ME caused by viral or auto immune encephalitis

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Hi all,

I am sure this is an old idea that's appeared before but I've never see anyone mention it. I've been reading about viral encephalitis and auto immune encephalitis to explain my primary symptom which is now persistent inflammation of the brain and base of the skull along with neck stiffness. That progresses to dizziness/muscle fatigue, gastro symptoms and then everything else generally in that order.

http://www.irishhealth.com/askdoc.html?q=2462&qasect=8

The description here explains what many of us have faced in terms of our symptomatic picture. But could it be that when we got sick with our mysterious viral infection, which many of us have in common, that our brains underwent brain damage due to the encephalitis and this then caused our brain tissue and cells to behave abnormally. This site says it can lead to psychological symptoms due to hormone dis regulation which would explain the mood changes and sudden anxiety/depression around fatigue onset (PEM), https://www.encephalitis.info/physical-difficulties-after-encephalitis . It also highlights the headaches and other symptoms that afflict many of us.

So could it make sense that (some) not all of us have faced brain injury after our bodies have fought off a viral encephalitis like infection? Or another virus like the flu has triggered auto immune encephalitis? It doesn't explain the collagen issue for those that have it, but I don't know how you would test for this if someones skull and joints are not hyper mobile/unstable?

Could this also not explain the brain inflammation found via the PET SCAN's from last year's study - which showed brain inflammation in several ME patients?

Also would an MRI pick up mild brain damage caused by encephalitis? I went to one of the UK's worst hospitals for my MRI, which makes me not want to trust it. Does anyone know of any UK doctors in the north west who diagnose these conditions and can look into them? I've asked the same question of the encephalitis organisation above.

I'd be interested to hear peoples thoughts and experiences.
 

Wishful

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The page doesn't say 'brain damage'; it just says that the immune system gets stuck in an abnormal state. To me, 'brain damage' implies long term cellular or structural damage.

Some of us experience abrupt switches back to normal function. This may only last a few hours before abruptly switching back to regular ME dysfunction. A theory for ME needs to include this rapid switching ability. A chemical imbalance or a change in DNA or RNA transcription rates would fit. Cellular or structural damage doesn't fit the time frame, as far as I understand it.

I doubt that MRI scans would be able to identify such low-level changes such as modified transcription rates. There have been plenty of MRI scans of PWME, which show abnormalities, but nothing so far that clearly points to a specific cause,

Also, keep in mind that viral infections aren't the only trigger for ME. To me it looks like the trigger is immune activation, regardless of the specific cause. The body has mechanisms for returning to normal function once the immune system finishes its work, and some of us seem to have a problem with that. Some feedback loop is keeping us in this abnormal state.

I really strongly doubt that you'll get any useful information from an MRI, unless you have some additional disease other than ME which does happen to show something on an MRI scan.
 

Sidny

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I would posit that the majority if not all of ME like diseases are the result of encephalitis or encephalopathy even if it wasn’t clinically identified (ie microscopic damage caused by some sort of foreign agent/pathogen and the immune response to it. Even if overt encephalitis isn’t involved I think a pathogen breaching the CNS is the probable culprit and if it’s any number of HHVs or enteroviruses they’re likely altering host cell metabolic functions (the result of which is our symptom complex)

As far as the connective tissue issue, there’s the genetic classic EDS as well as various forms of degeneration caused by pathogens themselves and the enzymes they release that destroy those supporting structures.

EBV, HSV, Coxsakie virus, molds, and Lyme are all known to effect connective tissues.

Collagen pathogen connections
https://www.me-pedia.org/wiki/Collagen#Collagen-degrading_factors

 
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Wishful

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Even if overt encephalitis isn’t involved I think a pathogen breaching the CNS is the probable culprit and if it’s any number of HHVs or enteroviruses they’re likely altering host cell metabolic functions (the result of which is our symptom complex)
Some ME seems to be triggered by vaccinations. Mine seemed to have been triggered by a tetanus booster, which isn't an active pathogen. That leads me to believe that it's the processes involved in the activation of the immune system that triggers ME, rather than whatever triggers that immune activation.
 
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Even now whenever I get a virus or cold or a bug it takes me much longer to get over it than anyone else, as though my body is slower to return to any sort of “normal”
 

kurt

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Even now whenever I get a virus or cold or a bug it takes me much longer to get over it than anyone else, as though my body is slower to return to any sort of “normal”
I actually get the virus or cold two or three times before my immune system triggers the off switch. But colds and viruses do end for us. They are just slow to do so. Which makes me think this is more than just a broken immune off switch. It seems there is an underlying energy deficit. Perhaps that extends to making the immune system sluggish. It may be that the visible immune events are quite downstream of the beginning of the pathology. Whatever it is.
 
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I’m a case of ME/CFS with chronic systemic HHV-7 infection, including HHV-7 encephalitis. I have delta brain waves while awake (slowest brain waves) on a QEEG and severe global hypoperfusion on SPECT due to the damage from chronic viral brain infection. My brain in the most affected but I’ve also had the infection flare in individual organs causing them to fail for periods of time. For example my gallbladder became so inflamed that I needed surgery in 2013 and then I had hepatitis in 2015 and then gastritis, enteritis, and colitis with hhv-7 isolated from the tissue in 2018.

I had immune dysfunction, POTS, MCAS, and hypermobile EDS from childhood though and the encephalitis started when I was 21 (I’m 29 now). I’m wondering if possibly the EDS and frequent dislocations of parts of my spine caused the dysautonomia and immune dysfunction. I’m trying to get evaluated for CCI/AAI.

I tried Valcyte with no response and am going to be starting IV Vistide next. Ideally I should be on IVIG at the same time but we’re having a hell of a time fighting with insurance.