Do you have an active EBV infection? (POLL)

Do you have an active EBV infection?

  • Yes - But my VCA IgM and Early Antigen (EA) IgG titers are normal

    Votes: 0 0.0%

  • Total voters
    29

sometexan84

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The correlation is interesting, but it hasn't convinced me that "EBV is the Answer!" It might just indicate that some PWME have worse symptoms due to some form of viral infection.
Correct, it is just a correlation. I don't think EBV is THE answer, nor do I think any single element is the answer. Def more than a single element involved w/ my overall condition. And I suspect it's like that with almost everyone.

I too believe PWME have varying symptoms due to some form of viral infection. Especially based on level of infection, number of infections, type of infection, and locality of infection.

If you consider the Occam's Razor principle, in that “the simplest solution is almost always the best,” then EBV would be a very logical #1 theory. I think there's a reason why EBV is been involved in so many CFS studies since like the 1980's up to now.

I did check a couple of threads about antivirals, and they don't seem to have all that high a success rate, so viral infections might just be a contributing factor for a subset of PWME.
Perhaps. I've found many reasons why antivirals have been reported as "unsuccessful". I will say that Valtrex has been successful for me. And there are a lot of Valtrex / EBV success stories. Hip hasn't put them up on the Recovery Stories thread yet. But there are actually a ton out there.
 

Hip

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That said, though the sample is small thus far .....
92.3% of us have active EBV infection
Because the people who answer this poll are self-selecting, that percentage may not be represenative of the general ME/CFS patient community. Just by the title of this thread, the thread may tend to attract those who know they have EBV issues; and people whose ME/CFS is not linked to EBV may ignore this thread.

I've never actually seen any reliable published data for what viral subset ME/CFS patients belong to. Part of the problem is there is no agreement as to what constitutes an active viral infection in ME/CFS.

However, I've previously calculated that roughly around 16% of ME/CFS cases may be due to an EBV trigger.

The calculation is based on this UK study, which found that after mononucleosis, 9% go on to get ME/CFS. The calculation is as follows:

This US paper says the yearly incidence of mononucleosis is 45.2 cases per 100,000 of general population. If 9% of these cases go on to get ME/CFS, then the annual incidence of mononucleosis-triggered ME/CFS would be 4 cases per 100,000 persons.

Now according to this Norwegian study, the yearly incidence of ME/CFS is 25.8 new cases per 100,000 persons.

So this suggests that about 16% of new cases of ME/CFS are due to an EBV trigger. So the other 84% of new ME/CFS case will be due to other triggers, like enterovirus, cytomegalovirus, parvovirus B19, vaccination triggers, etc.



Of course, even if EBV was not the trigger of your ME/CFS, and your ME/CFS was triggered by some other virus, that other virus might conceivably cause some EBV reactivation, which might in turn play a causal role in your ME/CFS. Often ME/CFS patients have more than one active viral infection, so the triggering virus may not be the only virus potentially playing a role in your illness.
 

sometexan84

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Because the people who answer this poll are self-selecting, that percentage may not be represenative of the general ME/CFS patient community. Just by the title of this thread, the thread may tend to attract those who know they have EBV issues; and people whose ME/CFS is not linked to EBV may ignore this thread.
No, 100%, you're totally right. By no means is this super scientific, nor should it be seen as representative of the general ME/CFS community. I'm hoping people take it for what it is. I mean, I think most people here get that.

"92.3% of us..." just referencing "us" as in, those that answered the Poll.

Part of the problem is there is no agreement as to what constitutes an active viral infection in ME/CFS.
For EBV, active viral infection info in my last post. You can find the same info online.

However, I've previously calculated that roughly around 16% of ME/CFS cases may be due to an EBV trigger.
I think you should redo the calculations and figure out how to add in the fact that people don't know they have an active EBV infection. That's what this poll was about. I believe the numbers are WAY higher than 16%. BUT, again that's not what this thread is about. I did this to demonstrate that it's a prominent virus and that people don't test for it enough, and that the test results are difficult to interpret.

The calculation is based on this UK study, which found that after mononucleosis, 9% go on to get ME/CFS. The calculation is as follows:

This US paper says the yearly incidence of mononucleosis is 45.2 cases per 100,000 of general population. If 9% of these cases go on to get ME/CFS, then the annual incidence of mononucleosis-triggered ME/CFS would be 4 cases per 100,000 persons.

Now according to this Norwegian study, the yearly incidence of ME/CFS is 25.8 new cases per 100,000 persons.

So this suggests that about 16% of new cases of ME/CFS are due to an EBV trigger. So the other 84% of new ME/CFS case will be due to other triggers, like enterovirus, cytomegalovirus, parvovirus B19, vaccination triggers, etc.
Ok, but that is a really roundabout way. So many possibilities for error.

The UK study is 1998. I can't imagine that could still hold relevance.

I never had mono symptoms. I think many w/ re-activated EBV would never have been involved in a mono study. Those that got EBV at whatever age, were asymptomatic, and later on it got re-activated triggering CFS. I think there's a decent chunk of ME/CFS that fit what I'm referring to here. And the calculations you mention would not include them at all.

"About 90 percent of people are infected at some time in their lives with Epstein-Barr virus (EBV)"

It has less to do w/ people that have or had mono symptoms, and more to do with 1) active EBV infection and 2) active EBV infection that triggers to genes that induce CFS symptoms.

The way you're calculating seems super difficult. Maybe impossible. What I'd do is take all the most recent EBV/CFS studies and average them all together for a closer look at EBV involvement in ME/CFS.

Btw, I believe my enterovirus caused EBV reactivation. And then that EBV reactivation caused CFS symptoms for me.

At this moment, the #2 choice in the poll has been chosen the most. Which means EBV RE-activation. This includes me. And I guarantee you, out of the (6) of us that put that answer, most of us will not recall having mono ever in our lives.

Btw, where's your vote mr hip?
 

Hip

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Ok, but that is a really roundabout way. So many possibilities for error.
Yes, it is totally a rough ballpark figure.


Dr Chia is always saying that in ME/CFS we need to test the tissues, not the blood, to get a more accurate picture of viral infection in ME/CFS. While there have been many studies finding enterovirus in the tissues of ME/CFS patients, there have been almost no studies searching for herpesviruses in the tissues, for reasons that are not clear to me.

But one great study from 1991, which tested 140 ME/CFS patients, is to my knowledge the only study ever to test the muscle tissues of patients for both enterovirus and EBV. They found:
enteroviral RNA in 24% of biopsy samples and EBV DNA in a further 9% of biopsy samples: no biopsy was positive for both enteroviral RNA and EBV DNA.
The percentages will not precisely reflect prevalence of these viruses in ME/CFS patients, as the percentages will depend on test sensitivity.

But I found it interesting that no biopsy was positive for both enterovirus and EBV. This perhaps suggests that you either have ME/CFS from enterovirus, or from EBV (or some other herpesvirus).




Btw, where's your vote mr hip?
My enterovirus infection I caught in 2003, and in 2005 I got some EBV testing done (results below), but not the VCA IgM, so I don't think I can answer the poll.

EBNA IgG antibody High Positive : 3.383 OD ..... (Pos = > 0.350)
EBV Early Ag ab.(IgG) Negative : 0.250 OD ..... (Neg = < 0.350)
EBV Early Ag ab.(IgM) Negative : 0.081 OD ..... (Neg = < 0.350)
Comment: Results suggestive of past (latent) EBV infection.
 

sometexan84

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Dr Chia is always saying that in ME/CFS we need to test the tissues, not the blood, to get a more accurate picture of viral infection in ME/CFS. While there have been many studies finding enterovirus in the tissues of ME/CFS patients, there have been almost no studies searching for herpesviruses in the tissues, for reasons that are not clear to me.
I actually have some of my own theories regarding Dr Chia. But I won't go into all of them now....

But I will say, I don't think there would be many enterovirus tissue/biopsy studies if it weren't for Dr Chia.

I have actually seen EBV and HHV-6 found in tissue mentioned many times. If I remember to save links to those, I will and then I shall share them w/ you.

This perhaps suggests that you either have ME/CFS from enterovirus, or from EBV (or some other herpesvirus).
I'll admit that this is a possibility. And admit that I do not 100% know for sure which is the cause or which combination is the cause of the CFS symptoms. And a 3rd admission from me is that after I am 100%, I STILL might never know what it was exactly. I lean towards EBV for many reasons. If I list them out, then you'll rebuttal all those reasons, and then I'll want to rebuttal and I think in the end, after all our rebuttals, neither one of us will change their mind. :)

I got some EBV testing done (results below), but not the VCA IgM, so I don't think I can answer the poll.
You can totally answer the poll. It's an old test, so the verbiage is different. EBV Early Ag ab.(IgM) is what yours says, and done in 2005 right? The fact that it says "IgM" has GOT to mean only one thing -- the IgM antibodies found EARLY on in the EBV infection. Hence the confusion "Early" you see in your results.

And if that's the case, that also would imply that your "EBV Early Ag ab.(IgG)" from 2005 is using the word "Early" in a confusing way and that this too is referring to just the basic IgG, the VCA IgG.

If I had to guess, these results are for NA (Nuclear Antigen) IgG, VCA IgG, and VCA IgM.... in order.

If I'm right, then you never did your Early Antigen (EA) test, which I'd understand since this was 2005 and at this point I've seen enough people's old test results on here to know that Early Antigen (EA) wasn't super common at that time.

Do you still have the actual test? Could you get a screenshot? What lab was it?

Back to the EBV discussion. I think the 2019 discovery should not be overlooked - Epstein-Barr Virus Induced Gene-2 Upregulation Identifies a Particular Subtype of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

12 of 31 (38%) patients exhibited EBI2 up regulation as compared with none of 40 normal controls

1596421915817.png
 

Hip

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I have actually seen EBV and HHV-6 found in tissue mentioned many times. If I remember to save links to those, I will and then I shall share them w/ you.
I'd love to see those.



I'll admit that this is a possibility.
I am only suggesting it as a possibility or a hypothesis; but the reverse is also possible: that a patient's ME/CFS may be driven by two or more viral infections, as you theorize.



You can totally answer the poll. It's an old test, so the verbiage is different. EBV Early Ag ab.(IgM) is what yours says, and done in 2005 right? The fact that it says "IgM" has GOT to mean only one thing -- the IgM antibodies found EARLY on in the EBV infection. Hence the confusion "Early" you see in your results.

And if that's the case, that also would imply that your "EBV Early Ag ab.(IgG)" from 2005 is using the word "Early" in a confusing way and that this too is referring to just the basic IgG, the VCA IgG.
I believe antibodies to the EBV early antigen (EA) can be both IgM and IgG. See this graph:

EBV antibodies.png

Source: here



Do you still have the actual test? Could you get a screenshot? What lab was it?
The test result text I quote above is verbatim from the email of my EBV results sent to me by the testing lab (The Doctors Laboratory, London).



It is interesting.
 

sometexan84

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I'd love to see those.
The HHV-6 Foundation website mentions HHV6 in tissue all over the website. Brain, liver, lungs, heart.
https://hhv-6foundation.org/multiple-sclerosis/hhv-6a-can-travel-through-the-nose-to-the-brain
Actually, I am worried about HHV-6. It's a sneaky one. I promise at some point I'll have my whole body scanned for presence of Enterovirus, EBV, and HHV-6, just to be sure. Neuroimaging scans, FDG PET/CT scan, selective biopsies if necessary. I want it ALL gone.

Remaining dormant in brain tissue - https://www.ncbi.nlm.nih.gov/books/NBK540998/
Again in the brain - https://www.psychiatryadvisor.com/h...yndrome-viruses-and-the-innate-immune-system/
In the brain, again - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6833260/
BRAIIINNN - https://pubmed.ncbi.nlm.nih.gov/7638210/

Those are all for HHV-6 though.

I believe antibodies to the EBV early antigen (EA) can be both IgM and IgG. See this graph:
I must have seen 100 articles, graphs, and lab test pages online, and this is the first time I have ever seen that hahaha. Well ok then. I guess that was a thing at some point in time. Still, have you considered getting re-tested?

The test result text I quote above is verbatim from the email of my EBV results sent to me by the testing lab (The Doctors Laboratory, London).
I think my response below is actually very important to you Hip, so don't be super quick to dismiss it.

I found this quote below from someone commenting here - https://healthunlocked.com/thyroiduk/posts/138767101/epstein-barr-virus-and-thyroid-pain. It sounds like they had the same test you did from the same place.

They list things in the same order you did, just like I thought. I'm usually right about this sort of thing.

I had to pay private for blood tests. My endocrinologist sent me to London for the tests to The Doctors Laboratory.

They did the following blood tests as listed on the results sheet:
EBNA IgG antibody
VCA IgG
EBV VCA ab (IgM)

But if you're right, then you have never tested for VCA IgM, which you should. If I'm right, then you've never tested for Early Antigen (EA) IgG, which you should. Either way, you've never tested for the 2 key elements for active infection.
 

sometexan84

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I mean, w/ all the new stuff that's come out on HHV-6, I don't see how you wouldn't be worried about it. I tested twice for HHV-6, one with ELISA and then again with IFA. LOW-POSITIVE on both. Which, we've all been taught not to worry about.

What if my super low HHV-6 is far more meaningful than low-positive serum results might suggest. And Dr Prusty sent me this in an email the other day, which makes me feel like my concerns are legitimate.

1596431282405.png
 

Hip

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The HHV-6 Foundation website mentions HHV6 in tissue all over the website.
Yes, I seen plenty of general studies where herpesviruses are found in the tissues, but I mean specifically ME/CFS studies. In order to demonstrate an association between a pathogen and disease like ME/CFS, you have to demonstrate that the pathogen is more frequently present in ME/CFS patients compared to healthy controls.

Usually when ME/CFS researchers are looking for pathogens, they take blood samples, because this is very easy and cheap. But if you want to start taking muscle tissue biopsies like the early British enterovirus researchers, or stomach biopsies like Dr Chia, this involves more work and organization. So it may just be laziness from the researchers that they look at blood rather than tissues.

Why is is important to test the tissues? Well let's take the example of temporal lobe epilepsy: HHV-6 infection has been found in the brain tissues creating the epileptic electrical disturbances (this tissue is sometimes removed by surgeons to treat epilepsy, and thus gives the opportunity of testing it).

Now if you were to test the blood of epileptic patients, you probably would not find much, because the HHV-6 infection is a low level one, confined to a small area of the brain. Indeed, this paper says:
Importantly, this specific association between epilepsy and HHV-6B has been established based not on increased antibody responses in patients versus controls but rather on the detection of viral nucleic acid and viral proteins in resected epileptogenic tissue.
So Dr Chia is basically saying that we need to be testing ME/CFS patient tissues to try to find any localized infections that may be behind ME/CFS. This may require post-mortem testing, like Dr Michael VanElzakker is doing on his vagus nerve studies, where he is testing the vagus nerve taken from ME/CFS autopsies for viruses.



have you considered getting re-tested?
I will at one point get retested with the proper EBV test. I'd also like to get retested for my coxsackievirus B4 infection. I last tested this in 2016, when I had high titers of 1:1024.

Cytomegalovirus I tested twice, both occasions with high IgG antibody levels: the last time was 206.8 AU/ml, with < 6.0 AU/mL being negative. So that's 206.8 / 6 = 34 times higher than the negative threshold. Pretty high.

So I know I have active infections with CVB4 and cytomegalovirus. Unfortunately I reacted badly to Valcyte (worsened mental health symptoms forcing me to stop), and Valcyte would have addressed any EBV, CMV, HHV-6, VZV and HSV infections, as it has broad-spectrum anti-herpesvirus action.
 

sometexan84

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Yes, I seen plenty of general studies where herpesviruses are found in the tissues, but I mean specifically ME/CFS studies.
Oh oh, yes. Thought you were referring to just the prevalence of EBV and HHV-6 in tissue. I'll do more Googling...

Cytomegalovirus I tested twice
What did your first one say? Did it go up or down in the 2nd test?

Have you looked much into full body and neuroimmaging scans, like 18F-FDG PET/CT scan, PET/CT, MRI, MRI/PET, MRS? Specifically involving this type of imaging to find infection and inflammation in the body, the brain, as well as brain functional connectivity?



(MRS) ME/CFS on left
1596484736534.png




(FDG-PET) ME/CFS on top
1596484916809.png



(FDG PET/CT)
1596485764608.png




1596485950225.png
 

sb4

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I am reading a paper on CD8 T cells and epstein bar and it says that in developing countries everyone has EBV infection by something like 10 years old, but in developed countries it's only 50% (or something) by 10 years yet by early adulthood is nearly 100%. It also says whilst EBV infection rarely produces symptoms in children, it is more likely to produce symptoms and also produce autoimmune conditions in adults.

I got ill with what I thought was bad tonsilitis in my 20s after a night out in town, but perhaps it could have been EBV are something similar? The symptoms are comparable.

I had some viral tests done on the NHS but I don't know the results other than they said they where normal. However I don't trust them. Might see if I can get my hands on the results next time I am at the doctors. As such I voted I don't know.
 
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even if it's just "I haven't had any EBV testing done".
well then there is the answer: I don't know what the test was I was given. So I had some test.

The doctor actually said-like two years ago- the lab did not give you the correct test that I ordered. So the lab did whatever they felt like? this was never fully explained, and never further resolved. And thats my medical care.

You have to have alot of energy and motivation to resolve these issues. Congratulations to all of you pulling if off somehow.
 

sometexan84

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You have to have alot of energy and motivation to resolve these issues. Congratulations to all of you pulling if off somehow.
That's what's really unfortunate here. If I ever had a more severe case, I wouldn't have had the energy to get things done. It's like, the deeper you are into ME/CFS, the harder it is to climb your way out of it.
 

Hip

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What did your first one say? Did it go up or down in the 2nd test?
It seemed to go up a bit at the second test:

I was hit with ME/CFS after a viral brain infection with CVB4 in 2006.

Then my first cytomegalovirus IgG test was in 2008: result was 7 IU/ml (Negative < 0.4 IU/ml). So that's 18 times the threshold for negative.

Second cytomegalovirus IgG test was in 2018: result was 206.8 AU/ml (Negative < 6 AU/ml). So that's 34 times the threshold for negative.



Have you looked much into full body and neuroimmaging scans
Not that much.

I believe the first scan to demonstrate neuroinflammation in ME/CFS was the 2014 Japanese study. I remember when this came out; it provided the first evidence of inflammation in the brain. Cort wrote an article on it.

The levels of neuroinflammation in ME/CFS are much lower than what is generally classed as brain inflammation by doctors, though. So you need sensitive scans to detect it, like the ones the Japanese used. And these scans are getting more sensitive all the time.

Inflammation is not direct proof of infection though. It is a pity we do not have some futuristic body scan which could detect the presence of pathogens anywhere in the body tissues or organs.


Interesting ME/CFS scans you posted.
 
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morgan_25

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No, 100%, you're totally right. By no means is this super scientific, nor should it be seen as representative of the general ME/CFS community. I'm hoping people take it for what it is. I mean, I think most people here get that.

"92.3% of us..." just referencing "us" as in, those that answered the Poll.


For EBV, active viral infection info in my last post. You can find the same info online.


I think you should redo the calculations and figure out how to add in the fact that people don't know they have an active EBV infection. That's what this poll was about. I believe the numbers are WAY higher than 16%. BUT, again that's not what this thread is about. I did this to demonstrate that it's a prominent virus and that people don't test for it enough, and that the test results are difficult to interpret.


Ok, but that is a really roundabout way. So many possibilities for error.

The UK study is 1998. I can't imagine that could still hold relevance.

I never had mono symptoms. I think many w/ re-activated EBV would never have been involved in a mono study. Those that got EBV at whatever age, were asymptomatic, and later on it got re-activated triggering CFS. I think there's a decent chunk of ME/CFS that fit what I'm referring to here. And the calculations you mention would not include them at all.

"About 90 percent of people are infected at some time in their lives with Epstein-Barr virus (EBV)"

It has less to do w/ people that have or had mono symptoms, and more to do with 1) active EBV infection and 2) active EBV infection that triggers to genes that induce CFS symptoms.

The way you're calculating seems super difficult. Maybe impossible. What I'd do is take all the most recent EBV/CFS studies and average them all together for a closer look at EBV involvement in ME/CFS.

Btw, I believe my enterovirus caused EBV reactivation. And then that EBV reactivation caused CFS symptoms for me.

At this moment, the #2 choice in the poll has been chosen the most. Which means EBV RE-activation. This includes me. And I guarantee you, out of the (6) of us that put that answer, most of us will not recall having mono ever in our lives.

Btw, where's your vote mr hip?
I agree I think there are so many different variables. I don’t know how common it is, but what about people like me who have actually had the initial EBV illness for the rest of their lives and are completely unaware of it? I definitely knew I had it when I was fourteen because I did have symptoms, but my doctors never retested me and I never felt like I got better, just kind of learned how to deal with it, until it finally disabled me this year.

Of course, I am completely aware of my illness now, but for the past eleven years, I had no clue what was going on and I most certainly never would have associated it with the EBV. All I knew was that was when my life took an unexpected term. We all hear things about ME and EBV and stuff, but a lot of times people are not truly aware of the risks and the seriousness of these illnesses, just like me when I was younger. Totally just shrugged it off.
 

sometexan84

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Then my first cytomegalovirus IgG test was in 2008: result was 7 IU/ml (Negative < 0.4 IU/ml). It seemed to go up a bit at the second test:

So that's 18 times the threshold for negative.

Second cytomegalovirus IgG test was in 2018: result was 206.8 AU/ml (Negative < 6 AU/ml). So that's 34 times the threshold for negative.
Damn dude. I'd say it went up multiple bits :jaw-drop:

Have you ever considered that Valcyte might cause a pretty bad herx reaction for you, and that it's possible it could help you if you weathered the storm? That's a silly question, because of course you have considered that, you're @Hip! Does it scare you to try again?

Inflammation is not direct proof of infection though. It is a pity we do not have some futuristic body scan which could detect the presence of pathogens anywhere in the body tissues or organs.
Well I mean yea, that's kind of what I've been looking around at. You might be surprised. I only recently started looking into it, so I'm no expert yet. But there appear to be lots of potential solutions involving non-inflammation based "futuristic body scans" to detect infections in organs, musculoskeletal infection, even the brain.
 

Hip

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Have you ever considered that Valcyte might cause a pretty bad herx reaction for you, and that it's possible it could help you if you weathered the storm? That's a silly question, because of course you have considered that, you're @Hip! Does it scare you to try again?
It's not just Valcyte that does this, but unfortunately other drugs and supplements too. I had similar side effects from tenofovir, another drug I really wanted to try. The main mental health symptoms I get hit with when taking certain drugs are: depression (bad, but I can handle it to some extent) and some mild psychosis-like symptoms (the worst!). Valcyte and tenofovir both triggered the latter.

Immunomodulator drugs and supplements I find tend to affect mental health the most (which makes sense, given recent theories that mental illnesses may be caused by immune activation / inflammation in the brain).

If a drug does cause mental health side effects, usually I will try a course of that drug more than once, but if it consistently causes these side effects, then I just stop taking it.

My mental health has been ropey ever since the viral encephalitis I had, which caused some mild brain damage and triggered the ME/CFS.

Even oxymatrine I was not able to take for several years, because it dramatically worsened depression. But as I gained some health, I found I was able to take oxymatrine (unfortunately it did not help my ME/CFS). And GcMAF I am still not able to take, due to its immunomodulatory effects worsening mental health. So a lot of good ME/CFS treatments I am not able to test out due to these side effects.

However, if I can find something that bolsters mental health, then I can go back to Valcyte and tenofovir.
 

Hip

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How did you diagnose encephalitis?
It was my own diagnosis, because my doctor would not believe me. I'd caught this nasty virus in 2003, which started as a chronic sore throat, but over the next few months sequentially started infecting more organs: it breached into my nose and sinuses, then into my stomach, and then intestines, causing chronic symptoms in these organs. So I was aware I had a virus which would not go away, and which had a tendency to slowly infect more organs.

Then one day while out running in 2005, I had some sort of dizzy episode, which lasted only a short time, and after that I found I'd totally lost my sense of smell, I was unable to recognize people I knew (lost facial recognition ability), I could no longer read (except for very short phrases of a few words), had my emotional brain removed (if felt like that anyway), and I lost most of my sense of empathy (I used to be quite a good reader of other people's minds, but lost that skill in one fell swoop).

At the same time, after this episode I was hit with an extreme level of anxiety and severe internal mental tension (which was to last for a horrendous 8 years, before I found some effective treatments).

So I know that something hit my brain in a bad way on that day in 2005, and a brain infection seems the most likely explanation, given I had this virus which has a propensity to jump into and infect more and more organs.
 
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