IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.

[estimated reading time: 5 minutes 12 seconds] © a rainbow at night
After almost seven years with this infection, I think the bartonella may be gone for good.

If you recall from this previous post, I talked about how my health was either about to nosedive, or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened? Continue reading “IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.”

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.” ♫

Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.

But 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 since the beginning, but this short post from January 2012 might help a little.

I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.

Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of 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 fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.

A part of me just 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.

The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.

I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion 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 hope not; I don’t know if I could handle that, mentally.)

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of 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. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear 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 now 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 bartonella (and maybe 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

My Tonsil Got Me Potentially-Life-Altering IVIG Therapy.

And here’s how.

Intravenous immunoglobulin (IVIG) is a human blood product produced by filtering the antibodies out of thousands of plasma donations–usually over 10,000 per dose–and supplying them intravenously for the treatment of immunodeficiency, immune-mediated neurological disease, and dozens of other serious illnesses.

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 with 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 hadn’t gotten some type of stubborn virus, began to worry, and decided I needed to make that 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, because I am one. 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 have nagging intuition that I should call back AGAIN and take the cancellation they’d 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/the appointment with this Other Doctor.

Finally feel at ease.

I felt utterly 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 (“Other Doctor”), because between making the appointment while in severe pain and the days before the appointment actually arrived, my herbal rinse helped my tonsil to the point of there being no spots left. “Luckily” I didn’t cancel. (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 myalgic encephalomyelitis (M.E.) is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgeable 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 I told the receptionist, that I’d never mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s only a certain supply of IVIG, it’s extremely expensive, and they don’t just give it to anyone.) And so, staring at my page-long medical history, and at a loss of how to help me, he offered it to me!

Thus, 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 and gotten approved for immunoglobulin replacement therapy 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 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!

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 after the appointment, 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 (and at least this helped document my need to the insurance companies). Frankly, since the severe pain has subsided, I’m content to let it work itself out, now.

My favourite part about this, besides the actual IVIG, is that I get fluids after each all-day infusion because of my chronic dehydration and MTHFR polymorphisms, the latter of which make me extra susceptible to blood clots. So I get to do this once a month. Which means I get fluids once a month.

I hadn’t written about it here yet, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June and that did help a lot–now I can usually “save myself” when things get close to an emergency–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.

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! :D

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 year so far, after choosing to truly Live.


I’d like to start out this post with a bit of astrology, because I think it perfectly describes how my year has been thus far. (Bear with me!)

“Get ready to dig deeply in 2013, Leo. You’re going into a phase of complete and total metamorphosis. This will require considerable self-analysis and probing into your past patterns, but all the work will be more than worth it. You’re on the verge of discovering just how powerful, strong and resilient you are at your very core. If you have ever doubted your strength, after 2013 you’ll never question your resourcefulness again. Saturn, the great karmic lord of trials and tribulations, will be camping out at the base of your horoscope until 2015, so you’ll have plenty of time to delve into the depths. Family issues and psychological patterns inherited from your parents will come to the surface this year, making your more aware of — and able to avoid — negative patterns. Wake up, Leo! Get ready for a major rebirth.

Lucky Jupiter will continue to bring good fortune to your social sector and help you dream big until June. You’ve been so blessed with the amazing people you’ve met over the past year who have helped you reach your goals. The second half of the year, you may want to pull back when Jupiter enters your retreat zone. This is a time of dreaming and scheming before launching into the next chapter of your life in 2014. So the first half of the year will continue to be incredibly social, but give yourself permission to come back to a more internal and creative space during the latter part of 2013.

The eclipse patterns of 2013 will shake up both home and career sectors, so get ready for rapid advance and decline in both arenas. Don’t get too attached to any of the gains or losses in either of these life departments, as they will constantly be in flux until you reach a healthy middle ground — and you will!”

I was expecting such a popular site to conform to mainstream and just dish out stereotypical messages, but that right there sums up everything I’ve felt about this year, all the way down to the little details! In June, I even talked to my friend about finally becoming settled and just resting starting in July–after the busy first half of the year, it’s what I want, now–and even THAT is in there! Incredible. I encourage you to click and see if yours applies as much as mine does!

Lion representing the Leo sign in astrology. (...

So, if you’ve been following my journey through the year so far, you’ll know I stopped treatment for late stage Lyme disease in October of 2012. After several months of grieving, I decided I was going to truly live, because I don’t have time to wait anymore for a better day when I might feel better. I also have Myalgic encephalomyelitis, for which there is no cure, and bartonellosis, which was once cured but now has crept back out of remission. I’ve been focusing on symptom management and taking care of myself as best I can with food and whatever “exercise” I’m able to handle. Because of the incredible planning skills I’ve accumulated over the past thirteen years of chronic illness, but most importantly, proper pain management, I’ve been able to put all my spoons in one basket each month, and have incredible adventures. I attempted them even at the risk of symptom progression because realistically speaking, there will be no better time than right now. The past six months have been my surge of energy that comes from stopping toxic treatments, and I used it well.

Life is a precious gift. Don't waste it being ...
Life is a precious gift. Don’t waste it being unhappy, dissatisfied, or anything else you can be (Photo credit: @Doug88888)

In January, I met my extended family for the first time (yep). February was pretty rough and scary, after having to be on antibiotics for a week to get my teeth cleaned, finding out I had a new genetic diagnosis, the passing of a friend, and the one year anniversary of the passing of my Dad. So most of it was spent in recovery. But I did celebrate Valentine’s, Mardi gras, and a friend’s birthday to the best of my ability. In March, a good friend came to stay with me for a month, and we had innumerable outings to parks, new restaurants, coffee shops, and a beautiful experience at the orchestra. In April I went to see a world renown ballet group (my first trip to such an event in at least twelve years), sitting front row balcony because a wonderful family miraculously had a spare seat; they turned out to be the same family who was sitting behind me the night I went to see the orchestra in March! I also met two amazing local friends with whom I had several lovely visits.

In May, I went with a friend from Florida to see the Dalai Lama, and as if that weren’t enough, perused my favourite city on a vibrant Saturday night, admiring the culture and appreciating everything; I watched the sun set from the top of a seventeen-story building. My family hosted a garage sale for me and I got rid of 90% of my stuff. I went to the aquarium for the first time in seven years, with friends I haven’t seen in eight years, and some new friends. In June I went BACK to the aquarium with my family, which, if you knew how rare it was for all of us to be free at the same time, you’d understand to be something of a miracle. Then my best friend came from across the country to visit with me for a week; several times we stayed up til 5am giggling at nonsense like we were teenagers. I witnessed the historic removal of DOMA and Prop 8 from our country’s legislation. I planted sunflowers. I received a message from my all-time favourite musician via Twitter. And I rediscovered my love of electronic music.

As I said, in July I began resting, but something incredible happened, still. The love of my life, the best friend who stayed with me in June, told me she loved me, and since I’ve also been in love with her for the past year, we became a couple. ❤

Even still, each month I successfully set out to watch one new movie in theatres, “read” one new audiobook, and eat at one new restaurant. For now, I take a much-needed break, as my body tries to hold itself together after all that activity. But in August I’m going back to the heart of New Orleans for a week for my birthday, to stay with another friend who is also coming cross-country. And in September I get to spend more time with my girlfriend as we arrange another, longer visit. After that, who knows…

But I’ve been divinely assisted in everything I’ve set out to do, and whether this year turns out to be my last truly being able to function, or just a temporary rut (however doubtful that seems), I can go forward knowing I gave it my all while I still had the chance. I know without a shadow of a doubt that I made the right decision to stop treatment and focus on having a life.

I have more to say, how symptoms are going, what happened with the doctor who wanted to erradicate some of my nerve endings… But that’s for another post. To be continued…?

a rainbow at night

A Dose of Reality: Flare-ups, Symptoms, and Emergency Rooms

First off, a huge thank you to those who have expressed their support and gratitude of my recent writing… I was not expecting it. I have read your words and I want to reply as soon as I can. Right now I feel an update of sorts is in order. Forgive me while I use my spoons for expression, but know that I am actively awaiting the right words to respond to the support you have offered in my direction. :) You help me feel less alone, and on weekends like this one, I really need that…

At the beginning of May I wanted a mini-celebration of the fact that I’ve been off treatment six months and I am still walking okay. So what better a way to affirm my functioning feet than with new shoes!

K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30
K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30

This event was right before my monthly Lyme disease flare, which still happens around the beginning of the month. I forgot about it this time, so it wasn’t until day three of being in bed that I realized why all these symptoms were suddenly happening.

I effectively went from walking “normally” in new shoes, eating at my favourite foodie joint, to being in bed four days, excessively sleeping through over half of it, and having seizure-like activity again.

Yesterday, I felt as if every inch of me was buzzing, vibrating from the inside-out. I also tried to wash my face with sunscreen; use toilet paper as moisturizer; pour my milk into a sauce bowl instead of a glass; made accidental purchases online; and found myself standing in places I didn’t have any memory of walking.

Yes, I remember all of these symptoms, unfortunately.

But still it helps to know why it’s happening. Not only that, but I’ve noticed I’m typically worse on weekends, again, i.e. every 5-7 days…an ominous sign from my bartonella era, but a fact nonetheless. Please, no.


My ego said, I would rather all this NOT occur immediately after I finish celebrating how relatively well I’m functioning after six months with no antibiotics! Why did you have to remind me, right now? Maybe I wanted to forget for a little while, just how much my body is going through, just how sick it is…

Another part of me is saddened at the reminder.

And another part of me is actually thankful for the reminder, because it won’t let me float away into denial, while at the same time hoping that I won’t sink into despair…at least not for too long.

See, I go through the same emotions as everyone else. I don’t ever want to seem like I don’t.

I’ve been relatively doing so-so. I never imagined stopping treatment would have given me so much of my life back, these months that I would have otherwise spent in misery with no real benefit except more worsening. Instead, I have more good days right now, I’m determined to use them fully, and I can be mostly comfortable.

Symptom-wise, this has developed:

  • I consistently see the squiggles, black dots, and smoke-fog illusions in my vision.
  • My hands go numb more often, and various irritated nerves cause intermittent curling of my fingers.
  • There is more numbness in my feet, and more of the old “fire foot” sensation.
  • I have more heart palpitations and trouble staying hydrated.
  • My left leg buckles more frequently.
  • I get more spasms in my back.
  • I get choked more easily.

I recently returned from two ER visits with a random virus…and just like after my last viral attack in December/January, my vasculitis is temporarily on hiatus. So for now I’ve been able to stop the daily ibuprofen that helps keep it in check, but which has also resulted in more trigeminal neuralgia episodes and eye pain.

The shot in my neck they gave me to attempt treating the occipital neuralgia did not go as intended, giving me very odd side effects like falling backwards and an inability to recognize myself in the mirror (?!), I suspect because of the brain lesion(s?). Even just sitting down in my wheelchair, I was so spaced out and off balance that everyone in the office thought they’d given me a sedative–nope! On the plus side, it did seem to interrupt the constant barrage of pain signals coming from the area, so it’s not as constant as it once was. Being on only half the pain medication that I was on before, unmasked many of the neuropathy symptoms that up until then I didn’t know were developing; another thing I wasn’t expecting.

My favourite bit of news is that, I found out if I cover myself in sunscreen before being exposed to sunlight, the vasculitis doesn’t flare up. :) Annnnnnd as of my most recent echocardiogram, my heart function hasn’t worsened, so they don’t want to see me for another 18 months!

a rainbow at night