1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

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

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Sep 28, 2012.

  1. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    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!
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,504
    Likes:
    1,853
    Midwest, USA
    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.
  3. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    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.
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,920
    Likes:
    4,882
    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).
  5. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    I am afraid I don't know. If your doctor is receptive, you could talk to her about establishing an account with Mayo Labs. I know that Quest Diagnostics also offers at least some of these tests (if not all).
  6. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    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."

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

    Snow Leopard Senior Member

    Messages:
    2,296
    Likes:
    1,755
    Australia
    Hi nanonug, what is the typical (symptom based) clinical presentation of a MCAS patient (based on the literature)?
  8. Lou

    Lou Senior Member

    Messages:
    474
    Likes:
    299
    southeast US


    Hi nanonug, would you elaborate a bit on prostaglandin D2 role in all this? Thanks.
  9. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    I refer you to my original post in which a laundry list of symptoms is enumerated; obviously, no one will have all of them: ME/CFS is a mast cell disorder (hypothesis).
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,232
    Likes:
    8,828
    Amersfoort, Netherlands
    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).
  11. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    I guess you can be confident you don't have carcinoid syndrome, then.

    Are you testing histamine or N-methylhistamine? The former is considered useless...
  12. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    I am feeling too tired to elaborate endlessly. Would you be more specific in your request, please?
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,920
    Likes:
    4,882
    Sth Australia
    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.
  14. aprilk1869

    aprilk1869 Senior Member

    Messages:
    294
    Likes:
    57
    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.
  15. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    So, has your dad done any additional testing for carcinoid syndrome?
  16. aprilk1869

    aprilk1869 Senior Member

    Messages:
    294
    Likes:
    57
    Scotland, UK
    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.
  17. Lou

    Lou Senior Member

    Messages:
    474
    Likes:
    299
    southeast US
    That's okay, no worries, it was probably a dumb question, anyway. Hope you get some rest.
  18. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

    Messages:
    694
    Likes:
    237
    US
    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.
    Lou, nanonug and camas like this.
  19. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

    Messages:
    694
    Likes:
    237
    US
    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.
    Lou, merylg and nanonug like this.

See more popular forum discussions.

Share This Page