Back 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.