I've been octopusing the depths for 3 years now, and elsewhere you can find the glorious communion that makes it all worth it. For today, it is time for the annual Tickaversary State-of-the-Spirochete Address.
To summarize, on April 24, 2016, I woke up with a tick crawling on me while vacationing in the hills of Pennsylvania. One month later the typical symptoms of Lyme disease overwhelmed me, but because of overlapping health issues, I did not recognize them and treatment was delayed for 5 months. I have Borrelia, Bartonella, and Babesia infections. You can read my previous update here.
New Diagnosis
First of all, it’s time to shift the terminology. “Lyme Disease,” with its sensu stricto semantics and political connotations is no longer a term I am comfortable with. I use it for convenience – it is literally exhausting to explain the chronic tick-borne illness debacle to an outsider, and all the nuances are universally understood among insiders. However, the expression is deficient, and I believe contributes to the lack of understanding and discord among patients and professionals. I am convinced we need a better term to encompass the tangle of infections, immune dysfunction, genetic variations, and widespread damage that create chronic illness in tick-infected patients. After reading his literature and ultimately attending a seminar by one of the top brains in the field, Dr. Richard Horowitz, MD, I’m partial to the Lyme-MSIDS model.
MSIDS stands for Multiple Systemic Infectious Disease Syndrome, and describes 16 overlapping factors that contribute to chronic illness:
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. ANS dysfunction and POTS
12. Allergies
13. GI disorders
14. Liver dysfunction
15. Pain disorders/addiction
16. Lack of exercise/deconditioning
Lyme-MSIDS obviously deals with tick-borne infections, while non-Lyme MSIDS would refer to other chronic illnesses – fibromyalgia, CFS/ME, PANS/PANDAS, etc. – which may have other infections at the root. Horowitz’s book and latest published research can be found here.
The above 16 factors are why I am still sick. They are how your neighbor “got over his Lymes” with three weeks of antibiotics (suffering from only #1) but I am still unemployed, even though I “look good” (suffering from about 13 of these).
New Treatment
In the last year, allopathic prescriptions (about a dozen antibiotics, anxiety, sleep, and histamine meds) caused me severe gastrointestinal distress, mental instability, and increased food and chemical sensitivities, so I turned to acupuncture and Classical Chinese Medicine. I love Heiner Fruehauf’s description of Gu Syndrome and the visual language is very validating to me. I am off all prescription antibiotics, and treating infections exclusively with Chinese herbs. This has given me remarkable, if volatile, progress.
The problem on this Tickaversary is, I started writing my update weeks ago, and since then have had a major flare-up that turned everything around. That is the very nature of MSIDS. Good days and bad days, remitting, relapsing, herxing, and healing. So the general update is the same, but at the moment I’m really struggling with all the debilitating symptoms I had at the very beginning.
From a Chinese medicine standpoint, I have been told I am in the latter half of the pathogen-fighting stage, after which comes immune system recovery. As you can see from the 16 MSIDS points above, eradicating infections is only one issue that needs to be solved to reach remission.
Recovery, though it sounds like I’m out of the woods and things are getting better, continues to be a struggle. Once you stop fighting for your life to survive pathogens, you have to fight for a life to get on with living. With chronic Lyme-MSIDS, you can’t just pick up where you left off before you got bitten. Your entire world is a burnt heap of rubble, and you have to figure out how to rebuild it, with a new body (likely physically weaker and more sensitive than the old one), a new mindset, a new scope of knowledge, and you will have to find new goals and a new reason for living. You’ve already spent the cost of a college degree on treatment, so if that was your plan before, it’s probably gone now. You have to rebuild friendships that went cold, or find new relationships to replace the people who left you. All with PTSD and severe anxiety from being so abandoned, so gaslighted, so disappointed, so hopeless, so sick.
I have to re-thicken my skin against the comments that hurt the invisibly-ill the most: “But you don’t look sick,” and “I thought you were better.” I used to be able to say, “I am sick,” or “Have you seen this nightmare of microscopy pulled from my veins?!”
Now… there are 16 complicated points behind the answer to “Hey, how are you?” and I can’t afford the test results to prove anything.
Besides harboring persistent and dormant forms of bacteria and protozoa, my body is very broken, very weak, even down to a cellular level. You may see me doing pitifully easy tasks, smiling and laughing and “looking good.” But you don’t see the pain that seizes up my spine 20 minutes later or the vice grip clenching my head with an “exertion headache” just from holding too long a conversation. I am all too happy to share my progress, because knowing I’m actually making some is what keeps me from giving up. Also, people start to make insensitive comments or squirm uncomfortably when I'm honest about my latest symptoms, so usually it's just easier to show the bright side.
But you don’t see the hours I have to spend on the couch resting after I get a shower, and again after I go to the store, and again after I cook my lunch, and again after I do the dishes. I celebrate that I can do those things, but it takes a lot of work and time management that most people take for granted. I am as stressed and worn out by the tasks of daily life as I was working a full-time job. So I may utter a “fine” or “okay” or “a little better” when asked how I’m doing, but every day is a struggle.
This doesn’t look or feel like “recovery”. People think of recovery as tomorrow being better than yesterday, every day, every week, a little stronger. But Lyme-MSIDS recovery, like the throes of the disease itself, is a roller coaster. All gain requires pain. Too much gain and you’re back in bed for a week. The patience I had to learn in slowing down and stopping life for 3 years is the same patience I have to learn again in restarting life, at a snail’s pace.
It is a constant sway between stages of grief. In the beginning, you grieve the loss of life as you know it. As you work toward remission, you are given an inch of energy and eagerly take a mile. That causes a crash and burn, then you feel like a failure, and you grieve your losses all over again. So as this wearisome cycle continues month after month, it wears you down. In some ways, the stress, loneliness, and difficulty make it feel like life is getting worse. Meanwhile your body is getting better, and you tell everyone things are going well. There is extreme dissonance between the outside and inside, the mind and the brain, the heart and the soul, the reality and the faith. It is impossible to understand unless you’ve been there, and each attempt adds a brick to the wall of isolation and confusion.
Like everything else about Lyme-MSIDS, this is anathema to our society: people who aren’t making lemonade with their lemons, YOLOing the heck out of every challenge, FOMOing their way through a busy social calendar, razor-focusing on their goals, and positive-thinking their way to the top. Esmé Weijun Wang explains this struggle very well in an article for Elle. “My deep fear is that I'm secretly slothful and am using chronic illness to disguise the sick rot of laziness within myself.”
Going against the grain of society, and of science, and of moral conscience naturally causes mental anguish and stress, which are the very poisons preventing us from healing. The healing journey battles against itself. This is maddening. Once we get over the physical illness, the mental trauma lurks just behind.
“Don’t give up” is the message of the day.
It sounds horribly trite, but you will forget your little victories and you will be bulldozed if you don’t remember to keep going purposefully.
What are my little victories?
1. Insomnia. Oh. Em. Gee. I am sleeping again! Sleep is crucial for healing, and I must remember continually how much progress I have made in this area. Insomnia is now rare.
2. Anxiety. I found a magic concoction of Chinese herbs that, along with acupuncture and cognitive therapy, has greatly lowered my panic attacks and anxiety. “Switch On Your Brain” by Caroline Leaf has been an amazing tool!
3. Sjögren’s symptoms. My body, and eyes in particular, is no longer threatening to shrivel up and blow away as dust in the wind.
4. Personality. Though energy does not always allow, I feel my old creative spark coming back more often, and I feel more like my brain is my own again (most of the time).
So what’s left? Why am I still not a functioning member of society?
1. Food sensitivities. I can’t eat anything I haven’t made for myself or carefully inspected the full honest list of ingredients. This makes it hard to travel, impossible to have a social life.
2. Brain fog. After a few hours of physical or mental activity, my brain shuts down like an overheated computer. It just won’t think anymore. I am easily overwhelmed, overstimulated, and unable to focus. 3. Fatigue. I have to rest after everything.
4. Headaches. Whether from exertion or tension, I pretty much have a headache all the time.
5. Neuropsychiatric instability. I’m working on getting off all pharmaceuticals so the synthetic chemicals are not interfering with anything. This is very difficult – I’m particularly sensitive to withdrawal.
6. Pain. I am out of shape. It hurts to work. Last time I packed a suitcase, my spine was in so much pain I didn’t sleep for 3 days and kind of wanted to die. I’m seeing a chiropractor and physical therapist to help, but progress is slow.
7. PTSD. This journey has changed everything – my body, my mind, my knowledge, my worldview, my goals, my faith, my trust (or lack thereof), my entire life. I have no idea how to live a “normal” life anymore, even if all the above issues were magically solved. MSIDS is incredibly isolating.
8. Flare-ups. I'm in the middle of a real doozy of a Babesia flare right now, with air hunger, light-headedness, insomnia, heart palpitations, panic attacks, and writing my last will and testament. Each one is slightly milder and shorter than the last, but they’re still terrifying, and still a depressing reminder that the battle is not yet won.
What’s next?
My insurance stopped cooperating with my physician, so we’re back to out-of-pocket budgeting the treatment. Chinese medicine can do a lot, but it’s incredibly slow, and further testing could pinpoint more aggressive treatment.
First, I would like to get a comprehensive gut analysis (GI Map) to determine what parasites, nutritional deficiencies, and bacterial overload might be at play in there. I must heal my gut to solve food sensitivities, ensure proper nutritional intake, and keep the detox moving. Second, I’d like to test for heavy metal accumulation, as this is often a factor in many of my remaining symptoms, especially the brain fog and mental instability.
I could easily drop $1500 on the consults and tests for those, in addition to paying as much for routine treatment every month, so while these are obvious boxes to check on the MSIDS list, I have a lot of studying and consideration to do in order to get the most reliable bang for my buck. We are working on a new negotiation with insurance, so I’m waiting to see how that works out, but I’m not relying on it.
Further probes could be made into mold and psychiatric counseling, but those are even more expensive and have variable efficacy. They will have to wait. Hoping the return of summer sunshine will get me out, grounded, active, and rebuilding.
I’m actually at the same point I was a year ago – at a dead end, just waiting and praying for my options to unfold. I really don’t know what to do right now. That worked out really well last time, so I must have faith that it will work out perfectly again.
ONE MORE WEEK until Lyme Awareness Month! I plan on sharing more posts and research during that time.
Here’s to the year to come, hoping the octopus will learn to float.