The Limitations of Lyme Testing From A Nurse’s Perspective

Recently, I had the honor of interviewing Ruth Kriz, a Lyme-literate, 30-year nurse practitioner in Washington, D.C. and a fellow Lyme disease survivor, to discuss the diagnosis and treatment of tick-borne infections, the best Lyme disease test, biofilms, and more. In part one of this two-part series, Ruth has been a multi-time presenter at the International Lyme and Associated Diseases Society (ILADS). Here, she reveals how she began treating chronic Lyme disease, the limitations of testing, and communication strategies between patients and clinicians.

Ruth has an education background and has taught nursing to LPNs through graduate-level nurse practitioners. In her years as an educator, she’s observed that the medical community is often undereducated in their knowledge regarding Lyme disease and tick-borne infections; many healthcare providers believe Lyme disease is an acute infection and are misinformed regarding the chronic, persistent nature of this illness. Ruth has chosen to speak publicly about her expertise with Lyme disease and coinfections, like Bartonella and Babesia, in the hopes of helping patients receive a proper diagnosis, along with widening the medical community’s understanding of these illnesses.

Below is my interview with Ruth Kriz:

Understanding the Shortcomings of the Most Common Lyme Disease Test

Jenny Buttaccio (JB): How did you get started treating Lyme patients?

Ruth Kriz (RK): I guess you could say it was through the back door. I had interstitial cystitis for 11 years, and I started doing more precise diagnostics with broth cultures because the traditional cultures were coming up negative. One of my patients told me that she had been diagnosed with Lyme disease. When she treated Lyme, her interstitial cystitis went away. So, that started me looking into the connection between tick-borne infections and its connection with interstitial cystitis. Since then, I’ve treated over 2,500 patients. In 98 percent of them, I’ve been able to document tick-borne infections.

JB: In your view, why are so many patients having a hard time getting diagnosed with Lyme disease?

RK: According to CDC, the way you diagnose Lyme is through an antibody test. An antibody test is not testing for Lyme itself; it’s testing for the body’s immune system response to Lyme. When you first get infected, your IGM (immunoglobulin M) is the early responder. It goes up in four to six weeks. Therefore, doing a test for Lyme when you first see a bull’s-eye rash, find a tick, or think you’ve been infected is really inaccurate because it’s going to take several weeks for those antibodies to go up. The IGM stays up for four to six months. As it’s coming down, the IGG goes up. The IGG can stay up for a year, sometime two years. Then, it starts to go down as well. Using a test that only looks at immunoglobulin IGG and IGM is going to miss a lot of people who were either tested too early or too late. So, the race has been on to try to find a better way — better markers – of diagnosing the Lyme.

There are tests that to do DNA testing on urine, blood, or cerebrospinal fluid. In regards to cerebrospinal fluid testing, the literature from 15 years ago says less than 3 percent of people with neurological Lyme test positive with a spinal tap, so that’s not helpful. There are some better antibody tests like IGeneX as well, where you’re more likely to get a positive western blot. But, to answer your question, there are really no good diagnostic tests for Lyme if you’re not in that window to get a good antibody response. The best we can do right now is to look at other markers that respond in the body when Lyme is active.

JB: I’ve heard other doctors suggest that Lyme disease is a diagnosis based on clinical presentation and supporting tests can be useful to help confirm the disease. Do you also hold this belief? As a follow-up question, why are so few clinicians willing to treat Lyme?

RK: That’s what we’re left with if we don’t have a reliable test. Because of the political climate surrounding Lyme, some clinicians feel if they don’t have any documentation in a patient’s chart to prove they have Lyme, they’re going to come under fire from their state medical boards. So, yes. It does need to be a clinical diagnosis. But sometimes practitioners are put in a corner. And to step out on that limb, they might risk their license.

Regarding the second part of the question, the medical education system is geared toward acute infections. Overcoming the infections that were public health threats (like smallpox, anthrax, diphtheria, and polio) and had high morbidity and mortality rates, naturally became the focus of research. Even though 70 percent of the patient population a family practice physician sees deals with chronic illness, the medical community insists on acute care. So the mindset of the doctor is you come up with an ICD-10 code. You have your particular protocol. This is the medicine you give. Then, the patient leaves the office. There’s a whole different understanding as to how you treat acute infections, and how you treat chronic infections.

JB: Are there ways patients could better communicate their Lyme disease symptoms or needs to clinicians?

RK: Often, doctors feel like their job is first to rule out the big, nasty stuff going on. After that, they’re not willing or able to tackle the intensive, patient-care demands of a chronically, sick Lyme patient. From my perspective, I think Lyme patients could interface more effectively with the medical community if they could write down the points they want to talk about during their appointment. Also, they can be sensitive to the fact that the practitioner has a schedule and 10 or 20 people after them on that schedule. It’s hard for practitioners to deal with a large Lyme population because their needs are extensive. Not every practitioner is emotionally or knowledge-base equipped to handle the complexity of patients with Lyme. I love what I do. I’ve had Lyme myself. But I also see things from the other side. There’s a lot of skill involved in managing complex patients, and not everybody feels competent enough, or is interested enough, or can financially even afford to provide that level of care.

Patients must become informed, be educated and be their own advocate for Lyme disease treatment. They need to find a practitioner they feel is hearing them for their best chance at Lyme disease recovery.

To find a Lyme literal medical professional in your area, fill out the Doctor Search page on the ILADS website, visit the state support group page on LymeDisease.org, or check Facebook for online forums in your area. Many support group moderators and facilitators will be able to provide you with a list of doctors in your region. 

This article was first published on ProHealth.com on April 25, 2017 and was updated on February 27, 2020.


ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is an occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVD, A New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio.

Can Sauna Therapy Benefit ME/CFS Patients?

Many people swear by weekly (or even close to daily) sauna use to support overall health. There are different types of saunas to choose from, including traditional dry saunas, infrared saunas and steam saunas. In this article, we will explore the use of traditional, dry saunas and infrared saunas for people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). Steam saunas, while they do work up a terrific sweat, can expose you to vaporized chemicals such as chlorine, unless the steam is from purified water. Since using purified water is uncommon in gyms and spas, we will stick to the other two types of sauna. 

One 2018 review discusses the use of saunas for overall health, particularly with regard to traditional dry saunas, showing that consistent use is widely beneficial for the general population. Traditional, dry sauna use has been shown to lower the risk of high blood pressure, vascular diseases, pulmonary diseases, and neurocognitive diseases. It may even help with weight loss. But is it good for people living with ME/CFS? 

Different Types of Saunas for ME/CFS Patients

For some people with ME/CFS, sitting in a traditional, dry sauna — which are typically heated to between 170 and 210 degrees Fahrenheit — is just too much. It can be as exhausting as strenuous exercise, and cause post-exertional malaise (PEM). But using an infrared sauna is a great alternative to traditional, dry saunas. Infrared saunas are gentler, and may help people with ME/CFS build their tolerance to heat exposure. 

In contrast, infrared saunas are cooler than traditional, dry saunas. They are typically heated to around 120 degrees Fahrenheit (with some variation). The infrared light penetrates several centimeters into the body (deeper than the hot air in a traditional sauna), and stimulates sweating at lower temperatures. People can usually tolerate more time in an infrared sauna than a traditional one, and sometimes can work up a better sweat. Because infrared saunas may be better tolerated than dry saunas, they might be better suited to aid in the body’s detoxification efforts. In general, the benefits of sauna use are powerful enough to make gradual exploration worth a try.

Benefits of Sauna Therapy for ME/CFS Patients

1. Sauna Therapy for Detoxification:

One of the primary ways saunas confer benefits is through sweating. Sweating is nature’s simplest detoxification pathway, as it utilizes our skin, avoiding taxing our liver or kidneys. When we sweat, our body dumps toxic metals, pesticides, pharmaceutical residues, and other harmful molecules out through our sweat glands. Basically, the more you’re able to sweat, the better you detox.

Functional medicine doctors and naturopaths seem to agree that the myriad of chemicals, metals and pesticides we are exposed to in modern life are great contributors to the rise of chronic illness. There is almost no way to avoid some contact with poison chemicals in this day and age, unless you live on a self-sustaining organic farm (and even then it’s still questionable). People with ME/CFS often have a hard time exercising enough to work up a good sweat. And everyone’s liver and kidneys could use a break due to the chemicals most of us are regularly exposed to as part of living in an industrialized society. The sauna offers a gentler alternative to exercise that may be tolerable, especially in small doses initially. 

2. Sauna Therapy to Support Mitochondrial Health:

Besides sweating, saunas offer another important health benefit. This one is especially of interest to those healing ME/CFS. One 2017 study shows heat stress stimulates mitochondrial biogenesis in skeletal muscle. In other words, heat exposure caused mitochondria in skeletal muscle to multiply. Mitochondria are little cell organelles responsible for creating the molecule ATP— our body’s most important energy source. More healthy mitochondria means more energy.

Mitochondria actually respond quite well to some levels of stress, and in the case of saunas, it’s heat. This kind of low-level, beneficial stress is called hormesis.

Hormesis stimulates mitochondria to grow bigger and stronger, and to multiply. Essentially, mitochondria adapt to the stress load, and the adaptations are beneficial to our health. Hormesis increases the amount of energy available in the body. Heat-related hormesis may be a reason why ME/CFS patients have shown a subjective improvement in fatigue after repeated sauna use — both using far infrared saunas and traditional dry saunas. 

3. Sauna to combat depression and anxiety

Sauna use has been shown to stimulate the release of endorphins in the brain, and make receptors more sensitive to those endorphins. This may help with symptoms of depression and anxiety, which can affect some people with ME/CFS. A 2015 study showed that people with ME/CFS symptoms showed a subjective decline in negative mood after a period of traditional, dry sauna treatment.

Contraindications for Sauna Use

If you’re interested in incorporating sauna therapy as part of an ME/CFS treatment protocol, note that there are some contraindications for use:

  • Use cautiously if you have orthostatic intolerance issues, including POTS (postural orthostatic tachycardia syndrome), or are intolerant to heat. Ask your doctor for advice before undertaking any kind of thermal therapy. 
  • If you’re pregnant, have a high-risk pregnancy, or aren’t accustomed to sauna use, you should check with your doctor before trying it.
  • If you have a heart condition or are at risk for heart attack, please consult with your doctor.
  • Talk to your healthcare professional if you have a bleeding disorder, such as hemophilia. Sauna therapy may not be right for you.
  • If you have other chronic, medical conditions, please talk to your doctor before attempting to use a sauna. 

The Takeaway

People with ME/CFS may tolerate infrared saunas more easily because they can begin with a lower temperature setting to avoid overtaxing your system. However, because of the difference in temperature, traditional saunas most likely stimulate greater heat-related hormesis, so you may be unable to tolerate them without experiencing a setback or crash. 

It’s worth experimenting with both kinds of saunas, and seeing what your body likes best. There is never a one-size-fits-all-approach in healing. Maybe you will choose a mix of infrared and traditional sauna use. Or, maybe one will work for you much better than the other. Trust your body, and go with what feels good.


Shona Curley lives and works in San Francisco. She is co-owner of the studio Hasti Pilates, and creator of the website www.redkitemeditations.com. Shona teaches meditation, bodywork and movement practices for healing Lyme disease, chronic illness and pain.

 

 

References:

Continue reading “Can Sauna Therapy Benefit ME/CFS Patients?”

An Overview of Lyme disease and Thyroid Health

Many Lyme disease patients experience hypothyroidism — myself included — at some point during treatment. When a person is hypothyroid, the thyroid gland (a butterfly-shaped gland in the front of the neck) fails to produce sufficient amounts of thyroid hormone, which makes it difficult for the body to function optimally.

The thyroid gland regulates specific functions of the body, like metabolism, weight, body temperature, fertility, heart rate, cholesterol levels, and more.

There are many reasons Lyme patients may experience an under-functioning thyroid. A few of those include: environmental toxicity, damage to endocrine tissues as a result of Lyme; medication side effects, an autoimmune condition such as Hashimoto’s thyroiditis or Grave’s disease, adrenal insufficiency, mineral imbalances, and more.

What are the Symptoms of Hypothyroidism?

Symptoms of hypothyroidism may be vague, confusing, and imitate those of Lyme disease. When the condition goes untreated, symptoms may increase in severity. According to the patient-centered website, Stop The Thyroid Madness, some of the symptoms patients reported experiencing included (but weren’t limited to):

  • Less stamina than others
  • Fatigue
  • Feeling weak
  • Long recovery period after any activity
  • Chronic low-grade depression
  • Major depression
  • Often feeling cold
  • Cold hands and feet
  • Less perspiration than others
  • Tendency to put on weight because of low metabolism
  • Constipation
  • Hair Loss
  • Dry skin in general
  • Inability to concentrate
  • Excruciating pain during period
  • Brain fog

How is Hypothyroidism Diagnosed?

To help differentiate thyroid problems from Lyme disease symptoms or the associated coinfections you might be exhibiting, a doctor may order blood tests like a TSH, free T3, free T4, reverse T3, thyroid antibodies, vitamin D, and iron levels. But thyroid lab tests aren’t always accurate. Some physicians and functional medicine practitioners will consider your symptoms along with test results to determine if you’re showing signs of subclinical hypothyroidism (this is where your labs fall within the normal range, but you still have symptoms of a thyroid that’s not performing up to par).

How is Hypothyroidism Treated?

Typically, a standard course of treatment for hypothyroidism may involve a daily dose of replacement thyroid hormones like natural desiccated thyroid (Armour Thyroid, Nature-Throid, or Westhroid) or synthetic versions of the hormones (levothyroxine or liothyronine). Not all medications work for everyone, especially pure T4 hormone preparations, as many with Lyme can’t convert T4 into active T3 hormone, which is what the body needs to function, — so it may take some trial and error to determine which product and dosages work best for your particular thyroid problems.

What Herbs or Supplements Can Support my Thyroid Gland?

To support your body’s thyroid production, some physicians may recommend the following herbs and supplements (As always, please talk to your doctor before adding any of these supplements into your protocol):

1) Multi-vitamin: A multivitamin provides an assortment of vitamins and minerals (like iodine, Vitamin A, B vitamins, selenium, iron, and zinc) to form a foundation of necessary nutrients for thyroid production and overall hormonal health.

2) Adrenal Support Supplements: The thyroid and adrenal glands work in tandem with one another to supply several hormones to your body and give you energy. To adequately address hypothyroidism, your doctor may need to look at treating adrenal insufficiency as well. When the adrenal glands are weak, they can contribute to an underactive thyroid. Although it can be hard to treat chronic Lyme disease symptoms and strike a balance between treating the thyroid and adrenals adequately, doing so can be a critical step to seeing improvements in your health or resolving some of your symptoms.

3) Vitamin D: A 2013 study showed a correlation between hypothyroidism and low vitamin D; the lower the vitamin D levels, the higher the likelihood the survey participants had either hypothyroidism or an autoimmune thyroid condition. Vitamin D needs to be present in adequate amounts to modulate the immune system and for the thyroid hormones to affect the cells of the body. For some Lyme patients, reaching the desired vitamin D level could result in a better functioning thyroid.

A word of caution regarding vitamin D: Many healthcare providers have differing ideas about what the appropriate dosage range is for Lyme patients, so please discuss this with your doctor before using it.

4) L-tyrosine: L-tyrosine is a non-essential amino acid; meaning, your body must obtain it through food, which supports thyroid function. The thyroid gland utilizes both tyrosine and iodine to make thyroid hormone. L-tyrosine may help to support an underactive thyroid, but is not often used as a stand-alone supportive supplement. If you’re taking prescription thyroid medication, you should only include L-tyrosine according to your doctor’s recommendations. Too much of this supplement can trigger anxiety, irritability, insomnia, or other side effects.

5) Omega 3 fatty acids- Omega 3’s, like those found in fish oil, walnuts, and flaxseeds, have been shown in studies to reduce inflammation in the body, balance hormones, improve immunity, and promote a healthy thyroid. Omega 3 fatty acids can thin your blood, so consult with your doctor before taking them if you’re already on a blood thinner.

Bottom line?

Since the thyroid gland is involved in many processes of the body, such as energy production, immune function, and cognitive function, getting your thyroid levels into a desirable range may be key to reducing some of your symptoms and aiding in your recovery from Lyme disease.

This article was first published on ProHealth.com on July 24, 2017 and was updated on February 20, 2020.


ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is an occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVD, A New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio.

References:

Continue reading “An Overview of Lyme disease and Thyroid Health”

How to Stop Lyme Disease Joint Pain

Joint pain, or Lyme arthritis, is one of the most common chronic Lyme disease symptoms. Lyme-related joint pain can occur anywhere in the body, and each Lyme patient will present arthritic pain patterns differently. This is because Lyme spirochetes can lodge anywhere in the body where collagen, their favorite food source, exists, suggests Stephen Harrod Buhner, herbalist and author of Healing Lyme

Why do Lyme patients experience joint pain?

Lyme spirochetes are adept at burrowing into cells and intracellular spaces to evade immune detection. Now concealed, they proceed to break down collagenous structures for food. As collagen breaks down, the structures in the body housing spirochetes become inflamed and painful. Joint spaces, for example, are rich in collagen. Both cartilage and synovial fluid are collagenous, and therefore, are great for housing and feeding these destructive bacteria.

Regardless of your Lyme disease symptoms, a cornerstone of treatment should be protecting collagenous structures throughout the body, recommends Buhner. The goal is to make collagen resistant to spirochetes, thus disrupting their food supply and killing them off. Buhner suggests a number of herbs and supplements with this goal in mind. Here are two of the most important for joint pain.

Supplements to Protect and Regenerate Collagenous Structures

1. Japanese Knotweed root

Japanese Knotweed (Polygonum cuspidatum) is at the heart of Buhner’s herbal protocol for Lyme disease treatment. (I’ve been drinking knotweed tea for three years now.) Knotweed root effectively shuts down the inflammatory pathways used by Borrelia to break down collagen. Knotweed also supports immune function, improves blood flow, is antimicrobial and a calming agent. It spreads well throughout the body and even crosses the blood-brain barrier (protecting myelin sheaths in the brain as well as the joints). It assists other herbs and drugs in penetrating deep into the body, thus enhancing their effectiveness. Knotweed can be taken as a tea or tincture, or directly as a powder. Ask your doctor for dosage advice. 

2. Hyaluronic Acid 

Hyaluronic acid, or HA, is a major component of collagenous tissues throughout the body, including synovial fluid and cartilage. HA increases the viscosity of synovial fluid, helping it lubricate and protect the joints. It strengthens cartilage, making it rubbery. 

Of course, Lyme spirochetes break down HA — this is a major root cause of joint pain. In cases of Lyme arthritis, Buhner suggests taking an HA supplement, which helps replace what the bacteria are breaking down. Plus, it helps the body replace and heal compromised cartilage and synovial fluid in the joints. As an added measure, herbs that prevent the breakdown of HA, in particular echinacea, can be beneficial, too.    

More Ways to Lessen Lyme-Related Joint Pain

Beyond supplementing to support and protect the joints, there are other practices you can use to lessen joint pain symptoms. Both improve the movement of fluids in the body — assisting with detoxification and lowering inflammation.

3. Sauna

From my personal experience, nothing feels as good as a long, restorative, time-out in the sauna. There is quite a bit of research to back up sauna use to alleviate chronic pain. Saunas increase circulation, assisting the body in removing inflammation and healing joint spaces. Sweating is also an excellent way to detox, and it doesn’t tax the liver or kidneys — which are often overburdened already during Lyme disease recovery. 

Infrared saunas are especially good for improving circulation, as the heat penetrates deeper into tissue. I use one at a local Korean spa. Go slowly as you experiment with time in the sauna making sure you tolerate it well. Work up to 30 minutes using the sauna as often as you like. Eventually, you’ll sweat profusely.

4. Rolling fascia with a foam roller

Joint pain often radiates throughout the body by inflaming fascia (connective tissue including muscle sheaths, tendons and ligaments). Whole fascial patterns can become inflamed and painful, severely limiting mobility. Though it can be very frustrating not to be able to exercise when you are in pain, there are ways to move that won’t harm your joints or connective tissue, which will help to move inflammation out of your system and relieve your pain a bit. One of my favorites is rolling.

The easiest tool for rolling out tight or inflamed fascia is a foam roller. They are cheap, and available online and in sports stores. I have quite a few in my Pilates studio, and use them daily on my clients and myself. You can also roll with specialized balls, but they hurt a little more, and you might want a teacher to guide you. 

You can use a foam roller anywhere on your body. Pick the areas where you have pain, and try looking up videos online on how to roll them out. The pressure from the roller moves fluids like blood and lymph, releasing inflammation and blockages from sore fascia. It also breaks apart knots in fascia, which again allows fluids to move more freely. In many cases you have to support your body weight in order to roll effectively – and if this works for you it’s actually quite strengthening. (Just be sure to use your core muscles to support your spine.)

After you’ve rolled for a couple of minutes, get up and see if your pain has improved. If it hasn’t, it’s your body’s way of telling you that that particular exercise isn’t right for you. We are all different, so let your body be your guide. If you need more help, try a good Pilates teacher in your area with experience in pain management. 

On a personal note: I have found all of the above methods to be very effective in reducing my Lyme related joint and fascial pain. I love my weekly saunas, and appreciate my time spent on the foam roller with my clients — even when it hurts so good. After three years of Lyme treatment, my pain is effectively zero, which I find truly amazing. I hope these tools help you along your healing journey as well. 


Shona Curley lives and works in San Francisco. She is co-owner of the studio Hasti Pilates, and creator of the website www.redkitemeditations.com. Shona teaches meditation, bodywork and movement practices for healing Lyme disease, chronic illness and pain.

 

 

References:


Buhner, Stephen Harrod. Healing Lyme, Natural Healing of Lyme Borreliosis and Coinfections Chlamydia and Spotted Fever Rickettsioses. Silver City, NM. Raven Press, 2015.

Masuda A, Koga Y, Hattanmaru M, Minagoe S, Tei C. The effects of repeated thermal therapy for patients with chronic pain. National Institutes of Health Website. DOI: 10.1159/000086319

The 4 Relapse Survival Tips Everyone Should Know About

It came on gradually, so I was unprepared when the symptoms began adding up. First, there was worsening insomnia each night despite my usual sleep regimen. Then, the inability to nap reared its ugly head again. Next, the crushing fatigue overtook my body, and the most basic, daily tasks fell by the wayside. Finally, I had trouble sitting up, and before I knew it, two weeks had gone by, and I hadn’t been able to get out of bed. To my surprise, I was in the midst of a full-blown Lyme relapse.

But I’d done everything right. I adhered to a strict herbal protocol for chronic Lyme disease, ate a nutrient-dense diet, implemented all the detox and support strategies I’ve written about in past articles, reduced my exposure to toxins, spent time in nature, took all my supplements, and participated in exercise as my body allowed. In all aspects of treating this illness, I’d been the picture-perfect image of a compliant patient. How did I end up in this position?

Living with Lyme disease is unpredictable, with many twists and turns along the journey. Certainly, Lyme relapses and setbacks are discouraging, but here’s what I’m doing to rebuild my strength and help me survive this dreaded blow to my healing. If you find yourself in a similar situation, I hope you’ll find these tips useful as well.

Lyme Relapse Survival Tips

1. Rest until you have the strength to fight again.

Often, I view Lyme disease as a battle — something to overcome — but the constant urge to fight leaves me weary. During this setback, I’ve chosen to rest and resist the pressure to hop on a treatment bandwagon; the frantic, treatment-chasing that I’m prone to doing leaves me exhausted. For me, resting and gathering information from people who are seeing progress allows me to feel like I’m making an informed decision. I have limited energy reserves and strained financial resources, so I want my next Lyme diseasetreatment steps to be strategic and not impulsive.

In addition to physical resting, I realize that I need to rest on an emotional level as well. I unplug from social media more often, and I’m working to cultivate positive, in-person relationships with people that strengthen me, as opposed to emptying me of my short energy supply. Minimizing my exposure to people or things that deplete me has proven to be a very beneficial step forward for my health.

Although you may not be in control of when Lyme decides to rear its head, remember that you have the power to make small, lifestyle adjustments, to conserve your limited resources. Also, if you need more emotional support than your family and friends can provide, don’t be afraid to reach out for professional help. If you’re not part of a support group, join one and ask for recommendations for a compassionate mental health professional who can see you through this tough time.

2. Be honest with your healthcare provider about how you feel.

When I feel like my body is going haywire, I tend to panic and find a new LLMD as soon as possible. But this time, I had an honest conversation with my healthcare practitioner, and she sensed my frustration over the years I’ve lost to this illness. “We’re not going to give up,” she said. “But we need more information as to what we’re dealing with.”

Of course, I wanted a more immediate answer, but I trusted her instincts to further investigate my symptoms. After a little detective work, we found two coinfections (Ehrlichia and Mycoplasma) and exposure to toxic mold. Although I can’t say I was thrilled with these findings, I am somewhat relieved to have found something tangible to guide my treatment.

But for some Lyme patients, there comes a time when their clinician runs out of treatment options, and they must make the difficult decision to look elsewhere. If you find yourself in this situation, move on knowing you’ve given it your all, learned a tremendous amount about your health, and are better equipped to advocate for yourself as you pursue other possibilities.

3. Find a way to add positive experiences to your life.

When I’m feeling dismayed by an onslaught of Lyme disease symptoms, it’s easy for my mind to get stuck in a negative headspace. However, this time, I’m trying to break that pattern and add more positive experiences to my life. For me, one of those positive experiences is writing. When I’m lying in bed typing (the location from where I write almost all of my articles), I’m transported to a place where a sense of accomplishment takes over, and sickness ultimately takes a back seat.

What outlets do you use to bring some positivity into a desperate situation? Are you a painter? Musician? Lover of comedies? Whatever it is that brings you joy, hold tight to it during your relapse. While being optimistic during a setback may not cure you of Lyme disease, it will help you persevere and have courage during this challenging time.

4. Remember, this setback isn’t your fault.

When I’m at a low point, it’s easy for me to become self-critical and heap blame on myself. The broken record running through my mind sounds a little like this:

See, I knew I shouldn’t have eaten a bite of that doughnut!

If only I hadn’t been slacking on my detox.

I know I should be spending more time outside each day. I need to make that a priority!

But, the truth is that I’ve been waging war against Lyme for years, and I’m willing to bet many of you have been as well. Lyme doesn’t always play by the rules, and sometimes, setbacks happen despite our best efforts to stick to our treatment plans. Challenge the thoughts that run through your head telling you it’s your fault. What words of encouragement or advice would you give a friend or family member? Treat yourself with the same kindness you would extend to others and be proud of how far you’ve come. It takes an enormous amount of inner strength and stamina to deal with a chronic illness day in and day out.

This article was first published on ProHealth.com on November 26 2017 and was updated on January 30, 2020.


ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is an occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVD, A New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio.

Deep Sleep Improves ME/CFS Symptoms — Here’s How to Get It

One of the main characteristics of chronic fatigue syndrome (AKA ME/CFS or myalgic encephalomyelitis/chronic fatigue syndrome) is non-restorative sleep. No matter how much sleep someone with ME/CFS gets, they just don’t feel rejuvenated. They may sleep 12 hours and still wake up bone tired. 

One of the major factors contributing to non-restorative sleep is lack of deep, dreamless sleep during the night. During deep sleep, brain waves slow to delta waves (0.5-4 hertz), eye movements slow, and it is very difficult to be awakened. This kind of deep sleep is required for energy restoration, brain detoxification, tissue repair and immune strength. Without it, sleep isn’t rejuvenating.

How Non-Restorative Sleep Impacts People with ME/CFS

People with ME/CFS are more likely to hover in rapid eye movement (REM) sleep, where most dreaming occurs. Or, they may stay in an even lighter, more irritating form of sleep; tossing and turning and waking up when someone so much as breathes funny. REM sleep is important for processing memory. It’s not, however, used to repair and restore the brain and body as much as deeper sleep. (I doubt anything beneficial is taking place during tossing and turning.) 

Sleep problems like missing out on deep, restorative sleep can worsen ME/CFS symptoms, and it is a risk factor for other illnesses as well. There’s a reason sleep deprivation is considered torture! It’s a vicious cycle — if the brain and body don’t have a chance to self-restore at night, we become more vulnerable. 

Living with ME/CFS isn’t easy. However, there are some simple things you can do to help put your sleep cycles back in order and get the deep, nourishing sleep your brain and body require to mitigate symptoms. It starts with understanding the relationship between our circadian rhythm, the hormone melatonin, and our mitochondria — and, how we can support health in all three.

What is the Circadian Rhythm?

The circadian rhythm is the 24-hour waking and sleeping cycle shared by all living beings (including plants). The human circadian rhythm is maintained in part by our pineal glands, located deep in the brain. The pineal gland contributes to circadian rhythm by secreting the hormone melatonin — which tells the body it’s time to relax and go to sleep. Melatonin also helps the body drop into deep sleep, where healing and repair occurs.

 Melatonin’s Importance to our Mitochondria 

As it turns out, melatonin is not just a sleep hormone — it’s implicated in important aspects of energy production and maintenance as well. The reason being, melatonin is intimately connected with the health of our mitochondria. 

Mitochondria are cell organelles that are responsible for creating most of our energy. In essence, mitochondria break down food, combine it with oxygen, and produce energy as a result. Without functioning mitochondria, we would die within seconds. Most people with ME/CFS have some dysfunction in mitochondrial energy production. 

Melatonin helps maintain healthy mitochondria (and corresponding strong energy levels) in a few different ways besides supporting deep sleep:

  • Melatonin assists with mitophagy (mitochondria + autophagy) – a process that preserves healthy mitochondria by breaking down and  repairing damaged ones. 
  • Melatonin is a powerful antioxidant. It penetrates mitochondria and protects them from oxidative damage. By comparison, other antioxidants, like vitamins C and E, are not taken up by mitochondria.
  • Melatonin has anti-inflammatory properties that benefit mitochondria.
  • Melatonin helps regulate mitochondrial bioenergetic function.

Symptoms of ME/CFS can be helped by keeping levels of melatonin high at the right times, leading to a healthy circadian rhythm and strong mitochondria. Here are some easy ways to work toward this:

1. Use blue light blocking glasses at night:

Our circadian rhythms are connected to the cycles of day and night, light and dark. As the sun sets and our world darkens, melatonin levels rise, getting us ready for sleep. At least, they used to before we started spending all our time indoors watching Netflix at night. 

Too much blue and green light from electronic screens makes it hard for the body to know when to raise melatonin levels. Even light from LED light bulbs can interfere with melatonin production. 

The good news is (as long as you don’t mind your kids making fun of you) you can wear blue light blocking glasses, starting at least an hour before bedtime. The absence of blue light tells your body to raise melatonin levels. Blue light blocking glasses are easily available online, with a wide range of price and quality. The downside is that they turn everything orange, but deep sleep is worth it. 

2. Get out in sunlight, especially in the morning: 

Bright, full-spectrum light in the morning helps tell the body to wake up and get active, decreasing melatonin levels. Try to get outside in the morning, ideally without sunglasses or UV blocking corrective lenses, and get some sunlight for twenty minutes or so. 

If it’s too dark where you live or you need to be indoors, there are special full spectrum bulbs available that help as well. They are nice to have in an office or workspace, too.

3. Supplement with melatonin or its precursor: 

Melatonin supplements are inexpensive and readily available without a prescription. (I take 10mg every night, and so do my kids.) The precursor to melatonin, 5-HTP, is available as well. Ask your doctor to suggest a reputable brand, and the right dosage. You can take melatonin or 5-HTP an hour before bedtime, or you can take it in the middle of the night if you wake up and have trouble falling back to sleep. Just avoid taking it before you want to wake up, as it can affect how alert you are.

Hopefully these tools will have you sleeping more deeply and assist with your ME/CSF recovery. Sleep is good medicine. Enjoy some deep z’s starting tonight. 


Shona Curley lives and works in San Francisco. She is co-owner of the studio Hasti Pilates, and creator of the website www.redkitemeditations.com. Shona teaches meditation, bodywork and movement practices for healing Lyme disease, chronic illness and pain.

 

 

References:  Continue reading “Deep Sleep Improves ME/CFS Symptoms — Here’s How to Get It”

How to Improve Balance in People with Fibromyalgia

The chronic pain suffered by fibromyalgia patients can make it very trying to exercise regularly. Exercise can exacerbate pain, and who needs that? The problem, however, is that the lack of movement brings about physical weakness, stiffness, less support for the joints, and loss of balance. All of the above can increase chronic pain levels and hinder fibromyalgia recovery.

Loss of balance is especially troubling. People with fibromyalgia need to keep their proprioception (an awareness or sense of where the body is in space) and balance keen, as falling and injury can cause an uptick in chronic pain, and worsen the cycle of weakness, stiffness, and other fibromyalgia symptoms.  

Luckily, maintaining (and even improving) proprioception and balance does not need to be strenuous or painful. There are very gentle exercises that, when done with some regularity, help quite a bit — they may even lower fibromyalgia pain levels over time. 

Loss of Balance in Fibromyalgia Patients

Most fibromyalgia patients experience muscle stiffness, which can increase chronic pain symptoms. In my clients, I’ve found that the stiffer the muscles, the more pain they experience. Stiff muscles are hard and knotted even while at rest — it’s as though the muscle fibers forget how to relax. Some fibromyalgia patients even feel bruised and sore to the touch due to their muscular tension.

Every person carries tension in different areas of the body. It’s a fair guess that wherever you experience pain, your muscles are tight and bound. Tight muscles inhibit proprioception and balance. The steps to improve your balance, then, involve locating your tightest muscles, and begin to loosen them. Here’s how:

1. Work with your tension patterns 

Begin by exploring the sore spots on your body with your hands, ideally while sitting or lying down, so you can relax. Healthy muscle tissue is watery while at rest. In fact, muscles are 79% water! They are not supposed to feel like rocks. 

Think of a baby or a puppy sleeping – their tissue is soft, resilient, and malleable. Hold an image of softness as you explore your own muscle tissue, and deepen your breathing. The imagery, breathing, and gentle touch will help your tension patterns relax. It will also teach you where you need this kind of release the most.

Be sure to include your hips and your legs, especially if you have lower back pain. If an area of the hips or legs is too tight, it can pull on the pelvis and even tilt it slightly off its axis, making lower back pain worse. Take time to explore the sides of your hips, and the backs, sides and fronts of your thighs and calves. Any release you find in these areas will help to right the pelvis and take pressure off the spine. (Of course, you can outsource this practice to a good massage therapist!)

2. Try stretching

Stretching does not work for everyone. For some it increases pain, and in that case, forget it. But for most people, gently stretching your tightest muscles will help them to soften, lengthen and release.

Once you have determined your tight spots, find a good stretch that works for you. Invent one yourself, or look online. 

Remember to keep it gentle! I have my clients grade the intensity of their stretches on a scale from 1-10, with 10 being “I’m dying.” Keep the intensity below a 6 for best results. If you push too far, your muscles will tighten up. Deep breathing helps with stretching as well as massage.

Your body will let you know immediately if a stretch is right for you. Again, I use an intensity scale to help determine this. Grade your pain level before you start, on a scale from 1-10. Stretch gently for a few minutes (it takes at least 90 seconds for muscles to lengthen, which can feel like a long time until you get used to it). Then get up, walk around, and grade your pain again. If the stretch worsened your pain in any way, it’s not the right stretch for you. 

Trust your body as your guide. If stretching works for you, it should leave you feeling lighter — like you can stand up straighter and balance more easily afterward.

3. Retrain the brain to feet connection

Research has shown that balance is determined, in part, by our central nervous system’s (CNS) ability to sense the soles of our feet as they make contact with the ground — and with good reason. We spent most of human evolution walking around on uneven surfaces barefoot. Through most of human history the sensory feedback our CNS gathered from feet to earth contact was important so our feet could feel roots, sharp rocks, unstable surfaces, and anything else that might impede our balance or make forward progress unsafe. Now, however, we have rubber soled shoes that almost eliminate sensory input from the soles of our feet and can limit mobility.

Luckily, due to a concept called neuroplasticity, your brain has the ability to reconnect to the sensory input that your feet provide. This holds true no matter what your age is — it’s never too late to improve your balance. But first, you’ll need to rebuild your capacity to sense the soles of your feet.

Try these gentle exercises to improve your CNS’s ability to integrate the sensory input coming from the soles of your feet and enhance balance. To gain the most benefit, the exercises are best done barefoot.

Start slowly, and again, listen to your body to determine if the exercises are right for you. If they increase fibromyalgia pain, back off. If you have symptoms like dizziness, vertigo, or orthostatic intolerance issues like POTS, these exercises may not not right for your, or you might wish to keep your eyes open for safety as you try them.

  • Standing with eyes closed: To begin this exercise, hold onto something stable (a firm countertop, a dresser, a sink, etc.). If you feel steady, close your eyes and sense the soles of your feet. Move your feet around a bit to feel the pressure on various parts. Then, if you’re able, let go of what you are holding and try to stand without the assistance of your hands.
  • Heel raises with eyes closed: As you progress and feel safe, try raising your heels off the floor. Again, hold something initially, and then let go as you are able. Pro tip: Make sure your weight is mostly over your big toe and your second toe as you lift your heel. Try lifting and lowering your heels in a calf raise while you maintain your balance.
  • Standing on one foot with eyes closed: If you can, lift one foot off the floor and balance on one leg. Hold on to something until you feel safe letting go. Again, remember to put your weight over your big toe. Letting your weight fall to the outside of your foot will throw you off.

As time goes on, and your balance improves, you can incorporate these gentle exercises into daily life. Try brushing your teeth with your eyes closed. Try standing in line at the grocery store eyes closed, or raising and lowering your heels. If your neighbor looks at you funny, don’t worry, you won’t see them!

I have seen great improvements in my clients’ balance over time, repeating variations on these simple exercises once or twice a week. You can invent your own exercises as well. The goal is just to improve your ability to feel your feet — anything that serves that end works. If you are dorky like me, both the exercise invention and practice is a lot of fun, and the improvement in balance is its own reward. 


Shona Curley lives and works in San Francisco. She is co-owner of the studio Hasti Pilates, and creator of the website www.redkitemeditations.com. Shona teaches meditation, bodywork and movement practices for healing Lyme disease, chronic illness and pain.

 

 

References:

Continue reading “How to Improve Balance in People with Fibromyalgia”

4 Supplements for Mitochondrial Dysfunction and Fatigue

Fatigue is one of the most common complaints among Lyme disease patients. Most of us have heard the well-meaning friend or family member say, “Oh, I’m tired too,” when we voice our reasons as to why we might not be able to participate in a particular activity or event due to our level of extreme fatigue. Simply put it bluntly: The standard levels of tiredness that healthy people experience after working a long day or having a bad night’s sleep are not the same as the fatigue related to an illness. Rather, the sort of exhaustion associated with a chronic condition is best explained, by those of us who are dealing with it on a daily basis, as feeling completely drained or devoid of energy. Some days, we’re lucky just to have the strength to lift our heads from our pillows.

There are many reasons we develop this profound sense of exhaustion, one of the more common Lyme disease symptoms. Our bodies are fighting a whole host of infections. Our adrenal glands are likely overtaxed. Our thyroid gland might be over or underactive. Our sleep may be disrupted by insomnia or pain. There could be genetic factors impeding our body’s ability to detox. Or, we may lack vital nutrients to adequately make energy. Lastly, we may also experience severe energy depletion due to mitochondrial dysfunction.

Let’s examine some of the functions of the mitochondria.

Mitochondrial Dysfunction and Extreme Fatigue

Mitochondria are nicknamed “the powerhouse of the cell” for their ability to carry out the necessary chemical processes that make energy; they are the “energy furnaces” of the cell. “In some, the mitochondrial energy furnaces are defective and cannot keep up with the energy demand of cells and tissues as they work through daily activities. For others, cells and tissues are deficient in certain nutrients that are needed to process food into energy, leaving the tissues energy-starved…No matter the cause, energy depletion causes a downward spiral of fatigue, muscle pain, and stiffness that will not stop until the energy in the affected tissues can be restored,” wrote Dr. Jacob Teitelbaum, MD in From Fatigued to Fantastic (2007, p.29).

Is it possible to improve the function of your mitochondria and regain some liveliness? Yes, it is! There are many natural therapies to optimize energy production in the body, and it will involve some trial and error to find what works for you. Like many things Lyme-related, it can take several weeks to months to notice an improvement in your energy, but don’t give up.

Following are some of the vitamins and supplements that may help to combat fatigue and help support energy production as you heal from Lyme disease.

1. CoQ10: CoQ10, also referred to as “ubiquinone,” is a critical nutrient for every cell in your body to produce energy. It also helps your body preserve other antioxidants like vitamin C and E. Although it’s often found in food, when extreme energy requirements are placed on the body (such as you’re fighting Lyme disease and coinfections), CoQ10 levels may become depleted. Low levels can affect the heart, brain, your overall energy levels, immune function, and more. Your physician can order a blood test to detect your CoQ10 levels. Effective CoQ10 dosages may range from 100 mg to 400 mg depending on your test results and your list of symptoms.

Note: If you’re taking Mepron or Malarone for Babesia, you may need to avoid CoQ10 as it can interfere with the way in which those medications work.

2. D-Ribose: D-ribose is a unique, beneficial sugar that the body utilizes to produce energy molecules that feed muscle cells such as the skeletal muscles and heart. Additionally, daily intake of this supplement looks compelling for those suffering from ongoing fatigue, pain, and muscle tension. Since D-ribose sometimes lowers blood sugar, some people find that it works best to take it with food. Dosages may vary depending on your physician’s preference. Some patients may experience a side effect of feeling overstimulated, anxious, or hyper. If this occurs, reduce the amount you’re taking until that side effect disappears.

3. Acetyl-L-Carnitine: L-carnitine is an amino acid-like compound that is manufactured for the body from meat sources and helps the brain make acetylcholine — a neurotransmitter that helps nerve cell signaling. But patients with Lyme disease or other chronic illnesses may be deficient in this neurotransmitter, leading to symptoms like mental and physical fatigue, poor memory, and impaired cognition. Acetyl-L-carnitine is a more readily absorbable form of L-carnitine, because it crosses the blood-brain barrier more easily, and supports energy production within the brain cells. Effective dosages can start as low as 500 mg and go as high as 3,000 mg. It’s generally well-tolerated. Side effects associated with it include body odor and digestive upset.

4. NADH (Nicotinamide Adenine Dinucleotide):  NADH is a form of vitamin B3, and it supports healthy cellular energy production and metabolism — among other things. It may be beneficial for patients with ongoing fatigue and depression. NADH appears to be safe for most people, but talk to your doctor about dosing instructions. Dosages related to Lyme disease range from 5 mg to 100 mg.

This list describes just some of the supplements that may support proper energy production during Lyme disease treatment. I’d love to hear from you about the things that have helped you reclaim your energy. Please feel free to leave me a comment below!

This article was first published on ProHealth.com on August 23, 2017 and was updated on January 14, 2020.


ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is an occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVD, A New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio.

References:

Continue reading “4 Supplements for Mitochondrial Dysfunction and Fatigue”

Diets and Lyme: Which One is Right for You?

Most people with Lyme disease have problems with “trigger foods” — foods that trigger a histamine response, a rise in inflammation, or some other unwelcome reaction. During Lyme disease treatment, most of us need to restrict our diets to feel the best we can and speed healing. 

What is the best Lyme disease diet? Here are some basic guidelines for creating a healing diet, as well as a comparison of four popular diets that may lessen Lyme disease symptoms.

Basics of a Healing Lyme Disease Diet

Most diets that help to heal Lyme disease, especially chronic Lyme disease,  have a few things in common. Experiment with these basics to find out if they work well for you, or what foods to avoid.

  • Lessen or eliminate sugar intake (especially refined sugar). Not only does sugar increase inflammation, but most bacteria and fungi (like Candida) love to eat sugar. 
  • Try going gluten free. Gluten is notoriously inflammatory, unless you have a gut like a steel trap.
  • Try eliminating dairy. The casein in dairy is also inflammatory for most people.
  • Lessen or eliminate commercially processed seed oils like canola, soy and corn oil. These oils are highly reactive to heat and light, and are often rancid. They raise inflammation and tax the liver and kidneys. 
  • Choose organic, unprocessed foods whenever possible. This reduces your exposure to toxic pesticides and denatured oils. 
  • Buy grass fed, organic meat and pastured eggs, if you eat them. Cows and chickens that eat commercial corn and soy contain a higher ratio of omega-6 to omega-3 fats, and omega-3 fats lower inflammation very efficiently in the body. 
  • Purchase wild caught, smaller fish like tilapia or herring instead of tuna or salmon when you can. Smaller fish absorb less mercury, and wild caught fish (even the big ones) eat their natural diet and are free of the additives fed to farmed fish.
  • Eat nutrient-dense foods, like leafy greens, colorful vegetables and fruits, organ meats and bone broth (if you eat animal products).

These basics will help anyone healing Lyme lower the pathogenic microbial load, lessen inflammation, and decrease the toxic load on the liver and kidneys. 

Beyond the basics, there are several different diets out there that can help to speed healing. All of them can be beneficial for different reasons, depending on your body’s unique needs. Here is a comparison of four of the most popular diets for healing Lyme disease.

1. Paleo

The paleo diet is a very basic diet to lower inflammation. This diet uses the logic that our bodies evolved eating what our ancient Paleolithic ancestors could hunt and forage: plants and meat. The paleo diet eliminates grains, refined sugars, and dairy — all of which only came into use after the rise of agriculture. It also cuts out all commercially-processed sugars and oils, which only showed up on our menus in the last hundred fifty years or so.

The paleo diet lowers, but doesn’t eliminate, sugar intake. The sugars allowed on the paleo diet are fruit, coconut sugar, maple syrup and other natural sugars. Because of this, those with Lyme, who are particularly sensitive to sugar, may need to restrict their diet a little further. Beware, as well, of all the new “paleo” foods out there that are just as processed and commercial as a bag of Doritos. Food corporations are always looking to make a buck!

2. AIP: The AutoImmune Paleo Diet

The autoImmune paleo diet, or AIP, was created specifically for those experiencing autoimmune disorders, or extreme sensitivity or allergy to foods. Many people with Lyme fit into this category.

AIP eliminates all foods that commonly trigger allergic or histamine reactions, or that raise inflammation. This includes grains, legumes, eggs, nuts and seeds, nightshades, shellfish, processed oils and sugars, coffee, and alcohol. On the AIP diet you will be eating fish, poultry, meat, greens, squash, sweet potatoes, and fruit. The meats that are least likely to cause reactions are lamb, venison and bison. Just like the paleo diet, AIP does allow some sugar intake in the form of fruits and unrefined natural sugars. 

The AIP diet diet is very restricted, but I can tell you from personal experience that if your body is freaking out after every meal, the diet is a godsend. After some months (usually six months to a year), you can start adding foods back in and testing your response.

3. The Ketogenic Diet (Keto)

The human body evolved to make energy by burning primarily glucose derived from plant sugars and proteins. You read that right — we turn excess protein into glucose to be burned as fuel! (The process just takes a while, which is why eating foods high in protein doesn’t raise your blood sugar.) 

However, over the history of evolution, humans have needed to survive periods of food scarcity and even famine. Our bodies have evolved a sophisticated way to create fuel in the absence of glucose. When glucose is scarce, we burn fat instead. This process is called ketosis.

When we burn fat, we turn it into “ketones” in the liver, which are burned to create energy. Though it takes a few days to make the transition from burning glucose to ketones, it turns out that burning ketones is highly efficient and even beneficial for our bodies. Ketosis has been shown to lessen inflammation, improve endurance, and protect brain tissue. It also starves pathogens by eliminating sugars.

Throughout human history, humans have entered ketosis in times of food scarcity — burning fat stored on our bodies (in other words, losing weight). In modern times, however, you can choose to enter ketosis by managing your diet.

In the ketogenic diet, or keto, you eliminate most sources of glucose, and may even limit protein intake in favor of high quality fats. Keto severely limits carbohydrates of any sort. But you don’t have to starve, or even lose weight if you don’t need to. You just feed your body mostly fat and some protein, forcing it to create and burn ketones.

The keto diet typically includes a lot of nuts, seeds, high fat meat (think bacon or salmon), avocados, and coconut fat. Cheese is ketogenic, since the idea is lowering inflammation by burning ketones, not by eliminating allergic reactions or sensitivities. Leafy greens are fine, as they contain barely any carbohydrates, but you won’t be filling your plate with tubers, grains or fruits. 

You can buy gadgets to test your ketone levels. Even creating small levels of ketones can be beneficial for the body. And if dairy causes reactions for you, of course you can substitute other foods instead.

4. Vegan Diet

The vegan diet, as most people already know, involves eliminating all animal foods: No dairy, no eggs, no meat or fish – some vegans even avoid honey. Vegan diets can be extremely unhealthy – theoretically, you could survive on Wonder Bread and Fritos as a vegan. (But you wouldn’t get far in terms of  healing Lyme disease.)

People with Lyme who choose a vegan diet usually eat a ton of vegetables, fruits, squashes, and tubers. Some tolerate beans and grains – which is a great way to get enough quality protein while avoiding animal foods.

The vegan diet is very anti-inflammatory. Keep in mind that eating tons of vegetables and fruits, gluten-free grains and beans is alkaline forming – lowering the acidity necessary to digest animal protein.

Let your body be your guide

When deciding how to go forward with switching up your diet, be gentle with yourself. Anyone who tells you there is a one-size-fits-all approach is probably trying to sell you something. The truth is we are all a little bit different. You can tweak any diet to suit your own unique needs. For instance: Eat mostly vegan, but add in fish here and there. Go paleo, but level up your fat intake so that you stay in mild ketosis. Try AIP, but cut out fruit as well if it bothers your system, and add in nightshades if you do well with them. You never need to follow a rulebook, or feel guilty if what works well for you is not the current internet trend. 

Experiment. Your body will tell you what works. And, thank the gods that cacao (the basis of chocolate) is allowed in all four of the above diets, and is a nutrient-dense food. 


Shona Curley lives and works in San Francisco. She is co-owner of the studio Hasti Pilates, and creator of the website www.redkitemeditations.com. Shona teaches meditation, bodywork and movement practices for healing Lyme disease, chronic illness and pain.

Renew Your Sense of Hope And Optimism This Year With These 4 Tips

As we head into the new year, many of us will begin to reassess our lives. We’ll take inventory of what worked last year (for Lyme disease treatment and our personal lives), what we hope to improve upon this year, and construct a well-intentioned plan to move forward in a fresh, new direction. Not surprisingly, several of us will still resolved to achieve more, get in better shape, eat a healthier diet, be a better mother, father, partner, spouse, friend, etc. However, with Lyme disease symptoms and various overlapping conditions in the mix, often, our best-laid plans come to an abrupt halt. Many of us simply don’t have the strength and stamina to exert ourselves so intensely (myself included), which tends to leave us feeling frustrated and disheartened.

If this describes you, go easy on yourself. Thankfully, there’s plenty of time left to challenge the idea that you must muster up the strength to push more and try harder to have a better year. Instead, make 2020 exceptional by honoring your body exactly where it’s at, and accepting your current capabilities. By embracing a healthier mindset, may you feel uplifted and encouraged as you continue to heal for Lyme disease. Here are four tips to renew your sense of hope and optimism this year:

Recovery From Lyme Disease in the New Year

1. Remember that you are worth the struggle.

First, let me start off by saying that the trials you’ve endured, the tears you’ve shed over this illness, the obstacles you fought so hard to overcome are not meaningless. Likewise, you battle a set of invisible symptoms on a daily basis that most will never see. Your unwavering determination and strength inspire others to forge ahead as they work to towards recovery from Lyme disease. Your vast knowledge helps others. Others see you as more than your illness, and your perseverance motivates them. The road to recovery is long, but please hold onto this certainty for 2020: You are worth all of the effort — all of the struggle — it takes to reclaim your health and life. Always remember, you are a person of great value to the world.

2. Find something therapeutic for yourself.

Raise your hand if you feel completely overwhelmed now and then by the usual, chronic illness rigmarole! Okay, maybe all the time (my hand shot up too). As a former occupational therapist, my training taught me that a productive treatment session possesses healing, restorative, and therapeutic qualities for the patient. From a personal perspective, I learned a valuable lesson about a year into my Lyme treatment when I realized nothing felt therapeutic. My muscles held an abundance of tension, and my mind was regularly fearful. From herbs and supplements to medications, it didn’t matter what I put into my struggling body. I always reacted harshly to all of it.

Out of desperation, a quick Yelp search led me to an acupuncturist named Tina, who had treated at least one patient with Lyme disease and others with chronic pain. She kindly agreed to see me that very day. I was so weak at this particular point in my illness that my husband carried me to her office and laid me down on the table. On our first visit, Tina evaluated me, and we agreed on a gentle treatment plan utilizing massage and acupuncture to relax my nervous system. Upon completion of our first session, I felt different, lighter. It was as if years of tension had melted away. This experience underscored the importance of utilizing various therapeutic modalities to help improve my health. It was a piece of the puzzle that had been missing.

Perhaps a detox bath, a massage, reading a good book, or prayer is therapeutic for you. Whatever it is, do it often. Don’t neglect to include these beneficial elements into your protocol. Your body, mind, and spirit will thank you.

3. Allow yourself to feel happiness.

Most of us believe our happiness is dependent upon our circumstances — we’ll feel happy if we are well, if we have enough money, if we were around nicer people — if, if, if.

I hear these “if” statements often. We place our delight and joy in future pursuits that may or may not ever happen, and we deny ourselves the ability to experience happiness now. In 2020, let’s try a new approach. Release yourself from the thought that you can’t be happy until your life looks a certain way. Instead, notice the little gifts and sweet surprises that each day brings. While it’s true this won’t end your hardships, it will boost your spirit as you walk the long road of living with Lyme disease.

4. Stop measuring your progress by how others are doing

There is no easy answer as to why some people get well while many of us continue to be ill. What I can tell you is, your journey through this illness is uniquely yours. You will repeatedly hear about someone who got well seeing a specific doctor, using a particular treatment, trying a bold therapy, or taking a special supplement. While it’s good to stay informed of your options, it’s important to remember there is no surefire way to recover. No matter what treatment option you choose to pursue, your body tolerates what it can, and it heals at its own rate. Healing will always be unique to you and your body and different from anyone else’s. So, please stop measuring your progress by how others are doing. I mean it. Stop it. This type of comparison is instantly depressing and will immediately kill your sense of hope and optimism. Rather, focus on how far you’ve already come, because, believe it or not, you’ve already made it a heck of a long way.

I would love to hear what things you are doing to remain hopeful and optimistic in the new year. Please feel free to leave a comment.

This article was first published on ProHealth.com on January 20, 2016 and was updated on December 26, 2019.


ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is an occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVD, A New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio.