My reason for this post, and for the title, is that lots of colds start springing up this time of year. And though colds are viral and don't respond to antibiotics, they frequently turn in to sinus infections which may require antibiotics to clear.
So I want to talk to you about Neti Pots, NeilMed, and sinus power-washing.
Before we got married and were dating, my wife thought I was on way too many antibiotics, this was four years before my health crisis and subsequent diagnosis of CVID. Now we recognize that they're a vital part of keeping me healthy, and that's just the way it is. It's scary reading articles about an antibiotic-free future because of the overuse in animal production industries and the growing number of superbugs, it could well prove fatal for me. But it is what it is as it's unlikely that feed lots are going to change their practices due to economies of scale.
May of last year I had a complete work-up at National Jewish in Denver, and they were strong advocates of NeilMed Sinus Wash. I was very resistant to it: you're taking a squeeze bottle of a saline solution and flushing it up one nostril and out the other, yuck doesn't begin to cover it. After that trip and seeing my immunologist to discuss their new findings (which mainly confirmed that my original immunologist (same practice, he's now retired) did an acceptable initial workup) that I had acid reflux, he was also pressing me on using NeilMed, and he gave me a starter bottle and said that he and most of his staff use it.
So I tried it. And I hated it. And I still hate it, but I do it daily and sometimes twice a day.
Since I started doing this, for over 17 months, I have had one sinus infection that required antibiotics. My wife started doing it, and it has greatly sped-up or stopped cold sinus infections for her. Just two weeks ago I was coming home from a party and complained to my wife that my right eye hurt, a sinus pressure issue which is a pretty strong indicator that something is attacking me. I did one of my rare twice-a-day flushes when I got home before I went to bed, did it again when I got up as part of my normal morning routine, and that was it. A friend of mine at the same party developed nasty bronchitis and was out of work for a couple of days.
Personally I microwave my bottle to take the chill out of it. You don't want it hot, just slightly warm to the touch. The time required to warm it varies tremendously depending on microwave power: my home microwave takes about 35 seconds, my parents 14 seconds.
I can't do a neti pot, I have some fused vertebra in my neck and just can't turn my head properly for it, so I use the squeeze bottles. I have three pairs of bottles for my wife and I: at home, travel, and a set at my parents along with the salts so that we don't have to take them there. You should replace the bottles regularly, I think they recommend every three months, mine are about due for replacement. I write our initials on our bottles with a Sharpie and I'm going to also put the date on the next batch to keep track of when they should be replaced.
They're available at pretty much any pharmacy, they're not expensive, just be certain that you use distilled water in them! There were a couple of cases where people died from using tap water that drew from a river that contained a parasite that went in to their brain and killed them. There are different brands available, I'm sticking with NeilMed because it's been a consistent performer for me. The only problem that I've had is I think they had a production glitch and I got a couple of bottles where the internal rubber tube was just maybe an eighth of an inch too long and it messed up how it's supposed to squeeze and spray, a quick trim with a clean knife and you're solid.
A friend of mine was a little concerned when I told her that I was doing this, she found a study that showed an increase in colds and sinus infections with using these twice a day. First, it was a poorly controlled study. They had a group of 40 or so people doing sinus flushes twice a day when the NeilMed recommends once a day unless you have a bad problem. Second, they didn't control their study properly. They should have had one group not using flushes, one group doing it once a day, and one doing it twice a day. So it was a bad study.
My personal evidence and the testimony of others that I know that use them tell me that it is a safe and effective product, but as always, your mileage may vary.
Saturday, November 30, 2013
'Tis The Season To Get Sick! Fa-la-la-la-la, la-la-la-la! (Part the First)
Wow. A year and a half since last I blogged. I've been very fortunate, my health has been pretty stable. My Hizentra dose has not changed, though I have changed some techniques. I'm doing once-a-week infusions now, I'm also using 12mm needles so that I have less surface irritation over the week. But the most important change that I've made was lidocain.
As of tomorrow, I will have done 340 infusions, and they've all been abdominal. We've almost always had a dog during that time, and there was no way I was going to risk doing them in my thighs, and the arms and upper back just didn't seem practical. I'll do it myself, and my abdomen is the most convenient area. Well, over that time, I've developed some scar tissue and frankly, it hurts sticking in those needles now. I've read about people using topical anesthetics on the IDF forums and contacted my doctor to try it out, and I'm VERY happy that I did!
It's a little inconvenient, and it entails a change to both your supply and infusion methodology. First, the cream is topical, and has to be covered with a bandage, like the Tegraderms or similar that come with your SCIG needle kit. Thus, you now need twice the number of Tegraderms. I had some supply problems with my pharma, so I ordered a box on Amazon and will never need more again. Second, the cream has to be applied for an hour before you do your infusion, so you have to schedule accordingly. This works well for me, because my infusion model is that I load 55 ml of my 60 ml infusion in to my Freedom 600 syringe, then I set the syringe, needle capped, upright in a clean Starbucks bottle and let the bubbles settle. After an hour, bubbles are gone, and I load the final 5 ml. It's also then time to clean off the cream and start your infusion.
Here's the tricky bit: you need to know where you applied the cream so that you correctly place the needles in the numbed area. I have considered a Sharpie marker: draw a circle about the size of a nickel for the cream, apply cream, cover with bandage, and wait. But I'm not sure that repeatedly drawing on yourself with a Sharpie is safe, so I went and talked to a tattoo artist. They use surgical markers to draw their to-be-inked designs, which presumably are safe. In fact, the guy that I talked to would have given me one, but he'd just run out. So I'll be ordering one from Amazon next week. I use my wife as a spotter, which is fine if you have someone handy.
I have not been illness-free, but much better than 2009 when this whole CVID thing started. Just before Christmas last year, I had a REALLY NASTY GI bug hit me, I'll describe it as nothing more graphic than high-pressure expulsion from both ends. Unfortunately my immunologist was not immediately available as he was recovering from surgery, nor was my regular doctor returning my calls (he has since been fired), fortunately my wife did her undergrad with a woman who became a family practice doctor, and she called in two scripts that took care of me, though it took several days for me to regain strength and that was right at the time that we were driving 600 miles up to Colorado for New Years.
WHEEE!
On to Part the Second!
As of tomorrow, I will have done 340 infusions, and they've all been abdominal. We've almost always had a dog during that time, and there was no way I was going to risk doing them in my thighs, and the arms and upper back just didn't seem practical. I'll do it myself, and my abdomen is the most convenient area. Well, over that time, I've developed some scar tissue and frankly, it hurts sticking in those needles now. I've read about people using topical anesthetics on the IDF forums and contacted my doctor to try it out, and I'm VERY happy that I did!
It's a little inconvenient, and it entails a change to both your supply and infusion methodology. First, the cream is topical, and has to be covered with a bandage, like the Tegraderms or similar that come with your SCIG needle kit. Thus, you now need twice the number of Tegraderms. I had some supply problems with my pharma, so I ordered a box on Amazon and will never need more again. Second, the cream has to be applied for an hour before you do your infusion, so you have to schedule accordingly. This works well for me, because my infusion model is that I load 55 ml of my 60 ml infusion in to my Freedom 600 syringe, then I set the syringe, needle capped, upright in a clean Starbucks bottle and let the bubbles settle. After an hour, bubbles are gone, and I load the final 5 ml. It's also then time to clean off the cream and start your infusion.
Here's the tricky bit: you need to know where you applied the cream so that you correctly place the needles in the numbed area. I have considered a Sharpie marker: draw a circle about the size of a nickel for the cream, apply cream, cover with bandage, and wait. But I'm not sure that repeatedly drawing on yourself with a Sharpie is safe, so I went and talked to a tattoo artist. They use surgical markers to draw their to-be-inked designs, which presumably are safe. In fact, the guy that I talked to would have given me one, but he'd just run out. So I'll be ordering one from Amazon next week. I use my wife as a spotter, which is fine if you have someone handy.
I have not been illness-free, but much better than 2009 when this whole CVID thing started. Just before Christmas last year, I had a REALLY NASTY GI bug hit me, I'll describe it as nothing more graphic than high-pressure expulsion from both ends. Unfortunately my immunologist was not immediately available as he was recovering from surgery, nor was my regular doctor returning my calls (he has since been fired), fortunately my wife did her undergrad with a woman who became a family practice doctor, and she called in two scripts that took care of me, though it took several days for me to regain strength and that was right at the time that we were driving 600 miles up to Colorado for New Years.
WHEEE!
On to Part the Second!
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