Poll on the effects of IV saline on ME/CFS symptoms

[taniaaust1]

I searched to see if there was already a poll before I started this one but didn't find it! Why do I never find these things when I do a search?!!! Don't worry about trying to find the link for me.

it wasnt you. The poll isnt at this site (it was at a ME site not a CFS one) and the survey was on the various treatments and drugs of ME and how they affected people, so by searching "saline" poll you wouldnt have found it anyway.

I dont think I'd find it again if I hadnt printed it off and put it into one of my medical files at home. (I may of put the thing in my POTS folder).

 

[NK17]

@Gingergrrl I'm so sorry to learn that you had a bad reaction and problematic post 2nd IV infusion experience.

Since I've never had one and I'm on the path of trying to get my ME specialist and my PCP to talk and eventually agree that I might benefit from saline IV, all the information I'm getting through this poll and the answers, are going to be very helpful.

I'm sorry I don't have any first hand experience or knowledge on the subject. I know that since I was a toddler, whenever I'd feel weak and hypotensive, I'd reach for a nice glass of water. As a child I suffered from horrible glandular fever's episodes and cyclic vomiting and I remember my doctor telling my mom to keep me well hydrated by giving me homemade oral liquids. Looking back and after reading on the subject it is clear that I would have benefited from saline IV back then and might still benefit now.

If I could chose I'd love to try saline IV at home and I would also be extra careful in not overdoing it after the infusion, although I'm the first one guilty of pushing my envelope always a tiny bit too far and crash and burn ;(.

 

[Ema]

The problem for me is that I need to do it so often to reap the benefits. Once a week or two doesn't really do anything yet that is about as often as I really like to get an IV.

Also there are different types of hydration fluids...I always get a headache from lactated Ringer's but not from normal saline.

 

[Gingergrrl]

@zzz

If you saw the bag and it said one liter, I think we can assume that's correct. A two-liter bag would have explained everything...

I'm 99% sure that the bag said one liter and the nurse is very thorough and referred to it as a one liter bag. It was identical in size to the first bag (last week) which I read and said one liter. I really do not think it was the wrong bag although that would be a good explanation!

From the answers you've given to my questions since my first post in this thread, I think we can rule out an allergic reaction- you've described absolutely no signs of one. And periorbital edema doesn't really fit the eye pain you described; that example was from the allergic reaction that we've concluded you don't have. As implied by @taniaaust1, the pressure behind the eye is best explained as part of the general headache.

Do you mean we can rule out allergic reaction b/c I had saline so many times in the hospital and I was fine? You had said something about building up allergens that can happen at any time so I just want to make sure I understand. But other than the itching from the tape, I did not have a rash or hives or anything like that. Also when you first mentioned peri-orbital edema you said it could be an excess of fluid behind the eye (which worried me!) but now you are thinking it was just part of the headache. How do I know for sure? The headache and eye pressure are gone today but it lasted for about 48 hrs off and on.

So the symptoms of excess saline solution that I referred to in my first post seem to fit your experience the best. As for what exactly is happening, the best explanation seems to be hyponatremia - low sodium levels. The symptoms for hyponatremia are the same symptoms in that list from my first post, which certainly implies that that's where that list came from. Hyponatremia can also cause fatigue, which is the one symptom you had that wasn't in that list.

If this is the case (and I have no idea!) why would it not happen with the first saline infusion one week earlier if it was the identical amount and type? Do you think it would be dangerous to try saline one more time (one liter) in a week? I will of course discuss this with my cardio first. I sent an e-mail to his PA last night b/c she is the one who advocated to get my prescription increased to 3x/wk and I wanted to let her know what happened. I told her about the headache w/eye pressure and that I wondered about a reaction to the saline or other chemicals involved. She probably thinks I am an annoying and crazy hypochondriac patient but I wanted to let her know what happened and in the hospital she was very nice and helpful.

It is just strange b/c if I have low blood volume, it would seem that this is a good treatment for me and I would not get hypervolemia from one bag of saline 1x/wk.

So even though you're increasing your sodium levels in line with the additional water, due to the fact that the body has two separate systems for managing sodium and water, your total sodium level may decrease! This is apparently what is happening to you. Very rare indeed! Fortunately, assuming that this is the problem, there are various treatments for this condition; your doctor would know which is best for you.

What would the treatments be? I am just curious.

 

[Gingergrrl]

@Gingergrrl I'm so sorry to learn that you had a bad reaction and problematic post 2nd IV infusion experience.

Since I've never had one and I'm on the path of trying to get my ME specialist and my PCP to talk and eventually agree that I might benefit from saline IV, all the information I'm getting through this poll and the answers, are going to be very helpful.

I'm sorry I don't have any first hand experience or knowledge on the subject. I know that since I was a toddler, whenever I'd feel weak and hypotensive, I'd reach for a nice glass of water. As a child I suffered from horrible glandular fever's episodes and cyclic vomiting and I remember my doctor telling my mom to keep me well hydrated by giving me homemade oral liquids. Looking back and after reading on the subject it is clear that I would have benefited from saline IV back then and might still benefit now.

If I could chose I'd love to try saline IV at home and I would also be extra careful in not overdoing it after the infusion, although I'm the first one guilty of pushing my envelope always a tiny bit too far and crash and burn ;(.

@NK17 Thank you and I'm sorry I didn't get a chance to let you know what happened. My bad reaction once I got home happened quickly and worsened for several hours. I am glad this thread and poll is helpful to you (and hopefully for others in the future too!) and that is always what I am hoping when I post stuff. I don't want anything I've said or experienced to deter you from trying saline and I have weird freak of nature reactions to things that no one else seems to get! I definitely am not comfortable doing this at home without a nurse present but if I get to the point that it works and all goes smoothly again, I may change my mind.

The problem for me is that I need to do it so often to reap the benefits. Once a week or two doesn't really do anything yet that is about as often as I really like to get an IV. Also there are different types of hydration fluids...I always get a headache from lactated Ringer's but not from normal saline.

@Ema What is lactated ringers? I googled it but didn't quite understand? Is that a type of saline that is different than normal saline? I think I assumed that there was only one type! I wonder if the two infusions involved two different types although that seems unlikely for the same infusion center. I will ask about this.

 

[CFS_for_19_years]

@CFS_for_19_years Thank you for those two links and I did not realize that plain water could raise a person's BP so much and thought it had to be salt water or electrolyte drinks (like Nuun or Pedialyte.) From the very beginning of my illness, my husband kept telling me that I was dehydrated and that I needed to drink more water/fluid and I thought this was irrelevant if my symptoms were caused by a virus & CFS. I guess I was totally wrong and drinking water is more important than I thought in raising BP and calming autonomic symptoms.

During the first years of my illness, I heard of Gookinaid as a fluid replacement because Cheney recommended it. The name has been changed to Vitalyte. Two things that help water be absorbed are salt and some kind of sugar. Even plain water also has an immediate pressor effect, as mentioned in the articles I posted earlier. The added salt and sugar will help the water enter your system.

http://www.vitalyte.com/blog/2014/chronic-fatigue-syndrome-hypertension

In early 1997, some of the patients at the Johns Hopkins University Medical Center‘s Chronic Fatigue Syndrome (C.F.S.) studies in Baltimore, reported good results while using Vitalyte Electrolyte Replacement, known then as “Gookinaid E.R.G.”* Karen DeBusk, R.N., the director of the study at Johns Hopkins, requested a supply of Gookinaid™ for use in evaluating its effectiveness in relieving the malaise fatigue and lassitude that characterizes C.F.S. Results were so dramatic that Gookinaid was recommended as a supplement to drug therapy for the syndrome, as well as for other dehydration and electrolyte imbalance conditions, including: other neurological or hormonal induced electrolyte imbalance syndromes, and for patients who have had a portion of their digestive tract removed, limiting the return of fluids and electrolytes to the system.

Patients who suffer from chronic fatigue syndrome are found to have low electrolyte and fluid levels, accompanied by hypotonicity (low blood pressure). Low electrolyte and fluid levels are the major factors in fatigue. In individuals with C.F.S., the autonomic nervous system is sending “mixed” signals to the endocrine system causing the body to lose more electrolytes, especially sodium and potassium, in urine than normal. This causes greater electrolyte and fluid loss, resulting in lowered blood volume and blood pressure. Therapy with experimental drugs to readjust the hormonal signals to help maintain normal electrolyte levels and reduce diuresis supported by oral fluid and electrolyte replacement has been very effective in helping the C.F.S. individuals resume more normally functional lives. The only electrolyte replacement drink found to be really effective in maintaining electrolyte and fluid levels is VITALYTE™ lytes to the system.

Here are some notes from Dr. Cheney, plus a homebrew recipe for fluid replacement:
http://www.dfwcfids.org/healing/gokhmbrw.htm

You can buy Vitalyte at local shops or online: http://www.vitalyte.com/products/electrolyte-replacement.html
At the bottom of this page is a place to sign up for their newsletter and get discounts on product:
http://www.vitalyte.com/blog/category/events/

Here's another online retailer: http://www.luckyvitamin.com/sb-vitalyte-electrolyte-replacement

I don't have any stake in the company - sorry if this comes off as a commercial. One other weird thing is that Vitalyte helps with my dry eyes. It takes a few weeks to feel those effects, and I notice it when I run out of product. That and flax oil.

 

[optimist]

I ticked "I have never had IV saline", but I think I have had at some hospitalisations pre-ME, which has nothing to do with the poll.

"Fun fact": According to Wikipedia, 1 litre of normal saline contains 9g of NaCl.

 

[Gingergrrl]

I rarely drink plain water at home. During the first years of my illness, I heard of Gookinaid as a fluid replacement because Cheney recommended it. The name has been changed to Vitalyte. Two things that help water be absorbed are salt and some kind of sugar. Even plain water also has an immediate pressor effect, as mentioned in the articles I posted earlier. The added salt and sugar will help the water enter your system.

I don't have any stake in the company - sorry if this comes off as a commercial. One other weird thing is that Vitalyte helps with my dry eyes. It takes a few weeks to feel those effects, and I notice it when I run out of product.

@CFS_for_19_years Thank you for the info and we just ordered a container of the citrus Vitalyte from Amazon. I am looking forward to trying it and need an alternative to Pedialyte!

I am not worried that you have stake in the company and that never crossed my mind LOL!

I ticked "I have never had IV saline", but I think I have had at some hospitalisations pre-ME, which has nothing to do with the poll.

"Fun fact": According to Wikipedia, 1 litre of normal saline contains 9g of NaCl.

@optimist I know this is a stupid question but is 9g of NaCl a lot or a little?

 

[Revel]

@Gingergrrl, 9g of NaCl would yield approximately 3.5g sodium (if I remember correctly).

Most POTS patients being encouraged to up their salt intake are told to aim for 10g/day (about 2 teaspoons worth), which would contain roughly 4g sodium.

Don't know whether that helps or not ?

 

[taniaaust1]

@Gingergrrl, 9g of NaCl would yield approximately 3.5g sodium (if I remember correctly).

Most POTS patients being encouraged to up their salt intake are told to aim for 10g/day (about 2 teaspoons worth), which would contain roughly 4g sodium.

Don't know whether that helps or not ?

??? are you sure that is right as NaCl is normal salt Na=sodium Cl=chloride and if my brain isnt messing up on me NaCl is normal salt so that would even almost 2tsp of salt in a bag of 1L saline IV. (there is 5g in a tsp isnt there?).

 

[taniaaust1]

@Ema What is lactated ringers? I googled it but didn't quite understand? Is that a type of saline that is different than normal saline? I think I assumed that there was only one type!

saline IV is just basically a salt (sodium) and water IV. Lactated ringers is an IV for blood loss so has other things in it too (chloride, sodium lactate, potassium chloride, and calcium chloride). I cant remember now if it also has some glucose or a kind of sugar iin it too or not as well.

I think the saline IV may be higher in sodium but Im not sure.

 

[Revel]

@taniaaust1, I think the calculation is correct. NaCl is roughly 40% Na and 60% Cl by weight - 40% of 9g is 3.6g (technically its 39.3%, so 3.5g).

I might be wrong though, as my memory isn't what it was. Worse today as I was up all night with a sick dog (his own fault, he will insist on eating cr*p !!)

 

[optimist]

According to this site:
http://www.traditionaloven.com/culinary-arts/cooking/table-salt/convert-tea-spoon-tsp-to-gram-g.html
there's 5.69g salt in one tsp.

@optimist I know this is a stupid question but is 9g of NaCl a lot or a little?

I suppose that question is one that I am not qualified to answer But, if its just two tsp of normal salt, it does sound like a reasonable amount

 

[Gingergrrl]

saline IV is just basically a salt (sodium) and water IV. Lactated ringers is an IV for blood loss so has other things in it too (chloride, sodium lactate, potassium chloride, and calcium chloride). I cant remember now if it also has some glucose or a kind of sugar iin it too or not as well.

@taniaaust1 Thank you for explaining what lactated ringers is vs. saline and I had not heard of that before.

I might be wrong though, as my memory isn't what it was. Worse today as I was up all night with a sick dog (his own fault, he will insist on eating cr*p !!)

@Revel and everyone else who was calculating the sodium amounts for me, I am math-impaired and unfortunately I have no clue about teaspoons and grams so I got lost but I appreciate the info (and Revel, I hope your dog is feeling better today!)

 

[CFS_for_19_years]

@CFS_for_19_years Thank you for the info and we just ordered a container of the citrus Vitalyte from Amazon. I am looking forward to trying it and need an alternative to Pedialyte!

@optimist I know this is a stupid question but is 9g of NaCl a lot or a little?

The citrus flavor is mild and is my second choice for flavor variety. My first choice is fruit punch flavor. I forget if I've tried the other flavors.

9g of NaCl in one liter of saline is neither a lot or a little, it is just right. It mimics the amount of NaCl that is present in plasma, hence it is often called "normal saline" at a strength of 0.9%. It is isotonic with plasma. The selling point with Vitalyte is that it is also isotonic and moves into cells easily.

 

[optimist]

9g of NaCl in one liter of saline is neither a lot or a little, it is just right. It mimics the amount of NaCl that is present in plasma, hence it is often called "normal saline" at a strength of 0.9%. It is isotonic with plasma.

Wow! So if I have 5 litres of blood in my body that is 55% plasma, I've got 23g of NaCl flowing around? I guess if a lion came up to eat me I would taste quite salty

 

[Gingergrrl]

The citrus flavor is mild and is my second choice for flavor variety. My first choice is fruit punch flavor. I forget if I've tried the other flavors.

9g of NaCl in one liter of saline is neither a lot or a little, it is just right. It mimics the amount of NaCl that is present in plasma, hence it is often called "normal saline" at a strength of 0.9%. It is isotonic with plasma. The selling point with Vitalyte is that it is also isotonic and moves into cells easily.

@CFS_for_19_years I was trying to decide between the citrus, lemon and fruit punch and decided to order the citrus first.

Thank you for explaining that the saline is "just right" at 0.9% and that it is isotonic with plasma. That is actually exactly what I was trying to ask but did not know how to phrase it. If Vitalyte is like saline, I expect it will be really helpful. Can I ask, how many cups of Vitalyte do you drink per day plus how many cups plain water?

I told my CFS doctor how I reacted to the saline and he wanted to make sure that I was actually given one liter of 0.9% saline with no other additives and not given something else by mistake. There is no way to know but when I try it again, I will closely look at the bag. I wish I could talk to my cardio before my appt on Weds but this is not possible so I will not have any additional saline until after I see him just to be safe.

 

[CFS_for_19_years]

@CFS_for_19_years I was trying to decide between the citrus, lemon and fruit punch and decided to order the citrus first.

Thank you for explaining that the saline is "just right" at 0.9% and that it is isotonic with plasma. That is actually exactly what I was trying to ask but did not know how to phrase it. If Vitalyte is like saline, I expect it will be really helpful. Can I ask, how many cups of Vitalyte do you drink per day plus how many cups plain water?

Most days I drink 4 to 6 cups of Vitalyte and probably 1 to 2 cups of plain water. I make one quart of Vitalyte at and time and refrigerate it and then keep refilling the same drinking glass on my kitchen counter. I drink at least 2 cups in the a.m. to overcome morning dehydration. I find it's easiest to drink when it's NOT ice cold.

 

[Gingergrrl]

Most days I drink 4 to 6 cups of Vitalyte and probably 1 to 2 cups of plain water. I make one quart of Vitalyte at and time and refrigerate it and then keep refilling the same drinking glass on my kitchen counter. I drink at least 2 cups in the a.m. to overcome morning dehydration. I find it's easiest to drink when it's NOT ice cold.

This is great and exactly what I was thinking. Not sure when my Vitalyte will arrive and it might take a few days. I am supposed to drink Pedialyte in the mornings but the blue flavor is the only one I can tolerate even mixed with 50% plain water! I still do not drink enough each day no matter how much I try. I am hoping to change that and do what you are doing.

 

[Gingergrrl]

I updated my saline IV stuff in another thread and am linking it here. This is the first time I have ever created a link so I apologize if it didn't work and I am sending anyone on a wild goose chase!