Archive for the ‘Lyme’ Category

Tips & Resources for Living in the Present During Challenging Times

https://globallymealliance.org/living-in-the-present-while-worrying-about-the-future/

MyLymeLife_2-38

by Jennifer Crystal

TIPS AND RESOURCES FOR LIVING IN THE PRESENT DURING CHALLENGING TIMES.

As schools resume and cooler weather rolls in, the country is bracing for a possible second wave of COVID-19. The U.S. death toll recently surpassed 200,000, and the last two weeks have seen an increase of cases in many areas. With concerns about what fall and winter will bring, especially as we move into flu season, it can be hard to stay grounded in the present.

Lyme patients know this conundrum all too well. Late-stage tick-borne illnesses end to follow a relapsing pattern: patients have good days and bad days, sometimes good months and bad months. When we’re feeling well, we have a hard time trusting and enjoying that health, because we know the other shoe could drop at any moment. We, too, are always bracing for another wave.

Not only is it hard to stay present when you’re worried about the future, but it can be difficult to enjoy the present when it itself is difficult. The pandemic has people at their wit’s end trying to negotiate working from home with homeschooling, isolating from loved ones, and worrying about illness and finances. In acute phases of Lyme and other tick-borne illnesses, patients also feel at their wit’s end as they deal with crushing fatigue, joint aches, migraines, and neurological symptoms. In both cases, the suffering can be so intense that people wish they could escape to a better time in the past or future.

While escapism has its merits, it’s important that we accept our current situation(s) and find ways to live presently. Why? Because no matter how bleak the present is, it’s all we are guaranteed. Whether we’re healthy or ill, living in a pandemic or not, none of us know what tomorrow will bring. Therefore, we can’t let the present pass us by.

What I’ve learned from living with tick-borne illnesses for over 20 years, from battling long-haul COVID-19, and from sometimes wanting to escape from both, is this: the best way to stay present is to prepare for the future. Our anxieties are valid and have their place. Acknowledging them can help us prepare for the worst, and that can then allow us to live more fully in the present.

What does preparation look like in practice? During COVID-19, we can wear face masks, following social distancing protocols, wash our hands, and create contingency plans for school and work. While these steps don’t guarantee we won’t get COVID-19, they do lower our risk. Contingency plans give us safety nets.

During periods of remission from tick-borne illness, we can stay on maintenance medication or supplements, continue with adjunct therapies, exercise, eat well, follow good sleep hygiene, and try to keep stress levels down. If we’re in remission or even if we have recovered completely, we can continue to Be Tick AWARE™, taking precautions like wearing repellent, doing tick checks, and staying on cleared paths so as not to get re-infected. We can make sure we have a good support system—doctors, caregivers, resources. As with COVID-19 precautions, these steps won’t make us immune to another tick bite or relapse, but they do lower the risk.

Once we’re prepared for the future, we can live more freely in the present. Even in trying times, there are ways to enjoy ourselves, and ways to reduce stress. In my post “What Lyme Patients Can Teach Us About the New Normal”, I outline some ideas for managing school and work this fall. In my post “Adding Joy and Pleasure to Life, No Matter When”, I talk about enjoying small moments and activities while we wait for health, for bigger moments and activities to be possible, for better days. Even in a pandemic, families can create fun rituals like weekly movie or game nights. Even in the throes of illness, Lyme patients can enjoy a friend’s visit, laugh over just five minutes of a silly movie, or give themselves an at-home spa treatment.

And while we enjoy the present, there’s certainly no danger in hoping for a brighter future, even visualizing it. Sometimes just the idea of hope is enough.

One difference between battling Lyme and living through a pandemic is that we are all experiencing the latter together. We have similar fears. We have similar hopes. And we can find ways to enjoy the present, together. As I’ve said before, there is comfort in that solidarity.

Related Posts:

Corona With a Twist of Lyme: Part 4
What Lyme Patients Can Teach Us About the New Normal
Adding Joy and Pleasure to Life, No Matter When
The Idea of Hope


jennifer crystal_2

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 at lymewarriorjennifercrystal@gmail.com.

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**Comment**

While I’m all about preparing for the future and living in the present, there are numerous inaccuracies in this article that require addressing:

To help alleviate the fear-mongering that is pervasive, the best most productive thing you can do is bolster your immune system. This action will help you no matter what comes down the pike and will give you peace of mind. 

For more:  https://madisonarealymesupportgroup.com/2020/10/13/bartonella-how-to-protect-yourself-from-this-stealthy-intruder/  While this article is about Bartonella, the steps to protect yourself from one invader is true for another.

https://madisonarealymesupportgroup.com/2019/04/04/the-importance-of-gut-health-to-healing-from-chronic-illnesses-podcast-dr-jill-carnahan/

https://madisonarealymesupportgroup.com/2019/01/08/wahls-protocol-impact-of-diet-nutrition-in-ms-other-neurological-diseases/

https://madisonarealymesupportgroup.com/2020/07/13/nutritional-supplements-for-covid-19-prophylaxis-and-symptom-de-escalation/

https://madisonarealymesupportgroup.com/2020/06/15/the-functional-medicine-approach-to-covid-19-virus-specific-nutraceutical-botanical-agents/

https://madisonarealymesupportgroup.com/2020/06/14/potential-interventions-for-novel-coronavirus-in-china-a-systematic-review/

https://madisonarealymesupportgroup.com/2020/08/09/international-panel-of-medical-experts-urges-u-s-government-to-stop-ignoring-intravenous-vitamin-c-as-a-promising-option-to-treat-covid-19/

https://madisonarealymesupportgroup.com/2020/09/14/nebulized-peroxide-covid/

https://madisonarealymesupportgroup.com/2020/06/02/successful-covid-19-critical-care-stonewalled-by-cdc/

https://madisonarealymesupportgroup.com/2020/06/26/math-protocol-shows-profound-impact-on-survival-from-covid-19/

https://madisonarealymesupportgroup.com/2020/09/24/studies-show-proper-levels-of-vitamin-d-slashes-risk-of-covid-as-does-gargling-with-iodine-vaccine-not-needed/

https://madisonarealymesupportgroup.com/2020/09/08/finally-confirmed-vitamin-d-nearly-abolishes-icu-risk-in-covid-19/

As you can see, there is much you can do to make yourself a tough target.  Learn all you can about your own body and potential things you can do to bolster your immune system.  Discuss these options with your doctor and come up with a plan.  This will be a much more effective, long-lasting plan than plopping a mask on.

“Gaslighting” By Some Doctors Can Undermine the Chronically Ill

https://www.lymedisease.org/gaslighting-undermine-patients/

“Gaslighting” by some doctors can undermine the chronically ill

My Lyme Disease is in Remission. How Do I Keep It That Way?

https://globallymealliance.org/my-lyme-disease-is-in-remission-how-do-i-keep-it-that-way/

MyLymeLife_2-41

by Jennifer Crystal

The first time my doctor said the word “remission” for my late disseminated Lyme disease, I cheered.  I’d been in treatment for Lyme and two of its co-infections, babesiosis and ehrlichiosis, for over a year. I’d been on a PICC line, I had experienced many Herxheimer reactions, and I had finally regained some energy. I was having more good days than bad, could exercise at physical therapy, and my brain fog had dissipated enough for me to be able to write a book. I was doing so well that my doctor decided to take me off of antibiotics entirely.

Less than three months later, I relapsed.

Not fully understanding what it meant to have a chronic illness—one that wasn’t entirely going away, even when it was in remission—I’d acted as if I was completely over Lyme. After living with family during my convalescence, I was ready to get back out on my own, so I moved to a different state and started a new job. This turned out to be too large of a leap. The stress of taking care of my own needs, working part-time and worrying about finances, and the lack of defense in my body created a perfect situation for dormant Lyme bacteria to start replicating and spreading once more.

It took another couple of years for me to get back to remission.  Once there, I had to accept that late-stage Lyme is a relapsing illness. For some patients who are treated immediately, Lyme can be cured. But for many of us who were undiagnosed for years and battle persistent physical and neurological symptoms, we always run the risk of relapse. While we can’t necessarily control what spirochetes will do, we can control external factors in our lives that can help us stay healthy for long periods of time. With the exception of minor flare-ups, I have maintained remission for over a decade now. Here are some ways I’ve been able to do so:

  • Medication: For me, it has helped to stay on low-dose antibiotics and a low-dose anti-inflammatory medication. I also do a maintenance anti-malarial medication every few months to keep babesiosis at bay. I have my blood checked every two months to make sure these medications are not adversely affecting me. This is the system that has worked best for me, but it’s not for everyone, because there is no set protocol for treating tick-borne illness; every case is different. Some people find it helpful to pulse medications. Others have luck going off them entirely, and some switch to a completely naturopathic route. Talk to your Lyme Literate Medical Doctor (LLMD) about what’s best for you.
  • Naturopathic/homeopathic remedies: For me, the best way to treat tick-borne illness and maintain my health has been with a blend of Western and Eastern modalities. In addition to medications, I also take some immune-boosting naturopathic and homeopathic supplements.
  • Nutritional Supplements: Lyme disease, and some of the medications that treat it, can deplete your body of important nutrients. It’s important that you have regular blood work to check your levels for vitamins, iron, etc., and for your doctor to prescribe supplements to counter any deficiencies.
  • Diet: I don’t eat gluten and only eat natural sugars, and I don’t consume alcohol or caffeine. For some Lyme patients, eliminating dairy also helps reduce inflammation. I’m conscious of everything I put into my body, trying to nourish it and give it the best fuel possible. I eat lots of fruits and vegetables, whole grains, and lean protein, and I drink plenty of water. I also remember that it’s important to sometimes treat myself, too.
  • Adjunct therapies: When I was acutely ill, I did talk therapy, integrative manual therapy, and neurofeedback sessions several times a week. I also did physical therapy once I was able to. Now I do talk therapy as needed, integrative manual therapy twice a month, and neurofeedback once a month. I also exercise on my own: skiing in the winter; paddle boarding, kayaking and swimming in the summer; and walking and yoga year-round.
  • Good sleep hygiene: One of the worst symptoms I dealt with was insomnia, and even when I could sleep, I had hallucinogenic nightmares. It took neurofeedback, sleep medication, and cognitive behavioral therapy to get my sleep relatively back on track. Now I’m careful to go to sleep and wake up at the same time each day; to power down electronics and quiet my brain before bed; and to keep my room completely dark and quiet. I also nap every afternoon. Your body needs adequate rest to stay healthy.
  • Recognize and accept your needs: If you’ve achieved remission, you’ve come a long way, and you don’t want to lose the gains you’ve made. Still, it can be hard not to focus on the losses you’ve endured, as well. I had to learn to accept and respect my physical and neurological limits, seeing them as needs rather than restrictions.

Accepting that tick-borne illnesses can relapse is not easy, but shifting my perspective and practicing good maintenance routines has helped me to stay healthy—and happy, too.

For more blog posts, click here.


jennifer crystal_2

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 at lymewarriorjennifercrystal@gmail.com.

Illness-Related Fatigue: More Than Just Feeling Tired

https://www.health.harvard.edu/blog/illness-related-fatigue-more-than-just-feeling-tired-

Illness-related fatigue: More than just feeling tired

A common refrain during the COVID-19 pandemic is, “I’m so tired.” After months of adjusted living and anxiety, people are understandably weary. Parents who haven’t had a break from their kids are worn out. Those trying to juggle working from home with homeschooling are stretched thin. Between concerns about health, finances, and isolation, everyone is feeling some level of additional stress during this unusual time, and that’s tiring. We all could use a good, long nap — or better yet, a vacation.

But while a break would be nice, most people — except those who are actually sick with COVID-19 or other illnesses — are able to push through their fatigue, precisely because they aren’t sick. “Tired” is a nebulous word that covers a broad spectrum of levels of fatigue. A crucial distinction, however, is between regular fatigue and illness-related fatigue.

Regular fatigue

Everyday fatigue that is not illness-related starts with a baseline of health. You may feel sleepy, you may in fact be sleep-deprived, or your body and mind may be worn out from long hours, exertion, or unrelenting stress — but you don’t feel sick. Your muscles and joints don’t ache like when you have the flu. You are capable of getting out of bed and powering through the day, even if you don’t want to. A cup of coffee or a nap might perk you up.

This type of fatigue is usually related to external factors: lack of sleep, stress, an extra-hard workout. But internally, your body is working well: your glands and organs are operating properly; infection is not depleting your body of energy; your nervous system may be overtaxed, but it’s not frayed from actual impairment.

Illness-related fatigue

When I was acutely ill with persistent Lyme, babesiosis, and ehrlichiosis (all tick-borne illnesses), as well as chronic Epstein-Barr virus, a good night’s sleep did nothing. Naps were staples of my day that helped me survive but didn’t improve my energy. Drinking a cup of coffee was akin to treating an ear infection with candy. No matter how much I rested, my exhaustion persisted.

I felt like I had the flu, except it lasted for years. My whole body ached. I suffered migraine headaches. I had hallucinogenic nightmares. Exercise was out of the question; at times, I was literally too tired to walk up a flight of stairs or sit at the dinner table. I couldn’t concentrate, unable to read or watch TV. Sometimes I was too tired to talk.

There was no pushing through this level of fatigue, because it was caused by internal factors: illnesses that were ravaging my body. Only when they were adequately treated did I start to get my energy back.

For me, the root causes were bacterial infections (Lyme, ehrlichiosis), a parasite (babesiosis), and a virus (Epstein-Barr). Profound fatigue may also result from a host of other diseases and conditions, including chronic fatigue syndrome, fibromyalgia, and multiple sclerosis.

Is it everyday fatigue or illness-related fatigue?

When determining whether your tiredness is everyday fatigue or illness-related, consider the following questions:

  • Do you feel worn out, or do you feel sick?
  • Have you experienced this before, or does it feel more extreme or unrelenting?
  • When you lessen the load of external factors (work, stress, long days) does the fatigue improve, or does it persist?
  • Do you feel refreshed after a good night’s sleep or a nap?
  • Can you go about your day, or is it impossible to get out of bed?
  • Has the fatigue persisted longer than you would expect?
  • Are you experiencing other symptoms that might point to illness?

The bottom line

No one knows your body better than you do. You know what feels normal, and you know what you feel like when you’re sick. If you are not responding to regular fatigue remedies, your fatigue has persisted over time, you have other symptoms, or you just don’t feel right, it’s probably time to call your doctor.

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**Comment**

I had a Lyme/MSIDS patient state, “I could fall asleep standing up.”  Yep, that about describes it.

The author doesn’t mention it, but a large part of the problem is the unrelenting insomnia.  You would do anything to sleep at night.  But you can’t.

The great news is that appropriate tick-borne disease treatment fixes this or improves it greatly. There are also medications both natural and pharmaceutical that can help.

For more:  https://madisonarealymesupportgroup.com/2020/10/04/lyme-disease-is-associated-with-various-sleep-disorders/

https://madisonarealymesupportgroup.com/2018/08/23/sleep-sweet-sleep/

https://madisonarealymesupportgroup.com/2018/08/07/to-sleep-perchance-to-dream/

https://madisonarealymesupportgroup.com/2018/04/02/cant-sleep-18-plants-herbs-can-help/

https://madisonarealymesupportgroup.com/2016/12/18/ldn/

https://madisonarealymesupportgroup.com/2019/01/16/ldn-cbd/?

https://madisonarealymesupportgroup.com/2019/03/14/melatonin-benefits-uses/

What is Lyme Disease?

https://danielcameronmd.com/what-is-lyme-disease-infection/

WHAT IS LYME DISEASE?

what is lyme disease

Despite the growing number of Lyme disease cases in the United States, many individuals still receive conflicting information and wonder: What is Lyme disease, how do you get it, what is the best treatment, and can it be cured?

Lyme disease is an infection caused by the bacteria Borrelia burgdorferi (Bb), a spiral-shaped organism. The bacterium can be transmitted to a person through the bite of an infected Ixodes scapularis tick (a.k.a., the deer tick or black-legged tick).

Borrelia burgdorferi bacteria is a type of spirochete that can penetrate virtually any organ or system in the body, including the brain and central nervous system, joints, muscles, and heart. This is why Lyme disease is often considered the “Great Imitator,” as it can cause symptoms that mimic many different disorders. Patients with Lyme disease may initially be misdiagnosed with multiple sclerosis (MS), fibromyalgia, chronic fatigue syndrome, lupus, rheumatoid arthritis, psychiatric disorders, among others.