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.

Case Study Pt. 2

Summary

  • AmpCoil Usage: 6 months
  • Cadence: ~Every two days
  • Sensitivity Setting: Low

Note: I can’t testify to the AmpCoil’s efficacy as a stand alone treatment, as I am integrating it into my existing protocol of supplements, diet, and acupuncture at the direction of my medical team.

  • My Medical Diagnosis

    • Polymyositis
      Lyme disease

  • Quantitative Data

  • CK after four months of coiling: 118
    • The only data point with a direct correlation to polymyositis is the Creatine Kinase (CK) enzyme. Anything below 173 is considered normal
      CK immediately prior to receiving the coil: 230

  • Blood pressure has not decreased bellow 88/60 since Pt. 1

  • Weight bearing endurance has returned and slightly surpassed personal bests pre coil
    • I could not stand on my legs without collapsing for the first three months of coiling. I believe this is due to the combination of Rxs and coiling
      At the 6 month mark I can bear all of my weight for 29 minutes straight

  • Qualitative Observations

  • Hive outbreaks occur for the first time in my life
    1. First few incidents were small, red, itchy, mosquito bite sized bumps from head to toe. They appeared the morning immediately following a coil session
      The next few times only one side of my body would break out- either left or right. Again, usually appeared the morning after coiling
      For the first time I had an outbreak without coiling, immediately following a rigorous hydrotherapy session. This is the first indicator of a frequency therapy triggered “shift”, as my own body movement pushed the allergen to my skin’s surface
      A few weeks later the hives became welts. There were fewer, larger, sores (not itchy) on both sides of my body
      I began drinking food grade Montmorillonite clay once per day and haven’t had an outbreak since
  • Note: hives are a natural “allergic” reaction to something. These allergens have been deeply embedded internally and my body expelling them to its outermost organ (skin) is a very good sign
  • Sleeping deeper on non-coil nights
    • The “Immune Boost” and “Organ Tune-Up” tracks prompted my deepest sleeps before bed but on recent occasions I’ve experienced the same depth on nights when I don’t coil

  • User Experience

  • The General Detox series is the best place to start cleansing and I believe is what provoked my “shift”
  • 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.

    Is butter a carb?

    Regina George couldn’t fit into anything except sweats before realizing that her diet wasn’t working. The Swedish “nutrition” bars she was eating made her gain weight rather than lose it. Initially she questioned their efficacy but her commitment to the calorie-burning-crusade overrode her better judgment.

    In February, I started taking a prescription called Mepacrine. It’s typically used to treat malaria and lupus but my doctor has seen it work for other autoimmune patients so he urged me to give it a try. I didn’t take this decision lightly because the side effects are notoriously rough but the potential for improvement outweighed any hesitation. Oddly enough, one week on it and I hadn’t felt a thing. (That was the first flag I missed: if a new supplement, tincture, or prescription works for me, I feel it right away.) After ten days on it, I woke up unable to stand or bear any weight on my legs for the first time in my life. It was terrifying.

    I got a blood test and it was nearly perfect. My creatine kinase enzyme (CK) was in the normal range for the first time in six years and my liver wasn’t bothered by the harsh Rx at all. Numerically I was responding well so my doctors and I decided to lower the dose and stick with it for another month to see if my symptoms would subside. My blood work kept improving but my paralysis didn’t and the recommendation was to stay on it.

    If I could scream as loudly as Regina did when she discovered the nefarious plot to destroy her body via Kalteen bars, I would have. Something in my protocol was broken and what little functionality I worked so hard to hang on to through this ordeal was slipping away. That’s when I decided to stop taking the Mepacrine. Eight days later I took my first steps since February.

    My first blood test since pausing the prescription is two weeks away. I’m prepared for both possible outcomes: (1) my CK enzyme bounces back up above the normal range or (2) it stays normal, and is possibly even better than last time. If it’s #2, it will be my third consecutive month below 173 and I will have technically beat polymyositis… I’ll be in remission.

    Either way I’ve still got some work left to do. If my immune system isn’t attacking my muscles anymore, what is? My doctors, acupuncturist, and the AmpCoil voice analysis are all in general agreement that there’s a virus at the crux of my paralysis. I trust this team. I trust this process. But I also trust my curiosity and will be enlisting another pair of eyes to review my case at the Mayo Clinic in Phoenix. Cautious optimism is the name of my May game so keep the good vibes coming. Onward and upward!

    Case Study Pt. 1

    Being this sick drains bank accounts every day. So when I came across this $8,000 frequency machine you bet I dove head first into any information I could get my hands on to validate its efficacy. I scoured the AmpCoil website, user testimonials, interviews with the founders, and I joined a closed informational Facebook group.

    A lot of what’s accessible is anecdotal or qualitative- which is super valuable. The Wellness for Humanity Foundation has some data from grant recipients, AmpCoil is in the initial stages of facilitating third party research, and I could find bits and pieces of people’s journeys but I still found myself wanting a more comprehensive, individual account with specifics. So my biggest goal in taking my PEMF experience public was to provide an additional resource for people debating an investment in their own machine. In the four months that I have an AmpCoil unit on loan I’m aiming to publish a three part self analysis of my progress. I truly hope it helps in your decision making process!

    ***All data and opinions expressed below are independent and not influenced in any way by outside entities. I am not a physician or health care professional.

    Summary

    The AmpCoil works. If the human body is a piano with keys out of tune, you can think of the AC as the tuner that will tweak the vibrations until the intended melody is restored. The diagnostic app is as incredible as you think it is and while it was designed to help those with Lyme disease it is equally equipped to address the complexities of other immune diseases and more common ailments like head aches and food poisoning. Note: I can’t testify to it’s efficacy as a stand alone treatment, as I am integrating it into my existing protocol of prescriptions, supplements, diet, and acupuncture at the direction of my medical team.

    My Medical Diagnosis

    • Polymyositis
    • Lyme disease
  • Quantitative Data

    • The only data point with a direct correlation to polymyositis is the Creatine Kinase (CK) enzyme. Anything below 173 is considered normal.
      CK immediately prior to coiling: 230
      CK after three weeks of coiling: 162
      CK after eight weeks of coiling: 140
    • Considerations: I had plateaued around 400 for two years but my CK had begun declining again prior to coiling. That said, a 68 point drop over three weeks is quick based on my history.

    • My body temperature has increased. Pre coiling I became uncomfortably cold in environments below 78 degrees.
      76 degrees has become my new baseline since coiling began.
      I’ve run two fevers of 100.8 and 101.0 for the first time since becoming chronically ill, six years ago.

    • Migraine recovery time decreased by 50% in my only episode post coil. On 1/29/19 I had one of the worst migraines I’ve ever had– pain level 7.
      Pre coiling it took ~15 hours for one of these to dissipate completely.
      The “Headache Help” and “Herx Help” journeys provided relief after 7 hours.

  • Qualitative Observations

    • Sleep improves in depth and duration immediately following the “Immune Booster” journey.
      Blood pressure ran low (~87/52) during 10 day cleanse but returned to normal following supportive journeys.
      Major Herx was triggered during detox cleanse but is slowly fading after completion of 10 journey protocol.
      Paralysis has worsened by 2530% since beginning to coil. My Monocytes are up 30% from their average of 8 indicating an influx of white blood cells to fight infection. Given that all other panels are normal or improving my team believes this decline in movement to be temporary.
  • User Experience

    • Ramping up is tricky. There are a lot of journeys intended for numerous purposes and it can be overwhelming if you don’t have a game plan in place. I’d highly recommend reading through the user guide and discussing the options with an alternative medicine professional you trust.
      If I could give AmpCoil any constructive criticism it would be that their Quick Start Guide needs a makeover. The current format is primitive; you’re literally looking at an endless Google Doc in small, single spaced font. In a perfect world I envision a physical booklet, with easily digestible instructions organized in sections, with headers, by priority. In it’s current state it’s easy to miss vital details like, “you should only coil every other day for no more than 90 minutes a day.” That should be upfront, in bold, and on its own page. Each journey grouping should have its own section with detailed descriptions and instructions. These exist as is but are difficult to keep straight without clear distinctions.
      Once you have your footing it’s is a pretty smooth process. If you’re severely chronically ill I highly recommend enlisting a friend or family member to help you track symptoms and set up the hardware for each session as it’s very heavy. (You rock, Ash!!)

    GIRL

    Do you remember when Lucy and Ethel got jobs at the candy factory? It was smooth sailing at first: pieces of candy came down the conveyor belt for them to grab, wrap, and return them with time to spare. Then their supervisor cranks up the speed and chaos ensues. Bon bons are piling up, wrappers are flying, and despite their hilarious efforts, the girls are not invited back for a second shift.

    Sometimes it feels like I’m standing in front of a conveyor belt at a lemonade factory. One by one I grab a lemon, cut, and squeeze the juice into a bottle. Since becoming ill the belt speed has consistently fluctuated from manageable to frantic and everything in between; as it turns out, I’m pretty damn good at turning lemons into lemonade. It’s a daily decision to proceed with realistic optimism and ground my emotions with science. It’s rare that I slide into a funk. That said, I recently found myself up to my eyeballs in citrus fruit, armed with only a dull knife.

    What you feel is natural

    But I don’t wanna feel this anymore

    Pick yourself up off the kitchen floor

    What you waitin’ for?

    The last two weeks have been the worst two weeks of my autoimmune ordeal. I’m talking worse than Election Day 2016, meningitis, and The Ranch… combined. I woke up on February 12th and couldn’t stand — I couldn’t bear weight on my legs, I couldn’t raise a cup of water to my mouth, I couldn’t move.

    Now, “prepared,” is my middle name. Whether I was facing final exams, a client meeting, or a first date, I went in ready to crush it while remaining astutely aware of the worst case scenario. When you have a plan B, C, D, and E, shit’s not as scary as it’s splashing you from the fan. But I wasn’t prepared for this drastic regression. I have already been there, done that, lost my old life, and will do everything in my power to never let it happen again.

    Girl, won’t you stop your cryin’?

    I know that you’re tryin’

    Everything’s gonna be okay

    In addition to the extreme paralysis a few new symptoms popped up. I ran fevers after not having had one in half a dozen years. Severe body aches (like, tear-inducing aches) and night sweats came on strong. If these sound familiar, it’s because they are indicators of a functioning immune system. On Valentine’s Day I got quantitative confirmation of this via blood test results. For the first time in six sick years my Creatine Kinase level is in the normal range.

    This is big. And it strongly supports my team’s theory that in retraining my immune system to stop attacking me, it’s now free to tackle what made me sick in the first place. I worked my ass off to get my CK below 173 from 6,000 and it’s bittersweet that my anticipated celebration was derailed by a sudden slump. But as of two days ago I can stand again!

    The reality is that my current trifecta, PEMF therapy, acupuncture, and an intense Rx, packs a punch by design. I have no doubt that the AmpCoil has accelerated my arrival into the normal muscle enzyme realm; I just finished a 10-day detox frequency cleanse and am switching to supportive tracks for a week or two to stabilize. Cheers to moving onward and upward🍹.

    Baby, girl don’t you hang your head low

    Don’t you lose your halo

    Everyone’s gonna be okay

    Baby, girl

    Anthem lyrics are from “GIRL” by Maren Morris

    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!