Strengthen Immunity with These 5 Natural Remedies

With the United States quickly approaching a half-million confirmed cases of coronavirus and more than 10,000 deaths, fear continues to climb. In response to the emerging COVID-19 crisis, the Eastern Virginia Medical School (EVMS) Medical Group has responded with an updated approach to preventative and critical care based on the most recent literature and the Shanghai Management Guideline for COVID.

Dr. Paul Marik, developer of the EVMS Critical Care COVID-19 Protocol, shares his one-page summary outlining the newest guidelines for patients at all stages of infection. While a majority of the protocol is a guideline for professional medical doctors and nurses, there are natural suggestions for at-home care that may bolster immunity and have antiviral properties.

Although the supplements outlined in the data are unspecific to COVID-19, the low-cost and readily-available cocktail just might mitigate the disease by supporting healthy immune system functions. If you are over the age of 60, struggle with pre-existing medical conditions, or if you simply want to be proactive in preventive measures, now might be a good time to consult with your healthcare provider about which of these could be an effective addition to your daily routine and what dosages are right for you.

Five Natural Remedies to Strengthen Immunity

1. Vitamin C

Ascorbic acid (Vitamin C) is well known as an immune-enhancer able to curtail viral activity, boost antioxidant levels, lessen inflammatory response, and bolster immunity. A current clinical trial using IV vitamin C for COVID is being conducted in response to a lack of targeted antiviral drugs. Based on past studies, it was hypothesized that vitamin C infusions could improve the prognosis of patients with severe acute respiratory infection (SARI). “When sepsis happens, the cytokine surge caused by sepsis is activated, and neutrophils accumulate in the lungs, destroying alveolar capillaries. Early clinical studies have shown that vitamin C can effectively prevent this process,” as noted in the clinical trial description.

But while IV vitamin C is being studied specifically for use in COVID-19 patients, data is not yet conclusive, and it cannot be easily administered at home without a doctor’s prescription. However, it is well documented that oral form vitamin C can be safely used to provide preventative immune support.

  • Suggested Immune Support Dosage: 500 mg twice daily

2. Zinc

Zinc is another potent viral inhibitor, particularly when coupled with vitamin C. A deficiency in zinc may hinder the body’s innate immune response, impairing its ability to adequately defend against pathogens using a variety of physical, chemical, and cellular mechanisms. When paired together, both zinc and vitamin C work synergistically to sustain immune health and fortify the body against infections. They may work in tandem to reduce the risk, length, and severity of illness.     

While zinc is not advised to be taken for more than one to two months at a time, it is good to use when feeling especially vulnerable to acute exposure. Zinc lozenges are considered the best delivery, but any form that contains zinc acetate, gluconate, or picolinate is ideal.

  • Suggested Immune Support Dosage: 75-100 mg once daily

3. Quercetin

Quercetin, a natural pigment present in plant compounds known as flavonoids, is one of the most abundant antioxidants in the diet. The average person consumes up to 100 mg of these flavonoids naturally through their diet from food sources such as citrus, berries, broccoli, leafy vegetables, tomatoes, red grapes, and tea. When taken alone as a supplement, quercetin is not readily absorbed, which is why it is often combined with vitamin C or digestive enzymes, like bromelain, to increase bioavailability. Quercetin has broad antiviral properties and inhibits heat shock proteins required for viral assembly, making it a powerful addition to the immune-protecting cocktail.

  • Suggested Immune Support Dosage: 250-500 mg twice daily

4. Melatonin 

Melatonin, a naturally-occurring hormone produced by the brain in response to darkness, is most widely known in its supplemental form as a natural sleep aid. Aside from helping the body fall asleep faster and stay asleep longer, recent data suggests that it is also a strong antioxidant, anti-inflammatory, and immune modulator. Sleep is the time when our body does most of its self-repairing work, and it is essential as a solid foundation for health. After age 40, melatonin production levels drop significantly, making sleep and immune health lower as well. One 2013 study determined that melatonin acted as a stimulant in immunosuppressed conditions, and as a regulator in overactive responses, such as septic shock. Although it’s generally safe for most adults, consider consulting with a doctor before using it — there may be some contraindications in people with high blood pressure, diabetes, seizures, and more.

  • Suggested Immune Support Dosage: A slow release of 0.3 mg, increasing to 1-2 mg at night, as tolerated

5. Vitamin D3

During winter, most of the population experiences less than optimal levels of vitamin D due to lack of sun exposure. When vitamin D levels are low, the risk of developing upper respiratory tract infections increases. A 2011 study concluded that when you have a vitamin D deficiency, you’re more susceptible to infections — not to mention autoimmune conditions, too.

Due to its immune-strengthening effect, vitamin D should be a great tool to defend against infectious agents, especially in elderly individuals or those living above 40 degrees latitude. Consider getting your levels tested by your doctor. If you are testing below 25 OH, you’ll likely benefit from vitamin D supplementation.

  • Suggested Immune Support Dosage: 1000-4000 u/day

Combine this supplement cocktail with healthy habits, including adequate rest, stress reduction techniques, minimizing your consumption of alcohol, a nutritious diet, and exercise as tolerated, and you’ll be well on your way to giving your immune system the best chance of warding off infections now and throughout the year.

Also, it’s a good idea to gather contact information for local clinics and hospitals and educate yourself on the current operating procedures for local testing and hospital admission if you experience symptoms related to covid-19. With much information transforming daily, it is crucial to stay updated in the event you or a loved one should require medical intervention.


Jenny Menzel is a Certified Health Coach and branding specialist for various alternative healthcare practices, and volunteers her design skills to the annual grassroots campaign, the Lyme Disease Challenge. Jenny was diagnosed with Lyme in 2010 after 8 years of undiagnosed chronic pain and fatigue, and continues to improve by employing multiple alternative therapies, including Āyurveda, Chinese Medicine and Bee Venom Therapy.

 

References:

Continue reading “Strengthen Immunity with These 5 Natural Remedies”

Is it Safe to Donate Blood if You’ve Been Diagnosed with Lyme Disease?

In light of COVID-19, blood service providers around the country are asking for donations. But is this an area in which Lyme disease patients can help? The risk of whether tick-borne diseases infect American blood banks is hotly debated. While some studies and documented cases have traced transfusion-transmitted tick-borne infections back to donors, Lyme disease is not on the list of threats at this time. However, Lyme has secured itself as the most common and fastest-growing vector-borne illness in the United States, and with the Centers for Disease Control and Prevention (CDC) projecting above 300,000 new infections annually, the matter begs for more research. By comparison, each year there are six times more new cases of Lyme than HIV and AIDS, with Lyme disease receiving less than 1% of HIV funding. 

Are climbing infection rates, unreliable diagnostic tests, insufficient treatments, and lax donor eligibility guidelines creating the perfect storm for unrecognized transfusion-transmitted Lyme disease? With continued nationwide blood shortages, the urgent need for donations remains high. While donor eligibility guidelines seem to be a straight line for acute, early-onset Lyme disease, that line blurs when we consider the intricacies of Lyme, especially of patients with Post Treatment Lyme Disease Syndrome (PTLDS), more colloquially known among the patient population as chronic Lyme disease.

What is the current standard of eligibility? If you’ve ever been diagnosed with Lyme disease, here is what you need to know about this ongoing discussion to best determine whether it is safe for you to donate blood.

Lyme Disease and Blood Donation

1. Has your Lyme disease been resolved? The main requirement to determine if you are eligible to donate blood after testing positive for Lyme disease is that you have resolved or cured the infection. “Individuals being treated for Lyme disease with an antibiotic should not donate blood. Individuals who have completed antibiotic treatment for Lyme disease may be considered as potential blood donors,” states the CDC.

Donor eligibility varies slightly amongst states and collection sites, but most sites carry similar guidelines. For example, the blood service provider Vitalant requires a 30-day wait after a Lyme diagnosis, completion of a standard 21-day antibiotic treatment, and being free of symptoms at the time of donation in order to be eligible to donate. On the other hand, the American Red Cross, which accounts for 45% of the transfused blood in the U.S., requires no wait time following standard Lyme treatment.

If Lyme were defined only as an early, localized illness, meaning it is diagnosed and treated within 1-4 weeks of exposure, it might easily be resolved by CDC-approved standard treatment. However, resolution can be difficult to achieve due to the timing of diagnosis and the current treatment standards set by the Infectious Diseases Society of America (IDSA).

There are three stages of Lyme disease:

  1. Early localized: 1-4 weeks 
  2. Early disseminated: 1-4 months
  3. Late disseminated: more than 4 months 

Lyme disease specialist Dr. Tania Dempsey, founder of Armonk Integrative Medicine in New York, explains the differences among the three stages of illness:

“Early localized Lyme disease is the stage when a bull’s-eye rash can appear, or patients can develop flu-like symptoms. Some patients don’t have any symptoms at this stage. If appropriate antibiotic treatment is started as soon as possible and treated for at least 28 days, although longer courses are sometimes necessary. Resolution of Lyme disease is definitely possible,” says Dempsey. 

“Once early disseminated Lyme sets in, around one to four months, the symptoms can be more severe, indicating the infection has likely infiltrated the joints, nervous system, and other parts of the body. It is critical that the infection be treated no later than this point, as this increases the likelihood of the development of chronic Lyme disease. Prolonged, multi-drug antibiotic courses may be needed at this stage.” she adds. 

Once Lyme reaches the late disseminated stage, aggressive multi-antibiotic treatments are often called for by Lyme-literate doctors to reverse damage to the heart, joints, and other body systems, but sometimes damage is irreversible.

 “Persistent infection, despite antibiotic treatment, is real and has been shown repeatedly in the lab,” says Dempsey. In fact, a 2018 study confirmed what is still being questioned today by mainstream doctors as a controversial theory. A slow-growing form of Borrelia burgdorferi resisted the standard single-antibiotic treatment in test tubes and within a murine model. Where administering one and two-antibiotic treatments failed to resolve resistant Borrelia, a three-antibiotic cocktail — which includes daptomycin, doxycycline and ceftriaxone – was administered to infected mice and proved to fully eradicate the bacteria. This widely opens the door to doubt as to whether the standard Lyme treatment is adequate in resolving infection, especially in later stages of illness where early diagnosis was missed. 

2. Do you have active symptoms? With resolution of infection comes the assumption that symptoms of the illness are gone. When asked about chronic Lyme patients that display symptoms such as arthritis and ongoing fatigue after the standard 21-day treatment, American Red Cross only considers ineligibility if the symptoms include a fever or a rash. “We don’t have a set list of symptoms we look at. As long as you don’t have a fever or feel unwell at the time of donation, lingering symptoms like joint pain or fatigue wouldn’t cause you to be ineligible to donate,” a Red Cross eligibility specialist told ProHealth. 

When asked what would constitute active symptoms, Vitalant representatives also provided a nonspecific answer: “If you feel generally good and don’t have a fever, you would be eligible to donate, provided you’ve completed standard antibiotic therapy, and it’s been 30 days after your diagnosis.” 

Due to its similarity to syphilis, Lyme was quickly placed into the medical category of “The Great Imitator” as early as the 1980’s when it was shown to mimic over 100 different diseases. Due to flawed diagnostic abilities and a symptom list extending much further beyond a fever and bull’s-eye rash, an untold number of diagnoses are suspected to be missed or delayed. It is no surprise, then, that most of Dempsey’s patients come to her after years of chronic illness and lack of relief. While some know that Lyme disease is at the root of their symptoms, some don’t. “Whether the infection can be fully cleared at this stage is unclear.” Dempsey says. “Patients know their bodies well, and I rely on them to tell me if their symptoms persist or have resolved. However, it is important to note that patients without persistent symptoms could still have hidden Borrelia in their cells. They just may not be active or causing any issues.”

Concerns for Further Consideration

We can see how two simple questions can snowball into a complex knot of uncertainty. When it comes to determining whether Lyme patients can transmit Borrelia through blood transfusions, the available science has only solidly concluded the following:

THERE HAVE BEEN NO REPORTS OF TRANSFUSION-TRANSMITTED LYME IN HUMANS

This sounds comforting. Unfortunately, the absence of reports may be due to an absence of monitoring. Regulations and requirements to test blood donors for Lyme disease don’t exist, even in high-risk, endemic states like New York. What’s more concerning is that even if testing was required, Lyme disease testing has been proven to show low sensitivity and low specificity. This means the testing available isn’t adequate to provide consistently accurate results, which could confirm a donor is truly resolved of the pathogen that causes Lyme disease. A 2018 article in Frontiers of Microbiology points out, “No serologic testing or molecular analyses are routinely done which would be needed in order to fully ensure that potential asymptomatic, Borrelia-infected donors are excluded from the donor pool.”

LYME BACTERIA HAS BEEN TRANSMITTED TO MICE THROUGH BLOOD TRANSFUSION
A 2006 study demonstrated that Borrelia burgdorferi was transmitted from infected to naive mice by blood transfusion. Due to the obvious ethical reasons, a similar study has not been reproduced with humans. However, this study supports the notion that untreated Lyme disease may be transmittable through blood.  The World Health Organization (WHO) states Lyme disease “can survive blood storage temperatures,” and that transfusion-transmission in humans is “possible but has not been reported.”

SIMILAR INFECTIONS LIKE SYPHILIS REQUIRE A ONE YEAR DEFERRAL
Syphilis is caused by Treponema pallidum, a spirochete not so dissimilar to the spirochetal bacterium Borrelia. The WHO writes in their guidelines on assessing donor suitability for blood donation, “Endogenous bacteria that are transfusion-transmissible include Treponema pallidum, Borrelia burgdorferi, Brucella melitensis and Yersinia enterocolitica, but blood donations are routinely screened only for T. pallidum.” With syphilis requiring a 12-month post-treatment deferral, it seems plausible to at least consider Lyme disease as worthy of a longer deferral period following treatment and symptom resolution. Currently, the WHO recommends deferring Lyme patients only 28 days following treatment, or a full recovery — whichever is longer.

Drawing Conclusions

Anyone with experience with Lyme knows the diagnosis is shrouded in a controversial haze of conflicting and missing information. This makes for a foggy understanding when it comes to not only accurately diagnosing, but also obtaining appropriate treatment to resolve the varying range of symptoms this tick-borne disease inflicts. Lyme grays a variety of life areas for patients that would otherwise be straightforward, including whether or not one is truly eligible to donate blood without putting recipients at risk for exposure to Lyme disease.

 As a specialist in treating complex, chronic cases of Lyme, Dr. Dempsey tends to mostly see very ill patients who are often not well enough to consider the possibility of donating. However, when the topic does present itself, she offers her professional opinion:

“Any patient who has suffered from PTLDS/chronic Lyme or co-infections, including Bartonella and Babesia, should not donate blood. It is clear from recent research that persistent infection is a real possibility, particularly in patients with continued symptoms. Unfortunately, donor recipients are not given any information about who their donor is or what their medical history is so there is no way for them to have any input about whether the blood has come from someone with chronic Lyme or other tick-borne infection.”

Are you considering donating? Keep the following in mind:

  • Talk to your Lyme specialist or Lyme-literate medical doctor. If you’re interested in donating blood, it’s always best to consult with your Lyme specialist or Lyme-literate medical doctor (LLMD) beforehand. Determine whether you have remaining symptoms due to persistent infection and whether this causes ineligibility. 
  • Know that most blood collection sites will consider you safe to donate. Persons with acute Lyme disease likely won’t feel well enough to consider donating blood, but patients who are labeled cured or in remission may easily be eligible. With this in mind,  talk to your LLMD about whether it’s safe to donate considering the facts and lack of research available.
  • Speak with the doctor on site. At most blood donation centers across the nation, there is an on-site doctor available to discuss eligibility in more depth. Use the opportunity to ask questions to ensure you have all the information you both need to make an informed decision on whether blood donation is safe in your case. Since many mainstream doctors aren’t aware of the facts surrounding Lyme disease; foster dialogue if they are open to learning.

Ultimately, if you have any doubt about whether or not you’re in the clear, the best option would be not to donate until there are better diagnostic capabilities and ways to ensure the blood supply can be kept safe from Lyme disease.


Jenny Menzel is a Certified Health Coach and branding specialist for various alternative healthcare practices, and volunteers her design skills to the annual grassroots campaign, the Lyme Disease Challenge. Jenny was diagnosed with Lyme in 2010 after 8 years of undiagnosed chronic pain and fatigue, and continues to improve by employing multiple alternative therapies, including Āyurveda, Chinese Medicine and Bee Venom Therapy.

 

References:

Continue reading “Is it Safe to Donate Blood if You’ve Been Diagnosed with Lyme Disease?”

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

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.

 

 

References:

Continue reading “What is Positional Cervical Compression Really All About?”

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?”

Wet Cupping and Lyme: Here’s What You Need to Know

Learn about wet cupping and how it may help the symptoms of Lyme disease.

After finishing my second round of pañchakarma in India, I found myself in a healing crisis of inflammation, acne and hormonal disruption, indicating an internal heat had gradually built up in my blood due to long-lived chronic Lyme disease. What the exact pathogenic infections were, one could only guess, as Lyme is rarely ever just Lyme. Given my CDC-positive, Western Blot Lyme disease test from years prior, it was likely that the causative bacteria, Borrelia burgdorferi, was at least partially responsible. 

To cool and clean my blood faster, my Āyurvedic practitioner suggested dumping my toxic blood with a therapy called raktamokshana, more commonly known in the West as bloodletting. Without any traditional Āyurvedic methods at my fingertips, a gentle form of bloodletting used in Chinese medicine was suggested: wet cupping. 

What is cupping?

Cupping has become increasingly popular since Michael Phelps was seen covered in odd, circular “bruises” during the 2016 Olympics, but this therapy is far from new. Like many traditional therapies, cupping dates as far back as 1500 B.C. to Egyptian, Chinese, and Middle Eastern cultures.

There are two types of cupping:

  • Dry
  • Wet

In both therapies, cups (most commonly made of glass or plastic) are placed on the skin and suctioned to produce a pull that draws blood to the surface. The suctioning effect of the cups results in a discoloration of the skin, which looks like a bruise and varies depending on the state of the patient’s blood. 

The main difference between wet and dry cupping is that wet cupping is performed with the intention of drawing out blood,” says Larissa Kempf, BS, MCM, acupuncturist in Aberdeen, South Dakota. In wet cupping, “Typically, the skin is punctured either by an acupuncture needle, small lance, and in some cases, a scalpel. The amount varies based on the practitioner and what is being treated.”  At the most, Kempf never removes more than a teaspoon or so of blood from each area.  

Comparatively, dry cupping is done without the intention of drawing blood. Cups are attached to the body with suction and can be manipulated with pulling or sliding. Harmful heat is still released from the body and induces muscle relaxation, relieves tension in the fascia, and helps with basic lymphatic drainage. But the advantage of wet cupping is that it’s superior in relieving blood stasis.

My first wet cupping experience

At my first session with Kempf, she strategically chose certain sections of my back to bleed. She gave a bit of a scratch to my skin to warm it up, followed by three quick needle pokes. Then, she squeezed my skin to ensure blood was exiting. Next, she dabbed the skin with isopropyl alcohol and lit a glass cup with fire to suction over my punctured skin. If the pokes hurt, I had quickly forgotten once the relief of the suction cups pulled on the tension in my back. On average, I am usually punctured in 4-6 locations per visit, depending on my state of health; the cups remain on my skin for up to five minutes before being taken off. 

The results? 

They vary with each session as my blood quality improves or diminishes. My first session resulted in expelling dark, thick, gunky blood; the type of blood that was slowing down my circulation, adding to my constricting chronic pain symptoms, and leaving my blood and muscles unnourished and with little oxygen. After a few sessions I could see the acne on my chest and face decrease, and it felt like my body was receiving more nourishment as I gained a couple of much-needed pounds. Everyone will have different results based on the health reasons for employing bleeding cups. Personally, my body tends to benefit from a steady “less is more” approach. Therefore, I alter between a combo of wet cups and dry cups to manage my Lyme disease symptoms. 

Which Lyme Disease Symptoms can be Improved by Wet Cupping? 

1. Inflammation: Inflammation is a very common self-protective response to any illness or injury as it is the body’s way to induce healing. Most Lyme patients may find relief from their inflammatory response to illness through wet cupping. When the skin is punctured, histamine is released which has a vasodilating and anti-inflammatory effect, which simultaneously boosts the immune system and seeks to reduce heat in the body.

2. Blood Stasis: Blood stasis means blood is not circulating or flowing properly, leading to a host of issues. Common causes can be localized injuries such as a sprain, or it can stem from more systemic issues like emotional stress, chronic infection, or imbalances in diet, routine, or sleep patterns. The result is decreased qi (energy), which translates into lowered immunity. Bringing stuck blood to the surface circulates it and clears cellular debris, boosting immunity and more easily transporting nutrients, oxygen, and medicines to needed locations.

3. Pain relief: The pressure from the suction, which draws the blood to the surface, forces relief of stubborn muscle tension, joint pain, inflamed tissues, and poor lymphatic drainage. Many Lyme patients are inactive due to illness, which contributes to blood stasis and pain conditions.

Often times with chronic muscle injuries [chronic illness], blood and cellular debris can remain trapped in the muscle and in the layer between the skin and the muscle. Bleeding the area allows for a histamine reaction to occur that helps move the debris and old blood,” Kempf notes.

4. Skin conditions: When addressing pathogenic infections, it’s imperative that the blood remains flowing in order to excrete neurotoxins from die-off. When blood stasis occurs, these toxins will try to find other ways to exit the body, usually through the skin, causing acne and other skin issues. Wet cupping can alleviate some of these skin conditions by expelling the excess heat in the blood and inducing healthier circulation.

5. Menstruation disorders: Women with blood stasis due to chronic Lyme often have a congested liver, which affects them most during their monthly cycle. With the liver responsible for regulating hormones and filtering blood, blood health is a big part of endocrine health. Endometriosis, female infertility, and PMS can be improved by treating blood stasis with professional. wet cupping therapy.

Safety Concerns or Contraindications for Wet Cupping

As with most things, there are reasons to be mindful when choosing a professional to work with in the field of wet cupping. Any time you are working with fire, skin puncturing and bloodletting, you are put at risk for the following:

Burns: With the traditional glass cupping method, fire is used to heat the cups and create the therapeutic suction. Although very rare, there have been 20 cases between 2009 to 2016 that required medical attention, according to the Medical Journal of Australia.    

Keep in mind, many practitioners use plastic cups with a manual pump to create the suction, thereby reducing the risk of burns from fire. However, unlike glass, plastic is easily scratched, inviting the possibility of cross-contamination in the event of poor sanitation practices. In the case of wet cupping where blood is involved, using easily sanitized glass cups proves to be a safer option, or using disposable, single-use plastic cups.

Scars: Any time needles or lancing skin is employed, the risk for scarring exists. With the puncturing and light bleeding practices of the traditional Chinese method, the risk is minimized. Permanent skin discoloration is also unlikely, but possible.

Infection: Again, breaking the skin leaves an opening that can invite infection if not properly cared for after your sessions. Working with a practitioner with healthy hygiene and sanitation practices will drastically reduce this risk.

Anemia: Iron deficiency as a result of wet cupping is not likely to result in healthy individuals, but it could if too much blood is drawn per session. For those with a history of anemia or a complicated illness like chronic Lyme disease, supplementing with iron may be of most benefit, especially if therapy is useful and done for an extended time period.

The following conditions should be mentioned to your practitioner when considering whether cupping is a safe practice for you:

“Bleeding cupping is not always appropriate for patients with fibromyalgia, where even cupping can be too stimulating and cause pain. Cupping (wet or dry) is rarely employed on anyone with very thin skin, persons taking blood thinners, individuals with a bleeding disorder, or on pregnant individuals. If you bruise easily or have any concerns, it is best to talk to your practitioner and make them aware of any issue regarding blood clotting that may be present. Even daily aspirin can cause more bleeding than usual and this is important to mention to your practitioner,” cautions Kempf.   

My final takeaway

As a chronic Lyme patient, or PTLDS (Post-Treatment Lyme Disease Syndrome) patient for those who don’t believe in chronic Lyme, I also experience fibromyalgia symptoms in portions of my body, such as my legs. I can attest to even gentle dry cupping being too painful and traumatic to those areas of my body. Dry or wet cupping is likely to provide you benefits to areas of your body that can tolerate higher amounts of pressure, which is usually a signal of stuck qi and blood stasis. Lyme disease treatment is incredibly complex with patients needing individualized approaches. By researching therapy options and interviewing practitioners before committing to their services, you will be able to reach a level of comfort, which can only enhance your healing benefits.  


Jenny Menzel is a Certified Health Coach and branding specialist for various alternative healthcare practices, and volunteers her design skills to the annual grassroots campaign, the Lyme Disease Challenge. Jenny was diagnosed with Lyme in 2010 after 8 years of undiagnosed chronic pain and fatigue, and continues to employ alternative healing therapies, including Āyurveda, Chinese medicine and Bee Venom Therapy.

References:

Continue reading “Wet Cupping and Lyme: Here’s What You Need to Know”

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

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”

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.