“It’s an alp to climb, to see if we can combat this all with state of mind”
What do we know about Donna thus far? We know she was a very athletic mother and journalist before waking up one day paralyzed with a bout of Guillain-Barre syndrome. We know that she partially recovered, but that a more debilitating attack left her temporarily paralyzed again. We know she has a pacemaker, a bleeding disorder, thyroid problems, slipped discs, and experiences severe fatigue and pain. We know her genetics and probably her father’s early death loaded the gun, so to speak, that took out her immune system.
We know that when she gets to the landing of the stairs in their house she often has to rest. We know her legs feel as ‘alive as driftwood’, that she regularly experiences fevers and that this former athlete now greatly fears her body – and that blocking out those fears and focusing on more positive aspects of her life is a real struggle.
We know that Donna, under the guidance of an MD with an integrative health focus is going to include two practices, meditation and yoga, and acupuncture over the next years to see if she can reclaim some joy in her life and become healthier as well. Before she does that, though, her doctor is going to establish her physiological baseline, and that’s what we’re going to learn about now.
Seventeen vials of blood and three saliva swabs later Donna gets the news. Her white blood cell count is quite low (2,000, while normal is 5-10,000) and her lymphocyte numbers are numbingly low (20, and normal is 120-300). Her red blood cells are enlarged, and they’re streaming out of her blood marrow at a higher than normal speed.
Her iron levels are less than half of what they should be (hers is 20, normal is 50-70). Her low ferritin levels (hers is 4, normal is 10-300) indicates that she’s not storing what little iron is present. Her low complement levels suggest that her immune system has run out of gas trying to fight off an infection.
While significant parts of her immune system are tanking, her almost-off-the-charts high salivary cortisol levels indicates her stress response is going gangbusters. Two inflammatory cytokines (Il-6, IL-2) are moderately high and her ANA count is slightly positive.
Putting it all together Dr. Rowland-Seymour suggests that some unidentified autoimmune process is causing her bone marrow to produce blood cells less efficiently than it should.
The blood tests were just prelude. Now comes the physical exam.
Donna now has a cornucopia of diagnoses. She’s literally been “held together” by the medical profession.
Her vasovagal syncope is being treated by a pacemaker. Her thyroiditis has been taken care of by thyroid medication. The nerve and muscle damage and spasms from her Guillain-Barre Syndrome attacks are in the physical therapist’s hands now.
That damage is why this former athlete sometimes needs to hang onto people to get up, and can’t put one foot directly in front of the other without falling. She would fail a typical sobriety test given by a cop.
It’s why working out one set of muscles (working out as in walking on her toes in the doctor’s office) leaves her muscles feeling rock hard and sore the next day. Any exercise quickly overloads the remaining nerve fibers and the muscles they’re connected to, leaving the muscles in lock-down mode. That nerve damage may also be the source of the severe exercise intolerance which can leave her exhausted from small tasks. (Is nerve damage causing the same problem for some people with ME/CFS and FM?)
Her small fiber neuropathy that left her with dead feeling hands and feet is being treated by, well, nothing at all. She has pancytopenia (those low blood cell counts). Her bladder and pelvic floor spasms are treated by exercise, stretching, and physical therapy.
She has Von Willebrand disease – a coagulation abnormality.
Her three herniated discs and injured sacrum, pelvis, and sacroiliac joint don’t seem to fit in with these immune and nervous system problems, but in a way they do. They occurred when her Labrador retriever pulled a weakened Donna down the steps. Would that have happened to our former 60 lap pool swimmer? Probably not. Chalk the back injury up to an indirect, delayed effect of damage done to her nerves by Guillain-Barre syndrome. Weekly physical therapy sessions treat those injured discs.
Damage to the nerve endings in her gut from the second Guillain-Barre Syndrome attack affected her gut motility leading to intestinal infections and a year of antibiotics. The IBS she was left with is only partially dealt with by a special diet. Her gut pain is still debilitating at times.
There are also the year-long bouts of 100 degrees or more fever. There’s the constant, burning, itching skin rashes that keep her up at night, and the facial eczema that sometimes spreads to her hands and arms. She doesn’t dare use immunomodulatory creams for fear of how they’ll modulate her whacked out immune system.
Her joint pain causes her to use braces when she types, and there are also headaches and insomnia.
With her fatigue, joint, gut, back and pelvic pain, dead feeling hands and feet, burning itching skin, and sometimes fevers, Donna is hurting in seemingly every way possible. The techniques she’s going to try over the next year seem puny indeed compared to all the problems she‘s confronting. They seem more like walking sticks than the climbing ropes and carabiners she needs to climb that ‘alp’ of problems.
Both fear and hope drive her. After ten years on the medical treadmill she’s run out of better options, and she has her kids’ experience of their sick mom to think about. If the adverse childhood event studies are correct, she fears that the trauma of seeing their mother so sick could set them up for problems later on. There has to be a better way.
- Coming up next : Donna gets to work
- Check out other blogs in Last Best Cure series here.
Over the next year Donna is going to engage in three approaches designed to turn her mindset from fatigue, frustration, worry, and pain towards contentment and joy and see what happens to her physiology, her mood, her symptoms, and how functional she is.
The three approaches she’ll take are meditation, yoga, and acupuncture. She’ll keep taking her current supplements and follow her current diet (gluten, dairy, and additive free diet emphasizing vegetables and fruits.)
- Check out The Last Best Cure Blog Series
She is the author of the The Last Best Cure, The Autoimmune Epidemic, Does Anybody Else Look Like Me? A Parent’s Guide to Raising Multiracial Children as well as a contributor to the Andrew Weil Integrative Medicine Library book, Integrative Gastroenterology, (Oxford University Press, April 2010).
Among others she is the recipient of the 2010 National Health Information Award, the 2012 international AESKU Award from the International Congress on Autoimmunity for her lifetime contribution to autoimmune disease research with the book The Autoimmune Epidemic.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.