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Post by ashyami86343 on Sept 4, 2018 18:36:56 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.” Hey In the beginning. Thanks for asking, i am feeling better & better... regarding your post. Like i said as your name, you are in the beginning of infection. you are not different in research and feeling the infection. I am reminding you again, we all crossed the path you are now, i know how i was researched in the website and stayed in the front gate of the big advanced research institute in India. You got to listen others, i have seen lot of links.. as you. Moderator, you have created this board to connect the infected people and every newly infected person will be like this. we got to admit and explain them, i feel that is the purpose we are. In the beginning, please create a new thread it may help the other new persons, we have bored of seeing such posts in reality but sure we are with you at any cost when there is a possible solution or at least a diagnosis.
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mod18
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Post by mod18 on Sept 4, 2018 19:45:35 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.” I thought my explanation was good enough, but I'll try to clarify. 1. Go ahead and create a separate thread. 2. I have no agenda of disproving your theory. If you will prove beyond any doubt that we have is HIV - not only me, but I think everyone will accept it. What you have brought up so far is not proof but an extrapolation of some trends that show up for late seroconversion HIV patients and nothing to prove we are those patients. I have my definition of proof, other members have theirs or will have to establish it for themselves. For me it is positive test with ELISA, Western Blot, PCR, RNA sequencing and preferably all of the above. 3. I do not like deleting anything and I'm not saying I will. My position on this is that there should be as little moderation as possible as long as information is not spam and discussion is civil, but I also think that we need to be discussing facts and not wants, so I'm just letting you know in advance that if you will try to be bending facts to fit your or any other want theory I or another moderator might have to cleanup in order not to lead people in the wrong direction. As long as we are talking facts you have nothing to worry about and even if I or others do not agree with you, we should find a common ground in a civil discussion. Deleting stuff is a last resort action in my book, you have been civil and the conversation you started has a right and needs to exists, but because this has been discussed so much in the past and because most older patients I'm sure will agree with me that what we are dealing with is not HIV - please do it in a separate thread. 4. Take all the time you need.
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mod18
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Post by mod18 on Sept 4, 2018 20:15:22 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. As well as metagenomic sequencing of plasma RNA that showed no HIV RNA present.
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Post by ScaredMatt on Sept 4, 2018 21:01:35 GMT
I actually found a study that quantified that 12% of people take longer than 1 yr to test positive. You should be more careful about what you're sharing, for this will trigger unnecessary panic among the other members. I was infected more than 18 months ago, so believe me when I say that I've been where you are now (spending many hours a day reading HIV material on the internet). I know what study you are talking about, so let me say that you are utterly mistaken about it. There is the link to the mentioned study: www.ncbi.nlm.nih.gov/pmc/articles/PMC3470924/This paper discusses the methods used identify early infection in HIV+ folks. In this specific study, they analyzed the Avidity Index (AI) method, in which they measure this biomarker, and depending on the result, they will label you as a "recently infected" or not. The study was done because some individuals might be wrongly labeled as recently infected depending on the threshold value for this biomarker (AI). In the conclusion, the author says: "A threshold of 0.8 has previously been suggested as a cut-off to classify individuals as recently infected, based on sensitivity and specificity of the biomarker 6 months after the midpoint of the seroconversion interval. We find such a threshold to be associated with a mean window period of 202 days (95 per cent CrI 174, 245). The probability that the window period is longer than one year is not insubstantial, estimated to be 12 per cent. For a period of three years this probability drops to less than 1 per cent. A threshold of 0.75 or 0.7 may be an alternative choice for incidence estimation, since the probability of the window period being greater than one year is low, at 7 and 4 per cent, respectively." In other words, the author is saying that 12% of HIV+ people will not reach the 0.8 mark of the Avidity Index until the end of the first year. It doesn't mean they are antibody negative (on the contrary, all subjects in this research were already diagnosed as HIV+). That's why he suggests that they use 0.7 or 0.75 values as a threshold for labeling such people as recently infected. That being said, I urge you to carefully read those medical papers to avoid misunderstandings, especially if you're willing to share any opinion about it. And most of all, if you have any doubt, post the link, so other members will help you. As many others have pointed out, most of us have been dealing with this disease for YEARS (not months), with all antibody tests resulting negative, plus RNA tests with undetectable viral loads. Many of us have been following up CD4 counts, and all of us have totally normal values (mine are actually higher than average). If you're willing to spend the rest of your life testing for HIV, good luck with that.
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Post by In the beginning on Sept 5, 2018 4:35:04 GMT
Hey guys. I wish you the best of luck in your Search. This board was pretty quiet and if nothing else I’m glad I could spark the discussion that gave you guys your first few pages in a time when you all were trying to reestablish the forum. I Recommend at least an annual hiv test in hopes of catching it if you are infected with hiv and the dormant virus finally awakens from its state of latency within memory T cells within the reservoir in the lymphatic system which would make it exempt from detection within the bloodstream. Furthermore I’m sure that everybody here would have continued to on occasion test for hiv just like ScaredMatt recently did again and I’m sure many others if not everyone. Because whilst everybody here is patting each other on the back trying to reinforce through each other’s posts the disbelief that it’s hiv. When it truly comes down to it you know and acknowledge that with confirmed long term cases of hiv seronegativity and rna not detected that it being hiv is a slim but feasible possibility(although not preferred). Also the reason everybody is here is because they clearly take their health seriously and I’m certain they have full knowledge that potentially missing an hiv diagnosis can have catastrophic consequences which I’m sure is a risk that nobody here would be willing to take with their own health in spite of all their anti hiv posts. Thus proving. I serve no purpose trying to convince you it could be hiv as you already are aware of the fact and will surely continue to test(not because of me or for me, but for yourselves) I wish everybody the best and if anybody was interested in anything I had to say, feel free to let me know and I will join this forum just in the name of personal messaging you my email. I have a wealth of research to share if anybody is interested. it just needs to be compiled because it’s all over the place. However I did not intend to upset you guys. Whether I’m right or wrong I wish you all the best no matter what life has in store for any of us.
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Post by In the beginning on Sept 5, 2018 4:50:45 GMT
Lastly Addressing what the study in question stated was a recommendation that the signal to cut off ratio be dropped down to .6 instead of 1.0 due to the time it would save people being told they’re negative by drs when it is already clear to lab technicians performing the tests that although they are clearly infected with hiv. They do not qualify as “hiv positive” as per protocol. Thus cutting the amount of time down between point of infection to diagnosis/treatment. www.ncbi.nlm.nih.gov/pmc/articles/PMC3470924/“The estimated 90th percentile of the window period distribution is estimated with high imprecision for this sample of individuals. For a threshold of 0.8, the model predicts that only 88 per cent of new individuals will cross the threshold within 12 months of seroconversion. This compares with 93 per cent for a threshold of 0.75, 96 per cent for a threshold of 0.7, and 99 per cent for a threshold of 0.6.”
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Post by In the beginning on Sept 5, 2018 5:02:56 GMT
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Post by ooen123 on Sept 5, 2018 8:56:55 GMT
i agree with you ,ape have update the RNA test, it maybe kind a virus act like HIV.DO YOU have other contact i can contant with you ?
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Post by Nouseforaname on Sept 5, 2018 10:48:32 GMT
Did you read the article? It zooms in on hiv that is undetectable because of antiviral therapy... it is well known that it is possible that when you get antiviral therapy hiv can become undetectable and latent... but that is only after therapy. For a new infection without therapy: hiv will replicate and immune response (antibodies) kick in... if for any rare reason (1 in a million hiv cases: only 25 known to date) this doesn’t happen: your hiv rna will be through the roof and will be detected wit pcr/nat rna test. Also a 4th generation test will prolly also detect it because of the high replication rate p24 distribution will be massive. Also on a side note: if this happens you will be deadly sick (aids) within a couple of months.
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Post by patientlywaiting on Sept 5, 2018 23:42:17 GMT
We need to stop these pointless hiv topics. Every time someone new shows up we waste all this dialog and clutter the forum. We are just repeating the same old problems as last forum.
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Post by pos789 on Sept 6, 2018 1:46:59 GMT
We need to stop these pointless hiv topics. Every time someone new shows up we waste all this dialog and clutter the forum. We are just repeating the same old problems as last forum. it surely is Retrovirus。we know it。the only thing we can do now is to find lab do the virus isolation and identification.and use the former therapy and drugs to treat it. first of all find more lab and scientist to study it.no more argument,chinese patient have talk it for decades.
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Post by patientlywaiting on Sept 6, 2018 2:46:23 GMT
It is not definetly retro. Possibly some us have a retro or some of us have some type of autoimmune reaction to infection. Not necessarily a retro infection. Please stop with your definitives on what this is. Nobody knows. The Chinese don’t know shit and neither do we. To act otherwise is foolish and goes against any type of scientific approach to this. We need to stop these pointless hiv topics. Every time someone new shows up we waste all this dialog and clutter the forum. We are just repeating the same old problems as last forum. it surely is Retrovirus。we know it。the only thing we can do now is to find lab do the virus isolation and identification.and use the former therapy and drugs to treat it. first of all find more lab and scientist to study it.no more argument,chinese patient have talk it for decades.
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Post by Nosueforamane on Sept 7, 2018 17:03:22 GMT
(Inthebeginning) said: "I’m curious if the only progress youve made is the “conclusion” that it is not hiv."
(mod18) said: "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"
"As of June 2018 antiretroviral therapy seems to be most effective in relieving the disease symptoms for some(but not all) patients.
ART treatment option as tested and described by the Chinese community:
a. combination of tenofovir,lamivudine and efavirenz, clearly effective , continuously alleviating symptoms, with the immune index of all people of the group tending to become normal.
b. combination of tenofovir, lamivudine and isentress, clearly effectve, continuously alleviating symptoms, with the immune index and the value of cd4 of all the people of the group going up toward the normal.
c. combination of tenofovir, lamivudine, and talunavir, clearly effective , continuously alleviating symptoms, with the immune index of all people of the group tending to become normal.
Isentress and Trudadu seems to be an effective combination for some."
Multiple treatment approach were made by patients here and here is a list of what made difference to me:
7 month of valcyte took my health level form 40-80% in the second year then I had a relapse in the third year ( I took it after a long acute phase )
4 month of moxifloxacin and 1.5 months of levlofloxacin antibiotic after it took my health from 40-80% in the third year ( I took it after a major pain , lungs issues , prostatis and all main phase 1 symptoms increased )
Now am on My first year on ARV treatment ( truvadu ) and am doing fine it took me from 60-85% , I do reach 75 sometimes but I do reach 95% normal too ! ( I took this as my last choice and I know that truvadu is not enough by it self after reading and talking to people who tried this before so am changing my pills soon and am still under 2 choices to see which one I should approach"
I think that starting a mandated "monthly update log" thread that keeps track of definitive progress that has been made in the last 30 days is a great way to not lose the progress we actually do make. Once something is eliminated as a possibility or a new treatment is discovered it should be added to the updates.
I feel this would be the necessary improvement needed to upgrade from the mistakes of the original forums that lost all that critical data history that was scattered all over the forum and lost to disorganization. And also assuredly prove to any and all readers like inthebeginning that we are making progress.
I'm pretty sure everyone agrees and does not want to see that happen again.
So far per the moderators quoted above this is what we have learned
1) Symptomaticly it most closely resembles HIV.
2) It is most effectively treated by HIV anti virals.
3) Method which yields best results is the 3 antiviral approach just like hiv treatment protocol.
4) Use of only 1 or 2 anti viral medication is not as effective or only effective for a short period of time before viral rebound occurs as seen in hiv.
5) Antibiotics don't work longterm.
6) We know with 100% certainty it's not hiv.
Can any one think of anything else to add?
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Post by pos789 on Sept 10, 2018 2:00:08 GMT
It is not definetly retro. Possibly some us have a retro or some of us have some type of autoimmune reaction to infection. Not necessarily a retro infection. Please stop with your definitives on what this is. Nobody knows. The Chinese don’t know shit and neither do we. To act otherwise is foolish and goes against any type of scientific approach to this. it surely is Retrovirus。we know it。the only thing we can do now is to find lab do the virus isolation and identification.and use the former therapy and drugs to treat it. first of all find more lab and scientist to study it.no more argument,chinese patient have talk it for decades. i dont want to argue about that, when any Retrovirus infect human, all symbol are the same. sure it isn't hiv.maybe part of the virus not hiv.so it is no use checking hiv antibody. this is chinese scientst vaccine test. it is not a disease from nature. i want you guys get in contact each other,and work in group to get help,find expert asking question about that,and ask help from him, letting him tell you who esle can offer help ,which lab can offer help,you get information about the lab.there are people solve the money they need . in fact ,whether it is retro ,you also need do that,
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Post by pos789 on Sept 12, 2018 3:50:48 GMT
news from a expert:The disease has many studies in African countries. Who can contact the patients and institutions over there?
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