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Tuesday, January 4, 2011

Antiviral Therapy 101

At the request of several people, I'm going to give an overview of antiviral therapy as I understand it. I'm not a doctor. This is all based on my own research, helpful people and learning from doctors that are in the know on viruses. I'm doing this so you may talk to your own doctor about it and discuss how you would choose to proceed. And selfishly, I'm also doing this so I don't have to answer the same questions over and over.

Feel free to print it out and take it with you if you need a guide for your discussion. Also, leave any questions you have in the comments and I will try to clarify any areas of confusion. The more questions you ask, the better I can make this post.  It's quite a long post and I considered breaking it up into parts. I decided against it.

Now on to the therapy.

The first question I get is: "How do I know if I have a viral kid?" The answer to that isn't cut and dry. In my son, he got random fevers with no other symptoms; he was always sick, though, when he didn't have random fevers. For the first year of life, he was in the peds office every month. By the time the year was over, I had quit taking him to the ped because the answer was always the same: it's just a cold. He was constantly battling bronchitis, although I must say, we never got antibiotics for it because it was always explained away through the cold.  That was, at least, one positive that came of it.  He also had roseola, which is common in children. It starts as a fever for a day or two, followed by a rash and no fever. It is a herpes virus, HHV6, which is in the family of viruses that antiviral therapy usually targets. If your child has had EBV, CMV or chicken pox, you might want to consider antivirals as a possible avenue.

On the flip side, kids that never get sick.  Kids should get sick. That's part of how the immune system works and grow.  If your child hardly ever gets sick and you can count on one hand how many times it has happened, then that's a pretty strong indication that there is immune dysfunction.

Frequent cold sores/canker (or if you prefer the ancient spelling, chancre) sores.

Random rashes.

Visual stims.

History of miscarriage (for the mom, of course).  You'd be amazed at how many miscarriages are immune related.

There are a few other signs that I can't remember off the top of my head right now as I write this but I will add them as I remember.  Right now, I'm just trying to get this in ink (pixels?).

"What about tests?" you ask.  There is no reliable test.  You should definitely pull titers, though.  You should pull HHV1-6.  This will not get you a 100% answer (let's be honest, how often do we get that anyway?) unless it comes up high.  Most mainstream doctors will tell you that these are pointless because it just means they have been exposed.  Yes, I've heard that before. Sounds pretty similar to the vaccine titer draw answer. Like the ones my son had a reaction to and 3 years later still had 50x+ over reference range (Hep B).

And the good news about these labs: no specialty labs needed. Your local lab will do. And while you're at it, you might as well pull T&B Lymphocytes/NK Cells, a full immune panel w/ subclasses and a CBC+Chem (although that one is likely a given). And also, whatever vaccine titers you want.  You could also pull ANA and AntiDnase to check for PANDAS and pull Mycoplasma -- and if you're feeling really investigative, Toxoplasmosis, on the off chance it's positive (it happens).

Sorry.  I can't help it. I have a compulsive need to start listing labs to run at any opportunity.  I shall restrain myself from continuing now, I swear.

Here is a list of studies showing what these viruses can do just in case you might consider that these mainstream docs are right (and who knows, maybe they are.  Again, I'm not a doctor but I'm certainly able to look at my son and see what he's responding to.  I have two eyes and like to think I'm fairly intelligent):

And that's just from a quick PubMed search. Imagine what it would be with a lot more digging. Decide for yourself if titers only mean "exposure."

What happens if you come up negative/normal on titers?  Well, I'm glad you asked. Many kids come up negative but start antivirals anyway because they are sure there's a viral problem. And many of them are right. What they find is that the titers shoot up after 3-6 months of antiviral use. I've heard the rare occasion where it took 9 months. The viruses are in hiding and the body isn't recognizing it until you make it with the antivirals. I'm no scientist. I can't explain why or how this works. I can only tell you that this happens with relative frequency in the pool of parents I'm in contact with.This is one reason why pulling titers every couple of months is important. Google "stealth virus" and you'll likely get a much better explanation than I can currently offer.

Another reason why pulling titers is important:  you need to know what is happening. If the titers aren't moving, you may need to switch antivirals. If the titers are moving, then you know you are okay and it's doing its job. If the titers start to climb after going down, you then might want to switch antivirals. If the titers stall, you may want to switch antivirals (or not). There's a whole lot of finessing and working with the information you have that needs to be done. Too many people quit too early because they haven't done enough investigation.  It's never as simple as just taking a pill.  Knowing what's going on inside is as important as knowing what's happening outside. And Valtrex is not the only antiviral and yet I still get a lot of people thinking that somehow, if Valtrex doesn't produce a result, they should just give up on it.

First, antivirals are very rarely short term. There's a lot of work to do to get the immune system where it can tolerate having these viruses on its own. Second, trials are not 2-3 months.  See the above paragraph to understand why. At minimum, you're looking at a 6 month trial but it's likely going to be longer if you're doing all the titer pulling, monitoring, switching (if necessary), etc.

"But HHV-6 Foundation says Gancyclovir is the best to treat the herpes virus!"  Well, yeah, if you're an adult and understand the risks and is willing to take them. Gancyclovir is pretty toxic and best only used when absolutely necessary - like active infections that necessitate its use.  We don't use it because of safety concerns.  You don't want to get rid of HHV6 only to have a blind child because of retinal detachment. Or worse.

Much of what we do to help our kids is considered fringe medicine. Why, I'm not sure, but that's another soapbox. My point is, you don't want to make antiviral therapy dangerous. While mainstream doctors think it's "quackery," they generally don't feel like any of the antivirals we use are particularly dangerous. My former ped (that has zero belief in any kind of biomed) had this to say when I told him our autism specialist put my son on Valtrex:  "Well, it's harmless. I don't care." Gancyclovir would have garnered a much different response, and with good reason. Try to balance the "accepted" with the "unaccepted" methods because while you want to do all you can, it's always better to be safe than sorry. Keep some common sense in all of this (at least, that's my opinion). The others might not be as effective but they do the job and with a lot more safety.

When your kids are old enough to make a choice of their own, they can decide if it's worth the risk.  It's not up to you to choose something like this for them. Your first priority is safety because, however the severity, autism isn't going to kill them.

The next question is: "Why do I need an antifungal?" The answer is fairly simple. Antivirals shift the immune system from TH1 to TH2 cytokines. What does this mean? TH1 is where the bulk of the fungus fight lays in the body. So when you shift to TH2, you need support to fight off fungal infection.  Here are some studies:

And remember that when using systemic antifungals (you want to use Diflucan or Nizoral, basically an azole), you must monitor liver function. These clear through the liver and can raise liver enzymes, which you don't want - read that as: it's very bad (Valtrex, Famvir and Acyclovir clear through the kidneys, in case you're wondering).  Should you have high enzymes, your doctor can tell you how to proceed. It usually involves stopping the antifungal altogether until the enzymes return to normal and possibly trying a different one or a lower dose or both. If they still rise again, it's possible this isn't an option, which will leave you in a position of having to stop antivirals because of the antifungals or trying to go through antivirals with no systemic antifungal. This typically doesn't work out so well but I've heard of a very few cases where it did with lots of natural antifungals, non-systemic antifungals and strict diet. Long term high liver enzymes can cause liver damage. As long as you monitor liver function, you shouldn't need to be concerned with it because you won't make it to long term high enzymes.  You'll catch it right away.  I can't stress the importance of monitoring these.  My son, in the years he's been doing antivirals, has not had a problem with liver enzymes, but it does happen to others so make sure you monitor.

So now you ask how to start.  These dosages should most definitely be discussed with your doctor.  I have to remind you of this because I am not a doctor. Again, this is all based on my experiences and what I know of other families and where the best results have been found.  I have nothing to offer in the way of scientific evidence of this, only that this is true for those I've spoken to.  Completely anecdotal, as they say.

A word on dosages before we get to them:  There are no guidelines. There is no "normal" or agreed upon therapeutic dose for our purposes. Here's what I've been told by doctors and the like:  There is no dosage information.  You look at the pediatric dosages and work within those parameters.  The dose changes with age.  You go from pediatric dosage to adult dosage at the appropriate time based on the drug's dosage information.

Valtrex:  Younger kids under 35lbs usually use 250 mg 3x/day.  Some say up to 50 lbs others, don't.  (My son was around 35 pounds when we went up to 500mg and it was awesome, he's still on that amount now at 7-years-old.) Then you go up to 500 mg 3x/day.  Now here's where the disagreement comes in, some prefer only 2x a day.  I can tell you that everyone that I know that has gone up from 2 to 3x a day has had better results.  But I'm also not a walking encyclopedia of everyone that has ever used Valtrex.  Some doctors simply don't think 3x a day is any more beneficial.  I would say look at my son but hey, they might have 50 kids that did better on 2x day than 3, for all I know.

Famvir:  The dosage is equivalent to Valtrex.  Your doc should know how to do this.  (Update:  When I say equivalent, I do not mean that the actual dose is the same, only that the determination of dose is the same.  The actual mgs should be appropriate for the drug. Ditto for Acyclovir.)

Acyclovir: The biggest problem I see here is that this needs to be dosed more frequently (5x a day).  I can see your shock.  Yes, I know, 5x a day is hard with school and such.  But your doc can write a note and you can have the school dose it.  Others think 4x a day is sufficient. Others even go so far as to say 3x a day is sufficient because they only dose Valtrex at 2x a day.  I can't tell you who is right.  I can only tell you that 5x a day was the bomb in this house.

What not to do on antivirals:  Skip doses!  Do not skip doses if you can, in any way, avoid it.  Skipping doses leads to viral mutation.  Antivirals work by inhibiting replication.  Once you start taking it erratically, the virus starts replicating and mutation can occur.  Once mutation happens, you get resistance.  Same concept as antibiotics and we all know that antibiotics lose their effectiveness because of mutation.  DON'T DO THIS.  If you have trouble believing me, just google "viral mutation antivirals."

You can only use one of these at a time.  You can add Immunovir (Dr. Cheney's protocol) to any of these at the same time. Dosing of Immunovir is very specific as it is based on a pulsing system, where the dosage changes as you are on it. Sometiems you are x dose, sometimes, y dose and sometimes none at all.  We've not done Immunovir but the dosages can be found here:

You should discuss this with your doctor because I don't know if this amount is the same for peds. It's not technically an antiviral but an immune modulator.

One thing to note, Immunovir is very expensive and is not sold in the US. You have to buy it from Canada or overseas.

There's also LDN (Low Dose Naltrexone) which helps to balance TH1/TH2 cytokines and it is also not an antiviral.  Dr. McCandless has been the spearhead in this therapy.  It's typically given at night as a TD cream and no more than 4.5 mg as anything over loses it's immune benefits and starts to become what it was originally intended to do, which you don't want.  My son was accidentally given too much by a babysitter and went bonkers for a month.  It's not toxic but Naltrexone was developed for a completely different purpose so make sure you stay within her guidelines.  Along with the immune benefits, people typically find social gains (which makes sense: if you feel better, you're more functional).

And there you have it. This is the gist of the prescription antiviral therapy. Naturals will be another day and I must admit to being less versed there (naturals have never done much in my house).  But since we are on the subject, a good thing to note is that herpes viruses tend to thrive in an arginine-rich environment and poorly in a lysine-rich environment.  Limit arginine and increase lysine, either through food or supplementation.  Here are some links but there are many, many more on PubMed.  Search "lysine arginine herpes."

Hope it all helps and feel free to comment.  Let me know if there are any dead links.  I'm pretty sure I checked them all but I'm a bit cross-eyed right now. Now it's time for me to rest my poor eyes after such a long post!

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