For my readers, friends, and family following my health journey – here’s a health update!

Trying a New Diet

Ever since spring 2019, I’ve eaten a mostly vegan diet for ethical reasons. The only animal product I would still (rarely) consume is egg in a gluten-free bun or sauce at a restaurant.

In spite of a year of intense study before deciding to adopt a mostly vegan diet to make sure I could do it and still get an optimal amount of nutrients, and taking the many precautions I share in this post, I let others wear me down about my choice of diet.

I can’t think of a single health-conscious friend or family member who didn’t have a concern or something negative to say about vegan diets when they found out about the way I decided to eat.

About a month ago, I began to wonder if my diet could be exacerbating – or at least not helping – the autoimmune problems I’ve been dealing with since COVID.

The way diets for autoimmune disease work are by eliminating inflammatory foods and including nutrient and antioxidant-rich foods, to help heal the gut and lower inflammation. These diets almost always eliminate the biggest offenders like gluten, dairy, added sugar, and highly processed food. Beyond that, things get a bit more complex. ALL foods we consider healthy and nutritious – fruit, vegetables, eggs, fish, poultry, beef, whole grains, beans, lentils, peas, nuts, seeds, healthy fats – have a mixture of possible inflammatory and anti-inflammatory effects. You don’t know how a diet or food is going to affect you, uniquely, until you try it.

Gluten-free whole grains, beans, lentils, peas, and soy, etc. contain potentially inflammatory compounds called lectins (prolamins and agglutinins) and phytates. Research shows that old-fashioned traditional preparation methods like soaking, boiling, pressure cooking, sprouting, and fermentation (like sourdough) eliminate these inflammatory compounds, so they don’t have a harmful impact on your gut health and mineral absorption. However, in modern times people often skip these preparation methods before consuming grain and legume products, which means they can negatively impact gut health and mineral absorption.

Sometimes I was careful about traditionally preparing my gluten-free grains and legumes, but often I wasn’t. For example, I rinsed canned beans before using them in a recipe and pressure cooked or boiled rice, quinoa, lentils, and split peas. However, I didn’t soak and rinse rice, quinoa, lentils, and split peas before pressure cooking or boiling them. Sometimes I used canned beans in a fresh recipe without further cooking them. I didn’t buy sourdough gluten-free bread or sprouted flour for baking. The chickpea and brown rice varieties of pasta I bought certainly had high levels of phytates and lectins.

On the flip side, a study called the Dietary Inflammatory Index showed that a number of plant-based foods had anti-inflammatory effects on six inflammatory markers in humans. In the same study, animal products had inflammatory effects on these markers.

All this being said, I had previously concluded that because I could traditionally prepare gluten-free grains and legumes to remove their inflammatory properties, they contain so many phytonutrients, and they reduced inflammation in the Dietary Inflammatory Index study, my diet was anti-inflammatory enough.

However, some people with autoimmune diseases do better on a diet that excludes grain and legumes and includes animal products.

Even with the progress I had made with my autoimmune disease since November 2022, I wanted more. What if there was something I haven’t tried yet that could reverse my autoimmune disease and put me in remission?

Jonathan and I have been thinking about our future a lot. I graduate from college in less than a year, and we would like to grow our family through adoption as soon as my health is stable enough. I was willing to try a drastic diet change to see if there was something I hadn’t yet tried that could push my body into remission.

I’ve heard stories of many individuals with autoimmune disease who go into remission through diets like Autoimmune Paleo, where you eliminate all grains and legumes from your diet, as well as other inflammatory foods like dairy. This is to eliminate all antinutrients like lectins and phytates from your diet so they can’t continue contributing to poor gut health and inflammation.

I knew I could not try eliminating gluten-free grains and legumes without adding something else back in, or I would not get enough calories and protein. So, I added back in pastured eggs, organic poultry, wild caught (low mercury) tuna, and grassfed beef in addition to eliminating gluten-free grains and legumes.

For the first few days, too, my appetite was nonexistent and my stomach was nauseated and bloated.

This temporary discomfort resolved, but what I didn’t expect was the new diet to trigger the worst autoimmune flare up I’ve had in over a year.

I had intense burning pain in my head and neck and all over my body, nerve pain everywhere, swollen glands in my neck and underarms, histamine/MCAS reactions, severe fatigue, bad nights of sleep, temperature swings, chills, lightheadedness, fuzzy thinking, blood sugar swings, tachycardia, autonomic-mediated nausea, and severe and long-lasting adrenaline surges. 3-4 days every week these symptoms were severe enough to prevent me from doing barely anything, and I was not having any symptom-free days.

At first, I thought it could be a temporary reaction and I should wait and see if it went away. I stuck it out for nearly a month, but every week I continued to get worse. It reached the point where I had to take medical leave from college for the first half of the summer semester, because I could hardly even work and I wasn’t functioning.

A little over a week ago, I couldn’t take it anymore and went back to my normal vegan diet.

I was so baffled about what happened, but I knew the Paleo/Primal style diet was making me sicker every day, so I had to stop.

Now after having some time to study and research, I understand what may have happened:

1. I was getting around 45 grams of fiber daily on my vegan diet and that dropped to 20-25 grams after my diet change, even though I was still eating lots of high-fiber vegetables. Beneficial bacteria and yeast in the gut feed on fiber/resistant starch, so it’s possible I wasn’t getting enough to maintain the level of beneficial microbes I had in my gut before.
   
2. Diet changes have been shown to rapidly alter the microbiome composition in the gut, so with the strong connection between the gut, brain, and immune system, it’s possible this new diet altered my gut microbiome in a way that was unhelpful or even detrimental for my unique biological needs.
   
3. My carbohydrate intake accidentally dropped from about 175-185 grams a day to 100-110 grams a day when I made the switch, even though I was including starchy vegetables and cassava flour. The brain requires carbohydrates as a primary energy source, even though the rest of the body is able to burn fat for energy if it needs to. Because I have neurological Lyme, a neurological autoimmune disease, and POTS, my brain is under a lot of physical stress. It’s possible it needs more energy than the average brain to manage these neurological conditions. With the sudden drop in carbohydrates, my brain my not have been getting the amount of glucose it needed to function.
   
4. Harmful bacteria and yeast in the gut like Candida feed on simple carbohydrates and sugar, so it’s possible the drop in carbohydrates caused some of these harmful microbes to begin dying, which would release a large amount of toxins into my bloodstream at one time. This is called a die off reaction and overwhelms the detox organs of the body.
   
5. I learned that legumes contain so much beneficial fiber and resistant starch that they actually work as toxin binders in the GI tract and prevent the reabsorption of those toxins into the bloodstream. So not only may I have had a die off reaction, I also lost the detox support of legumes in my diet at the same time.
   
6. Finally, I learned that animal products (and not just dairy, red meat, and highly processed meat, which I already knew) contain compounds that can increase inflammation in the body. Even eggs, believe it or not. Some people with autoimmune diseases may be more sensitive to the inflammatory compounds in grains and legumes, while others may be more sensitive to the inflammatory properties of animal products. Everyone is different. I now know I’m in the latter group.

As horrendous as this reaction has been, I’m glad I know I’ve been eating the diet that’s best for my unique health situation all along. I’m hopeful I will regain my healing progress and the inflammation will die down gradually now that I’m back to my regular vegan diet.

Going forward, I’m going to focus on:

• Taking the effort to REALLY prepare gluten-free grains and legumes via the traditional methods, to reap the benefits of no phytates and lectins in my diet that way.
• Trying the green smoothies from Dr. Goldner’s Goodbye Lupus Protocol to see if the additional antioxidants reduce any of my autoimmune inflammation.

POTS

I finished my second five-month round of functional neurology treatment for POTS at Carolina Functional Neurology Center in October 2022.

Since then, I’ve maintained my progress quite well! Sometimes my POTS symptoms flare up for a few days or a week after getting sick, but they haven’t been turning into long term flare ups or relapses.

I go to CFNC for a maintenance appointment once a month, and at home I try to keep up with POTS-friendly exercise and rehab techniques I can do on my own as often as possible.

Lyme Disease

Ever since getting my test results and diagnosis in 2019 and taking doxycycline for one month, I’ve been following the same Buhner Protocols for Lyme, Tick Borne Relapsing Fever, and Bartonella. This herbal treatment has made such a huge difference!

I believe if it weren’t for COVID causing POTS, frequent viral infections, and a neurological autoimmune disease, I would be in remission from Lyme.

Sometimes the frequent viral infections and autoimmune flare ups put so much stress on my body that it’s hard for it to continue keeping Lyme under control. The Buhner Protocols are helping my body stay strong and resilient, though.

Autoimmune Encephalitis/PANS

I’ve been working with a functional immune specialist at Yanuck Center for Life and Health since August 2022.

After getting my positive Autoimmune Encephalitis/PANS test results in November, a lot of puzzle pieces have come together and the picture of my health situation makes a lot more sense.

The way this autoimmune disease works is my immune system makes autoantibodies that cross the blood-brain barrier and create inflammation in the basal ganglia part of my brain. The antibodies also activate receptors in the brain for the “fight or flight” neurotransmitters – adrenaline, noradrenaline, and dopamine. This means my immune system creates inflammation in my brain and actives the sympathetic division of my nervous system and “fight or flight” response.

When my autoimmune disease is flared up, this makes it extremely hard to override the autoimmune activation of my brain and get my parasympathetic nervous system, “rest and digest”, to take over.

The treatment involves two goals. 1.) Try to get my immune system to stop or at least reduce autoantibody production, and 2.) strengthen my parasympathetic nervous system, so it’s strong enough to overcome the immune activation of my brain during flare ups.

I’ve been making progress towards these goals with a combination of anti-inflammatory and parasympathetic supportive supplements and therapies like acupuncture, craniosacral massage, and techniques I can perform at home such as EFT, deep breathing, progressive relaxation, and vagal maneuvers.

In late December, for the first time ever I was able to activate my parasympathetic nervous system and override the immune activation of my brain during a flare with these home techniques and no medication.

Between this treatment and learning my autoimmune triggers so I could avoid them, my symptoms improved and flare ups reduced. From January through May, I reached the point where I was only experiencing a couple of autoimmune flare ups per month that lasted a few days each. I was able to avoid taking my rescue med for that entire five months.

Frequent Viral Infections

Even though I learned what was wrong with my immune system in August 2022, unfortunately even after 10 months of treatment, I have not seen an improvement.

I had RSV in August 2022, a bad cold in October, COVID for the 4th time in November, another bad cold followed by the flu in December, a strange virus that affected my sinuses and eyes and caused severe fatigue in January, and something else unidentifiable in February. Jonathan caught what I had in November and December as well. In late March 2023, Jonathan and I both caught a COVID-like virus, but we aren’t sure what it was. Barely 2 1/2 weeks later, we caught a bad strain of the flu. For me, this caused a double ear infection, and I had to get on an antibiotic and my left eardrum perforated, unfortunately.

I’m beginning to realize I have probably been Th2/Th17 dominant, with suppressed Th1, for a long time. Possibly since childhood, and at least since age 19 when I contracted Lyme and Bartonella.

I did some research early this year to see what has changed since COVID that’s causing so many viruses to be going around 24/7.

If you’re interested and do an internet search, you’ll find some in-depth articles on this subject. Prior to the COVID pandemic, typical viral activity meant one strain of a particular virus would take over and suppress everything else in a given region for the duration of a season. For that reason, once you got the virus that was circulating around, you probably wouldn’t get sick again. Other viruses would remain suppressed until the next viral season.

Ever since the second half of 2021, however, viruses are behaving abnormally. Instead of one virus suppressing the rest during a season, many strains of different viruses are circulating at the same time, all year round. It feels like you can’t get immunity to anything because it’s kind of true. Immunity can’t protect you when you’re being exposed to something new 24/7.

There are over 200 possible strains of the common cold – including adenoviruses and coronaviruses, RSV, multiple strain combinations of the flu, multiple strains of COVID-19, parainfluenza, human metapneumovirus, norovirus, as well as strep A circulating around. Many of these at the SAME TIME, year round. Additionally, adenoviruses can cause a version of mononucleosis, so you don’t have to contract EBV to get mono.

This is why people who used to “never” get sick are catching viruses a several times a year, and why people like me – who used to get sick 3-4 times a year, are now sick every month or more.

Only time will tell if and when viral activity will return to the normal we knew before the COVID-19 pandemic.

In the meantime, people with weaker or more reactive immune systems have to endure getting sick all the time, as well as the consequence of those infections worsening chronic conditions like autoimmune diseases.

Sleep

POTS, Autoimmune Encephalitis/PANS, and long term damage from neurological Lyme/Bartonella have each greatly impacted my sleep. Last fall, I decided to give neurofeedback a try to see if it could restore my brain’s ability to sleep appropriately. I’ve going to BrainCore Neurofeedback of Charlotte at the suggestion of my functional neurologist. They begin by doing a QEEG (brain map) to get insight into your brain activity and any corrections that need to be made. Based on your unique brain map, they then choose your neurofeedback protocol.

I started out with about 15 sessions targeting excess beta wave activity, and then I moved on to further sessions promoting alpha, theta, and delta wave activity.

Neurofeedback has helped my sleep more than anything I’ve ever tried. It’s truly an answer to prayer.

Over the course of November 2022-May 2023, I started being able to get at least 5 hours of sleep during autoimmune flare ups, and having medium to good nights of sleep the rest of the time.

Around February, I reduced the frequency of my sessions to one a month for financial reasons. My progress held until about halfway through May.

Sometimes when you experience several stressors on your body in a row, it can cause a regression in progress. For a time, you may need to have more frequent neurofeedback sessions for a time to bounce back and recover your progress.

Due to the back-to-back COVID-like virus, flu, double ear infection, round of antibiotics, and bad reaction to the diet change, my progress regressed a bit. I started having a more frequent bad nights of sleep again, including one night where I got 4 hours of sleep broken up and another where I only got 2-3.

For the time being, I’m restarting my weekly neurofeedback appointments. I’m already seeing my progress bounce back, and I’ve had a week straight of medium to good nights of sleep.

Mental Health

I’ll be honest, having such a severe reaction to a diet change I was hoping would drastically improve my health has been tough mentally and emotionally.

For the first few weeks, I felt like this meant my health was much more fragile than I realized and the progress I’d made in the last year was gone forever, maybe never to return. Would I ever have stable or resilient enough health to become a parent or have any sort of future?

I’m trying to give myself compassion for feeling that way, while also challenging my thoughts.

Although this has been a brutal and lengthy flare up, it is temporary. I understand why it happened now, and I have valuable knowledge about my body’s needs that will help me heal and stay well in the future. I can rest assured I will bounce back from this and continue making healing progress as I was before.

Living a life with chronic illness and autoimmune disease can feel rocky, unstable, and unpredictable at times. Today, I want to remind you that doesn’t mean your health knowledge and progress you’ve made so far is invalid or worthless. Though challenges and setbacks are so hard, they don’t negate your healing and better weeks.

Thoughtfully, Hannah