Tag Archives: sickness

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LDN Day 23… Do I keep going with the LDN?

Like I said, I debated for a while about whether I would be honest in this blog about just how bad it gets. I’m trying to chronicle the good times, the hopeful times, the funny times, as well as the bad times. And I’m still kind of holding back on the bad times because I’m towing the line between diary and public entertainment. I don’t want to depress or scare the readers that know me, but I also don’t want to misrepresent what this illness does to me.

Last night, I skipped all of the supplements after lunch. I skipped food, too. I just went to bed and felt crappy until about 11pm and then tried to sleep. I did take the LDN. I did some more research online and there are so many people saying, “Stick with it! The side effects go away, it gets better.”

My night was awful. I woke up with what I thought for a split second was paralysis in my left leg. Once I rolled over and the tingling started, I realised it was just total and complete bloodlessness. Then I woke up again with absolutely no blood in both my hands. It was the oddest feeling; I could not move the fingers at all. I sat up and shook them for minutes and went back to sleep. I woke up twice from the crippling headache that had struck around 6pm the previous night. I woke up at 1:30am shaking and trembling so much that I got up and checked my blood sugar (it was fine) and then decided to take 1mg of melatonin. This is a big deal for me. I have a fear of combining drugs ~ even “benign” ones like melatonin. I think I’ve only taken 1mg once in the past and it was split into two doses and I wasn’t taking LDN at the time. I like to be able to “monitor” what drugs do to me, so drugs taken at night are the worst. Well, the rest of the night was like something out of “Jacob’s Ladder”. I want to do the overnight sleep study just so someone can tell me what is going on with me in the night. Every time I woke, I was in a different place in the bed, using a different pillow, in a different position, head tweaked a different direction, jaw clamped down painfully. Every time I woke, I was either too cold or burning so hot that I would take my temperature, unable to believe I wasn’t dangerously feverish (never above 99.7 degrees). I had night sweats again. I had nightmarish, vivid dreams. In all of them I was sick and drugged. I kept going into lucid dreaming, where I consciously knew I was asleep and wanted to wake up, but couldn’t ~ I was too drugged, too sick. It doesn’t help that I’m reading those Girl With the Dragon Tattoo books, so all my dreaming imagery is pretty gruesome. I’ll probably have to put those books away for a while ~ until my subconscious isn’t such a lunatic. I have spent 4 months meditating and relaxing ~ my conscious self doesn’t feel that tortured ~ so is this the id rearing its ugly head at night? Freud, you there?

This morning, I’m okay. I feel like I’ve been put through the wars and I’m eating Tylenol for breakfast, but I’m okay. I only got about 4 or 5 hours sleep and tonight I think I might try the melatonin again. It’s either that or stop taking the low-dose naltrexone. Or start taking it during the day. I don’t really want to do the daytime LDN. I feel like, if I’m gonna do it, I should do it when I’m meant to do it for the best result. And, if I stop taking it… well, it’s like the one-armed bandits in Vegas: maybe this time will be the winner. Maybe this day will be the day the good kicks in.

I really will get to the laundry today.

Today’s Moment of Gratitude: NATURE: for the colours, smells, sizes, variations, animals, majesty, resilience, inspiration, and freedom… even gratitude for the bugs –the ones inside me. Little fuckers.

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Just when I thought I was out… it pulls me back in.

I should be used to the roller coaster by now. But somehow it feels even more cruel that I felt good yesterday and I am in bed today by 6pm, shivering, shaky, chilled, feverish, feeling scared and sick… I can’t live like this, I tell my husband.I let myself start sobbing even though I know it’ll make things worse. I don’t know how other people do it, but I can’t keep going like this. He says, You have to. We’ve had this conversation a hundred times. No, one day I won’t be able to anymore. I can’t keep getting my hopes up and then having them dashed. This isn’t worth it. Nothing is worth this, I say. One foot in front of the other. One day at a time, he says. It will be worth it. It has to be worth it.

Maybe I should scrap everything I’m doing. Start with sleeping pills, then anti-depressants, then pain killers… If this is going to be a lifetime problem, though, how do I commit to a lifetime of pharmaceutical maintenance? I can’t. But I can commit to a lifetime of good eating and relaxation practices, some exercise and laughter. Am I totally naive to think I can conquer this without heavy-duty drugs? Am I totally naive to think I can conquer this at all?

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Dark Yin

I have another good doctor. Well, not actually a doctor ~ a master. The acupuncturist has a Master’s Degree in Acupuncture and Oriental Medicine and he was wonderful. As soon as I finished recounting my story, he said, “You have a bug”… which I think I needed to hear. I know I do and, interestingly, this is precisely the first thing my wise-doctor father said when he was here: “You’ve got a bug.”

Even if there was 100% concrete lab proof that I have M.E., most cases begin with a sickness, so must patients probably are infected with a bug. The Good Master acupuncturist said, “I have absolutely no doubt that something has taken up residence in you, but we don’t know if it’s bacterial, viral or parasitic. There are bugs we can find and treat, there are bugs we can find but usually wouldn’t test for, and there are bugs that we don’t have the ability to test for, so we’d never find them. In Chinese medicine, we treat for all bugs rather than looking for the particular culprit which could be hidden deep in the body.” They call the bad stuff that you can’t see or find “Dark Yin” and the problem it has caused with me is called “Gu Syndrome”.

Now, normally my ears slam shut when people talk about Chinese herbs or Oriental medicine. Like I said, I have always been a traditional Western medicine type of lady, but, if I’ve learned nothing else this year, I’ve learned that I don’t know shit. Who am I to say that this or that is dangerous? Who am I to say that this or that will work or not work? None of the doctors I have seen has found anything wrong with me yet and none of them has any advice except sleeping pills and anti-anxiety meds. Who am I to take their tests, opinions and traditions as the only options?

I did tell him No. Way. when it came to taking the Chinese herbs. He asked me to research it and think about it. My husband says, “Of course you should try it!” Those of you dealing with this disease know that doctors give you no answers and you would do anything to get better, so I want to put this information out there for you to consider. I am going to upload a photo of the herbal remedy info sheet the Good Master gave me. Here’s the first line:

“A unique remedy for the important clinical phenomenon of Abdominal Gu Syndrome: difficult and treatment-resistant diseases (such as IBS, chronic fatigue, fibromyalgia) caused by chronic, often undiagnosable parasitic infections…”

Although I’ve gone over the genesis of my illness in my head a million times, our conversation today helped me see it more clearly and feel more hopeful. He said, “Can you pin-point the day you got sick?” And I CAN. That’s why I think the Bad Bug scenario rings true. I was on vacation in Virginia, when, very suddenly, a got diarrhea. Believe it or not, I’d never in 38 years had the traveler’s diarrhea that people talk about. I was not nauseous, I did not vomit, just diarrhea that started suddenly and did not stop for a few days. I couldn’t eat ~ not really because of nausea, I just could not eat. I stared at an egg, willing myself to take a bite and I couldn’t. It scared me, brought me to tears ~ that had never happened, either. I thought everything resolved and then, three months later, I was writing Christmas cards and something started to happen to my body. I thought, Uhoh, I’m getting really sick. I moved to the couch and fell asleep for an hour, then, I woke up and told my husband that something was very wrong and I was worried that I might have to go to the hospital. It was the first cycle of chills and sweats that would continue for 9 months. “Chills and sweats”, of course, is a description that does not do it justice. For a better picture, read my diary excerpt:

https://ldndiary.wordpress.com/2012/08/31/how-my-cfs-me-began-an-excerpt-from-my-diary/

Now I wonder, did the Dark Yin take hold of me in Virginia, make me sick for 3 or 4 days, burrow deep and incubate for another 2.5 months and then start making me very sick? It was cyclical; it seemed like a parasitic life cycle, that’s why malaria fit so well. But my body couldn’t fend it off for whatever reason.

Feel free to not read past here. Below is my own investigative work for my own records. Believe it or not, I have never looked at the timeline.

During this whole time between June and December of last year, I was seeing a sports medicine doctor, a physical therapist and a massage therapist for my recurring, crippling neck injury. I also had to get two crowns over the course of these months, requiring multiple visits to the dentist. Also, when I look at my diary, I worked SO much. Every day was so busy and stressful and hectic. I didn’t take any time off whatsoever when I was sick ~ only for my trips to Ireland and Virginia.

June 17th-27th: In Dublin. I had a swollen tongue on 24th and 25th, took benadryls. I had a chilled/syncope/collapsy/low BP episode on the 26th, but didn’t go to the hospital.

Last week in June: continued to have swollen tongue.

July 11th: Saw Allergist who diagnosed me with autoimmune urticaria and angioedema and told me to take Zyrtec.

July 15th-26th: Acute bronchitis: short of breath, congestion, body aches, cough, mucous, sinus pressure.

July 22nd-24th: My Father’s visit.

August 6th: To Virgina.

August 9th-10th: Sick with diarrhea.

August 11th: Flew home early.

August 17th-21st: Drove to Boise, ID (with husband and dogs) for work.

October 9th-10th: Work retreat.

October 19th: Flu shot.

November 3rd/4th: Pretty sure I was sick with chills and sweats during this time.

November 17th-20th: Pretty sure I was sick with chills and sweats during this time.

November 22nd: Saw endocrinologist to talk about symptoms.

December 15th: Saw PCP to talk about symptoms and get malaria test.

December 20th-22nd: VERY sick.

December 27th: Was told malaria test was positive, but had two subsequent tests that were negative.

December 30th-January 1st, 2012: VERY sick. My mother’s visit.

January 3rd-10th: No appetite, severe chills, heart races, breathless just from standing up. Sweats every night, can’t eat, weak, lost 5 lbs, feel like I’m going to die.

I stuck out work for four more months before I had to leave my job to try to get better. The rest is history. The Dark Yin is still my dark passenger.

 

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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).