Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

[Eastman]

Could it be that in the short term the mTOR pathway is activated by pathogens but in the long term, the oxidative stress from chronic immune activation inhibits mTOR? High levels of oxidative stress are very common in cfs.

Joseph Cohen put it this way:

You see, mTOR increases energy production, but also creates more junk products.

Autophagy is the process that degrades these junk products. But it is only usually active when mTOR is decreased. In other words, the body doesn’t start cleaning up until the party is over.

 

[lansbergen]

You see, mTOR increases energy production, but also creates more junk products.

Autophagy is the process that degrades these junk products. But it is only usually active when mTOR is decreased. In other words, the body doesn’t start cleaning up until the party is over.

With the infection I suspect autofagy is beneficial but to much autofagy worsens it.

 

[Lolinda]

I'd be very careful with probiotics. Some of the popular things I tried seemed to raise Tregs/IL-10 which is great for people with "normal" diseases but a nightmare for me

I have high-normal Tregs and react horribly to probiotics... So I am more than curious: what symptoms do you get? In me: From a single small dose of whatever probiotics or live sauercraut I get chills or some flue-like issues that can last for days or even weeks. I did some tests but never found out what it is. No mast cell degranulation (tryptase normal) and no CRP or ESR elevation.

 

[Sidereal]

I have high-normal Tregs and react horribly to probiotics... So I am more than curious: what symptoms do you get? In me: From a single small dose of whatever probiotics or live sauercraut I get chills or some flue-like issues that can last for days or even weeks. I did some tests but never found out what it is. No mast cell degranulation (tryptase normal) and no CRP or ESR elevation.

Flu-like reactions and mast cell degranulation issues. Also a decrease in gastric motility, full blown gastroparesis at times.

 

[Lolinda]

Flu-like reactions and mast cell degranulation issues. Also a decrease in gastric motility, full blown gastroparesis at times.

thanks. Similar here, except for mastcell-degranulation (though, symptoms would fit that too, but tryptase normal). But I am really curious how you relate your symptoms to Tregs and IL-10: Have you tested probiotics to raise these? What could be the mechanism? Thanks!!

I'd be very careful with probiotics. Some of the popular things I tried seemed to raise Tregs/IL-10 which is great for people with "normal" diseases but a nightmare for me.

 

[Sidereal]

thanks. Similar here, except for mastcell-degranulation (though, symptoms would fit that too, but tryptase normal). But I am really curious how you relate your symptoms to Tregs and IL-10: Have you tested probiotics to raise these? What could be the mechanism? Thanks!!

There is a literature out there on Clostridium butyricum (for instance) that it pushes IL-10. This supplement was great for me initially but triggered really serious problems long-term. I don't want to go too far off-topic on this thread.

 

[JaimeS]

Maybe we should split the thread. I've also had very similar reactions to probiotics. tried half a dozen before finally finding Dr Ohirra's, which seems to help GI symptoms without inducing immune symptoms. Not sure why... it's not a matter of the symptom improving. If I try the other ones again, same result.

 

[eljefe19]

I found a number of Probiotics that boost IL-12, TNF-a and lessen IL-10. Just gotta look in the research and you'll find them.

 

[antherder]

thanks. Similar here, except for mastcell-degranulation (though, symptoms would fit that too, but tryptase normal).

From what I've read, tryptase is often normal in MCAS, but elevated in mastocytosis, so you could still have mast cell issues. (Someone please correct me if this wrong.)

 

[enduin]

Have you guys who reacted poorly to probiotics ever tried Mutaflor? When I was at my worst with IBS and was reacting badly to probiotics (including Colostridium Butyricum), Mutaflor was the one I tolerated well and it greatly improved my IBS.

 

[Solstice]

Have you guys who reacted poorly to probiotics ever tried Mutaflor? When I was at my worst with IBS and was reacting badly to probiotics (including Colostridium Butyricum), Mutaflor was the one I tolerated well and it greatly improved my IBS.

Mutaflor was decent for me for a while, then became hell. Tired but wired all night, without sleeping. Vivomixx seems to be allright for me now.

 

[enduin]

Sorry to hear that. Are you sure it was the Mutaflor? The tired-but-wired thing is something I've been occasionally getting for a while, way before I started Mutaflor and it's a pretty common CFS symptom. Mutaflor does stuff that the other lactobacilli and bifido probiotics don't do, so it's a shame you can't take it, but if you don't tolerate it, well there's no way around it...

 

[Solstice]

Sorry to hear that. Are you sure it was the Mutaflor? The tired-but-wired thing is something I've been occasionally getting for a while, way before I started Mutaflor and it's a pretty common CFS symptom. Mutaflor does stuff that the other lactobacilli and bifido probiotics don't do, so it's a shame you can't take it, but if you don't tolerate it, well there's no way around it...

100% sure yeah. The symptoms died down quickly after I stopped taking it. My bifido went up from 0,01% to 8,51% without me taking any probiotica btw, just antibiotics at that time. Now i'm in vivomixx, which is good for now if i not overdo it. 1 satchel a day.

 

[MeSci]

100% sure yeah. The symptoms died down quickly after I stopped taking it. My bifido went up from 0,01% to 8,51% without me taking any probiotica btw, just antibiotics at that time. Now i'm in vivomixx, which is good for now if i not overdo it. 1 satchel a day.

Does anyone else think that most things are best avoided in excess/long-term due to the risk of overdoing them? I seemed to have such a good result from my mix for a year or so (can't be sure for how long at present as having a lot of trouble sussing things out), then it all went horribly wrong.

 

[AdamS]

We theorize that the immune drugs on trial (Rituximab and Cyclophosphamide) affect the faulty signal from the immune system in such a way that the inhibition of the PDH enzyme is reduced. Thus the normal breakdown of glucose can be restored and the production of the body’s «energy currency», ATP, may adapt better to the patient’s activity level.

Are there any other ways to reduce PDH enzyme inhibition? Would PDK1-PDK4 and SIRT4 inhibitors of some description work (by unblocking/reducing PDH dysregulation to an extent)? Apologies i'm not the most technical but it just sprung to mind

 

[mango]

Article in a Norwegian journal (21 March)

Tidskriftet Den Norske Legeforening: Hemmet enzymaktivitet ved kronisk utmattelsessyndrom?
http://tidsskriftet.no/2017/03/fra-...enzymaktivitet-ved-kronisk-utmattelsessyndrom

Google translate, English:
https://translate.google.se/transla...tet-ved-kronisk-utmattelsessyndrom&edit-text=

 

[kangaSue]

No mast cell degranulation (tryptase normal) and no CRP or ESR elevation.

@Lolinda Tryptase levels are often only elevated with Mastocytosis. I was looking to fit MCAS into my own situation of GI dysfunction only to realize recently that the GI tract produces a lot of your mast cells and with any sort of dysmotility or inflammation, the gut is a source of mast cell activation
https://www.ncbi.nlm.nih.gov/pubmed/21497195

 

[Lolinda]

Hey guys, thank you so much for all your replies!

Flu-like reactions and mast cell degranulation issues. Also a decrease in gastric motility, full blown gastroparesis at times.

From what I've read, tryptase is often normal in MCAS, but elevated in mastocytosis, so you could still have mast cell issues. (Someone please correct me if this wrong.)

Reading your suggestions about MCAS, I went through the symptom list. Damn, this is the mysterious disease that resolved in me!! (almost). So I reply to you with
1. symptoms
2. what I did to get rid of them
3. what still gets worse

1. symptoms I had (based on wikipedia MCAS):

• Dermatological
  • pale complexion
  • itchiness

• Cardiovascular
  • none of the listed ones... (but I still have POTS - could it be related to MCAS?)

• Gastrointestinal
  • diarrhea, cramping, intestinal discomfort
  • Swallowing, throat tightness

• Psychological & Neurological
  • brain fog, short term memory dysfunction, difficulty with recalling words (still an issue, but improved)
  • headaches

• Respiratory
  • congestion, coughing, wheezing

• Vision/Eyes
  • ocular discomfort, conjunctivitis

• Constitutional
  • general fatigue and malaise
  • food, drug, and chemical intolerances (especially fragrances)
  • sense of being cold all the time (this one I still have, though, better)

• Musculoskeletal
  • osteoporosis and osteopenia (still there)

Chemical intolerance was so so bad in me that a single scented candle in the other end of the room, not burning (!) was enough to 'kill me'.

@Lolinda Tryptase levels are often only elevated with Mastocytosis. I was looking to fit MCAS into my own situation of GI dysfunction only to realize recently that the GI tract produces a lot of your mast cells and with any sort of dysmotility or inflammation, the gut is a source of mast cell activation
https://www.ncbi.nlm.nih.gov/pubmed/21497195

Very interesting!! @Sidereal and @antherder taught me the name of the illness, you @kangaSue taught me that poor motility is a cause. Thanks❣❣❣

2. Now what did I do to get rid of these symptoms?
- Very low carb diet. Going low carb was not enough. Going keto improved things, going very low carb beyond that, really zero starch (but lots of veggies) helped.
- Dozens of things to improve motility. I refused drugs. I did: meditation, belly fondling, voluntary belly muscle moving, running, deep relaxation, manual pyloric release, ileocaecal valve massage, improving posture, yoga stretching exercises, increasing introspective sensitivity, self-acupressure, increasing motility by breathing techniques, chewing bitter herbs raw ...

3. What still gets worse

In spite of resolution of nearly all MCAS symptoms, extreme flu-like issues after probiotics got worse and my methylhistamine too: 6.6 (< 6.5) µg/nmol creatinine in 2011, 7.5 in 2016.
My suspicion is that the MCAS pathology remained and worsens still....? There is this not-so-friendly sentence on wikipedia: "...many can experience a general worsening trend over time." How about you guys? Trends?

Mutaflor was decent for me for a while, then became hell. Tired but wired all night, without sleeping. Vivomixx seems to be allright for me now.

Same here.

Maybe we should split the thread.

@JaimeS and @Sidereal and anyone else worrying (very rightfully!) about driving this thread off-topic: I already asked for moderator's help to split this thread. It was refused saying that they are so overloaded that they cant even do the most essential things for PR. ... That's sad news... Anywise, I am more than impressed how they can handle workload as a mod, being sick themselves! Looking at ourselves here on the thread, however, there is no point in pointing to any single person or post in some search of culprits why a thread runs off-topic ... it would be just as ridiculous as pointing to a water molecule "why did you cause a wave??". It simply needs mod's help. Kill me for saying this if you want, but if help in splitting threads isn't available, I feel its better to run off-topic than to lose precious posts. Hey guys, you diagnosed me! You outperformed 6 immunologists I consulted, 2 of them professors!!

I've also had very similar reactions to probiotics. tried half a dozen before finally finding Dr Ohirra's, which seems to help GI symptoms without inducing immune symptoms. Not sure why... it's not a matter of the symptom improving. If I try the other ones again, same result

@JaimeS your comment made me recall that yes, there is a probio, Lactoferment, which I do tolerate. Maybe this is because Lactoferment contains only dead (lysed) bacilli?

 

[Eastman]

@Lolinda

@JaimeS and @Sidereal and anyone else worrying (very rightfully!) about driving this thread off-topic: I already asked for moderator's help to split this thread. It was refused saying that they are so overloaded that they cant even do the most essential things for PR. ... That's sad news...

You could perhaps start a new thread and quote/link to the relevant posts here to continue the discussion.

 

[kangaSue]

there is a probio, Lactoferment, which I do tolerate. Maybe this is because Lactoferment contains only dead (lysed) bacilli?

Check out lactobacillus rhamnosus cell lysate too (Del Immune is one brand)
http://forums.phoenixrising.me/index.php?threads/huge-improvement-in-two-hours.27221/