



6. The screening tests used to check for antibodies to HTLV are better today than they were 20 years ago, using recombinant proteins to make then both very sensitive and very specific. (This means they are very good at detecting antibodies when they are present and have a very low rate of false positive results).





What should I do if I have a negative antibody HTLV test result and am still worried?



1) Most seroconversions have occurred within 8 weeks of exposure.



2) If the time of definite exposure (e.g. unprotected sexual intercourse with a known HTLV-1 carrier) is known to be less than 90 days then a repeat antibody test performed after this period is the most reliable test.



3) If the infection status of the sexual partner is not known and the test was performed more than 60 days after possible exposure, further testing is not considered to be helpful.





Reference List



1. Manns A, Murphy EL, Wilks RJ et al. Detection of early human T-cell lymphotropic virus type I antibody patterns during seroconversion among transfusion recipients. Blood 1991;77:896-905.



2. Schreiber GB, Busch MP, Kleinman SH, Korelitz JJ. The Risk of Transfusion-Transmitted Viral Infections. New Engl.J.Med. 1996;334:1685-1690.







Best Wishes

Poupak



Poupak Saleh
Business/Administration Manager for the HTLV Group
Tel: 020 331 21521 / Fax: 020 331 26123

Sent: 09 January 2013 06:46
To: HTLV
Subject: Testing and treatment of HTLV



Dear NHS,



I have been dealing with symptoms of HTLV since a sexual exposure over a year ago; I have been tested 6 times (5 antibody tests & a PCR test), every time negative. I am experiencing pain in my legs and back. I would like to understand what the window period is for HTLV, and if defective strains of HTLV exist that could be missed in testing, or if I need a better test, such as LIA or Western Blot. Also, I would like to know if you've tried Tofacitinib (Xeljanz) in treating your HTLV patients - it should be effective, especially with respect the HAM/TSP.



Thanks very much in advance.
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replied January 15th, 2013
Experienced User
Thanks Tony for sharing this. I have received same response from NHS yesterday. It is so saddening that people running HTLV centre spread false information knowingly it is wrong.
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replied January 15th, 2013
Extremely eHealthy
AdviseMe,

You're welcome - since their reference material is twenty years old, and they won't consider Rick Sowadsky's point that some people take YEARS to test positive for HTLV, the human race is doomed with this disease. The dozens of people that I gave this to will in turn give it to more people, and it will never end until we are all crippled or dead from HTLV.

Also, notice that my question about using Xeljanz to treat HTLV went unanswered. If these people really are dedicated to dealing with HTLV, why wouldn't they consider treatments like Xeljanz, Azacytidine, or DRACO ???

Best wishes.
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replied January 16th, 2013
Experienced User
This is all fake showoff of running htlv center. in factt they want to coverup this disease from rest of the world. The same nhs people are on national retroviral htlv board. Imagine people spreding false info and covering this disease are member of this org which promise cure and treatment for htlv suffers.
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replied January 16th, 2013
Experienced User
This is all fake showoff of running htlv center. in factt they want to coverup this disease from rest of the world. The same nhs people are on national retroviral htlv board. Imagine people spreding false info and covering this disease are member of this org which promise cure and treatment for htlv suffers.
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replied January 16th, 2013
Experienced User
Ok... So I am not 100% convinced of my negative hiv status. Probably just me being very scared, worried - I should have all I need

Partner may not have been +, very very low risk encounter, dna and antibody at 6 and a negative antibody at 12 .

My question: do both hiv and htlv ars symptoms last for 10+ weeks? Is one more or less likely to continue? Any ideas on how a healthy male not on drugs would not produce antibodies after 12 weeks?
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replied January 18th, 2013
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From MdAnderson dot Org:

The CDC and WHO criteria for interpretation of positive HTLV western blot and RIPA tests (34) are as follows: HTLV-1, presence of p24 and any of 3 env bands [gp21e (a recombinant antigen not originally included in the criteria), gp 46, or gp61/68]; and HTLV-II, no criteria established yet.

Best wishes.
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replied January 18th, 2013
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WS,

What was your (low-risk) exposure?

Your three month negative HIV antibody test means you don't have HIV. We have all been where you are, feeling sick and assuming it's HIV. We've all tested way beyond the window period, and we're all HIV negative.

Obviously there are other things that can make you sick besides HIV - for me, I had EBV, JC, HHV8, Parvo, and this time I believe it's HTLV. Every time I got sick after a sexual encounter, I assume it was HIV, and ran to the doctor and got tested for everything. Also each time (except for EBV, which took five doctors to diagnose) the doctor was never able to diagnose what was wrong with me, I had to figure it out myself years later.

Are you located in Wyoming?

Best wishes.
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replied January 19th, 2013
Experienced User
Tony, thanks. My exposure was < 1 min if oral sex after a massage.
They say hiv can not be passed by saliva, there were no sores or cuts. Anyway, initially that is what I thought and was only worried about the more common "minor" stds.

Then the crazy symptoms and I got very scared and convinced myself of hiv, but then my tests were negative - dna - 6 week and 12 week antibody.

Went to my dr yesterday, she is testing for ANA presence, parvovirus, west Nile, - and I already have negatives for ebv, CMV etc.

Question: I did a CBC at 5 weeks and 15 weeks - both normal, do you think this means immune system is normal and thus the 12 week test is conclusive? Seems logical to me?

Also...my symptoms have lasted 10 - 11 weeks so far. This is longer than most people say hiv ARS lasts I think. So that leaves me to an unknown... Maybe htlv.

I asked my dr to test me for it and she said that it usually comes with back pain so she skipped it. -

Dr is basically in a wait and see mode, suggested I test again for hiv at 24 weeks.
But agrees it is really not it either. Dr still thinks it is more that likely stress...
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replied January 19th, 2013
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WS,

You're welcome - which way was the oral sex - you received or you gave? Please note that the EBV / JC / HHV8 mentioned above were all orally acquired.

Do NOT let anyone doctor give you the "stress" excuse - we've all been there, and we all know that we are sick, not crazy. I actually got a referral from my infectious disease doctor for a psychiatrist - what nonsense!

Best wishes.
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replied January 19th, 2013
Experienced User
She gave me a bj. Most of it was just digital stimulation from her to me. The only other weird situation is that about 30 minutes later, I cleaned my self with bleach, I know crazy, the. I self pleasures, thinking if anything did get in I would get it out. I think I may have gotten something in my eye. Insane ... Hopefully the time delay and the air would have killed most everything bad from her?

I guess I will test again in 9 weeks at 24 weeks, but if I can not figure it out... What do people do? Just hoping I can rely on my 12 week test. And that there is not some crazy other new virus out there that I was unlucky enough to get .
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replied January 19th, 2013
Experienced User
She gave me a bj. Most of it was just digital stimulation from her to me. The only other weird situation is that about 30 minutes later, I cleaned my self with bleach, I know crazy, the. I self pleasures, thinking if anything did get in I would get it out. I think I may have gotten something in my eye. Insane ... Hopefully the time delay and the air would have killed most everything bad from her?

I guess I will test again in 9 weeks at 24 weeks, but if I can not figure it out... What do people do? Just hoping I can rely on my 12 week test. And that there is not some crazy other new virus out there that I was unlucky enough to get .
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replied January 20th, 2013
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WS,

I got EBV & HHV8 by receiving oral sex, and JC by giving oral sex. You don't have HIV - please take comfort in that. Like Ustas wrote, be happy that you don't have HIV or look for something else as the cause of your symptoms. Personally, I thank God everyday that I don't have HIV. This disease is tough, don't get me wrong, but HIV would have killed me dead, I just know it.

Btw, what are your symptoms?

Best wishes.
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replied January 20th, 2013
Experienced User
Thank you-
Fatigue, fever, testicle pain, eye pain at first... Then muscle and joint aches, chest pain, night sweats, sore neck, and loss of appetite, weird stool. Shooting pains Etc and erectile dysfunction now, anxiety

Now now I have sore eye, testicle, muscle and joint aches and still no appetite and erectile stuff.

I hope you are right about hiv, I think so, but until I get the 100% all clear -
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replied January 20th, 2013
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WS,

Sounds like you are dealing with many unpleasant symptoms, all of the bad. Like I said, I got HHV8 and JC virus by receiving oral, and both were very painful for me. However your comment about 100 percent all clear for HIV makes me remind you that the three month HIV antibody test is the gold standard for HIV testing. You don't have HIV, and you are not crazy neither - I've been dreadfully sick five times in my life, and none of those times was it HIV. You need to realize that there's other viruses out there than HIV.

Best wishes.
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replied January 20th, 2013
Experienced User
Tony, thank you so so much. I know - I keep telling myself the same thing. but the unknown is very scary, considering a known viral issue but unknown virus. especially when I screwed up.

Thanks again for your encouragement and reinforcement of my negative hiv test results.

Hopefully, things improve in the next few weeks.
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replied January 21st, 2013
Extremely eHealthy
And I also get the part "when I screwed up". Yes, I screwed up too, five different times over the course of 16 years. It wasn't something that I did lightly, it required much distress and manipulation to get me to that point. That's the real irony, people think these things happen out of wanting to "have a good time", when for me they happened when the entire world came down on me, and I stopped being who I am and couldn't think right anymore. That's the farthest thing from a "good time", and even worse, I have to suffer with the consequences.

Best wishes.
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replied January 20th, 2013
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WS,

You're very welcome - I know that it's terrifying being sick and not knowing what the cause is, I've been there myself five times. No one talks about HTLV, JC, HHV8, Parvo, and only sometimes are EBV & CMV mentioned. Also realize that everyone on this forum is sick and at the same time no one here has HIV.

Best wishes.
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replied January 21st, 2013
Experienced User
So... Good and bad news

New test results - all negative.

Hiv - negative 6 weeks dna and 12 week antibody
CMV - negative
Ebv - negative
Parvo - negative
ANA - normal
Strep - negative
CBC - normal 5 week and 15 week
Std panel - (hsv 1,2, syphillis, GC, chlamidiya, etc) 5 and 6 week negative

Waiting on west Nile and Lyme -

Will get mycoplasma and htlv next - any other ideas?
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replied January 21st, 2013
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WS,

Your case proves yet again that figuring out what's wrong is no easy job. As for other ideas, I don't see HHV8 nor JC virus on your list, and I've mentioned those a few times. But please leave HIV off of the table from now on, and take comfort in knowing that you don't have that.

Best wishes.
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replied January 25th, 2013
Experienced User
Hi guys

Couple of weeks ago I visited a specialist in cancer and infectious diseases. He did a very deep blood investigation and could not find any abnormalities in my blood counts, thyroid cells counts, calcium counts and all of that stuff. He said he could not find any infection at all. He also took photos of my lungs and he gave me some anti acid reflux medication.

I really feel like my symptoms could have been caused by acid reflux. It all started with that, after drinking a lot of fruit smoothies. Than perhaps my anxiety caused my throat muscles to tighten up.

However I still have a few skin conditions and if the anti reflux meds wont help he will send me to a dermatologist and reconsider testing for htlv again.

We will see if the meds will help
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replied January 25th, 2013
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M,

Good luck & please keep us informed on how you do.

Best wishes.
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replied January 28th, 2013
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M,

Good that you found a doctor that does BOTH cancer & infectious diseases. For me, I went to two separate doctors, the first was an infectious disease specialist (who couldn't find anything), and the second was a cancer specialist last June, who ran those deep tests your mentioned. All he could really find was that my sedimentation rate was a little high, but not alarmingly. Also my platelet count was high as well. While HTLV can cause both of these conditions, I've tested negative for HTLV antibody with him, and also with the infectious disease doctor (by both HTLV antibody and PCR). Since then, I have tested for HTLV antibody every two months, including today (7 times total), now 15 months post exposure. I do believe that I have it since my back and legs are painful.

Best wishes.
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replied January 28th, 2013
Experienced User
Hi

Im sorry to hear that. Thanks for all your effort again btw.
What do the drs say about your painful legs and back?

Be well
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replied January 29th, 2013
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M,

Thanks for your sympathy, and you're very welcome for my effort - the doctors didn't say anything about my pain, they'd rather dismiss me as "stressed out" or "crazy". Thanks again, and I hope that you will be well also.

Best wishes.
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