Discussion in 'Immunological' started by Omar88, Aug 26, 2012.
No cause i dont live there but am trying my best with big hospitals here ,,,
I read such cases and its hurts that no body cares, i think we are a lone until we do something together and my idea is getting big number so we can share some money and pick 3 of us or more if the number get bigger and see a doctor who would care
Hoping and praying that 8eraser8 will have a good shot with the virologist in 3 weeks. Lets see if we can find a virologist willing to help all of us. What other options are there, look how far back some of those stories go.
Omar, we need to keep the momentum going, people tend to get discouraged quickly with this stuff and see dark thoughts all the time, when I think about this, I have so many negative thoughts, ideally we can find a virologist, and we group funds and finance his research, WE PAY HIM
Thanks Teedot, I really hope I get an outcome from my meeting with the virologist, I will also meet a top infectious disease dr. There are not many options unfortunately Teedot, we need to take our destiny in our hands. If we do not, who else will. we cannot expect others to do the job for us!
Ron thanks for the links. I suggest we create a google groups page, a facebook page, a tweeter account and what ever social media group which can help us group together so we can have a voice.
Omar thanks for the links. I suggest we create a google groups page, a facebook page, a tweeter account and what ever social media group which can help us group together so we can have a voice.
Should we continue to label it HIV like virus. I think when ppl see that they want to read more
Hiv Like Virus is good you are right, this draws attention, a facebook page, tweeter, etc... account would be great to bring all of us together......
There are many more such links of ther forums, where people are struggling with this disease/syndrome.
We are not alone, only thing we have to come together .
Here is another guy ....having symptoms ,also with low CD4 .
But, doctors think ......its all in his head.
Go to hiv like virus on fb and like, and or try and get these people ron to go and look at the page,it is still a work in progress
i will copy and paste the stories if they inbox me, so that they can remain private
Some days ago i did the autoinmunity tests that my infectologist ordered... I'll get the results in one week and a half. I'm very scared of the results, but at this point i wish that anything that is wrong with me just shows out in the tests in order to get the proper treatment. I'll let you know the results.
Good Luck Sherezade
www.change.org/petitions/hiv-negative-aids-2 members check this out.
http://www.cfsstraighttalk.blogspot.com/ I know some on you have heard of her before. Check this page out. I believe our condition is known about,it is being denied, most likely for many reasons. I am not saying its hiv
I talked to this woman she got her theories that i didnt believe in all of it but she lost and trying to figure out why so we cant blame her !
Omar,she makes great points, she is on the right path. Maybe you dont believe in them all. But she is really not in a much different situation then us. She suggested that we write to the government http://www.whitehouse.gov/contact/
http://www.senate.gov/general/contact_information/senators_cfm.cfm, look anything can help and at least we can say we tried. We shall continue to research through doctors and virologist, but maybe writing,emailing etc. to organizations and what not will help as well.
Our case is different from normal CFS patients ....we don't have such severity, people even after 14yrs don't have cfs ,in case of this hiv like virus, but they have some constant muscle twitching etc . And its some what contagious
You can also try a Google Site Search
Separate names with a comma.