In June I published a post, You Aren’t a Failure if Your Chronic Illness Scares You, sharing some new health complications I was dealing with.
I have more answers now about what’s going on, as well as a report on some health progress and regression in different aspects, so I wanted to share an update for those of you who are following my health journey.
If you remember what I shared in my last health update and don’t want a refresher, you can click here to skip to the section where I share what’s wrong with my immune system.
In September 2021 another post-Covid complication revealed itself. I started catching every virus I was exposed to with no apparent reason why, which led to me getting sick all of the time.
1-2 times per month, I would come down with some version of a cold, the flu, Mono, COVID, or strep. Each time, whatever it was would wipe me out for 1-2 weeks, which meant I was quite sick for half or more of every month.
September through January, I attributed this to an especially bad cold and flu season. In February 2022, I decided to isolate at home for the rest of the cold and flu season to give my immune system a break, so I didn’t attend church or socialize in groups of people for a couple of months.
In April, when I returned to church and my normal social activities, I got sick with the flu. Then, in May, I caught a strange virus with symptoms that resembled Mono (severe fatigue, body aches, swollen glands, scratchy throat, low grade fever). Finally, in June, I caught COVID for the third time.
By then, I began to feel worried and desperate. Cold and flu season had ended, and I could not stop getting sick no matter what I tried.
In May, the recurring viral infections had taken their toll on my body, and I lost a lot of the healing progress I had made on my chronic illnesses over the past several years.
This wasn’t surprising, though it was frightening, because you can’t “cure” chronic illness. Even after months or years of improvement, stability, and even remission, you can still relapse if your body undergoes extreme physical or psychological stress.
In the midst of contracting the Mono-like virus in May, going through my third bout of COVID in June, and experiencing the beginnings of a POTS and Lyme Disease relapse, I had to take medical leave from college for two months and pause my work on this blog. I didn’t have any energy or stamina, and what little I could muster I needed to put toward my day job, which – praise God – I didn’t lose because it’s 99% remote work.
I made the difficult decision to isolate at home indefinitely, until I could figure out what was wrong with my immune system and fix it.
If I kept getting sick, I knew my situation would only get worse. So I withdrew from my church volunteer roles as worship team vocalist and co-leader of the Young Adults Group, and I started watching church online. For the entire summer and most of the fall, I only socialized with family and friends one on one or in very small groups if I could confirm no one had been sick or exposed to anything viral.
So – what’s wrong with my immune system?
This is the million dollar question my family and friends, and possibly you, want to know.
My primary care doctor, an MD also board certified in functional medicine, ran two rounds of lab tests in an attempt to uncover the problem. If you’re interested in learning more about her, her name is Dr. Nancy Palermo and she works at Thrive Center for Personalized Healthcare and Wellness. The tests Dr. Palermo ran included the following:
- Vitamin D
- Iron
- Vitamin A
- Several other nutrients
- IgG antibodies, total
- IgA antibodies, total
- CBC with differentials
- Epstein Barr virus antibodies
- Cytomegalovirus antibodies
- HHV-6 antibodies
Each of the above tests came back with normal results. I had IgG antibodies to HHV-6, but the amount wasn’t high enough to suggest a reactivation problem.
My CD-57 (a natural killer cell involved in fighting the bacteria that causes Lyme Disease) level was extremely low at 21 /uL. This didn’t help us figure out what was wrong with my immune system, but it did hint that I was truly experiencing a Lyme Disease relapse.
Dr. Palermo did an incredible job taking my situation seriously and attempting to uncover the problem. In the end, though, my case was out of a primary care doctor’s scope of practice. Towards the latter half of June, she recommending seeing an immunologist for further testing.
In early August, I had my first visit with Dr. Yanuck from The Yanuck Center for Life and Health. I can’t recommend him enough.
During that 90-minute visit, he explained exactly what he believed was going wrong with my immune system, in elaborate detail. As a science major, I really appreciated the time he took to show me his theory without dumbing it down.
I didn’t have to say a word about my health situation during the visit, because he studied my health history and lab work so thoroughly before the appointment.
He ran an extensive panel of lab work to check his theory (seriously, I have never had so many tubes taken in one draw before). My results indicated that his theory was right, so at the follow up appointment he discussed a treatment plan with me.
The reason my immune system is so fragile right now is that I have a T helper cell imbalance.
T helper cells are abbreviated “Th”, for reference.
More specifically, I’m Th2/Th17 co-dominant, and I have suppressed Th1.
T helper cells are a part of the immune system that assist the body in producing cytokines and antibodies.
This is a very simplified explanation since I don’t want to write a dissertation on the immune system here, but – Th1 cells help the body fight recent infections and viruses.
Th2 cells, on the other hand, help the body fight older infections and bacteria. They can also trigger the development of allergies.
Th17 cells, unlike Th2 and Th1, don’t help the body fight infection. In contrast, they can lead to the expression of autoimmune disease.
Ideally, you want Th2, Th1, and Th17 cells in balance with one another, so the immune system can fight whatever it needs whenever it needs, and so allergies and autoimmune diseases don’t develop.
Because my Th2 and Th17 cells are out of balance with Th1, my body isn’t making enough of the cytokines it needs to produce adequate IgM antibodies and fight viral infections.
I have been on a treatment plan to increase the expression of my Th1 cells since September. Resolving my T helper cell imbalance is possible, but it’s unlikely to be quick or linear.
Sparingly and cautiously, I’ve started to attend the occasional church service and event in person again. My immune system seems to growing more resilient, but I have caught one upper respiratory virus as well as my fourth case of COVID in the past several months, so I don’t want to throw caution to the wind.
How is my POTS relapse responding to treatment?
Out of everything, my POTS relapse responded the most quickly to treatment, and it’s the area where I have made significant and lasting improvement.
When the relapse began in May, my orthostatic symptoms increased dramatically, so I had tachycardia, lightheadedness, dizziness, and shortness of breath every time I had to sit or stand up. As you might imagine, that was most of the time.
I went to Carolina Functional Neurology Center for POTS treatment initially, in September 2021. After five months of neurological rehabilitation from October-February, my orthostatic symptoms and quality of life were much better. My heart rate would stay in the 90s to low 100s when standing and didn’t go above the 110s when walking slowly-moderately. I didn’t have lightheadedness, dizziness, or shortness of breath when sitting, standing, or walking anymore. Not only that, I was able to start a physical therapy routine of supine and seated strength conditioning and gentle walking every day.
Because I had such phenomenal results before, I went back to Carolina Functional Neurology Center to treat my POTS relapse. It took five more months of neurological rehabilitation from June-October, but I regained ALL of my progress.
POTS doesn’t really go away, but mine is back under control. I expect to keep my progress, so long as I can avoid getting sick too frequently, keep up with my physical therapy routine, and not overdo it with any intense physical activity like lifting, dancing, running, or hiking.
The only POTS symptom I’m still dealing with is adrenaline surges.
This is a phenomenon where, due to a glitch in the autonomic nervous system, the body releases a surge of adrenaline for no reason and you feel like you’re having a panic attack, except without a fear trigger. Mine come in waves, often at night, and last anywhere from hours to days. Sometimes I’ll go weeks without any. Other times I have multiple episodes in a week. Sometimes I can get them to stop if I do vagal maneuvers, lie down for a couple of hours, and put my feet up. Other times I have to take medication to suppress my central nervous system.
How is my Lyme relapse responding to treatment?
Treatment of a late stage Lyme Disease and coinfections case is very different from an early stage case.
If you catch your Lyme Disease infection early and treat with antibiotics right away, you have an 80% chance of experiencing full recovery and never having to worry about Lyme Disease again.
When you don’t catch Lyme Disease and coinfections early, over time they cause widespread and severe inflammation, nutrient depletion, immune system dysfunction, damage to the nervous system, connective tissues, heart, liver, and gut; neurotoxicity, and an overload on the body’s detox organs. Sometimes, they even trigger the development of autoimmune disease.
Because the bacteria form biofilms and morph into their dormant cyst form after they bore into the tissues of the body, they can very skillfully avoid pharmaceutical and herbal antibiotics. For this reason, it is impossible to completely eradicate the bacteria in a late stage Lyme Disease and coinfection case.
My Lyme Disease and Bartonella coinfection went undiagnosed and untreated for 4 1/2 years, so I didn’t get a treatment outcome like someone who caught and treated their infection early.
When treating late stage/chronic Lyme Disease, the treatment goal is to reduce the bacterial load as much as possible, modulate the immune system, downregulate inflammatory cytokines, restore nutrient levels, repair any organ damage if possible, restore function to the body’s detox organs, and bind and flush endotoxins out of the body.
What all of this means is that even when a person with late stage Lyme Disease and coinfections makes a lot of healing progress or even reaches remission, they can relapse.
If their body experiences more physiological or psychological stress than it can handle, the immune system loses its ability to keep the bacterial load low enough for symptoms to remain at a minimum, and the Lyme Disease and coinfections take over their body again.
I have been back on the highest doses of my treatment for Lyme Disease and coinfections for five-six months, but I’m not recovering quickly or linearly.
It took me six months to recover enough to even work part-time again when I began Lyme treatment for the first time in November 2019. I’m not that sick right now, thankfully, but I’m also nowhere near as well as I was in March 2022, before relapsing.
I have occasional lulls, but frequent flare ups of pretty severe fatigue, nerve pain, inflammatory pain in my head, neck, and body; temperature regulation problems, brain fog, and short term memory problems.
Only time will tell if I just need to wait it out, or if I will have to add anything to my treatment plan.
How is my progress with sleep?
Both POTS and Lyme Disease have had major effects on my ability to sleep.
Adrenaline surges from POTS aren’t constant, but when they happen, they make it nearly impossible to sleep because adrenaline and norepinephrine are stimulating neurotransmitters.
My late stage Lyme Disease and Bartonella coinfection caused neurological damage that permanently affected my sleep patterns. When I’m sick, flared up, stressed, or emotional, if I had sugar or chocolate in the evening, if I’m exposed to blue light, or if I get my heart rate up in the evening or night – I sleep terribly.
Even on “good” nights, I take longer than most people to fall asleep and wake up several times in the night. Randomly, I’ll have poor quality sleep or can’t fall back asleep after waking up too early.
Cortisol regulation is a factor, too. Because of chronic stress, I’m prone to my cortisol level being too high in the evening and night for me to fall asleep.
Because my insomnia is a multifaceted issue, I’m treating it with a multifaceted approach.
To prevent and control adrenaline surges and elevated cortisol, I take holy basil, phosphatidylserine, liposomal GABA, and a blend of herbal sedatives in the evening and night. I’m also getting acupuncture treatments once a month and craniosacral massage bi-weekly to help my body more easily shift into parasympathetic (“rest and digest”) mode instead of being stuck in “fight or flight” so often. At home, I try to incorporate somatic techniques, vagal maneuvers, and adequate rest, so my body can relearn how to reach a state of calm and deep rest.
To address the neurological damage component, I had an EEG to measure my brain activity and began a neurofeedback treatment plan to restore my brain’s ability to reach theta and delta waves.
Occasionally, I have to take medication to suppress my central nervous system so I can rest and sleep, but my goal is to reach a point where I don’t need to do this anymore.
All of these modalities together are helping, but I still have a lot of work to do.
A Possible Autoimmune Diagnosis
My last update is short, because I don’t have much information yet.
Dr. Yanuck, my immune specialist, believes I may have an autoimmune disease – autoimmune encephalopathy or basal ganglia encephalitis – caused by neurological damage from COVID and my late stage Lyme Disease and Bartonella coinfection.
I’ll get the test results in 2-3 weeks.
If I test positive, that might help explain some of the lasting symptoms I’m struggling to resolve.
*Update: My results came back. I tested positive for antibodies that elevate Cal/Calmodulin Protein Kinase II in the brain. This causes upregulation of (ie. excessive) dopamine, adrenaline, and norepinephrine in the brain and body.
Some symptoms of autoimmune encephalitis include memory problems, balance issues, insomnia, sleep disturbances, weakness or numbness, neuropathy, nerve pain, and severe anxiety or panic attacks. I have a visit with Dr. Yanuck Tuesday, December 6 to discuss my results and talk about how I can treat this going forward.
For those of you who might be going through something similar, I’ll share how I have been funding my doctor’s visits, testing, and therapies.
I have a Christian health sharing plan called Samaritan’s Classic. It costs $177 per month.
It doesn’t cover anything routine or pre-existing, but when you have a new medical problem or complication of something pre-existing caused by a new medical problem, you can submit a claim.
Once your claim is approved, you submit your invoices for every doctor’s visit, medical test, and therapy visit as you complete them. You can’t submit anything you’ve paid for until after you have completed the visit, test, or service. Each new set of submitted invoices takes two months to process, and then Samaritan’s reimburses you for the services.
Samaritan’s places a limit of 40 therapy visits per claim (including chiropractic, massage, acupuncture, physical therapy, and rehabilitation combined), but they cover unlimited doctor’s visits and medical testing.
Since I don’t have cash to pay for my doctor visits, testing, and treatment up front, I have been using medical credit cards (Care Credit and Advance Care) to front payment before Samaritan’s reimburses me.
Sometimes life gives you lemons, and you can’t make lemonade.
If I were to claim that my chronic illness has only made my life better, I would be doing a disservice to my family, friends, and readers who also struggle with chronic illness and autoimmune disease.
The impact chronic illness can have on your life is very real, and often horrible. My heart goes out to everyone who is going through an overwhelming time with their health right now.
Truthfully, my current health situation has made it difficult for me to make headway towards my college degree, make the advancements I’d like to on this blog, and keep up with my workload.
It’s also prevented me from being able to volunteer, socialize, and spend time with the people I care about.
Combined with my husband’s health situation (which is his story to share), we have no idea if or when we will be able to move forward with adopting a child like we so greatly wish we could. Both of us have always wanted to be parents, so to imagine a future where we could be childless forever breaks our hearts.
Some days the pain and overwhelm are too much to bear. Other days I can find joy in the little things, as well as hope in the progress I have made and the potential for continued improvement. On those days, friends, I’ll always make an effort to share that glimmer of hope with you. A little bit of hope goes a long way.
Sincerely,
Hannah Mayhorn
