• 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.

HIV EBV STORY--Please GIve Me Your Thoughts

Messages
18
Hello,

I'm new to the boards and wold like to share my story to garner some opinions as I'm new to all of this.

A year ago I had a sexual experience with a woman I later found out to possess HIV. This event happened the day before thanksgiving and my symptoms set on almost immediately after, which for HIV, is unusual as theres usually an incubation period. I thought for certain I'd contracted the HIV virus and, naturally, I freaked out and had panic attacks almost every day for about a month.

My symptoms at first were very unusual...I ran a very, very low fever for a little while and then suddenly my body started to become cold. It started in my feet at first, they were very cold to the touch as if my blood had stopped flowing to my feet. What set on the following weeks after that encounter I wouldn't wish on my worst enemy. I had sever muscle aches in various parts of my body. My lymph nodes under my armpits swelled and I experienced blurred vision. I had continious herpes outbreaks around my rectum and SEVERE constipation which has lasted all this time...

I thought for sure I'd caught the HIV virus. But I was wrong...apparently. I was tested for a year with various testing methods, the method for antibodies, the method for the virus itself. My infectious disease doctor concluded me HIV negative after 7 months of testing, stating after a test for the virus itself in my blood, "your body has never seen the HIV virus."

He tested me for a multitude of disease and the ONLY one that stood out was EBV. I can't quite remember my EBV results but the EBNA was HIGH. Extremely high. My doctor said he believed I was suffering from either a reactivation or primary infection of EBV.

Symptoms I still have are:

Randomized twitching all over my body,
Random pain all over my body,
Constipation, but when I do poop my feces looks like it has mucuous on it (im suspecting candida)
Thick blood--Hypercoagulation? (I started taking nattokinase)

I remember when this disease first set on my doctor had diagnosed me with extremely low vitamin D and anemia, and also said my triglycerides were high. I was experiencing blurred vision, burning legs, muscle aches and pain.

I gave up on HIV being the culprit, although I still find myself scared because it was a confirmed encounter. Protected intercourse but unprotected oral sex--I received. (which everyone has told me is no risk at all).

I know you can get Mono, or EBV however from saliva. Is there anyone else who got this from a sexual experience? Is there anything else I can tests my body for?

Do you think what I have is EBV? The CFS/Fibro symptoms I see people posts here and the link with EBV def makes me feel like I've found a group of people I can relate to FINALLY.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I know you can get Mono, or EBV however from saliva. Is there anyone else who got this from a sexual experience? Is there anything else I can tests my body for?

Mono/EBV is commonly called "kissing disease" .. I myself got it when I was a teen from partying and we were handing around a large bottle of alcohol a few of us were sharing and drinking out of same bottle (so saliva contact).

People with HIV are more likely to be carrying other things too due to their lowered immunities.
 

Tammy

Senior Member
Messages
2,167
Location
New Mexico
I believe that EBV is what caused my CFS. That's how I got on disability to begin with.............high ebv titers. From what you have said..............I would say most definitely that you are dealing with EBV. I am improving after almost 20 yrs of being ill. I am taking herbal anti-virals and other supplements to fight this nasty virus. Progress has been slow...........but last night I was going over all the myriad symptoms I've had and have marveled over how many are gone.
 
Messages
97
I think EBV/mono is what started my road to decline. Had it in 2002 and never got back to my 100%. I have not had my titer done yet. Presently trying to sort out other issues. I do have lots of twitching and pain like you mention.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
As well as EBV it is likely that herpes 2 is causing some of your symptoms. The viruses like to piggy back on a already lowered immune system. I tested for 4 active herpes viruses in one blood test last year after a horrendous 6 week period. I was trying to do what @Tammy was doing but I also have mega intolerance issues and can't even take 500mg of lysine. So I'm going to try Famvir, just got waiting to see which doctor is going to prescribe it for me. Perhaps you could look up Dr Lerners stuff on EBV and treatment. The more natural route as Tammy is doing is the best I think but you have to be able to tolerate the protocol.
 

Tammy

Senior Member
Messages
2,167
Location
New Mexico
As well as EBV it is likely that herpes 2 is causing some of your symptoms. The viruses like to piggy back on a already lowered immune system. I tested for 4 active herpes viruses in one blood test last year after a horrendous 6 week period. I was trying to do what @Tammy was doing but I also have mega intolerance issues and can't even take 500mg of lysine. So I'm going to try Famvir, just got waiting to see which doctor is going to prescribe it for me. Perhaps you could look up Dr Lerners stuff on EBV and treatment. The more natural route as Tammy is doing is the best I think but you have to be able to tolerate the protocol.
I'm very sensitive to supplementation also. I had to start with VERY low doses and work up. Even with low doses I had detox reactions! I just had to keep going. Wish Dr. Lerner was still with us.:(
 
Messages
18
Guys,

I sincerely thank you guys for replying back on this post. I've been fighting this thing for about a year and a half now and I'm only 23. Nobody thinks I'm sick because I look fine, however my mental and physical stress is real. I'm very tired of being in pain and not being able to do the things I love like weight lift etc...it's really broken my ego.

I don't have health insurance to get anti-virals at the moment (it ran out as soon as I'd gotten the info that long term anti vitals might help me) so I'm waiting to reapply to start that.

Is there anybody who suffers from a feeling of thick blood? How'd you cope with that? I tried nattokinase and it doesn't seem to work. I also have pleurisy in the right and left side of my chest. It comes and goes sometimes a while in between the long attacks. The randomized pain and twitching makes me feel like I'm in a jail cell that is my body.

It's made me really depressed.
 

Hip

Senior Member
Messages
17,806
It is a long shot, but the muscle twitching symptom reminds me of the Chinese HIV-like virus, whose symptoms are listed at the bottom of the page here. This Chinese virus is often contracted during an amorous encounter, but is in fact a respiratory virus transmitted by saliva. There are reports of the symptoms improving after around 2 years.

In patients with this Chinese virus, one researcher found herpes family virus reactivations are common.

You could try some valacyclovir (Valtrex) for the high EBV.
 
Messages
18
The symptoms of that virus are very similar to what I've experienced, but it makes me anxious to think it could be that or EBV. I was sort of set in stone that it's EBV. No one in my family has gotten sick from me and my new girlfriend has been completely fine
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
I was told last week by a highly experienced ME doctor that once viruses get a good hold (as they have with me) L-lyseine will not cut it at all. I needs the big guns of Famvir etc, as per the late great Dr Martin Lerner.

Oh I did get a sympathetic young GP who said she'd prescribe Famvir after I told her Acyclovir didn't help, however she phoned me back half an hr later, the senior GP had put in my notes, this surgery only prescribes Acyclovir. How's that for backward healthcare? :(
 

Daffodil

Senior Member
Messages
5,873
@bronxxed ..I also got CFS from EBV/kissing a sick person. this person happened to have been very promiscuous so I always wonder if I got something other than EBV that they cannot find....but who knows?

some people are trying antivirals but they never helped me...but my viral antibodies were never all that high.

you could get tested for Lyme, perhaps?

if at all possible, I would try to see a good specialist sooner rather than later. the disease has destroyed my life for almost 23 yrs.....but I have met people who did very well, who were treated early.

xoxo
 
Last edited:

Hip

Senior Member
Messages
17,806
I was sort of set in stone that it's EBV.

In concept, it could be that EBV is causing many of your symptoms, even though another virus may be responsible for the lowering of immunity that allows dormant EBV to reactivate to high levels.

That other virus may well be an enterovirus, such as coxsackievirus B or echovirus (the two species of enterovirus linked to ME/CFS).

Dr Chia did some research on enterovirus infections, and found that within the first 2 months of catching an enterovirus such as coxsackievirus B, people may develop outbreaks of shingles on their skin, caused by the reactivation of latent varicella zoster virus in their body (a herpes family virus). This reactivation is due to weakened immunity (a decline in CD8 cells in the blood), which is temporarily caused by the enterovirus.

So the enterovirus temporarily weakens the immune system, and then varicella zoster virus reemerges, causing the shingles rash on the skin. Most people have varicella zoster in the body in latent (dormant state); it is otherwise known as the chickenpox virus.

Could your rectal herpes outbreaks in fact been shingles? A shingles rash looks like this.


Regarding whether your EBV infection was a primary infection, or reactivation of EBV: one way to help distinguish between the two is looking at the incubation period of your symptoms. The incubation period is the time between first catching an infection, and the appearance of its first symptoms.

Let's assume you did indeed catch your infection from kissing (ie, via saliva) during your amorous encounter (which happens quite a lot, from accounts I read online). Now I gather from what your wrote that your symptoms started quite soon after that encounter, within a week. Would that be correct?

In which case, that rules out EBV as being the virus that you caught during that encounter, because the incubation period of EBV is 4 to 6 weeks. So had you caught EBV from kissing, the symptoms would have only appeared 4 to 6 weeks later. Thus if we assume you caught your virus from that encounter, it can't be EBV, based on the incubation period data. Which means your EBV infection is most likely a reactivation.

By contrast, if you look coxsackievirus B, the incubation period is 2 to 5 days, which is more in keeping with when your symptoms first appeared.


I myself caught a virus very similar to the Chinese "HIV-like" virus, and my virus is very likely an enterovirus like coxsackievirus B. You can see a list of symptoms triggered in by virus on my website here.


Regarding the anxiety symptoms: it certainly sounds like you had a major anxiety problems after catching the virus (intense worrying about having HIV). That is what many people catching the Chinese virus experience. The virus effects mental state. Would you say that you were of an anxious disposition before catching your respiratory virus, or did this anxiety only manifest afterwards? When I caught my virus, after around a month some I developed a series of mental symptoms, including severe anxiety (mental tension).

If you are still suffering from anxiety, I found some highly effective treatments for my virally-induced anxiety: see here.
 
Last edited:
Messages
18
In concept, it could be that EBV is causing many of your symptoms, even though another virus may be responsible for the lowering of immunity that allows dormant EBV to reactivate to high levels.

That other virus may well be an enterovirus, such as coxsackievirus B or echovirus (the two species of enterovirus linked to ME/CFS).

Dr Chia did some research on enterovirus infections, and found that within the first 2 months of catching an enterovirus such as coxsackievirus B, people may develop outbreaks of shingles on their skin, caused by the reactivation of latent varicella zoster virus in their body (a herpes family virus). This reactivation is due to weakened immunity (a decline in CD8 cells in the blood), which is temporarily caused by the enterovirus.

So the enterovirus temporarily weakens the immune system, and then varicella zoster virus reemerges, causing the shingles rash on the skin. Most people have varicella zoster in the body in latent (dormant state); it is otherwise known as the chickenpox virus.

Could your rectal herpes outbreaks in fact been shingles? A shingles rash looks like this.


Regarding whether your EBV infection was a primary infection, or reactivation of EBV: one way to help distinguish between the two is looking at the incubation period of your symptoms. The incubation period is the time between first catching an infection, and the appearance of its first symptoms.

Let's assume you did indeed catch your infection from kissing (ie, via saliva) during your amorous encounter (which happens quite a lot, from accounts I read online). Now I gather from what your wrote that your symptoms started quite soon after that encounter, within a week. Would that be correct?

In which case, that rules out EBV as being the virus that you caught during that encounter, because the incubation period of EBV is 4 to 6 weeks. So had you caught EBV from kissing, the symptoms would have only appeared 4 to 6 weeks later. Thus if we assume you caught your virus from that encounter, it can't be EBV, based on the incubation period data. Which means your EBV infection is most likely a reactivation.

By contrast, if you look coxsackievirus B, the incubation period is 2 to 5 days, which is more in keeping with when your symptoms first appeared.


I myself caught a virus very similar to the Chinese "HIV-like" virus, and my virus is very likely an enterovirus like coxsackievirus B. You can see a list of symptoms triggered in by virus on my website here.


Regarding the anxiety symptoms: it certainly sounds like you had a major anxiety problems after catching the virus (intense worrying about having HIV). That is what many people catching the Chinese virus experience. The virus effects mental state. Would you say that you were of an anxious disposition before catching your respiratory virus, or did this anxiety only manifest afterwards? When I caught my virus, after around a month some I developed a series of mental symptoms, including severe anxiety (mental tension).

If you are still suffering from anxiety, I found some highly effective treatments for my virally-induced anxiety: see here.

I would say that my anxiety set on right after because the woman was confirmed to have HIV, but my symptoms definitely set on just about 3 days later. What's interesting about what I've been reading in the information you gave me is the part about the sinuses being affected. I forgot to mention that was a HUGE symptom for me--this feeling of pressure in my head and around my nose. It took so long to go away on its own. When I think back on it one of the first major symptoms were this intense burrowing chest pain and the sinus problems. I really do wonder if this is a respiratory virus like you said.
 
Messages
18
Okay, now I'm really glad I joined this board! After reading the information on Hip sent me I found this website :

http://www.enterovirusfoundation.org/symptoms.shtml

The list of symptoms on there read like a timeline of my history so far. I truly do believe I have some sort of enterovirus that brought out EBV to its active form again in me. Like Hip said, with the incubation time period and everything EBV may not be the only culprit. Another long term symptom I've had is constipation--a lot of individuals I read about who get viruses get diarrhea or have no trouble necessarily having bowel movements--that lists of symptoms for enteroviruses is the only one I've read so far that actually states it can cause constipation.

My only question left is...how can I get diagnosed and what can I do to treat this? There doesn't seem to be many treatments available--or treatments aimed at the symptoms, which I can say honestly hasn't helped me. What kind of specialist do you guys recommend I see?

Many thanks, God bless you guys
 
Messages
18
Also just wanted to add I have been tested for Lyme and it's negative. I live in the city in NYC so I don't think it's even likely I have Lyme. Someone mentioned that people with HIV are more likely to carry other things due to lowered immunity--I had a theory on that when I first got sick and I totally agree--it seems to make sense to me.
 

Hip

Senior Member
Messages
17,806
My only question left is...how can I get diagnosed and what can I do to treat this?

Dr John Chia in California is an enterovirus and ME/CFS expert, and he found that in the case of chronic enterovirus infections, only one lab in the US had tests sensitive enough to detect these enterovirus infections, and that was ARUP Lab. Lab tests are: Coxsackievirus B Antibodies, Echovirus Antibodies. Titers of 1:320 and higher in these tests are good indicators of an active infection. ARUP tests can be ordered directly, or ordered through Labcorp. They are expensive though, around $500 each one.

Chronic enterovirus is hard to detect, because in long term infections, it lives mostly inside human cells as an intracellular infection.

If you want to book an appointment with Dr Chia, note that he currently has a 9 month waiting list.

Unfortunately there is very little in terms of enterovirus treatments. Dr Chia mainly uses the immunomodulator oxymatrine (lots of info about this on this forum; see here and here to start with). You can buy oxymatrine online without a prescription. Oxymatrine only works for around 25% of ME/CFS patients though.
 
Messages
18
Dr John Chia in California is an enterovirus and ME/CFS expert, and he found that in the case of chronic enterovirus infections, only one lab in the US had tests sensitive enough to detect these enterovirus infections, and that was ARUP Lab. Lab tests are: Coxsackievirus B Antibodies, Echovirus Antibodies. Titers of 1:320 and higher in these tests are good indicators of an active infection. ARUP tests can be ordered directly, or ordered through Labcorp. They are expensive though, around $500 each one.

Chronic enterovirus is hard to detect, because in long term infections, it lives mostly inside human cells as an intracellular infection.

If you want to book an appointment with Dr Chia, note that he currently has a 9 month waiting list.

Unfortunately there is very little in terms of enterovirus treatments. Dr Chia mainly uses the immunomodulator oxymatrine (lots of info about this on this forum; see here and here to start with). You can buy oxymatrine online without a prescription. Oxymatrine only works for around 25% of ME/CFS patients though.

I definitely don't have the resources to go and see Dr. Chia. I'm only 23 and pretty much support myself so flying to California is out of the question... So basically if I do have this there's very little working treatments and if that doesn't work I just have to live like this? I'm at a loss for words right now lol... :/
 

Hip

Senior Member
Messages
17,806
You may find your symptoms improve on their own over time, over the next year or two. This is what people with the Chinese virus reported. I also found that with my own virus, the constant body-wide pins and needles it initially caused eventually went away after 2 or 3 years.

I think there are forums for twitching muscles (benign fasciculation syndrome), which might be worth checking.

Bear in mind that enterovirus is linked to causing the serious disease of ME/CFS, which can leave you housebound or even bedbound for decades, due to sheer fatigue and brain fog (brain fog is where you can't think straight, like having dementia), and ME/CFS has a whole raft of unpleasant symptoms. Work and normal life are beyond reach. Many on this forum are in this state.

So if you don't get ME/CFS, and if hopefully your symptoms slowly improve, you will be doing well.
 

Hip

Senior Member
Messages
17,806
I should add that enterovirus is only a suggestion for the pathogen you caught. It fits the incubation period and some symptoms; but you could have caught something else.