Alright, I caved.

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

Best decision I ever made.

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

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

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

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

a rainbow at night

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

I think I’ve hit “the moment” in my treatment.

Yes, I have heard the news about the Whittemore Peterson Institute, but I don’t want to dampen my good news with such a topic, though it troubles me greatly. I will say, however, that I stand by Dr. Mikovits and anxiously await her new endeavors.

Secondly, it’s so.. conflicting.. for me to write of my good news in the wake of so many M.E. deaths. We’ve had five in just over a month? Maybe it’s the result of me being more in the community that I hear about it more? I’m not sure. :( But the death rate of 1 in 20 is beginning to sound like a myth, at this point.

Such is the reason why we cannot afford these petty arguments amongst the best researchers and institutions that we have on our side.

But my main reason to write is that… I AM FEELING SO MUCH BETTER. I expected things to have a good spell and then back down, as is common for us “Lymies,” but nope!

The Bactrim is treating me very well. I suspected it might, because it’s in the sulfa class and I respond well to those, for whatever reason, but this is truly remarkable. He wanted me on Bactrim DS (double strength), but as is usual for me, I could only tolerate the normal dose; taking one DS tablet put me in a state of being unable to move for four hours. Since when do antibiotic cause such drowsiness???

The herxing is mainly dizziness (which seems standard with any antibiotic I start), and I get anxiety after my night Rifampin dose like I used to a while back–it’s not severe enough to cause me to not take any of my medication, though. The seeming-optic-neuritis-thing went away after about a week, thankfully. I’ve been coughing  a lot more than usual, which is slightly troubling, and my eye twitches are happening more frequently? My mid-week flares (that are still falling from Tuesday-Thursday) are still present (headache, fatigue, dizziness, blood pressure problems, shin pain, mild fever) but not as severe, either! I had a light dotted rash on my feet the other day, but it was very faint. And the cardiac complications I’ve mentioned in previous posts, are gone! I guess it was just a herx from whatever bacteria had caused it to worsen? Or something? For all I know the Zithro may have been behind it…though it’s ironic timing that the symptoms got worse the same time the zithro apparently stopped being effective. (How depressing that azithromycin creates resistant bacteria so quickly!) Either way, those symptoms are gone. I see my cardiologist on Friday for my echo, and get my bloodwork done on Thursday to check my immune system, kidney, and liver function.

I have reason to believe my eosinophils might be elevated again: They do so whenever I either have to stop antibiotics prematurely, or when I get a new infection. Eosinophilia was actually one of the clinical clues that I had gotten something infectious, after contracting the bartonella and mycoplasma in 2008. One thing I don’t have an explanation for is that my menstrual cycle has vanished. Give me another week and I’d have skipped two months! And I’m definitely not pregnant! This is also something that happened when I got the 2008-bugs, so perhaps that, and the eosinophilia, etc., are all related, and things will even out when the bugs finish dying. :)

I”m definitely not getting worse, so I’m inclined to believe the antibiotics have been/are fighting whatever new infection I got from those new fleas! Yay!

The other day I went to Walmart, with no sunglasses, and no earplugs, and I walked on my own, with no cane nor wheelchair nor mobility scooter to help me. All right, I leaned on the shopping cart, but who doesn’t? It was a huge moment, and it shows me where I will be headed once we kill the rest of the bugs. I haven’t been able to stand up and shop for myself in over a year… I wouldn’t be able to last forever like that, but still, I was walking and standing in a supermarket for twenty minutes! That is huge!

Generally speaking (evening out the good days with bad days), if I were to rank myself on the ability scale now, I would say I am at 40% physical ability, 45% cognitive ability, and 50% symptom severity. Since my last checkpoint in May, that’s twice as good physically, 10% better cognitively, and 22% better symptom-wise! Also, if you look at the list I made then, I’ve gotten goals 1 and 2 out of the way, I’m working on doing 3 right now, and hopefully will be getting to 4-5 soon!

I’ll probably post next with my lab and echo results, etc., and who knows, maybe even more good news. To my dear readers, remember to be gentle with yourself; your body is doing the very best job it knows how.

a rainbow at night

Long overdue update, oops!

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

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

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

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

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

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

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

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

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

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

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

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

My old nemesis, PMDD!

…I can’t mentally cope with all the things that are happening with XMRV. There are lots of people/blogs dealing with that, so you can visit them, if you want commentary. Just know that I’m not surprised in the least, and right now I think people who ARE surprised have forgotten what kind of a world we live in…

But yes, for the past week I’ve had.. well, first off, NOT a Lyme flare up! :) But, I have been having another type of “flare up,” if you will, of something I’ve dealt with for the past ten years: Premenstrual Dysphoric Disorder (PMDD). And no, it’s not just extra-difficult PMS (at least not if you ask me). Sometimes it feels more like a mild form of psychosis (sans hallucinations) than a type of dysphoria. It destroys your perception of what is actually going on around you. It can be strong enough to make you want to commit suicide. It occurs two weeks before menstruation, and then when menstruation begins, the PMDD symptoms go away. For me, I don’t find PMDD to be that similar to PMS, but everyone is different. As far as I’m aware, no one has come up with a way to cure it, yet, or even know what causes it; in 2007 there was talk of a genetic predisposition. There is also a lot of talk about exercise and diet making it better, but diet and exercise make nearly any condition better; it’s not enough to make the difference between suicidal and not suicidal. It sounds to me like the usual “we don’t understand it or think it’s real, so just get outside more and you’ll be okay.” One of my psychology professors in university thought it was just a made-up term for people who wanted more attention.

Premenstrual Dysphoric Disorder (my symptoms in bold)

  • feelings of deep sadness or despair, possible suicide ideation
  • feelings of tension or anxiety
  • increased sensitivity to rejection or criticism
  • panic attacks
  • mood swings, crying
  • lasting irritability or anger, increased interpersonal conflicts; typically sufferers are unaware of the impact they have on those close to them
  • apathy or disinterest in daily activities and relationships
  • difficulty concentrating
  • fatigue
  • food cravings or binge eating
  • hypersomnia, sleeping more than usual; or (in a smaller group of sufferers), insomnia, being unable to sleep
  • feeling overwhelmed or feelings of being out of control
  • increase or decrease in sex drive
  • increased need for emotional closeness

My main fix is Zoloft. (And having M.E., a very, very small dose of Zoloft.) I usually take it for two weeks at a time, every three months, and I haven’t had PMDD in two years because of this; it resets my brain chemistry so it doesn’t fall off kilter whenever a trigger like hormone fluctuations comes along. But after getting all the migraines, having to start Topamax, and being unable to have caffeine, that left only Treximet to treat the migraines that were still popping up, and you cannot take antidepressants with Treximet. So I haven’t been able to take any preventative Zoloft since.. January, while I waited to see how long things would take to stabilize the Migraine part. I’m not frequently getting them anymore, so I started my Zoloft this morning. Within three or four days, I’ll be much better.

Yesterday I had a bartonella flare up on top of all the PMDD madness, so I was a complete emotional wreck. (Fever of 99.5 which was probably a regular 99.2 but your temp elevates slightly before your menses.) Life wasn’t helping. Thankfully, today is here! But last night I decided to take one of those online psychiatric evalutation-type tests that I’ve played with over the years. My results were pretty shocking!

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

Personality Disorder Test
Personality Disorder Information

I know what my usual results are, and they are not that. So, in case you needed a visual of what PMDD (and bartonella) can do, there you go. They can take someone perfectly sane, and turn them into that.

a rainbow at night

Still waiting…

Times like this when I wonder if my treatment has stalled out, or if I’m just being impatient.

I think the breathing episodes from yesterday could have been the result of redirected blood flow to my intestines, even though I didn’t eat a lot. I had a small episode of breathlessness about two hours after last night’s Rifampin, and again two hours after today’s. The culprit was dysautonomia, which has been getting more irritable since this last Lyme flare started, as I mentioned here in reference to the numbness rearing up again. After the digestion stopped, things went back to normal again. I can’t say for sure that’s what happened for three hours yesterday, but it’s worthy of note, regardless. My limbs went numb, and I had physical symptoms of anxiety without the mental anxiety; typical of “the episodes.” It’s like I’m herxing worse, for some strange reason.

Today I’ve been in another limbo. The entire day has been a back-and-forth of “I feel okay” to “I feel horrible.” I wish it would just pick one so I know how to react. This instability is maddening. Right now I’m in one of the bad parts, and my evening headache has arrived so I’m on more Lortab. I need to add ibuprofen because the other one alone does not relieve inflammation and therefore doesn’t do much. My eyes hurt and are sensitive. My neck hurts. It’s been hurting a lot recently, actually. It now pains me to look downward, and I can’t past a certain point, which I noticed today. I halfway wonder if I’m dealing with subclinical meningitis. I mean, if it can happen in syphilis (A chronic subclinical meningitis (meningismus) is sometimes associated with syphilis)… There’s no telling what goes on inside you when you have at least three infections in your brain and spinal cord. (Ironically, the next few lines after that quote talk about offering Rifampin as a treatment…! The book is about the hidden connection of AIDS and syphilis; in modern days, we’re dealing with the same retrovirus + spirochete combination, except now, it’s XMRV and Lyme.)

It feels like I go through stages with the headaches, as well? Honestly, the strange patterns these diseases take. I go through a spell where I barely have any headaches, and then I go through a few weeks where I get them daily. And back and forth.

You know what I don’t feel the need to do anymore? To say I’m thankful. To remind people that even though I’m frustrated, I do appreciate the things I have. I used to care too much of what people thought, and that if I took a moment to explain why I was distraught, someone might take the wrong way and just act like one of my doctors or ill-advised family members and respond with, “You just need a better attitude! Think of the positive!” Well, I no longer feel the need to explain that I always do that, even on the days that I’m frustrated. If I can gain any lesson from days like this, I’ll take that one.

a rainbow at night

Anxiety at night; Rifampin and zithro

Well. I have to start taking my Topamax before my night dose of Rifampin, now. For the past two months I’ve taken it two hours after the Rifampin, before I go to bed. It helps me relax in addition to keeping away Migraines, so it seemed like a win-win. But (and this is nothing new) the anxiety I get at night, about an hour or two after the Rifampin, is getting unbearable! Several times I’ve been too scared to take the Topamax, for any number of illogical and plainly dumb reasons. One night I took it anyway just to prove to my brain that nothing was going to happen, which was fine. But I can’t go through that stress every single night!

I wasn’t sure why the night dose affects me this way while the day dose doesn’t, but after some thought I figure it must be because I take the first dose in the morning, after 12 hours of nothing. The night dose I take five hours after the Zithromax, so the potent combination must be what’s causing the worse herxing at night. I also have dystonia at night, worse than the day; it’s usually brief, but it almost always happens.

Today, and starting last night, I’ve had the left foot heat sensations. I’ve had no appetite and been experiencing stabbing pains in my torso–chest, stomach, intestines, just everywhere. Ibuprofen was a huge help so I can only assume inflammation, as per usual. Also, the left side of my face is exhibiting worser symptoms (esp. the muscles of my left eye), and I made a note yesterday that for the past three-to-four days, I’ve had worser numbness. I’m unsure if I mentioned it yesterday…

Despite this, I did have a few good moments today. I danced a little after the ibuprofen went to work. I took a bath and washed my own hair, even used the hairdryer. And finally by tonight, I’ve gained an appetite back. I’m still feverless, exhibiting that strange “stuck at 98.9″ thing that happened a couple of.. months?.. ago.

This is off topic, but since I mentioned mycoplasma in my last entry… I’m pretty sure Rifampin also treats that? I know it treats c. pneumoniae, and some forms of the mycoplasma group, so I hope that it treats M. pneumoniae as well! That would be great, since Zithro definitely treats myco; I’m on possibly the most perfect combination of antibiotics for my infections–lyme disease, bartonella, mycoplasma–that there is. I have such a wonderful LLMD, and thank God for helping me get this far.

a rainbow at night

I think this is confirmation.

All right! So we have the mystery of random limb numbness/limbs falling asleep most likely solved, and the mystery of the “episodes” just about solved… And this morning it happened again! So if that doesn’t confirm it, I don’ t know what does!

Took Rifampin. First my tongue began feeling strange (never any swelling), then the top of my right arm began going numb, then my hands and feet went cold and mildly numb, and the right side of my face was only half-responsive. As in, if I smiled and only exposed the right side of my face, you would only barely be able to tell. Went to the restroom… And everything died down. I find this absolutely remarkable! I suppose as long as I’m not on Doxy or having extreme herxes like I was this time last month, I can probably avoid the emergency room, since the “episodes” haven’t been that severe.

My Migraine numbers are down. I haven’t had a full blown one in.. huh, it might be a week, now. No more reactions to temperature/foods since being off the Doxycycline. I don’t think there is anything left that’s without some sort of explanation… I figured it would piece together eventually if I just rambled enough! Haha. Things are a little more comforting, because now that I have an idea about what’s causing things, I know what to do in order to avoid them, or at least, not make them worse.

Last night I had Truvia with strawberries…and did experience a lot more limb numbness, however, yesterday I also started the Rifampin twice a day, for the full 600mg, which also causes the numbness, so! The jury is still out on how much it affects me. I’ll figure it out eventually. Even after the first additional dose, I needed Lortab for the horrible headaches, so I’m glad we started slowly this time. Then after last night’s dose I had small surges of sudden anxiety and really terrible thoughts, but I was able to talk to friends until they passed. Yesterday may or may not have been a bartonella flare, anyway, so I guess it’s good timing that I was to up the dose then. My thoughts are still a little sporadic today. The dystonia is back.

Right now I’m struggling with the idea of going to three more doctors in the next two weeks. Infectious disease specialist –> Neurologist –> Primary physician –> Cardiologist –> Neurologist –> Immunologist –> Cardiologist –> Another neurologist

I am burnt out, and sick of wasting all of my energy and my insurance’s money on these people who do not help me. It’s taking all I have not to just cancel everything. I especially do not want to see this additonal neurologist but three people have referred me to him… I can’t figure out whether to check the “Chronic Fatigue Syndrome” and “Fibromyalgia” boxes on the applications they sent me to fill out for his visit. I had FM but do not have it now, and I never had “CFS” but yet was misdiagnosed with it and it’s on a lot of my old papers… The only conclusion I can come up with is to write down “was misdiagnosed with” and bring Dr. Byron Hyde’s book on M.E. and CFS in case he wants more explanations.

Blah.

a rainbow at night

Another development: Is this the answer?

Okay. So we’ve figured out that other people going through bartonella treatment experience limbs that fall asleep and general messed up blood flow. Many even experience the same tingling tongue + numb arms that I get, though sans Migraine.

But something happened the other day that makes me think I’ve come across an epiphany as far as what is ultimately causing these “episodes.” They might seriously be some sort of dysautonomia attack.

It was in the “morning” (or at least, my version of it) and I hadn’t taken anything, not food nor medicine; only water. My body began digesting and wiggling around inside, you know, general bowel movement (BM) organization. Then, all of a sudden, “it” started: The right side of my face began to go numb, my tongue felt weird, and my right arm began to get cold and numb like it’s been doing. So nature called and I had the BM, and then.. everything went away!

I was stunned.

I’m no stranger to my body reacting abnormally to digestion. As I mentioned previously, sometimes when I have to digest, my POTS symptoms get much worse because of the diverted blood flow. (There really isn’t a predictable pattern to it, but eating large meals or meals that require more work are a trigger.) My body just doesn’t know how to correctly compensate for the changes, in the same way that it can’t correctly compensate for my changes in position. There’s not enough blood for the rest of me, my blood pressure plummets, and my heart rate climbs trying to keep things normal…but it can’t, so I cannot sit up or I risk passing out. Often my limbs will run cold from the lack of proper circulation. Caffeine has always helped me cope with this, I assume by getting the blood where it needs to be more efficiently; whatever mechanisms work to do this, I’m not exactly sure, but it’s nothing to do with hormones or chemical levels (adrenals), at least that much has been studied. (Do a quick search on “postprandial hypotension,” “autonomic failure,” and “caffeine” and you’ll get some interesting results…even from the 1980s!)

But… What else does caffeine do? Well, for some people, it makes them have a BM! For right now, this MIGHT explain why I cannot tolerate much caffeine without everything going awry. It seems I can tolerate a little caffeine again, because I’ve needed it in my Fioricet tablets. But I’m scared to try much else right now. It would also explain the second time I ended up in the ER because of these “episodes,” even though that morning I’d done nothing but take my Rifampin: For whatever reason, Rifampin always creates a BM about two hours after I take it. A lot of the “episodes” were also precipitated by a sudden urge to urinate an abnormal amount of liquid; I don’t know what that means, but it could definitely be related to dysautonomia as well, and I know several of the “episodes” I felt things digesting but without the need “to go.”

The dysautonomia theory would ALSO explain why these episodes seem to be correlated with my eating in general, and not correlated with WHAT I eat, but just that I eat. It’s not the food, it’s what my body does in reaction TO the food!

This morning, for example, I had only taken my olive leaf extract, and I started getting a small “episode.” My stomach began moving about, and a BM later, the symptoms went away. Then I took my Rifampin. The usual herx reactions, but also the beginnings of numbness and a tingly tongue. Again, another BM because of the medicine, and the symptoms went away again!!!

Now, I seriously, seriously think–with good reason!–that the increasing dysautonomia problems and blood flood difficulties I’ve been having since I started treating the bartonella, may be directly to blame for the “episodes,” and my increasing Migraines, because migraines are the result of problems with nerve conduction and altered blood flow. What is the main factor in my dysautonomia? Problems with nerve conduction and altered blood flow.

Oh, and GUESS WHAT ELSE is controlled by the autonomic nervous system?

Swallowing!

So even why I sporadically cannot swallow during these “episodes” would make perfect sense!

With all the spasming my circulatory system has been through today, I’m in this “pre-migraine” state that I’ve been in more often than not. It’s.. constriction of the blood vessels in the right side of my head, and it’s painful, but I can still function. It’s not a full blown Migraine, but if I gave it another trigger (like I had previously been doing with the various foods and things, like vinegar), I think it would turn into one.

So it’s all coming together, I think! I’m not saying everything is explained by just one factor, but all of them together? All of this mess–the bartonella, the migraines, the dysautonomia, the Rifampin, the Doxycycline–they are/were all collaborating, and my nervous system is just fried. But since I’m not the only person to have this happen while treating bartonella, I feel better about it.

I’ve noticed my own blog comes up when I’m searching for things, and that quite a few people have ended up here while searching for dysautonomia…

  • dysautonomia and numbness in face
  • rifampin postural orthostatic tachycardia syndrome
  • rifampin made my pots worse
  • post infection dysautonomia
  • dysautonomia lyme disease
  • need to compress legs for dysautonomia
  • nausea dysautonomia

So if this is happening to you, please know, you are not alone! And even if it feels like an anxiety attack–because the one I had this morning almost did–you are NOT doing this to yourself! Staying calm will definitely help, but ultimately, you’re not to blame if your nervous system can no longer control its most basic of functions.

a rainbow at night