Oathkeeper

Until recently I was a Game of Thrones holdout. A few years ago I inadvertently caught a scene where a man lures his mother into a kennel of rabid dogs for her to be eaten alive and I thought, “Mmm…pass. Hard pass.” I’m five seasons in now and can’t un-see what I’ve seen. I’m so depleted by the existence of a character like Ramsay Bolton that I’m left with two options: quit now — slightly more than halfway through the whole thing — or see it through to the end. Sound familiar?

Mayo. Mayo, Mayo, Mayo. In last month’s episode I was about to meet a bunch of new specialists and take a bunch of tests. We did so. An MRI, an EMG, a chest X-ray, a spine scan, a swallow test, a blood panel looking for 52 kinds of genetic myopathy markers, and finally an HMGCR antibody test. No new finds; everything that should be negative was negative or as expected. Two specialists at Mayo in Rochester also reviewed the samples taken from my 2013 muscle biopsy. Their assessment, “Diagnosis: 1. Myopathy, active and chronic, with minimal inflammatory reaction,” was in agreement with what Northwestern Memorial Hospital concluded six years ago.

I did learn that modern medicine has uncovered a lot more about polymyositis since my original biopsy. My new neurologist vernacular-shamed me for using that term because researchers have parsed “polymyositis” into a dozen or more subset diseases since I was first introduced to it. That last part of Mayo’s conclusion, “with minimal inflammatory reaction,” makes my case less typical. So there’s that.

My neurologist has suggested that we do a second biopsy next, this time of my tricep. A second procedure would rule out a “sampling issue” with the first one, but he acknowledged that it’s equally possible that we’ll learn nothing new.

While all of that was going on — the testing, the waiting, the ordering, the analyzing — I anchored myself in the AmpCoil. And things started to shift.

Symptoms I’ve never experienced started happening right after coiling sessions… and then they started popping up on their own without provocation from the coil (hives!). This seems to be the purpose of a PEMF device for chronic cases like mine: to align body parts to a healthy frequency over and over again until the body remembers how to do that on its own. Once I realized that I had transitioned onto this ideal trajectory with the coil, my grant was extended (thank you SO much, WFHF!!). You can dive into the details of my “shift” in part two of my self-driven case study here.

I’m not getting another biopsy right now because none of the experts who reviewed the first sample questioned its quality. With all of the other tests coming back okay (this isn’t a genetic issue, there’s no tumor on my spine, etc.), my decision five years ago to abandon the steroids and pursue alternative medicine has been vindicated. My sense of relief outweighs the frustration of there not being an obvious way out.

I’ve come too far and know too much to hit the brakes. I will finish working through the undetectable actors that are holding my muscles hostage; that is my promise. The coil, other alternative therapies, and God’s grace, will get me there. I’ve also got an appointment with a Mayo rheumatologist in September to see if that department has any new ideas.

As with any intense drama, Game of Thrones has its reprieves and one is named Brienne of Tarth. Her swordsmanship, fearlessness, and blatant defiance of traditional gender roles are undeniable. Accompanied by her sword named “Oathkeeper,” she will stop at nothing to do what she has promised to do. Brienne’s heroism is a welcome reminder that nothing can squelch the power of a determined woman… not even the strugglebus.

Thirty Won?

There are three invisible things that will destroy a chronic illness crusader:

  1. guilt
  2. heartbreak
  3. doubt

Doubt is by far the most lethal. Despite all of the support from friends near and far (you’re the best<3), I’ve still been doubted. Doubted by the smartest of doctors, family members with the best intentions, physical therapists, neighbors, you name it.

Early on in this journey, I anchored my decision to defeat polymiositis in science and rooted it in common sense. I put that decision in a bulletproof safe. I installed an impenetrable force field around it. No one’s skepticism gets in and none of my confidence ever leaks out. It’s how my mind and spirit have survived the war within my body for so long.

The last time I posted, my first trip to Mayo was up next on the calendar. Going to meet a new doctor at the top ranked research hospital in the country made me nervous but no less committed to my mission regardless of how it went. Luckily it couldn’t have gone better!

I spoke for over an hour as the doctor feverishly took notes. He looked at my Excel sheets, labs, and was familiar with “alternative” treatments I’m using (acupuncture & PEMF). At the end of the appointment I asked him what he thought.

“I want to take a step back and completely re-do your diagnosis,” he said. “I’m ordering every relevant test: labs, MRIs, X-rays, nerve conductivity, etc. I want you to see a neurologist, rheumatologist, an otorhinolaryngologist, and a physiatrist here. I want to hear their unbiased opinions and look at all of the new data. We’ll decide where to go from there.”

From his office we went one floor down to the Mayo lab where they drew more vials of blood than I’ve ever had drawn in one sitting. An hour later I got a notification that my Creatine Kinase results were in: 118. This marks the third consecutive month it’s been normal so according to my blood, I no longer have polymyositis.

Results continued to flow into my inbox without any alerts of abnormalities. No deficiencies, no outliers, no alarms. Suddenly I felt a massive surge of self-induced doubt flow through me for the first time; my thoughts took off before I could stop them. ‘How is everything normal?!’ ‘Why don’t I feel normal?’ ‘Why can’t I move?’ ‘If Mayo can’t find anything wrong with me no one can.’ ‘I’m fucked.’ ‘If we don’t know what I’m up against, I’m fucked.’

It was a full blown panic attack complete with a Kim K. ugly cry. A few days later triathlete/Lyme fighter, Angela Naeth, reeled me back in with her recent article for Triathlon Magazine Canada. “A good mental mindset starts with self-belief. Self-belief is the core of who you are. You have to believe in yourself first. If you don’t, that’s when everything falls apart.” Real talk: I was due for that breakdown. I won’t apologize for letting a ridiculously difficult, agonizingly terrifying, frustratingly elusive, health crisis get to me after six years of keeping my shit together. But Angela is totally right: my belief in myself is the core of who I am. And I am the problem solver who was built to beat this — whatever “this” is.

I’m spending my first week as a 31-year-old being scanned, stabbed, and analyzed at Mayo. And there’s truly no place I’d rather be. I’m most eager to meet the neurologist who will likely be able to tell me where I stand with the polymyositis once and for all (remission?!). If there were ever a year for my birthday wish to come true let’s hope it’s thirty won.

Shift Happens

When I first found out about the AmpCoil I mentioned it to my local primary care physician to get his perspective. “Is it like an ab cruncher? Is it going to give you a six pack?” Not everyone possesses the desire to learn about new things. But you are here, which means that you want to better understand what I’ve been up to so…woohoo! Let’s get this party started.

What is an AmpCoil (AC)?

It’s a machine that emits pulsed electromagnetic vibrations tuned at different frequencies. Consider an MRI: a magnetic resonance image used to diagnose injury within the body. It uses powerful magnets to align our protons with their frequencies (yes, actually manipulate them) and measures the energy they emit once the field is turned off. We’ve been using magnets to diagnose since 1977 and while using them for treatment has been around longer it’s still very uncommon.

Why haven’t I ever heard of it before?

A two day trial of IVIG at Northwestern Memorial Hospital cost my insurance company $38,000. A personal AmpCoil unit that can be used an unlimited number of times, for multiple people, in the privacy of your home, to treat dozens of targeted issues (i.e. the common cold, migraines, depression, fungus, mold exposure, and Lyme) costs $8,000. Ultimately, for the pharmaceutical industry, cash is king.

Woah, that’s still a lot of money. Can you try it before you buy it?

It’s a huge investment upfront. Especially if you’ve never tried it before or, if you have, it was a one-off with your local AC ambassador’s unit. I emailed AC Support to find a rep in my area and used his one time. You don’t necessarily feel the realignment of your cells while coiling but symptomatic changes can occur hours or days later. You can also rent ACs from private individuals or receive treatments at your discretion from a holistic practitioner in your area.

Are there side effects?

Herxheimer reactions seem to be the most prevalent, at least for me. A herx occurs when a large number of pathogens die off all at once and emit endotoxins. Your body gets overwhelmed by what is essentially a poison that triggers temporary nausea, headaches, muscle weakness and other effects. These can be minimized by drinking water before and after a treatment and by taking charcoal binders that gather up all of the yuck and expedite it’s departure. Oh, and just like you can’t have phones or credit cards within a certain range while an MRI scan is being performed, the same goes while coiling. It’s powerful enough to damage the batteries in my power wheelchair so I have to coil exclusively in bed.

So, what exactly does a coiling session consist of?

It comes with an Android tablet and access to a proprietary app.

  1. First, you do a voice test by speaking slowly into the tablet’s microphone for about 90 seconds. The app uses the vibrations in your voice to quantify levels of  frequency imbalance in specific areas.
  2. You’re provided with a prioritized list of things that need realignment. For example, an organ (liver, spleen, etc.), a nutritional component (amino acids, chemical sensitivity, etc.), or a pathogen (Lyme co-infections, fungus, etc.).
  3. Decide what you want to address and select a timed track (or “journey” in AC speak) to run on the machine itself. You can do multiple tracks in the same coiling session, up to 90 minutes per day, every other day.
  4. Find a quiet space away from phones and place the coil in the recommended place, usually the upper torso or stomach. You turn the machine on while it’s connected to the tablet and press start.

Interesting. Is it working for you?

Yes. I’ve been using it for four weeks and feel like my sister and I have the hang of it (I couldn’t coil without her help!). I’ve got 8 treatments left in a series of tracks that I curated myself and want to dive into the specifics of my initial experience upon completion. More to come!

 

 

 

Thank Ute, Next

The 2018 Holiday Bowl was well underway when I woke up from my nap on New Year’s Eve. It was half time and the Utah Utes were leading my Northwestern Wildcats 20-3.

“We’re gonna crush ’em!” I asserted rather sarcastically while wearing not one but two purple shirts. My dad laughed. Every day for five days leading up to this college football match he had reminded me that University of Utah’s Coach Kyle Whittingham was 11-1 in bowl games. “That’s one thing about coach Whitt,” Utes cornerback Julian Blackmon told The Salt Lake Tribune earlier that week, “we don’t lose bowl games.”

My best friend was visiting for the holidays and lobster bisque was on the stove so spirits were high regardless of this pending loss.

“We already know Northwestern’s going to lose,” my friend said at the start of the third quarter. My guys may have had their feet to the fire but their eyes were on the prize. A few favorable fumbles and a couple of uninterrupted sprints later, the Wildcats won 31-20.

Battling chronic illness is a little like managing a football team. Five seasons in, the Strugglebus Babes have faced a rollercoaster of highs and lows but bounce back from a loss with aplomb, like Ariana Grande rebounds from a break-up. As the veteran quarterback, I’ve called the shots on this field from the jump. I feel every hit, celebrate every touchdown, study every play, and most importantly, I follow my gut. Led by a head coach MD Phd, an assistant coach ND, support staff acupuncturist, physical therapist, and hydrotherapist, my coaching staff is solid.

The Strugglebus starting lineup evolves as I take on different opponents. While I’ve got a few tried and true teammates (noted below with an *) I’ve never found the silver bullet — the treatment, pill, therapy, etc. — that brings everything together, dramatically accelerates performance, and ultimately wins us the title of remission. Excluding the *s, these guys have been benched:

  • Prednisone
  • Methotrexate
  • IVIG in large doses over a short period of time
  • IVIG in small doses over a long period of time
  • Gerson therapy*
  • Muscle testing*
  • Acupuncture*
  • Homeopathy
  • IV antibiotics
  • Oral antibiotics
  • Root canal extraction
  • Osteopathy
  • Jawbone cavitation surgery
  • E-STEM
  • OSR
  • Massage
  • Rolfing
  • Cranial manipulation
  • Low dose immunotherapy*
  • Supplements* (200+)
  • Tinctures*
  • Lymphatic drainage
  • Essential oils*
  • Chelation
  • Anti-parasitics
  • Colonics
  • High dose VitaminC IV
  • Ozone therapy
  • Ultraviolet blood irradiation
  • Hyperbaric oxygen therapy
  • Vitamin D injections
  • Chinese herbs*
  • Cupping
  • Something I’ve forgotten

In addition to quarterback I’m also the scout. I got a lead from a friend recently about a therapeutic machine used to treat auto-immune diseases. It’s called the AmpCoil and I have to tell you: I watched one video and sensed it was the real deal. The inventor had Lyme! The catch? Per usual, the best players cost the big bucks and this Babe’s player acquisition budget is tightAF.

Still, I kept digging. How does pulsed electromagnetic field (PEMF) therapy work? Are the testimonials legit? Will there be side effects? What are the odds of winning $8,000 from a slot machine? In my research I came across the Wellness for Humanity Foundation (WFH). It’s a non-profit that awards grants to families experiencing very severe cases of Lyme disease, allowing them to use an AmpCoil machine for treatment for four months. I applied, and won one of their first awards of 2019.

My family and I are stoked to see what the AmpCoil will do for us. I’ll be blogging about our experience here with the hopes of helping those considering making an investment in a unit, those who are new to PEMF (like me!), and those who’ve played too many seasons of the chronic illness game to give another newbie a shot.

Thank you, WFH Foundation for the opportunity to give this a go. I’ve learned a ton from everything I’ve tried (all of the “players” I’ve “played” with) and am wildly optimistic that this AmpCoil rookie could be my superstar MVP. Time to get to work and win this second half.

 

Stay tuned for a comprehensive State of the Union where I’ll outline where I’m starting from: diagnosis, key blood work markers, qualitative info on current functionality, etc.