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

As of June.

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

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

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

Personality Disorder Test
Personality Disorder Information

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

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

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

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

a rainbow at night

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

Lortab, outings, and strange temperature flucuations

Yesterday our goal was to make it out of the house to take me grocery shopping. I managed to get dressed, so off we went! But when we got there, all the mobile scooters were either taken, or charging and not available for use yet. So mum came up with the idea that she would push me in my shiny red wheelchair, while my niece Nikki would push the shopping cart alongside us. And together we roamed around for about an hour, collecting my shopping list. We actually had fun doing this, which was amazing. We made it a family affair, and it was just.. nice.

When we originally left, I didn’t think I was going to make it. My heart symptoms are worse and thus I couldn’t breathe well without said pressure in my chest, and.. it wasn’t looking good for me staying upright. =\ But THEN I found half of a Lortab in my purse! And so I took it, and was able to “go shopping.” (Granted I’ve been on Vicodin for four days now because of that persisting severe headache, but yesterday it was mostly gone.) I’m sure I’ve mentioned before, but hydrocodone has this additional effect of giving me more energy and better cognitive ability. I’m always amazed at how much half a pill can work at improving my overall level of sickness, and I’m not sure what it was doing in my purse, but I was so glad it was there! It took about half an hour to work, and then I was able to sit up, and breathe, and think, and.. function. Incredible. I stayed in the car while Mum went into the other places for me–post office, pharmacy, discount store–and by the time we arrived at the grocery store, I was ready. (This effect that hydrocodone has on me is what makes me eager to try Low Dose Naltrexone, which also binds to the opioid receptors.)

Truth be told it would have been smarter yesterday to not override my body’s signals, and go back home, because now I have to pay the consequences, but… It’s not my fault that everything I do comes with payback. I don’t have the option of pushing myself 99% of the time, unless it’s due to medicinal intervention like hydrocodone or caffeine. And everytime I use one of those, I have to pay extra for it. But really, sometimes you just have to pay the consequences, lest I’d never get to do anything. I’d never shop or get to the doctor or be able to take a bath… That’s just how it is. I consider myself lucky that I am able to recover from it, instead of being at a level where every trip out of the house would incapacitate me for the next few months. And honestly, if I didn’t have my medicine (olive leaf extract, ubiquinol, l-carnitine), I know I’d be at that level. A couple of months without the OLE, and a week off of the co q-10/ubiquinol, taught me exactly how much I depend on them…

So after the trip, on the way back home, something odd happened, that hasn’t happened in about two years. My temperature dropped to 97.8°F; I was freezing. My temperature goes up and down between high-98 and low-99′s, but it hardly ever drops into the 97′s in the middle of the day. About six hours later, it went back up to 98.6°F, and then half an hour after that, down to a normal 98.2°F… This morning I woke up at 7am, took my temperature, and it was 97.1°F. I took it again when I woke up at 1pm, and it was a normal 98.6°F, where it’s been most of the day with mild (normal!) fluctuations. The last time this happened was also after a shopping incident, so I can only assume this occured because of the forced exertion (or rather, me overiding whatever level of sickness I was at before taking the hydrocodone).

Also for the record I am now on my 12.5mg dose of Zoloft to control the OCD and PMDD. This was started on the 1st.

I think I got a migraine last night, but because of my other headache, I didn’t notice that’s what it was until much later. But I had such typical migraine symptoms! Right-sided pain and facial numbness… I don’t know how I didn’t realize what was going on! (Ironically, last time I was in Walmart I got a migraine, too. And the time before that, as well. And every time I go in there my nose starts to run, no matter what season it is. I wonder if that’s significant? I hope I’m not developing some sensitivity to the place. But anyway…) Not paying attention and thinking it was just my other severe headache (which is still trying to go away completely), I took pain meds for that… But of course it was a migraine so they weren’t very effective! They helped me cope, but did nothing to actually alleviate it. When I woke up “this morning” I finally realized where I’d gone wrong, and lucky for me I was able to take migraine meds and they still worked to get rid of it. In the past I’ve had terrible luck with stopping migraines after they’ve begun, so this really was quick lucky!

Ah, and that’s enough typing for me today. I need to be preparing for whatever sort of crash I may get after yesterday.

a rainbow at night