Archive for the ‘Psychological Aspects’ Category

Lyme Disease, Autoimmune Encephalopathy, & Basal Ganglia Encephalitis

http://  Approx. 1 hour, 15 Min.

Nov. 23, 2020

The Links between Lyme Disease and Autoimmune Encephalopathy and Basal Ganglia Encephalitis (BGE) – Presentation and Q&A Part of the PANS/PANDAS webinar series
Professor Craig Shimasaki,
CEO of Moleculera Labs,
Oklahoma USA Presentation

Category:

Lyme, Psychological Aspects, research

“Healing Can’t Happen in a Bubble of Fear”

https://www.lymedisease.org/amy-scher-bubble-of-fear/

Amy Scher: “Healing can’t happen in a bubble of fear”

By Amy B. Scher

In order to fully heal, you are going to have to let go and lighten up (mostly on yourself).

That’s what I tell people when they are trying to micro-manage every itty bit of themselves and their protocols in order to heal. It may seem like an easy suggestion to follow after all they’ve been through. However it was personally one of the most difficult parts of healing for me to embrace.

I lived in a bubble of fear, worried that everything I did or didn’t do would make or break my healing. But  eventually, it became clear to me that healing will not (and cannot) happen in a bubble of fear. Fear is contradictory to the environment that is needed for wellbeing.

While much went into my ultimate recovery from Lyme, the act of lightening up and letting go had one of the most profound impacts on my journey.

When we suppress ourselves, we can end up feeling anxious, depressed, and sick. If healing is all about getting free to experience a full life again, we must also pay attention to freeing ourselves from the patterns and behaviors that no longer serve us.

Lightening up does not always come easy, but it’s so worth it, and it does come if we let it.

The tyranny of perfectionism

My parents raised me with all the love and silliness you’d expect from the hippies that they were. They always praised me as smart, sweet, artistic, and kind.

But instead of taking these compliments as truth, the part of me that analyzed and internalized everything contorted them into a rule: I must be perfect.

With no one else requiring this of me, I took perfection on as my calling, my purpose. As I grew older, the pressure of this piled on me like a thousand pounds. I strived to be the one who made everyone happy and was celebrated for great things, but I also longed to be one whose faults went unnoticed.

When I strayed from the person I thought I should be—by not getting perfect grades, not being the perfect friend, or making a mistake—my insides would clench. I spent a lot of time rehearsing in my head what things I could have done differently, better. Even though my parents didn’t seem  bothered by any of my imperfections, I worried I might somehow be less of a shining star to them.

By the time I’d been suffering with chronic illness and my body had been falling apart for a good long while, I had assigned much of the blame to myself. Somehow, I must have not done this life thing good enough, perfect enough. Now, perfection was something I owed to the people around me as an apology for being the glaring burden I felt myself to be. I tried hard to convince myself I deserved mercy in this new small life, yet still, even on my near-deathbed, I felt I wasn’t doing sick perfect enough.

The truth is this: I was unloved by myself long before my physical body went astray. And it had become painfully obvious that this pattern was crushing my being and assaulting my immune system. At some point, I decided that if I didn’t lighten the f**k up, this pattern of perfection was going to kill me. I sensed that maybe it had already started to in some way.

The self-criticism trap

You cannot bully yourself into doing enough good or being good enough to feel good—and good enough to be loved, especially by yourself. That’s just not how it works.

Thanks to Stanford University’s Center for Compassion and Altruism Research and Education, we now have scientific data that shows us how and why self-criticism isn’t healthy. (Although we probably didn’t need scientific proof on this one). Self-criticism “makes us weaker in the face of failure, more emotional, and less likely to assimilate lessons from our failures.”

In fact, in a 2012 study published in the US National Library of Medicine, a link between self-compassion and negative states such as depression and anxiety was apparent across 20 studies. Because self-compassion is associated with lower levels of self- criticism, and self-criticism is known to be an important predictor of anxiety and depression, this is where we’re going to start our work.

Even outside of these examples, there has been much information that’s emerged over the years on how positive emotions, including love and acceptance, have a direct impact on your physiology, particularly your nervous system. If you beat yourself up all the time about what you are or aren’t doing, it makes sense that your system would read that self-criticism as danger and stress and react to it in just that way.

The practice of self-compassion is learning to lighten up on yourself just as you would with someone close to you who you loved and cared for. You’ve probably been criticizing yourself for a long time. If this hasn’t worked yet, it’s probably time to try something new

Release attachment to symptoms

During my experience with illness, I spent a lot of time obsessing over every new sensation in my body. I was in a state of constant overdrive, trying to figure out what each symptom was from or how to make it go away. I always alerted my doctors, who also seemed perplexed by what they meant, which of course made me feel even more worried.

Ultimately, I started to approach my body and its symptoms as not warning signs of something severe (as long as my doctor had already been notified), but as just something my body was doing that may not have a clear-cut explanation. I learned how, sometimes, to just let my symptoms be, releasing the massive amounts of energy I spent consumed by trying to solve them.

This is what I learned: sometimes they mean nothing.

We spend so much time analyzing our symptoms, guessing what they could mean, and obsessing over when they’ll go. And sometimes, we need to do that. But other times, we need a break. The truth is that despite all of our incessant “figuring out,” sometimes we just won’t know what our body is doing. We also won’t always know what healing might be taking place despite the raging symptoms. I had my worst month of symptoms came just before I turned a corner toward healing.

Give yourself permission to live a little

I spent most of my life in California, where I ate organic food, held my breath when I walked by a smoker, and focused on controlling my environment to control my health. After I was diagnosed with chronic Lyme, I became even more attuned to my lifestyle and surroundings—afraid that every misstep would kill me.

The turning point for me happened when I was in India in 2007, where I had traveled for stem cell treatment. That was my first hint that I needed to learn to let go. I had to. No choice. No time to get used to an entirely different world and medical system.

At the request of one of the nurses, I had given the staff at the hospital a list of foods I could and could not eat. On the could list: protein and veggies. On the could not list: everything else. Over the years, my brain had been programmed with messages like dairy is bad because it causes inflammation, sugar feeds the Lyme bacteria, and carbs are evil. And while maybe some of that has truth to it, being ridiculously strict about my diet only caused me more intense stress.

When the doctor saw the list, she came to my room with it and asked, “But what about your healthy cells? They need some sugar. Dairy is not bad for them. Carbs are okay in moderation! Each night, you can have a small amount of red wine and chocolate. You need some pleasure too.” All I could think was, Are you trying to kill me?

An epiphany

It wasn’t until I was squatting on a mud-smudged grocery store floor that what she said began to sink in. My whole existence for years had been dedicated to “killing” Lyme. I had built my entire life around Lyme disease, the one thing that I didn’t want. What about the rest of me?

“Mom! Look!” I had found a packaged chocolate lava cake, the kind where you add hot water to the plastic tray full of batter and it magically puffs up into dessert. It was inflatable chocolate cake, and it was a miracle in a country that was hard for me to find food I enjoyed.

This is when I had an epiphany that informed the rest of my healing journey:

What if, in my furious effort to find the cure, I had been missing something critically important all along? What if I loosened the death grip I had on my own life? What if healing is beyond what you eat and how perfectly you take your supplements? What if enjoying life and lightening up didn’t look like healing, but was a tiny step toward it?

Chocolate cake, just like the other lessons I learned, would become part of my protocol; one that brought me joy and helped to teach me that the healing journey doesn’t always look like perfection. Sometimes it looks like lightening and loosening up.

Amy B. Scher, an energy therapist, has written several books on healing, including: This Is How I Save My Life: Searching the World for a Cure – A Lyme Disease Memoir (When doctors have all but given up, when a diagnosis eludes you, and when every test result raises more questions than answers, how do you save yourself?); How To Heal Yourself From Depression When No One Else Can (Scher’s accessible approach to helping anyone struggling with depression to reclaim a joyful life). How To Heal Yourself From Anxiety When No One Else Can (A unique, go-at-your-own-pace book, full of hands-on techniques and guidance that illustrate one profound truth: healing from anxiety is possible). She can be found online at amybscher.com.

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**Comment**

Some great advice in here.  I couldn’t help considering the COVID debacle that’s been thrust upon us.  The same advice about being unable to heal while in a ‘bubble of fear’ is also true for a virus.  Fear is an emotion that will zap your strength and lower your immune system by putting you in hyper-drive, yet this is precisely what our corrupt public health ‘authorities’ have foisted upon an unsuspecting public.

Firstly, accepting death is #1 on the list toward living fully while on planet earth.  Secondly, (despite the denial by public health authorities and a complicit main stream media) there are effective treatments for both COVID and Lyme/MSIDS.  Obtaining good medical help is crucial, and in my experience Lyme literate doctors (LLMD’s) are probably your best bet for both illnesses as they are open-minded, up to date on the science, and willing to go outside the box.  When I felt like I was on death’s door from COVID, my LLMD utilized his knowledge once again and squared me away.  I write about the treatment that worked here. Within 1-2 doses I felt like a new person – demonstrating the importance of effective treatment.

These attributes are what make a good doctor, yet for both diseases we are clearly seeing the monopolization of medicine where doctors not following the narrative are censored, bullied, maligned, and persecuted.

It’s an old, old tactic that continues to be deployed.

Category:

Activism, Lyme, Psychological Aspects, Treatment

Study Detects Tick-borne Illness in Teens Hospitalized for Depression

https://www.lymedisease.org/hospitalized-teens-lyme-depression/

Study detects tick-borne illness in teens hospitalized for depression

June 10, 2021

Dr. Dan Kinderlehrer

By Daniel A. Kinderlehrer MD

Last month I posted an article on this website describing Diane, a teen-age girl suffering from anorexia nervosa.1 As it turned out, she had Lyme disease and was co-infected with Babesia, Bartonella and Mycoplasma. She responded well to antibiotics and three years later she still has no evidence of an eating disorder.

Dr. Nancy Brown, a colleague, was in my office during one of Diane’s appointments, and I commented to Nancy, “Wouldn’t it be great if we could test a group of people who suffer from anorexia nervosa for tick-borne infections?”

“Well,” she told me, “I’m the medical consultant at a residential treatment center for adolescents with mental health issues. Let’s see if I can get permission to do this.”

We did receive cooperation from the residential center. In addition, IGeneX Laboratory agreed to test a dozen patients free of charge for Lyme, Bartonella, and tick-borne relapsing fever (TBRF). Moleculera Labs also generously agreed to test our patients with the Cunningham Panel. (The Cunningham Panel is a blood test which measures the levels of circulating autoantibodies associated with certain neurologic and psychiatric symptoms.)

Testing depressed adolescents

It was not difficult to get 10 volunteers at the residential center. None had eating disorders, since the center was not equipped to deal with that, but all 10 were diagnosed with DSM-5 Major Depressive Disorder, seven were additionally diagnosed with Generalized Anxiety Disorder, and three had made serious suicide attempts.

With the exception of one subject previously diagnosed with celiac disease, none had a known physical disorder. All of these teens had severe psychological dysfunction requiring intensive residential treatment—they could not hack it at home or go to school.

Here is what we found2:

  • Lyme disease immunoblot was positive by IGeneX criteria for three teens.
  • A more liberal interpretation of the test results consistent with analysis by most Lyme docs, indicated nine had antibodies to Lyme.
  • Antibodies to Bartonella were detected in three, and borderline positive in a fourth.
  • Antibodies to TBRF were detected in four subjects, and borderline positive in another two.
  • Antibodies to Streptococcus were detected in three subjects, and borderline positive in a fourth.
  • The Cunningham Panel was positive in nine of the 10 teens.
In all likelihood, nine of 10 had antibodies to tick-borne infections. And nine of 10 had evidence of autoimmune encephalitis.

Autoimmune encephalitis is the medical term for ‘Brain on Fire’: inflammation in the brain that can result in serious mood, behavioral and cognitive disorders.

PANS/PANDAS

Susan Swedo at the National Institute of Mental Health first described this condition in children who developed neuropsychiatric symptoms shortly after a strep infection. She termed it Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections—PANDAS.3,4

Not long afterwards, it became clear that other microbes besides Streptococcus can trigger autoimmune encephalitis. Hence, the name was broadened to Pediatric Acute-Onset Neuropsychiatric Disorder—PANS.

The microbes that thus far have been shown to trigger PANS include several viruses including Epstein-Barr, the common cold, influenza, and chicken pox as well as Bartonella, Mycoplasma and mold.5-7

There was a recent report out of Italy describing two boys in whom SARS-CoV-2, the virus that causes Covid-19, triggered PANS.8 It is likely, but not definitive at this time, that Borrelia burgdorferi, the Lyme pathogen, also triggers PANS.

In 2013, the PANS collaborative consortium published criteria for the diagnosis of PANS.9 These include the sudden onset of obsessive-compulsive disorder (OCD) or severely restricted food intake, without a known medical disorder that would account for these symptoms. In addition, the case definition requires two of the following seven criteria to make the diagnosis:

  • Anxiety
  • Emotional lability (mood swings) or depression
  • Irritability, aggression and/or oppositional behavior
  • Behavioral (developmental) regression
  • Sudden deterioration in school performance
  • Motor or sensory abnormalities including tics and involuntary movements
  • Somatic signs and symptoms—like sleep disturbances and bed-wetting

It is important to have clear diagnostic criteria so that researchers studying this condition are always studying the same population of subjects, but not all kids with autoimmune encephalitis will fulfill these criteria. In particular, most of my patients do not have an acute—i.e, sudden—onset of their symptoms. Instead, the onset may be stuttering or slow.

An epidemic of mental illness in adolescents?

According to the National Institutes of Mental Health, nearly one-third of all adolescents ages 13 to 18 will experience an anxiety disorder, and 8% of those will become severely impaired.10

The NIMH also reported that the prevalence of major depressive disorder in adolescents in 2017 was 13.3%, with nearly three-quarters of those becoming severely impaired.11 Suicide has replaced homicide as the second most common cause of death for teenagers ages 10 to 19 in the United States.12

In other words, we have an epidemic of mental illness in adolescents.

Our investigation was small. Ten adolescents picked at random with mental illness severe enough that they required institutionalization—nine of them had evidence of tick-borne infections and nine had evidence of autoimmune encephalitis.

Clearly there is a need for more investigation, but I suspect that many of the teens afflicted with mental illness in the U.S. are suffering from brains on fire. Their illness may present as emotional, but the cause may be organic. In the next installment I will discuss the diagnosis and treatment of PANS.

Dr. Daniel Kinderlehrer is an internal medicine physician with a private practice in Denver, Colorado, devoted to treating patients with tick-borne illness. He is the author of  Recovery From Lyme Disease: The Integrative Medicine Guide to the Diagnosis and Treatment of Tick-Borne Illness.

References

  1. https://www.lymedisease.org/lyme-bartonella-eating-disorders/#:~:text=An%20infection%20can%20cause%20an,but%20also%20trigger%20anorexia%20nervosa.
  2. Kinderlehrer DA, Brown N. Microbial Induced Autoimmune Inflammation as a Cause of Mental Illness in Adolescents. Global J Med Res. 2021;21(1):1-13.
  3. Swedo SE, Leonard HL, Kiessling LS. Speculations on Antineuronal Antibody-Mediated Neuropsychiatric Disorders of Childhood. Pediatrics. 1994Feb1; 93(2):323–6. 39.
  4. Swedo SE, Seidlitz J, Kovacevic M, Latimer ME, Hommer R, Lougee L, Grant P. Clinical presentation of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections in research and community settings. J Child Adolesc Psychopharmacol. 2015 Feb; 25(1):26-30.
  5. Breitschwerdt EB, Greenberg R, Maggi RG, Mozayeni BR, Lewis A, Bradley JM. Bartonella henselae Bloodstream Infection in a Boy With Pediatric Acute-Onset Neuropsychiatric Syndrome. J Cent Nerv Syst Dis. 2019Mar18; 11. DOI: 10.1177/1179573519832014.
  6. Frankovich J, Thienemann M, Rana S, Chang K. Five Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome of Differing Etiologies. J Child Adolesc Psychopharmacol. 2015; 25(1):31–7. DOI: 10.1089/cap.2014.0056.
  7. Tisi G, Marzolini M, Biffi G. Pediatric acute onset neuropsychiatric syndrome associated with Epstein–Barr infection in child with Noonan syndrome. Europ Psychiatry. 2017; 41(Supplement): S456. DOI: 10.1016/j.eurpsy.2017. 01.492.
  8. Pavone P, Ceccarelli M, Marino S. SARS-CoV-2 related paediatric acute-onset neuropsychiatric syndrome. Lancet. 2021;5:e19-21.
  9. Chang K, Frankovich J, Cooperstock M, Cunningham MW, Latimer ME, Murphy TK, Pasternack M, Thienemann M, Williams K, Walter J, Swedo SE, and from the PANS collaborative consortium. Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. J Child Adolesc Psychopharmacol. 2015; 25(1):3–13.
  10. https://www.nimh.nih.gov/health/statistics/any-anxiety-disorder#:~:text=An%20estimated%2031.9%25%20of%20adolescents,than%20for%20males%20(26.1%25).
  11. https://www.nimh.nih.gov/health/statistics/major-depression
  12. Curtin SC, Heron M. Death rates due to suicide and homicide among persons aged 10–24: United States, 2000–2017. NCHS Data Brief. 2019Oct;352.

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**Comment**

Very, very important work being done here with a dire need for more. Unfortunately researchers are choosing to go with the more popular and lucrative work surrounding “climate change,” despite the fact credible, independent work has been done disproving it of having anything to do with tick and disease proliferation.

Few understand the dark underpinnings of our public health ‘authorities’ and the research they pay for and control and the fact they own patents on everything from the organism, to the tests that reveal it, to the vaccines against it.

For more:

Category:

Lyme, Psychological Aspects, research

What Helps Improve Cognitive Function for Lyme Patients?

https://www.globallymealliance.org/blog/what-helps-improve-cognitive-function-for-lyme-patients

What Helps Improve Cognitive Function for Lyme Patients?

by Jennifer Crystal on June 2, 2021

<span id="hs_cos_wrapper_name" class="hs_cos_wrapper hs_cos_wrapper_meta_field hs_cos_wrapper_type_text" style="" data-hs-cos-general-type="meta_field" data-hs-cos-type="text" >What Helps Improve Cognitive Function for Lyme Patients?</span>

When Lyme disease bacteria (spirochetes) cross the blood-brain barrier, they can cause myriad neurological impairments and nervous system inflammation. Neurological Lyme disease can manifest as brain fog, memory loss, word and song iteration, confusion, anxiety and depression, sleep disturbancesand more. “Lyme brain” is terribly frustrating for patients who could once multitask, but now lose their train of thought mid-sentence, or can’t find their way to the store. Many have written to me to ask what helped me improve cognitive function. Here’s what helped the most:

  • Pharmaceutical treatment: Lyme is a bacterial infection, and you can’t improve cognitive function without killing the bacteria that’s causing it. Sometimes symptoms can get worse as bacteria die off faster than your body can eliminate them (a Herxheimer reaction), but in my experience, the payoff is worth the temporary increase in discomfort and decrease in capabilities. Your doctor may want you to pulse antibiotics in order to give your body time to recover. There are particular antibiotics that work best to penetrate the blood-brain barrier and improve cognitive symptoms. Because every single case of tick-borne illness is unique, there is no set protocol, but your Lyme Literate Medical Doctor (LLMD) can tailor one to your needs.
  • Supplements: Certain supplements can help reduce inflammation and neurotoxins. Glutathione and Essential Fatty Acids are two that are commonly used (but again, I can’t give specific medical advice; you need to check with your LLMD about which supplements, and what dosage, would be appropriate for you). I’m wary of doctors who sell supplements themselves (you want to make sure your health, not their financial gain, is their top priority). Though supplements may seem good because they’re “natural,” they can have side effects and contraindications, so don’t always assume that natural is better. For me, I’ve needed a combination of both pharmaceutical treatment and supplements to improve all of my symptoms of Lyme disease, babesiosis, and ehrlichiosis.
  • Rest: Your body needs adequate sleep to heal. This can be really hard to come by for Lyme patients, and it also can be aggravating and downright boring to be in bed all the time. But your body is working really hard to fight infection, and it needs all the rest it can get in order to do so. Even now, a decade into remission, I still can get neurologically overstimulated and experience a flare-up of cognitive symptoms. When that happens, I need to wind down, give myself some quiet time, and get extra sleep.
  • Anti-inflammatory foods: In my post “The Lyme Diet,” I discuss foods that help with reducing inflammation. There are good foods to avoid, like gluten and processed sugar, and good foods to include, like fruits, vegetables, and proteins. Certain foods have antioxidant properties. Whether eating them has helped my cognitive function, I can’t say for sure, but I know it hasn’t hurt, and I’ll take any excuse to have a piece of dark chocolate!
  • Pacing: It can be enticing to keep reading a book that you’re really into, or to binge watch a show, but doing either can be taxing on a Lyme-riddled brain. Often, I don’t know I’m overstimulated until it’s too late. I feel fine reading one page, and then another, and then all of a sudden, my head feels like it’s full of molasses. I’ve learned to stop while I’m ahead. You might tell yourself, “I have to stop reading after two pages, even if I feel fine, and rest for twenty minutes.” Eventually, as your infections get better, you’ll be able to do more, but you have to think of improving cognitive function as a marathon, not a sprint.
  • Making lists: Because memory can be so impacted by tick-borne illness, it can help to make to-do lists for each day. You can literally write down tasks like “shower” and “eat lunch,” and check them off when you’ve done them (it’s especially helpful to set reminders, either in writing or on your phone, to take your medications). Write out only what you can handle for one day at a time, and put other items on lists for later in the week. Remember to include self-care items, too, like “rest” or “take a bath.”
  • Neurofeedback: This non-invasive brain training program helps your brain to work optimally (the system I use is called Neuroptimal). I use it to help quiet my brain down; others use it to sharpen their thinking. The process uses your brain’s own information to figure out what it needs. It’s a relaxing process that involves watching kaleidoscope images on a screen (you can close your eyes if those feel overstimulating) and listening to gentle music while sensors are attached to your head. You’ll hear occasional skips in the music, which are signals that help your brain get back to its optimal state. Neuroptimal is great because it works on the whole brain at once. The neurofeedback practitioners I’ve worked with have cautioned against doing neurofeedback that only works on one section of the brain at once, saying this can actually worsen Lyme brain. I first got connected with my practitioner through a sleep clinic (which meant that sessions were covered by insurance). Your LLMD may want to do a sleep study, or refer you to a practitioner; you can also find one through the Neuroptimal site.
  • Body work/cranial sacral massage: I do a type of hands-on therapy called Integrative Manual Therapy, which encompasses cranial sacral therapy and neurofascial processing. This gentle, light touch helps lymphatic drainage, and often calms my limbic system Easing these symptoms reduces my brain fog, allowing for better cognitive function. Some physical therapists offer this type of therapy (which again means that insurance can cover it).
  • Play word and memory games: To help sharpen my brain (and keep me busy), a friend used to play writing games with me over email. He’d set rules such as, “Tell a story about a dog using only three syllable words” or “Tell me the name of someone we went to school with, and then come up with another using the first letter of that person’s last name.” I think these games helped improve my memory. It was nice to do them over email because I could take as long as I needed to complete them.
  • Recall the music or games of healthier times: Memory care units for the elderly sometimes use music therapy to help prompt long-term memory. People struggling with short-term memory are often able to recall and sing entire songs from their youth. In the midst of convalescence, I played an old card game, “Scrooge.” This elaborate version of double solitaire requires memory, quick thinking, and strategy. These were not functions that I could generally execute well in those darkest days of illness, but while playing that card game, I suddenly could. When I won handily, my opponent quipped, “There’s nothing wrong with that brain of yours!”
  • Limit stimulation: I quickly learned that loud noises, crowded rooms, and flashing screens would stimulate my brain to the point of shut down, and then brain fog would settle in. By limiting the amount of time I spent on screens, and avoiding particularly fast-paced shows, I was able to keep my brain calm so I could engage in other activities like writing and reading.
  • Accept that there will be setbacks: Healing from tick-borne illness is not linear. You will regain some cognitive function, and then have periods of brain fog, and then start improving again. Eventually, if you follow your doctor’s protocol and stick to some of these tips, you should start to see more good days than bad. I still sometimes struggle with cognitive issues, but they are slight now. When I was at my sickest, I couldn’t read or watch TV. I mixed up my words. My head ached. Now, I can write, teach, read and watch TV in short segments, and generally carry on with good cognitive functioning, so long as I work to maintain my health.
Writer

Jennifer Crystal

Writer

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her using her email.

Email: lymewarriorjennifercrystal@gmail.com

Category:

Chiropractic Care for MSIDS, diet and nutrition, Lyme, Psychological Aspects, Sleep, Supplements

The Impatient Patient

https://www.globallymealliance.org/blog/the-impatient-patient

The Impatient Patient

by Jennifer Crystal on April 12, 2021

<img style="box-sizing:inherit;max-width:100%;height:auto;" src="https://www.globallymealliance.org/hubfs/Imported_Blog_Media/MyLymeLife_2-87-3.png&quot; alt="The Impatient Patient“>

by Jennifer Crystal

When would I get better? Why was I not seeing improvement every day?

Recently a friend’s toddler son asked her for a snack. Holding his baby sister, my friend told her son he’d need to wait a minute. He looked at her squarely and asked, “Does anyone like to wait?” Kids have a way of telling it like it is. The truth is, no one is great at patience, especially when we’re hungry, tired, or anticipating a big event. Perhaps the hardest time to wait is when we’re sick. “Patients” are ironically named because when we’re stuck in bed waiting to feel better, waiting for medication to work, waiting to live, we become very impatient.

I was impatient even before I got sick. A high-achieving lifestyle and the pressures that come with it always made me feel like I needed to hurry up and reach the next goal. If I didn’t, I might miss an important opportunity. I felt that if something didn’t happen right away, it might never happen at all. Then I got sick with chronic active Epstein-Barr virus, Lyme disease, babesiosis, ehrlichiosis, and possible Bartonella and all that forward motion and achievement came to a grinding halt. I was bedridden, hooked up to an IV, with nothing to do but wait. When would I get better? Why was I not seeing improvement every day?

Unfortunately, it often takes a long time for late-stage tick-borne illnesses to develop (for me, it took eight years to get an accurate diagnosis), which means it can take a long time to get better. Due to Herxheimer’s reactions, trial and error periods to figure out each person’s individual protocol, and setbacks from factors that are both in and out of our control, recovering from tick-borne illness is not a linear process. It can be especially hard to be patient when you feel like you’re taking two steps forward and one step back, or even one step forward and two steps back. Whether you’re three or ninety-three, no one likes to be slowed down.

When days, months, and even years of our lives are lost to illness, we feel increased urgency. We’re afraid that we’re losing precious time, as I discussed in my post “ A Lymie’s View from 39”. Illness-induced FOMO—fear of missing out—naturally manifests as impatience. A natural response to this impatience is to push our bodies to do more than they can so that we don’t miss out entirely. The minute I started to feel a little bit better, I’d go out and spend that energy. And while I enjoyed whatever I did, I paid for it with a flare of symptoms that sent me back to bed for days.

Not waiting caused damage, just as if my friend had not asked her son to wait, she might have dropped the baby or spilled the snack. She told him to wait because she had everyone’s well-being in mind. In just a few minutes, her son got his snack, and no one was hurt in the process. Patience paid off. Still, waiting—especially when it involves resting—goes against everything society has taught us about leading productive, meaningful lives. Though work-life balance has become more valued, busyness and achievement are still seen as badges of honor.

What bothered me most as an impatient patient was that I wasn’t doing anything. A friend who’d spent years recuperating from a traumatic brain injury helped reframe my thinking by telling me, “Your body is working really hard to heal right now. In order to let it do its job, you need to rest.” This realization helped me be more patient and loving with my sick body, more willing to give it what it needed—rather than fight against it—so that I could achieve my long-term goal of health.

Now that I have achieved and retained remission, I still can be impatient; it’s simply my nature. But I have learned to slow down; to pace myself; to trust my doctors, medications, and body; and most of all, to trust the process. I can’t get back the years I lost to illness. But I’m enjoying the ones I have now—which I wouldn’t have gotten if I’d pushed through the sicker years—and it truly does feel like the life I was meant to live is unfolding in its own time. I have to trust that it will continue to do so, as long as I am patient.

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Writer

Jennifer Crystal

Writer

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her using her email.

Email: lymewarriorjennifercrystal@gmail.com

Category:

Babesia, Bartonella, Ehrlichiosis, Lyme, Psychological Aspects, Uncategorized, Viruses