My experience of IV saline in the uk

[vikkilouise]

Hi, I think I first heard of IV saline for ME/POTS on here. It's been a long battle to get it (I'm in the uk) so I've blogged about how I got it and the positive effect it's had. I thought I would share it here in case it helps anyone else in the uk trying to access it http://blogfullofhope.blogspot.co.uk/2016/02/iv-saline-for-pots-and-severe-me.html

 

[Sasha]

Hi, I think I first heard of IV saline for ME/POTS on here. It's been a long battle to get it (I'm in the uk) so I've blogged about how I got it and the positive effect it's had. I thought I would share it here in case it helps anyone else in the uk trying to access it http://blogfullofhope.blogspot.co.uk/2016/02/iv-saline-for-pots-and-severe-me.html

Thanks, Vikki, and welcome to the forums.

I wondered if you'd come across this recent news:

http://forums.phoenixrising.me/inde...al-rehydration-in-patients-with-me-cfs.43189/

 

[funkyqueen]

Welcome @vikkilouise !
Great to read that you can have some saline's IV !!!
My dysautonomias are very severe too, and, i used to have since several months, in average 2 infusions of 1 liter of saline per week...
And it just save my life ( i done 6 T.I.A., before those precious infusions)

Maybe you should ask you Dr to test your ADH level... if you do not have or very low , Desmopressin supplementation may help you a lot, with drinking electrolytes !

And you, how many infusions do you have per week , and since how much?
And how much hours per infusion ?

 

[Cheshire]

Welcome @vikkilouise !
Great to read that you can have some saline's IV !!!
My dysautonomias are very severe too, and, i used to have since several months, in average 2 infusions of 1 liter of saline per week...
And it just save my life ( i done 6 T.I.A., before those precious infusions)

Maybe you should ask you Dr to test your ADH level... if you do not have or very low , Desmopressin supplementation may help you a lot, with drinking electrolytes !

And you, how many infusions do you have per week , and since how much?
And how much hours per infusion ?

Did you get the infusion in France?

 

[funkyqueen]

Oui, @Cheshire , mais tu n'imagines pas à quel point j'ai du batailler pour les avoir !
Bien évidemment, je n'ai trouvé aucun spécialistes en dysautonomies en France, ( et toi ? ) ,mais mon Généraliste / mon Interniste me les prescrivent

Yes, Cheshire, but you can not imagine how hard it was for me to having them !
Obviously, i did not find a dysautonomia's specialist in France ( and you ? ), but my GP / my Internist Doctor give me some

 

[Research 1st]

Hi, I think I first heard of IV saline for ME/POTS on here. It's been a long battle to get it (I'm in the uk) so I've blogged about how I got it and the positive effect it's had. I thought I would share it here in case it helps anyone else in the uk trying to access it http://blogfullofhope.blogspot.co.uk/2016/02/iv-saline-for-pots-and-severe-me.html

I've read your blog, you're undoubtedly a brave young woman, and a fighter too. Sad to learn you got an infection, although you could argue this is inevitable as you're clearly very ill and not a 'Chronic Fatigue' patient doctors see in GP surgeries and suggest they do CBT/GET and not come back.

It's good to see you researching your own body, under medical supervision of course. You're a real pioneer, I don't think I'd volunteer for a PIC line, even though I'm housebound too for decades.

The cynic in me, agrees with your own conclusion and remembers IV saline is unfortunately not a long term option, to treat hypovolemia in CFS/POTS as you'll adversely affect your veins (long term) never mind have to get used to being a human pin cushion. With continued use, the risk of infection is also increased, especially if the patient is immune supressed. That's the problem, with having a chronic disease.

Also I think that a lot of doctors will be hostile to IV lines (Vs in your arm), primarily as they aren't trained about POTS, so remain ignorant and you'd probably scare them! I'm thinking of a compromise doctors in the UK could try first before IV and then if that fails, then go for IV as a 'trial'. Indeed the before and after pulse rate (Saturation meter) shown in your blog page, does show a 'result' some patients can report from beta blockers or Ivabradine alone - which aren't invasive. But, on the other hand these meds can't really be tolerated in Asthma and often cause increased S.O.B. Still, a jump from a rate blocker to a PIC line is pretty large... you could argue, not being able to sit or stand upright, is ridiculous so anything needs to be tried when everything else fails.

Dr Bell discussed this a few years back, that IV (I believe he meant in the arm) just isn't feasible, having said that if other options have all failed (Beta Blockers/Ivabradine, Midodrine), then ethically, it should be offered as a last resort. Maybe a compromise on being ''allowed'' IV intermittently could be agreed upon for NHS patients?. Perhaps patients having nuclear medicine scans before hand to calculate the actual blood volume? Having said that, that is not without risk (allergic reaction/radiation exposure). If it showed low red call mass etc, then the POTS patient would have proof they are hypovolemic.

It's so complicated and frustrating with POTS, that short of having proven hypotension (low BP), few people will believe you feel like you have no blood in your head, especially if you only feel faint, and don't actually faint outright. Due to this, it would then seem rare that a GP would agree to a PIC line as your doctor did.

I admire your determination to never give up, especially being so ill for two decades. It always amazes me the destroyed lives patients lead with ME, POTS, Lyme, yet with not a hint of complaint and they take it all in their stride - the exact opposite mindset of what we're accused of having. And that makes me admire the patients even more.

Thanks for posting this IV saline blog Vikki, it's really interesting, but I think realistically we know in the UK, most doctors thinks POTS is something you'd find in B&Q, not an awful complication of having chronic ME!

Hopefully you will raise awareness if not for dozy BPS theory doctors, for us, as you help educate us (the patients) on your experiences and also show your bravery in taking risks. Thank you.

 

[funkyqueen]

@vikkilouise , i begun to read your blog, and Gosh, you have a picline !
I would " like" to have one too, (ideally), because, it's something very painfull, having 2 infusions in harms per week...

In addition, I have little piquables veins (only 3), so I have to think every time to change, trying to preserve them...

My nurses, who are struggling to sting me because of my small veins, even with cathlons for kids, often speak me about picline, but every time I refuse, and explains them , as I'm immunocompromised due to Ritux ,it is out of the question that I take the risk of getting an infection (= the only time in my life where I had a catheter during 48h00 - my delivery-, they found a way to pass me stapphylocoque -fortunately not the golden one), so , no way ! In addition, i guess you have to undergo general anesthesia, for laying your picline? And even short general anesthesia would be too damaging to me ...

I just read @Research 1st , and, as he stated, I know that this is not a solution for life, and I'm literally scared to death, because I do not know how I'm going to do the very next term (my 3 veins start to show signs of weakness, and sick and tired of being pricked (they colapse, and lately even one broken) ...

But these infusions to add me blood volume are just as vital for me: before starting, I could not stand or sit, that 0-4 min /24:00, ... And thanks to these infusions (and corticosteroids, too) ,that I was able to go to the US at OMI ...

In short, since1 month, then, i try to preserve my veins to the maximum, I just made a whole month with a single infusion / week, it's very hard, I feel the lack, I'm taking Desmopressin for help me to retain fluids, but nothing manages to hydrate myself and add me blood volume as an IV of saline ...

I really affraid about how the next futur ... I really do not know how to do, because I am aware that they'll can not sting me ad vitam eternam, especially on only 3 veins, and we tried those veins of the hands and feet, but it was a pure torture, and even the kids cathlon does not pass ...

Well, sorry to unburden myself, I hope to talk to you again about it, 'cause I'm glad to find another severe ME, who fought for having those infusions, and that they also improves you The only other people I know (internet) who have it (they all have piclines like you) are not PwMEers, but suffering from dysautonomias / SED.

ps: do really if you can the tests of your levels of Anti Diuertic Hormone, in France, my internist had not thought of it, it' is Dr. Kaufman, OMI, who tested me (my rate of ADH was so low it was almost undetectable!), and supplementing with Desmopressin help a lot too , in complement ! (You write on your blog that you could drink up to 7 liters per day, me too, between 4.5 liters and 6 liters, and it become to painfull for kidneys, from 4 liters per day), but I still was holding no fluids, because I was peeing on 3 minutes after drinking, even just 3/4 sips ...


PS 2 :i tried fludrocortisone too, during 1 months, but it seem not help at all

PS 3: you'll tell me if you gain weight ? (water retention / cellulitis) or not: I took 12 kg in 1 year, and I attributed directly to these infusions + desmopressin + drink good electrolytes..but. ..no other choices :-/

 

[vikkilouise]

@vikkilouise , i begun to read your blog, and Gosh, you have a picline !
I would " like" to have one too, (ideally), because, it's something very painfull, having 2 infusions in harms per week...

US at OMI ...d those veins of the hands and feet, but it was a pure torture, and even the kids cathlon does not pass ...

Well, sorry to unburden myself, I hope to talk to you again about it, 'cause I'm glad to find another severe ME, who fought for having those infusions, and that they also improves you The only other people I know (internet) who have it (they all have piclines like you) are not PwMEers, but suffering from dysautonomias / SED.

ps: do really if you can the tests of your levels of Anti Diuertic Hormone, in France, my internist had not thought of it, it' is Dr. Kaufman, OMI, who tested me (my rate of ADH was so low it was almost undetectable!), and supplementing with Desmopressin help a lot too , in complement ! (You write on your blog that you could drink up to 7 liters per day, me too, between 4.5 liters and 6 liters, and it become to painfull for kidneys, from 4 liters per day), but I still was holding no fluids, because I was peeing on 3 minutes after drinking, even just 3/4 sips ...


PS 2 :i tried fludrocortisone too, during 1 months, but it seem not help at all

PS 3: you'll tell me if you gain weight ? (water retention / cellulitis) or not: I took 12 kg in 1 year, and I attributed directly to these infusions + desmopressin + drink good electrolytes..but. ..no other choices :-/

I will reply more later but I was referred for a picc but actually ended up with a line in my chest (groshong subclavian)

 

[vikkilouise]

Thanks, Vikki, and welcome to the forums.

I wondered if you'd come across this recent news:

http://forums.phoenixrising.me/inde...al-rehydration-in-patients-with-me-cfs.43189/

I hadn't, thank you for linking me

 

[vikkilouise]

@vikkilouise , i begun to read your blog, and Gosh, you have a picline !
I would " like" to have one too, (ideally), because, it's something very painfull, having 2 infusions in harms per week...

In addition, I have little piquables veins (only 3), so I have to think every time to change, trying to preserve them...

My nurses, who are struggling to sting me because of my small veins, even with cathlons for kids, often speak me about picline, but every time I refuse, and explains them , as I'm immunocompromised due to Ritux ,it is out of the question that I take the risk of getting an infection (= the only time in my life where I had a catheter during 48h00 - my delivery-, they found a way to pass me stapphylocoque -fortunately not the golden one), so , no way ! In addition, i guess you have to undergo general anesthesia, for laying your picline? And even short general anesthesia would be too damaging to me ...

I just read @Research 1st , and, as he stated, I know that this is not a solution for life, and I'm literally scared to death, because I do not know how I'm going to do the very next term (my 3 veins start to show signs of weakness, and sick and tired of being pricked (they colapse, and lately even one broken) ...

But these infusions to add me blood volume are just as vital for me: before starting, I could not stand or sit, that 0-4 min /24:00, ... And thanks to these infusions (and corticosteroids, too) ,that I was able to go to the US at OMI ...

In short, since1 month, then, i try to preserve my veins to the maximum, I just made a whole month with a single infusion / week, it's very hard, I feel the lack, I'm taking Desmopressin for help me to retain fluids, but nothing manages to hydrate myself and add me blood volume as an IV of saline ...

I really affraid about how the next futur ... I really do not know how to do, because I am aware that they'll can not sting me ad vitam eternam, especially on only 3 veins, and we tried those veins of the hands and feet, but it was a pure torture, and even the kids cathlon does not pass ...

Well, sorry to unburden myself, I hope to talk to you again about it, 'cause I'm glad to find another severe ME, who fought for having those infusions, and that they also improves you The only other people I know (internet) who have it (they all have piclines like you) are not PwMEers, but suffering from dysautonomias / SED.

ps: do really if you can the tests of your levels of Anti Diuertic Hormone, in France, my internist had not thought of it, it' is Dr. Kaufman, OMI, who tested me (my rate of ADH was so low it was almost undetectable!), and supplementing with Desmopressin help a lot too , in complement ! (You write on your blog that you could drink up to 7 liters per day, me too, between 4.5 liters and 6 liters, and it become to painfull for kidneys, from 4 liters per day), but I still was holding no fluids, because I was peeing on 3 minutes after drinking, even just 3/4 sips ...


PS 2 :i tried fludrocortisone too, during 1 months, but it seem not help at all

PS 3: you'll tell me if you gain weight ? (water retention / cellulitis) or not: I took 12 kg in 1 year, and I attributed directly to these infusions + desmopressin + drink good electrolytes..but. ..no other choices :-/

Sorry it's taken me so long to reply.

Lovely to find someone else who fought for it and find the infusions benefit you

You don't need a general for a PICC, I've got a groshong in my chest (subclavian) and had it done with a local in theatre, you don't even need to always go to theatre for a picc. If you do lose your last veins and are forced to have a picc look into taurolock, it's expensive but you look the line with it and it dramatically decreases the risk of line infections. I've had a few site infections but they happened when others had been near it, when I do it (completely sterile, chloraprep, tegaderm etc) *touch wood* I've not had any.

Did you try fludrocortisone with salt tablets? I found it increased the effectiveness but still nothing like saline. I did gain weight on it and early on pooled some fluid, instead of in my ankles like normal people i pooled it in my head as it was my lowest point (thankfully not on my brain!). I've not gained weight on saline

 

[vikkilouise]

I've read your blog, you're undoubtedly a brave young woman, and a fighter too. Sad to learn you got an infection, although you could argue this is inevitable as you're clearly very ill and not a 'Chronic Fatigue' patient doctors see in GP surgeries and suggest they do CBT/GET and not come back.

It's good to see you researching your own body, under medical supervision of course. You're a real pioneer, I don't think I'd volunteer for a PIC line, even though I'm housebound too for decades.

The cynic in me, agrees with your own conclusion and remembers IV saline is unfortunately not a long term option, to treat hypovolemia in CFS/POTS as you'll adversely affect your veins (long term) never mind have to get used to being a human pin cushion. With continued use, the risk of infection is also increased, especially if the patient is immune supressed. That's the problem, with having a chronic disease.

Also I think that a lot of doctors will be hostile to IV lines (Vs in your arm), primarily as they aren't trained about POTS, so remain ignorant and you'd probably scare them! I'm thinking of a compromise doctors in the UK could try first before IV and then if that fails, then go for IV as a 'trial'. Indeed the before and after pulse rate (Saturation meter) shown in your blog page, does show a 'result' some patients can report from beta blockers or Ivabradine alone - which aren't invasive. But, on the other hand these meds can't really be tolerated in Asthma and often cause increased S.O.B. Still, a jump from a rate blocker to a PIC line is pretty large... you could argue, not being able to sit or stand upright, is ridiculous so anything needs to be tried when everything else fails.

Dr Bell discussed this a few years back, that IV (I believe he meant in the arm) just isn't feasible, having said that if other options have all failed (Beta Blockers/Ivabradine, Midodrine), then ethically, it should be offered as a last resort. Maybe a compromise on being ''allowed'' IV intermittently could be agreed upon for NHS patients?. Perhaps patients having nuclear medicine scans before hand to calculate the actual blood volume? Having said that, that is not without risk (allergic reaction/radiation exposure). If it showed low red call mass etc, then the POTS patient would have proof they are hypovolemic.

It's so complicated and frustrating with POTS, that short of having proven hypotension (low BP), few people will believe you feel like you have no blood in your head, especially if you only feel faint, and don't actually faint outright. Due to this, it would then seem rare that a GP would agree to a PIC line as your doctor did.

I admire your determination to never give up, especially being so ill for two decades. It always amazes me the destroyed lives patients lead with ME, POTS, Lyme, yet with not a hint of complaint and they take it all in their stride - the exact opposite mindset of what we're accused of having. And that makes me admire the patients even more.

Thanks for posting this IV saline blog Vikki, it's really interesting, but I think realistically we know in the UK, most doctors thinks POTS is something you'd find in B&Q, not an awful complication of having chronic ME!

Hopefully you will raise awareness if not for dozy BPS theory doctors, for us, as you help educate us (the patients) on your experiences and also show your bravery in taking risks. Thank you.

Thanks for your reply, sorry it's taken me so long to reply.

I agree with some a huge jump from meds to a central line, it's worked so well for me though, it's a shame there are others it could help but can't access. I know a few people who want to try it after seeing the improvement in me but I want to scream DONT DO IT as their pots isn't that severe and I just wouldn't take the risk in their situation (although it's horrible for them).

Intermittent saline would be fantastic compramise, I know medical wise they don't understand 'special occasions' but being able to have a bag of it before the occasional special occasion to enable you to do something would be so good or for bad patches.

Brb, ironically my mum has just come in to hook me up

 

[vikkilouise]

Thanks for your reply, sorry it's taken me so long to reply.

I agree with some a huge jump from meds to a central line, it's worked so well for me though, it's a shame there are others it could help but can't access. I know a few people who want to try it after seeing the improvement in me but I want to scream DONT DO IT as their pots isn't that severe and I just wouldn't take the risk in their situation (although it's horrible for them).

Intermittent saline would be fantastic compramise, I know medical wise they don't understand 'special occasions' but being able to have a bag of it before the occasional special occasion to enable you to do something would be so good or for bad patches.

Brb, ironically my mum has just come in to hook me up

I'm not a fan of theories about exercise helps Me/pots and deconditioning but I do wonder if someone was given saline and as intensive physio as they can manage for a short time if it would work. My dr hopes with time physio and the saline helping me that my body will get stronger and pumping the blood back up when upright. I wonder if having saline even for a month might help people just be able to get started on rehab (rehab was so hard for me without it, being propped up for 10 seconds felt like a life time) to just aid their body in getting over the first little bit. I don't mean they will be running around better but just to help the first stages and then there isn't the long term risk

 

[vikkilouise]

Had the best few months I've had so far

 

[Rebecca17]

Hi.
I am wondering if you can help me. I am desperatly searching for a UK doctor who can and will prescribe saline therapy. I have Ehlers Danlos Syndrome (which has large cross overs with ME / CFS) and POTS and it is something that I have found to work but can't get it prescribed. I have a specialist in London who thinks I am a good candidate for it, my GP is happy to manage it but because of funding it needs to come from a consultant and I am now in a perpetual loop of getting passed from pillar to post. I came accross this thread in my search. I can't take beta blockers and my absorption of tablets is dreadful because I have had half my large bowel removed.

I am so frustrated today, there are three things that I find that help me, oxygen, saline and entenox and none of them I can get prescribed - yet I am perscribed every opioid based drug from codine and tramadol to morphone and fentanol, I have even had a trial of medical canabis.

Is anyone still on saline therapy and if so, please would you share with me your doctors names, I am in Berkshire.

Thank you

 

[BlahBlahBlah]

Hi.
I am wondering if you can help me. I am desperatly searching for a UK doctor who can and will prescribe saline therapy. I have Ehlers Danlos Syndrome (which has large cross overs with ME / CFS) and POTS and it is something that I have found to work but can't get it prescribed. I have a specialist in London who thinks I am a good candidate for it, my GP is happy to manage it but because of funding it needs to come from a consultant and I am now in a perpetual loop of getting passed from pillar to post. I came accross this thread in my search. I can't take beta blockers and my absorption of tablets is dreadful because I have had half my large bowel removed.

I am so frustrated today, there are three things that I find that help me, oxygen, saline and entenox and none of them I can get prescribed - yet I am perscribed every opioid based drug from codine and tramadol to morphone and fentanol, I have even had a trial of medical canabis.

Is anyone still on saline therapy and if so, please would you share with me your doctors names, I am in Berkshire.

Thank you

Hi Dr Bansal, prescribes mine in the uk

 

[BlahBlahBlah]

Hi.
I am wondering if you can help me. I am desperatly searching for a UK doctor who can and will prescribe saline therapy. I have Ehlers Danlos Syndrome (which has large cross overs with ME / CFS) and POTS and it is something that I have found to work but can't get it prescribed. I have a specialist in London who thinks I am a good candidate for it, my GP is happy to manage it but because of funding it needs to come from a consultant and I am now in a perpetual loop of getting passed from pillar to post. I came accross this thread in my search. I can't take beta blockers and my absorption of tablets is dreadful because I have had half my large bowel removed.

I am so frustrated today, there are three things that I find that help me, oxygen, saline and entenox and none of them I can get prescribed - yet I am perscribed every opioid based drug from codine and tramadol to morphone and fentanol, I have even had a trial of medical canabis.

Is anyone still on saline therapy and if so, please would you share with me your doctors names, I am in Berkshire.

Thank you

I thought entenox was really bad if used too often in people with eds?

 

[BlahBlahBlah]

I've lost my log in for when I posted this original thread but I've now done a blog post about coming up 2 years on saline http://blogfullofhope.blogspot.co.uk/2017/04/iv-saline-2-years-on.html

 

[frozenborderline]

I get benefit but only for a few hours. wonder about hypertonic

 

[BlahBlahBlah]

Found my old thread. 3.5 years on its been a life changer still. I’m still gaining strength. I still live life in bed on the whole but armed with massive doses of morphine and onsdenstron I can push myself and have amazing experiences, in the summer I spent a week visiting longlete Safari park and a week in Brighton. I don’t manage all day out of bed on this epic adventures, my M.E isn’t cured but after over half my life in bed, well I have no words for it.

I’m lucky that my central line *touch wood* is going strong, it’s one of my biggest fears in life. Most 3.5 years have been problem free but I have had 2 trips to a&e (one as an emergency), it’s disappointing that this hasn’t worked as a kick start to my body. I’ve built up muscle from being so weak (not walking yet but my standing is strong and I might of been walking sooner if I used all my energy on physio but I’ve used it on having some fun as I was missing that for so many years) but mybody just goes back downhill within 2 days of stopping. My mum and I found it a bit scary how much I went downhill in a&e as I hit 2 days without fluids, it was like every 10 minutes a very severe M.E symptom would reappear (even the odd ones like a cold body but uncomfortably hot face).

This is no cure but my god it’s been a turning point. My life isn’t how I want it- most days laying in bed in the dark and quiet but I have 3 trips booked to look forward to, Ive stayed in hotels, eaten in restaurants (I find that very tough though unless it’s a quiet one), I’ve made a few new friends in the real world and I went somewhere which wasn’t a hospital where I was greeted by name (that only ever happened at hospital), I even met my neighbor briefly who I’ve lived next to for over 15 years but who has never seen me and just knows me as the person in the room with the blackouts.

I’m not an emotional person but one of my dreams come true of something I managed to do and I felt like crying, not at joy at what I was seeing but that there are others who could be experiencing this maybe if only they had access to some salty water into their veins . I don’t let myself think what would of been different if I had been allowed it 10 year since before when I first asked.

My doctor believes it’s working by the effect the sudden stretch with the increase of blood volume has on the baroreceptors and when I read about all the things their signals go to it makes a lot of sense.

Happy to answer questions but please no one tell me I would get the same effect if I drank a pint of beer in a pub like a dr did via PM last time

 

[BlahBlahBlah]

Forgot to say my saline, supplies and nursing support (which I only use over the phone as my parents and I manage) is now all provided by the NHs