Tag Archives: doctor

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LDN Day 24… 9/11

Today was a good and bad day. Bad in that I feel like I am premenstrual even though I don’t get periods. I’ve been very emotional, everything is making me cry and I want to eat nothing but sugar. On the good side, I had lunch with friends, which was sorely needed — I was starting to feel like I was useless in this world. What’s my special purpose?!

I also went for a half hour walk in the cemetery with my first-born son (dog) and it was so peaceful and also sorely needed — every time I cry, even if it’s just a sniffle, he has to wrap his 110lb body around me and nose my face to try to protect me and cheer me up. He needed some calm Momma time.

Then I did three mini-meditations: one while I was using my physical therapy neck-stretcher thing, a traditional sitting meditation, and standing breathwork with stretches. Any stretching that doesn’t pull a muscle is an accomplishment.

The best part is that, after a long talkative lunch and a walk, I feel okay. I only got 6.5 fretful hours sleep last night and I haven’t had a nap today, so I am ecstatic that I’m not completely slurry and jellied on the couch or feeling fluish in bed. Hallelujah. I did just take a tylenol, so that could be helping. Maybe my muscles won’t be diseased tomorrow… Maybe I’ll be mobile and not in too much pain… Maybe.

I am going to take a melatonin tonight (which I didn’t last night). My doctor even confirmed via email that there was no problem taking both LDN and melatonin before bed.

Finally, I’m grateful for the good healthcare workers and emergency responders. Thank you to the dedicated, caring, patient, thorough, communicative, available, informed, and informative NDs, MDs, RNs, DDSs, PAs, PTs, MTs, LMFTs, RDs, and acupuncturists (whatever letters they have after their names!). Thank you to the EMTs and firefighters that have saved my life on the multiple occasions when we have dialed 911 or 999… And those, along with the police and average citizens, that saved–or tried to save–all the injured and dying people on this day 11 years ago.

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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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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.

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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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Diet & Supplements Day 7… added info.

Ok, my grief over the loss of most of diet staples is significantly reduced now that I have allowed myself oats in the morning. It changes everything. My mood, how full I feel, my constipation… Ok, I lied, that problem still has not been solved. After days of Miralax! No change.

I finally got some more clarification from the Good Doctor about what kind of Vitamin A to buy. She had said to look for “preformed” or “mixed carotenoids”. I told her I had looked at hundreds of labels and only found “beta-carotene”, “retinyl palmitate”, “retinyl acetate”, just “palmitate”, and “fish liver oil”. She said I want most of the vitamin A in the product to be in the retinol or retinyl palmitate form ~ not beta carotene. So many Vitamin A supplements are coupled with Vitamin D, but since I already bought the latter, I’m looking for straight Vitamin A. I had blood tests done that showed I am allergic to cod, egg and tomato. I’m ignoring tomato, I’m kind of ignoring egg, but I’d like to avoid cod (the doc said not to place a lot of faith in the blood tests, but, out of all of them, he’d probably avoid cod). So, I don’t want to get Vitamin A from cod liver oil. I’m going to buy this one: Solgar Dry Vitamin A, 5,000iu. It’s also free of Gluten, Wheat, Dairy, Soy, Yeast, Sugar, Sodium, Artificial Flavor, Sweetener, Preservatives and Color. God love them.

As far as my diet goes, yesterday I had granola with almond milk and a banana for breakfast. Salmon, carrots, cauliflower, avocado and olives for lunch. Spinach, coleslaw, and pork chop with apple sauce for dinner. Snacks were mixed nuts and a Lara Bar.

I forgot to mention that the Good Doctor wants me drinking green tea and ginger tea and using olive oil and turmeric in my cooking (keep forgetting to buy turmeric!).