* 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. :(

Thursday, February 16, 2012

M.E. Myself and Saline



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 nice to have you back" says Mum.  

She's laying on the double bed next to me balancing a cup of tea and watching me as I eat dinner.  

I haven't been away anywhere but I know what she means.  I've been incommunicado, so ill that every movement felt like death and I was barely able to respond to questions let alone chat.  

I had a terrifying slow and steady health decline which started in December and stretched well into January.  Well it would have been terrifying if I had had the energy to notice. I was like the frog in the boiling water, it snuck up on me and by the time I realised it, I couldn't help myself.  

I wanted to reach out to friends to say good bye, not because I thought I was dying, but because I was slipping further and further away.  However it was too late,  I was beyond it.   I could barely hold a complete thought in my head, my speaking was slow and slurred and processing information or even simple decisions was far beyond my mental scope.  

I could reach out on facebook, occasionally but that was about it.  And while I love my facebook friends and supporters in a way that only the bedridden will probably ever understand, it's just not the same.

It's really hard to write about this, it's upsetting for me to relive the last few months especially since there is no guarantee that I won't end up there again.  Lost in pain, in  Nowheresville.  

So I’ve been putting it off.

But regardless, I need to share my experience and let you know what has helped me in the hope that it will help others.

The last few weeks have been better and I am making headway again. I have absolutely no doubt as to why I am improving because the effects were immediate.

I am getting regular 1L IV infusions of saline three times a week.  This is a treatment that has been around, but not around for a long time.  No doctors that I know of in Australia would suggest it. But that's not surprising when you consider that most doctors don't know much about M.E. and POTS*   and they only have a 10 minute slot to see patients.

I want everyone to have access to saline IV's.  I can't see why not, the risks are minimal.  A one litre bag of saline costs about $5-6 and can be prescribed by a regular GP.  My saline doctor, Dr S, bulk bills the whole thing and it doesn’t cost me a cent.  It's the only thing I know is definitely working.

The reason I think it works is because my overall blood volume is low despite drinking lots of water, salt and electrolytes.  Studies** show that cerebral blood flow is low in people with M.E. so I quite literally wasn’t getting enough blood flow to my brain.  

The saline tops up the low blood volume and bang I can think again. I’m back. 

This is why I think it works, it seems simple to me and I don't understand why it's not a mainstream treatment.  

Of course I'm a yachtie/sailor/cook not a doctor or medical researcher, it's probably a little more complicated than that.

Whatever the reason, it’s had a huge impact on me.  I am so thankful that Mum can actually sit on the bed and talk to me for 10 - 15 minutes, thankful that I can handle answering the phone occasionally, catching up on emails and responding to text messages. Thankful that I can even write this blog. 

Soon I hope to be well enough to see some friends.  In real life, for the first time since October last year.

I know if I stop getting saline the effects will wear off and that scares me but I have no intention of stopping, it’s my maintenance treatment.  

I'm a saline junkie, so what. 

Without it, I really don’t know what would have happened to me.   

I think everyone deserves to have saline IV's as an option.

Some people have dialysis. I have saline.  

It's no big deal. 

Unless I don't get it.



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* (Postural orthostatic tachycardia syndrome is one symptom of ME, basically it means whenever I sit up, stand or walk my heart beats ridiculously fast, and this is one of the things that makes me ill).

** Numerous papers document abnormal biological responses to exertion, such as loss of the invigorating effects of exercise [20], decreased pain threshold [47–49], decreased cerebral oxygen and blood volume/flow [50–53

(taken from the International Consensus Criteria definition of M.E. – You'll find this paragraph on the seventh page, right up the top.)

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p.s.

I am frantically writing (while still resting and pacing) more details about the process I went through to get saline & links to helpful info and will post that next. 

 In the meantime if you are trying to get your doctor to agree to trying saline IV's.  Why not talk to them about a two week trial of saline 3 times a week.  

You'll both know by the end of two weeks whether it's for you or not.

None of the above is meant to be taken as medical advice, I am not a doctor and everybody's body and health is different.   I hope though, that it gives you some other avenues to explore with the supervision of your doctor.