The future might be the past…

I’m going through a rough(er) patch. My body is scaring me because I can’t find any cause for recent episodes. One of the good things these past few years, is that I can usually pinpoint a reason for reactions and downturns. Even after the last horrific night I suffered with apparently no reason (it was last November, during my Dad’s very short visit and I couldn’t blame it on overdoing it because I didn’t), I started spotting late the next day and–light bulb!–it was my period coming a week early (I can have terrible reactions on the day before or the first day of menstruation).

When my husband called 911 on the first day of my last period (both my MD and ND said that my body had gone into shock), it was the first time I’d had such a bad collapse with vitals bottoming out since 2010 — since before I was sick! Then, 5 days later, I got a tingly tongue and lip during IVIG and then a hive on the base of my throat. I realise it was a tiny reaction compared to what so many mast cell patients go through (a week later, a friend of mine went into full-blown anaphylaxis during her IVIG infusion and then somehow got the guts to try again the next day with the same batch –that put my experience into perspective), but the thing is, except for one small hive when I tried Xanax in 2013, I hadn’t had any hives since being in full-blown anaphylaxis 17 years ago! And that place–a hive in the suprasternal notch– was always the position for a systemic red alert, for something I ingested, as opposed to benign contact dermatitis.

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Then Saturday evening, my tongue swelled up for the first time in 7 months for no reason that I can figure out. I had tongue swelling a few times last year, but I could always explain it (dental work, sauna, vancomycin). Even more concerning, it’s still swollen now, 45 hours later and that’s very unusual. I took Benadryl the last 2 nights, squirting it onto the affected area of my tongue, as I’ve been told to do (this is also unusual for me–I am extremely judicious with Benadryl, only taking it when absolutely necessary) and the swelling still hasn’t resolved. I can’t remember another time it lasted this long — maybe, again, 17 years ago during anaphylaxis.

Then yesterday afternoon, I was hit with vertigo after spending too much time on my feet, preparing food. Vertigo is rare for me and is a big red flag. It’s very different from dizziness and I don’t think it has anything to do with blood pressure. I went to bed for a while, hoping it would resolve, but, when I got up, I was still slamming into walls, as if I were walking the hallway on a lurching boat. The last 2 times I experienced vertigo were 5 months ago during–shocker–my period and a year ago on the morning we were leaving for California, after killing myself the day before to finish packing. I thought it might be something to do with my neck, which always has issues, so I used heat, then my cervical traction device, then an ice pack. I think it helped; the vertigo had mostly abated by the time I went to bed.

But…

A few hours after I went to sleep, I woke up with horrible shakes and chills and drenching sweats. My BP was low (but low-normal for me: 80/50), HR was a little high, temperature was 96 degrees, and O2 was 95%. It was 7 terrible hours that felt viral, like when I first got sick, but was probably mast cells, what with the swollen tongue and all. I finally got up to do that thing that other chronically ill people might understand: put on clothes in case I had to go to the hospital. On a normal day, I might sit around in my dressing gown with unbrushed hair all day, but when there could be a chance I’m going to the hospital, I try to make sure I’m not naked. I also make sure I’m not wearing anything I care about — I’ve lost clothes in the hospital before.

Strangely, I had almost an identical episode on this exact day last year. Here’s a screenshot from my calendar:

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After the most stable autumn and winter I’ve had since being sick, this downturn–this piling on of relatively rare, red-flag symptoms–scares me. My sleep has gone to hell in the last few weeks, which compounds everything by stealing energy and increasing pain. Plus, I’m exacerbating things by holding tight to my “best winter yet” narrative and by fighting so hard to maintain the level of functioning I’ve had this past year, rather than pulling way back and resting aggressively.

My ND says the naturopathic philosophy is that you will go back through previous stages of health and experience earlier symptoms as you travel the healing journey back to where you once were. I’ve latched onto this theory to anchor myself and dispel some fear. The resurgence of all these old symptoms means there has been a shift in my system — but maybe it’s a positive shift, even though it doesn’t feel that way. I’ve gained weight since starting IVIG, over 8% of my norm, which is not insignificant, especially on someone as small as I am. I’m at my heaviest since being sick and, although I’m not overweight, I’ve lost muscle tone the last 7 years and I don’t have the physical ability to burn fat and build muscle, so I hope this trajectory doesn’t continue. My doctor thought this, also, pointed towards a shift in my body: maybe I’ve started absorbing nutrients better. Acne is coming back a little, too. Maybe my hair will grow back! Or the next thing will be that I’ll catch a cold for the first time in 8 years… (And because I really don’t want this to happen, no matter what it might indicate about a calming immune system: knock on wood, toba, toba, spit over shoulder: patuey.)

But, as I lie here, shaky, with my swollen tongue, chronicling these last few weeks (minus the osteoporosis diagnosis and extremely elevated post-antibiotics SIBO test results, both of which I’ll have to write about at a different time), none of it feels like a positive shift and I worry about what I should eat so as not to add to mast cell reactivity and whether I should stay in bed and lie still, even though longed-for Seattle sun is streaming through the windows and I’d love to make some breakfast and sit at my table watching Riley lounge in the grass, soaking up the rays, and the hummingbirds diving around our feeders.

First 911 call since being sick.

We had to call an ambulance this morning for — are you ready for this unbelievable fact? — THE FIRST TIME SINCE I’VE BEEN SICK (absolutely sick and disabled by M.E.; I was fully functional with MCAS for a decade beforehand). And I need the help of all you big brains to figure out the mechanism behind what happened. This is a long post because I want to track exactly what happened. I appreciate your reading this and your thoughts.

My main question is: What can cause sudden bradycardia and loss of consciousness, but not significant hypotension (nor hypertension)? Here’s the back story:

I have a history of anaphylaxis and it almost always happened during my period, usually on the first day, usually after drinking alcohol. I also have a history of collapsing at the start of menstruation, this happened many more times than the full-blown anaphylaxis and often seemed to be triggered by a bowel movement in the morning. The collapsing we’ve called vasovagal syncope, the theory being: vagus nerve triggered by bowel pressure + very reactive day = collapse. I sometimes lost consciousness, but I always was immobile, grey pallor, yellow lips, glazed-over, unfocused eyes, covered in sweat, heavy breathing, hypotensive, bradycardic. What was NOT typical of vasovagal syncope, according to doctors, was that my body didn’t bounce back: my HR did not rise to compensate for the low BP and my BP didn’t come up once I was supine. It usually resulted in ambulance trips to the ER for fluids and at least once I got IV morphine for severe dysmenorhhea (I can’t have any morphine-derived meds anymore).

These were my main health issues before M.E., I felt normal otherwise and pretty much blew them off. Incredibly, they haven’t happened since becoming sick in 2011. My dysmenorhhea actually got much better. Since being sick, I’ve often had bad mast cell reactions and worsening of ME symptoms on the first day of my period, but no collapsing with my husband terrified, calling 911. I thought it was because I’m more conscientious about hydrating and salt-loading.

I was spotting yesterday. My period came on in earnest in the middle of the night, but what disturbed my sleep repeatedly was a viral feeling of sick chills every time I changed positions. Chills and shakes enough to wake me. Then the period cramps started, much, much worse than normal, incredibly painful on the left side. The only thing I could think was maybe it was a ruptured ovarian cyst. I was moaning and crying out with the cyclical cramps, trying to find a position that eased it, my dog Riley clawing at me and burrowing under my body to help. My husband got me a hot water bottle, 2 acetaminophen and a benadryl. Then I took a turn for the worse: I was shaking badly, became nauseous, very weak, drenched in sweat (all the symptoms listed above). We took my vitals: BP was 86/49 (low, but normal for me), temperature was 97 (low, but normal for me), oxygen 96, but my HR was 48 — very abnormal for me. I’m usually 68ish at rest.

My husband got me apple juice in case I was hypoglycemic (it was too much of an emergency situation to check my blood sugar), salt water for my blood pressure, and started to call 911, but I said no. What could they do? Besides charge us thousands of dollars that we don’t have. I’d taken the 2 medications I could take, I could give myself fluids at home with my safe saline, and I didn’t want the two of us sitting around in a building full of flu and measles for hours on end, waiting for blood work and a vaginal ultrasound that would show nothing. But I kept getting worse and knew I was about to lose consciousness (even though I was still in bed and hadn’t even tried to stand up). I was starting to be unresponsive, so my husband called the paramedics.

By the time they got there (3 emergency response vehicles, 6 EMTs!), I’d come back from the edge a bit and was able to talk. They were concerned with my low BP, but I assured them it was normal for me. They did a cursory check of my heart and were concerned about the bradycardia, but said they didn’t see any rhythm issues. They tried to persuade me to go to the hospital, but I said no and signed a waiver. They didn’t want to speculate beyond dehydration (they pointed out that people aren’t realising how dehydrated they are in the current very dry Seattle Snowpocalypse) and possibly needing tests of my reproductive organs. She said, “It’s alarming to lose consciousness while lying down, it’s alarming how low your blood pressure is and it’s alarming that your heart rate isn’t responding to your low blood pressure.” <– That’s what I want to brainstorm.

It was definitely caused by the first day of my period, as usual, but what is the physiological mechanism? What might typically cause sudden bradycardia? What can cause a low HR + low BP (if you take the paramedic’s position)? Or what can cause a low HR + normal BP (if you consider my BP is normally low)? How does a reaction to my period explain this? Could it be 100% pain-induced? If it’s a mast cell reaction, I would expect a high HR and an abnormal BP. Why would I pass out when I’d been lying down the last 9 hours? Why would I pass out with my BP around my normal? Can a low HR cause loss of consciousness without BP dropping significantly? Is this cardiac syncope? Could I have cardiac syncope without knowing I have heart issues? Or autoimmune autonomic dysfunction? Or, once again, adrenal insufficiency? Does losing consciousness usually make breathing labored?

By the time the paramedics left, I was very shaky, but I knew I wouldn’t pass out and my husband helped me get up and hook up my own fluids. I went to bed freezing, with 2 hot water bottles, all my clothes on, under covers in a warm room and it took hours to stop being chilled to the bone (why was I freezing?). When I woke up, finally warm, my HR was 76 — almost 30 bpm higher! I’m still shaky, have a very bad headache, and my heart is jumpy with some palpitations, but completely different from the half-dead, exsanguinated feeling of the bradycardia.

Any ideas are appreciated. I have a routine follow-up appointment with my GP on Tuesday and I’d like to ask her for any tests that might be important. Cardiac work up?

Lastly, I want to mention that it’s REALLY hard not to believe in retaliatory chronic illness gods — yesterday I started writing my first blog update in almost 5 months, it is incredibly positive (“my baseline is higher! I’m able to do more!” etc.) and I stopped myself from writing my usual “gods, cover your ears” and “knock on wood, toba toba” because I’m stable, I’m not as fearful of being knocked down, it’s superstitious nonsense… and then this happens… the first time in 8 years… It just seems a little coincidental. And makes me sad.

Grab that cash with both hands and make a stash.

This is a hard one to talk about. It’ll be more of a rant. And I’d like to preface it with all of the obvious about how grateful I am that we were in the economic position we were in when this illness started, how grateful I am that I had a few years of good earnings and decent savings, how grateful I am that my family is healthy and has never been bankrupted by health woes. I am, I truly am, and I think about–probably too much–what must happen to others with a severe chronic illness (that has no knowledgeable doctors and no decent treatment) who are in worse financial shape than we are, without our resources, who are in countries steeped in poverty, refugees fleeing wars… on and on… I do know how lucky I am. But, I’m scared. Mostly because I don’t know what treatment to spend money on and what to reject.

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Recently, after 6 months of immunoglobulin infusions, I got a slew of bills that I didn’t anticipate. It turns out that for my itsy bitsy dose of 5 grams each week, I pay $164 after insurance. Out-of-pocket. That’s $655 per month. If I had known this before starting, would I have done it? I don’t know. But now that this is the only treatment that has helped me, how can I stop? And I’m in this tricky spot. I have private health insurance because I was too scared Medicare wouldn’t cover these treatments (also because Medicare won’t cover acupuncture, nutritionists or physical/myofascial/craniosacral/massage therapy — some of the only things that have made a difference in my pain levels). After being told IVIG was not an option by so many doctors, knowing that I didn’t have a history of bacterial infections and a vaccine challenge is usually required for approval, and having Coram (the infusion service) tell me that Medicare hardly ever covers treatment, I was just too scared to give up the private health insurance that had already approved my treatment for the whole year. Of course, I have since heard from others that Medicare covers their IVIG or SCIG at 100%, but … how could I risk changing coverage now when my IgG levels have come up and that alone might disqualify me from continued treatment? I’ll have to revisit this next January when I’m eligible for Medicare enrollment again, but, if I’m still improving with my infusions, I don’t know how I’d take that leap of faith.

An aside for those in other countries or for those that don’t know this fucked up aspect of our healthcare system here in the U.S.: Medicare (government health coverage) isn’t free. You pay each month just as you do with private health insurance. It’s usually cheaper, but not always. It can range from $105-$771 a month, depending on your situation (the higher end is reserved for people who have not worked enough in their lifetimes to qualify. So, if you are struck down with a chronic illness as a young adult and you haven’t worked the requisite 30 quarters in a tax-paying job, you’re not married and you undoubtedly have little savings, then you get to pay the highest premium for our national health coverage– oh, but only if you’re lucky enough to be granted full disability, which very few ME/CFS/Lyme sufferers are). And don’t think that Medicare actually covers your healthcare in full, though. You will still have a deductible each year and co-insurance (the patient pays 20%, typically), you’re prescription medications aren’t paid for unless you get extra coverage and hospital stays can still leave you in horrendous debt. You can stay in a hospital for a few months for the low, low price of $1,260 (although skilled nursing facilities will be more because that price doesn’t cover people to care for you), but let’s take a pretty terrible example: 150 days in the hospital. In 2015, that would have cost you $47,565 out-of-pocket. If you had to stay any longer, all additional costs are your problem. The government washes its hands of you. But wait, there’s more! If you choose not to enroll in Medicare when you become eligible, your monthly payment when you do enroll will be higher–forever–usually 10% higher for each year you could have signed up but didn’t. In my case, if I’m covered by Medicare next year, I will be paying an extra $300/year because I didn’t enroll when I first became eligible. If I wait until 2018, I’ll pay a penalty of at least $440 that year, plus more each year as the premiums continue to rise over my lifetime. Lovely.

SO… Last month I finished up weeks of financial slog for our 2015 taxes and was happy to see our (and by our, I mean my because my husband’s medical expenses are only about a quarter of our total and that is solely health insurance premiums because he never needs a doctor, knock on wood, toba toba) out-of-pocket medical costs had come down slightly.

2012: $14,480
2013: $19,032
2014: $19,564
2015: $17,912

That doesn’t allay the fear, however. After utilities (sewer, water, garbage, recycling, gas, electricity) and mortgage payments, we’re left with about $20K a year to live on and medical expenses have been almost $20K a year since I got sick. That means most everything else–food, clothes, toiletries, dogs, phone, internet, gas for cars– comes out of our savings. I’m trying to be healthier, place fewer burdens on my system and subdue my chemical sensitivities by eating organic food, pastured meat and buying less toxic products. All of these things are more expensive. For the last year and a half, I’ve been paying $200/month for compounded medications instead of the cheap, generic, filler-filled ones. It hardly costs anything to get sick, but the system is rigged to bankrupt those that are.

I feel very fortunate that we had saved money before this happened, but it will run out eventually and I don’t want to make all the wrong decisions now because I’m frozen in fear of the future. Our day-to-day living is all-encompassing, so time slips by in survival mode and the big decisions never get discussed. I’m happy that we didn’t sell the house when I first got sick because we’re finally not under water and it might actually be worth what we owe again. But when do we sell? And do I switch back to generic meds? Do I stop supplements (around $100/month)? Do I stop seeing my doctor who doesn’t take health insurance? Do I not try human growth hormone or hyperbaric oxygen or nutritional IVs? Do I stop my immunoglobulin infusions?? Last year, I thought a time would come when we just moved somewhere very small and affordable, maybe a foreign country, and I stopped all medical visits and we tried to exist on pittance and make our money last as long as possible… But now that I’ve found a treatment that helps my functioning, I have renewed hope. Maybe I’ll be able to earn a living again if I keep making progress. How can I give up on that? Or should I accept the fact that this is as good as it’s going to get, income-wise? My husband will get older, he’ll be able to work his manual-labour job less and less and I won’t ever recover to the point of being able to hold a job… I think that’s the reality. I know a lot of people with this illness and many have made improvements, but I’m not sure if I know any that have gone back to full-time work.

So, we beat on, boats against the current, cut costs where we can, shop the deals online, grow some veggies, sell some stuff, and pray that in ten years time, the tides have changed for the better.

Title Credit

Finally Starting IgG Infusions.

After 13 months of buildup, I’m finally scheduled for my first IgG infusion. Dr. Chia recommended I get IVIG (intravenous immunoglobulin) in August, 2014. When I came back to Seattle, I asked my GP about it and she said my total IgG wasn’t low enough (allopathic guidelines say total IgG < 400mg/dL) to warrant therapy. I asked my rheumatologist about it and he said because I have no evidence of persistent infections, I’d have to get an antibody vaccine provocation. I’m sure there’s a name for this, but, essentially, you are given a vaccine and then they look for an appropriate rise in antibody titers to that vaccine. If your body doesn’t mount a response, they can approve IVIG. Well, of course, I’m never getting a vaccination again, so that’s out of the question. I asked my main ND, Dr. W, and she said she didn’t have the ability to order it, but suggested oral IgG, which I never started because… another supplement, ugh. So, I’d given up on it when I went to a new ND, Dr. I, and I didn’t even think to mention it. After reviewing all my labs, the first thing she recommended was IVIG and, just like that, she got it approved. But… not so fast. That was 10 months ago and there was a lot of work to be done.

(As an aside, I do wonder if I’ve had low immunoglobulins my whole life and nobody looked into it. Or maybe it waxed and waned. I had chronic bronchitis, pneumonia and asthma as a child and, as an adult, got a chest infection pretty much once a year–probably more when I was smoking–but never thought this was unusual. Here’s a short article about one girl’s SCIG from infancy. It has some photos of infusions.)

Before trying IVIG, we decided I should try SCIG (sub-cutaneous IgG) because there are fewer side effects for most people. Before SCIG, I needed to test out the medications necessary to stave off anaphylaxis, aseptic meningitis, migraines and a host of other issues that can develop. Before testing the pre-meds, I had to make sure I could handle IV saline infusions since the last one I had caused a leaky anaphylactoid reaction. Before trying IV fluids, she wanted me to be on bioidentical progesterone, pregnenolone and DHEA, not only because my hormones are low, but also because there is evidence that hormone therapy can calm reactivity. And all of this has to be danced around my menstrual cycle because I’m somewhat reactive during ovulation and extremely reactive during my period. We also had to wait for me to get my nerve up because so much of this is dependent on my comfort level and, when anaphylaxis could be involved, I’m never comfortable.

I have friends in mast cell groups who “anaphylax” often, repeatedly, sometimes daily. I can’t imagine this. There are different levels of anaphylaxis, so I suppose these could be lower level reactions, but my episodes of anaphylaxis were full-blown and very scary, mostly because of the difficulty breathing. I really thought I would die and I probably have some PTSD from those experiences. No amount of sickness scares me as much as having a sudden anaphylactic reaction that kills me. I don’t want to get meningitis or be saddled with chronic migraines like my friend Jackie, but those are not at the top of my list of fears.

Having said that, I pay attention to comments like this since I, too, once had a CSF leak from a lumbar puncture and it was the 10 on my pain scale to which I now compare everything else. IVIG can mess you up:

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(FYI, I found this website with tons of allergy information and graphics that might be interesting.)

So, I’ve been on topical, compounded hormones for almost a year and they haven’t raised my serum levels much, but I think they’ve helped with sleep (they also cause greasy skin and hair, like I’m going through puberty, but I’m willing to put up with that). At the beginning of this year, I was reeling from the terrible nocturnal reactions and tongue swelling I had been having, so I wasn’t willing to try anything new. Finally, in May, I got around to testing a tiny bag of IV saline (it went fine, although the whole appointment and clinic visit was a total shitshow which lead me to write two long emails to my doctor. I came very close to not going back, but I really want this treatment). Then in July, I had a full liter infused over 6 hours (a very long time for 2 bags of saline). Everything went fine, no problems (but no boost in blood pressure or energy, either), which meant it was time to schedule SCIG, but, once I started researching in earnest, I realised that there were so many questions I needed answered.

IVIG is often done in a hospital setting if the person is high-risk. I would prefer to have more than just a nurse present if I went into shock (and, by all accounts, nurses’ competency levels are highly variable). My doctor didn’t know how to get this done because the company with which she works does home infusions; she recommended I ask one of my MDs for help. More time ticked by while I emailed my GP (who has only met me once), my endocrinologist and my rheumatologist (both of whom have only met me a few times) for help with this. They all said no. I talked to the infusion company (who have been incredibly helpful thus far) and they offered to do it in their “infusion suite”, but there are no doctors present and their protocol is to call 911 if there is an emergency. Well, I live a few minutes from a fire house and an emergency room, so home seems just as safe as the infusion suite, if not more so since my husband, who is far-too-intimately acquainted with my history, can be there.

Scrolling through Facebook groups, I realise I have to learn how many injection sites I’ll have and whether to use my belly or thighs and the needle size and how many ml you can put in any one area and leakage, hardness, weals etc. etc. My good friend, who is braving his way through gruelling IVIG treatment, has been giving me advice every step of the way, which is invaluable when your doctor doesn’t tell you exactly what the process is or the importance of hydrating or the effects of IgA.

Different brands of IgG have varying amounts of IgA in them. In general, lower IgA equals fewer reactions and, if blood tests show that you have very low IgA or anti-IgA antibodies, you will qualify for the IgA-depleted IgG brands. Isn’t this something my doctor should have mentioned? She wrote the prescription for Gamunex and I asked her if she would consider Gammagard or Hyqvia, both of which have lower IgA. but she said it wasn’t necessary. And she may be right, but wouldn’t you want to use every tool available to keep your highly-reactive patient as safe as possible? My IgA has been slightly low in the past, so, right before I was meant to schedule my first infusion, I asked my doctor, “Can you test me to see if I have anti-IgA antibodies?” and she said yes. Doesn’t this seem like something that should have been done originally without my asking, considering my history?? Maddening.

The IgA test was meant to take a week to come back and I didn’t get the results for 3 weeks, so here we are in September. One of the IgA subclasses was low out of range, but I didn’t have anti-IgA antibodies, so I couldn’t really make a case for changing from Gamunex. And I wanted to do it as soon as possible rather than wait until after my next period, which would put us in October, so I scheduled it for this coming Tuesday.

My doctor wants me to take 2 Tylenol (Paracetamol), 2 Benadryl and 3mg of Prednisone (Prednisolone) before my treatment. I needed to test these premeds because last year when I took Prednisone, I worked up very slowly to 3mg, I only ever take 1 Tylenol at a time and I have been VERY sensitive to Benadryl since having M.E.–plus I’ve never taken the combo. I realised my EpiPens were expired and so were my two boxes of Benadryl and my emergency Prednisone. It took more waiting time for new prescriptions to be called in and finding a good day for my husband to pick them up. When he did, I realised they had given me 10mg pills of Prednisone rather than 1mg (always carefully inspect your pills!) and he had to go back to the pharmacy for a fourth time in a week. Poor guy.

Last week I tried 1 Tylenol, 1 Benadryl and 1.5mg of Prednisone (using my expired stash). About half an hour later, I got a tight chest. Not enough to scare me, but enough to put me off trying more Benadryl. Then I got very shaky and drowsy and had low blood pressure. After I slept for about an hour, I was incredibly thirsty and hungry and then, about 4 hours after taking them, I felt better than I have in a while and was chatty and good-humoured. Success.

Last night I tried again, this time with 2 Tylenol, 1 Benadryl and 3mg of (fresh) Prednisone. I couldn’t bring myself to take 2 Benadryl. The good news is, I didn’t get the tight chest and shakes this time, I just fell asleep for an hour. The bad news is, I didn’t feel good afterwards at all. I had a headache, my eyes and lips felt swollen, I was completely parched and felt really out of it and hungover. But, this is HUGE for me. It is so incredibly exciting to take a bunch of medications and come out unscathed. I’ve been wanting to test this for ages so I have some confidence that, if I’m given IV Benadryl and/or steroids in the event of an emergency, I’ll be okay.

A few final hurdles: I’m scrambling to get two blood draws on Monday before starting SCIG. Dr. W has been trying to get me to do regular “hydrotherapy” for a year and a half. It’s basically hot and cold towels over my torso and back, coupled with electrical stimulation (instructions for doing it at home can be found here). I never wanted to expend the energy until she told me about a patient of hers with hypogammaglobulinemia whose IgG levels came into the normal range after 6 weeks of hydro constitutionals. She was willing to test my total IgG before and after if I did this experiment. I love quantifiable evidence! So I started in August and, even though it’s only been 5 weeks, I want to get my levels tested again before starting SCIG.

The second thing is a babesia test. I’ve been asking my ND about this since June–in person during appointments, in email to her and also to her assistant, who keeps saying she has to get the doctor to sign the form–and can’t seem to get anywhere. They say yes, but it never happens. How hard could it be to sign a requisition form?? Her last message to me said I could get my blood drawn if I make another follow-up appointment. Are you kidding me? That seems downright cruel when we’ve discussed this at my last 3 appointments and she only works two days a week. I talked to the director of Igenex, the lab that does the testing, and he said I should definitely get it done before SCIG, so I finally just ordered the test kit myself and I’m going to bring it to my other doctor, Dr. W, on Monday and beg her to do the blood draw along with the total IgG. I don’t understand why everything has to be such a battle. It’s exhausting and infuriating.

I’m trying to not be annoyed at the difficult communication with my SCIG doctor because, not only is she the only one getting me this treatment, but she was willing to start me at 1 gram the first week (unheard of), building up to 5 grams over 5 weeks. She was also willing to prescribe saline infusions along with the treatment. Only 500ml each time, but every little bit of hydration helps mitigate side effects. I’m deeply grateful to have someone willing to do that when an immunologist wouldn’t even have a conversation about it.

Wish me luck. I’m going to receive all the supplies by courier on Monday and then Tuesday afternoon a nurse will come over, start the drip and show me how to do the sub-cutaneous injections. I believe after that, I’m on my own. Or, maybe because I’m getting IV fluids each week, a nurse will have to come, I don’t know. I will take Zyrtec and hydrate like mad the days before and after… But, friends and family, I am very scared. Even though it’s SCIG and not IVIG and even though I’m starting at a laughably low dose, I’m still scared. I will eat fairly low-histamine in the next few days and do my breathing exercises and meditations before, during and after treatment, but still… I want this to be the beginning not the end. Are my affairs in order? Do you all know how much I love you? Remember: when I first got sick and thought I was dying, I wrote down directives and requests. Husband, remember: the notebook in my bedside table.

Now everyone knock on wood for me and spit over your shoulders. Toba toba.

Surgery and ME/CFS

After two weeks of wonderful, solid sleep with few awakenings, I was beginning to see the light. Over the long weekend I started to feel more normal than I have felt in months ~ maybe a year. I could do so much more during the day and I was still feeling alright before bed. I didn’t have any periods of utter exhaustion or flu-type feelings and my brain was firing on more than one cylinder (not all cylinders, but obviously more than usual). My physical therapist and I always talk about movies, tv shows, music and books and I can never come up with names or titles: “Oh, you should read… I can’t think of the name… it’s written by what’shisname… you know, the American guy that was living in England…” I get so frustrated. There have been many times I wish I could text him after I get home and can look up the ten things I was reaching for. Yesterday, my brain was a smooth operation. It truly felt like somebody had lubricated the synapses. There was a sense of physical spaciousness. It was a well-oiled, humming machine, almost like my healthy days. “Edward Norton was great in Primal Fear. I loved him in American History X… Yes, I adore Kevin Spacey. He was so good in American Beauty. And Seven! Oh, and the David Mamet play… Glengarry Glen Ross ~ so good! And Swimming with Sharks. I’d love to be able to see him in Iceman Cometh on stage…” All those names! They just came to me! No searching, no hard grinding mental gears, no giving up in frustration. It just illustrated the limits with which I’ve been living.

Anyway, last night I didn’t sleep and I feel dreadful today and my head hurts and my brain hurts and I fear the worst for a downhill turn. I got 4 very broken, very uncomfortable hours of sleep because, in the middle of the night, I woke up with a terrible pain in my abdomen. It is a recurrent sharp stabbing in the upper right quadrant, which has me grimacing and sucking in air every few minutes, trying not to gasp or moan so my dog doesn’t panic (which he does when I’m in pain). Throughout the night, I did everything I could think of: walked, sat, breathing exercises, massaged, drank water… Nothing helped and it is still with me now, nine hours later and definitely has me worried. I assumed it is a issue in my bowel because that is where all my problems lie, but I spent the night lying in the dark quiet, worrying that is my appendix (also, I had a bowel movement and nothing changed). I’m not vomiting and I don’t think I have a fever, so I’m not jumping to see a doctor. But the pain hasn’t dulled at all and I am so, so tired. If it continues into tonight, I won’t get any sleep again.

As I lay there last night, I was tormented by the thought that it would suddenly get more serious and I would need surgery for something. I thought about all the info that I would want doctors and anesthesiologists to know in an emergency situation and decided I had to get up and write a doc that my husband could produce if I were incapacitated. Below is what I put together and I thought it might help someone out there. I wrote my own list and, afterwards, I read Dr. Cheney’s and Dr. Lapp’s advice online (to make my list more thorough) and it is incredible how closely I fit the ME/CFS mold. After two years it still amazes me when my health history PRE-ME fits all the symptoms and idiosyncrasies. For example, vasodilators are problematic to ME patients and I already knew this was a problem for me before becoming sick because of my history with idiopathic anaphylaxis and alcohol causing collapse. Also, the doctors mention sensitivity to epinephrine and I have always told my dentists not to use epinephrine in my shots ~ it has been a nusance for them because they have to give me injections over and over again as my body metabolizes the anesthesia so quickly without the epi. And I had low blood pressure and experienced vasovagal syncope decades before I came down with ME, so reading that Dr. Lapp says “Up to 97% of persons with CFS demonstrate vasovagal syncope” amazes me … still.

I would love to know if anyone has any more information for safe surgeries and/or hospital stays. I’m hoping preparing for emergencies can mitigate long-term crashes.

Here is Dr. Cheney’s advice for surgery and here is Dr. Lapp’s (they’re very similar). I also took Sue Jackson’s advice and made the first sentence: “The most important considerations are…”

The most important considerations are IV fluids, avoiding vasodilators and histamine-releasing agents, and my hyper-sensitivity to medications.

I have a history of hypoglycemia, idiopathic anaphylaxis, autoimmune urticaria and angioedema, Hashimoto’s, vasovagal syncope.

I am allergic to NSAIDS and CODEINE/HYDROCODONE and have other presumed allergies which may have caused tongue swelling (see attached list).

I have orthostatic intolerance (OI) and vasovagal syncope: low blood volume, low blood pressure, high heart rate when standing/moving. Please give me extra saline IVs. Care should be taken to give me adequate hydration prior to surgery and avoid drugs that stimulate neurogenic syncope or lower blood pressure. Syncope may be precipitated by cathecholamines (epinephrine), sympathomimetics (isoproterenol), and vasodilators (nitric oxide, nitroglycerin, a-blockers, and hypotensive agents).

I am extremely sensitive to drugs, usually taking ¼ doses or children’s doses. Please use all drugs sparingly until my reaction can be assessed and do not over-medicate me.

Vasodilators, such as nitrous oxide, should not be used because of my history with autoimmune angioedema, anaphylaxis and orthostatic intolerance.

Use anesthesia that does not release histamine: Histamine-releasing anesthetic agents (such as sodium pentothal) and muscle relaxants (Curare, Tracrium, and Mevacurium) are best avoided because of my history of idiopathic anaphylaxis and allergies.

Use a non-hepatic anesthesia: Potentially hepatotoxic anesthetic gases should not be used, such as Halothane.

BEFORE SURGERY: Serum electrolytes, magnesium and potassium levels should be checked preoperatively and these minerals replenished if borderline or low. Intracellular magnesium or potassium depletion could potentially lead to cardiac arrhythmias under anesthesia. A liver panel and a random serum cortisol should be checked prior to any general anesthesia. 24-hour urine cortisol is recommended before and after surgery.

I have a sensitivity to Epinephrine. For local anesthesia, perhaps use Lidocaine with no epinephrine.

I have a cervical spine injury. Please be careful and gentle when intubating!

It would be wise to keep me on oxygen the entire time I am in the hospital.

Prescription and over the counter medicines and supplements: Please see attached list.

Sunshine on my shoulders makes me happy

It’s like I flew to the Caribbean over night. I just sat in the sun for an hour, wearing only a tank top and shorts. I had to come inside in case I was in jeopardy of getting a sunburn. Sunburn?! A few days ago, it was snowing! And it is only meant to get hotter through the weekend. It definitely lifts my spirits. Although, you know how odd it is when you have a cold during the summer? That’s how I feel. I took my bad turn for the worse at the end of last summer, so it feels all wrong to be sick in the heat. Intense spring sun is meant to energize and bring a low hum of excitement and vibrancy. Instead, my head is full of cotton balls, my body is swollen, throat is scratchy and my muscles are extremely stiff. But, it’s warm out… focus on the positive!

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And, speaking of positive moments, I thought I should let you all know that I felt good yesterday. Yesiree, I said GOOD. I drove myself to an appointment that was only about ten minutes from my house. I stopped at a store and got lunch from the deli (this is the first time I have walked into any building but a clinic or hospital in months). I walked around the garden with my dogs. I stayed awake until 11pm and actually felt okay after 6pm ~ able to watch a movie, able to laugh.

There always has to be an unfortunately and, unfortunately, my night was quite tortured. I stopped wearing the cpap about a week ago as an experiment. My allergies flared up and I was too stuffy and inflamed in my sinuses to use the nasal masks (the alternative is a full-face mask, but mine is extremely bulky and wakes me up as I thrash around). My brain during sleep fascinates me. I would love to see an fMRI of the whole night. I would love to do a sleep study in my own bed and really see what happens from minute to minute. My brain is on fire. It is infected by unease. In the brief moments of waking ~ like surfacing periodically from quicksand ~ before the incubus’s long fingers push me down into unconsciousness again, I feel somehow crazed, like the mental version of wild-eyed. I am tensed against the cold or curled on the edge of the mattress, trying to avoid the heat. I am clawing my way out of nightmares that are always about running from whatever is trying to kill me or desperately needing a rescue, with no hope of help.

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If I had to objectively interpret what is going on beyond the obvious fear/loss of control dreaming, I would say perhaps I do need a prescription remedy to calm whatever chemicals are misfiring or maybe I am low on some neurotransmitters and, just like I take thyroid hormones everyday, I should be taking something to regulate brain chemicals… But that’s just it: they’re BRAIN chemicals. That’s scary. And it’s such a crap shoot. What Rx to choose?

So, I am at peace with my current stubborn obstinacy to sleep meds and maybe, if I ever take that step, I will wish that I had done it sooner, but I refuse to regret my choices.

As if to reinforce my thoughts, when I called the closest hearing aid store to inquire about custom-fitted earplugs, the lady that answered the phone told me she had taken half an Ambien and wound up in an ambulance to the ER, with doctors thinking she had had a stroke.

Anyway, I don’t know what the no-cpap experiment shows. I feel like I’m sleeping a little better and I think my Zeo graphs show slightly better sleep cycles, but I feel worse when I wake up and during the day. More tired and stiff and groggy and beaten up. Maybe it’s just allergies. My husband is watching tv with tissues shoved up his nose, so I know it’s definitely in the air.

Getting an MRI (brain and cervical spine).

If you read no further, take this to heart: MRIs are nothing to worry about, even if you are a panicky person. Feel free to jump to the MRI tips below (in blue) if you are interested in my feedback. Now, to the details of my visit:

I’ve had an MRI before ~ a few years ago for my neck before I was sick. It never occurred to me at the time to research what the scan was like or prepare in any way. They asked me if I was claustrophobic and I said no, but, when they put me in that tube, I opened my eyes, saw how close it was and freaked out. I didn’t freak out outwardly, I just started to get that hammering heart and flush of fear and thought, Oh, maybe I am claustrophobic. It was so close to my face that my breath ricocheted back at me and made it feel like I was in a coffin, buried alive. The test didn’t take long and I talked myself down the same way I do when I get on a plane: Are you going to get off the plane now that they’ve closed the doors? No? Well, then there is absolutely no point in being scared. It’s out of your hands. That’s exactly what I did: Are you going to NOT have the MRI? No? Then deal with the closeness of the tube.

This time around, however, I’ve been sick for a year and I’m a much more anxious person than I used to be, so I thought it would be a more horrible experience. It turns out the machines at the hospital versus the clinic I went to the first time are roomy. And I’d learned my lesson and brought an eye mask.

So, my husband drove me to the hospital and, for the first time in my life, I had to be pushed in a wheelchair to the radiology clinic, which was 100 miles from the parking garage. “Park your pride at home”, says Dr. Bested, so I did. Wheelchairs are good for me. Our MRI tech, Kevin, was amazing. All techs are not created equal. He answered my questions about the contrast (which I opted not to get because, as my husband said, if it can go wrong, it will go wrong with me), he offered me the old scanner with music or the new scanner without music, but with the tube much further from your face (I chose the latter after looking at it ~ it was bright and spacious). Kevin assured me that people make the techs stop the scan all the time, so not to be embarrassed if that happened. He put a blanket over my feet, a towel under my neck, offered to loosen my headphones (which I SHOULD have taken him up on ~ do whatever you can to be comfortable). He talked to me in between every scan and allowed me to move and adjust. The scan itself was no problem. The worst part was how hot it got under my back and, because I have fever episodes as part of my illness, it started to freak me out that I was having a reaction or a meltdown or a fever or whatever. Kevin said, “Pretend it is a heating pad on a massage table and you are getting a wonderful massage.” Perfect. But turn that heating pad down, for god’s sake!

Turns out the new fancy machine was having some problems, giving “error” messages (my husband said to Kevin, I told you: if it can go wrong, it will with her! I said to Kevin, That magnet just couldn’t handle my big brain ~ the activity threw it off its game :-)), so I had to be moved to the old machine after all. I had to wait another hour in between scans and Kevin gave me a juice and a blanket. Angel! The second round was rough. Kevin was gone and the new tech didn’t communicate clearly at all. I like to know when there is a pause between the scans and how long the next one is going to be and be warned when a particularly loud part is coming. None of those things happened with the new tech. It also turns out cervical spine scans are worse than brain scans. They put you in a different head cradle which isn’t wide enough for the thick, noise-cancelling headphones (or my head isn’t big enough to clear the top of it), so I was given flimsy airplane-ish headphones instead. These didn’t let me hear the music, didn’t block out the sirens and hammering and, to make matters worse, one of my ear plugs was falling out. The noise was BY FAR the worst aspect of this scan. It was like the day I tried to go to the cinema and had to leave because the sound system caused my brain to melt and I burst into tears. So I meditated on blocking my ear canals and taking myself out of the situation. I actually fell asleep, believe it or not. Just for a moment or two. Enough to jerk myself awake and probably mess up the picture quality a little.

4.5 hours later, I was able to leave and went home to bed. I’m happy it’s done because I am not doing well the last few days. I’m in a whole lot of pain. If I could get rid of my headache and neck/back pain, I would be a different person. My eyes are sunken from not sleeping and my mouth is pinched from grimacing. I look so much older. I look like an older, tortured version of myself.

Once again, family, I am so sorry to those of you that I am not emailing back because I’m writing the blog instead, but this keeps everyone up to date and I can only manage one computer task a day. The phone is a mountain I try to avoid climbing for the most part, so I apologise to those of you I haven’t called back, also. Tomorrow, I’m back to the hospital for my sleep study results. Joy.

So, here are my tips/warnings to make an MRI easy:

1. Wear clothes with no metal! Otherwise you have to take off everything and wear a hospital gown and freeze for the majority of the time.

2. If you are cold/heat sensitive, dress appropriately. It is cold in the hospital, but can get hot in the tube.

3. Don’t be hungry or thirsty going in to the appointment because my 2 hour visit turned into 4.5 hours.

4. Suck on a lozenge before you go in to the MRI so you don’t have any sort of tickle in your throat that will cause you to cough or move.

5. Make sure the ear plugs are in properly. One of mine was falling out when they started my cervical spine scan and I think I have hearing damage on that side, swear to god.

6. Make sure the headphones are on your ears properly for the same reason as the ear plugs. Nevermind the music, that’s not the concern~ they are very important for protection from the noise.

7. If you have a painful back/neck or fibromyalgia, make sure the blankets underneath you don’t have ridges and bumps. You have to lie still on those for a long time and they can start to feel like torture. Also, make sure your neck, back and head are in the best position possible to not cause pain and seizing up before the scan starts. Some techs don’t give you a chance to adjust in between pictures.

8. Put the eye mask on before they put the coil helmet thing over your face. Put the eye mask on and, after that, DO NOT move your head or open your eyes. This isn’t like peaking through your fingers at a scary movie where you’re not looking but you actually are ~ do not look, it’s as simple as that. You do not want to know how close the face mask is to your face, it will only cause anxiety and claustrophobia. Close your eyes: You are meditating in some nice place with your eye shade on, that’s all you know. If you open your eyes, it breaks the spell and, if you adjust your head or arch your neck, your nose will touch the thing over your face and you’ll realise how close it is and it will break the spell!

9. Meditate in your head, drown out the noise. I found that if I pretended that the noise was the machine curing my disease, I started to love the MRI. I pretended I was in the futuristic pod from Aliens/Hunger Games/Prometheus ~ one of those movies ~ and the robotic arms were fixing me, which made me be happy for the noise. Fix me, tube!

10. Don’t fall asleep if you’re a twitcher or a gasper-of-breath because it causes you to move and might affect the pictures.

11. If the tube under you gets very hot (and it does ~ it can make you freak out a little), pretend it is a warm pad on a massage table and you are relaxed and safe.

12. Know that if you panic and have to make them stop, it is okay ~ it happens ALL THE TIME.

13. If you are cold, ask for a blanket.

14. If you are in pain and can take a pain killer to make lying on a hard surface easier, do it. If you are able to take a Xanax or something, do it.

15. If you are noise-sensitive, don’t get an MRI if you have the choice.

16. Remind yourself that people have MRIs done constantly. No big deal.

I am grateful for my brain. I am actually hoping that they find something wrong in the brain MRI ~ I would be happy to have any other diagnosis but the one I have ~ but, if they don’t (and they won’t), I am grateful for my healthy, over-active, analytic, curious, obsessive, controlling, detail-oriented, micro-managing brain. Even if all your neurotransmitters are fucked up and you NEVER STOP HURTING, I still love you, Brain. Thank you for keeping me alive.