Is it a new disease or its CFS ?

[patient.journey]

Its been almost year since that damn night that changed my life , i had sex with a CSW and in one week every thing start to change and those are my symptoms since now :

1) Oral trush on my tongue with red spots.
2) Enlargement painful lymph node in armpit , nick and groin area (CT scan proved )
3) Skin rashes on the chest and behind my ears and skin tingling.
4) fatigue.
5) muscle pain.
6) Dry mouth, Oral ulcers.
7) stomach ache.
8) abdominal pain.
9) chest pain.
10) shortness of breathing.
11) night swets on the beginning of the illness
12) nasal congestion.
13) CD 8 is higher than CD 4 and there ratio between them is under the normal.
And there other symptoms but there are the big ones that became a night mare that am 24/7 suffering of .

100 tests including all STD’s , lymph biopsy , colons copy, and they are scheduling a bone morrow biopsy and an endoscopy and still nothing appeared .. some doctors says it might be a new thing and some says that they might miss something and others got bored and asked me to take pain killers maybe my symptoms will get better by it self by the time !!!!

What i want to say that a lot of people have the same symptoms cause i saw questions about this every were in health boards and medical websites even here i found a post was written by Hanchuchu two or three years ago with no answers asking my same question could this be CFS is the same you are feeling or not ? did any one get it during sexual exusre or passed it out throw ?!

I hope we can figure something , i hope we can find help and i need answers and am sure i will find help here cause a lot of you guys are suffering from bad symptoms and i saw how you are fighting, reading and waiting researches and trying to help each other so please help me so if is it a CFS i will keep with you and will help each other or if its not i need your help so you wont see another Hanchuchu after two years again having the same question " IS IT CFS" please guys help me ..

 

[Hugocfs]

What is a CSW?

 

[SOC]

What is a CSW?

Urm..... he could be referring to a Certified Social Worker, but that doesn't seem quite relevant, so I suspect he engaged the services of a Commercial Sex Worker. It appears Omar is paying more than he anticipated for his few moments of fun without responsibility. Doesn't sound much like ME/CFS, though.

 

[Dainty]

Omar, the best way to find whether or not your symptoms match isn't to ask other patients, but rather to look at the clinical definition of CFS and compare those symptom lists to your experience.

Here is one well-known criteria list.

 

[patient.journey]

Hugocfs every one got mistake and if the book says that there is only 8 std and then we find out that we are illness with unknown thing this is not our mistake we are just the people that are paying for it ,,
Btw it shouldn't be a CSW you can find cases that people got it from regular partners that they thought they had CFS but it seems its not and they still don't know what they have ,..

 

[patient.journey]

Dainty do you think if i know were i can find here i wont go ?! i match with CFS symptoms with unknown reason if illness for more than 6 months but why did i get CFS after an exposure whats the relation

 

[Dainty]

Dainty do you think if i know were i can find here i wont go ?! i match with CFS symptoms with unknown reason if illness for more than 6 months but why did i get CFS after an exposure whats the relation

In the title of this thread you have asked if your illness is CFS or if it is a "new disease". It appeared you wanted us to evaluate your list of symptoms and respond explaining which one we think it is. I'm a bit confused as to why you've asked that if you're already confident that CFS is what you have.

As for what's the relation, your guess is as good as mine. Wish I could be more helpful.

 

[taniaaust1]

Omar by the post didnt appear to me to be at all confident he/she was believing its CFS.
..............

Omar all your symptoms (the only one I dont know about is the CD8/CD4 thing but there are immune abnormalities etc often found in ME so I suggest you to look that one up more) are found in ME/CFS. Here's one of the best symptom lists online based on studies http://wwcoco.com/cfids/bernesx.html

Also I suggest to look into systemic candidiasis seeing you've had thrush on your tongue and lots of symptoms... if I was in your shoes I'd be going the anti candida diet and treatment route to see if your symptoms improve with that. (systemic candidiasis may mean you have an immune issue).

ME (Im not refering to the general CFS group here but ME.. ME and CFS are not always the same), ME by the history of it and the outbreaks of it, appears to be contagious. Many seem to have caught it from others (some ME specialists say is an actual disease process with it eg symptoms starting to show 5-7 days after infection. I myself have infected others with something (a boyfriend.. I infected by tongue kissing). Some I infect are able to fight off whatever it is I gave them (a family member thou wasnt so lucky and remains ill.. she accidently drank out of my glass).

Stanford apparently did (or was doing) a CFS study into the CD8/CD4 .. I cant remember seeing the results but maybe its online somewhere. (be aware thou they probably used CFS patients in the study rather then ME ones so findings may not be accurate for ME).

I suggest to call your illness ME rather then CFS esp since you caught it. From your post I personally think you could have ME.

 

[Dainty]

Omar by the post didnt appear to me to be at all confident he/she was believing its CFS.
...............

...which is what confused me. Omar requested we give an opinion based on a list of symptoms, but when I provide a criteria lists says he already knows he matches it, so I'm not sure what more he's looking for. CFS is diagnosed by exclusion - if all tests come back negative and the symptom criteria are met, then the label is applied. Usually by a doctor.

I'm further confused by the given symptom list not matching the CCC along with Omar's claim that it does. I'm just scratching my head, here. Maybe I should go back to bed.

 

[Hip]

Your symptoms sound very much like the so-called "new HIV-like virus" emerging in China, which spreads through respiratory secretions (saliva). I understand that many people in China pick it up after going to a prostitute. Many infected patients are found to have low CD4 cell count, as low as 200 CD4 cells per mm3 of blood (normal CD4 counts are in the range of 500 to 1500 cells), and also often have a raised CD8 count.

Don't worry, this Chinese virus is not actually anything to do with HIV, in spite of the name the general public in China have given it. The Chinese CDC and the Pasteur Institute of Shanghai investigated this virus, and found it was not a muted HIV virus. I personally suspect this Chinese virus is an enterovirus of some sort (enteroviruses are strongly linked to ME/CFS); this virus does seem to produce a condition with many of the features of ME/CFS.

A lot of people feel ill for the first two years with this "HIV-like virus", but then start to get better as their CD4 and CD8 counts normalize.

More info can be found here: https://sites.google.com/site/newhivaidslikeviruschina/

There is also a thread on the Phoenix Rising forums about this Chinese disease:
http://forums.phoenixrising.me/index.php?threads/emergency-report-from-china.742/

At one point I though I had this virus myself (symptoms of the virus I caught are here).

EDIT: Reading more of your post, I see you are already aware of this Chinese virus and Hanchuchu's thread.

 

[GcMAF Australia]

Its been almost year since that damn night that changed my life , i had sex with a CSW and in one week every thing start to change and those are my symptoms since now :
1
I hope we can figure something , i hope we can find help and i need answers and am sure i will find help here cause a lot of you guys are suffering from bad symptoms and i saw how you are fighting, reading and waiting researches and trying to help each other so please help me so if is it a CFS i will keep with you and will help each other or if its not i need your help so you wont see another Hanchuchu after two years again having the same question " IS IT CFS" please guys help me ..

I may be the only one to have this view, but your immune system seems compromised. Regardless of the actual infection.
I think about up to 80% of CFS people are getting relief from GcMAF (or MAF yogurts)
Even AIDS & autism people are being treated with GcMAF
A GcMAF page is coming here shortly (in preparation)
hope this helps

 

[patient.journey]

Dainty i have the main symptoms for CFS fatigue for more than 6 months , sore throat, tender lymph's and restless sleeping without refreshing and more as i wrote without a diagnose proved illness up to now so i match this criteria at least as 2 infection disease doctors says but they cant figure out what is the relation between this and my exposure and that why am asking !! so i can find people that got this same way i did and we can figure the common stuff and the reality behind this ,, we don't like to see other people getting infect with this thing otherwise we can start sleeping with any one so this would spread and people start really search for an answers

 

[patient.journey]

Hip thanks for your replay !

I know that i match Hanchuchu symptoms and i know he cam here with my same questions and asking for help , i always chick this web site for HIV like disease in china and i used it to take some research lab names so i could send messages for them asking if there ongoing researches as the web site mentioned and the answer was yes thankfully ! but with no range time to finish of this anyway the other good news in the website that in January 2012 they isolated a microbe but they still don't know what is it exactly and researches are still going in four labs ..

About what you mentioned about CD4 and 8 getting back t normal with some patiens you missed something and here is it "Some people also experience some degree of remission from symptoms after around two years with this pathogen. In all cases, though, this Chinese HIV-like pathogen causes a chronic, persistent infection that does not disappear." that even when CD 4 and 8 start to be normal people still to be sick ,,



Finally what you said about entroviruses is one of the theories i read and i wont mind to test for them but i couldn't find a test for multiple Spp in my area and i don't know if there are any in yours or if you have been tested for this and what was the results ?!

 

[Hip]

Hip thanks for your replay !

I know that i match Hanchuchu symptoms and i know he cam here with my same questions and asking for help , i always chick this web site for HIV like disease in china and i used it to take some research lab names so i could send messages for them asking if there ongoing researches as the web site mentioned and the answer was yes thankfully ! but with no range time to finish of this anyway the other good news in the website that in January 2012 they isolated a microbe but they still don't know what is it exactly and researches are still going in four labs ..

About what you mentioned about CD4 and 8 getting back t normal with some patiens you missed something and here is it "Some people also experience some degree of remission from symptoms after around two years with this pathogen. In all cases, though, this Chinese HIV-like pathogen causes a chronic, persistent infection that does not disappear." that even when CD 4 and 8 start to be normal people still to be sick ,,

Finally what you said about entroviruses is one of the theories i read and i wont mind to test for them but i couldn't find a test for multiple Spp in my area and i don't know if there are any in yours or if you have been tested for this and what was the results ?!

There is only one testing laboratory in the whole of the US that has sensitive enough tests for chronic enterovirus infections, and that is ARUP Lab in Utah.

Dr John Chia, who is an expert on enteroviruses, found that only this lab could detect the enteroviruses in his ME/CFS patients. Enteroviruses found ME/CFS are either the coxsackievirus B type, or the echovirus type, and the ARUP tests for these are here:

ARUP coxsackievirus B Antibodies
ARUP echovirus antibodies

These tests will tell you which particular serotypes of the virus you have (CVB1, CVB2, CBV3, etc).

Further info on enterovirus testing: Enterovirus Foundation: Testing for chronic enteroviral infections.



I had a lot of email conversations with Hanchuchu, and he says he is much better now. But he is not fully cured. He had terrible chest pains all the time for a year or two, but those eventually went away.

 

[Overstressed]

Its been almost year since that damn night that changed my life , i had sex with a CSW and in one week every thing start to change and those are my symptoms since now :

1) Oral trush on my tongue with red spots.
2) Enlargement painful lymph node in armpit , nick and groin area (CT scan proved )
3) Skin rashes on the chest and behind my ears and skin tingling.
4) fatigue.
5) muscle pain.
6) Dry mouth, Oral ulcers.
7) stomach ache.
8) abdominal pain.
9) chest pain.
10) shortness of breathing.
11) night swets on the beginning of the illness
12) nasal congestion.
13) CD 8 is higher than CD 4 and there ratio between them is under the normal.
And there other symptoms but there are the big ones that became a night mare that am 24/7 suffering of .

100 tests including all STD’s , lymph biopsy , colons copy, and they are scheduling a bone morrow biopsy and an endoscopy and still nothing appeared .. some doctors says it might be a new thing and some says that they might miss something and others got bored and asked me to take pain killers maybe my symptoms will get better by it self by the time !!!!

What i want to say that a lot of people have the same symptoms cause i saw questions about this every were in health boards and medical websites even here i found a post was written by Hanchuchu two or three years ago with no answers asking my same question could this be CFS is the same you are feeling or not ? did any one get it during sexual exusre or passed it out throw ?!

I hope we can figure something , i hope we can find help and i need answers and am sure i will find help here cause a lot of you guys are suffering from bad symptoms and i saw how you are fighting, reading and waiting researches and trying to help each other so please help me so if is it a CFS i will keep with you and will help each other or if its not i need your help so you wont see another Hanchuchu after two years again having the same question " IS IT CFS" please guys help me ..

Hi Omar,

I 'catched' this disease the same way you did, and underwent numerous tests, and even more consultations with specialists. Some, say indeed, this might be something new, others say literally: don't underestimate the power of your immune system, it might clear the virus on its own. Fact is, an STD-specialist told me that there are many people complaining about the same symptoms, and testing negative on all STDs.
Btw, at that stage, my CD8 went also up, not much, it was kissing the upper border of the reference range. Actually, it's a normal reaction to a virus infection. If it remains up, it might mean autoimmune, I think.
Symptoms don't tell everything, because co-infections play a role too, and that's why the same disease might have so many faces. And yes, I had a number of these symptoms too, but you catched this a year ago ? Some symptoms may subside, and others might just walk-in, uninvited. Do you have eye-pain?

Best wishes,
OS.

 

[patient.journey]

Hip Again thanks for your replay ..

There is only one testing laboratory in the whole of the US that has sensitive enough tests for chronic enterovirus infections, and that is ARUP Lab in Utah

I checked this lab site before and i found that they are testing for only 11 types of Enrovirals only but i think that they are the major ones ! is that right ? and did you test for any one of them ?!

I had a lot of email conversations with Hanchuchu, and he says he is much better now. But he is not fully cured. He had terrible chest pains all the time for a year or two, but those eventually went away.

Thats great can you please give me his email so i can see how did he work this out , what treatment or herbs he is using and and what tests he ran also ,,,
ITS WILL BE AWESOME IF I COULD GET SUCH INFORMATION AND I WONT FORGET SUCH A HELP FROM YOU

 

[patient.journey]

Omar by the post didnt appear to me to be at all confident he/she was believing its CFS.
..............

Omar all your symptoms (the only one I dont know about is the CD8/CD4 thing but there are immune abnormalities etc often found in ME so I suggest you to look that one up more) are found in ME/CFS. Here's one of the best symptom lists online based on studies http://wwcoco.com/cfids/bernesx.html ........

Tania thank for your replay ,, what i can see that you infected other people !!
First i thought that ME i another name fro CFS as many pages say ..second what tests did you run cause its sucks in this area its all about theories first one is a new virus/microbe like the "HIV like disease in china" or what other people says that is this is a systemic bacteria (Mycoplasma, Lyme, Bartonella Spp, Rickesttia Spp, Babesiosis, Ehrlichiosis (HME and HGA) ,Brucella Spp Chlamydia pneumonia) "I have been tested for Mycoplasma pneumonia and Chlamydia pneumonia both are negative same for Brucella" I tested also for EBV,CMV with both high titres and positive EA in EBV and finally there are ongoing researches about XMRV/MLV viruses ,, its really enoying specially in people like us who can infect people cause we got something else am sure of that there is something that is allowing dormant viruses to reactivate and then we become CFS patient but what is it ?!
its been a year for me and continuing to search and asking here and there waiting new researches to be done maybe it will have something new to say at least they caught this small bug that changed our life cause no one deserve this i need to have a family and kids like very one here wants too and i cant infect my GF or my future wife also my kids or my family "since i got ill i stopped eating with my family in the same plate or using any one cups" cause i cant see them suffering because of me i cant take the guilt !!​

 

[patient.journey]

I may be the only one to have this view, but your immune system seems compromised. Regardless of the actual infection.
I think about up to 80% of CFS people are getting relief from GcMAF (or MAF yogurts)
Even AIDS & autism people are being treated with GcMAF
A GcMAF page is coming here shortly (in preparation)
hope this helps

Gcmaf Australia thanks for the advice but i have read this in there website
" CFS, HIV, XMRV, Lyme (15% respond, most appear to have the VDR gene blocked and the viruses conceal themselves with biofilms)" maybe when it reach 5% or something i will give it a try ,,

 

[patient.journey]

Hi Omar,

I 'catched' this disease the same way you did, and underwent numerous tests, and even more consultations with specialists. Some, say indeed, this might be something new, others say literally: don't underestimate the power of your immune system, it might clear the virus on its own. Fact is, an STD-specialist told me that there are many people complaining about the same symptoms, and testing negative on all STDs.
Btw, at that stage, my CD8 went also up, not much, it was kissing the upper border of the reference range. Actually, it's a normal reaction to a virus infection. If it remains up, it might mean autoimmune, I think.
Symptoms don't tell everything, because co-infections play a role too, and that's why the same disease might have so many faces. And yes, I had a number of these symptoms too, but you catched this a year ago ? Some symptoms may subside, and others might just walk-in, uninvited. Do you have eye-pain?

Best wishes,
OS.

Hi Overstessed its great to know that am not alone and you are not cause we need each others and every time i get in a new health board i found new people like me and you and am really sorry for your situation cause i know what is this pain and how does it hurt ,,

Its really hurt that we got this new thing "As they say" when i had it i never thought i would be in this place i thought i will be ok in a week or two ,it was my first time when i brake up with my 5 years GF and i went out stupidly drinking and here am i while other people use CSW regularly are damn fine !! is it karma or what ever we can call it i don't know ! am sick of testing but i cant stop am sick of fighting with doctors saying I DON'T KNOW and asking me to go to USA or Europe maybe they will figure something while i don't have the cash for that and more stuff , thanks god some of my doctors are amazing that we search together and we are friends now.

CD8 is high cause your body is fighting an infection it could be systemic bacteria or a virus i don't know as doctors don't but this bug is bad its letting all other dormant viruses reactivate as testing titres said or its maybe that bad by it self am not sure ,, I have headaches sometimes and i eye pain when i have that but not all the time and i have more symptoms than i mentioned but just like i said before those are big ones..

What tests did you ran and something weird appeared ? do your doctors have any thought of rare diseases that might be the reason like systemic bacteria ,retro or entroviruses or any thing else ?!

Please keep updating me brother a group can do much more than an individual can do ..

 

[Overstressed]

Hi Omar,

I guess with the first symptoms you had (candida?) and googling the internet, you might thought you have HIV, right? At least this was the case with me. Despite negative tests throughout the 1.5 year after, I still thought I have HIV. I was very suicidal at that moment, and ended up in the psychiatric clinic, thanks to my family-doctor, who saved my life by reading my thoughts.
After that, I thought I might have Hep-C, my liver was not doing great at that moment. Now, I know it was because EBV and/or CMV reactivated with me, causing my liver enzymes to go up. Soon after, I read about HTLV, another very nasty retrovirus, and I had every reason to think I was infected by that virus, since the person I had sex with, came from a region where HTLV is endemic. I had quiet some test on HTLV too, all negative, but I was sure it had to be HTLV. So, I came into contact with a incredible HTLV-researcher, who ran a very sensitive HTLV-test on me, used in research. It's no commercial test. It was negative too. So, no HTLV. Since she's a doctor too, she analysed my symptoms but came to the conclusion that it might be a disease that's not documented, yet. She then sent me off to a CFS specialist, who diagnosed me with CFS, right after. Though, before I was sent to that CFS-specialist, I asked if she thought I might have CFS, she literally said: no, I don't think you have CFS, since CFS-people are very very ill, and I didn't look like that.

I tell you this, because when your symptoms persist, you might go through the same things I went through. Concerning tests, HTLV might one you like to have. Did you have some autoimmune tests, yet ?

Take care,
Overstressed.