Dr. Chia appointment preamble.

7/14/14

Dear Dr. Chia,

I am flying from Seattle for my initial appointment with you. I have been housebound for almost two years and this will be my first time traveling more than 45 minutes away from my home (which was to see a doctor).

I want to make sure the trip is advantageous and takes as little toll as possible on my body. I thought I would send you a synopsis of my health history in the hopes that you will be able to read it in advance.

I became ill with what was eventually diagnosed as ME on November 1st, 2011. It started as severe recurrent chills, shakes and drenching night sweats. They would last many hours throughout the night and then resolve for a week or two. I was originally diagnosed with malaria via a positive blood test, but two subsequent blood tests were negative, so we did not pursue treatment with anti-malarials.

Eventually, the drenching sweats were nightly and there were a host of other symptoms. Six months later, I had to leave my job and, three months after that, I became housebound. Symptoms have shifted and changed: Pain and sleep dysfunction became my biggest concern, the sweats eventually stopped and the pain abated, but flu-like symptoms remained. Chronic headaches, “post-exertional malaise”, incapacitating brain fog, slurring, low blood pressure, vision issues and what feels like a cellular energy deficit (fatigue, exhaustion don’t describe it) still remain my most constant symptoms.

When this all started, I was a workaholic, chronically stressed, had recently suffered a diarrheal illness and gotten a flu vaccination. Although I had a long history of idiopathic anaphylaxis, autoimmune angioedema and thyroid disease, I felt and looked healthy and had a full life. ME has stolen everything.

I was recently diagnosed with mast cell activation syndrome and I am also looking into high mycotoxin urine tests and deficiencies in my methylation panel.

Below is a timeline of my health history.

Thank you very much for taking the time to read this and I look forward to meeting you.

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  • 1973: Born, heart murmur, lots of inoculations.
  • 1973-80: Lots of international travel.
  • 1974-78: Chronic cough, asthma, pneumonia twice, two ear infections. Antibiotics. Positive skin prick tests to many things.
  • 1980: Moved into basement of damp home, probable mold.
  • Teenage years: chronic headaches, constipation, sore throats. Eye swelling. Severe dysmenorrhea with periods. Dxed with Raynaud’s syndrome.
  • 1987: Tonsillectomy
  • 1988: BCG vaccination for TB and rubella.
  • 1989: Very sick with high fever. Suspected meningitis.
  • 1989 or 1990: Bad food poisoning.
  • 1995: Bad food poisoning.
  • 1996: Tetanus, polio, Hep A, Oral Typhoid for international travel. Got sick in Honduras after eating conch soup.
  • 1997: Terrible angioedema episodes.
  • 1999: Ice-pick headaches. Hep B vaccination series.
  • 2001-02: Full-blown anaphylaxis (idiopathic), ER visits.
  • 2003: CAT scan and lumbar puncture for chronic headaches. Idiopathic neutropenia, low TSH. Chickenpox exposure (husband) and vaccination.
  • 2004: Started having problems with hypoglycemia, which continue to this day.
  • 2005: Acute cervical spine sprain that has caused me problems ever since. The first episodes of vasovagal syncope and collapse with ER visits and very low pulse and BP. These have continued intermittently every year since. Suspected lower-degree anaphylaxis.
  • 2009: Toxic multi-nodular goiters on my thyroid. Radioiodine ablation and started daily T3 and T4.
  • 2010: Found osteopenia.
  • June 2011: Traveled to Ireland. Angioedema: Eye and tongue swelling. Syncope/anaphylaxis episode.
  • July 2011: Acute bronchitis. Dxed with autoimmune urticaria and angioedema and many allergies via skin prick testing.
  • August 2011: Traveled to Virginia. Bad GI illness (diarrhea, probably viral, in ER getting fluids. No vomiting) 3 days after plane ride, day or two after swimming in lake.
  • September 2011: Lots of dental work, getting veneers without epi (many, many injections).
  • October 19th 2011: Flu vaccination.
  • November 1st 2011: Beginning of M.E.

I also included a list of my symptoms, which can be found here.

Chronic Fatigue & M.E.

Elizabeth Milo:

On ME and chronic fatigue, from my friend, Jak, over at Mast Cells and Collagen Behaving Badly.

Originally posted on Mast Cells & Collagen Behaving Badly:

M.E. is one of the most abused diagnoses of the last Century and the disease is definitely the most misunderstood, neglected and fought-over of our time.  For many years I’ve avoided the politics of M.E. because of any topic it’s the one that can make my blood boil in a nano-second and the stress isn’t good for my health.  Having said all that, it’s still worthy of a post (but I’m not going to make a habit of it).

The reason it’s worth a post is that many of the people I’ve come across over the years with a variety of other diseases, eg. Ehlers-Danlos, Lyme, Lupus, Sjogrens, Coeliac and many others, were initially diagnosed with Chronic Fatigue Syndrome before the real cause for their fatigue was found and their diagnosis was changed.  Over recent years M.E. has been reclassified as CFS and the diagnostic criteria watered down to such…

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Missing friends.

It’s of those days when I’m consumed with longing for the good old times. I feel the summer slipping through my fingers and I’m panicked at the thought of another long winter in my bedroom. I want to be able to casually leave my house and go for a walk with someone and talk and laugh. I want to be able to go on a road trip, wind up floating down a river, wake up to coffee and good food, feeling relaxed and energised.

I want to reach back in time to that 25 year old and warn her of what is to come… tell her to treasure every animated conversation, every effortless moment and carefree movement. Tell her to neglect nothing: friends, sleep, openly giving love. I want to tell her that she has no idea just how short our time is and she can’t waste one more second being an over-analytical perfectionist or self-conscious and guarded or a workaholic.

To all of my dear friends: thank you so much for the good times. Each one is a beautiful, glimmering little gemstone that I take out of my bag of memories and hold lovingly, careful not to wear it down and dull its brilliance.

Late to the Black Dress party.

I am always late to the party, but this time it was not because I spent too long on my hair or make-up. Nope, in fact, my hair has been in this bun for coming up on two years and I don’t own any make-up that is less than three years old. I have literally just rolled out of bed and this is the first and only shot I took (thank god, because I wasn’t up for multiple trips back and forth to the camera). This is where I sit for a few minutes every day to let my blood pressure and heart rate stabilise before getting up and getting dressed (or not). The only difference is I’m usually not wearing black. In fact, I’m usually not wearing anything, my neighbours love me.

Friday was Severe ME Awareness Day and Jocelyn over at No Poster Girl drew my attention to the Black Dress Selfie Campaign thought up by Janet Smart. I’m all for any excuse to take fun photos, so I decided this morning to don this lovely number (it’s a top, not a dress, though: remember, not all men (or women) with ME like to wear dresses, so Black Shirt Selfie day might have been better).

Sally Burch has some great posts about this, with links to information about severe ME and galleries of images here and here. There is also a slideshow of images on the Dozy Dayz blog.

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The Other Shoe.

Whereas my preparation for this trip was incredibly thorough (I will write a post on that later) and the journey down to California went off without a hitch, once we got there, things went a little sideways.

I’d never been to LA and it was a learning curve. I’m very grateful that my therapist warned me about the vastness of the area and I had a few friends on which to rely for info (Patrick and SGV, I’m looking at you). For example, I was told to look at Palos Verdes, which is a bluff above the city, overlooking the ocean. I thought it must kind of be like a bigger Queen Anne in Seattle, a neighbourhood on a hill. However, Palos Verdes has 4 towns on this hill. There are multiple airports in LA and they are all legitimate, proper airports. I know that sounds silly, but, in Dublin, there’s Dublin airport, in Seattle there’s SeaTac and some landing strips. I like to say, in Seattle it takes about half an hour to get anywhere — give or take 10 minutes. A childhood friend of mine lives in LA, but she lives hours away from where I was staying, to see her would practically be a planned road-trip. They are obvious differences — it’s a huge city, after all — but I needed to make a mental shift that I never did in London or New York, for example.

Anyway, I was told that the heat and air quality in LA were awful — refineries sit very close to Dr. Chia’s office and stagnant air plagues the whole inland city. I was also warned of mold issues in beach areas. I was treating this as an 8-day retreat with my mother, whom I see rarely, a week to let my husband have some alone time and a test away from my home and dogs for the first time since I got sick. I was concerned about picking a rental in an area that made it difficult to sit outside. I imagined languishing in an air-conditioned house the entire time, with the garden being too hot and acrid and my being too sick to venture out to a different area.

(Aside: I had a few people suggest things I should do in LA ~ go to the beach, see the glass chapel ~ and it baffled me that they thought I’d be able to manage things after a grueling journey that I can’t manage when I’m at home resting. People can never fully grasp how limited we are, even people that see us, know us, live with us. They can never know the constant tally of energy expenditure versus energy conservation that goes on in our brains. The almost-subconscious weighing of necessity, desire and payback. The ever-present knowledge of what we’ve done that day and what we still need to do before bed that dictates our every word and movement.)

So, I found an AirBnB rental that was in Rancho Palos Verdes. The host was extremely nice, said it was quiet, there was no mold and they rarely had to turn on their A/C. It was about half an hour from the airport and 25 minutes to Dr. Chia. As we drove up the hill, the temperature dropped from the high 80s to the high 70s; it was perfect. The house was beautiful, with an expansive view of the ocean and it was sunny, but not too hot. I rested in the garden and watched the sunset, drinking up the view, so deeply submerged in gratitude, I thought it might overwhelm me. I never thought I’d be anywhere but Seattle again. Honestly, I thought I might not be anywhere but my house again. It was at once completely foreign and very familiar. I was taking in every scent and colour like an alien in our world, but it also felt completely normal, like the past two years were only two weeks and I was navigating just another part of the earth, like I have so many times before.

Then the other shoe dropped. Huge, billowing rolls of fog came in off the ocean and the humidity shot up and the temperature dropped. The damp soaked into my bones and gave me a chill that never really went away.

The fog rolling in. In person, this was huge ~ the photo can't do it justice.

The fog rolling in.
In person, this was huge ~ the photo can’t do it justice.

I went back into the bedroom to rest and it reeked. It was like walking into a wall of mildew. The en suite bathroom had no fan and the shower head couldn’t be turned to stop the water from spurting all over the floor. The closet was moldy, the duvet was musty and the blanket was crusty with something spilled on it. There was more, like stained pillows, toilets backing up, dirty dishes in the cupboard, moldy food in the fridge, a filthy oven, loud construction in the lot next door, but none of that bothered me like the smell of the back rooms and bathrooms. Even my husband, whose nose doesn’t work as far as I can tell, commented on how bad the bathroom was. The whole house felt damp and heavy. Between 7pm and 11am, the humidity never dropped below 78% and the temperature was in the low 60s. I didn’t have very many warm clothes with me, but I put them all on. Every day, I would sit on the couch, wearing three layers of clothes, and wait for the first beam of sunlight to break through the clouds and then go out to that spot and bake myself, like trying to dry out a water-logged book. The day we left, the humidity was 96% and it was completely overcast. That’s, like, raining indoors.

RPV bedroom on the left, my room at home on the right (humidity on the top, temperature in Fahrenheit on the bottom). I've never been so happy to be back in Seattle dryness in my life.

RPV bedroom on the left, my room at home on the right (humidity on the top, temperature in Fahrenheit on the bottom). I’ve never been so happy to be back in Seattle dryness in my life.

After much deliberation, we decided to leave early. I was fine for those few hours that the sun was up and I could be in the garden, but with the forecast calling for a chance of rain and even more clouds, I had to get out. My breathing felt heavy and I didn’t know what I was inhaling while sleeping in that room, so I didn’t have a “safe” place to lie and rest. So we changed our tickets for the evening flight the day after my Dr. Chia appointment. There were only two flights a day out of Long Beach Airport and the morning would be too difficult on my system. If I don’t rest in the mornings, eat properly, poop properly, hydrate and salt properly, I tend to have crashes of one sort or another: blood pressure, blood sugar, weakness etc.

Note to self: don’t choose the last flight of the night when you are sick, in a wheelchair and on a special diet.

Our flight was scheduled to depart at 7:25pm, which was already pushing it because I wouldn’t get home until around 11pm, well past my bedtime. We were told the flight was delayed at around 7:15pm — there was engine trouble and a mechanic was coming to take a look at it. Of course, I knew immediately it would be canceled and it was the last flight to Seattle that night. They could have moved quickly and gotten us to LAX for one of a number of nonstop flights to Seattle, but, instead, we waited over two hours to be told at 9:30pm that the mechanic had finally arrived. My husband actually had us transferred to a flight leaving out of LAX at 8:55pm, but we wouldn’t have been able to make it there in time. Actually, we probably wouldn’t even have been able to get my suitcase in time. We asked about getting a hotel and were told there were no open rooms in the city. No hotel rooms in the whole of LA. Hhmm. By then, I had finished all the food I had brought for the flight (not much: carrots, cucumbers and a bunch of Terra vegetable chips) and was curled up with my feet on a chair and my head on the wheelchair, feeling woozy and slurry. Through all of this, my heroic mother stood in line to talk to a gate agent with the throngs of other people and did everything she could to fix the situation.

I had already spent a lot of time on my phone looking for a hotel to no avail, but I didn’t trust my efforts, so I asked my husband to help from Seattle (he had only come to L.A. for two days to drive and help get us settled). He texted me three motels that he found through Expedia, but we didn’t know if they were places that Alaska Airlines would refund, plus my mother still was holding out hope that the engine would be fixed, so we held tight.

The little engine that couldn't.

The little engine that couldn’t.

When we finally got word that the flight was canceled, I wasn’t in the best shape. Two of the places my husband had found were now full and the last one was a $60 motel in Anaheim, charging $657 through Expedia. In desperation and delirium, thinking the airline would reimburse us, I booked it. And, when I called to tell them we were on our way, got thoroughly spooked by the very shady sounding person who answered the phone and seemed half drunk and not the type that should be in charge of a motel. Or even, of operating a phone. I had a meltdown. We were the last ones in the terminal, maybe in the whole airport. Everyone else had, presumably, gone back to their friends’ or family’s homes. My mother was busy begging the gate agent to help us since I was so ill and needed to get home. They offered to call the paramedics for me. People with M.E. love emergency rooms. I said, “If it’ll guarantee me a bed with no doctors bothering me, sure.” My mother said, “She’s not that kind of sick; it’s a chronic illness.”

They told us there were no seats on any flights the next day. I melted down a little further. The gate agent said we could fly out of LAX at 7am or John Wayne Airport at 12:30pm. We chose John Wayne because it was closer to the Anaheim dive that I was trying to get the nerve up to go to, but we couldn’t get the disabled bulkhead seating and we couldn’t get two seats together. Then my husband texted that there had been a mechanical glitch in Expedia’s system and my shady motel reservation didn’t exist. Oh, thank god! Because I had already realised Alaska would not be refunding any $657 for a dump in a different city. But… that left us with the airport floor to sleep on. Melting down…

My sister, A, who was on a camping trip in Eastern Washington with no cell phone service had asked if she could help. So had my friend, Z, who was probably asleep after working and caring for her baby all day. I didn’t think there was any hope. I had tried (ineptly) to look online, my husband had tried from Seattle, the gate agents had tried every contact they had… even the airplane crew was stranded at the airport.

At 10:41pm, my sister dropped what she was doing with her friends to help me, but I knew it was hopeless. I had a a new fun symptom develop around this time: my voice started coming haltingly, words coming out broken. It sounded like I was having a bad neurological problem, staccato speech, each syllable coughed out separately and slowly. It scared me. The incredibly kind and empathetic gate agent helped us get my suitcase and then wheeled it upstairs so my mother could push my chair. She showed us a couch where I could sleep and got us water. I got out my pillow, sheets, eye shades and ear plugs and texted my sister that I was done, signing off.

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That was 11:22pm. At 11:52pm, she texted to say she had found a room in a hotel — not a motel — for $164 — not $657 — across the street from John Wayne Airport — not in Anaheim or Palmdale, which is where the plane crew eventually found a room, 1.5 hours away. How could it be possible? I called the hotel: “Do you really have a room? For two of us? Even if it takes an hour to get there??” “Yes, Elizabeth, I talked to your sister, it’s all ready for you.” Disbelief.

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We packed up and — another angel restoring my faith in humanity — a woman also sleeping in the airport helped wheel our suitcases downstairs and outside the airport. Everything was deserted. The airport was effectively shut down. Tumbleweeds. And, then, as we were searching for a taxi number, one pulled up to drop someone off. Heaven sent. $75 later, we got to the hotel, they had a wheelchair for guests and a man helped us to our room. It was gorgeous. Two beds, a big balcony, swimming pools… By 1:30am, I was in bed. It was glorious. My sister moved mountains from the middle of nowhere and I will never be able to thank her enough.

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I didn’t sleep very much, of course, but I was able to recover more than I could have in the airport. My voice went back to normal, although I woke up nauseous, shaking like a leaf (not blood sugar) and with odd heart tremors. I mentioned how I felt on Facebook and Erik Johnson, of extreme mold avoidance fame, answered: “Take a shower. Wash your hair extremely well. Change into completely different clothes and put the ones you are wearing in a plastic bag.” It was like someone slapped me upside the head. Of course. I am in the habit of not showering in order to conserve energy, but showering is the only way to decontaminate — if not toxic mold spores, at least airplane germs and travel stank (from which I was definitely suffering). So I showered and changed into the only other clothes I had: a fun mix of compression stockings, shorts, tank tops and pajamas. I drank a salt and potassium water and was good to go. The shuttle to the new airport took about 3 minutes (again: how did my sister do it? Right across the street!) and the flight home was uneventful. My body even cooperated having only survived on plantain crackers, Rice Chex and vegetable crisps for 24 hours. And my husband greeted me at the airport with chicken and kale bone broth. Liquid life force.

Home is where the broth is.

Home is where the broth is.

Although I don’t think the journey to see Dr. Chia was worth it (as in, I wouldn’t advise someone else in my situation to go — but more on that in my Dr. Chia post to come) and the rental was not ideal and the journey back was filled with Travel Worst Case Scenarios, I don’t regret the trip at all. I didn’t feel terrible after either flight. I thought they might be carrying me from the airplane and that I might spend days in bed with my meningitis-type symptoms in full flare, but that wasn’t the case. I was actually just fine. The worst I’ve felt since before I left is the last three days and I don’t even know if it’s payback from the trip because it’s so delayed. It could be something in my home. It could just be M.E.

The whole expedition cost a small fortune and it was too much planning, packing and mental gymnastics for the few short days we were there, but I did it. We did it. My mother and husband were unimaginably brilliant and took every precaution to make it successful. And now we know how to do it, if we ever have to again. And I got to spend time with my Momma and create new memories. Priceless.

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Going to California in Pictures

I will post about my visit with Dr. Chia and I will write about successful travel with this illness, but first let me tell you about the trip to California.

On the way to the airport. This was the furthest south I'd been in two years.

On the way to the airport. This was the furthest south I’d been in two years.

On the train in SeaTac airport, feeling like a normal person going on a trip (besides the wheelchair and mask).

On the train in SeaTac airport, feeling like a normal person going on a trip (besides the wheelchair and mask).

You can't get much better than this. Flying over Mount Rainier, leaving Seattle. And an unexpected side effect of my illness: my fear of flying is gone. I'm living on borrowed time, what do I have to fear? :)

You can’t get much better than this. Flying over Mount Rainier, leaving Seattle.
And an unexpected side effect of my illness: my fear of flying is gone. I’m living on borrowed time, what do I have to fear? :)

Driving to our rental: 2 military helicopters flew right over the bridge.

Driving to our rental: 2 military helicopters flew right over the bridge.

Our beautiful garden away from home.

Our beautiful garden away from home.

How do you explain what it feels like to spend time somewhere other than your house for the first time in years? To see the ocean when you never that you would again? To feel alive when you once thought you might not live? There are no words.

How do you explain what it feels like to spend time somewhere other than your house for the first time in years? To see the ocean when you never that you would again? To feel alive when you once thought you might not live? There are no words.

Our first night.

Our first night.

Creating new memories.

Creating new memories.

Going to California

After two years of being housebound, only leaving my house for doctors’ appointments, never going to a friend’s house, coffee shop, grocery store or cinema, never taking a drive to look at the ocean or waterfalls or mountains, my longest excursion being a 45-minute journey to a doctor out of town, I’m going to California to see Dr. Chia.

I made the appointment months ago after rereading No Poster Girl’s advice for the newly diagnosed. I’ve seen 40 healthcare providers in Washington and really, truly feel that the only substantial help they have been is ruling out brain tumours and cancer. Countless visits, horrendous amounts of money and unimaginable energy expenditure… all wasted, unfortunately. Although, my physical therapist has helped my pain but, alas, I must stop seeing him after Monday because my private health insurance coverage ends.

I based my decision to see Dr. Chia mostly on geographical proximity, assuming that we would have to drive wherever we went. His practice is in L.A. I also considered Dr. Peterson (Reno), Dr. Kogelnik (San Francisco) and Dr. Bateman (Salt Lake City). The latter would probably be my first choice, but it seems she really isn’t taking new patients. I battled between Dr. Kogelnik and Dr. Chia, but decided on Dr. Chia mainly because I knew more about him. I have followed my friend Patrick’s experience with Dr. Chia closely, have read Christine McLaughlan’s articles on Health Rising, and have watched all of the ME/CFS Alert video interviews with him.

In a nutshell, Dr. Chia is an infectious disease specialist who believes enteroviruses are at the heart (or gut) of ME/CFS. I will never forget reading Patrick’s account of his ME onset. He said he had surfed at a dirty beach, became ill a few days later, recovered and then got the Tdap immunization and, 5 days later, crashed with ME and never recovered. I swam in a lake in Virginia, came down with a GI illness a day or two later, recovered and then got the flu vaccination and, 11 days later, had acute-onset ME. We had such similar etiologies, although, I believe Patrick was otherwise healthy and, in my case, these came on top of a plethora of other issues such as working too much, never resting, lots of dental work, lots of traveling, bronchitis, vasovagal syncope, angioedema, anaphylaxis, unknown detox issues, IBS-C blah blah blah. But I knew the diarrheal hell was the penultimate cause and the flu vaccination was the shot that broke my immune system’s back. So to speak.

I was in such bad shape last December, I didn’t think there was any chance of my being able to keep this appointment. Five months flew by and my husband and I hadn’t discussed the logistics of the trip or renting an RV or whatever (I don’t even think he knew I had made an appointment), but, before I called to cancel (because, seriously, who goes to California to see a doctor for an hour?), I asked the good people of Phoenix Rising whether they thought I should do it. They were incredibly supportive and answered with an overwhelming YES! Uh oh. Really? But, at this stage, I’d have to fly. I assumed I’d never fly again. I don’t know what a flight would do to my symptoms, let alone the whole trip. So, I asked my family what they thought and they answered with an overwhelming yes and, not only that, but they all offered to help in so many ways: come with me on the trip, stay in my home to watch the dogs, research rentals, help with money, accompany me to the appointment, donate miles for a plane ticket etc. I was flooded with love and encouragement and, suddenly, for no other reason than I wanted to ride the wave of excitement, I decided to go. If not for Dr. Chia, for me. To know that I could leave this house. To create new memories — even hard-won ones — that aren’t these four walls, this bed, this garden. The truth is, I’m terrified and I know enough about Dr. Chia’s treatments to know that it may be a one-off visit and it will probably be a dead-end. But, I’m still going to do it. And I’m going to close my eyes everyday until my departure date and envision safe travels with stable blood pressure, steady legs, no vertigo, no headaches, comfortable body temperature, no chemical or food reactions, no collapsing or swelling or bowel issues, and good sleep. I’ll write more details in my next post.