Grayson is currently in managed recovery with no more of the above symptoms. They are GONE! We know we still have a long healing path ahead of us, because he can't sustain without the supplements and antimicrobials, and he regresses slightly when he is sick or maybe he's just like the rest of us when we are sick, impatient, cranky and tired. A child doesn't have the filter to control what they think so it comes across as lack of control when it may just be normal sickness response, FINALLY!! There was a time when he never got sick, hypo-immunity)
I bet you are wondering why we would need to bring the biofilm protocol back then. Well, it's not for Grayson, it's actually for Gavin! He has been catching cold after cold since before Thanksgiving. When he is sick, he is completely unbearable to manage. He has never been a sensory kid like Grayson, but when he's sick, his clothes bother him, sleeves and socks, his coat bothers his sleeves (figure that one out) and even food textures become an issue suddenly. His mood is volatile constantly, he looses speech only screaming and yelling for communication. He is irritated 24/7!! He has had bloating and the red anal ring the entire time he's been sick as well. I tried increasing his antimicrobials with no success.
Then it dawned on me....BIOFILM! If it worked so well with Grayson, it should also work with Gavin now. I only started it a few days ago and the results are astounding!! It's bringing back so many memories from using it with Grayson, but it's working SO much faster! He immediately began having army green BMs which is always a sign of bacteria die off, yippee!! A few of them even had mucus with them, which we never see. The red anal ring is gone, just like that!
It's like we flipped a switch on in his brain! He is speaking in full, thorough sentences, including following through with conversations. He listens, responds (even uses "yes" instead of "yeah" or "I did" or "I didn't" instead of just "yes" or "no") and carries through to the end of the conversation calmly and appropriately!! He is using manners on his own, he is cleaning up messes without being forced, he even played in his room alone for over an hour this morning, reading books and playing with trains. His belly is down, he's patient and cooperative, and best of all, he is HAPPY again!! Nothing makes me happier!
Today he did puzzles of the Unite States, puzzles he has never even seen before, very hard puzzles with a lot of small pieces. At first glance, he immediately noticed that a piece of the puzzle (a state) was MISSING from the pieces laid out in front of him. He pointed to the puzzle board and said, "This one isn't here". Unbelievable!! He is absolutely amazing me right now. To go from the things we were seeing just days ago, to this, it's clear that the biofilm protocol (with the addition of Lauricidin to his natural antimicrobials) is solely responsible, because nothing else has changed and he is even still sick with congestion and a runny nose.
There are times when we need to go back to basics and for us, that means reinstating protocols we have used successfully, in the past. Since we have used this with Gavin in the past, as well (when he was MUCH younger) I expect it will work it's magic faster this time around, with lasting results hopefully. All I know is that I will take what I can get, the vacation from the screaming alone is enough to keep me smiling, today anyway. =)
12 comments:
What's the biofilm protocol??
Good question Janice. If you click on the blue "biofilm" words above in my blog, it will link you to the step by step protocol.
I'm so glad you are having so much success (again) from biofilm. We have never actually tried it here but both kids have crazy high Clostridia so I think we may give it a try over the break from school. Thanks again for all of the detailed info. Your posts (and successes) leave me hopeful for getting all of this stuff figured out.
Casey,
Oh so sorry, Clostridia is a nightmare!! I am serious when I say that the ONLY thing that worked was using the biofilm protocol without EDTA (Klaire Interfase or Kirkman's BioDefense) with natural antimicrobials like OoO, GSE and OLE, plus I would add in the Lauricidin. That stuff is amazing!! It's anti viral, yeast, fungi, bacteria and even some parasites! Good luck, I hope you will keep me posted!
Thanks, I will definitely keep you posted. Since I'm not working with my Dr on this, is there a good Biofilm for dummies site you'd recommend? I am going off of your original post here but am not sure about some of the supplements (what and where to buy). I'm worried I'm in over my head here but we need to so something. Also, would you recommend not starting before Xmas so that die off doesn't ruin the big day? Thanks for your help!
Ok, I am totally ripping off your Biofilm supplement list (thanks!). Do you mind if I ask you some questions? I will ask anyways since you can't answer real time. Tell me to stop bugging you at any point.
Which brand and dosage of GSE are you using? I saw capsules but didn't come across a "pure" liquid option. My kids are strong reactors to salicylates and I'm afraid to use anything with fillers.
We are on Fluconozole right now, should we continue while we're doing Biofilm? Do you know of a diff between that and Nystatin?
Is this the Caprylic Acid you use?: http://www.amazon.com/Pharmax-Caprylate-Complex-Vegetarian-Capsules/dp/B000NE7NLW
Can you tell me the brands/dosages for these ones: hydrochloric acid capsules, kombucha.
And lastly (I am sorry to be bugging you with all this crap but I want to do it right!), We're already on Kirkman Lactobacillus Duo (two capsules twice a day). Would you switch to the Culturelle and New Beginnings Probiotic Support or is the Kirkman ok?
I was reading elsewhere to continue with other supps while we're doing all of this, did you guys? We aren't on quite as many as you (your supplement list is impressive) but there are a lot.
I ordered the other supplements this morning, can't wait to start. My son was at a good spot earlier this year (mostly thanks to glutathione) but in recent months, he has regressed to being angry and defiant with some violence mixed in. We want our sweet boy back! Thanks in advance for your help. (and again, sorry)
Casey
Casey,
My purpose for writing is to inspire people with our story, I would never want to stifle the questions that come from it! =)
The only GSE brand we will use is Nutricology. Each drop is 10mg, we are currently using 12 drops, three times a day, with our 3 year old and the equivalence of 32 drops (we use the tablets) with our 6 year old, also three times a day. It did take us a while to get to this dosage we are at. It is a high phenol product, so what we did in the beginning was to give it with a No Phenol, but as we heal them, we are finding that phenols are no longer a big problem with our children.
Fluconazole is Diflucan. It differs from Nystatin in that it is a systemic yeast killer. Nystatin only addresses yeast in the intestines. You can certainly use this while doing the biofilm protocol. We had to balance the anti-funglas/Diflucan with an anti-bacterial like OLE and/or OoO, because killing off the yeast often results in an increase in bad bacteria. This is when we discovered the Clostridia, big time!
Since I've written my biofilm entry, I have discovered the benefits of Lauricidin and I would actually recommend that over the Caprylic acid. Both are from the coconut, but the Lauricidin is much more potent and deals with a very large range of microbes, here is a link for it - http://lauricidin.com/micro/
The Hydrochloric acid capsules we used at the time were NOW Foods Betaine, and I think one capsule was enough for our son, butI know we had gone up to two at one point. The way to know what a person needs is often explained as using as many capsules as you can without causing reflux. When you feel the reflux, back off.
We have actually stopped all of the fermented foods, because it can cause yeast issues to become worse in compromised people like our kids, especially with leaky gut. So we had used the kombucha, then made our own kefir, now they don't get any of that anymore. I even stopped the Sacc B because it has become dysbiotic in both boys, meaning it grew out of control. Now granted, I wouldn't change what we did in the past, because I think it was essential to reduce the Clostridia, but we don't have a problem with it any longer, so we stopped the Sacc. B.
I have to post this in two pieces, lol, too long!
Continued for Casey
For the probiotics, just look at the bottle to see if the S. Thermophilus strain is in it. we choose to avoid this, because of the possibility of PANDAS and many PANDAS kids are worsened by this strain, because of the dysbiotic strep in their guts. I would recommend using whatever probiotic (dairy free) you can get the highest doses of. We use Custom Probiotics, 11 strain, and give our older son about 500 billion CFUs at night, our younger son gets about 375 billion CFUs a night. High dose probiotics are really key in replenishing the good bacteria.
And Casey, I would highly recommend googling Andy Cutler and glutathione. He recommends against it's use, because in certain people, it can cause irreversible long-term damage. It's probably best to avoid that in the future, as you never know if it was responsible for the recent decline you have seen.
Have you considered (or are you already doing) chelation via the Andy Cutler protocol? If you don't fix the problem at the root (heavy metal toxicity) you could be chasing your tail....or your son's, teheheh. It's a viscious cycle without doing away with the culprit. You can get a Doctor's Data hair test through DirectLabs.com If you use the coupon code "AUT" it's $74. Make sure to get the hair test with the essential elements AND toxic elements, not just the toxic elements hair test. Andy Cutler's book "Hair Test Interpretation" can guide you through how to read it, because it's NOT black and white, there is a lot of reading between the lines and some elements are read in reverse, for instance, having high hair calcium and magnesium actually means there is a low body burden of these elements. It's so important to know how to read it. I have his books linked into my "Recommended Reading" tab at the top of the page.
As for supplements, it's important for our kids, to always stay on them, but while doing the biofilm protocol, I have been told by some to avoid calcium. We don't supplement with it anyway.
I hope this was helpful and please never apologize for having questions! What we do may not be for everyone, but I know of a LOT of kids responding well to this form of treatment!
THANK YOU! You have been beyond helpful. Seriously, your blog is the most informative source I've found since starting this whole biomedical journey.
I can't imagine not having to give the kids No Phenol several times a day! Our probiotics look safe but we were only giving them 90 billion CFUs per day. I will up the dosages and use the remaining bottles before we move on to the Custom Probiotics.
I think I have everything ordered (including the hair test, thanks for the coupon code).
We have never done chelation but have the kit from our dr and were planning on doing it over the break. Would you suggest doing this first before we move on to Biofilm? It will probably take a bit for all of the supplements to get here anyway.
That is hard to hear about glutathione since it was our magic button for so many months. Our son has always been a moody/sullen kid and within days of glutathione, he was happier and consistently calm/sleeping/nonviolent when he'd never been before. We were (and currently still are) doing transdermal cream twice a day and our dr just ordered a nebulized version to try too. I guess I have my reading to do!
As far as phenol sensitivity, are/were your kids sensitive to all phenols (including chemicals) or just foods? My kids are horribly chemical sensitive and can go from zero to crazy within minutes of coming in contact of Lysol, perfume, paint fumes, etc. I am the same way but get migraines from them. I am hoping to someday increase their tolerance for this stuff.
Thanks for taking the time to help me. I'm excited (and nervous) to dive into this and I'm sure this isn't the last you'll hear from me. ;)
Casey,
I have read in Andy Cutler's book that MCS (multiple chemical sensitivities) is the result of a slow phase 2 in the liver. There are two phases in the liver, phase 1 is like you putting the garbage on the curb, phase 2 is the garbage men coming to remove it. In the process of phase 1 converting the toxins for preparation of phase 2, they become MORE toxic, so if a person has a slow phase 2, you can imagine the impact....it leaves these toxic products to sit around longer than they should, effecting our neurology. Using grapefruit seed extract or grapefruit products will slow down phase 1, which allows the body to detox at a more balanced pace, for those of us with slow phase 2. Just a thought.
So chelation....you mention a kit from a DAN! I hate to say it, but I am worried, lol. DAN! chelation is often different from Andy Cutler chelation and can be very dangerous. Andy Cutler has very specific dosing guidelines that require dosing the DMSA/ALA at a fraction of the dose size and continuously every 3-4 hours for three days on and at least 3 days off, before starting again. So most people do this over weekends, Fri to Mon. It's this dosing info that is THE most important part of the protocol and it's directly tied to safety. Here, read this - http://onibasu.com/archives/am/53055.html
Regarding the glutathione, I would say that the cream is probably not as harmful as doing IV glutathione, but I am not sure about the nebulizing methods. Here is another link for you - http://onibasu.com/wiki/Glutathione
The biofilm protocol will not be able to be done at the same time as chelation, because you will be using a mop-up product like charcoal or pectasol. They will absorb anything you dose near it, so it's not recommended that you dose chelation on the same days, but what you could do is use biofilm on your "off" chelation days. That is what we do. So we use them in overlapping periods of time, just not on the same days. I think the two compliment each other in many ways.
As far as phenol sensitivities, my older son was more sensitive to them, physically. We would see the red ears and cheeks after eating things like pistachios, but I honestly don't even know about the chemicals, only because they are so sheltered from these things that I don't even know. I would guess that they could be sensitive to chemicals, just because they are heavy metal toxic, but I also do a lot with GSE, so maybe not, lol. Not a good answer, I'm sorry, but I do so much to prevent that sometimes I don't even know what would happen if....lol.
Hi!
I knew about the phase II liver detoxification being slowed down but my dr looked at me like I was crazy when I mentioned it and asked for liver function panels. He did prescribe the glutathione which helped with my son's sensitivity since it helps with the phase II free radicals but now we're all out of whack again and I don't know which way is up.
I have MCS too, have had it my whole life but it is way worse after having kids. I can't even be behind someone with perfume in line at the store or I will get an instant migraine. I pop four Motrin every time I leave the house, I’m sure my liver LOVES that! Their preschool uses all fragrance free, have removed markers from the classrooms and the kids wear gloves when they paint. The teachers don't wear perfume so we are safe there but if we ever take them to the Y kid's zone (Lysol) or the mall (perfume counter every 5 feet), they are instantly hyper and aggressive. We had to stop gymnastics at two different places since they light scented candles that made them nuts (and I looked nuts for asking the people to blow out the candle every time). Even the rubber from the bicycles in the toy aisle at Walmart sets off my head and makes the kids crazy. So we pretty much avoid taking the kids to a lot of otherwise kid friendly places because of the chemical issue. I have heard of GSE but for some reason I have never tried it with them or myself. I am pretty positive that my lack of knowledge on all of this stuff before having kids helped me pass on my sensitivities/biochemical issues to them. What a nice gift to give your kids, no?
Yes, we do have the kit from our DAN! Dr and I previously didn’t know better. After your mention of it yesterday, I looked up Andy Cutler’s method and it makes sense that it’s way safer. So I guess I will be ordering Andy’s books now and starting next week! Are all of his supplements over the counter or do I need a script?
I have a feeling we are in for an interesting few weeks with all of this! I ordered so many supplements at once yesterday that I have no idea what is going to show up on my doorstep and when. We are going to tackle my son (not literally) first with the chelation/biofilm and then we will move on to my daughter once we get a handle on everything. His aggression/ODD behaviors are more pressing than my sometimes Linda Blair daughter so it makes sense to go that route. At least it is nice to have a husband who supports all of this and a newfound blogging mentor who gives me all of the right info. Thanks! ;)
I don't know, if you know this Casey, but you can raise glutathione naturally with foods and using certain supplements like NAC. With kids, you shouldn't go over 100-200mg daily, but it's great for so many things, you should google it's benefits. You might need to add to that ever-growing list of supplements, lol. Avocado is great for increasing glutathione and ironically, when you add in ALA to the chelation protocol which is about 6 rounds into chelation, that too raises glutathione! So there are many ways to do this without spending a fortune on something that doesn't often work, because you aren't fixing the problem, you are putting a bandaid on it. With heavy metal toxicity, glutathione will continue to be a problem, however in contrast, by doing chelation, the body will begin to correct it's deficiencies. Of course, I am no doctor, I am just sharing what I have read. =)
I agree with the idea that dealing with your son is a good start. My younger son has the ODD symptoms when things are off. Doing the biofilm protocol with him is proving successful, thank goodness! We are only on round 40 in chelation with him, it takes time to see more permanent improvements in the pathogen arena.
Feel free to e-mail me directly, if you would like to keep in touch while you start on this journey - luckylot@ptd.net
PS - are you on Facebook?
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