All eight of Health Rising’s recent recovery stories have featured different approaches thus far and so it goes with Amber’s story. Everything is different with Amber – she is different – and her pathway to wellness is different. Amber’s is the first story to prominently feature mast cell activation syndrome (MCAS). She was also able to exercise vigorously for many years despite suffering from a wide array of ME/CFS-like symptoms. Like Jason, her relief came only after she’d embraced an alternative health approach to these diseases. It did not come quickly, but over time it did happen.

• My Recovery Journey from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) – Patrick’s multifaceted neuroplasticity, pacing, drug, and alternative health journey.
• A Patch On It: Melissa’s Amazing Cerebral Spinal Fluid Leak ME/CFS Recovery Story – cerebral spinal fluid patch.
• Adam’s BCG Vaccination Chronic Fatigue Syndrome (ME/CFS) Recovery Story – BCG vaccine.
• Can the Japanese Encephalitis Vaccine Reduce Symptoms of Long COVID? – vaccine.
• Lucie’s Surprisingly Simple Chronic Fatigue Syndrome (ME/CFS) Recovery Story – anti-inflammatory and rehydration.
• Up from the Ashes: James’s Severe ME/CFS Recovery/Recovering Story – CIRS-based treatment approach.
• A Rapamycin Resurgence: An MD Moves the Needle on his ME/CFS – Rapamycin.
• Jason’s Eclectic Mix of Treatments Returns Him to Near Normal Health After 16 Years with ME/CFS – alternative medicine treatments.

Amber’s story is taken from her account in “Mast Cells United: A Holistic Approach to Mast Cell Activation“. If you read the recent blog, “The Strange Syndrome: MCAS, ME/CFS, Fibromyalgia, and Long COVID”, you’ve heard the first part of Amber’s story and might want to skip this first section and go to:

Amber Walker looked like the picture of health when she collapsed after a marathon, but this competitive swimmer, marathoner and world traveler wasn’t in good shape at all. In fact, she was already pretty much of a mess and had been for quite some time.

Her health problems occurred early. Digestive issues; abdominal pain; constipation; hives; rashes (she was diagnosed with chronic urticaria and took daily antihistamines); extremely sensitive skin; dermatographia; asthma; allergic reactions to dogs, horses, hamsters, rabbits, and cats, foods (pine nuts, chocolate, shellfish); repeated sinus infections (countless antibiotics); Raynaud’s disease: they all showed up pretty early.

Abdominal pains were a constant for her entire life, but in her teens, she began having abdominal attacks – intense periods of abdominal pain that felt like glass was cutting her insides – which left her experiencing mental confusion, anxiety, and even delirium, and sometimes left her unable to eat or drink anything for days. Numerous diets had no effect.

Next, a car accident was followed by swollen neck and groin lymph nodes, fatigue, and iron-deficiency anemia. She had her first, but not nearly last, experience with anaphylactic shock and a trip to the hospital after being stung by a yellow jacket. Then came chest pain, heart palpitations, low blood pressure, near-fainting episodes, urinary tract infections, severe cold intolerance and occasional heat intolerance, and constant sinus infections.

All this while being a competitive swimmer at the college level – training 2-4 hours a day. She was living proof that your immune system can be a mess without impairing one’s ability to exercise. After her eardrum ruptured, sending blood and pus flying during an airplane flight – she swam the next day. After she found herself gasping for air during a slow warmup, she checked herself into an urgent care clinic and found she had pneumonia. She recovered enough to enter her (last) swimming meet – but her lungs were never the same.

Despite having good oral hygiene, her gums receded to the point where her front teeth became loose and she had to have a gum grafting procedure. (Unfortunately, she couldn’t tolerate the pain medication – something that had started long before.)

In her 20s, she began experiencing numbness and tingling and episodes of weakness and vision, and problems with balance and vertigo. Sometimes they came for a while and then mysteriously disappeared. Brittle nails, white coating on her tongue, hair loss, night sweats, anxiety and depression, jaw pain, TMJ, frequent joint subluxations, IT band pain, knee meniscus problems, ankle and wrist sprains, plantar fasciitis – they all added up. A car accident left her with severe neck instability. In an odd accident, she fractured her tailbone while doing a jump into the river that her friends accomplished easily. (People with MCAS appear to be at increased risk of osteoporosis.)

Over time, she saw countless doctors… She also completed graduate school and traveled and worked in Peru, picked up some parasitic infections, was exposed to bed bugs, and flea infestations, was attacked by wild dogs, and was even kidnapped. Coming back home, her abdominal attacks worsened – and then she went on a trip to Australia and the far east, was bitten by a monkey, endured a series of rabies shots, and then ran the marathon and collapsed.

The Real Trouble Begins

When we left Amber, she’d crashed badly after making it (barely) through the Boston marathon. She subsequently left her job and moved to Alaska. She was in her early 30s and doing poorly. Her fevers, brain fog, abdominal pain, and night sweats reached new highs. Her Raynaud’s “attacks”, which caused numbness – and interfered with her ability to work as a physical therapist – were happening over 10x a day.

Neuropsychiatric symptoms (obsessions with rules/routines, autism-like behaviors, the need to do repetitive movements to soothe herself) and poor tolerance of stimuli (bright lights, strong sounds) started showing up. She was diagnosed with attention deficit hyperactivity disorder (ADHD), but meds for it and anxiety/depression did not help. Still, she was able to “power through” her symptoms for months at a time before crashing.

She saw doctor after doctor (she estimates over 100 specialists), many of whom told her it was all due to stress. She apparently doggedly plowed through the rejections, certain that something was wrong and that in the end, she would find it.

All through this, she maintained a veneer of wellness with her family, friends, and workmates. Certain that if she didn’t “use it”, she would “lose it”, she was determined to remain active (she was determined, period!): she kept running and engaging in physical exercise as much as she could – even as she knew it was making her symptoms worse.

At the age of 31, after a bad reaction to a flu shot during a time of high stress, she imploded physically. Now she was unable to exercise and even had trouble standing for short periods of time. (She would surely meet the criteria for ME/CFS now). Dramatic blood pressure and heart rate fluctuations indicated she had dysautonomia. A blood test indicated she had rheumatoid arthritis  – and then a couple of months later, indicated she didn’t.

Her worsening gut symptoms resulted in an endoscopy, CT scan, and laparoscopy – all of which, to her mortification, were normal. She cut her work down to four, then three, then two days, and then finally quit physical therapy altogether, stopped coaching swimming, and then helped to open a paddleboarding company that allowed her to be outside.

Resting had brought her relief earlier but not this time. Her gastroenterologist, having exhausted his bag of tricks, told her there was nothing medically wrong with her, that gas was causing her extreme gut pain, and that her other symptoms were caused by, you guessed it, stress.

Antivenom therapy for her extreme reaction to bee stings amped up her symptoms considerably, left her with sensitivity to chemicals in the environment, and caused her to go into anaphylactic shock many times. Wanting to be able to enjoy the outdoors without possibly dying, she gutted it out for 9 miserable months.

A colonoscopy showed signs of Crohn’s and she was put on steroids, which worked for the first month and then didn’t. After a move to Seattle, a new GI specialist told her she didn’t have Crohn’s and more GI imaging revealed nothing. Meanwhile, her blood pressure kept suddenly plummeting (80/40) leaving her with multiple near-fainting episodes per day and her postural orthostatic tachycardia (POTS) (racing heart when standing or sitting) increased significantly. Over time, she found that any change in posture could produce symptoms.  At times her heart rate would increase to 130-50 bpm when she changed position during sleep.

Adrenaline rushes from formerly innocuous things like a door shutting, or someone coming up to her desk, or falling asleep at night, left her on edge, and unable to relax or sleep well.

Her environmental allergies/sensitivities exploded. As sick as she was, she had to move several times over the course of six months when she reacted to mold or to the chemicals in her dwellings. She began reacting to her boyfriend’s car, perfumes, cigarette smoke, foods, etc.

On the plus side, she noted that antihistamines reduced her anxiety levels. On the downside, her hives were getting worse, requiring more and more antihistamines every day. Plus, she was experiencing more flushing, tinnitus, severe grogginess (bordering on narcolepsy), heartburn, hair loss, acne, and eczema (!).

Her list of symptoms kept growing and growing, but she was about to experience her first real turnaround in her health. With a new insurance plan, she was able to see a functional medicine doctor.

A Functional Medicine Turnaround

Her functional MD proposed that all her symptoms might be caused by histamine intolerance; e.g. mast cell activation syndrome (MCAS). A low MCAS diet didn’t do much, but when she – unbeknownst to her doctor – decided to provoke her system with some high histamine foods – her symptoms flared big time, including 3 episodes of anaphylactic shock.

Further testing showed that she had small intestinal bowel overgrowth (SIBO), high liver enzymes, extremely elevated prostaglandin D2 (MCAS), and high mast cell levels in her gut (biopsy). High levels of antihistamines, a leukotriene antagonist, ketotifen, and low-dose naltrexone helped stabilize her (except for her gut issues) for the first time in years. She was also diagnosed with Ehlers-Danlos syndrome.

Her fatigue, however, remained unrelenting.  When her SIBO did not improve, further testing revealed she had four parasites.  Cholestyramine, however, stabilized her further and eliminated her POTS symptoms, shortness of breath, and heart palpitations.

Retrenchment

Throughout all this, she was quite busy – working on this book, working full-time on administrative tasks for her busy business, and giving paddleboard lessons while suffering from severe fatigue, environmental allergies, abdominal pain, migraines, etc.  By the middle of summer 2017, she was back to essentially being homebound.

Next, she tested positive for Lyme and several other bacterial co-infections. (She doesn’t say what tests she employed for these and the parasites). Finally, with her health still in the pits, she cut out everything she could – her business, writing, photography – in order to concentrate on healing, and left Alaska. A brief stay in Washington – which left her living in a tent because of her sensitivity to mold – made it clear that it wasn’t an option and she moved to Arizona.

Abdominal Breakthrough

There, while plowing through patient forums, she finally discovered the root of her horrific abdominal symptoms – hereditary angioedema (HAE). HAE causes the blood vessels to leak, causing pressure in her abdominal cavity and resulting in severe pain.

It turned out that because people with HAE lack the enzyme to break down bradykinin – a chemical released by mast cells – HAE and MCAS can feed on each other. People with HAE have a strikingly higher rate of mastocytosis.

Getting the diagnosis was great – paying for the medication ($100,000/month!) – was something else. Insurance ended up paying for 3 treatments a month – significantly fewer than she needed – but at least she had some relief and finally an answer to her gut pain.

Naturopathic Rebound

Testing with a new naturopathic doctor in Arizona revealed she had both active and chronic Epstein-Barr virus infection, heavy metal toxicity, hormonal problems, a high level of inflammation, and Hashimoto’s thyroiditis.

She was put on thyroid medication and a long list of supplements. She started juicing twice daily, further improved her diet, began very light physical exercise, yoga,  breathing exercises, meditation, and regular IV treatments, including ozone. She was rigorous about pacing and healing. Within a couple of months, she was able to cut her mast cell medications in half, her anxiety lessened, and she started seeing some new hairline growth for the first time in 5 years.

Over time she added in colonic enemas, had sessions with a sound healer, attended psychotherapy sessions, and employed techniques designed to repair her parasympathetic nervous system.

Nothing had touched her HAE, though, and her debilitating episodes continued to increase. Plus, her headaches worsened, she was experiencing neck pain and stiffness, had difficulty swallowing, blurred vision, feelings of head pressure, and brain fog.

Then in the spring of 2018, a large ovarian cyst ruptured – leaving her feeling better (!) – reinforcing the idea that estrogen played a big role in her symptoms. Her HAE attacks, while frequent, diminished dramatically. Now she was able to go on walks up nearby mountains without a major issue.

CranioBiotic Technique Breakthrough in Colorado 

She moved to Colorado. It took her three tries to find a house she could tolerate, but once there, her health improved. A new magnesium supplement helped with her gut motility. Dealing with viral and bacterial infections was important. Through trial and error, she’d found a stable regimen of supplements that helped: ketotifen, magnesium, soil-based probiotics, estrogen-reducing supplements, selenomethionine, CBD oil, GI Detox plus, antioxidants, mushroom adaptogens, and vitamin/minerals.

Her progress had been achingly slow at times, but it was real. Then she found something called the CranioBiotic Technique (CBT) that dramatically improved her health. CranioBiotic Technique was developed by Dr. Tony Smith, a chiropractor, who after a severe allergic reaction to a prescription that resulted in severe joint pain, became disabled and over time developed this technique.

The technique uses “muscle response testing’ (also known as applied kinesiology) a controversial technique that claims to be able to uncover hidden “health stressors” such as allergies, pathogens, toxins, and physiological dysfunctions. The few studies that have been done on it have apparently not been successful, but the technique is apparently widely used in the chiropractic profession and has been around for a long time. (I experienced it in the late 1970s).

It involves briefly exposing someone to a substance by putting it in their mouth or even their hand and then testing the strength of their muscles, often by using an arm-pull-down test. Smith used the results of the test to gently stimulate “specific neurovascular “reflex points” on the head and upper body. This gentle stimulation then purportedly retrains the brain to deal with these issues.

Amber’s CranioBiotic evaluation concluded that her immune system was still trying to deal with an astounding number of infections (EBV, Lyme and coinfections, clostridium difficile, strep, staph, toxoplasmosis, mycoplasma, aspergillus, candida, protozoa infections, and other viruses (!)).

While eyebrows may raise at the technique and the number of infections it purportedly found, Amber found that the technique “dramatically improved” her health, including clearing up her chronic orthopedic inflammatory issues. It should be noted that she was trained in Western medicine, and her book “Mast Cells United” is littered with scientific citations. In the end, though, she went with what worked, and what worked for her was the CranioBiotic Technique.

As she learned how to do the technique, she found it improved the health of many others as well. Calling it the most “effective resource” she had yet come across, she put aside her predilection for evidence-based treatments (those that have received formal study – her book is loaded with scientific references). As she transitioned from being a physical therapist to a holistic practitioner, she embraced it and specifically noted its application for people with chronic fatigue syndrome (ME/CFS) and fibromyalgia.

By the end of the book, she was still dealing with environmental exposures and still had chronic symptoms but was exercising regularly, and was engaging in international travel again. She also founded the Origin Wellness clinic, which provides telehealth visits and is focused on people with “fibromyalgia, dysautonomia, mast cell activation disease, covid and vaccine complications, Ehlers-Danlos syndrome, migraine headaches, inflammation from mold, and chronic viral, gastrointestinal, and bacterial issues that influence immune system function.”

Takeaways

Amber demonstrated just how sick one can be – and have many of the hallmarks of ME/CFS/FM (fatigue, orthostatic intolerance, poor sleep, pain) – and still, for many years, be able to exercise (even as it induced PEM). She’s part of a large spectrum of intermixed illnesses (ME/CFS/FM, MCAS, long COVID,  POTS, EDS, IBS, post-Lyme disease, environmental illness) that have fluid boundaries.

Looking bac,k she saw some exposures and events that she believes helped to push her health over the edge:

• Her body did not do well with vaccines (rabies, flu)
• Physical traumas (car accidents, insect bites (yellow jackets/bees), animal attacks (monkey, dogs), parasites
• Environmental exposures (4 hours/day swimming in chlorinated water; living in water damaged buildings)
• Repeated antibiotic use and a normal, not-so-healthy American diet (until her mid-20s)
• Pushing herself in sports, work and lack of sleep.

Although she was trained in traditional medicine, it did not help at all – and made things worse by repeated assertions that she was healthy and her problems were all in her head. Except for the HAE diagnosis, Amber’s pathway to health (or near health) led straight through the alternative health (functional medicine, naturopaths) field and it ended up embracing an unusual and scientifically untested technique – CranioBiotic Technique.

The discovery that she had MCAS – in spades – led to several treatments that helped stabilize her condition and eliminated her POTS symptoms, shortness of breath, and heart palpitations. Mast cell treatments were, however, not nearly enough and she abandoned working in order to focus solely on getting better. While the discovery that hereditary angioedema (HAE) was causing her horrific abdominal attacks helped her, her other symptoms pretty much continued unabated.

Working with a naturopath boosted her health. Thyroid medication and a long list of supplements, plus further diet tweaks, including twice daily juicing), yoga, breathing exercises, meditation, and regular IV treatments including ozone allowed her to cut her mast cell medications in half, reduce her anxiety, and see new hairline growth.

Over time, she had slowly improved, but many symptoms were still present. CranioBiotic Technique, however, took her the rest of the way. By the time the book was published, she had not fully recovered but was back exercising and engaging in her passion – international travel. She became a certified CranioBiotic Technique practitioner and founded the Origin Wellness clinic which provides support for people with ME/CFS/FM, MCAS, POTS, and allied diseases.

Health Rising is not affiliated with Origin Wellness in any manner

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Amber’s story reflects another strong focus of Health Rising – recovery stories. It wasn’t that long ago that ME/CFS/FM was considered to be an irreparable illness that was immune to treatment. Largely through people providing their recovery stories we now know that it’s not true – that many people do, in fact, recover using a wide variety of means.

Health Risings Recovery/Recovering Story Section provides the details of over 70 recovery stories and more are popping up all the time. (We have at least 5-10 stories waiting to be published). If recovery stories are helpful to you please support Health Rising in a manner that’s appropriate for you.