Monday, August 26, 2013

Chlorotoxin

It's been a busy several days. Rested for a bit, then headed up to Friday Harbor to attend a memorial for one of my classmates. Tough stuff. I made it home Saturday night, just in time for the arrival of my newest additional treatment.

My parents arrived in Seattle at around midnight this Saturday. They had traveled to procure a treatment called chlorotoxin. They got it from a clinic, and I know some of you will think we're crazy because there's only anecdotal reports, but who cares. Why not try it! The worst thing that could happen would be a lowering of the inflammation in my body and at best it could cure me.

There's an actual protocol to follow, and please know that the clinic that they went to was incredibly thorough, wanting all of my pathology, radiation reports, blood work, among other stuff. Before my parents even flew out on their journey, the clinic in had reviewed all of my medical history. In fact, this clinic had the most thorough evaluation of my medical situation out of all my dealings with doctors.

So yesterday morning I began my treatment journey with the chlorotoxin. It will last for three months. I have four times a day that I measure out 25 ml of my dilution (it's suspended in distilled water), I hold the amount in my mouth, swishing it around under my tongue for one minute, then I swallow it. Also, four times a day I use a different dilution (much more concentrated). I lay on my back and suspend my head over the edge of the couch, using the camera app on my cell phone to direct the dropper, I release two drops of the diluted chlorotoxin liquid into each nostril.

The first time I did the nasal drops, we had used the same syringe to extract the pure cholorotoxin and put it in the distilled water. Not remembering that, when I had the first drops I'm pretty sure the entire green lake area heard a guttural scream. My eyes instantly released streams of tears, and I barely kept myself from sneezing. The burning sensation eventually lessened and I was fine. About 10 minutes later my right arm and hand started acting very, very weird. Not like a seizure aura feeling (which I also feel in my right hand), but just a very, very odd sensation. Then, there was a rushing, like waves ebbing and flowing between my fingers, my hand, and my elbow. Then, like a fog lifting, I could feel my hand again! My hand was healed! It felt magnificent. I couldn't believe it!! We looked at my two hands and on my right hand we noticed the pads of my palm, along with my pinkie and ring fingers, were bright red. Lot's of blood flow happening. We reminisced about how I couldn't feel my right hand after the first surgery, back in 2010, and it felt so weird that I never wanted my hands to touch, or hold Dan's hand - or really use my right hand at all. A real tricky situation for a right-hander. It got better before the second surgery, but again in October of last year, after the third surgery, my hand was funky again. My right hand, arm, leg, and foot are all off, and as far as I can tell it has not been getting better. Anyway, for a brief few moments, perhaps even five minutes, I felt normal again. But, as things go, the sensation faded, and as it did, my arm, hand, leg, and foot became exhausted. It was as if I had just finished a full marathon without ever having trained.

I haven't had a repeat of the healing episode during any of my other applications, but we believe that's because I accidentally had a stronger dose at the onset. All of the other times that I've ingested the drink, or used the nasal drops, have been innocuous, but since I already know from the inception dose, that this is not just a random treatment. At times it feels like it's just distilled water, because there's really no taste, but there's definitely something about this stuff. Even if it was just working on lowing inflammation, I'm happy with that. And if it was cleaning out tumor cells, then Hell Yes!!

So, I'm adding this treatment to my newcastle disease virus treatments. (The clinic says that the chlorotoxin does not interfere with immunotherapies, chemotherapies, or radiation. In fact, they work synergistically.) I have a three month supply, and although I have 8 applications a day, it is already getting me into a fabulous routine. I can do the drink, and the nasal drops at the same time so I only have to get to the kitchen at 8, 12, 4, and 8. They want me to eat a low fat diet (the exact opposite of the keto - isn't that how it always works), and vast amounts of raw vegetables and fruits. No alcohol and no smoking are the directives which will not be a problem. I'm very excited for this phase of my cancer life. I thrive on routine, and I love a good challenge.

A HUGE thank you to my parents for doing incredible amounts of research, corresponding with the clinic, and then of course for traveling all the way to procure the chlorotoxin.


Here's a photo of my first shot of venom. Delicious :)
You know, this chlorotoxin thing sounds crazy. We first learned of it back in 2010, but it seemed outrageous. However, the real turning point was when family friends who were dealing with their cancer at University of Washington had a conversation with their oncologist, and he mentioned that clinical trials with the chlorotoxin are underway at the university. It's not to drink it (of course, that would be too simple), instead they are working with a form of synthetic chlorotoxin (gotta do synthetic so that they can patent it), to paint tumor cells to increase accuracy during surgeries. Anyway, I don't know the whole story on that, but when we connected those dots we immediately decided we needed to go to the source, and give this stuff a shot. We refuse to wait for years, and years, perhaps decades for clinical trials to become standard of care.

Hopefully this chlorotoxin is cleaning out the inflammation, and cleaning out the tumor cells. I'm very impressed by my accidental overdose with the nasal drops, the reaction was nothing less than a miracle. If my parents and Dan hadn't been there to witness, I think I would have ended up over time discrediting my own account. It's just too wild. But it did happen, and I'm pretty excited about it.

Below is an interesting article about the chlorotoxin. The more you research it, the more anecdotal articles that you find. There's not a lot of empirical data out there, but that doesn't mean that it doesn't work.

2 comments:

  1. Well done you! What fab parents you have and I know some people will doubt this kind of treatment but you have to try every option before discrediting anything. I have everything crossed that this works for you. How fab that even if only for a short time you got your feeling back in the right side that is amazing!
    I'm so proud to call you my friend Jess you are an inspiration and you just never give up.

    You go girl and don't let anyone tell you different!

    Big hugs

    Lynda
    Xxo

    ReplyDelete
  2. WooHoo!! So glad the 'rents made it back through Customs with the venom in tow! Cheers for initial success, and fingers crossed for total annihilation of tumor cells!!!

    Lots of Love,

    John, Steph and Little Miss O

    ReplyDelete

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