ARAN makes her first real post in months!

Something I try to do with this blog is make sure it makes sense and follows some semblance of “why yes I DO have a thought process,” but tending to either of those things is going to make this blog entry impossible, and I really need to write. So I’m sorry, people who like sentence structure and who like to translate my entries into their native tongue.

 

My birthday was in August. And it was incredible. Full of love from friends and family and the amazing gift that I was alive to enjoy it. I thanked my Lyme doctor for helping save my life, because without his aid I know I wouldn’t have made it. The whole celebration affair took two days to get through because I didn’t want to exhaust myself–I tried!–but let’s just say, next year I shall ask for more assistance, especially in opening gifts because I did the closest thing possible to arm-murder for someone with M.E. The eustress still affected me profoundly, and the muscle relapse I experienced took me weeks to recover from. By mid-September I did finally get to a place where I was okay enough to start typing, replying to e-mails, et cetera, albeit at a much-reduced level. I think that’s when I made my last entry… Anyway.

Since my last actual update I have been “officially” diagnosed with vasculitis, upped my Biaxin dose, and had to stop everything completely.

 

After a necessary car ride (read as: evacuation) put me in the sunlight for eight hours, my sporadically-present vasculitis-of-the-past-ten-years went into overdrive and has been bothering me daily, often severely, ever since. I have to avoid all sunlight and any temperature change…which I always have to do, but right now it’s even more important. I did get tests to see if anything autoimmune had been triggered, but the tests, ANA and the relatives, were all normal, so that’s good. I got the diagnosis of inflammatory vasculitis on the 6th of September, which ironically was two days after upping my Biaxin to twice daily instead of once daily, but the Biaxin was unrelated, since the problems began days earlier with all that sun exposure. My PCP told me all the weird quirks I’d been having–the INTENSE dizzy spells, the blurred vision, that the main vascular problems were in my hands and feet–were all related. She said it starts in the small blood vessels–ears, eyes, extremities–and spreads from there, and to manage it with ibuprofen, which for now, mostly works.

We want to avoid going on steroids if we can, because of how it suppresses the immune system… But I’ve been off and on Nasonex (an inhaled corticosteroid for sinus problems; I don’t have allergies) and it’s such a catch-22. I always feel better when I’m on it, but it also messes with my immune system so that other problems act up. Sigh.

 

For the most part I have been feeling GREAT with the twice daily Biaxin, but when I’m down, I’m really down. I have no idea what to say about my general health status, otherwise. :\ I always get a bad flare at the beginning of the month because this is one of the bug cycles (I think the Mycoplasma, but maybe the Lyme–I have no idea, I just know it’s not related to my menses because that has no reliable pattern, and hasn’t for years). Well, this month’s flare was absolutely terrible because of being on the doubled antibiotic dosage–”herxapalooza,” as one of my friends calls it.

When I was on Zithro (biaxin’s cousin), there would be one day a month I’d have to stop my antibiotics and let the herx die down, lest I end up it the emergency room. I came very close to going this month, not because of the herx itself, but because of a Migraine that was almost completely resistant to treatment. All I had at my house was off-brand medicine and name-brand Treximet, the latter of which  I cannot take with my type of migraine (which I DID NOT KNOW–need to discuss this with my new neuro!). So that was bad. Bad bad. The aura began with an awful episode of Alice in Wonderland Syndrome on Friday (Sept 28th) and the Migraine began Sunday (Sept 30th). Two days later, that was gone, but I have been sicker than sick ever since the whole thing started.

I have stopped ALL of my antibiotics in an attempt to recover, and I’m planning to resume them Monday if I’m able. If not, I’ll give it another week like I sometimes have to do. It’s been four straight months since having to take any kind of break, so that’s good. I hope it’s just the herxing (my liver is fine, by the way!), because this is a little frightening.

I haven’t needed my wheelchair in months, so I put it in the closet. Then yesterday I went to stand up and almost went to the floor. I’ve had NO trouble walking in months. Now my legs are very weak. It just hits me in “episodes”–one part of the day I’ll be sort-of okay; the rest, I am useless.  This would make sense if I were currently on antibiotics, but I am not. I have been sleeping a ton, and in bed all day regardless, only getting up for the essentials like restroom. And the pain… Oh, the pain. A day or two ago–they all blend together at the moment–I couldn’t so much as roll over in bed without vicodin. The headache phase (as that Migraine went on to irritate every surrounding nerve) has died down for the most part, but now I face exhaustion, flu-like sickness, numbness in my right leg leg and foot, a bizarre action-related tremor in my left hand/arm that has actually been progressing instead of going away… I am hydrated but my blood pressure is poor, I am resting but my heart is weak… My heart has felt weaker the past several weeks, at random. I don’t know what that’s about (side effect of doubled Biaxin?) but my next cardio appointment is in November.

It’s just such a drastic change, and I was doing perfectly fine (relatively speaking) on the doubled dose of antibiotics until this hit… And despite being off of them, it doesn’t appear to be getting better yet, which is concerning when I’ve literally spent the past week in bed and usually this combination lends to me feeling better… Or at least, when it’s M.E.-related, this lends to me feeling better. I suppose, with that in mind, I should stop thinking of it in those terms, because even though the majority of my troubles the past month-and-a-half have been M.E.-related and those ARE improved with rest, these problems I now face probably are not M.E.-related, and therefore there’s no sense in thinking rest will help them. Maybe I’m rushing things, or being impatient, I just wonder what happened that I’m taking so long to recover, and I hope this will all pass over without me being forced into a lower state of fucntioning in the mean time.

 

Three hours after I typed this I was able to come back and fix it up a little, so it’s not too bad… But yes, as to my absence…! I have been doing mostly okay, seemingly doing much better–even starting to prepare my own meals!–until “this” happened.

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

Random health development

Things are going well with crushed house/new house endeavor. So many miracles have occurred; I wish I could share them all with my few but dedicated readers, but this is, at its heart, my health blog, and so health rambles it shall be. I have some things to report that might be crucial to remember later on…

On the 3rd, while being outside with the EMS services and firefighters, I acquired innumerable fleabites. I happened to be on an antibiotic break because, in the days prior, I began to experience a severe worsening of my symptoms. A potentially-hospitalization-worthy worsening, accompanied by hives and the like: i.e., all the warning signs things were about to take a dark turn. The one-day-break I have to take about once a month didn’t work, so I began a week break, which did help a LOT. (During it, I was able to feel how much the antibiotics have helped me, and I look forward to the day when I can be on a maintenance dose that will allow me to enjoy that improvement.)

Several days after getting the flea bites, I woke up with a spotted rash all over my feet, just like the one I’d gotten when I acquired my first set of flea-borne infections in 2008 (that relapsed and remitted for the next two years). I also noticed the muscles in my legs hurt a lot. I immediately restarted the Zithro, and the next day, the Rifampin. The next day the pain disappeared, and within a few more days the rash began to as well, which is typical even if I’m not on antibiotics (at least from my previous experience with this rash). This is evidence of some infection, most likely rickettsial due to the nature of the spots, which includes possible ehrlichiosis. I assumed since I very promptly started treatment, with the best antibiotics possible, I wouldn’t require much more… (This, in addition to my several-year-old infection flaring up with spots on my legs and ankles right before all this happened, but I have high doubts to the new spots just being a flare exacerbated by pausing antibiotics–NONE of my other abx breaks have elicited such a reaction, and with the flea bites happening and all… Oh, right, I don’t think I even got to mention here that I’d been having spots on my ankles, did I? Well, I was, for about a month until it cumulated in the “I have to stop antibiotics or else” scenario.)

Today I have had a few spontaneous bouts of severe dizziness and for several hours today I also had a severe, throbbing headache in the back of my skull and my neck. These are both intermittent. I’m unsure if it’s to do with any new infection or the beginning-of-the-month flare up that I’m due for, but what made me get mildly concerned, is last night I looked on my stomach and noticed I have a macular rash. It’s mild, but… One of the things that has ruled out a lot of potential infections from those fleas is that I don’t have a macular rash on my torso. Or at least, I didn’t. Now it seems I do, which opens up a lot more possibilities to whatever I contracted.

Is it just the natural course of the infection that’s soon to disappear completely since I’m on the appropriate antibiotics? Is it a flare up of my bartonella quintana, which causes a macular rash on the torso? (I have had a lot of shin pain, actually, and my legs are weaker than usual, but I’m thrilled to report my neurological manifestations are less, at least for now–no more insanity/moodswings every five days!) Or did I, heaven forbid, contract B. quintana yet again from the fleas? Or are these symptoms just flaring because my immune system is distracted, fighting off whatever new bug I caught on the 3rd? (I’ve also had more of those “bumps” on my hands and fingers, which I’m unsure of their reason, but I’ve realized over the past year they appear as part of my flares.)

Time will tell. But I thought it fairly significant, and I wanted to jot it down while I had the opportunity. I’ll tag this post later.

a rainbow at night

Long overdue update, oops!

I want to say to my future self, when I look back at my health blog and notice this huge gap of no symptom charting: I AM SO SORRY. But I will do my best to recap the most important parts!

The last real post I made was of my new accomplishment of cooking myself breakfast, and taking a bath in the middle of the day. While I haven’t been cooking completely on my own, I have been helping with all my meal preparations. I have also taken a few half-baths during the day (and by that I mean, I often split it up into parts, since a full bath is too much expensure at once).

When I made that post, I made note to mention my improvement was mostly medication-induced, as I was nursing a headache… Little did I know I was in the beginnings of another one of those “two weeks of headaches” spells. It was exhausting having to be so medicated just to be able to tolerate the pain, but I had my last one a week ago, and haven’t had one since. There were all sorts of them! Some felt like slight migraines but they weren’t, it was just.. nerve irritation, much like what was happening to me before I ended up in the hospital in February, with all sorts of cranial nerve involvement.

On July 2nd (Saturday), I made a very brief private entry describring having a bad day:

Today has been a bad day. i’ve had momens where I thought I might just pass out while laying down. It started yesterday I guess, when I had one of those “episodes” …

During the two-week-headache-spell I had a lot of nerve inflammation. All neuropathies were flaring terribly, and I even had one “episode” so bad that I once again started shaking, which also hadn’t happened since back in February. I lived off of ibuprofen. It was a truly rough two weeks, which should explain my lack of updates! Simultaneously (and perhaps the cause), my so-called “vanishing” Lyme flare decided to show up for a rude visit (I jokingly say it was making up for June’s middle-of-the-month flare being so mild). The headache was included, yes, but with it I also had worse dystonia, nerve pain that (as I think I’ve been mentioning for several flares now) affected mostly my arms, more numbness in my face and on top of my head, and very much increased weakness. Of particular note is that the numbness that’s been happening with them feels more like a pinched nerve, but doesn’t actually appear to be one. Late night on June 29th, I privately wrote, “Nothing too significant to report, but for the past hour or so I’ve had increasing numbness in my left arm.” And then it began…

Well my Lyme flare seems to have started again, similarly, with more feelings of a pinched nerve in my arms. I am also experiencing leg weakness, facial grimacing, and dystonia. I haven’t walked for two days due to some combination of muscle pain and shin pain, in combination with the weakness. I’m continuously told the shin pain is bartonella, but is it?

Back in the same note I wrote on the 2nd (Saturday), I also mentioned that the muscles in my right leg were hurting… And I can’t help but realize that the same thing has been happening to me, again, for the past two days. I’ve noticed a strange pattern where every Friday and Saturday are bad days for me, for probably the past five weeks. This weekend wasn’t any exception…except for that I precipitated it and therefore took to rest, which definitely helped me get through it easier, lest I wouldn’t be typing right now! I’m not positive, but I think this weekly pattern might be bartonella related… I recently found out I most likely have two strains of bartonella, and possible erlichliosis or rickettsia, but more on that later.

On the 14th, I wrote of having a very unstable gait (the last day I walked, as of right now) and coughing, with several moments of spontaneous exhaustion. I also mentioned my arms getting weaker (a lot in part with me overdoing it on Wednesday, though), and that’s when the pinched nerve feeling began. I’ve also been very thirsty again, something akin to what happened to me back here; I also had the leg pain with that Lyme flare, so maybe it’s just a strange new Lyme symptom?

Soon, I’d like to make a post–perhaps a sticky post to tag to the top of my blog–as a reference for all information related to human bartonellosis. I think 75% of my search referrals are from people searching for information about this infection and its chronic symptoms. And having personal experience with it, I may as well compile what I know about it, for those who need it.

Next I shall write about the exciting results I got from my IGeneX testing!
a rainbow at night

As of June.

So, my menses began yesterday, and with it usually brings the resolution of my mental crises during months of PMDD. Of course I’m also on my Zoloft, so basically, I’m good now!

It’s amazing how much such a minute chemical imbalance can screw up everything else in your body.

Disorder Rating
Paranoid: Low
Schizoid: Low
Schizotypal: High
Antisocial: Low
Borderline: Low
Histrionic: Low
Narcissistic: Moderate
Avoidant: Moderate
Dependent: Low
Obsessive-Compulsive: High

Personality Disorder Test
Personality Disorder Information

(For the record, I do have OCD… I think I keep scoring moderate on Narcissism because I don’t like working with others, because I’m convinced they’ll mess it up, haha!)

My Lyme flare should be coming up… If the previous two months are anything to go by, I’ll be 95% bedbound and feeling nearly disconnected from my body from feeling so weak. I really hope that doesn’t happen this month, but if it does, I’ll pet (or stab) my new Lyme disease plush (that two friends bought me, aww!) and keep in mind that I only feel so bad because the buggers are dying. I’m experiencing worse arm weakness today, though I did use them a lot yesterday, I’m seeing a pattern: The middle of the month is worse for it. Which makes sense, since this symptom did get much more extreme when the infections came about. Today and tomorrow might also be a bartonella flare, which would explain me waking up with this terrible headache. I’m unsure, but if my last flare was Friday… If I’m insanely moody and/or start having muscle spasms, we’ll know.

Oh, and Monday we mailed off my bloodwork to IGeneX! In about two weeks I should have the results of that.

And that’s all for now, world! I hope you all are being the best you can, given whatever circumstances effect you.

a rainbow at night

Lyme flare right on schedule, it seems…

Yesterday wasn’t as extreme, indeed! I recall feeling very fatigued and dizzy, and having “random” upper spine pain (which may or may not have been contributing to my arm weakness). After three days of minimal usage, said arms are doing better. Last night I even had an online chat with a couple of friends. The first true conversation in a very long time. Another one of my “moments” that let me know treatment is doing something.

Not bad for a woman who tests negative on all the tests, hmm?

As I’ve noted here before, there seems to be some correlation between my arm numbness (top of the right one) and the presentation of a severe headache. The headache started late last night, but not in my head. My neck became very stiff and I didn’t get to sleep until hours after I’d originally lied down to do so. This morning the stiffness wasn’t as bad (we’re not talking arthritic or joint related stiffness, here) but later on today I began getting the tell-tale signs of the Lyme headache. Lortab and ibuprofen, as usual, and I’m okay now. On the day of my last post, before bed I spiked a fever of 99.2, but as for now, I have none, despite the symptom flare-up.

Oh…! And I’ve been coughing. It started on the day of my last post, that awful day. Things like this make me wonder where the mycoplasma pneumoniae is…

a rainbow at night

“And then this week happened”…

This is my attempt at being productive today.

I’ve been doing well. The improvement I’ve experienced has allowed me lots of new priveleges. But much like what happened at this exact time last month, the combination of hormone cycles and Lyme cycles have brought me from Still doing good to I’m still connected to my body, right?

My M.E. has been acting up after pushing myself to write and not waiting to recover. Actually, that was probably just the icing on the cake of a bunch of little things I’ve been doing lately, and not waiting to recover… Typing a little. Writing a little. Taking a bath. Things people are “supposed” to be able to do. I honestly just forgot what would happen, since I’m always so careful. I remember, now. :\

So yesterday I took a day of forced rest, particularly for my arms. I was on the border of paralysis, a point I haven’t been at in a very long time. The rest has helped, but it will take a bit more to regain pre-exertional strength. Yesterday I was literally almost bored! I wasn’t tired, and my brain wanted to do things, but.. well, you only realize how much use your arms, when you can’t use them anymore!

My muscles have also been twitching a lot. And I mean a LOT. I have several episodes a day (especially at night), every single day, where it used to only happen during my bartonella flares. I’m assuming this has to do with all my muscle usage, since the majority of the twtiches have been in my arms. My calcium/magnesium/potassium, etc., are all fine, I know it. We’ll see where this goes, but I’m still assuming/hoping it’s because of the increased usage.

My daily bursts of headache are less severe (though this may be subject to change with my Lyme flare approaching). I still require ibuprofen every other evening… My voice is not accustomed to being used this much, so it goes out easily by the evening, if I’ve spoken a lot. But! I have my dry erase board. :) It comes in handy, especially when I can only whisper.

As far as my brain goes… For whatever reason, I’ve noticed that my brain functioning appears to be worsening, even though I’m improving physically. I’m really not sure why. (Could it be that I’m still increasing my olive leaf dosage? I’ll be at my usual 500mg twice a day by the end of the month.) But, it’s noted, so we’ll see what happens.

Oh! And my appetite is wonderful; I’ve gained two pounds. :) It disappeared today, but that’s normal given what has occurred.

I woke up in a state of utter exhaustion and feeling as if I were missing something, or just.. as I’ve said many a time, just didn’t have enough of something. With my menses having started several days ago, I assume temporary anemia may be playing a role (as well as with my muscle weakness). I’ve been awake 8 hours, and I’m finally able to move around, and, obviously type a little. I do not feel sick, and I have no fever. But sitting up made my heart rate spike like it used to, and my circulation was rather poor. I’ve subsisted on electrolyte water, Ensure, and homemade fruit smoothies via my mother. I’m feeling better now, and I hope tomorrow won’t be so extreme!

a rainbow at night

Symptom recap, middle of Lyme week.

Let’s see. What do I need to update about… Ah, who am I kidding, this is going to be one big ramble!

I’ve been re-tagging my primary blog, the one that used to serve as my health diary until I decided to switch all those things to here and make it public instead of invite-only. That old one is still so useful to me. What’s even more useful are my daily symptom charts… But they are so taxing to fill out, I stopped doing them out after just one week on antibiotics. I used to be able to, but this time around it’s just impossible to keep up.

My intestines are no longer giving me any problem, so whatever was happening has resolved itself. I’m having daily air hunger ever since my Lyme flare started, and in fact, after skimming through my entire prior blog the past two weeks, I’ve realized my air hunger nearly always coincides with my Lyme flares (that may or may not be distinguishable from the mycoplasma pneumonia; I have yet to figure out if that infection has a pattern or not). Nonetheless I am in my typical Lyme week, and having air hunger. I am slighlty comforted by this, because it makes it less likely that this is happening because of babesiosis, something that I don’t think I have but won’t really know until we get rid of these other things. Also, I’ve realized repeatedly that oxygen does not help air hunger. It only makes it slightly less severe, but unlike for normal shortness/gasping of breath, it doesn’t truly relieve it. There must be some neurological component to it, I think, because my vagus nerve is also experiencing problems for the past several days. This happened in responsed to treatment last time as well.

For some reason Lyme disease have an affinity for the facial nerves (most commonly presented as bell’s palsy), I suspect because they are the closest connection to the brain, where the bacteria primarily reside. Except for the vagus nerve, that is, which not only goes from the brain to the face, but all the way to.. your stomach, I believe? It controls things such as heart rate, blood pressure, and gag reflex, and reacts to temperature changes. (Recall the term “vasovagal syncope”?) The last time I was in treatment I became unable to drink anything cold for three months–even water had to be heated to room temperature! And I was consistently nauseated for a very long time, which was only alleviated by an anticholinergic that happened to be used to treat a hyper vagus nerve. So now, something of that sort is happening again, and I’m unable to swallow a lot of my pills. There is a lot of synchrony involved in swallowing, and things just aren’t lining up. Either I just can’t initate the action, or I do manage to swallow but my throat spasms halfway through, or I for SOME reason try to BREATHE in the middle of it, which has forced me to hold my nose so that I don’t sporadically inhale! ‘Tis not been pleasant, to say the least.

My temperature made a spike to 99.6 on Thursday when I began taking my antibiotics at regular intervals (Rifampin 300mg + Doxycycline 100mg, both twice a day), and after that,  it went down to 98.9…where it has stayed ever since. Every now and again it’ll go to 99.2, and then drop back down to 98.9. Then maybe another slight jump, and back down. But it basically hasn’t changed: Before I go to bed it’s 98.9, when I wake up it’s 98.9, when I take it at random intervals, it’s 98.9. I’ve tried two thermometer and even asked my mother to be a control subject (98.2 for her), so it’s definitely something within me. It can’t be my menses because you still experience a normal temperature fluctuation, just with a higher baseline. I.. have no fluctuation, except for small spike after I take my antibiotics! But I’m almost a little glad about this because when your temperature lowers is when the bacteria can most-easily replicate. Maybe now that I’m on Doxycycline, whose (haha I speak as if it’s a person) entire purpose is to stop bacteria from replicating… Yeah.

I found out Rifampin can lower your Vitamin D levels, so I’m glad I take extra Vitamin D every day anyway. :|

…OH. Another thing bothering me more and more is food texture. Right now my diet subsists almost entirely of whole grains, raw fruit and vegetables, eggs, and Ensure drinks. Occasionally I eat chicken.

All things considered I think I’m dealing pretty well being on both antibiotics… Ah, well, of course I have excruitating headaches come nightfall (Lortab-requiring) but that’s a given. Headaches are my most prominent infection symptom and my most prominent herx reaction. I’m not having as much blatant dystonia lately as I am more parkinsonism symptoms. (I qualify so closely for a diagnosis of a “dystonia plus syndrome” I’ve actually considered getting evaluated by a movement disorder specialist to see if I’m showing signs of anything genetic; my dystonia first appeared in my left foot about four or five years ago.) But yes, recently there is more trouble with tremors, difficult initating and stopping movement, freezing movements, slow movements. Again, my facial spasms have died down. I still have the head shaking, but not as severe. I’m currently trying to determine whether it’s my neck or if I’m having nystagmus, which is where your eyes move and your head shakes to compensate. I know my left eye dances and has a mind of its own, especially during Lyme flares… So that may be it. Whatever the origin, it’s not as severe. My feet are beginning to hurt again… Is it time for a bartonella flare soon?

Speaking of which, I’m concerned for the end of this month again. Maybe not this next one, but the one after it, the dreaded “bartonella flare after the Lyme flare” that’s been repeatedly responsible for trying to hospitalize me. I’m only concerned because the chance of it happening becomes more frequent when I have stabbing lung pains (I’ve had pleurisy twice in the past eight months) and air hunger in the week prior… Both of which I’ve had this week. I’ve previously speculated that the mycoplasma might have something to do with it, too, since this happens every other month and mycoplasma replicate very slowly… But we’ll see. I haven’t been coughing yet–… Oh, wait. Yes, I have been, a lot… Ah, crap. :|

Well, hoping this is all just herxing and nothing akin to an ominous sign…! (If I start having random allergies and chest pain, then I’ll begin to worry.)

Oh, but speaking of headaches (which was a couple of paragraphs ago I think), since I’ve needed Lortabs nightly and had no arm numbness, I think that kills the medication-reaction theory about my arms randomly going numb.

My legs have been weak, but again, Lyme, so there’s nothing too unusual there; just need to mention it. I’m having arrhythmias as well but after repeatedly mentioning it during Lyme flares, I think it’s the cause of those, too…

And this concludes my recap of the symptoms I’m currently experiencing. :)

a rainbow at night

I didn’t forget

My my, journal, I’m sorry for abandoning you. I have been sicker than sick lately, with one day of goodness that I used to leave the house with the help of my mother and do some grocery collecting.

It’s obviously too late to report specific symptoms, but in general… Well, my memory and brain function are fairly poor. Today I had my first dissociative incident. I’m hungry again, which is a good sign, so I eat (or drink Ensure) more frequently. I’m out of my wheelchair more, which is another good sign. No problems at all with any yeasts, candida or otherwise. But I’ve been mostly consumed by dizziness, nausea, headaches, and a feeling like my body is just shutting down. I’m sure it’s really not, or else i’d just continue to get worse instead of having moments of reprieve, but for the past several days this has been what it’s felt like. I”m exhausted, going into states of being half-asleep several times a day with no warning. I halfway wonder if they’re seizures. The dysautonomia has also been bad because I’m having terrible trouble with bloodflow and subsequently being unable to move; it takes all my willpower to move my hands and/or feet to keep circulation.

Yesterday was a bad bartonella day. My Lyme flare came a couple of days early as far as date-wise, and wasn’t too terrible (or at least, not that I can remember). The left side of my face is becoming.. more “involved.” Today my breathing muscles became involved in my weakness again; my legs also stopped working due to muscle issues. Mum had one moment of having to make sure I was still breathing… The latter part of today has been a small bit better, at least enough to attempt an entry.

There’s so much more I would say, but I can’t. I have neither the words, descriptions, nor available muscle energy to make that happen. I had some friends come to stay here, and they saw me for a few minutes in the process. It wasn’t much and I think that’s probaby for the best. Another friend my mother saw up in town asked if they could come drop by and see me soon. Another friend knitted me something since I love tea so much, and I just got it in the mail today… This support means so much, especially during my ‘moments’ when the infections try to make me think no one cares if I’m here or not.

I know this is vague and confusing and probably won’t even be useful to myself later (whcih is the main resaon I have this blog), but… It is what it is.

This is me trying to make a post… A make-up post!

Ahhh I’m sorry, I really have been around (i.e., on the computer), but I’m only capable of throwing out whatever words are currently floating around in my brain. My symptom chart consists of one-word descriptions, you know, and a blog entry… Well. That takes more. But I figure I’ll just wing it.

Let’s see… This is day six on the Rifampin. Good news is, I’m herxing! The bad news is, well, I’m herxing. It’s not comfortable but at least I had an idea of what might happen. It’s made things easier, and of course there are always pills… I also decided to STAY ON my Zoloft for the off-chance that it might actually help. I’m not sure if it has. On my “bad” days I just alternate between exceptionally-stable to exceptionally-unstable. Aha.

The most profound thing has been that 30-60 minutes after my antibiotic dose, I can no longer walk. This is a bit different from my usual wheelchair-dependent state where I can at least walk a few feet and sit down on the couch, and use the chair to help me get back or whathaveyou. This is more along the lines of, I must wheel myself to the door of the restroom, and I’m afraid I may fall during the short “dash” inside, even while I’m holding on to things. (My transport chair may be small and maneuverable but it’s near-impossible to fit through that particular doorway; grr.) So I’m effectively wheelchair-bound for the twelve hours following antibiotic administration. Late at night my ability to stand for a couple of minutes at a time gradually returns.

Other things that happen after my dose are:

  • A few hours later, I get tremors and various types of uncontrolled neurological happenings: Sometimes the dystonia becomes worse, sometimes my muscles will twitch everywhere, sometimes even my Tourette’s starts to act up.
  • About six hours later, the head pain starts. It’s like a throbbing-brain sensation and my eyes are very much affected. A few nights I’ve gotten through it, the others required Lortab and ibuprofen.
  • Both of these things also happened on the Doxycycline, but at a much more extreme degree.

Need I say more about how glad I am that we took the “get the bart levels down first” route?

As to be expected, my moods have been more volatile. I’ve noticed when I wake up, I am very snappy and irritable and that.. is not like me at all. (Despite waking up feeling sick, I’m honestly not one of those people who wake up in a bad mood.) I’m dealing pretty well with those sorts of things, though! A couple of times I’ve suddenly told friends “I’ll talk later” to avoid yelling or snapping at them for no reason, but the fact that I’ve had enough awareness to do that, is great. :)

I haven’t gotten much depersonalization yet, but the derealization is getting more frequent and I.. wow, I hate that so much. It’s like you’re dreaming and you can’t wake up; you can’t understand why anyone is saying the things they are; you don’t understand why you’re doing any activity… Luckily, like the moods, it comes in “episodes” and I haven’t had a full day of it. (This is how the bart usually acts, anyway–relatively short “episodes” of altered mental status in comparison to just waking up and being in a daze all the time–so I guess it makes sense that the herxing is like that, as well.)

Other things that have happened are.. well, I really need to make it a point to say, again, that my legs are ridiculously more weak than my arms! That baffles me. I guess because I’m used to thinking of my weakness in M.E.-terms, which is more akin to someone who has Myasthenia Gravis: Whatever you use the most will be affected the most, and your actions are directly related to your muscle function. But with this, that doesn’t matter. Basically I’m just not used to having weakness that isn’t relative to something I’ve done. And while the majority of my leg weakness has previously been neurological, this weakness affects my muscles, as well. So it’s just something new to cope with… I think I’m doing fine with it, though. The first couple of days I went to get up to shuffle to the restroom and nearly went to the floor (ha!), but I’m pleased to announce I remember that my legs aren’t completely functional, now! (I can’t help but laugh; really, how do you forget something like that?) And if I recall, the weakness was a part of my last herxing, so, right.

That said–and coupled with the long break I took from the computer the week before–I’m able to type a lot more recently. :) Which is very “convenient” (i.e., a blessing), because I’ve obviously been spending more time online. Usually, I go sit on the couch for half an hour per day, collectively. I also make at least one trip to my mother’s room at the other side of the house. I’m adventurous like that, you know. For right now those things don’t happen, though I am able to wheel through the house a few times per day, if only to say hi to everyone, see my puppy, and “get some air.” I opened the front door today, and felt the outdoors, and it was nice. But because of the new fatigue and types of weakness, it’s more or less in my best interest to just stay in one spot and not move that often. Lest I anger the headache gods, or upset whatever semblance of normal my blood pressure has maintained.

Another thing I’ve felt recently: Sick. Not really “you have a neurological disease” sick, but “you have an infection and now your body is trying to kill it” sick. You know the feeling: Fever, feeling “clammy,” bouts of dizziness and motion sickness, joint pains and sore muscles, attacks of nausea. Just general sick. Nothing new, but for the sake of mentioning it…

Today I woke up mildly dehydrated, but–and here’s the kicker–NOT to the point of requiring immediate intervention! :) That’s a great thing. I’m in Lyme flare mode right now, so perhaps that’s why I woke up like that. My cognition is poor (but never underestimate the power of the ramble!), my neck is stiff and hurting,  I’m having palpitations (though because of the Lyme, the mild dehydration, or both, I’m unsure), my arms have been going intermittently numb, and yesterday I actually woke up with some more-difficult-than-normal arm weakness. The POTS symptoms are a little angry, but again, dehydration is not my friend.

Well then! Right now my vision is rather blurry so that’s probably my cue to end this entry. I think that about covers everything. :)

a rainbow at night