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

 

No more minocycline and guilt over happiness.

The reason I have this blog is to keep track of my symptoms and occasionally share a ramble. I never imagined I’d be getting thousands of visitors… Thank you, for your views and your comments, and I sincerely hope the things I’ve written can help someone else. Many of you have shared that they have, and I will always feel blessed by it.

So yes, I need to update on a few things for future reference… The first one being: My brain fog. If I haven’t said it before, let me say it now: Flagyl gives me the worst brain fog ever. I’m glad I only take it four days a week. My typing has been fairly atrocious lately (sometimes worse than others) so I apologize in advance if this entry doesn’t come out right. I know some of you have to translate it into your native language and this one might not be.. erm.. see, I can’t even think of how to finish that statement! :\

My eyes have been hurting for weeks. I’m so sensitive to light, and I get stabbing pains in them. I’ve spent the past week in the dark. My nervous system has been very sensitive, in general, since I started treatment, however my eyes don’t usually hurt this much… I’m wondering if the Nasonex has anything to do with it. I’ve taken it for.. probably a decade, now? But I had a two year break, and I don’t recall it having an accompanying Glaucoma Warning in the past…? But it does, now. I’ve stopped needing it, so I stopped it two days ago. Today my eyes ARE better, but it’s impossible to draw any conclusions from that. It’s probably just coincidental timing and I’ll get a severe case of eye pain tonight like I did yesterday, aha. If in the future, however, I start Nasonex and get crazy eye symptoms, I’ll know something.

It would appear that warning-hive I got a few weeks ago held true to its title. On the 12th of May, I got very, very sick, and had to stop all antibiotics. Aside from the fact that I felt completely flu-ish with a severe headache, I’d gotten to the point that I could not eat anything, even drinking water was becoming difficult, and amassed in me shaking, becoming dehydrated, and needing Zofran three times a day to keep my nervous system from having a meltdown. These are the same things that the Doxycycline did to me last year before I was hospitalized for five days. We were worried that the minocycline might do this, too, which is why we’ve been easing into it for all these weeks… It’s clear now that I can no longer handle the tetracyclines. I’m just glad that (1) I knew what was about to happen so I stopped the medicine in time, and (2) that I basically had available to me the same medications that they gave me last year to pull me through it (except re-hydrating took a tad bit longer without an IV). After three “missed” doses of antibiotics I was able to eat a chicken sandwich, and it’s been a steady improvement since then…well, at least in regards to being able to eat and keep food in my system.

Wednesday I couldn’t breathe again, having much the same symptoms as two weeks prior. And I’m still having that problem: I cannot breathe when I sit up, but as long as I’m lying down, I’m pretty much okay, though I still have to gasp for air every so often.

Now, I’ve had flare-ups every two weeks for almost two years, now–since summer of 2010, I believe, when I took grapefruit seed extract (GSE) for a few weeks–so this isn’t too much of a shock. But I usually have Lyme symptoms during those flare ups. This time, I haven’t. At all. I’ve had lung pains, and coughing a lot, and an inability to breathe right. That can’t be Lyme disease?

The reason I assumed the GSE had woken up the Lyme disease when I took it, and gave me flares every two weeks instead of every four weeks, is because GSE is a supposed to be a destroyer of Lyme cysts (i.e., the cysts that the bugs were hiding in, open up and start causing symptoms, then you can kill them with antibiotics)… Well, I’m on Flagyl, which is THE cyst buster, so could that have anything to do with my minor Lyme symptoms during these flares? Or is this not Lyme disease at all, and is it Mycoplasma? My money is on the latter for this particular scenario, given the hive and the breathing problems and lung problems which are all the things that I was worried might happen. :\ Because I tell you, my other symptoms are very mild. Shockingly so. When I was off antibiotics this past week, my neuro symptoms barely even flared up! I’ve been having mild “hot foot” sensations in my right leg, and that’s about it. (My tags say I last had that.. well, let’s just say that every time I’ve mentioned it, I’m also talking about Mycoplasma… The evidence mounts!) Nothing went to attack my arms, nothing started quickly progressing like a starved animal waiting to pounce… That is very exciting, and makes me feel like we’ve at least done something the past four months. As I usually say, time will tell! I’ll keep updating on it, and hopefully a pattern will emerge.

Until then, we just make sure I’m on both Lyme and Mycoplasma antibiotics. So I started Biaxin today! I’ve heard great things about this one, and it treats borrelia burgdorferi and mycoplasma pneumoniae and even bartonella, in the event that some of those critters have survived and are saving up for a revolt. Also, the pills are bright orange!

Ah, and so far, I feel accomplished with my goal to not be advocacy-frenzied. I’ve reposted/retweeted a few things, but that’s about it. Life is good, despite everything. I’m happy, even though I feel like I have society and ten thousand other sources telling me I’m not allowed or shouldn’t be… I’m sick, I’m “supposed” to be complaining about everything, right? Ha. Last week I felt the urge to announce, “I’m so happy to be alive.” Because I was. Because I am. And afterward I felt so odd about it. One friend said, “You feel odd because society tells you to complain about your woes. You’re happy because you see what matters most.” Which is pretty dead-on. Another said that people see someone like me “who is thankful for another day and enjoys life as much as possible, and they make a hateful comment” because they’re trying every materialistic avenue available to them and still can’t feel happiness and appreciation.

I suppose when it comes down to it, I was worried someone would take it in the wrong way, or find a way to interpret it negatively, or think I was just “saying it to be saying it” even though I really do mean it. Also, I didn’t want it to sound conceited? I know people going through minor troubles who are very bothered day in and day out, and I have.. erm, well, a lot of daily troubles and suffering and yet lately I have maintained happiness. It’s just a fact. So I don’t want it to sound like I think I’m better than anyone, or something. Because I used to be bothered by daily insignificant things, too! I’m just so happy to not be that person anymore, to have inner joy no matter what, and I want to keep that balance between expressing that happiness about it, but not rubbing it in everyone’s faces. Then again, I only have so much control over how other people interpret what I say, especially when I know my heart is in the right place: Again, balance.

a rainbow at night

First post of 2012! (Some pictures, a painting, and a recap.)

Your 2011 year in blogging

A New York City subway train holds 1,200 people. This blog was viewed about 7,300 times in 2011. If it were a NYC subway train, it would take about 6 trips to carry that many people.

In 2011, there were 99 new posts, growing the total archive of this blog to 123 posts. There were 37 pictures uploaded, taking up a total of 6mb. That’s about 3 pictures per month.

The busiest day of the year was December 29th with 83 views. The most popular post that day was How I Forgave the Doctors That Called Me Crazy.

Well thank you, everyone! I’ve recently begun getting a lot of hits on my black bean brownie recipe, too? Who would have thought!

I hope 2012 will be a productive year. In just a few weeks I’d have completed my bartonella treatment, hopefully. More on that once I actually get there, but I haven’t–to my knowledge–had any reliable exacerbations every five days. ;) My LLMD was impressed, and said one more month of treatment, to be sure.

Okay, so I’ve managed to post about life lessons, recipes, and articles lately, without any mention of how I’m actually doing… So symptom charting, right! I had a mini-flare (???) around the 16-23rd of December but it wasn’t too severe–the main symptom was excruitiating fatigue. For the past five days (about) I’ve had lots of what appear to be Lyme symptoms. This is pretty typical since I often have a Lyme flare up at the beginning of the month. The “fire foot”/”hot foot” sensation, in my left leg. The “dragging left leg” thing, yesterday. Numbness in my left leg, and today in my hands. Facial nerve disturbance (pictures I take of myself during this scare me a little!). Severe cognitive dysfunction. Joint pain, nasty headaches (but none today!), worse fatigue, minor palpitations, internal tremor, eyes going every-which-way, seeing things, temperature of 99.5, complete lack of appetite, needing ibuprofen every evening. I stopped having headaches for I think a week…then they were back. The past week I’ve also found several bruises–one on my ankle, one on my shin, one on the back of my arm, and another on the back of my elbow on the other arm. One actually appeared on a day I know I didn’t hit anything, so I’m assuming them to be sporadic. Anemia-related? It took me about a week to recover from Christmas, but it went very well–I took lots of rest breaks!

Randomly, my new favourite thing to put my lemon juice in, is pineapple juice. Three ounces of pineapple juice (natural, not concentrate!), 1 or 2 tablespoons of lemon juice, and three ounces of sparkling water–detoxing never tasted so wonderful!

Also randomly: I’ve developed a new migraine trigger of…cheetos. Yes, cheetos. Apparently fake “cheese flavoring” is not something my brain likes. Nor is the sucralose (splenda) I found in my antacids, of all places!

Since my last ability scale checkpoint in October (which was right after I started Bactrim, but before the Lyme had a chance to hit me again) I have gone back down a bit. In general, I was thinking last week that.. as much as I hate to admit it, I think I’ve overestimated myself on the ability scales, out of genuine forgetfulness of what it’s like to be healthy. I have been ill for a length of time that begets forgetfulness about what normal people, with their non-diseased bodies and mitochondria, are capable of…
I remember enough to know that I could go go go all day then sleep it off and be fine; that I could lift things all day and just be sore from it, not experience muscle paralysis; that I could think about a tedious problem (technology or math) and not get physically ill from the mental exertion; and that I could keep things in my short-term memory for more than a few seconds. But for the most part, I forget that my level of improvement is completely relative, and that my 40% or 50% is completely different than someone else’s. Perhaps those who read my blog and happen to be less ill, or those who are healthy, don’t realize that, either. It might really become a problem if I were to tell someone in charge of determinig my disability status what level I think I’m at, because 50% recovered to me, just means being able to take care of myself and my basic needs!
None the less, since my last checkpoint, I am for now at: 15% physical ability, 15% cognitive ability, and 40% symptom severity. I’ll reiterate that bad days are worse, and good days are.. well, better/higher up on the scale. For instance, today I was up a lot more, and New Year’s Eve was also a better day in which I stood up a lot and didn’t need much assistance. But in general, this is where I am. I need caffeine to take all my baths, and even then they are often an immense task, but I’m just so glad I still have those options!

I’d like to end this with some pictures I took on a day when I was bedbound, as well as one I took when I wasn’t! Afterward, a painting I did a couple of weeks ago, when my days were horrible but, for some reason, I felt better for an hour or two each night (probably from resting all day).

Clicking them will obviously enlarge them in the gallery, then if you want to read more about a particular picture (or comment), click on “permalink” and it will take you to the individual description page. Happy New Year, my fellow spoonies!

a rainbow at night

So, is everyone surviving the holidays?

I’m making it a goal to NOT be hospitalized or require any emergency services this December, as the past two years haven’t been very kind to me. First a ridiculous bartonella flare, then almost going into probiotic-induced septic shock… Always within the week closest to my family celebrating Christmas! Well! I’d like to be able to fully enjoy my holiday season, and not have to spend it recovering from an exacerbation! I think I could probably handle a minor infection now, if it passed my way, but it still wouldn’t be without consequence and it’s something I want to avoid if at all possible. Family members have colds and sinus infections, but I have face masks! I joke about drawing hearts on them to make them more stylish. If Japan can do it, why can’t I?

So that Lyme flare got pretty bad. My muscles twitched constantly, and I soon started getting the internal tremor–the sensation that your entire body is vibrating, and that’s a Lyme symptom I haven’t had in a long while. I experienced severe muscle weakness in my legs for several days in a row and was wheelchair bound most of the time, even though using it was almost impossible. (I may or may not have mentioned, but I use a transport wheelchair instead of a normal self-propelled wheelchair. It doesn’t have wheels on the sides, so I self-propel with my legs, which are stronger than my arms because I don’t use them as much… That probably makes little sense, but when you have M.E., the muscles you don’t use very often are actually the strongest ones, and the ones you use the most become the weakest.) I remember starting to become concerned about it, but as the flare lifted, so did all the neurological quirks. A few days ago I went to the store without any assistance from mobility scooter or even a cane–a stark contrast to the previous week! My cognitive abilities have been poorer than usual, but these things go in cycles (every three weeks, remember?) so I may just be in a poor-brain stage. Since the flare though, I’ve had an increasing amount of headaches… I’m not sure if this is a three-weeks-of-headaches thing happening, or if it’s because of me not treating the Lyme, or what, but if it doesn’t lift after I begin specific Lyme treatment, I shall need to see a neurologist. Or perhaps I’ll just ask my LLMD next week when I speak to him, and see if he thinks I should go now…

It’ll be hard to decipher what is what, since I KNOW my headaches are going to explode once I start Tindamax next month. I told my primary doctor today about everything, and she’s excited about me starting it because of the recent in-vitro research that showed Tindamax kills up to 90% of both round (cyst) and normal (spirochete) forms of the Lyme bacteria. She also armed me with a new bottle of Lortab, so I’ll be ready for the insufferable headaches.

I have to write about a small bit of worry I have, though… On the 5th of December I got a severe headache, and that day I awoke with a bump on my finger. This is usually something I’ve associated with my bartonella flares, in the past… Then on the 10th, I got another bad headache, but I’m not sure if there’s any determinable pattern because that’s also the day I started M.E.-flaring from the trip to the store two days prior. :\ Could these finger bumps be Lyme, instead? And I HAVE been a tad more irritable, but again, nothing that screams bartonella at me… I’m just very wary of anything forming a pattern that would suggest it may not be disappearing afterall. I sincerely hope it’s just other factors. I’ll know as time passes whether or not things are being reliable enough to consider a threat.

Well, that’s all for my update right now, though I’m sure there’s more to be said. Oh, but I did update my picture on the right of the page. :)

Take care, my dears.

Keep going. No matter what you do, no matter how many times you screw up and think to yourself “there’s no point to carry on,” no matter how many people tell you that you can’t do it–keep going. Don’t quit. Don’t quit, because a month from now you’ll be that much closer to your goal than you are now. Yesterday you said tomrorow. Make today count.”

a rainbow at night