Did your cfs start due to Epstein Barr?

[Rufous McKinney]

you worked doing water samples at Tahoe.

actually I was looking at samples from other Sierra Nevada Lakes but not Tahoe. I literally had a 10,000$ microscope in my office, that could discern nannoplankton down to 1000 microns.

while ME might not have "something in the blood" that will cause ME in the recipient,

Except for at least two researchers have found something transferable that needs further elucidating.

but I stopped donating blood

I never started, given my chronic Epstein Barr diagnosis, I figured nobody needs my blood and I"ve never donated.

 

[Rufous McKinney]

so they take the safe solution, that "We dont' know for sure that it isn't contagious, so for public safety,

But we publish the latest Medical Textbook puts ME/CFS into the Psychological Chapter. Nice of them, but we won't be forgetting THAT anytime soon.

 

[waitingyet]

@waitingyet Me- Absolutely! 1986 (39 years ago). I was extremely ill literally overnight. Did not test positive for mononucleosis, but did test positive for acute EBV. It attacked my nervous system. Was bedbound for 3 years then bounced back and forth for decades from between 30%.-70% while collecting an assortment of other co-morbid conditions. Eg; Hashimoto’s, sleep apnea, tinnitus, POTS, etc.

Because of how the EBV virus initially impacted my nervous system, I later developed severe sensor-motor large fiber axonal Polyneuropathy. As I’ve aged (73 now) my ME/CFS has worsened again and I’m mostly housebound. Plus the additional fatigue and nerve damage in my legs caused by the neuropathy has caused me to need an electric chair when I need to go out.

I recently started with a smart new young neurologist who explained why/how my initial EBV infection triggered ME and damaged my nervous system. I mentioned that in the past I’d had drs try to tell me I needed a psychiatrist. Lol! But he was adamant and said no, mine is a post-viral neurological disease. He explained that not all EBV infections present with respiratory symptoms (mine did not). I knew what he said was true from decades of doing my own research, but it was extremely gratifying to hear a neurologist confirm it and add some extra information.

I believe EBV and the way some of us respond to it. will end up being the culprit for many ills.

How is your tinnitus? Mine began not inmediately after catching EBV but some years later. Only in a side, is pulsating, very annoying.

Tinnitus is considered a symptom of ME/CFS? When I read about CFS symptoms sometimes appears tinnitus but other times they not mention it.

 

[stellaluna]

I assume you are a "younger person"......who has had access to the Internet which is now our Encyclopedia of All Things.

I see no reason that an Eleven year Old would Also be capable of suggesting something to your doctor because you talked to people and read about it.

Yes but it wasn’t based on internet knowledge. I knew I had cold sores on my lips and I had a habit of touching my face a lot. I knew that cold sores were caused by a virus and that antibiotics don’t work on viruses.

 

[2Cor.12:19]

How is your tinnitus? Mine began not inmediately after catching EBV but some years later. Only in a side, is pulsating, very annoying.

Tinnitus is considered a symptom of ME/CFS? When I read about CFS symptoms sometimes appears tinnitus but other times they not mention it.

@waitingyet My tinnitus started gradually at first (off and on) roughly 15-20 years ago, about 15 years after first getting ME/CFS. Hard to keep track as I’ve had ME for 39 years. Anyway, it’s a non stop high pitched tone, sometimes several going at once, that’s been going on for over a decade. When it began It coincided with the progression of the neuropathy in my feet and legs, POTS, occasional bouts of vertigo, etc. Tinnitus can have many causes but my neurologist confirmed that mine is related to my Polyneuropathy which began . when I initially got sick with the EBV virus which attacked my nervous system and which turned into ME/CFS. He believes the whole process that happens when EBV triggers ME/CFS is an autoimmune one, which a lot of ME/CFS researchers also believe. He explained how peripheral nerve damage can cause tinnitus, but I don’t remember all he said. Brain fog. lol!

Here’s some info https://treblehealth.com/neuropathy-and-tinnitus/

 

[Rufous McKinney]

Tinnitus is reported to increase from hearing loss. The nerves, having lost inputs, make up inputs perhaps.

What I find odd in my case, is my right side is far far more sick than my left. but my hearing loss is far greater on the left side.

Of course it's a whole body thing, but still. I can just list all these symptoms that are far worse on my right side. Including neuropathy which correspomds with: the far outside of my right hand, right elbow, right breast, right thigh, and right side of my right food; all have neurological issues. My tongue: shows all these right side problems.

Nobody with ME reports their breast is sick but mine is. That has gotten less noticeable recently with some other improvements I hope ARE improvements. I can only describe it as a very very weird feeling. My right nipple also mostly vanished (subcutaneous fat loss and tissue missing).