* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Sunday, December 1, 2013

Two (more) diagnosis, Lyme and Mast Cell Activation Syndrome.

Laying here in my nursing home bed complete with water bottles, meds, toilet paper, ice packs and my teddy bear, I feel pretty confused.

How and why did it all go so wrong for me and my health?

I don't really know, and may never know the full picture.

 I'm stuck in bed in a dark room day in, day out. Trying to feed myself gives me heart palpitations, I use a bed pan, the nurses wash me and I have a lot of pain.

I'm not complaining, I'm still alive, I still have a life, so I still have hope that it will improve and in the meantime, I try to accept what is. (Bad grammar included) But I do need, want, people to understand where I'm at, why I don't have visitors and why I don't keep in contact more frequently.

Though, I must add that I love short messages of support.

 There is only so much meditation, self loving and practicing mindfulness I can do.

I want to get better.

In hindsight some of the medications, actually MOST of the medications, I've tried, have helped initially and then, made me worse and I suspect it's just a matter of time before I can no longer tolerate the meds that I'm on.

I have been lucky to get some answers, and have two brand new tentative diagnosis's that I want to share.

Firstly, I tested positive to Lyme disease (Infectolab, Germany).

I have, bog standard, Borrelia Burgdorferi, a tick borne bacteria common in North America. It causes Lyme disease.

I probably got Lyme while living in Maine 2008 and it explains a lot of seemingly unrelated health things since then.

Of course, it could be a false positive. That is a very real possibility with this type of bacteria.

This thought niggles every time I undergo painful antibiotic treatment.

So why am I suddenly so sick, so much worse than my online friends (or so it seems) ? Why did I end up unable to move without instant screaming tinnitus, pain and autistic like communication skills last year? (I can still write much better than I can speak).

Some clues:

My major backward slide started accelerating last year during June/July 2012 when my treatments and symptom meds all got a bit complex. There was also mold and a lot of stress. My pain, brain fog, everything went downhill in what I hoped was a 'worse before you get better' pattern. It wasn't.

Fast forward;
- through several bad reactions to attempts at m.e. treatment
- a port infection and removal
- a three month hospital stay
- a great physician and pain doctor
- ketamine (unfinished treatment as I couldn't tolerate noise in ICU);
- A fibromyalgia spoken diagnosis
- opiates
- farewelling a great physician, who listened and pain doctor
- a new physician who didn't believe (as far as I could tell) in M.E and wanted to treat me by the 2002 cfs guidelines even after we explained that exercise makes me worse and gave him the number of an exercise immunologist who specialises in studying ME/CFS and who offered to meet with him
- lots of psychiatrists (where are the immunologists, neurologists, infectious disease specialists and allergy specialists when you need them?)
- A move to a great nursing home
- an accidental administration of 50mg naltrexone, instead of 1.5mg, while still on opiates prompting instant withdrawal symptoms,
- opiate induced hyperalgesia;
- more meds that helped to start with and then became intolerable
- new food intolerances
- the positive blood test for Lyme
and we are just about up to date.

I've had better years.

It hasn't all been bad though, I have new lows to improve from, yes, I appreciate the irony in that statement.

On bad days now, I think, 'is this as bad as the Night of Naltrexone' and usually it isn't. (Naltrexone blocks opiate receptors, and shouldn't be administered to anyone currently on opiate pain medication.)

Also, I've been working hard at self love and being kind to myself, accepting my life is hard and doing my best to learn what I can from this situation.

I find things to be grateful about everyday, like fresh fruit, the pretty moth in my room, the spider-eating gecko and the cute male nurses, it all helps. I truly believe it's possible to keep growing even when your world is shrinking and that's what I'm trying to do. There is always some light and hey I'm writing my first blog in ages.

Though it'll be my last for a while as I continue to need rest.

Now the second diagnosis:

The hardest part is that, my second tentative (I'm yet to see the specialist) diagnosis, Mast Cell Activation Syndrome, MCAS, scares the bejesus out of me.

A little background to how I got this diagnosis (not yet official, but it fits):
Old G.P, who has known me since childhood, has another patient very like me, who has been diagnosed with M.E./CFS and MCAS.

One of my weird things (apart from my sense of humour) since childhood, has been exercise and cold induced urticaria. Basically, itchy itchy skin anywhere I wobble and red hives from cold water. (Once prompting a life saver to consider closing the beach due to stingers, until I explained its 'just me'). I've also always had, POTS, heart palpitations and in hindsight exercise induced asthma (I was often very puffed after hockey warm ups, but determined not to show it).

Anyway, all this boils down to, Mast Cell Activation Disorder/Sydrome. MCAS.

So a lot of my current instant pain, heat and breathing symptoms are probably mast cells behaving badly.

Mast Cells are immune cells that degranulate a whole bunch of chemicals when triggered, including histamine, heparin, serotonin and more.

And mine are trigger happy.
And getting worse.

The thing that I'm struggling with is, IV antibiotics for Lyme disease trigger my mast cells. Once they are triggered they become sensitized and other, previously okay, things also trigger them. Like green tea, strawberries, female sex hormones, chocolate, all kinds of ice cream, adhesives, alcohol, sunlight, pain relief, anything good really.

I'm probably allergic to Brad Pitt now too.

To make matters more complex, it appears, (from my own frantic googling) that Lyme bacteria also cause Mast Cell degranulation.

Is everything a degranulation trigger? Yes, I suspect everything is, I suspect they trigger themselves.

Even the word degranulation, stresses me out and triggers degranulation.

The good news is that there are medications to help, mast cell stabilizers, which I'm trying, with limited success while on antibiotics.

I'm on:
Patanol eye drops in eyes and nose, Intal spinnaker capsules broken open and drunk (10 a day, this is sodium cromolyn) and a flixotide inhaler.

(Please don't ask me for medication advice, this is all I know and I'm only sharing it so other people have a starting point to talk to their doctor about).

Also the good old zyrtec/zantac combination helps block two of the four types of histamine released during degranulation. Currently there aren't any drugs to block H3 and H4 types of histamine.

So there you have it, three new tentative, (yes I can't count) diagnosis, Lyme, Fibromyalgia and Mast Cell Activation Syndrome, MACS. All going hand in hand with my original M.E. diagnosis.

No wonder I'm in a nursing home.

There are so many unknowns.

I would guess that this is not an unusual, if under-diagnosed combination, as similar autoimmune conditions often have similar complications. I worry that other people will unknowingly sensitize their mast cells whilst undergoing treatments for M.E. and Lyme.

I'm also wondering if the MCAS actually cancels out or explains the fibromyalgia??

I'm still waiting to Skype the Allergy specialist. Well waiting for my Mum to have a Skype appointment on my behalf.  Mum is seeing my Lyme doctor on Friday to discuss my difficulty with antibiotics (it's my day off today, I literally cannot think while on them).

I don't know what I'm going to do, what the priority is, kill Lyme or live with worsening MCAS or if my mast cells will stabilize after Lyme treatment or if I'm playing with fire and making the whole shebang worse.

Modern medicine is great but oh so very limited.

In the meantime, I've changed how I view my symptoms, I'm more in tune with what helps and what hurts instantly. I'm on the lookout for triggers new and developing. And trying to de-stress as much as possible.


Some links:

Borrelia Burgdorferi Spirochetes Induce Mast Cell Activation and Cytokine Release


Mast Cell Basics:

I love this ladies positive blog, though the word epi pen scares me. (Do I need one?)

Cort Johnson's take on mast cells and me/cfs:
Fibromyalgia Trial Shows Promise…For Chronic Fatigue Syndrome? Mast Cells and Ketiotifen in FM and ME/CFS


Mast cells and collagen behaving badly: really good info here from a lady with M.E. and MCAS and Ehlers-Danlos Syndrome.

This one is also a good read:


That is all I'm well enough to write at the moment, sorry if I don't respond to comments, using my phone makes me, you guessed it, degranulate or something like that.