|
Post by hardwaytolearn on Sept 2, 2018 7:37:47 GMT
Out of interest which country is everyone from? I’m in Queensland Australia.
|
|
|
Post by In the beginning on Sept 2, 2018 13:07:15 GMT
Hey Matt I’ve read the entire other forum beginning to end. And was beginning to read the original forums on the unidentifiable std when they were shut down. I feel for you and hope everything works out the best. I don’t mean to upset anybody here or the narrative. And I also know that under no circumstance does anybody want to have hiv but I don’t think that having hiv (which has a relatively effective treatment) is the scariest thing out there. If put into perspective the alternative that we have a std that is almost exactly the same yet has no protocol to identify or treat seems much scarier to me. My thought is that yes the hiv tests on rare occasions may detect within 6 months but that is slim to none. You don’t find it odd that almost everybody every time says your results at 13 weeks are more than likely going to be negative and almost every time no matter how high the risk they receive a negative however symptoms persist. I believe that due to the fact that majority of hiv cases (outside Africa) are in prostitutes, intravenous drug users and homosexuals, all of which are aware that they live a lifestyle of high risk behavior to contracting the virus are almost willfully oblivious to the fact that they know something is wrong. And it is easy to as well, What with all the physicians and ID drs telling us that there’s nothing wrong according to their tests. Yet people who are not floating around in a sea of constant high risks can pinpoint exactly when their body began to act weird and continue to question it for extended periods of time. Meanwhile all of the intravenous drug users, homosexuals, and prostitutes remain willfully ignorant to the fact that they’ve been infected merely because the prospect of having hiv is terrifying (many people don’t want believe hiv tests even after many positives) so it’s easy to understand their holding out hope that if the dr says that they don’t got it then they don’t got it(while also concluding that no test is 100% accurate. All the while if you listen to stories about people infected with hiv prior to diagnosis they are riddled with stories of textbook hiv symptoms. The internet is a huge database of people’s experiences with hiv taking longer than 3 to 6 months. All of which is dismissed by assessment forums as “anecdotal”. However there are an absurd amount of testimonials exemplifying such. I’m curious as to why these experiences are dismissed when all the other data in research is merely “anecdotal” things recorded by a dr or reasearcher that they were told by a patient or subject. Many many people take over a year to years to test positive. But hiv magazines and assessment forums are reliant on the onward transmission of infections to keep the lights on. If you go to poz and read through the “living with” section you will see the contempt that they hold for people who are negative. I couldn’t tell you how many times I read somebody wanted to protect their spouse because things were not right and they were presenting a multitude of hiv symptoms but they were advised everything was fine and to go on with their lives. And no more than 2 weeks to a month later they were right back explaining that their spouse was now showing similar to identical symptoms. I’m also curious why the forums and scientific and medical community state that due to all the advancements in hiv testing that has been made in the last 20 yrs that the window period has bn closed from years to 6 months when the 4th generation hiv test was invented in 1998 and has not been updated since. The only updates that have been made is in hiv rna pcr and dna testing both of which are concluded as unreliable for diagnosis. I and my wife have tested repeatedly negative by 4th generation and rna pcr testing repeatedly however my ID dr continues to advise I test every 3 months. I am at 7 months now. It is interesting how the poz and medhelp forums cherry picks information that they deem “reliable” and then dismiss other points of info from the same sources that does not suit the hiv positive persons “we’re not infectious, and it only takes 3 months narrative” I welcome you to read back every locked thread in the i just tested poz section and tell me if you begin to notice a trend. I would also like to address I am not hating on Iv drug users homosexuals or prostitutes. I wish the best to all through their hard times. I will post any and all examples I find that point to late seroconversion being a far more regular occurrence than acknowledged. There’s is quite the multitude.
|
|
|
Post by In the beginning on Sept 2, 2018 13:15:27 GMT
I will write more soon. Please just give me time. That was quite the lengthy block of text. Feel free to ask any questions. Let’s please just keep it civil. I also have a wife and family that rely on me so I may take time in between writing so please nobody think I’m ignoring them. I too had an amazing life before all this happened and now spend all my free time researching which has lead me to my theory.
|
|
|
Post by In the beginning on Sept 2, 2018 13:33:20 GMT
I would also like to acknowledge that the reason I referenced the high risk people who ignore the telltale signs they’ve been infected with hiv is because they are the majority who constantly ignore the risks. Unlike individuals like us who made a mistake. Realize the singular risk and acknowledge that for some time something is going on with our body. We carry a torch for wanting to know what is happening. Where as the majority who on a regular basis puts themselves at risk really just want to believe their negative and really don’t want to know what the root of all their ailments are for fear of the worst that it’s hiv. IE a good example of what I’m saying would be an individual may be infected in 2010 and continue from that moment on to experience symptoms consistent with hiv infection but are told that they are not infected due to negative tests. Without asking one single additional question they proceed back to their incredibly high risk lifestyle. Only to test positive let’s say in 2016 and be told by said physician that their infection must be from the last 3 months. I believe this being the scenario that plays out most often with the majority of the people who live a high risk lifestyle is why the establishment pushes this 3 months is conclusive narrative.
|
|
|
Post by ScaredMatt on Sept 3, 2018 0:48:27 GMT
I would also like to acknowledge that the reason I referenced the high risk people who ignore the telltale signs they’ve been infected with hiv is because they are the majority who constantly ignore the risks. Unlike individuals like us who made a mistake. Realize the singular risk and acknowledge that for some time something is going on with our body. We carry a torch for wanting to know what is happening. Where as the majority who on a regular basis puts themselves at risk really just want to believe their negative and really don’t want to know what the root of all their ailments are for fear of the worst that it’s hiv. IE a good example of what I’m saying would be an individual may be infected in 2010 and continue from that moment on to experience symptoms consistent with hiv infection but are told that they are not infected due to negative tests. Without asking one single additional question they proceed back to their incredibly high risk lifestyle. Only to test positive let’s say in 2016 and be told by said physician that their infection must be from the last 3 months. I believe this being the scenario that plays out most often with the majority of the people who live a high risk lifestyle is why the establishment pushes this 3 months is conclusive narrative. So you're basically saying that everyone in this forum might be infected with HIV? I don't want to be rude, but if you're going to throw your theories and try to scare other sufferers, please leave this forum. There are dozens of forums on the internet filled of people pursuing a HIV positive result. This is not one of those forums. Admin/moderator, I suggest you to delete messages posted by those trolls. I wish every comment needed a moderator approval before being posted.
|
|
|
Post by In the beginning on Sept 3, 2018 1:22:50 GMT
I don’t know who has what. Just sharing my theory. No need to be upset it can go one of three ways. 1)I’m right or 2)your right or 3)we’re both wrong. I am not upset with what anybody else’s thoughts on the matter and I personally would love to be wrong. I’m here for the same reason we all are. Trust I also found solace in wanting to believe that it was anything but hiv. None the less only time will tell. I don’t need you to subscribe to what I think. This is only my thoughts on the matter. Just sharing my thoughts on the undiagnosed symptoms that we are having. Everybody is free to speak their mind on what none of us know that we have. If you truly believe I’m wrong then my thoughts should have no affect on you. However if you fear that I’m correct then maybe you should explore the possibility. Because at this point anything is a possibility and just being afraid of a possibility doesn’t make it any less of a possibility. No troll here my friend. I hope that we all can work together to successfully figure this whole thing out and support each other through these hardships. Because I’m sure the people in everyone’s lives are just like those in my life and have no interest in discussing something they don’t believe in. Time is the only answer my friend. Everybody don’t forget to do your best to live life in the meantime. Life is precious and there’s no telling how long any of us will be here. So let us not fixate and miss life as it passes us by. Thank you for your time.
|
|
|
Post by ashyami86343 on Sept 3, 2018 9:17:55 GMT
I don’t know who has what. Just sharing my theory. No need to be upset it can go one of three ways. 1)I’m right or 2)your right or 3)we’re both wrong. I am not upset with what anybody else’s thoughts on the matter and I personally would love to be wrong. I’m here for the same reason we all are. Trust I also found solace in wanting to believe that it was anything but hiv. None the less only time will tell. I don’t need you to subscribe to what I think. This is only my thoughts on the matter. Just sharing my thoughts on the undiagnosed symptoms that we are having. Everybody is free to speak their mind on what none of us know that we have. If you truly believe I’m wrong then my thoughts should have no affect on you. However if you fear that I’m correct then maybe you should explore the possibility. Because at this point anything is a possibility and just being afraid of a possibility doesn’t make it any less of a possibility. No troll here my friend. I hope that we all can work together to successfully figure this whole thing out and support each other through these hardships. Because I’m sure the people in everyone’s lives are just like those in my life and have no interest in discussing something they don’t believe in. Time is the only answer my friend. Everybody don’t forget to do your best to live life in the meantime. Life is precious and there’s no telling how long any of us will be here. So let us not fixate and miss life as it passes us by. Thank you for your time. Hi, In the beginning. I was in the state as you until 1year, later moved on other than hiv. I am sure it will be for you and i know it was same for scared too , from previous ehealth forums. One thing made my mind to change is everybody agrees that only blood transmission will make you hiv infected. But how my neighbors and colleagues are infecting by just by touch.. or sweat, saliva ? probably we also infected in similar way, that means we could get rid off this infection ?
|
|
|
Post by ashyami86343 on Sept 3, 2018 9:19:23 GMT
during my first year I spent almost entire my office hours in website to understand the contagious disease.. nowhere its diagnosed
|
|
|
Post by In the beginning on Sept 3, 2018 13:01:22 GMT
Hey Ashyami thanks for the welcome and yes I’m familiar with your story as well. How are you doing these days? I’ve devoured so much data through medical journals as well as personal testimonials however I never saved any of the links so finding most of it will be a pain. Time consuming but the time I do have I will spend in search to share with you all. I would like to send a block of links as opposed to posting on an as I find basis. But I would love to hear what everybody else thinks and participate in this support group from here on out. I read the ehealth forums for about a month before finishing that front to back. And started reading the board that just shut down. So when that shut down I just went back to the medical journals and anything else I could find. I actually found a study that quantified that 12% of people take longer than 1 yr to test positive. I’m just so bummed out because my wife and I were planning to start trying to have kids and now this is keeping life on pause because I would never want to bring a child into the world whilst dealing with a messed up situation like this let alone infect them at birth. I’ve lost almost all hope in these drs
|
|
|
Post by patientlywaiting on Sept 3, 2018 15:48:49 GMT
Hello everyone. I believe I can attribute my symptoms to a extreme case of reactive arthritis which is usually caused by a genital infection. This makes the most sense for me maybe not for you.
|
|
|
Post by In the beginning on Sept 3, 2018 18:00:17 GMT
I also wanted to recommend for those that are consumed by this to a full on obsessive fixated crippling degree. I was prescribed 15mg mirtazipine by my primary care provider. It’s for insomnia/ocd/severe depression. It helped me take the extreme anxiety out of the equation. I’m still concerned and know something is very wrong. But that crippling anxiety that I had has eased into manageable sadness. I take one before bed and get a relatively reasonable nights sleep. I strongly recommend anybody with insurance give it a try. It’s only about $5.50 per month. I stopped taking it after a month thinking I had made the progress accepting this on my own and not attributed to the meds and I went back to a nervous mess. So I got back to taking it and now understand it really does help even everything out. And for those losing weight it also gives an appetite if that is something your having trouble with. It’s primarily for depression so there’s really no way to abuse the medication. So you can straight forward ask your Dr for the script and they shouldn’t have a problem filling that for you. Hope this helps others with the psychological aspect of your troubles.
|
|
|
Post by patientlywaiting on Sept 3, 2018 21:32:41 GMT
I agree with this 100% I have been taking celexa and can describe almost the exact same results. I still take this disease very serious but it is not as crippling. I also wanted to recommend for those that are consumed by this to a full on obsessive fixated crippling degree. I was prescribed 15mg mirtazipine by my primary care provider. It’s for insomnia/ocd/severe depression. It helped me take the extreme anxiety out of the equation. I’m still concerned and know something is very wrong. But that crippling anxiety that I had has eased into manageable sadness. I take one before bed and get a relatively reasonable nights sleep. I strongly recommend anybody with insurance give it a try. It’s only about $5.50 per month. I stopped taking it after a month thinking I had made the progress accepting this on my own and not attributed to the meds and I went back to a nervous mess. So I got back to taking it and now understand it really does help even everything out. And for those losing weight it also gives an appetite if that is something your having trouble with. It’s primarily for depression so there’s really no way to abuse the medication. So you can straight forward ask your Dr for the script and they shouldn’t have a problem filling that for you. Hope this helps others with the psychological aspect of your troubles.
|
|
mod18
New Member
Posts: 26
|
Post by mod18 on Sept 4, 2018 2:29:05 GMT
I don’t know who has what. Just sharing my theory. No need to be upset it can go one of three ways. 1)I’m right or 2)your right or 3)we’re both wrong. I am not upset with what anybody else’s thoughts on the matter and I personally would love to be wrong. I’m here for the same reason we all are. Trust I also found solace in wanting to believe that it was anything but hiv. None the less only time will tell. I don’t need you to subscribe to what I think. This is only my thoughts on the matter. Just sharing my thoughts on the undiagnosed symptoms that we are having. Everybody is free to speak their mind on what none of us know that we have. If you truly believe I’m wrong then my thoughts should have no affect on you. However if you fear that I’m correct then maybe you should explore the possibility. Because at this point anything is a possibility and just being afraid of a possibility doesn’t make it any less of a possibility. No troll here my friend. I hope that we all can work together to successfully figure this whole thing out and support each other through these hardships. Because I’m sure the people in everyone’s lives are just like those in my life and have no interest in discussing something they don’t believe in. Time is the only answer my friend. Everybody don’t forget to do your best to live life in the meantime. Life is precious and there’s no telling how long any of us will be here. So let us not fixate and miss life as it passes us by. Thank you for your time. Like ScaredMatt said this is definitely not HIV. This infection does look like HIV symptomatically and it does cause immune abnormalities for some people which can sometimes look like those of HIV/AIDS, but the mode of transmission in particular goes against all the accepted knowledge of HIV virus. Besides that I do not recall seeing even a single person with our distinct set of symptoms on the old forum or anywhere else to test positive for HIV. I'm not saying that cases like that don't exist, but those would be some extremely rare exceptions and nothing remotely close to a pattern. People go on testing for HIV for years, dozens of times, different tests including western blot just to find nothing. I believe it becomes clear for everyone past some point and it will become clear to you too if you keep testing that what we are dealing with is not HIV. All this has been discussed to the bone in the past too, so while I understand that we are missing all that discussion from the old forum, let's not start it here in the main thread. If you want to continue the topic that you have started I suggest you start a new thread. I also want to be upfront and I definitely do not want to come around as rude or dictatorial, but I cannot guarantee that your thread or posts won't be deleted should there be extreme fallacy of logic. My intent is to support free discussion as much as possible, but as long as everyone's arguments are logical and supported by evidence. The overwhelming evidence is that our condition is not caused by HIV.
|
|
|
Post by In the beginning on Sept 4, 2018 16:31:16 GMT
I will back up everything I propose with data. Deleting what I say if all rules have been followed proves that your rules serve no purpose. That is 100% representative of dictatorial approach and proof that this is not the “let’s figure out what this illness is boards” and actually only seems to exist to disprove the possibility this is hiv.(which I understand is a scary concept) I’m curious if the only progress youve made is the “conclusion” that it is not hiv. However this isn’t an open discussion if you are openly admitting that you plan to delete comments that follow the rules yet don’t suit the direction you would like to steer the narrative. I just think that the supposed nature of these forums being investigative of “let’s figure out what this illness is because we have absolutely no idea what it is” would be doing a disservice to discredit anything as a possibility until an answer is discovered. I find the thought process of “we have no idea what this is but we know what it is not” is ludicrous and 100% a hindrance to the legitimate purpose of what an investigation is. I wish I had more time to produce documentation of evidence supporting my theory. However my wife and I are taking a vacation this week so I won’t have much time till the beginning of next week to do the proper research. Just like you wish the world would provide for you, all I ask is an open mind and patience. However I will conclude with this. www.aidsinfonet.org/fact_sheets/view/102?print=true“About 5% of people take longer than two months to produce antibodies. Testing at 3 and 6 months after possible exposure will detect almost all HIV infections. However, there are no guarantees as to when an individual will produce enough antibodies to be detected by an HIV test. If you have any unexplained symptoms, talk with your health care provider and consider re-testing for HIV.”
|
|
|
Post by Nouseforaname on Sept 4, 2018 17:18:42 GMT
Dear ‘inthebeginning ‘. What you do forget is that all posters here also tested negative with a nat/pcr rna test.... no chance to be positive without antibody and without rna.
|
|