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?
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 Lyme, but not mine. Because I, with chronic Lyme, am fighting so much more than bacteria called Borrelia burgdorferi.
Lyme-MSIDS patients are victims of:
1. Lyme Disease and 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 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, and unhealthy coping mechanisms. Such a weak foundation of immunity easier allowed 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 altogether. 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 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, and immune disorders takes over the body. The founder of my protocol, Heiner Fruehauf, explains it as “oil seeping into flour.” If my body is a bucket of flour, acute Lyme, or any other pathogen, would be like dropping a pearl into the bucket. With simple medication or basic immune function, you take the pearl out, dust it off, and are back to normal. Gu Syndrome, (or Lyme-MSIDS), is like pouring oil into the flour and mixing it up. You’re left with dough, and the only way to get back to a bucket of flour – my life – would be to remove the oil. Good luck with that.
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, and that’s the end of it. That’s how most cases of acute Lyme, or influenza, or parasites seem to work. People assume if a patient isn’t better, that they have too many balls in their flour, that they’re having trouble removing them, or don’t have a doctor who knows how. But it’s so much more complicated than getting antibiotics (or let’s say, um, seeing the White House doctor.) We’re not even dealing with pearls anymore, we’re dealing with oil and dough.
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, according to the most widely-accepted narrative, 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.
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.
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.
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.
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