Today we also met with our LLMD. We went into the meeting (with Jackson), uneasy about the fact that we’ve seen so little (if any) progress with Jackson in these last 4 months. Our LLMD had hoped to see some more progress out of Jackson, but reminded us how much we’re dealing with in Jackson’s case: parasites (just about gone), Lyme (making huge progress), PANDAS, mold (possibly?), methylation cycle issues, Marcons, and now, he’s found a viral component. He made me feel a whole lot better that we are treating what needs to be treated and to steer the course.
For the virus, he’s prescribed Valtrex. Valtrex is an anti-viral…THE anti-viral that Stan Kurtz (http://stankurtz.com/) used with his son, Ethan’s, recovery. I’m wondering if Valtrex could be a key piece of the puzzle we are missing in helping Jackson. In Ethan’s case, it took about 20 horrible days of regression to finally see some gains and progress…nonverbal to verbal! I’m a little nervous to start the Valtrex since things could get worse, but excited about the possibilities that Valtrex can bring. So far, with all the supplements, medications and everything that’s gone into Jackson’s body, he hasn’t had any major negative herx reactions. Will Jackson tolerate Valtrex? Will he go through some poop-smearing days as Ethan did? We will see!
Here’s what I’ve read about Valtrex from: http://gryffinstail.wordpress.com/tag/antivirals-101/ :
Die-off sucks. Yes, you probably already know but really, it can suck more with antivirals.
Each child reacts differently and some will get little to no die-off and others will think their child has been possessed by the body snatchers.
I’m sure you are on the edge of your seat, waiting for me to explain what to look for when you start. You’re in luck.
low grade fever
rash (sometimes it travels)
canker sores/cold sores
That’s all I can think of off the top of my head.
And that’s just from the antiviral. But again, severity is going to depend on the child. In my son, we only saw the low-grade fever, hyperactivity and his aggression was only raised slightly. But the whining! Good Lord, help me. It was a nightmare. It really made the die-off seem much worse than it actually was. When you wait so long to hear your child speak, you’re willing to listen to anything and never ask them to stop talking. This was tested in my house. Turns out, it’s not always true. You’re thankful, absolutely. But it wasn’t too far of a leap for me to go from “please talk” to “please stop whining!”
Thank goodness there ways to help get you through (and I don’t mean that appletini after the kids are in bed). A big part of that is to only start the antiviral/antifungal protocol 1 at a time. You start either the antiviral or the antifungal first, and then you add the other a month later. If you start the antifungal first, you might be able to get away with starting the antiviral 2 weeks later but not vice versa. Starting them both at the same time will almost always just compound the die-off (plus you want to know what’s doing what. Don’t forget to take copious notes! This is the perfect time to learn what your child’s yeast and viral symptoms look like because those will go through the roof during die-off or they’ll disappear. Either way, you can now trace those behaviors back to their root). Also, when you start, start at half-dose for a week to ease into it. It’ll help smooth the die-off so it’s not so harsh. And just so there’s no confusion, when you start the antiviral, start at half dose and when you add the antifungal, start it at half-dose. Go to full after a week. So if you are Rxed 500 mg/3x a day of Valtrex, start at 250 mg 3x/day for a week, then go to 500 mg. Discuss this with your doctor, of course, don’t take my word for it. I don’t have any medical acronyms after my name.
Activated charcoal. There is some debate as to whether you should go with 1 hour after any supplements and 1 hour before any supplements or 2 before and after. I’d just go with 2 just to be certain. But that means a total of at least a 4 hour window where you don’t give any supplements/medicine (charcoal will absorb it).
Motrin. A lot of the die off symptoms are simply caused from discomfort. Aggression, hyperactivity, those types of things. Like I said, die-off can suck. How many of you out there have taken an antifungal and felt just awful for the first few days it was working (and I’m going to go out on a limb here and say there are probably more females that have to take it than men)? Well, the same thing happens to your kids.
Water. Antivirals clear through the kidneys. Drink lots of water and that should help with the headaches.
Be patient. Die-off on the antiviral can take up to a month. I’ve even heard of a few that have gone longer. During this time, you may see gains through the die-off. Most do but a few don’t see gains until die-off is completely gone. Die-off from an antifungal usually only lasts a week or two.
Probiotic during the antifungal. Some can have loose stools or constipation from the antifungal. This usually rectifies itself after die-off is over but probiotics can help during. But you’re probably already giving them anyway.
Be observant. Watch your child like a hawk because you don’t want to blow things off calling them die-off symptoms when it could be a very real reaction to the drug (I’ve not actually heard of this happening but I can’t imagine it’s not impossible – I had a severe reaction to Singulair and just about went off the deep end). Don’t be afraid to call your doctor, that’s what s/he is there for, so call if you feel you should. Trust your gut. If you think it’s not die-off (or even if you think it mightnot be die-off), call your doc.
I will surely write daily Valtrex updates.