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Certain HIV positive, but negative tests (Page 67)

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April 25th, 2013
Experienced User
Scared & Tony

I'm having proclems trying to lose weight. .. no matter how much exercise and deit its impossible to lose weight. . B4 I could lose weight by excercise and diets now I'm stuck.. but @Scared I too feel like its a (Parasite) (fungus) that's in us..

My GF is going through hell right now. RANDOM MIGRAINES, STOMACH PAINS, EAR PAINS , ITCHY BUMPS ON BODY AND FACE, ARM AND FACE NUMBNESS.. DOCTORS ARE NOT TAKING US SERIOUS!
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Users who thank Depressedman for this post: TonyDewitt 

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replied April 26th, 2013
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D-man,

I went through that last summer, I was about 15 pounds heavier, and could barely walk. It's a phase of the disease where the virus interferes with your mitochondrial metabolism and causes you to get very bloated - looking at pictures of me back then, I look like a balloon. But now Im in the same phase as Scared, where I experiencing wasting everywhere.

We need to find a hematologist that will give us Azacytidine as a cohort test, to see if that improves our symptoms. Azacytidine is administered as shots given over the course of a week, then three weeks of no dosing. Im sure if we do this for 8 months (or more), like the patient in Greece, we will be fine. We have to kill this thing that is inside of us, and Azacytidine has been shown to be effective against retroviruses by Louis Mansky and we have a patient cured in Greece (58 year old man). Come on guys, start networking, find a sympathetic hematologist and tell him our story, perhaps a friend of a friend, or friend of a relative. We need someone who cares enough to do this for us, maybe someone who wants to write a medical study about us.

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

replied April 26th, 2013
Experienced User
Tony , all

Sorry for this post but msama's post and my own mind and symptoms have me reconsidering my negative hiv tests.

My exposure was no low risk for blood borne- CDC advises 1/20000; added to 1/100 to 1/1000 liklihood she was hiv + added to 2 tests > 3 months. Or 1/1000+ = I am negative

I am sorry everyone is ill but also have hope that others have tested for longer and are negative.

Seeing the new dr in 1 week.

Biggest issues now are ibs, red eyes, muscle aches, tired ness - 6.5 months now
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Users who thank wyomingscared for this post: TonyDewitt 

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replied April 26th, 2013
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WS,

You are conclusively HIV negative (we all are) - you can take another HIV test, but it will be negative. I am suffering with the same symptoms as you (ibs, red eyes, muscle aches, tiredness), and I don't have HIV, and have been tested dozens of times.

When you go to your new doctor, please bring a copy of the HTLV / Azacytidine article with you - John Meletis did a nice job of documenting the treatment of a 58 year old man with Azacytidine.

Regarding the person who infected you, where is she from? Wyoming also?

Best wishes.
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replied April 27th, 2013
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Anyone experiencing eyesight problems and eye floaters?
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replied April 28th, 2013
Experienced User
Tony,

No floaters at present. My eyes are really blood shot . but I am fairly new into this.

However an very interesting change happened on the body.

They are now pushing the window period back out to 180 days.

97% still by 90 days but no mention of immune issues causing the delay.

They explained the experts standardized and reflect current CDC.

Anyway.... I am now past 180 so will do it one more time.
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replied April 28th, 2013
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They're pushing the window period out to 180 days for HIV because they are still denying that HTLV exists, so that's the only way to deal with the epidemic of people who are reporting HIV like symptoms after three months of testing HIV negative (but are infected with HTLV instead, which has no window period). Your HIV test will be negative, the rest of us are moving towards two years of being sick and are still HIV negative, so we do NOT have HIV. A poster on the TheBody mentioned the chest rash that I've been writing about and Dr. Bob replied that NO WAY it is HIV, so again, the planet is in denial about HTLV, it's that simple and that screwed up. Every time I write into TheBody site about HTLV, I get replies like "why test for it, since there's no treatment", and "don't worry, it's tested for in blood donors". Insane!!!

Best wishes.
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replied April 28th, 2013
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WS,

Are you from Wyoming? How about the person who infected you?

Best wishes.
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replied April 28th, 2013
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Hi,

Do you have a link for us? The body site with nhl group.

Thanks a lot

Be well.

M
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Users who thank msamsamsa for this post: TonyDewitt 

replied April 28th, 2013
Experienced User
Im expierencing worse eye capabilities. My left eye is has gotten worse ever since it all started. Furthermore my eyes just hurt when the sun is shining. Im not even looking directly into the sun for example, but just looking forward with my back towards the sun. Furthermore my eyes are very dry and sometimes they hurt when I wink, because they are so dry.
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Users who thank msamsamsa for this post: TonyDewitt 

replied April 28th, 2013
Experienced User
wyomingscared wrote:
Tony,

No floaters at present. My eyes are really blood shot . but I am fairly new into this.

However an very interesting change happened on the body.

They are now pushing the window period back out to 180 days.

97% still by 90 days but no mention of immune issues causing the delay.

They explained the experts standardized and reflect current CDC.

Anyway.... I am now past 180 so will do it one more time.


Thanks for your post. Could you please post links whenever you are linking another site and a statement etc? Thanks in advance.
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Users who thank msamsamsa for this post: TonyDewitt 

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replied April 28th, 2013
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M,

Regarding the group at TheBody site that dropped dead ten years ago, I referenced it in a much earlier post (search this site for NHL) or you can go to TheBody site and search for HTLV. Sorry for not having the exact link.

Best wishes.
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replied April 29th, 2013
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I did a search for 'NHL HTLV' on this site and found the posting (on page thirty-eight) regarding the entire group that was dying on TheBody site nine years ago - again I have to emphasize that this sounds much like our group.

I'm assuming that:

1. The medical authorities didn't do crap for those poor souls - their 'story' never even made the news!!! Now it's our turn - we need to do more than just suffer and drop dead.

2. These people could all be dead, as presumed by the lack of a follow up posting. For all I know, all those people we know that posted in the old days (DFrank, et al) could be dead by now too. Okay, everyone in our group is probably still alive, but I'm just making the point that we wouldn't know once their time comes - no one's going to post to this forum that TonyDewitt died after a long illness.

Guys, please ask all of your relatives, friends, and others if they know anyone who's a hematologist, who will listen to our story, and test / treat us with Azacytidine. I had a really great phone conversation with WyomingScared about this last night. I don't want to wait for Leukemia / NHL / Mycosis Fungiodes / or whatever the hell this illness is called when it kills us.

Best wishes / Original post from 2004 below:

to dr. ben young
Sep 6, 2004


hi dr

ok, i will try my question here. i may try this with other experts here at thebody as well, just to pad my odds of getting an answer.

do you know of other retroviruses that lead to cancers? particularly lymphoma? i'm talking about something in the realm of an htlv. animals have many retroviruses such as chicken wasting virus, feline leukemia, etc. have you any information on whether or not retroviruses like these have made the jump to humans yet?

any information is appreciated. just to give you a little backround on why i'm asking: i'm in a symptomatic cluster of people with wasting syndrome, persistent swollen glands, fevers, thrush, etc. we have all slept with the same person who is also highly symptomatic. two people in the cluster have finally been diagnosed with non-hodgkin's lymphoma, and the rest of us wait for the same. expecting lymphoma or leukemia to strike is bad, but not even as bad as the wasting syndrome we all have. the whole thing is a big mess because as you can imagine, nobody even entertains that such a scenario is possible, since we all test negative for hiv-1/2 and htlv-1/2. so we are not getting any help from anyone at the moment.

thank you for your time.

so any help you may provide would be excellent.

Response from Dr. Young

Thanks for your interest at TheBody.

I'm not sure if I've got the answers that your looking for, but here goes. As you've pointed out, there are really only a few known retroviruses that infect humans and cause disease-- HIV and HTLV. Since it's pretty likely that humans acquired these viruses from contact with non-human animal contact and infection with their retroviruses, it's not impossible that other viruses could have, or will someday jump species.

I can understand the anxiety that your situation poses-- sounds like the search for the usual suspects has failed to identify a viral cause. If you have a known link one another, two cases of NHL among your group is intriguing. Perhaps a call to your local health department (or the CDC) could initiate a proper epidemiological investigation.

Sorry not to be of more help, good luck.
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replied April 29th, 2013
Experienced User
This just scares the crap out of me. I will try to get in touch with a hematologist asap. Thanks for posting Tony.

This situation just feels so unreal and weird, I just can't believe all of it.

Feels like I am living a bad dream or something like that.
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Users who thank msamsamsa for this post: TonyDewitt 

replied April 29th, 2013
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Is there any way that for those on this forum living in the us, to come together and get and see a dr together? Unfortunately im not living in the us.
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replied April 29th, 2013
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M,

Thank you for that suggestion, that's very considerate of you, especially because you aren't living in the USA. I had made similar suggestions to Scared & Wyoming. I really do think that double teaming or even triple teaming a doctor is the way to go - they need to see that we are not some rare oddball cases, but part of a much bigger epidemic.

Best wishes.
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replied April 29th, 2013
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From a study called.

Detection and cloning of new HTLV-related endogenous sequences in man.

HRES-1/1 is present in DNA of all normal donors examined.

It seems everyone has HRES-1/1 dna.
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replied April 29th, 2013
Experienced User
Hey guys,

You know for some damn reason I really wasn't paying any attention to this " Hiv Like Virus In China", but after reading about it I'm convinced this could be what we have. For those of you that haven't read about it Google it and look at all the symptoms. The symptoms match just about everyone of mine. This virus is easily spread through bodily fluids, and can be easily passed on to family members as well. It also says some of the symptoms persist for years and some never go away. TONY I'm not blowing off HTLV it's also a possibility I know that. It's just that this virus is so easily spread that it makes me wonder if this is what we have because there are quite a few of us have the same symptoms. EVERYONE read about this PLEASE and let me know what you guys think. Good Luck Everyone and God Bless.
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replied April 29th, 2013
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Scared,

I hear you, we have some really smart people on this forum, thank God for you guys, because if I was alone in this I would have taken my life already, or ended up institutionalized like DFrank. And thank God also that all the mud slingers are gone (for the time being). You guys have been really great, especially with the private messages and phone calls, which give me hope that as a group we have hope not only to save our lives, but to save other people lives as well.

I really feel like I am going downhill quickly, between the pain and the wasting.

Like msamsamsa said, it's like we're living in a unreal, weird, bad dream - if someone told me a couple of years ago that I'd be infected with a disease that the doctors don't know anything about, nor even talk or warn people about, I'd think that person was crazy. We're 31 years past the discovery of HIV, and 33 years past the discovery of HTLV, certainly by know you'd think doctors would know by now (and publish) everything there is to know about diseases. What's really freaking me out is that some of us got this from RECEIVING oral sex, which quite frankly blows my mind. I could see vaginal / anal sex as a transmission mode, even giving oral sex, but if this disease can be transmitted receiving oral sex, then the world is in big trouble. I can count 46 friends with this disease, and they certainly aren't going to stop having sex, this is going to be a huge epidemic!

And Im not saying that we have to call this HTLV, HRES, or even my favorite term, "Leukemia Virus", I'm just saying that we need to go to the nuclear option on this crap, since simply cutting out carbs or taking antibiotics is not going to stop this disease. Azacytidine is that nuclear option, and is a the way to go because:

1. It is FDA approved - this means that any doctor can prescribe it to treat ANY condition. Therefore, you don't have to prove that you have HTLV or any other virus to receive this drug - such prescribing is called "off label" and is completely allowed.

2. It has been studied to be effective against HIV by inducing "lethal mutagenesis" by Louis Mansky's group - this means that the drug interferes with the lifecycle of the virus to cause viral offspring to be non-infectious, eventually causing the virus to become extinct (i.e. you're cured!). While we don't have HIV, we would want a drug that's able to make HIV extinct, since our disease is so much like HIV.

3. It has actually worked against HTLV in a patient in Greece after 8 months of dosing. Honestly, that's all I needed to hear - 8 months of dosing could save us from a lifetime of suffering. The dosing occurs for 7 days straight, then you take off three weeks.

Im sorry but NO treatment could be worse than the pain that I have endured for the past 18 months, my entire body is in unbelievable pain on a regular basis. I'm not the type of person who takes pain killers, so you could imagine some days I want to scream in agony but have to hide it from my coworkers and friends and family.

Early in the HIV epidemic, people with HIV came together and created "guerilla clinics", since they knew that the medical industry wasn't doing crap for them. Like I've said in the past, we are just like those people with HIV 30 years ago, doctors either don't know or don't care about us, so we have to fend for ourselves.

As an extension of the suggestion to find a sympathetic hematologist, perhaps finding a gay one would be even better?

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

replied April 29th, 2013
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Hi scared,

Yes ive read about it. It could be a possibility, however the list of symptoms is just extremely big and based on that list I personally think that everyone could relate to it.

If I remember correctly: in china studies are currently be done concerning that type of virus/disease/etc. I cant find the link.
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Users who thank msamsamsa for this post: TonyDewitt 

replied April 29th, 2013
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This does feel like a very bad dream and really weird! It has took all my mental power and changed my whole life! I swear drs think were crazy! I already told my Brother."I probably won't die from Hiv, but I will be diagnozed with some strange deseace.

Please google Stomach deceases. Bacteria and Worms can cuase our symtoms.
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replied April 29th, 2013
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S49
I have read about it and it seems it has only affected people from china. If I recall i think they were saying they could not isolate a virus from the people suffering however they did have clinical symptoms. I forget the article but they were saying it was most likely caused by a disrupted gene most likely inherited.

This has been an unimaginable living nightmare.
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replied April 30th, 2013
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Hi everyone,

I believe they said its already in the U.S. as well, I'm wondering this because I believe this woman was a prostitute (well I know she was), and you guys know prostitutes travel all over the country so who knows who she's been with. I just think we have something that's either this or some virus that hasn't been discovered yet. I'm also having trouble sleeping on my sides at night it's like my ribs are sore and tender.

Definatelyworried, I feel you man this has been one hell of a nightmare, and total life change for me I'm so depressed man I think about suicide everyday.
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replied April 30th, 2013
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Scared,

My side was hurting so much that I couldnt sleep on my side, especially in the area of my liver. I feel that it's HTLV, it has no window period, it makes people sick the way that we are sick, it's the closest relative it HIV. If you look for "defective HTLV", you will see that people infected with this strain of HTLV continue to test negative, even though they still get sick & die. No one ever warned any of us about this disease, it's all over Japan, Brazil, the Carribean, and indigenous tribes, and no one ever told us that it was out there.

Best wishes.

Best wishes.
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replied April 30th, 2013
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Hey man...if you guys organize something to go talk to a doctor about, count me in! I will go anywhere in the US to help bring awareness to this or to try to figure out whats going on! the last physician i saw said to me "its all in your head...if you come back again i will refer you to a psychiatrist....". I'm starting to about HTLV as a possible issue because the girl I was with that gave me whatever I have told me her last bf was from Carribean.... I wish I could go back and never called her ass...damn it
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replied May 1st, 2013
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MGFCG,

Thanks for your enthusiasm, and believe it or not, I got the SAME speech (psychiatry referral) from my infectious disease doctor, who doesn't EVER test for HTLV in her patients LOL, since to her HTLV is only a disease in the Carribean, to which I replied "don't people from the Carribean take planes here?".

We all wish that we didn't have sex with the people who made us sick, there's not a day that I don't replay the whole thing in my head, I was really upset because the people who were supposed to care about me didn't, so I went with someone I didn't know. The only bright side is that this isn't HIV, which would cost us millions in treatment, and this is curable - if a 58 year old man in Greece can be cured, then we can too. We just need to find a hematologist who can think outside the box.

Best wishes.
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replied April 30th, 2013
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S49
Thanks for sharing your thoughts with us, you are not alone. I also think of suicide constantly, the only thing that stops me is the fear that I might wake up in a worst situation. I beleive in heaven and hell, its my only hope of happiness once again. Sometimes i feel like its going to be ok but that thought gets overshadowed by extreme fear.

Tony
I have read about the defective htlv and its elusive detection, it seems that it is not only rare but it only occurs after a long duration of infection after the htlv dna starts being deleted, they detect this status by using non commercial p40 tax eias and pcr probes. P40 tax has the longest window period for detection and its responsible for most of the pathogenicity of htlv. So you are doing the right thing by getting tested while possible seroconversion.

I think Ron Jeremy would have anything we would. You guys should google his name and see what you find I belive he is 60 years old. He did recently have heart surgery, but they relate that to diet I believe that he and all the women he has slept with have only been tested for HIV, Syphillis, chlamydia, and ghonorea.

I hope we get over this nightmare soon Sad
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replied May 1st, 2013
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DW,

You're right - porn stars screw thousands of people for decades and aren't sick like us - it's very unfair.

Best wishes.
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replied April 30th, 2013
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Tony
I don't know if you read this study before. Note it talks about the rairity of these sequences.


Detection of Human T-Lymphotropic Virus (HTLV) tax Sequences in New York City Blood Donors Seronegative for HTLV Types 1 and 2
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replied May 1st, 2013
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I've read the article a while back - it doesnt sound very rare for a donor to test positive for the Tax protein, yet blood banks don't routinely test for it LOL
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