Thursday, June 30, 2011

In the throws of regression, and such

In the midst of ongoing mold remediation (and finding more mold) you would think it couldn't get any worse.  Yes, the kids were battling coughs and mild regression already, but now we have taken regression to a whole new level.

Two days ago, we were outside at a friend's house and Grayson had to go to the bathroom.  Since they were running around in dirt, I didn't want him trapesing through her house so I actually suggested that he use the toddler potty we had outside with us, hehehe.  He also happened to have a button on his pants and needed help getting them open.  These two unusual scenarios had me closer to him than I normally would be, enabling me to notice something out of the ordinary.  I caught a glimpse of a dark spot below his waistline and it was actually an afterthought on my part to take a closer look at it.  When I did, I realized it was a deer tick, embedded in his skin!!  Luckily it didn't appear engorged, although now I am learning that this isn't necessary to transport bacteria to the host, so the false hope I had to begin with is quickly dwindling.

The process of getting a tick the size of the tip of a ball point pen out of a 6 year old's tummy while he is trying to sit up and look, squirm and talk through the whole ordeal, is nothing short of painstaking.  Not to mention the sheer panic that went through my body at the realization of what had just happened....I was numb and frantic inside.  I don't know, if it's possible that the tick regurgitated in the process of trying to get him out, but I made the mistake of listening to strangers who were working at my friend's house, and we tried to drown the tick into backing out on it's own.  We put oil of oregano on it.  It wasn't backing I used needle nose tweezers which were still too big to grab just the head of this teeny creature, and I yanked the sucker out.  It came out clean, nothing was left behind and the only mark, to date, was the irritation of grabbing the skin around it and the little hole it left where it was embedded.  The only reason I know it came out clean is because when I got home, I got creative and used Grayson's Cyclops Eye to view the tick up close and personal and then I took pictures of the tv! So now I have documentation of the very tick that bit Grayson.

We rushed home and began the daunting task of trying to determine how to get this pesky critter tested for Lyme bacteria.  I called the State department of health, who referred me to a place locally where they ID the tick, but they don't actually test them, she referred me to the hospital who referred us back to our doctor.  No one in our doctor's office knew how to handle testing a tick, even though the hospital told us we needed a prescription and more direction from our doctor.  It wasn't until I got my husband (who was away on business for days) involved, that we finally got some answers, found a lab to test it under our insurance AND got our doctor to write the script that they had refused to provide only minutes before with me.  The lab provided the codes for the doctor to write the script at which point they were only too happy to get rid of us and provide what we needed, lol.  We are persistent people, we don't go away that easily.  We didn't get to where we are in our healing by following the path of least resistance.

So the tick went off to the lab and we expect the results in the next two weeks.  I have my reservations about the concept of Quest testing the tick for all of the possible bacteria a tick can transmit, so I actually plan on calling the lab for more specific information about it's testing.  They do a PCR test which uses DNA, but I don't know, if it only looks for one or more of the bacteria involved in Lyme. 

While we wait for the results, I wanted to get a jump on treatment naturally (even though our Dr. offered to start treatment immediately with antibiotics).  I chose to read up a bit on natural remedies and found Dr. Buhner's protocol which identifies many natural remedies for treating Lyme.  They have indicated that many of the antimicrobials we use already (GSE, OLE, Lauracidin, etc.) help with Lyme bacteria, but he also suggested that THE most important neutraceutical to be used on a Lyme patient is called Japanese Knotweed.  Here is his description of this important herb:

"The core herb for Lyme is Japanese Knotweed (Polygonum cuspidatum). Japanese Knotweed is an invasive botanical in almost every place where Lyme has emerged. Buhner noted that rather than taking the gift that nature has provided to exactly those that need it, people in Vermont are focused on trying to eradicate it from their yards. "Nature has a way of helping us but we quit listening a long time ago," said Buhner.

Japanese Knotweed shuts down the inflammatory pathways initiated by the spirochete. Other herbs like Turmeric can shutdown inflammation as well, but it uses very different mechanisms. Knotweed, on the other hand, affects the exact pathways that are problematic in Lyme disease. It is very specific for the inflammation related to Lyme disease. "If a genetic biologist had designed something, it could not be any better," he said.

Knotweed crosses the blood brain barrier. It is specific for inflammation in the meninges. If a person presents with a stiff neck and headaches as part of a neuro-cognitive Lyme presentation, Knotweed is very specific for these symptoms. It is a potent antioxidant and has protective effects on the brain. It calms the central nervous system and helps with arthritis symptoms in Lyme disease. Knotweed is an herb and drug synergist meaning that when it is used with antibiotics, it makes them powerfully effective even in cases where they previously failed. "If I could get every Lyme-infected person to do one thing, it would be to take Japanese Knotweed along with their antibiotic therapy. It increases the effectiveness by at least double," he said.

Knotweed is a mild antibacterial and is effective against other spirochetal organisms such as Leptospirosis. It modulates the immune system by either raising or lowering immune function as required in each unique person. Knotweed reduces the dynamics involved in autoimmunity. It is an angiogenesis modulator and controls the healthy generation of blood vessels. It stimulates microcirculation to the eyes and joints thus helping to facilitate the movement of drugs or herbs to those locations. It is cardioprotective and helps to remove endotoxins, which is a benefit to those with Herxheimer reactions during treatment.

The chemistry of Japanese Knotweed is incredibly complex. It contains resveratrol at a level higher than any other known plant. Buhner is not a fan of resveratrol itself, but the only product on the market that contained Japanese Knotweed at the time of the writing of his book "Healing Lyme" was Source Naturals Resveratrol with 500mg of Polygonum per tablet. Isolated resveratrol alone will only be partially effective and will not be very potent for Lyme disease if it was derived from grapes.

Ideally, people would use the plant itself. There are more products available now that are made using the root, which is what Buhner prefers. In terms of making the protocol as simple as possible and easy to follow, the Source Naturals Resveratrol product is still a reasonable option.

Knotweed is clearly the most important herb for Lyme disease. It continues to emerge more and more strongly and is incredibly good for cognitive Lyme and for inflammation. The dosage of the Source Naturals Resveratrol is 1-4 tablets 3-4 times daily for 8-12 months. Buhner finds that some people begin to experience symptom relief within two weeks to two months, but it takes up to a full year to really turn the disease around."

This is the link for more information about treating Lyme naturally.  He has a LOT of great information available here.  It's a reduced version of his protocol.  He also has a book on this topic.

I spent the next morning calling health food stores, to hunt down the Knotweed and Yarrow which is an herb that has been proven to be more effective than DEET as a bug repellant. It was even tested by the military. You better believe I will be working on formulating a safe bug repellant for the kids!  With both the Poconos and Maine vacations in our near future, I definitely needed to get on that, pronto! Poor Grayson is afraid of the grass unless I spray him with something so that was a priority.

I also gave Grayson a loading dose of 15 drops of LDM-100 which isn't an herb recommended by Dr. Buhner, but I have read about it in the past as possibly helpful in treating Lyme, but this seems to be questionable when reading more about it.  He handled the dose well, but considering I am seeing an increase in yeast symptoms now, I am actually thinking of dropping the LDM-100 and trying Cat's Claw or something else that won't stir up the yeast quite so much.

This is a work in progress, I am learning while trying to maximize the early stages of the possibility that we could have a Lyme issue on top of everything else....

I can't help but think about what I could have done differently to prevent it...natural bug spray (which I had been meaning to research), long clothes (but it was just too darn hot out), staying inside (is this really practical), doing a tic check every time he came in from outside (totally slipped my mind).  And to compound matters, the night before we found the tic, he dressed himself for bed.  He normally sleeps with nothing on which would have allowed us to see the tick.  So I don't even know, if it was there for 24 hours from playing in our yard the day before or if it was just picked up while we were playing outside at our friend's.  It's more likely that a tick he just picked up would be less of a threat, although, that is another fact being hugely disputed.  I know it isn't helpful to think like this, but it's a normal part of acceptance. I am coming to grips with something that was clearly preventable to some degree.  I feel guilt, I feel anger and it's all driven by fear.  My child was already suffering and now Lyme might bring that to a whole new level.  If there is any good news in this situation, it's that we were already doing so many things that could help battle this evil illness.  This weekend we are back on chelation, another recommendation for those with Lyme disease.  Here's to hoping the tick comes back clean or at minimum, everything we are currently doing reduces his odds of being plagued with a life-long debilitating illness.

UPDATE - on the lab testing - The code we were told to use by Quest only tests for Borellia, AKA - Lyme.  It does not test for any of the multiple co-infections!  I figured as much.  So I got the codes to do at least two more of the co-infection testing (Ehrlichia and Babesia) and had our doctor add the codes to the testing with Quest. One of the customer service representatives was concerned about the possibility that there wouldn't be enough tick to go around for all this testing, but we at least have to try to get as much out of this as we can.  Perhaps we will still be forced to test Grayson down the road, but I would like to try to get as much information as possible, right off the bat.  If the tick has even one of these infections, we know we need to treat.

Monday, June 27, 2011

Weekend in the Big Apple

We took the kids to NYC this weekend.  New York is a wild and exciting place to visit, people bustling all over, cars, horns, trucks, sirens....a sensory overload for someone with Sensory Processing Disorder.  There was a time when this would have been challenging for Grayson and there certainly were times when his hands instinctually went to his ears, but I am really impressed by how much love both boys had for this frenzy of a weekend!  They were kept up well beyond their bedtime, we traveled via the subways and we allowed them to eat some foods while we were out!  They were GREAT!

Even as well as they did, being in a hotel and hiking around a polluted city has it's consequences for the immune compromised.  Then compound the issues with less sleep and honestly, I'm very surprised we didn't have more trouble on our hands.  It wasn't long before Grayson was swatting at his ears and itching his ankles so I knew something was up.  By the end of the weekend, they were happily exhausted, but clearly needed an increase in their antimicrobials to combat the damage it did internally, because we could see their frustration thresholds slowly creeping backwards.  Today I noticed his fear of bugs came back (he was crying at the far end of the deck and wouldn't walk past a bug that he was convinced had a stinger) so we also added in his homeopathic constitutional remedy and I will continue to give it daily until that fear is reduce to a more normal response to bugs.  Gavin's red anal ring had come back too, which is already almost cleared up since having a good dose of antimicrobials this morning.

We had been reducing their supplements and antimicrobials, but then the mold exposure created a riff in that plan.  Just before this trip we had increased everything slightly and returned a lot of the supplements we dropped, just for the sake of immune function and combating the mold exposure.  We had decided this was not a good time to experiment.  Then after this weekend, we went up yet again.  They've bounced back really well too!  It's clear that the antimicrobials are the key to their behavior control.  It NEVER fails us.  When they aren't right, increase the antimicrobials and we get our kids back, but not after a little die-off.

The subway is coming...clearly not one bit afraid!
This weekend it was obvious to us that they are doing really well though.  There was little to no sensory overload, they handled change like troopers, they LOVED the subway even with the number of crammed people, the jolting unpredictable movements and noise!  They were certainly cautious when it was appropriate, but they weren't overly shy or frightened of anything!  In the past, doing anything adventurous and loud (like carnivals) was a highly stressful event with us trying to convince Grayson that he didn't have to be afraid of every sudden noise he heard.  He would literally scream with his hands over his ears, he couldn't even focus on us talking to him.  We had to get out of the situation to get him to listen to us and when he could concentrate, he was always distraught with his own reaction, but it was truly instincts at play.  He didn't want to be afraid of the sounds, he just couldn't control his reaction. 

There was a whole lot of walking this weekend.  At the height of Grayson's symptoms, he couldn't even handle walking around a store without sitting in a cart (mercury effects the mitochondria causing reduced energy).  He walked all over NYC this weekend and we are talking about blocks and blocks and blocks of walking!

Today is our first day home and with their increased doses of antimicrobials, they are playing well together (getting into mischief, of course) and seem very happy and content.  I don't think I could have asked for a better outcome from our little weekend away!

Wednesday, June 22, 2011


As you can imagine, summer break means less time for mommy and a lot more going on around the house!  It has cut down not only my ability to write, but my ability to think, hahahaha.

The good news is that the mold situation is FINALLY wrapping up this week!  The work was completed today, the basement is CLEAN!!  Yippeee!!  They literally cleaned every inch of the room, the joists, the floor, in and around every nook and cranny.  The HVAC duct work was scoped and cleaned today.  Tomorrow the exit testing will be done!  Whew, what a ride!  We've been diffusing essential oils day and night lately too.  Anything to help clear the air. 

The bad news is that we all have sinus infections again, me worse than everyone else, but at least it seems to be short-lived this time around.  I made the mistake of letting the chaos of planning their birthday party and dealing with the mold get in the way of taking my supplements daily.  It's obvious to me that this has had an impact on my ability to fight this infection.

The boys are still coughing though.  It's definitely less frequent and less severe, so maybe it is working it's way out.

I am sitting on my deck contemplating this world.  Thinking about how much more severe everything has become.  Our children are being born toxic.  Autism, allergies, cancers, diabetes, autoimmune diseases, among other debilitating and life-shortening diseases are all on the rise.  In fact, it's been determined that this will be the first generation that will live a shorter life span than the one before it.  Natural disasters appear to be increasing, taking countless people with them.  I even feel like the number of insects have increased in the past few years.  People are less tolerant, perhaps because they are ill.  I pray some day there will be enough change to reverse this slippery slope, for the sake of our children and their children.  What kind of world will they live in, if this continues?

If you are reading this blog today, please consider making even one small change to your life, for the better.  Make a promise to turn the water off when you brush your teeth, or replace one chemical-laden product with a natural and/or organic product that won't poison our land when it goes down the drain (our ground water becomes our rain water, people), you could even remove toxic cleaners from your house, or use hydrogen peroxide on your gardening instead of pesticides, stop using antibacterial soaps and hand sanitizers, eat organic and local, take off your shoes at the door.  There are so many easy ways to take baby steps towards a cleaner, healthier environment.  If we all do this, imagine the impact we could have on the world.  Think of it as an insurance policy on the future of your grandchildren.

Friday, June 10, 2011

Chelation update, added ALA!

Round 7 for me this weekend and today began with my first ALA + DMSA dose ever!  Since I had my fillings out in early March, I had to wait three months post-exposure to add the ALA.  I used only the DMSA for those three months to reduce the body burden first.  Now I am playing with the big guns!

ALA is the only chelator that crosses the blood brain barrier.  I don't know what I expected after taking the first dose, but considering how neurologically effected I can be by mercury and chelation, I expected something more.  So far, I feel nothing different.  I started with a very low dose (only 7.5mg) so I don't make this too hard on myself and considering how it effects our kids when we increase ALA (which we did last weekend), I was sure I would feel something, anything.  Maybe it will take time and tomorrow I will be either a basket-case or a space-cadet!  I like to keep my doses manageable, because I have to consider the fact that I am still a mom of two who need me to think clearly, plus life goes on, all around me.

Speaking of life going on around me....I have been very distracted lately, by this mold issue.  It's gotten uglier and more complicated.  We found more mold while going through our basement and cleaning everything out, so now we need more remediation.  The good news is that these two spots are superficial and very minor, but we plan to treat it like we did the leaks, with containment and safety measures all in place.  And the timing of everything is SO confusing, with a different contractor for just about every step.  Test (environmentalist), put up containment areas (mold contractor), remove building materials to reach mold (general contractor), controlled mold demolition (mold contractor), rebuild (general contractor), leave containments up, clean (us and mold contractor), test (environmentalist), take down containments (mold contractor).  Plus we need our HVAC duct work scoped and cleaned and the question of whether we clean before testing has yet to be answered.  I would think we would want to clean the duct work first though, so we can have the airflow tested again as part of our clearance sampling...which means we better figure out who is doing this part ASAP, because keeping the large HEPA filters in our home is costing $200 a WEEK!

Clearing out the basement is painful, but I am keeping our goal in mind the whole way.  It is driving me through tossing furniture, boxes for my collectibles, hair dressing chairs, jewelry I have made, shoes that were supposed to be Gavin's after Grayson grew out of them (I have a shoe thing), baby things like strollers, high chairs, bassinets, bouncy seats, cloth diapers, toys, memories, all of our Christmas ornaments, and basically anything porous or would cost less to replace than to pay a man $50 an hour to clean!  It makes sense and we don't want "stuff" to get in the way of our health, so we are just tearing through it, but MAN, what a HUGE job!!  We ordered a dumpster and have already FILLED it, but we aren't done (scratching head).....and it is hot out now so the suits, goggles, face masks and gloves are ridiculously hot!  We still have some huge furniture to lug out to the dumpster, should be interesting.

Life is never dull around here!  The boys are on Diflucan for two weeks to see, if their constant coughing is a fungal infection.  So far, all it has proven to do is bloat them enormously.  They are still coughing.  So perhaps it really is just a stubborn cold, who knows.  The saga continues...

Sunday, June 5, 2011

What Took You So Long....globe trotting camel milk

The What took You So Long Foundation is a group of film makers globe-trotting and living among the natives in remote corners of the earth to make a documentary about camel milk.  They film stories that mobilize movements and hope to take camel milk on that ride with them....or is it the other way around?  Either way, timing couldn't be more perfect.

When I was on my hunt for as much information as I could get my hands on regarding the benefits and risks of raw camel milk as a health tonic, I came across a Facebook page called "Camel milk is the new oil".  This is where I originally "met" Philipa Young, the writer for the What Took You So Long Foundation.  We connected on two levels very near and dear to me, writing and camel milk.  She obviously had a lot of experience with the benefits of camel milk and even guided me through some of our concerns as we attempted our first days of using it therapeutically with our boys.  Little did I know that she and the rest of the crew had already spent the last year documenting stories in 18 countries, interviewing camel dairy owners, camel farmers, doctors, camel milk drinkers and even some of the world's only camel cheese makers. That's quite the tear sheet! I would say she has *some* experience...

Nicole and I decided to bring the camel-milk-drinking community together in one place by creating our own Facebook page, the intent was to find others looking to heal their children with camel milk and to spread the word. We were thrilled to see our list of members growing astronomically and among them were a few key members of the traveling crew.  The more experience we could bring together, the better the odds are of people trying this new therapy.  Power in numbers.  If we can travel the journey together, we can help one another with a therapy that is new to the autism community. And if you have ever met a biomedical mom, where there is a will there IS a way!  If she has to fly to the Middle East herself to milk the camel and bring back the milk.....well, ok, that may be stretching it a bit, lol, but you get my point.  Luckily for us, there are camel dairy farmers in the US!  But these moms will drive the length of the country to heal their children, if that is what it will take.  You've heard, "Build it and they will come", well, if there is a therapy that works for the autistic community, these moms are among the first to be there with bells on!

So enter Alicia Sully, the film maker.  She cheerily began chatting on our FB page, joining in the discussions we were having about our children and their undeniable changes on the camel milk.  Before we knew it, we were planning to meet her during a visit to the US for her sister's wedding!

There aren't enough kind words to describe Alicia, she is possibly one of the sweetest people I have ever met.  She is endearing, caring, sincere, enlightening and so talented.  We had the pleasure of her company for two days while she filmed our family and our friend Nicole's family for their documentary.  They have filmed all the "science" behind the milk, now it's time to bring this to the world in the shape of real families.  Viewers won't have to wonder, "How does this effect me?" from great distances, because they are going to bring that spin to the table.  It isn't just for Bedouins anymore, you don't have to cross the oceans to taste it and yes, it IS attainable for the average family.  Unfortunately, because of the cost here in the US, the average family probably won't have camel milk on their dinner table, but for those seeking natural, effective treatments for illnesses like: gastrointestinal dysfunction, allergies, diabetes, autism, autoimmune diseases, among many other ailments, it is very doable.  We hope to see this change though, by increasing the supply and demand, perhaps it CAN be a daily staple for the average person some day.

The key to options like this is awareness and spreading the word!

I snapped a few pictures of Alicia filming and of course, she had to try our milk to compare to the 18 other countries she has tasted camel milk in!

What a delight it was to have Alicia with us, I only wish she could have stayed longer!  I am inspired by the passion she shares with her team to offer these special stories worldwide.  They wish to send a powerful message about sustainability and natural healing and I am ever so gracious to be on this journey with them in our own unique way.  My goal in writing this blog has always been to help others heal their children and now the reach has extended even further with the help of this fabulous team of talented writers.  They have opened my eyes to possibilities I didn't even know were attainable, for that I thank you What Took You So Long Foundation!