IVIG can help eradicate Bartonella infection: My success thus far.

Photo of the sun setting into the Pacific ocean at dusk in San Francisco, California, USA
estimated reading time: 5 minutes 12 seconds

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?

Since April, I’ve been having none–none–of those symptoms I talked about eight months ago.

My favourite part of this (aside from the “won’t have bartonella-induced damage as a possible cause of death” thing, of course) is that I finally have my personality back, without a lapse every five or six days. I am emotionally stable! I also think that toxoplasmosis may have been playing a far greater role than my doctors originally thought, because my level of extraversion is also completely gone and I am now a solid INFJ instead of the ambivert I’d been for most of my life… But that’s a topic for another day.

As I said the first time the bartonella was painstakingly beaten into remission, it’s been known to relapse, sometimes even up to 15 years later. But for right now? It’s over.

It’s over it’s over it’s over.

And now, to elaborate on all the things that IVIG has done and is doing: 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.” ♫

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. Continue reading “The Killer in the Crowd”

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

How do I sum this up in a title?

Avenue of the Giants, Humboldt Redwoods State Park

First, I can’t thank anyone enough for the response on my last post; it was quite unexpected. I’m glad to have touched the hearts of so many and to have received such a beautiful outpouring of love and support in the comments and e-mails that followed. It really helped me feel less alone, and you should all stop to think of how amazing you are for reaching out to a practical stranger. Thank you.

Right now the biggest thing on my mind is, a friend of mine who I wrote about several months ago, Brooke, is in the very final stages of myalgic encephalomyelitis. There were recently several weeks when insurance troubles denied her hospice care, during which she deteriorated very quickly. Last I heard, or anyone heard, she was re-evaluated and waiting to see if they would re-accompany her in her final days. I assume she’s received a decision from them thus far, but as anyone with or taking care of someone with M.E. knows, it’s all you can do to breathe sometimes, and I haven’t heard anything else. I do know she is getting at least some pain relief, and that is a blessing, and recent complications mean that it won’t be long…which is probably a blessing, too, if you ask me. She worked extremely hard to produce this post and a subsequent one to cover any confusion about her decision to deny “life saving” measures (questionable terminology) such as feeding tubes, which would only work to extend her suffering past her natural end. Her family will be delivering any updates as they occur…

[Edit: As of writing this, she’s managed to produce one more post clarifying that her amazing doctor convinced hospice to accept her for another 60 days. And amazingly, her bravery has led to being a part of an upcoming documentary about the severity of true myalgic encephalomyelitis, one that might chronicle her passing from this world in an effort that will accomplish her original goal of Documenting M.E. and all that it entails, to help spread the truth for us all.]

Also, I’m in the midst of a further relapse. My health has been in a state of decline since June, and additional stressor after additional stressor pushed my body over the edge. Or at least that’s what I assume happened, because I can’t pinpoint one particular thing that did it. I do know the emotionally draining act of writing a goodbye letter to my friend–because life happens–sent me into incapacitating illness for a straight week, during which I was struggling to remain conscious every single day. It was quite scary, but I’ve since become able to stay awake more easily…

It actually took me a while to realize I had relapsed. When I first felt the decline, I expected to recover in a few days, as my health is highly sporadic and changes every day, every hour, every ten minutes some days… And I even expected this recovery might be more extended because of the seemingly continuous stream of triggers… But while I was knocked out last week, it occurred to me that my waiting to improve had spanned about 8-9 weeks already.

I may write further posts on this and other topics, soon, but right now it’s easier for me to do other things that only require small periods of focus. I’m updating my website in several areas to include accurate information about the severity of Lyme disease, bartonella, and mycoplasma infection; a new section on Mindfulness; and a reference page for those needing help understanding/caring for people with severe myalgic encephalomyelitis, which will include Brooke’s post. (Speaking of which, Severe M.E. Awareness Day is August 8th. I don’t need reminded, though.)

Please continue to send your prayers, metta, and positive thoughts to our dear Brooke, her husband, and the rest of her friends and family. Also, to everyone who has recently subscribed here, thank you, and rest assured I will continue to write. (The Life Lessons section has a collection of my favourite posts, in the mean time.) My girlfriend might even be helping write a few sections and/or articles. I shall be focused on finding stability in this relapse.

If you think you can help with any of the sections or want to contribute either with writing or links that you’ve found particularly helpful, don’t be shy about getting in touch! This site is for my expression, but the information I stand behind should be for the benefit of all.

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 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. Pain is 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.

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, and 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.

I used to need 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 paid which alternated with 3-pain-free weeks, seemingly for no reason. Since my relapse in October, I’ve needed them every 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 sum this up. But when I talk about being in pain, to all of this is what I refer.


a rainbow at night