Oh the joys. Parasites and viruses.

I can't remember a time when we haven't had multiple experiences overlapping each other, graying the fine line that once existed between symptoms and results, cause and effect.  I hear myself relentlessly repeating, "it could have been, or it might be..., but I just don't know".

As you may know from reading my blog, Gavin has a parasite called Dientamoeba Fragilis, once labeled as a protozoa/amoeba, but more recently relabeled as a flagellate.  Lyme Disease is also a flagellate and as I am reading about the D. Fragilis, I am learning about the similarities they share, such as the many changing forms this parasite has....making it hard for any conclusive fact to be established about it's life cycle and stages.  One thing that has been determined is that it doesn't respond the same in a body as it does in a test tube or slide.  It isn't even known, if this parasite goes through a cyst change during it's unknown life cycle.  We don't know, if it hatches or reproduces with the full moon or new moon, or BOTH.  There is overwhelming evidence that these creatures cannot survive outside of the body, suggesting fluid transmittance or the use of another "host" to transmit them successfully from person to person.  It is most likely that they are hitching a ride on other parasites like B. Hominis or pinworm, etc.

I have a theory about how Gavin could have gotten infected with this one-celled parasite and perhaps has had it since birth (since all of his symptoms have been there since then).  When I was about 19 years old, I experienced a case of pinworm infestation which was ironically short-lived and didn't require treatment.  If D. Fragilis hitched a ride way back then, perhaps the pinworm situation resolved itself, but I could have been carrying around the D. Fragilis, asymptotically, which is not very uncommon.  Along comes this helpless baby boy who contracted my parasite in utero and never had a chance against infection from the very first breath he took.  He was immediately sensitive to foods like dairy and soy, he bloated early on, had torticolis (not sure if it's even related, but part of the big picture of his health), bowel movements varied from constipated to loose from the very first bite of "solid" foods, he had a seizure by the time he was a year old, and mood swings and control freak are understatements!  So here we are three years later, with possibly three years of damage from this GI-disturbing parasite.

What does all of this mean for families like ours who are trying tirelessly to rid themselves and/or their children of this monster?  It means experimenting with many treatment protocols.  We did multiple natural parasite cleanses from Humaworm and Artemesia to W-W from Pure Herbs and even higher doses of black walnut hull.  Although he always experienced some level of die-off, the symptoms never seemed to subside fully, he continued to have behaviors that waxed and waned with the moon cycles, very typical of parasite infestation.

Alinia was recommended by our DAN! doctor.  He gave us a script for just Gavin, 5 days worth.  So I did more research before even considering giving this RX to him.  I wanted to know more and had quite a bit of information already under my belt confirming that Alinia should only be used, if the doses are going to be high enough and used for long enough to rid him of this pesky intruder for good.  Just giving 5 days of meds could create a super-bug rather than killing it off, especially considering it travels with the ever-resistant B. Hominis which has a very long cyst cycle.  When a parasite is in it's cyst form, it is impossible to kill, so that means either knowing it's life cycle (which we don't) or treating for an entire month, plus a few days, to ensure hitting the exposed, non-cyst phase.

So as a last resort, we decided to attempt the Alinia, BUT only if we could have the longer dosing schedule and for the entire family since it is highly probable that this originated with one of us, and even if it didn't, we could pass it between us again post-treatment, all dependent on it's method of transition, but I don't like to take chances with our children and their health.  Our doctor was open to the treatment protocol I had found to be successful with multiple other families and ironically, our insurance actually covered it!!  Over $1000 per person worth of prescriptions, yippeeee!!

So here we are, on our third day of taking the Alinia (two days before the full moon), all of us.  I expected to be in a world of hurt, but surprisingly, it's been pleasant....well, hahahahaha, except for those around me, since I am very clearly effected by some form of die off, if you know what I mean (blushing).  Not very ladylike to say the least, teehehehe.  Gavin has had some gas as well, bowel movements were perfect for the first two days, but today we had what we have come to call Flagyl-poop.  Grayson was put on Flagyl years ago, for high levels of Clostridia (bad bacteria) and his BMs were hideous, they floated like chunks of cotton candy, attempting to stick together in what looks like it might have resembled a BM before exiting the body.  It is undeniably a die-off symptom.  Another interesting fact is that the Alinia also kills anaerobic bacteria like e.coli and clostridia, both of which we know Grayson has had, via stool samples.  This prescription has many modes of attacking our boy's ailments.  Lets just pray the results are permanent!

To add insult toinjury, two days into taking Alinia, poor Grayson contracted Coxsackie (Hand, Foot and Mouth Disease).  He developed a sudden high fever, lethargy, not hungry, sores in the back of his throat and he slept much of yesterday after  I loaded him up with 40,000IU of vit D3, OLE (which I confirmed wouldn't interact with the Alinia), Virastop and Lauracidin.  He woke without the fever, but was still very lethargic until bedtime, which he did not fight one bit.  He was ready.  Today, his mood is great, his eyes look bright, he is energetically playing with Gavin and he wants to eat, but his throat hurts too much to swallow anything solid. 

Amazingling (knock on wood), Gavin hasn't shown ANY signs of this illness....yet.  The contageous period can last weeks as the virus sheds, so I am praying Gavin's immune system is fighting it off successfully.  We are helping him with the natural anti-virals too.  In fact, Gavin is like a new child yesterday and today!  His mood swings are GONE, he is cooperative, compliant, happy and bouncy, his speech and ideas are more complex, he is playing nicely with Grayson (who is playing nicely back, HEAVEN for me), his belly was even flat for the first two days on the Alinia.  Today he has a little pouch after the strange BM, but still not as protruded as usual.  He's amazing, and I am relieved.  There is a glimmer of hope that perhaps this is Gavin's main health issue, and that perhaps we will have it resolved with treatment.

We just ordered follow-up hair tests with Doctor's Data, Inc. to see the progress we have made after a year of chelation with Gavin and two with Grayson.  The results should be in between tomorrow and Tuesday...I am so anxious!!  Maybe, just maybe, Gavin will still not meet Andy Cutler's counting rules and maybe, just maybe, this parasite will resolve the issues we were tying to mercury toxicity, and maybe, just maybe not having him vaccinated was the smartest thing we ever did!!  We'll see, one can hope, right?  Without hope, our days look dark.  I prefer to see the light at the end of the tunnel, even if my perception may be slightly off occasionally.  It can make the days in between seem less stressful.

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...

Seeing the WOWs, but what did it?

We are seeing AMAZING changes and we are even starting to see some consistency, things were all over the place before. I just can't put my finger on which was the major "wow-factor" or if it was a combination of things. Here is what we have done recently, and in this order:

1-Started Flagyl and Diflucan (based on yeast and bacteria markers in Organic Acid Test), also started SeriPhos for anxiety.

2-Added artichoke extract to the milk thistle we were already using to add more liver support (trying to address his whole body itchiness with either anxiety and/or liver stress as the cause)

3-Added OLE daily (200mg)

4-Started Nystatin once a day

5-A gland that has been raised on the side of his neck since he was a year old (and I mean VISIBLY raised) has gone down significantly, some days it's not even palpable! This is major.

6-Increased buffered Vit C to about 1000-1200mg a day to help with irritability (we had reduced it for oxalate issues and found him to become increasingly more irritable without the high levels of C)

7-Noticed his tongue was spotted and almost coated looking and pimples on rear (probably related to the die off from gut bug meds)

8-Stopped giving calcium (suspecting hypocalcemia), as a rial, just giving 360mg buffered mag oxide instead

9-Increased Nettle tea (about 1/2 cup a day) for calcium and possible allergies (we had used this before in smaller quantities)

10-Stopped first ten day course of Flagyl and Diflucan

11-Added 1/4cap of ACE (Adrenal Cortex Extract) for possible adrenal fatigue (we started seeing major changes about here, literally immediately)

12-Increased Milk Thistle by at least 200mg per day for itching, seems to have helped, but itching is still there throughout the day (still can't quite figure this out, but may be related to toxic release)

13-BMs have FINALLY gone from a very loose, strange consistency and foul smelling to NORMAL and not smelly, still undigested materials in them though (nuts, buckwheat groats and sunflower seeds seem to remain undigested)

14-OMG, as I was writing this, I noticed a crazy rash all over his upper torso! It looks like chicken pox! They are evenly spaced little pimples, he said they don't itch. They go from his collarbone and back of the neck to his mid-torso, they are not on his arms, legs or face....We just started the OLE 11 days ago (it is a top rated antiviral) and strangely, that coincides with when we saw the gland go down! The gland originally popped up right after his 12 month vaccinations, it came with what looked like a mild case of the chicken pox then too! But it also coincides with when we started the Nystatin, so it could also be from die-off of gut bugs. We haven't given him a bath, put any lotions or anything new on him either.

The point we are at now....verbal stims are almost non-existant except when he seems to need some OoO (3 drops), Biotin (20mg) and 1 No Fenol for yeast, we give this 2-3 times a day, we haven't had any meltdowns in DAYS, the anger is gone, the anxiety is non-existant, he is silly and talkative, almost hyper, but more appropriate kid stuff and he is listening well when we ask him to calm down, defiance has subsided. He must be feeling good. He goes to bed around 8pm and wakes no earlier than 8 or 8:30am, even 9-9:30am some days (and this is a child who used to wake a 5:45 before chelation!!). He is still itching, but now I can't tell if it's habit, a stim, yeast, related to allergies (he has no other signs of environmental allergies), or just plain die-off side effects. Between cleaning out the liver, killing off the gut bugs and chelating metals, he has a lot that could be coming from his pores. This is the first time in almost a year that we have had consistent days like this. We will be going onto another course of Flagyl and Diflucan. Once we go off the Flagyl, we will retest with another OAT (Organic Acid Test) which our DAN! might have actually gotten covered by insurance!!! WOO HOOOOOO!! (happy dance)

These have been the biggest WOWS we have had. In fact, yesterday we had a play date with two boys we haven't seen in ages, he was FABULOUS the whole time, playing nicely, sharing (wow), laughing. The play date we had before this last one was one disaster after another, he hit the boy, he cried, he lost his temper, screamed and had no patience the whole time, grabbed toys left and right, but this was just a few days into his meds so I am sure we were dealing with die-off.

More questions, as usual

Another new layer unfolds. It always appears that with our gains, comes the confusion of additional changes. We have been seeing major gains in Grayson lately, he is just flourishing in between rounds of chelation, but with each round we unveil yet another new possible problem. It seems like we change his supplements monthly....talk about heavy on the wallet? And with each new issue comes the recommendation of more testing...also out of pocket expenses for us. We just can't keep going at this pace or we will be out of a house in no time! We are trying to pace ourselves, but this is something that is very hard to do. A parent wants to do EVERYTHING possible to help their child, NOW, not when the paycheck allows it. It is painful to know that we need to be doing more for him, but we are forced to decide on what is most important at the time...ya know, like eat dinner or try a new supplement that MIGHT work...pay the gas bill or run another test to see how his liver is handling the chelation. How does one prioritize these things when they don't have a decent flow of income, is beyond me?? I am grateful for our ability to at least do what we can.

So the antifunal and antibacterial meds worked wonders, wow, what a difference!! We see such marvelous gains in him, he is calmer more regularly, he is waking in a GREAT mood, sleeping well and until after 8am every day (heaven!) sometimes I even have to wake him after 9:15am! The down side to the meds is that they put additional strain on the liver, which mercury and chelation also do. This is such a balancing game. We have increased the appropriate vitamins: vitamin C, B and E three times a day, plus we have added an additional liver support, artichoke extract. We also figured out that he probably has adrenal fatigue, which would cause the severe mood swings so we added Adrenal Cortex Extract, perhaps this is the cause for our recent wows. He has been pretty amazing for the past three days or so...hmmm, yes, it might be the ACE after all! BUT....isn't this always the way, with all these great changes we have seen a significant increase in itching. Crazy, frustrating, nonstop all over body itching!! He uses the back of his hands rather than fingertips, he rubs under his chin, across his forehead, along the sides of his head and ears, up his forearms rubbing them along the sides of his body, then he truly itches in the classic sense, his shins and ankles, both sides at the same time. This goes on all the time lately and it has been irking me trying to figure out the cause. We have spoken with Dr. Woeller and Dr. Schmidt. We have considered allergies, although it's not consistent with anything in particular (we tried removing foods and using Benedryl, which interestingly sometimes helps for a while) but nothing seemed to be addressing the root cause. I posted this concern on the Autism-Mercury Yahoo Group site and one person struck a cord. He said that liver stress can cause whole body itching. Between chelation, heavy metals moving through his body and then taking the additional medications, this makes complete sense. Of course, he recommended more testing, but he also said that if we increase his liver support and the itching subsides, we have our answer. I tested this tonight and it seems to have actually worked!! Although, only for about 2 hours or so. I am going to work with his Milk Thistle (which I don't think I have been dosing enough daily) and artichoke extract and might even add in another liver support, maybe going back to the liver life. Even with this newest event, we couldn't be happier with the results of the medications! We have to go back on them for one more round, to be sure we got all of the spores in every stage of their life cycle. Then about 7 days after we stop the Flagyl this time around, we are going to do another OAT test and see how his levels have changed. This is all fine and dandy, but what I am really curious about is how we will keep them down naturally, after we have stopped all of the meds. That is yet to be determined and only time will tell, but for now, I am enjoying the ride!