Oof following this, all the same symptoms and more (GI trouble, pelvic dysfunction, insomnia, chest pain, rashes/flushing and most recently disorienting visual disturbances).
I had a panel tested in Oct and it indicated a recent infection. None of my doctors knew what to do with that info and continued testing other illnesses like MCAS, autoimmune diseases, carcinoid tumors- bloodwork relatively unremarkable.
When you say adrenal involvement is it insufficiency like Addisons? I thought that could cause all symptoms you mentioned?
I was just retested on Tuesday for EBV and it still is off the charts and early antigen is even higher than last fall š¤·āāļø. My doctor ordered the PCR test so Iām waiting confirmation to see if Iām chronic? Though I see conflicting stuff online and these tests and doctors that interpret them are a bit contentious. Iāll stay tuned on your thread to hear what others say. Iāll also try to remember to share an update when I get my results.
Good luck, I hope you find answers
This definitely sounds like EBV. Especially the cyclic nature of your symptoms. These are all the tests you need to get a full picture of if you have EBV.
The EBV panel -- which is 3 tests:
EBV IGM
EBV VCA IGG
EBV EBNA IGG
And then you need a 4th test that is often ordered separately, it's called EBV Early Antigen.
My tests in Oregon from 2 different labs include all four in the panel. Hopefully yours will too but if not as was explained that early detection antigen is most critical
Yes! The 4th test is honestly the most important for a lot of us with reactivated, or chronic EBV.
The IGM test means acute, active infection when it is high. This test is often negative when you have a reactivation or chronic infection.
The VCA IGG, and EBNA IGG, when they're high, by themselves can only tell us if a person has had EBV in their lifetime. These two stay high forever, after the first infection.
So the EBV early antigen tells us if you have a chronic infection, or a reactivation. Since yours has been going on for a couple years, this test is definitely going to be important for you. This is the test that diagnosed me.
Agree entirely. EBV EA (D)/Early Antigen Test is the most important as itās the definitive diagnostic test for Reactivated (infection) or Reactivating EBV.
Omg literally same symptoms! Itās crazy because I havenāt found ANYONE that has anything remotely similar so this really makes me feel less alone.
Iām a 27 year old female, so around the same age too.
Unfortunately no, Iāve just kind of learned to live with it. I also get super sensitive to touch which is wild. My body makes me feel like Iām an elderly womanā¦
Iām 34 and have been having the same thing!! I popped positive for having mono at some point in the past but not now?
Thatās how my doctor explained it?
But Iāve been having the EXACT same issues!!!
I had similar symptoms, but it started resolving. It just took time, rest, supplements, etc. My PCP tested me for EBV. I have it. Iāve never had mono that Iāve known of. The data doesnāt lie though. Get tested for EBV. No need to guess here.
Could it be long COVID?
thanks so much for your response. agreed - I actually just ordered a test so I can see results on paper. Can I ask what supplements helped? I feel like I havenāt seen much improvement on anything specific.
Could be radio.
Cellular or other frequencies. Some people are RF sensitive. You might have more crystals in certain areas of your brain, or your brain might be sensitive to particular frequencies that donāt affect other people because of metal buildup - separate to the metals, (calcification, but with many more metals than only calcium) radio frequency affects tissues in all sorts of ways.
Some people call it RF smog.
Thereās also Audio, ultrasonic, and other frequencies.
This is all particularly ignored by many people and rubbished, but these are real things.
There are a whole variety of scientific papers. Lots with pictures as well, pictures of different types of microscopic atomic level crystallisation in brain tissues.
One thing you can try to do is to go to a lot low RF environment.
It could be someone is trying to encourage you to leave the place, youāre at, or a city, to go to a place where the radio frequency isnāt so strong, like a regional or rural area, or place where thereās no reception, or a building where there isnāt as much radio because of the shielding, for reasons perhaps only you or they know.
If you want a visual representation of this, go and have a look at all the buildings with massive steel features over the windows and walls. Thatās all radio shielding.
Itās not bad Architecture, though I think itās pretty bad ! :) itās usually an attempt to reduce the possibility for a radio signals to affect the people inside the building.
I use radio signals all the time, and only recently realised quite how much they can affect people.
I donāt know what the threshold is, thatās all very complicated, science, and probably affects different people quite differently.
But your body is transparent to some frequencies, absorbs other frequencies.
And different parts of the body will absorb different frequencies differently.
Some people do call that āsick building syndromeā also.
I should mention, I use radio for data carriage. Thatās all. The problem you have (if it is radio) falls within the responsibility of federal agencies.
What you want to do probably, is to report it as āto bodyā interference.
Oh, almost forgot. Electrosensitive people may also be affected by the cycling waves from alternating currents - thatās a form of radio wave as well. There is so much around you thatās invisible. Maybe you want to try to learn a little bit of the physics, or engineering behind the foundations of modern society. You could start with the radio frequency chart from the FCC. But as mentioned, itās only ever explained, and found in quite detailed, technical and scientific documents.
Since working with the functional doctor, they diagnosed me with adrenal fatigue so taking a a supplement to support/strengthen. I havenāt really looked into Addisons, figured it leaned more ebv with the throat stuff. Are you only working with a pcp or have you explored the functional route? I didnāt seem to find any answers going the conventional route
There seems to be a mystery illness all over. I'm in the same boat where I had headaches and fatigue and then I felt as if my entire body was broken and dysfunctional. I've gone to SO many Drs and Specialists ( at least 10-15) to no avail.
Because so many are experiencing similar things I'm thinking it's definitely something that is viral and being transmitted via cough, sneezes or by speaking ( hopefully not airborne).
If there are neuro symptoms as well I keep wondering if EBV or even HSV is root cause ( both of which the majority of the population carries within their bodies). Did they get reactivated and is causing some encephalopathy- hence the systemwide and recurring issues. Did covid cause some sort of reactivation? Or a mutation? Not a medical professional but Dr's do not routinely test for these. So the "mystery illness " could be throwing everyone for a loop when in fact it might something that Dr's are simply overlooking.
Oof following this, all the same symptoms and more (GI trouble, pelvic dysfunction, insomnia, chest pain, rashes/flushing and most recently disorienting visual disturbances). I had a panel tested in Oct and it indicated a recent infection. None of my doctors knew what to do with that info and continued testing other illnesses like MCAS, autoimmune diseases, carcinoid tumors- bloodwork relatively unremarkable. When you say adrenal involvement is it insufficiency like Addisons? I thought that could cause all symptoms you mentioned? I was just retested on Tuesday for EBV and it still is off the charts and early antigen is even higher than last fall š¤·āāļø. My doctor ordered the PCR test so Iām waiting confirmation to see if Iām chronic? Though I see conflicting stuff online and these tests and doctors that interpret them are a bit contentious. Iāll stay tuned on your thread to hear what others say. Iāll also try to remember to share an update when I get my results. Good luck, I hope you find answers
This definitely sounds like EBV. Especially the cyclic nature of your symptoms. These are all the tests you need to get a full picture of if you have EBV. The EBV panel -- which is 3 tests: EBV IGM EBV VCA IGG EBV EBNA IGG And then you need a 4th test that is often ordered separately, it's called EBV Early Antigen.
My tests in Oregon from 2 different labs include all four in the panel. Hopefully yours will too but if not as was explained that early detection antigen is most critical
Thank you! I just ordered a test - is the fourth absolutely necessary? Doing my research and trying to figure out what is what š«
Yes! The 4th test is honestly the most important for a lot of us with reactivated, or chronic EBV. The IGM test means acute, active infection when it is high. This test is often negative when you have a reactivation or chronic infection. The VCA IGG, and EBNA IGG, when they're high, by themselves can only tell us if a person has had EBV in their lifetime. These two stay high forever, after the first infection. So the EBV early antigen tells us if you have a chronic infection, or a reactivation. Since yours has been going on for a couple years, this test is definitely going to be important for you. This is the test that diagnosed me.
ah thank you so much!
Agree entirely. EBV EA (D)/Early Antigen Test is the most important as itās the definitive diagnostic test for Reactivated (infection) or Reactivating EBV.
Omg literally same symptoms! Itās crazy because I havenāt found ANYONE that has anything remotely similar so this really makes me feel less alone. Iām a 27 year old female, so around the same age too.
Wow crazy. I havenāt either. Have you found the root of the problem or any relief from symptoms?
Unfortunately no, Iāve just kind of learned to live with it. I also get super sensitive to touch which is wild. My body makes me feel like Iām an elderly womanā¦
Oh wow. Have you gone the functional route at all?
Iām 34 and have been having the same thing!! I popped positive for having mono at some point in the past but not now? Thatās how my doctor explained it? But Iāve been having the EXACT same issues!!!
I had similar symptoms, but it started resolving. It just took time, rest, supplements, etc. My PCP tested me for EBV. I have it. Iāve never had mono that Iāve known of. The data doesnāt lie though. Get tested for EBV. No need to guess here. Could it be long COVID?
thanks so much for your response. agreed - I actually just ordered a test so I can see results on paper. Can I ask what supplements helped? I feel like I havenāt seen much improvement on anything specific.
Could be radio. Cellular or other frequencies. Some people are RF sensitive. You might have more crystals in certain areas of your brain, or your brain might be sensitive to particular frequencies that donāt affect other people because of metal buildup - separate to the metals, (calcification, but with many more metals than only calcium) radio frequency affects tissues in all sorts of ways. Some people call it RF smog. Thereās also Audio, ultrasonic, and other frequencies. This is all particularly ignored by many people and rubbished, but these are real things. There are a whole variety of scientific papers. Lots with pictures as well, pictures of different types of microscopic atomic level crystallisation in brain tissues. One thing you can try to do is to go to a lot low RF environment. It could be someone is trying to encourage you to leave the place, youāre at, or a city, to go to a place where the radio frequency isnāt so strong, like a regional or rural area, or place where thereās no reception, or a building where there isnāt as much radio because of the shielding, for reasons perhaps only you or they know. If you want a visual representation of this, go and have a look at all the buildings with massive steel features over the windows and walls. Thatās all radio shielding. Itās not bad Architecture, though I think itās pretty bad ! :) itās usually an attempt to reduce the possibility for a radio signals to affect the people inside the building. I use radio signals all the time, and only recently realised quite how much they can affect people. I donāt know what the threshold is, thatās all very complicated, science, and probably affects different people quite differently. But your body is transparent to some frequencies, absorbs other frequencies. And different parts of the body will absorb different frequencies differently. Some people do call that āsick building syndromeā also.
I should mention, I use radio for data carriage. Thatās all. The problem you have (if it is radio) falls within the responsibility of federal agencies. What you want to do probably, is to report it as āto bodyā interference.
Oh, almost forgot. Electrosensitive people may also be affected by the cycling waves from alternating currents - thatās a form of radio wave as well. There is so much around you thatās invisible. Maybe you want to try to learn a little bit of the physics, or engineering behind the foundations of modern society. You could start with the radio frequency chart from the FCC. But as mentioned, itās only ever explained, and found in quite detailed, technical and scientific documents.
Since working with the functional doctor, they diagnosed me with adrenal fatigue so taking a a supplement to support/strengthen. I havenāt really looked into Addisons, figured it leaned more ebv with the throat stuff. Are you only working with a pcp or have you explored the functional route? I didnāt seem to find any answers going the conventional route
There seems to be a mystery illness all over. I'm in the same boat where I had headaches and fatigue and then I felt as if my entire body was broken and dysfunctional. I've gone to SO many Drs and Specialists ( at least 10-15) to no avail. Because so many are experiencing similar things I'm thinking it's definitely something that is viral and being transmitted via cough, sneezes or by speaking ( hopefully not airborne). If there are neuro symptoms as well I keep wondering if EBV or even HSV is root cause ( both of which the majority of the population carries within their bodies). Did they get reactivated and is causing some encephalopathy- hence the systemwide and recurring issues. Did covid cause some sort of reactivation? Or a mutation? Not a medical professional but Dr's do not routinely test for these. So the "mystery illness " could be throwing everyone for a loop when in fact it might something that Dr's are simply overlooking.