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Post by Tsuneyasu on Jun 1, 2020 13:15:22 GMT
The similarities in symptoms with HIV really suggest it’s a retrovirus. Seen other people’s theories but I really don’t see why it wouldn’t be. www.youtube.com/watch?v=jsGbpaCWEDA. Interesting lecture to watch on how HIV works. It’s basically all the same symptoms and even clinical observations as what’s happening here - except with this unknown illness the CD4 supposedly isnt decreasing over time (from a few accounts?) We need to email virologists for advice. Even just to ask the question - what would you do if you think you had a virus that hasn’t been discovered yet. Watching the speed at which COVID19 was isolated shows it can be done when resources are committed to it. And that there are so many people capable of doing it once they’re given the job. I’m going to start emailing virologists in my area and others, hope you guys can do the same. At least now we can even reference this military university study so they don’t think you’re a lunatic: aammt.tmmu.edu.cn/oa/darticle.aspx?type=view&id=201905187I think it’s also important not to ramble on about symptoms or that you think your dog died from the virus... Just keep it blunt and ask for advice on what’s they would do if they think they had discovered a new virus that is similar to HIV. Hope you’re all doing okay Did you get any answer from virologists John?
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Post by Friend on Jun 8, 2020 21:28:46 GMT
Guys, and ladies, keep posting so the forum stay active Just post anything about your actual symptoms, anything that is working for you even slightly From my side I would suggest that you try high dose vitamin c every 2 hours during symptoms flare I take 3 grs every 2 hrs and that helps a lot in calming down the symptoms. I believe that is related to the fact that vit c binds to toxins so it reduces inflammation Daily magnesium supplement is a must and within a week you can feel the difference I think for some reason we are suffering from low magnesium However vit c and magnesium alone will cause the depletion of other staff So a good multi vitamin daily is needed Stay strong
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Post by Friend on Jun 19, 2020 12:25:50 GMT
My friend had this for 5 years
Muscle spasms Foamy urine White tongue Red dots appearing Facial loss Fats visceral around stomach
In the later years he develop anxiety. Suspect due to Low magnesium
He passed away last week suddenly heart Attack
Explains why old posters disappear suddenly
Wish u all well. Live your life well
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Post by ltsufferer on Jun 21, 2020 16:22:41 GMT
Wow! I was a keen supporter of the old forum and didn't realise it had been resurrected. There was some good stuff on the old forum and I thought we were making progress so I was sad to see it go. A bit of background: been suffering for 26 years now and have tried a number of treatments without much success. I was convinced it was Lyme disease as the symptoms are so similar. Unfortunately I tested negative so it's back to the drawing board for me. It is just so frustrating that something that causes such severe symptoms cannot be identified. I will check all previous posts but it would help greatly if someone could summarise any progress since the original forum. I fear it will be too late to help me but it would be good to think that other lives won't be ruined by this terrible illness.
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Post by Keeponrolling on Jun 21, 2020 20:50:51 GMT
Wow! I was a keen supporter of the old forum and didn't realise it had been resurrected. There was some good stuff on the old forum and I thought we were making progress so I was sad to see it go. A bit of background: been suffering for 26 years now and have tried a number of treatments without much success. I was convinced it was Lyme disease as the symptoms are so similar. Unfortunately I tested negative so it's back to the drawing board for me. It is just so frustrating that something that causes such severe symptoms cannot be identified. I will check all previous posts but it would help greatly if someone could summarise any progress since the original forum. I fear it will be too late to help me but it would be good to think that other lives won't be ruined by this terrible illness. It isnt quite resurrected.. It is just some ppl from the old board posting once in a while. Some are taking on discord I believe. But nobody is gotten any wiser... Just a reliëf forum. But good to see some old posters here.
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Post by ltsufferer on Jun 22, 2020 8:47:30 GMT
Wow! I was a keen supporter of the old forum and didn't realise it had been resurrected. There was some good stuff on the old forum and I thought we were making progress so I was sad to see it go. A bit of background: been suffering for 26 years now and have tried a number of treatments without much success. I was convinced it was Lyme disease as the symptoms are so similar. Unfortunately I tested negative so it's back to the drawing board for me. It is just so frustrating that something that causes such severe symptoms cannot be identified. I will check all previous posts but it would help greatly if someone could summarise any progress since the original forum. I fear it will be too late to help me but it would be good to think that other lives won't be ruined by this terrible illness. It isnt quite resurrected.. It is just some ppl from the old board posting once in a while. Some are taking on discord I believe. But nobody is gotten any wiser... Just a reliëf forum. But good to see some old posters here.
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Post by ltsufferer on Jun 22, 2020 8:52:28 GMT
Thanks for the response, Keeponrolling. The old forum had some good technical and scientific research which I haven't found on the new forum - although I have found some pretty weird stuff. I still cannot get my head around how such a debilitating and, it would seem, fairly common illness cannot be identified. Over the years I have had every blood test known to man but nothing has come up. Hey ho. Good to know I am not on my own.
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Post by Friend on Jun 22, 2020 17:19:14 GMT
Wow! I was a keen supporter of the old forum and didn't realise it had been resurrected. There was some good stuff on the old forum and I thought we were making progress so I was sad to see it go. A bit of background: been suffering for 26 years now and have tried a number of treatments without much success. I was convinced it was Lyme disease as the symptoms are so similar. Unfortunately I tested negative so it's back to the drawing board for me. It is just so frustrating that something that causes such severe symptoms cannot be identified. I will check all previous posts but it would help greatly if someone could summarise any progress since the original forum. I fear it will be too late to help me but it would be good to think that other lives won't be ruined by this terrible illness. Hi itsufferer, I was also on the previous forum As you can see nothing much new New sufferers are added everyday, they start by getting worried about hiv for a couple of years before getting convinced that it is something else No real progress, people spend time worrying instead looking for solutions and trying thing A question for you, have you ever been tested for brucellosis?
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Post by ltsufferer on Jun 24, 2020 11:03:56 GMT
Hi itsufferer, I was also on the previous forum
As you can see nothing much new
New sufferers are added everyday, they start by getting worried about hiv for a couple of years before getting convinced that it is something else No real progress, people spend time worrying instead looking for solutions and trying thing
A question for you, have you ever been tested for brucellosis?
No - I just recently had a IgM and IgG test for Lyme which came back negative. I was absolutely convinced this disease was Lyme so I was surprised at the result. The odd thing about this disease is that the symptoms are so awful but the blood tests seem relatively normal and no pathogen can be found.
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Post by Friend on Jun 24, 2020 15:14:45 GMT
Hi itsufferer, I was also on the previous forum As you can see nothing much new New sufferers are added everyday, they start by getting worried about hiv for a couple of years before getting convinced that it is something else No real progress, people spend time worrying instead looking for solutions and trying thing A question for you, have you ever been tested for brucellosis? No - I just recently had a IgM and IgG test for Lyme which came back negative. I was absolutely convinced this disease was Lyme so I was surprised at the result. The odd thing about this disease is that the symptoms are so awful but the blood tests seem relatively normal and no pathogen can be found. I also considered lyme for some time even though I didn't get tested for it In fact I think that borrelia doesn't fit the bill in terms of contagiousness However I'm almost convinced that we are dealing with something similar. I remember discussing my case with one of the top of the infectious disease specialists and he was quite confident when he said that viruses don't behave that way but some of the bacteria do. Many of the sufferers make no difference between the viral syndrome caused by viruses such as EBV (mono), flu, HIV... which is limited in time and our syndrome which represents lingering and variable symptoms Our case is probably a disseminated bacterial infection. There are few bacteria that can case similar syndrome to ours: borrelia, babesia, bartonella, brucellosis, mycobacterium... I spent a lot of time checking their related symptoms and caracteristics trying to figure out which one can be our culprit The result of my research was that bartonella is fitting the best. It is said that burning soles is a the finger print of Bartonella. Add to that blood vessel inflamation, spleen enlargement and liver elevated enzymes... Also bartonella can infect humans and pets same as our pathogen (reported by many sufferers) However no where it is said that Bartonella is as contagious our pathogen even though there some case reports ( jcm.asm.org/content/53/5/1556) So may be it is a new strain as scientists keep discovering new strains of bartonella all the time. An other possibility is Candida auris. This one is extremely contagious. Infected people shed Candida auris in their skin. That makes me remember the guy who get infected just by having regular massage. Personally, some of family members got infected just by regular contacts. However there is absolutely no studies about the symptoms caused by Candida auris in immunocompetent people. We only know that it is a nightmare for heath care personnel as its extremely contagious, resistant to the available drugs and resistant even to the disinfectants I think if some of us can have access to the right tests that would help to narrow our research.
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Post by Guest 3 on Jun 24, 2020 15:48:55 GMT
After 8 years of crazy amounts of research and speaking to literally hundreds of patients and experts I also believe this is a form of bartonella or a BLO (bartonella like organism). Why?
1. Chinese guys research claims haemobartonella as backed up by labs in Wuhah that now refuse to run tests 2. Scratch marks arent caused by any other pathogens as far as I can tell. Many of us have these strange marks. In fact I'm currently undergoing intense herbal protocol and came out in these huge blistered scratches on my legs. Crazy. 3. This thing responds to antibiotics, 100% including many focused on lyme like diseases 4. We have low CD57. CRP and all other markers of inflammation normally present with chronic viral infections are missing. 5. I tested positive for bartonella during alternative (bioresonsance) when I got ill. All other tests negative. 6. It is known to infect epithelial cells 7. We all test positive for chlamydia via the scrape test (though not urine or blood). What organism cross reacts with chlamydia? Bartonella.
There are over 30 species of bartonella though it isnt thought to be so contagious as mentioned. That's why BLO or haemobartonella could be the culprit.
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Post by ltsufferer on Jun 25, 2020 10:18:02 GMT
Friend and Guest 3 - it is encouraging to see that someone has been doing research - thanks to you both.
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Post by georgina on Jun 25, 2020 13:30:34 GMT
With a few other patients over the last year or so we have collected what I think is close to the most complete list of symptoms of this thing to date. It is based on the list from old forum and can now be found here. Please add whatever you think was missed in there.
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Post by Friend on Jun 25, 2020 15:44:51 GMT
After 8 years of crazy amounts of research and speaking to literally hundreds of patients and experts I also believe this is a form of bartonella or a BLO (bartonella like organism). Why? 1. Chinese guys research claims haemobartonella as backed up by labs in Wuhah that now refuse to run tests 2. Scratch marks arent caused by any other pathogens as far as I can tell. Many of us have these strange marks. In fact I'm currently undergoing intense herbal protocol and came out in these huge blistered scratches on my legs. Crazy. 3. This thing responds to antibiotics, 100% including many focused on lyme like diseases 4. We have low CD57. CRP and all other markers of inflammation normally present with chronic viral infections are missing. 5. I tested positive for bartonella during alternative (bioresonsance) when I got ill. All other tests negative. 6. It is known to infect epithelial cells 7. We all test positive for chlamydia via the scrape test (though not urine or blood). What organism cross reacts with chlamydia? Bartonella. There are over 30 species of bartonella though it isnt thought to be so contagious as mentioned. That's why BLO or haemobartonella could be the culprit. Hi Guest 3 I believe that I know you from the old forum as I remember who did the bioresonance test How are you doing? did any thing work for you? even slightly? Please share some updates
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