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

A Dose of Reality

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 bug-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 happening.

I effectively went from walking “normally” in new shoes and 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 tried to wash my face with sunscreen, use toilet paper as moisturizer, pour my milk into a sauce bowl instead of a cup, and made accidental purchases online. I found myself standing in places I didn’t have any memory of walking. Yes, I remember all of these symptoms.

But still it helps to know why it’s happening. Not only that, but I’ve noticed I’m typically worse on weekends, again…an ominous sign from my bartonella days, but a fact nonetheless.

 

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.

The other part of me, is thankful for it, that I don’t float away into denial, and hopes that I won’t also 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 don’t ever want to seem like the decisions I’ve made or the way I live is something unattainable.

 

I’ve been relatively doing so-so. I never imagined stopping treatment would have given me so much of these months 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 which was keeping it in check, which I like, and yet this has resulted in more trigeminal neuralgia episodes and eye pain.

While the shot I had to attempt treating the occipital neuralgia didn’t go as intended–giving me odd side effects like falling backwards and an inability to recognize myself in the mirror, I suspect because of the brain lesion(s?)–it DID interrupt those signals, so it’s not as constant as it once was. There are still so many other types of pain, which was depressing to realize, but that one is better. Being on only half the pain medication that I was on before, this has unmasked many of the neuropathy symptoms I didn’t know were developing.

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. :) And as of my most recent echocardiogram, my heart function hasn’t worsened, so they don’t want to see me for another 18 months!

 

I’ve noticed I try to leave you all with something that’s helped me, recently. This time I offer you something for your friends and loved ones, and possibly as justification for your feelings, as well: The book, How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. It was mentioned on Facebook by the lovely Toni Bernhard, whose book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers changed my life a couple of years back. Both of these are also available on Kindle and Audible, so pick your best function!

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

Appointment recaps: Pain management and LLMD

I may have to use the sentence structure of a five-year-old for this. Severe brain fog has kept me from typing my updates. But I may be able to get it done if I just try another way of speaking. I have a few sentences typed up from last week to go on…

Two weeks ago I set two new blog records. I feel special! :) Probably the most amazing thing about this is that my words reach people all over the world. Had you told me as a child, One day you will grow up and share your words, and people everywhere, in dozens of countries, will read them and be helped by them, I would have called you crazy. Technology can be so amazing, when used in a way that is beneficial.

I had my usual beginning-of-the-month flare, but I was able to get through it a lot better because I have adequate pain management… Or suffering-management, I should say. So much coughing, coughing, coughing. But my appointment with the pain management specialist went very well and I have what I need to cope. I no longer have to ration out meds and I think I’ve come to terms with being a chronic pain patient for the time being. As long as I stick to the schedule and not try to see how long I can last without them, I am okay.

I am able to stretch daily again, which is amazing and a big help. With continued exercise I should keep my muscle tone and gain more muscle stamina, which is really important because goodness knows what I face ahead of me.

I had my LLMD appointment but we didn’t have much time to speak because he is busy and overbooked. But I’ll take a twenty-minute appointment in comparison to no appointment. We really didn’t have time to go over much, but I have been given instructions to attempt Amoxicillin; do a round of Diflucan to make sure yeast isn’t a problem; and see a chiropractor in the event that it may help my headaches. I’ll make another appointment in January.

Right now I am taking Diflucan, one pill a day, which I can handle as long as I am properly medicated. And taking my probiotics to rebuild my poor GI tract while I’m off antibiotics. Beginning “next year” I shall attempt treatment again… Everyone is hopeful that,  just like being properly medicated is allowing me to take the Diflucan, that perhaps having adequate pain management will allow me to withstand Lyme disease treatment. I am hopeful, too… Patients undergoing cancer treatment get help with their intense pain and discomfort; why shouldn’t I?

I won’t be treating all forms of Lyme. Ideally I’d be on Amoxil PLUS Biaxin PLUS Flagyl and treat ALL the forms so it would DIE AND STAY DEAD… But if we did that I, too, would die and stay dead, LOL. And Amoxil doesn’t treat Mycoplasma pneumoniae at all. But, if it’s all I can handle…? If I even can…! But who knows, maybe that is what I need right now, to ONLY kill some of the Lyme. Just like in the past when my body couldn’t deal with killing Bartonella and Mycoplasma PLUS Lyme, maybe now my body cannot handle killing Lyme PLUS Myco. Maybe now, I have to get the Lyme count down before I can deal with the Mycoplasma… Who knows!

On the plus side, that paper that explained how well various antibiotics attack Lyme, said “amoxicillin reduced spirochetal forms by ~85% – 90% and [cyst] forms by ~68%”–so that is good!

I’m just trying to go with the flow and enjoy my life in whatever form it is available to me. If you’re reading this, have a blessed holiday season and treasure your loved ones. :)

a rainbow at night

It feels like I’m talking about someone else’s life, sometimes…

So, in my last post, I said I’d give myself another two weeks off treatment and then re-evaluate my state of health to see whether or not I should restart treatment for Lyme disease. Something happened to help me make that decision.

I got an ear infection. Just a minor bacterial one which I get about once a year if I’m not already on antibiotics at the time. (Well, at least compared to a VIRAL ear infection, they’re minor.) I’m a miniature pharmacy so I already had the Z-pack needed to treat it.

I took one pill (and you’re supposed to take two at first, but I didn’t think that’d be smart for me…I was right) and spent that night feeling unimaginably ill while trying not to have a mental breakdown.

Fellow Lymies already know this, but: Zithro is the cousin of the medication I’ve been on (Biaxin) to treat Lyme disease, and also a potent treatment option in itself, so taking it affected a lot more than just trying to help my ear. There was fever, chills, constant shaking, dizziness, numbness, nausea, and a host of other things, like not being able to remember my best friend’s name (?!?!). But the real “kicker” was that I felt that way from just one pill

After being off meds for a month and a half, I can’t even handle one pill. :|

I can only handle half-a-pill, which is less than a child’s dose, and I can only hope it will be enough to cure my ear infection… But it’s definitely not enough to treat my disease. If anything, these tiny half-doses may keep things from progressing too quickly, but will also make me a target for drug-resistant bacteria, and then talk about being in a mess…!

This does take away the choice (mostly) of whether to begin treatment again or not, because it’s obvious I physically cannot do it, and mentally, I am still so, so tired.

Toward the middle of November, I thought I was doing better. I left the house three times in a week, and (not the same days, but) I had three consecutive days with no pain. So I thought I was getting over the relapse, until this happened. I was just a little crushed… But it is what it is, right?

I’m not sure what’s going to happen from here. My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. (And the Lyme disease is stage 3, meaning it’s.. everywhere. And it does not wait for you to be able to handle antibiotics.) But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.

If not, well… C’est la vie, que sera sera, and all that jazz.

 

I stopped doing the ability scale checkpoints because they are a reminder of how I haven’t made much progress since finishing bartonella treatment. Now, I don’t want to make that sound mediocre… If that disease was still present, I wouldn’t even have the luxury of wondering whether or not handling treatment was an option; I’d just be dying very quickly again!

But the truth is still that I kept waiting for a stable period to make an assessment, and that has yet to happen. I repeatedly had to pause treatment, take such-and-such different medication, take this-and-that medication to balance out the first one, then relapse, recovery, relapse again, and whatever progress I did make, I just kept going downhill again.

I made my last checkpoint at the beginning of this year and I can honestly say I am still at that place, in general, with the obvious adjustment that my symptoms are more severe for the time being due to relapse. But at least I am not any worse than that. I like being able to breathe and walk on most my days. And I do think I am a bit recovered from this relapse that began at the beginning of October.

I can handle longer periods of light, I can be out of bed more, and I have longer stretches with less pain. The translation of that is: I can usually use technology for several hours a day instead of bursts of twenty-minutes until I couldn’t bear it anymore; I make it out of my room several times a day instead of barely once, and sometimes I can leave the house; and my “usual” needed dose of pain medication is once a day, instead of always twice a day…and I have random days where I don’t need any at all. So,

  1. without intervention of medicines like caffeine (which is the only thing that enables me to do things like take a bath, or have a stable blood pressure), or pain medications (which are the only reason I can be active at all); and
  2. with 100% being completely recovered,

I am currently at 15% physical ability and 20% cognitive ability. As we all know, there are better days and worse days, but in general…

And with 100% completely symptom-free, I am at 10% symptom severity. Though I think the chart should be in reverse for that section, because initially “10% symptom severity” sounds as if I only have symptoms 10% of the time, and it’s the exact opposite:

“Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.”

 

Thankfully I do have medications to help me get through this difficult time, and all the support in the world from my friends, fellow spoonies, and doctors, about whatever decision I have to make. (My family unfortunately has no idea of the magnitude of this… Right now, I’m not sure I’d want them to know, until I can give them an idea of what we’re looking at…) And I have an appointment with a pain management specialist next week, and I see my Lyme disease specialist on the twelfth. So this is where I am at!

a rainbow at night

(P.S. – Today is my 2-year WordPress Anniversary!! I never imagined so many people would be helped by the words I share. Thank you, all. Stay strong with me!!)