Immune Dysregulation

A Mouse Model for the Immune Dysregulation Subtype of Autism « Lisa Ackerman – Real Help Now.

I can’t really tell you how much I wish this were more well-known. I know that I can’t make anyone else really feel the same way, either. Not in the meaningful way I’d like, at least. I don’t think anyone can feel it properly unless they’ve been there.

The medical community might think it’s not worth exploring but try asking the mom that had a miscarriage two months before getting pregnant with her ASD son. The one whose miscarried pregnancy was completely not right in every way from the very start. The pregnancy that was likely miscarried for some sort of immune dysfunction.

The bad pregnancy that probably affected the pregnancy immediately following it two months later.

Whatever happened to my immune system happened to him. He was born with those immune problems and spent the first three years of his like always sick. Vaccines (especially the Hep B) played such a large role in keeping him sick and making him sicker. Each shot make him slip further away.

I find myself having many of the same issues but I’m older, I’m not developing and learning and becoming a person. I already know how to behave appropriately so when these issues arise in me, I already know how to handle them, or at least control them. I already know it’s not normal.

He was an infant with no prior knowledge. He was a brand new being and all these things were imprinting in his brain as being normal.

And now his immune system is shot and his viral titers are crazy. He will not likely ever be able to stop taking antivirals and antifungals. It’s just an unfortunate reality. His recovery is completely reliant upon them. Without them, his ASD symptoms return. It’s been proven over and over in him. Take antivirals and symptoms disappear. Remove antivirals and symptoms return. We’ve replicated this scenario every year.

I’m not sure how much more proof anyone could need. You don’t even have to believe that he has immune dysfunction. All you need to do is believe that antivirals clearly improve his ASD status. He goes from mostly recovered while on it to not at all recovered when off. We can do this over and over and over and over. There’s obviously some kind of correlation that should give any doctor pause.

And yet I can’t get many western medical professionals to “get it” and understand autism is more than a set of psychological symptoms. We’re fortunate that we’ve got a wonderful ped and a wonderful DAN doctor. But it took us a long time to find a doctor that looked at the results instead of towing the party line.

Medicine should be progressive. We should be open to learning, not pressured by organizations and companies with an agenda.

These are the types of studies we need more doctors to read. We need more doctors that will employ critical thinking skills instead of looking up the same tired answers in a medical book or rehashing the same biased information from what has been proven many times over to be biased journals.

Maternal (possibly even paternal) immune dysregulation should matter. Immune dysregulation as a subtype of ASD should matter.

Antiviral drugs may slow Alzheimer’s progression The University of Manchester

Antiviral drugs may slow Alzheimer’s progression The University of Manchester.

Fascinating stuff.

Antiviral Therapy 101, Part 3

I was asked why there is a concern with viral mutation if the dose isn’t high enough.  I thought I would share my answer.  Here it is:

My explanation for this is long, bear with me. 

I can’t give a full-blown scientific explanation but I can try to explain it in layman’s terms as I understand it.  Now, keep in mind that this is all from Dr. Goldberg.  I don’t know why DAN or other lower dosing protocols don’t feel the same way so I have no way of even guessing if they may be wrong, right, or somewhere in the middle.  My own DAN even thinks that 2x is usually sufficient with no viral mutation but is not opposed to 3x a day and does see benefit.  But I can guess why they might think 2x a day is fine, and that is half-life, which is the basis for all medicine dosage.

We’ll use Valtrex as our example.  The half-life of Valtrex is approximately 4 hours (some studies say more, some say less so 4 is about what I call the average, again, no science involved in my conclusion on that).  And also understand that when looking at half-life, the amount of drug in the system doesn’t simply drop in equal numbers by the hour.  You don’t start off taking 1000 mg and in 4 hours you have 500 mg in the system and in 7 hours you have 250 mg.  And this is probably why there is differentiation in results of half-life, there are other factors that come into play.  Again, I’m not a scientist and I have no idea how half-life really works as a function.  I only understand it as a concept.  Half-life simply means how long it takes for half the medicine to be gone from your system.  It doesn’t necessarily mean that that is half the time it takes to leave your system.

But before we go on to why half-life is important, we need to look at how the medicine works.  It works by inhibiting replication.  Different antivirals do this in different ways but this is the outcome:  viruses can’t replicate.  

Viruses, are not living organisms, just strands of DNA or RNA with a hard outer shell – they don’t even qualify as being a single-celled organism.  Anyway, they inject themselves into host cells and hijack the replication system, encoding themselves into your DNA (maybe not exactly like this but again, layman’s terms) and that’s how they replicate.

Antivirals stop this process but they only work for as long as the drug is in the system.  I’m not sure what the threshold is for how much is necessary to have in the system for it to work.  Could be 500 mg, could be 5 mg, I don’t know.  But think of it like this.  We know there are thresholds for something to work.  We know that underdosing an antibiotic will not kill the bacteria you are treating.  The same applies to supplements.  If you take 5mg of Vitamin C a day, it’s not likely going to do anything but waste the time it takes to take the capsule and your money buying the bottle.  There’s no effect until you reach a minimum amount of vitamin C a day.

So now we get back to half-life.  You want to keep enough of the drug in the system to maintain a workable dosage in the body.  In NIDS, they want to keep a higher amount to ensure it’s inhibiting replication.  Here’s what I think might be going on with DAN.  Because the half-life is about 4 hours, they may be assuming that every 8 hours is sufficient, they aren’t concerned by the minimum threshold amount for it to work.  They just want you to take it at about the time the drug is almost completely out of the system.  NIDS isn’t taking that chance.  It exponentially increases the amount of drug in the system so that by the time you go to bed, you have enough in the system to make it through the night without running out.  (Now, keep in mind that I said I don’t know the mechanics of half-life.  So I say exponentially but I don’t truly know that that happens or the mechanics of it.  It might not be exponentially increasing the amount of drugs you have in your system, just like it does’t exponentially decrease.)  With DAN, you are taking it once in the morning to get you through the day and then once in the evening to get you through the night.  

Now, in my mind, if the life of a drug is approximately 8 hours (could be more, could be less because remember the above exponential problems we have, but we are just going to assume 8 for the purpose of trying to explain).  There are 24 hours in the day.  Taking it twice a day only covers 16 with a possible extension of maybe 4 hours but I find it hard to believe that it will cover a full 24 hours).  In 3 times a day, you have overlapped dosage before the dose runs out, so there is more in the system and this extends the length of time it’s going to be in the system, hopefully covering the full 24 hours.  Now I could be totally wrong in my understanding of this.  I do not claim to have the answers.  It’s just my understanding and my working my way around the information I understand, which granted, I may only think I understand.

So how does this affect viral mutation?  Simple.  Viruses mutate.  When you allow replication to restart, that gives them an opportunity to mutate because that’s when mutation occurs – replication.  The same is true of anything.  The cells in your body don’t just mutate as they are in your body all whole and complete and doing their job, they mutate during replication.  The same is true of bacteria and the overuse of antibiotics.  

By dosing 2x a day, you are leaving a gaping window of opportunity for replication.

Here’s the thing about mutations.  Everything mutates, viruses, bacteria, cells, DNA, everything.  New flu strains come up every year, babies are born with genetic defects, etc.  Viruses aren’t actively thinking, “I need to mutate to form a resistance to a drug.”  They just mutate.  And because of the specificity of how antivirals inhibit replication, they can mutate themselves into drug resistance.  Antivirals can work simply by changing one little tiny protein that disrupts their current method of replication.  One mutation that doesn’t involve that protein and it’s resistant because antivirals are so specific.  Any tiny mutation could lead to resistance.  And the less complex the thing, the more significant the mutations can be.  This is why you don’t see babies born with six toes every single day, in every single hospital. We are too complex and mutations within us aren’t always so major or even remotely significant.  

There isn’t much info on antivirals, stealth viruses and mutation with autism, of course.  Where you tend to find the information on viral mutation with antiviral use is in the places where it is life threatening, namely – AIDS and other immunocompromised illnesses that have any potential to be fatal.  Most of the research done in this area is on AIDS patients.  Typically, when AIDS patients find that the antivirals don’t work – it’s not always because they are dosed wrong, but because as patients, they aren’t taking it as directed.  They are skipping doses.  Of course, that’s not the only reason, but it is major reason and a very important reminder that one must take these drugs appropriately if they are expected to work.

Is DAN right in 2x a day, is it sufficient?  I can’t say.  I can only tell you that this is how I’ve worked it out in my mind and I tend to think that 2x a day is generally not sufficient.  Since there are kids getting benefit from it at 2x a day is simply more proof that we just don’t know.  Doctors Rx antivirals as low as 1x a day for some illnesses.  So the answer is really still a mystery to me no matter how I work it out trying to apply logic when I really don’t know all the facts.  But this is the conclusion I came to.  And this is why, even though I no longer see a NIDS practitioner, I still choose to follow the NIDS dosing.

I have no idea if that helped or not.  And if anyone has anything to add or correct or clarify, hop on pop!

So that’s my story.  I’m not sticking to it if you have something better to tell me.  You know where the comments are and my mind is always open.

Antiviral Therapy 101, Part 2

Now that you know the gist of the protocol, here are some little tips when embarking on this journey.  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
increased stimming
rash (sometimes it travels)
increased OCD/anxiety
canker sores/cold sores
headache/audio sensitivity

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.

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!