• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is it a new disease or its CFS ?

Messages
55
I found this webpage https://sites.google.com/site/newhivaidslikeviruschina/home, not seems very pro, but its something. I guess most of u have read some pages like this, but I only want to ask, If this is so clear and affecting so many people, why this is not in the media? If you search something about it you can find just some articules from 2012, 2011, explaining that this is something rare, genetic and not infective desease. Why so many lies about it? Really the govs are trying to hide this? (Im not talking just about chinese gov, we all know eeuu have a lot of experience hiding real intentions in everything to the people). We really have to do something to put this on the paper...
 
Messages
80
I found this webpage https://sites.google.com/site/newhivaidslikeviruschina/home, not seems very pro, but its something. I guess most of u have read some pages like this, but I only want to ask, If this is so clear and affecting so many people, why this is not in the media? If you search something about it you can find just some articules from 2012, 2011, explaining that this is something rare, genetic and not infective desease. Why so many lies about it? Really the govs are trying to hide this? (Im not talking just about chinese gov, we all know eeuu have a lot of experience hiding real intentions in everything to the people). We really have to do something to put this on the paper...

Simply because its common people that have been infected, not the powerful government officials or scientists. Common people are just numbers for gov, and a liability when common people are no longer productive and infected
 
Messages
55
Simply because its common people that have been infected, not the powerful government officials or scientists. Common people are just numbers for gov, and a liability when common people are no longer productive and infected

I dont know how reliable is this page, but curiously is exactly the same symptoms that I had, even the thyroid enlargement! is incredible how identical is this information! Apparently symptoms tend to decrease and others remain indefinitely? The scaring issue is the organ damage, symptoms can be horrible and a nightmare, but supposedly have to decrease with time, but organs doesnt recover with the time... ufff, cant understand that even at this times is possible to hide something so big
 
Messages
2
Hi - new here.

Been experiencing multitude of symptoms for 4 months. Tested conclusively negative for HIV/HTLV. I'm 29 yr old male. Had low risk encounter with a woman. One night stand. Unprotected oral both ways. Thought for sure it was HIV then HTLV despite low risk. First symptom was UTI like. UTI resolved within 2 weeks of exposure, but as soon as UTI cleared up tons of new things began. Many symptoms have resolved like nausea (lasted 2 weeks), fatigue (lasted 2 months), tingling limbs (2 weeks), rectal mucous discharge (1 week), and severe nightsweats (2 months). Other symptoms remain: white coating on tongue, red pin pricks dots on palm, non itchy red knuckles, weird skin imprints (that take extra time to disappear), receding gums, and most recently a swollen tongue. Has anyone here noticed a swollen tongue? If i stick my tongue out there are noticeable teeth marks around the edges and it looks swollen (it was never like this before - and i know because i'd been watching the white tongue so closely). My CBC is all within "normal" range. Also i never ran a fever, in fact my body temp has constantly been on the low side - like 97 faranheit. Infectious disease doc is stumped. Looking for support.

I have not seen much written in this forum about 1)red pin prick dots, 2)rectal mucous, and 3)swollen tongue. Have any of you had those symptoms too, or just me?

Despite these pesky, lingering symptoms, my body feels close to normal again. Very strange. Thanks for all your contributions here. It's been nice to read.
 

Survivor84

Senior Member
Messages
108
Thank you realconcern for joining the forum. If you can please get anybody else that would be great, we are better in numbers. Your story is all to familiar to us and the symptoms. Any information you can provide would be appreciated.
 

patient.journey

Senior Member
Messages
443
Hi - new here.

Been experiencing multitude of symptoms for 4 months. Tested conclusively negative for HIV/HTLV. I'm 29 yr old male. Had low risk encounter with a woman. One night stand. Unprotected oral both ways. Thought for sure it was HIV then HTLV despite low risk. First symptom was UTI like. UTI resolved within 2 weeks of exposure, but as soon as UTI cleared up tons of new things began. Many symptoms have resolved like nausea (lasted 2 weeks), fatigue (lasted 2 months), tingling limbs (2 weeks), rectal mucous discharge (1 week), and severe nightsweats (2 months). Other symptoms remain: white coating on tongue, red pin pricks dots on palm, non itchy red knuckles, weird skin imprints (that take extra time to disappear), receding gums, and most recently a swollen tongue. Has anyone here noticed a swollen tongue? If i stick my tongue out there are noticeable teeth marks around the edges and it looks swollen (it was never like this before - and i know because i'd been watching the white tongue so closely). My CBC is all within "normal" range. Also i never ran a fever, in fact my body temp has constantly been on the low side - like 97 faranheit. Infectious disease doc is stumped. Looking for support.

I have not seen much written in this forum about 1)red pin prick dots, 2)rectal mucous, and 3)swollen tongue. Have any of you had those symptoms too, or just me?

Despite these pesky, lingering symptoms, my body feels close to normal again. Very strange. Thanks for all your contributions here. It's been nice to read.

I had a UTI symptoms in the beginning of my symptoms , its much better than but is till have some !
 
Messages
80
Tried what ?!?!'

Omar did you or anyone try to contact the following virology centers? Since this is unknown virus, we should focus on virologist not standard doctors, this is above their knowledge

Center for Virology at Mount Sinai School of Medicine
Madison Avenue
New York, NY 10029

College of Veterinary Medicine & Biological Sciences
105 Infectious Disease Annex
Colorado State University
Fort Collins, CO 80523

Gladstone Institute of Virology & Immunology
1650 Owens Street
San Francisco, CA 94158

Institute of Human Virology
725 West Lombard Street
Baltimore, MD 21201

Johns Hopkins Bloomberg School of Public Health
615 North Wolfe Street
Baltimore, MD 21205

University of Maryland
22 S. Greene Street
Baltimore, MD 21201

The Scripps Research Institute
10550 N. Torrey Pines Road
La Jolla, CA 92037

U.S. Army Medical Research and Materiel Command
504 Scott Street
Fort Detrick, MD 21702

U.S. Army Medical Research Institute of Infectious Diseases
1425 Porter Street
Frederick, MD 21702

University of Michigan
Medical Sciences Research Bldg. III
1150 West Medical Center Drive
Ann Arbor, MI 48109

UTMB - Galveston National Laboratory
301 University Boulevard
Galveston, TX 77555

Walter Reed Army Institute of Research
503 Robert Grant Avenue
Silver Spring, MD 20910
 
Messages
76
Location
India / singapore
now I am well. I infected this virus through eating. In acute phase, I tested the blood. The lymphocytes count is not low. I don't know the level of CD4 count. I think this virus is different from the HIV.


Do you know anyone from china with this virus, did a CD4 count ??
And did anyone after many years got any serious alignments like autoimmune diseases /thyroid problem/joint problems ??


U mentioned EBV, even I feel its a new type of herpes group virus ,yet to be discovered....only a virologist can confirm that....and its effect on CD4 CELLS .
 

Survivor84

Senior Member
Messages
108
Ok I really need the help of the group and an honest opinion on wether or not going to the media is a good idea. It seems as though this issue has gone on long enough unrecognized. Im sure that there were other people at some point that faught hard with doctors and what not. But has anyone gone to the media to be heard? There are people that have been dealing with this for years beyond us. Its surprising its gone on this long. If anyone has forum references with stories available from people all other, please send them to me.Any imput appreciated
 
Messages
76
Location
India / singapore
ehealthforum.com/health/certain-hiv-positive-but-negative-tests-t229803.html#axzz2KQOwubnD

Here is a thread from another forum . Check so many people struggling like us .
 

Survivor84

Senior Member
Messages
108
We all need to post our story on www.hivlikevirus.com and tell other people from other forums to do the same as well, so our stories will be compiled as one. Sherezade what do you think? I'd rather know about my future then worry about what ifs and unknowns.