Eureka

It hit me like a ton of bricks on a regular afternoon at home. My fingers ran wild over the keyboard to keep up with the flood of medical questions that now suddenly needed answers. After a few hours I couldn’t find anything to debunk my hypothesis. Am I crazy, or did I just figure out what’s making me sick?

⏮ To recap: we know that this ordeal started with Lyme co-infections ~8 years ago. No bullseye rash, two false negative Western blot tests, and one *very* positive urine test.

⏩ Lyme bacteria triggered a rare autoimmune disease called, polymyositis– essentially it’s the destruction of the trunk muscles. I was relatively stable (walking, working) for ~1.5 years. And then I crashed. Within three weeks I became almost completely immobile. Something provoked a drastic decline in a very short period of time.

⏭ Over the following six years rheumatologists discovered 12 or so variations of polymyositis, so when I became a patient at Mayo they updated my diagnosis to Necrotizing Autoimmune Myopathy (NAM). It’s even rarer than polymyositis and the only known cause is the prolonged use of statins, which, I’ve never taken.

▶️ Two months ago I started thinking more about NAM. Are there any similarities between statins and any of the conventional medications I tried very early on?

Yes, yes there are. And then it All. Started. To. Click. One of my doctors at the Sophia Health Institute validated the merits of my hypothesis and I’m undergoing treatment right now (it’s treatable!). This will undoubtedly take a lot of time to overcome but we’re definitely on to something. Just four days on a new prescription and I experienced a duller version of every one of my symptoms in the same day, for the first time in 8 years. Prior to this they’d appear sporadically, one or two at a time, and seemingly isolated from one another (making it impossible to identify a pattern). Having my body respond to one new variable with every signal it has is a good sign.

I’m not ready to share the specifics yet; it’s too early in the experiment. But you can count on a full report when I have more results. If it’s good, we party! If it’s a goose egg, I’ll have the next trial underway before you can cancel your membership to the Strugglebus Science Fair. Regardless, thank you for sticking around… I couldn’t do this without the ocean of grace that you’ve afforded me in my healing journey. More to come!

Hot in Here

We’re all familiar with the classic Dateline mystery: the inexplicable disappearance of a small town cheerleader sends shockwaves through her community. Her wrestler boyfriend appears distraught at her candlelight vigil but the detective on this case picks up on some inconsistencies in his interviews. We spend forty-five minutes convinced that he’s responsible until his rock solid alibi comes through. No additional suspects emerge so this time, the case goes cold.

An autoimmune disease is the cold case of conventional medicine. You, the affected, become the detective and try to diagnose what happened with tests and specialists. If you’re lucky, you eventually identify the foul play that’s occurring in your body, but no one can explain “who” (or what) is responsible for it.

By now you probably know that I’m the unwavering detective that refuses to give up on solving her case—no matter how much time goes by. I research, interview, experiment, and follow every lead to figure out why my immune system started attacking my muscle tissues and how to fix it; my case won’t go cold because I won’t let it. And even though I’ve had a few chilly bouts here and there, every dead-end has been followed by a promising detour.

Happy to report that things on my case have been heating up since I uncovered new evidence from Viome. It’s an at-home, gut microbiome test that you can read more about in my last post. I took my first test in December ’19, followed all of their food and supplement recommendations for ~65 days. I retested again mid April. Here’s what changed:

Some anecdotal observations:

  • Food recommendations didn’t change a whole lot from v1 to v2. I was excited for tomatoes, cucumbers, and potatoes to be back on my “Enjoy” list this time.
  • Supplements were completely different in v2. This time they suggested two probiotics, one prebiotic, one mixed polypeptide, Berberine, and Zinc.
  • Gained weight after not being able to break 104 lbs for years (I was underweight for my height). I credit my improvement in protein digestion for this.
  • After being on the v2 protocol for just over a month I got the feeling that I wasn’t taking enough of the probiotics. So I doubled the dose. Now I sleep noticeably more deeply and my voice has been consistently stronger. The white coating on my tongue is vanishing.
  • Hives have been at least 50% smaller, appear less frequently, and go away 2-3x faster.
  • My gut is not in good shape. And ironically, I’m thrilled to have scientific evidence that something is biologically wrong with me! My blood tests are beautiful. My muscle biopsies show an uncharacteristically low amount of inflammation for an autoimmune case…but here is proof that my gut is inflamed.

Last week a family friend reached out to me because her cousin was experiencing an onset of rheumatological symptoms (not COVID) and they didn’t know where to start. #1 on the list of steps I sent her was to take this microbiome test— the faster she can balance out the bacteria in her gut, the better. But my question to those of you who aren’t necessarily “sick” is: why wait until bad bugs overrun your good microbes to do something about it? STEM can now provide you with information that it took disease detectives like me years to access. So, this summer, I hope you’ll take off all your clothes and take this stool test.

***Use STRUGGLEBUS10 to take $10 off of your test. I don’t receive any monetary or product commissions from this code.***

Gut Check

Over the last six years researchers have identified about a dozen more specific types of myositis than previously existed. My updated diagnosis from the Mayo Clinic is Necrotizing Autoimmune Myopathy. The symptoms are the same as with polymyositis but NAM is even rarer, causing less inflammation and higher rates of cell death. The only *known* cause is prolonged statin usage; I’ve never taken statin drugs so it’s clear that my immune system is reacting to something that doesn’t bother the vast majority of other people.

But why do I have NAM and you don’t? And, even more top of mind: why do coronavirus symptoms vary so much from person to person? I think that the answer to both inquiries lies in the foundational truth that, “The human immune system is highly variable between individuals…”.

The first time I started seriously thinking about how my microbiome fits into this was about four months ago. Maria Menounos posted a photo on Instagram about how she was tailoring her meals to a list of her personalized superfoods provided by a company called, Viome. I’m extremely skeptical about sponsored celebrity endorsements so as good as it seemed at first glance, I didn’t buy it right away. I watched a lot of interviews with their C-suite, but this one with Deepak Chopra and CEO, Naveen Jain sold me on it.

In exchange for a tiny scoop of your poop and responses to several health questionnaires, Viome gives you a personalized dataset of (1) superfoods that boost your gut functions, (2) foods you need to avoid or minimize because they promote bad activity in your gut, (3) supplements that will work well for your microbiome, and (4) how you rank — good/so-so/bad — across 20 different gut functions.

Your results are essentially a personalized recipe for balancing your microbiome. Why do you need this? “…The composition of the microorganisms in the intestine…has an influence on the quality of the immune reaction.” A balanced gut means a stronger shield against enemies like the coronavirus.

You don’t need to leave your house or have in-person contact with anyone to submit your stool sample. The only catch is that analyzing every microorganism in your gut takes about four weeks from the time they receive your sample. Given our our current state of affairs I say that four weeks is a drop in the 2020 bucket.

I want to be very clear that this is not a food allergy or food sensitivity test. I’ve taken both and had zero flagged foods. My Viome results, however, showed that foods I’ve eaten daily for years like tomatoes, potatoes, and cucumbers, were negatively affecting me. While my blood tests and muscle biopsies show little to no inflammation in my tissues, my Viome results, on the other hand, showed high levels of inflammation in my gut. In fact, 10/20 of my gut functions preformed poorly, 9/20 were so-so, and only 1/20 was preforming well. You might expect me to be discouraged by those scores but I’m actually encouraged by the potential for improvement.

I’ve followed their exact food and supplement recommendations for almost 60 days. I regained some range of motion in my neck immediately. I can lift my right shoulder a little more than before changing my diet and I can lift a heavier cup of liquid from my lap to my mouth on some days. At the ~30 day mark my acupuncturist said that my pulse was the strongest she had ever felt it in a year and a half. These may seem trivial but any change for the better makes a big difference in my daily life.

I’ve only just begun balancing the ecosystem living in my belly so I’m going to stick with it. Viome recommends doing an analysis every ~90 days for the first year so that you can adjust your intake as your microbiome changes. Ultimately the cadence is up to the individual. I felt a lot of little changes in the beginning and my intuition is telling me that it’s time to retake it now. I hope this is helpful and that you’ll consider how important your gut is in protecting you from pathogens like the one we’re currently facing as a global community. Let me know if you have any questions or if you decide to try it!


Disclaimers

I am not a doctor. I am a longtime patient and I do my research. Sources are linked wherever possible.

I am not an asshole. I know that this test is expensive and that a lot of people can’t afford it right now; I get it and am right there with you. But the coronavirus doesn’t discriminate based on income so I am compelled to share my experience knowing that someone can still benefit from this information.

If I get Coronavirus I’ll probably die. Here’s what I think about it.

As you probably know, my immune system is compromised. And I recently survived a severe case of pneumonia so no, this title is not an exaggeration. I am observing this global pandemic from a unique vantage point and here’s what I think:

1. The virus itself isn’t our biggest problem.

It’s running out of hospital beds, doctors, and medical supplies if too many of us get sick at the same time. Because we’re not testing fast enough the people who have it and don’t know it are stacking up and spreading it. We can help people beat it until the influx of cases exceeds our resources; then we’re in big trouble.

2. Bet on your immune system.

Treating your body kindly will help you fight coronavirus if you need to. Take your supplements. Take extra vitamin C- you can take as much as you want until your stool gets runny, then decrease the dose. Stay hydrated. Get enough sleep.

3. Check your microbiome.

It’s an elusive universe of good and bad bacteria that live in your gut. If the bad guys start to outweigh the good it will stress your immune system out. If you can afford it I highly recommend doing the Viome analysis. Just send in a stool sample and answer their questionnaires. One month later they send you a personalized dataset of what specific foods your gut loves, which ones fuel bad bugs, and how well your microbiome performs twenty different gut functions. It takes a while but why not stack the deck? This isn’t going away anytime soon.

4. Extreme reactions from civilians aren’t helpful.

This goes for denial on one side of the spectrum and hoarding a two year supply of toilet paper on the other. The virus is here. People are dead. It’s more contagious than the flu. Is it a terrible idea to have more cans of beans in your pantry until we get a grip on this? Probably not. But you don’t need to fill a shed with stuff.

5. Being hostile to fellow humans for being worried is not fair.

Without consistent, uncensored messaging from pandemic experts and scientists it’s very difficult to discern how bad this really is or will be. I’ve seen a lot of people- some that I know personally, some that I don’t- rage ranting about how we’re disgusting for not washing our hands before the virus hit or scolding us for checking multiple sources for information. We don’t have a clear, rational, national, plan, and your Facebook friends aren’t at fault for that.

6. We’re in this together.

By taking the basic precautions you’ve read about over and over again elsewhere you’re protecting vulnerable people like me just as much as you are looking out for yourself. I greatly appreciate your efforts.

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”
  • 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