Is it a new disease or its CFS ?

[Survivor84]

urraco2012 oh my when trying to learn about test, it is so complicated. I was just looking for a basic answer. I want to find out more about gene testing. Thank you for replying. What do you think about mycoplasmas with gp120?

 

[ronR]

urraco2012 what iam wondering is how can you know if you carry the gene not the virus? It said women were found to carry proteins or genes, but tested negative. Some of these people who were exposed to HIV+ people ended up carrying the gene, not the virus. This brought up the question as wether than can still transmit? So what I want to know is if I were a gene carrier or protein carrier, how could I test for that? It said it was in biopsied tissue from some of these patients. I am not by any means trying to scare anybody, I just want yo rule out as many possibilities as possible.

Even if someone have genes/proteins ,but not the entire hiv virus .....I wonder what kind of damage it would cause ??

 

[Survivor84]

According to that article it was still able to effect the cd4s
.I would like to find out how you can test for that, just for a peace of mind. I know the article is old, but it was very interesting. The mycoplasma that nicolson found had a piece of HIV Gene envelope, but it was not the virus. It provided the symptoms though. Gp120, wonder how someone can test for genes? Like I said I'm not trying to scare anyone

 

[Shoesies]

According to that article it was still able to effect the cd4s
.I would like to find out how you can test for that, just for a peace of mind. I know the article is old, but it was very interesting. The mycoplasma that nicolson found had a piece of HIV Gene envelope, but it was not the virus. It provided the symptoms though. Gp120, wonder how someone can test for genes? Like I said I'm not trying to scare anyone

Treedot, after doing a ton of research I see that many are trying to discredit the nicolson finding of piece of HIV gene envelope. Frankly, at this point I trust no one.

 

[Survivor84]

Shoesies I definitely agree, I do think anything is possible though. I would like to rule out as much as possible. Do you know anything about testing of gene's?

 

[Sherezade]

There are some facts about HIV that we all should know, and maybe that will ease our minds about that subject:

1) HIV is a virus very difficult to transmit. Many people have been in risk of getting it, by having several unprotected contacts with hiv positives and still they didn't get it. Yes, it can be transmitted in just one risky contact, but it's a very uncommon situation and it's related maybe with the presence of another std's like active genital herpes.

2) ARS symptoms happen to about 70% of people infected. Usually happens between 2 and 4 weeks after infection. When ARS does ocurred is a Mononucleosis-alike illness (it has nothing to do with the common flu). The main symptom of ARS is a very high fever, and many times, swollen gland nodes in neck, groin and armpit. The lymph nodes get huge, so big that are noticiable without touching. I wonder how many of us actually got a fever and huge lymph nodes. In my case i had very low fever, and little swollen lymph nodes.

3) The rest, 30% of people infected with hiv don't feel a thing or the symptoms are so mild that can pass unnoticed. After ARS, the symptoms dissapear and don't show up until many years later when the inmune system is severaly compromised.

4) So, ARS symptoms are not permanent. They go away after two or three weeks and the person feels good, maybe the better he/she has felt ever in their life.

You have to realize that we are all symptomatic after very low risk encounters. The most important thing is that we all have negative hiv tests after the window period. Aren't all these arguments enough to rule out hiv?

I edit to add that all those thing were explained to me by the best hiv specialist in my country. He's been working with hiv patients since 1981, when they didn't even know too much about the virus. And he told me i can absolutly rule out hiv.

 

[Shoesies]

Shoesies I definitely agree, I do think anything is possible though. I would like to rule out as much as possible. Do you know anything about testing of gene's?

Unfortunately, I am early in my journey and I just know what I am reading now. Few labs seem trustworthy. It sucks.

 

[Survivor84]

Sherezade yes our test are negative which is great, but what I'm trying to say is can it be possible that maybe this is the same or similar mycoplasma with gp120 HIV gene that nicolson found. Yes it is very scary to think this has any relation to HIV, and it may very well not be. But if it is modified or bound with a mycoplasma, transmission can be easier. Personally I would like to rule that out for myself, for my own peace of mind. I am sorry if I put fear in anybody. I've been scared long enough with lack of an answer and at this point just want to rule out any possibility of HIV, because that is my own biggest fear.

 

[Survivor84]

Shoesies yes its sad to think that what appears to be our last resources, such as labs that we invest time and money in, are not trustworthy. I believe in time justice will come about with persistence of suffers.

 

[Survivor84]

Has anybody here had a western blot for HIV after exposure?

 

[ravikumarsu]

Good Luck Omar. I have tested Western bolt , PCR,P24 antigen, and normal HIV antibody test many times. All negative.
It looks like unknown virus or a 4th specious (not virus, mycoplasma, Bacteria). Mycoplasma infections looks like an opportunistic infection after the infection of this pathogen. I have severe arthritis now. My all the joints are paining, but all arthritis tests are negative.

 

[wyomingscared]

Members, why are we so fixated on hiv or unknown viruses? After reading about enteroviruses, symptoms, 71 different types, how it is transmitted and viral meningitis.

An enterovirus that broke the blood brain barrier and caused chronic viral meningitis seems more plausible than the other theories so far. At least for me.

My dr is running one more test and then will send me to an infectious disease dr now.

Overall , I am at an 8 out of 10 . Mostly just worried about lt heart damage.

If my new dr finds anything will let you know.

 

[ukxmrv]

Wyomingscared,

Don't think that anyone is fixated on HIV but as new viri are found patients can in some cases test positive - like HHV6.

Not all the ME patients tested with the VP1 protein test in the late 80's were positive for an entrovirus and because all these decades later we don't have a reliable treatment.

Because of the number of different viri and bacterias being implicated here. We don't know which one is making us sick, the whole group or something else and why.

I'm all for more research into entroviri. Dr Ramsay and the early ME docs were looking into that area with the science that they had at the time.

At the moment it's "just" another virus that some patients are infected with. I'd like to know why I keep testing positive with different ones and more importantly how to treat them. It's been nearly 30 years of testing and trying different things for me.

If you do have an entrovirus how do you know it's not the only one you have? What happens when you treat it and you are sicker or still the same.

Too many unanwered questions for all of us and now all these decades later not knowing what is a the cause and how to get well again. That will keep us talking about possibilities.

 

[urraco2012]

Wyomingscared,

Don't think that anyone is fixated on HIV but as new viri are found patients can in some cases test positive - like HHV6.

Not all the ME patients tested with the VP1 protein test in the late 80's were positive for an entrovirus and because all these decades later we don't have a reliable treatment.

Because of the number of different viri and bacterias being implicated here. We don't know which one is making us sick, the whole group or something else and why.

I'm all for more research into entroviri. Dr Ramsay and the early ME docs were looking into that area with the science that they had at the time.

At the moment it's "just" another virus that some patients are infected with. I'd like to know why I keep testing positive with different ones and more importantly how to treat them. It's been nearly 30 years of testing and trying different things for me.

If you do have an entrovirus how do you know it's not the only one you have? What happens when you treat it and you are sicker or still the same.

Too many unanwered questions for all of us and now all these decades later not knowing what is a the cause and how to get well again. That will keep us talking about possibilities.

ukxmrv,
I think what Wyomingscared say is true. Some of us have fixated in HIV for long, because our illness started after some sexual exposure (my case) and because my symptoms matched perfectly with the acute retroviral syndrome. I´m not thinking much in hiv now, but, have you been suffering this for 30 years? can you tell us how you think you caught this or you think this is something autoinmune for you?

 

[ukxmrv]

Hi Urraco,

I am really sorry that people have been scared for so long about HIV. That's a terrible position to be in.

HIV/AIDs wasn't around when I first became ill and it wasn't after a sexual exposure. Some of my friends did come down with HIV/AIDs in the first wave but these were not friends I had sexual relationships with. As each new virus has been discovered I have been tested and for some I am positive and some negative. All my HIV/AIDs tests have been negative plus HTLV.

One of the doctors looking at an 80's outbreak did find some signs of retroviral activity and I have hoped for years that someone would follow up this work to see if it could be replicated. That's what I was hoping would happen with XMRV but it was only superfically looked at (other retroviral activity). Would still like to see this happen. There are other people with ME in my family and that includes in-laws, so an infection could be possible.

When I became ill it was a recognised outbreak so felt a little different to a lone person after a sexual encounter. I was able to learn about ME quickly and meet others with the disease. There were still ME-knowledgable doctors around. I got to see people with HIV/AIDS die and they were very different to my own disease experience. It was a tragedy for them and for those of us left behind to suffer.

A retrovirus could explain why I have so many co-infections. It could be another undiscovered virus or one that we know about (like an entrovirus) but don't know how to treat yet. I can't describe my frustration that so little research has been done in my lifetime of this disease. I'm not frightened of having a retroviral as my life has been destroyed already in many ways. At least I would have a chance of treating it if I knew what I was.

 

[urraco2012]

Hi Urraco,

I am really sorry that people have been scared for so long about HIV. That's a terrible position to be in.

HIV/AIDs wasn't around when I first became ill and it wasn't after a sexual exposure. Some of my friends did come down with HIV/AIDs in the first wave but these were not friends I had sexual relationships with. As each new virus has been discovered I have been tested and for some I am positive and some negative. All my HIV/AIDs tests have been negative plus HTLV.

One of the doctors looking at an 80's outbreak did find some signs of retroviral activity and I have hoped for years that someone would follow up this work to see if it could be replicated. That's what I was hoping would happen with XMRV but it was only superfically looked at (other retroviral activity). Would still like to see this happen. There are other people with ME in my family and that includes in-laws, so an infection could be possible.

When I became ill it was a recognised outbreak so felt a little different to a lone person after a sexual encounter. I was able to learn about ME quickly and meet others with the disease. There were still ME-knowledgable doctors around. I got to see people with HIV/AIDS die and they were very different to my own disease experience. It was a tragedy for them and for those of us left behind to suffer.

A retrovirus could explain why I have so many co-infections. It could be another undiscovered virus or one that we know about (like an entrovirus) but don't know how to treat yet. I can't describe my frustration that so little research has been done in my lifetime of this disease. I'm not frightened of having a retroviral as my life has been destroyed already in many ways. At least I would have a chance of treating it if I knew what I was.

ukxmrv,
THanks, you are helping us to understand this (if this is the same thing you have). Can you tell us what were your symptoms at the beginning? Over the years, have you had problems to work? (I´m thinking to quit my job, this is not allowing me to have a good performance and I´m sleepy all the time. hoping to rest a few months, get better as much as possible and then see another work in the future). Many of us think that it is contagious (not just sexual) and may transmit it to our family with different results in each (some reactions are not as long in time). sorry if I make you very personal questions, but have you had a relationship over the years? have they had any problem?

 

[Survivor84]

http://www.publichealthalert.org/Articles/scottforsgren/mycoplasma.htm

Lengthy article, but very informative. I definitely think this is playing a major role, maybe not all, but some

 

[ukxmrv]

No worries Urraco2012, I just don't want people to feel as if I am hikacking this thread.

My symptoms started out of the blue one day with a severe sore throat, glands. I had a high temperature and was delirious and unconscious for long periods My boyfriend of a year had no symptoms at all like this. This got a little better, then worse, then a little better for years. I was never well again. I slept for about a year it feels like with short trips to get food or cook. Started fainting and passing out as soon as I first ventured from the bed. Noticed that from the first week. It wasn't possible to notice any feelings of being sleepy or tired or fatigued as I was too acutely ill with the viral ones. Infections as well in the throat, sinus area. The viral symptoms stay with me to this day. Over the years I've had bouts of severe food poisoning from a variety of identified pathogens. Tested positive for a number of viri.

Work has been off and on for me. I was a young student and had to give up university because I was too sick to leave the house to attend. Then in the next 20 years I had periods when I was able to work but never physically well enough to hold down a full time permanent job. I ended up getting fired due to having too much sick leave. Tried working part time and on short term contracts. For the past 10 years I have been mainly housebound. Improving a little over the last 2 years. Been too sick even to work from home.

None of my sexual partners have ever showed signs of ME accept for one person who developed viral symptoms straight after but recovered.

My Mother and sister developed ME symptoms only after I had lived with again them briefly about 15 years ago. Other family members show signs of ME or CFS or CF. In my extended family 2 of the inlaws have classic ME. One pre-dates mine. Another inlaw has an unexplained disease. My family die young of cancer in general. Osteoporosis is common from an early age. One cousin died suddenly, one cousin very young from cancer and another has a mystery disease that strikes every now and then.

 

[Survivor84]

http://www.life-sources.com/pages/Mycoplasmas-&-Cell-Wall-Deficient-Forms.html

 

[wyomingscared]

So... I think I have found my issue. Cocksackie b

All symptoms fit from start to finish.

Recently, my ribs started to hurt and read it was costochondis which is usually triggered by cocksackie b.

Had any one read up on this disease