Is it a new disease or its CFS ?

[patient.journey]

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...Overstressed.

It all came together it might be there was couple of days between them but i don't remember what came first rashes or white tongue cause both were 11 months ago same as painful lymph nodes

I ran HTLV1/2 test with the confirmation i sent it to Biomins lab in Europe that search for every gene on it and all were negative thanks god , i ran ANA twice and it was negative same for Hep A,B,C

 

[taniaaust1]

[/QUOTE]

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

This is also now an "International Consensus definition" out for ME.. I suggest for you to look it up. In that it also states that those who have ME should be removed from a CFS diagnoses.

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

You are kind of lucky with the testing you've managed to get done.. many of us cant get many tests done at all due to not being able to find doctors who will run them. I have thou been tested for most things you mentioned there (lyme isnt supposed to exist in my country thou so I never was tested for that). I couple of those things on your list, it took over 10 years before a doctor tested me for them.

am sure of that there is something that is allowing dormant viruses to reactivate and then we become CFS patient but what is it ?!

I too are sure of the reacting virus thing and do have that issue happening myself. (Ive had herpes inside my mouth.. all over the roof of it, twice this year). I probably have other stuff reactiving too (ive had both severe mono before and also carry toxo and CMV.. I could be carrying more but havent been well tested)

Hanchuchu thou did seem to have a different thing then I do.. I remember his posts well as I was really interested in them at the time. His skin went very wrinkly (I think it was his hands) and he said that those who had what he had, had that going on. Ive never had my skin going like that. His whole symptom complex the way it was, seemed quite different to my own.


I suggest to work out what subgroup you are, if you are going to accept you have CFS and then look at what patients like yourself are doing as far as treatments etc go... I personally believe there quite a few different illnesses being lumped under that banner so best to find others presenting like yourself with similar history. (I myself really fit with the Cheney patients and what Cheney describes as far as the MEdisease process goes (im right at his last stage now.. developing issues with the heart.. in my case two leaky heart valves which indicate a MVP).. Im often astounded when I read his stuff as it fits my own illness experiences so well.

*note.. whatever colour you did that post to me, the writing dont appear on those who have choose the darker screens, so the only way we can read it is to highlight everything. Consider using a different colour.

ps i used to have issues with candida too.. even before I got ME. eg I had to always take anti fungal pills if I was going to be taking antibiotics so I wouldnt break out in candida. I also had candida with both my pregnancies which was very diifficult to get rid of. Fortunately I dont seem to get that now (maybe due to all the things I did over the years.. from olive leaf extract and a whole lot of other stuff.. no sugar).

 

[Overstressed]

This is also now an "International Consensus definition" out for ME.. I suggest for you to look it up. In that it also states that those who have ME should be removed from a CFS diagnoses.



You are kind of lucky with the testing you've managed to get done.. many of us cant get many tests done at all due to not being able to find doctors who will run them. I have thou been tested for most things you mentioned there (lyme isnt supposed to exist in my country thou so I never was tested for that). I couple of those things on your list, it took over 10 years before a doctor tested me for them.



I too are sure of the reacting virus thing and do have that issue happening myself. (Ive had herpes inside my mouth.. all over the roof of it, twice this year). I probably have other stuff reactiving too (ive had both severe mono before and also carry toxo and CMV.. I could be carrying more but havent been well tested)

Hanchuchu thou did seem to have a different thing then I do.. I remember his posts well as I was really interested in them at the time. His skin went very wrinkly (I think it was his hands) and he said that those who had what he had, had that going on. Ive never had my skin going like that. His whole symptom complex the way it was, seemed quite different to my own.


I suggest to work out what subgroup you are, if you are going to accept you have CFS and then look at what patients like yourself are doing as far as treatments etc go... I personally believe there quite a few different illnesses being lumped under that banner so best to find others presenting like yourself with similar history. (I myself really fit with the Cheney patients and what Cheney describes as far as the MEdisease process goes (im right at his last stage now.. developing issues with the heart.. in my case two leaky heart valves which indicate a MVP).. Im often astounded when I read his stuff as it fits my own illness experiences so well.

*note.. whatever colour you did that post to me, the writing dont appear on those who have choose the darker screens, so the only way we can read it is to highlight everything. Consider using a different colour.

ps i used to have issues with candida too.. even before I got ME. eg I had to always take anti fungal pills if I was going to be taking antibiotics so I wouldnt break out in candida. I also had candida with both my pregnancies which was very diifficult to get rid of. Fortunately I dont seem to get that now (maybe due to all the things I did over the years.. from olive leaf extract and a whole lot of other stuff.. no sugar).

Hi Tania,

it's interesting to read about your leaky heart valves. My cardiologist mentioned this to me a few years back, during a routine consult. The year after, he told me, either he overreacted the year before, or it got better. I was using Gc-Maf at that very moment, perhaps that improved my leaking heart-valve? Since then, it did not get worse. He noticed last year some other thing, nl. my main artery was 4.1cm, which of normal people is about 3cm. So, that needs very careful observation. He didn't know if that was normal with me. But, the literature says, when it reaches 5cm, I need a heart surgery, otherwise the artery might rupture causing death. The good news is, Belgian reasearchers found the genetic cause of this, and already have some meds to solve this, perhaps without even surgery.

Did you had that checked?

Best wishes,
OS.

 

[patient.journey]

Hi Tania

I suggest for you to look it up. In that it also states that those who have ME should be removed from a CFS diagnoses.

New information i think few people knows about

You are kind of lucky with the testing you've managed to get done.. many of us cant get many tests done at all due to not being able to find doctors who will run them. I have thou been tested for most things you mentioned there (lyme isnt supposed to exist in my country thou so I never was tested for that). I couple of those things on your list, it took over 10 years before a doctor tested me for them.

I have been suffering for a year and the only thing amdoing is searching cause its my life and i found amazing people that they love to help may god bless them all ,, my doctors got shock from the list i have but they are supporting me to test for even for the ones that aren't usually found here because it might be sexually transmitted even 1/1000 i will go for it and about candida i took Flucnazole for 2 weeks 150 mg but when i just stop it it came back again and am including
candida IgG,IgA,IgM in my list ..

Finally what Hanchuchu was talking about is my stuff i think m its some type pf infection that leads to ME/CFS so that why i should keep an eye here and there and all of you guys should do the same cause it could help you all to find such a pathogen that suppress the immunity system

 

[patient.journey]

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.

I just learned how to mark people in my replay so they know i replayed back and i wish you can my see my replay

 

[xks201]

Yep that's usually all it takes to stop having sex with dirty girls. lol

 

[patient.journey]

Yep that's usually all it takes to stop having sex with dirty girls. lol

What a nice replay the first thing i got in mind that i hope you got this too but then i thought that no person deserve this, btw you can get it from any one dont ever make fun of sick people, karma will hit you some day and you will be crying .. it was my first time ever with a CSW and i know people that do this weekly with nothing but it seems like god loves me and he wants to show me something by that or to erase my guilts by the pain am suffering of ..

thanks for your nice replay hop you wont pass here again..

 

[xks201]

That's what it took me. My nuts swelled up to the size of grapefruits. After that I stopped sleeping with girls on the first night. It's nothing personal or meant to be taken offensively it has happened to all of us. Luckily a shot of rocephin got rid of it. She wasn't a prostitute but she wasn't an angel. Shit happens man I'm sorry to hear this happened to you and hope you can figure it out. Sometimes an infection can mess with your hormones so check those out too.

You just have to figure that the people that sleep with these girls on a regular basis probably have AIDS or some disease which is why they don't have a girlfriend they can sleep with. Hopefully you used a condom.

IT's happened to me another time too where I had a bad sore throat after I just kissed her. I have been traumatized myself and that was the end of my playboy career.

 

[Hip]

Hip Again thanks for your replay ..

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 ?!

This is the lab that Dr Chia uses all the time. Their coxsackievirus B test covers all 6 of the coxsackievirus B's, which are the most important (and nastiest) chronic enteroviruses, and their echovirus test covers many of the echoviruses.

I wanted to get tested myself, but unfortunately ARUP do not accept blood samples from outside the US.

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

I have emailed Hanchuchu and asked him to either comment on this thread, or to send you a private message via this forum. I am not sure he has much to offer in the way of advice, though.


One other bit of useful info: I heard that the University of California, San Francisco, Viral Diagnostics and Discovery Center were doing some research into patients with this virus, but I don't think they found anything.

Also, although I am not sure that the virus I caught is the same as yours, two supplements that work extremely well for the anxiety symptoms that are biochemically produced by the virus are:

N-acetylglucosamine 1000 mg twice daily
Flaxseed oil 15 ml (one tablespoon full) once daily

Most people hit badly by the Chinese HIV-like virus suffer very severe anxiety symptoms, as this virus seems to affect the brain (it seems to be a neurological virus). It is likely that the inflammation resulting from this virus is the thing that affect the brain — inflammation often promotes anxiety, depression, and other mental symptoms.

These two supplements may help eliminate the anxiety. Several people on my website found these supplements very effective.

 

[Hip]

By the way, coxsackievirus B and other enteroviruses can produce chest pain in four different ways:

Pleurisy (inflammation of the pleura = the lining of the lungs and chest).

Pleurodynia (aka: Bornholm disease or devil's grip: an inflammation of the intercostal muscles of the ribs in the chest, and the muscles attaching the diaphragm to the chest wall, in which any movement of the rib cage causes pain).

Myocarditis (infection of the heart muscle).

Pericarditis (infection of the heart lining).

 

[patient.journey]

This is the lab that Dr Chia uses all the time. Their coxsackievirus B test covers all 6 of the coxsackievirus B's, which are the most important (and nastiest) chronic enteroviruses, and their echovirus test covers many of the echoviruses.

​

I wanted to get tested myself, but unfortunately ARUP do not accept blood samples from outside the US....​

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First time hearing of this doctor ,, this news is bad for me too cause i live out side USA too ​

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I have emailed Hanchuchu and asked him to either comment on this thread, or to send you a private message via this forum. I am not sure he has much to offer in the way of advice, though.

​

​

One other bit of useful info: I heard that the University of California, San Francisco, Viral Diagnostics and Discovery Center were doing some research into patients with this virus, but I don't think they found anything.​

​

​

I wish he is a helpful person cause co he can give some advises,, thank you for trying please update me of this..​

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: I have an idea of information of those labs reseraches but the information is not clear as the website say​

Research on this emerging new "HIV/AIDS-like" microbe has been conducted at the Pasteur Institute of Shanghai and he Chinese Center for Disease Control (China CDC). However, scientists at these centers ​

have not yet determined the nature or identity of this pathogen, but have ruled out many possibilities."​

​

Am not sure if they means that they found something and that why they are ruling out many possibilities or they did not and they still searching ..​

​

Also, although I am not sure that the virus I caught is the same as yours, two supplements that work extremely well for the anxiety symptoms that are biochemically produced by the virus are:

N-acetylglucosamine 1000 mg twice daily
Flaxseed oil 15 ml (one tablespoon full) once daily

I will chick out for those supplements

By the way, coxsackievirus B and other enteroviruses can produce chest pain in four different ways:

I have the chest pain in the middle of my chest and Chinese this illness starts i had a high rate blood pressure and rate

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​

 

[Hip]

I thought that the findings of the medical doctor in China named Dr. Zhou Rong was interesting. He found that patients with the Chinese "HIV-like" virus had many herpes family viruses reactivated in their bodies. Most of us have several herpes family viruses in our bodies, but the immune system normally keeps these in check, so that these viruses remain dormant/latent. However, the fact that there is this reactivation in these patients is probably due to some immune suppression caused by the Chinese "HIV-like" virus.

I wonder if some of the symptoms of the Chinese "HIV-like" virus are in fact due to these reactivated herpes family viruses.

My blood tests showed I had reactivation (high antibodies) for cytomegalovirus, varicella zoster, and Epstein-Barr virus.

 

[patient.journey]

I thought that the findings of the medical doctor in China named Dr. Zhou Rong was interesting. He found that patients with the Chinese "HIV-like" virus had many herpes family viruses reactivated in their bodies. Most of us have several herpes family viruses in our bodies, but the immune system normally keeps these in check, so that these viruses remain dormant/latent. However, the fact that there is this reactivation in these patients is probably due to some immune suppression caused by the Chinese "HIV-like" virus.

I wonder if some of the symptoms of the Chinese "HIV-like" virus are in fact due to these reactivated herpes family viruses.

My blood tests showed I had reactivation (high antibodies) for cytomegalovirus, varicella zoster, and Epstein-Barr virus.

There was a question mark after this information in the website and i have the same one ,, saying that just after sex every thing reactivated is bullshit cause it wasnt the first time for me or you having it "WE CAUGHT SOMETHING THAT SUPRESS THE IMUUNE SYSTEM AM SURE"

Maybe this pathgons suppress the immunity system allowing these virus to do this mess

Mine too except i did not test for varicella zoster virus but today i did test for Parvovirus cause they say it have the ability to reactivate too

 

[Hip]

Maybe this pathgons suppress the immunity system allowing these virus to do this mess

Yes, that is exactly what I am suggesting: that the Chinese "HIV-like" virus is causing immunosuppression, and then this immunosuppression is allowing the herpes family viruses already existing in your body to reactivate.



It is worth trying the antiviral Valtrex (valacyclovir) for 3 to 6 months or longer. Valtrex is an antiviral for herpes simplex 1 & 2, varicella zoster virus, Epstein–Barr virus, and cytomegalovirus.

Quite a few people with ME/CFS use Valtrex daily and find it useful. Dosages for ME/CFS patients are typically around 1000 mg to 4000 mg a day.

I tried Valtrex myself, but I got anxiety as a side effect (increased anxiety is a known side effect of Valtrex for some people), so I had to stop taking this drug. However, you may be OK with Valtrex.

More info on Valtrex is here.

If you do get the anxiety side effect, another similar antiviral drug worth trying is Famvir (famciclovir). Famvir also works against the herpes family viruses, and has less side effects than Valtrex, but is more expensive.

More info on other antiviral drugs and immune system boosters (immunomodulators) is here.

 

[patient.journey]

Yes, that is exactly what I am suggesting: that the Chinese "HIV-like" virus is causing immunosuppression, and then this immunosuppression is allowing the herpes family viruses already existing in your body to reactivate.


It is worth trying the antiviral Valtrex (valacyclovir) for 3 to 6 months or longer. Valtrex is an antiviral for herpes simplex 1 & 2, varicella zoster virus, Epstein–Barr virus, and cytomegalovirus.....

I think i will go for this but its my last choice after i finish all other testing in my list with nothing appears on it cause if you read what doctors says about this ,, its only effective when people doesn't have any other infection or co infection other than herpes viruses so i will try to find the reason that is suppressing my immunity system before trying to treat there results ..

 

[taniaaust1]

Hi Tania,

it's interesting to read about your leaky heart valves. My cardiologist mentioned this to me a few years back, during a routine consult. The year after, he told me, either he overreacted the year before, or it got better. I was using Gc-Maf at that very moment, perhaps that improved my leaking heart-valve? Since then, it did not get worse. He noticed last year some other thing, nl. my main artery was 4.1cm, which of normal people is about 3cm. So, that needs very careful observation. He didn't know if that was normal with me. But, the literature says, when it reaches 5cm, I need a heart surgery, otherwise the artery might rupture causing death. The good news is, Belgian reasearchers found the genetic cause of this, and already have some meds to solve this, perhaps without even surgery.

Did you had that checked?

Best wishes,
OS.

I assume they checked my artery. They did look quite well at things.. the only thing they didnt look much at was my mitral valve (irronically the very thing in which often has issue in ME. They should of looked at that esp since i had indications of having a MPV), the areas on my test result werent filled in for that.

Some are born with leaky valves..and they assumed that was what it was I think... what they didnt do is get and look at previous tests (same tests), Ive had from an other heart place which at two different times didnt have that issue appearing previously. Hence I believe I wasnt born with it and it is a recently new thing (happened within the last few years).

 

[rlc]

Hi Omar 88, RE

i took Flucnazole for 2 weeks 150 mg but when i just stop it it came back again

How big was the improvement in your symptoms and what improved??

Flucnazole is a broad spectrum anti fungal, some of the fungal infections it is used to treat are a lot more serious then Candida, but would need a lot higher doses to cure the infection, some basic information on Flucnazole here http://en.wikipedia.org/wiki/Fluconazole Some of these fungal infections like Histoplasmosis can mimic the symptoms of ME so if you haven’t been checked for all the possible systemic fungal infections get your doctor to run the tests!

All infections have incubation periods, the length of time from contact to the start of symptoms. So if your illness was caused by contact with the CSW and the symptoms started in a week it greatly narrows the possibilities. So there is no way that your problems could be caused by the likes of EBV, or CMV because they have incubation periods of up to forty days, it can’t be HIV because it takes up to a year to show symptoms. Enteroviruses do fit because they have an incubation period of 4-7 days. It’s possible that it is not so much the contact with the CSW that is causing the problem, but the environment they were in. Someone else could have brought a fungus into the room and you have been infected with that. Most funguses have short incubation periods and fit with the length of time before you developed symptoms.

Keep in mind that it may be pure coincidence that your symptoms started after contact with the CSW, and make sure all other things are ruled out as well. It may not be an infectious illness at all.

Hope this helps best of luck with your search, you are very lucky to have doctors prepared to run all those tests for you!!

All the best

 

[patient.journey]

Hi Omar 88, RE


How big was the improvement in your symptoms and what improved??

Flucnazole is a broad spectrum anti fungal, some of the fungal infections it is used to treat are a lot more serious then Candida, but would need a lot higher doses to cure the infection, some basic information on Flucnazole here http://en.wikipedia.org/wiki/Fluconazole Some of these fungal infections like Histoplasmosis can mimic the symptoms of ME so if you haven’t been checked for all the possible systemic fungal infections get your doctor to run the tests!

All infections have incubation periods, the length of time from contact to the start of symptoms. So if your illness was caused by contact with the CSW and the symptoms started in a week it greatly narrows the possibilities. So there is no way that your problems could be caused by the likes of EBV, or CMV because they have incubation periods of up to forty days, it can’t be HIV because it takes up to a year to show symptoms. Enteroviruses do fit because they have an incubation period of 4-7 days......

The improvement was only on my tongue and am sure that your in formations are great cause they are true about EBV,CMV and HIV but i need to know what i caught nothing more for now , am thinking of entro viruses or some bacterial infection that could suppress the immunity system to run some test for ,, and i believe i caught sth that day cause i was full healthy before that

finally what type of fungal infections are you talking about ?!! can you please be specific

thanks for your informations

 

[Sushi]

Yes,

i took Flucnazole for 2 weeks 150 mg but when i just stop it it came back again

When I took this drug I took it for a couple of months at 200 mg. It seemed to help me a lot--with candida at least.

Sushi

 

[rlc]

Hi Omar 88, seeing as you have had some improvement even if it is minor I think it wise to find everything that that drug is used to treat, and test for these conditions just in case. Fluconazole according to this page http://en.wikipedia.org/wiki/Fluconazole is effective against these fungal diseases

Histoplasma capsulatum http://emedicine.medscape.com/article/299054-clinical

Blastomyces dermatitidis http://emedicine.medscape.com/article/296870-clinical

Candida http://emedicine.medscape.com/article/213853-clinical

Coccidioides immitis http://emedicine.medscape.com/article/215978-clinical

Cryptococcus neoformans http://emedicine.medscape.com/article/215354-clinical

And Epidermophyton, Microsporum, Trichophyton which all cause forms of tinea so are unlikely to be the cause of your problems.

There may be some other fungal diseases that it works for that are not listed on the page. On this page see http://www.rightdiagnosis.com/c/chronic_fatigue_syndrome/misdiag.htm it lists many of the diseases that get misdiagnosed as CFS it includes Histoplasmosis, Blastomycosis, Candidiasis and Coccidioidomycosis. So might be worth getting tested for them as you responded to the treatment that is used for them. It might be a case of right medicine wrong dosage. Each different fungus needs different amounts.

All the best