Saline Infusions - 2xweek

[dsdmom]

After speaking again with Nancy Klimas yesterday we decided to try saline infusions 2x a week to see if it helps me feel better. I just scheduled some with my first one being this saturday. Before I got CFS I had to have infusions when I was pregnant and severely sick - I always felt amazing afterward. However, since I've gotten CFS I've had an infusion @ Nancy's clinic and felt HORRIBLE afterward. The same thing happens to me when I take salt pills. I just feel really really sick. So I am really hoping that my reaction to the infusion in Miami was just me on a bad day and hoping I feel better with them. But I'm curious if my not feeling well with an infusion is a reflection of my body not being used to 'normal' blood volume and not liking it. Anybody have any thoughts on this?

The other treatment that is on the table is ivig - although this is through my neurologist and not Nancy. However she said that people generally feel better after ivig because of the blood volume expansion and that it is different from getting saline in that there are proteins that hold onto the volume for a longer period of time. Neurologist has to get insurance to approve it - I am guessing thye are going to say no and we are going to have to fight but we'll see.

 

[muffin]

Just curious: Do the Saline Infusions or salt tabs have any affect on your blood pressure? Have you taken it before the infusions and then after the infusions?
How about drinking lots of different fluids (water, coke, Gatorade, etc) and eating salting foods like pretzels, nuts, etc. That's what I do as my body craves that salt like crazy. Might tolerate it better than the saline or salt tablet hitting your system so hard and fast.
Curious about your BP though.

 

[dsdmom]

I honestly have only tried the salt tabs a handful of times - and my bp wasn't dramatically different. I already drink a ton of fluids and push salt like crazy. I kow all the tricks - but just don't seem to get my bp up high enough. 100/60 is the best I can do. Before I got sick 100/60 was normal and I felt fine with it. But now most of the time it's 80/50 and I feel like a**.

I guess I'll report back after my first infusion on saturday.

 

[muffin]

My BP has been as low as 50/30. My sister is a nurse and became hysterical when she took my BP (she kept taking it and screaming at me what was i doing to make it so low). It was like gravity was pushing and pulling me down and so I just went off and went to sleep for a good 3 plus hours. Meanwhile my sister (the nurse) is threatening to call 911 and get an ambulance to the house since those BP numberrs were crisis numbers. I told her to knock it off since this happens all the time and I just drink fluids and eat salt and then sleep like the dead for hours and hours. It has been several years since those dangerously low BP numbers and I don't know why this stopped. But my BP remains low even for a heavy smoker (and wearing TWO Nicotine patches at the same time as smoking).
Keep pushing fluids and salt. Also try drinking Gatroade as that seems to help my husband's odd dizzyness issues.

 

[dsdmom]

I had my first infusion this morning- went fine. My dr had it go over 2 hours though which is about 1/2 as fast as a normal person would get it. But I seemed to handle it fine which was good.There was a girl (woman) next to me getting her first infusion of ivig. I was watching her like a hawk since my dr is trying to get it approved for me. She ws doing fine @ first then started having breathing issues, a headache, nausea and then full blown chills & achiness - which is really what I've heard about. I left before she was done but am not looking forward to those effects if I do get that!

In the meantime, we're going to do the saline 2x a week and maybe it will help with volume - we'll see!

 

[Sushi]

Glad the saline went well. My doc (an autonomic specialist) used to leave standing orders at an IV clinic for his designated patients to get IV saline on request. This let them bypass the horrible ER. He also gave it room temperature and SLOWLY. He would prescribe 2 -4 bags and most patients found this relieve a lot of symptoms. As he also has POTS, he would get himself hooked up to IV saline in his office on bad days.

I never had to get saline but do keep a couple of bottles of unflavored Pedialite at home and several times have needed to glug a whole liter down to deal with symptoms. It also worked, but not as well as IV saline.

Sushi

 

[Gemini]

In the meantime, we're going to do the saline 2x a week and maybe it will help with volume - we'll see!

dsdmom,

am interested in hearing how your saline infusions go.

did Nancy Klimas (or your dr) test your blood volume?

Gemini

 

[dsdmom]

HI Gemini,
No, nobody has tested my blood volume. Nancy assumed I had low volume I think - she pretty much said that all CFS'ers have 1 L less than the normal person. So we're walking around like we just gave blood all the time.

I'll keep you posted how I do - I think you have to do it regularly to see an effect ?

 

[JT1024]

Hi dsdmom,

Before you think of getting the IVIG, you might want to consider what it is made from. It is most likely a blood product and may contain viruses you may not want.

Given recent news of XMRV confirmation by the NIH and FDA and recent recalls of vaccines contaminated with viruses (enterovirus vaccines), I would not want any blood product if I could avoid it.

I don't have the answers but I would be cautious.

~ JT