Is it a new disease or its CFS ?

[patient.journey]

Very interesting, Omar. How did you get in contact with these Chinese researchers? And which institutions do they work in? China CDC? Pasteur Institute of Shanghai

Am spending 3-4 hours on the internet trying to find stuff, am using Google translate sometimes to read Chinese language and there i found doctors names and i was able to find there web site in English and they replayed to me twice. they are in Pasteur Institute of Shanghai.

I can only think of two possible reasons why the Chinese researchers have not found the pathogen that causes the Chinese "HIV-like" disease

What doctors said that they think its an known infection, maybe it became more aggressive.

It might be bacterial and became super bug and might be new strain of viral infections "this is my opinion"

The other thing that i confusing me that as they are saying some of tissue or blood sample "am not sure" were send to UCSF in USA and i sent an email to the lab chief Dr. Charles Chiu and he confirmed the information and in the same time he wrote that there is no time frame for this research and if there are any new information they will update the web site and they stopped replaying !

What i read about this lab that its a big new lab with huge technology like deep sequencing but did they use it and were the samples blood or tissue and did the time or storage ruined those samples !! i cant understand this how nothing was found !!

Omar: Why don't you ask these researchers in China if they have tested for all 6 types of coxsackievirus B (CVB1 to CBV6) in the patients with the Chinese "HIV-like" disease

Were you tested for it and you got a positive result ?
They are not replaying now but i will mention this to them at least they could read it !

Adults generally have many of these Herpesviridae (herpes family viruses) in their bodies already, from catching these viruses in earlier life. In healthy adults, the immune system keeps these Herpesviridae in control and inactive. But if you catch another infection that weakens you immune system, these Herpesviridae can become active again. This is nothing unusua

I know that and i replayed with the same information to them.

I looked very closely at the symptoms of the Chinese "HIV-like" disease, and compared them to the symptoms normally found in ME/CFS. Although there are lots of similarities, there are several symptoms that commonly appear in the Chinese "HIV-like" disease that do not normally appear in ME/CFS. These symptoms are

That why i called CFS/ME a big umbrella cause under it there are so many cases that are not the same

 

[ravikumarsu]

Omar,

I really appreciate your efforts. I suspect this is mycoplasma (related to gulf war syndrome) . Because, it is giving chronic and continuous attacks. Please share you opinions

 

[patient.journey]

Omar,

I really appreciate your efforts. I suspect this is mycoplasma (related to gulf war syndrome) . Because, it is giving chronic and continuous attacks. Please share you opinions

I mentioned that but i didn't get a replay !
Hope i will get one soon

 

[merylg]

Hi Omar,
Behcet's Disease has interesting parallels with some issues of ME/CFS. It has a genetic susceptibility that follows populations along the Old Silk Road between Europe & China. They are still researching the cause of this disease but it manifests as an autoimmune vasculitis, thought to be due to a hypersensitivity to Streptococcus.

http://en.wikipedia.org/wiki/Behçet's_disease

http://www.ncbi.nlm.nih.gov/pubmed/18693149

23andMe test 3 genetic snps that relate to susceptibility to Behcet's Disease: rs3024490, rs1800871 and rs1495965

 

[patient.journey]

Hi Omar,
Behcet's Disease has interesting parallels with some issues of ME/CFS. It has a genetic susceptibility that follows populations along the Old Silk Road between Europe & China. They are still researching the cause of this disease but it manifests as an autoimmune vasculitis, thought to be due to a hypersensitivity to Streptococcus...

Every possibility will be taken ,, Thanks Meryl

 

[Hip]

Were you tested for it and you got a positive result ?

Not yet, but I will at some point. Though its a little complicated, because first you have to find a gastroenterologist who is able to take a small sample of your pyloric antrum (a part of your stomach), which involves putting an endoscope down your throat, and then send this sample to Chia's lab for analysis. Chia's lab can detect a wide range of enteroviruses in this sample. Chia charges $250 for this, plus you have to pay the gastroenterologist fee.

 

[Hip]

FINDING A CANDIDATE VIRUS FOR THE CHINESE "HIV-LIKE" PATHOGEN

A good starting point when looking for a possible candidate for the identity of the Chinese "HIV-like" pathogen is the incubation period.

The incubation period is the time between catching an infectious pathogen and the arrival of its first symptoms.

Every pathogen has a characteristic incubation period. For example, the incubation period of Epstein-Barr virus is around 4 to 7 weeks. This means that when you get the first symptoms of EBV, the time you caught this pathogen will have been between 4 to 7 weeks earlier.

Now, I have communicated with several people from China, and they tell me that the incubation period of the Chinese "HIV-like" virus is around 2 to 3 days.

A common way to pick up this virus in China, apparently, is visiting a prostitute. These people then find that their sore throat symptoms first appear 2 to 3 days later. They likely caught the virus just through kissing (after all, the Chinese "HIV-like" virus is a respiratory virus); then it takes 2 to 3 days for the first symptoms to arise after that fateful kiss.

So, since we actually know the incubation period of the Chinese "HIV-like" virus with good accuracy, this means we know a lot about this Chinese virus, simply because we can immediately rule out any other pathogens that have completely different incubation periods.

So on the incubation-period alone, we can say with complete confidence that the Chinese "HIV-like" virus is certainly NOT Epstein-Barr virus, because Epstein-Barr can NEVER incubate in just 2 or 3 days, it always takes at least 4 weeks.

And to answer ravikumarsu's question about mycoplasma: the incubation period of mycoplasma does vary a lot, but it is usually at least a week. So again, mycoplasma as a candidate for the identity of the Chinese "HIV-like" pathogen does not fit, and we can rule it out.

 

[taniaaust1]

They likely caught the virus just through kissing (after all, the Chinese "HIV-like" virus is a respiratory virus); then it takes 2 to 3 days for the first symptoms to arise after that fateful kiss.

Wow..that's fast. Im finding that very interesting as whatever I used to infect a boyfriend with when I was kissing him would present in that time or maybe even the next day.. he'd fight it off but then I'd reinfect him again not long after.. by kissing again (Im trying to remember exactly if it was 1 or 2 days, it was fast too). We ended up having to have a non kissing relationship as after this had happened a few times to him.. he didnt want to kiss me anymore (obviously his body could fight it off with him only being sick for a few days with viral symptoms... but the fact I reinfected him several times is interesting.... maybe his body wasnt making antibodies properly to whatever I carry).

I dont thou match what I think the defining symptoms for the china thing are eg winkly hands and some of their other things. (I fit with what Dr Bells and Dr Cheney's patients tend to experience)

 

[patient.journey]

Not yet, but I will at some point. Though its a little complicated, because first you have to find a gastroenterologist who is able to take a small sample of your pyloric antrum (a part of your stomach), which involves putting an endoscope down your throat, and then send this sample to Chia's lab for analysis. Chia's lab can detect a wide range of enteroviruses in this sample. Chia charges $250 for this, plus you have to pay the gastroenterologist fee.

I will be waiting for your results and i will go for the same tests if you are positive and i will send it to the researchers in china after that so they can put an eye on it.

 

[patient.journey]

Wow..that's fast. Im finding that very interesting as whatever I used to infect a boyfriend with when I was kissing him would present in that time or maybe even the next day.. he'd fight it off but then I'd reinfect him again not long after.. by kissing again (Im trying to remember exactly if it was 1 or 2 days, it was fast too). We ended up having to have a non kissing relationship as after this had happened a few times to him.. he didnt want to kiss me anymore (obviously his body could fight it off with him only being sick for a few days with viral symptoms... but the fact I reinfected him several times is interesting.... maybe his body wasnt making antibodies properly to whatever I carry).

I don't thou match what I think the defining symptoms for the china thing are eg winkly hands and some of their other things. (I fit with what Dr Bells and Dr Cheney's patients tend to experience)

I kissed my GF after a week of my exposure as i thought that kissing wouldn't do something and my symptoms were just started so i didn't think its something will stay up to now with me and its will ruin my life !!

Anyway she developed an enlargement lymph node in her nick and she was sick for couple of weeks but thankfully as she is a multivitamin person she could beat it in a month so i wont try this again.

 

[taniaaust1]

I kissed my GF after a week of my exposure as i thought that kissing wouldn't do something and my symptoms were just started so i didn't think its something will stay up to now with me and its will ruin my life !!

Anyway she developed an enlargement lymph node in her nick and she was sick for couple of weeks but thankfully as she is a multivitamin person she could beat it in a month so i wont try this again.

Yeah swollen glands.. same thing as my ex used to get when I kissed him.. (and a fever, lethargy and malaise). I quite remember but I think he may of had body aches with it too.

Maybe she'd be immune to whatever it is now???? Most illnesses the first time someone comes in contact is the worst (the one I was kissing was chronically obese.. very very very obese.. so his system probably wasnt that healthy). Very risky to try it again thou but maybe most healthies become immune???????

None of my boyfriends who have been in great health have got issues from me. (I thought I'd given the boyfriend Im with IBS-C like I have but he went to a bowel specialist and it turns out that his is diverticulitis so Im not responsible for his IBS-C symptoms). (relief to find that out)

My sister thou.. Im sure her CFS symptoms started after I saw her accidently use the glass I'd drunk from (I tried to stop her but it was too late.. and she kept using it as she didnt believe that she could catch this). Im sure genetic predispostion also comes into things.

 

[patient.journey]

Yeah swollen glands.. same thing as my ex used to get when I kissed him.. (and a fever, lethargy and malaise). I quite remember but I think he may of had body aches with it too.

Maybe she'd be immune to whatever it is now???? Most illnesses the first time someone comes in contact is the worst (the one I was kissing was chronically obese.. very very very obese.. so his system probably wasnt that healthy). Very risky to try it again thou but maybe most healthies become immune???????

None of my boyfriends who have been in great health have got issues from me. (I thought I'd given the boyfriend Im with IBS-C like I have but he went to a bowel specialist and it turns out that his is diverticulitis so Im not responsible for his IBS-C symptoms). (relief to find that out)

My sister thou.. Im sure her CFS symptoms started after I saw her accidently use the glass I'd drunk from (I tried to stop her but it was too late.. and she kept using it as she didnt believe that she could catch this). Im sure genetic predispostion also comes into things.

It might be that she would became immune but what if she did not and i simulate her sleepy virus to wake up by giving it a push, its a something that i would not try.

BTW Tania your story indicates that you have some type of a virus that is working in your body and you cant handle it and that's not the story with every one around cause if what only we have is EBV, CMV and Herpes 6 its a not matter for other people even if it is a matter for us.

 

[Hip]

I will be waiting for your results and i will go for the same tests if you are positive and i will send it to the researchers in china after that so they can put an eye on it.

Though it is not clear if I have the Chinese "HIV-like" virus, or some other similar virus.

First of all, the incubation period for my virus is faster (my virus, it takes only 8 to 24 hours before the first symptoms appear — very fast). I noted this super-fast incubation of my virus both when I caught the virus myself (from kissing on a first date), and also on many occasions when my virus unfortunately passed to other people, after some social contact with me.

As mentioned, the Chinese "HIV-like" virus has an incubation period of 2 to 3 days, according to several infected people I communicated with in China. So this is a little different to mine.

Furthermore I don't have any of the classic Chinese "HIV-like" virus symptoms (as I listed in this earlier post in this thread), and neither do any of the 30+ people ho caught my virus.

Though I keep an open mind about the possibility that my virus may be the same as the Chinese "HIV-like" virus.

 

[taniaaust1]

It might be that she would became immune but what if she did not and i simulate her sleepy virus to wake up by giving it a push, its a something that i would not try.

BTW Tania your story indicates that you have some type of a virus that is working in your body and you cant handle it and that's not the story with every one around cause if what only we have is EBV, CMV and Herpes 6 its a not matter for other people even if it is a matter for us.

Thing is.. it isnt an issue for ALL other people thou. Ive had two or more boyfriends who had no issues at all with me kissing them. This I'd think would mean either most people are already immune to it.. or that there is some other fault in some peoples systems (or them being run down or something) which give them susceptibility to it. This is what I find very interesting, is why do some people have trouble with it while most dont.

 

[taniaaust1]

Though it is not clear if I have the Chinese "HIV-like" virus, or some other similar virus.

First of all, the incubation period for my virus is faster (my virus, it takes only 8 to 24 hours before the first symptoms appear — very fast). I noted this super-fast incubation of my virus both when I caught the virus myself (from kissing on a new date), and also on many occasions when my virus unfortunately passed to other people, after some social contact with me.

As mentioned, the Chinese "HIV-like" virus has an incubation period of 2 to 3 days, according to several infected people I communicated with in China. So this is a little different to mine.

Furthermore I don't have any of the classic Chinese "HIV-like" virus symptoms (as I listed in this earlier post in this thread), and neither do any of the 30+ people ho caught my virus.

Though I keep an open mind about the possibility that my virus may be the same as the Chinese "HIV-like" virus.

Hip.. is whatever you have very similar to Dr Bells and Dr Cheney kind of patients and what they say? or very much like symptoms Im often talking about? (curious if we both could have the same strain of a virus). Cause in my case too I think I transmit something faster then what that chinese thing does .. 1-2 days. so i was interested to hear you say 24 hrs.

 

[Hip]

Hip.. is whatever you have very similar to Dr Bells and Dr Cheney kind of patients and what they say? or very much like symptoms Im often talking about? (curious if we both could have the same strain of a virus).

I am curious too.

Do you have a link to somewhere you have listed your symptoms, taniaaust? I know you have explained them before, but my memory is falling to bits these days. I am also not aware of what Dr Bell and Dr Cheney's type of patients are like. In fact I did not realize these docs had a certain patient type. If you know of a summary of their patients' symptoms, I'd love to see it.

The symptoms my virus produced in me (and to a lesser extent, in 30 other people that caught it) I listed on my website here.

Cause in my case too I think I transmit something faster then what that chinese thing does .. 1-2 days. so i was interested to hear you say 24 hrs.

I'd say the average incubation period of my virus is around the 12 to 24 hour mark, but once I noted it was as fast as 8 hours. (On that occasion, I saw a friend that I had not seen for many months; we met for dinner at around 7 pm, and spent several hours at the table. He then went home, but at 3 am that night he awoke and started vomiting, with diarrhea; with all the classic symptoms of my virus appearing in the hours, days, weeks and months to follow. It was not food poisoning, as all of us at the table ate the same, and everyone else was fine.So it was very clear that the virus I have can incubate in an extremely short time frame.) But its typical incubation period time is 12 to 24 hours.

I discovered that there are in fact some enteroviruses that have an extremely short incubation like this: enterovirus 70 (which is from the enterovirus D group) has a 12 hour incubation period. My virus is not enterovirus 70, because EV70 has a different set of symptoms to mine; but it shows that enteroviruses are one of the viruses that can have a very fast incubation period of just 12 hours.

This rapid incubation period is only found in a few other viruses: influenza B viruses have an incubation period of around 24 hours; rhinoviruses can have an incubation period as fast as 12 hours; norovirus can have an incubation period as fast as 10 hours. But I don't think any of these viruses can cause chronic infections like you get in ME/CFS, so they are ruled out.

Coxsackievirus B, the virus strongly associated with ME/CFS, has an incubation period which is normally a little longer: 3 to 5 days. Echovirus incubation periods are 2 to 7 days.

 

[patient.journey]

Though it is not clear if I have the Chinese "HIV-like" virus, or some other similar virus.

First of all, the incubation period for my virus is faster (my virus, it takes only 8 to 24 hours before the first symptoms appear — very fast). I noted this super-fast incubation of my virus both when I caught the virus myself (from kissing on a first date), and also on many occasions when my virus unfortunately passed to other people, after some social contact with me.

As mentioned, the Chinese "HIV-like" virus has an incubation period of 2 to 3 days, according to several infected people I communicated with in China. So this is a little different to mine.

Furthermore I don't have any of the classic Chinese "HIV-like" virus symptoms (as I listed in this earlier post in this thread), and neither do any of the 30+ people ho caught my virus.

Though I keep an open mind about the possibility that my virus may be the same as the Chinese "HIV-like" virus.

We don't know if we are having the same virus but i think it is cause we caught the same way to all of us.

It took 2 days for me to start this hell i was setting with my friend yesterday and we were talking about that day i felt sick in it, he told me i remember you telling me that you feel something is wrong with you and things never went back the same.

HIV like illness in China might be the same virus we all got but having more than one billion people in that small area will provide more larger number of sick people, who can talk and can do something.

Doctors in the hall world tell people like us that they got anxiety or its a CFS so other people like us are lost and a lot of them start thinking that they are crazy or something, I have a group in Medhelp that got a dozen of suffers like us that just found it and its only been there for a month.

 

[patient.journey]

Thing is.. it isnt an issue for ALL other people thou. Ive had two or more boyfriends who had no issues at all with me kissing them. This I'd think would mean either most people are already immune to it.. or that there is some other fault in some peoples systems (or them being run down or something) which give them susceptibility to it. This is what I find very interesting, is why do some people have trouble with it while most dont.

Some times i think it could be genetics and what ever we have is a known virus that other people have it but our body couldn't handle it and this cross my mind when i think about how the biggest number of people who caught it are just healthy with it, but i cant find an answer cause except of we didn't get studied well i cant take off the idea of having a new virus from my head.

You were talking about Dr Bell and Dr Cheney's type of patients and i really need to know more about that ans i wish that you have a link or something for more information.

 

[patient.journey]

Guys what we have to do it connect with researchers so they can involve at least 5 people with our case in there studies.

I believe if they took us that there will be an amazing findings that am sure we got a virus or at least super bacterial infection, I was a healthy person and thankfully i rarely got sick but once am like this so i deserve to know why such like you guys.

Am trying to connect with all known big names like Dr.Lipkin and others name but most of them don't replay.
I think if we all start sending msgs to them it would make difference and we should do that so please help me i dont want to feel am left by my self guys.

Every mail am sending am speaking by all suffers names who are like us asking for help to all of us and that what we suppose to do.

If 5 of us will be include in a study that they will use deep sequencing for blood, and tissue samples and a genetic science too am sure something will be found and we will have an answer but as doctor Lipkin said once if you need people to hear you, you should make noise.

 

[Hip]

Hey taniaaust, I found an old post of yours here where you describe your type of ME/CFS symptoms.

I remember it now: you have lots of peripheral neuropathy-type symptoms with your ME/CFS. I am the same: I seem to have peripheral neuropathy along with my ME/CFS (though maybe not quite as severe as you have); plus I also have anhedonia (which is not a normal part of ME/CFS), and anxiety disorder. All these were precipitated by the virus I caught.

Peripheral neuropathy is of course a condition in which there is damage to nerves of the peripheral nervous system.

I think my virus has probably precipitated some autoimmune inflammation, so that the immune system attacks the peripheral nerves, leading to these PN symptoms.

General symptoms of peripheral neuropathy often include: muscle weakness, muscle twitching, muscle cramps, walking gait abnormalities, blurred vision, slow processing of visual information (you see things with your eyes, but not with your brain), hearing loss, tinnitus, balance and coordination problems, dizziness or fainting, loss of smell, dry mouth, unusual sweating or inability to sweat normally (which may lead to heat intolerance), paresthesias, skin numbness, slow wound healing, bladder control changes, dysautonomia (autonomic dysfunction), cold hands and feet (from blood circulation problems), abnormalities in blood pressure or heart rate, postural orthostatic tachycardia syndrome (which is where you get a substantial increase in heart rate when suddenly moving from a seated to a standing position), and impotence in men (erectile dysfunction).

The symptoms listed here are those typically found in peripheral neuropathy in general; the symptoms highlighted in bold are the ones I specifically experienced myself as result of this viral infection; so it would seem that my virus does cause peripheral nerve damage leading to peripheral neuropathy — that's the diagnosis I have assumed.

Dr Myhill has a good page on peripheral neuropathy.