Mini update, post-hive.

…Well, I have been coughing a lot, and I am very weak, but whether or not that’s because of spontaneous-flare, who knows!

I’m effectively bedbound again. I very nearly was yesterday, too, but I didn’t seem to get the memo that standing was very bad until almost passing out after answering the door. My heart pretty much said that was the last straw: You are going to lie down, or else.

So yes, my heart feels weak, and that’s my main problem. I’m more or less very stable as long as I’m in bed, slightly propped up. But anything else is met with a pain in my neck and an inability to breathe. I tried wheelchair-ing but that still causes those issues, so I’m only using it to get to the restroom. I’m also craving certain foods so I might be experiencing anemia, which would definitely not help. I do get anemic with flares so that would make sense… Hmm.

But as long as I’m lying down I am not in any other discomfort, which is nice. No nausea, no headache, no dizzyness, no palpitations, no dystonia… The most I have going on is minor nerve pain and brain fog, which is none too bothersome. My nervous system appears to be responding normally to things today, as well; and if it starts to act out, I have a cup of coffee next to me to take a few sips.

I have been listening to the pouring rain for about an hour and it is just magical.

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

Letting go of society’s expectations, symptom recaps, and improvement with bartonella.

Despite the fact that my brain has been functioning a lot better recently, I haven’t much felt like updating. Completely the opposite of several weeks back, when I couldn’t think to save my soul but desperately had things to say! I’m learning a new language, so most of my spare brain energy has been going into that. It will also help me decide if I may be able to attempt finishing my degree come next August. If I cannot, however, I think I’d be okay with just letting it go. Afterall, I do have at least one degree–even if it’s not what I set out for–and my health is too precious to waste on going to university to finish a degree I may never be able to use, and which may worsen me trying to complete.
I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. If I do reach the point where I am finally stable, then I would love to try and finish and become a researcher, or at the very least, a counselor. But that would take a lot of trust in the fact that I’d still be stable and healthy enough to actually do those things after my degree was finished. If I never again become that well, wouldn’t it be better to attempt some type of small job with the degree I already have, than use up everything I’ve gained in pursuit of something that won’t do me any good? But even that would require more health than making sure I don’t starve on my own. If I only improve enough to take care of my basic needs, I will be thankful.

Illness has taught me my worth is not defined by how much money I make, or what level of degree I have, or what job I have (if any, if ever). I am worthy because I am here, because I exist.

Randomly: I’ve gotten several followers the past few weeks from all over the world–oh, the power of the internet is amazing!

Okay, let’s see. From the 16th-23rd I was having a typical Lyme flare… How is it possible that this pattern hasn’t changed, practically since the time I got it? Is it really THAT predictable? But yes, severe headache and neuropathy issues, and I also recall being more cognitively impaired during then, as well as thirsty–again, all typical. What’s not-so-typical is that I’ve had nasal allergies the past week. I can’t tell if it’s eosinophilia related (hopefully not) or something I’m exposed to in my environment. It’s not like I go outside or even open the windows lately, with it being so cold, but either way, since I’m not allergic to anything except chamomile, this is puzzling! I’m definitely reacting to something–I just don’t know if it’s internal or external. I have Astelin, until I figure out what’s going on.

I felt it’d be okay to restart my stretching routine a couple weeks ago, so every other day I get some exercise! No relapse, yet. I’ve been able to cook a lot lately, also, which is encouraging. It’s still difficult and frustrating because of my muscles and their tendency to fail the day after using them, but hopefully that will improve more soon. If it got worse when I got these infections, surely it will improve as I continue to treat them.

Dare I say that the bartonella eradication is going as planned? The Bactrim is amazing, and I think the bart is.. well, it might be gone, or at least, finally beat into submission?! The protocol is to continue treatment two months past the cessation of symptoms, and I talk to my Lyme specialist next month, so we’ll see what he says. Then I can start Tindamax to finally treat the Lyme! The antibiotics I’m on now treat it, but only very minorly–just enough to keep it from taking over. I’ll be stopping the Rifampin since I can’t take it with Tindamax, but I may stay on a maintanence dose of the Bactrim, since bartonella has a crazy-high rate of relapse, and I do not want to go through this again. I feel I’m probably being unrealistic that I should never face it again, with the way my immune system is, but… For now I’d really like to enjoy my improvement.

Three days ago I started my Zoloft to ward off PMDD and control any outstanding OCD symptoms. I don’t think I was having PMDD yet, but since I was supposed to have taken it again in September, it’s bound to show up soon. My OCD has been flaring and I’ve been hungry all the time, so I know some brain chemicals were out of alignment. I last took it in June, I think, and it was by far too late then!

The past three weeks I’ve had this odd collection of symptoms that fit the description of pelvic floor dysfunction–not saying I have that, but symptom wise, that’s what’s going on. All of my muscles there would randomly tense and were very uncoordinated, no doubt the result of nervous system disruption. :\ I have gotten this on and off over the years, for a day or two at a time, but never three weeks. It’s mostly gone away now. My menses started two days ago so they’re somewhat on schedule again, with every 45 days being my usual. However, if things continue to be.. bizarre, I may see myself going to yet another doctor, so it’s worth keeping track of, yes? I’ve been slightly anemic even before this, and yesterday I had the most random craving for crushed ice (a further sign), so it’s probably no wonder I have been beyond exhausted and out of breath with every move I make. (Anyone else start singing The Police just then? No? Okay.)

A recent study found a correlation between high doses of Vitamin C and a reduction in the rate/increase of heart failure symptoms. Granted it’s just a correlation, but now I feel even greater about taking two tablets per day since last year!

Til next time

a rainbow at night

Cardiologist appointment… Oh, and other things.

That day started with some relief–my menses had resumed. Which, honestly, I wouldn’t care if they never came back, but if they didn’t that would just mean more doctor visits to rule out things like cancer, and I’d rather not, thank you. I did set a new record, though, with how long they’ve disappeared at one time–nine weeks!

When I got there he started by asking how I was feeling since last time. I said “good” and he said I looked well. I was very pleased to show him I was out of the wheelchair.  Then the results came.

So, I still have the valve regurgitation. (I do not have mitral valve prolapse, just to be clear.) The primary issue is mitral regurgitation; I also have pulmonic and triscuspid regurgitation, but they’re always “trace to mild” and haven’t changed in two years. The other thing is that my heart function was decreased. He said it was at the lowest end of the spectrum to still be considered normal; my left ventricular function measured as “low normal.” I’ve always been over the base 55%, but this time it was at 55%, so he wants to watch it. I apparently have a new heart murmur in the mitral valve. (Perhaps this happened after the recent flea incident, during those three weeks I had chest pain and worsened symptoms of the regurgitation?) Oh, and I had wheezing in my lungs, no doubt the result of whatever caused me to be coughing those three weeks. By the time I got to the visit (on the 25th), my cough had stopped, though. He said I can expect a worsening of all this when going through things like infections and physical stressors.

He asked if I had any symptoms such as swelling in my feet or ankles, shortness of breath, fast heart beat, coughing, and frequent urination, specifically waking in the middle of the night to urinate. My answer was yes to everything; he didn’t mention that these are all symptoms of heart failure, but it’s me, and of course I know that. All of these things will happen if I’m not careful, but with my adapations I’m usually able to avoid them, which he suggested I continued doing. I told him about having a lot of trouble breathing when I lie down, which he noted, and said to come back sooner than our scheduled 6 month check up if it starts waking me up at night. He strangly also asked if I had nausea, so that must have some related thing, as well? I spontaneously get nausea for any number of reasons, but, doesn’t everyone?

Then we talked about my arrhythimias–they are there, but just didn’t occur very frequently! (If you recall, my symptoms had actually started to resolve by the time I wore the event moniter, ahaha.) Which makes more sense to me than the previous declaration of “it was just tachycardia.” He actually took the time to explain and show me the event monitor results sheet, and point out where the beats were messed up. Many times, the sheet said something to the effect of not being able to show the abnormality because of the heartbeat was too fast? How is that even possible? Anyway.

He just wants to monitor me, I guess to see at what rate things will progress. There’s not much that can really be done right now, besides what I already do. I take Co Q-10 daily, of course, and L-carnitine, for my muscles, so I hope things will delay themselves for as long as possible.

Now, what I didn’t mention to him, is that the hearts of people with M.E. have decreased cardiac output the day after exertion. It’s one of the few ways you can actually prove our disability: We are in heart failure the day after we exert. If I had thoroughly exhausted myself the day before the test, I could have SHOCKED this poor man with how much it could fail! But, I couldn’t mention it at the risk of him then disregarding the decrease and not wanting further followup, as I’m not about to just assume–as incredibly likely as it is–that’s all it was. I had a doctor visit the day before I did the echocardiogram. Hopefully that’s all it was, but. For the next test, should I rest up the day before to see how I fair on a “normal” day? Or let loose and allow people to actually SEE what my muscles do after exertion?

Other than that, I got the results of my bloodwork and yes, my eosinophils are indeed elevated again. But good news is, I haven’t had any more random hives or allergy symptoms, so hopefully they’re on the decrease now that I’ve got the Bactrim.  I’m also anemic again (hemolytic) which, coupled with the eosinophilia, is exactly what my bloodwork looked like when I got the fleabites the first time. So it makes sense, and hopefully things will even out. My cardiologist said at least there wasn’t a raging infection that would put me in imminent, immediate danger. My white cell count was good! In the 30s! It used to stay in the 20s for several years, but lately it’s been pretty stable, and that’s good. :)

I’ll explain why I was suddenly able to type all of this, in a new post! But basically: Bloodwork reflects hopefully-resolving infection, fleas did a number on me but I’m okay, and as usual, we’ll monitor my heart problems, which are minor as long as I stay within my limits.

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

Checking for B12

I meant to post this yesterday:

Headaches headaches headaches. I don’t know how people deal with these with only Tylenol and the like… They’re terrible. My neck also hurts. Well, hurt. It was spasming as well, but I’m comfortable now.

I had another “episode” earlier that went away after nature called… What an odd problem I have to explain to this new neurologist, hmm? And about whether to mark the CFS box on the forms, I decided… I’d leave it blank! Ha! I did mention the history of fibromyalgia and wrote on the side that it “went away.”

Oh! And at some point today a friend had me explaining various types of anemia, which brought up the topic of pernicious anemia… Which made me think of a long time ago, my B12 levels were randomly low. Subsequent testing showed them to be normal again, but with all the problems I’ve had lately (especially with nutrient absorbtion, if my calcium and potassium levels are anything to go by), I feel it’d be a good idea to get them retested, since B12 deficiency would definitely contribute to a lot of my problems. Anything to make this go easier, I’ll take it! My mother was B12 deficient for years, even, so I might have an increased risk of it.

Otherwise, great news! My calcium levels are back up, my potassium is back up, I’m no longer anemic, my lymphocytes are back down, (my eosinophils are higher but that’s to be expected right now), and my liver function is back to normal! These are all great things, particularly the latter because it means I don’t require any extended breaks from the antibiotics.

But I forgot to actually post! The first part of today has been very rough. A lot of numbness and tingling in my extremities, feeling very internally weak and generally.. well, weak. My face and tongue began to go numb when I began digesting, as “usual.” (I really hope this bizarre phenomenon is temporary!) I did have vinegar by accident today (I forgot…) but no migraines yet. Last night sleeping was difficult because I kept waking up interchangeably freezing and burning up. But you know, in general, I can feel improvement. I haven’t needed my oxygen since February, even! That’s an entire month without it! I might be able to give it back if I can get through another month oxygen-free! :D And I’ve been walking around a lot more! This evening I’m feeling a bit better, but I usually start to come around by nightfall.

I’ve recorded at least four events on the holter monitor that was set up on Friday evening. With my next Lyme flare approaching fairly soon (the end of the last one was around the 21-22nd), I should get lots of chances to document these abnormal cardiac events. The ones that will go away with treatment like they did last time…but at least they’ll be documented?

a rainbow at night

Three ER visits, and a hospital stay: What happened.

In case anyone was wondering why I haven’t been around, it’s because I’ve been in the hospital. If you’re on my Facebook or Twitter then you already know this. I went to ER three times in less than 24 hours, so they eventually kept me. I was there from Sunday night (Feb 27th) to Friday (Mar 4th) from these “episodes” that acted like seizures, but weren’t. The antibiotics didn’t technically cause it, i.e. it wasn’t an adverse reaction, but the medicine killing the bacteria definitely woke something up, so everything entered into a sort of revolt and my body–particularly my nervous system–could not cope. I talked to my LLMD from the hospital, and he told me to stop all Rifampin and Doxy for two weeks, only using the Doxy to avoid another emergency room trip. (You cannot stop bartonella treatment “cold turkey” because THAT can land you in the hospital, as it has for me in the past.)

My body has been fighting a lot of things these past two weeks. In addition to what I already had, my labs suggested an unidentified virus lurking, for which I can do nothing right now; I’m anemic because of the infections that I can’t treat; my blood sugar has been high (because of stress reaction I think);  and I haven’t been absorbing proper nutrition OR essential vitamins, yet I’ve also been unable to handle my nutritional shakes, so it seems inevitable that I will lose more weight. When everything else went south, my liver decided it couldn’t deal with my antibiotics, either. However my body also cannot cope withOUT the antibiotics either, since bartonella comes back with a fierce vengence in a very small amount of time, so I may very likely end up in the hospital this weekend if things take a wrong turn. All I can do is pulse the Doxy on Saturday and Sunday, and hope for the best. I’ve officially run into a treatment failure, despite us being so careful to avoid it. I’ve been very, very ill and unable to handle ANY of my medicine, even my herbs. Things got.. pretty bad.

You know, I really should be more specific in my prayers. Like, instead of asking to “make it to Saturday” without an ER visit, I probably should have extended that to the whole weekend! Because leave it to me to feel in the clear on Saturday, and then end up in the hospital on Sunday!

I guess it all started Saturday evening/night, February 26th. I watched a lot of TV, including two movies without pause, which doesn’t sound like much, but for someone with M.E., watching four-five hours of straight television and actually paying attention? That’s a lot of energy. Too bad it doesn’t affect me then and there. It was fun, and worth it, but I should have rested after that. I didn’t.

So the next day a lot of bad things came together:

  1. The relapse from the previous night began hitting me.
  2. Doxycycline takes 10 days to build up to its highest levels in your nervous system, and it was day ten.
  3. I had a small argument with my mother which stressed me out further and I am not supposed to get stressed out.
  4. I overexerted further: I just wanted to lie down in the living room and watch two movies with my family… I didn’t think it’d get me as sick as it did.

So by 7pm Sunday, I was sick as a dog (why do people say that?), herxing severely, having a Migraine, and I guess my nervous system just.. had enough. I had been having severe tremors all day, but then my muscles began spasming and going numb interchangeably. I went to my mother’s room for safety. She looked at me and immediately started making a list of my current medications for the hospital staff. (Mother-premonition?) I then proceeded to have this seizure-like episode of my limbs going numb, my tongue going numb, an inability to swallow (though I could breathe all right), and uncontrollable convulsions. My stomach felt this “rising” sensation and my speech was slurred whenever I did try to talk. This happened three times between Sunday night and Monday evening, so by the third ambulance trip, and me failing the Pronator Drift test (a neuro test, indicating a upper motor neuron lesion) they kept me.

“It” proceeded to happen again that night, twice on Tuesday, and once on Wednesday. I was discharged from the hospital Friday morning (4th) and I had a minor attack that evening. Then another minor attack on Monday, and one on Tuesday (the 8th). They were getting less severe and.. more Migraine-like than seizure-like, but then I had another bad attack two days ago on Wednesday, complete with a few minutes of convulsions. :\ But for the most part, instead of full-on convulsions I get some muscle twitching, and the “main event” is now a tingling sensation in my stomach and chest, abrupt numbness of my arms, neck, face, jaw, tongue, all mostly on the right side, and sudden slurred speech. (I still suspect some nerve around there is really messed up, perhaps that vagus nerve that has been giving me so much trouble recently.)

There are some very odd happenings that make it nearly impossible to find the true cause. I’m not sure there is just one, really. The first time it happened after drinking an Ensure; the second after taking Rifampin; the third after eating a hamburger; the fourth after eating again; the fifth after an Ensure; the sixth-thru-whatever numbers were correlated with either Ensure drinks or Migraines. In fact I’ve had a Migraine on.. Sunday (Feb 27th), Tuesday, Thursday, Tuesday (Mar 8th), and yesterday. Also, during the first three episodes, I really, really had to pee before it happened. Like, an abnormal amount, but I wasn’t drinking that much, so it didn’t make any sense. Nothing makes any sense, besides my nervous system just went into some type of overload/failure. I’m sure the exertion worsened it, as did the antibiotics/herxing, and for a time I developed the same sensitivity to Ensure as I have to daily multivitamins. I cannot take vitamins because they cause this unusual, terrible reaction where I become in a paralytic-like state for about 8 hours. And because of the number of times this happened shortly after drinking an Ensure–even though I’ve been drinking them for weeks and it helped me stop losing weight–it looks like I’m having a similar reaction to the nutrition in them, after a certain point. But why it happened after I ate? I have no idea. And why did I have to pee so badly before them? What the hell?

I’ve had intermittent arm numbness since I started antibiotics, which I’ve mentioned on here repeatedly. (And oddly enough, it was in conjuction or following severe headaches, remember? They didn’t seem like Migraines at the time, but now, I wonder…) So the antibiotics woke something up, I guess. And I also mentioned here, I’ve had increasing trouble swallowing for the past four weeks, which made it impossible to eat a lot of things. It cumulated into a full inability to initiate swallowing last Tuesday, and it was pretty scary for a while. I didn’t want to end up with a feeding tube. :( Other things of possible note are my more frequent arrhythmias and tachycardia, which annoyingly never happened during any of the three times they checked my heart rhythms! But they did run a LOT of tests of me, over twenty-five. Included was an EEG, and the results would insinuate I’m not having seizures, but the sad part is, you can still have seizures and have a normal test result. :\ So. Yeah. They ultimately found:

  • I have a rotated kidney! This has been present since birth and poses me no problem.
  • I now have moderate mitral regurgitation in my heart.
  • A spot on my brain, which made me very, very angry.

Because I’ve had three MRIs in the past two years. Three MRIs. I’ve had this lesion in my brain during the last THREE scans of my brain, and no one said anything about it! It wasn’t on my 2003 MRI, but it’s been there since at least 2009, and has gotten “minimally more prominent.” I got Lyme in 2006, and both Bartonella and Mycoplasma in 2008 (when my neuro symptoms really took off) so my best assumption is, they did it.

But speaking of brains, they had me see a shrink to make sure I wasn’t just causing these problems out of anxiety. And I can’t really blame them–my doctor mainly wanted to make sure anxiety wasn’t worsening my problems–because truly my symptoms were very anxiety-like; if I didn’t know me, I would have made the same assumption. But as you can imagine, the results of that were, “She’s sane,” which is the SECOND time I’ve had to see a psychologist to prove to my doctors I’m not just a stressed out female… So maybe now they’ll leave that alone?! An interesting fact, though: The psychologist knew what Rifampin was because he has two other patients who have been off and on antibiotics for Lyme and coinfections. You know, in this state where I live, where Lyme supposedly doesn’t exist? Just like the two patients my infectious disease doctor treated here? Yeah…

The area of my brain with the lesion is the Pons, which is part of the Brain Stem. All of your brain is important but that.. is.. very important. It’s the part that allows communication between the your brain and spinal cord, i.e., any signal your body gets or receives has to pass through it. Wiki says the Pons is about 2.5cm in length, so the fact that this “spot” I have is 1cm itself… A little frightening, that. It could have been caused by a particularly bad Migraine, but.. then why is it getting any bigger at all? Or if it’s demyelination caused by an infection, it’ll just be there forever. If it’s actually a Lyme cyst, it could disappear with antibiotic treatment, because it’s not nerve damage as much as it is a bundle of bacteria that appears as a lesion on an MRI. The worse case scenario is that these infections have triggered multiple sclerosis (MS), which Lyme, Bartonella, and Mycoplasma pneumoniae are all capable of doing. And truth be told, the spot is more MS-like than Lyme-like. But. That scenario seems less likely, because MS doesn’t improve on antibiotics; I did.

As for the valve regurgitation… Well, I guess I expected as much. MVR generally gets worse over time, so it’s a little scary that it went from mild to moderate in just a year and a half, but… I guess when you look at what’s currently happening, and also with me being unable to treat the bartonella for almost a year (bartonella really likes the heart), it’s not that shocking. As if having M.E. wasn’t enough of a predisposition to heart failure, this does not help.

I’ve been working on this entry since Tuesday, so maybe in another few days (hopefully sooner!) I’ll try to make a post about what’s happening now. Until then, wish me luck with my antibiotic pulse, that it’s enough to keep me from the ER! I’m sure they’re very sick of me by now!

a rainbow at night

[Note, Nov 17, 2011: Further developments as to what happened can be found in subsequent posts, or by clicking the "pings" (posts where I referenced this one) below. These attacks were eventually proven to be neuropathy of my vagus nerve.]

Ice pick headache…that keeps on going?

On Tuesday I left the house for the first time in two weeks. It was great. I got my hair cut. :) But as is usual, I got a horrific headache that night… Possibly the strangest, worst, and most sudden I’ve had in a while, actually.

Around midnight I got up for the bathroom, came back, and somehow within that span of two minutes I now felt like someone had stabbed an ice pick into the front of my skull, between my eyes (but the left one primary hurt). I started shaking, rocking back and forth, and clawing at my face. Oh, goodness, it hurt… The mere twenty minutes waiting for the medicine to start working seemed like hours. And I still don’t know why it happened?!

Turns out there actually is a kind of headache termed “ice pick headache” but they’re only supposed to last a few seconds. This one lasted hours. I’ve found some connection with it to migraines, and as I’ve figured out recently I do have a tendency to get a Migraine the last.. four times I’ve left the house. But as of today it is gone, so. Goodness knows if it was a Migraine or something from an infection… The left side of my face randomly droops and grimaces throughout the day, so it’s possible some of the nerves in my face are generally under seige. I just hope whatever “that” was, won’t happen again anytime soon.

I’ve otherwise been having a lot of arm weakness, which is no doubt “punishment” from the M.E. after typing my last entry, however there’s something else there that’s prolonging it. So they’re recovering, but something is irritating them. Today has been quite profound as far as feeling.. I don’t know how to describe it. I’m unsure if the majority of it is from going “out” yesterday, or if there’s some type of infection flare (I did randomly start crying today…) but, I feel almost as if I don’t have enough blood in my body. I’d bet my left foot I’m in one of my anemic stages right now. It’s an.. internal weakness.. that I often feel when I’m hospitalized. I’m not sure what to call it. It’s not fatigue, it’s not weakness (then again, I tend to define weakness in muscular terms), it’s.. the “are you sure I’m still connected to my body? because I don’t think I have enough energy to even move” feeling. I’ve also had to frequently take deep breaths (which I can do, so it’s not like air hunger), so that’s more support for the anemia theory… Bartonella destroys red blood cells, you know, and I can’t help but wonder, if the bartonella is in the blood cells and then the antibiotic kills it… What happens to that red blood cell, then?

My legs are getting slightly more able during the day, so taking the Rifampin doesn’t automatically mean mandatory wheelchair anymore. So yes, legs aren’t as weak, arms are very weak (and my right one has had intermittent numbness again, how unusual), crazy headaches, weak breathing with feelings of extreme internal weakness, random dizzy spells (with that strange feeling in my head like I get sometimes), and mild amounts of arrhythmia (so the “dizziness” may actually be from that). Speaking of  my chest, my ribs keep having stabbing pains in them, along with soreness around the thymus gland. I’m not suggesting that it’s coming FROM the gland, but to get an idea for my future reference, it’s around there.

Yup. I’m definitely in health-journal mode.