Category Archives: Mast Cell Activation Disorder

Home testing for histamine

Back in October I wrote in this post about some researchers from Hong Kong who were in the process of inventing a sensor which works with your mobile phone to test for histamine in foods.  There are a handful of other researchers around the world who are also working on ways to test for histamine in foods, but the Hong Kong group seemed to be the closest to development so I contacted them to find out more.

They had principally built the device for use in the food industry, so that supermarkets and food manufacturers could test their foods for spoilage, but when I told them about MCAS and HIT patients they were extremely interested in our plight – they didn’t know there was a patient population out there who were desperate for a way to test for histamine in foods and had never considered selling the device to the general public.

They were still working on a prototype but asked me if I’d like to test it and give them feedback.  Is the Pop Catholic?!  I said I’d love to, but by Christmas had heard nothing from them.  Last week I emailed the team again who replied straight away to apologise for not being in touch.  Apparently they had had some issues with the chip inside the sensor device, and one of the researchers was currently in Taiwan liaising with another company to produce the chip.  He did, however, send me a video of the device and asked for my comments.  I’m not sure how much I’m allowed to say as obviously there is the competition to think about, but the device looks straight forward enough to use if a little fiddly.  It isn’t the case of sticking a probe into a food item and taking a reading which is what I’d kind’ve had in mind, but once I’d got my head around the fact it will be more complex than that I still think it’s going to be usable by the public, at least in a home environment if not in restaurants or on the run.  They are hoping to streamline some parts of the process before it becomes generally available.

One of the researchers is coming over to London in February and asked for a meeting with me, but unfortunately he’ll be in London and I’m not sure I feel up to travelling 600 miles just to have a half hour meeting :-/  I was hoping one of my good friends who lives nearer the capital would be able to attend instead, but unfortunately she’s really unwell at the moment and doesn’t feel up to it.  It feels like a hugely wasted opportunity 😦

Obviously I’ll keep you all informed of developments.  Any chance to test for histamine in foods would be a massive bonus in mine, and many of your, lives.  The first thing I’d look at is tomatoes………….how I miss them……..closely followed by tea!

 

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Weekly roundup

I’ve had another busy week.  I still can’t work out why my life is so constantly hectic, though the fact that because of my energy limitations I have to fit an entire day into 7 hours probably has a lot to do with it!

Tuesday was long, stressful but ultimately exciting.  I picked up my new little Yaris electric hybrid car!!!  I found it at Toyota online but it was at a dealership 60 miles away, so I faced a 1¼ hours drive there and back on a notoriously crap road to collect it, but I love it and think it was worth the trip.  The dealership have been a bloody nightmare though.  From day one they  have lied and tried to rob me.  The car hasn’t been serviced for 15 months and had the wrong tyre pressures.  At one point on Tuesday I had a heated argument with the sales manager after he stood in front of me and lied to my face, which made the whole thing incredibly stressful.  So after I got home I made a formal complaint to the Managing Director of the group at their Head Office.  The car itself is fab though, if a little complicated, and I’m still figuring out how everything works.  When on full beam the headlights dip themselves when they sense oncoming traffic, the car also senses road speed signs and warns me if I’m driving too fast, it has automatic climate control, keeping the car at a set temperature, and it senses if you’re about to crash and automatically applies the brakes (would have been handy back in October!).  It practically drives itself 😉

Wednesday night was the first Camera Club after our Xmas break and I gave a talk on my DPAGB distinction experience.  I’ve had a dry, tickly cough, which I think is reflux related, for about 6 weeks now and it’s driving me insane so I bought some Pholcodeine cough medicine to try to suppress it.  Knowing how I react to painkillers, and knowing the medicine contains codeine, I tentatively tried a couple of 5ml spoonfuls during the day and all was fine, so 20 minutes before my talk I took another 5ml spoonful……………and had an anaphylactic reaction.  FFS.  So I gave my speech with my heart hammering, my face flushing, my brain in cramp and feeling like I was going to pass out.  I just told everyone I was having a hot flush because it’s easier than trying to explain about MCAS :-/  The shitty thing is that I’m still coughing and can’t take anything to settle it.

The positive news of the week is that I’ve slept brilliantly 😀  This happens so rarely it’s been like a mini holiday from my illnesses and mentally I just feel so much better after having several 5 to 6 hour blocks of blissful uninterrupted kip.  Whoop whoop.

Friday I took Bertie to a new groomers to have a haircut.  When I first got him I tried a groomer in town but had a bad experience, so for the past 8 years I’ve been clipping him myself.  However my joints, and back, are now so painful I simply can’t do it any longer.  The new groomer seems nice and Bertie seemed happy enough when I collected him, so hopefully I’ll be able to use her again.

Today I’m hoping to finish off a talk on studio lighting I’m booked to do next month.  It’s taken ages to put together and during the next couple of weeks I need to practice it with my lighting props so that I can do it to time, but it’s been fun to do and because I have to know the ins and outs of the subject it’s also forced me to learn new stuff which is always a good thing.

I’ll finish with a little teaser.  I have an update on home testing for histamine in foods to share with you this week, so look out for that post!

Weekly roundup

I’ve found this week physically quite tough.  I have been ovulating and it’s now become as painful as my actual period.  I have felt nauseous for 4 days, to the point where I can barely eat.  My entire insides hurt – my ovaries hurt, my bowel hurts, my stomach hurts, my bumhole hurts (I know, TMI!) and I have sharp stinging pains into my pubic bone.   I pray to God every day to make my periods, and therefore my endometriosis, stop but so far He’s not listening (he’s a man, what can you expect?).  To add insult to injury I have had wicked hay fever for a month, with very sore eyes and a sneezy, itchy bunged up but runny nose.  Both my best mate and I have been getting hay fever in December for about the past three years and we can’t work out why.  The theory is that you’re secretly allergic to dust mites, or your pets, and because you have all your windows shut in the winter it makes the allergy worse but I don’t buy it.  I close my windows against bad weather around the end of October, but I don’t get hay fever until usually the week before Xmas and it lasts well into January.  I am allergic to pine trees (just touching them brings me out in a rash), so I’m wondering if it’s because of all the Xmas trees which are cut down, displayed, then shredded?

Tuesday night was the last evening of our beginner’s photography class, which we hold monthly during the winter.  I help teach the class, along with two other Camera  Club colleagues, which I enjoy but oh boy does it take it out of me and to be fair I’m glad it’s over with for another year.  Doing anything after 4pm in the afternoon simply kills me.

After two months of wrangling with my insurance company over my tiny little car prang we finally agreed a settlement, which means I can trade-in my current car and pick my new car up this week.  I am so excited!  However, today I need to clean the inside of my current car out.  Bending is really painful for my back and hips, and trying to hoover all the nooks and crannies when my left shoulder and rib are already stupidly sore will not be fun.  These are the times when having a Husband would come in handy 😉

The reason my back, hips, ribs and shoulder are currently so painful is that I did something about my New Year’s Resolution.  I accepted that I am not going to find the house of my dreams any time soon with the money I have so I decided to revamp my spare bedroom and dedicate it to all things photographic.  I’ve approached my neighbour to buy a tiny piece of waste land he owns at the top of my drive and if I can put a large shed on there I can move all my stuff-that-I-don’t-want-to-get-rid-of (like my spare bed) in there out of the way.  So far, though, he’s ignored my letter and I have all my stuff-that-I-don’t-want-to-get-rid-of piled in a corner of my lounge!

Three months ago the outside intruder light on the side of my house stopped working.  It happens regularly, so I decided to replace the ancient light with a new LED one.  All the wiring was there it was simply a matter of switching the lights over which would take about 20 minutes, but could I get an electrician to come and do such a tiny little job?  That would be a big, fat no and I have been stumbling around outside in the dark for yonks.  My cousin’s husband is an electrician but he’s been poorly so I didn’t feel I could ask him, however I heard this week that he was feeling much better so I asked him over and he did it no problem (and didn’t charge me, thank God as I’m skint).

We still haven’t heard from the hospital about my Dad’s lumbar puncture.  He was seen by the emergency clinic so I’ve no idea why we’re having to wait so long – it’s yet something else I’m going to have to chase up *sigh*.

I honestly thought I had nothing much on in the New Year and would have a restful January to recharge my very depleted batteries.  No such luck.  Life constantly throws curve balls at me and I just live in a permanent state of absolute and utter exhaustion.  This year I am determined to have an actual holiday – I think it’s the only way I will be able to have a proper rest away from the demands of running a home and caring for my parents.  I’d better start saving!

 

 

New Year Reflections

Tomorrow sees the start of a brand new year.  It’s just another day but most of us do some kind of reflecting over the twelve months just gone and the twelve months still to come.

2018 was probably my most rewarding year ever.  I had no idea that at the age of 26 my life would basically grind to a halt and that having a daily shower would become so beyond me I wouldn’t manage it for the next 25 years.  So this year to have won my first photographic gold medal, my first trophy, been accepted into the Masters of Print hall of fame, have achieved DPAGB (Distinction Photographic Alliance of Great Britain) and to have given my first public speech on photography feels so surreal it’s like it’s happened to someone else.  I still can’t quite believe I pulled it all off!

Not only that, but my health has been really quite stable with no major relapses despite all of the above.  I wish the bloody menopause was over, but other than that you’ll just have to trust me when I say I’ve had worse years health-wise.  Much, much worse.  Which isn’t to say this year has been without its challenges, some of which I will write more about in the coming weeks, but just that nothing catastrophic has happened and for that I am truly, truly, thankful.

While I was out on my scooter this afternoon walking Bertie, I was thinking about what I’d like 2019 to hold.  My Dad’s health will take precedence over the next few weeks when, fingers crossed, we’ll finally find out what’s wrong with him.  He had his lumbar puncture on Thursday but it didn’t go smoothly – they had 3 goes to tap his spinal fluid without success, and told him he’d probably have to go back and have a guided x-ray, but as it’s a 180 mile trip and he’s already been twice in the last week he pleaded with them to have one more attempt.  So, with him bent over a stool, they had another bash and this time were successful – phew!   So we’re now just waiting for the results.

I do have something exciting to look forward to, though.  In the next couple of weeks I will take possession of a new (well, new-to-me) car!  I’ve gone green(ish) and bought an electric hybrid!! It’s the nicest looking car I’ve ever owned but the biggest reason I’ve chosen a hybrid is to hopefully cut my petrol bill which, living in the countryside and having to drive miles to anywhere, is astronomical.

The next event on the horizon is another photographic distinction, this time an international award through FIAP (Fédération Internationale de l’Art Photographique) the main photographic body in Europe.  I’ve prepared my portfolio which is ready to be posted off, but I won’t know if I’ve been successful until the end of March.  If all goes to plan I can use the letters AFIAP after my name, as well as DPAGB – I’ll be so posh the Queen will be inviting me for tea next 😉

The biggest thing on my mind as I tootled along with the dog, however, was my current housing situation.  I love my little 2 bed cottage, however now that my photography has become such an all consuming passion I’d like a house big enough to have a small photography studio.  I currently use my spare bedroom, but it’s only 8ft x 10ft and it’s a massive struggle to get far enough back with my camera to photograph a whole person.  I also have an ever expanding set of costumes, props, lights and equipment let alone a huge A3+ printer and boxes of A3 paper  and mountboard which have to be stored flat, so have literally run out of space.

I would actually love a bungalow or single storey cottage.  I can’t believe I’m even saying that as bungalows in my head are where old people live, but the fact is not having stairs would benefit my knackered legs and if I do need an electric wheelchair in the future a bungalow could accommodate that.  The thought of having my bedroom, where I spend nearly all my time, at ground level maybe with patio doors opening onto a little garden also sounds like my idea of heaven and I’m sure Bert would love it too.

The problem is that I don’t actually want to move because I absolutely love the village where I live.  It’s in the middle of nowhere but still only 12 minutes drive to town and my parents.  It has gorgeous views.  I think of my next door neighbours as second parents and look forward to our little chats every day as I walk past their door to my garage.  My dog walker also lives in the village and we’ve become really good friends.  I know everyone, I feel safe here, I’m surrounded by fabulous walks for Bertie and fabulous wildlife to photograph and it truly feels like home.

However, there are no suitable houses for me to buy in my village.  There are a few bungalows, though none are for sale or likely to come up for sale, and even if they did I know for a fact they would be out of my price range.  Which leaves me with a huge dilemma.  The thought of leaving my village, my friends and my support network makes me feel sick but I can’t think of a solution which would get me my studio space and my ground floor living unless I move, and it would have to be way further from town and my parents where houses are cheaper.  I really don’t know what to do, but feel that this year I have to stop living in cloud cuckoo land where I win a couple of million on the lotto, buy a farmer’s field and build my dream home, and start being realistic and making some hard decisions.

Of course, life is what happens while you’re planning it – anything could happen and probably will!   I could meet Prince Charming who whisks me off to his 20 bedroom Castle, or I could fall down the stairs and break both my legs making a move impossible 😉

To all my friends and followers, my wish for you in 2019 is everything you wish for yourself.  I think we all need to remember, though, that although having dreams and goals is important, today is what matters.  Happiness is a choice and doesn’t lie in some mythical point in time when you’re rich, or thin, or healthy, or have a bedroom that opens out onto the garden and an en suite photography studio 😉   The trick is to find joy in every day, then if your dreams don’t materialize you will still have loved the life you actually lived.

 

Christmas Roundup

I’m a bit schizophrenic when it comes to Christmas.  On the one hand I can’t wait to put up my pretty tree and all my twinkly Christmas lights, and on the other it’s a time of year which often makes me feel incredibly lonely and isolated and brings on massive FOMO.

2018 sees my 24th Christmas with M.E. and the 21st Christmas I’ve spent alone (ie without a partner).  Most of the time I’m perfectly happy in my single-ness, but there’s something about being underneath a soft throw on my sofa, with the fire blazing and the lights twinkling that always makes me think it would be so lovely to have someone to snuggle up to, preferably someone whose fur doesn’t make me itch and whose beard doesn’t smell of tripe 😉

It’s also the one time of the year when I miss drinking.  I’d love to be able to just have a nice fruity Chardonnay alongside my sour cream n onion Pringles, or some Prosecco with my Christmas dinner.  I personally don’t think it’s too much to ask, but sadly my mast cells think differently.

This week has been one of the most stressful of the year, but I’m so thankful that now my Dad is going to get the specialist help and care he’s needed for so long and a huge weight has been lifted from my shoulders.  Whether or not he makes any kind of recovery I know that I have done my best for him and that’s all anyone can ask of themselves.

Friday night I had my parents over for dinner, alongside my two lovely neighbours, and we had a nice evening.  Because of my own health it’s not often I can do any of the social things that  healthy people take for granted, but I always make an effort at Christmas to host this one dinner party because it makes me feel normal just for a night, even if my normal is spending the evening with four people almost in their eighties!  It will be the only social event I will have over the holidays and the only time I will have any visitors to my home.  Even the sodding dog walker is taking a fortnight off, ditto the cleaner, so not a single person but me will pass over my doorstep.  It’s a bugger that I’ll have to eat all the After Eights myself rather than sharing them, but it’s just a cross I’ll have to bare 😀

I will visit my parents for a  few hours on Christmas day.  We will unwrap our gifts, have just a light lunch, then I’ll come home around 3pm, collapse into bed and pray there’s something decent to watch on the telly.  We have our roast Christmas dinner on Boxing Day, when my folks and I go out to a nice restaurant where a chef cooks for us and someone else does the washing up.   It suits us and means that Christmas is as un-exhausting as it can be.  The rest of the week will be like any other, with the added burden of having to walk Bertie twice a day every day and having to change my own bed sheets which nearly flippin kills me considering I have a king sized bed and a duvet cover that is evil.

I hope you all enjoy Christmas, whatever you’re doing or whoever you’re sharing or not sharing it with.  I shall leave you with a little ditty I wrote and which I put on my blog every Xmas because I can’t be arsed to think of a new one 😉  It is sung to the tune of Once in Royal David’s City.

Once in snowy North West England,
Lived a lonely, country girl
Mast cells that were sorely rampant
histamine that made her hurl
Jak she was that poorly child
M-CAD was that illness vile.

Subluxations sent to try her
Joints all wandering out of place
Splints and braces plus her scooter
helped her join the human race
Jak she was that poorly childmistletoe
E.D.S that illness vile

Monthly torture from her cycle
makes her feel that she is cursed
Menopause that drives her crazy
She’s not sure yet which is worse
Jak she was that poorly child
Endo is an illness vile

Nervous system going bonkers
Pins & needles all the time
She would kill to just get tipsy
she’s allergic to the wine
Jak she was that poorly child
POTS doth make an illness vile

She is tired beyond all reason
Half her life is spent in bed
That Hugh Jackman is her Carer
fantasies just in her head
Jak she is that poorly child
M.E. is an illness vile.

Doctors told her she was crazy
symptoms were all in her head
She just hoped they’d catch her illness
or that they would drop down dead
Jak she was that poorly child
Chronic illness truly vile.

Tests which showed she’s really sickly
She had known this all along
Blew a raspberry at the doctors
who all said there’s nothing wrong
Jak she is that poorly child
Finding proof, though, was a trial!

 

merry xmas

 

 

 

 

Weekly roundup

As you know from my previous post, Monday I took my Dad to see the neurologist about his leg weakness, hand spasticity and dizzy/vomiting spells.  The Consultant thinks none of it is down to his spinal stenosis and is more likely to be down to his MGUS (a precursor to blood cancer) and has referred him to Haematology.  My Dad doesn’t understand any of what’s going on, has no clue what large fibre neuropathy is and just thinks he’s going to have his decompression surgery and be totally back to normal in 3 months.  He’s going to be devastated when that doesn’t happen 😦 The Hospital rang this week to say he’s booked in for his surgery on New Year’s Eve!  I just hope the Surgeon hasn’t been on the cooking sherry over Christmas!

I have been feeling really rough all week.  My sodding periods are making me feel awful – exhausted, very muzzy headed and both my back and endometriosis pain is off the charts 😦  However, my bestie drove through on Tuesday and we went out for lunch, which was lovely and helped take my mind off everything.

Weds was the last Camera Club meeting of this year.  We had a quiz and a little buffet and I had a fun night, though I still miss my friend Linda who left.  We now have a break for 3 weeks over Christmas and although I’ll miss the company I won’t miss coming home at 10.15pm in the dark, howling winds and sleet.

Speaking of Camera Clubs though, if you remember I was guest speaker at a Scottish Club in October and must have done OK as I’ve been asked to go back again next Season!  I’m not sure I have enough new material for another 2 hour talk, so have said I’ll think about it and get back to them.

Friday I collected my car from the body shop after my little prang.  The alloy wheel is still all scuffed though, so now I’m going to have to ring the insurers and asked why they didn’t request that be put right.  It’s totally pissing me off because my car is 5 years old and I’d half agreed to trade it in for a newer one until this happened, so now I can’t do anything until it’s all done and the paperwork is sorted.  If the car I have my eye on is sold in the meantime I’ll be well hacked off.

Today my Dad is going to Newcastle for yet another MRI scan, this time on his upper back and neck to see if there is any further stenosis or lesions on his bones.  I’m making my brother take him though being as though it’s the weekend and he’s not at work – I was in agony for a week last time I did the 180 mile drive.  While he’s away my Mum has asked me to take her to all our relatives graves to lay Christmas wreaths as neither she nor my Dad can bend now to do it.

I received a Christmas card and letter from one of my friends with M.E. this week.  We got ill at roughly the same time, the only difference being my friend was a teenager.  She is now 40 and has been virtually bedridden for over 2 decades.  She is still unable to stand for more than a minute without passing out and is currently lying, yet again, in a dark room and without sound otherwise she has a seizure.  My heart broke for her, yet I was selfishly thankful I was no longer in that position myself.  I have no idea how she’s kept her sanity all these years or the will to keep fighting.  Patients with severe M.E. are the strongest people I’ve ever met – unless you’ve been there you have no idea the tortures of hell this disease can inflict and the strength it takes just to get through the next minute let alone a whole day/week/month/year/decade.  People ask me how I can remain so cheerful and bubbly despite my health and other issues and the reason is that I am so grateful to no longer have severe M.E. and to actually have a life, any life.  I can still do stuff, despite my symptoms, when I couldn’t do anything when I was severely ill with M.E., and for that I am grateful every day of my life.

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”.