Atypical ME/CFS

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Hi folks,

I have done so many lab tests. I think I'm in a very small subgroup. My metabolism is highly disturbed, yes, (was better after Abilify). Low in private and citrulline for example. Carnitine is low etc. But my other results:

We've done a cytokine panel on TH1/2/17/Treg cytokines. The only ones elevated a IL-1beta and IL-8 (very high). All the others are low.

BDNF is low. VEGF, RANTES normal, MIP-1 only one that's elevated is MCP-1.

TGF-beta normal. TNF-Alpha low.

I got strong signs of chronic inflammation (say IMD Berlin and Lab4More), but my MRI looked normal.

My ATP has always been normal.

Thyroid hormones normal, normal cortisol. Oxidative stress yes, but who doesn't nowadays.

Very low B-cells (almost gone) and low NK-Cells (could be because I'm in bed for over three years). hymus activity low. Relative T-ceLls slightly elevated

Makrophages Migration Inhibition Factor very (!) high.

Procalcitonine a bit higher (lab comment: viral infection or inflammation) MRP 8/14 high

I'm negative be for the Scheibenbogen AAB.

Hard to find infections (HSV1/2 IgM two times positive but PCR saliva and blood negative). HVV6-B PCR in saliva waek positive but IgM negative.

And so on. Looking at the studies makes me sad.

Ability helped until tolerance occurred. Ativan helps. Apart from that we tried many things, nothing helped. Copaxone, Mestinon, 10000000 supplement protocols.....

Can't remember a viral onset.

Was often in hospital but my condition is “not explainable”. I meet the CCC, got POTS and heavy PEM from almost everything.

I'm desperate

Martin
 
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WantedAlive

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Makrophages Migration Inhibition Factor very (!) high.
@Martin aka paused||M.E. Thanks for posting this. I've always suspected MIF in ME/CFS, this is the first time I've ever seen it mentioned. It's known to upregulate a proinflammatory state, so seeing it high is bad. It's increased in sepsis, MS and cancer to name a few. Being able to suppress this might be a good target, but what's available yet I don't know, I recall there were some compounds being studied for this purpose. I'll explore this now and see if there's anything worth trying.
 
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@Martin aka paused||M.E. Thanks for posting this. I've always suspected MIF in ME/CFS, this is the first time I've ever seen it mentioned. It's known to upregulate a proinflammatory state, so seeing it high is bad. It's increased in sepsis, MS and cancer to name a few. Being able to suppress this might be a good target, but what's available yet I don't know, I recall there were some compounds being studied for this purpose. I'll explore this now and see if there's anything worth trying.
My doc had the idea to measure it in liquor again to see if it comes from the brain
 

WantedAlive

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@Martin aka paused||M.E. Your Macrophage Migration Inhibitory Factor (MIF) being really high - as stated earlier I’m really surprised this cytokine hasn’t been brought up before in prior ME studies. I’ve always wondered if it was involved since it's a promoter of inflammation, and a suppressor of glucocorticoid inhibition of inflammation. It could also set you up for an exaggerated immune response which would be consistent with ME’s metabolic match with SIRS/sepsis.

I went exploring...and find there’s two known MIF: MIF and MIF-2. They’re usually increased together. Whether your test differentiates between the two would be really interesting to know. MIF-2 is also known as D-DT or D-dopachrome tautomerase, an enzyme that converts D-dopachrome into 5,6-dihydroxyindole which has antiviral, antiparasitic and cytotoxic effects. D-dopachrome is produced by oxidation of dopamine, a pathway I referred to in the Stanford Abilify thread. It’d be helpful to know if dopamine oxidation is part of the ME pathology.

According to research, MIF appears to be more proinflammatory promoter and its inhibition is beneficial in inflammatory disorders. For example inhibition of the MIF family (MIF and MIF-2) is thought to slow progression of severe multiple sclerosis. However, in some circumstances like parkinsonism, it may also be helpful in protecting against neuronal loss and damage. Latest key research papers here of MIF in disease and inhibitors:
https://www.mdpi.com/1422-0067/21/8/3023/htm
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6311451/

Inhibitors are still in R&D so there aren’t many known options, but here are the ones I can find which may be worth considering, but sadly there's really not much on offer:
Ibudilast (PDE4 inhibitor. Note Viagra a PDE5 inhibitor has helped some)
Iguratimod (used for RA, but only approved China and Japan)
Naturals: Ellagic acid, epicatechin, thyroxine, epoxyazadiradione (from Neem)


Strangely, I think a lot of us have the odd 'atypical ME/CFS' symptom or two. I'm wheelchair-bound, and my stamina varies throughout the day, but the slightest exertion like walking 5 metres will induce onset of profound weakness within about 1-2 hours, almost like a responsive loss of neurotransmitter that disempowers me. It's not the usual PEM symptom to my knowledge, and lasts 2 days on average. I simply have to avoid any exertion, so progressively more and more dependent.

Abilify helped at around 0.25-0.5mg daily, but continuous use became detrimental as well as getting a side effect of muscle pain/cramping in my forearm and hand (nowhere else). I had to discontinue. I've decided to resort to higher dose CBD oil for now (currently 50-60mg/day) which is probably helping as much as the Abilify did for me, but in a different way.

Hope you find something...
 

Alvin2

The good news is patients don't die the bad news..
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I have done so many lab tests. I think I'm in a very small subgroup. My metabolism is highly disturbed, yes, (was better after Abilify). Low in private and citrulline for example. Carnitine is low etc. But my other results:

We've done a cytokine panel on TH1/2/17/Treg cytokines. The only ones elevated a IL-1beta and IL-8 (very high). All the others are low.

BDNF is low. VEGF, RANTES normal, MIP-1 only one that's elevated is MCP-1.

TGF-beta normal. TNF-Alpha low.
How did you test all these things?
 

max_yazhbin

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can anyone provide a link to where I or my doctor can order a metabolon test? Ideally with a price attached.
 
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I'm really desperate... Especially after the last post by @sometexan84 https://me-pedia.org/wiki/Cytokine

It really seems that there is some consistency of the immunological profile especially when it comes to Interferons and interleukins. My blood does not show these abnormalities except IL-1b and IL-8.

The rest like TNFa, INFg and TGFb is exact the opposite to what is found in studies being consistent.

Might ME be an umbrella term for many totally different immunological subgroups? Or do I have sth completely different with PEM that is not known yet? Or, and that would be the worst, did my treatment with Abilify changed everything and now that it doesn't work anymore I don't fit into this profile.

Maraviroc is very interesting - for those with high RANTES... My is low.

I really don't know how to proceed and after the last crash two days ago I'm losing hope that I find sth.

Martin

Edit: in this context this is quite interesting
the researchers used immunoassay testing methods to determine the levels of 51 immune biomarkers in blood plasma samples collected through two multicenter studies that represented a total of 298 ME/CFS patients and 348 healthy controls. They found specific patterns in patients who had the disease three years or less that were not present in controls or in patients who had the disease for more than three years. Short duration patients had increased amounts of many different types of immune molecules called cytokines. The association was unusually strong with a cytokine called interferon gamma that has been linked to the fatigue that follows many viral infections, including Epstein-Barr virus (the cause of infectious mononucleosis). Cytokine levels were not explained by symptom severity.”
https://www.sciencedaily.com/releases/2015/02/150227144903.htm
 
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