Yay, UC DAVIS MIND Institute! I <3 you.

Of course, this is not news to us biomed families but if just one thing could bring us some vindication for being called whack jobs, HERE IT IS. This is where we need to be looking to see why biomed helps some and not others. This is where we need to be looking to figure out where to start with our kids, who should start where in biomed and how it should be done. This is where we start looking to come up with an actual diagnostic effort and  protocols for mainstream acceptance. This is where we stop guessing and start proving.

Does anyone else find it telling that it’s an article from Australia and not the US?

US researchers’ discovery promises answers on autism

RESEARCHERS have for the first time identified two biologically different strains of autism in a major breakthrough being compared with the discovery of different forms of cancer in the 1960s.

Read the full article here.

After you read the article, come back and tell me in the comments what kind of autism you suspect/know your child has.

My son has immune and hormone dysfunction. It’s likely the hormone dysfunction is a result of the immune dysfunction but hey, that might be digging a bit too deep for the uninitiated. Let’s keep it simple for now.

What about you?


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!

Link to Dr. MIchael Goldberg’s NIDS presentation

For those that are interested in NIDS, here’s a presentation he gave recently. We no longer see him but I do feel that a lot of what he says has value. There are some things we just don’t agree upon but it’s always good to have information and decide for yourself.

Where to begin? Know your Treatment Protocols…

When I first started researching autism I had to search the web like a mad woman. I found a lot of information but it was scattered all over the place. I had bookmarks galore and I also relied heavily on many of the listserves. I remember thinking how nice it would be to have all that information in one spot so I didn’t feel like I was just blindly searching for something when I didn’t even know what to search. I’m hoping this will make someone else’s search a little easier.

Not all protocols work for every child. And then there’s the understanding that within most protocols are “mini protocols” that could possibly do wonders even thought the overall protocol wouldn’t. Finding the right protocol can be time consuming and costly so my suggestion is to not waste 5 years on a protocol that isn’t working. Give yourself 6 months to a year on a protocol and then reevaluate. Are you seeing any results worth continuing? Is there something you could be doing that you think would be helpful and aren’t? Are there labs pointing you to a direction you haven’t gone yet? Constantly reevaluate what you are doing to get the most out of any given protocol and give it a sincere chance. If it’s not working, move on down the line to another protocol.

Also keep in mind that sometimes you don’t get results from one thing until you do another. I’ve had many parents tell me that “x didn’t work and we gave up on it but then we did y and then revisited x and suddenly it was working.” Some things just need a foundation before you can build.

Protocols can be expensive. Many of the doctors don’t take insurance and many of the labs aren’t covered by insurance. But there is a glimmer of hope. Some do take some insurance but you’ll have to search them out. For the rest, you’ll find that a lot of parents are one their own trying to do the best they can without help. Medical reform is needed but that’s another blog topic. Here are some different treatment protocols below.

DAN! (Defeat Autism Now!)
The most popular and well known protocol is the DAN! protocol. This is the protocol that the recommends much of what you hear about such as the GFCF (Gluten Free Casein Free) diet, MB12, HBOT, chelation and more. It was created by the Autism Research Institute, a non-profit that has been around for 40+ years conducting research. You can read more about ARI and DAN! here.

They focus heavily on metabolic issues, gut and metals but they are starting to grow and implement more on the immune side but it’s a slow transition. Not all DAN!s are created equal so ask around for recommendations.

Yes, this can get pricey but if you go slow, you will discover ways to make it more affordable. I’ll post a blog on that sometime in the future.

To find a DAN practitioner click here.

NIDS (Neuro-Immune Dysfunction Syndrome) is almost entirely immune related. You can find more info here and here. This is the protocol my son had been on for almost 2 years and we’ve had great success although not full recovery. The basic protocol is antiviral, antifungal, SSRIs and the NIDS diet. There are only 3 places to see a NIDS practitioner. Dr. Michael Goldberg in Tarzana, CA, the Northern New York Autism Center in NY and they also have an office in TX. To my knowledge, if you go to NNYAC in either location you’ll be seeing Dr. Russell. There is a NIDS listserve that can be very helpful if you are considering this protocol. Dr. Goldberg does take some insurance and I’m not sure about NNYAC.

Dr. Amy Yasko bases her protocol on the expression of certain metabolic genes. It’s actually quite hard to understand on your own because if you are anything like me, you feel like you need a doctorate in biogenetics and biochemistry to understand what she is saying! Parents manage to push forward with it, though. It’s quite expensive but enough people have tremendous success with it and figure it out via her listserve to which she and other parents communicate and help. I’ve heard most people have to read her books about 2 or 3 times before they even start but many are thrilled with the results. Dr. Yasko does not see patients anymore so most parents are on their own unless they want to see (or have phone consults with) the few doctors that implement the protocol. Dr. Nancy Mullan in Burbank, CA is one that no longer uses the DAN! protocol and is fully Yasko and Dr. Rachel West in Santa Monica still implements DAN! but now also uses Yasko. A few other Dr.’s use some parts of her protocol. While most DAN!s are familiar with her protocol, most don’t use it so there are only a few doctors that actually implement her full protocol.

You can learn more here and her listserve can be found here. The store can be found here.

Pfeiffer Treatment Center
The PTC is similar to DAN! but they tend to focus more on the copper/zinc ratio. Not a whole lot to say here as much of it is covered under DAN! but do understand it is their own protocol, not a DAN! protocol. Very similar, though.

I must admit, I don’t know much about homeopathy. It would be a sad explanation to hear it from me! When parents start talking about homeopathic remedies it all goes right over my head as I haven’t even attempted to learn since we just aren’t using it but suffice it to say that many find success here. I know that they work under the premise that “like cures like” although it’s probably too simple of an explanation. I would caution that if you choose this route, make sure you use someone very familiar with autism. Get recommendations. Here is a link to a reputable place but I’m sure there are others. Google it for more info or a place near you.

Aside from the above protocols, there are many other types of protocols that are little more specialized. Yes, some of them could fall under other protocols as more of a “sub protocol” but they are good to know so I’m adding them.

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections)
PANDAS, in it’s simplest terms, is the overproduction of Strep antibodies. It’s based on the work of Susan Swedo and is starting to gain mainstream acceptance although it’s not quite there yet. I don’t have a PANDAS kid but I know of many so it’s always good to at least run the titers to check. More info on it can be found here and here.

Lyme Induced Autism
Some cases of autism are aggravated or even caused by Lyme. I don’t have a Lyme kid so I don’t know much about it but you can find more info on LIA through the LIA Foundation.

NAET and BioSet
NAET (Nambudripad’s Allergy Elimination Techniques) and it’s offshoot, BioSet, are becoming more and more used within the autism community. No personal experience but I hear a lot of good things.

Gastrointestinal Doctors
There are two doctors in the US that are acutely aware of autism and it’s GI issues. Dr. Arthur Krigsman at Thoughtful House and Dr. Buie at MassGen.

Stan Kurtz’s Anti-infection & MB12 Spray
This would generally fall under the DAN! protocol but Stan asked me once to put it on my “Introduction to Autism” file that I sent to people so I’m adding it here, too. You can read about it here, here, and here. Stan is also on the Board of Directors for Generation Rescue as the Executive Director.

I want to make sure that I take the time to say that just because a protocol isn’t mentioned on here, it doesn’t mean it doesn’t have value. It simply means that I either overlooked it, forgot about it or just plain don’t know about it and no one has ever brought it to my attention. Keep researching, keep learning and don’t give up. If a protocol doesn’t work for you, try another. And there will always be a section of people that do nothing at all and their children are fine. There’s no guarantee that any of the protocols will work and there’s no guarantee that if you do nothing your child will be okay. Do what you are comfortable with and do it as best you can. That’s all anyone can ask of you as a parent. Don’t give up on your children no matter what your choice because they aren’t dumb, mentally retarded or unaware. They are people and they do have feelings, emotions, and intellect whether they are able to express them in a way that you understand or not.