Tuesday, November 24, 2009

Biofilm

This is probably a new term for you so I will edu-ma-cate you first. Biofilm is a polyssacharide matrix that microbes develop to protect themselves. It allows them to survive in a less than optimal environment, AKA - a healthy body? These pests are smarter than us and always will be as long as we continue to use medical prescriptions to fight them. Biofilm is a sticky film that allows them to remain undetected by the body. So while we are doing all of our treatments trying to kill these little suckers, we see some progress, but then stopping the treatments proves to only result in yet another build up of the symptoms yet again.  So we know we probably have a biofilm issue at hand. Since the Flagyl antibiotics only addressed our bacteria issues for about two months, if even, both times we used it, we knew we had something more deep seated to deal with. This stuff has probably been setting up residency for a few years! We knew it was time for the BIG GUNS!! Hence, the biofilm protocol!

 The first step of this process is a few specific enzymes that poke holes in the biofilm by breaking down their cell walls which then allows the following treatments (natural antimicrobials/antivirals) to get in there and kill them while they think they are hiding. It's a process that takes time (months), but usually results in great long-lasting benefits....providing we are also removing the metals at play too! These things go hand in hand, microbes and metals protect and benefit each other.

Once we open the biofilm, we are essentially reactivating the body, because previous to this step, it was actually unaware of it's very well hidden intruders. This can result in a plethora of symptoms that can range from flu-like to stimmy and irritated. It's basically BIG die-off and the process requires a good mop-up step to usher out the toxins (like having a dead creature in your basement, eeeew, get it out, right? It's toxic), otherwise they will overwhelm the body (and the liver) and become neurotoxic in the process. So here is our daily routine now:

I am only doing the biofilm protocol once a day right now, but after 3-6 weeks, we will consider a second dosing schedule in the day. So essentially what I am doing is using the biofilm in the morning hours (getting the empty stomach is easier then) and then I continue with the dosing schedule we were using pre-biofilm in the later parts of the day, because, if we go more than 3 hours without dosing something, the yeast and bacteria start right back up. Then at bedtime we give hefty doses of probiotics to rebuild the good flora. More good crowds out the bad!

The "killers" as I like to call them (antimicrobials/antivirals) may be more than some kids can handle, but as I mentioned before, we get severe overgrowth pretty fast, otherwise. So while the biofilm is in place, I am hitting this stuff pretty hard and seeing results! Previously, if we went more than 6 weeks without Flagyl, we saw MAJOR bacterial symptoms (aggression, hitting, throwing, defiance, spacey interchanged with hyper, negative attitude all day, and a lot of emotions and crying).

We do a bit of rotation, because of leaky gut, so the food supplements along with anything that contains coconut (a #1 on his IgG panel) is rotated on a four day rotation.

1 - I keep the bottles of Klaire Labs Interfase (Important, NOT Interfase Plus, it has EDTA in it which is unsafe for mercury toxic people) and ViraStop (you could also use Lumbrokinase here which is GREAT for Lyme) with a cup of water on my nightstand since he comes to my room first thing when he wakes. This allows me to start the pre-food dosing asap. I give him 1 ViraStop and 2 Interfase caps on an empty stomach.

2 - When we get downstairs, I give him either his home made electrolyte solution or an apple cider vinegar drink made with warm water, baking soda and honey (depending on our rotation day). He drinks these right down on an empty stomach and looks forward to both of them!

3 - 30-45 min (I use the stove timer, lol) after the Interfase and ViraStop, I dose our "killers" (4-5 drops Bio-Alternatives OoO, 3 droppers full of NOW Foods OLE which is 300mg, 15-20mg Biotin, 3-4 drops GSE and/or Nystatin depending on yeast symptoms, and then we rotate either a full cap of Pharmax Caprylic Acid or a 1/3 of a cap of Natures Way Uva Ursi - this is a new add in for us so we are starting slow). We LOVE the Caprylic Acid and see a difference in him when using that on his rotation days.  A quick note about GSE here - In the two years since I've written this blog, we have learned that a few drops of GSE wasn't our ideal dose.  He is now on two Nutribiotic tablets (125mg each) PLUS 10 more drops.  I wish I tried this sooner, but working up slowly is also important for the sake of severe die off and liver tolerance.

4 - He takes digestion enzymes and two HCI (hydrochloric acid capsules), eats and has his supplements then I set the timer to an hour but anywhere between 1-2 hours is good.

5 - 1-2 hours after supplements and "killers", I give two PectaSol C by EcoNugenics to mop up. This is proven to also move metals. It's a Modified Citrus Pectin which interestingly our son does fine with considering all citrus was elevated on his IgG. You need a dr to order, but all I did was call and tell them that Dr. Woeller of AutismActionPlan.org (I am a member) suggested them and they let me order. It's expensive, $69 a bottle, but there are 270 capsules in a bottle. Everything we give seems to be expensive, ugh! I could be driving a brand new Mercedes, I tell ya!! Not even kidding...You can also use good old activated charcoal here though.

6 - I wait another 1-2 hours to start dosing our "killers" again and then we do that at 3 hour intervals so usually that works out to around noon or 1pm and again at 3-4pm. This is perfect for his school schedule this year, but I am seriously fretting about him in all day kindergarten next year.

7 - At dinner he has 4-6 ounces of kombucha (a fermented iced tea drink with enzymes, probiotics and B vitamins, it's the only way he tolerates the B vitamins!) and at bedtime, 3 Culturelle and 3 New Beginnings Probiotic Support which contains a good amount of Sacc B in addition to a broad spectrum (no-strep strain) dairy-free probiotic. We are doing well with these lately, I can tell by the way he wakes up the next morning. He is calm, happy and compliant.

So that is it, our routine, which now seems to be working pretty well. Sometimes we need to up our yeast protocol, especially when we are on a chelation round, but he responds well and quickly. We also do the epsom salt baths a few times a week, and I have recently added in a bentonite clay bath here and there to assist with the toxin die off. He gets various supplements three times a day as part of all of this, as well.

We had massive die off initially, probably for the first 5-7 days, but that seems to have leveled out, thankfully. I thought I would really lose it, but I stuck with the protocol, increased the PectaSol mop up a bit occasionally and sure enough, he has leveled out nicely, phew!! It's been a while since we have had a good constant without Flagyl. We still see some yeasty signs, as I mentioned, so we are working that out too. He's getting "bored" with school and I don't know, if that is related, but the teacher has been made aware so after the Holiday break, I hope he gets back into the swing of things. I have to say that this is the longest we have gone (8 full weeks) after ending the Flagyl, without major bacterial signs building back up!

I might also add that when I started this protocol with our 17 month old (who also shows signs of yeast and bacterial infections) we had the oddest BM and since he is still in diapers, I got a nice eyeful of a small compact ball of mucus and sticky green something-or-other, eeew! I have read that the biofilm is clear so I am not sure what the compact green stuff was, but it was all intertwined and weird, to say the least. Dr. Woeller suggested that it could just be a plug that was moved out by the protocol. It didn't even connect when I was changing the diaper, instead, at 5am the next morning my eyes popped open and I thought, "I KNOW WHAT THAT WAS..." AKA - biofilm response! Onward...

Friday, November 20, 2009

Bio medicine, just for the autistic?

I'd like to talk a little bit about bio medicine and something that tends to confuse many parents. Right now, much of the biomedical research being done is on the ASD (Autism Spectrum Disorder) community and the results achieved with biomedical treatments. Why is that? Probably because they are the most effected and we are reversing what was once considered a purely genetic and irreversible condition known as autism. But do I think these are the only people who would benefit from bio medicine? Absolutely not! We are seeing more and more research on bio medicine effecting those with autoimmune disorders like Lupus and Arthritis, Lyme Disease, and they are even reversing cancer! The rise of ASDs is an epidemic, so it's drawing attention and rightfully so. Twenty or so years ago, ASD afflicted 1 in 10,000 kids. Now? 1 in ONE HUNDRED at best! In the UK, it's 1 in 60!

So what is bio medicine, you ask? Well, let's dissect the word, it pretty much makes sense....bio, like biology and medicine, hmmm, ok so here is the medical definition:

bi·o·med·i·cine
(bīˌō-mĕdˈĭ-sĭn)
noun
  1. The branch of medical science that deals with the ability of humans to tolerate environmental stresses and variations, as in space travel.
  2. The application of the principles of the natural sciences, especially biology and physiology, to clinical medicine.
So we are treating illnesses with nature, it's that simple. Anyone, wait no, EVERYONE can benefit from that.

Where we seem to get hung up, as parents, is hearing the term autism used in conjunction with this form of treatment. We conclude that, if we need to use bio medicine to help ourselves or our kids, it MUST mean they are autistic, right? WRONG! I think the only reason we see this connection is, because this disorder is single-handedly bringing bio medicine to the forefront of medicine. When we were first looking for natural ways to address what was going on with Grayson, I would see the word autism and turn around, change my path, just to come back to this dreaded word yet again. I kept saying, " but I don't get this, he's not autistic"....and no, he has never been diagnosed as being autistic, but why do I keep ending up here? Because it's working for kids of ALL degrees. Because it's basic biology people!! Remember, something as common as ADD is actually on the autism spectrum, and I repeat "spectrum".....there are all degrees of illness associated with this particular disorder. Label or no label, what it comes down to is there is a set of "symptoms" that come with the illness we are dealing with and whether they put your child on the spectrum or not is not what is important. What IS important is that you recognize these symptoms as something that needs attention. So is my child autistic? No, he's not. He's social beyond words, he's funny and he reads body language better than some adults I know, he is bright and very aware of his surroundings. Did he have symptoms of an autistic child? He sure did! He hand flapped, he started to loose eye contact at the worst of it (and still does when his health takes a turn for the worse), he has tantrums that aren't reasonable, he used to line up cars incessantly, he was and still sometimes is a sensory seeker (when his gut dysbiosis flares), he bounces off the walls and couches, he traces outlines of our cabinets with his hands, he has moments sometimes DAYS of being highly emotional....does any of this sound like it could be your kid? They sound like normal childhood behaviors, but what really is normal? Are we becoming accustomed to these behaviors over time, because they are more common and because the child isn't "autistic"? And when you clump all of these "behaviors" into one child, do they take on a different definition? Yes, they become symptoms of something that is very hard for parents to grasp. It's not necessarily autism, because what is going on inside of an autistic child's body can also go on inside of a neuro-typical child, which will then cause the very same symptoms that are often seen (to a more severe degree) in autistic children. I truly believe that the severely inflicted children who are at the far end of the autism spectrum are just the most fragile kids alive. Everyone handles things differently. Just think of how you handle a cold, your neighbor might have completely different symptoms with the same cold strain and allergies, you have one to mold and your cousin reacts to dogs, your child might react to milk!....These kids can't handle toxins, they cannot handle the pesticides, the heavy metals, the plastics, the cleaners and bleaches, the injections, the viruses, the EMFs, the radio frequencies, the chemicals in mattresses and fire retardant pajamas, the parabens in soaps and lotions and even TOOTHPASTES.....they are breathing, absorbing, eating....toxin after toxin and what is the one common thread they all have? More than 90% of these kids have low glutathione. This is a naturally occurring peptide in the body, a natural antioxidant. It drives our ability (or lack thereof) to detox these toxins that we encounter increasingly every day. You might be interested to know that Tylenol (our teething best friend at one point, right?) reduces glutathione. So a child who might have already been on the brink of low glutathione, give him or her Tylenol and you have just enabled his or her body to hold onto more toxins. Is it that simple, no it's not, there is a lot more that goes into this vast system, but this is one of the many things we are seeing more and more often with children these days. Do parents realize this when they reach for the Tylenol, because they just want their poor achy child to be comfy, no they don't! Do they realize that the reflux and ear infections are commonly from dairy allergies, probably not! Do they know that colic and loose stools often accompany gut dysbiosis and that their children probably need probiotics, I bet they don't!

So I am going on and on, and it's so easy to do once you get into the biology of it all, because it's all so connected, but my point is that every child could be effected to some degree. I see children in grocery stores and I think...."I wonder, if his parents know that those behaviors mean something more than "he's a boy". Having a child inflicted with a weak immune system that allowed him to accumulate more toxins than he can handle has made me hyper sensitive to those signs. They are universal and I believe that at some point, knowledge will expose the truth about our children's health. I honestly believe that we are at a state of emergency with our kids. If we don't start eating differently, cleaning our homes differently, reading the ingredients we put into our children's bodies, using water filters, washing produce, buying organic meats, we are going to see an incredible increase in autoimmune diseases in this generation and the generations to come. It is a documented fact that babies today are born with over 500 identifiable toxins already in their system, as tested in the umbilical cord fluids. So I encourage you, when you see a behavior that troubles you, or a rash that a doctor can't tie to an illness, or even a continuing sleep disturbance, consider this possibility. It's time to learn what we can do for our kids and their futures.

So now you are probably thinking, ok this is crazy, YOU Are crazy and what do we do about it anyway?! Well there are some really basic and simple things we can all start doing, like always washing your produce thoroughly, even thick skinned produce which will likely infect the protected inside when you slice through the dirty bacteria laden skins, you can shop organic as much as financially possible, you can clean with something as simple as vinegar and water, it's so safe you could drink it! And what about nutrients, get your kids tested for nutritional deficiencies, supplement with things like probiotics (always) and omega 3s. Switch to natural toothpastes without fluoride (you do NOT need fluoride for dental hygiene even though successful marketing schemes will have you believing that), replace your soaps, shampoos and lotions with natural and organic products to avoid the nasty chemicals our bodies don't know how to process (your skin is the largest organ of your body and you shouldn't apply anything to it that you wouldn't be able to eat), eat a healthy wholesome food diet and watch for reactions to foods (which isn't always easy since you can react up to FIVE days after ingesting a food), avoid ALL preservatives and colorings. If you can't pronounce an ingredient, avoid it! These things are simple, they take some time and thought, but the health of your child is a stake. If this doesn't fix the concerns you might have, keep searching for your answers. They don't call us Warrior Mothers for nothing!

Friday, November 6, 2009

Doctor doctor on the wall

I swear that is where I feel like our doctors are these days, posted like a trophy on the wall. "Look, I am a degree"...but where is the continuing education, where is the common sense, where is the research? I know, I know, I have been reminded by even my own pediatrician that they do NOT prevent, they are taught to treat illnesses, to be reactive, not proactive and they use medicine, period. We are so torn between going to our standard pediatrician who is covered by our insurance, but doesn't know a thing about what we are going through or going to our DAN! doctor who is a holistic doctor and handles many cases of children on the spectrum through biomedicine, BUT insurance will not approve any of his tests or treatments, they are considered "experimental", hence making the appointment ineligible for payment too. Until a parent is faced with these frustrations, you could never ever know how frustating it is to know that your child will only get better, if you are financially capable of fronting the cost for the doctors, many tests and the long-term treatments necessary to correct his or her health problems. How do you think it would feel to know that the only thing standing between you and your child's wellness or recovery is money, and a lot of it? Frustrating to say the least, unfair at best. On top of it, the parents need to highly educate themselves on the treatments, because there are SO many biomedical protocols out there. What works for one might not work for another, so in addition to spending a fortune, imagine spending a fortune on things that don't work so you end up with bottles upon bottles of full supplements that didn't work, just to move onto the next $40 bottle of something, that maybe doesn't work either! It's a never-ending battle and we feel SO alone since we often can't just pick up our phone and call a ped for advice. They wouldn't even run a viral titer so I can see if he has developed antibodies to the vaccinations he DID get.

Since we are caught in this position, I had some standard blood tests run on Grayson just to see where his health status is, at least it's covered by insurance. He doesn't have anemia, his hemaglobin is good, thyroid good, D levels are great, but his CBC showed elevated platelet counts. The range is 150-400 and his count is 532. I have done some researching and the scary things like leukemia aren't even an option, I won't even give that a thought, but some things did pop out at me on a few web sites. I saw mention of irritable bowel disease and clostridia as possible links. Now THIS would make sense. So while I am still uneasy at the results, I am somewhat relieved to see that the very thing we are battling could be at play here, again, supporting every route we have taken, confirming to me and anyone else who wonders about holistic quakery, that this autoimmune issue is, in fact, real! I am not trying to find something wrong with my child, I don't WANT him to be like this, he just is. The recurrent medical findings confirm that my child is not a case of hypochondria, he is ill, very ill on the inside and I intend to fix it, even if I have to do it alone! If your child had a heart disease, you would do everything, and more, in your power to help him, this is no different.

Wednesday, November 4, 2009

Long time no chat

Wow, it's been months since I have updated the blog. School started and things got crazy! As the old saying goes, "No news is good news" and this is true in our case! We had such great changes with the Flagyl in July and then in a matter of months, we were seeing an increase in the bacteria-behaviors like anger, aggression, defiance and the resurgance of sensory issues occasionally. So back on the Flagyl we went...I wanted it addressed before school started and what a great idea that was. Last year when he started school, he was a mess, an absolute mess with hitting, very vocal meltdowns, temper tantrums and acting out. This year he is the perfect dream student! He is older too, of course, and he loves helping the younger students which I hear he does very patiently...that's my boy! We have been off the Flagyl for about a month and so far so good. We try to keep the bacteria at bay naturally with daily Olive Leaf Extract, Oil of Oregano, Biotin, we rotate in Capruylic Acid four days a week and I recently bought peppermint gel caps, but I haven't really gotten them into the action yet. I am still researching that front. Then at bedtime he gets four doses of probiotics - two dairy free Culturelle and two New Beginnings Probiotic Support which contains Sacc. B.

We are still chelating and just finished with round 14. We had a few blunder rounds....forgetting to wake up for a middle of the night dose, oops, so we had a few do-overs, ha ha ha. It's going really well though. He handles chelation great, comes off the round fairly well, with just a tad of the high sensory stuff like shirts bothering him and pajamas not fitting right, the covers on the bed are annoying and won't lay right, but that is fleeting thankfully. If you read my earlier posts you see how much of an improvement this is! I have to say that since starting chelation we have seen AMAZING and permanent changes in him and of course keeping the bacteria down makes Grayson the perfect child so that helps. He was never able to peddle a bike, he hated even trying, it was just exhausting for him. Suddenly one day he hopped on and peddled around in circles, whizzing around me like a bee. That just came out of left field. He has no problem walking beside us when we are out now, he used to cry that he had to be in the shopping cart or stroller and that he was just too tired to walk. He still prefers the stroller some days, but he doesn't fight us if we say no. I believe his mitochondrial function is improving based on these changes. A silly change I just noticed yesterday...He is normally afraid of bugs, won't go near them, but was always intrigued by them. His little brother who is 16 months old has no problem grabbing a hold of the elder box bugs as they sun themselves on our deck, but Grayson would always partake in the action from a distance. Last night the baby noticed one in the house and next thing I know, Grayson is holding the bug in my face asking me if I want it. Talk about a shock! I was SO not prepared for that, ha ha ha. He had the bug crawling all over his arms and body, giggling from the tickles. I have never been more excited to see my boy acting like a BOY! He's always had these fears of things that most kids relish in, getting his hands dirty, birds, frogs and bugs. I am all for it, get dirty, get wet....you can change and wash clothing, life is too short to not enjoy being a child. And I am enjoying watching it!