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

Alright, I caved.

I couldn’t take it anymore and started my Zoloft…even though it interacts with two things I take. I opted to just take it as far away from those as possible, and since I’m only on 12.5mg, it couldn’t be that bad, right?

Best decision I ever made.

And something interesting to share about my fatigue: It’s incredibly reduced! My wonky brain chemistry must have been contributing heavily to it, because after about five days I noticed I had a lot more energy. Antidepressants are actually recommended for “chronic fatigue,” and now I understand why! I thought fatigue was only a symptom of depression-related brain chemistry, but it would seem it’s just a symptom of off-kilter serotonin levels in general. My OCD is a lot better. The incessant thoughts are easing and I no longer need to keep hand lotion around from my constant soap use. :\

I take Flagyl Thursday thru Sunday, and usually by Saturday I am exhausted. This Saturday? I exercised. And by exercise I mean my usual stretching routine that I used to do for Fibromyalgia treatment. I got through it all! And the next day I stretched again, but at a reduced level. Today I took a break from it. I’ll see how I feel tomorrow. But I’m in shock that I was able to do that! It’s a very good sign. I’m elated that after five months in Lyme/Mycoplasma treatment, I am starting to get back to things I used to be able to do. I’ve been incredibly blessed to have my family’s support, emotionally and financially, but all I want is to be able to take care of myself again. At the rate I’m going, I think that will happen.

Neurologically, I’ve had a lot more numbness in my limbs. This is healing, right? I get the “hot foot” sensations daily, my feet itch like mad, and.. I remember an instance last week where a sharp, stabbing sensation went through my right leg to the bottom of my foot, and my leg immediately went numb. When the neuropathy was progressing, things got worse, and in new places; this is more akin to old problems flaring up with their last dying effort, so again, here’s hoping this is part of the healing process.

Headache wise, I’ve had what acts like a tension headache for about four days, now. It makes my teeth hurt. I say “acts like” because I never get tension headaches, and I’m not entirely sure if this is one, but based upon descriptions I’ve read… Then again I’ve also heard people describe Lyme headaches like this, so who knows. It could even be the Zoloft or it may be as simple as ibuprofen withdrawal after taking it for several months. Whatever the cause, hopefully it’ll go away, soon. It’s the least of my concerns! :)

a rainbow at night

I’m listening to the crickets chirp.

It’s one of my favourite things to do at night when it’s very quiet. Perhaps because it reminds me of the peace I had at my own home. I would listen to them every night as I fell asleep, the frogs and the crickets, and every morning I’d be awakened by birds chirping outside my window… Now I get that here, too. It’s one of the perks of summer. :)

 

The past week I decided to take a break from social media, Facebook and Twitter and the like. I still updated a little, but I couldn’t keep up with everyone else. I needed a social break. Also lately, in my social frenzy (I like people and interaction, I really do–don’t let the sick-person thing fool you), I realized I was starting to backslide into giving my very precious energy to people who don’t return that concern. It’s something with which I’ve struggled to maintain balance for years. I suppose, because for a small time I was able to be more social than usual, it caught me by surprise when that was no longer the case. I was reminded just where my energy was going–into relationships that were otherwise a one-way street, just me conversing with people who, for the most part, wouldn’t even bother to check on me if I suddenly disappeared. So I needed to back up and regroup, gather my thoughts and focus on what (and who) is important. It all helped.

And I made two great accomplishments this past week!

 

First, I walked inside a supermarket to do my grocery shopping and did not need any mobility assistance! Secondly, I ate a salad without the autonomic neuropathy screwing over its digestion and causing me severe pain later!

I’ve made several milestones this past year, as far as leaving the house. My first trip into an outside building using only my cane instead of being in my wheelchair–just standing up for those few minutes was amazing. My first minor trip inside a real store without needing a mobility scooter to do my shopping (though still earplugs, and sunglasses)–standing up on my own for more than a few minutes, amazing still. Now I’ve done my own grocery shopping, walking around completely on my own, for what must have been half an hour, with only earplugs. Another step in the right direction. :)

I wasn’t able to drive, or stand in the checkout lane, or put up any groceries, but I’m sure that will come later. The following three days (or, the past three days, I should say) have been spent recovering from that excursion. One with M.E. recovers by doing absolutely nothing. I was fortunate to not have too much of a neurological overload (probably because Lyme & co. are being beaten down?) so I was able to watch DVDs to pass much of the time. I went into rest-mode immediately after we returned, but the main start of the crash occurred roughly 24 hours later, very predictably with my legs. I took extra Co Q-10, and L-carnitine, and magnesium, and made sure I got enough protein, and maintained adequate hydration. After a decade with this disease I’m pretty used to coping with what inevitably occurs after so much activity: the muscle relapse and inability to be upright, from an overworked heart muscle and damaged mitochondria. Without all my supplemental intervention I would definitely NOT be at all functional, yet. But I’ve learned a few tricks or two! ;)

As for the salad, well… I love raw vegetables almost more than cooked ones, and I love fresh salads. But for the past several months, while my nerves have been trying to heal with the help of these antibiotics, I could not eat any raw vegetables (or anything high in fiber, for that matter) lest it trigger a neuropathic “episode” of my digestion basically.. stopping. My body would start to digest and then just.. stop. It’s incredibly painful, and something I’ve dealt with sporadically since first starting treatment to kill these infections, but which progressed pretty far before any substantial bug-eradication could be done. I’m not sure what the exact specific name for it is (I’m assuming something along the lines of gastroparesis, yes?) but it lasts for hours and I have to break out the caffeine to jump-start my nervous system and get things digesting my food again. :\ (Silly vagus nerve, either causing things to do too much or too little.) Needless to say I’ve been avoiding that horrible scenario… Until today. I thought enough time had passed to at least attempt some veggies. So I ate a salad…and everything went as normal! It was amazing. I’m hoping I can get back to my usual pre-neuropathic diet, or at least incorporate more of the things I truly enjoy eating.

 

As far as peripheral neuropathy goes: Much better! I can wear normal clothes again, for instance. And as far as the asthma flare up: My cough is now gone completely. :) My eyes have also been better, hence me being able to watch DVDs a lot. However, I did have a headache flare up last weekend, probably because I always get a flare up (Lyme or Mycoplasma, it’s anyone’s guess at this point) around the start of the month. I also had several days worth of migraine attacks (with horrendous postdrome) because I didn’t realize soon enough that something I was eating repeatedly had sucralose/Splenda in it. Erm… Some number of days ago I had a hive again. Any nick or cut I acquire refuses to clot for a long time, but with being on ibuprofen 2-3 times a day for the past two months, I guess that’s to be expected. My inflammation must be in a down phase, because I only have to take one ibuprofen per day right now. :) Probably because of the more-advanced anti-inflammatory (corticosteroid) I’ve had to take in the form of Dulera… Oh, and the urinaylsis came back normal, but we expected that much, right?

One thing I do wish I could start is my Zoloft, because my OCD is borderline raging recently, from so many months not taking anything for it. I am on so many prescriptions right now that I cannot bear the thought of adding something else. I have never been on so many prescriptions at once in my life! I’m trying to keep in mind that this is just a temporary thing, to help get me through this phase of treatment…

That’s all for now. It was nice to summarize my improvements for a change. :)

 

a rainbow at night

My Last Pill: An “I have overcome bartonella” post:

In the summer of 2008 I acquired an infection with the bacteria known as “bartonella,” which is transmitted by infected animals, biting flies, ticks, or–in my case–fleas. I would not be exaggerating to say it tried to kill me, infecting my entire body, particularly my heart and nervous system, putting me in a wheelchair, then bedbound, on supplemental oxygen, and very nearly having to be tube fed after being unable to eat.

Today, I finished treating it.

Like cancer, it is prone to relapse, and I don’t know if it will return one day. But in this present moment, I have conquered it. :)

a rainbow at night

Almost finished with bartonella treatment!!

I used to post much more often than this, I know, but… Things are somewhat monotonous! I don’t have to constantly be on top of symptoms every five to seven days to post updates as regularly. Or at least I don’t think I do… Last month, around the 5th, and then the 10th, I had the same symptoms as this month, around the 5th, and then the 10th… I’m not sure what that’s about.

The past few weeks I’ve still been antsy over my random symptoms. Flu-like, fever (99.5 on the 6th–probable Lyme?), severe headaches, neckaches, dizziness, legs going very weak/requiring wheelchair, POTS, poor mental state. All very possible Lyme symptoms! But this is my last chance to make sure there’s no reliable pattern before we stop the bartonella treatment. These are possibly my last few days on Rifampin, after being on it a year! I also don’t think I’d be able to tolerate a maintenance dose of my Bactrim (i.e., two single-strength tablets per day) plus the Minocycline and Tindamax I think he’s switching me to this week… But! I am comforted by the fact that Minocycline has bacteriostatic action against bartonella (and mycoplasma), so even if there are some remnants, they won’t be able to replicate! :)

At any rate, Lyme is being.. interesting. I have not have a headache for about a week! Which is very ironic, because they’d otherwise become daily events! (Also ironic is I didn’t have a headache the last time I posted!) I just don’t get the bartonella-related headache anymore, the ones that hurt in the front of your head like a sinus headache might. I have about half of the symptoms I had at this time last month. The inflammation is way down so I haven’t needed any ibuprofen. Severe fatigue for several days, weak legs, numbness in my legs, episodes of arthritis, an internal tremor all day yesterday… What has surprised me with its reoccurence is the sensation of a bruise on the back of my left ankle, just like last month! It’s not an actual bruise, I don’t think, because it just spontaneously happened while I was lying down, and then I was limping the rest of the night. It makes no sense, but it’s obviously something Lyme related. It’s like achilles tendonitis that only lasts one night, haha.

I don’t have the results of my thyroid ultrasound yet but the technician said I only had like three little cysts??? That’s very good!

I leave you with a quote from Ralph Marston. :)

“Frustration comes from focusing on what you cannot control.
Achievement, on the other hand, comes from focusing on all the useful and valuable things you can do.

Resentment comes from seeing yourself as a victim.
Effectiveness comes from stepping up and taking responsibility.

If you constantly complain that life is unfair, you’ll blind yourself to the best opportunities.
Yet by simply accepting that what’s done is done, you’ll find a way to make the most of it.

Don’t waste your time arguing and fighting with life.
Instead, invest your time and resources in inspiring and encouraging the best in yourself and in those around you.

There is good, positive, fulfilling value to be lived every day, in any situation.
Choose to be the person who shines a light on that potential value and who brings that value fully to life.

Let go of the frustration, resentment and despair by letting the positive possibilities fill your awareness.
Embrace and enjoy the immense power that comes from taking full, unconditional responsibility for all you are and all you experience.”

a rainbow at night