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 (not too terribly bad 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.

Your Possible Pasts

mmm... a cuppa...

mmm… a cuppa…

It’s 7am on a Sunday and, in a fit of irked defiance, I made myself a cup of fully caffeinated Barry’s tea with milk — real, whole, pasteurized cow milk — and sugar. I’m shaking like a leaf now and don’t know if the sudden addition of dairy to my diet will have any effect, but, oh, make no mistake, there is nothing in the world like a proper cup of tea and I needed that comfort.

I went to sleep last night at 12:30am and awoke at 4:30am with my heart pounding from a stressful dream and I never went back to sleep. This isn’t uncommon — one of the sleep issues I’ve had since being ill is waking up at the end of every REM cycle. My sleep doctor couldn’t find any reason for it (apnea events, restless leg etc.) and it means that I remember multiple dreams every night. Unfortunately, they are all too often nightmares — tortured events that almost always revolve around my illness: I am being chased by murderers, but I am too sick to get away. My dogs are in peril and I’m too weak to save them. I’m homeless and being accosted by faceless strangers on the street and I have no energy to fight and no voice to argue. No voice is a recurring theme — the inability to yell for help, the inability to defend myself.

This morning, the breathless, heart-pounding awakening was caused by a dream about a friend who accused me of something I didn’t do 17 years ago. I won’t get into details because it is buried just enough to not engulf me in a tsunami of emotion and, when I finally deal with it, it will have to be parsed out in careful digestible bits, probably with my therapist. But, I think it is time to confront it. She was a friend I loved very much and with whom I had years of history. She is actually one of my facebook contacts because I don’t like letting anyone go, but my stomach turns every time I see her interacting with my old circle of friends, a combination of bitterness, jealously, embarrassment and mourning for the loss of that closeness and confidence in childhood loyalty. The situation actually changed the course of my life because, in the wake of it, I postponed a move back to Ireland and wound up meeting my husband soon thereafter.

Although I never believed it before, it occurred to me recently that maybe all this dealing with the past bullshit has some merit. In 2012, my counselor at the time tried to broach the subject of anger or hurt that I might be harbouring from my past and I shut it down. Emotionally, I felt fine until this horrific illness and all I’ve needed and wanted was help dealing with the abrupt loss of life as I knew it. Who cares about my parents’ divorce when I’m trying not to die every day and I want to die every night? But I’ve come through the acute stage of ME and have accepted where I am. My fear is justifiably about the future and the present feels pretty… matte. But the damn past has started gurgling up in my dreams. Last week I drempt that my old boss instructed me to open a bunch of restaurants in quick succession and I was too sick and ineffectual to do it. I woke up in a cold sweat of anxious panic and blunt anger at a job that always asked too much. There are demons in there.

So, today I’m starting with an email — or at least the contemplation of an email — to my old friend. Maybe I don’t need to go into the extended rant that always surfaces during those half-awake moments when I start to compose the letter. Maybe I just need to find my voice and say, for the record, I didn’t do it.

Title Credit

My Visit to Dr. Chia

Okay, okay, stop begging, I’ll tell you about my appointment with Dr. Chia. I can’t believe this took me so long to write, but I’ve been plugging away a little bit, day by day. I can save you some time and tell you straight away that it was not worth the trip. I don’t really feel like I learned anything new or found access to treatments I couldn’t have tried without him. That doesn’t mean I regret the trip, it just means, if someone else in my position asked my advice, I would say, “Save your money and your energy.” The journey, for me, became the challenge early on. I wanted to know if I could do it. I wanted to test my boundaries, I wanted to see if I could leave these four walls and find out just how bad the payback would be. It was also about testing a different location, spending time with my mother and giving my husband a break. So, I had a lot of different fuels feeding the engine, if you know what I mean and, without even one, I might not have made the trip. In the end, because I left early and Dr. Chia didn’t really give me anything, it was purely the challenge. And I’ve decided that is enough. It bolstered my confidence and reinforced how resilient I am — we are.

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With my mother outside Dr. Chia’s office.

Here’s what I thought about Dr. Chia before seeing him: I knew his son was sick with ME and recovered. I knew that Dr. Chia believes that enteroviruses are the root cause of this illness and that he has conducted studies that supported his theory, but the rest of the ME research community hasn’t taken up that torch and done bigger, better studies to replicate. I thought he would offer Equilibrant, his Chinese herb formula with which many people have had some success, and he might consider antivirals. My main impetus for seeing him was to get the testing that none of the other 40 doctors I’ve seen has done and also to see whether he thought I was a candidate for antivirals. Of course, I forgot to ask him about antivirals because I forget everything when I’m in a doctor’s office.

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My mother holding the massive binder of test results that we carted down to California and then never opened.

My appointment was at 4:15pm on a Friday, so I was worried about rush hour and LA craziness, but Google maps was accurate and it only took us half an hour to get there. His office is in a nondescript brick building in a sort of strip mall in Torrance, CA. I’m a big fan of Stephen King and liked that the office was in an area named after the possessed protagonist of The Shining. ;) The waiting room was barren. We (my mother and I) waited about 20 minutes and then went in and had the normal nurse stuff done. I noticed she wrote on my file that I was there about “chronic fatigue” and I mentioned that it was actually ME ~ or even write “CFS”. She said, “Well, it doesn’t matter because he only sees patients with your condition.” Sigh.

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We waited probably about another 15 minutes for Dr. Chia and, when he came in, he was off like a rocket. He did not stop talking for an hour and 15 minutes. After about 10 minutes, he said I could record him, thank god, because I didn’t remember to ask and I have no memory of anything he said in those first few minutes. Dr. Chia was kind and pleasant. Not in any way intimidating or arrogant. I guess I would call him dogmatic without the ego. He seems slightly frustrated that nobody else realises enteroviruses are the root cause of so many chronic illnesses and told us many stories of other patients and studies that support his contention.

A few weeks before my appointment, I sent him a letter, a chronology of my health history and a list of my symptoms. He said that was extremely helpful and asked me very little in person about my illness, instead, he just ran down the list and discussed how my immune system had collapsed. I couldn’t help thinking none of this needed to be done in person since I was basically just a set of ears, but I know the law says I had to be there in the flesh. He also did a quick physical exam and neurological work up.

Here were his main points about my history:

  • As an infant, my immune system shifted into Th2 dominance with pneumonia and ear infections and asthma, which is an inflammatory disease. Instead of just fighting off infections with an increase in the Th1 branch of the immune system and then resetting back to equilibrium, mine shifted into Th2 and has been continually off kilter my whole life as it got hit by different viruses (bronchitis, ill while traveling in Central America, viral gastroenteritis from lake in Virginia etc. etc.). He gave an example of people who encounter the polio virus: just like the lake in Virginia, only a few out of hundreds exposed to polio will become crippled and the difference is the amount of gammaglobulin I (and others) have and my compromised immune system. He said enteroviruses are the second most common infection after the common cold and that viruses are often transmitted through water. He gave the example of Joseph Melnick at Baylor University who studied viruses that live in water from sewage contamination and spread to humans through shellfish, showers, colds and swimming. He also said the Russians wrote a paper that concluded the most common risk factors for contracting meningitis are swimming (30%), camping (20%), contact with sick people, and drinking well water.
  • Doctors repeatedly prescribed antibiotics for viruses and worsened my situation. The dark circles under my eyes are typical of this.
  • With Th2 dominance, comes allergies.
  • Night sweats are a classic sign of Th2 dominance ~ along with pain and sore throats, they are my immune system trying to fight off the viruses. But, “viruses are like weeds” and replicate exponentially. He said post-exertional malaise happens because activity causes viruses in the muscles to become metabolically active and replicate, causing pain. “The more activity you do, the more viruses replicate.”
  • Tonsillectomies are very common in ME because the body is fighting off the viruses and causing chronic sore throats (my early teenage years).
  • Vaccinations commonly cause ME and relapses (I took every vaccination I could get my hands on because I thought they were protecting me and didn’t realise they’re not for everyone).
  • He suspects a brain stem issue because of vasovagal syncope history, neck problems and dysautonomia symptoms.
  • He said that he has seen cases of ME caused by invasive dental work alone, so he thinks my history predisposed me, but having acute bronchitis, viral gastroenteritis, lots of dental work and then the flu shot all in the space of 3 months definitively tipped my immune system to ME. He said, “The flu vaccination is what did you in.”
  • My tender abdomen he said was my terminal ilium and that was typical with enteroviruses living in the wall of the small intestine.
    He said I might have contracted new infectious illnesses in the past 3 years, but, whereas healthy people fight off viruses locally (i.e: facial symptoms with a cold), I fight it off systemically and all my ME symptoms flare. My mother and I heard loud and clear that contracting another virus would be incredibly dangerous for my recovery and my future health.
  • He said that there was a sewage leak into the lake at Incline Village in 1984, before the initial ME/CFS outbreak and that everyone got sick in the summer when they jumped in the lake. He said he is the only person in the US working on enterovirus research and he has found the virus in the blood and stomach lining of patients and has also done studies (injecting mice with enteroviruses and those that were initially immune deficient died). He said the CDC will soon be reproducing his work, he hopes.

Blood test results:

  • My T-lymphocytes are okay. CD4 is a little low.
  • Echoviruses, chlamydia pneumoniae, CMV, Creatine Kinase, IgA and CRP are all negative or within range.
  • Coxsackie B 4 and 5 are high. Type 4 is very high.
  • IgG (gammaglobulin) is low. All 4 subclasses. These are the most important antibodies to neutralise enteroviruses and maintain a healthy immune system.
  • HHV 6 IgG antibodies are very high.

Treatments:

  • He mentioned interferon, but said it is a very difficult treatment and short-lived.
  • He mentioned Epivir, an HIV drug that helps about 30% of the time, but didn’t want me to consider it now.
  • He told me to watch out for lakes, rivers, shellfish and not to drink the LA tap water.
  • He said I could try sublingual vitamin B12, coQ10, magnesium and vitamin D (all of which I take except B12).
  • The most important treatment he thought I needed was 5 – 15 grams of intravenous gammaglobulin to replace what I don’t have and modulate my immune system. He kept reiterating how much sicker I would be if I caught another virus, so he thought I should get IVIG twice a year and again whenever I travel anywhere (although, he said I probably shouldn’t travel). He wanted me to see an immunologist to get it, but it’s very expensive and the immunologist would want to inject me with a pneumonia vaccine to determine whether IVIG was necessary by my immune response two weeks later (I find this all very frustrating and wish that Dr. Chia could just give me a requisition form to take to a Seattle hospital so I don’t have to go through the rigmaroll of finding another specialist to determine that I need a treatment that this specialist says I need! It’s also frustrating because I won’t let a vaccine near me for the rest of my life and some random immunologist probably won’t take Dr. Chia’s word for it). If I can’t get IVIG, he said I should get 2 mililiters of intramuscular gammaglobulin, which will last for a few months.
  • He also gave me Equilibrant, his own proprietary blend of vitamins, minerals and herbs, and told us the story of his son’s recovery once he was taking 9 pills a day. He wants me to start on ¼ pill for a month, then move up to ½ for another month. I should expect an increase in my symptoms for 7-10 days. My problem with Equilibrant is that it has a bunch of fillers and crap in it: Dextrose, titanium dioxide, Yellow #5, Blue #2, Carnuba Wax etc. I still think I’ll try it, but I haven’t gotten the nerve up yet.

Honestly, the best thing he said to me during this whole appointment was, “You’ll get there.” He said since I’m so much better now than I was last year, my body is recovering and I just have to try to avoid getting another virus. After hearing Dr. Peterson say that he has never had a patient recover, it was nice to hear Dr. Chia say that I would get there…. I know “there” will not be where I was pre-ME, but I’ll take pretty much any there over here.

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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