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

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Hello!

Given the typical symptoms, I have recently proposed that ME/CFS is nothing more than a mast cell activation disorder. One of the good things about this, if it is indeed true that ME/CFS is a mast cell disorder, is that mast cell disorders are testable and treatable within the confines of mainstream medicine.

Given the similarity in symptoms, I think it is important to add a fifth test to the mix, to rule out carcinoid syndrome.

The five test, all available from mainstream labs, are:
Happy testing!
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Hi, nanonug! Do you know how much these tests cost?

ETA: I see the fee on the links you provided.

Oops, I have to be an authorized user to see the fees.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
I've had two of these done. Both normal if I remember right. Will have to look up the others. Thanks for listing this.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The only one of those Ive had done is the tryptase test and that was only done by a specialist as I have an uncle with systemic mastocytosis. (one can still have mast cell issues an have it not show on that test).

I was worried that I may of have Carcinoid syndrome for a while as I had two test result abnormalities which occur in Carcinoid. Ive ended up dismissing it lately as maybe unlikely as I have another test result abnormality which shows abnormality opposite to what sometimes appears in carcinoid. Unfortunatetly thou no doctor has done the test to rule it out (even with the 2 abnormalities I have which occur in it).
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
The only one of those Ive had done is the tryptase test and that was only done by a specialist as I have an uncle with systemic mastocytosis. (one can still have mast cell issues an have it not show on that test).

Tania, unfortunately you are right, tryptase may be negative and one may still have mast cell issues. Look at this abstract: "Polycythemia from mast cell activation syndrome: lessons learned". In particular, it says, "Serum tryptase and urinary N-methylhistamine were normal, but urinary prostaglandin D2 was elevated. [...] Gastrointestinal tract biopsies were histologically normal but revealed increased, aberrant mast cells on immunohistochemistry; [...] Mast cell activation syndrome, recently identified as a clonal disorder involving assorted KIT mutations, was diagnosed."

I was worried that I may of have Carcinoid syndrome for a while as I had two test result abnormalities which occur in Carcinoid. Ive ended up dismissing it lately as maybe unlikely as I have another test result abnormality which shows abnormality opposite to what sometimes appears in carcinoid.

Would you mind elaborating a bit on the two test abnormalities and also the opposing result? Thanks!
 

Lou

Senior Member
Messages
582
Location
southeast US
Hello!

Given the typical symptoms, I have recently proposed that ME/CFS is nothing more than a mast cell activation disorder. One of the good things about this, if it is indeed true that ME/CFS is a mast cell disorder, is that mast cell disorders are testable and treatable within the confines of mainstream medicine.

Given the similarity in symptoms, I think it is important to add a fifth test to the mix, to rule out carcinoid syndrome.

The five test, all available from mainstream labs, are:





5-HIAA (to rule out carcinoid syndrome)
Happy testing!



Hi nanonug, would you elaborate a bit on prostaglandin D2 role in all this? Thanks.
 
Messages
15,786
5-hydroxyindoleacetic acid: 0.08 mmol/mcr (0.00 - 20.00)

Haven't tested the others, but histamine has been normal twice (mid-range and below).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Would you mind elaborating a bit on the two test abnormalities and also the opposing result? Thanks!

Sorry I just went to look it up and realised I confused carcinoid syndrome with multple myeloma.. its that which I thought at one point I could have and had had 2 of its test abnormalities.
 

aprilk1869

Senior Member
Messages
294
Location
Scotland, UK
My dad has high levels of 5-HIAA on his Optimal Nutritional Evaluationfrom Genova, 17.5 (3.8 - 12.1). I see that Carcinoid syndrome can cause fibrosis which is interesting because he has Dupuytren's contracture and I believe he has plantar fibromatosis. Both of these conditions are caused by too much collagen being produced in response to an injury. I believe that this can be tied in with glutathione depletion because glutathione is needed to regulate TGF-B1 which in turn triggers the accumulation of collagen.

At the moment I'm trying to get a lot of this on paper to give to his GP because nobody has a clue what's wrong with him, they just want him to take sleeping pills, pain killers and anti-depressants.
 

aprilk1869

Senior Member
Messages
294
Location
Scotland, UK
So, has your dad done any additional testing for carcinoid syndrome?

I literally only got the results last week so still trying to make sense of everything. Just about everything is showing up wrong, gut, neurotransmitters, vitamins, detoxification, ammonia... you name it.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
That's okay, no worries, it was probably a dumb question, anyway. Hope you get some rest.
Hi, Lou. The (inflammatory) PGD2 is degranulated from Mast Cells, along with histamine.

I think it's not actually known how much each of those two separately contribute to effects like vasodilation and increased blood vessel permeability, but they both do. However, I did post a study here a few weeks ago somewhere which showed that by inhibiting PGD2 alone, you abolish the niacin flush.On the other hand, PGD2 alone can cause the flush.

Meanwhile, quercetin inhibits histamine and PGD2 release from Mast cells - better than any available drug.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Another signalling chemical which doesn't get mentioned so much is bradykinin, which causes vasodilation but also typically causes the pain from things like nodes-swelling or post-exercise-soreness.