Is it a new disease or its CFS ?

[patient.journey]

Hi Omar,
I defenitly think that they inmune system is better than yours, I think all of us already had a more vulnerable inmune system at the moment of the infection, thats why we get sick worse. At least thats my theory, because we are exposed to many infections during sexual contact and probably we always catch known and unknown infections and we get sick if our inmune is poor.
How are your levels of white blood cells and platelets?
Cause mine are low and that is worrying me lately.

I read on the net quite old cases similar to ours, have you followed some to see how they are now? apparently end well, that's good if it were the same

We cant say that our immune system is bad that much as i knw i was always good and barely get a flue during a year beside if we though how many viruses could one exposure that is less than half an hour give to you by a casual contact and you didnt half them before it would be a few number !

How much low is your white blood cells ?

Yes some stories seems to have good ending and i hope we will be of them

 

[patient.journey]

Do you guys realize that if in fact this pathogen is transmitted by saliva is just a matter of time that the whole world gets infected? I don`t mean to be an alarmist, but we are talking of a huge sanitary crisis worldwide.
I've infected many many people - just by hugging them. Now I don`t even think of kissing someone, or let anyone to drink from my glass. There is something going on and the only thing we've got from doctors, scientifics and governments is denial, negligence, and offenses. What could we do?

It might be transmitted by saliva but i cant be sure as a good number of people are healthy after sharing my stuff or been kissed by me !

As sushi and Tania says when i came here i start reading about CFS out breaks that am sure there were mostly viruses with some bacterial infections behind them and i thought that what happened in China is one of those cases, those cases never became world wide or an epidemic and dont ask me how it might be genetic or the pathogen might be working with some factors of specific people immune system or it might become more recognized and more people will got infected and we would have an answer faster,,,

Am sure that what i have is a virus and i believe its the Chinese virus that have been found in same people in 2009 and they wrote in the newspaper it have a similar sequencing to HIV (not the first time doctors find a similar sequencing virus to HIV or HTLV viruses ) but its not the same virus before they shout down the research in a weird way and dismissed every thing as the same of what was happening in the other CFS/ME out breaks !!!

Try to find a good CFS doctor that he will test you for every thing he would think about and might do more searching trying to find something new and we could help you with that but we should know were are you living ?! even if the reason wasnt found soon you can get some treatments that would make you better hopefully !

Best wishes

 

[Hip]

In terms of who gets ME/CFS and who does not, from catching the same virus: factors such as having IBS (irritable bowel syndrome) or SIBO (small bowel bacterial overgrowth) before you caught the virus may play a part. Many people that developed ME/CFS from a viral infection will tell you that they already had IBS or SIBO.

Thus a combination of virus plus a bacterial infection in the gut may be required in order to get ME/CFS, with these multiple pathogens working in tandem to cause the disease.

References: Irritable bowel syndrome (IBS) is a very common comorbid condition in ME/CFS and fibromyalgia.12 One study found 92% of ME/CFS patients, and 77% of fibromyalgia patients had IBS in their lifetime (compared to 18% for healthy controls). 1 SIBO is also a common comorbid condition in ME/CFS and fibromyalgia. 1

 

[urraco2012]

We cant say that our immune system is bad that much as i knw i was always good and barely get a flue during a year beside if we though how many viruses could one exposure that is less than half an hour give to you by a casual contact and you didnt half them before it would be a few number !

How much low is your white blood cells ?

Yes some stories seems to have good ending and i hope we will be of them

WBC = 4.100 mcL
Plateles = 120 mcL
Docs say its low, but not much. But after suffering all what I did... I dont know what to think..
Do you have or had ear pain and heat in your ears? Thats killing me now and dont know how to fight it, I feel I'm going deaf!

 

[collegeusername]

hivlikevirus, can you give me editing ability on your site? (if that's possible w.o knowing code), just want to simplify it a bit and delete repetitive things, add a few things.

also have you tested hsv1 yet?? honestly, look at the symptoms, im not crazy here. looked at your blood results from earlier and i never saw it tested for.

i have the same experiences spreading this virus. im a college student and im in close contact with people all the time (now im just at home, but many people visit). i know for a fact i have spread it to numerous people and i have been tracking it, and i know they have spread it to others. it can be 24-72 hours, includes flu-like symptoms, fatigue and swollen, dry lips. within a week one or both eyes are reddened by netting veins, they may have a rash, numbness, sore body, and deepened fatigue. at first i thought it might be occasionally passed by saliva, but now i am convinced it is often spread by saliva, such that one contact experience is sufficient to infect someone

 

[taniaaust1]

WBC = 4.100 mcL
Plateles = 120 mcL
Docs say its low, but not much. But after suffering all what I did... I dont know what to think..
Do you have or had ear pain and heat in your ears? Thats killing me now and dont know how to fight it, I feel I'm going deaf!

I have some reactiving viral thing whenever I get run down (eg do too much over days) in which sometimes I get ear pain with. This reactivating virus thing.. also gives me a cough which is triggered off via drafts and the cooler night air. The cough goes croupy sounding at times.

 

[patient.journey]

I have an ear pain when my symptoms and situation get worse

I tested negative to HSV1&2

 

[Survivor84]

I know someone that has had herpes for years but test negative

 

[patient.journey]

I know someone that has had herpes for years but test negative

How does he/she knw that he got herpes then and which type is it and where they he got it "genital or oral" ?

 

[Survivor84]

They have outbreaks in genital and nose and acyclovir clears it up. For year's

 

[Survivor84]

Does anybody think that if you got this thing sexually and not casually that it is still the same thing? Anything that lowers the immune system will generally produce the same symptoms. There should be a few things different if it is two seperate things

 

[collegeusername]

if this is in fact HSV, it makes a lot of sense that some of us very readily transmit it via saliva while some of us apparently only transmit it sexually. after extensive research, i've concluded both are transmitted via saliva, but hsv-2 is quite difficult to pass on orally and has less of a chance to cause oral ulcers (as little as 1% in some studies), while hsv-1 is just as readily passed orally and genitally, but has a tendency to only cause rashes/itching/discomfort where hsv-2 will more likely cause genital ulcers.

Omar, you said you were positive for EBV and CMV earlier? any other news on that?

And with Teedot's claim that a person has herpes but tests negative, that is now 3 confirmed cases of this i have witnessed (myself, and dmg on medhelp whom i contact via phone)

 

[Survivor84]

Do you believe collegeuser tht it can pass regardless of an outbreak present? Do you have any problems with candida albicans?

 

[collegeusername]

never had yeast problems, but i had the white tongue for a few months.

just like hivlikevirus has spread it without any physical symptoms, i have too. i still have a constant sore throat but it's pretty mild at this point. my lips are now picture perfect, no cracks or dryness, and only a tiny cut or two deep inside cheeks at some times (almost like i'd been poked with a needle, not at all ulcer-like).

as soon as my gf tested positive hsv-1 i stopped sharing for at least 2 months. then after reading up on transmission, posting on forums and talking to several doctors, i decided it was paranoid behavior b.c i have no true symptoms, and since i tested negative my doctors said it probably hadnt been transmitted by my gf (altho eventually i concluded i had it first). unfortunately, i had already shared pipes with 2 friends who got all the symptoms (still no "diagnostic symptoms"). they passed it on to our other friends. after 2 months and no symptoms i shared a pipe with unrelated friends with EXTREME caution to make sure my lips were dabbed dry and no saliva got on the pipe AND 9 out of 10 times i put a blue flame to the mouthpiece for 5+seconds to dry out any saliva. within days each and every person present for that smoke appeared with symptoms, and then passed it on to their friends.

 

[hivlikevirus]

hivlikevirus, can you give me editing ability on your site? (if that's possible w.o knowing code), just want to simplify it a bit and delete repetitive things, add a few things.

also have you tested hsv1 yet?? honestly, look at the symptoms, im not crazy here. looked at your blood results from earlier and i never saw it tested for.

Absolutely man. Really haven't bothered with the site too much since I first set it up but if it helps even one person find their way to these forums then it's definitely worth the money.

Would love someone to help so I'll try and set up / e-mail you some admin login details within the next 48 hours or so. (Would do it now but it's pretty late and have to be up tomorrow to take my girlfriend to the doctor - getting a whole heap of blood test results back that were taken last week. Will be straight back here with the results!)

As for my results: no, was / have never been tested for HSV 1 or 2. I know my ex of a few years back had a (genital) HSV-1 outbreak at one point but she was - and had been - on Valtrex for years before we met (and I never once had any visible outbreaks of any kind whatsoever). If/when I next get a blood test I'll be sure to check for it though. Not sure if it'll be on the results my girlfriend gets tomorrow (wasn't there at the last appointment) but hopefully (and negative, of course)!

Currently up late - before aforementioned appointment tomorrow - reading up on HPV.

Girlfriend has/or has had every single one of these symptoms over the past few months:

http://www.medhelp.org/cancer/slideshows/15-Cancer-Symptoms-Women-Ignore/399/1

http://www.medhelp.org/cervical-cancer/slideshows/Cervical-Cancer-What-Every-Woman-Should-Know/642/1

Could it all be HPV-related(?)

 

[collegeusername]

its important to note that they are listing the symptoms that may be indicative of various cancers, from skin to liver to cervical to breast cancer. i dont think they're saying each and every one of these symptoms would manifest if you had, say, cervical cancer caused by hpv.

definitely go get tested hsv. Omar is i think the only person i've talked to that has this chronically and has, in fact, tested hsv1 and 2 and tested negative (aside from the false negatives). its worth a shot.

looking forward to the results!

 

[collegeusername]

check this one out:

http://www.natap.org/2012/ICAAC/ICAAC_52.htm

 

[Survivor84]

With this link, do feel this has any relation to HIV in our current situation? If in fact people were infected by saliva, does that mean there may be another virus aside from have 1 /2? I think ya get what I'm saying, correct me if I'm wrong.

 

[urraco2012]

I get positive test for HSV-2, but just a bit over the range, so I have to re-check. But I cant find information about herpes or papiloma causing our symptoms. I believe my infection was sexually and dont know how this crosses the condom, dont have other explanation, may be some unknown virus, hopefully inofensive, but probably the same that cause CFS/ME, Sjorgen, etc.

 

[taniaaust1]

here's some of photos of me which may interest those here. Here is photo of one of the bumps I got on my tongue when I over did things.. this is a photo from last week (this was triggered off by moving house).

Below is a photo of what is possibly herpes (people and doctor thought that by looking at my photo of it) I get on roof of my mouth (also happens when I over do things and get run down a bit). My CFS specialist wont treat this unless I have more then 6 outbreaks in a year (last year I had 2-3 outbreaks of this). I cant find a doctor willing to put me on antivirals for this stuff.

Note.. others get sick from my saliva (flu like symptoms or develop ME/CFS) even when I dont have any signs like these.