Alter Everything

Through the Looking-Glass

"Would you tell me, please, which way I ought to go from here?"
"That depends a good deal on where you want to get to," said the Cat.
"I don’t much care where--" said Alice.
"Then it doesn’t matter which way you go," said the Cat.
"--so long as I get SOMEWHERE," Alice added as an explanation.
"Oh, you’re sure to do that," said the Cat, "if you only walk long enough."
(Alice's Adventures in Wonderland, Chapter 6)

As I write this, I am surrounded by magazines...FAT, juicy, stylish magazines with cover shots of fresh oranges, skinny waists, and famous celebrities.

Break Your Bad Habits! --one screams.
Fresh Start! --says another.
Start the New Year Bright!--beckons my favorite.

They're all different, but hopelessly the same: tuned in to my desperate need to improve, conquer, elevate, and perform.

Each January, I plunge into the abyss...usually driven by something ridiculous, worthy, or unreachable.

One year, I was determined to wear size 3 Ann Taylor Loft jeans.
Another, I vowed to write every day.
Another, I took on making a certain amount of money during a certain period of time.
Last year, I launched operation "Get healthy and document it."

I failed. 
I also succeeded.

When I started writing this post in January, I had very specific reasons:

1.  To let you know I was going to be quiet for a while.
2.  To declare 2012 the year of "Being" not "Doing."
3.  To create some semblance of a normal life...away from message boards, computers, and 24/7 Lyme Disease.

The choice was purposeful.

Inspired by this post, by Shauna James Ahern (aka: Glute-Free Girl), I was tired... 

Tired of observing...not living.
Tired of discussing tests, doctors, and medications.
Tired of trying to make the best of, or shed light on, an exhausting situation.
Tired of sharing more with strangers on the internet than with my friends or husband.

There's a lot I could discuss about my health:

• the $1,000 I just wasted because my Neurologist ordered the wrong MRI
• my pancreatitis filled Christmas and New Year
• my Citrobacter infection
• how I diagnosed my own parasite problem by comparing this photo of my leg to this one on the internet
• the wonders of Albendazole
• how shuddering in my sleep has divulged into full-out mayhem
• how I'm being evaluated for MS
• the unbelievable ecosystem thriving inside me

I won't.

Partly, as Shauna puts it, for survival. 
Mostly, to make space....

for what I need
what I want
for the me that's quietly bubbling up to the surface.

More than ever,
I miss life.

I miss creativity.
I miss participation.
I miss normalcy.
I miss generating some-thing and no-thing.
(and having the energy to do it)

For a while, this blog filled that space.
Now,
there's this gap.
Only, instead of rushing to fill it,
I've been listening...

for joy,
purpose,
and inspiration.

It's not easy--folding life into pain.
Despite deep discomfort, or perhaps because of it, I ache to create, express, and contribute.

How to do that when my body runs like a Ford Pinto being held together by duct tape?
That's another question.

Don't worry.  I'm ok.
(or, as ok as I can be...Ford Pinto and all).

Just re-evaluating,
conserving,
striving to l-i-v-e
(instead of exist),
and thinking....

mostly about this...

A strange thought for a girl obsessed with altering....

Day 280: Leap

Source

Bottoms up. It's official. Last night marked my last dose of Ivermectin. I made it out alive...even if it was by the skin of my teeth. Thirty days on enough medication to dope four horses--I'd be lying if I didn't say I'm pretty impressed with myself. 

Now, the true test.

Was it worth it? Will it make a difference? Will my wormy Mcworm worms stop making an appearance? And, most importantly, will I start to feel better?

Truthfully, I'm nervous. In the last two weeks, I feel like I've regressed six months with pain, exhaustion, neuro symptoms, everything.  To complicate things, I've been off antibiotics for over a month (is that making things worse?). Hopefully, it's not a sign of things to come.

Friends keep telling me I'm brave...trying new things, charting untested waters, embracing alternative therapies.  Deep down, I'm praying.  Please let GU be the answer. Or, UVBI treatments. Or, killing yeast. Or, whatever. I don't care...so long as it's helping.

So here's the plan: Today-Sunday, go med free, see how I react, get the junk out of my system. Then, Monday, start a whole new routine--this one lasting five weeks.

To win this game requires lots of things...skill, luck, intuition, strategy. I've tried the skill and strategy part. Now I am hoping luck and intuition have their say.

Fingers crossed....for all of us.

Altered Today: Jumping into the future

Day 254: Shaky Vision + Parasites + Colonics + Ivermectin + Lyme

Ask anyone who knows me, they'll tell you: I'm one tough cookie. If you ever see me coming out of a doctor's office, looking like a deer in headlights, ready to cry, it's safe to assume something's wrong. I don't freak out easily.

Over the last year, I've had a lot of stuff happen: I've been unable to walk, fallen over from pain, choked/convulsed in my sleep, lost my ability to speak, cowered from light and sounds, had what felt like a heart attack, but nothing like this.

One minute, I was humming along...getting a colonic (to correct my blurry vision). The next, everything looked like this...

In disbelief, I stared at the tech's face, her lips and mouth out of focus..

"Ok...time to get off the machine.  Tissues are here if you need them," she said.

"Something's wrong. Your face is moving," I thought in my head.

Me (trying to process what was happening): Something's not right. My vision is shaky.
Her (seeming more concerned with liability than my actual health): Once you're off, I'm sure you'll feel better.
Me (starting to panic): You don't understand. The room's vibrating.  Are my eyes shaking?
Her (more impatient than concerned): Maybe a little.
Me (getting worse by the minute): I need a doctor.

The next 10 minutes are a nightmare: trying to get off the table, go to the bathroom, walk without falling, get dressed, and find someone who cares.  In truth, she just left me there. Luckily, my LLMD's next door.  Wide-eyed, I stumble over into his hallway.

"Dr. K," I catch him before going into a patient's room. "Can we talk?"
"What's wrong?" he says.
"I can't see straight. Everything's shaking."
"Don't panic," he says.  "It's the lyme. It will pass."
"But, I am on high doses of Ivermectin...remember?  Are you sure it's not toxicity?"
"Hmmm..." he says, looking into my eyes.  "Cut back the dosing and sit down 'til it settles. Martha, can you help Kathy to the IV suite?"

On the way, I run into trusty sidekick who has a different reaction. She knows something's wrong the minute she sees me.

"What's going on?" she says, staring at my face.
"I don't know," I answer. "I can't see straight."
"Stick out your tongue.  Let me see your eyes.  Have you been to an Opthamologist?" she questions.
"No. Should I?"
"Maybe...just to be safe."

For a minute, I give her the low down: Ivermectin, blurry vision, colonic.

"I'm worried I'm poisoning myself," I say.
"You are," she answers. "We just need to see if it's too much..."

Reliably, she writes out a lab order to check my liver enzymes. She also suggests I contact Nurse Andi...the one who recommended my parasite protocol. Per her instuctions, I sit and drink herbal calm tea, in a room surrounded by IV patients.

It's been a rough few days: passing parasites, doing enemas, taking detox baths, getting colonics.  It's one thing to talk about parasites, poo, having a good attitude, horse medications, etc. It's another to have the world flash in front of you and nobody knows why. Is it dangerous?  Is it going to stop? Is it from the meds? Is it just another kooky Lyme thing?

I came home and slept for five hours. REALLY, I wanted to write about colonics and share my experience with you, but for now it's too much.  In summary, I will say this: open is better than closed, the first one's really rough, I feel like somebody tore the stuffing out of me.

I was warned to be careful. "Colonics can really stir things up," I was told. Yes, my favorite earthy crunchy friend....It totally has.

Altered Today: Vision, Wormload, More Worries Over Medication

PS  Nystagmus (a condition that causes the eyes to make rapid, repeated, uncontrolled movements) is what I believe I experienced today. To quote bettermedicine.com: "Acquired nystagmus may be a sign of a serious medical condition, including severe head trauma, toxicity, stroke, or inflammatory diseases or other conditions that affect the brain. Seek immediate medical care (call 911) if you, or someone you are with, has a sudden onset of nystagmus."

PPS Nurse Andy thinks my nystagmus reaction is from a B12 & thiamine deficiency -- a common problem for people with parasites. She wants me to start B12 shots immediately. I'm not so sure.

Day 249: All Hat No Cattle...The Ivermectin Herx Hunt

www.lostateminor.com

Day six of Ivermectin and I feel... well... ordinary. No crazy stomach stuff. No mass exodus of visitors.  No unscheduled trips to the ER. 

Is it bad to be just a WEE bit disappointed? 

Not for nothing. I'm not looking for some great disaster.  But after a week of worrying and countless emails from friends asking begging me not to take it, I expected SOMETHING (horrible stomach pain, intense gurgling, a third eye, purple pee).  Makes me wonder....Is my medicine a dud? Am I doing it wrong? Will this stuff even work on me?

Tonight, I upped my dose (again)--now to 3/4 the recommended amount.  In an effort to save my liver and end my thrushy, McThrush problem, I've also stopped taking antibiotics.  Killing yeast and parasites is a big enough job for one body...just my opinion.

One a side note:  Diflucan is kicking my A$$.  The arm/pin prick pain is out of control. Don't know why in my head pain = progress, but it always makes me at least feel like something's happening.  Feel free to read debates about the no pain, no gain theory here and here and here.

6 days down.  24 more to go.

Altered Today: Dosing and, hopefully, a worm death count

Day 246: What Stupidity Looks Like

 

Since the age of 10, I've been allergic to cats.  Not soooo allergic, that I can't be in the same room with them, but allergic enough not to cuddle and DEFINITELY not to touch my face afterwards.

Still, when Meeno visited my bed last night--purring, loving, excited--snuggling didn't seem like such a bad idea.  For 20 minutes, she pushed her head into my hands, made air biscuits with her paws, and nuzzled my neck....which of course required some eye rubbing.  Did I mention I shouldn't be doing that?  Anyway, this is what stupidity looked like this morning.

No...my eyes are not usually this swollen.

Since Tuesday, there have been other--less obvious--acts of foolishness:

1. Consuming 1/2 a bagel...in case the Ivermectin killed me
2. Devouring an entire box of cinnamon cookies...despite having a killer thrush infection
3. Not drinking green smoothies for two days...although they are helping
4. Trying chocolate....to revisit the impact of cocoa
5. Going all day without food or drink...in order to get somewhere

I had good reasons: Convenience, Comfort, Curiosity.  Still, none of it made any logical sense.  Yeast is bad. Green drinks are good. Sugar feeds thrush. Caffeine (cocoa) makes me crazy. And eating is vital.  Not at all like my food Nazi self.  Have I suddenly lost my mind?

Makes me wonder (sans the cat stupidity which is normal), who's doing the thinking these days...me or the bugs? For a couple of interesting thoughts on how parasites and yeast control behavior, click the highlighted links.  In the meantime, I'm going to chain myself to the sofa.

Altered Today: Appearance, New problem...how to control myself--especially when I think I am

Day 231: My Next Read: The Woman with a Worm in Her Head

The topic of parasites doesn't interest everybody.  As a sick person who's infested, I can gauge pretty quickly who's curious, who'd rather not hear about it, and who's got their head in the sand.

Conversations with doctors and non-lyme friends regarding my unwelcomed guests have resulted in various responses:

"Are they dead?" one person asked.
"I think you're reading too much," said another.
"Man, whatever you have, I don't want it," others have commented.

Some, explain away or minimize the issue:

"It's probably just apple skin," one justified.
"You're not in a third-world country," another noted.
"Everyone passes undigested food particles." reasons another.

It often leaves me angry and frustrated.
I've had 40 years experience with bowel movements, breakouts, gas/stomach pains, etc.  These ain't that.


Don't people realize I remember what it's like to be healthy?

Thankfully, books like The Woman with a Worm in Her Head & Other True Stories of Infectious Disease address the issue.  Just reading the first chapter or so on Amazon totally made me smile.

“I know the smell of a staph infection (mousy, musty, rancid), and how to see the gaps that tell me there’s a parasite living in your brain: gaps in words you want to say, gaps in a movement of your hand, gaps in your gait.  I can tell some disease by touch. If there’s a lesion on your skin, I’ll close my eyes and pet it with the flat part of my right index fingertip, the finger that can tell if what lies below is alive or dead, patient or invader.”  
-- Pamela Nagami, M.D.

Now that's a lady I'd like to go to lunch with.

Altered Today: People I'm intrigued by, what goes on my bookshelf

Day 230: Warning. Gross Things are Coming.

 

My Acupuncturist:  Your heart's out of balance.
Me: How do you know?
Her: Your face is red and you talk a lot. 
Me: Really???
Her: Yes.  Now, show me your tongue.

And round and round we go.

Turns out, my tongue is disgusting. Something I knew going in, but her reaction confirmed it. In her words, it is exhibiting signs of both heat and dampness (white fur=dampness; red dots=heat).

See what I mean?


I know. Lovely...
 
The tip tilts down; the end is red.  In Traditional Chinese Medicine that indicates heart imbalance, dampness with heat. In Western Medicine that indicates oral thrush (candida overgrowth).  Either way, it's not good. It's also starting to burn--yippee. Time to bust out the coconut oil and do some oil pulling.

On a separate note, treating for parasites (both with meds and acupuncture) is bringing interesting results. For a while, I've seen all sorts of things "exiting the building," but today's find proved most fascinating--three different types of something: one papery, one worm-like, and one resembling algae. I'm starting to feel like a CSI Investigator.



Not bad for a girl who's got nothing wrong with her...LOL.

Altered Today: Sharing the yuck, realizing I need a manicure and a lip wax

Day 220: Lyme Disease or Gu? Does Ancient China Hold The Cure?

When you're chronically ill, you research things. You examine your diet. You log symptoms. You look for patterns. You check out cures..anything to help you understand and fix what's happening to your body. 

Since becoming ill last August, I've devoted nearly every waking hour to researching or discussing chronic illness.  I've studied juicing/nutrition, explored acupuncture, learned about Lupus/Chronic Fatigue/Fibromyalgia/Lyme, treated with conventional and alternative doctors, and have explored several books/protocols/medicals articles, including:

• Women's Bodies, Women's Wisdom
• The Healthy Home
• Advanced Topics in Lyme Disease (ie: Burrascano's Protocol)
• Lyme Disease: A Look Beyond Antibiotics, by Dr. Klinghardt
• Insights into Lyme Disease Treatment: Thirteen Lyme-literate Health Care Practitioners Share Their Healing Strategies
• Dr. Cowden's Protocol
• A Recipe for Repair

        ...And many, many more.

I took something from all of them.  One helped me better understand the complexity of illness.  Another explored the mind/body connection to healing.  Another raised my awareness about the healing power of herbs/foods.  Another helped me feel I wasn't crazy.  And on and on and on.

None, however, captured my experience (or struggle) perfectly...that was until I started reading about Gu (thanks to my friend Dr. Tara Reed, Acupuncture Physician).

According to Tara, Gu Syndrome -- which was studied significantly in ancient Chinese literature -- points to various parasite infections.  "We're not speaking of intestinal worms/bacteria from a recent trip to Mexico," she said.  "We're talking something dormant, sometimes for many years, which rears its ugly head slowly over time.  A long-term, insidious infection."

"Gu Syndrome was thought to be a demonic possession in ancient times," Tara pointed out.  "With no microscopes to see the spirochetes, virus bugs, etc and the character/personality changes those infected can sometimes experience, what else would they call it?  Some people, of course, could feel things inside their body and would say so.  Back then, that would seem like possession.  This is why it's not in standardized Chinese Medicine Education (it was eliminated).  It sounds crazy to treat someone for that..." 

Luckily, Heiner Fruehauf, Ph.D., L.Ac. was determined to learn more about parasites and preserve ancient methodologies. After discovering a certain percentage of his patients weren't responding to traditional acupuncture treatments, he took time to study/translate ancient Chinese texts and then used them to treat modern day parasitic infestations. The result? Groundbreaking research in the field of chronic illness and success in treating complex patients with ancient herbal formulations. 

If you (or someone you know) are suffering from Lyme Disease, MS, Fibromyalgia, Chronic Fatigue, ALS, Autism, or any other Undiagnosed Chronic Illness, I urge you, read this important article from The Journal of Chinese Medicine: Driving Out Demons and Snakes, Gu Syndrome, A Forgotten Clinical Approach to Chronic Parasitism and the follow up interview with Heiner Fruehauf.

It is not a quick fix or easy answer, but it will shed light on why treatments fail, diseases get misdiagnosed, and the complexity of parasitic illness.  A complete protocol is also included (if you're interested in that).  Honestly, it's one of the most insightful things I've ever read.

Thank you so much Tara for providing this invaluable resource. I can't wait to see how it impacts you, your practice, and the fate of chronically ill people everywhere. So much love for who you are....XOXOX....

Altered Today: Knowledge