* 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.



************************

* (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.)

*************************
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.


11 comments:

  1. Hi, Sarah -

    I'm so thrilled to hear that saline IV are helping you so much! They are becoming a more common treatment here in the US, at least among the top CFS experts. Dr. Rowe and Dr. Bell pioneered them (here is DR. Bell's unofficial write-up: http://www.davidsbell.com/LynNewsV3N2.htm). More recently, Dr. Rowe has been prescribing them for many of his adolescent patients.

    For many kids and teens, they make a huge difference, just as you've described here. One 16-yr old boy here in our town is able to go to school for 2 days after his saline IV - a really big deal for him! Another teen girl nearby who has been housebound for many years is doing much better.

    Typically, there are prescribed just once a week, though that teen girl I just mentioned gets 2 per week. I'd never heard of 3 IVs a week - make sure you understand the risks of getting stuck so many times (or do you have a PICC line?).

    My own 17-yo son has been getting 2 liters of saline, once a week, but unfortunately, it isn't doing much for him. I suspect that's because right now, his main problem is his Lyme treatment, not his OI.

    Anyway, sorry for so much babbling! It is GREAT that you are experiencing such improvement from something so simple. BTW, you are right - the IVs are correcting (temporarily) the low blood volume that is such a significant part of ME/CFS/OI.

    I hope this good period continues for you - enjoy it!! Welcome back!!

    Sue

    Live with CFS

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    1. Hi Sue,

      Thanks for your wonderful and informative comment. I really found your blog and info on orthostatic intolerance instrumental in getting the motivation and information to follow up this treatment.

      I don't have a PICC line and am looking at other options as I know vein collapse is a potential (probably inevitable) problem with getting so many IV's regularly. I am hoping to get subcutaneous infusions, it seems like the less invasive option. It's commonly given to older patients who have bad veins and, weirdly, to cats. I'll write what we've found so far in the next post which I am still editing.

      I ended up on 3 infusions a week because my worsening in symptoms, between IV's was, so very evident. Mum couldn't bear to watch it (and I really didn't like it either). The difference was very dramatic and the positive effects have been amazing for my OI and neurological symptoms. While I am still very ill at least I'm here. It is good to be back.

      Cheers Sarah

      ps there was actually a show on Today Tonight here in OZ about Lyme disease, it seems that the local media is starting to recognise that it is in Australia too.

      I'm so sorry that Jaime is struggling with this at the moment. xx

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  2. hey sarah just stumbled on ur blog and i cant write much today as when i am tired the laptop does my head in.i have had cfs for 12 years and i have been where u are many many times...its so hard not to be angry and frustrated and of course emotional stress is the worst thing for us so its very hard.not that its relevant really but i am 49 and gay but i am blessed to have a partner of 15 years who has stuck by me and an 8 yr old son by her of course :)he is my world and keeps me going.about a year and a half ago i was in such a big hole and was desperate i had lost all hope and just had to find something new to try...i think some angel sent me a local kinesiologist called Mel who is now my angel on earth she is so much more than her title she is part priest for my confessions part shrink part life coach but most of all a healer...the last 6 months have been the best of my 12 years and its because of a mental shift.
    I remember a friend in the uk who i have never met give the advice when i was frustrated...i told her i dont understand as i try so hard to get well..she said thats the problem....i didnt understand for a while but now i do.I had to finally accept my illness..it is what it is kind of deal...that sounds small but it took a weight off me...i stopped wasting my energy getting mad etc...well most of the time...and of course we all have differant symptoms we have to deal with and work out what helps us but the mental shift has really helped me...i am not explaining very well and have to get off as i am tired so its not good for my brain but i just wanted to say...hang in there ....just allow yourself to just be... a better day is coming..dont torture yourself with what ifs and whys it will make u crazy....i wish you well...hope this didnt sound condesending i just know what a differance it made for me...acceptance that my old life is gone and i can make the best of what is my life now....be well...andy :)

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    1. Hi Andy,

      I'm glad you found and like my blog :)

      I think one of the most heartbreaking things about writing about how bad it can get is that I know I only saw the tip of the iceberg and that there are lot of people enduring the same and worse symptoms quietly isolated around the world. That really gets to me and can be quite overwhelming. I'm so sorry that you have gone and are going through this as well.

      Wonderful that you found some wise friends to help you cope emotionally. It's so important.

      Strangely, one of the upsides, is that I've 'met' (on the internet) so many inspiring people (and children) who are living with incredible grace through prolonged physical suffering. It does give me the strength and the 'come on if they can do it, so can you' mentality to survive this.

      Thanks for your wise words on acceptance. I agree it's so very necessary to accept our new lives. It's not giving up, it's about releasing responsibility for what we have no control over, and moving on. :)

      Cheers Sarah

      Ps good luck with the Doc

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  3. oh btw thanks for the info on the saline its very interesting and i will talk to my doctor about it.....andy

    ReplyDelete
  4. Sarah,

    It's always so thrilling to hear of a fellow ME sufferer's discovery of a treatment that so drastically relieves their symptoms. Congratulations! To go from where you were before (I had no idea you'd deteriorated so much -- you are so resilient and stoic)to the life you now have must be blissful. Thank you for sharing this with us -- it is a lesson in hope. Who would think something as simple as a saline drip could have make such a drastic difference to someone so ill that they couldn't move. There IS hope for us. And I will definitely be asking my doctor about it, my salt levels are often low, ended up in hospital once on the verge of a coma because they had fallen so low. (And unlike many synthetic drugs, I can't imagine that tolerance build-up would be a problem.)

    I hope you blissfully enjoy all the things this treatment now permits you to once again engage in. I am really so happy for you, I think we all are.

    PS. I've always thought that you seem to have mastered that tricky balance between acceptance of ME (ie.acceptance of the present moment with peace and even gratefulness/happiness) AND an active desire for hope of future improvement of your present circumstances.

    Love Lilith XOXO

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    1. HI Lilith,

      Aww what a beautiful comment. It's funny I was just saying to Mum the other day how hard it is to balance acceptance of life and illness with hope and desire for more. Both emotions bring me such joy, but only in moderation, there lies the tricky bit.

      I really didn't know I was so bad, it struck me most as I got better. I could move, but it didn't feel good at all. I think I sort of went into semi-hibernation.

      eg. I always had my eyes covered and struggled with motion at the doctors so it wasn't until the fourth or fifth time when we upped the frequency, that I realised I didn't know the way to the IV room and was able to pay attention. Now I chat to the nurses on the way in and out (from the wheelchair, if the driver slows down). I even have a bit of fun, driving myself, using the brakes, on the downhill slope in the car park.

      I hope you can try the saline and that it has the same effects. Fingers crossed for you chica.

      xxxxxxx
      Sarah

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  5. HI Sarah
    I've been thinking of you on and off all summer as you were so quiet and was so concerned you were incommunicado because of your health which evidently you were. Soooooo glad the IVs have given you some respite. Please send hugs to your mum from me too, I can only imagine how tough it's been for her seeing you this ill. Hope more improvement comes very very soon. xoxo

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    1. Thanks Annie,

      I've been following Harriets great progress with the florinef and am so very happy for you both. :) It seems to me that the POTS side of things is very treatable but it just takes a while because it's not a very well known symptom.

      In some ways the last few months were harder on Mum than me because she had to deal with it, whereas I just wasn't really there. It's nice to be back. Thanks for the hugs xx

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  6. wow! glad you found something that helps :) I'm on my way to lyme testing....fun!

    Sipora

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    1. Good luck with the lyme testing... or bad luck? That's a bit of a scary one isn't it.
      Cheers
      ps. I loved the Essential self, post.

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