Poisoning Myself.

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Three days ago, after having Cromolyn Sodium in my cupboard for 19 weeks, I finally decided I was stable enough to add a new drug. Cromolyn was originally used as an inhaled anti-iflammatory to treat allergic- and exercise-induced asthma. The oral version of Cromolyn has been used more recently to treat mastocytosis and mast cell disorders. It is a liquid that comes in ampules and is mixed into water. The doctor who prescribed it for me is the same one that diagnosed me with MCAS, but he didn’t seem to know much about Cromolyn. The pharmacy knew nothing. I had to go online and ask the people in my mast cell Facebook group for details and then call the pharmacist and explain exactly what the drug was. I am so thankful for the knowledge of these groups and Cromolyn seemed to help far more people than it harmed. It also seemed pretty innocuous — I only talked to a few people who had major side effects and they were things I don’t typically experience, like itching and nausea.

Of course, there’s always a part of me that is looking for the magic pill. Imagine I started this drug and my mast cells calmed down and symptoms I didn’t even realise were caused by them disappeared! … But, it still took me almost 5 months to convince myself to take it. It wasn’t until my bowels went into hibernation that I decided to take the plunge. A few weeks ago, motility stopped, gastroparesis reared its ugly, bloated head and everything ceased functioning in my intestines. No movement, not even a fart, and mega doses of magnesium and vitamin C weren’t doing anything. Cromolyn can help these internal inflammation symptoms and I had high hopes.

The dose I was meant to take was eight ampules in a day — two 4 times a day. The doctor never mentioned to work up slowly and some people in my online group were able to start at full dose. I wanted to be careful because we’re talking about my ridiculously hyper-sensitive body, after all, but I was pretty confident that I’d be fine. So, the first day, I took 1/3 of an ampule in the morning. The next day, I took 2/3 of an ampule in the morning. All seemed fine, so, that night before bed, I took 3/4 of an ampule. At 5 in the morning, I woke up sick sick sick. So sick. Sicker than I’ve been in years, maybe. Sick like my original sickness. Malarial. Encephalo-. Shaking all over, chilled, sweating feverishly, head pounding, stiff neck, muscles cramping, throat constricted, barely able to lift my arm or walk to the bathroom. Oh god, the FEAR. I’d rather die than go back to this. I felt like an ex-con in a movie choosing death-by-cop rather than go back to jail. My mind was like a panicked, caged animal, looking for a way out, falling in and out of fever dreams where I was screaming for my mother over and over again. I’d rather the “nightly flu” that I used to get. I’d rather the ME monster that slams me down with massive, pummeling hands, but I now know will release me eventually if I hold very still for a while. I think I’d even rather be back in December, 2013, when I called on all of you angels to get me through what I thought might be permanent bedboundness.

I felt poisoned. There’s no other way to describe it. I took my temperature: 98.4 degrees. My blood pressure was 80/55 (normal for me). My blood sugar was 80. Not much I could do but wait it out. I lay in bed the whole day yesterday, meditating, deep breathing away the fear of permanent relapse to an acceptable distance. I have a painful burn on my hand that is taking a while to heal and I kept falling into dreams where the burn was causing sepsis. That’s what it felt like — a systemic infection — I’d wake up panting and quiet my mind. I’m good at doing that during waking hours, but, in my dreams… I’m always silently screaming.

I feel a bit better today, but still didn’t sleep. I haven’t had a headache in a long time, believe it or not, and the pain is brutal. My muscles are aching and I feel swollen. The fear has dissipated to frustration. I’m frustrated with myself for trying another drug. I was doing so well. I had a lot of firsts the last few weeks (I’ll post about that later, but here’s a teaser: first time in a store, first road trip, first time on a beach in two years!) and then I couldn’t leave well enough alone and trust that my body was slowly, but surely, helping itself. I’m frustrated with myself for not going slower. I could have ramped up the dose over a full month, but I’m always so impatient. I’m frustrated that I’ve lost the potential help of Cromolyn. That was probably the worst reaction I’ve ever had apart from anaphylaxis, so I’ll never touch it again. I’m not even willing to try again going much slower, so I’ll never know if it could have helped. And that makes me frustrated because it was so hard to get it and it’s incredibly expensive and it’s such a waste. I have a friend who can take it off my hands, but, if I ever wanted to try it again, I’m out of luck because I don’t have insurance to cover it anymore.

And, in contrast to how I feel now, I realise how well I was doing. I was managing to do things every day — stand in the kitchen and cook for an hour, have conversations easier, wash and dry my hair without a thought. This weekend we have one last stab at summer — two days of high 70s and low 80s — and I was going to surprise our friends Z and J by going to their house on Vashon Island for the first time in years. I felt strong enough to do it and that was not even an option 6 months ago. Instead, I’ll barely be moving this weekend. But at least I’ll barely be moving in the garden, in the sun.

What I’m doing now that may or may not be making a difference.

This morning, I had a high resting heart rate of 67 bpm. Yesterday, by comparison, it was 56. Since I’ve been tracking my morning HR, it has been a fairly good predictor of how stable my body will remain throughout the day. I anticipate that today it will be a little more difficult to go up and down stairs, I’ll have to rest a bit more, my blood pressure might be lower and I’ll undoubtedly take fewer steps than my current norm. I can tell by how achy I was this morning. But, last night, while getting ready for bed, I was happy and hopeful. I was feeling like I could really get better enough to live again and I vowed to write a post today about all the things I do that may or may not be helping.

I’m a completely different person than I was over Christmas. I thought I might never talk properly again, walk more than a few shuffling steps again, that I might just die in my room. I’m so happy now, my skin looks good (the dermatologist’s protocol worked!), I haven’t had to check my blood pressure or blood sugar in months because I feel stable. I don’t know what has brought about the difference, but I’ll list everything I do here so that I can reference it in the future and maybe it’ll help someone.

  • I stopped panicking about my sleep. Of course, if I get fewer than 4 hours, I’m upset and worried, but I seem to be able to sleep pretty well from 12am to 5 or 6am, so, I’m going to trust my body and be okay with that. When I’m crippled and hazy from lack of sleep, I remember the eternity I spent in viral, malarial night sweat hell. There is not much these days that is as bad as my nights were from November 2011 to early 2013. I will never be able to adequately describe how sick I was as my body tried to rid itself of whatever evil has invaded. So, I will take constant awakenings and nightmares in a DRY bed any day.
  • I track my resting HR every morning before getting up and before taking my thyroid hormones.
  • I lie in bed for a few hours in the morning, cuddling with my dogs and reading, with the shades open to let light in and set my body clock.
  • I wear my pedometer every day and have been taking 1300-1500 steps a day for the last two months versus 300-600 in December.
  • I usually have my light box on for about 45 minutes while I’m on the computer with my morning tea.
  • I only drink teas that I have researched and I trust the companies (their growing procedures, their tea bag materials– here’s some good help) and, besides my morning decaf black tea, I only drink teas that can supposedly help with one of my symptoms (tulsi, roasted dandelion root, ginger, chamomile, peppermint, licorice, fennel).
  • I drink a vegetable juice every few days in the morning, on an empty stomach (following these tips).
  • I do preemptive rests, as well as recovery rests. I lie down a minimum of 3 hours a day (on top of the 12+ hours I’m in bed at night). Ideally, this would be in 3 separate hour-long meditations, but it often winds up being 2 sessions. When I’m not doing very well, I can usually get out of bed for a few hours in the morning and the evening, but I might spend from 12pm to 7pm in bed, on top of 10pm to 10am. My preemptive rests consist of relaxation and meditation. They work by recharging my body and brain in what feels remarkably like what I imagine an old crappy phone gets when plugged in for an hour (my best friend described my body this way when I was still functioning and not housebound and I didn’t quite get how accurate it was until I spent a year “plugging in” to bed throughout the day). Recovery rests are different. My initial warning signs these days are neurological: my voice gets very weak and I slur badly and can’t find words. My head hurts, vision gets blurry, tinnitus cranks up, coordination is off and I get internal tremors. Everything takes immense concentration. The worst symptom, though, is what I call my “buzzy head.” It’s like internal tremors in my brain. My forehead feels numb and my brain physically feels like it is buzzing and vibrating… like every mitochondrion is rocking back and forth, sputtering and smoking, trying its best to spit out a little more energy– billions of microscopic engines, overheating, gauges in the red, pushed to the max. When this hits, it’s a really bad idea to push through and I go straight to bed and usually fall into a brief in-and-out, trance-like sleep as my brain recharges.
  • I do breathing exercises every day. While resting and during meditation, I do deep breathing techniques that I learned from a video to help with MS pain. They help strengthen my diaphragm and increase oxygen and carbon dioxide. Then, throughout my rests (and any time I think about it throughout the day), I practice abdominal breathing to help settle my nervous system and calm the fight or flight response, which we live with permanently when we have central sensitization issues. Jackie over at lethargicsmiles has a great description of this type of breathing here. I’ve also read that some people benefit from purposely slowing down their breathing to help blood gas absorption.
  • I change up my meditations depending on how bad my symptoms are. Sometimes I need complete silence and I lie very still with ear plugs in. Sometimes I just need white noise and I listen to Kelly Howell’s CDs that use binaural beats to stimulate alpha, delta and theta brain waves. All other times, I alternate through yoga nidra, Buddhist meditations, guided imagery, affirmations, body scans and simple breath meditations. Find some more links at the bottom of this post.
  • I loosened my routine and relaxed my demanding brain: if I need to spend all day in bed, that’s okay. I go outside when I can, I eat junk food when I want, I don’t beat myself up if I can’t bathe for a week or don’t go to bed until midnight.
  • I made peace with my cpap. I try to wear it every night, but, if I take it off after a few hours, it’s okay. And, if I don’t wear it at all, it’s okay. I know I feel worse when I don’t wear it — I keep that in mind and try to be organised about washing it early in the day because, before bed, I often don’t have the energy — but, when I don’t wear it, I don’t panic about the hundred million apnea events that woke up my brain while I “slept”. It’s okay. I’ll be okay.
  • I try to get to physical therapy every month or so, massage every two months (I would like these to be much more often, but can’t justify the money) and I was going to start regular hydrotherapy, but, unfortunately, after the first session, I realised it’s not worth the expense ($83), so I will try to mimic it at home (basically, hot and cold towels and electrostimulation).
  • Food: I’m sticking to my low-histamine + autoimmune protocol diet for the most part (that is: NO gluten, grains except rice, dairy except butter, legumes, nightshades, nuts, seeds, eggs, and no high-histamine foods, such as pork, tomatoes, eggplants, spinach, bananas, vinegar, fermented foods, processed meats, tinned fish/meat etc.). I was strictly low-sulfur for a month and that might have contributed to my feeling better, but I have since stopped that. I don’t beat myself up for my Kerrygold addiction and I don’t worry about my constant snacking and the fact that I go through sweet potato chips and plantain crackers by the bag-load and can’t seem to quit Salted Caramel Chocolate coconut ice cream. Life is too short. We buy organic and I eat a huge variety of veg and herbs. We always have fresh parsley, basil, rosemary, thyme, cilantro, ginger… We buy meat from farms we’ve researched and distributors we trust and make a lot of bone broth, which I drink everyday with a gram of salt in each mug. I recently switched from non-stick pans to stainless steel and cast iron. I drink filtered water. And I keep a detailed food and symptom journal (which, really, has told me nothing). That’s more than I ever did in the first 39 years of my life, so I’ve come a long way.
  • I’ve switched some products: I use Tom’s deodorant and toothpaste. I use supposedly less toxic shampoos, soaps and sunscreens. I use a face wash, moituriser, dish and clothes detergent that don’t make me gag with perfume and are kind to sensitive skin.
  • I use dry eye drops throughout the day and the Rxs from my dermatologist on my face. At night, I put castor oil over my liver and Badger sleep balm on my throat. When my neck is acting up, I use my TENS unit, cervical traction and Tiger Balm neck and shoulder rub. And then there’s vitamins and supplements…
  • Here’s what I take currently:
    • Morning:
      • thyroid hormones (T3 and T4)
      • Probiotic
      • 2.5mg Prednisone
    • Before meals:
      • Thorne Bio-Gest (for gastroparesis)
      • Digestive Enzymes (for gastroparesis)
      • 250mg yucca (for high ammonia/CBS mutation)
    • After breakfast/mid-day meal:
      • 500mg Acetyl L carnitine
      • 100mg CoQ10
      • 36.5mg riboflavin 5’ phosphate
      • 15mg zinc + B6
      • 500-1,000mg vitamin C
      • 100mcg molybdenum (for high ammonia/CBS mutation)
      • Thorne trace Minerals
    • Sporadically:
      • 1 tsp Calm magnesium + calcium
    • After dinner:
      • 2,000mg fish oil (1,000mg EPA, 50mg DHA)
      • 4,000iu Vitamin D3
    • Before bed:
      • 400-600mg magnesium glycinate chelate
      • GABA+theonine
      • 1mg Melatonin
  • I am soon going to add charcoal, Thorne Medibulk, biotin, and a second probiotic with histamine-lowering strains of bacteria.

Something is making a difference. Or maybe it’s just time. Who knows? But I will continue to persevere.

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.