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

What My Pain is Actually Like

It occurred to me one day several months ago that I’ve never stopped to answer a question people may have, the same question I often wonder about others in my situation: When I talk about being in pain, what am I actually talking about?

In my case I’m talking about severe head pain, and what some call “malaise,” but… Malaise is what you call it when you are sick and you feel “off,” and unwell, and basically.. gross. It’s also a term you can use for having something as simple as a cold or as insufferable as end-stage AIDS, much like a fever has drastically varying levels of severity.

In “malaise” standards, what I feel is like my immune system is fighting to save my life but it may or may not actually take me down with it. Most types of pain are usually localized, or at least, if it’s everywhere it’s an identifiable ache. This? Maybe I should invent a new term.

Deathlymalaise. Yeah that sounds about right.

What happens in my newly coined “deathlymalaise” (feel free to use that), is this:

  1. I always have “the” headache with it, the one I’ll discuss in a moment.
  2. I have a low-grade fever, and I alternate rapidly–or maybe there is only the sensation of rapid cycling–between uncomfortably warm and sweaty, and clammy, cold, with freezing and numb extremities. It’s like when you have the flu and every five minutes you’re either tossing the blankets across the room or clambering to collect anything made of fabric and burrito yourself in it. My GP says this is my immune system. Apparently it’s trying to figure out what to do with itself.
  3. I feel dizzy and there is often a “buzzing” sensation, but whether it’s nerves sending wrong signals or my vascular system trying to sustain normal circulation, is anyone’s guess.
  4. My lymph nodes, particularly the axillary and cervical nodes (under your arms, and around your neck), have a constant, dull ache, and get stabbing sensations.
  5. I get muscle spasms in my neck, back, and all around my abdomen in general, that are so sudden and severe I usually end up screaming.
  6. I feel a burning sensation in the nerves in my face, as if they were on fire from the inside-out. I think it comes from the same inflammation responsible for my headache. The trigeminal neuralgia is thus usually activated and I have to stop myself from clawing at my face–that wouldn’t help much, now would it?
  7. I feel as if I’m going to vomit, but I won’t let that happen–I take Zofran as necessary.
  8. My joints–moreso on my left–swell and get stiff, difficult to bend or move.
  9. There is substantial fatigue during these “bursts” of deathlymalaise, but sitting or–more appropriately–lying in one place is usually not an option because this is the kind of suffering that, on the pain scale, would be at the level that it interferes with your every thought.

I’m a complete and utter wreck. And please remember, this list is only covering the malaise part of the illness, something that has been very prominent since The Big Relapse. It’s not medication withdrawal, because these symptoms are part of the reason I started taking anything to begin with, and it’s not herxing. It’s just disease. It makes me uncomfortable to even type that, but it is what it is. I can’t sugarcoat something like this.

[ETA, 2016 Feb] In Dr. Hyde’s book about Myalgic Encephalomyelitis (which back then in 1992 he abbreviated as “M.E./CFS”), he describes our malaise like this, under “Pain Syndromes Associated with [M.E.]”:

” ‘Malaise has probably occurred in every [ME epidemic] described in the literature.’ Malaise is accentuated in the Initial Stage and it recurs for as long as the disease process exists. Malaise is almost impossible to describe. It is often referred to as the pain and discomfort that one has during the acute phase of an influenza. However, it is not always the same. The patient feels terrible, feels as though he is about to die.

“It particularly injures the sensory and dulls the cognitive abilities of the brain. The pain seems to originate everywhere, both on and within the chest and abdominal areas, head and extremities. The rapid muscle and brain fatigue that is normal in [M.E.] becomes accentuated.”

As you can see, what I described when I first posted this in 2013 is almost exactly what Dr. Hyde wrote; I was absolutely floored when I read it, and honestly, most of the book is like this: full of specific, uncanny validation about all the quirky things that occur in this disease. If you have M.E. I highly suggest you buy it while it’s still available.

Some of the other things I wrote are very specific of Lyme disease, such as the burning in my face where the infection damaged multiple nerves, and the “buzzing” sensation, which many Lymies describe as, it’s like you’re sitting atop the hood of a car while it’s running. [/ETA]

I usually feel aghast–but almost in awe–at the reality that a person could possibly feel so horrendous, and helpless at the thought that a hospital–the place you’re raised thinking can always help you during any health crisis–cannot do anything, because there is nothing to stop what’s happening. How do you explain to someone how terrible all that feels, with the word “malaise”?

Several of my friends who also live with Lyme & Company admit to feeling this, some even writing letters or notes to loved ones during the worst “episodes” because they think surely something must be about to go very, very wrong for the human body to give out all these warning signals.

They usually say, “I feel like I’m dying.”

We really do.

The progression of my headaches has been a monster all its own. Their onset began with occipital neuralgia four months after my tick bite, almost seven years ago. Bartonella came with its own, mostly frontal-oriented headaches; I don’t have those any more. But almost without fail, I have had a particularly severe headache for 4-5 consecutive days every four weeks since the Lyme invaded my nervous system. Now, that exacerbation happens about every two weeks, thanks to the Mycoplasma (or at least, I assume).

I used to requite prescription-strength medications for breakthrough pain only a few times a year for the attacks of occipital neuralgia. As things steadily progressed (especially within the past two years), I went from needing them an average of 1-3 days per month, to having 3-week-long bouts of unrelenting head pain which alternated with 3-pain-free weeks, seemingly for no reason. Now, since my relapse in October, I’ve needed them every single day except 1-3 days per month. I guess all of this is why needing them so much frightened me: I wondered–and still wonder–if there is no turning back from this point. Regardless…

This head pain is a throbbing sensation at the back of my head, the base of my skull and down into my neck. I wouldn’t outright call it occipital neuralgia, because my attacks of O.N. are even more severe and almost completely untreatable. But otherwise, it’s just like them. Baby neuralgias? They even exhibit the so-called “ram’s horn pattern,” and the top of my head often goes numb, and I am sensitive to anything touching my scalp. There is no sensitivity to sound, but extreme sensitivity to light. I get bursts of nausea. Since vasculitis has been such a major feature of this relapse, these “headaches” may have some vascular component.

As of right now, later this month my pain management doctor wants to try a shot in my neck. I’m uncertain is he intends a nerve block for O.N. or another route, but since this has gone on so long, it’s time to try something new.


There’s not really a pretty way to close this article. But when I talk about being in pain, to all of this is what I refer.

a rainbow at night

Trigeminal Neuralgia: A Consequence of Lyme Disease

…Or bartonella. Or mycoplasma. Or similar infections that are commonly found in the same tick that carries Lyme disease. Unless you’re like me and you happen to get them from other sources like fleas, because you’re immunocompromised and collect infections like some people collect stamps.

I’m not sure which is the true culprit. I know I started getting occipital neuralgia about four months after my tick bite, so that is definitely Lyme disease-related, but I haven’t had an attack of that in a long time; I think it’s been a year?

My serious cranial nerve involvement began when I got Bell’s Palsy immediately after contracting mycoplasma pneumoniae, an infection that usually causes “walking pneumonia” but has been known since the 1970s to also wreak havoc elsewhere, like the nervous system. It can cause just about everything that Lyme disease can, and persist even after treatment by mimicking the body’s own cells. My right eye twitched and my face drooped. I’ve mostly recovered, but some of the damage is permanent. Then my left eye began twitching and it got damaged. That is also permanent. It was all downhill from there as far as nerve damage goes, but I’m here to talk about the ones in my face.

I began treating with Rifampin and Doxycycline in January 2011, and all hell broke loose: That’s when the autonomic neuropathy made itself apparent, culminating in its diagnosis a few months later. I can’t coordinate how it all fits together, but I know my vagus nerve became damaged, my trigeminal nerve got involved somewhere, the Bell’s palsy is a factor (i.e., damage to the seventh cranial nerve, literally called “the facial nerve”), and my migraines are connected.

When the autonomic mayhem landed me in the hospital, I would try to eat something, get an “episode” where my vagus nerve would trigger all sorts of things it wasn’t supposed to, and I’d get a migraine. I got so many migraines I had to be on Topamax for almost a year. Now these days, instead of my nervous system having a meltdown, I’ll sometimes get facial pain when I start digesting, again triggering migraine-like pain on the right side of my face until the digestion stops. This can happen even if I haven’t eaten, but the act of eating can apparently be a huge trigger for trigeminal neuralgia; more on that horror story, below. But how did they all end up triggering each other?

  • The trigeminal nerve is implemented in migraines and facial pain.
  • The facial nerve can also be implemented in facial pain (ha, no kidding!), and the tongue numbness I get.
  • Episodes of trigeminal neuralgia can involve the trigeminal nerve and the facial nerve simultaneously.
  • And the vagus nerve–as it pertains to this post–is responsible for digestion-related reflexes…

But again, how did it come to be that my vagal reflexes got connected to my trigeminal response, in ways they previously were not? All I know for sure is one or more of these infections attacked my cranial nerves, and I’m left with odd, painful remnants as my body has attempted to heal.


After my last post, the “tension-headache-thing-that-wasn’t-quite-a-tension-headache”-thing went away and was replaced with the worst episode of trigeminal neuralgia I’ve had to date. Perhaps the tension-like pain was a precursor? (A Lymie friend on Twitter mentioned that she often gets headaches or migraines before her trigeminal neuralgia attacks, too.)

The best way I can think to describe what happened is that, I ate a bowl of crunchy cereal, and immediately after it felt like my teeth were going to explode. It’s one of those things where, if someone else told me the level of pain they were in, I would swear they were exaggerating because how is that possible? My other attacks have been similar–extremely severe, extremely sudden pain that makes you start shaking from its intensity–but it’s never lasted quite this long.

I remember a long time ago writing about another unusual headache, something that acted like “an ice pick headache that keeps on going.” In hindsight, that headache that felt like someone stabbed me in the forehead may have been an episode of trigeminal neuralgia, too. :\ It certainly sounds like it, from what I wrote.

I hate how deceptive it can be, when it starts to fade away only to attack you suddenly again. It took several days to completely go away and stop fading in and out. I have moments of unexplained facial pain daily, anyway, but nothing so severe as that. For my usual, spontaneous facial pain–the kind that is often tied to my digestion for some unexplained reason–butalbital is a huge help. It’s a huge help in my neuropathic pain in general, actually, even though I’ve never heard of anyone else using it for that. Half a tablet of Fioricet (or Bucet, which is the same as Fioricet but without the caffeine; most doctors don’t even know it exists) and that kind of nerve pain is usually gone.

Like occipital neuralgia, nothing much helps trigeminal neuralgia, or at least nothing that my system can tolerate. (Things like carbamazepine are completely out of the question for me.) That night, I was already on hydrocodone and ibuprofen, but had to take twice as much as I usually need, and it still only dulled it enough so that I wasn’t shaking. I couldn’t lie down and put any pressure on my skull until it began to ease.

The gratitude I had for being able to take those pain relievers cannot be put into words. And I’m still trying to wrap my head around the fact that something can hurt that much, and that I went through it. If you’d have told me two years ago I’d be going through something that would make my face feel like I was being stabbed and my teeth as if they were going to explode out of my skull at any moment, I’d have called you crazy.

I feel so much for people who have to go through TN, especially if they have no idea what is causing it. At least I know what is causing mine.

If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate Medical Doctor or LLMD, you probably do–you can read this and call IGeneX to order a testing kit for your doctor. Igenex has an accuracy rate of 95% and tests for all possible reactive bands, unlike standard testing which only checks you for the most common thirteen and produces a staggering rate of false-negatives. Additionally, you may watch Under Our Skin, an excellent documentary film containing people with illnesses like Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson’s, and ALS, who found out Lyme disease was the cause of their symptoms; most recovered. (Not in the US or want more help? Click here.)

a rainbow at night

(Postscript: This is not related to TN, but with this month’s Lyme flare up, I had my old parkinsonism symptoms of slow movements and “freezing” while walking. It’s been a few months since I’ve had those, and they definitely caught me by surprise, especially with how slow my hands were functioning. Those of us with Lyme disease know how startling it can be when you’re doing (relatively) “okay” then suddenly your body thinks it has succumbed to Parkinson’s overnight! Luckily, as usual, it only lasted a few days and I am all right, now.)