A geriatric nurse practitioner disabled with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) living as well as I can with a chronic illness. Always a bit introverted, tendency to geek out about medicine, health, nutrition, gardening/permaculture. Hoping to make someone's path easier by sharing information on diet, medical research and what I've found works for me ~~ Ellie Strand, MSN, RN, APRN (Ret.)
Our fifth installment of photos that make me relax just by looking at them. I’m posting in the hope that they will also be relaxing to other spoonies. If you don’t know what a spoonie is, here’s a short article that explains it.
Want to see something in particular? Let me know below.
Christmas may have come early for the millions of people around the world affected by Myalgic Encephalomyelitis (ME), also erroneously called chronic fatigue syndrome (CFS).
As reported yesterday (it’s Australia and the 23rd) by Sue Dunlevy, National Health Reporter for News Corp Australia, scientists have confirmed ME is real. They not only have a possible blood test for it, but there are already drugs on the market that may work.
A team of scientists at Griffith University, led by immunology professor Sonya Marshall Gradisnik, identified errors in calcium channels in each cell. These channels located on the outer membrane open and close to allow movement of calcium in and out of the cell. Calcium is used by just about every cell in the body and is an important part of the immune system.
Calcium Channel Dysfunction
According to the study, patients with ME have lower levels of calcium in our cells and our cells do not store calcium as do healthy people. The immunologists believe this is the basis for the many different signs (things you can see and measure) and symptoms )(what you feel) that are a part of having ME.
Calcium signaling is vital to proper functioning of the central nervous system (brain and spinal cord), the pancreas (insulin production), kidneys, gastrointestinal (GI) tract, blood vessels and the heart. Some cardiac patients take medications to help regulate their calcium channels, and these are being examined as a potential treatment.
A test may be developed from micro RNA changes found in the blood.
What do you think? Will this be another XMRV retrovirus that appears promising when reported out of one lab, but cannot be replicated in other labs and finally ends with a whimper?
Most folks who are chronically ill are aware of “regular” medicine in which you see a doctor and usually receive medication and “alternative” medicine, also called natural, traditional, holistic or functional. I’m not out to change anyone’s faith in their healthcare provider, but if you or a loved one is facing a serious chronic illness or chronic condition you need to at least be aware there are alternatives. Genetic, environmental and lifestyle factors all have a direct influence on long-term health and chronic illness issues.
When pursuing my Master’s degree, I focussed on what was then called Complementary and Alternative Medicine (CAM) along with my Geriatric NP preparation. (I certified as an adult NP because it gave me a wider scope of practice.) However, geriatrics was my calling. Perhaps because I was in my early 50s when I earned my NP certification?
CAM has always had a number of treatment modalities under its umbrella–acupuncture, Traditional Chinese Medicine, Ayurveda, yoga, and music therapy, to name a few. The newest non-traditional western medicine entry is something called Functional Medicine (FM). FM practitioners look at the cellular level to fix, or if that is not possible, support errant body systems. It addresses the underlying cause of chronic illness instead of treating symptoms.
I used FM earlier this year to reset my hypothalamus-pituitary-adrenal axis (HPA axis). The HPA axis is shorthand for the feedback loops that exist between two brain structures–hypothalamus and pituitary–and the adrenal glands located right on top of both kidneys. The H-P part of the axis produces hormones that signal the adrenals to control the body’s reaction to stress and regulate things like digestion, energy storage/expenditure, and the immune system.
I was convinced I had what is popularly called “adrenal fatigue” and “leaky gut” and these two aberrations were at the root of many of my symptoms. I found an FM practitioner within driving distance, but this wasn’t necessary as she worked exclusively through email and Skype. To confirm my own diagnoses and determine what was really going on, I did a saliva test and a stool test. Neither test was difficult or even messy. The tests arrived in the mail with complete, easy to understand instructions and their own paid return after sampling. I also completed a detailed health history and medication list.
My test results were not a huge surprise.
Low stomach acid–this is fairly common with older people and affects how well food is digested
Adrenal insufficiency–they worked so hard they were worn out
Gut wall permeability–aka leaky gut, in which particles of food and anything else in the intestines can migrate through the cell wall separating the gut from the blood supply
With the exception of low stomach acid (hypochlorhydria), FM diagnoses are not recognized by more conservative healthcare practitioners. It’s not how they were trained in school and is so new that it is not a part of the emerging medical standard for treatment: Evidence-Based Medicine (EBM). FM hasn’t been around long enough to have much of a research base, but that didn’t worry me. My disease has no FDA-approved medications or treatments and no one has identified the cause, so there was really nothing to lose.
FM had no help for a cause of ME/CFS. However, it could help alleviate some of my symptoms. At this time, I was exhausted, had poor digestion, loose stools, and no body hair, to list a few of my signs (observable) and symptoms (felt by individual). Now that I had confirmed FM diagnoses for my self-diagnosed chronic conditions we got to work.
Sleep hygiene–the name reminds me of old Army videos about STDs, but it covers all the things that help you regulate and improve sleep patterns, including regular arising and bedtimes along with no screen time for two hours before sleep
Relaxation–already meditating about five days/week, I needed to increase this to every day and work on ways to relax during the day when I was off the cushion
Natural Light–I was to spend 10-15 minutes outdoors without sunglasses first thing after I got up as a way to help reset my circadian rhythm, which would help decrease my high cortisol (stress hormone) levels
Additional Salt–sea salt or Himalayan salt were recommended and I was to start adding salt to my food at the table and when cooking (I’d cooked with no added salt for over two decades.)
The new diet was strict.
NO fast food
NO processed food
NO ice cream, my “drug of choice” 🙁
NO toxins, like MSG or chemical sweeteners like Splenda(R) and NutraSweet(R), and any artificial coloring
NO inflammatory foods, like all forms of sugar, any fried foods, refined wheat flours, or saturated fats (except coconut oil)
Primarily plant foods, like antioxidant-rich leafy greens and colorful fruit
High-quality proteins, like cage-free eggs, fermented dairy, and grass-fed beef or organically fed and pastured chicken and pork
For blood sugar balance, I was to do no fasting, eat complex carbs and have something to provide energy (protein) at supper. I was to take Betaine HCL, to boost stomach acid, and digestive enzymes. Additionally, I wrote down everything that went into my mouth to help me identify any possible triggers for my issues with bloating, diarrhea, constipation, and heartburn.
To better regulate and reset my HPA axis, I was prescribed two hormones: DHEA and pregnenolone, a B vitamin cocktail to increase ATP (cell energy) production, and other proprietary vitamin products to help the adrenals recover. Both DHEA and pregnenolone are hormones produced by the adrenal glands from cholesterol. They have a number of beneficial effects, including memory improvement and reducing stress-related fatigue. Pregnenolone is the precursor to DHEA, the sex hormones progesterone, testosterone, and estrogen, and cortisol. (Source)
After six months of this regimen, I was sleeping better, had more energy and the hair on my arms and legs was coming back. (Body hair started disappearing about three years into this damn disease along with my lunas, the half moons at the base of the nail.)
Even though I saw a dramatic improvement with FM, I couldn’t afford to continue. The consultation fee, medication purchase, and tests cost well over $1,000. I discussed this with my FM practitioner and she pointed me in the next direction–candida. (Cue scary music)
Reviewing my stool sample results, I saw the microbiome was dominated by lactobacillus organisms and Candida other than the dreaded C.albicans. The cause of Lactobacillus domination was easy to identify–I was drinking 16-20 ounces of dairy kefir and 12-18 ounces of kombucha daily, along with an occasional fermented vegetable.
I didn’t know much about candidiasis (Candida infection), except for C.albicans which can cause exhaustion, vaginal infections, cravings for sweets, a white tongue, brain fog, loss of libido, joint pain, and a weakened immune system. (Source) I dug into the literature and found that there are many more types of candida than problem-causing albicans.
C.albicans is part of the normal flora of the mucous membranes, respiratory, gastrointestinal and genital tract in women. It only becomes an issue when the balance of normal flora is out of control. C.albicans can also cause problems when it colonizes damp areas of skin, for example under large breasts or fat folds. (Source)
I decided to start my candida species treatment with probiotics that had a different profile from the Lactobacillus species in my fermented drinks and food. Specifically, I was looking for Bifidobacteria and Firmicutes. I found I needed two probiotics to obtain the specific strains of bacteria I wanted.
After a month on both probiotics, the digestive enzymes, and Betaine HCL, my stools firmed up, my bellyaches went away and so did the heartburn. Cautiously, I stopped the BioSchwartz probiotic and was a bit more lax with Betaine and digestive enzymes–only using them at suppertime when I had my large meal of the day. (Your main meal should be at the midpoint of the day but that schedule just doesn’t work out when you have a 69-year-old husband who has always eaten his big meal at night. I cause so many changes to our lifestyle that I try to accommodate his preferences whenever possible.) Currently, I take the Zenwise Labs probiotic for a week each month to keep my microbiome healthy and Betaine with digestive enzymes whenever I have a large meal.
If you want me to go into more depth on these or any other issues or if I’m overwhelming you with too much information, please let me know by commenting.
Besides eating real food, not processed, getting a regular full body massage and consuming probiotic beverages like dairy kefir and kombucha the single thing that made the most difference in my recovery from ME/CFS was a video program. No, nothing on TV; we haven’t had a TV set in the house since 2010. Instead, the program I’m talking about was devised and developed by an amazing Australian engineer who had this damn disease and suffered through all the ups and downs in health and emotional status.
Like all of us, he went from doctor to doctor, and from one alternative health practitioner to another and spent lots of money on visits, medications, and supplements. Since the dawn of antibiotics, we have developed the belief that a doctor can cure us. Yet, people with ME/CFS know that we cannot be cured (although many of us still cling to hope).
Dan Neuffer put his logical engineer’s mind to learning all he could about the disease. After much study, he decided himself (because no one was talking about it publically at that time) that a breakdown of the autonomic nervous system (ANS) was the root of all the problems we have. In addition to ME/CFS, he includes fibromyalgia, electromagnetic and multiple chemical sensitivities as caused by a broken ANS. Dan learned that healing from illness or injury takes time, but can be accelerated through good nutrition and adequate rest and relaxation.He found that although there is no magic bullet, there is a clear path to recovery.
In his book, CFS Unraveled, Dan laid out his hypothesis that the countless (seemingly) symptoms we experience all stem from a faulty ANS. He also found that treating problems in isolation doesn’t work. Neither does treating secondary problems alone. He realized people with these conditions must treat the root cause, treat in the correct order and find their own personal triggers.
Realizing most people will need more coaching than the book provides, Dan developed a robust, comprehensive program that can take a person with the ME/CFS, fibro, EMS and MCS constellation of symptoms all the way through to recovery. He calls it ANS Rewire since that, literally, is what is done during the course of the program. The program’s core training is rolled out in daily videos for 6 weeks with more focused lessons during the following months. I found the structure of the lessons and the way the program is delivered to be easy to accomplish and, at the same time, beneficial and appealing to my medical background.
You can tell immediately just by looking at the site that Dan goes above and beyond when it comes to helping folks with our disease(s) recover. After laying out the science behind ANS-related symptoms, Dan delves into brain training, physical strategies, supporting strategies and tools we can use to help accomplish our goals.
Although I heartily endorse Dan’s work, I am not related by birth or marriage and do not receive payment for referrals to his ANS Rewire recovery program.