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.

1 comment:

Anne said...

Can I tell you something, speaking as someone who had minimum 15-20 tics every summer my entire childhood - not kidding. My parents live in the same area still, and my mother is a notorious "attracter" of everything blood-sucking, mosquitoes, tics you name it, and it is not unusual for her to come back from the garden with four or five tics attached - to each leg. If you're, say, stuck in the woods and find a tic and it's a two hour drive back to civilization/pincers and every second it sits there is making you nervous, I have the perfect (and my preferred) option. Don't try to drown or smother the tic, simply put a finger - gently - on the tic, putting just enough pressure to spin it around and around, rubbing in little circles with the tip of your fingers. Don't overdo it so you "break" or kill it(!), just keep at it, and less than a minute (usual, it varies) the tics simply lets go, and you can pick it up from the skin, alive. Ok, just wanted to pass that on, maybe you can use it.

Kudos for all the documenting and the testing! I hope it comes back it was a healthy little tic. I know the worry - I missed a tic on "my" smallest daughters belly and it feels terrible...