IV Saline: Magic Juice

magicjuiceBack in March, I started an experiment with IV saline. Four months in, I have learned a lot about how and when the treatment helps me.

IV saline has been used to treat orthostatic intolerance for many years*, and some ME/CFS patients have also found it helpful. ME/CFS patients may have low blood volume, and autonomic nervous system dysfunction is well documented. Those with joint hypermobility may also have more elasticity in their blood vessels. All this adds up to common symptoms in ME/CFS: dizziness, weakness, altered gait, cognitive difficulties, and fatigue.

Saline helped me get over the hump in recovering from my two day CPET, and so I thought it might be worth another try. My doctor and I agreed to try once weekly infusions of 2 liters of saline (1 liter per hour) for four weeks, take a two week break, then another four weeks of treatment. After the first infusion, my husband said I lost my pallor and seemed more energetic. I was able to tolerate the weekly trip out of the house to get the saline without crashing, which suggests that I was getting at least enough benefit to offset the trip.

After each infusion, I felt like I had an energy bump for a couple days. Sometimes, I could feel it during the infusion itself. I described it to someone as feeling like a film was being peeled off my brain, making it possible to think more clearly. But as the weeks went on, the benefit was less apparent to my husband. I seemed to be holding steady, rather than improving. I started to wonder if it was worth it.

Then I attended the Institute of Medicine meeting in May, and crashed afterwards. I struggled to get to my scheduled infusion two days later. But by the time I started the second liter, I started to feel better. The nurse commented to me that my gait was different, I had color in my face, and my voice was different. She actually couldn’t believe how different I looked leaving the center compared to how I had been coming in, and she made a note of it in my chart. And I felt dramatically better, too. Once again, saline seemed to get me over the hump of the crash.

After consultation with my doctor, we decided that I should reserve the saline for crashes or times when I thought I really needed it. He put standing orders in the system so I could simply schedule infusions when I needed them. He also provided me with a letter (as did my CFS specialist) so that I could get saline while traveling. This turned out to be key.

For the first two weeks of July, I was on vacation with my family. It required a long car ride to get to the quiet house where I spent the trip. After arriving, I was weak and crashed. We went to the local emergency room armed with those letters. It is incredible how easy the process was, especially compared to the horror stories I have heard from patients about their ER experiences. I reported that I felt weak and dizzy, and shared the letters. I was whisked back and set up with saline, without much of an examination or even putting on a hospital gown. And as before, the saline helped me get over the hump of the crash. I debated going back for another infusion, but treatment took so long that I didn’t want to lose another day. I decided to tough it out.

I scheduled an infusion for several days after I got home, but after a long ride in terrible summer traffic it was pretty clear I would not be able to wait. My husband took me to our local ER, and once again the letters eased the way. This time, though, the ER insisted on a gown, drew blood for routine labs, etc. On the upside, they were able to slam that saline in at twice the usual rate – a little over an hour for two liters. And once again, there was a noticeable improvement in my gait, speech, thinking, and energy. My doctor agreed that I could still get my scheduled infusion, so I ended up getting two infusions in one week.

It made a huge difference. Yes, I was crashed but it was nowhere near what I went through after the last family vacation. I’ve been pacing myself pretty strictly, but I haven’t been confined to bed. In dealing with crashes, saline is clearly a huge win for me.

So what does this mean long term? I can add saline to my arsenal for dealing with crashes. It’s not a cure, but it definitely reduces the severity of the crashes (at least, so far). I do not want a port and all the risks that come with that, and home infusion does not appear to be an option with my insurance. But to the extent I can predict my crashes after high activity, I can schedule the saline to help get me over the hump. And if I crash suddenly, there is always the ER with the way smoothed by those letters.

Should you try saline? If you have orthostatic intolerance, it might be worth discussing with your doctor. There is no protocol or standard of care with this. How much saline and when is very much trial and error. But if your doctor is willing to experiment a little bit, it might be worth a try. For me, every little bit helps and evening out the hump of a crash makes a big difference in my quality of life.

Saline won’t help me get back to work and it’s not a miracle cure. But it feels like a miracle to walk out of the infusion center feeling two or three times better than when I walked in. That’s why, when I post about an infusion online, I always say: SALINE!! *jazz hands*



Rosen, SG and Cryer, PE. Postural tachycardia syndrome: reversal of sympathetic hyperresponsiveness and clinical improvement during sodium loading. Am J Med. 1982; 72: 847–850

Burklow, TR, Moak, JP, et al., Neurally mediated syncope: autonomic modulation after normal saline infusion. J Amer Coll Cardiol 1999; 33: 2059-66.


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9 Responses to IV Saline: Magic Juice

  1. Dixie Johnson says:

    I’ve try telling my doctor(s) that Normal Saline makes me feel like I can sit up and watch tv after having this infusion. I can think clearly and just over all feel better. Drinking Gatorade and other fluids just doesn’t get me over the hump. I have POTs and RA and battle low potassium. Thank you for posting this article!

  2. Robert Morley says:

    Out of curiosity, how are you with fasting, Jennie?

    I don’t know if it’s related to the ME/CFS or not, but about half a year or so before the ME/CFS symptoms started, I noticed that I was unable to fast for any significant length of time anymore. As a result, any time I have surgery, I’m put on IV fluids. Like you, I noticed some positive effect, though I’d always attributed it to the nominally cleaner environment of the hospital.

    Reading your post, I’m now wondering if there’s a link between the issues with fasting and the improvement on fluids. It would make some sense, after all, since the point of fluids is to bring up not just sodium, but all your electrolytes (and sugars if you’re on that form of it).

    • Jennie Spotila says:

      I do not tolerate fasting at all. In fact, I’m unable to observe a religious fast each year. I need food every few hours now, especially protein (although my body tells me carbs! carbs! I’ve realized that it’s an attempt to get fast fuel). I do best with frequent small meals, and supplement with electrolytes.

  3. kathy d. says:

    This is very good to see, that saline helps you.

    I had an experience years ago when I fainted in my building and broke my ankle. I had saline infusions in the hospital as staff suspected dehydration contributed to the fainting episode. However, it took a few days of saline, and then suddenly I felt better.

    I don’t think my doctor would write a letter like this, but I do notice that when I drink seltzer I perk up pretty quickly. I haven’t tried electrolytes though. How do you get that? Gatorade?

  4. pat fero says:

    My doctor thought saline would help. That was 1997. Same protocol with 2 liters, one an hour. I went once a month, then stepped it up to every three and then 2 and then once a week. I did that until 2013. WHY? About a liter in, I could feel a difference in my aching and my brain. Sounds odd, but perceptual changes happen why a body is not dried up like a raisin. Symptoms lessened for a few weeks after. In my travels, only a detailed letter from my MD works and only at the ER. I had a horrid experience with a shinning star recommend in Gulf Shores, AL. HE specialized in geriatrics and told me I was set for saline, but he wanted to do a few tests first. As I watched him walk other patients around the corridor to look at their breathing (ck for COPD,) I thought, hey buddy, walk me around if you want to see short of breath. So I got a call the next day to come to see him. He was insulting, would not look at my electronic medical records, said my tests were normal and treated me like I was making crap up. THEN I challenged him and WHEW, this 70 something man just lost it. POINT? traveling…go to ER.

    Other idea, is that there is a med I have been taking that seems to replace the saline. It is an old med for older folks. It increases blood flow to the brain. It works. When I started it in 2013, I got my regular saline and it made me taste salt and feel sick for a few days. THAT is what the MD in in 1997 said would happen if I did not need the saline. MAGIC JUICE. You have to make sure that you do not have kidney abnormalities or high blood pressure. HAPPY FOR YOU JENNIE.

  5. Ren says:

    Good to hear good news. : )

  6. Sarah says:

    I’ve never had or been offered saline, but your description of the film being lifted sounds like the kind of benefit I get from B12 injections. They don’t magically make me feel better (and obviously don’t help with blood volume problems), but it feels like someone has removed a layer of the cotton wool that has been displacing my brain.

    My doctor has reluctantly agreed to let me have one a month for six months. I’m hoping she will see and appreciate the difference it makes.

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