So, is everyone surviving the holidays?

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

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

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

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

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

Take care, my dears.

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

a rainbow at night

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

Important discovery: Intracranial hypotension/hypovolemia.

What is it, time for me to see how many random ailments I can rack up within the shortest time frame?

After research, I’m confident enough to say I’ve figured out this very peculiar headache I’ve gotten the past few days. I think I know now why the headache I got two days ago didn’t respond to meds like they usually do. Because it happened so close to my flare days, and was just as painful as they usually are, I didn’t think much of it. But yesterday, when it persisted, I really, really thought something else was going on.

Yesterday, I felt fabulous. Finally better! However, my head continued to ache when I sat up, and got extremely painful when I stood up. As long as I was lying down it was barely noticeable. It hurt on the top of my head, a sensation I’m not entirely unaccustomed to–I sometimes get this with my occipital neuralgia attacks. But this was different. I tend to say it feels like there’s not enough oxygen/blood getting to my brain, because it’s so obviously a pressure problem… But what I didn’t realize, was that the pressure in your head can be something seperate entirely! These orthostatic headaches usually happen to me when my overall blood pressure is low, and you can literally feel all the blood come rushing away from your head. But as I said, yesterday I was fine, with the exception of my head hurting… I knew there had to be a name and an explanation for this, so last night I set out to find what it was. I couldn’t help myself, being a researcher at heart.

WELL. It turns out, I am most definitely suffering from low intracranial pressure, thus causing a headache because the decreased pressure isn’t enough to keep my brain properly suspended, resulting in it giving in to gravity, if you will, and literally pressing against/into the hole at the bottom of the skull (known as the foramen magnum), where the brain and spinal cord meet. It makes perfect sense as the why it hurts so much, yes?!?

“Headache resulting from the removal of CSF with subsequent decreases in intracranial pressure (ICP) is a well-known phenomenon.  This most commonly occurs after lumbar puncture (LP), but may occur spontaneously or as a result of trauma.  The headache is usually worsened by sitting or standing upright and improves or disappears with lying flat.  Pain is steady, often described as pulling, and occurs most commonly in the vertex [top of the head] or occipital [back of the head near the neck] regions.  Nausea is common and transient 3rd or 6th nerve palsies have been reported.  Nearly all of these headaches will resolve spontaneously over several days.  Bed rest and fluids are recommended but have not been conclusively shown to speed recovery.  In cases occurring after LP that do not resolve with conservative management, autologous blood patching in the epidural space is indicated.”

I guess even the random nausea that I mentioned last post also makes sense, now.

This is the same type of headache I got the day after my first neurologist visit, where I said, “It’d be risky to get a spinal tap because I already get symptoms of the type of headache you get after them, the ones that are supposed to tell you whether or not you need a blood patch to stop a CSF leak. If I get these headaches anyway, how am I supposed to tell whether or not I’d need a patch?!” Not having had any spinal taps, I figured there had to be some other explanation for the headaches…but it turns out you can get decreased intracranial pressure without having had a tap.

Interesting bit of information: Remember last post when I said my eyes haven’t twitched since April?  Well that time in April was the day after my neurologist visit, the last time I had this intracranial headache! I was so relieved to find that out, because it probably means the extreme twitching I got those three days was instead a neurological quirk from the nerve irritation and not a bug flaring, this time! :D (It also explains why I’ve had so much trouble focusing my eyes the past few days–they seem to want to go all over the page, which is yet another symptom of this low intracranial pressure.)

It also, and perhaps most importantly, explains another strange phenomenon I’ve had the past several months: Sometimes when I take my Topamax, it actually GIVES me a headache. I found out last night that.. Topamax can decrease intracranial pressure. :((( I halfway wonder, now, since I started it in March after I got out of the hospital, if this is why I’m having these issues at all! Since I’ve been wanting to quit it for months anyway, I am promptly weaning myself off of it–which, please, I wouldn’t recommend for people who don’t know what they’re doing!–but because of my medication sensitivity, I only ever got up to 25mg. I’ll take half for one week, and then cut it into fourths another week, to be sure. Hopefully my migraines won’t relapse, but even if they do, I’ll have to find another treatment. I still have Imitrex in case I get any of those semi-dangerous retinal migraines.

I’m kind of horrified, but also kind of excited by this. First off, I know what it is now, so I can properly treat it. (Read as: I will lie down instead of being stubborn, before it gets to the severe stage!) The only thing I need to figure out now is…why are they happening? Is it truly the Topamax? Or do I actually have some sort of cerebrospinal fluid leak? That would certainly need to be fixed… Do the infections aggravate it or is it just coincidental timing? I guess it wasn’t really coincidental this time, because it persisted even after the flare, which is what allowed me to notice something wasn’t right. I know I still have bugs to fight, but I’m semi-excited at the possibility of some of my more strange symptoms being potentially caused by something they can actually just go in, find, and FIX. Maybe some of my autonomic symptoms are being aggravated by this? Ha, is it strange to almost hope you have a cerebrospinal fluid leak?

Please note I NEVER recommend Wikipedia for health information, but once in a blue moon, their information is accurate:

“A spontaneous CSF leak, as opposed to traumatically caused CSF leaks, arises idiopathically. A loss of CSF greater than its rate of production leads to a decreased volume inside the skull known as intracranial hypotension (ICH). A CSF leak is most often characterized by a severe and disabling headache and a spectrum of various symptoms which occur as a result of ICH. These symptoms can include: dizziness, nausea, fatigue, a metallic taste in the mouth (indicative of a cranial leak), myoclonus, tinnitus, tingling in the limbs, and facial weakness, amongst others. A CT scan can identify the site of a cerebrospinal fluid leakage. Once identified, the leak can often be repaired by an epidural blood patch, an injection of the patient’s own blood at the site of the leak.

Some patients with CSF leak will develop headaches that begin in the afternoon. This is known as second-half-of-the-day headache. This may be the initial presentation of the CSF leak or appear after treatment, and likely indicates a slow CSF leak.”

The “second-half-of-the-day headache” really matches this so well, because I have woken up with no headaches, but the more I’m awake (i.e, the more I’m upright), the worse it gets. On the other hand, my infection flare headaches usually do the opposite and get better by the evening (and respond to medication–unlike these). And they feel more akin to a brain swelling than a lack-of-oxygen feeling.

I think I mentioned last post that I had one final trip to my good neurologist, and I can’t wait to bring this up incase he wants to order more tests to see if there’s anything that can be done. I’m so glad that I didn’t–for a multitude of reasons–get the spinal tap he wanted me to have back then: Goodness knows the problems that would have caused, if my pressure was already low!

Always learning, always learning.

a rainbow at night

[Edit, January 2012: Bittersweet, but it was apparently just the Topamax! I haven't had one of these episodes since stopping it.]

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

July IGeneX results.

So a few weeks ago my IGeneX results returned to me.

  1. My Lyme test is more positive. This is actually good, believe it or not! As you improve and your immune system is less burdened, you get more positive results. I now have bands 31, 34, 39–the most Lyme-specific of all, 41, and 58. I’ve never had band 58 before, and I’m not happy about it because this means the bacteria are now resistant to my fever response. This might explain why I don’t even get fevers during my Lyme flares, anymore. (See, this is your proof that they evolve.) And my band 41 now has THREE stars next to it… I didn’t even know you could get three stars! I.e., a very very positive band! I applaud my immune system for its abundance of “+” marks, whereas I’m usually only capable of “IND” bands, the very weakest positive response.
  2. NO Anaplasmosis. Also good! (Tested via IFA.)
  3. NO Babesiosis. VERY good! (Tested via IFA and FISH.)
  4. Possible exposure to either Erlichiosis (HME) or (and most likely) Rickettsia. I’m thinking Rickettsia felis–aka flea-borne spotted fever–is the most probable suspect, given my history of hundreds of catflea bites and the fact that I had a changing spotted rash on my feet for two years afterward. Good news is, Rifampin can treat it, which I’m already on, so. My results are technically showing exposure to E. chaffeensis, but it says on the paper it can cross-react with at least four other types of bugs, including all Rickettsia species.
  5. I FINALLY SHOW EXPOSURE TO BARTONELLA. So take THAT, fifteen other insensitive tests from Quest and Labcorp that said I never had it!!!

Both the Erlichliosis/Rickettsia and Bartonella tests were in the middle category of either resolving or active infection, depending upon your levels and symptoms. My bartonella score was basically borderline positive, but both results came from my IgG, i.e., where I have my immunodeficiency (PIDD, and the reason most of my tests don’t show positive). Which means, if I weren’t immunodeficient and had normal levels of Immunoglobulin G, the scores would have been higher, possibly high enough to surpass the “bordeline” category. Or at least, my bartonella result would be. Regardless of anything, I do have the bacteria antibodies. I am fighting it.

If I don’t have the Rickettsia…well I just HOPE I have/had that one instead of the Ehrlichiosis! It must be the easiest to treat, because I no longer have the spots on my feet and the IgG for it was the lowest it could have been without being negative: Anything below 40 is negative, and I got.. a 40. Accommodating for my PIDD, and it’d probably be slightly higher, but this is nothing to worry about, I don’t think. With no obvious symptoms and such low levels this is most likely in the “resolving infection” category rather than “active infection” (in contrast to the bartonella whose titers are much higher and symptoms still active). Perhaps it is also low because of the cross-reaction factor? I was tested for E. chaffeensis, so if I tested specifically for Rickettsia antibodies, would it be slightly higher? Who knows.

But mainly I am so, so elated that we finally have something that says, Look, the bartonella is here, in contrast to the.. dozen or so other tests I’ve had in the past two years that said I never had it. Pfft! (Only in the chronic illness circle are you happy when tests show something is wrong.) I wish I would have gotten tested for this via IGeneX, sooner! These are my results after six months of Rifampin and Zithro–I only wonder what they’d have been in the beginning!

And by the way. The bartonella species I tested positive for was B. henselae–the cat scratch disease variety! I wasn’t even tested for B. quintana, the type that does the classic five-day fever cycle like I have… So, based upon my symptoms and flare cycle, there’s a high chance that I actually do have them both like I feared last year. (Cat fleas can carry up to five different species of bartonella.) Speaking of that, if I’m correct, B. henselae follows more of a seven day cycle, or at least a less-defined flare cycle than the B. quintana strain… So there: Maybe the bartonella seriously is the reason my Saturdays are so “inexplicably” and yet, reliably, messed up recently…!

As far as how I feel about the results… In a sense, I’m a little relieved to find out that I’ve had two strains of bartonella, and one other resolving (most likely but unconfirmed) Rickettsial infection. It helps me better understand why I became so unimaginably ill within such a short time frame.

I’ve always thought, How on earth can two infections at once bring me down that quickly, even if I did have M.E…. But basically (already having the Lyme for two years, albeit unknowingly) within a matter of two months, I got four infections at once: The bartonella and rickettsia strains from hundreds of catflea bites, and Mycoplasma pneumoniae from the children of a family that came to stay at my house during a bad storm. It makes me think that, even though I was already steadily going downhill with the undiagnosed Lyme disease, at least it did take more than two additional bugs to bring me to almost completely bedridden within eight months.

This is also proof that a negative test means nothing. People need to realize this fact, above all else. We do not have adequate testing–your levels have to be very obvious and you need to have a functioning immune system in order for the routine tests to work. Those are the conditions they were designed to work under, and even then, the CDC admits their inaccuracies are very high. There is a REASON Lyme disease is the fastest spreading infectious disease in the United States.

If you’ve ever been diagnosed with MS, ALS, Parkinsons, RA, Lupus, CFS, or Fibromyalgia, please find an LLMD–Lyme Literate Medical Physican, the people who risk their lives to stand up to the infectious disease society and treat people who are dying–or someone else who completely undestands how common these tickborne (and fleaborne!) infections are becoming. Yes, all of those aforementioned illnesses can exist on their own, but far too many doctors unknowingly use them as catch-all categories due to their ignorance of infectious diseases such as Lyme disease and Mycoplasma. And even if you have M.E., you still need to be tested, because we are suspectible to infections that most people don’t even have to think about. (You’d be well off reading a pamphlet on having HIV, and how to avoid things–like kittens!–that are considered high risk for the immunocompromised.) Lyme can also cause false positives on autoimmune tests (such as ANA and ESR), so even having “confirmation” such as that is no merit to say you’re safe. Everyone owes it to themselves to make sure they don’t have a treatable infection like this; especially when it can and does lead to death if not treated.

a rainbow at night

Lyme flare recap, pictures, and a small rant

I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.

This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.

Otherwise,I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…

Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.

Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!

I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!

Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)

Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!


Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!

Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!

It took so long to get a good shot of her–I eventually had to put the camera on the ground!

If you rememeber me briefly mentioning Zoya Nail Polish in my first video post, I believe I was wearing Yummy. I recently applied it again (just one coat, though) and thought I’d share. I’d like to start encorporating more of my “real life” in this blog (things that don’t revolve around symptoms and disease advocacy) as hopefully, with my improvement, I’ll have more of that to share.

There’s still a health-related hook, though. The main reason I love Zoya–beside the fact that they are free of dangerous chemicals, particularly camphor, whose toxicity can be inhaled–is that the application lasts so long. No more chipping in just a day or two, ladies (and the occasional fellow); with Zoya I can use two quick coats and have it last all week. It’s become a ritual of mine that helps brighten my mood and my self esteem. If I cannot do it myself, a family member will help me, but every Friday night I redo my nails, as I briefly mentioned long ago in my How to Deal with a Bad Day post. :)

And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a  coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.

I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.

Until next time!

a rainbow at night

Slowly but surely…

…I think the pieces are coming together. I had several “episodes” since I last posted, and.. let’s be clear, that by “episodes,” I mean the thing that happens when my face and tongue go numb, my arms (or arm) goes numb, I shake and temporarily cannot swallow, which may or may not be precipitated by an urge to urinate. I’ve had lots of different types of numbness over the past several weeks, so I felt a need to clarify.

I eliminated several other things that had any timing whatsoever to do with these attacks and/or my Migraines.

  • Ensure
  • BOOST High Protein shakes
  • things with Vinegar
  • things with nitrates
  • caffeine
  • black tea (even decaf)
  • coffee (even decaf)
  • Truvia
  • Splenda,
  • and Aspartame (which is the devil anyway).

Because anything and everything can give me a Migraine attack these days. I had something marinated in apple cider vinegar and my body had a general meltdown. I had green olives with half a protein shake and had another “episode” almost immediately, so I can’t tell which was the culprit. But, having done all this, I actually haven’t had a Migraine in two days. I can’t believe that’s an accomplishment, but… I’ve been getting them every day, otherwise. I even left the house yesterday, and didn’t get one! And in the mornings, I don’t have much numbness in my arms and face, but I can’t yet determine if it’s the absence of Truvia or just a well-timed symptom. I’m scared to find out the hard way, right now. The general battle is finding out what cluster of symptoms is the bartonella, what cluster has to do with my Migraines, and how do we prevent them both. One interesting thing though: It happened this morning, and I hadn’t any Truvia, or any.. anything! Which means it can’t be purely the Truvia, despite me having a decrease in overall numbness since ceasing it. (And there’s the kicker. None of this is purely anything, but it seems to be a lot of stuff happening wrong at the right time. Which is another characteristic of my Migraines: They don’t happen until a lot of triggers add up, and then just one more will push it over the edge.) Now, what affects me worse in the mornings? Bartonella. So, which is it? My conundrum should be apparent.

My LLMD put me back on Rifampin as of the 17th since I didn’t have anything crazy happen after a month and a half on it. Then, instead of adding Doxycycline, which is driving me out of my mind with its effects and herxing and messing with my throat/vague nerve, we’re adding the Zithro! I’m pleased to report I can handle all temperatures of food and drink and have no trouble with food texture. :D I’m on just 250mg, but considering this lowest dose still makes me feel like I have the flu every evening, I’m glad we’re starting so small. I’m still on a normal dosage of Rifampin and therefore we’re killing the bartonella at a reliable level, so that’s great news for me. I will still improve at a fairly decent rate, and can expect a change in ability levels within just a few months. I’m also lucky to not have developed any reaction to Rifampin, which can happen when you stop and have to start it again. It’s apparently still working as well, because the bartonella flare I had after I restarted it (which happened to be the next day) was insane. As in, curled up in a fetal position in a dark corner of my room, sobbing hysterically, not knowing what’s going on, or even how I got there, insane. So… We definitely have to kill them bugs. Kill them dead. (This goes in the category of “things I’d never admit did I not know they happened to most people with chronic bartonella.”)

The Topamax is amazing and I’m at the full 25mg right now. My Migraines… Well, I’ve had them a long time. So I can identify when they’re coming on, but lately they have been so complex, it’s ridiculous. Usually, my migraines affect the right side of my face, with numbness and pain and temporary facial unresponsiveness; my speech slurs and I cannot tolerate any sound or light. Bartonella attacks the right side of my face too, though. :\ This recent development where my arm goes numb and my tongue goes numb? It’s anyone guess whether that’s part of a Migraine or part of a bartonella flare or herx. (It’s sometimes accompanied by this “zap” sensation as well, which I’ve never felt as part of any Migraine.) But after searching LymeNet I found out that other people with bartonella are experiencing numb tongue accompanied by numb arms. How strange is that?! One thread even talked about the general numbness that’s been creeping up on me since I started the Rifampin! And on that note, twice after taking Rifampin this time around, I couldn’t feel my legs, and all of my limbs generally have that “fallen alseep” feeling at various parts of the day now. Especially at night, when I wake up and notice my limbs are cold and numb. (That’s a bit scary, but as long as the sensation returns, I can deal with it.) So! The mystery of the random arm numbness and terrible headaches that often precipitated them, may be solved! My severely increased Migraines may just be an unfortunate consequence of treating bartonella. What also falls into place, if this is true, is why all all of this gradually got worse throughout treatment, until I got on the Doxy and all hell broke loose. Hopefully being on Azithromycin will prevent such a severe cumulation of symptoms.

In general, the “episodes” and my migraines are getting less severe and less frequent. I still have trouble when I eat sometimes, however. (Things that HAVEN’T been happening, barely at all? No dystonia, no air hunger, and no troubles with low oxygen.) I will be sticking to this “Migraine diet” until I feel safe enough to come off of it. The Ensure drinks are once again off-limits, but that’s okay because my appetite is very healthy and I’m not losing weight! I’ve been gradually adding back my supplements and herbs as well, and I’m able to tolerate them again. I’ve actually been walking around more in the past few days than I have.. possibly since January, which is amazing. As long as I don’t overdo it, I think I’m finally at a stable point again. I’m not tired, so I’m having to force myself to rest and not do more than is necessary, which is.. well, it’s annoying. It’s like sitting a healthy person in front of an amusement park with unlimited tickets and telling them they can’t get up. :| But if I’m good now, in the future I shall be able to be active without dire consequences, so I must be patient. God’s given me the best opportunity for having rest, so I need to take advantage of it. On the scale right now I’d say I’m at, 20% physical, 30% cognitive, and still 7% symptom severity. The symptoms are definitely the worst part of this right now. They are still terrible and flare so easily. But I do have a lot more cognitive functioning so I can at least use my brain more. :)

Ah, and I saw my primary physician. I had to update her on everything that’s happened during the past three months. She says not to be too worried with the brain lesion unless it changes…which is good advice, right? It’s there, it’s done; it’s if it changes that will be cause for concern. She also wants me to see another cardiologist in case something else is contributing to the mitral regurgitation. Which is, again, sound advice. Just because I have things that affect my heart doesn’t mean nothing else can be going on. So for peace of mind, my mother is taking me to one Tuesday to get a bunch of tests run, just to make sure there’s nothing there we can potentially fix.

I’ve had the same doctor for ten years. She’s seen me from the moment I started going downhill, and through the M.E., and through the remission, and then through the relapse and these infections… So her advice means more to me than any other doctor. She briefly mentioned to me something that.. sort of startled me, in a strange way. She said something to the effect of, I know you’re at a race against time to treat these infections, but you know, even in cancer patients, if the chemo is going to end up killing them… Sometimes it’s wise to just let things take their course, if the treatment is going to be just as bad or worse than the disease, so I really hope you can get on something that will work, soon, because it pains me to see you continuously going downhill like this.

…Insert sad face here?

Hearing her say that just sort of drove everything home for me, I think. These past three weeks–goodness, nearly a month!–since ‘all of that’ happened, have just been one big blur and me taking it one hour to the next, to not upset the delicate balance that my body is struggling to maintain. Consciously I do realize what I’m up against, but there’s something about talking to your doctor for twenty minutes and having her sum it up all into that

It was never a surprise that things might get this bad. Even in my old journal from the past year, which I reorganized, I found where I’d written things like this:

December 5, 2009

“Two weeks ago I couldn’t make it down my hallway. Tonight I shuffled around in the yard, and made a snowman. No, I wasn’t exactly running around, but I was STANDING UP and doing so for more than two minutes…

I’m making this post now because if what I feel right now is any comparison, tomorrow is really going to suck. No one wanted to come out in the yard and make a snowman with me. They walked outside for a minute then watched from the door as I shuffled about, but… Hell, I have no idea what condition I’ll be in next time it snows, especially if that’s a year from now. I could be better, yes, I hope, but I could very well be bedbound yet again, or worse; anyone faces these risks for some reason or another, but that knowledge is always in my mind because of.. you know.”

I guess it’s sort of like when everything tumbled in July of 2010, and I ended up living with family again, barely having a spare moment to think because things had reached a new level of bad and it all happened so fast… It just happened again, I guess. And now I’m realizing it. (Granted, I’m back on my olive leaf extract, so I’m much more “aware” of everything again!) But somehow–and the media doesn’t help–you just imagine that with enough determination you won’t “let” yourself get this sick. Ahaha. Like it’s a choice…

a rainbow at night

Dysautonomia attack?

My symptoms get weirder and weirder. I had an episode just now but not my usual episode… Something similar, though.

Once again it started with me having to urinate. My legs and arms began to shake for some reason, as if from weakness. Soon after lying back down, my arms began to go numb along the distal edges. They started getting very cold, and eventually I could not feel them. All of my limbs then began to get cold in general, and yet my hands and feet were sweating. I had to urinate again urgently. Afterward my legs went numb as well. My extremities had the consistency of lead and I had limited use of them; ever tried to use a limb that had “fallen asleep”? (My temp is 98.9.) My face was mildly numb but this wasn’t the usual “face and arms and back and tongue numbness” that’s been happening. My stomach began to have this odd sensation in it, but it wasn’t severe; my heart was not beating fast, but beating strong and skipping mildly. The shakes began to go away, replaced with a mild tremor that someone might expect from hypoglycemia. I had to urinate again. Eventually everything died down. The edges of my arms are still numb and my face is a little weird but everything else is decent enough.

Does this or does this not sound exactly like an anxiety attack? For reference, yes, it does. But you don’t get an anxiety attack lying down drinking coffee, or listening to music, or about to fall asleep. This time I really do understand why my doctors think I’m just anxious. This doesn’t make any sense. If I didn’t know me, I’d think I just needed some Zoloft, too.

Now, strangely enough, dysautonomia can explain all of this. If you’re even passing by this blog then you probably know that dysautonomia is basically where.. the parts of your brain that tell your body how to react to the simplest of things? They don’t work right. In fact they usually react with the most inappropriate response ever. You pass out when you vomit. You try to inhale in the middle of swallowing. Instead of rising, your blood pressure drops severely when you stand up. Instead of relaxing, your heart rate skyrockets when you’re lying down. Your blood vessels constrict blood flow when they’re supposed to be allowing more. Your blood sugar may drop after you eat, or your body interprets the normal rise and fall of your glucose levels as something catastrophic and you get outrageous symptoms. Et cetera.

I really can’t put all of this together in my brain right now. I just know my body is not reacting normally to something. The only factor that ties all of this together is that, all of this has happened while I’m off of my olive leaf extract. I really need to get back on it… But one thing at a time. I must do this slowly.

[Edit: I WAS DOSED. My father accidentally gave me caffeinated coffee this morning! Now, why my body has been reacting to caffeine like it's the devil lately, I don't know, especially when caffeine has been beneficial to me in innumerable ways over the last decade. But whatever the reason, I've been off of it since my nervous system started being so easily agitated. The constrictive properties of the caffeine explains so much! And also why my symptoms were so anxiety-like! I'm relieved, now. Hopefully I'll have a healthy relationship with caffeine soon, but this makes it very obvious it's out of the question right now!]

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.]