• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is it a new disease or its CFS ?

Messages
80
Thanks for the info Omar, did u try to get in touch with both dr who discovered hhv6? its very interesting indeed, sometimes I am discouraged, I look at my life before and I want to cry.....because of bad people who put me in the situation I got in today. I blame myself for having listened to the wrong people
 
Messages
76
Location
India / singapore
Hello guyz , how you all doing ?? Few days ago, in another forum with patients like us reported to back to the forum that the Mycoplasma plasma infection ,and one by one others too rested and found out they too have Mycoplasma. HOW MANY OF YOU HERE TESTED FOR MYCOPLASMA ?? . . . After their disclosure ,I'm searched a lot about Mycoplasma, ABOVE LINK PROBABLY TELLS US ABOUT THE PATHOGEN INFECTING US. Mycoplasma, has unique ability to lower the immunity by infecting WBCs ,that's what probably happening to us ...as we are getting susceptible to other viruses. It's can give APPEARANCE OF LATE STAGE AIDS PATIENTS, BY WASTING SYNDROME ,THAT TOO PROBABLY MATCHES . Furthermore Mycoplasma causes chronic Arthritis & joint pain that too matches . READ MORE ABOUT IT ,IN LINK I POSTED ABOVE TO KNOW ABOUT THE PROBABLE PATHOGEN EFFECTING PEOPLE HERE.
 

patient.journey

Senior Member
Messages
443
Ok guys it seems like you start to think its Mycoplasma, I thought about that before but am really not sure of that cause i took high doses of antibiotic in the first month and other patients did the same and they were not cured as it suppose to work with people with new infection !

Beside doctor Garlth Nicklson said Mycoplasma have an incubation period and its like 6 months were we had symptoms in couple of days after our exposures !

Some of Mycoplasma like genitalium, pneumoniae and Ureaplasma can make symptoms in couple of days and if that what some of us have it would be much easier than Mycoplasma fermentans to treat ,,,

Testing for it is available and you guys can use REDLABS by sending your samples there and you would have an answer beside there are other labs in prof Garlth website that you could use
 
Messages
76
Location
India / singapore
TAKING ANTIBIOTICS FOR FEW DAYS WONT HELP. IT NEEDS YEARS TO TREAT IT,IN OTHER POST 'EMERGENCY REPORT FROM CHINA' WE HAVE DISCUSSED THAT..... MOREOVER CHECK THE LINK I POSTED. ,THE SYMPTOMS REALLY MATCH WITH MYCOPLASMA,AMD THE CONTAGION ASPECT TOO.....SO MANY PEOPLE I FOUND POSTED LATER IN DIFFERENT FORUMS,ABOUT DISCOVERING THAT THEY HAVE MYCOPLASMA CHRONIC INFECTION
 

patient.journey

Senior Member
Messages
443
TAKING ANTIBIOTICS FOR FEW DAYS WONT HELP. IT NEEDS YEARS TO TREAT IT,IN OTHER POST 'EMERGENCY REPORT FROM CHINA' WE HAVE DISCUSSED THAT..... MOREOVER CHECK THE LINK I POSTED. ,THE SYMPTOMS REALLY MATCH WITH MYCOPLASMA,AMD THE CONTAGION ASPECT TOO.....SO MANY PEOPLE I FOUND POSTED LATER IN DIFFERENT FORUMS,ABOUT DISCOVERING THAT THEY HAVE MYCOPLASMA CHRONIC INFECTION


Taking years happens when you are infected for a year or more not in the first weeks as mycoplasma grow slowly so weeks are not enough for it to make all those symptoms and go systemic beside i read every thing you sent and more and the information are all the same every were !

Test for it and if you are positive update me

Best wishes
 
Messages
80
Taking years happens when you are infected for a year or more not in the first weeks as mycoplasma grow slowly so weeks are not enough for it to make all those symptoms and go systemic beside i read every thing you sent and more and the information are all the same every were !

Test for it and if you are positive update me

Best wishes

Omar for all the test u have done now, are u positive for anything?
 
Messages
76
Location
India / singapore
omar, i understand ur logic .....but, it is that if u get a large amount of mycoplasma,then your infection will be very strong and it needs years of treatment from the 1st week itself...large amount of mycoplasma will give wasting syndrome,but if some ppl get little from the infected person,then he will show very little symptoms.....mycoplasma is not eaisy to treat it lack a celll walll and hides within the cell ,altering your immune response.

anyway did u tested for mycoplasma ?? and any update on ur current situation ??
 

patient.journey

Senior Member
Messages
443
omar, i understand ur logic .....but, it is that if u get a large amount of mycoplasma,then your infection will be very strong and it needs years of treatment from the 1st week itself...large amount of mycoplasma will give wasting syndrome,but if some ppl get little from the infected person,then he will show very little symptoms.....mycoplasma is not eaisy to treat it lack a celll walll and hides within the cell ,altering your immune response.

anyway did u tested for mycoplasma ?? and any update on ur current situation ??

Never heard or read about such thing ! When you get a pathogen it doesnt matter how muc you got to show more or faster symptoms !
My information about incubation period are from Prof Garlth Nicklson and he is the best guy can talk about this as he is the Founder of the Bio Mycoplasma theory and he told me at least it would take 4-6 months for the Mycoplasma Fermentants to show symptoms !

As i said if we got Mycoplasma and it worked faster than ever for us we can test for it and i hope i see your result guys ASAP !!

Finally i tested for many stuff the only thing they found not normal are high herpes viruses titers for EBV,CMV and i would test for herpes 6,7 soon beside that i got over growth in candida albicans in mouth always and stool somtimes and I had positive culture for staph in semen and i would test for it in nose soon ,,,,
 
Messages
76
Location
India / singapore
There is thing called viral load,symptoms will be more if you have high viral load .....so amount does matter, anyways .


As I have stated in an earlier post here,that most of this hiv-like thing is actually either a HERPES VIRUS (HERPES4/6/8) or MYCOPLASMA or STAPH . Most of the people in different forums with this disease have either of these 3 or all of them ,as you too have herpes viruses,even in that chinese group 50% of them had EBV . May be this disease/syndrome is caused by these 3 .

I dont think hiv/htlv/something that dangerous has gone viral ,as the pathogen here is transmitted by casual contact.In that case ,not only us,thats dooms day for human race...so thats not the case.. so we must concentrate on this 3 ,may be treating this 3 wd solve the problem.
 

patient.journey

Senior Member
Messages
443
There is thing called viral load,symptoms will be more if you have high viral load .....so amount does matter, anyways .


As I have stated in an earlier post here,that most of this hiv-like thing is actually either a HERPES VIRUS (HERPES4/6/8) or MYCOPLASMA or STAPH . Most of the people in different forums with this disease have either of these 3 or all of them ,as you too have herpes viruses,even in that chinese group 50% of them had EBV . May be this disease/syndrome is caused by these 3 .

I dont think hiv/htlv/something that dangerous has gone viral ,as the pathogen here is transmitted by casual contact.In that case ,not only us,thats dooms day for human race...so thats not the case.. so we must concentrate on this 3 ,may be treating this 3 wd solve the problem.

Viral load increase while time goes on, when the virus enter the body the viral load would be so low and by time it goes high not the opposite !

More than 90% of the poplution got EBV & HHV6 and the incubation period for them after you get the virus is 4 weeks usually so i dont think this is our illness cause, the same for CMV !

If they are the cause something is reactivating them , maybe its the same case of what happens with HIV but here it is another virus ,,,
 
Messages
9
Absolutely, 110% agree: this is - in my opinion - without doubt a (highly) contagious *saliva-spread* virus. Hear me out:

(I spent an awful long time convinced this was some kind of STD, however, in the 4 months or so since my girlfriend and I started to get sick):

- 8 or so weeks ago I shared a cigarette with a work mate (don't smoke / just a one off). Within 48 hours she had a huge cold-sore outbreak round her mouth (although I've NEVER, ever had one) / complained of feeling incredibly fatigued / found it increasingly hard to get out of bed in the morning / irritable / pins and needles etc etc etc. Noticed a *huge* difference in her overall energy levels for a few weeks thereafter. Not sure how she is now (left my job) but will try and find out.

- 6 or so weeks ago: shared a drink (bottle) with a friend: that very NIGHT - 6 or so hours later - started complaining of painful pins and needles / muscle cramps. Caught up with him again a few weeks later: said he'd been sick since with 'night sweats, fatigue, sore throat, muscle ache'. Also had very dry / painful looking lips (but no coldsores).

- Bumped into his girlfriend recently (they live together): told me for the past month or so (since above exposure) she'd ALSO been having pins and needles, prolonged (severe) diarrhea, abdominal stabbing pains, muscle ache.

3/4 weeks ago: girlfriend and I shared a bowl of ice-cream with one of her friends. Next day: girlfriend's friend cancelled a day out they had planned because she was sick with 'flu-like symptoms' (not sure on the specifics / latest on this but again, will try and find out).

- Girlfriend's mother - recently - (who my girlfriend and I share meals with regularly) mentioned in passing the other day that she's been strangely / particularly tired of late. 'Haven't been sleeping well / keep waking up with PAINFUL PINS AND NEEDLES / numbness in limbs / ache in her wrist (struggles to carry things) / dry cough'. Also has a strange herpes-esque looking rash on her foot(?) Will keep an eye on / ask again how she is next time I see her.

In hindsight I probably shouldn't be sharing anything with anyone (my friends are incredibly 'sharey' though / often I don't have a choice - they'll just grab and drink from my bottles etc etc etc) but yeah. Contagious pins and needles anyone(?!) Saliva-spread. Without a doubt. (Also supported by all the Chinese forums / articles etc. Can't find the actual link right now but there was the guy who spat in his colleague's cup to see if it would spread?) Reminded me that six or so months ago a (Chinese) friend of mine (who'd recently been home) was complaining that she was feeling really really, crazily run down / fatigued and had been going for blood tests because of it. That was back when I was perfectly healthy BUT I do remember clearly on several occasions sharing food and drinks with her and it's after all of that that I began to get sick... Co-incidence(?) Hm. (To be honest maybe all of the above is co-incidence but... again: hm!) Have any of you noticed anything similar? Friends / family members / workmates getting sick?

Anyway, latest (symptoms-wise) on my girlfriend and I:

Personally - apart from the fatigue (unemployment / depression?) and leg ache - I'm more or less ok right now. Leg ache is bad though: constant dull ache / numbness / recurrent pins and needles / spasms / twitches / feeling that something's in there almost(?) Have tried exercise / bed-rest / supplements / dietary changes but the *only* thing that seems to even remotely help is firm massage to the back of my calf muscles. A lot of dark blue surface veins have popped up though which worried me quite considerably.

Actually lead me to see a (terrible) doctor yesterday who said that if it was anything to worry about (clotting for example) that lasted 6 months 'I'd almost definitely be dead right now'. Half-heartedly assured me 'it's nothing to worry about' but gave me a referral form for a 'peripheral vein doppler study' (leg ultrasound) just in case (clinical details: 'bilateral lower limb pain r/o DVT'). Gonna cost me several hundred dollars though so I'm not sure quite how soon I'll be getting that done. Sore throat / hives / peeling skin on feet / white tongue etc etc etc all more or less completely gone. Nails - both hands and feet - have become very brittle / transparent though. Same with my girlfriend's. Very strange. Keeping them extra short so I can try not to worry about it.

Girlfriend's (still) also struggling with quite a few other things, too. White tongue with red swollen taste buds still there; fatigue; dizzyness; twitches a lot in her sleep; frequent need to urinate. Most worrying is that her lips keep swelling (has been a month or so now) and become very dry / cracked / itchy. Had several blood tests yesterday which I think were mainly for allergies. Results in a week. Found out her recent ultrasounds and MRI scans came back all clear / normal though. It's not HIV / she's not pregnant / and she doesn't have a tumour at least - yay!

Anyway. Just checking in. Apologies for the rushed post - low concentration levels etc etc etc. Hope you guys are all well (or at least, as well as can be, considering)!
 
Messages
76
Location
India / singapore
Hi hivlikeV,

The symptoms you described here and mode of transmission are common with many of us hete and in other forums. It will clear up in 1or 2years ,but only to return after years. One guy posted that,his symptoms returned after 7 years with very low wbc & cd4 ,but could not get the follow up ,what happened after that ....Most of these people will have some health issues and symptoms even after recovering from the intial 1/2years.

But,i still dont think its hiv like something that gone viral,coz the way its trasmitted by casual contact,then huge percentage of population will get it or having it.... so lets just think about new herpes/new mycopladma or something ..and suddenly not hiv.
 

patient.journey

Senior Member
Messages
443
Absolutely, 110% agree: this is - in my opinion - without doubt a (highly) contagious *saliva-spread* virus. Hear me out:

(I spent an awful long time convinced this was some kind of STD, however, in the 4 months or so since my girlfriend and I started to get sick):

- 8 or so weeks ago I shared a cigarette with a work mate (don't smoke / just a one off). Within 48 hours she had a huge cold-sore outbreak round her mouth (although I've NEVER, ever had one) / complained of feeling incredibly fatigued / found it increasingly hard to get out of bed in the morning / irritable / pins and needles etc etc etc. Noticed a *huge* difference in her overall energy levels for a few weeks thereafter. Not sure how she is now (left my job) but will try and find out.!

Am sorry to hear your story, the way you are infecting people if that's 100% true is so bad but you should be sure if you are the cause !

There are two kind of people with such illness as i read, heard and talked too, first kind of those people who never infected any one unless with a sexual exposure or at least an oral sex, the second kind claims that they infect all people around them with saliva and normal contact and am really with the first story more as that is my situation !

I shared food with people and kissed some one, some of them had some flue like symptoms but they got rid of it and i cant be sure if i am the cause or not as any one can get flue any time of the year beside they are great now , maybe there immune is better than mine ! i cant be sure ..,

We are trying out best to find something hope you help with too ,,,
 

patient.journey

Senior Member
Messages
443
Hi hivlikeV,

The symptoms you described here and mode of transmission are common with many of us hete and in other forums. It will clear up in 1or 2years ,but only to return after years. One guy posted that,his symptoms returned after 7 years with very low wbc & cd4 ,but could not get the follow up ,what happened after that ....Most of these people will have some health issues and symptoms even after recovering from the intial 1/2years.

But,i still dont think its hiv like something that gone viral,coz the way its trasmitted by casual contact,then huge percentage of population will get it or having it.... so lets just think about new herpes/new mycopladma or something ..and suddenly not hiv.

Low CD4 and WBC ?! who is this guy ? and could we talk to him to see his case ?

Such news are not good even if its not our case
 
Messages
55
Am sorry to hear your story, the way you are infecting people if that's 100% true is so bad but you should be sure if you are the cause !

There are two kind of people with such illness as i read, heard and talked too, first kind of those people who never infected any one unless with a sexual exposure or at least an oral sex, the second kind claims that they infect all people around them with saliva and normal contact and am really with the first story more as that is my situation !

I shared food with people and kissed some one, some of them had some flue like symptoms but they got rid of it and i cant be sure if i am the cause or not as any one can get flue any time of the year beside they are great now , maybe there immune is better than mine ! i cant be sure ..,

We are trying out best to find something hope you help with too ,,,

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

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

Sherezade

Guest
Messages
97
Do you guys realize that if in fact this pathogen is transmitted by saliva is just a matter of time that the whole world gets infected? I don`t mean to be an alarmist, but we are talking of a huge sanitary crisis worldwide.
I've infected many many people - just by hugging them. Now I don`t even think of kissing someone, or let anyone to drink from my glass. There is something going on and the only thing we've got from doctors, scientifics and governments is denial, negligence, and offenses. What could we do?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Do you guys realize that if in fact this pathogen is transmitted by saliva is just a matter of time that the whole world gets infected? I don`t mean to be an alarmist, but we are talking of a huge sanitary crisis worldwide.
I've infected many many people - just by hugging them. Now I don`t even think of kissing someone, or let anyone to drink from my glass. There is something going on and the only thing we've got from doctors, scientifics and governments is denial, negligence, and offenses. What could we do?

Hi Sherezade,

I know you are concerned and worried, but I really think it is very unlikely that the whole world will get infected. There have been epidemics throughout history but none has infected the whole world. Yes, some seem to have something that is infectious but most do not seem to and even the outbreaks of "whatever this is" have not spread very far. Clusters have been happening for decades but no one has ever determined the causes of these cluster outbreaks--but they have always self-limited.

Yes, it is important to continue to take care of yourself and those around you with reasonable precautions, but worrying too much is likely to impact your health even more! You may get some of the answers you need when you are able to carry out your plan to see a good doctor. There is a lot of hope in that.

Wishing you the best,
Sushi
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Do you guys realize that if in fact this pathogen is transmitted by saliva is just a matter of time that the whole world gets infected? I don`t mean to be an alarmist, but we are talking of a huge sanitary crisis worldwide.
I've infected many many people - just by hugging them. Now I don`t even think of kissing someone, or let anyone to drink from my glass. There is something going on and the only thing we've got from doctors, scientifics and governments is denial, negligence, and offenses. What could we do?

Yes but not everyone seems to be susceptable and Ive seen one who caught something from me.. his body could fight it and keep recovering after every time I infected him. Where are my sister who drank out of my glass remains sick.. I think genetics are strongly involved too.

I do not share my glasses etc but I dont see it as a big deal thou I try to keep others from drinking out of my glasses (thou my little almost 2 year old granddaughter did recently get hold of my glass and drink for it and I wasnt very happy at all about that one). Just try to be careful (I never kiss family anywhere close to the lips etc. All my boyfriends (approx 3 others) except the one..havent been susceptable to this illness).

I suggest to research ME outbreaks which go back to the 1950s some even before..maybe that would make you feel better.. as there still isnt many out there with ME thou some of those outbreaks seem to have been highly infectious. eg Royal Free Hospital outbreak.. and the Lake Tahoe outbreak etc etc.

If we are going to really worry about something like this.. bird flu, ebola or the swine flu undergoing a dangerous mutation is probably more likely to cause humanity big issues in future.

The stuff around now has been around a long time... Keep an eye on your anxiety levels as the anxiety can drag your health down.