Cancer and Autoimmunity, 1st Edition

(The Preface to this book is available for free download.)

New Blog Feature: In the Research


Announcing the debut of a new feature that will bring to you the harvest from my gleaning the fields of research associated with autoimmune disease, obstructive sleep apnea, chronic pain, special nutrition needs, and other aspects of the illness-disability experience.

Links will be provided to openly published PDF copies of articles from scientific and medical journals, as well as to the website URLs of reliable information sources (academia, government agencies, well-known medical organizations and treatment centers). These links will be provided in text and attached to a relevant icon:

Personal experience, re-blogs, “Press This” posts and recipes will continue between changes in research topics.


Neanderthals Take No Prisoners.

Another autoimmune disease diagnosis.

The new pain began in the late spring, with a sore spot on my left back, between the armpit and the shoulder blade. In a few weeks it had spread over the top of the left shoulder and into the left side of my neck. By the end of the summer it was bilateral, forming a cape-like cloak of severe pain and weakness from the occipital region of my scalp, around my neck, halfway down my chest and upper back, and extending to a little past the elbows. I was completely incapacitated: I could not even raise my arms to waist height without being reduced to tears from the sheer agony.

I suspected another autoimmune disease: polymyalgia rheumatica (PMR), or polymyositis. My primary care doctor ordered a blood test to check my erythrocyte sedimentation rate. That came back elevated, a good marker for PMR. A trial of a moderate dose of prednisone began to relieve symptoms in five days (I took longer than most people, who usually respond within 72 hours).

So now I am on a steroid, for the foreseeable future – a drug regimen I had hoped to avoid, because of its large number of adverse side effects (including a fatal adrenal condition). Sometimes the anti-cancer drug methotrexate (MTX) is substituted so that the steroid can be tapered off somewhat, but MTX also carries with it its own risks of bad side effects. But when the problem is such an overwhelming autoimmune attack, the only way to stop the body’s self-destruct insanity is to suppress the immune system, allowing the inflammation and pain to subside.

The upside of the prednisone is that it functions in a way similar to how a broad-spectrum antibiotic works against a multitude of susceptible germs: the steroid reduces my overall antibody burden. In the case of one of the anti-thyroid antibodies, my level went down from nearly 11,000 (yes, that’s eleven thousand!) to something over 1,500 (still far above “normal”). At least as far as autoimmune hypothyroidism goes, that’s a good thing for quality of life: research into the effect of performing thyroidectomies on people with Hashimoto’s who were euthyroid from medical therapy but were still miserable with symptoms, after the surgery, the patients finally reported improvement in symptoms, which was attributed to a large decrease in circulating antibodies.

I spent some time on the internet trying to find good illustrations of the kind of pain and weakness I experienced, but nothing I could find was accurate. None of these pictures can do justice to the horrific torment that accompanied my losing the use of both arms. According to the above diagram, PMR can also affect the groin, hips and lower back, and while I do have pelvic girdle pain, it’s unilateral (on the left only), and it’s in a different pattern that is characteristic of the sacroiliac joint fracture I suffered many years ago. If I had any PMR involvement in that area, it was slight, because after a month on the steroid, I have only a slight improvement in stiffness in my lower back, while my upper body has made significant gains. The giant cell arteritis that’s mentioned in the blue illustration is diagnosed with a biopsy; but I currently don’t have symptoms of that complication.

The triumph of the Cro-Magnon over the Neanderthal, in which Neanderthal males were eliminated so the invading “early modern” humans could breed with the females, was a Pyrrhic victory. Neanderthals ceased to exist as a distinct people, but the vengeful immune system heritage they bequeathed to the hybrids and their descendants lives on, with devastating effect.



Monitor CPAP with OSCAR!

Open source software displays all the details!

I recently downloaded OSCAR – Open Source CPAP Analysis Reporter – and I couldn’t be more pleased. Now I have the complete record of everything measured by Darth CPAP, covering nearly all of the time I’ve been using a continuous positive airway pressure machine. (The first four months were recorded by a different machine from a different DME company, and they didn’t put an SD card into it, so the only record I have of that time is an abbreviated printout.)

OSCAR is available for several platforms, and their download page lists a baker’s dozen of human languages, so it serves the international community of CPAP users.

Not every user is going to want as much detail about the obstructive sleep apnea that afflicts them, but I’m a retired Registered Nurse, and have an inquiring mind that wants to know it all. When I had asked about getting complete metrics at my last (annual) sleep medicine appointment, I was told it couldn’t be done, but because I had been programming military computers before the last two generations of computer users were gleams in their daddies’ eyes, I knew better. If there’s code written for anything, some motivated and dedicated geek will find a way to crack it. The motivation for cracking CPAP code came to computer programmers who also have sleep apnea.

OSCAR is a tremendous gift from the hardworking people who wrote the code over several years, after various attempts by others to decipher CPAP secrets were abandoned. Now I can better track the things that either worsen or improve my breathing. This is health care empowerment on a truly grand scale.

Thank you, OSCAR developers (and all who came before you to blaze the trail) from a Very Happy CPAPer!