Mast Cells & M.E.

Leading Doctors in the M.E. field are slowly coming to the realization that Mast Cell Activation Syndrome (MCAS) is common in their patients, with some finding issues with mast cells in more than 60% of the people they test (see this post by my friend and fellow blogger over at Rag & Bone Shop of the Heart).

Ever since I first learned about MCAS I knew, for sure, it was implicated in M.E. as I explain in my Canary post.  In particular it explains why POTS/orthostatic intolerance is almost universal in M.E. patients, why reactions to foods, drugs and the environment are so prevalent and why nothing is ever found on testing, despite some patients being profoundly ill (no-one has been testing for mast cell mediators!).

Where I disagree with most clinicians looking at the link between mast cell activation and M.E. is that doctors think it only applies to a sub-set of patients, while I think it is implicated in the disease in all patients.

I am convinced I was born with MCAS.  I think it can either be congenital (in my case it seems to be linked to my hEDS) or acquired later in life due to an immune event like a virus, vaccination or surgery.  I have photos of myself as a baby flushing my cute little face off and have had dermographism ever since I can remember, but I had no clue I had MCAS until I was in my mid forties because it wasn’t a problem until the peri-menopause set it off.  My point being it can go undetected in the majority of patients until something happens to rocket it into orbit.

For a decade I was life-threateningly ill with M.E., yet I could eat whatever I liked, take most medications without a problem, didn’t have hives, asthma, itchy skin or any of the other symptoms associated with MCAS.  But that didn’t mean it wasn’t there, lurking.

Looking back I’d flushed all my life (I didn’t know it was flushing, I had no idea why I went bright red all the time!), I could skin write and I’d been unable to drink alcohol without my face swelling or passing out since developing M.E (which I now know is grade III anaphylaxis), but other than that there were no obvious signs of mast cell mediator release.

In my mid thirties, after having M.E. for ten years, I started to become allergic to medications, many of which like paracetomol (tylenol) and travel sickness tablets I’d taken all my life.  I developed a tight chest around certain smells and the print ink off newspapers made me wheezy.  I also developed severe migraines almost out of the blue, hay fever each spring which I’d never had before in my life and started getting itchy lumps on my bum which I had no idea were hives.  I also had what doctors called either “A-typical seizures” if they believed in M.E., or “panic attacks” if they didn’t believe in M.E., but which I now know was anaphylaxis.

In my mid forties I started peri-menopause and all hell broke loose virtually overnight.  It was then I began reacting to all medications and nearly every food I put in my mouth, to the point where I honestly believed I’d die.  I’d had M.E. for 18 years at this point though and although there had been hints all along if I’d known to look for them, my mast cells hadn’t gone berserk enough for me to be really troubled by them or to link them to my M.E. in any way.

All my friends with M.E., without exception, have an allergy of some kind and the more severely affected by M.E. they are the more allergic they seem to be.  My best mate has never been severely affected, yet still has asthma, hay fever, POTS and auto-immune diseases (confirmed Coeliac in her thirties despite having no symptoms whatsoever at the time and confirmed Palindromic Rheumatism in her forties after suddenly developing swelling joints and skin problems).  It’s way too much of a coincidence that nearly all long term M.E. patients have, or develop, allergic reactions, many have auto-immune diseases and all have some kind of orthostatic intolerance.  There has to be some kind of missing link and, for me, that’s misbehaving mast cells.

It’s the only thing which fits.  It’s the only thing which causes seemingly unrelated systemic symptoms like insomnia, back pain, diarrhea, migraine, food allergies, breathing problems, fatigue, that tired-but-wired feeling, nausea, inflammation and on and on and on.  And of course no-one has been testing for it, which is why no-one has been able to find a test for M.E.

So if mast cells underly M.E. why don’t all patients tested have evidence of mediator release?  I’m just a patient and no kind of expert but I do have a couple of theories:

  • Because there is no test for M.E. lost of people are diagnosed with the disease that don’t actually have it.   I know this because of all the ‘cured’ stories I read in the press from people who clearly didn’t have M.E. in the first place, yet were diagnosed by GPs because the disease has become a dumping ground for anyone with unexplained fatigue.
  • Despite being seriously ill, having anaphylaxis every time I ate and having a bum covered in hives my histamine test when I saw Dr Seneviratne was still within the normal range!  Very high but not quite high enough to be considered abnormal.  I didn’t have any other tests, like leukotrienes and chromoglanin A, done because five years ago these weren’t available in the UK and I was only diagnosed with ‘probable’ MCAS based on my history and symptoms.  So it doesn’t take a rocket scientist to work out that the current mediator release tests simply aren’t sophisticated enough.  They’re looking for acute mediator release, not the chronic mediator release experienced by MCAS sufferers.  Maybe we need to re-think what the maximum levels are, or maybe we need to repeat test weekly over a period of say a month or two?  I’d love to be tested while I’m having my period because my reactions are so much worse then.

Being one of the first people to talk about the link between mast cells and M.E. I am delighted that the medical profession finally seem to be catching on and that M.E. patients in America at least are now being more routinely tested for MCAS.  We really need a large scale study of severely affected patients though, and much more sophisticated tests to check for chronic mediator release, but at least we finally seem to be making a start.  “The journey of a thousand miles begins with one step”.

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4 thoughts on “Mast Cells & M.E.

  1. lyuba

    Hi Jak,
    I have recently received my son’s test results from the lab in Sheffield for urinary Prostaglandin D2 (and metabolites).
    I can’t describe the relief I felt when the report in black and white confirmed my belief that we are all suffering with MCAS. The report said that raised PG levels suggest MCAS and that he should be investigated for the condition! I never expected that after coming across a brick wall of incompetence amongst all of the specialists I had seen including a Professor of immunology for goodness sake!
    This was done in an NHS lab. This test can be requested by your GP and a spot urine sample should be sent to the lab either on ice or frozen. They also do urinary N-methyl histamine. One sample will cover both tests.
    Hope this helps.
    Lyuba

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    1. Jak Post author

      Yayyy, I’m so chuffed for you that you’ve finally got some proof Lyuba, I know how hard it’s been for you.

      I’ve known about this lab for a while but you’re the first person I know who’s used it. Very reassuring to know that you’ve had positive results.

      As I haven’t seen anyone about my MCAS since my diagnosis 5 years ago I was thinking of asking my GP if I could have the test done to check my levels – this has spurred me on.

      Jak x

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      1. lyuba

        Hi Jak,
        You absolutely should check your levels. Here is the link to the tests they do:
        https://www.immqas.org.uk/pru.asp?S=417709555&C=1252&AID=51
        Their number: 01142715552
        On the website each test has a very detailed info inc references to research which is very helpful. I personally spoke to Dr Graeme Wild who works at the lab. He was incredibly helpful and very knowledgeable about the tests.
        Both PGD2 and N-methyl histamine are advised to be analysed from 24h urine collection, however as the sample needs to be frozen, we used a spot sample and it was fine. It is very important that the sample is immediately frozen as PGd2 (I think) can degrade after 1-30 min. They do, however, analyse other PGD2 metabolites which are more stable, but degradation plays a major role in the results.
        You did mention that your N-methyl histamine was not as high as you’ve expected. I don’t know, but I suspect you had your test done at Doctors Laboratory in London. I am not 100% certain as it was a long time ago, but DrsLaboratory levels were higher and I am not sure the results were creatinine adjusted. You could check your results against their normal values. Keep in mind it has to be creatinine adjusted.
        It would be also interesting to know if there are any mast cell specialists at Sheffield hospital as the lab’s medical staff seem to be clued up on this topic.
        A few weeks ago I went to a MastoUK conference. It was great. They had 3 doctors doing their presentations on MC, MCAS and alpha tryptasemia. The name of the doctor specialising in MCAS is Bethan Myers. She was good. She certainly knew the condition. She works at Leicester NHS foundation trust hospitals. I have requested an appointment referral for my daughter to see her. Fingers crossed.
        A couple more things: aspirin (as you probably know) lowers PG as do COX2 inhibitors, but many people react to aspirin. The recommended dose for aspirin is 70mg, but some take as much as 300mg x 2 daily.
        And the last thing and I believe potentially the most interesting is TOFACITINIB.
        Here is the link that describes a case study with apparently fantastic results treating MCAS.
        https://www.google.co.uk/url?q=http://www.gidoctor.net/client_files/File/Consent-for-Xeljanz-(Tofacitinib)-for-MCAS.pdf&sa=U&ved=2ahUKEwiW4J6Vn5_fAhUIGewKHUNDBBYQFjAFegQICBAB&usg=AOvVaw1Nh-Z9oI3tbdZP2kPMkARE

        Doctor B.Afrin also mentions it:
        https://www.ncbi.nlm.nih.gov/m/pubmed/28382662/

        Immuno suppressant therapy perhaps is not the ideal option, but as Dr B.Afrin said:” it’s hard to imagine a disease more complex than mast cell activation disease…”
        We can’t expect it to be cured with a cup of chamomile, can we?
        All the best.
        I hope some of the info been helpful!

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  2. Jak Post author

    Thanks so much for all that 🙂 Sorry, your comment got held in moderation as it contains lots of links and wordpress thought it might be spam! Very brain fogged and shattered today but I’ll check out the links and info when feeling more with it. Jak x

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