Another disease with PEM?

[Martin aka paused||M.E.]

Dear community,

I ask for your help. I'm not so sure, from all I've heard, whether ME / CFS is really the only disease with PEM.

Briefly about my course: Onset 2013 (no infection remembered), very mild course form (could work, study, do sports etc.). The only thing that was present was the constant feeling of flu, which got worse with intense overexertion (drinking nights) and sometimes tied me to bed for an hour.

In 2015, mild psoriasis broke out after a streptococcal infection. The feeling of flu disappeared

At the end of 2015, the psoriasis disappeared.

Because of a chlamydial infection, I was given ciprofloxacin in January 2016 and got floxed. Symptoms are similar to ME, except that you don't have PEM. They disappeared again by the summer of 2016. Then some of them came back in July (especially muscle pain and tingling in arms and legs).

In August 2017, after a week in Croatia, I suddenly became moderate. I had diarrhea on the day of my departure and that lasted for a week. At the airport for the return flight I had to lie down because I could no longer stand. From then on I had severe PEM.

In February 2018, I overdid so heavily that I've been bedridden ever since.

My symptoms are: PEM, tinnitus, sensitivity to sensory stimuli, sometimes breathing problems, sometimes blurred vision, extreme weakness, POTS, high heart rate even when lying down, IBS, sleep disturbances, sometimes (only when I crash) sore throat... everything gets worse when I crash. I don’t have pain.

Infections: Coxsackie B4 and weak HHV6B (400 copies), contradictory results of Lyme (Antibiotics didn't help).

It all sounds a lot like ME / CFS. However, I deviate from the research situation.

This study investigates cytokines and chemokines in ME/CFS
https://www.medrxiv.org/content/10.1101/2020.08.17.20164715v1.full.pdf
(screenshot attached)
The only accordance is that I have elevated IL-1b and IL-8 and MCP-1. The rest is low.

I did a metabolon test in 2019 and it shows a highly disturbed metabolism.

I also have oxidative stress.

No leaky gut.

Normal intrcellular ATP

My NK cells are also low as shown in some studies.

TGFbeta normal, TNFa normal…

Almost no B-cells, mild relative T-lymphocytosis, Thymus activity low...

Abilify and benzos help a lot!!!

But regarding cytokines and chemokines I question myself: Do I have something different, that also had PEM? Because here are many stories of people who lived for year's with the diagnosis ME/CFS and then finally found out they have something completely different.

What do you think? Any input is very much welcomed!

Martin

 

[barabara]

I think viruses damage things such as mitochondria, then mitochondria malfunction and produce products like lactate, which damage cells and cause an immune response, which can manifest as antibodies to the original virus in question.

Studies show low blood flow in used muscles in ME/CFS, which is likely to be from low carbon dioxide production. It doesn't seem to have anything to do with PEM.

My CFS seems to be the primarily neurological variant, ME. When I have PEM, I can become paralyzed and there's autonomic disturbances. When I had someone inject naloxone into my nose during PEM, my paralysis and brain fog cleared up quickly. The endorphin, endogenous opiate system, is another immune, inflammatory response that responds to damage. Chronic brain fog is also found following concussions, the severity depending on the extent of injury.

 

[xebex]

it seems there are other diseases with exercise intolerance for sure, and I think the two are separate, before I got full-blown ME with full-blown PEM i had exercise intolerance but no PEM - ie I was an athlete and then very suddenly I became intolerant to exercise, no matter how hard I trained, or how carefully I trained i could not increase my strength anymore and I was constantly breathless and overheating and achy, but I never crashed and I would wake up the next day feeling "fine" again.

I think there may also be some kind of PEM in other illnesses BUT I think with ME it's the recovery that is so slow that makes the PEM build up and up and up, that may be the defining factor, in my opinion anyway.

 

[Pyrrhus]

Post-concussion syndrome:
https://forums.phoenixrising.me/threads/post-concussion-syndrome-may-come-with-pem.83473/

 

[Martin aka paused||M.E.]

Post-concussion syndrome:
https://forums.phoenixrising.me/threads/post-concussion-syndrome-may-come-with-pem.83473/

I never had a brain injury

 

[Judee]

It all sounds a lot like ME / CFS. However, I deviate from the research situation.

This study investigates cytokines and chemokines in ME/CFS
https://www.medrxiv.org/content/10.1101/2020.08.17.20164715v1.full.pdf
(screenshot attached)
The only accordance is that I have elevated IL-1b and IL-8 and MCP-1. The rest is low.

Almost no B-cells, mild relative T-lymphocytosis, Thymus activity low...

I have also been starting to wonder if we're two subsets of ME (I know there are actually many) but the main two being where we fall on immunity.

Are some of us at a stage of being hyper-immune (to the point of having autoimmune issues) where maybe some of us are in some ways the more the opposite (hypo-immune)?

I have IgM deficiency (hypo) but then again I also may have developed possible hashimoto's (hyper) so I don't know.

It's just this idea keeps floating in my brain. Could that also be why some things work for some of us and then make others of us worse???

 

[xebex]

@Judee i totally believe that there are two main subgroups - hyper and hypo immune as you put it, and then other subgroups within that.

 

[Mary]

it seems there are other diseases with exercise intolerance for sure, and I think the two are separate, before I got full-blown ME with full-blown PEM i had exercise intolerance but no PEM - ie I was an athlete and then very suddenly I became intolerant to exercise, no matter how hard I trained, or how carefully I trained i could not increase my strength anymore and I was constantly breathless and overheating and achy, but I never crashed and I would wake up the next day feeling "fine" again.

I think there may also be some kind of PEM in other illnesses BUT I think with ME it's the recovery that is so slow that makes the PEM build up and up and up, that may be the defining factor, in my opinion anyway.

I wonder if you had "over-training syndrome" initially? Though from what I read, the athletes don't generally wake up feeling fine the next day. But the treatment is, rest! Overtraining Syndrome: Warning Signs and How to Cut Back (verywellfit.com) It can take weeks or even months to recover. I worry about one of my sons - he has a desk job but works very hard (IT management) and then hits the gym very hard, doing cross-training, several nights a week. I've mentioned my concerns to him, but, you know, I'm just his mom! I'm going to be seeing him in a few weeks and plan to take my HRV monitor so he can try it and maybe that will help make him more conscious of what he's doing.

I think one thing which distinguishes ME/CFS from other conditions is that PEM can be triggered by something as minimal as taking a shower (or even less). Once I watched a lecture on DVD (3 hours) and was crashed the next day. So I think the triggers and the recovery time are all out of proportion with PEM.

 

[xebex]

I wonder if you had "over-training syndrome" initially? Though from what I read, the athletes don't generally wake up feeling fine the next day. But the treatment is, rest! Overtraining Syndrome: Warning Signs and How to Cut Back (verywellfit.com) It can take weeks or even months to recover. I worry about one of my sons - he has a desk job but works very hard (IT management) and then hits the gym very hard, doing cross-training, several nights a week. I've mentioned my concerns to him, but, you know, I'm just his mom! I'm going to be seeing him in a few weeks and plan to take my HRV monitor so he can try it and maybe that will help make him more conscious of what he's doing.

I think one thing which distinguishes ME/CFS from other conditions is that PEM can be triggered by something as minimal as taking a shower (or even less). Once I watched a lecture on DVD (3 hours) and was crashed the next day. So I think the triggers and the recovery time are all out of proportion with PEM.

I have often thought I may have had overtraining syndrome at the start, but I was training in a team and wasn't actually training as hard as the rest of my team, and they didn't get sick, there were also a lot of other factors involved.

The sudden exercise intolerance was brought on by a vaccine. To be fair I didn't feel "Fine" at the start. I could hardly walk because my calf muscles were in constant lactic acid spasm, and had to get my boss to drive me to work because I could no longer cycle and my brain would stop working every day at 3 pm, but I was able to go on like this for 9 months before quitting my job and moving to Canada where I was able to mostly heal and, the severity of that faded. I lived a "normal" life with significantly reduced exercise tolerance for 6 years before getting "full-on" ME after a house reno.

I also had 4 years of stress prior to the vaccine. and a minor head injury. I have tested positive for EBV and CMV i actually managed to get the test in a crash and had active CMV in the crash. The most interesting thing is though that my severe migraines disappeared once I had that vaccine but was left with chronic low-grade migraine (which thankfully now has gone) and I never had a chest infection again of which I had every winter my entire life without fail.

I subscribe to the "mountain of stressors switching a switch theory" and causing my immune and nervous system to become hyper-active.

I don't agree that the trigger and the response of PEM are always grossly out of proportion in ME. I believe that you can have very mild ME which doesn't impact your life, you just think you're weird for a long time till it finally hits. What did I have before I had ME which led me to "official" ME? I have certainly been in the group of needing an entire week to recover from a 10minutes conversation or being floored by a shower, but I've also been able to live a fairly normal life, with some limits. Right now I'm somewhere in the middle. But all this time I know that I have had ME.

On another note HRV monitoring is very important for athletes training and no one, even healthy people, should poo poo it.

 

[Mary]

I subscribe to the "mountain of stressors switching a switch theory" and causing my immune and nervous system to become hyper-active.

I think this is true for many of us - it certainly was for me. I had a long slow downhill slide for 13 years before I started crashing (PEM). And I've been crashing ever since. I've often wondered if I had taken my symptoms and health more seriously when I started to decline, if I could have avoided what I consider to be "full-blown" ME/CFS, PEM. I think it all started in childhood with long-term severe stress, which I think did a number on my adrenals and immune system.

On another note HRV monitoring is very important for athletes training and no one, even healthy people, should poo poo it.

My son is a techie, so I'm hoping he'll want to get an HRV monitor when he sees mine!

 

[xebex]

I've often wondered if I had taken my symptoms and health more seriously when I started to decline, if I could have avoided what I consider to be "full-blown" ME/CFS, PEM.

I think it’s a possibility but if we are able to keep pushing it’s very hard not to. Also I blame the doctors and their ignorance - I went to them for years before becoming “official” and of course was given the “there’s nothing wrong with you” bs. If they were more knowledgeable they might be able to recognize signs and put measures in place to avoid the permanent crash. We are currently doing this for my 7yo daughter who is showing signs. Luckily we have a very understanding school so I’m hoping we can knock it in the head before it sets in so to speak.

 

[Lisa108]

• Since PEM is a term specifically used in ME/CFS, I'd rather look for diseases associated with "exertion intolerance" (like @xebex mentioned) or "fatigue+pain". You'll find metabolic disorders like glycogenosis, mitochondriopathies, myopathies,...

See for example, Genetic test for Mendelian fatigue and muscle weakness syndromes

• Another hint (for a completely different search) is you mentioning chlamydia AND hhv-6. Both have their own ways of evading our immune systems, but they also have been found to interact. Dr. Bhupesh Prusty has worked on that.

Imbalanced Oxidative Stress Causes Chlamydial Persistence during Non-Productive Human Herpes VirusCo-Infection

Chlamydia trachomatis Infection Induces Replication of Latent HHV-6

• Re: Psoriasis - Human Herpes Viruses 6, 7 and 8 also have skin manifestations.

Human Herpesviruses 6, 7, and 8 From a Dermatologic Perspective

 

[Flnn]

No leaky gut.

How do you know that? Did you test for it?

 

[Martin aka paused||M.E.]

How do you know that? Did you test for it?

Yes

 

[Flnn]

Yes

Can you please share what test you've done?

 

[Martin aka paused||M.E.]

Zonulin + I-FABP

 

[Flnn]

Zonulin + I-FABP

Interesting! I've been told by a practitioner that Zonulin is not reliable for testing intestinal permeability.

And here is a paper on I-FABP - https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/s12986-016-0089-7 - The role of I-FABP as a biomarker of intestinal barrier dysfunction driven by gut microbiota changes in obesity

Conclusions
HF diet-induced obesity is characterized by dysbiosis, insulin resistance and systemic inflammation. In this context, plasmatic I-FABP should not be used as a marker of the intestinal barrier dysfunction and the low-grade chronic inflammatory status.

 

[pamojja]

One would think HF obesity is the least of problems for someone on feeding tubes?

 

[JES]

I think there isn't strong consensus on what cytokine is low and what high in the cytokine studies that have been performed on ME/CFS patients. I reckon we are still guessing a bit, just like with autoantibodies.

The feeling of flu disappearing during psoriasis I can relate to. My ME/CFS symptoms go away 50% of time when I get an acute infection. I also had a bad flare of POTS symptoms, after which my brain fog / sickness feeling magically cleared away, only to return back a few days later. I think this is relatively common.

Ron Davis has observed the same in his severe patients. Their lab results looked better following a fever, but it was probably the acute infection, not the fever that helped. I think it all points towards a dysfunctioning immune response. When the immune system temporarily gets busy with fighting a cold (or attacking my nervous system), the flu-like symptoms reduce.

 

[Martin aka paused||M.E.]

Interesting! I've been told by a practitioner that Zonulin is not reliable for testing intestinal permeability.

And here is a paper on I-FABP - https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/s12986-016-0089-7 - The role of I-FABP as a biomarker of intestinal barrier dysfunction driven by gut microbiota changes in obesity

Conclusions
HF diet-induced obesity is characterized by dysbiosis, insulin resistance and systemic inflammation. In this context, plasmatic I-FABP should not be used as a marker of the intestinal barrier dysfunction and the low-grade chronic inflammatory status.

So? How to test it?