Improve Adrenal Fatigue with 6 Easy Lifestyle Changes

Adrenal fatigue results from low functioning adrenal glands – small hormone-producing glands located on the top of your kidneys. While the glands themselves aren’t diseased, they’re underactive, resulting in a whole host of symptoms. Lyme disease patients aren’t just “tired” due to adrenal fatigue, they’re devoid of energy, “crash” during times of stress, experience low blood pressure, feel dizzy upon standing, feel achy, experience hypoglycemic episodes, and more. Some experts believe adrenal fatigue, also known as adrenal insufficiency, is caused by a disruption in the brain’s hypothalamus, the region of your brain that signals your adrenal glands to produce hormones. At times, addressing adrenal fatigue in patients with chronic Lyme disease symptoms can be troublesome and confusing.

For starters, many of the herbs recommended for adrenal fatigue can be difficult for people with chemical sensitivities. Some herbs like adaptogens, adrenal extracts, and glandulars can be too stimulating. In this article, I discuss lifestyle changes to support the adrenal glands when your body can’t handle some of the more commonly recommended supplements.

Adrenal Fatigue and Lyme Disease

1) Improve Your Sleep Schedule- You need it. You crave it. But sometimes you just can’t get sleep no matter what you do, and your sleep habits play a large part in reducing adrenal fatigue symptoms. To assist your body in the healing process, plan to eliminate the use of TVs and electronic devices by around 8:00 PM. Though this may be a difficult pattern to break, the reduction in stimulating light will encourage your body to produce the sleep-inducing hormone called melatonin. Try your best to be in bed between 10:30 PM and 11:00 PM, which reduces the likelihood that you’ll be kept awake by a “second wind” adrenaline surge. Whenever possible, aim to sleep in until 9:00 AM. Adrenal fatigue expert, Dr. James Wilson, says this allows your morning cortisol levels to rise gently and without interruption. Seek to make this new schedule a routine, so that your body’s natural sleep-awake cycle gets reinforced.

2) Eat a light snack before bed- A small snack before bed, like a handful of nuts or a spoonful of coconut oil, can help you fall asleep. It balances your blood sugar and lessens the chance for a boost in your nighttime cortisol –soothing the brain and the body for a better night’s rest.

3) Rejuvenate your adrenal glands with food– Bone broth is nutrient-dense fuel for the adrenal glands. Packed with collagen, gelatin, and amino acids, bone broths contain an array of nutritious components that are easily digestible. An adrenal fatigue diet should include healing foods that are low in sugar, high in fiber, and contain beneficial fats to feed the adrenal glands including: cruciferous vegetables, coconut oil, avocados, olives, wild caught salmon, chicken, turkey, nuts, seeds, and seaweed. These healthy foods work to replenish your body from the inside out.

4) Increase your intake of sea salt–  Many people with adrenal fatigue have electrolyte imbalances and low blood pressure, which contribute to a worsening of symptoms. “A relatively easy tactic to increase blood pressure is to simply take in more salt and water. Salting food liberally as well as taking salt-water drinks can be very helpful. Sea salt is better than table salt because it contains trace minerals. Drinking more water will increase blood volume. This helps those that have chronic hypotension, chronic orthostatic intolerance, neurocardiogenic syncope, and POTS, ” reports Michael Lam, MD, an adrenal fatigue consultant in Loma Linda, California.

To help replace both sodium and fluid volume, try ¼ to 1 tsp of sea salt dissolved in a glass of water first thing in the morning. A word of caution: if you have high blood pressure, please discuss this with your doctor before increasing your salt intake.

5) Avoid harsh detoxing- Simply put, severe detoxing can further disrupt an already delicate fluid balance in the body forcing the adrenal glands to work harder. Instead of aggressive detoxification strategies, try something gentler like dry skin brushing, an Epsom salts foot bath or a hot-cold shower.

6) Begin restorative exercise- As Lyme patients, we know exercise is critical to our healing. But if you expend all your energy on trying to push yourself through an exercise routine, you’ll worsen adrenal fatigue and increase the amount of time it takes for you to recover. Exercise is essential for rebuilding your body, but it’s the right kind of exercise that matters most. You want to conserve as much energy as possible, so your goal for exercising is to restore the body; do exercises that release tension, improve movement, ease pain, increase oxygen throughout your body, and strengthen your core. Some examples of these types of activities include gentle walking, restorative yoga or Pilates, and tai chi. When your body has rebuilt some energy reserves, and you’re not constantly battling with fatigue, you can progress to more challenging workouts.

For some Lyme patients, the rebuilding process may take weeks. For others, this process could take months or even years. Regardless of the length of time it takes you to bring your adrenals into a state of balance, try to listen to your body and not measure your progress by what others are doing. Your path to recovery will be uniquely yours in all aspects.

This article was first published on ProHealth.com on November 26, 2016 and was updated on June 2, 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.

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The Lyme Disease and Autoimmune Encephalitis Connection

In March, I had the privilege of interviewing  Dr. Elena Frid, a dynamic pediatric and adult autoimmune and Lyme disease specialist in New York City. You may recognize Dr. Frid from her bold, high fashion social media posts; she’s on an attention-grabbing mission to bring encouragement to the Lyme community and educate healthcare practitioners about this illness.

Frid began her neurology practice on the Upper East Side of Manhattan. Within a couple of months, she began to see medically complex patients with no clear-cut diagnoses despite seeing multiple specialists at the country’s top healthcare institutions. “Well, what’s going on with [these patients]?” she asked herself.

Frid’s entry into treating Lyme disease is mainly due to the prompting of her patients. They began bringing her articles about the manifestations of Lyme disease and various autoimmune disorders, and she took notice. Then, one patient encouraged her to attend an ILADS (International Lyme And Associated Diseases Society) conference for further education and training – which she did four years ago — and began treating Lyme patients shortly after that.

A protégé of the renowned Lyme expert, Dr. Charles Ray Jones, Frid has become an outspoken advocate for Lyme patients, and she hopes to create a unified voice and bring guidance to practitioners in the community. Here, she shares her insights on Lyme disease treatment, the cutting-edge concept of autoimmune encephalitis, and reviving the idea that we can heal from this illness.

The Lyme Disease and Autoimmune Encephalitis Connection

Jenny Buttaccio (JB): Can you describe the types of patients you see in your practice?

Dr. Elena Frid (EF): Typically, the type of patients we see are young, healthy patients who all of a sudden start getting sick and can’t get better. They start accumulating diagnoses, and these diagnoses should get better with one or two treatment options or medications. But nothing seems to help them. We also see patients who have had Lyme disease for many years and been treated by other physicians in the Lyme community – they’re not getting better or have plateaued. Additionally, we see patients who have been examined by multiple physicians, and they still don’t have a diagnosis.

Symptom wise, we see a lot of cognitive issues and physical symptoms, such as difficulty walking and dizziness, which impedes day-to-day function. We also see a lot of intractable – meaning nothing is helping them — neuropsychiatric symptoms like depression or psychosis. In children, we see OCD (obsessive compulsive disorder), tics, or regressed behavior that is not getting better with mainstream treatments.

JB: As a neurologist, what perspective can you shed on Lyme disease that might be different from other doctors?

EF: Lyme is a multisystemic illness, and, in my experience, it primarily affects people neurologically. That’s where a neurologist comes into play with this disorder. A lot of what’s happening with the patient is an autoimmune phenomenon. They have inflammation of their peripheral nerves; they have inflammation of the brain that’s known as “autoimmune encephalitis.”

This subspecialty in neurology is very cutting-edge. It was first described in Japan about ten to 15 years ago when I was in training. Initially, we thought this autoimmune phenomenon occurred mainly in patients that had tumors or certain types of cancers. But, over the years, we realized that only about 40 percent of these patients have some malignancy or tumor. And the rest, 60 percent, we don’t know what’s wrong or why this is happening to them.

What I’ve been noticing in my practice is that these patients have an infection-induced phenomenon. A lot of neurologists and autoimmune neurologists – even the CDC – talk about this infectious process. Why this is a problem is because if you don’t treat the infections in the patient – which is ultimately the driving force in this condition – you will be chasing your tail. Therefore, treating these patients, both for their infectious etiology and the autoimmune phenomenon, has to occur simultaneously. Lyme patients are seriously complicated patients!

JB: Thank you for your interesting explanation on autoimmune encephalitis. When working with complex patients, what advice do you give to them to stay the course of treatment?

EF: What’s the advice that I give to patients? Stay motivated. A lot of what I do for my patients is really therapy to stay with a treatment plan. Patients must realize that one needs to identify every infection that’s going on with them and every disease process that’s happening. If there’s an autoimmune phenomenon, it needs to be recognized, and it has to be treated all at the same time. I’m not a proponent of treating each coinfection (Babesia, Bartonella, etc.) one at a time. In my opinion, they have to be identified and treated all at the same time. For children, as long as I have a good rapport with the parents, and I explain my end result to them, I think it’s a little easier for them to remain motivated. With adults, some of them need help to understand that they may feel worse before they get better.

Obviously, the earlier you treat [Lyme disease], the better the chances are of recovery. I tell my patients they will need to be treated for one to three years. However, there are anomalies where it will only take a couple of months for people to feel well or longer than three years. Certainly, not everyone falls into that time frame.

JB: In what ways are you educating the medical community about Lyme disease?

EF: Part of what I’ve done this year is go back to my alma mater (Robert Wood Johnson Medical School) and tell [students], “You don’t all need to go into treating Lyme disease, but there’s a huge problem, and you’re all being taught wrong.”

At least, tell them there is a controversy and let students dive into that on their own and make up their own minds!

JB: Are there any other remarks or comments you’d like to say about Lyme patients?

EF: If a patient has a diagnosis of chronic fatigue syndrome, fibromyalgia, neurologic issues, or potentially even some learning disabilities, these may actually be symptoms of Lyme disease because it is a multisystemic illness. Keep digging and explore other possibilities. If you feel something is wrong, something is wrong.

Also, it’s very difficult to see the light at the end of the tunnel, especially if you have had this illness for a long time. What I see on social media or in my office is that people are losing hope. Know the healing process does take time, but there is hope for those battling chronic Lyme disease.

Editor’s Note: If you’re searching for a healthcare provider, please contact ILADS to obtain a list of medical professionals in your area.  

This article was first published on ProHealth.com on June 20, 2017 and was updated on May 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.

The Top 5 Natural Pain Relievers Worth Trying

Walk the aisle in a drug store, and you’ll encounter plenty of pain-relieving drugs like NSAIDs (non-steroidal anti-inflammatory drugs), acetaminophen, and ibuprofen. The store makes it easy for you to find.

Yet, not everyone wants to, or can, take drugs. Some people may not be comfortable with their side effects. Others may prefer natural alternatives to mitigate pain. Or, the store might just be out of stock. One way or another, when you have muscle aches, soreness, and pain, you need some helpful prospects.

Natural pain-relieving solutions might be the help you’re looking for. The challenge? Finding the best ones so that you can choose the right one for you.

This article brings together five of the top natural pain-relievers available, along with the research behind them and how to get the most from each one.

Natural Pain Relievers

1. Curcumin

Curcumin is the potent compound in turmeric, a common and popular spice well-known for its place in Indian cuisine and Ayurvedic medicine. One of its ancient uses has been for the relief of swelling in joints, muscle pains, and sprains.

Perhaps one of the most widely researched natural substances, numerous studies report it helps control levels of inflammatory cytokines, including interleukin-8 (IL-8) and tumor necrosis factor alpha (TNF-α). Cytokines are substances released by immune cells, each with a specific purpose. Injury and illness prompt immune cells to release cytokines that cause inflammation, which can cause the aches and pains you feel after a workout or when sick.

Additional research suggests curcumin helps regulate immune system response to support healing, even in cases of severe infection.

You can find fresh turmeric root and dried ground turmeric in most grocery stores. Cooking with turmeric can add flavor and color to your dishes, however, for maximum effect, you will want to use a curcumin supplement. Curcumin naturally breaks down quickly during digestion. Curcumin supplements featuring solid lipid curcumin particles have shown the greatest bioavailability, according to an article published in Nutrients.

2. CBD Oil

Medical marijuana may have gotten a lot of attention, but CBD from hemp has stolen the spotlight. The pain-relieving power of both comes from the effect of THC and CBD on our endocannabinoid system. THC brings relief from pain, with its well-known side effect of feeling “high,” but CBD brings relief without the high. 

Perhaps a little ironically, it was research into THC that led to the discovery of our endocannabinoid system. Researchers have discovered this system regulates many daily functions such as appetite, immune response, and pain. Our body produces its own natural cannabinoids, which are exactly how, and maybe why, CBD works so well.

Unlike THC, which binds directly to cell receptors, CBD moderates the activity of an enzyme (FAAH) responsible for breaking down your body’s natural cannabinoids. By slowing this process, your body remains better able to regulate inflammation and how you feel pain.

Many people swear by CBD for pain relief. Recent studies support these claims, finding CBD lowers inflammation, eases aches and pains in joints, and improves overall quality of life, even replacing opioids in patients struggling with constant pain.

CBD oil can be taken in a variety of ways: as a capsule, delivered via dropper under the tongue (sublingually), in CBD edible gummies, mixed with water or a drink, and rubbed on your skin.

3. Magnesium

Magnesium may be one of the most overlooked options for natural pain relievers. This simple mineral plays a vital role in more than 300 metabolic functions, relaxes muscles, and regulates nerve conduction, a key pathway of pain. In recent years, studies have revealed magnesium plays an important role in how we experience and feel pain. Low magnesium levels correspond to increased feelings of pain. But many people may be deficient in this critical mineral. 

Diets high in processed foods and soda, medications, and other factors deplete the body of magnesium. Fortunately, simple lifestyle changes can increase our magnesium intake to ensure you get enough. Magnesium occurs abundantly in grains, fresh fruits, and vegetables, especially almonds, spinach, peanuts, black beans, oatmeal, and bananas.

Also, you can take magnesium supplements, although you want to follow the instructions closely to ensure you don’t overdo it. (The RDA for men 31+ is around 400 mg daily. For women, it’s 320 mg.) As a supplement, magnesium comes in different natural forms like:

  • Magnesium citrate, which is highly bioavailable, comes from citric acid and is often recommended by healthcare professionals. 
  • Magnesium glycinate, combining magnesium and the amino acid glycine, it is also highly bioavailable. 
  • Magnesium orotate, most often used by athletes and competitors as a natural performance enhancer.
  • Magnesium L-threonate, with its positive benefits for memory and cognitive health.

4. Boswellia

Also known as Indian frankincense, Boswellia is a powerful anti-inflammatory agent and  has long been used in Ayurvedic medicine as a natural remedy for a wide range of ailments including:

  • Fevers
  • Coughs
  • Respiratory illnesses
  • Skin wounds
  • Sore throats
  • Joint and muscle pain
  • Menstrual pain

Additionally, modern studies find Boswellia a reliable reliever of pain, swelling, and inflammation. It inhibits leukotrienes, molecules linked to increased inflammation in the body. Boswellia is also a rich source of phytochemicals, antioxidants, and other plant compounds that neutralize free radicals and other toxins that can make inflammation worse.

You can find Boswellia supplements in capsule form, either on its own or combined with other herbs. There are also topical applications you can use to address skin conditions and ease the soreness in muscles and achy joints.

5. Omega-3 Fish Oil

Omega-3 fatty acids have gotten a lot of attention for their support of heart and brain health. Now they are getting attention for their powerful anti-inflammatory properties.

One study reported omega-3 fish oils worked as well as ibuprofen for relief of achy joints. Together with curcumin, they show promise relieving migraine pain as well.

Omega-3 fish oil supplements have been shown to boost levels of special anti-inflammatory molecules your body naturally produces called specialized pro-resolving mediators (SPMs), according to a study in Circulation Research. These molecules help to reduce inflammation throughout the body, playing a key role in pain management.

By controlling the production of inflammatory molecules, omega-3s support and balance your immune response and the inflammation that goes along with it. The omega-3 fatty acids supply the building blocks, and your body does the rest.

The only way to get omega-3 fatty acids is through your diet. Though your body makes a lot of fatty acids, it doesn’t produce omega-6 and omega-3 fatty acids. These you must get from the food you eat. (It is worth noting that omega-6 fatty acids support production of inflammatory molecules.) 

Fish and other marine life offer the best sources for omega-3 fatty acids. You can get some from other land-based sources like walnuts, chia seeds, and flaxseeds, but fish oil remains the top source. Fish oil supplements are also one of the easiest and most affordable ways to add omega-3s to your diet. Typically, you can get Omega-3 fish oil supplements in tablet form, although liquid forms are available too.

Summary

Pain, regardless of its cause, negatively impacts your quality of life. It’s no surprise the pain management industry offers so many different options in the form of over-the-counter (OTC) NSAIDs, acetaminophen, ibuprofen, and even opioids. Perhaps due to their side effects and potential risks, it’s also no surprise many people are looking for non-pharmaceutical alternatives.

The five natural pain-relievers presented here offer different approaches to address pain. The research shows that they can take the edge off the pain and bring some degree of comfort.

As with any therapy, you have to find the right one or combination for your own unique situation. If you have any questions or concerns about whether taking these or any supplements are safe, you should always consult with your doctor.


Peter Rufa writes for a wide range of clients but specializes in health. He has written for doctors, supplement providers, healthcare, medical, and fitness organizations and businesses throughout the United States.

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7 Supplements to Support Lyme Treatment You Need to Know About

Throughout the course of your Lyme disease treatment, you’ve probably heard about or tried more supplements than you can count. While it’s easy to feel like you’re potentially missing out on something that helps you heal faster, chances are, you’ve spent a lot of money on things that haven’t worked for you. Using my personal experience, along with the input from the members of my local Lyme support group, I’ve compiled a list of seven unique supplements that we have found to be helpful in our healing journeys. Some of these supplements might be unfamiliar to you, so (as always) please consult with your doctor before adding any of these into your protocol.

Supplement to Support Lyme Disease Treatment

1) Boswellia Extract- This extract is derived from the Boswellia serrata tree (also known as Frankincense), which grows in the dry, mountain areas of India, Northern Africa, and the Middle East. Boswellia is a powerful pain reliever that mediates several pro-inflammatory chemicals in the body and has been used in Ayurvedic medicine for centuries. In addition to its ability to reduce pain, chronic fatigue syndrome expert, Jacob Teitelbaum, M.D., suggests this herb may also reduce headaches due to its capacity to open constricting blood vessels. Unlike other pain relievers often give to Lyme patients, Boswellia doesn’t appear to cause stomach ulcers or gastrointestinal upset. Typically, you can purchase it in tablet, capsule or powder form. To ensure maximum potency, look for products that contain at least 65% Boswellic acids.

2) Pau d’Arco- This is an antifungal herb and may be beneficial to those dealing with yeast-related issues as a result of ongoing antibiotic treatment. Pau d’Arco is available as a tea or a capsule. However, the tea is thought to be more effective, and, when used in conjunction with other antifungals, it can be useful against Candida. Additionally, Pau d’Arco may possess some antimicrobial properties against Bartonella.

3) Boluoke Lumbrokinase- Boluoke is a purified mix of enzymes from earthworms. (Yes! You read that correctly.) This supplement seems to dissolve fibrin–a substance that shields bacteria in the body, allowing the pathogens to remain undetected by the immune system. It’s also an anti-coagulant, helping to decrease the thickness and stickiness of blood, and it breaks down biofilms. Boluoke is contraindicated in people taking blood thinners and in conditions where there may be an increased risk of bleeding.

4) Teasel Root- In her book, The Lyme Diet, Naturopathic doctor Nicola McFadzean notes that teasel root may be a good starting point for Lyme treatment because it’s gentler than some other herbal protocols and produces minimal Herxheimer reactions. “Teasel root is another herb with anti-bacterial properties with benefits also in managing inflammation and relieving pain,” she states.

5) Black Currant Oil- This oil is a natural source of gamma-linolenic acid (GLA), a strong anti-inflammatory agent. The renowned integrative medicine physician, Andrew Weil, M.D., states that black currant oil stimulates the healthy growth of hair, skin, and nails. In his practice, he uses it for skin conditions, arthritis, autoimmune disorders, and premenstrual syndrome. Weil cautions that the supplement may need to be taken six to eight weeks before any changes are seen. Furthermore, black currant oil may help to support the adrenal glands in Lyme patients who are suffering from adrenal fatigue. Potentially, the oil works by stimulating the production of the adrenal cortex hormones. However, more research is needed in this area to confirm the benefits of black currant oil for the adrenal glands.

6) Lithium Orotate- Lyme-literate medical doctor Marty Ross, M.D., says that lithium orotate is one of his preferred supplements, and he recommends a dose in the 5 mg range to his patients. It should be noted that lithium orotate is a nutritional supplement and isn’t the same prescription form that’s used in the treatment of bipolar disorder (That’s lithium carbonate). In low doses, lithium orotate offers the brain neuroprotection from toxins; improves thinking and mood, decreases anxiety, and lessens irritability. Please consult with your doctor for proper dosing instructions.

7) Alpha-Lipoic Acid (ALA)- ALA is produced naturally by the body, but its production can decrease with age and illness. It’s an effective antioxidant that helps the cells of the body to metabolize energy. Plus, it potentiates other crucial antioxidants like vitamins C, E, and glutathione. ALA may contribute to improving fatigue and symptoms of numbness and tingling in those with Lyme disease. It’s also shown to be helpful for people with diabetic neuropathy and to maintain brain function in the aging population. Make sure to speak to your doctor before taking this supplement. In some people, it’s been known to lower blood sugar.

Although this isn’t a complete list, these are a few of the favorite supplements many Lyme patients have found to be useful tools in their healing protocols. Of course, every doctor has specific recommendations that they want each of their patients to follow, so be sure to consult with your practitioner for more individualized recommendations.

What are the supplements you’ve found essential to your recovery? We’d love to hear from you, so please feel free to leave a comment.

This article was first published on ProHealth.com on January 30, 2017 and was updated on May 5, 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.

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How to Manage an Intimate Life with Chronic Pain and Fatigue

Sexual health is linked to overall health. In fact, sexual activity improves well-being thanks to hormones like oxytocin, and it can even improve sleep, suggests a 2007 report by Planned Parenthood. Furthermore, hormones released during orgasm can help relieve chronic pain symptoms thanks to a rise in pain threshold due to a rush of endorphins and corticosteroids. 

Unfortunately, many Lyme sufferers struggle with a plethora of symptoms that can make maintaining a sex life difficult. People with Lyme disease experience widespread muscle and joint pain that is often unpredictable. They may also suffer from fatigue, mental fog, and other neurological symptoms. 

To compound the problem, many people who experience sexual dysfunction are reluctant to seek help due to embarrassment, or frustration with the lack of medical response to their condition. A 2008 study in Pain Research and Management found that 73% of women with chronic pain report sexual difficulties. Up to 40% of people reported that Lyme disease symptoms caused them to eliminate sexual activity entirely. 

People with chronic pain associated with Lyme disease differ in how they react to the pain: Women tend to move through the pain throughout the day, which can exacerbate symptoms. Men experience significant reductions in activity level and depressed mood. This means women may push through painful symptoms throughout the day leaving them too drained for sexual activity. Men, on the other hand, may avoid sexual activity because of depression or fear of pain. During Lyme disease treatment, it’s important for healthcare workers to take these differences into account.  

Since maintaining a sex life is improtant for mental health and overall wellbeing, it’s important for people with Lyme disease to find ways to maintain an intimate life despite their symptoms. The potential for pain relief is an added bonus. There are many ways for people struggling with sexual health to get their groove back. 

Intimacy, Chronic Pain, and Lyme Disease

1. Talk to Your Doctor.

Medical practitioners can help patients navigate sexual problems caused by their symptoms — an approach that treats both the physical and psychological implications of sexual dysfunction is most effective. A doctor can help people determine if there are underlying hormonal issues that are making sexual dysfunction worse. They may also be able to provide referrals to a sex therapist. It is important to rule out any underlying hormonal issues that can be caused by Lyme disease and even the use of long term pain medications. 

2. Find a Sex Therapist.

Sex Therapy is a field that is growing rapidly as research indicates the importance of sexual wellness to overall health. Sex therapists aim to reduce the stigma of talking about sexuality, improve patient sexual satisfaction, and learn how to make a sexual activity work for them.  

Women with chronic pelvic pain, fear of pain with intercourse is often what keeps them from enjoying sex. Men with chronic pain may fear their performance is lacking and be afraid to try. Opioids, often prescribed to treat pain symptoms, can alter hormone levels causing sexual dysfunction. In circumstances like these, the therapist’s job is to help with the reduction of fears, encourage relaxation techniques, as well as assist couples with conversations about sexuality. 

The American Association of Sexuality Educators, Counselors, and Therapists (AASECT) provides a referral tool for finding someone in your area. Many therapists offer video or phone call services for those who have trouble leaving their homes. 

3. Communicate with Your Partner.

People with Lyme disease whose sexual functioning has been impacted must learn to communicate with their partner, though it’s not always an easy topic to tackle. When discussing sex with a partner, it’s important to begin with the goal of creating a satisfying sexual life for both people. Keep in mind that the partner of someone with chronic pain may be mourning the loss of a sexual relationship and also afraid of hurting their loved one. Returning to sexual activity may require a frank discussion about changing the definitions of sex within a relationship, at least temporarily. 

People with chronic pain need to learn to self-advocate when something is uncomfortable, or painful. Often, people with chronic pain find that as they practice and learn how to listen to their bodies they are able to enjoy a greater variety of sexual expression. 

4. Use Relaxation Techniques

Since Lyme disease causes neurological symptoms, including anxiety and depression, it’s vital for people approaching sexual activity to do so in a relaxed state. Lyme can also cause joint and muscle pain in the pelvic region that makes sexual activity painful. Conditions such as pelvic floor dysfunction, vaginismus, and interstitial cystitis can be difficult to work around, but that doesn’t mean people need to give up. 

Lyme patients may benefit from a hot bath to soothe sore muscles and joints, followed by a massage before beginning sexual activity. This may require people to plan time to prepare for sex in their lives, but the benefits of a satisfying sex life are worth it. 

5. Redefine sexual activity

For many people, especially heterosexual couples, sex is defined as a penetrative activity. For people with chronic pelvic pain, this presents a challenge. Changing the definition of sexual enjoyment can help people with chronic pain who wish to maintain a sex life. Cornell University Health describes a sensate model, focused on touch rather than penetration as the key to enjoying sexual activity. Focusing on the sensual touch that avoids genitals lessens the pressure people with chronic pain may feel to engage in penetrative sex. 

Engaging in reciprocal sensual touching with a partner can help people reconnect and be open to communicating about other activities. For people who have been celibate due to their symptoms, this is a terrific starting place. Sensual touching is also a wonderful solo activity that can help patients reconnect with their sexual selves and be open to other experiences. The goal of this touching is not orgasm, but physical pleasure without an agenda. 

6. Experiment with Positions.

A sex therapist can assist an individual or a couple with finding positions that don’t exacerbate pain symptoms. In the Pain Research and Management study, participants received significant coaching about positions, and even use of pillows and wedges to relieve pain. Often, positions that don’t rely on joints to support weight are best for those with knee, wrist, and hip pain. 

For those with chronic fatigue, a position that allows them to lay flat or on their sides may allow them to relax enough to enjoy a sexual experience. Also, consider timing when it comes to sex: Some find it easier to muster the energy for sex early in the day before fatigue sets in. 

7. Focus on Lubrication

Lyme disease can cause abnormal fluctuations in hormones, resulting in symptoms that mimic the beginning of menopause. For women with these symptoms, sexual excitement doesn’t correlate with vaginal lubrication. This can make penetrative sex, or even touching, uncomfortable. The use of a lubricant can increase sexual enjoyment for both partners. 

If using condoms, it’s important to use a water-based lubricant so the integrity of the condom isn’t compromised. Otherwise, options containing coconut oil or silicon provide long-lasting results. 

Taking an active role in sexual therapy combined with communication, a focus on pleasure, a willingness to experiment with various positions, and appropriate relaxation techniques can help people with chronic Lyme disease symptoms experience a return of sexual satisfaction despite persistent symptoms


Maria Chapman is a literacy specialist turned freelance writer. Maria specializes in writing about parenting, mental health, education, relationships, and productivity. She uses her 13 years of experience in urban education,  her work as an instructional coach, parenting five children, thriving with chronic illness to write engaging, relatable content. See Maria’s website or her Linktree for more of her work.

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Ehlers-Danlos Syndrome: Is it as Rare as You Think?

Ehlers-Danlos syndrome (EDS) is a collection of genetic (inherited) connective tissue disorders that have been identified as belonging to 13 distinctive subtypes, commonly referred to simply as “types,” as stated by The Ehlers-Danlos Society

Characteristics of EDS

All these types have certain characteristics in common, such as: 

  • Joint laxity/hypermobility  
  • Joint subluxations and dislocations
  • Skin softness and fragility 
  • Chronic and debilitating pain
  • Organ dysfunction
  • Organ prolapse
  • Weakness and dysfunction in other systems and tissues of the body

EDS and Families

I am personally most familiar with Hypermobility type (hEDS), which I have, along with several other members of my family. Although I have lived with the symptoms my whole life, I wasn’t diagnosed until 2015. Though EDS can be inherited in an autosomal-dominant or autosomal-recessive pattern, hEDS tends to be an autosomal-dominant genetic mutation, meaning that if one parent has it, each child has a 50% chance of inheriting the disorder, too.

In regards to the genetic nature of the syndrome, both my children have it. Out of my family of seven siblings, one sister has also been diagnosed with hEDS, and two others share our symptoms — our mother also had all the major symptoms but was never diagnosed. 

Types of EDS, such as Vascular EDS (vEDS) and Classical type (cEDS), are of the most concern in the medical community because they can have serious or fatal outcomes. While hEDS is considered benign by the medical profession, it can be extremely painful, and go hand in hand with comorbidities like depression and suicide risk, a tendency toward cancer, neurological issues, POTS (postural orthostatic tachycardia syndrome), and autoimmune disorders — all of which can have life-altering consequences. EDS can also overlap with chronic illnesses like ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, and Lyme disease.  

EDS and the Medical Community

Aside from specialists, the medical community’s knowledge in this area is sparse. There are relatively few doctors who are educated beyond a cursory medical school description of all the types of EDS as a unit, usually focusing on vascular or classical, demonstrating textbook cases of an individual with stretchy skin or a hypermobile person contorted into a pose unattainable by the average person. This in no way explores the vast spectrum of disorder encompassed by EDS, nor does it prepare the average doctor to deal with the symptoms or accurately assess, evaluate, and refer patients. In part, this apparent medical disinterest may be due to the rarity of the condition, affecting less than 1% of the population. The Ehlers-Danlos Society puts the prevalence of EDS at about .04% or lower (1 in 2,500 to 1 in 5,000 people), which adds up to roughly 759 million people worldwide. But EDS activists assert that there are increasing diagnoses, and the low reported occurrence of EDS may be due to misdiagnosis. A 2019 study in The British Journal of Medicine examined the possibility of underreporting, and the results were striking: They discovered that one in every 500 medical cases were some form of EDS. 

Everyday Struggles of Those with EDS

The narrow understanding of this unusual condition does not begin to touch on the reality of life, limitations, and everyday struggles for those with EDS. Symptoms and comorbidities can vary widely between EDS patients of the same type, and even between siblings. EDS has been referred to by some of my specialists as a “spectrum” disorder, with individuals at one end of the spectrum experiencing only minor symptoms. In contrast, those on the other end can be completely disabled, in constant pain, and can’t maintain joint stability without the use of braces. Many are housebound, in wheelchairs, and some are bedridden. Some must be on feeding tubes because of non-functioning gastrointestinal systems and reduced gut motility due to conditions like gastroparesis. 

Furthermore, the general lack of knowledge about this disorder creates an atmosphere of social isolation: The average person has never heard of EDS. Those who have often assume that EDS sufferers are hypochondriacs, attention seekers, or, quite commonly, that the illness is “all in their heads.” From the laughable malapropism,”Ehrlers-Danlers,” to “Ed’s,” (as in Ed’s disease), and “E.D.” (the acronym for erectile dysfunction), rarely is it even pronounced correctly.

Sadly, I’ve even encountered these blunders when dealing with medical professionals, and the accompanying misconceptions about the illness are more distressing when found in those we turn to for help. We often experience trivializing of our condition, or a denial that there is anything inherently serious in a diagnosis of EDS. Some common minimizing statements include:

“You’re just flexible. That’s a good thing!”
“You look fine to me.”
“Your labs indicate that you’re perfectly healthy.”
“It can’t be that bad.”
“So, you have some aches and pains?”
“There’s no reason you can’t live a normal, healthy life.”
“So, the other day you couldn’t get out of bed, but today you can do it?”

Those of us with EDS, who sometimes call ourselves “EDS-ers” or “Zebras” (Zebra being our symbol or mascot), are forced to deal with these assumptions and stigmas along with our already limiting and distressing condition. 

Triggers

Though present on a genetic level throughout an individual’s life, EDS can be noticeable at a young age, or be asymptomatic for years until triggered by several factors. These can include: 

  • A trauma
  • A traumatic or serious injury (to which we are more prone, due to weak tissue structures)
  • A severe illness or surgery
  • A drastic change in hormones, such as puberty, pregnancy, childbirth, or menopause

To date, EDS is considered a progressive illness, with worsening periods of severe flare-ups to the point that the flare-up no longer goes away. On the flip side, however, it can also go through “remissions” of sorts, where symptoms diminish, and quality of life improves. These are usually hard-won through excellent symptom management, but will occasionally be spontaneous.

Who Develops EDS?

An equal number of men and women are estimated to have EDS, but males are less frequently diagnosed. Since high muscle tone helps mitigate many of the joint, pain, and instability symptoms of EDS, one theory is that the higher muscle mass of active males helps them remain asymptomatic longer. EDS “disproportionately affects women,” suggest a Harvard Health article. Though, under-reporting of asymptomatic males or those with milder symptoms could be the reason for this observation. EDS seems equally prevalent in all races and ethnicities.

Testing 

While there are genetic tests available for other forms of EDS, there is currently no DNA test for hEDS, because the gene causing this particular type has yet to be isolated. Therefore, hEDS is diagnosed through a physical exam conducted by a rheumatologist or a clinical geneticist (preferably). Family and medical history are considered, and patients are usually tested for physical characteristics and given a score according to the Beighton scale whereby joints are assessed for hypermobility, and points are assigned based on a nine-point scale. 

It’s important to note that each type of EDS has its own clinical criteria, and most currently have some form of genetic testing to help clarify results between subtypes and other conditions that may present similarly. For instance, EDS symptoms are akin to many symptoms of autoimmune disorders, which can make things complicated, especially since autoimmune diseases are frequent comorbidities.

The medical community can appear reluctant to diagnose and treat Ehlers-Danlos syndromes, except for vEDS and cEDS, for the obvious reason that they can be fatal, while types such as hEDS are relatively benign. This tendency, along with limited literature on the subject, leaves few options for the individual who has been diagnosed and has the weighty but nebulous responsibility of managing their health. 

Treatment Options

Because of the persistent, chronic pain and social limitations, a person with EDS often experiences depression, and it may be accompanied by fear, anxiety, or anger. Self-care is essential for those with EDS, and most benefit from access to counseling or some form of mental health services.

Regardless of the type, if you’re newly diagnosed with EDS, it’s crucial to establish a medical team and a plan of care. Because EDS can manifest symptoms in any of the body’s systems, it is essential to monitor any signs of dysfunction throughout the body and have a doctor who is willing to make an appropriate referral should the need arise.

The general recommendations for EDS patients are as follows:

1. Monitor heart function: You should have an echocardiogram (ECHO) to assess baseline heart function and an occasional one after that.  

2. Add a neurologist to the team: Most likely, you’ll need a neurologist on your team, especially if you’re exhibiting symptoms like migraines, nerve twitching, convulsions, or seizures. 

3. Consider a qualified physical therapist: In my experience, standard physical therapy (PT) can often do more harm than good. So if you’re interested in PT, look for one who’s open-minded, versatile, willing to learn about your case, and be flexible in their approach. You may also find a therapist who’s training is with EDS or similar disorders Therapists who have worked successfully with autoimmune patients may be able to understand the nature of EDS because of similar physical limitations and potential for flare-ups from overexertion. If these options aren’t available, water PT (sometimes called aquatic PT or water therapy), can be helpful, especially in severe cases where standing and weight-bearing is difficult or impossible.

4. Eat a healthy diet: Dietary changes are also beneficial because of food sensitivities (likely caused by a weak GI system), and because of the inflammatory nature of many common foods (sugar, processed foods, dairy, etc.). A medical dietician can be of help isolating problematic foods. An anti-inflammatory diet can also mitigate flare-ups and joint discomfort. Many EDS-ers report doing well on the Paleo diet. Others do better eating Vegan. Still, others find improvement with a Mediterranean diet. 

As with the diversity of symptoms and types of EDS, it is important to realize that there is never a “one-size fits all” approach to treatment. Each individual must tailor the management of their health to their own needs, hopefully with the help of an informed medical team. At present, research is ongoing and continually discovering more about this group of disorders. But the more information we make available, the more the quality of life and treatment will improve for the hundreds of millions who suffer from EDS symptoms worldwide. 

Recommended Resources:

Website: The Ehlers-Danlos Society– provides information on the newest research, as well as support links to topics of interest for those diagnosed with EDS, or those who think they may have EDS.

Book: Joint Hypermobility Handbook– provides information on the physical and medical management of EDS.  

 


Marlane Quade Cook is a semi-retired teacher of classical ballet, visual artist, and freelance writer. She lives with her husband and children in Northwest Montana where she runs a community ballet program for local children and youth. She also teaches safe and therapeutic ballet classes for adults, specializing in working with students who have physical limitations. Her writing and artwork is featured on her blog: Inky Unkindness, and you can also follow her Facebook Page: Marlane’s Inky Unkindness

 

References:

Continue reading “Ehlers-Danlos Syndrome: Is it as Rare as You Think?”

4 Ways Vitamin C Can Support People with Chronic Illness

As the novel coronavirus continues to sweep the globe, patients and doctors alike are wondering what we can do to prevent and treat the infection. People struggling already with chronic illnesses like Lyme disease, fibromyalgia, and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) are especially vulnerable and need ways to boost their immunity and support their health. Vitamin C supplements have been flying off the shelves — and taking it may be a good idea — both to help protect against a variety of viruses and to support general health. As humans are one of the few mammals who don’t produce Vitamin C endogenously (by ourselves), we must get it through food or supplements. Now is a good time to be sure you are getting enough. Let’s take a look at ways in which vitamin C may support people with chronic illnesses. 

1. Vitamin C May Help with Respiratory Infections

It seems like common folk wisdom that if you’re fighting a cold, you reach for Vitamin C, or drink some hot lemon water (also an excellent natural source of C). 

Dr. Mischa Grieder of San Francisco Preventive Medical Group treats many patients working to heal chronic illness. Many of us want to be sure we’re doing all we can to protect ourselves, especially with coronavirus circulating. Recently, Dr. Grieder held a webinar to educate his patients on the use of vitamin C to prevent respiratory infections and to limit the intensity of infections should you become sick. 

In the webinar, Dr. Grieder discusses his experience that patients experiencing acute respiratory infection may be able to absorb higher doses of vitamin C as compared to when they are healthy. In his practice, he has seen patients fighting infection absorb much higher doses of vitamin C orally while they were sick and then needing to decrease that amount once their infections resolved. This may be in part because the body uses more Vitamin C to combat inflammation when we’re fighting a virus. 

Dr. Grieder suggests different dosages of Vitamin C depending on whether you are healthy or fighting a respiratory infection. Be sure to consult your doctor to determine the dosage that’s right for you.

2. Vitamin C Reduces Free Radical Damage

One of the primary ways Vitamin C can support general health is by neutralizing free radicals. Free radicals, or reactive oxygen species, are a type of unstable molecule containing oxygen and an uneven number of electrons. The body generates free radicals in many normal, healthy processes. Mitochondria generate free radicals as they produce energy. Immune cells produce free radicals while fighting infection. 

Unfortunately, tissue damage can occur when there are too many free radicals for the body to neutralize effectively. This can occur in cases of severe respiratory illness. In cases of chronic illness, lasting inflammation can also be a problem, and may exacerbate symptoms. Antioxidants, whether from dietary sources or supplements, may help. Enter vitamin C. 

Vitamin C is an antioxidant. Antioxidants stabilize free radicals, or reactive oxygen species, by donating electrons. Once the free radicals have an even number of electrons, they become stable. This halts their damaging interactions with cells and tissue, lowering oxidative stress. People with chronic illness may be able to lessen symptoms of inflammation by making sure they are getting enough Vitamin C. Additionally, people fighting acute illness, such as a respiratory infection, may be able to lessen inflammatory symptoms by taking C as well.

3. Vitamin C Supports Immune Health

A 2013 study on the antiviral properties of vitamin C  looked at the effects of the influenza virus on a type of mice that, like humans, do not produce vitamin C on their own. The authors inoculated the mice intra-nasally with the influenza virus and monitored survival of those that were vitamin C deficient as compared with those that were not. The mice that were vitamin C deficient, when inoculated, all died within one week, even when given vitamin C supplements one day after inoculation. All the vitamin C sufficient mice survived.

Adequate stores of vitamin C before infection may assist the body with an appropriate immune response to viruses like influenza by bolstering the activity of the body’s natural killer (NK) cells, states the study. Regularly supplying your system with vitamin C may act as a preventative agent when it comes to combating flu symptoms.  

4. Vitamin C Helps Build Collagen

Though it doesn’t relate to respiratory infection directly, it’s worth mentioning Vitamin C’s role in collagen synthesis — as it’s so supportive for general health and pain management in the chronic illness community. 

Collagen is a protein found abundantly in our skin, joints, bones, muscles, and connective tissue. Collagen makes up one-third of the human body, so it’s hard to underestimate its importance! Collagen is super strong, creating long, thin fibrils that support and anchor the structures of the body. It essentially acts as the body’s structural scaffolding. 

When it comes to healing damaged tissues, our bodies must be capable of synthesizing collagen (scarring mostly consists of collagen). Vitamin C is a critical component of collagen synthesis by helping to stimulate the formation of it. Furthermore, this crucial vitamin encourages the healing of bone fractures. 

Further human studies are necessary to understand Vitamin C’s effect on collagen synthesis more clearly. But safe to say, sufficient dietary Vitamin C, or Vitamin C supplementation, could help to support healthy collagenous tissue. Vitamin C also may support skin health and resilience (just look at all the skin creams out there with added vitamin C). 

Foods rich in Vitamin C

There are many delicious fruits and vegetables that are naturally high in vitamin C. Citrus is an obvious choice, including lime and lemon for those on a low sugar diet. Cruciferous vegetables from the cabbage family like broccoli, kale, brussels sprouts, and cauliflower are also high in Vitamin C. For salad lovers, radishes, and watercress are high in C. It’s not hard to incorporate a variety of these disease-fighting plants into your daily diet.

Now is the perfect time to be sure your immune system is robust. Making sure your body has a good supply of Vitamin C — through diet, supplementation, or both — as an optimal means to support health. Talk with your doctor about the best way for you to get vitamin C every day and the amount that’s right for your body.


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 “4 Ways Vitamin C Can Support People with Chronic Illness”

Here’s What You Need to Know about Rickettsia

As most anyone healing from Lyme knows, it’s important to test for possible coinfections to ensure appropriate and effective Lyme disease treatment. Some tick-borne, Lyme disease coinfections, like the parasite Babesia, or the bacteria Bartonella, are on the radars of most Lyme-literate doctors. There are other coinfections, however, that are less well-known and may go undetected more easily. Rickettsia is one of these.

What is Rickettsia?

The genus Rickettsia contains many species of gram negative bacteria. Rickettsiae (the plural) have been around for millions of years, carried by arthropods such as fleas, lice and ticks. Some Rickettsia species cause serious disease in humans (for example, Rickettsia typhi causes typhus). Certain species of Rickettsia can be transmitted by ticks as Lyme disease coinfections. 

Rickettsia as a Lyme Coinfection

Rickettsiae can infect alone, or as coinfections along with Lyme bacteria. The most common rickettsial disease to occur as a Lyme disease coinfection is Rocky Mountain spotted fever (RMSF). A group of several rickettsial bacteria species all cause variations of RMSF. These bacteria are called the spotted fever group (SFG). The most common SFG Lyme disease coinfection is Rickettsia ricketsii. Unfortunately, none of these species are well studied, even in comparison to Lyme and other coinfections.

Stephen Buhner writes in Healing Lyme: Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsioses, that current research on RMSF is showing it to be more widespread than previously assumed in the medical community. RMSF is spread by Rocky Mountain wood ticks, American dog ticks, the Cayenne tick, the brown dog tick, the Lone Star tick and several others. Because these ticks travel on birds, SFG rickettsial bacteria are found just about everywhere in the world except Antarctica. 

Symptoms of Rocky Mountain Spotted Fever (RMSF)

Rickettsia in the spotted fever group infect the endothelial lining of blood vessels anywhere in the body. According to Buhner, symptoms of RMSF range from a mild illness that may be mistaken for flu, to damage to organ systems, septic shock and even death. 

The first symptoms of RMSF to appear are fever and headache. Most infections cause a spotted rash – but not all. The rash – which helps greatly with correct diagnosis – appears two to five days after the initial fever. Some infections also cause an eschar: a rash at the site of the tick bite that fails to heal and can become scabby. Eschars also help with diagnosis. 

Here is a list of possible initial symptoms of RMSF:

  • Fever
  • Headache
  • Rash (non-itchy, small spots on the wrists, forearms and ankles, spreading to the trunk, palms and soles)
  • Eschar 
  • Nausea, abdominal pain, diarrhea and vomiting
  • Cough and sore throat
  • Conjunctivitis

If RMSF progresses untreated, symptoms may include:

  • Arthritis
  • Respiratory distress
  • Bell’s palsy
  • Vertigo
  • Hearing loss
  • Carditis
  • Brain infection and neuropathies
  • Sepsis, coma and death

Testing and Diagnosis

Like many Lyme disease coinfections, treatment is most effective when RMSF is diagnosed early – in the case of RMSF, within five days of onset of symptoms. Unfortunately, this is difficult, as the symptoms , with the exception of the spotted rash, are easy to misidentify as the flu, and vary from person to person. To complicate things, RMSF bacteria do not appear in large quantities in the blood. The CDC recommends that diagnosis be clinical first, and confirmed by lab tests second, in order to begin treatment immediately.

Antibodies to RMSF do not typically appear for seven to 10 days after onset of fever and headache. This makes IFA testing (immunofluorescence assay – testing for antibodies) problematic. A skin biopsy or a cutaneous swab can be used for diagnosis, using tissue from the rash or eschar site. According to Buhner, this is the most reliable test for early diagnosis of RMSF.

Treatment

If RMSF is diagnosed quickly, antibiotic treatment is effective. Doxycycline has been shown to be effective if given within the first 5 days of infection. If infection progresses, IV antibiotic treatments may be necessary.

There are herbal remedies and supplements that may help to combat RMSF, especially with longer term infections that are unresolved with antibiotics. According to Buhner, these herbs very much overlap with herbal treatments for the Lyme bacteria Borrellia burgdorferi, which also infects endothelial cells. 

Here is a partial list of herbs and supplements useful for supporting recovery from RMSF infections. The herbs can be taken as teas or tinctures (tinctures are generally considered stronger), and the supplements are typically swallowed as tablets. Consult your doctor to determine the best course of treatment for you.

Herbs to protect endothelial cells: 

  • Japanese Knotweed
  • Red Sage 

Herbs to support the immune system:

  • Cordyceps 
  • Eleuthero
  • Skullcap 

Supplements to increase production of glutathione, and speed detoxification:

  • NAC
  • Selenium
  • Vitamin C
  • Vitamin E
  • Vitamin D
  • Vitamin B6 and B12

A dark side of Rickettsia?

In her book Bitten: The Secret History of Lyme Disease and Biological Weapons, author and Stanford medical researcher Kris Newby explores the possibility of a certain species of Rickettsia, Rickettsia helvetica, nicknamed the Swiss Agent, complicating the initial outbreak of Lyme disease in the late 1960s and 1970s along the Northeast Coast. An outbreak of this Rickettsia species was documented in 1968 in Cape Cod, Nantucket and Martha’s Vineyard, and another from 1971-76 on Long Island. 

Willy Burgdorfer, the researcher credited with the 1981 discovery of the bacteria Borrellia burgdorferi, was involved in tracking and identifying these earlier outbreaks of Rickettsia helvetica. Correspondence exists between Burgdorfer and other researchers discussing R. helvetica infections in these areas, and their possible contributions to symptoms of what later became known as Lyme disease. But, abruptly, in 1980, investigations into R. helvetica were dropped, and never again resumed. 

Infection with this species of Rickettsia does not cause RMSF, or a distinctive rash. United States labs do not test for it. Science writer Charles Pillar, who covered the story in 2016 in partnership with Newby for STAT, wrote that, though evidence is inconclusive, R. helvetica may still be sickening Americans today, and complicating Lyme disease diagnosis and treatment.

In conclusion

It may be worth asking your doctor to evaluate your symptom profile with Rickettsia species in mind. These are stealth bacteria, just like Lyme and other coinfections. They are adept at disabling the human host’s immune system and at evading detection. It takes diligent detective work on the part of a good doctor to identify all of the pathogens involved in any one case of Lyme disease. Having an accurate picture makes effective treatment a little bit easier.


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 the Coinfections Chlamydia and Spotted Fever Rickettsioses. Silver City, NM. Raven Press, 2015.

Newby, Kris. Bitten: The Secret History of Lyme Disease and Biological Weapons. New York, NY. HarperCollins, 2019.

Piller, Charles. The ‘Swiss Agent’: Long-forgotten research unearths new mystery about Lyme disease. STATnews, 2016, October 12.

Rocky Mountain Spotted Fever (RMSF). Centers for Disease Control and Prevention website. https://www.cdc.gov/rmsf/diagnosis-testing/index.html

The Truth about Healing and Relapsing Everyone Should Know

Previously, I presented part one of a two-part interview with Lyme-literate nurse practitioner Ruth Kriz on the limitations of Lyme disease testing from a nurse’s perspective. In this piece, Kriz furthers her discussion on Lyme disease symptoms, information the medical community may not know about, recovery, relapses, and patient resources. While these articles reflect Kriz’s approach to treating Lyme disease, it’s important to note much of this content can serve as talking points when you are communicating with your healthcare provider.

Following is part two of my interview with Ruth Kriz.

Lyme disease Symptoms, Recovery, and Relapse

Jenny Buttaccio (JB): In the patients that you see, is there a “typical” presentation of what Lyme looks like?

Ruth Kriz (RK): Often, these infections have been camping out in a person for a very long time. Then, the immune system takes a significant hit, and the [infections] bloom. The CD 57 is a natural killer cell that takes the hit if someone has been infected with Lyme. The lower the number, the longer it has been since the original infection; it does not correlate to how sick a person is. But, it’s a clue as to whether I’m looking at an infection that has been there since childhood, or a more recent one. The people I see that have a lower CD 57 have had a longer time for these infections to settle into the body. [The infections] can be deeply entrenched in the nervous system, and patients can have symptoms like brain fog, word finding difficulties, and muscle twitching. In the patients with interstitial cystitis, the infections could be in the bladder or the nerves going to the bladder. I tend to see more complex symptomatology and the need to treat longer in people who have lower CD 57’s, than people who don’t.

JB: Are there some areas regarding Lyme disease treatment that you feel some clinicians don’t fully understand?

RK: They don’t understand biofilms or other forms of infections, like the cyst form (of Borrelia), that virtually become undetectable to the immune system. The biofilms wall the infections off, and once they get established in the joints and nervous system, they can take a heck of a lot longer to root out. If they’re not addressed, you will have relapses. The infections will continue to multiply at a very slow rate over an extended period–and that could go on for years–before it’s enough to make you symptomatic again. Some people do a better job of breaking down biofilms than others, based on a variety of genetic factors.

Also, maybe other clinicians aren’t factoring in how long the infections have been deeply entrenched in the body? The medical system typically works on protocols. For example, if you come to me, I give you this medicine for (a specific) length of time. Then, we go after these infections for that length of time, and you then “pop out” on the other end and declare that you are now well. The problem is that doesn’t work for Lyme, because everybody presents with a different infectious load, a different number of coinfections, and a different number of biofilms. So you can’t just march everyone through the same program and expect the same response.

Finally, many physicians aren’t aware that Lyme depresses some of the immune markers that are used to diagnose it according to CDC standards. Therefore, patients have a lot of false negatives, and physicians don’t believe that the Lyme is there, when, in reality, it is.

JB: Do you have any insights as to why Lyme disease recovery may have stalled out or why a patient might relapse?

RK: I have a couple of theories about it. I think it’s difficult to know when the Lyme is adequately treated. When we’ve reached the negative point, it is often long after the symptoms have receded. Sometimes, when you’re very sick and start feeling better, you think you’re done treating. But the reality may be that you’re not.

The second issue in chronic Lyme disease is that just because you’ve been diagnosed with Lyme doesn’t mean that you don’t have other coinfections making you sick as well. The last tick I sent out for DNA testing came back with 43 tick-borne infections. Many of the tick-borne infections that tend to persist–we’ve got Bartonella, Babesia, Ehrlichia, Anaplasmosis, Brucella, Rocky Mountain Spotted Fever, Mycoplasma–competitively inhibit each other. When you knock the big ones back, some of the little ones become bigger players, and people continue to be sick. Just because you’re still sick doesn’t mean it’s because of the Lyme. It could very well be an undiagnosed coinfection.

JB: We know many Lyme patients are financially strained. What steps has your office taken to help Lyme patients?

RK: Patients have already spent tens of thousands of dollars before they ever call me. We have an account with the Professional Co-op so that if people don’t have health insurance, it will pay for some of the routine commercial lab tests; we can get discounted rates. We also try to figure out which tests are a priority so that it isn’t such a big expense up front. I try to use the labs that accept insurance, but some of the specialty labs don’t fit into the mainstream picture, so they’re cash only. Some of the labs I work with have been very generous in allowing us to select people who need the testing but really can’t afford it on their own.

There are a certain number of pharmaceuticals that we can provide to people at extremely good rates as well. It’s not a huge selection, but it’s better than zero. I also have a couple of connections with some pharmacies that give us samples. Prescription Hope has been very generous in helping people if they qualify to get medications at lower costs. I do what I can; it never seems to be enough because the needs are always surpassing the resources.

Finally, don’t discount the efficacy of herbals. There are some very affordable, user-friendly approaches. Herbals have great advantages in that you can titrate the dose by the drop. Therefore, you can control how much herxing goes on. [Herbal protocols] can be a primary therapy, as well as, an adjunct therapy. It can be ideal for children; many flexible spending accounts will reimburse for herbals.

JB: Thank you so much for willingness to do this interview. Is there anything else you’d like Lyme patients to know?

RK: Yes! When you start killing many of the tick-borne infections, they release toxins. These toxins are pro-inflammatory, and they will cause the areas of your body where the infection has been to flare up. This is where detoxing becomes even more important. Pulling the toxins out of your body and helping your liver get rid of them is going to mean you can continue treating more effectively and not have your whole life disrupted because you can’t function.

Finally, there’s a myth out there that Lyme disease is untreatable, that you’ll always have it, that people don’t get well, but that’s not been my experience either personally or with the vast majority of my patients. I think it takes persistence. It takes commitment. It takes educating yourself about how your body responds to treatment and learning what the roadblocks are for you, but it’s possible to get better.

This article was first published on ProHealth.com on May 18, 2017 and was updated on March 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.

What is Positional Cervical Compression Really All About?

Many diseases that primarily affect women have been considered “purely psychological” by medicine just because the physical origins of the conditions aren’t yet understood, suggests Maya Dusenbery, writer, editor, and author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

With it’s long road to legitimacy, fibromyalgia is one such condition. It affects primarily women; an astonishing 75% to 90% of fibromyalgia patients are female. And, before the 1990s, fibromyalgia was widely believed to be a psychological phenomenon, with no organic, physical cause. 

Recent Evolution in Fibromyalgia Diagnosis 

In 1990, the American College of Rheumatology Research Classification Criteria (ACR RCC) for fibromyalgia was published, giving physical, diagnostic criteria for fibromyalgia for the first time. In order to receive a diagnosis of fibromyalgia, a patient needed to report widespread pain for at least three months and to present with at least 11 of 18 tender, soft tissue trigger points. 

Later in the 1990s, causative factors for fibromyalgia were proposed.  The ACR RCC revised its criteria for fibromyalgia in 2010 to reflect these changes. A diagnosis of fibromyalgia was then understood to be caused by a hyper-functional autonomic nervous system. This hyper-function could trigger tachycardia, fatigue, insomnia, depression, and hyperthermia, as well as widespread pain. As of 2010, the necessity of displaying specific painful trigger points was discarded by the ACR RCC.

In the early 2000s, a theory initially presented by Johns Hopkins trained neurosurgeon Dan Heffez, MD, to the National Fibromyalgia Research Association convinced some doctors that fibromyalgia may not be a primary condition at all, but rather a secondary condition — meaning the hyper-function of the nervous system seen in fibromyalgia could arise from an underlying cause. 

Dr. Heffez works with cervical myelopathy patients — patients who have injuries or degeneration causing compression of their cervical spinal cord (the spinal cord of the neck). Dr. Heffez has contributed to two studies linking fibromyalgia to cervical myelopathy. A 2004 study showed that some fibromyalgia patients have neurological symptoms consistent with cervical myelopathy. A 2007 study showed that surgical treatment of cervical myelopathy in patients diagnosed with fibromyalgia significantly improved fibromyalgia symptoms

Dr. Heffez theorizes that in significant numbers of fibromyalgia cases, both autonomic hyper-function and its resulting symptoms, including widespread pain, can be caused by positional compression of the cervical spinal cord, or PC3. 

What is Positional Cervical Compression (PC3)

Positional cervical compression occurs when parts of the spinal cord in the neck are compressed – but only in certain positions. In cases of PC3, the cervical spinal cord is most often compressed during neck extension, when the patient tilts their head backward, say, to look up at the sky. In cases of PC3, a number of structures can compress the cervical cord with the neck in extension, including displaced discs from trauma or degenerative disc disease, an injured ligamentum flavum (a spinal ligament often linked to stenosis, or the narrowing of the spinal canal), or the Chiari 1 malformation (a congenital disorder that compresses brain and spinal cord structures). 

Dr. Heffez believes PC3 has been overlooked as a possible cause of fibromyalgia due to the fact that diagnostic MRIs are almost always taken with the cervical spine in a neutral position. In order to see PC3 in an MRI, the neck has to be in positions other than neutral, with images ideally compared in a neutral position as well as in flexion (looking down toward the toes) and in extension (looking up overhead). 

Symptoms of PC3 

PC3 can cause both widespread referred pain and neurological symptoms, due to the intermittent, positional compression of the cervical cord. However, each patient is different, and some do not show symptoms. However, when symptoms are present, they can include:

  • Diffuse muscle pain
  • Worsening pain with neck extension
  • Neck discomfort
  • Fatigue
  • Sleep disturbances
  • Balance problems
  • Dizziness
  • Gait issues
  • Grip strength discrepancy 
  • Numbness

The list of symptoms can vary from one person to another, and more research is needed to fully understand PC3 and the profound effect it may have on fibromyalgia patients. 

Testing and Treatment for PC3 

Traditionally, MRI imaging of the spine in multiple positions has been expensive and unlikely to be reimbursed by most insurance companies. Therefore, it’s often not ordered. However, if you suspect PC3 may have bearing on your symptoms, discuss it with your doctor. They may be able to refer you to a cervical myelopathy specialist, which are typically located at orthopedic clinics and departments, and spine centers throughout the country. 

In regards to treatments, both physical therapy or surgery may be helpful in resolving or lessening fibromyalgia symptoms in those who have PC3. One clinic, Pacific Rheumatology Associates in Renton, Washington, has developed physical therapy programs to treat PC3. The programs aim first to improve proprioception (the awareness of where the body is in space), and then to stabilize and support the ligamentum flavum in the cervical spine. Initial outcomes are encouraging, though more research is needed to determine exactly what is working and why. 

PC3 in Conclusion

These developments in understanding one possible underlying cause of fibromyalgia are heartening. The authors of the 2004 study (mentioned above) conducted by Dr. Heffez and others suggest that a detailed neurological examination be completed for fibromyalgia patients in order to rule out cervical cord compression. If you feel your symptoms are consistent with cervical myelopathy or PC3, talk with your doctor about further evaluation, and research treatment options accordingly. 

In the 2007 study mentioned above, Dr. Heffez and the other authors conclude that surgical treatment of compressive cervical myelopathy or PC3 in patients with fibromyalgia can significantly improve symptoms. Surgery is a major step, and most will only consider it as a last resort — if physical therapy and drug interventions don’t help. 

Should you and your doctor decide to look into surgery, consider speaking with other fibromyalgia patients who have made the same decision. There is a support group on facebook through the Cervical Myelopathy Foundation that may connect you to people who can help you make the right decision. Regardless of the path you choose, support from others and sharing information with a community can be a valuable tool on your healing journey.


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.

 

 

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