The Lyme Spiral

The Lyme Spiral

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Two of the most commonly asked questions I face as someone with Lyme disease is “when were you bitten by a tick?” and “when did you get Lyme?” To be honest, while I have my suspicions, I really have no idea. Many people are surprised to hear that the majority of people with Lyme disease never recall being bitten by a tick. The bullseye type rash that people assume is the hallmark of Lyme symptoms also doesn’t occur in many of us with Lyme, hence why we have no idea when we first contracted the disease.

Early History

I was an active child and a competitive swimmer. By high school, I was swimming at the state and national level. I was in great shape with great health, or so I thought, and had no obvious reason to be experiencing any medical abnormalities. However, over my freshman year in high school, I started experiencing widespread joint pain. Because I was in such good health and swimming and training up to four hours per day, it came as a surprise to my parents, coaches, and doctors when I was experiencing such pain. During this time, I did get tested for Lyme by my pediatrician. While he was fine testing for rheumatoid arthritis and lupus, we had to beg him to test for a Lyme test, even though it was common in our area. It was years later when we learned that traditional doctors typically do not test for or treat Lyme disease.

My test showed that I had one positive band of Lyme. He said that this was not enough for a diagnosis, and I was sent home without any answers. My sophomore year of high school, the joint pain continued and even began to get a bit worse. I went to a rheumatologist at the Children’s Hospital of Philadelphia and was diagnosed with Amplified Musculoskeletal Pain Syndrome, also known as AMPS. Their main treatment plan was exercise, which, with swimming, I was already doing. There wasn’t much else that could be done, but by junior year it seemed like I had grown out of AMPS. Whether it was really AMPS or had it been Lyme disease all along, I have no idea.

College Dorm Flu Masked My Infections – Until My Vocal Cords Went Haywire

My freshman year of college living in a dorm I was sick constantly. I missed several of my college swim meets from contracting the adenovirus, developing severe swimmer’s ear, and coming down with strep throat and bronchitis. Another strange thing I began to notice was that I was having low grade fevers nearly every day. I got tested for the mono virus, as many college students are, at one point or another, but the test came back negative. With the constant infections, along with many headaches and slight fatigue, a blood test showed that I had an underlying Epstein Barr virus from prior contraction. I do think they missed mono, and I can’t help but wonder if Lyme played a role.

During my sophomore year of college, I began the swimming season feeling strong until I developed a nasty virus along with a bad cough within the first few weeks of the semester. Luckily, the virus died down, however the cough never went away. The cough became worse as I swam and I was led to assume I had developed sports-induced asthma. I just couldn’t get in a good full breath. During fall break, I went to an allergy and asthma specialist. When I told her I couldn’t fully breathe in, she pointed out that with asthma, you typically have trouble breathing out. She performed a rhinoscopy, where they stick a camera in your nose down into your throat, and examined my vocal cords on a very fuzzy screen before diagnosing me with vocal cord dysfunction. This was a difficult diagnosis because it was hard to explain to friends and family. It is not commonly known, and somewhat misunderstood. People genuinely had no idea that when I was breathing in, my vocal cords were spasming closed. The only thing I could link this to was the virus I had a month prior.

It took months of my vocal cord dysfunction being taken lightly or just blatantly disbelieved until I went to an otolaryngology specialist in New York City. The specialist performed a rhinoscopy as well, but recorded everything on a crystal clear screen. He was able to visibly show my parents that my vocal cords were, in fact, spasming closed when I breathed in. My parents have since admitted they didn’t fully believe me until that appointment. The recommended treatment was Botox. This meant that I had to go into the city every few months to get Botox injected into my vocal cords. Eventually, the doctor recommended surgery because folds of tissue were leaning into my airway over my vocal cords, a condition known as laryngomalacia, making my vocal cord dysfunction worse. I got surgery and continued with my Botox appointments and my vocal cord dysfunction finally calmed down a bit. Again, here I had suspicions that this was related to Lyme disease as well. My first Lyme specialist commented that vocal cord dysfunction could have been a result of the disease. After hearing Shania Twain’s story about how Lyme disease affected her vocal cords, my suspicions were stronger, but, again, I will never know for sure.

Looking For a Zebra: Fatigue, Tachycardia, and Hypertension

I took a year off of school for a few different reasons, some of them being medical. I was still experiencing low grade fevers constantly, fatigue, tachycardia, and hypertension. I was still very active, going to OrangeTheory Fitness classes a few times a week, along with lifting weights and swimming. Currently, I can barely walk my dog and my exercise consists of physical therapy. A few times, I went to OrangeTheory Fitness with my mom, and when I looked up at my name on the screen, I saw the number 212, which I thought was my score (I thought I was winning), but my mom realized it was actually my heart rate. At another point during this year, my blood pressure was in the 200s over the 200s. I went to an endocrinologist for my fevers, fatigue, and the general feeling that something was very off. She told me I was on so many psychiatric medications that they were making me “sound slow,” and that I just had fever of unknown origin. She also said that she was going to visit her family in India and could bring me back herbal supplements for the fever of unknown origin.

That being said, I did have severe anxiety at the time and was dealing with post-traumatic stress disorder. I had no idea what this meant at the time, but my psychiatrist told me to go to my primary care doctor and tell him “we’re looking for a zebra,” and even a pheochromocytoma. I saw several doctors that year, each who ordered different types of blood work. One doctor was so unsure what was happening that she ordered twenty two vials of blood. Yet, I was still left without any answers.

And Then Came Covid

After my mental health and anxiety had not improved with medication and therapy, my mom felt there still had to be an underlying issue. This is when she found and took me to a Lyme specialist in the fall of 2019, who immediately diagnosed me with Lyme disease and bartonella, and later, mast cell activation syndrome (MCAS). Physically, my symptoms were manageable. However, I contracted the first strain of COVID-19 in May of 2020, and my life has never been the same. Within the next few months, I started experiencing joint pain, severe migraines, vertigo, severe fatigue, and continued mental health issues. I even had to drop all of my classes in the fall semester of 2020 because I missed nearly two weeks of school from having a fourteen day long migraine. I began developing neurological and cognitive issues, such as trouble focusing and thinking and I had with memory. I switched to a different Lyme specialist, and this time I even tested CDC positive, which is more uncommon than not in those with Lyme. I started yet again another regimen of antibiotics and herbs. I spent most of that year couch ridden, sleeping much of the day, and constantly in hot Epsom salt baths to ease the joint and muscle pain. It felt like my mind and body were completely outside of my control, almost like my autonomy was taken from me. I was on several combinations of antibiotics until I eventually switched doctors again. This new physician was recommended by my Lyme literate dietitian, and was extremely knowledgeable of complex cases. I still see her to this day.

The next year I went back to school part time, only taking two classes each semester. Before the fall semester, I was diagnosed with babesia, and a few months into the semester I was diagnosed with hypothyroidism. These diagnoses often come together in the case of Lyme disease, but a new diagnosis is always a lot to take in. In class, I would forget what I was saying mid-sentence, which made me self-conscious and hesitant to participate. I struggled to balance the fatigue, physical pain, and brain fog with school. Yet, I successfully completed those two semesters.

Medication-Induced Pancreatitis

Finally, my senior year began: Fall of 2022. I was still attending part-time, but was now taking three classes as well as a lab each semester. In late September, early October I started having these acute episodes of severe pain in my upper abdomen that spread to my back. Because I have been medically gaslit so many times and I also have a high pain tolerance, I was nervous to go to the doctor. These episodes felt like I should have been in the emergency room, but because they only lasted an hour I was afraid to go to the hospital in fear that they would brush me off as a young female having stomach aches. I dealt with the pain for almost four weeks before I finally went to a doctor.

As it turns out, I had pancreatitis. I had to go on a mostly liquid diet for two weeks, stop taking my antibiotics and other supplements for Lyme, as doctors believed it was drug induced, with the culprit suspected to be rifampin, or the combination of too many other medications and supplements. I had been on various psych meds for years. Initially they were prescribed for severe anxiety and panic attacks and when I began to get sick, it only worsened. Among the medications I have been prescribed and used are several SSRIs/SNRIs (Prozac, Zoloft, Lexapro, Luvox, and Effexor). I have used sleeping medications such as Prazosin, Seroquel, and trazodone, as well as a tricyclic antidepressant, some benzodiazepines, Wellbutrin, Buspar, hydroxyzine, and different ADHD medications (Concerta, Ritalin, Vyvanse, Adderall, Straterra).

While pancreatitis mostly resolved, my Lyme started to continue to progress. I was having many more neurological and cognitive symptoms, my whole body was tremoring nearly every day, and I knew that we had to take action before the Lyme and coinfections progressed any further. I went back on antibiotics at the beginning of the spring semester, but had many Herxheimer reactions. I was out of it and sweating with fevers in class, all while also managing an internship. Within a few months my tremors became much better, indicating that the antibiotics were working. It was a long and stressful year, but I graduated Magna Cum Laude after having periods of extreme sickness where I questioned whether I would ever graduate.

Right now I’m on Anafranil, Buspar, Trazodone, Hydroxyzine, and Valium. As for Lyme and coinfections, I’m on clarithromycin, Tinidaloze, Valtrex, Mepron, methylene blue, (recently started), low dose Naltrexone, liposomal oil of cinnamon clove and oregano, cryptolepis, Researched Nutritionals MycP, phosphatidylcholine, vit D and C, omegas, ATP360 and CoQ10 for mitochondrial dysfunction (my doctor has suspected mitochondrial death/dysfunction after having COVID the first time, followed by long covid). I’m on a whole bunch of other supplements too to support my immune system, help with mast cell activation/histamines, digestion, brain function, etc. I’m taking between 50-70 pills per day with a few liquids mixed in there. I’m also on thyroid Armour for hypothyroidism as well as migraine medications and Zofran.

Chronic Illness Limbo: Neither Disabled Nor Able Bodied

Something that healthy people may not think about is having to choose your battles in terms of symptoms and treatments. For example, I started methylene blue shortly after graduation. Methylene blue, which is a medical dye, is a relatively newer, yet promising treatment for Lyme disease, but it is a monoamine oxidase inhibitor (MAOI). This means it can interact with psychiatric medications, and, therefore, I had to go off of all of my ADHD medications. The combination of an MAOI and a serotonergic ADHD medication can lead to both serotonin syndrome and a hypertensive crisis. The idea is that over time and with building up the dosage of the methylene blue it will minimize brain fog, a huge Lyme symptom, and help to treat ADHD symptoms. However, it takes quite a while to build up to an adequate dosage of methylene blue, and it also takes some time for it to actually show effects and improvements. Methylene blue treatment has been a bit brutal here and there with Herxheimer reactions.

One of the most daunting and frustrating things about Lyme disease, especially when it becomes chronic, is that there is rarely a trajectory or expected timeline to start feeling better or to reach remission. I’m currently still trying to find my way to remission, but cannot say I am close. Lyme Disease has turned my life upside down. At this point in my life, I thought I would be living up my twenties with either having already started graduate school or a big girl job. Something that people with Lyme disease, and those with other chronic illnesses as well, deal with on a regular basis is not being able to keep up with productivity culture leading to feelings of failure, laziness, or character flaws. Chronic illness is isolating, and, for many, it may feel like there is no place in society for us when we’re neither fully able bodied nor fully disabled. Instead of living up my twenties, I spend most days with my parents and my dog, I rarely drink alcohol or go out with friends, as it is difficult to maintain friendships when chronically ill. I am still trying to find a place to fit into society post bachelor’s degree, without a master’s or doctoral degree. I feel resentful of all of the doctors who misdiagnosed me or gaslit me, letting me go longer and longer undiagnosed, and therefore, untreated, allowing the Lyme to progress. However, I have found friends in the chronic illness community that, even though we have a variety of illnesses and different symptoms, understand the common struggles of chronic illness.

If you suspect you have Lyme, the best thing you can do is go to a Lyme literate doctor in your area, whose names and locations are usually spread through word of mouth due to the politicization of Lyme Disease, which can lead to possible repercussions for doctors who treat Lyme without CDC positive tests, which, like I said earlier, are inaccurate and are not often used as a basis for diagnosis.

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4 Comments

  1. Dear Emma,
    I so empathize with your struggles. You’re so young, and obviously very intelligent and strong. My story is published here too, and I can so relate to much of yours.

    Viruses can lie dormant for years, forced out by other illnesses. So many pharmaceuticals rob our vitamins, minerals and needed nutrients. I had Spinal Meningitis as a child. Later was treated with fluoroquinolones for a serious dog bite, then cellulitis from a curling iron burn. I too caught the “C” in 2020, then in 2022. Recent blood testing showed I had EBV in my past (when, I have no idea), but I discovered I had been Vitamin D deficient for decades. By end of 2019 I could barely walk, get my words out, or function. I had severe nerve pain, muscle pain & weakness, joint and even pain into my bones at times. It was discovered I had thiamine deficiency back in 2015, and again in 2/20. It’s rarely about just ONE deficiency. I’m iron deficient too. Like you, I was tested dozens of times for Lyme, and it’s co-infections; always negative. Researching thiamine helped me understand most of my symptoms. It’s been shown how many medications deplete thiamine and other nutrients. It’s believed that chronic B1 deficiency led to my severe SFN (small fiber neuropathies) or nerve damage, as testing all “known” causes ruled out.

    Sadly, most doctors aren’t trained in recognizing deficiencies nor treating them. I hope you’ve had a full nutrient panel done. There are many case studies and articles here on hormones matter that speak to this topic.

    It’s such a difficult journey. Not being heard or believed is so traumatizing. I so feel for you.

    I’m seeing a naturopath now who’s treating my adrenals, kidneys & liver, and nervous system which have all been affected in my chronic deficiencies /illnesses. I’ve slowly weaned off many prescriptions and like you, take lots of supplements. It’s a challenging journey with many ups and downs. Life can be so unfair sometimes. Wishing you wellness. You are not alone.

  2. Emma Sullivan, I feel for you. 🙌❤️☘️
    Congratulations on all you have achieved, and all you have been through.
    I, too, was dogged by EBV in college and had to take a year off. I have also struggled with chronic health issues and have written for Hormones Matter, if you search for my name.

    I am Irish and have hereditary hemochromatosis (HFE) genes, which add to stored iron, and may have played a role in my vulnerability to infections. My great-grandmother’s maiden name is Sullivan (Alice Purcell, née Sullivan).

    For my migraines I was greatly helped by a micro dose of psilocybin, which is also used to treat PTSD.
    https://blog.petrieflom.law.harvard.edu/2022/04/18/small-doses-of-psychedelics-for-cluster-headaches/

    The psilocybin was so effective, in fact, that it made me question whether the problem wasn’t with the various pathogens / viruses / microbes that would occasionally flare in me, but with me. With my terrain. My pH. Maybe my pH was off, but we weren’t seeing it because my metabolic rate was correcting for it.
    If my pH is too alkaline, it can be “corrected” by a state of metabolic acidosis.
    If my pH is too acidic, it can be “corrected” by a state of metabolic alkalosis.

    Metabolic alkalosis means I am running too cold. It means I have to suppress my thyroid. And my adrenals. If there is an internal, metabolic “pilot light,” I have to keep mine on low. If I let my thyroid and my adrenals run at full speed, I will be too acidic (remember: my terrain is already too acidic), and my brain will not let this take place. Metabolic alkalosis and metabolic acidosis are both life-threatening.

    Here is my question. If I am in subclinical metabolic alkalosis—and my terrain is too acidic—what does that do to my microbes? Does it induce pathogenicity? Sterling Hill (MTHFR Support) once said something that has always stuck with me. If you put 10,000 people in a building filled with Lyme-infested ticks, not all 10,000 will contract Lyme disease. But if you test 10,000 end-stage AIDS patients, 100% will test positive for Lyme.

    My friend was reluctant to visit her mother, dying of Leukemia. “I’m afraid,” she told the oncologist. “What if I expose her to something?”
    “Do not be afraid,” the oncologist said. “With end-stage patients, we could hermetically seal them inside sterile plastic, and they would still get sick. They auto-infect.”

    Auto-infect. What does that mean? It must mean something to do with their terrain.

    I am questioning the work of Louis Pasteur (born 1822), whose work was not without scandal and bitter rivalry. Perhaps we do not understand the fundamental nature of infectious disease. Perhaps it is not about the pathogen. It’s about the terrain. https://www.westonaprice.org/health-topics/notes-from-yesteryear/germ-theory-versus-terrain-the-wrong-side-won-the-day/

    One last thing. Do not be fooled by the noisy applause and the flashy tinsel of productivity culture. Productivity culture will not will the day. The day will be won by all the souls who are striving to make the world a better place. Much of that striving is done quietly in isolation. 💛

  3. If you are using methylene blue have you considered photo therapy with it? Red light therapy potentiates MB when combined. If you haven’t seen it yet here is a deep dive in all things MB with Chris Masterjohn.

    https://www.youtube.com/watch?v=XhgGGbdw4zE

    I have had lyme and EVB reactivated along with other RNA viruses from my long covid. It has been difficult because I also have a history of multiple fluoroquinolone toxicities. I can not do most herbs or drugs that go after lyme except at tiny doses because of the hit on the ETC complexes, so I am focusing on metabolic therapy and also looking at personal potential genetic markers that would interfere with energy production and looking for ways of ameliorating those blocks.

  4. Lyme produces lots of ACIDS like strep does

    It produces lots of quinolinic acid too.

    Lyme and strep both steal your B3

    “Survival in the mammalian host: Nutrient acquisition and metabolism

    Once the bacteria have been introduced into the dermis of a mammalian host, they must replicate and disseminate in order to facilitate the tick-vertebrate-tick cycle that maintains the genus in nature.

    The biosynthetic capabilities of Lyme disease Borrelia are limited, so the bacteria require complex media for growth in the laboratory, and are dependent on acquisition of multiple nutrient classes from the host.

    🟥🟥Uptake of nutrients by cytoplasmic membrane transporters requires that the nutrients permeate through the outer membrane, ➖➖likely through porins. ‼️

    Although the in vivo functional roles of B. burgdorferi porins have not been addressed experimentally, indirect data suggest that the porin, or some other function, of the adhesin/porin P66 may be required in vivo (Ristow et al., 2015).

    BB0406, which like P66 potentially may serve as a porin and an adhesin, facilitates B. burgdorferi infection (Shrestha et al., 2017; Bista et al., 2020).

    Several nutrient salvage proteins required for survival in mammalian tissue have been identified (Table 1).

    👉👉👉PncA, a ◾️◾️◾️nicotinamidase that converts nicotinamide (niacin) to nicotinic acid, is needed to provide a precursor for biosynthesis of NAD (Purser et al., 2003).

    AdeC, an adenine deaminase, which converts adenine to hypoxanthine and, thus, facilitates purine interconversion, and GuaA and GuaB, GMP synthase and IMP dehydrogenase, respectively, are enzymes involved in nucleotide metabolism and are ◾️◾️◾️◾️required for infection of mice (Jewett et al., 2007b; Jewett et al., 2009).”

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8046170/

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