Is it a new disease or its CFS ?

[patient.journey]

My experience / something I posted over on ehealthforum earlier in the week:

"First post. Been trying to resist for a while now but ...just can't any longer.

10th week 'post-exposure' update (here only):

Sore throat / fatigue / pins and needles etc etc etc continue. Now suffering from extreme back ache; literally feels like my right shoulder blade is actually burning. On fire. Constantly. Literally can't deal with this anymore. Going back to bed.

Am sorry to hear your story ! HIV doesnt cause remaining symptoms, the virus symptoms stay for 2-3 weeks and go and usually people never know they have it except after 10-15 years when their CD4 start to decrease and their immune system stop working good beside people with HIV knows what they have and they could have treatment for it at least and would live for 30-40 years on it and some of them never have symptoms and there immune system will work always good without anything !!

You and your GF would get better soon but would still have some symptoms as we do, the first 3-6 months are the worse and i can help you telling you to try boosting your immune system taking good vitamins and good supplements and if you can find natural supplements for antiviral that would help to get better soon for now !!

 

[Wifi123]

Hi 8eraser8, I meant to mention that the general blood test for mycoplasma is a bit involved, but a friend who is a pathologist and a naturopath, and he conducted an immediate blood test on, placed it on the magnifying screen and you could see the mycoplasma. He said that he used a special dye that had been used decades ago that isn't used these days to identify the mycoplasma.

I believe that these days there is no cure for most illnesses, after all, if you cure the world's populaion then someone will be put out of business....

 

[patient.journey]

I’ve been suffering my illness since 1969, after returning from the Vietnam, and now after suffering for 43 years, I did discover during a blood test that I had “mycoplasma” in my blood. During my time in Vietnam I was sprayed with Agent Orange, encountered all the dramas of war, and worked amongst the most potent and sophisticated electronic and electrical equipments and devices to be used during war.

For the past five years I have been suffering extreme mouth disorder that burns, tingles, and aches 24/7, and become severe during the night causing restlessness. The top row of my teeth burns, tingles, and aches 24/7, and is severe during the night. While I had amalgam fillings in my teeth the condition was extremely severe, and I was advised by a holistic dentist to remove the amalgam fillings as it was causing an “oral galvanic affect” in my mouth. After he explained it to me, it was identical to what I was suffering.

The oral galvanic effect is in fact the same process that you find in a battery, which is produced in the mouth when mixed metals are placed there, such as: fillings, crowns, or bridges, or a combination of them. These dental metals mix with saliva, which has an acidic pH, which create this effect. Measurable amounts of electrical voltage and current are produced, and create electromagnetic radiation and fields (EMR and EMF), which are detectable on an EEG or multimetre. (If we think back to our science lessons at school we will remember that an electro motive force across two metals immersed in an electrolyte will produce an electrical voltage and current that then produces EMR and EMF. (Sadly, today we are totally immersed in those electro motive forces (electrosmog) by the wireless, electronic and electrical technology; and from electrical power lines.)

Am sorry to hear your case and your years of suffering with this illness, hope we can help as much as we can !

Why you dont start antibiotic treatment for Mycoplasma and what type of this microbe do you have ?

 

[8eraser8]

I believe maybe you should check also for mycoplasma infection, and your vitamin D levels, I had those two indicators, apart from that I do not know what to search. If we have the same problem, you should be mycoplasma positive and low vit d levels.

Did you do any tests that gave some indication?

Who else do you know on the forum who would share the same infection?

I read your posts that you were able to talk to the chinese scientist,

I know that the shanghai pasteur isolated one microbe/ virus, do u have an update on that?

I wonder if the new aids http://www.thedailybeast.com/articles/2012/08/26/new-thai-taiwanese-syndrome-is-not-aids-2-0.html is the same thing we caught?

This article is not telling the whole truth, simply because what was released is not the complete truth, I believe many people are catching this new virus, and no one is bothering about it.

Omar and all those in the same boat, so many new cases of this new infectious agent is happening, we really need the acute phase blood to be able to know what virus this is.

Do u think the chinese authorities would have kept the blood of an acute phase patient?

If we can get this blood, it would take only 3 months to be able to identify this new pathogene

We need to know what virus it is, so to eventually be able to find a treatment for this. I am only 32,whats your age?

In the chinese newspaper translation, I saw that most of those infected, lived only around 8-10 year after infection.

We need to group ourselves, time is limited

Am sorry to hear your story !

Yeah the Chinese people wanted to infect people with this virus hoping some other countries would help and it seems that you got that way !

Countries are spending money for weapons hundred times more than health because of war and gun lobbies who i would like to call them mafia and as you said couple million of people less wont hurt as earth got enough number of people as they think !!

Good people and good doctors are there and what we are doing now would help us, some CFS treatments may help us cause we are in the same category of past or acute viral infection and that why we are here beside some CFS/ME patients are like us but they dont know,,,

Mycoplasma would be a test that you could run but in my opinion am thinking of a virus more than a microbe something like HIV or what ever is playing a role in AIDS disease that was changed or manufactured for a reason or another ! maybe as a vaccine that didnt work for HIV and maybe to its the new disease that would make people afraid from having sex as HIV didnt work well because its hard to transmit !

 

[8eraser8]

I believe there must be a cure, those who developed those microbiological weapons, must have the cure for the very little people or kept for themselves.

What strain of mycoplasma do u have?

Hi 8eraser8, I meant to mention that the general blood test for mycoplasma is a bit involved, but a friend who is a pathologist and a naturopath, and he conducted an immediate blood test on, placed it on the magnifying screen and you could see the mycoplasma. He said that he used a special dye that had been used decades ago that isn't used these days to identify the mycoplasma.

I believe that these days there is no cure for most illnesses, after all, if you cure the world's populaion then someone will be put out of business....

 

[patient.journey]

I believe maybe you should check also for mycoplasma infection, and your vitamin D levels, I had those two indicators, apart from that I do not know what to search. If we have the same problem, you should be mycoplasma positive and low vit d levels.

Did you do any tests that gave some indication?

Who else do you know on the forum who would share the same infection?

I read your posts that you were able to talk to the chinese scientist,

I know that the shanghai pasteur isolated one microbe/ virus, do u have an update on that?

I wonder if the new aids http://www.thedailybeast.com/articles/2012/08/26/new-thai-taiwanese-syndrome-is-not-aids-2-0.html is the same thing we caught?

This article is not telling the whole truth, simply because what was released is not the complete truth, I believe many people are catching this new virus, and no one is bothering about it.

Omar and all those in the same boat, so many new cases of this new infectious agent is happening, we really need the acute phase blood to be able to know what virus this is.

Do u think the chinese authorities would have kept the blood of an acute phase patient?

If we can get this blood, it would take only 3 months to be able to identify this new pathogene

We need to know what virus it is, so to eventually be able to find a treatment for this. I am only 32,whats your age?

In the chinese newspaper translation, I saw that most of those infected, lived only around 8-10 year after infection.

We need to group ourselves, time is limited

I didnt find the information of isolated virus here but i already post such a information you could chick before,,

The information about years people would live need a prove cause stories of getting better were there too and we dont need people to get afraid if the information are not sure !!

Am 24 and yes we should do what you said that why we are trying to join more people here as we can make something big to help us !

 

[8eraser8]

Hi Edward
I am really sorry to hear ur situation, I am also in the same problem, I read your previous posts

Hows things going, concerning the CD4 CD8, CD 3, ?

Have u been able to keep your acute phase blood? or did the labs keep it? or they kept for your gf?

If u have this blood, we can find out what virus it is and hopefully can identify and treat it, we need next generation sequencing to test this acute phase blood, else it will not work

In fact it is the only thing we can do. I used to try to follow the same path, I was one of the first in this forum with the symptoms, you can check my old posts written as madday. A also spent lot of money for the specialists and tests. My symptoms were very severe, during 4 months I couldn't work, hardly walk, and because of HUGE Brain Fog i couldn't think properly, and because of vision problems I couldn't see properly, because of extensive night and days sweats I couldn't participate in normal live. Nobody helped. Also tried to make a net of the people with the same symptoms.

After 4 years I was able to live quite normally and ignore the minor problems. Now I have kind of reactivation of the pathogen inside me.

Could you write me in details how and when it has started in your case and the chronological detailed list of yours symptoms and progress of your disease? You can check me at the username "madday" in hanchochu thread.

Have you met any doc who treats you seriously? I don't mean the expensive doctors from kind of private clinics who can pretend they try to help but the only thing they care is your money.

How old are you and where you from?

My symptoms were almost 100% the same to what people with Chinese HIV-Like virus describes, including short incubation time, first symptoms. Big difference is that I haven't passed it to anyone on the basics of normal daily habits, nor by kissing or drinking from the same glass. Anyway I think more than 70% of them says they got it by sexual intercourse. More les the same statistics is as for HIV patients.

It all started with weakness and constant mid high fever 37,5 and nothing could drop it, I had this kind of fever for a few years 3 or 4, but as starting from the second year it used to drop down to 35 in the late evenings and it was accompanied with the sweats, but it was a big relief for me anyway.

My girlfriend can't recover from flue like illness since 2 months, has developed weakness, often severe night sweats, she lost smell and has enormous pain in knee-joint. Still she says I am stupid and it has nothing common with my condition as I spoke to so many doctors and have made so many blood tests and all of them assured me I am completely healthy young man with not any reasons to worry about. I want to believe she is right but I can' somehow. It is true my symptoms were different at the beginning and much more severe so I have some hope it might be something different, and she would not develop the same severe syndrome as me.

What a nightmare!!!

Best Wishes to all!


P.S. What do you think to make a list of the doctors who misdiagnose us or ignored our problems? It is also their big responsibility the disease spreads and they put into this condition more and more new innocent people!

We could do it like this:
Establish a new tread "Ignorant Doctors"
Each of as would make just one post to describe its history and symptoms, and then by "editing" we could add new doctors whom we asked for help. And of course apart we can make a list of doctors who are eager to help and try to find out what is going on with us (if any).
I know it is kind of desperation act but the desperation is the only one thing which left.

 

[Katherine]

Am sorry to hear your story !

Yeah the Chinese people wanted to infect people with this virus hoping some other countries would help and it seems that you got that way !

Countries are spending money for weapons hundred times more than health because of war and gun lobbies who i would like to call them mafia and as you said couple million of people less wont hurt as earth got enough number of people as they think !!

Good people and good doctors are there and what we are doing now would help us, some CFS treatments may help us cause we are in the same category of past or acute viral infection and that why we are here beside some CFS/ME patients are like us but they dont know,,,

Mycoplasma would be a test that you could run but in my opinion am thinking of a virus more than a microbe something like HIV or what ever is playing a role in AIDS disease that was changed or manufactured for a reason or another ! maybe as a vaccine that didnt work for HIV and maybe to its the new disease that would make people afraid from having sex as HIV didnt work well because its hard to transmit !

Hi, Omar Am not completely familiar with this whole story but what help were the Chinese alleged to have been seeking, and for what exactly?

 

[Wifi123]

Am sorry to hear your case and your years of suffering with this illness, hope we can help as much as we can !

Why you dont start antibiotic treatment for Mycoplasma and what type of this microbe do you have ?

I have had so many antibiotics over the years that they don't work. My friend prescribed me a natural ingredient made out of marigold plants, a liquid, which you had to spread over your skin (arms and thighs), it was very messy and you couldn't wear any clothing as it stained your clothing. After a month I had had enough of the messy procedure, but I was admitted into hospital for major heart surgery that appeared out of nowhere. I didn't continue the treatment while recovering from the surgery, and began to wonder if it had caused my heart problem.

I have found my symptoms debilitating as they are a combination of ME, CFS, FMS, and EHS symptoms. I have basically accepted what I have and do my best to survive through supplementation, and diet; and protection.

 

[Wifi123]

I also believe that the symptoms have become worse through far too many MRIs, catscans, and PET x-rays. I have always thought that it was like radiation poisoning, but the poor memory and brain fog is one thing that I find hard to cope with.

 

[patient.journey]

Hi, Omar Am not completely familiar with this whole story but what help were the Chinese alleged to have been seeking, and for what exactly?

Didnt get your question ?!

 

[patient.journey]

I also believe that the symptoms have become worse through far too many MRIs, catscans, and PET x-rays. I have always thought that it was like radiation poisoning, but the poor memory and brain fog is one thing that I find hard to cope with.

So what type of Mycoplasma did you have ?

 

[Katherine]

8eraser8 wrote:

My nightmare start on the 19th february 2012, while on a business trip to guangzhou, china, I was injected with contaminated blood. After reading posts here and on the internet, I believe it was those crazy infected people in china with HIV negative Aids. who did this, because my symptoms totally reflect this. They state that they wanted many people to get this so international countries would help. They did not think properly, as someone said, only if the famous and powerful is infected with this, that the international centers will take time to research this new disease.

Yeah the Chinese people wanted to infect people with this virus hoping some other countries would help and it seems that you got that way !

It's ok Omar, I thought you were talking about the Chinese govt infecting people. In light of the 1st comment all is clear

 

[Wifi123]

So what type of Mycoplasma did you have ?

I didn't take it any further, because the medicos here in my area don't want to know about it.

I assumed that it was a very involved test, as my friend advised that they don't use the dye he uses and they miss the mycoplasma.....

 

[Edward]

My cd4/cd8 were low 3 months after the infection but the ratio was ok. cd4 were 545 and cd8 sth like 300.
I don't have any acute phase blood done, didn't know it exists.

My condition for the moment has changed a bit: instead lower body temp I have constantly low grade temperature 37,3C just as at the begining of the infection. I am weak, tired, lost apetite can't sleep. Feel like I had kind of CNS infected.

Hi Edward
I am really sorry to hear ur situation, I am also in the same problem, I read your previous posts

Hows things going, concerning the CD4 CD8, CD 3, ?

Have u been able to keep your acute phase blood? or did the labs keep it? or they kept for your gf?

If u have this blood, we can find out what virus it is and hopefully can identify and treat it, we need next generation sequencing to test this acute phase blood, else it will not work

 

[patient.journey]

My cd4/cd8 were low 3 months after the infection but the ratio was ok. cd4 were 545 and cd8 sth like 300.
I don't have any acute phase blood done, didn't know it exists.

My condition for the moment has changed a bit: instead lower body temp I have constantly low grade temperature 37,3C just as at the begining of the infection. I am weak, tired, lost apetite can't sleep. Feel like I had kind of CNS infected.

What about the time before the reactivation ? were you good ?!

Did you take any type of treatment or supplements in your seven year ? and what worked god with you ?

 

[hivlikevirus]

Check this - amongst all of the other forums - religiously / daily but so tired and actually have to struggle to think of words so much so that I just don't even bother anymore. Almost embarrassed at myself when it comes to sentence structure / forum posting these days. Mind. Fog. Anyway. Will keep this short.

hivlikevirus Hand, foot & mouth disease is something that comes to mind. Children often get this. Can be mild, or can be severe...even with encephalitis-type symptoms.

Caused by Coxackie A, also can be caused by Enterovirus-71.

http://en.wikipedia.org/wiki/Hand,_foot_and_mouth_disease

(not to be confused with Foot & Mouth Disease)

Wow. First diagnosable / thing-with-a-name I've read in a long time that actually sounds ...possible (symptoms are definitely all there). Will mention it to the next doctor I see. That wiki article says symptoms are usually mild and only last a week though(?) My girlfriend and I are soon approaching 11. Speaking of doctors:

Its very important you keep your AND That of your girlfriend blood from this acute phase, I had the same infection as you, but no one told me to keep this blood, take 10-20 tubes from your blood. 10 Tubes in EDTA, have them freezed in cryotech or freezed in liquid nitrogen, 10 other tubes of blood in another tubes and have them freezed also

Then I can help you in identifying this infection, then only way to do this is to have this acute phase blood analysed by next generation sequencing, I have the virologist numbers already.

SO I REPEAT 20 TUBES OF YOUR BLOOD AND THAT OF YOUR GF NITROGEN FREEZED, do not wait, after the acute phase it is too late to identify the virus !!!

Let me know when you get this message

Spent ALL of Christmas Eve (and an entire tank of petrol) driving from hospital to hospital trying to find somewhere with an open clinic / Infectious Diseases Unit. They are ALL closed until the 7th / 8th / 9th of January. Surely the acute phase will have passed by then?

In other news: maybe it's coincidence / placebo / whatever but since taking daily (13.8g) Green Tea capsules my pins and needles seem to have completely stopped. Or - at 10 weeks - maybe I've just finally stopped seroconverting. Gonna back off the obsessing a little until I've definitely completely ruled out the big H. (Terrified all over again.) Two more weeks.

(Sore throat is particularly bad all over again though. As is the ridiculous sudden weight gain around my waistline. I actually look pregnant right now (and have done for a few days - regardless of diet). Have also been getting strange white-heads on my legs which burst, get INCREDIBLY itchy and then leave a dull reddish / yellow almost bruise-like rash for a few days(?) Again, just gonna try and ignore all this for the next two weeks though. Hm.)

 

[patient.journey]

We should start thinking of what can help us right now if we still cant find the cause of our illnesses so we can stand and fight more and maybe we could be cured !!

After reading so many studies of what common medicines in treating both HIV and CFS/ME i found that LDN and GcMaf are the best choice ! as they were used with or without Antiretrovirals and they showed that they work good !

Those two treatments are not toxic and they help the immune system in their battle against viral infections and i think that combination of both them would be very good for us after what i saw they did with HIV and AIDS patients and other viral infections like herpes viruses, Hepatitis B,C ! but sure we need a doctor in this for his opinion in doses and every thing else ,,,

I believe we got a viral infection as i was on heavy doses of antibiotics since the first month of my illness so i could cured it and manage it with 3 weeks of heavy doses of 3 different AB’s, beside that what was the information i found about a similar virus sequencing to HIV that was found in Chinese patients in Chinese news papers !!

I dont want to get into the theories of why they stop searching and were that virus go, cause if that what is causing our illness others will find it soon if we kept digging

Your trials guys will be helpful and your opinions too and what ever more thoughts to help us would be great so please share anything with us .

 

[Sushi]

We should start thinking of what can help us right now if we still cant find the cause of our illnesses so we can stand and fight more and maybe we could be cured !!

After reading so many studies of what common medicines in treating both HIV and CFS/ME i found that LDN and GcMaf are the best choice ! as they were used with or without Antiretrovirals and they showed that they work good !

Those two treatments are not toxic and they help the immune system in their battle against viral infections and i think that combination of both them would be very good for us after what i saw they did with HIV and AIDS patients and other viral infections like herpes viruses, Hepatitis B,C ! but sure we need a doctor in this for his opinion in doses and every thing else ,,,

I believe we got a viral infection as i was on heavy doses of antibiotics since the first month of my illness so i could cured it and manage it with 3 weeks of heavy doses of 3 different AB’s, beside that what was the information i found about a similar virus sequencing to HIV that was found in Chinese patients in Chinese news papers !!

I dont want to get into the theories of why they stop searching and were that virus go, cause if that what is causing our illness others will find it soon if we kept digging

Your trials guys will be helpful and your opinions too and what ever more thoughts to help us would be great so please share anything with us .

Re: LDN and GcMAF, both are fairly safe to take on your own--provided you look out for a few things. LDN--it is best to start with a very low dose to see how you respond--like .5 mg and work up very slowly over a period of months.

GcMAF: the main difficulty people have is with inflammation. If possible it is good to at least test your inflammatory cytokines--particularly IL 8, as, if it is high you would likely have trouble with GcMAF. Again, for safety, it is a good idea to start with a low dose, say 10 to 25 ngs. ME patients can be very sensitive but your unknown condition might respond differently. That is even too high for some ME patients (particularly if they have high inflammation or Lyme or Bartonella).

On the other hand, HIV patients seem to do better with 100 ng doses. So there are some unknowns--particularly when you don't know exactly what infected you.

Best wishes,
Sushi

 

[patient.journey]

Re: LDN and GcMAF, both are fairly safe to take on your own--provided you look out for a few things. LDN--it is best to start with a very low dose to see how you respond--like .5 mg and work up very slowly over a period of months.

GcMAF: the main difficulty people have is with inflammation. If possible it is good to at least test your inflammatory cytokines--particularly IL 8, as, if it is high you would likely have trouble with GcMAF. Again, for safety, it is a good idea to start with a low dose, say 10 to 25 ngs. ME patients can be very sensitive but your unknown condition might respond differently. That is even too high for some ME patients (particularly if they have high inflammation or Lyme or Bartonella).

On the other hand, HIV patients seem to do better with 100 ng doses. So there are some unknowns--particularly when you don't know exactly what infected you.

Best wishes,
Sushi

What doses of LDN people start with Sushi and how much up does it go every month and how much is the final dose people reach ?

People who takes GcMAF do it in two ways injections and yougrts so which one are you taking about and what doses do they both come with and what do you think is better ?

Thanks Sushi xox