Iv Saline Therapy?

[LastUnicornLady]

Hello, all. I've been doing a lot of searching lately for treatment options that AREN'T based on medication. I currently rely on my Florinef to function, and started doing Midodrine as well, but saw no relief. (Glad I didn't have such an adverse reaction, this time!!!) I'm looking into a lot of different things from chiropractic care to dietary changes, and came upon IV Saline therapy. I think it would probably yield good results for me, because I saw improvement whilst on a constant IV fluid drip in the ER after I fell and hit my head.

All of this being said, I'd really like to talk with my doctor about IV fluids, and whether he is comfortable using them. Before I talk with him, I'd really like to know if anyone here has used this therapy, what their experience was, things they learned, whether they suggest it or not, what it costs (we do have insurance, but we pay towards a very high deductible, so until we get to about $5000 worth of medical bills, it's all out-of-pocket), etc. Also, any tips on bringing it up with my doc would be much appreciated! I'm a normally very shy person, so bringing something up is very difficult for me. Also, he is only sort of knowledgeable on the whole POTS thing, so he really doesn't know too much to begin with. I brought up compression stockings and got him to prescribe me a pair. Pretty much the only thing he really knows about is the Florinef, unfortunately.

Anyways, whatever you guys can share is much appreciated!

[Christy_D]

Here is an article you can show him:

http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

My son had IV Saline at home. It was helpful, but not something he wanted to do continuously (teenage boy!).

[ACsMom]

My daughter tried saline via IV with a home health nurse for POTS/NMH. She responded very well to it. Because she has EDS, long term IV access on her arms would not have worked. She has a port placed near the bottom of her sternum. She orders her supplies every 2 weeks, can tweak the volume based on the season (needs more in the warmer months), or time of month. We use the HSA funds to pay the deductibles. Last year, she met her out of pocket maximum between PT and the infusion supplies early in the year. Right now, the deductibles are running about $100 to $120/5 infusions until the deductible is met.

She is very, very careful to follow sterilized field protocols and has never had an infection in 14 months. She DID manage to pump an entire iv line of air into herself when she forgot that ONE time to bleed the line of air. That resolved itself by the time she got to the second ER but that was a very long day and night.

Here is something that might give you some ideas on talking to your doctor.

http://potsgrrl.blogspot.com/2011/08/how-to-talk-to-your-doctor-about-iv.html

Anne

[LastUnicornLady]

Thanks guys! This is definitely helpful, and I'll be talking with my doctor. Anyone else, if you have any tips, suggestions, recommendations, comments, etc., I'd still love them! Always like to hear from people.

[Becia]

I am in the process of getting this setup for myself, as my doctors can see a significant difference when I've had a liter of fluids via IV as compared to drinking everything, since I've struggled with swallowing as of late. My cells better absorb what I need out of the IV better. Don't know if I'm going to have a port inplanted or a PICC line, but I'm ready to get the ball rolling, because I throw up more than anything, and that doesn't help the hydration, but if they do LR instead of regular saline, the boost of electrolytes actually makes me feel alive and like I have energy. They did this last time in the hospital, and within two days, I felt completely transformed. Still symptomatic when standing, but its like my cells had absorbed it differently than if I had been drinking all in the world, and I felt new again.

My previous cardio's office thought I was insane for wanting to try this. If it gets me back on my feet again, I can't understand why anyone wouldn't let me try this.

I honestly don't know how much this is gonna cost, but we will figure it out somehow.

[Chaos]

My sister was in the hospital recently and the nurse was telling us that there is a nationwide shortage of saline these days. (Really? How hard can it be to make saline? It's salt and water, but whatever...) Anyway, she said that they've been told to use Lactated Ringers (LR) whenever possible now instead of Saline.

Maybe all us POTSies using IV saline are depleting the saline supplies, heh? LOL

http://www.cortjohnson.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/iv-saline-solution-for-chronic-fatigue-syndrome-mecfs/

The above is a link to another article about IV saline use and has more links within it to other sources of info.

I have used IV saline and found it to be greatly helpful. My immunologist ordered it for me but because he is out of state I had to get my local cardiologist to write the actual orders here. The cardio was willing to do it though because he had suggested IV saline as a hypothetical treatment about a year before the specialist in California ordered it. Once he knew another doc was willing to order it, he had no problems doing so.

The problem with IV saline is it's hard to have any double blinded random controlled studies because saline is the normal "control" for a study like this if they were testing an IV medication vs a "control". When saline is the "medication" being tested, it's hard to do a study and have a "control" group.

If you can bring some of this info to your doc and explain why you think it would be helpful in your situation, he may be willing to listen. If you have any knowledge of how you can obtain the IV fluids (like where an infusion center is that your insurance works with) that could make it easier for him to get it for you, that might also help. Sometimes, with some docs, if it seems like it's going to take a lot of extra work on their part to get you something they might turn you down but if you've done a lot of the leg work for them, they'll agree.

Good luck.