What does it mean to have multiple chronic viral infections AND multiple autoimmune conditions?

sometexan84

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I very much want to fully understand all steps involved in my chronic fatigue. Like, what started it? What did that lead to? Then what did THAT lead to? etc. Until I know the full story, I might never be able to optimize my body for full energy.

I understand this: Acute Viral Infection >> Now it's dormant >> Some trigger that reactivates it >> now Chronic active viral infection >> Multiple Autoimmune Diseases

What I don't understand is why you'd have multiple active chronic viruses in your body. And multiple autoimmune things happening. Like, what's causing what here?

So far, I have EBV, enterovirus B (CVB 4, CVB 5, EV11), paired with Hashimoto's and Guttate Psoriasis.

If anyone knows the order in which this could occur, or why/how, it would be very helpful and much appreciated. Is it maybe that there's a trigger that can just reactivate all your dormant infections all at once?
 

Mary

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@sometexan84 - I think if we had the answers to all your questions, we'd have the answer to ME/CFS! Those are the questions we're all asking ourselves. I think most of us have viral reactivations that normal healthy people don't get. Many have co-morbid autoimmune conditions. Our immune systems, to put it scientifically, seem to be screwed up. (sorry, that's the best I can do! :p) There's talk of inflammation etc. But what is at the root of it all is the big unanswered question!
 

Treeman

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As Mary said, no one knows were trying to understand it too. I have ana and tpo auto immunity antibodies and mild hypogammaglobulinemia. They can all be traced through looking at research to a chronic EBV infection. My illness was started by an EBV infection. However, having stated that, it’s not that straight forward as other infectious agents may also be at work or just an over reaction to the infection. I’m treating the EBV hoping slowly over time my health will improve.
 

sometexan84

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Just spit-balling here. Ok, so we don't know. But, for the sake of sharing opinions, and logical thinking, what do you think of these potential scenarios? If you had to guess, which makes the most sense?

Scenario 1) New Infection >> EBV Reactivation >> Immune System Changes >> Other latent viruses reactivated

New viral infection blocks interferon gamma. Interferon gamma can no longer keep EBV at bay. EBV is now reactivated. EBV messes w/ immune system as this virus infects our immune cells. Now there's immunologic dysfunction, allowing other dormant viruses to reactivate and spread.

Scenario 2) Psychological Stress >> EBV Reactivation >> Immune System Changes >> Other latent viruses reactivated
Same as above but with stress hormones (epinephrine, norepinephrine and cortisol) as cause for EBV reactivation.

Scenario 3) Enterovirus Infection >> EBV Reactivation + Immune System Changes
Enterovirus messes w/ immune system (dysregulation of immune pathways via miRNA expression). This lays the groundwork for EBV reactivation. Or perhaps enterovirus more directly causes EBV reactivation, in addition to immunologic dysfunction.
 

lenora

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Hi@sometexan84....I would say it depends on the individual. In some it could be #2, which could be fairly common in the age group this seems to start the most in or, in other cases, one of the other nos. It would be really, really nice to have an answer....I've been searching for approx. 34 yrs. now and I still don't have any answers. All of us have a lot of questions, but what we really need would be a large set of band-aids (at the very least) to cover the symptoms until the big day comes....when we know what causes what and why. Until then, we play the waiting game and try to stay as healthy as possible.

All of our cases are similar, yet different. Not so long ago, I'm talking my 34 years or so, we didn't have trained researchers who even knew what they were looking for. We also didn't have any money, and the govt. was trying to get over what the AIDS epidemic had cost us. Trust me, it wasn't looking for another virus of unknown etiology. So we languished and kept up with the latest theory. There have been a lot of them over the years, so perhaps that's why you'll find people less than anxious to fall over #1, #2 and #3. We get worn out after awhile; meanwhile research has never been better and answers are coming. And those band-aids I was talking about...trust me, they're going to be the bridges until the cure is found.

Personally, I also suffer from neurological diseases that came before my ME. Now that I look back on things, I realize that I had this since my 20's, but didn't know it because it takes time for symptoms to accumulate. Most of us have, for example, IBS (Irritable Bowel Syndrome), which then leads to something else, and on and on it seems to do.

A lot of body systems are affected, some are the same, but then there are generally differences in all of us. We're not carbon copies, which in itself makes it harder to study. We pick up so many secondary things, such as attacks of shingles (I've had 4 of them, 3 at one time all occurring one after the other). They were devastating because they become worse each time you have them. There are now antivirals which shorten the time limit of the illness itself, and the chances of post-herpetic infection, or bad pain that lasts and lasts for who knows how long afterwards And we don't know...in some people it's a few months, in others it never goes away. There is also a new immunization that's worth getting, but you have to be over 50 yrs. of age. Check with your Dr., there may be a way around that I'm not familiar with. You see all of these things further weaken the body and leave us open to infections and more illness. I'm a 73 yr. old female and not many have put in the years that I have. In the future they'll outlive me, but I was never able to return to work, to school, to my old life because illness became my life. Like MS this will stay stagnant in some fortunate people and they can get on with their lives. For the majority of us, that isn't the case. The younger ones make me especially sad as they haven't had time to make a life or family for themselves. This is hard to deal with and my best recommendation would be counseling to help you and/or loved one(s) learn how to handle it.

I'm also from Texas. I live in Dallas, where do you hail from? I'm not putting you off, I've tried to answer as truthfully as possible. I'm not up to the minute in the newest research b//c thus far none of it has borne too much in the way of difference than the old. The day will come though, and we'll all be excited about an answer. I'll be especially excited, not because it will do anything for me at this age, but because I've wanted one for so long and yet the years have flown. In my case I also have considerable pain because of the neurological conditions. When our first pain med came out, it was like bottles of champagne had exploded and yet by today's standards it was not much of anything....but the point is that it was something. It allowed many people to return to work and do some of their dreams. I don't know if it kept symptoms at bay for long, but it did dampen the intensity of them. Little by little we're getting there. As you'll find, there are some very intelligent people on this forum so questions are welcomed. It's just that no one can give definitive answers...trust me, we'd love to, but they're just not available.....yet. Donate for research, that's what will make the difference. If you want your dreams to come true, find a way to raise money for the all important research. I'm wishing you well, and hope you have improvement sooner rather than later. Yours, Lenora.
 

Treeman

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@sometexan84 I would say any and maybe all of the above scenarios. We are all different and they could all occur with someone, I'm just guessing, but we all are in the absence of further research.
 

Rufous McKinney

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If you had to guess, which makes the most sense?

I had severe allergic reactions at 1 year old... to alot of foods and other factors....long long before I officially got EBV at ten years of age.

My life long "mild" version of ME (55 years I think)...became much worse, after a Scenario 2 Event (severe psych stress); but that event was followed by a series of gastroenteritis involving apparent viruses (unless it didn't) and after those severe illnesses, I became much worse.

I considered that the gastro events did a major release of Nitrous Oxide- which might have increased my level of trapped (using Phair's theory).

I do not know if I have these other viruses as I don't get many tests.
 

ljimbo423

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Just spit-balling here. Ok, so we don't know. But, for the sake of sharing opinions, and logical thinking, what do you think of these potential scenarios? If you had to guess, which makes the most sense?

After 13 years of research and many, many thousands of hours. I've learned that my ME/CFS started in my gut, with "very severe dysbiosis" (found through testing) and probably leaky gut.

This is what has and is causing my immune system problems. I've improved my health from severe and mostly bedridden to a solid 6 on the disability scale here. I do 6-7 hours a day of light work, without issue and never spend time in bed. Except to sleep.:);) When I do get PEM, it's usually mild and it never lasts more than a day.

I made these improvements by treating my gut as aggressively as I've been able to. I think the high antibodies to viruses like EBV etc, found in so many ME/CFS patients is caused by immune dysfunction from dysbiosis and possibly leaky gut too.
 

sometexan84

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You are assuming your symptoms are caused by an infection. Maybe not. Infections are very common. ME/CFS is'nt. Bit of a problem dont you think?
No not really. I wasn't assuming anything. Just throwing out some possible scenarios and asking for opinions. There's def a ton of possible scenarios.

Chronic active viral infections and re-activations aren't common though. Also, this thread is about possibilities involving multiple infections and multiple autoimmune conditions. As opposed to what causes CFS.

I do ask a lot of questions on these forums, and I totally understand the reactions I often get. I know this seems random, but I think it's relevant here. I do love these quotes.

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sometexan84

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After 13 years of research and many, many thousands of hours. I've learned that my ME/CFS started in my gut, with "very severe dysbiosis" (found through testing) and probably leaky gut.

This is what has and is causing my immune system problems. I've improved my health from severe and mostly bedridden to a solid 6 on the disability scale here. I do 6-7 hours a day of light work, without issue and never spend time in bed. Except to sleep.:);) When I do get PEM, it's usually mild and it never lasts more than a day.

I made these improvements by treating my gut as aggressively as I've been able to. I think the high antibodies to viruses like EBV etc, found in so many ME/CFS patients is caused by immune dysfunction from dysbiosis and possibly leaky gut too.
Love it! You were determined, you put the hours in, and figured it out, despite what others may have said.

You are like me. It's only a matter of time before I figure out the origin of my illness, like you have with yours. Kudos on your research, your determination, and your recovery!
 

ljimbo423

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Chronic active viral infections and re-activations aren't common though.

They seem to be pretty common from what Ron Davis found. This is what Ron Davis found in searching for viral reactivations in ME/CFS. They used a very sensitive PCR test called a multiplex, so they wouldn't get false positives.

30% of the "healthy controls" had viral reactivations-3 out of 10. That was double what they found in ME/CFS patients. Only 15% of the ME/CFS patients had reactivations - 3 out of 20= 15%.

There were 20 ME/CFS patients and 10 controls.

As healthy controls they had no symptoms. So even if someone has a reactivation, as in these HC's, there can be and I believe often are no symptoms.


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ljimbo423

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Love it! You were determined, you put the hours in, and figured it out, despite what others may have said.

You are like me. It's only a matter of time before I figure out the origin of my illness, like you have with yours. Kudos on your research, your determination, and your recovery!

Thank you.

You are exactly right! That's exactly what I've done! Best of luck to you!!!:thumbsup::thumbsup:
 

ljimbo423

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@ljimbo423 Do you have chronic enterovirus B infection?

No but I was tested for gut dysbiosis and the findings were "very severe dysbiosis". There are many things that caused it.

Gastrointestinal infections both viral and bacterial, dozens of courses of antibiotics over many years, a bad diet-high in sugar and junk food, chronic stress as well as other things.

These things all cause dysbiosis and often leaky gut too, which I believe are causing my ME/CFS.
 

sometexan84

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But you have been tested for enterovirus, right?

EBV can be involved with the gut. But, enterovirus is the main culprit for the intestinal dysbiosis that I've found thus far.

Have you tested for Toxoplasma gondii (T. gondii)
 
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