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Is it a new disease or its CFS ?

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urraco2012

Messages
55
Teedot said:
urraco2012 where are you from? Keep us posted on this story, you said they didn't announce the cause?
Click to expand...


I'm from Chile. Maybe is just another story without relation with our disease, or maybe is something similar that caused some chronic problems in us, but apparently was some unknown virus and she suffered some of our symptoms, aggravated by the stress and because too many hour flying (this is something new I heard, some doctor said there is a posibility that some virus can attack more agresively or can be reactivated due long plane trips, because some pressing issue) and she was hostilalized because of the pain.
This is the most complete interview that I found, it's in spanish but you can translate (your turn, haha).
http://www.cosas.cl/index.php?optio...ue-podia-morir&catid=331:junio-2011&Itemid=28

Now she is back, dont know if completely recovered
 
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Survivor84

Senior Member
Messages
108
urraco2012 sorry don't have the best resources at the moment thank you. Lol. I sometimes feel like there will never be a resolution to this thing. The only thing I'm banking on is the results of the gene sequencing test eraser went for. I try to piece bits of information together, but I have no idea what to settle on. When Lambert said she was told by Luc montagnier(Co discoverer of HIV) that she had no retroviral activity in her body I don't know if I believe that. I don't if I believe anything a medical person says at this point, believing and trusting in them has only gotten me in a worse situation. A read a story today that went back to 1996
Ugh wow, that is a really long time. I wish we had the equipment to run our own test. I know everyone says its not HIV, but it is damn near its twin. Very hard to detect as well
Can bacterial infections be just as sneaky, like intracellular? I would like to hear at this point what each of us thinks it could be. By the way what happened to a lot of the group, we may not have an answer, but we still have much in common. Don't run away yet people :)
 
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Sherezade

Messages
97
Hi guys, just passing by to say hello. The situation for me is pretty much the same. Just getting ready for my trip to UK to study english. The symptoms are the same. Still on a bunch of supplements to get trough the day. I spend every morning at home and i have 4-5 hours of outside activity during the afternoons. Not exercise though. Sigh.

I have an appointment with an specialist (neuro oftalmologist and intern medicine) on March 21. I have prepared myself to be dismissed by him and sent again to the psychiatrist with the anxiety diagnoses. I will let you know.

I hope you guys are doing ok, specially to Omar with your Valcyte treatment. Good luck! :)
 
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wyomingscared

Messages
16
My friend didn't say if his was from a sexual experience. But I would guess not due to his age but you never know.

As far as my guess of what this diseases is.

Virus first, then probably entero, whomever listed that at the beginning was amazing.

I went to the overall site, then researched more, and it fits almost perfectly, symptoms and transmission.

And to be more specific - I think cocksackie b.

Also - just a quick thank you to teedot for the support a few months ago when I was really worried.

I am still taking - garlic to combat virus, b12 and vitamin e, d and c - and finally a baby aspirin. If this does get to my heart I am hoping the aspirin will help.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Teedot said:
I guess I shall assume that nobody has come across a doctor that believes them? O know I never have.
Click to expand...

I had no issues with doctors disbelieving me for the first year of my illness as they could see I was quite sick (I had a very high fever each time I got struck with bad bouts of this illness over and over), my glands would all swell up. I even had an episode during a crash where my eyes swelled shut to the point where I looked like a bullfrog (a symptom I havent heard of anyone else say.. I wonder if it could be a CMV reactivation thing as I know that can affect unborn babies eyes of CMV mothers).

In my case the doctors as they couldnt work it out, just kept on telling me I had "some kind of virus" and werent even very interested at all to try to find out what the virus was. I ended up diagnosing myself with CFS after a year of this being told so many times that I had "another virus of some kind" (something I was told 7-9?? times in different incidences over a year by that time it was clear to me that i wasnt just catching ordinary viruses or flu over and over but something else very wrong, something with capacity to flare up badly over and over again).

I rarely nowdays get all the viral symptoms with this illness I used to get (eg I now only occassionly get the sore throat and hardly ever now get swollen glands with it), so its harder for doctors to see Im sick. (thou I nowdays get reacting bouts of what dr thinks is herpes on roof of mouth but he wont bother to treat it unless im getting over 6 outbreaks of it per year (last year I had it 3 times).. I think I nowdays have many different things reactiving at times.. obviously something wrong with my immune system..but that's another thing which hasnt been well tested).

Anyway... unfortunately even if doctors believe you, most dont bother or want to help. Our cases are viewed as being too hard. One of the best things we can be doing for ourselves is to support good research and be pushing govs for more research funding.
 
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urraco2012

Messages
55
I broke up with my girlfriend today ... maybe nobody is interested, but for me it is impossible to follow with something I can not tell and staying with someone who requires so much attention and having no energies ... eventually some of us will end up in a psychiatric if we dont see any professional
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
So sorry to hear that Urraco2012. Been through a few breakups since I had this disease and it always hits me hard. Hope you can get some support from friends and family. If not, keep posting here or start a new thread. On this group people do understand how devestating breakups are.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
urraco2012 said:
I broke up with my girlfriend today ... maybe nobody is interested, but for me it is impossible to follow with something I can not tell and staying with someone who requires so much attention and having no energies ... eventually some of us will end up in a psychiatric if we dont see any professional
Click to expand...

Very sorry to hear that. A "good" counsellor (by that I mean one who truely listens) does help when it comes to getting ones head around all the bullshit and issues this illness causes us and yes some of us do end up in psych wards due to not being able to cope with all the issues it brings. Ive been there at times when I was left completely unable to cope with it all.
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Teedot said:
http://www.medhelp.org/posts/Infect...eck-is-going-on-with-me--new-STD/show/1324752

Anybody test for XMRV?
Click to expand...

A lot of us tested for XMRV--it was our big hope (or fear) for a few years. But if you read back a few months, XMRV was proved beyond doubt to be a laboratory contamination so the tests were pretty much of a wash out. (Look at the Lipkin research)

Even the lead researcher who discovered XMRV recognized last year that what they were finding was a laboratory contaminant.

Sushi
 
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Sherezade

Messages
97
Teedot said:
http://www.medhelp.org/posts/Infect...eck-is-going-on-with-me--new-STD/show/1324752

Anybody test for XMRV?
Click to expand...

Hi Teedot. Actually XMRV-linked to CFS Theory is dead. There were many attempts to replicate the 2010 results of Dra Mikovitz study, and they all failed. Last year, Ian lipkin, and many others scientifics including Judy Mikovitz did an study and totally clear out the situation. XMRV is not the cause of CFS, even though, they still admit it could be caused by an external pathogen, but they don´t know what it is, yet.
 
patient.journey

patient.journey

Senior Member
Messages
443
Hey guys my upadte after 3 weeks on Valcyte !!

I can say i feel better 1 more point on the scale of 10 beside less crashes and for that am thankful !!

am not treated or near that but am great full for any good result and i still have long way to go with my treatment trail and am praying wishing my trial will help u all ,,,

I will keep updating u guys as my dose will go down to 900 mg from tomorrow wish i will gt much better so pray fro me guys ,,,
 
Hip

Hip

Senior Member
Messages
17,858
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wyomingscared

Messages
16
Has anyone tried to discuss with the immed.org? They seem like they are interested but offer limited ways to get actual help.

Their symptom list was helpful

My appt was another bust. Apparently I just need to eat better and exercise more. Uggh. Trying not to complain as I seem to be better than most with what ever this is.
 
Hip

Hip

Senior Member
Messages
17,858
wyomingscared said:
Has anyone tried to discuss with the immed.org?
Click to expand...

It's probably worth emailing immed.org, and explaining to Dr Garth Nicolson there that this new Chinese disease exists. At least he will become aware of it. Send him a good symptoms list, plus a list of research studies, such as found on this website: https://sites.google.com/site/newhivaidslikeviruschina/

Dr Garth Nicolson seems to take personal interest in a lot of mysterious illnesses, like Gulf War Syndrome, and neurodegenerative and neurobehavioral diseases in general, so he'll probably find the new Chinese disease very interesting.
 
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Survivor84

Senior Member
Messages
108
Hip how did you find that article? Do you know anything about FIN-Y? Several have tried to reach out to immed.org, no help
 
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