* 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. :(

Friday, March 2, 2012

The Nitty Gritty on Saline, IV’s, POTS & ME.

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 .

*****


I spoke about the overall improvements in my health and my experience with saline IV's previously in this post.   Now I hope to give you some background knowledge and the tools to pursue this as a treatment option.  


Most people with M.E. have low blood volume and POTS (postural orthostatic tachycardia syndrome). 

The POTS is what makes it difficult to maintain an upright or even semi upright position.  This is also known as orthostatic intolerance.  If you have POTS then your heartrate jumps more than 30 beats/min when you stand up within 10minutes of standing (for me it happens straight away and it’s always more than a 30beat jump). 

People with POTS also suffer from low cerebral blood flow, especially when standing or sitting but can also be affected while laying down.  This may be due to the overall low blood volume.

By treating the POTS you can ease (and I’m hoping, eliminate?) a lot of the neurological and orthostatic symptoms of M.E.  

While there are lots of different treatments for POTs, I’m going to concentrate on saline therapy because it is what has helped me the most.

Saline IV's are not considered a standard treatment so, we discussed it with many doctors and specialists.  

We ran it past an endocrinologist (well my parents did, because I was too sick to leave the house).  She was very supportive of the saline therapy and, together with my GP, is helping me to sort out a way to get saline treatment at home through subcutaneous saline. 

And I’ve also spoken to a cardiologist who specializes in POTS (via a telehealth appointment). He is happy for me to continue with the saline treatment and has given me a new medication (Ivabradine) to try to as well.

So far so good, I haven't found any reason to not have saline and I know it’s making me better.  

So why isn't it an option for everyone?

I find it very frustrating that this is not standard practice for all patients suffering from severe ME and POTS.    My chest hurts (in a completely non-medical way) when I think about all the people suffering from this disease without this option.

In an effort to be helpful I might have gone a bit overboard.  This post seemed to grow and grow and grow as I wrote it.  I feel terrible that it's so long but I wanted to give as much useful information as possible.

So I’ve split it into sections to make it easier to read.  
                                        
1) The Good Stuff: My Symptoms Eased by Saline
2) How Long Does It Help For?
3) How I Got Saline IV’s
4) Print-outs for your Doctor about Saline, ME and POTS
5) What actually happens when I get an IV.
6) Long term Saline -Subcutaneous Saline Infusions at home.
7) Links


Please keep in mind that this is not medical advice, all medical decisions should be made under the supervision of a doctor. 


 ***

1) The Good Stuff: My Symptoms Eased by Saline:

The differences may seem tiny to the average person, but to me they are huge.  I am still very very fatigued, bedbound and sick especially with the immunological symptoms.  But even though I’m constantly tired, I’m here again and I feel like I’m in the right body.

·      Light and noise sensitivity, from an 8 to a 5. (if I manage to resist looking out the car window on the way home and frying my eyes).

·      Cognitive dysfunction/brain fog:  This is the most notable improvement in my opinion.  I can think again. I’m still limited by severe fatigue but the difference is amazing.  I can read books again whereas before just looking at pictures made me ill.

·      General body malaise: Ropey want to be out of my body feeling.  This has improved from an 8 to 0 but occasionally still a 2 or 3.  This is one of the worst symptoms, if I score high on this one, it’s a bad day.

·       Vertigo: from a bed that thought it was a boat and fake earthquake tremors (thank goodness I don't live in Christchurch) to nothing.  Just with the occasional 1/10 fake tremor.

·      POTS: my POTS is extreme.  My heart rate usually jumps 50-60 beats when I stand up, sometimes into the 200’s.  It’s still a problem, but is a bit better after saline, down by about 10-30 hb/min overall.  

·      Cold feet and calves: I used to have freezing painfully cold feet (even on 30*C days) and the coldness had moved up past my calves and was about mid thigh.  That was a bit scary having legs that were cold to touch (and I was doing occasional leg lifts for circulation). Now I can get away with no socks most of the time and my legs are no longer much colder than the rest of my body. 

·      PENE *:  Post Exertional Neuroimmune Exhaustion, I often think of this as payback symptoms.  My shower payback is notably reduced. I think this has something to the reduction in POTS taking a lot of strain off my body.

“Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”  NB: PENE is a required feature of an M.E diagnosis.

·      Nausea: I experience a lot less nausea now, usually just an hour or so when I wake up or if I overdo it a little, rather than unrelenting constant nausea that could last for days.

·      Acne: my face exploded during my health decline, and is quite a bit better now (despite no change in chocolate consumption). A pleasant bonus.

·      Hair loss:  My hair was falling out all over the place and is now back to normal.

I’d like to point out that I have severe M.E, people with milder ME/POTS may find the improvements more subtle than I did.  

***



2) How Long Does It Help For?

Since blogging, tweeting and facebooking about my saline therapy I’ve noticed that many people have tried it at some stage and given up because the effects don’t last longer than 24-40 hrs. 

That’s why I go three times a week, every week. 


The positive effects for me are definitely accruing and I am making (and celebrating) tiny gains each week.   

The shower PENE payback went from lasting three days, to 1 ½ days, to just ½ a day and the last time I showered I only had a days exhaustion, no really nasty symptomatic payback.  So I am getting better and better each week. 

That said, I still go downhill on the weekends when I have three days between IV’s.  But I seem to drop back less each time.

Many people find saline IV’s a hard treatment to get regularly, with transport/time pressed GP’s and carers limitations all adding up to make it difficult to organise.

***



3) How I Got Saline IV’s

I really wish I could direct you to an official government clinical guideline for treating POTS in people with ME but I’ve not found one.

So here’s the story. 

We ‘discovered’ the positive effects of saline completely by accident.  I was getting Vit C IV’s (which I blogged about here) and noticed my heart rate improving as well as my overall alertness, immediately after the IV.  Sue Jackson, a fellow blogger, kindly pointed out that this immediate effect may be due to the saline boosting my blood volume.

My doctor (and even Large Dad) thought initially that it must be a placebo effect.  Mum and I were really surprised by the instant results of the IV’s and we didn’t think it was a placebo.   I mean placebo effects are something you expect to happen ...right? Eventually we managed to convince the doctor and Large Dad.  

Still getting 'just' saline wasn't simple.
  
The alternative health practitioners that are happy to administer the Vit C IV’s for a small fortune aren’t interested in the positive effects of $5-6 bags of saline. 

Funny that.



And to complicate the picture, the medical practice my usual doctor works at is incredibly busy, bright and crowded, so not ideal for M.E. and a slow IV. 

So we looked for other options and found another doctor willing to administer the IV’s somewhere much quieter where I could lay down and wait.  This was great and I started getting regular saline IV’s once a week. 

Then that doctor changed practices and quite suddenly I was without saline as the remaining doctor at that practice wasn’t willing to continue the treatment. 

He said that he was trying to build up his practice and he didn’t want patients like me, despite charging me $135 for the visit.  

Hmmm. 

I wasn’t worried at first because I hadn’t realised how much I needed the saline.  But then I slowly slid into a scary health decline.

We kept searching, talking to family and friends, looking for a quiet surgery.  Somewhere I could lay down in the waiting room (or even better still go straight through to a bed), a quiet nurses station with room for me and another doctor willing to administer the IV’s. 



By the time we found the doctor who currently administers my saline, I was pretty much living in perpetual brain fog, painful sensory overload and was, at times, very disorientated. 

It was a very low point in my health story, waiting to go in and see this doctor for the first time.  I can remember laying on a couch in the waiting room concentrating on breathing, meditating, soothing myself, because the sensory input around me was very overwhelming.  Just the noise of people around me flicking magazine pages was incredibly loud and painful.

The room was shaking and rocking slightly and the lights were intensely bright.  I had my eye mask, sunglasses and hat firmly jammed over my face.  Perfume and deodorant smells were really strong and chemically.  I was nauseous and every tiny movement made it worse.  I felt ropey, like every nerve was a little jangled and irritated.



Yet, I looked healthy.

It’s very daunting, having a body and brain that doesn’t work and knowing that you have one chance to say and do the right things in order to get the treatment you need.

 

Luckily the doctor could see I was struggling to be coherent and that I was in real physical distress.  It probably helped that Large Dad was there backing me up.

(Always take back up, it makes you look less like a crazy person, especially if like me, you haven’t washed your hair in quite a while.)




Large Dad and I took print outs explaining ME and POTs. The doctor listened patiently and asked what it was I wanted her to do. 

So I told her about the saline. 

‘Okay’ she said, ‘but what else?’

I think it was clear to her that I needed more than just saline and not being used to patients with M.E. she wanted to know about the next step to take.  (err so would I …).

I needed to get across the point that while I didn’t know what other options to try, I was absolutely sure that I needed saline now, as a medium to long term treatment.

So I asked her,

if you gave a healthy person saline every week for a year would it do any harm?

‘No, of course not’ was the answer.

That helped to put things in perspective.  Yes, I was asking for something a little unusual, but also extremely low risk and very accessible.

I started on one litre of saline a week but the effects only lasted 40 hours.  It was brutal having a taste of (relative) wellness and then losing it again, so we upped the frequency to three times a week.  Which is ideal for me.

I’m very lucky to have found such a perfect doctors surgery.   There is a little quiet dark room that is, as far as I can tell, only used by me.    And the nurses are lovely.

Basically it took a lot of perseverance, preparation, support and good luck to get sorted.

***




4) Print-outs for your Doctor about Saline, ME and POTS:

This is the most up to date and comprehensive definition of M.E. Agreed upon by 25 doctors and researchers from 12 different countries and published in 2011, it is based on clear biomedical research.

The section on PENE is especially useful if a doctor suggests exercise to help with the POTS symptoms.  Exercise is helpful for POTS but not at all for severe M.E.

I recommend using a highlighter to mark the relevant parts including references to low cerebral blood flow and low blood volume.



The folk at Vanderbilt University in the USA are studying people with POTS and CFS.  They are using saline IV's to treat the POTS symptoms and recording all sorts of physiological measurements to try and work out why the saline helps. 

One of the theories behind their research is, that the tachycardia and low blood volume are self perpetuating: 

" The investigators have documented abnormalities in volume regulation in POTS patients.  Hypovolemia* can contribute to sympathetic** activation and vice versa, sympathetic activation can contribute to hypovolemia.  Interrupting this vicious circle with acute saline infusion is the most effective treatment to improve symptoms in POTS patients. Not surprisingly many POTS patients followed by the investigators, and CFS patients followed by Dr. David Bell, are using saline pulse therapy as a way to alleviate symptoms"

*hypovolemia is simply low blood volume.
**sympathetic, this is the part of your nervous system that is part of the ‘fight or flight response’, in this context, it tells your heart to beat faster.  


***



5) What actually happens when I get an IV.

 The doctor inserts the IV needle and cannula then removes the needle, leaving in the cannula (just a thin tube). Runs the IV and leaves me with the nurses.

The nurses stick their heads in and check on me every now and again.  One thing they make sure of is that the cannula is situated correctly in the vein and that there is no fluid pooling in the tissue around it.

The effects are obvious very quickly, about halfway through I already feel a lot better.  It is quite dramatic.

It takes one hour for one litre of fluid to go in.

A pressure bandage afterwards helps reduce bruising. We use one arm for one week then swap. 

It can be bulk billed.

Sometimes I feel very alert straight away, other times I feel a bit dozy, sort of sleepy but I never feel that weird M.E. tired and wired after an IV.

***

Tips: for comfort when getting an IV

On the way there, in the car, you can minimize distress by laying down in the back seat (this is what I do, but it may not be the safest option in case of an accident).  Another option is to get your legs up by reclining the front seat fully and sitting on the backseat with your legs on the front seat.  That way you can wear a seat belt, as they are designed to be worn, but this also means your torso is vertical.  

An ambulance would be an ideal solution.  The problem with ambulances is that they like to go to hospitals.

All large medical centres are required to have a wheelchair somewhere on the premises.  If you ring ahead to check, your carer/driver can then go and get it and that way you can minimize walking. 

Also when you ring ahead explain that you need to lay down straight away upon arrival and ask if can you go through to the nurse station to a bed instead of staying in the waiting room.  If there isn't somewhere organised for you to lay down in straight away, then just lay on the floor, this is the quickest way to get help and attention. (as embarrassing as it is *blushes*).

Specify that you require the quietest, darkest place to lay.  This will need to be repeated many times.  Eventually all the staff will know you and get used to your needs.  



Don’t be afraid to ask for the music or TV to be turned off, while you are there.  Most people find it irritating anyway.

Wear a cap (to hide unwashed hair and to shield your eyes) and sunglasses, have an eyemask and earplugs handy. 

If you can stand noise, an audio book, music or guided meditation is good for distractions. Especially with noise cancelling headphones.

The saline is kept at room temperature, but that is still colder than your blood and if the medical centre is air-conditioned it can get very chilly during and IV. 

The room I go to is extremely cold  as it is very small with an air conditioner vent (and this may seem bit over the top) so I wear thermal fleece pants, woolen socks with sockette booties on top, a t-shirt, woolen jumper, fleece jacket and a snowboarding mitt on the IV hand.   All topped with my travel blanket.

Yes I do look ridiculous.

Since I live in a really warm climate, I also wear shorts on under the fleece pants so I don’t cook in the car drive to and from the doctors.

I take a neck cushion as well, in case I get caught without a pillow. 

The point is to be prepared and make it easy as possible for the nurses to look after you.

The nurses may get curious as to why you are there, what's the story with the sensory overloading and why you are getting saline. A couple of extra printouts can come in handy.

Occasional chocolates for the nurses and receptionists will also go a long way to making your visits more comfortable. 

***




6) Long term Saline -Subcutaneous Saline Infusions at home.

The most obvious worry about prolonged saline IV’s is vein collapse.

We looked at three options around vein damage:

a)  PICC line, a catheter line that goes into your arm vein and, almost all the way to your heart.  This is left in semi permanently and means you can do IV’s at home yourself with proper training.

I don’t want a PICC line because it seems like they usually get infected.  It’s just a matter of time and I don’t need that drama for my immune system.

b)   Implantable Port,   This seems like a great long term solution for people needing infusions, blood tests etc.   It is a bit like getting a pincushion installed just under the skin on your chest.

But it requires an operation to install it and I know from experience that even minor operations, anesthetic, me and M.E. do not mix. So a definite no for me.

c)   Subcutaneous infusions,  (a.k.a hypodermoclysis and sometimes referred to as simply clysis) were suggested to us by my Endocrinologist as a long term home saline solution.  They are infusions given slowly just under the skin in the fatty layer above the muscle.

I think this is the solution for me.

Subcutaneous infusions are commonly used in palliative care situations for the very elderly or very sick (err me?).

If you’ve ever had a B12 injection then you’ve already had a subcutaneous* injection.  A subcutaneous infusion is less invasive than that injection. 

(*correction: B12 injections are intramuscular - which is the next layer down after the subcutaneous fat layer).

A butterfly needle is inserted under the skin (often in the squishy part of your stomach skin) and fluid is very slowly dripped in at a rate of about 500ml/12 hrs.  This fluid apparently bulges a bit at the insertion site before it is absorbed away into the blood stream.

I understand that, the needle can stay in for a few days and you just connect/disconnect the saline as required.  So you can still be mobile, go the toilet, have a shower etc.  We will see.

I’m very excited by this option as I think it is a great at home solution.  Not only would it save my carers almost 10 hours a week in transport/doctors time but it would also save me from using precious energy getting to the doctors. 

So we are in the process of getting subcutaneous saline organized.  

My doctor and the nurse from Ozcare are doing a home visit to organise all the paperwork later this week.  It looks like it’s something I can learn how to do myself, from the nurses.  They set up the saline and insert the butterfly needle the first few times and then when I’m comfortable doing it myself I 'get' to do it.  

Luckily I’m pretty good with needles.  (Eek!)

I haven’t been able to find much information online about subcutaneous saline infusions, for people with M.E. or even just for people with  POTS.  Although it seems very common for people in palliative care and also for pets.

So I’m willing to be a guinea pig.  

Watch this space. J

*** 


7) More Links:

Hydration techniques:
A 15min youtube by a Dr Karnell. He talks about hydration for people in a hospice setting. He discusses pros and cons of IV's, oral hydration techniques and then at 9.33 minutes talks about the advantages of Clysis (subcutaneous infusions).  

Dermoclysis - Subcutaneous Hydration for the Remote Medic.  A brief practical description of applications for subcutaneous hydration with a photo.


A great website where a girl describes her experience organising and getting saline IV’s. She has a very comprehensive list of links to research and supporting documents for Saline IV's.

As well as that she has lots and lots of great information about POTS and the immune/neurological side of things. (I'm still getting my head around it but it looks to me like a lot of what she talks about is valid to M.E.)

Sue's blog is a fantastic place to start researching treatment options worth mentioning to your doctor.
If you type ‘saline’ into her search bar, her posts on it will come up as well.  

There are other treaments, as well as saline, to try when tackling the POTS symptoms and a good place to start is this list on the CFIDS site. 

Please bear in mind that this is not medical advice, all medical decisions should be made under the supervision of a doctor. 

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

It’s been such a long road to this point. I’ve been sick since May/June 2010 and am only just now getting the one treatment that I can definitely say helps.  

And we found it by accident.








21 comments:

  1. glad you are having some success. i was on saline for a few month but then started having an adverse reaction to it .. Dr David Bell talks about it on one of his Lyndonville blog posts somewhere. I'd really like to try again because the saline did really help me too ... but too scared to risk it I think haha

    ReplyDelete
    Replies
    1. Thanks for your comment Lee Lee, It is such a relief to find something that helps.

      I'd be really interested to hear more about your adverse reaction to the saline, when you feel up to it. What to watch out for and so forth.

      I know you've got a lot going on at the moment, your video blogs on the Change for ME, Australia facebook page are great. They have been really interesting and full of good info, you seem to be really well prepared for your hospital visit.

      Good luck for the rest of your stay.

      ( https://www.facebook.com/pages/Change-for-ME-Australia/363333707017853 )

      Delete
  2. GREAT post Sarah. I just love your writing style (ambulance, hospital = haha) Really interesting to read how it's all worked for you and I'm so impressed with your and your parents' perseverance and gentle persistence to get some good results. So thrilled for you that you can read now and I REALLY hope the gradual improvement continues. This blood volume thing certainly seems to be key. Hugs.

    ReplyDelete
    Replies
    1. Thanks Annie, I am so lucky to have my parents to persevere for me. I hope that this helps other people who don't have someone to look out for them. Amazing what a bit difference treating the blood volume/POTs makes and how long it takes to get sorted..I'm so glad Harriet is doing well with the florinef.

      :) xx

      Delete
  3. I have just had a Porta Cath inserted in my chest which is what you referred to as an option for IV fluids.
    It was done by an anaesthetist, in the sterile xray room.
    A regular IV cannula was put into my arm and then some slight sedation and pain relief was given to reduce the effect of the Local Anaesthetic that was given into the insicion sites. There are two. I had a PICC line put in 2 years ago and unfortunately ended up with a stroke and Septacaemia within 2 days. The Dr we had booked wasn't available and the Dr who did the procedure had difficulty getting the PICC line in.
    I am only in my first 2 weeks with my Porta Cath, but I am able to have fluids everyday at home. It seems to be a perfect solution. I have been having IV fluids almost daily for the last 4 years or so and it is very difficult to keep using Cannula's.
    The Subcutaneaous infusion option is ok...but it would take 5 days for a lt to be fully absorbed. I ended up with a litre of fluid from the bag sitting in the exact form on my stomach!!! I would have to bind the area as otherwise it was painful to walk around with the fluid sitting there.
    Good luck. IV Saline is saving my life!

    ReplyDelete
  4. Hi, thanks so much for your comment. It's great to hear from someone who had gone down the same path.

    I'm still on the IV's and trying to make the switch to subcutaneous but finding like you, that it doesn't absorb very quickly and is quite painful. I'm hoping my stomach skin and fat layers will stretch eventually (glamourous I'm sure) and let it in...I guess the old folk in palliative care situations have more flexible skin/subcutaneous layers.

    Great that you were able to get a Porta Cath, and wonderful that you are able to get saline everyday at home.

    It really is simple life giving stuff. :)

    ReplyDelete
  5. Hi. Im a ME and POTS patient in Sth Australia, who just wants to say thank you for your post.

    Im soo desperate now to have the POTS properly dealt with that Im wanting to some how teach myself how to give saline IVs, so now trying to find out online and some how learn (then Im going to have to work out how to get the equipment for it).

    My CFS specialist has been trying to treat my POTS with florinef but its only 30% improved and last week I had another collapse while out. :( I cant leave my house without someone being near my side in case I completely collapse and I live alone..so its a BIG ISSUE.

    My specialist told me the other day that there is nothing more he can do for the POTS. Im going to try to convince him to back me up with getting saline but I really dont think Im going to manaage to convince him, so probably will need to figure all this out by myself if I want a closer to some kind of normal life.

    Im soo glad to hear that you've found a doctor to help you with this (fluid does help me, I was drinking until I vomited.. up to 7 Litres per day at one point, just so I could feel a bit better and not dizzy.. so Im sure IVs would help me).

    Its torment that doctors arent willing to use this treatment on patients who have severe POTS and just expect us to keep living completely disabled by it. The POTS is one of my two worst ME symptoms, so fixing this should make quite a different to my quality of life etc

    Taniaaust1

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  6. Hi Tania,

    Thanks for your comment, I'm really glad you found this post helpful.

    Since writing this post I've finished my subcutaneous saline infusions trial - they didn't help me the same as the IV's, so I had to keep getting IV's 3 times a week and my veins started to get very scarred. I have been really lucky (unbelievably so) and managed to get a port a cath installed through the public system. So now I have 1L saline through my chest port every morning at home.

    Anyway that's not very helpful to you except maybe to show you how important a good GP/ specialist team is, if your doc won't help, try another one or seek a referral. I've had the most luck with cardiologists. There are some that know about POTS though not all, so it's worth checking before making an appointment/seeking a referral.

    Also you could try the home doctor/after hours doctor service to come to your home to insert IV cannulas. I was able to organise this pre port a cath instal by using a letter from my regular GP and specialist. (when I say I - err my parents sorted this for me, organising has been out of my wellness sphere for a while).

    I wouldn't try and put in a cannula for an IV by yourself, you could pass out while bleeding or get air in the line. It's an acquired skill and besides the health concerns I don't think you'd have enough hands to do it safely. Sorry, I know that feeling of just wanting to give it a go and get it sorted, but it's too dangerous. Keep trying doctors.

    I am still trying other meds to help with my POTS (it's better with saline, but still no where near normal - I'm still pretty much bedbound). The list on this website is a good place to start looking for more meds to mention to your doctor. http://www.cfids.org/cfidslink/2009/070104.asp

    I've also heard the following meds suggested for Pots/me
    Midodrine (what I'm trying now),
    Ivabradine (slows down heart via signals to sinus node - didn't go well for me)
    Minirin (increases blood volume - stops peeing)

    It's so important to keep seeking treatment.

    Good luck. xx

    ReplyDelete
  7. How do you find a doctor who will prescribe IV saline treatment???

    ReplyDelete
    Replies
    1. With great difficulty. It took a lot of perseverance.

      Firstly most doctors don't understand how serious M.E can get, so lately I've been giving them the 'voices from the shadows' dvd. That really helps and seems to get them completely off the psychological/exercise track.

      Other than some of the print outs above.. the only thing I did was keep on trying. again and again.
      It may help to take a partner, parents, carer or friend with you to the doctors.

      I've found that 1L over 1 hour (gravity fed with the valve wide open) first thing in the morning really helps me the most.

      Good luck xx

      Delete
  8. Hello Sarah,

    Funny thing is that my daughters name is Sarah to. She has severe CFS and we just tried the Saline Infusion yesterday at home. We were very hopeful that it would help. I have a question for you after I tell you what happened to my daughter while she was getting the Infusion.

    After about 20 min. I asked her how she felt. She said I feel, "High", lol. Then after about an hour or more she said that she felt very relaxed almost as though she took a muscle relaxer. After the Infusion was finished and about half an hour later, she felt sooooo tired that she had to go straight to bed. She said she felt like she had taken a tranquilizer. Then after a very long sleep she got up very hot wanting some ice-cream to cool her down.

    The next day she said that she was very disheartened. She did not feel any Energy benefit from it that she was sooo hoping for.
    I thought maybe that's because this Infusion was only her first one ever. She to had 1 liter of Normal Saline infused.
    I thought, oh no, maybe we need to do this again. To soon to know with just one Saline Infusion.

    Then I thought maybe she had a Herx reaction, and this would be a good sign that it is working for her and not against her.

    What symptoms did you experience? Any of the symptoms that my daughter experienced the first time? How soon did you notice any change? How many Infusions did you have to get, before you noticed a change? Can you go into greater detail with the symptoms you experienced?

    Looking for hope again..........Pam

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  9. Hi Pam,

    sorry im too sick to go into much detail, but your daughters experince sounds much like mine. I find saline helps mostly with neuro symptoms, not with energy.... for that there is only rest and doing 1/3 of what you feel you can do.

    There is more saline info on Cort Johnsons website, health rising.

    xxxx

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  10. Hi Sarah,

    I have no idea if my suggestion will help you or not, but a simple technique seems to have made a huge difference recently for me. I have severe POTS with my ME, and I've been scared to start any drugs that expand blood volume because my blood pressure is borderline high. And I haven't been able to find a doctor to give me IV saline.

    I recently read everything I could find on POTS, and I decided to try one very simple thing: raising the head of my bed by 4 inches. This is something that there is a bit of research to support. For some reason, sleeping on an incline (not just upper body, the whole bed) changes your circulation pattern in such a way that you retain more fluid in your body. Apparently, NASA knows all about this, because astronauts get POTS in space, and they use this sort of tilted-up bed to shorten their readjustment time when they come home.

    Also, bed-bound people tend to develop POTS after a few weeks (although for people without ME or other underlying causes of POTS, this is fairly easily reversed simply by increasing activity). And, apparently you can provoke POTS in a few days in healthy people by raising the foot of their bed!

    Because I was having to spend my entire life in bed, the effect of being flat was probably becoming a double-bind for me: I had to be in bed in order not to make myself even worse, stamina-wise and symptom-wise, but being flat all the time was making the underlying mechanism of POTS worse.

    At first (3 weeks ago), I was really scared that even the 4 inches, if I was tilted all the time, would give me PENE, so I tilted up a day bed in another room and started to spend an hour or two at a time there. After a week, I was pretty confident that it wasn't messing me up, so I put risers under the feet at the head of my usual bed.

    It has been two weeks, and I've been completely shocked at the difference it has made. I have basically gone from bed-bound to house-bound in 2 weeks. I can sit upright for an hour at a time; I can walk around the house; I can even do little things like load some dishes in the dishwasher or make myself a sandwich. (Two weeks ago, my family was leaving a cooler beside my bed with food for the day; I was walking to the bathroom, no other walking.) I've had ME for 8 years, with varying levels of function, but I have never ever had such a rapid change in my stamina.

    I am a little tentative about going public with this, because of course, I can't know positively that my health change is a result of raising the bed. But the timing (and how unprecedented the rapid improvement is) makes me think it's likely. And in any case, it is such an easy, harmless, inexpensive thing to try. There are lots of bed-risers sold on Amazon, or if you have a handy person in your family, they can lift the legs at the head-end of the bed with wood blocks.

    Your blog is the first place I'm posting my experience. I hope this helps you and/or readers of your blog. Wouldn't it be great if this was actually helpful to people with ME and POTS? For myself, I'm hopeful, although it will be a while before I can tell how enduring the improvement is or how far it will go.

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  11. Hi Sarah,
    Just wondering what GP you go to? I am looking for a doctor in QLD who would consider giving me IV saline.
    Thanks

    ReplyDelete
  12. We have manufacture I.V cannula.It’s painless, hypo-allergic, easy to use and breathable.It is convenient, durable and gives acomfortable experience to the user.

    ReplyDelete
  13. Hello fantastic blog! Does running a blog similar to this take a lot of work?
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    ReplyDelete
  14. For those having increased sensitivity, I would suggest checking to see if any of your medical equipment is sterilized with Ethylene Oxide.

    I was having infusions for about 2 years before I started having symptoms, we ended up eliminating everything except the surgical steel of the needle and the gauze, well, I still had a reaction, so we tried to think of reasons why two things that don't normally bother me were causing such intense reactions.

    Turns out, many medical supplies like gauze, especially in medical start kits, are sanitized with Ethylene Oxide which is known to develop increased sensitivity like Latex.

    We ended up switching over to only individual pieces from brands we knew didn't use that chemical and ever since I've been fine. :]

    ReplyDelete
    Replies
    1. So very interesting ! I wonder if that was part of the problem for me.

      I have reactions to the needle as well though if it's left in (like butterfly needles).

      Thanks for the tip.

      Delete
    2. So very interesting ! I wonder if that was part of the problem for me.

      I have reactions to the needle as well though if it's left in (like butterfly needles).

      Thanks for the tip.

      Delete
  15. The anticoagulant aspect of saline solution should not be ignored.



    https://cfsremission.com/2016/09/15/quick-short-term-relief-from-cfs-by-saline-solution/

    ReplyDelete
  16. My daughter has MCAS and POTs and does daily iv saline therapy via a picc line - she can only use Braun IV saline bags, because they are not loaded with chemicals. If she uses EVA or Baxter bags it makes her deathly ill.

    ReplyDelete