* 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

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/#!po=0.0686813

Mast Cell Basics:
http://mastcellaware.com/about.html

I love this ladies positive blog, though the word epi pen scares me. (Do I need one?)
http://thealmostdaughter.wordpress.com/category/living-with-mast-cell-disease/

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

http://phoenixrising.me/archives/13083

Mast cells and collagen behaving badly: really good info here from a lady with M.E. and MCAS and Ehlers-Danlos Syndrome.
http://mastcellblog.wordpress.com/2013/11/12/canary/

This one is also a good read:
http://mastcellblog.wordpress.com/2013/11/23/canary2/

*******

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.

18 comments:

  1. Oh darling it's so good to see you pop your head up even if it's for such awful news.

    Although answers are weirdly gratifying for us I suspect these contrary ones aren't for you.

    You have me wondering about myself and MCAS... I have a lot of those symptoms.

    I will have to explore it more.

    Thank you for sharing.

    Love you so much.
    Miss you dearly xoxo

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    1. Thanks for your comment Marzi. You were one of the people I was thinking of when I wrote that post. Its frustrating that there are so many symptoms to try and figure out. Xo much love to you.

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  2. Oh God, how dreadful, Sarah - my heart goes out to you. I will pray that you recover soon and your pain goes away, God bless you and help you in this hugely difficult time in you life. Carmel

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    1. Thanks Carmel, I'm very touched to be in your prayers. Xo

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  3. Hi Sarah what a lousy load of excreta has been dumped on you lately! Probably deer excreta. I'm so sorry to hear things are going so badly. I recently started blogging again (after a breakup) and it's the first time I have done the rounds to catch up with everyone I used to read all the time. I wish there was something I could do to help. I get cold and exercise induced urticaria and asthma too and when I lived in the US it was very bad in winter. Now I live in the tropics so cold isn't an issue. I think it's great that you are logically evaluating the stuff that is happening and the things that the docs are saying. I hope they listen to you!!! best wishes always!

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    1. Yes I think it was deer excreta, probably direct karmic retribution for enjoying veal!

      Hope you enjoy that tropical island, though I know pain in paradise is still pain.

      Xo

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  4. Hang in there, Sarah. Your blog gave me something to think about for my family member- thank you.
    D

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    1. Thats great, Im glad it was food for thought. Im hanging in here and feeling a bit better. :)

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  5. I have been struggling through similar things. May I ask you some questions? How old are you? Did you have a complete autoimmune work-up, i.e. ANA, Sed-rate, CRP, C2-C4? Have you had "mast-cell-like" symptoms before your potential Lyme infection? How was the MC problem diagnosed? Did you have checks for histamine and serotonin? If so, have you had a biopsy to rule out mastocytosis? Have you had tests for 24 hour HIAA urine levels and chromogranin A for Carcinoid? Catecholamines for Pheochromocytoma? Cortisol for Cushings and Addisons? How often and frequent did you receive ABs for Lyme?

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    1. I imagine you've moved on since it took me so long to reply! Thanks for reading though :)

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  6. I have Lyme and being treated successfully and then wallop get hit with what I think is mast cell activation. Your links very, very helpful. I am hoping you are making progress and recover your full health.

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    1. Hey, it's a rough ride isn't it. I had to stop all lyme treatments before I could start to recover. And also didn't tolerate most mast cell treatment.

      I concentrate on avoiding triggers, relaxing , pacing and sleeping...

      And gentle movement.

      Good luck on your wellness journey.
      Xx

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  7. I love your sense of humour! Best Wishes for healing and recovery, Ron

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  8. Hi Sarah!

    Great blog! I wish you a great recovery!

    May I ask you how are you meanwhile?

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    1. Hi thanks, glad you liked it.

      I'm still in a nursing home and bedbound but getting better slowly with a lot less pain and neuro symptoms.

      Which I put down to listening to my body, cutting out bad foods and meds (eg egg yolks were bad for me!) , resting, meditating and a very low impact exercise stretch program with my exercise physiologist (following the Nancy Klimas protocol more or less)

      Hopefully I continue this way.

      :)

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  9. Awesome Blog post! I have been trying to figure out what the heck is going on, and my POTS dr just said I tested high for histamines...She isn't a lyme specialist and I got that diagnosis less than a year ago tho my bullseye rash was in 08. So she didn't tell me that Lyme causes MCAD...what you said about the antibiotics making it worse totally helps me in my research because I'm only doing herbals and antimicrobials (Cowden Protocol) because I know that my body doesn't do well on antibiotics...but I haven't been improving. Wondering if the MCAD is keeping the inflammation so high that my body's resources are depleted before even getting to the "killing lyme" stage. At any rate...love your sense of humor..totally matches mine. ; ) and just so you know, you info has helped me know where to research next! My POTS dr did recommend Z/Z and Cromolyn Sodium after I do an elimination diet and suggested a Ketogenic diet which is also recommended for Lyme. Keep fighting! I am not completely bed bound, but close so your strength is inspirational! Sending hugs from SoCal!

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    1. Hi Dani, it is do confusing isn't it!?

      I've found I don't tolerate the mast cell meds and am trying to get those over reactive cells to calm down by doing lots of relaxing and slowly nudging up my various thresholds (food, noise, exercise, stress). I definitely can't tolerate anything for Lyme at the moment, my mcs is bad, so I'm just ignoring that side of things- to reassess at a later date.

      There is some research that points to sensitised nociceptor s in our nervous system - which would be a mast cell trigger too.

      Just keep listening to your body...it's all we can do.

      And relax as much as possible to chill out all those buggers.

      Thanks for your comment, I'm so glad you found my blog a little useful.

      Xoxo

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