Partial remission for a day

[gregh286]

The binary nature of remission that some are seeing implies that there is a malfunction in the endocrine system. Some research is showing an involvement in the mitochondria. Short answer to your question; yes, we will find a 'cure', and it will likely involve mitochondrial function.

But I also suspect that this might turn out to be similar to diabetes where diet, exercise and improved gut health can help those on the margin, but others require medication.

It must shut down Krebs cycle. I can feel the lactic building in crash. So binary. Last year I had days where couldn't move barely. Week later could run 10k and often did. Sometime no payback from it and sometimes payback from small exertion. I don't correlate physical expenditure with energy available at al. When it wants to shutdown there is jackshit you can do about it.
Of course we are supposed to adhere to keeping energy etc....but ffs you are only on the planet once.

All the pacing and stuff we are supposed to do just doesn't fit in my situation. When I'm up im up and down im down. No amount of pushing or resting makes one iota difference.

Tell someone that think you're bananas. I have serious case of on/off button. Massive swings.

 

[pcmenten]

Another possibility is that the immune system is somehow being disabled and allowing a smoldering infection to flare. In the case of those of us who seem to have multiple smoldering infections, it results in being chronically sick with a minimal immune response. When we hit upon a combination of remedies that causes the immune system to reactivate, we temporarily feel better. In fact, if this were the case, getting a cold or flu might actually make us feel good, not bad, because that prompts the immune system to become active again. Other potential triggers of partial remission might include getting a vaccination such as a flu shot.

 

[pcmenten]

Odd coincidence; I'm having a day of remission. Feels incredible to feel normal.

I have been taking Doxycycline for Lyme since June 28. I use Saccharomyces boulardii yeast to stabilize my gut. Yesterday I resumed taking Valtrex for EBV. Presto! Remission (for a day). We'll see how long it lasts. I have also resumed taking Artemisinin, a broad-spectrum antimicrobial.

Also notable is that I increased the amount of Doxycycline from 100 BID to 100 4x.

Wish me luck.

 

[Little Bluestem]

I can plan and complete things, usually little stuff like cleaning the refrigerator, clearer thinking, considering socializing.

Little Bluestem does not recognize anything that has to do with the cleaning of refrigerators.

We'll see how long it lasts.

So hows it going? Don't keep us in suspense.

 

[JayneM]

I'm glad you posted this, as I've also experienced something similar twice - once after taking Mutaflor and the other after taking Pregnenolone. These things gave me 2 fairly good weeks where the brain fog lifted, gut felt a bit better and i didn't feel like I was dragging my body around so much - not so intensely weak. No idea why it happened but it was amazing while it lasted.

My specialist said at the time that he thought it was a sign that I was heading towards recovery or that my body was trying to get a handle on this illness...I knew it would be intermittent though because even though I was feeling much better, I didn't feel like that switch had turned off.

Here's hoping you have a few more of those experiences because they are a sweet relief even if only for a short time.

 

[Cyndia]

I have also had the same experience on the few occasions that I have had short remissions: the first thing that I notice is that drive and motivation come back in a strong way, and I find I can plan and organize with sharp clarity. It is a lovely feeling when this happens.

This makes me wonder whether it is just the brain fog that is the main hampering factor in ME/CFS, and this brain fog then causes a motivational fog as well; or whether the actual motivational circuitry of the brain is dysfunctional as well in ME/CFS.

The striatum, which is located in the basal ganglia, is a center of motivational and decision-making in the brain, and according to Cort's article, the striatum appears to be strongly associated with the fatigue in ME/CFS. So possibly some dysfunction of the striatum could be hampering the motivational and decision-making processes in ME/CFS.

I've had 4 or 5 partial remission days over the 2 years I've been sick, that were definitely PENE/brain fog improved, clear, functional days. Mine also only lasted 7-8 hours. They were random, out of the blue and despite logging the particulars of my life away about supplements, diet, hydration, heart rate and pacing, I can't see any correlations in anything I did to enable it to happen, nor have I been able to replicate it.

I do think neuro inflammation or the idea of that immune inhibiting switch tells our neurosystem to quiet way down is the key mechanism behind this illness.

Hope this research can nail it.

I started Valtrex 2 months ago and just climbed up to 1000 mg/day. I'll be so psyched if the viral suppression helps my immune system flip this switch. I'm hearing that happens for some folks?