Believe it or not, an update!

I have so much to write about, so much to catch people up on and document, but the longer I go without posting, the harder it feels to break the dry spell. Each month, I think, “Write that in a blog post, you’ll want to remember that,” but I never feel like I can “waste” the time. Especially in the last 6 months. If you’re friends with me on Facebook, you know that I have lost all available energy for months to fighting horrific healthcare battles. Energy that could have been put towards conversations with loved ones, time playing with my dogs, reading or writing…

So here’s a recap: From November, 2015 to around August, 2016 I was slowly getting stronger from my immunoglobulin infusions. I estimated that they brought me up from about 15% of normal functioning to about 20%. That 33% increase was miraculous. It didn’t exactly change the way I lived my life (I still had the same symptoms, was still mostly housebound, still had to manage energy carefully), but it changed my control — things became predictable, which reduced fear and let me branch out. Payback was shorter, not as scary, I could do more and knew I wouldn’t make myself permanently worse. That last point was life-changing for me. For 4 years, it felt like anything I did made me worse, I was desperate to hold on to the functioning I had and couldn’t take many chances without being forced down a notch — and I was always so scared that the new lower notch would be forever.

So, last year we went to the Washington coast for 5 days and I didn’t feel terrible. I had two friends visit me at my house and we talked for hours and I was okay. My family came to Seattle for their annual vacation (2 brothers, sister, mother, spouses and 7 nieces and nephews) and I was able to go to their rental house 4 days in a row for extended visits. This was the turning point, though, I think. I left it all on the stage those 4 days with my family. Friends with chronic illness, you know what I mean — it’s such a difficult act to appear normal and, from what I’m told, I gave a great performance that long weekend. Each day I came home and literally crawled on all fours to my bed. I lost 3 pounds in 4 days because between each visit all I could do is lie in bed and hope for a enough recovery to try it again. There wasn’t a moment that the payback wasn’t worth the incredible time I spent with my family. I’ll have to write a whole blog post on it one day. My nieces and nephews are everything you want kids to be — sweet, kind, honest, inquisitive, funny. No bratty-ness, no meltdowns, no selfishness. My brothers are doing something right.

Right after that visit, in August of last year, I started to nosedive. I had an increase in migraines, sore throats, exhaustion, muscle pain, unstable blood pressure. I was trying out (very expensive) hyperbaric oxygen treatments at the time and thought they were either causing or exacerbating my symptoms, so I stopped those, but continued to go downhill. In November, I started the descent into health insurance hell that lasted about 4 months. I’m not going to get into it right now. There’s too much to tell and it’ll make me shake and cry angry tears as I type, which I’m not up for. Suffice it to say it is an evil, vindictive, nonsensical, black hole of a system and nobody has accurate information about anything when it comes to healthcare for people under 65 on disability. And, even if they do have the knowledge, it seems the vast majority of health-related representatives (or is it all humans? I’m guessing it is) are inept, lazy, selfish and genuinely couldn’t care less about helping someone in need. My friend Michael had one of these phone calls where he wound up saying, “How do you sleep at night?” to the representative who was outright lying to him. Essentially, that’s how I spent 4 months — all available energy every day dedicated to battling my brain symptoms so I could continue to micromanage every person who held my health in their hands, taking copious notes and making enemies, as I waded through the morass of phone transfers, misinformation, hours of stuttering hold muzak, false promises about call backs and looming deadlines… While thinking, how do they live with themselves? Not to mention incompetent, petulant doctors that I need so I can’t I leave them.

When my mother came to visit after Christmas, she said it might have been the sickest she had ever seen me. I wasn’t even close to the sickest I’ve been, but it still says something about the severity of my crash (to be fair, I had allowed myself to have one of those total meltdown, let-it-all-out, “I’m so sick of being sick” sob-fests in front of her — the kind that I usually rein in because they can make me more reactive and wipe me out — which can’t be easy for a mother to witness). My strength started to get marginally better in February. I think it might have been helped by an increase in my thyroid medication, but it was kind of a double-edged sword because I also became horribly hyperthyroid for about 3 weeks before I realised what was happening. I had also stopped going to my weekly appointments (physical therapy, myofacial, counselling etc.) and had stopped my immunoglobulin infusions because I lost insurance to cover them, so perhaps the break from obligations and weekly medications helped me gain strength.

This spring my husband, dogs and I drove to California for an appointment with Dr. Kaufman at the Open Medicine Clinic and we stayed 6 weeks for a holiday and to test how I felt in a different climate. I will write about those big events in another post. What I really came on here to document is how I’m doing now. I want to keep track of what I can manage and how bad the payback is when I indulge in social time. Last November I went out to brunch (out!) with 4 old friends (you can imagine what it meant to me to be invited). I’m pretty sure I appeared normal throughout the 2-hour meal, but payback was vicious. My calendar notes say: “very bad today, body totally shut down, in bed, shaking, crashing, crying, guts feel swollen and full of bricks, heart, muscles, eyes burning.” It lasted days. In early February, my brother was at our house for 7 hours. I spent his visit relaxed on the couch in my pjs, but we talked and laughed like normal people, animatedly, and I didn’t rest once (unheard of a few years ago). I went to bed that night flying high, so happy from our conversation, so grateful to feel fine… And then, 3 hours later, woke up in the middle of the night feeling poisoned, shaking all over. My calendar says: “severe payback, swollen throat, can barely swallow, hard to breathe, every muscle in pain, bad stiff neck and headache, shooting pain in bowels, nose stuffy and runny.” The worst of it only lasted about one and a half days.

Yesterday, we had family over for brunch to celebrate my birthday. Although the whole shindig lasted 3.5 hours, there were only about 2 hours during which everyone was here — 4 adults and a child, not that many people. My friend Z said I looked great, she was so excited by how different it was from other years. She said, “I know you’ll pay, but today was normal.” This is everything I could hope for, BUT… the big but… But, it was hard. I can power through now, I have the ability to put on an excellent performance. If my neurological symptoms stay away, I can do quite a bit physically (although standing for a long time still causes excruciating pain). So, yesterday I showered, dressed, got out plates and cutlery, made some waffles and chatted with my family. That’s about all I did before things got difficult. There’s this weird thing that happens when you’re ill, but you’re putting on the normal act: You lose time. Or at least I do. Do any of you? For example, I remember everything about the first hour yesterday — when I was chatting with my husband and sister-in-law. Then our friends and their daughter arrived and things are a little fuzzier. I remember the conversations, but they’re not in sharp focus. Then my sister and her dog arrived, right around the time I wanted to make the waffles and apparently that’s when my mind went into … not quite “survival” mode, but “keep it together” mode: I was talking to 2 people in the kitchen while trying to focus on cooking and, although I made good waffles and I’m sure I said the appropriate things at the appropriate times during the conversations, I cant remember any of it clearly and couldn’t tell you what we talked about. Same thing while we ate — I clearly remember how delicious the food was (of course I do), but recalling things that were said is akin to trying to remember conversations I had while drunk, it’s murky, and it worries me that I was rude or unresponsive — to my favourite people, who made the effort to visit us, no less.

When I was saying goodbye to them, I could barely see. My vision was tunneled, I had a wicked headache and my brain was a buzzing scream, but being the fastidious person I am, I couldn’t not load the dishwasher. This tipped me over the edge. I was staggering around the kitchen, using immense effort to coordinate my muscles and concentrate enough to lift and place dishes. My eyes weren’t tracking properly, my heart rate was running high and my legs were burning terribly, but I just wanted to come to an end point… Stupendously stupid stupidity. I slid to the kitchen floor, panting, crying, literally unable to walk out of the room. I slurred: “Nothing is worth this. I was trying so hard to be normal, but no social time is worth this.” My husband said, “Why don’t you just be honest?” and I said, “Because THIS is honest.” On the floor, weeping is honest. He helped me to the couch, I was having a hard time sitting up, it was just utter energy depletion, muscles unable to work. I immediately fell asleep in a sort of emergency power-down. I started to feel a bit better about 5 hours later and today I’m okay besides another bad headache and stiff neck. That’s the difference now — when it hits, it hits hard and scares the bejeesus out of me, but it doesn’t last long. So I take it back, it was worth it. I ate decadent food in the warm sun in our beautiful garden with some of my favourite people on the planet (and to Z’s credit, she tried to stop me from over-exerting myself over and over and I bullheadedly kept telling her, “No, I want to do this! I’m fine!”). But of course it was worth it and I’ll keep trying to make this life have more life in it and repeat to myself during the scary times: this, too, shall pass.

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Update… Aborted. Again.

I’ve been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean task to catch up and my symptoms have been such a rollercoaster, that I never seem to find an opportunity. When I have some respite, I cook, bathe, deal with insurance and appointments, tackle laundry, play with my dogs, sort through finances etc. Aaannd… I just hit a wall. Just like that. As I typed, I could feel my brain clogging up. I picture all the little ATP molecules grimacing, gasping and dragging their feet like the characters at the end of Stephen King’s story, The Long Walk, dragging themselves along until collapse is inevitable. It’s a shocking feeling. Mentally, I was really clear for about an hour this morning. Felt like I could write. Dreamed up grand plans for my day (make granola! call a family member! blog post!). I answered a few emails, talked to my husband a bit and then wrote this… And it’s gone.

My neurological symptoms are horrific. “Brain fog” is the best of it. I’d take lack of concentration, not being able to find words, memory problems any day over what I’ve been experiencing this year. It feels like physically–physiologically–my brain grinds to a halt. My eyelids get heavy, my vision gets blurry, my ears roar, I start slurring. As I’m writing this, it’s getting worse and there’s no pushing through. My body feels okay, my stiffness, weakness and pain levels are manageable this morning, but I can’t push through this neuro stuff. Even if my body feels capable of going to the park, my brain insists on being in bed with ear plugs and eye shades. I can’t even watch dull tv or listen to a meditation. It’s incredibly frustrating and quite alarming. And, in a clinical way, I am fascinated by the trajectory of my symptoms over the past four years.

Year 1 was horrific viral, malarial, drenching sweat, nighttime hell and constant chills. That ended for the most part in Year 2 and became predominately “nightly flu” and pain, pain and more pain. Year 3 was the best of times and the worst of times: a bedbound, suicidal winter (when I finally got the permanent ME/CFS sore throat) turned into a much more stable spring and summer after my pain eased up. Year 4 started in a deep, reactive crash and became the year of crippling neurological symptoms. Year 5 (which started at the beginning of this month) so far is all over the place. My main focus is to work on the symptoms that have been with me throughout all of these years: sleep dysfunction, headaches, hypotension and infections. Plus, social contact would be good.

I have to power down now. The long-awaited update will come soon, I hope. I have so much to say.

Mast Cell Madness.

I’m officially terrified by my mast cells because Christmas heralded another sick, sick few days. Almost as sick as Thanksgiving, so I’d have to say the 2nd sickest night of my life. However, this time, it all started with my tongue swelling up, which gave me more insight into the mechanism behind it.

I sometimes wonder if all my health issues stem from mast cell activation syndrome. I can tell the difference between ME symptoms and mast cell reactions, but, still, there’s this little seed in my brain that says, what if they’re at the root of EVERYTHING and I should be spending my time finding a doctor with MCAD expertise on this side of the country (it doesn’t seem to exist in Seattle)? I don’t do this because I am generally stable. On a day-to-day basis, I’m not having reactions — unless, of course, many of my chronic symptoms have mast cell degranulation at their core and I just don’t realise it.

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My health issues started with full-blown anaphylaxis, out of the blue, 9 days after my 28th birthday. Doctors were hopeless and gave no advice back then, not even daily preventative antihistamines. The common denominator was alcohol (but not every time I drank, so it was confusing), so, after the last trip to the emergency room in Dublin, where I almost died, I finally quit drinking and haven’t touched a drop in 13 years.

Before that, I had swelling in my eyes and hands and a severe edema episode once or twice that I didn’t really think much about. I linked it to Asian food, so stopped eating that and MSG and didn’t look any further into it. This was eventually diagnosed as autoimmune urticaria and angioedema and I was told to take Zyrtec, but didn’t want to medicate daily for an intermittent condition.

I’ve always had trouble with my periods — crippling dysmenorrhea — but they got progressively worse until I collapsed with syncope and shock 13 days after my 32nd birthday and was taken off in the ambulance. For 6 years, no doctor gave me any advice until, finally, an OBGYN told me to dump salt on my tongue. This doesn’t stop the collapses, but it certainly helps. These episodes continue to happen randomly to this day, always on the first day of my period and are, without a doubt, mast cell mediated, presumably low-grade anaphylaxis (very low blood pressure and pulse, bowel problems, syncope, shortness of breath).

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I have a spot in my throat that has itched for years. It was actually the thing that lead to diagnosis of my toxic thyroid goiters and Grave’s Disease because I mentioned the itch to some random doctor who palpated my throat. I’ve now realised it signals reactivity in my body at a very low level. It’s almost always there, but, when it’s not or when it’s very bad, I pay attention.

I was flushing badly for years, thinking I had developed bizarre self-consciousness, but the self-consciousness was actually a result from flushing and having people point it out! When I was diagnosed with Grave’s, I thought it was a symptom of that, but it never went away after ablation.

Of course, in retrospect, there have always been issues I have dealt with, which may or may not originate with mast cells: thyroid problems and Raynaud’s can be a result of mast cell disorders. Also, constipation, headaches, low blood pressure, and temperature sensitivity (all of which got much worse in recent years). Finally, many of my ME symptoms could also be from MCAS: fatigue, joint and tissue pain, eye pain, vision problems, vertigo, episodes of low body temperature, scent/odour/chemical sensitivity, sinus problems, cognitive impairment, hair loss, decreased bone density (I have osteopenia, on the cusp of osteoporosis), shortness of breath, medication reactions, malabsorption, and tinnitus. See a list of signs and symptoms here.

It would be wonderful to be able to manage and control any of these issues, but none of them scares me like the nights I’ve had recently, not even full-blown anaphylaxis. I’ve tried so hard to figure out my triggers, but they are moving targets. Tongue swelling and angioedema are obvious, as is the very specific breathing difficulty you get with anaphylaxis (it is nothing like asthma or wheezing from an infection). I don’t get daily hives and itching like many people. My reactions now are all about the histamine bucket and completely dependent on where I am in my cycle and what is happening in my life. I may be able to eat anything one week and then suspect that those same foods are giving me sinus trouble, insomnia and a jaw ache a different week. My chronic daily headaches, tinnitus, brain fog and exhaustion could be from food choices, but I’ve never been able to pin down any causation. My diet is very low-histamine compared to normal people and how it used to be, but I still allow myself chocolate, coconut, store-bought chips, beef, almost all fruit, including dried and many things that others avoid. Could these things be contributing to my problems? Yes, but, without a definite correlation, I don’t want to eliminate foods. Once you’ve experienced anaphylaxis, “reactions” like a runny nose, constipation or aching hands are quite ignorable. The only thing that consistently caused a reaction was alcohol and my periods. And, now I can say with certainty, holidays and events, no matter how careful I am.

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I prepared for Christmas over the course of a month and a half, slowly bought presents and wrapped them, slowly wrote some Christmas cards, slowly got the spare room ready for my sister, slowly did laundry — over the course of weeks! Didn’t overexert myself at all. There was no excitement, no activities. My sister and her small dog came over, we watched tv and opened presents. I had rested multiple times throughout the day and the only not normal thing I ate was half a tiny piece of fresh King salmon, which had been brought in off the docks that same morning and, I was told, caught the day before.

My tongue started to swell up after dinner. By the late evening, I had gotten upset for really no good reason (which has historically happened with my mast cell reactions) and was flushing. I had a bad reaction to about 15mg of Benadryl a week or two prior, so I was scared to take a decent dose on this night. I bit a dye-free capsule and put a drop on my swollen tongue and went to bed. At 2am, I awoke with the same evil that I experienced on Thanksgiving and the night after starting Cromolyn (before going to the AirBnb rentals back in September — it was a few days before my period that time, too). I was shaking so badly, I couldn’t lift the water glass, I was drenched in sweat and had weird runaway chills coursing through my body. I crawled on my hands and knees to the bathroom, which scared the shit out of me because, through all the worst of ME, that’s only happened once before. I fell into harrowing nightmares and woke up gasping for breath over and over, feeling poisoned and infected. I dreamt that I was sick and dying and my husband wasn’t paying attention or taking it seriously. I dreamt that I was sick and dying and my mother laughed at me (this isn’t remotely based in truth, this is my terrified mind not knowing how or where to get help). I dreamt that my dog’s neck was broken and I was carrying him to get help, but I was sick and dying and couldn’t do it. And, finally, I dreamt that I was lying on the floor begging my husband over and over: “Please kill me. Please kill me. Please kill me.” I woke up sobbing and so wrung out.

That morning, my period came 5 days early. You better believe, if I had known my period was going to arrive Christmas Day, I might have cancelled Christmas. Or at least postponed present opening for a day. And definitely not eaten even the freshest salmon.

In the past, my anaphylaxis episodes went like this:
My friend A’s birthday party.
My friend C’s birthday party.
Oktoberfest.
Easter party.
C used to joke that I was allergic to fun. I can’t believe he was right. I collapsed and had the paramedics called twice while my mother was staying with us and, also, when my best friend was here from Ireland — both were “events”. I started to get paranoid that, psychologically, I was somehow causing my system to crash when there were visitors. But, every single one of these times, I had my period. There were only a few anaphylactic episodes that I can remember when it wasn’t the first day of my menstrual cycle. EVENT + MENSTRUATION = MAST CELL MELTDOWN. But I think I only really and truly started to believe this 100% on Christmas.

So, Christmas day is a total haze. I crawled downstairs a few times to eat and try to put on a good face, but I don’t remember much and dozed most of the day. Like Thanksgiving and September, however, I bounced back quicker than I could have ever anticipated. That night I kept marveling, “How am I speaking? How am I sitting up? How am I alive?” When it’s bad, you honestly want to die. When it ebbs, the human spirit kicks back in shockingly quickly and you just get on with it, until the next time when you are surprised anew at just how bad the bad is. I didn’t even really modify my diet. I continued to eat my almond butter, coconut ice cream and drink bone broth and tea (all high-ish histamine). If anything, I felt more, Oh fuck it, how much worse could it be? At this stage, I’m much more scared of menstruation and engaging in any sort of event — even one in my house, in my pajamas, with only a single guest.

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I am currently putting together an informational kit (in a bag that was donated to me by a member of one of my groups), so my husband has something to grab in the event of an emergency. My dilemma is that I’ve managed to avoid drugs all this time (never had to use my EpiPen), so I have no way to premedicate for things like plane flights, dental work or necessary procedures like a CT scan or colonoscopy (which my doctor has wanted me to get for years, but I refuse because I’m worried about reactions). I have no safe protocol. 13 years ago, I got IV diphenhydromine for anaphylaxis, now I react to 15mg of Benadryl! 5 years ago, I had IV morphine for dysmennorhea, now my breathing shuts down with a crumb of hydrocodone or codeine. What would happen in a real emergency? If I need surgery? Knock on wood, toba toba, ptooey, ptooey. Once I have everything compiled, I will post it here.

Having said all that, I’m really in quite a good place, feeling happy and hopeful about the new year. Maybe because I realise that these reactions are mast cell degranulations and not ME relapses and that takes some of the fear away. Somehow dying from anaphylaxis is less scary than becoming permanently bedbound with ME. Perhaps only people with both illnesses will understand that. So, here’s what I did New Year’s Eve:

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As well as resilience, forgiveness, positivity and optimism, I’d also like to request that 2015 doles out truckloads of health, wealth and happiness to all of us. That’s all. That’s not too much to ask, right? 🙂

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.

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.

Doctor Love/Hate

A few weeks ago, I had the follow up with the rheumatologist I saw in January. The one who came highly recommended by multiple doctors I’ve seen. The one who spent over an hour and half with me at our initial appointment. The one who wrote the most thorough and accurate notes on my history and even sent them to me. The one who ordered spine x-rays, a DEXA bone scan, blood work for inflammatory bowel disease and who did a quick ultrasound of my shoulders. The one who knew about the pretty much unknown mast cell activation disorders and even knew most of the tests to order. The one who wrote a book called, “You Don’t Look Sick.” … So, you’d think he’d get it.

At one point, he asked, “Why are you in bed so much?”
I wasn’t sure how to answer. This was my second appointment in a row; I’d previously spent a useless hour with my therapist, not having anything to talk about and feeling out of place. Maybe my brain was ticking over even slower than I had realised.
“Because I’m sick…”
I thought he understood my illness because of the thorough chart notes, but I’d have to reread them. Maybe he didn’t understand the key part about ME and post-exertional malaise (second worst description of anything, ever, after chronic fatigue syndrome). Maybe he didn’t quite get that my battery dies very quickly and, if I push through, I’m in a world of hell and the battery never quite fully goes back to where it once was.
He said (and this is a direct quote), “If your hope for the future depends on getting disability, you’re not going to get out of bed.”
And then my brain blew up.

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I know many, many people have dealt with this sort of thing before — this blatant skepticism about their illness — but I hadn’t. Nobody had ever questioned me to my face. I didn’t really hear anything else he said after that because I did a white-out with fury. This manifested itself with me bursting into tears, unfortunately. I told him I wanted to make it clear that I wasn’t in bed to try to get disability. He said something along the lines of: “It may not be that you’re a malingerer [I remember that word clearly], but that you subconsciously are staying in bed because you need the money.”
Wow.
I was raging. After waiting two years to apply for disability in the desperate hope that I could go back to work… after going from a happy, high-functioning person to practically an invalid… it was too much to think this might cross somebody’s mind. Why would I want to give up my whole life to get 1/10 of the money I used to make? I cried the whole way home. I kept thinking about it and crying the whole evening. Granted, I was premenstrual, but my anger can’t come out in yelling and stomping anymore, so it just bubbled out in tears. Would he have said that if my husband were with me? Would he have said that if I were bedbound with cancer?

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There was slight vindication when he told me I had to try increasing my steps and I told him I have: from 500 in January to 1500 now.
Then he said I had to try “bicycle yoga”, lying down and I said, “I do! I try to do yoga poses and gentle stretches whenever possible.”
Then he said, “You need to come in here with a list of your current symptoms, your meds, your questions and concerns.” I waited for him to finish drawing an example of the page he wanted me to write and then I told him: “I did — it’s on the back of that sheet of paper.”
“Oh, I didn’t look at that,” he said. “A+.”

Amazingly, after this conversation, he told me my clinical diagnosis was mast cell activation syndrome (MCAS) and prescribed Cromolyn.

I smoldered for a week and then went to see my therapist who works in the same clinic and has known Dr. O for 37 years. I let loose on him. I railed for a full 45 minutes and was completely supported and validated. He said he’d seen it happen before and that, typically, when Dr. O is called out on his behaviour, he is blind to what he did and remorseful. He read me the notes that Dr. O had written and they were great — he wrote that he wanted to treat me for MCAS and also continue to look at inflammatory conditions, that I wasn’t depressed… There wasn’t a mention of ME in the notes and that’s how I wanted it. I went to him in the first place for his diagnostic talents, to have someone search for other possible answers. So, I’ve decided to give him another chance. My therapy session completely calmed my outraged soul and I’ve let it go. I think I will write Dr. O a letter when I feel up to it, explaining professionally why he was bone-headed and offensive. I’m actually looking forward to seeing him again, so I can be the calm, assertive person I normally am with doctors.

So, about MCAS: I haven’t dealt with scary symptoms (anaphylaxis, tongue swelling) in years and I react terribly to most medications, so I’m hesitant to start treating with mast cell stabilizers, histamine blockers or other anti-inflammatory drugs besides Prednisone. However, I wonder how many of my daily symptoms could be caused by mast cell problems (GI issues, bowel swelling, headaches, fatigue, brain fog, sinuses, pain etc.), so I’m also excited to have this diagnosis and the treatment options available. There’s also a teeny tiny part of me that whispers, What if your only problem is MCAS? What if mast cell problems caused everything from anaphylaxis until now? I don’t believe that — of course it’s multifactorial and involves many different pathways: immune, neurological, endocrine, gastrointestinal, vascular — but, there’s still a seed of excitement that something might make a difference.

May 12: My 20 years with Myalgic Encephalomyelitis

Tomorrow is International M.E. Awareness Day. Everyone should read this post by Mary Schweitzer on her blog, Slightly Alive. It is informative and moving and should light a fire in everyone’s souls to raise awareness and find justice for so many patients and their family members who suffer from this disease.

Sunday, May 11, 2014

May 12: My 20 years with Myalgic Encephalomyelitis

I have had Myalgic Encephalomyelitis, or M.E, for 20 years.  The CDC does not recognize this.  They insist that I have a condition called “Chronic Fatigue Syndrome,” or CFS.  I have M.E.

At the age of 44 I led a charmed life.  I had been married to the love of my life for 20 years, and we had two lovely children.  We were both college professors – a deliberate choice that allowed us to do what we enjoyed – researching and teaching subjects that deeply interested us – while having the income to live comfortably (because we both worked) and plenty of time to spend with the children (because of the nature of academic life).  I had tenure at a good university, although my sights were set higher than that.  I had a working relationship as an associate fellow with a research institute at an Ivy League school, which enabled me the luxury of being around the best and the brightest in my field.  We traveled all around the country going to each other’s conferences, often taking one of the kids along.  We also went to four Olympics, two final fours (NCAA basketball championships) and countless playoff games, several World Series, and, eventually, twenty years of baseball AllStar games.  We skied in the winter and went to the beach in the summer.  It was a charmed life.

On October 24, 1994, I went to my office to grade exams and suffered a blackout.  When I came to, I could not understand one word in the Bluebooks in my lap – they might as well have been written in Cyrillic alphabet.  It took time – and concentration – to be able to stand.  I had fallen down the rabbit hole; my life would never be the same.

Over the next four years I suffered from severe pain in the back of my neck and behind my eyes, 24/7. My muscles ached, and I had migraine-level headaches.  I had ataxia, dyslexia, sensitivity to light and sound (to the point I had to wear sunglasses all the time), tinnitus, partial paralysis, memory loss, disorientation, expressive dysphasia, and massive confusion.  My family took care of me.  Obviously, I could not drive, and by 1996 I was using a wheelchair when I left the house (which someone else had to push).

I was lucky to have a family to take care of me, because I could not take care of myself.  I also soon discovered an Internet discussion list of fellow sufferers, and was referred to a very good specialist in Washington, Marsha Wallace (who unfortunately hasn’t practiced since 2000).  Dr. Wallace taught me to live within my energy envelope and helped with sleep disruption and NMH/POTS, but I continued to deteriorate.

In the fall of 1998, Dr. Wallace introduced me to Dharam Ablashi, a researcher who had just retired from the National Cancer Institute at NIH.  Dr. Ablashi had been the co-discoverer of HHV-6 and it’s two variants, A and B, while working with AIDS.  I had the version the AIDS patients did – Variant A – and my viral load was ten times the amount used to diagnose an active infection.

I would also test positive for active EBV or mono (which I had more than once – most notably in 1990, four years before my collapse, during an outbreak on my college campus), CMV (cytomegalovirus), HHV-7, and three strains of Coxsackie B.

My immune system was severely compromised: My natural killer cell function was less than 3%, I had the defective 37kDa Rnase-L, and I had an abnormal cytokine pattern.  But no one knows how all this happened.  All we know is that this disease can occur in cluster outbreaks, and it can pop up in individuals.  No one in my family got it from me, but I believe the outbreak of EBV in 1990 marked the beginning of my illness – the beginning of the cycle of immune defect-virus-damage that characterizes this disease for many of us.  I had to continue to teach through my infection with EBV, including an hour’s commute and back, and while I recovered from mono at the end of the fall semester, my health began to deteriorate in seemingly disparate ways, until the ultimate collapse in 1994.

Years later I would have a spinal tap that revealed both HHV-6 and Cytomegalovirus were active in my spinal fluid.  No wonder I had the symptoms of encephalitis, and with the stiff neck, meningitis.  Along with the muscle pain, that meant literally that I had Myalgic Encephalomyelitis, or M.E., a disease that had been diagnosed in the UK since the mid-1950s.  In the United States, however, all I was given was a diagnosis of “chronic fatigue syndrome,” a name chosen by committee and adopted by CDC in 1988 to replace the name given a number of cluster outbreaks occurring in the USA at the time, Chronic EBV.  They did not mention M.E. – though there were specialists at the meeting who insisted that was the correct diagnosis for these outbreaks.  They did not ask anyone in the disease community what they thought of this name.  They simply adopted it, and having done so, consigned the disease to the backwaters of medicine where neither research nor treatment could be found.

There could not have been a worse choice of a name for this disease if CDC had hired a focus group,  Chronic (as in chronic whiner) Fatigue (as in “yeah, I’ve been feeling tired lately myself”) Syndrome (as in syndrome of the month) – applied to upper middle class white women “trying to have it all” (as the late Bill Reeves of CDC once phrased it) – how inconsequential, silly even.  Twenty-five years later, 85% of patients – over one million Americans – have no idea what is wrong with them, because, according to both CDC and private demographic evidence, only 15% have a diagnosis.  25 years later only 15% have a diagnosis.  That is a mighty admission of failure.

The infectious disease specialists in northern Delaware dismissed my illness as minor.  “You’ll be back to normal in two years,” they assured me. Oh good, I responded – I won’t have to miss more than two seasons before I can go back to skiing.  “Oh no,” was the response.  “You’ll never ski again.”  How was that “normal?” I asked.  They got angry at that.  That’s when I was referred to Dr. Wallace and, thankfully, only had to deal with these people once more, when I was on the antiviral Vistide for my cytomegalovirus infection.  Dan Peterson, my new specialist, had asked them to let me get the infusions at their center, and they had agreed.  But when I showed up at their office, one of the doctors took me aside and said that they could not let me have Vistide because my medical records showed I “only had CFS – nothing serious, like AIDS or cancer.”  They said they could not justify using the drug on someone with a diagnosis of CFS – even though it was an FDA-approved drug for the virus CMV, which was active in both my blood serum and my spinal fluid.

Let me repeat that:  once given the label Chronic Fatigue Syndrome, I would meet disrespect from many doctors and people at NIH and CDC. None of my extensive testing mattered.

Although the progressive version of M.E. that I suffered from was unusually severe, I turned out to be lucky.  I was given the opportunity to go on the experimental Phase III drug Ampligen, in what is called a cost-recovery (I pay cash), compassionate care (I am allowed to do this because I was so very sick), open label (I know I am on the drug so FDA ignores me) study.  I have to get Ampligen at the study site by IV infusion twice a week.  And FDA can take the drug away from me whenever they want.

I have been on Ampligen for eleven of the past fifteen years.  Again, I am unusual in that my illness erupts again within a year of going off the drug (which I did once voluntarily, and once because FDA did take the drug away).  FDA has admitted, in writing, that the drug is not toxic.  But they are not “convinced” it is effective.  My experiences do not count because I was not in a placebo trial; I knew I was on the drug.  There is no other drug in the FDA pipeline for either CFS or M.E. (Although there are immune boosters and antivirals available for patients, and an anti-cancer drug called Rituximab is showing some promise).  This is the only one expressly targeted to M.E. or CFS.  Over one million Americans suffer from my disease.  FDA, CDC, NIH – none of them cares – though in fairness, there are individuals within those agencies who do.  It is those who make decisions who do not care.

[Side note about the obsession with placebo trials – If just knowing you are on a drug can make your immune markers return to normal, your active viruses return to a dormant stage, and change tests such as SPECT scans and CPET scores, we should all be cured of anything by happy thoughts.  Does FDA really believe this?]

So here I am today.  I would not have written this were I not on Ampligen.  On Ampligen, I can drive, take care of myself (mostly), read a book, work on my own writing, spend time with my children and grandchildren.  Off Ampligen I am an invalid in bed in severe pain, curled up in the dark because light is too painful, listening to a favorite movie over and over again.

So twice a week I leave my house at 8:15 and commute by train 100 miles north to Dr. Derek Enlander’s office in New York City, the closest site where I can get Ampligen.  I usually get home around 7 pm.  It is grueling, but at least I am getting the drug that keeps me from being a bedridden invalid.

Myalgic Encephalomyelitis is a serious disease.

CDC betrayed us by giving it a silly-sounding name in 1988 – CFS.  NIH allocates less than $5 per patient per year to study this disease – a pathetic amount.  We came back with private research initiatives, funded by cash-strapped patients and their families, and more good biomedical research is being published than ever before.  The whole concept of what “CFS” is, silly sounding name and all, is undergoing a transformation. And for the first time in my memory, clinicians and researchers have agreed on a definition – the Canadian Consensus Criteria, updated with current research.

So how is our government responding?  Suddenly there are three different initiatives within the U.S. department of Health and Human Services (HHS) to redefine the disease and rename it – done behind closed doors.  At CDC there is the Multi-site clinical assessment – which brought in respected clinics, but is now being polluted with research from a poorly conceived and run study by CDC in Georgia that used a different definition entirely.  HHS has once again turned to the IOM – Institute of Open Medicine – with a committee of whom the majority are not experts in either CFS or M.E.  IOM already weighed in with the opinion that both CFS and Gulf War Syndrome be renamed “Multi-Symptom Disorder,” provoking anger within the larger veteran community.  And NIH as a whole has given the “problem” of the name and definition to their  “pathways to prevention” program, or P2P.  In this case a committee was explicitly created consisting of individuals with NO experience -either medical of personal – with the disease, “like the jury system,” a spokesman explained cheerfully.  “Stakeholders” with different viewpoints testify to the committee, and then this committee of amateurs will recess and vote on the choice of what to do next.  Precisely when did the jury system replace scientific method in determining medical policy?

They are going against the expressed wishes of 60 specialists who signed a letter asking that the U.S. adopt the Canadian Consensus Criteria (CCC), and the public members of the CFS Advisory Committee to HHS asking that the government adopt the CCC, and hold an open workshop of specialists to update it (it is ten years old) with current research results.  Why are those of us within the world of M.E. ignored?  Why is 60 years of biomedical research into M.E. ignored internationally?

Perhaps more important, why don’t people outside our community – people in the media, in government, our doctors, our neighbors, our employers – why don’t they know that there is a growing epidemic of a severe, life-altering and in some cases life-taking disease that CDC and NIH are keeping under wraps?  I have friends who were teenagers when they got sick, and are now in their 40s. They did not get to marry their soulmate like I did.  They did not go to college or have a career.  They did not have children or grandchildren (I have two grandchildren now).  I was lucky compared to them.

They can barely afford to live from day to day.  They cannot afford the testing I have had, and they most certainly cannot afford the treatment I am on.

I have lost friends to this disease; we have lost young people to this disease.  The viruses can get into your heart muscle; they can get into your liver.  Patients die of rare cancers as well.  And then there are the suicides.

There has been a new series of outbreaks in the past five years.  Look at those you love, and if you care for them – whether or not you care about us – do something.  Because they could be the next victims.

Thank you for reading.