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The four ME/CFS tests almost no one has ever done

Horizon

Senior Member
Messages
239
I am going to be doing these tests. I think I definitely have a Mast Cell issue. I have an appointment with my dermatologist in a few weeks but I suspect they won't know this stuff and may need an immunologist for how to deal with this.

How likely are we to have anaphylaxis from this?
 

ryan31337

Senior Member
Messages
664
Location
South East, England
I've had repeat 5HIAA tests in normal range.

Waiting on Tryptase & random N-methylhistamine results currently, not expecting to see anything as not flaring at the time. My dermatologist (mast cell literate) isn't bothered either way and thinks its more pragmatic to start anti-histamine & anti-leukotriene meds to prove mast cell mediator relevance.

Costs for those tests aren't prohibitively expensive (£100ish sort of range each). PGD2 on the other hand apparently involves shipping, frozen, to the US and costs £700ish :(
 

halcyon

Senior Member
Messages
2,482
My dermatologist (mast cell literate) isn't bothered either way and thinks its more pragmatic to start anti-histamine & anti-leukotriene meds to prove mast cell mediator relevance.
That is actually part of the diagnostic criteria for MCAS.

2. A decrease in the frequency or severity; or resolution of symptoms with anti-mediator therapy: H1 and H2 histamine receptor antagonists, anti-leukotriene medications (cysLT receptor blockers or 5-LO inhibitor), or mast cell stabilizers (cromolyn sodium)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Be careful with interpreting PGD2. Its probably not a reliable test. It has a very short half life of about 30 minutes. I have yet to read a paper that shows stable metabolites that can be measured, and last I checked there were multiple sources of those metabolites.

The other problem is PGD2 probably has highly variable levels. You could wind up measuring it on a high or a low. To be more certain you would have to be at the testing lab, undergo a reaction, then have the blood drawn and tested immediately. Absolutely no delays.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I would also like to add the following tests, though I think the CPET should only be done by patients who think they will handle it, and even the TTT needs to be treated with caution:

1. 2 day CPET.
2. Tilt Table Test
3. Sleep study
4. Quantitative EEG (using latest software)
5. As of next year, I suspect, a metabolite study using the latest mass spectrometry. This is likely to first be available via Stanford University.

The last three should be non-invasive and relatively safe.

With respect to mast cell disorders I think the mass spec test may show a signature if we can get enough data to go looking for one.

Testing for specific metabolites and hormones etc. after a provoked challenge like CPET might be a good time to do so.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Other sources put the half life of PGD2 at less than two minutes. Its also important to NEVER test it when you are sleepy or sleeping a lot. Its a natural secretion of non-mast cells in the brain, and if you are sleepy then it will be high regardless of any mast cell problem. Indeed for most people the brain secretes a lot more PGD2 during the 24-hour day than the mast cells do. Its also possibly affected by dietary factors, with a diet high in polyunsaturated fat being a risk of increasing it, and low polyunsaturated fat being a risk of decreasing it. So what is eaten in the hours and weeks before a test might alter the results.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I should add a caveat to testing while sleepy. If the sleepiness is sudden onset after something that might trigger mast cell activation then that is a different situation. PGD2 induces sleepiness, regardless of the source.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
The other problem is PGD2 probably has highly variable levels. You could wind up measuring it on a high or a low. To be more certain you would have to be at the testing lab, undergo a reaction, then have the blood drawn and tested immediately. Absolutely no delays.

Not disputing the complexity/variability but isn't PGD2 a 24hr urine test?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Not disputing the complexity/variability but isn't PGD2 a 24hr urine test?
Yep, and with a half life of seconds to minutes I think that is highly unreliable. An immediate blood test is needed. You might be able to get away with freezing the blood sample in liquid nitrogen which will buy you more time.

Now its not clear what secondary metabolites are stable that might appear in urine. However most of these have alternative causes, I don't know you can be sure you are measuring those accurately in urine.

If you don't think this is right, look up the PGD2 half life online. It varies by study, but 30 minutes is the longest I found, and one study was a couple of minutes.

If they have a stable reliable half-life for a reliable metabolite I would like to see their validation studies.

I think the all-time highest PGD2 would be found in African Sleeping Sickness.

It also looks like just sleeping badly will raise PGD2, which will induce fatigue related to needing to sleep. Almost everyone with ME, and maybe everyone, sleeps poorly. I expect most of us will have elevated PGD2 much of the time, quite separately from mast cell disorders.

I cannot say much about the validity of other tests, but I am wary of 24-hour urine testing for PGD2 unless they have very good reasons to do so, that are published, and preferably validated multiple ways ... even better if they are independently validated.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
If you are thinking of a mast cell problem, you might like to consider adding serum ferritin levels to those tests, preferably as part of an iron workup. Ferritin is a general marker of inflammation and is raised in mast cell disorders. Its not specific however, but looking at this might also rule out haemochromatosis or alert you to the risk.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I am going to be doing these tests. I think I definitely have a Mast Cell issue. I have an appointment with my dermatologist in a few weeks but I suspect they won't know this stuff and may need an immunologist for how to deal with this.

How likely are we to have anaphylaxis from this?

my uncle with his systemic mastocytosis gets anaphylaxis a lot and has told me that when he has to go to new hospitals, he's found they often cant even recognise when someone is having anaphylaxis.