The Killer in the Crowd

♪ "Who is the betrayer, who's the killer in the crowd The one who creeps in corridors and doesn't make a sound." ♫

“Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

All right. Something I never considered the IVIG would do (and luckily so, or else I might not have went forward with it!) was that it would so very obviously do the one thing I’ve avoided doing at all costs for the past two years: Wake up my immune system. Because that would re-activate the bartonella like it has every time in the past since I contracted this parasitic-bacteria.

And that’s exactly what it did.

Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog for the past four years, but this post from January 2012 might help a little. I realized a year later my symptoms were re-emerging, with my bloodwork also showing increasing signs. I did everything I could not to take anything immune-stimulating and DEFINITELY not any antibiotics (which are extremely immune-stimulating), and because of this, it remained somewhat latent. I know from past experience that activating my immune system in any way triggers it to attempt fighting infections wherever they exist, despite said immune system not having everything it needs to actually fight. To make it acutely aware of bartonella’s existence would be to also initiate my imminent decline. The first time this happened, I was bedbound within eight months; the next time, within just four months.

Well, all symptoms that occurred periodically since the bartonella relapsed are once again emerging VERY reliably every 5-6 days (usually 5, as is the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before it fades as quickly as it arrived; the worser “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Its reliability started five days after my first infusion in October, and has continued ever since.

Some part of me cannot believe this is happening again; the other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection. I’ll try to write more on that, soon.

The worst flares, the ones that scare me, happen right before my infusions. I get IVIG every four weeks (right now) and the effects only last three weeks… So the fourth week, my immune system has fallen back to its normal deficient state, which means I am at mercy of an infection with little to give it pause. I discussed this with my immunologist today and he upped my dose; we’ll see with my next infusion (which will take place from my own bed in a couple weeks) if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than the office, and wasn’t even sure if I should go. But two minutes after praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. I was hydrated, for one, but I also no longer felt like I was being mauled from the inside out. The flare completely stopped.

For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.

If I can continue getting IVIG reliably, then maybe several months from now my new-and-improved immune system (thanks to literally thousands, upon thousands, upon thousands of donors) can finally overthrow this bartonella (and the other, less-rapidly-progressive bugs), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path. I regret nothing.

a rainbow at night

There’s this friend I have…

I make sure they take their medicine on time and I’ve helped them figure out what’s actually helpful so they won’t have to take any more than necessary. I’ve helped them find interesting pill cases to take off the mental stress of staring at a dozen pill bottles always by their bed, which I know they have to reach for multiple times a day. I listen to the extensive list of doctors everyone wants them to see, and help them figure out which appointments are really important and suggest they prioritize those above the rest. I’ve called and written for them so they can get any procedure possible done from home, so they won’t have to deal with the physical exhaustion of leaving the house “just” for uncomfortable treatments, or the mental burden of being surrounded by a medical establishment that has traumatized them over the years.

I’ve helped them find clothes that were of soft fabric to help with neuropathy; helped strategize their budget to find money for important purchases that make their life easier, like an overbed desk, a smartphone to stay connected to friends that only exist outside their city, and a stereo that uses bluetooth so they can listen to anything instantly using their phone as the remote. I’ve introduced them to mindfulness and stressed how important it is to take care of their inner world, almost more so than their outer body, because they can’t always control their circumstances, their disease, or natural physical changes, but they can always decide how to think about them.

I’ve helped them make extremely difficult decisions about their treatment and supported them endlessly in whatever they had to choose, trusting that only they know what’s right for them, and that no matter what, it will be the best for them and subsequently everyone around them, including me. I’ve shared with them any and all of my collective wisdom to help make their travels on this earth a little easier, hopefully none more difficult than they must be. And I’ve done all this and more because I love them and want their life to be the best possible. I’m already so proud of them, for things sometimes I wonder if they even realize.

I’m proud of them for getting out of bed whenever they have the option. I’m proud of them for not giving up on life after it turned out so drastically different from their plans. I’m proud of them for continuing to try new things whenever they have the capacity, and for acknowledging, accepting, and loving themselves whenever they DON’T have it. I’m proud of them for taking care of their body even though that can be a full-time job in itself, and they’re disabled. I’m proud of them for continuing to do the things they love, even though they had to learn to participate in new ways; I think that’s so amazing. I’m proud of them for reaching out to others even when not many reached out to them. And I’m very proud of them for letting go of the ones who never reached out to them, because I’ve seen that it left them more energy to spend on the people who truly cherish them. I’m proud of them for not settling for anything less than authenticity.

And once the time comes–because it will–for them to move forward to the next phase of their existence? Don’t be fooled by the media or even friends and family: They’re not losing any battle against disease. They’ll simply be finished here. To paraphrase Eckhart Tolle: You don’t “have” a life, you ARE life. They are Life. I am Life. You are Life Itself, and you cannot lose something that you are. And the friend I mentioned, is myself.

a rainbow at night

My tonsil got me potentially-life-altering IVIG therapy.

And here’s how.

Intravenous immunoglobulin (or IVIG) is a blood product made from thousands of donors to produce just a single dose, and used in the treatment of immunodeficiency and immune-mediated neurological disease, amongst other serious things.

I guess the story starts several months ago, when I began contemplating seeing my immunologist again to have my immune function retested. Not that long after, I began getting spots on my tonsils which, after having some lymph node pain in my neck and ear pain, I figured was the result of an ear infection trying to push its way through; the tonsils are lymph nodes, after all.

After my ear improved with tea tree oil drops for three days, the tonsil spots proceeded to go away…and then come back worse. There I was thinking my immune system had won against something, but no! Accompanying this, my neck and face felt like they were on fire, and I had stabbing lymph node pain from my face to my right arm all day. It seemed to irritate the previous nerve damage in my face. (And mind you, I’m already on ibuprofen and percocet daily–the pain was going through them.) I wondered if I had gotten some type of stubborn virus, began to worry, and decided I needed to make an appointment because I couldn’t handle this one on my own anymore. And getting that appointment went something like this:

Mentally pair my current problem with having wanted to get my immune system checked, anyway. Decide that’s perfect, I can do two in one; have a great feeling about that. Call to make an appointment and find out my usual immunologist left, so made appointment with new woman in the office. Suddenly start to feel uneasy that I made that decision while distracted by two people in my car. Call back to inquire about which immunologist in that office likes complicated cases. Receptionist says she doesn’t know, but the one I just made an appointment with was available more (in town more often), so that might be something I could consider; I say okay and hang up. Still feel uneasy and nagging intuition that I should call back AGAIN and take the cancellation they offered for The Other doctor, even though it was two days later than the one I’d just made and I was really hurting. Try to find an explanation for this intuition (because I just like to have explanation for things, if I can); begin doing research. Find out the Other Doctor loves complicated cases, AND he has thirty years experience, AND he’s the same doctor I saw twelve years ago at the onset of the M.E. (who helped me even without realizing it by giving me a steroid to slow down the initial inflammation). Immediately called back for a third time that day to take the cancellation–finally feel at ease.

I felt ridiculous calling back so many times to change appointment dates and doctors, but. Intuition over feeling silly for a few seconds. The strange thing was that when I called to change the appointment–which I’d scheduled with the reason of having tonsil trouble and needing to recheck my immune system function–they asked me, “and you’re beginning IVIG?” I said, “…No? No one has ever offered me that!” and she said, “Hmm, that’s weird! Someone wrote down that you were starting it!” Hmmm…

I’d almost canceled my appointment before ever going to see him, because the grapefruit seed extract/olive leaf extract rinse I’d been using had–between making the appointment while in severe pain and the days before the appointment actually arrived–helped my tonsil to the point of there being no spots left. “Luckily” I didn’t. By the time I arrived, he actually said it was fine!

Long story short, my current doctor, the “Other Doctor,” who shall henceforth be referred to as My Immunologist, is wonderful. He doesn’t know fully what M.E. is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgable that once you get certain infections there’s a possibility of them going chronic, so we didn’t have to argue over that. And for some reason, in his chart as well, was written that I was there to start IVIG. I told him the same thing, that I’d never even mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s a certain supply of IVIG and they don’t just give it to anyone.) So, staring at my page-long medical history and at a loss of how to help me, he offered it to me!

So, because of this tonsil and the other dozen quirky things that got me to that appointment at that time with that doctor, I have now gone through the system, gotten approved with the help of test results showing that my immune system is still.. well, my immune system, and both doesn’t have enough of things or produce adequate antibodies, and am starting my first IVIG infusion tomorrow, Monday, October 6th, at 9am at an infusion center. This will do either one of two things: Help me, or affirmatively rule out that this is never going to be one of my options so I can finally lay it to rest. But I’m obviously banking on it helping! And if I feel safe enough, they can even come do the infusions in my home!! Which, by the way? Is a method of infusion that my insurance had only begun approving three days before that appointment.

Of course, my tonsil has done what it’s been doing for literally months now and the spots have returned and even popped up on both sides of my mouth. We’ve at least ruled out strep, though. He immediately called me in an appointment to the local office to do a culture with his associate, the lady doctor, upon hearing the spots abruptly came back over the weekend and spread. Neither one of them is sure why this is suddenly happening, but she thinks those and my other lymph node pains have been the result of an overburdened lymphatic system and weakened immune system, because nothing else has changed besides my relapse back in June. Basically my body is probably just overwhelmed. I liken it to a skin infection I get on my neck only when my immune system is overwhelmed. This could lead to tonsil stones if it doesn’t clear up, but he’s hoping the IVIG will help that, too. Frankly, since the severe pain has subsided, I’m content to let it work itself out, now! (With some grapefruit seed extract rinse, to help things along.)

My favourite part about this, besides the actual IVIG, is that I get fluids before and after each all-day infusion because of my chronic dehydration. And I get to do this once a month. Which means I get fluids once a month. I haven’t said anything here, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June, which has helped a lot–now I just come very close but can usually “save myself”–but it’s still a daily battle. So if the IVIG goes well, I can continue getting monthly fluids as well, and dehydration will be one less thing on my balancing plate. I finally see a new endocrinologist later this month to discuss treatment for what was in 2009 borderline adrenal insufficiency, which should help that even more.

Another thing my bloodwork revealed was a high eosinophil count, which for me means the bartonella and/or mycoplasma are active–no kidding–as that was one of their first presentations. They’re not as high as they were before when things were progressing really quickly, though, so that’s comforting–maybe this IVIG can help subdue them! I’m very eager to see what will happen when I can actually make antibodies!

I’ve joined the Immunodeficiency Foundation, so if you’re on there, look out for me, or let me know your username! My thoughts about primary immunodeficiency usually take the back-burner in comparison to everything else I must balance, but when I think about it, living with it really does add a layer to my life that people with full-functioning immune systems just don’t have to worry about. I’m looking forward to being part of the support community.


As of this month, it’s now been two years since the big relapse (before this one) that made me stop all treatment in favor of, um, living… Now I get to try this! I’m thinking surely it will do something, for all of these factors to have led me to this point? I don’t believe in coincidence! I’ve been visited by multiple types of owls in my backyard almost every night since this whole tonsil thing started, despite maybe only hearing a wild owl three times in my entire life before this. Owls are symbolic of intuition, wisdom, the ability to see what others do not, and their presence announces a symbolic death, major life transition and upcoming change. 

Last night the Great Horned Owl visited me again.

a rainbow at night

My loss of ability to write posts like I used to has really depressed me.

I have so many scattered thoughts written down–probably seven long posts worth, by now–that can progress no further than fragmented thoughts. I do write things, but they’re pretty much gibberish until I edit them, and the editing doesn’t go very far anymore. I can’t just open a window, switch topics in my brain and begin writing on a certain thing whenever I want. There’s a name for this ability–cognitive flexibility–and I lack it severely. That’s not a criticism of myself, it’s just the truth.

According to Wikipedia (they can’t mess THIS up, right?), the areas of the brain responsible for handling cognitive flexibility are:

“the prefrontal cortex (PFC), basal ganglia, anterior cingulate cortex (ACC), and posterior parietal cortex (PPC).”

I probably need look no further than the basal ganglia, which we all know is a problem area in M.E. (And I do have a pons lesion, possibly others granted I haven’t had an MRI in years, that could be complicating things.)

So, to adapt, I’ll have to start typing, editing, and posting in a different way. I’ll have to risk not presenting my “best self” because those days of my old best self are few and far between. Now there’s a new version of me! And she has lowered cognitive capabilities.

Luckily, because of my high intelligence BEFORE illness (and that isn’t a compliment of myself, but another fact–I didn’t choose my genes), maybe it won’t be as noticeable as I’m predicting.

Things may be repeated. Things may sound like something entirely different than what I’m actually trying to convey. Things may not flow as effortlessly as I was able to edit them to do in the past. Things most likely WILL be out-of-order, jump around, and clamber to connect to the main point. But this is me now, this is M.E., and Lyme, and whatever else is in my brain.

Let’s do this.

a rainbow at night

(P.S. – Coming soon: Guess who just got access to IVIG? And you’ll never guess how it happened…)

Sisterhood of the World Bloggers Award

Thank you A Figment of Fitness for the nomination! I had no idea you were following me and wouldn’t have known had I not checked my Referrers sections–what a pleasant surprise!


(01) Thank the blogger who nominated you and link back to their site.
(02) Put the award logo on your site.
(03) Answer the questions the tagger has given you.
(04) Nominate ten people, and
(05) Make up ten new questions for those people to answer.

My Questions

  1. What made your today most special? There are a thousand special moments in my day. When I take my first steps; when I drink organic fair trade coffee and think of all the people who harvested it for me to enjoy in that moment; when I drink it out of the cup I bought in San Francisco, an impossible yet fulfilled dream; when I take my pain management medication and know that I’ll soon have enough relief to actually live another day; when my dog, Muffin, and I see each other for the first time; when I hear the birds outside chirping; when I turn on my music and can forget that I’m sick; when I turn on my phone and see text messages from loved ones; et cetera. What made today even more special was being able to work on this website, at my leisure, without much suffering to distract me, and create a new blog post. Lately all of my energy has been spent toward coping with new challenges, and it hasn’t left me with anything remaining to actually do things I WANT to do.
  2. Why do you blog? What a wonderful question. This blog started because I felt I was talking too much about health problems on my personal journal. I needed to write it down somewhere, but the way I was doing it made it seem like that’s all I was: Someone with health problems. So I made this separate blog to keep up with my symptoms, treatment, and developing issues. I made it public, and a few friends followed, but I didn’t think many people would actually read it–now, every month people from over 45 countries visit my site, to my utter astonishment. Somewhere along the line I realized my way of thinking and writing was helping people, so now I feel like I have to keep that in the forefront of my focus, because with that also comes a responsibility to make your intentions clearly known, and not use words carelessly. Luckily, this is also a main part of being Buddhist, so they both teach me to be mindful. Now my blog is less about every new health development as it is how I feel about living with them and what I’m doing to continue enjoying life.
  3. What is one thing that you wish people understood about you? Maybe I used too many brain spoons on the first two questions, but, I don’t know…!
  4. What is on your desk right now? If you’re not at a desk, describe your surroundings. I’m using my overbed desk and all it has on it right now is the remote to this adjustable bed and my cellphone (face down, because no distraction). Oh, and the laptop!
  5. What is your favorite season? Describe how it makes you feel. AUTUMN!!!!! The weather makes me feel my best, symptom-wise, which is a major perk. Since it’s started, I’ve been able to drop 400mg off of my daily ibuprofen dosage and 3.25 off my percocet. I love the cool air; being able to keep my windows open even at night, and listening to the frogs and crickets; making a pallet on my porch to sit outside with my dog, a cup of coffee, and read, or listen to audiobooks, or draw zentangles, or just watch the leaves fall and enjoy the fresh air. Fall has always felt like the real beginning of the new year, to me. Plus, it is THE BEST season for theatre! The best dance performances, orchestras, and singers come to town.
  6. What do you do when it is o’dark-thirty and you are stressing so much you can’t sleep? I don’t. There’s no point in berating your body for not being able to fall asleep, or cursing the moment for not being what you want. It is what it is and your body will fall asleep when it’s able. Audiobooks almost always put me to sleep at some point, or at least help me enjoy that time.
  7. What is your obsession? Nothing really comes to mind! There’s a lot I’m passionate about and/or really enjoy–music, learning, reading, documentaries, dance (watching), but I can’t think of any one thing I’d call an obsession.
  8. When you are walking down the street, do you pick the street side or the building side of the sidewalk? …What?
  9. What is the town you live in like? It’s the halfway point between a large city and small town. Not enough people to drive you crazy, not small enough that major necessities like hospitals and doctors are missing. Outside friends who visit have told me that the people here are nice, but I’ve been around nicer, aha!
  10. What is your favorite quote? Oh, lord. I’ll just put a few that I like, because I have tons.
    “When there is no enemy within, the enemies outside cannot hurt you.” (African Proverb)
    “What would you be like if there was nobody else in the world. Who would you be if the only opinion that mattered was yours. Because if you want to be truly happy, you must be that person.” (An Englishman in New York)
    “When a tiger, a powerful creature, forgets who he is, he will allow himself to be intimidated by a whip and a chair.” (Iyanla Vanzant)
    “Never pretend to a love which you do not actually feel, for love is not ours to command.” (Alan Watts)
    “Science is how God thinks.” (Deepak Chopra)

The Nominees

Your Questions:

(Just going to say this, now: I’m stealing some of the original questions–my brain is exhausted!)

  1. What made today special for you?
  2. Why do you blog?
  3. What is one thing you wish people understood about you?
  4. Which place that you’ve visited is your favourite?
  5. Do you have a phrase, mantra, or quote that gets you through those exceptionally-difficult days?
  6. What are you most proud of/feeling personally accomplished about?
  7. Do you have any creative outlets aside from writing?
  8. What are you doing/have you done to leave this world a better place?
  9. Do you enjoy documentaries?
  10. Is there a life tip you’d like to share?

a rainbow at night