After talking to my father this weekend, it occurred to me that people who don’t know the background of my Year From Hell may think it’s ludicrous to try solving my problems with a bunch of supplements. There are connotations that I am leaving my treatment in the hands of quacks, that I don’t believe in science or that I have abandoned traditional allopathic remedies. Nothing could be farther from the truth.
I spent almost 39 years never taking a vitamin or a supplement of any kind. Except Emergen-C packets. I like to get vitamin C in me once in a while. I never took a multivitamin or fish oil or B-complex, even though I was told it might help my terrible periods. I never took a probiotic through all my doses of antibiotics over the years because I don’t have stomach or gut problems. I’m good, my body is a rock, I’m impervious to illness. I never took calcium, even when they told me I had pretty bad osteopenia ~ bordering on osteoporosis ~ in my hip at the age of 37. It just wasn’t part of my daily routine. I used to joke that I never get sick. I get the random attacks of anaphylactic shock and random collapses from low blood pressure, but, otherwise, I’m fine.
After the initial months of seeing my PCP repeatedly for the first diagnostic tests, I then saw an endocrinologist multiple times, a gastroenterologist multiple times, two different infectious disease specialists at two different clinics, an allergy specialist (listed as one of the top doctors in the city) multiple times, a rheumatologist (listed as one of the top doctors in the city) once, two physical therapists multiple times, a massage therapist multiple times, a mindfullness-based therapist multiple times, a psychotherapist once, a naturopathic doctor once, an optometrist once, an ENT doctor once, a pain management specialist once, a chronic fatigue specialist once and I’m sure I’m forgetting someone somewhere. I also have an appointment for my first acupuncture session this week and a consultation at the sleep study clinic (which I think I will have to cancel because I just found out it can cost $600+ after insurance and I have no income).
I was never given antibiotics, I was never given antivirals, I was never physically palpated, no one touched the tender muscle spots or suggested an EMG, no one took a stool sample (until this month), no one suggested a colonoscopy, no one wanted to take a second look at the MRI I had done a few years ago of my neck and head, no one suggested a physical therapist (I did that on my own), and no one seems to want to talk about M.E. or commit to that diagnosis when I’m 95% sure that it is correct.
I’ve spent 6 months researching infectious disease and chronic illness and endocrine, immune system, and neurological disorders. I know more than I’ve ever wanted to know about what can go wrong with us, what can invade us, what can infect us. If you don’t have a phobia and feel the need to develop one, just go to the listings of illness and disease on your state’s department of health website. That shit is right outside your door. Or just listen to the news. Could I have West Nile virus? Legionnaire’s disease? Whooping cough? MRSA? Necrotizing fasciitis? Swine flu? Salmonella poisoning? But that’s just what’s in the news. What I’ve really been wondering is, do I have M.S.? Or tick-borne relapsing fever? Malaria? Fibromyalgia? Rocky Mountain spotted fever? Polymyalgia rheumatica? Parkinson’s? I am told all obvious causes have been ruled out, but I can’t help thinking about my two toxic multinodular goiters which had killed my thyroid and were killing me (yes, the endocrinologists said that, if left untreated, my condition would kill me in the not-too-distant future) were not discovered for years because the blood tests were only a little off or only slightly low. Don’t trust the lab ranges! If your test results are low or high but within the “normal” range, they can still indicate a problem.
Now, ready? Here are the tests I HAVE had done:
MALARIA SCREEN (3 times, because the first test was positive)
COMPREHENSIVE METABOLIC PANEL
CBC, DIFF (three times)
CRP, HIGH SENSITIVITY (multiple times)
CULTURE:BACT – BLOOD
RHEUMATOID FACTOR (twice)
ANA REFLEX COMP
ANA PATTERN BY IF (is that the same thing?)
ABS TO NUCLEAR AGS
THYROID STIMULATING HORMONE
QUANTIFERON TB TEST
CT SCAN OF CHEST, ABDOMEN AND PELVIS W/ CONTRAST
ULTRASOUND ABDOMEN BACK WALL
ANTI tTRANSGLUTAMINASE, IgA
TTG AB IgA (SAME THING?)
ALLERGEN PANEL (BLOOD TETS): IgA
ALLERGEN PANEL: SKIN PRICK TESTS
BLOOD EXAMINED FOR THE FOLLOWING PARASITES:
MALARIA, BABESIA, TRYPANOSOMES, MICROFILARIA, BORRELIA
FOLLICLE STIMULATING HORMONE LEVEL
LYME DISEASE (TWICE)
CYTOLOMEGA VIRUS (CMV)
EPSTEIN-BARR VIRUS (EBV)
CPK CARDIAC MARKERS
(updated to 09/13/2012)
Yes, they were all negative except EBV, to which 95% of the planet has been exposed, apparently. On paper, I look great, which is why, after twenty years of working myself to the bone in this country, I won’t qualify for social security disability. I want nothing more than to work. They list hypoglycemia and thyroid gland disorders under the listings of disorders that can qualify someone for disability. I have both of those things, but they are manageable, but I would have a better chance of getting disability applying under those disorders than ME or CFS ~ the disorder that is actually disabling! They list Sjogren syndrome and anxiety-related illness on the SS website, both of which I probably have or could be diagnosed with if I just answered the doctors’ questions slightly differently.
In sum, I did not jump to licorice extract, borage oil and a no-grain diet to solve my problems. I have done everything I can possibly think of doing besides doping myself up with pain killers and anti-anxiety and sleeping pills, which is all most doctors really want me to do. And, at this point, I would try anything. I would drink a witch’s brew of eye of newt and toe of frog, wool of bat and tongue of dog, adder’s fork, and blind-worm’s sting, lizard’s leg, and howlet’s wing…
Any ingredients I’ve missed for my hell-broth, please let me know!
Okay, maybe not tongue of dog… 😉
Totally understand. I was totally mainstream before this. Trusted the doctors completely, and very rarely went anyway because I tended to figure things would heal themselves on their own eventually anyway.
And those tests look far too familiar. 🙂
But I’ve realized that most doctors really don’t have any interest in looking for things they can’t immediately see or that aren’t immediately life threatening or that don’t come with an easy and well-established answer. They won’t find out that your intracellular magnesium may be quite low despite your serum magnesium coming back in the normal range, or that consequently calcium supplements might be behind your headaches. But we can find that, if we’re lucky and look hard enough. Or have great husbands.
I take a pile of well-researched and carefully-chosen supplements now. I’m gluten-free and caesin-free, etc. But it has helped. It’s not a cure by any stretch, but I’m a lot less miserable than I was a year ago, and at least parts of that are the result of those interventions.
What else is a person supposed to do when “mainstream” medicine has no hope for them?
I hate the association and assumptions that go along with that sometimes, though. Like I must also go home and pray to fairy crystals because I take supplements and herbs. Because somehow a person can’t be scientifically-minded and also acknowledge that vitamins, minerals, and foods do have some scientific impact.