NIH isn't adequately funding CFS viral research because they believe the cause is unknown and this needs to change

[SWAlexander]

What treatments do you do specifically for varicella yourself and for symptoms like headaches etc? Where did you get the shingles rash and did you get the 2nd infection in the same spot??

I never was successful with pharmaceutical products because of the side effects such as stomach and colon pain. I switched last year to a long-term natural product using V9 in intervals, (since it is also an anti-coagulation) when symptoms appear. https://www.vedicinals.com/product/vedicinals-9/

No. Shingles never appeared in my case at the same spot. One neurologist mentioned the possibility, since I have Tarlov cysts also known as meningeal cysts, that shingles will appear in the area where nerve root cysts are filling up with fluid. I could not find evidence for his statement, which does not mean he was wrong.

The pain in the back toward the front was always the first indicator before blisters appeared.
The most severe back pain however I experienced twice came just before I had whole-body shingles without ever developing the typical rash.
Symptoms: highly sensitive to touch, burning sensation. I could only wear very light cooling clothing and had to sleep on my belly. My head was bursting with pain, and my sensory system was in turmoil, for over a week before symptoms slowly began loosing up.

I experienced the same symptoms again, especially in the head after I had sepsis after back surgery.

 

[SWAlexander]

But what about the NIH ME/CFS intramural study?

I am in a wait-and-see mood.

 

[SWAlexander]

Even though this research is about Covid, I ask if "cortical thickness" can be related to other viral illnesses.

Cortical thickness alterations and systemic inflammation define long-COVID patients with cognitive impairment
https://www.medrxiv.org/content/10.1101/2023.07.21.23292988v1​

"Preliminary evidence suggests distinct alterations in brain structure and systemic inflammatory patterns in specific groups of long-COVID patients."

 

[SWAlexander]

No matter how hard WE try Herpes will be our shadow for life unless SCIENCE finds a way to eliminate this and other latent viruses in the bone marrow. ​

Reactivation of herpesvirus type-6 and IgA/IgM-mediated responses to activin-A underpin Long COVID, including affective symptoms and chronic fatigue syndrome.​

Reactivation of HHV-6, SARS-CoV-2 persistence, and autoimmune reactions to activin-A combined with activated immune-oxidative pathways play a major role in the pathophysiology of Long COVID as well as the severity of affective symptoms and CFS due to Long COVID.
https://www.medrxiv.org/content/10.1101/2023.07.23.23293046v1

 

[SWAlexander]

I'm not sure if my headaches are really migraines.

Some example.

Migraine Primer from Netter Concise Neurology

 

[heapsreal]

Some example.

Migraine Primer from Netter Concise Neurology

Interesting timing that we are talking about this. I had to see an endocrinologist for an empty Sella found on my recent mri. It houses the pituitary gland. Basically my pituitary gland is flatten and on the mri the Sella appears empty. The endo said my pituitary gland is functioning OK but because it is flattened its mostly due to increased intracranial pressure. My hospitalisation for headaches at the beginning of the year where I also had an mri, the report said benign increased intracranial pressure. The endo then said it is most likely the cause of my chronic headaches etc.
I think I mentioned it in an earlier post, but I Basically have a constant pressure going on all the time in my head but at varying degrees. At its severest I guess it looks like a migraine as the pressure amps up to throbbing and I start throwing up.
This pressure is different to brain fog I use to get from cfs. Toprimate the medication I take for this is used for migraines, seizures and intracranial pressure.
I'm now waiting to see an ophthalmologist to check the pressure around and behind my eyes. The endo did mention they sometimes do a lumbar puncture to measure the pressure within the brain stem and brain.
Just my own research on benign increased intracranial pressure, I've come across where they have found people with lyme disease and other infections eventually the cause. So it's a process to work through it.

 

[SWAlexander]

intracranial pressure

When you have a headache do you also have blurred vision?
I do, especially in the left eye. According to an MRI, my pituitary gland seems to be working, but I have also very low cortisol.

 

[heapsreal]

When you have a headache do you also have blurred vision?
I do, especially in the left eye. According to an MRI, my pituitary gland seems to be working, but I have also very low cortisol.

No blurred vision.

 

[Husband of]

I was just surfing around the internet, jumping from wave to wave as one wave split off tangentially from another, I found myself wondering - could my wife's rash be meningococcal, and could there be others diagnosed with cfs that have such issues, so I came here, not expecting to see a current conversation on this.

The viral involvement of the meninges can involve the cortex and brain itself, leading to

I don't know if it's related or not but there is a chronic reoccurring form of varicella meningitis called mollarettes and it sound very much like cfsme but caused by varicella specifically.

And connected to varicella no less, which I have also wondered if could be behind my wife's rash.

She is going to get her rash tested, but I don't know what that will entail so maybe I can see if they can test it for varicella, Roseola, and chronic meningococcal meningitis.

 

[SWAlexander]

I have also wondered if could be behind my wife's rash.

I also have a severe rash, - again. How does your wife's rash look?

 

[SWAlexander]

About Virus Reactivation.
This is the second in a series of three films with Dr Bhupesh Prusty.

 

[SWAlexander]

Bhupesh Prusty

His video interview: