* 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. :(

Tuesday, January 26, 2016

Rising to the who?

Rising to the who?

I'm moving again.  Back to my regular nursing home - the one I had to leave for renovations six months ago, as my noise and chemical sensitivities would've made me a lot sicker if I'd stayed.

It's been a nice stay here in a wee respite room, in a nice supportive home, on a quiet ward with many kind nurses and a lovely patch of green outside my door - that I could oogle on precious cloudy days.   Trust me - grass becomes something to oogle after years of no grass.

There was a woman with ME here before me, who passed away, from an unrelated illness just after I arrived.  I hadn't known she was sick like that, so I was sad to miss her, as she paved the way for me here.  The closest we got was sharing an ambulance, she caught it up to hospital, I caught it down to the home.

The ambulance crew were completely mind-boggled by this weird disease they'd only just heard of and met twice in one day.  I'd love to get the same crew back up.

It's been a good break though, I have made lots of gentle progress.   While here, I started counselling sessions by skype with an ME counsellor, exercises by skype with an exercise physiologist (not GET) and have had weekly osteo sessions for a while now, which is helping sensory pain.

Then, there was even a student nurse who asked for my number.

Yes Internet, I'm bragging - I've still got it!

 (I won't tell you how dark it is in my room or that the same student hit on all the single nurses as well ...cast your net wide my friend).

And now, as I get my last bits and bobs ready for the ambulance ride back, I'm trying not to worry or be nervous.

My body gives me away though, my spine pain and nerves have ratcheted up a little - so this afternoon, I have some serious relaxation techniques in mind to practice.  

I know tomorrow's ambulance ride will hurt, and that this extra little bit of pain that's happening now in anticipation, is just my body rising to the occasion - and that according to my ME counsellor - is okay.

She tells me, not all stress is bad, and that there was a study that showed,  those who believe their stress is good, eg exciting or energising and useful, have better health outcomes than those who always view stress as negative and, well - stressful.

Even with all the usual ME caveats - I find that, somehow, this helps.

It's one of those tricky mind squiggles - if I believe my stress symptoms are ok or even good - then they becomes less stressful - which is helpful- but this only works if I'm not aiming for less stress...so I need to welcome and feel the stress as it is...just be....and all that.

Slippery little mind sucker!

I think I'll try some distraction therapy too.

Maybe write a blog about it -

Hi there.


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.

Friday, August 31, 2012

Why PHANU need our support and reasons to hope for ME/CFS/Fibro:

It's been a while since my last blog, over a month I think.

I've been doing a lot of 'extreme resting' since my health has been worse than the usual.  Despite that lots has happened, there has been doctors appointments, a mould invasion and family dramas to deal with, but all that will have to wait for now.  I have something to share that I think is important, maybe not as entertaining as LargeDad's take on brazilian waxing, but, well, important.

There has been some great research coming out of PHANU, Population Health and Neuroimmunology Unit on the Gold Coast, Australia, (basically an ME/CFS lab) lead by Dr Marshall-Gradisnik and Dr Staines.

Dr Marshall-Gradisnik and her team have set a cracking pace, doing 15 papers on ME/CFS in the last two years.  They are now busy working on biomarkers, organising rituximab trials, slaying the 'graded exercise theory' myth and setting up a diagnostic lab.  PHANU certainly have a lot going on. 

One of their key areas of interest is testing Dr Staines's hypothesis on what causes ME/CFS.    His theory, while very promising, doesn’t seem to be very well known by the me/cfs community, so I’m hoping that by getting the word out I can turn some attention to his work and the recent urgent call for funds. 


My interest in Donald Staines’s work started a few months ago, when he kindly took some time to talk to my mum about PHANU, their ME/CFS research and hopes for the future.  After talking to Dr Staines,  she came into my room, her face beaming and full of hope.  Anyone who can make Mum smile like that about ME/CFS has got my attention. 

So what did he say?

He said, that he thinks ME/CFS is a vasoactive neuropeptide autoimmune disease. (I know...a what?)

A peptide autoimmune disease that you may of heard of is Diabetes Type 1.  Peptides are little chains of amino acids that are in everything, blood, organs your brain etc.  They have only started to be understood in the last 15-30 years and are responsible for regulating many systems in the body, including the immune system.

What gives me hope, is that, Staines is interested in a few specific types,

-           VIP's  vasoactive intestinal peptides, named such because they were found in the intestine first, they get around everywhere.

-           PACAP’s, These ones have a lot to do with a vital messenger, AC (Adenylate cyclase) which is involved with cAMP and mitochondrial function.

 When I look up the lists of things these little buggers are responsible for, well, the list correlates with a lot of my weird and wacky ME symptoms.  Staines thinks that these VN’s may be what’s missing, low or damaged in people with ME/CFS/FIBRO possibly due to an attack or dysregulation of the immune system.   

Staines has written a book on the subject called ‘Chronic Fatigue Syndromes and Vasoactive Neuropeptide autoimmunity’.  By Donald R. Staines. 2005.  It's a simplified version of some pretty complex stuff but it's still very technical.  (Ie intense brain fog alert).

 One of the potential therapies that is mentioned in this book, is b-cell depletors, eg. Rituximab, which fits in with the positive Norwegian trial results. 

So, in the short term , I hope that Staines's theory gets a chance to be proven (or disproven).

And in the long term, I hope, that they can figure out the missing peptide/ingredient and one day, treat us, a bit like insulin for diabetics.

But research into this, is being held up by the need for a new flow cytometer, a machine that counts tiny things, like peptides, in blood. 

This is where the Alison Hunter Memorial Foundation, have really risen to the task and are asking for donations specifically for the new cytometer. 

Already, they have raised $24 000 of the $200 000 needed.

The AHMF was set up in 1998 by a Christine Hunter, who lost her 19 year old daughter, Alison to ME/CFS after a courageous ten year battle.  In the years since, Christine has dedicated herself to raising funds to support promising biomedical research into ME/CFS.  An inspiring woman, to say the least.

Donations for the flow cytometer can be made on their donate page by printing out the form and posting or faxing it to the AHMF.  

Or online in the UK:

Donate now at Invest in ME, a UK based charity, dedicated to funding biomedical research into ME, using their online button.

Or online in Australia:

Donate now on the Australian site for ME/CFS (Vic/Tas/NT).  Simply follow the link to their homepage and press the red donate button, then tag your donation 'flow cytometer'. 100% of your donation is then guaranteed to go directly to the flow cytometer.  Any problems, phone 03 9791 3100 or email admin@mecfs-vic.org.au. Thanks to Alison for making this possible. 

So there are now three charities around the world working together to raise funds for this worthy cause, let's hope their teamwork pays off.  

In the meantime, while we wait for (and make our own) donations,  it’s nice to know that there are people quietly and persistently doing decent research into this disease.

I'd just like to add, that any mistakes about the above, specifically about Dr Don Staines's theory are my fault.  I hope I haven't confused any of the details by oversimplifying what I've understood in his book but I am very ill at the moment and don't come from a medical background. 


For More Information:

About PHANU:

1) ‘Phanu Rising : Australian Chronic Fatigue Syndrome Research Lab Making Waves: Pt 1 ‘

2) ‘Phanu rising II” Dr Marshall-Gradisnik talk on Rituximab, Biomarkers and Chronic Fatigues Syndrome.


About Dr Staines’s theory:

1) His book, ‘Chronic Fatigue Syndromes and Vasoactive Neuropeptide autoimmunity’.  By Donald R. Staines. 2005

2) Or in his online hypothesis:
‘Is chronic fatigue syndrome an autoimmune disorder of endogenous neuropeptiedes, exogenous infection.

(Thanks to Rachel.M. for this link.)


About the Alison Hunter Memorial Foundation: 
Fundraising for Flow Cytometer

Alison Hunter Memorial Foundation announces Fundraising for Flow Cytometer Cost 
Funds raised to date

Aus $24,000

Griffith University
 School of Medical Science

Griffith Health Institute

 Population Health and Neuroimmunology Unit (PHANU)

Steering Committee
 Chair Ross Humphreys

Professor Sonya Marshall Gradisnik PhD

Associate Professor (Adjunct) Don Staines MBBS MPH

Professor (Adjunct) Daniel Peterson MD

Christine Hunter AM

The focus of PHANU is to investigate the pathomechanism of myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS) as well as to develop novel biomarkers for the early diagnosis of the illness.

Under the leadership of Professors Marshall-Gradisnik and Staines, PHANU 
works in close collaboration with Daniel Peterson MD Chief Investigator/Clinician of Simmaron Neuroimmune Research Foundation Nevada USA.

PHANU is seeking to obtain a new flow cytometer to continue their immunological and genetic investigations. 

This equipment upgrade is critical for their ongoing ME/CFS research programme examining spinal fluid and blood and will allow more advanced analyisis of possible pathomechanisms.

A Donation Form can be accessed at www.ahmf.org via Donation tab.

Donations can be posted to

Alison Hunter Memorial Foundation
PO BOX 6132
North Sydney 
NSW 2059


or alternatively faxed to +61 2 9958 6285 

Your help to fast track this purchase would be greatly appreciated.

Chris Hunter AM

About Alison Hunter:

Alison Hunter's beautiful and poignant story - Forget Me Not - can be found in the journal of Invest in ME, volume 3, issue 1 (page 11)

And also on the AHMF website

 About Invest in ME (IiME): 

IiME is an independent UK charity which campaigns for bio-medical research into Myalgic Encephalomyelitis.  Apart from raising funds, they have done many other wonderful things, like founding the European ME Alliance and hosting an annual conference with the worlds top ME/CFS researchers. The results from the 2012 conference can be found here.

About ME/CFS Australia (Victoria):

ME/CFS Australia (Victoria) is a not for profit charitable organisation dedicated to providing information, support and advocacy for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome community in Victoria, Tasmania and the Northern Territory.  They have some handy resources on their website, including self-management courses and fact sheets for friends, family and doctors. 


Saturday, July 7, 2012

Speed, setting and frequency does matter – update on saline IV’s

2014 Update:  I became unable to tolerate saline, either by picc line, cannula or port - I'm pretty sure I developed a mast cell allergy to the plastic in the bag/ giving set.  I get a massive headache and symptoms of mast cell degranulation when trying to have more than one saline infusion a month.   So no more saline for me...a real shame because it still gave me the other improvements.  

If you are prone to developing intolerances, watch out for any worsening in symptoms .


It’s been about nine months since my first saline IV and I’ve learnt a few things along the way. Fun things, like Mum's reaction to blood.  And three very important things, that I need to maximise the benefit from saline IVs.  

 Speed – 1 litre over 1hour.  In other words, gravity fed with the inline valve wide open.  Slow IV’s do not have the same effects.

 Setting/environment – a quiet dark room. It's very important to minimise noise, light and movement as they all trigger a worsening of symptoms which reduces the efficacy of the saline treatment.     

 Frequency – daily.  I now have one litre of IV every morning and experience some relief every day.  As soon as I miss one, I get worse. 

(for information on how and why I started on saline you can learn more here Me, Myself and Saline and here The Nitty Gritty On Saline IV's and POTS)

It was a long process of trial and error to learn what my body needs in terms of saline.  I don't know why or how these things do or don't work, all I can do is share my experience and hope it helps someone else. 

I've broken it up into subheadings to try and make it easier to read. 

1. Subcutaneous saline infusions - didn't help.
2. Frequency - A longer term solution  – Port a cath installation
3. Speed matters - A slow  IV didn’t work.
4.  Links - Medscape article.

1. Subcutaneous saline infusions - didn’t help.

After getting 3x 1L IV’s a week for months my veins were getting pretty scarred and scratchy so I started looking for other ways to get saline in. I started with subcutaneous saline infusions.  This is where the saline is inserted under the skin into your fat layer, making a “saline baby”, and from there slowly absorbed away into the bloodstream via capillaries.   

It took a while, and there were a few tricks to getting the subcut going right. But even once I had got the saline going in 500mls a day or more, it still didn’t have the same positive effects as the IV’s.  In fact for the whole two months we tried this I kept up with the IV’s.

So for me, subcutaneous saline didn’t work to alleviate any symptoms,  and I’ve since spoken to other severe ME patients who have also had the same reaction.

2. Frequency - A longer term solution  – Port a cath installation

I was so frustrated that the subcut saline didn’t work.  I’d really hoped that this would be a good long term solution around the vein damage. I was scared my veins would collapse and I’d have to stop getting the IV’s.

Just as that started to happen (one vein did collapse) the cardiologist and endocrinologist  at our local hospital agreed to insert a port a cath into my chest.

A port a cath
 is basically a little pincushion installed just under the skin in your chest with a line straight to a blood vessel.   

Port a cath: (the actual drum is about the size of a 10 cent piece). 

Now I can administer saline myself and I only see a nurse once a week, who comes to my home, to change the needle into the port a cath.

Every morning I wake up feeling a bit Dracula-ish, nauseous, headachey, brain foggy and ropey.  Then Mum comes in, sets up the saline IV, wipes the end of the port with an alcho- wipe, does a quick 10ml flush with a syringe and then connects the IV.  Twenty minutes later and I start to feel human again.  How human I get, depends on how bad I was to start with, but it’s always a little better.  

So I know that frequency matters for me, it helps every morning.  For some reason it seems to help more in the morning than in the afternoon.

Being treated at home in my own bed is so much better than going to the doctors.  By removing the sensory strain of travel and upping the IV frequency I've experienced small improvements.  I’ve been able to do more things for myself.  Like listen to music have short conversations and sit up a little.  I’m now sitting up for 30 minutes a day in bed, most days.  I still have backward slides and crashes but overall the trend seems to be going slowly upwards.  (incredibly slowly).

Another positive, that Mum loves, about the port a cath, is that there is no blood.

3. Speed Matters – A slow IV didn’t help.

Last week I unwittingly tested the ‘speed matters’ theory.  When the nurse changed the Port’s needle, it went in at a bit of a funny angle, into the side of the drum and must have been a little obstructed because the saline ran very slowly.  Four and a half hours later I finally got all the saline in, but didn’t experience the usual positive effect from it.  

One litre in one hour, gravity fed, seems to give the best result.  

4. Link to Medscape article:

After agreeing to administer saline for me, one of my doctors went and did her own research and found a medscape article referencing saline therapy.  It mentions one of Dr Bell’s patients,  a woman who experienced measurable improvements after being given daily saline IV’s for 417 days.

You have to sign into the Medscape site to read this, but it is available as a consumer, you don’t have to be a doctor to access it or pay anything. 

An extract:  (Found in the article under the heading Treatment, and subheading, Medications for Orthostatic Intolerance)

"A case report in the literature cites improved performance during graded exercise testing in a woman with CFS after daily treatment with 1L of 0.9% saline via a central venous line over a period of 417 days. Improvement in a variety of cardiopulmonary measures as well as subjective report by the study participant of improved activity tolerance, reduced muscle fatigue and pain, and improved orthostatic tolerance were cited."

In my opinion, why and how saline IV’s work isn’t important but what does matter is how saline IV’s are administered.   

Speed, Setting and Frequency.