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Post by kusum8 on Nov 12, 2018 1:23:06 GMT
Thanks so much for the response. I’m feeling way better these last few days.....think I might try to pretend I’m fine and stay off the forum for a bit. Keen to email though - are you in the Phoenix Rising forum? - if so send me a PM, ‘Tired33’ Cheers Sorry to hear about your bad health condition. I also have major issue related to the mouth and teeth. White tongue, gum inflammation, formation of tar in tooth, itching in gum, reduce in gum level. I also have pain in right ear too much and cracking sound in head with swollen lymph node in jaw and behind the ear.
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Post by In the beginning on Nov 13, 2018 14:08:22 GMT
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Post by Tsuneyasu on Nov 13, 2018 19:36:34 GMT
I wasn’t part of the old forum, but did anyone there report AIDS-related opportunistic illnesses? Like PCP, Kaposi Sarcoma, etc? It’s just weird that I have not seen a single post where a regular poster has come back saying either of these things: 1. Finally tested HIV+ 2. I’m cured and no longer ill 3. I developed AIDS/cancer/I’m in hospital about to die Surely everyone would have to have had one of those three scenarios? I guess the other alternative is that they just died a very sudden death....? Most of those who turn very ill and die don't follow up on their situation I'd guess, plus their deaths are ruled natural causes, just like in China. One thing for sure is that no one ever came back with a cure.
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Post by In the beginning on Nov 14, 2018 0:49:43 GMT
To which I replied: “Some people claim it to have resolved, some give up paying it extra attention. Honestly after 5 or 6 years I can only imagine once your comfortable wearing your new “less healthy skin” how long can you really carry a torch for? All the whilst making no progress toward a diagnosis besides drs acknowledgement of peculiar findings. If you read the ehealth forums all the way through you’ll see many just had to walk away from the fixation because despite being less healthy there was no diagnosis or resolution to the situation. So people just got on with their less healthier life. Others may very well have died which is very possible but I don’t doubt that moderators may have wiped those posts as not to cause a panic also the individuals suffering themselves may not have wanted to cause a panic among others going through the same thing who have no course of action than to ride it out. Imagine if there were scores of people saying they were dying on support forums and you thought you had the same thing. Probably just freak others out more for fear that will one day. E them. I can say if you look at the cfs forums there are quite a few people who have died as a result of. If you look at the couple links i posted for cfs forums and click on the memoriam thread you’ll see there’s plenty. I can tell you that if you look up the guy I mentioned queb32 or 23 (the guy I mentioned in a previous post) he started posting in 2011 on various sites and returned in 2017 after a long time off the radar to say that his and his wife’s life have gone pretty much back to normal so to believe your tests if negative.” Sorry if it was lost in my block of text
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Post by mokao123 on Nov 14, 2018 2:10:55 GMT
is there English patient? i notice there isnt any English.
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Post by Kep on Nov 14, 2018 3:26:23 GMT
In the beginning: do you have a link to queb posts? Can’t find it in all your other posts...
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Post by In the beginning on Nov 14, 2018 4:16:14 GMT
This is from one of my posts on the first page of the hiv thread. I added some stuff here. Don’t forget about destin32, red32, queb23 (all the same person feel free to google, he inquired all over) as well as many others who had 100% knowledge of an unprotected hiv exposure. All corresponding symptoms to an hiv infection amongst himself as well as his wife who he inadvertently infected yet both continue to test negative even 7 years later. He had a confirmed unprotected exposure to an hiv infected woman who was not taking medication. www.medhelp.org/posts/HIV-Prevention/test-results-/show/1499761Updated at the bottom of page in July of 2017 There’s a lot of him all over and he used all those different names. He’s on medhelp, pozforums, I think webmd and more I believe. I will also look for another individual on medhelp who interacted with him that had a similar story. I’ll look for the links over the next day n put them up. There’s just a lot he’s put out there. If you google it though n click over the first couple pages of results you’ll see his posts.
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Post by In the beginning on Nov 14, 2018 23:42:38 GMT
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Post by Tired on Nov 15, 2018 6:25:48 GMT
It’s still so weird that he’s the only one we can find that actually gave an update after more than say 5 years or so.
Even with those 59 Chinese patients that were monitored by the govt in 2009, 2011, I cant find any update about a single one even just to say that they had died or anything.
But yeah, regarding the forum members, I swear if I developed a cancer or something in a few years, the first thing I would do is come back here and mention it. Maybe they’re just not wanting to cause a distress to everyone else...
Other than the usual symptoms we all mention here, I haven’t heard of anyone progressing really badly to cancers or life threatening illnesses. Which should happen within 5-10 years if were comparing it to the progression of HIV to AIDS.
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Post by Tired on Nov 15, 2018 6:30:32 GMT
Also thanks for digging up all those posts Inthebeginning!! Appreciate it
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Post by In the beginning on Nov 15, 2018 18:02:10 GMT
No problem. What I’d like to point out is that we are aware there’s a difference between being infected and qualifying as positive. So if we were walking through life believing what the drs tell us then we would not think we were infected because we had not yet tested positive. The 5 to 10 year thing is the life expectancy of somebody who has already tested positive. So technically our “5 to 10 year timer” has not started ticking yet. I’d also like to point out the hypocrisy that some founding drs have expressed in stating that they believe that even in somebody who has been known to have been infected, they believe a healthy immune system can “pass” and overcome the infection. Which would leave people “hiv infected” but not qualify per testing protocols and requirements to constitute “hiv positive”. Here’s the video. An interview with Luc Montagnier youtu.be/tKyIBYKoT20Here is a bit about Montagnier en.wikipedia.org/wiki/Luc_Montagnier“Luc Antoine Montagnier:(born 18 August 1932) is a French virologist and joint recipient with Françoise Barré-Sinoussi and Harald zur Hausen of the 2008 Nobel Prize in Physiology or Medicine for his discovery of the human immunodeficiency virus (HIV).” For the record I would like to acknowledge that I am not an hiv/AIDS denialist. I think the objective of the man interviewing Luc Montagnier and his AIDS denialist film is complete trash and utterly false. I do not think that is up for debate. I however would like to zero in on Luc Montagniers statement in the first 25 seconds of the video clip that I linked. Unfortunately there is no course of action if one is infected but testing negative except to wait for a positive diagnosis to start treatment. One however will not test positive until the host has been chronicly infected and the hosts body has become over run and saturated with viral infection.
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Post by Tsuneyasu on Nov 15, 2018 19:51:38 GMT
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Post by In the beginning on Nov 15, 2018 20:30:15 GMT
Tsuneyasy if you read back to the beginning of this thread I listed several cases that were dismissed as “anecdotal”
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Post by Tired on Nov 16, 2018 2:45:54 GMT
Yes I was more thinking about it from the perspective that this is HIV, just unable to be recognised with current testing standards. So in that sense, we would be following the same trajectory as someone with a new HIV infection, left untreated. Which from most accounts is that you will develop AIDS within 5-10 years of infection.
But we haven’t really heard any anecdotal stories of that happening here. Also medically you would expect a diminishing CD4 count over time. Has anyone here had that measured? I did see the Chinese group recorded a diminishing CD4 count over the years they were assessed. And that guy with the ‘undiagnosed immunosupression’ thread in Phoenix rising documented his steady decline in CD4 over a couple of years.
Yeah the AIDS denialists are pretty crazy. It’s unfortunate that since the 90s anyone who questioned the validity of any science behind HIV was just lumped in with that group so that their points could be dismissed. It’s quite clear that our understanding of HIV is far from complete, yet so many take the current standards of knowledge without any question. E.g. all those online forums who just parrot “a 3 month negative is definitive”. Even the people here previously who weren’t open to any discussion of HIV as the cause. Scientists know that HIV “hides” even when viral load is undetectable in blood after ART, and are trying to figure out where. So I’m not sure how we can be so confident that a negative blood test = definitive.
Here’s where I’ll get a bit weird and I’m literally just guessing so would love someone to prove me wrong. What if the virus has evolved along with ART, so that it just remains in these ‘hidden’ areas and at a very low undetectable level in blood? Is that possible? Would that also prevent an antibody response? Or surely you would still produce antibodies, right? I don’t know
One thing that makes me question whether this is something else, is that our symptoms are all very specific. The China patients are all incredibly similar. Yet with HIV there seems to be a wide range of possible symptoms. We have a list of symptoms, and all seem to follow a similar progression. Whereas HIV information all seems to say that symptoms vary between individuals. Also the anecdotes about transmission from protected sex and even saliva....if it spread that easily how on earth could it be contained to a tiny group of random people in different countries.
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Post by Tired on Nov 16, 2018 3:06:14 GMT
Seriously, if HIV spread so rapidly in developed countries, predominantly through unprotected anal sex and needle use, how would anyone stand a chance against something similar transmitted through oral sex and protected sex? It is not possible that it could remain so rare to a few randoms in a forum.
Perhaps it is more to do with the host response than the pathogen itself, whatever it is. Perhaps most people are not affected by this pathogen, except us lucky ones?
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