LDN Day 19… My visit to the sleep specialists.

Today I had the 4th (allopathic) doctor in a month bemusedly tell me there is no point in taking naltrexone. She shook her head and, with a quizzical look, said, “We don’t prescribe it – no doctor I know prescribes it. It was used in the past to help drug attacks, but I don’t understand what naturopaths are doing with it now. If you’re worried about taking drugs, melatonin is far, far safer than naltrexone.” Of course I know this. I know it’s not FDA approved, I know most doctors don’t prescribe it, I know it is a long- shot, but there are so many amazing stories out there, I felt like I had nothing to lose. Although, it’s true that I really have nothing to report except losing sleep, gaining weight and being constipated. The dizziness, sadness, fatigue, muscle pain, and all the rest of it seems to be the same.

Today was my sleep study consultation at the medical center. Luckily, these people actually seemed to be experts — it was a much better experience than the chronic fatigue circus. Although, it was still like pulling teeth to get information. The woman in the front office made a good point when I bitched to her about how doctors treat patients like they have an IQ of 50. She said that they have so many patients from different cultural backgrounds or with limited English or with limited education that doctors usually do dumb everything down. It was a good point. It’d be nice if they could really quickly read their client and adapt their communication and level of engagement, but I guess they leave that to the savvy bartenders and servers out there (do NOT underestimate what sort of skill is needed to be in the service industry — not only because of the patience, stamina, intelligence, and highly sophisticated organisational skills needed, but mostly because of the fine-tuned social tact and interpersonal communication skills that are necessary. In short, you have to be charming, perceptive, intuitive, smooth, have street smarts and be able to adapt to any situation, as well as all the physical and mathematical stuff. When a nuclear bomb decimates humanity, it’ll be the intelligent restaurant workers that are walking down The Road).

Anyway, today I had my sleep study consultation (by the way, it took me two full hours to fill out the paperwork for the appointment. Managing a health problem is a full-time job. Maybe I should make that my next career: managing the appointments, pills, paperwork, test results, Rx refills etc. for people. Problem is, no one with medical problems and medical bills can afford help…). They want me to definitely do the overnight sleep study because my insomnia is “quite complicated”. I don’t fit into the typical profile for someone that has sleep problems (don’t drink, smoke or do drugs, not overweight, not very old, don’t have any of the typical health problems, don’t have kids, don’t watch tv in the bedroom, don’t even have a job anymore). They gave me advice on how to change my lifestyle:

Don’t exercise or eat within three hours of sleep.
No tv or computer in the bedroom.
If you can’t sleep, get up — whether that’s at night or in the morning.
Don’t nap during the day.
No caffeine or alcohol in the evening.
Don’t read your book in bed.

Most of this is obvious and I already know. But, my problem is, if I go to bed only when I am so exhausted I feel like I must sleep, then I will either be in bed all day/night or I’ll never be in bed. I always feel like I could fall asleep and I always do, but then wake up half an hour later… I can do this cycle for 12 hours. They said the sleep study would measure how often I am in deep sleep, REM etc. and I said, wait, I have a Zeo that tells me that info. Is this as sophisticated as it gets? Thankfully, they said the sleep study would also measure my heart, oxygen levels, whether I have sleep apnea, whether I snore, how much I thrash about and the brain monitoring shows much more than the Zeo. They said, even though it may feel like I wake up 16 times a night, my brain might actually be so active that it is more like hundreds of times a night in terms of sleep quality. Also, if I happen to sleep like a baby when I am in the hospital, it might just be a vicious cycle of my worry about not being able to sleep causing me to not sleep. In which case, they recommend drugs. They couldn’t believe I hadn’t caved and tried sleeping pills during the last 30 years of bad sleep and, especially, the last year of nonexistent sleep.

For the last 6 nights, I have only had 6 hours sleep each night, but it honestly feels like 2. I am so tired! But I am still taking the LDN and sticking with the diet and the supplements. Tonight, I might start taking melatonin again and up the dose to 1mg. The doctor today laughed at me when I said I had been taking 0.5mg. She said, “Do you mean 5mg?” They never start anyone lower than 3mg.

The pulled muscle in my back feels better, so, my goal today is get to the dog park and finish the laundry. And meditate without falling asleep per the doc’s instructions.

Finally, I am grateful for my husband. It’s almost futile to write about it because there are no words to express the depth of my gratitude. I found the kindest, most generous, most patient, most selfless man in the world (or, at least, in MY world ;)). He has literally saved my life more times than I can count and he takes care of me in sickness and in health.

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!

LDN Day 17… CFS / ME is still in charge.

Ugh. I have zero energy. Every night these last few days with my Dad visiting, I have turned into a brain-dead, drooling zombie around 8 or 9pm… To the point that I can’t carry on a conversation, I can’t focus. Brain fog is a perfect description. I take so much longer to form my thoughts that people try to finish my sentences for me. And I am too tired to try… My sister asks, “what’s the plan for tomorrow?” and I literally have difficulty understanding her question, let alone coming up with a plan. I hit a wall of fog.

My sleep streak ended. Either 6 or 7 hours the last four nights, which isn’t necessarily that bad except the nights are so difficult with pain, sweats, chills, cramps — and I WILL NOT GET BETTER without 8+ hours/ night. See the Zeo graph below — constantly awake. Between 10pm and 2am, I dipped into sleep six times for no longer than ten minutes each time.

20120904-175354.jpg
Yesterday, I was very dizzy in the morning. The night before, I had been a bit scared, thinking I really overdid it, regardless of my careful intentions. I was in bed, chilled to the bone, so so so cold. And felt like I had the flu, of course. The next morning, like I said, I was dizzy for hours, but felt better after a walk with my Dad.

Today, I am immobile. I pulled a muscle in my back yesterday picking up a pot of water (god forbid I try to clean the kitchen!) and that, coupled with the hangover from socialising, has left me practically bed-bound. I woke up with a wicked headache, extreme pain from the top of my left skull, down the left side of my neck, down the pulled muscle on the left side of my back and into my hip. My throat has been sore all day, eyes puffy, runny nose. Ugh. I feel awful. I visited calmly with my family for two days and I’m paying for it. Barely have the energy to type. Definitely don’t want to call anyone. It probably won’t be much better tomorrow. I need unlimited massages for free… I need unlimited funds for weekly massages. For all of you out there dealing with muscle hell, massage therapy is a godsend. It doesn’t make it worse — I know it feels like someone pressing on your back would make you shriek, but, the next day, things are so much better.

This is an evil disease with no answers, no experts, constant pain, limited mobility, constant searching, limited hope.

Almost forgot again: I am grateful for my dogs that always get a smile out of me and, no matter how bad my day is, they make it better.

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).

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.