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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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News of replication of WPI XMRV study...

C

Cloud

Guest
My latest theory is that we feel the fatigue when our immune system is working. Just as when we get a flu virus (by we, I mean humans), and the flu is doing its destruction for three days. But the sick feeling is from the immune response.

So, I think there is an ongoing see saw battle going on against XMRV in us, also against the reactivated viruses. So the virus is being destructive on our good days. We do too much and the cortisol, hormones or whatever turns on that virus. Then, our immune system kicks in to fight it. And that's when feel fatigue. But, for many of us, our immune system starts to win the battle, and so we feel better. And then we do stuff. And the virus starts replicating from all that cortisol or hormones. And we don't know it. And it is an endless cycle.

This is why we have push and crash. Unlike HIV that wins the battle and kills the host. We are in a constant Vietnam type battle in our bodies.

Call this Tina's #2 hypothesis.

Tina

XMRV certainly could explain many things, including stress intolerance and Post Exertional Malaise
 
C

Cloud

Guest
Hi Tina

I like your hypothesis. It doesn't entirely fit my experience though.

Although my relapses are very occasionally linked to overdoing things, mostly they come completely out of the blue. I can be 95% for months, and not under any stress or in contact with anyone with an infection, and then suddenly one day I feel I have to sleep and that's it for 3-4 months -bedridden with severe flu-like symptoms, severe pain, can only walk a few steps, feeling desperately ill.

The pathogen(s) seem to have a life of their own.

Jenny

Sometimes my earliest symptom when starting into a flare-up, is to begin voiding (pee) off more fluids than I had taken in over the prior several days. It's a lot and happens fast....sure sounds HPA to me
 

Lynn

Senior Member
Messages
366
tina hypothesis 2

Hi Tina, I like your hypothesis.

I am wondering if that is what is going on with me while I am taking Low Dose Naltrexone (LDN). I had the most amazing energy for the first two days. After those days I was back to my normal CFS energy for about a week and then felt terrible for another week.

I then took a week off of the LDN and started again. I had one good day and felt awful with depression and high anxiety (very unusual for me) after that. I have been trying a very low dose every 4 days and am still feeling terrible. In fact I think this is the worst I have felt with this illness in the 13 years that I have had it.

I wonder if the LDN is kicking up my immune system and I am paying for it. Also, I wonder if I will eventually be able to feel better on the LDN in I just wait out these negative effects?

Lynn
 
Messages
3
Crazy thought here...


Take an immunosuppressant with beneficial medications that over-stimulate the immune system.


I know it goes against what we think is good but it might work under some circumstances. Of course, under the supervision of a skilled immunologist.

Thoughts ?
 

oerganix

Senior Member
Messages
611
duendeni

Your description of what I, too, experience is excellent. I need to print it out and show it to the next person who asks me how it feels, when I am so weak and sick I can hardly think or speak.

My one description of the heaviness of the fatigue, that some people have been able to grasp, is that it feels like the normal 1 gee of gravity here on Earth has changed to 3 Gs of gravity, or like I'm wearing magnetic boots and walking on an iron surface. I often stub my toes, thinking my feet are higher above the ground than they really are.