Tag Archives: depression

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The tests I’ve had done and thoughts on allopathic versus naturopathic medicine.

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)

SED RATE

G6PD SCREEN

CRP, HIGH SENSITIVITY (multiple times)

COMPLETE URINALYSIS

PROTEIN ELECTROPHORESIS

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

T3

T4

PARATHYROID HORMONE

CORTISOL

EPINEPHRINE

NOREPINEPHRINE

DOPAMINE

METANEPHRINE

NORMETANEPHRINE

5-HIAA

VITAMIN D

CHEST X-RAY

QUANTIFERON TB TEST

CT SCAN OF CHEST, ABDOMEN AND PELVIS W/ CONTRAST

ULTRASOUND ABDOMEN BACK WALL

ZINC

VITAMIN B12

FERRITIN

HEPATITIS C

HEPATITIS B

HIV (TWICE)

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)

EHRLICHIA

CYTOLOMEGA VIRUS (CMV)

SPYHILIS

EPSTEIN-BARR VIRUS (EBV)

IBD SEROLOGY

CPK CARDIAC MARKERS

LIPID PANEL

LIVER PANEL

ELECTROLYTES

HLA B27

ESTIMATED GFR

C-REACTIVE PROTEIN

URIC ACID

CREATININE

(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!

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LDN Day 14… What if I never get better?

Sometimes I don’t think I’ll ever get better. If I believed that 100%, I don’t think I could keep going, but sometimes — maybe 3 or 4 times each week — I am hit by the thought that this illness might actually never go away. It hits me like a freight train. What if I can never do the things I want to do again? And my desires are pretty simple. I want to be able to sit and have dinner with my father, husband, sister and her boyfriend and not feel sick. I want to be able to engage in a conversation with my family (or to laugh — imagine!) for longer than an hour without feeling like death. I want my body to not get so chilled to the bone that I can barely form sentences — when everyone else is in tshirts. I want to be able to hug people and sit near people without being afraid that they are going to get me sick(er). Is that too much to ask? Is it too much to hope that I will one day be well enough to engage in those simple pleasures? It’s not like I want to climb mountains or deep sea dive or walk the Wall of China. I just want to be able to enjoy time with those I love.

Today I took it easy all day, stored my energy up so I could visit with my Dad this evening. I sat in the sun, letting it bake me, hoping it could scorch my very bones, heat my body up enough to keep my core smoldering into the evening… I meditated, felt pretty good…. Within half an hour of visiting with my family, the chill came on, then the headache, sore throat, nose started running, chest got tight… My nightly flu. I think I lasted two hours and then abruptly left. Thank god for my husband, I wouldn’t have been able to drive. I took a hot Epsom salt bath and I feel better, more stable, but I have to go straight to bed now. And I’m sad. It makes me so sad. All the people in my immediate family — Mother, Father, Brothers, Sister — are healthy. There may be things I don’t know, but, nothing major. My Dad is going to be 70 next month — he looks great. My Mom is going to be 68 in a few months — she is more physically active than I am. I had recurrent pneumonias as an infant and asthma as a toddler and an undiagnosed thyroid problem as an adult. Is that what set me up for this nonsense? Or is it my Type A, perfectionist, workaholic, control-freak personality, coupled with a high-stress, long-houred job, coupled with the fact that I never exercised, didn’t eat too well and never slept?

Genetic predisposition + unfortunate lifestyle + poor career choice + a brain that never shuts off = Myalgic Encephalomyelitis. Lucky me.

It’s been two weeks — why isn’t the low-dose naltrexone my miracle drug?

Almost forgot: Gratitude.
I am grateful for my amazing, brilliant, witty, intelligent, savvy, caring, supportive FAMILY. Lucky me (no sarcasm this time).

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March, 2012: 4 months sick. An excerpt from my diary.

Muscles pumped full of lead. No, heavier: Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, about to strain, buckle, seize up with the slightest movement. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest.

Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Internal tremors making me feel unstable.

Chills. Bone-chills. Shivering, unable to talk, nose going to shrivel and fall off, can’t breathe, freezing feet going to shatter into pieces, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.

Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched.

And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the toilet, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think. It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic.

I just keep thinking, I don’t want to die.

Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before.

I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Sleep deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions.

To live life. To not die.

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LDN Day 12… Let’s talk about drugs, baby.

Last night I spent 10 hours in bed and got 7 1/2 hours of sleep. Not bad. My Zeo says I woke up 8 times in the night, which I hardly noticed – it was so much better than my usual 15 or 16 times. This is the longest stretch of over-7-hours-of-sleep-nights I’ve had in as long as I can remember. Ever? And I feel stronger. Is it the low-dose naltrexone? I am still skeptical. I started keeping my thyroid medication next to my bed, so when I wake at 6 or 7 or 8am, I take it and then tell myself I can go back to sleep for an hour. It has really helped. I have to take my thyroid hormones on an empty stomach and wait an hour before eating or taking other supplements, so it has always been the thing that gets me out of bed (when I’m not working).

Yesterday, was uneventful symptom-wise, which is wonderful. I did a bunch of housework and then relaxed. I was tired, but not exhausted. I had muscle aches, but nothing severe. My main concerns were: the painful tingling in my left thumb, my itchy, clogged ears, my neck pain, my mood, and my body’s complete lack of effective thermoregulation. That is nothing, believe me. There have been so many months when I would say, my main concern is not dying, so this is great. And I don’t want to jinx it by getting too excited. I still have ridiculous constipation and the breakout on my chest, but I’m sure these are transient problems that will go away once my body gets used to the diet change and pills.

Speaking of pills, I may as well give you the run-down on the prescription medications I have on top of the supplements. Bear in mind, most people with CFS / ME — or any of the other afflictions that cause muscle pain/ cramping, IBS issues, sleep issues, mood disorders etc. — are on many, many more drugs than I am. I have been told by multiple doctors to try steroids, anti-anxiety meds, anti-depressants, stronger pain killers, sleeping pills, muscle relaxers, anti-spasmodics, anti-convulsants… It goes on and on. I keep refusing. Not only do I have a sensitive system that seems to react to everything on the planet, I also have an addictive personality that cowers at the thought of any sort of withdrawal symptoms.

I take T3 and T4 for my thyroid, which doesn’t function anymore after I had radiation treatment to kill two toxic multinodular goiters a few years ago. I have an albuterol inhaler. I use prescription antihistamine eye drops and nasal spray every day because the optometrist said allergies were causing my gritty eyes and the ENT doc said allergies are causing my bothersome ears. I never had either of these symptoms before this year and I don’t really know if the Rxs are helping, but I keep using them. I have a prescription for an epipen (I’ve been in the emergency room five times for idiopathic anaphylaxis). I take a birth control pill continuously for my severe dysmenorrhea, which has landed me in the emergency room five OTHER times from vasovagal syncope. They call it fainting, I call it flatlining. Awful, terrifying experiences. I don’t need to be on the pill for birth control — it’s only so I don’t get a period and risk the collapse. I’ve had two periods in two years — when I was switching pill brands. Other than that, I take the low-dose naltrexone, of course, I use “Traumaplant” on my neck, curtesy of my Czech bff, and I always carry diphenhydramine and acetaminophen.

One of these days, I will post my back story (not a story about my back, but my history) and tell you about the doctors I’ve seen, the tests I’ve had done, and the horrors of what CFS / ME can be. But not yet… not yet.

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LDN Day 11… Thoughts on long-term illness.

Well, the Miralax didn’t work (called Movicol, I believe, in Ireland and the UK), so I took it again this morning. I’m pretty sure the constipation has nothing to do with the low-dose naltrexone. I think it’s from the radical change in my diet and all the supplement pills.

The good news is that yesterday was okay even after the activity of the day before. There were two bad spells: in the afternoon I was feeling very low, very lonely, very sorry for myself. Being home alone is very isolating when you feel like you can’t physically accomplish all the things you wished you could not work in order to do. Did that sentence make sense? I spent years wishing for an extended period of time off of work! I would do yoga and paint our rooms and read 100 books I’ve been meaning to read. I would have movie marathons all day, I would meet friends for lunch, learn to cook, learn Spanish, hike in the beautiful mountains with the dogs… I had to leave my job in May due to this evil illness and I haven’t done any of those things. I haven’t turned on the tv once during the day. I tried gentle yoga a few times before I realised the degree of my muscle atrophy and managed to injure myself repeatedly. I have met people for lunch a few times, but have always been laid up the next day, useless. I’m not sure where the days go, honestly. I used to work an average of 50 hours a week: during the slow months, 45 hours/week, during the busy months, I’ve worked 70+. Now, I am on the computer in the morning for a bit, I do laundry, I tidy up, I meditate, I try to get to the dog park and then it’s the evening. I don’t even talk to anyone on the phone because I don’t really want to talk about me and I don’t want them to ask. Yeah, yeah, same old, same old, how are YOU? The problem is, I don’t want them not to ask, either, because then I feel like I’ve been left to die. I know that’s morbid. It’s just interesting what I’m learning about myself through all of this.

The best I’ve felt in the past nine months was when my best friend came to visit from Ireland. She was a distraction and a counselor. She was full of energy and positivity. We talked about my situation, but so many other things, too. I guess I feel better when I’m not left alone with this spectre and I’m able to talk about different tactics going forward ~ in an analytical way, almost, as if it is obvious I am going to conquer this, I just have to find the right weapon. I expend a lot of energy trying not to lose hope and not be depressed and, yes, not be suicidal, so it’s nice to know that there are friends and family who understand, are sympathetic, but know that things will get better. Or pretend to. The first time I met the Good Doctor, she said, “Let me hold on to hope for you for a while. I know you will get better, so, if you lose all hope, just know that I am holding onto it for you.”

Anyway, yesterday there were two bad spells: the low, lonely moment in the afternoon and the flu in the evening. For about two hours, I was convinced once again that I was catching a cold: sore throat, headache, muscle aches, ear and nose issues. But nothing has changed this morning. I was in bed from 10pm to 10am, up repeatedly, crazy dreams, waking with my hands gripping the sheets in fists, jaw clamped down painfully… BUT, I managed to get 8 hours sleep during those 12 hours. That’s fantastic, I just have to learn to do that in less time.