Is it a new disease or its CFS ?

[patient.journey]

Any more details on this? Where abouts / how long has it been there etc etc? Try and find some related / similar images on Google, perhaps?

My girlfriend and I have had sex several times in the last few days but today we are both incredibly sore / irritated. My symptoms look / sound exactly like:

http://en.wikipedia.org/wiki/Balanitis

and my girlfriend - yet again - has thrush and 'a really sore labia'. I also seem to have been getting more and more papules around the head of my penis, too(?) Fatigue is still extreme: crashed at midday - two hours after waking up - and had to have a 4 hour nap before I began to feel even remotely alive.

I think i got those balanitis too as i have something like this but am not sure is it this or some kind and HPV but i dont think it is HPV because its not warts !

I will try to have biopsy test for it so i would be sure what is it (OUCH) !!

this is the first time your girlfriend having symptoms ? when you get a new infection the white blood cells get down then rise up again and i hope that is her case ,,,,

 

[Sherezade]

Hi guys,

The more i Think about it, the more i get convinced that i caught the chinese virus. First of all, i got all the symptoms described, all of them, I didn't miss one! In my country there's been a huge chinese inmigration in the last years, so, i guess that could be a way of transmission, specially if is so contagious like it's supposed to be.
Anyway, I talked to my infectologist about the chinese virus. She denied that such a thing existed, she said that people make up things and post them in the internet to make people terrified. And then she told me that none retrovirus in transmitted by saliva. Anyway, that make me doubt, I don't know what to think, really.
I'm trying with all my heart and mind to believe in the doctors, but it's difficult when i have all these awful symptoms.

I just wanted to share that with you guys, let me know what you think.

 

[Sushi]

Hi guys,

The more i Think about it, the more i get convinced that i caught the chinese virus. First of all, i got all the symptoms described, all of them, I didn't miss one! In my country there's been a huge chinese inmigration in the last years, so, i guess that could be a way of transmission, specially if is so contagious like it's supposed to be.
Anyway, I talked to my infectologist about the chinese virus. She denied that such a thing existed, she said that people make up things and post them in the internet to make people terrified. And then she told me that none retrovirus in transmitted by saliva. Anyway, that make me doubt, I don't know what to think, really.
I'm trying with all my heart and mind to believe in the doctors, but it's difficult when i have all these awful symptoms.

I just wanted to share that with you guys, let me know what you think.

You might want to watch the latest video interview with Dr. Chia where he talks about whether or not ME/CFS is infectious:

http://forums.phoenixrising.me/inde...dr-chia-part-3-me-cfs-alert-episode-40.21623/

Sushi

 

[taniaaust1]

Hi guys,

The more i Think about it, the more i get convinced that i caught the chinese virus. First of all, i got all the symptoms described, all of them, I didn't miss one! In my country there's been a huge chinese inmigration in the last years, so, i guess that could be a way of transmission, specially if is so contagious like it's supposed to be.
Anyway, I talked to my infectologist about the chinese virus. She denied that such a thing existed, she said that people make up things and post them in the internet to make people terrified. And then she told me that none retrovirus in transmitted by saliva. Anyway, that make me doubt, I don't know what to think, really.
I'm trying with all my heart and mind to believe in the doctors, but it's difficult when i have all these awful symptoms.

I just wanted to share that with you guys, let me know what you think.

I dont think Ive heard it being called a retovirus... no one knows what kind of virus it is. Mainstream doctors wouldnt have heard of this as other then making news in China some time ago, it didnt make any news elsewhere.

It could even be a new "type" of virus which just hasnt been discovered yet! Im sure they havent discovered everything yet.

Its probably not worth worrying over unless you caught the thing you have or have passed something on to others.

 

[hivlikevirus]

When I had bad thrush (before ME/CFS).. my boyfriend got very red and sore too.. He developed papules where you are saying you have the issue..it was horrible..they even went weepy as he was that sore.

Wait, what? Weepy? On penis(?!). Been showering 2-3 times a day (just water no soap) and it seems to be slowly drying / healing. But f***k, all this stuff can really put you off sex for good, huh(?) What happened to him after that? It all just cleared up or...?

Ive struck the same thing and was told thou my EEGs dont show epilepsy, I got told that its possible I have it still as for some it isnt diagnosed unless one is having the EEG done while actualy having a seizure. So I was told to get to the hospital while having one.

?!!??!!?!?!!??! Don't know whether to laugh or cry. W H A T. Really(?!?!?!?!)

Neurologist here is only only Tuesday through Thursday (so haven't booked yet) but hopefully there won't be too much of a wait for an appointment. Will definitely make sure we physically get all and any results. That's quite an important point actually:

Guys, if you're having tests done - please make sure you physically get a printout / copy of all of the results and keep them somewhere safe.

The doctor we saw the other day didn't even MENTION the depleted iron levels. To be honest, I don't think he even saw them / bothered reading them properly. 'Glucose fine, blood levels fine... ooh, allergy to grass!' If I hadn't asked for a copy we literally wouldn't even know about it. Shocking really.

The abnormally low iron storage (I have that too, thou I eat meat and a lot of it.. 2-3 times daily).. my CFS specialist has told me he sees that a lot in his ME/CFS patients. His theory is we are using our iron up at a faster then normal rate.. to replace damaged cells.

Are you taking anything for this? Post-appointment we immediately went to go and buy some iron supplements but all of the packaging says 'not to be used for the treatment of iron deficiency conditions'. Huh?!

I think i got those balanitis too as i have something like this but am not sure is it this or some kind and HPV but i dont think it is HPV because its not warts !

I will try to have biopsy test for it so i would be sure what is it (OUCH) !!

this is the first time your girlfriend having symptoms ? when you get a new infection the white blood cells get down then rise up again and i hope that is her case ,,,,

No, this has been going on for almost 5 months or so now - just used to talk to you under another name over on medhelp.

Hi guys,

The more i Think about it, the more i get convinced that i caught the chinese virus.

Yeah, me too. All of the symptoms are definitely there anyway. And my girlfriend is Chinese, hmm...(!)

I know it's hard but we will get there (slowly), in the meantime just try and relax and look after ourselves. Whatever it is - if anything - it's not gonna kill us anytime soon and hey, at least it's not HIV!

 

[taniaaust1]

Wait, what? Weepy? On penis(?!). Been showering 2-3 times a day (just water no soap) and it seems to be slowly drying / healing. But f***k, all this stuff can really put you off sex for good, huh(?) What happened to him after that? It all just cleared up or...?

No.. it didnt clear up itself, it just got worst and worst till he couldnt even put his jeans on as it was too sore for anything to be touching. He had to go to the doctor and get stuff for thrush (I think she also put him on oral meds for it too).

?!!??!!?!?!!??! Don't know whether to laugh or cry. W H A T. Really(?!?!?!?!)

Yeah the medical person I saw really said that. Sometimes one wonders where their brains get to.

Are you taking anything for this? Post-appointment we immediately went to go and buy some iron supplements but all of the packaging says 'not to be used for the treatment of iron deficiency conditions'. Huh?!

No I arent taking anything for my iron.. as long as Im able to maintain my blood levels (even without the stores) my specialist seems to be happy to only comment on my low stores but not tell me to do anything else. (I know many other specialists would have me on something for that with my stores making me classified as borderline anemiac due to the no stores even thou the blood levels are okay .. the blood test results said borderline anemia). I couldnt take iron anyway even if he told me too.. it gives me severe constipation and I got a bowel prolapse last year when a medication gave me more constipation (take care with amytripyline it slows peristalsis and can wreck your bowel). It put my IBS-C out of control to the point where I almost had to have surgery.

 

[Hip]

Hi guys,

The more i Think about it, the more i get convinced that i caught the chinese virus. First of all, i got all the symptoms described, all of them, I didn't miss one! In my country there's been a huge chinese inmigration in the last years, so, i guess that could be a way of transmission, specially if is so contagious like it's supposed to be.
Anyway, I talked to my infectologist about the chinese virus. She denied that such a thing existed, she said that people make up things and post them in the internet to make people terrified. And then she told me that none retrovirus in transmitted by saliva. Anyway, that make me doubt, I don't know what to think, really.
I'm trying with all my heart and mind to believe in the doctors, but it's difficult when i have all these awful symptoms.

I just wanted to share that with you guys, let me know what you think.

People with this Chinese virus do get better after one or two years. One man named Hanchuchu, who posted on this forum, caught the Chinese virus and was pretty ill, having severe anxiety symptoms, severe depression, anhedonia, suicidal thoughts, and severe constant chest pain. But after two years he got much better.

So if you do have the Chinese virus, Sherezade, you probably will be much better in a year or two.


In China, the "HIV-like" virus is taken seriously by researchers there, but the Chinese government tend to deny the virus is real.

 

[Survivor84]

I recently sent an e-mail to professor Nicolson describing our situation and giving him links to this forum and hivlikevirus website. This is the response I got
Dear Tanya,

Your situation is more common than you realize. Often patients contract
chronic infections from sexual activity. The more common ones that can
cause the type of chronic systemic conditions are intracellular bacterial
infections, such as Mycoplasma, Chlamydia, etc. There are tests for these
infections, but they are not always accurate and usually depend on
detection at maximum symptom severity--otherwise they usually come up
negative.

Such infections almost always progress to systemic infections involving
most if not all organs and tissues, resulting in complex symptoms that do
not provide physicians with a reliable indicator of infection type or even
that an infection is involved. In certain patients they can cause even
worse autoimmune and degenerative diseases.

I have attached some treatment information for the most common types of
infections found in circumstances such as yours. As you will see much of
this you can do yourself, but some will require a physician's input and
council.

Prof. Emeritus Garth Nicolson

 

[Survivor84]

He sent 3 pdf files. What do you guys think of what he is saying?

 

[hivlikevirus]

Such infections almost always progress to systemic infections involving
most if not all organs and tissues, resulting in complex symptoms that do
not provide physicians with a reliable indicator of infection type or even
that an infection is involved. In certain patients they can cause even
worse autoimmune and degenerative diseases.

Bleak reading but at the same time: wonderful to have a professional opinion and even more so: one that actually tells us we're not just crazy. Will maybe just choose to ignore the almost inevitable full-body degenerative disease prognosis right now though...(!) We'll beat this before then - promise!

Is there any chance you could maybe upload the attachments here? There's an 'Upload a File' button when you create a post - hopefully it'll work for pdfs. (If not, could please forward them to me and I'll host them on the site for everyone else? My e-mail address is same as my username here, just @gmail.com on the end.)

Thank you so much for getting in touch with him and posting that here btw! He sounds like a great contact to have!

 

[Survivor84]

I will do that. I did email him again and encouraged him to please check out this forum along with the emergency report from China and your website as well. I wish he would consider doing a case study on one of us.

 

[urraco2012]

He sent 3 pdf files. What do you guys think of what he is saying?

Finally a real doctor with logical thinking. Regrettable today doctors are just a mediator between patients and laboratory tests, I think they lost their scientific thinking and for them is just black or white depending on the results of the tests.
I think basically the same that Mr Nicolson, somehow we are more susceptible for sexual or casual infections and that progress in our body to become chronic.

Can you send the treatment information?

 

[Survivor84]

Finally a real doctor with logical thinking. Regrettable today doctors are just a mediator between patients and laboratory tests, I think they lost their scientific thinking and for them is just black or white depending on the results of the tests.
I think basically the same that Mr Nicolson, somehow we are more susceptible for sexual or casual infections and that progress in our body to become chronic.

Can you send the treatment information?

Yes I will. I think there is one major culprit going unrecognized, but because ppl are unaware they have it and are not being treated, the culprit is reeking havoc and creating other infections that may be easy to transmit. Maybe that's why some people are experiencing more or less symptoms and the incubation period may be different. I feel with prostitutes they are probably carrying more than others because they have been exposed to so much more from there line of work. Maybe that's why even low risk situations are even being effected.

 

[Survivor84]

Here are the files, i hope it worked, let me know

 

[patient.journey]

People with this Chinese virus do get better after one or two years. One man named Hanchuchu, who posted on this forum, caught the Chinese virus and was pretty ill, having severe anxiety symptoms, severe depression, anhedonia, suicidal thoughts, and severe constant chest pain. But after two years he got much better.

So if you do have the Chinese virus, Sherezade, you probably will be much better in a year or two.


In China, the "HIV-like" virus is taken seriously by researchers there, but the Chinese government tend to deny the virus is real.

It took him 3 years as the last time you mentioned this ! while others takes 2 years as you said to get better but the question is whither we got the Chinese virus and we could get over it or not ?!

I wish that we will cause its painful

 

[patient.journey]

I recently sent an e-mail to professor Nicolson describing our situation and giving him links to this forum and hivlikevirus website. This is the response I got
Dear Tanya,

Your situation is more common than you realize. Often patients contract
chronic infections from sexual activity. The more common ones that can
cause the type of chronic systemic conditions are intracellular bacterial
infections, such as Mycoplasma, Chlamydia, etc. There are tests for these
infections, but they are not always accurate and usually depend on
detection at maximum symptom severity--otherwise they usually come up
negative.

Such infections almost always progress to systemic infections involving
most if not all organs and tissues, resulting in complex symptoms that do
not provide physicians with a reliable indicator of infection type or even
that an infection is involved. In certain patients they can cause even
worse autoimmune and degenerative diseases.

I have attached some treatment information for the most common types of
infections found in circumstances such as yours. As you will see much of
this you can do yourself, but some will require a physician's input and
council.

Prof. Emeritus Garth Nicolson

Good work Tanya as we discussed this i want to you and the guys in USA to talk with him so he could take your samples and maybe ours too so he could search for some infections on them ,,,,

Try your best with that Prof Garlth is a good person and he might help us in this !

I really think its a virus than a microbe but we need to role this out first

Beside we need to connect with other doctors like Chia and Enlander so we will be recognize as a group and would

be test for our disease cause , no one will listen to us except CFS/ME real doctors so guys in Europe and USA we should try them all and we need to start making a schedule for that !!

 

[Survivor84]

Good work Tanya as we discussed this i want to you and the guys in USA to talk with him so he could take your samples and maybe ours too so he could search for some infections on them ,,,,

Try your best with that Prof Garlth is a good person and he might help us in this !

I really think its a virus than a microbe but we need to role this out first

Beside we need to connect with other doctors like Chia and Enlander so we will be recognize as a group and would

be test for our disease cause , no one will listen to us except CFS/ME real doctors so guys in Europe and USA we should try them all and we need to start making a schedule for that !!

Omar I emailed him again to see if he is still taking patients and ask if it was possible use this as a study and encouraged him to check this forum, emergency report from China and the HIV like virus
Com. I hope he will actively help. Sushi suggested we look for researchers on pubmed

 

[Survivor84]

It took him 3 years as the last time you mentioned this ! while others takes 2 years as you said to get better but the question is whither we got the Chinese virus and we could get over it or not ?!

I wish that we will cause its painful

Question is lets say the symptoms subside and we feel better, we need to know if its chronic and will it remain transmissible?

 

[patient.journey]

Omar I emailed him again to see if he is still taking patients and ask if it was possible use this as a study and encouraged him to check this forum, emergency report from China and the HIV like virus
Com. I hope he will actively help. Sushi suggested we look for researchers on pubmed

A good researcher would be a CFS/ME doctor that he is an infection disease doctor too in the same time as they have the biggest interest in us and if we could find other doctors we wont mind am sure !

Question is lets say the symptoms subside and we feel better, we need to know if its chronic and will it remain transmissible?

Good question but believe if my symptoms disappear i wont think about this again cause i really want to forget those years of my life

 

[Sherezade]

You might want to watch the latest video interview with Dr. Chia where he talks about whether or not ME/CFS is infectious:

http://forums.phoenixrising.me/inde...dr-chia-part-3-me-cfs-alert-episode-40.21623/

Sushi

Thank you sushi, i watched the video and listened very carefully. As i understood Dr Chia thinks that this disease is only infectious in the acute phase and not in the chronic phase. But i respectfully doubt that observation based in my case. The guy that infected me was obviosly in his chronic phase, i think he's been sick since long before. He doesn't drive himself and i think he's got some degree of dementia already. He is a very agressive person.

Anyway, i will consider the words of Dr Chia seriously because he is the experienced doctor, and specially because i can't live with the guilt of being infecting other people. I need some peace to my mind.