A New Hypothesis for Viral ME Symptoms

[Wishful]

I am glad you were and hopefully still are having a better day!

Yup, today's hike was even brisker and there was pretty much no neuropathic pain. Whatever it was seems to have passed. I'm hoping that the reaction to high-protein meals has passed too, but that still needs testing. My temperature was back to normal too.

I certainly don't know how much of our immune responses are collective and how much is from some actual neural processing. I think our understanding is at a stage where discussion and even vigorous arguments is healthy. It's unhealthy to simply accept one theory without question.

One problem about the brain/immune response is that many of the pieces have multiple roles in the body. For example, cortisol inhibits parts of the immune system, but it is also used for several other functions. If you're being chased by wolves, your brain will boost cortisol to boost your chances of survival. However, it's also telling your immune system to shut down (to save resources for running?). If the wolves hadn't been there, your brain might have sensed a viral infection and reduced cortisol production. So, there isn't really a 'general' in charge of the immune system command network; cortisol is controlled by a gland with multiple inputs. Mutations where these conflicting demands reduced survival died out, so we've got these fairly simple independent systems with possibly inconvenient interconnections working collectively in ways that overall increases our survival.

So, if I'm imagining my body fighting a viral infection, I don't see a genius commander deciding troop deployments and movements of supplies and so forth, with all messages coming from HQ. I see a bunch of cells with simple responses acting collectively in ways that evolution has weeded down to something that works, with various glitches and unfortunate miscommunications, friendly fire and careless destruction of the landscape.

 

[Mohawk1995]

Good to hear on the day being good! My son did not tolerate high-protein (low carb) meals well. I think that lack of carbs just depleted his energy cycle that much more.

I honestly think we agree more than we disagree. For instance, I totally agree with the lab science and the empirical science that support resource re-allocation controlled by the nervous system as in the wolf example you provided. Probably contributes to cognitive issues when resources are reallocated to protection mode when someone is sick (along with neuro-inflammatory agents and the like). From what I've studied and what I have seen in the clinic, I have trouble stating any process or system in the body can be fairly simple or independent.

It may just come down to a philosophical difference. One in which I see a highly complex, fully integrated and systemically aligned organism (human) which defies explanation in many ways and also creates challenges applying the principles of common thought, science and evolution itself. Not one in which all the messages are coming from a central node or HQ, but one that has interdependent and integrated interactions with every system in the body. One that learns and adapts in ways that far outstretch our highest understanding of complexity. In other words, although I can explain some of what I see through science and math I cannot fully explain it. Nor do I believe I am alone. If we could explain it, we would be much farther down the road toward a cure for ME/CFS.

 

[Wishful]

My son did not tolerate high-protein (low carb) meals well.

Yesterday's test of peanut butter showed that I'm still sensitive to proteins; I felt much worse an hour or two later. Also, my temperature did go up again (.4C this time), but dropped again a bit later. Today my temperature has gone up again midday, but without the worsening of other symptoms, and the temp has dropped again. I still think it's related to kynurenines, so I'll have to try a TRP tablet (or piece of one). Maybe my t-cells are still rooting out the last few viruses, so IDO is still a bit high..

In a previous message, you mentioned the vast number of brain cells and interconnections as something too complex to understand. I don't feel that way. There may be lots of cells, but they aren't all in active use, so that cuts the complexity down a bit. Beyond that, it's still just a physical system; the complexity doesn't mean that it has to become something beyond that. Someday our home computers may exceed the complexity of the human brain by many orders of magnitude and still be just a physical system.

I also see human bodies and brains as cobbled together from bits and pieces and in ways that would be considered poor choices from an engineering design perspective. It does work, because all the failed versions died out, but it is hardly elegant. In short, it's an amazing mess.

 

[Rufous McKinney]

Yesterday's test of peanut butter showed that I'm still sensitive to proteins; I felt much worse an hour or two later. Also, my temperature did go up again (.4C this time), but dropped again a bit later.

You got me wondering about temperatures and wishing I had super accurate thermometer.

yesterday afternoon (proteiny breakfast 5 hours prior) my temperature was low..below normal. 97.6

One hour after eggs: it was 98.8

2 hours later: its lower- 98.2

Wondering..what ...or if thats significant...

 

[Wishful]

Wondering..what ...or if thats significant...

My oral temperature does vary after a hot or cold meal, and that change seems to last quite a while. Likewise, spending time out in the cold or doing something physically active can change oral temperature for a while. What I noticed about my 'few tenths variations' is that they were very consistent. I could fairly reliably guess from my symptom severity what my temperature would be, although there were many times when I guessed wrong.

When I had my type IV food sensitivity, temperature correlated very strongly with severity. I could sit at my desk, avoiding external temperature changes, and 48 hrs after I'd eaten a meal, my symptoms would abruptly flare up and my temperature would rise with them and then drop with them a bit later. That strong correlation is why I still measure my temperature frequently. It's the most convenient reasonably reliable quantitative measurement I can take for my ME symptoms. I'd love to be able to monitor my cerebral levels of IFN-g, IDO, and kynurenines, but that's not a $10 gadget yet.

I bought the cheapest digital thermometer, since I didn't expect the somewhat more expensive ones to be much better. Ones made for lab use should hold to higher standards, but I think that the cheap ones are good enough for my purposes. BTW, I've been using my $10 thermometer for several years now, and the tiny non-replaceable battery hasn't run out yet.

 

[Rufous McKinney]

It's the most convenient reasonably reliable quantitative measurement

One of our hugest issues is: can we track something quantitative? To get the darn bias out the equation. Ranking things from 1-10 (are you having a 9 day or a 7 day)...its just too iffy and subjective.

so I might try to see if there are subtle trends in temperature....

 

[Judee]

Where you live in a wooded area, I wonder if you should consider Lyme or Lyme co-infections as a possibility as well. A large number of people with Lyme never remember being bitten so you cannot always go by that. I've joined a facebook Lyme group and many of the symptoms we have mirror what they are reporting.

If you try Polygonum cupidatum (Resveratrol) and Cat's Claw and feel better, that could give you a clue possibly.

It's very rough going but I have been treating my ME/CFS as caused by Lyme's disease and am finally seeing tiny bits of hope. Something feels different this time though it is slow going to be sure. (I'm still on oxymatrine though too for possible viral co-infections because I noticed it helped a tiny bit as well though not as much as this treatment is.)

 

[jstefl]

I have had this illness for 30 years now and have suffered many of the side effects. I have, however, not gotten many colds or flu in that period. I used to get at least two colds a year, but don't remember the last time I was sick. My wife has been sick many times and I haven't caught anything from her, including what we believed to be the covid virus earlier this year before testing became common. It seems that my immune system is working harder than it ever has.

There is a lot of talk about our brains that seems to assume that we are all programmed the same and respond to attacks on the system the same way. One of the things I have been wondering about is pregnancy and the way the body responds to it. When a woman becomes pregnant the first time she is exposed to many new hormones that were never present in the body before. Once the pregnancy is complete, the body is supposed to return to normal and everything should be as it was. This is true for many, but in some cases, things don't go back to the way they were. Post partum depression is a fairly common symptom in women.

Why couldn't we be suffering from a similar problem? Post cold or flu illness? Computers from time to time will lock up and need to be rebooted and I am wondering if we have a similar need to reboot? All of the searching for a viral infection has come up empty so far, and I would think that we would have found a virus after all these years of looking. Our illness has at least some symptoms that are similar to what the mental health people want to treat. There have been many times that I have wondered if I was autistic or just crazy.

Maybe there is something tricking our brains that we haven't found yet, like Dr. Davis' large particle in the blood, but maybe we need to just hit control/alt /delete to fix things.

 

[Wishful]

Computers from time to time will lock up and need to be rebooted and I am wondering if we have a similar need to reboot?

I do think that ME might be similar. I was able to trigger temporary full remission maybe a dozen times, and it was like flipping a switch. If ME is due to a positive feedback loop, it's possible to break that loop and return things to normal. The problem seems to be that there is something else pushing us back into that abnormal state. There might be many things that will knock us out of that state--and lots of things that can initially push us into that state, but we still need to find that naughty little bit that biases us into that state.

 

[jstefl]

I have never had a remission to normal, but I have greatly improved from my low point and have remained there for eleven years.

I became ill at 43 years old after a cold. For a long time I thought that I had gone from healthy to unhealthy in a few days. After thinking about this a lot, I probably wasn't completely healthy for most if not all of my life. It isn't possible to know how other people are feeling, or how a person should feel. I went through life thinking that I was normal without anything to compare my health with. I didn't have any serious problems but has some small nagging issues.

Some of those issues I believe are due to enterovirus infections, of which I have several. I believe that I was infected by drinking well water on my grandfathers farm. My father and his brother both died prematurely from ME/CFS drinking that same water. The farm had a shallow well located close to the septic system and it was an area that many animals visited.

I definitely benefit from Dr. Chia's Equilibrant. It is possible that the enteroviruses are what is pushing me into that abnormal state.

 

[Wishful]

I went through life thinking that I was normal without anything to compare my health with.

That's really a serious problem that the medical community isn't working on. There are probably lots of people struggling with real diseases that aren't diagnosed because they aren't aware that they should be tested. It's even worse for diseases lacking clear markers or measurable symptoms. A quantitative test for pain or fatigue would be very useful.

 

[Pyrrhus]

One of the things I have been wondering about is pregnancy and the way the body responds to it. When a woman becomes pregnant the first time she is exposed to many new hormones that were never present in the body before. Once the pregnancy is complete, the body is supposed to return to normal and everything should be as it was.

Good point. In pregnancy, the woman's immune system is temporarily suppressed by hormones, in order to avoid the immune system attacking the fetus. After birth, the woman's immune system is supposed to return to normal...

 

[gbells]

Many of you know that my ME has been non-standard; I didn't suffer from the physical limitations, and I had some treatments work really well for me that no one else has reported benefits from. In the last few weeks I've been feeling much worse, and getting worse symptoms after eating high-protein meals. I've also returned to an old response of feeling abruptly worse 20 minutes after ingesting quickly-digestable carbs. To top that off, I've developed what seems like the typical physical problems many PWME complain about: using my muscles makes them hurt fairly quickly, though I'm not familiar enough with the 'acid burn' sensation to know if this is that. At one point I was wondering (maybe panicking a bit?) if I'd cured my PEM but switched to a more typical form of ME.

One additional symptom is that my temperature is typically about .3C higher than normal during the day. That suggests some sort of chronic immune system activation. So, it seems reasonable that this is some sort of infection, maybe a new virus, or reactivation of an existing one, or maybe one of those abortive viruses pumping out nasty proteins. What I think is happening is that my immune system is pumping out extra IFN-g, which is keeping IDO high in my brain, which is converting TRP into neurotoxic kynurenines. That seems a logical explanation for my observations.

My hypothesis is that the common muscular symptoms of ME result from this sort of chronic immune activation. I'm presently fairly brainfogged, so this is not a well-thought-out hypothesis. Maybe someone else can point out some supporting or refuting evidence or logic. Maybe it'll trigger some interesting discussion. I do wonder whether the results from patients who tried antivirals fits this hypothesis better than any 'viral infections cause ME' hypotheses.

If this new state hasn't gone away in a week or two, I'll buy some elderberry juice or other product to try, since that seems to be a strong immunostimulant for me. If that makes me feel worse, followed by feeling much better, that would support the hypothesis.

The temperature elevation is interesting. In my case I had a body temperature drop of 1 deg F which persisted for 12 years until doing several months of immunotherapy (it is now normal).

 

[Wishful]

Update: whatever was causing my increase in symptoms seems to have passed. It seemed to be a fairly abrupt improvement 5 days ago, with a more gradual improvement for a few days before that. Six days ago I could manage to finish my 45 minute walk. The next day I did the same walk with a brisker pace and kept going further because I felt like it. The next couple of days I did even longer walk, including significant hill-climbing, and still felt pretty good. Yesterday I ate some jerky, and didn't experience a worsening of symptoms, whereas a week earlier it would have left me aching and feeling horrible. Peanut butter tested okay too.

So, I think that this was a viral infection, and this experience fits the hypothesis that viral infections worsen existing ME symptoms, even if the infection itself doesn't cause noticeable symptoms. I've fairly sure that it was the tryptophan in the protein foods that was making my symptoms worse, as the extra IFN-g from an infection increased IDO and thus the nasty neurotoxic kynurenines.

A possible check for this hypothesis: see if the PWME who show active infections feel worse after eating TRP-rich foods (or slightly better when avoiding them). Feeling abruptly worse 20 minutes after eating quickly digested carbs would be another sign of TRP sensitivity.


I am soooo relieved that this wasn't a permanent shift into a new and worse phase of ME.

 

[Hopeful2021]

I got a pretty big crash several days ago- attributed to standing too long in front of the mirror, combing my rather long and tangled mess of wet hair and then decided to cut some off. I didn;t think I was there very long.

but I crashed pretty hard within 12 hours of that. And my arms were up- quite a bit of the time (I though of you, @Wishful ...). Normally I sit in my chair while trying to get the comb thru this mess. Arm rests, not standing yada yada. Take more time as well- I was rushing before my hair got too dry. And the big difference between this exercise of hair cutting and just doing too many dishes which (does not usually) cause a crash...was Arms Up.

was that temperature 0.3 degrees? (or 3.0 degrees?). I'd somewhat argue your unlikely to have such an accurate thermometer if its 0.3 degrees.

Back when I had mild ME, feeling like I had a low grade fever was a real common symptom when run down. Now its not as much for me. But I"m also not measuring it. What type of thermo do you use for measuring it?

@Rufous McKinney
I remember crashing when I would brush my hair. About moving the arms:

I recently started using the Biocharger. And I noticed that it helped my lymphatic system the very first session. I am continuing doing the recipes for the lymphatic system. And when I do so I am quite strong. So in this thread about muscles in the body, and in my own observations as I reverse the symptoms,
I think it's more in the facia versus the muscles
@Mohawk1995 @Wishful

I've used a neurostim device for the muscles and nervous system. Neuroplasticity training is my jam. And I focused on it for hours a day for more than one and a half years. And it's been really helpful. But enter now the Biocharger since about October and Where I have noticed the ramifications from this disease the most is inside the lymphatic system and the fascia.
I still use my other biohacking tools.
Those were *** extremely*** helpful. And once spring comes, I will incorporate using my Cryotherapy system at home again. Because I think that is also a tool that targets many things that other therapies can't. Even cold water immersion.

I've done Hyperbariac Oxygen to help my brain in my nervous system for many years. And I'm recently doing oxygen training which mimics high altitude. And that's helpful also. But the Biocharger is the thing that is targeting oxygen to help my brain in my nervous system for many years. And I'm recently doing oxygen training which mimics high altitude. And that's helpful also. But the Biocharger is the thing that is targeting my lymph and it's where my mind-body map gets the most ZESTY moments of being lit up in seeing old patterns of this disease disappear.

My focus in
Neuroplasticity training is about finding the old patterns and letting them disappear and then putting a new patterns. not just New patterns.

 

[Rufous McKinney]

I remember crashing when I would brush my hair. About moving the arms:

The body is storing- alot of crap. So the lymph and muscle is storing up- some of the whatever it is that makes us get sick. Maybe its LPS, maybe its metals, or toxins that should leave but instead accumulate.

I thought I would mention i developed bursistis- elbows...one swelled up with liquid but did not hurt much, and the other had no swelling but hurt alot. And this was all cycling with the daily inflammation.

I got rid of it: well I simply one night stretched my arms, and all the joints REALLY alot- over my head and just stretched and stretched and I did that for 3 days and the liquid that had accumulated all disappeared rapidly thereafter. The soreness gradually left over several months and it has not come back.

So I do this arm stretchy thing- some...to remind myself to keep that banished.

but yes- arms were up for a long time dealing with hair. Toxins drained out...into system...

 

[perrier]

My daughter is in horrific relapse and she says she has non stop Flu feeling. Is there anything one can do to take the edge off that?
She also describes feeling 'poisoned.' She says the symptoms are so unbearable and they are non stop that she is writhing in discomfort with tears welling up.

 

[Wishful]

My daughter is in horrific relapse

Any idea what might have triggered it? Knowing that would help in figuring out what might be best to try. Was there any change in diet? Any non-ME symptoms (loose bowels, constipation, injury, rash)?

When I was really desperate, my doctor prescribed some prednisone, and after five days of no effect, I suddenly had full remission. The remission faded when I tapered off, but just knowing that it was possible to be healthy again made a huge difference in tolerating ME.

 

[perrier]

Any idea what might have triggered it? Knowing that would help in figuring out what might be best to try. Was there any change in diet? Any non-ME symptoms (loose bowels, constipation, injury, rash)?

When I was really desperate, my doctor prescribed some prednisone, and after five days of no effect, I suddenly had full remission. The remission faded when I tapered off, but just knowing that it was possible to be healthy again made a huge difference in tolerating ME.

Thank you Wishful for your concern. There were two infections in July and August, and then things never got back to the regular-bad-normal. She tells me it's unsustainable and getting worse every day. She is bed bound. The primary symptom is flu feeling, and then the nightmare PEM, and burning all over. You know, it's as if the body cannot seem to sustain any kind of 'stressor.' She had trouble fighting off the first infection, and so more antibiotic was given and finally the second one (which I believe was just the first infection) retreated. But it's as though in this horrific illness no stressor is possible to withstand, whether it is physical, emotion, intellectual, or any other sort.

 

[Wishful]

Viral infections or bacterial? That could make a big difference in what might help. If it's bacterial, it might be that her microbiome hasn't recovered properly, so the right diet and probiotics might be worth trying. My ME started with a type IV food sensitivity, and that stayed with me for 2.5 years, despite having antibiotics several times (for tooth infections). Then I got a typical food poisoning from spoiled coconut milk, which flushed out my gut, and the next morning my type IV sensitivity was gone. I assume it was due to a microbe, and the flushing out gave my microbiome the proper chance to finally wipe out the bad microbe. Thus I'm a believer in the microbiome having an effect on ME, but also that taking some antibiotics, probiotics or even an FMT is no guarantee of improvement. It can be simple, but it can also be tricky, so it's a matter of luck.

If they were viral infections, there might be tests that can find residual infections, and antiviral treatments. I'm not conversant with that, but several other members are, and can probably recommend some tests and treatments and maybe doctors/clinics.

I did have the strong flu-like symptoms when my ME started, but those diminished quickly. It is certainly a horrible state to be stuck in, with no way of knowing how long it will last. If I'd known that spoiled coconut milk would get me out of that state, I'd ignore those "refrigerate after opening" warnings and make sure the toilet paper holder was full.