Happy Tickaversary - Year 4: Paradigm Shift

I can’t believe it’s “only” been 4 years since the “Summer of the Ticks.” It seems like a lifetime ago. In many ways it was – I am a different person, living in a different place, believing different things, feeling different emotions; my relationships are different, my goals are different, my body is different.

To say that it’s been a rough journey would be an understatement. But that’s how you reach the best destinations – through wilderness and wastelands. We get the finest vessels through firing the clay.

Anyway. I could go on for years reflecting on my Lyme pilgrimage (and I do), so for the annual Tickaversary update let’s keep it technical.

Where am I?

In the "speaking in platitudes stage," apparently; trying to keep myself afloat in hope. Making small gains, still chronically ill with a mess of an immune system. Last year I’d learned about Dr. Richard Horowitz’s 16-point MSIDS model of Lyme and chronic disease, Multiple Systemic Infectious Disease Syndrome. It explains how “chronic Lyme” is different from acute Lyme, and why a course of doxycycline cured your sister’s neighbor’s cousin’s "Lymes", but not mine. Because I, with chronic Lyme, am fighting so much more than bacteria called Borrelia burgdorferi. I, and other Lyme-MSIDS patients, are victims of:

1. Lyme Disease and any number of various co-infections 2. Immune dysfunction 3. Inflammation 4. Environmental Toxins 5. Functional medicine abnormalities/nutritional deficiencies 6. Mitochondrial dysfunction 7. Endocrine abnormalities 8. Neurodegenerative disorders 9. Neuropsychiatric disorders 10. Sleep disorders 11. Autonomic Nervous System dysfunction and POTS 12. Allergies 13. GI disorders 14. Liver dysfunction 15. Pain disorders/addiction 16. Lack of exercise/deconditioning

While all of this may stem solely from a tick bite, in many cases, such as mine, several of these factors were already brewing before the tick: a lifetime of poor dietary habits, frequent antibiotic use, pharmaceutical side effects, unrelenting stress, life changes, trauma, and unhealthy coping mechanisms. Such a weak foundation of immunity easier allows tick-borne pathogens (namely Borrelia, Bartonella, and Babesia) to take over the whole system, and basically manipulate it for their own survival. I became a mere host for parasites, just a body to live in. They only let me survive enough to feed them.

While this is an excellent model for Western medicine to adopt, I’ve given up on that medical paradigm for myself. For the last 2 years, my treatment has been exclusively with Chinese Medicine, not just for Lyme-MSIDS, but for every acute medical condition that arises: endocrine system, mental health, reproductive system, digestion, common cold, flu, allergies, COVID-19, you name it, there’s Chinese herbal treatment for it, and for me, it’s better than Pharma on so many levels.

Classical Chinese Medicine has a parallel diagnosis for MSIDS, called Gu Syndrome, which operates under the same principle: a smörgåsbord of pathogens, genetics, environment, lifestyle, and immune disorders takes over the body. The founder of my protocol, Heiner Fruehauf, explains it as “oil seeping into flour.” It's a slow infiltration of my biology by something nearly impossible to remove once it gets in there and gums up all my systems; prevention is the best medicine. Western Medicine sees disease as a foreign body inserted into my system, like pearl dropped in my bucket of flour - you just dig in there and pull it out. Acute Lyme may be like that: just take antibiotics and kill all the bad stuff. But chronic illness -- Gu Syndrome, MSIDS, cancer -- this is oil in my flour. You can't pull it out without taking half my body with it. It takes a solution, a chemical -- or alchemical, if you will -- reaction of separating and untangling at a molecular level. Western medicine may take the time and care to do this, if you're lucky enough to find a doctor with a functional, holistic approach, using dozens of prescription drugs, IV treatments, machines, and technology, and you're likely to end up with liver damage or failing kidneys. Chinese Medicine focuses on using the body itself, in relationship with nature, food, seasons, gravity, blood flow, biological processes, and energy management, in a continued balance and harmony of detoxification, repair, and restoration. Western medicine may require half a dozen specialists to treat each of your MSIDS points; Chinese Medicine requires one, in cooperation with your own responsibility and lifestyle choices.

Here is the thing most people don’t understand about chronic Lyme. We are taught that Lyme, or any other illness, is a pearl. It gets dropped in, you dig it out with medicine or surgery, and that’s the end of it. People assume if a patient isn’t better, that they have too many pearls in their flour, that they’re having trouble removing them, or don’t have a doctor who knows how. They keep telling me to see this doctor, do that treatment, "why can't you just...?" But it’s so much more complicated than just getting the right diagnosis and medication. We’re not even dealing with pearls anymore, we’re dealing with oil -- dough; sticky, complicated, complex, like a tumor wrapped around your most precious and delicate veins and nerves. One false move -- one missed contraindication, one allergic reaction, one unexpected side-effect, one mineral or neurotransmitter imbalance -- and our life is on the line.

When I say that I feel good, that I’ve removed most of the pearls, when I look like a regular old bucket of flour again, people assume that I’m better. That I don’t have Lyme anymore. But it’s just not true. We will never know if the actual Borrelia burgdorferi is completely eradicated, and even if it is, the oil – the parasites, mitochondrial dysfunction, immuno-compromise, degeneration, etc. – is still in there. The sticky mess of dough is still clumping at the bottom and sides of the bucket. Year after year there is less of it, and more fine fluffy flour, but it takes a long time, possibly a lifetime, to remove all that oil and stop it from getting in there again.

I have the right diagnosis; I'm on the right treatment. But it only works because I stay the course; I continue to foster the conditions that separate the oil from my flour and prevent more disease. "Aren't you better yet?" people exclaim. "You're still sick!?!" Yes. But I don't look like it because I manage it really well, I set my boundaries around my environment and input, and when I'm having a flare, I don't show up. If you're seeing me, it's because I did my work, and behind the scenes, just surviving is my full-time job.

The frustrating part is that Western medicine doesn’t have a term for this. The CDC still won’t accept that tick-borne pathogen persistence is real, and refuse to name it.* There’s no widely-accepted diagnosis like MSIDS, there’s no definitive line where a patient crosses over from having active Lyme (borreliosis) to a post-treatment syndrome (PTLDS), as tests are poor indicators. I have no official diagnosis, so it’s really hard to talk about to anyone who hasn’t gone through it or studied functional medicine. I can try spouting off several of my acute diagnoses, with various points of the MSIDS model, like parasites, candida, a weak immune system, ADD, PTSD, or even mast cell activation disorder, which no one has heard of anyway. But it only seems to them that these are other “pearls” in my flour that some medicine can fix. And it’s just not the case.

That does NOT mean that my oil-removal method is a failure. It doesn’t mean that I am still looking for the miracle cure, or I need a new doctor, or I haven’t figured it out. I am settled on my protocol. My doctors are geniuses, as far as I’m concerned. I love my plan. It is working. It just takes a really really really long time. Like taking oil out of flour. And I have no crystal ball that will tell me how long it will take, or if I’ll ever be completely successful. My future is a blank.

*(update: thank gooooooood, things are changing. "Long-COVID" really pushed the research on this to the forefront, and the various theories of ME/CFS, MCAS, EDS, Long COVID, PANS/PANDAS, fibromyalgia, and even autoimmunity are starting to converge into a more coherent "immune system dysfuntion modulated by inflammation, stress, and pathogens" paradigm which is finally gaining some traction... but far, far too slowly for the average patient to be helped by their uninformed doctor. And insurance coverage is a pipe dream.)

What does this mean in simple terms?

Over the last year, my treatment has allowed incredible improvements:

1. First and foremost, the most exciting news of the year is that I have successfully eliminated ALL PHARMACEUTICAL DRUGS. My seasonal allergies, menstrual cycle, thyroid, depression, and infections are all under control without pharmaceutical antihistamines, hormones, T3/T4, antidepressants, or antibiotics. This is the first time in 20 years I haven’t had an rx to fill, all of which I was told I’d be on for life. This in itself makes the last 4 years worth the pain for me.

2. Sleep, glorious sleep. All-nighters and insomnia are rare now.

3. Less food sensitivity. I’m able to eat a wider variety with less reactions, though I still choose to eat freakishly well and fresh because I believe you are what you eat, and I want to be whole, natural, and vibrant. (See: Whole30, Will Cole, Terry Wahls, Paul Pitchford)

4. Less panic and anxiety attacks, less herbs needed to control them, faster coping mechanisms. Working on my mental health through retraining the brain, processing PTSD, and learning healthy thought patterns has been HUGE! (See: Caroline Leaf, Annie Hopper, Nicole LePera, Lissa Rankin)

5. Much fewer headaches!

6. Milder flares. This week is also an anniversary of severe Babesia attacks, which recur every few months. I’ve felt not-great, but the symptoms are so mild it hasn’t caused panic. This is important because Babesia causes shortness of breath, which is terrifying in itself, but paired with the COVID-19 pandemic would kill me, with either fear or lack of oxygen.

7. I finally got my insurance company to pay up.

8. Returning creativity, ability to finish small projects in art and writing.

9. I learned an immense amount of information about stress, controlling thoughts and habits, processing trauma, nutrition, Chinese medicine, faith, marriage, and how to survive pandemics.

Why am I not better yet?

1. Borrelia, Bartonella, and Babesia (my 3 known infections) as well as candida, parasites, and viruses, all have persister forms, using sneaky mechanisms to hide and evade treatment and the immune system. Think of them as pearls that can melt into oil and mix up my flour. The good news is, my doctors believe I have much less, if any, left of the tick-borne diseases. My treatment has shifted from major pathogen attack to rebuilding the body to fight for itself.

2. Damage. My joints, nerves, immune cells, neurons, GI tract, urinary tract, liver, kidney, spleen, heart, and lungs have all taken a severe hit. They’re all dead, damaged, or struggling to survive. It’s going to take a lot of TLC to rebuild. I am hoping the local pool will open amidst COVID-19, or at least an aquatic therapy center so I can start PT - exercise still causes a lot of pain (yes, even yoga).

3. PTSD. Chronic illness is traumatic. COVID-19 was a shocking trigger. There’s no single therapy or revelation that can suddenly heal trauma and lock the triggers. I will be relearning habitual responses and coping mechanisms for the rest of my life. They will get easier and automatic, but it takes time. The above-mentioned resources all have long-term programs I'm hoping to continue practicing.

4. Food and chemical sensitivities. A mix of numbers 2 & 3 above.

5. Fatigue and brain fog (cognitive impairment). Any combination of the above can cause this. I still can’t multi-task well, be in crowded fast-paced situations, or speak clearly. Sensory overload. I'm working on time management and stress reduction, but mostly this will only improve with extended treatment. Spoon theory is a useful metaphor, helping me understand where I use energy physically, mentally, and socially.

Year 5 starts today, amidst COVID-19, elections, economic and social upheaval, a week of April showers, and the brink of tick season. But thanks to Lyme, I’ve learned what really matters, and none of this scares me.*

“Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9

*she said naively right before 2020 triggered her into an existential crisis... spoiler alert: her nervous system grew, she learned a lot, and made it through smarter, stronger, and more resilient ;-) It was very ugly.

some resources:

Tick Boot Camp - lots of resources and podcast about hundreds of methods for healing

Primal Trust - a Lyme-inspired program of managing your nervous system to optimize your immune system

Classical Pearls - find a practitioner of Classical Chinese Medicine / Gu Syndrome